Overactive Thyroid Graves Part 4

People take it more seriously if you have outward signs of the disease such as bulging eyeballs. My disease is mild compared to some people's, but a nuisance notheless. I did not find that it interfered with my ability to work other than I had dry and irritated eyes but I know some people with extremely elevated levels could not work until their levels came down. Of course my job is not physical in that I have to lift heavy objects, just have to walk a lot between buildings.

I do have jobs with heavy lifting and I guess it affects us all in different ways. You may not have heavy lifting, but as you say it affects you on other ways with the dryness.

I have the muscle weakness, fatigue, dry skin, palpitations, tremors, sweating and so on and I also have other health conditions on top and the last thing i've wanted to do was take time out, but the GP has offered and I may have to as i'm fed up with dropping heavy things - luckily I have steel toe caps

I have the option of radiiodine but with small kids and pets, i'd rather not go down that route unless I have too.

I took a beta blocker (Propranolol) when I had a fast heart rate. It helped a lot. And I really felt a lot better when I replaced the lost carnitine. Others on this Board felt better, although as I said even when you feel better, you have to keep a close eye on your results and adjust for the improved values. I have currently stopped all carnitines and am currently on a dose of 2.5 mg daily of methimazole (the equivalent of Carbimazole in your country) because my values have improved so much that if I didn't do this, I would soon by hypothyroid.

I have Propanolol too - I take 2 of those a day. Apparently they treat the symptoms as opposed to Carbimazole which treats the cause.

I often have blood tests so they can keep an eye on it all. When I speak to GP i'll mention Carnitine replacement.

My specialist and GP have both warned me it could be up and down and Hypo could happen at some point. My letter from specialist is quite promising though. Aside the aforementioned symptoms, I have mild bilateral  proptosis. I am someone that feels very ill reading about illnesses though, so haven't read too much on that and they don't feel it too much of a concern at this stage.

My technetium uptake scan was of no cause for alarm either, so this is pleasing.

What is your country, may I ask?

I am in Toronto in Canada. You might want to Google the article on L-Carnitine by Benvenga and print it out to show your doc. Most docs will not endorse it because it is a supplement, not a medication and they don't know anything about it and don't want to learn. I was lucky because I work for Genetic Metabolic specialists who are quite familiar with L-Carnitine because they treat some of their Genetic diseases with it and I asked my boss about it and he told me it would not hurt me, but my Endo knows nothing about it, was shocked at the great jump upwards of my TSH but still doesn't recommend it to his other Graves patients "because he knows nothing about it". I understand that in England L-Carnitine can be purchased by prescription (trade name is Carnitor) and Acetyl-L-Carntine (trade name is ALCAR). Others on this Board from England have also obtained it without prescription through Health Food stores.

By the way, the Carbimazole does not treat the cause of Graves. It blocks the uptake of excessive thyroid hormones but the cause of this disease is autoimmune, i.e. the immune system attacking the thyroid. Naturopaths suggest diet is important, eliminating gluten, wheat and Aspartame. Natural herbs used are Motherwort, Melissa and Bugleweed to calm the nervous system.

Sounds nice, Toronto..

I'll check it out. Thanks.

Yes, by googling, it's available in health food shops

My concern is my GP and specialist tells me differing things and I read other things. I think I came here as I am confused and wanted to find others experiencing this as no one I know understands or takes it seriously, partner aside.

See, I asked both about diet, but both said it won't make any difference, yet I've read about broccoli, cabbage and family helping.

I already avoid aspartame, but sorting out a diet to run alongside my GERD is proving difficult.

A Naturopath would be more knowledgeable about diet and supplements than a medical doctor.

Looks like the nearest naturopath is a few miles away.

Will look into it further. We used to have a natural/herbal place in my town but they left a while ago.

Hi David, Marigold and everyone. My RAI`s in 17 days, lol I`m counting the days as you can see. 

 The endo said to take 10mg of carbimazole a day from now till the RAI but that was after my latest blood test showed TSH 5.71 ( 0.35-3.50) and I think it`s gone even lower as I`m so tired and feeling the cold. Yet I`m getting night sweats? Also joint aches, which I got when I yo, yo`d to hypo once before.  So this morning I took 5mg of carbimazole instead, hoping my level`s will right themselves a bit- but now I`m wondering if I ought to leave things alone?  What with being so near the RAI, did I ought to be messing about with my meds?  

I think I`m getting obsessed with it all now.  Were you like this, I`m worrying about anything and everything. 

Joy x

 

Oooops sorry my TSH showed 3.51.  

And I meant to add - how`s everyone doing? 

Joy x

 

Hi Joy.    17 days and counting.

I think it would be better if you had a word with someone about your meds.

Can you contact your endo?    You don't want to upset things when you're so close to your RAI.

I worried about it too.  It was winter when I had my RAI, and I was worried to death that there was going to be a lot of snow and I wouldn't be able to get to the hospital.     In fact I'm the same now I worry about anything and everything.

Let us know what happens.

Marigold

xxx

You should have an advent calendar type thing

Probably shouldn't be messing about with the meds. I'm not 100% convinced they know what they are doing, but maybe a little bit more than us, although they can't feel what we're feeling.

Yes, Marigold, I have a thyroid nurse I can contact. I have a feeling she`ll tell me to stay on 10 mg as she told me once before that `they` prefer us to be under, rather than overactive. Better for the heart!

Thanks, I`ll see how I feel tomorrow and if no better I`ll ring her. 

I`ll let you know.

Joy xx

Yes an advent calendar would be perfect David. You`re probably right I shouldn`t be messing with the meds. I`ll see how I feel tomorrow then I may phone a thyroid nurse. Thanks.

How are you feeling David?  

Joy x

Hi Joy.  I think it's a good idea to speak to the nurse.    My endo made sure I didn't go under as I have thyroid eye disease and it would have made it worse.

Marigold

xxx

Hi Joy

I haven't posted here in a quite a while. I am over active as well and on long term carbimazole taking 5mg every other day and my labs have held steady on that and I have had no long terms problems from the pills, been taking them for about 2 years now, i started at 10mg and then got reduced down.

I decided to look in on the forum tonight and had problems signing in lately but tonight i did manage to sign in and I saw your post and if your TSH is so high, you are definitely being over medicated. TSH should be repressed in Graves patients even with normal T3 and T4 until one is ready to try for remission. Of course I am not a doctor, what i learned is from research and I have an excellent endo. I just think you need to be asking your endo about this and get some advise. Also being under active is just as bad as being over active. Being under active can also be bad for the heart and also will make the graves antibodies rise.

I wish you good luck with your Graves journey. It should get better in time.

Best, Marie

Hi Marie Rose and Marigold

I feel much, much better today and even managed a bit of housework (unheard of just lately) so I `m wondering if my levels are ok again?  I `ll forgo the thyroid nurse and instead ask my GP for a blood test if I feel hypo again.  I got to thinking that the nurse wont alter my meds without a blood test anyway. 

Many thanks though, I`ll have chocolate in my advent calendar please Marigold. 

Joy x

Days you can manage housework are a rarity, so it must have been a good day.

Take each day as it comes.

You can have chocolate, but their must be a pill wrapped inside

How did work go for you David?  

I didn`t do too much housework lol. 

I`ve thought about my levels and arranged a blood test, then I can phone the nurse later in the week and see what she suggests. I don`t want to spoil my chances of a successful RAI with the wrong thyroid levels! Thanks everyone your imput helps.

Joy x

Work was fine thanks. Very tired now though, always am after work, I become a zombie early evening

Glad you arranged blood test. For the best.

Hi Joy

Having labs done will reassure you of where you are at, but i haven't had a chance to read through all the posts but do you have Graves or just an over active thyroid?

Hope everyone else is well.

Best, Marie

An update-

Well as it turned out I`m underactive with a TSH of 6.71 (0.35- 3.50) and to top it all I couldn`t reach the thyroid nurse to ask her advice!

So I called my GP who casually remarked that `oh you`re not too far out, that will be fine!` 

I came off the phone speechless as my one big concern is having RAI and the GP not giving me the drugs I need to NOT BE hypo.

I think I did my husbands head in lol, because we Gravies are emotional anyway- but he suggested I call to get an appointment with another GP and he`ll come with me, and if we don`t get anywhere, we`ll make an appointment to see the practice manager.

He was going to ask the practice manager their policy of medicating in my circumstances. But when we saw another GP she said that after RAI they`ll medicate to suit me!!  Whatever I want- phew what a relief.

Even better- she looked through my records at blood tests back when I didn`t have a thyroid problem and in 2008 my TSH was 2.0, then in 2012 my TSH was 1.19, which makes me wonder if 2012 was the beginning of this journey?

Typically I forgot why I was there - to ask about my current TSH and how to medicate what with RAI only 2 weeks away. So I dropped my carbimazole from 10 mg to 5 mg today and am now going to try tracking down the nurse again.

strewth roll on 9th October and get it done.

Joy x

Hi Joy,

I'm sorry you're having a rough time.    It would be interesting to know what your T4 is.   I think it would help if all GPs had to have Graves then they would know what it's like.    

I often wonder what my results were when I was told over the years that they were normal.   When I had my annual thyroid blood test four years ago I was told my T4 was slightly raised and to have it checked again in a month.    When I did have it checked again it was 61, three times the normal highest level.    I've never felt so ill.   It sounds dramatic, but I thought I was going to die.    My GP referred me to an endo, but wouldn't give me anything but Propranolol to reduce my heart rate until I'd seen the endo.    I wasn't put on a high enough dose and my legs were so swollen and painful that I couldn't get up the stairs without help and couldn't get into the bath.   When I did go to see the endo I had to go in my slippers as I couldn't get my shoes on.     My endo found a heart murmur which had been caused by the increased blood flow through my heart.   I had an ECG and echocardiogram which fortunately were normal.   I can't understand why they left me for another month when my T4 was raised, when I had Graves and had had thyroid problems in the past.

Have you managed to track down the nurse?

As you say roll on the 9th October.

l

Hi Marigold

Wow I`m not surprised you felt so ill with your T4 at that level, I don`t think doctors have a clue about how ill these thyroid problems can make us feel. And fancy leaving you like that until you saw an endo?  But thank goodness your echo and ECG showed normal. 

My T4 is 15 which is spot on, I believe?  

I still haven`t spoken to the nurse but have arranged a telephone apptment with her for Monday, late afternoon.

Till then, I`m not sure whether to carry on with 5mg of carbimazole or the 10mg the endo said to take?

Your thoughts on this would be very welcome. I really don`t want to go anymore hypo ---- but then did the endo anticipate and want this to happen in prep for the RAI?  

By the way it was interesting and helpful to know my good health thyroid levels, I suppose everyone could ask their doctor to check back and see what theirs was? It was the lovely GP I saw who thought of it and she said that this is the level we`ll aim for after.

Thanks for your support- it means a lot.

Joy x

Hello Joy.    Your T4 is fine at 15.  If I was you I'd take the 10mg as prescribed by your endo.    If you have any concerns at all I'd contact his secretary and ask if you can speak to him or ask her to speak to him on your behalf.     Better safe than sorry, and he's the one who'll know what he's talking about.  (I hope so anyway)

Marigold

xxx

I

Thanks Marigold

yes I think you`re right!  I was glad of another opinion and as you say, the endo ought to know!  I`ll take the 10 mg- speak to the thyroid nurse on Monday and then follow her instructions

Phew!!  What a carry on!

My husband`s just gone to the garage shop, I asked him to get me a packet of jelly baby`s.  hehe I really fancy jelly baby`s tonight.

Joy x

Hello Joy.   I hope you enjoyed your jelly babies.    A little of what you fancy does you good.  So they say.    When I was hyper I  lost my appetite.    If I really fancied something I could eat, otherwise I didn't want to know.   I ate all sorts of rubbish, but I thought it was better to eat rubbish as nothing at all.  

Just remember that you will get better, there's light at the end of the tunnel.   I really do feel fine now.    I do suffer from anxiety, but that's just part of Graves.  I must drive my hubby potty sometimes as I worry about the silliest things, but he's very supportive.  It sounds like you've got a good hubby too.

Diet is the thing I am struggling with the most. I am always hungry but feel ill and bloated after eating, no matter what it is, but Jelly Babies sounds good

I'm really agitated and snappy at the moment - does anyone understand but us?

Absolutely shattered after work today. I just am a zombie when I get home from work - little point in me staying awake.

Hope you are all ok today - I know every day is a different day.

Thanks Marigold, 

its reassuring to know that this does get better. We`re lucky to have supportive hubby`s - I shared my jelly babies with mine

The worrying about everything is horrible. At the moment I`m tending to do the same and I hate it. 

Joy x

 

Diet is strange David, sometimes I`ll eat everything in sight ( like jelly babies ) and then don`t want to eat for days!! 

Oh the agitation and snappy-    It`s unbelievable the things I`ve said during Graves rages, words I`m not even thinking have come from nowhere.  

I think we`ve got to have a lot of patience to get through this - patience and rest!

Hope you feel a bit better today

Joy x

 

 

Hello Marigold, David and all, 

hope everyone`s ok?   And how`s it going for you David?  

Not that I`m counting..lol..but I`ve less than a week now till RAI, and tomorrow is my last day of taking carbimazole until after the deed is done.

Since I last updated, my nurse rang as promised and agreed I`d gone underactive, so reduced the carb to 5 mg a day. I`m not feeling too bad- just tired and that`s probably due to being underactive a bit.

What I wondered Marigold and all is how long after the RAI did you begin to feel better?  I realise we`re all different but it would be good to hear how you got on. Thanks in advance and hope you all have a good weekend xx

Joy

Hello Joy,

Not long now.   

I was on block and replace (Carbimazole and Thyroxine) before I had the RAI.   I had to stop both 7 days before the treatment.   I was on a steroid for two weeks before the RAI and for two weeks after to protect my eyes as I have thyroid eye disease.      I restarted the Thyroxine 7 days after the RAI at 50 mcgs.  I had my bloods checked two weeks after treatment and saw my endo.  I went hyper again, and had to go back on block and replace again for three months.  My endo thought the RAI hadn't worked and I would have to have it again.    At the end of the three months he took me off all treatment to see what happened, and thankfully the RAI had worked.     While I was on block and replace I felt fine.    Then it was a case of finding the right dose of Thyroxine to keep my bloods in the correct range.   I was on 100 to start with, then 75 and then 50 which I've more or less been on since then.    I felt fine when I was on the block and replace following the RAI and I was very closely monitored when I came off it.   I had my bloods checked weekly for a long time, as it was very important not to go hypo as it would make my eyes worse.

As you say everyone is different, but personally I think it is very important to keep an eye on your blood levels.

I hope this helps.   I'm sure you'll be fine.     I hope you have a good weekend.   We're going to see our grandchildren tomorrow. 

 

Thanks Marigold

I think I`m getting a bit nervous but at the same time, I want this over and done with so that I can begin getting my life back.  

Yes thank you, your explanation of what happened to you has helped a lot.

I`ll let you know how I get on and I`ll be sure to keep an eye on my bloods and symptoms.

The thyroid nurse was very good. She sent a letter after our phone appointment saying not to go hypo too and listed some hypo symptoms to be aware of- and also attached a blood form in case I need it.

She`s made another phone appointment for mid November- and I`ve got an appointment for the endo for January.  So all in all I`m being looked after. Plus I`ve got a lovely GP I can see if needed. 

So everything`s in place- I finish the carbimazole tomorrow for 5 days and then start them 5 days after the RAI. If I haven`t gone for bloods sooner, I`m to go for bloods a few days  before the nurse calls mid November- and she`ll tell me what to do next.

I`ve forgotten what normal is like and I`m really hoping to feel like my old normal self pretty soon.

Have a great weekend with your grandchildren.

Joy xx

Oh and I meant to say that I hope your eyes were ok after all- and are they ok now Marigold?  

A friend`s son had Graves eye problems and his eyes were a mess after RAI - he had to have it done as he had other health problems and thyroid meds didn`t agree with the other meds he was on. I saw him recently and his eyes looked back to normal. In fact he looked healthier than I`ve ever seen him.

x

Hi Joy.

My endo referred me to a thyroid eye clinic before I had the RAI to make sure it was safe to go ahead.    My eyes bulge slightly, the right more than the left.   I also have a squint in my left eye when I look up.  I sound like a monster.    I was told years ago that my squint had been caused by my thyroid, but the consultant at the hospital said that wasn't true and it's congenital.    I don't think anyone else would notice it.   

Following the RAI my eyes don't bulge as much, and it's not really noticeable.     My eyes do tend to be dry, but I use artificial tears and they help a lot.    I'm very sensitive to light, and I think that has got worse following the RAI, but it's a small price to pay.   

Don't worry about the RAI, you'll be fine.    It sounds like you're going to be well looked after too.   I bet when you walk out of the hospital next week you'll say 'is that it?'.

If you think of anything else shout up.

Marigoldxxx

Thanks Marigold and lol you don`t sound like a monster at all- in fact you`ve been my greatest support and thank you for that.

I`m much more reassured about the RAI after hearing from you. My biggest concern is will I feel better after the treatment? I understand it can take a while and they may even have to do the RAI again if it  doesn`t work, but my nervousness is mostly about not feeling better than I do right now.  

For two years I`ve not been well but had no idea what was wrong, then had bloods taken in May of this year. Since then it`s been a journey with my levels yoyoing on the carbimazole, and feeling pretty dreadful. I believe the RAI will level everything out- even if its hypo- and then I shouldn`t feel so awful. Is that correct?  

I`m like you and can`t be faffing about lol- I`m aiming for getting right as quickly as meds etc will allow.

We`re hoping to see our grandchildren today too as I wont go near them next weekend- after the RAI. Would you believe but on the 9th, the day of my treatment is our grandsons 15th birthday, we `ll be delivering his prezzie early.

Have a good time with yours

Joy xx 

 

Hello Joy.

I can honestly say, without a shadow of doubt that I feel fine.  There is absolutely no comparison between how I felt before the RAI and how I feel now. I take my Thyroxine every morning, and that's it.

It will take time to get your thyroxine dose right, but as long as you and your doctor, nurse etc keep an eye on things there is no reason why you should go hypo.

I do suffer from anxiety, but that is a symptom of Graves.  

It's a shame your RAI is the same day as your grandson's birthday.   We're going to see our grandchildren this afternoon.  Our granddaughter is 5 and our grandson 2.   It'll be noisy, but they keep us lively.

Have a good weekend.

Marigold xx

Thanks Marigold 

I think that I`m over thinking all of this, which is anxiety too and thank you again for the reassurances. 

We haven`t any tiny grandchildren nowadays, ours are all growing up but still lots of fun, although I envy you having the tiny`s still. Especially with Christmas coming up.

We saw our birthday boy grandson today and have arranged to take his prezzie over on Wed after school. 

Hope you had a lovely visit with yours.

Thank you so much again, I`ll post how it all goes later in the week.

Joy xx

Hi Joy

Not long to go for you. A bit nervous but in a way looking forward to it?

Last day of Carbimazole today? Sounds good to me.

Glad you sorted out your dosage, even though you are off of it today.

I've had a very up and down week. Very unwell on Thurs and Fri but feeling pretty ok today aside my legs which really cannot take stairs anymore

Hi David

Sorry to hear you weren`t too well on Thurs and Friday. I had that with stairs and my legs but strangely that particular symptom passed a few weeks ago. So hopefully yours will too.

What are your long term plans ie RAI or staying with the meds?  

I`m of an age that I really don`t want to hang about for remission..too many birthdays lol....so the RAI can`t come quickly enough now!

I`ll be in isolation which my husband thinks is very funny haha... too many years married too- So I`ll let you know how it all goes from cell block H.

Joy xx

Hi Joy

I really hope so - the pain in my legs on some of the stairs at work is almost debilitating - well it is for a few seconds. I just have to stop and let my legs calm down a bit.

Endo said stay on meds 12-18 months, so I have a minimum of 6 months left on them before RAI is even considered. I also have a very old pet who needs me every day (senile) so I won't have the RAI anyway until she's gone as would mean I can't cuddle her etc for a few days.

I'm late 30's but still I don't want to live out a good number of years like this. I want and need energy.

Can you use electricity with RAI? Don't want you turning on PC/Laptop/Tablet and blowing the circuit

Hi David 

well tomorrow`s the big day for me!  I`m not nervous having the treatment but nervous it wont work- yet I know this anxiousness is all Graves related.

I don`t blame you hanging on to your thyroid a bit longer, if I`d been your age I`d probably done the same- but typically my hubby and I just retired from a lifetime of work and then this Graves bombshell hit. I`d been sort of poorly for 2 years and just thought it was a getting older thing- but my endo thinks it was this all along, she told me I`d been very ill !!

I`ve forgotten what normal feels like and can`t wait ! 

We`ve got Tayla our little mongrel dog aged 10 yrs - so I`m just not gonna talk to her for a week. She`ll hate it and sulk, and stick by my husband - but the good bit is that we live next to acres of woodland and I can`t see a problem taking her for her usual walk there every day. 

Lol Oh my goodness - I can just imagine sparks flying out of my laptop.

Joy x

Hello Joy.

Good luck for tomorrow.   I'm sure everything will be fine.   I'll be thinking of you.

Marigold

xxxx

Hi David.

I had problems with my legs, couldn't get up the stairs at one time.   An overactive thyroid does cause muscle weakness, but it should get better when your bloods are in normal range.

You'll be fine with the electricity if you have RAI, but you may find you glow a little bit.

Marigold

Thank you so much Marigold.

My appointment`s at 1.30 pm. We`re in Norfolk, so have to drive to Norwich an hour away.  I don`t think we`ll be home till teatime - so I`ll probably update you on Friday.

Thank you for thinking of me 

xxJoy

Good luck tomorrow Joy.

Anxiety is indeed a symptom. I'm sure you'll be fine and i'm really hoping it works for you. Let us know how it went when you can.

I thought mine was a getting older thing rather than the spritely young early 30's chap ,I was when I started feeling slower. Finally a GP took me seriously a few years later and here I am late 30's with Graves.

Hopefully Tayla will survive without you. At least she gets the walks with you so it's not total isolation from you. I'm sure you will make it up to her when you are able to.

Best of luck

Hi Marigold.

I really hope so. Struggling physically at the moment which isn't great when you have a physical job.Barely anyone I know has heard of Graves and those that do are only aware of the symptoms that the person who they know had it, had. Frustrating as people don't take it seriously.

Joy could be a glow stick at a rave tomorrow night

Hi David and Marigold

I`m glowing and lit up ready for the rave tonight!

All done and dusted and as you said Marigold,  I wonder what I was anxious about?

I had an uptake scan to begin with and this showed that it is Graves- something about a typical pattern that the scan shows when it`s Graves. 

My dose of radio iodine was given as a drink, a half a test tube full and then a drink of water to wash it down.  

I was given a list of do`s and don`ts - like avoiding pregnant ladies etc...and sitting in the back of the car coming home.

I`ll keep you updated, so far everythings good 

Joy xx

Hi Joy.    You'll be glad you've got it over with.    It said on the news that there was a glow over Norfolk, and I thought it was probably from you.

I didn't have a scan as where I went they give everyone the same dose.   I had to swallow a capsule.    I was also told that sitting in the back of the car wasn't necessary, and they even  sent me to sit in the general waiting room.    I've just said to hubby that it's strange that you get different advice from different hospitals, and he said that's why it's called the National Health Service.

I hope everything goes according to plan.    Keep us updated.

Marigold

xxx

Hi David.

I don't think we get much sympathy.  Not many people have heard of Graves.    A friend asked me what I had and I told her about Graves and that it affects all the body, but it tends to target the thyroid. Oh she said our cat has that.  It turned out the cat has an underactive thyroid.   Nothing to do with Graves.

Lol yes Marigold, I lit up Norfolk last night.

Strange how area`s do things differently, and while I was having the scan the nurse told me they had three other patients having RAI that afternoon. She said they average about six people a week. Which made me feel better with making the right choice.

A terrible night`s sleep last night but as we`re retired it doesn`t matter- but apart from that everythings ok so far. No big change in symptoms but I`m not really expecting anything to happen just yet.

How long was it before you noticed a difference?  TIA 

Joy xx

I agree that people don`t understand just how ill Graves makes you feel. It is frustrating as the general idea is `Oh thats easily sorted.`  I wish it was!!

Hang in there David - the one thing I`ve been told by everyone is that it all gets better. 

Joy xx

Hi Joy.  Just wondering if you're ok.   Are you still glowing?

I think I must have had delayed action RAI.  I went hyper again and had to go back on block and replace for a few months.    I can remember my endo saying I wasn't progressing the way I should.   I said I'd never done what I was supposed to do and it was unlikely I would start at my age.

I didn't feel ill though as I was back on treatment.   

Remember to get your bloods checked regularly, and if you think things aren't right shout up.

I hope your grandson had a lovely birthday on Thursday.   It's a pity you couldn't be there.

Marigoldxxxxx

Hi Marigold

I`m ok thanks and still glowing brightly.  

I`m not really sure how I feel. Different...in that I WANT to do things- against- haven`t wanted to do anything for months.  

Trouble is, some old health problems are kicking off big -time.

From a previous surgery I have balance problems that I usually cope with  but right now it`s bad !  I think my `weak spot` is just being ....weak, due to the RAI.

Also I`m having mild headaches, mild sore throat and feeling hot which comes and goes. 

How long was it before you had a delayed reaction to RAI?  lol- I never do anything I should either- but so far I think I`ve made the right decision over this. 

Your opinion on how I`m doing would be soooo welcome- thanks.

Yep it was a shame we missed grandson`s birthday but by all account he had a great day- 15 yrs old eh?  The y have so many opportunities nowadays 

Joy xxx

Hi Joy,

I didn't have a sore throat following RAI, but I think it's quite common.   I think my thermostat went funny a long time ago.   I'm either hot or cold, I don't do warm any more.    I'm having problems with my balance at the moment.   I'm taking Propranolol as I've been more anxous lately, and I wonder if my blood pressure is too low when I stand up.   I went to see my GP, and when I got up to come out I lost my balance and fell over the chair.    I felt so silly and couldn't get out of the surgery fast enough.   He told me to take more water with it.

I can't really say how long it took for the RAI to work for me.   As I went back on block and replace a couple of weeks after the RAI, and was on it for three months it would be masking the reaction to the RAI.  When I came off the block and replace after three months it had worked, but if I'd come off it  after  a few weeks  it might have worked.    It's something I'll never know.   Everyone's different, so fingers crossed your RAI works quickly. 

I'm sure your grandson had a great day.     Yes, they have lots of opportunities these days.    Time seems to be passing so fast, the weeks just fly by.  I wish we could turn the clock back a few years, but then we wouldn't have our grandchildren, and they're magic.

Take care,

Marigoldxxx

 

I hope you get those balance problems sorted Marigold, it could be your blood pressure. I know what you mean by feeling silly, I `m sure people think I`m drunk when my balance isn`t good.

Chance would be a fine thing as I`d spill it with the Graves tremor lol.

Phew, I have been getting hot today- and then it passes. I`ve been looking it up and it seems the thyroid `dumps` some of the hormone as its dying off? I wonder if this is what`s happening?

I`m to take the carbimazole 5 days post RAI and that`ll be Tuesday- so I hope that`ll help as today has been the worst. 

Oh well onward and upward- at least I`m heading in the right direction and can`t wait to feel normal, whatever normal is.

Joy xx

Hi Marigold

I've not posted on here for a while but still read all the posts, I've just been lurking in the shadows!.

I'm still battling with my Graves & RA issues but remain hopeful that I will see improvement one day soon. I am still trying to get well using natural methods, its not easy but I still believe it can be done.

I'm now working with a naturopath & I have just been diagnosed with stage 3 adrenal fatigue. I've done some research on this & the reason I mention it is one of the symptoms is being light headed when you stand up so I wonder if this may be something you might look into. Sadly mainstream doctors no longer recognise the problem so discussing it with a GP will probably not get you far. I read a very informative web site which explains everything in detail if you are interested

I suspect there is quite a large proportion of the population that may suffer from this to some degree!

So currently I am taking a some supplements to try to improve my adrenal function & hope next months to start the process of getting some of my many amalgam fillings removed, I am keen to get on with this now I know what the mercury is doing to my body!

Joy - I hope things settle down for you very soon then you can put it behind you and just move on with your life.

With best wishes to you all

Ann

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Thanks Ann

Same for you, I `m interested in the adrenal function please let us know how it goes.

Marigold- urgh  I `ve got a flipping cold!  

Well I think I have? Both hubby and I started sneezing, both with headaches and sore throats and limbs a bit achey. Which answers why I didn`t feel too good yesterday. 

Thyroid wise- If I can forget the above, I`m positive there`s an improvement- I just feel a bit more like me again!  Can this happen so quickly?

 I`m convinced my thyroid was trying to kill me!  Ha! I killed it first !

xxJoy

Hi Ann.

Good to hear from you.  Thanks for the information and links.   I think what I have is more a problem with balance.   I have arthritis in my back and neck and I think that's what's causing the problem.  Which supplements are you taking for your adrenal function?

Hi Joy.   How's your cold?     When I went for my RAI hubby came with me of course (he didn't have any choice).   We were there less than an hour, and when we went in he was fine and when we came out he was streaming with cold.   I didn't get a cold.    It sounds like your get up and go is coming back, that's good.  You've shown your thyroid who's boss.

Marigoldxx

Hi Joy

Sorry, not been great and can't remember what I have and have not replied too.

Did it taste of anything?

How are you at the moment?

Hi marigold

Oh dear.

People really do just pass it off as not important. Really frustrates me.

I wish it was easily sorted Joy.

You know what they say, if they can't see it, they don't think anything is wrong.

Hopefully it does get better - I want my life back.

Hi Marigold

Day 6 and we went out to the shops- window shopping as I didn`t want to get close to any poor innocent bystander. 

I`m having bouts of getting hot - is this the thyroid dump happening do you think? I`m deff hypo but I`m not too concerned as I`m back on the carbimazole and the hot business isn`t nearly as bad as it used to be.

A couple of old complaints like my bad balance and back pain are really playing up though.

The balance thing is a nuisance, and much worse since the RAI - did you have any old complaints kick in?  

I am a bit concerned but then I`m hyper....which you can see is making me mega anxious.

Hope you don`t mind all these questions - thanks and before I go - hope you`re ok xx Joy

 

Hi David

I`m sorry to hear you`ve not been good. I`ve had other health problems in the past but I can honestly say Graves is the one that made me feel really ill.

Can you take some time out?  Get your doctor sign you on sick?

I got on really well with the RAI - mine was a drink, after I`d had an uptake scan. The tech gave me 383 (whatever that means?) and told me that it can take years to get hypo.  My husband and I thought he sounded convinced that I wouldn`t - at least just yet. Though I don`t think even the tech guy can know this with certainty.  

I`ve been getting very hot these past few days - but it doesn`t last long and nothing as bad as it was. I believe I`m hyper as my anxiety is bad but I`ve restarted carbimazole, so hopefully they`ll help. I`ve got a blood form already and have been told to get tested if I do have hypo symptoms- if not to get tested in 6 weeks. 

I`ve searched the net and from what I`ve gathered, most people take at least two weeks to feel any benefit. However I am feeling much better in loads of ways already, it`s hard to explain but I feel as though I WANT to do things again now against the last few months of dragging myself around.

I firmly believe - so far- that this was the best treatment for me David.

I hope you get your levels sorted and feel better really soon.

xxJoy

Hi Joy

I have had many problems before and a few now but Graves has hit me hard. It's just frustrating, partner aside, that nobody takes it seriously.

GP would sign me off, but don't want to risk my jobs unless I really was very unwell. I'm getting through right now. Already down to 24 hours (4 x 6hrs).

25/26 Oct I have off (plus 27th normal day off) and then a 5 day run in November. Good thing is I only work, Sat, Sun, Tues, Fri - so Fri-Sun is my nightmare, 3 days in a row, but come 4pm Sunday I only have 6 hours in 4 days.

I had an uptake scan in July - wonder if they would do the same if I had RAI.

I always get hot - in the middle of winter as well, so I must have had this for some while. Do you and your husband argue over whether to have the heating on/off as one of you is hot, the other cold?

I have some virus on top of this. I have a sore throat, kind of - it appears to be bad in mornings but better in the day. They say I must have bloods tested if I get sore throat or ulcers, but I feel pathetic doing so.

I'm glad you are feeling better. I know what you mean about wanting to do things and not wanting to. I'm half the person I was 6 months ago.

Long may your improvement continue!

Hi David

hope you`re ok? Did you get your sore throat checked? I had one or two bouts of sore throats and the docs sent me for blood tests ever time. I was always ok plus it was handy to find out where my levels were at that time.

No sign of Marigold, hope you`re ok too Marigold?

I spoke too soon and haven`t been feeling too good the last few days. I `m tempted to see my GP but so far I`ve diagnosed myself as having thyroid dumps.  I believe it can take a few weeks until this dumping is over- I`m fed up with it now though.

I`m on day 11 post RAI so perhaps I`m being a bit too impatient?  I keep telling myself this will get better ...this will get better ....

Joy x

Hi Joy.

I'm not too bad - just two 6 hour shifts this week (Tues and Fri) due to time off, so that aside, a relaxing 8 days ahead.

No, I never went. Seems to be better now although my Tinnitus is bad instead....it never rains...Still feel tired all the time.

Had a letter from my Endo today. Apparently I am Biochemically Hypothyroid but I clinically look Euthyroid. Maybe if he spent some time explaining rather than rushing, I wouldn't be googling now to find out what the heck he is talking about.

Lots of talk in the letter of him telling me this and that, which he never did. It appears he's used to doing this as he was similar the time before too.

Hopefully Marigold is just on a relaxing weekend.

What happens with Thyroid dumps? Hopefully you will feel better soon and you can get past this phase.

I'm not sure how long after RAI you are meant to feel better. Can't believe it's been 11 days - it seems like so long ago now1

Hi Joy.     I hope you feel better soon, it's early days yet.    My dad used to tell me that patience is a virtue.    I didn't agree with him as I must be the most impatient person ever.

We've had a busy weekend.   We've had a lot of work done in the house this year, so we're catching up with the gardening before the weather gets too bad.   We have a big garden which is getting to be a bit much, but we want to stay here for as long as we can.

Marigoldxx

Hi David.   Have you worked out what your endo meant?     Probably that you're hypo, but don't look it.    I had a very good endo, I was lucky, he explained everything really well.   It's half the battle if you know what's going on.    It's interesting that you feel hot even in winter.   I tend to feel hot or cold, I don't do warm anymore.    I think my thermostat must have gone.  Take care.

Marigoldx

Hi Marigold

Sounds like you've had a busy weekend indeed. It was quite mild this weekend, so hopefully you got a  lot done.

Well, looking at my TSH and Free T4 results, I am now in the 'Hypo' range. Free T3 wasn't given to me. He told me that when I was there a few weeks ago, but nothing about Euthyroid. At least my Carbimazole has been reduced to hopefully sort that out.

No signs of Ophthammopathy.

The letter is so badly punctuated, if it was  a CV i'd put it in the bin.

He was fine the first time I saw him, this time he was rushed as he was running behind. I was waiting for 30-40 minutes and he saw a  few people who had been waiting before me in that time.

All I want, like you, is to be kept informed.

Yes, i'm always hot. People wonder I don't wear a coat when it's cold, only when it's raining, or it really is freezing and I only feel the cold on my hands really. I sweat like mad when wearing a coat, even in winter.

Hi David.    It's strange you always feel hot when you're hypo. 

I'm pleased your eyes are ok.   My eyes protrude slightly, but I don't think anyone would notice.   My eyelids are droopy, and I could have an operation to remove some of the skin.   It sounds gruesome so I'll not be having that done.   I use artificial tears as my eyes tend to be dry.

Yes, we got a lot done in the garden, and we've had someone here for the last few days trimming the hedges and trees.   There's always something to do.

Hi Joy

I`ve always been impatient. I love remembering things my parents and grandparents used to say to me though. 

You`ve had a busy weekend, I love it when I go into the garden to do one job and get carried away and come indoors hours later.

I feel a little bit better today- I had every conceivable hyper symptom yesterday right down to palpitations!  It scared the life out of me and promised myself I`d phone the doc today if it was no better. But yay- it all seems ok again. 

I read about the thyroid dumps on the internet and presume this is whats been happening to me? 

Joy x

That`s a Graves head for you Marigold- I wrote to myself instead of to you!!! 

Joy xx

Hi Joy.   

I think I must have Graves head too.    My memory is terrible.    I go to do something, and when I get there I've already done it.    I must have only done it in the last few minutes, but I have no recollection.

I often get carried away in the garden.  I keep seeing things that want doing, and then when I've finished I'm so stiff I can hardly move.

Do you have some propranolol?     It would help your palpitations.   I have some that I just take when necessary.   I've had palpitations for years, but all tests on my heart have been normal, and I've been told I have a good strong heart.    I think when you're busying about you don't notice them, but when you're sitting quietly or in bed you're aware of them.

Yes, your thyroid will be dumping.   It'll get better.

It's very windy here today, but I've got lots of washing dry.

Marigold xxx

 

Hi Marigold

2 weeks today since my RAI! 

I think I`m still dumping, also I`ve very dizzy- but I think my balance problem would be worse with all of those hormones pumping into my blood stream?

Anyway, I`ve begun to monitor my balance and if I`m up in the middle of the night - its fine?  Then bad again in the morning?  I wonder why this is??

Yep, we`ve had a breezy time too up here on the Norfolk coast, we had flood warnings but luckily the sea stayed where it should have 

Hope you`ve got that washing in?

Joy xx

Hi David

I only just realised that I hadn`t replied to you- oops sorry.

I`d be googling too if my endo sent me a letter like you had- Just lately I call it Dr Google anyway 

Googling is how I found out about thyroid dumping- apparantly as the cells in the thyroid die from the RAI, they squidge out the hormones that are stored there.....and make you feel bleeping poorly!

Hope you`re feeling a bit better ? 

Joy xx

 

Hi Joy,

Just wondering how you are.    It's strange your balance is fine in the middle of the night.  Have you had your blood pressure checked recently?   I was dizzy when I was on too much Propranolol. 

We've been gardening again today, then it started to rain.    It's cold now, but I like dark nights.

 

I've always felt hot, at least as far back as I can remember. It may just be me!

Do the artificial tears annoy you? Are they easy to use?

I see you've been in the garden again. It's not too bad at the moment, recent winds aside. Certainly not as cold as usual for mid-late October.

Hi Joy

Not to worry - I find it hard to see if i';ve missed anything here. It's a little confusing.

Dr Google It does feel like people aren't telling me everything.

Ooh Well I hope you are feeling better today.

I'm not too bad thanks. Work getting a bit funny with me for being 'too slow'. They really don't understand. Just have to hold out for as long as I can.

David

Hi Marigold

Well it all kicked off since I last wrote to you. Palps, sweating, sore eyes, everything got much worse. So I thought I ought to get checked out - and what a palavar that turned out. As my doc is away, I was given a phone appointment with the duty doc. I explained about having RAI to a hmmm answer from him. Anyway after a few hmmm`s he said that he didn`t know anything about RAI and what did I want from him ???  I was floundering by now so asked if perhaps I could have my blood checked, just to see what`s happening - and he said Oh no we couldn`t do that.  So I answered but the thyroid nurse told me to get them checked earlier than planned, if I wasn`t well.  Oh you have a nurse said the chocolate teapot doctor- you need to phone her!!

Ok I don`t mind speaking to the nurse but it`s if I can reach her?  

Anyway - long story short. I left the nurse a message and bless her she got back to me. I told her my symptoms and she said but Joy you need to see a GP....grrrr.

After she heard the story of the GP she said that my eyes need checking if nothing else- plus a blood form (in case I need it) And with that she phoned my surgery and gave them what for!

I was given an appointment to see a doc yesterday and my eyes are fine- and everything else had settled down. 

The nurse did explain about the `dumping` and agreed this is whats probably happening - and from their point of view it`s good as it means the RAI is working - and working very well!  Anyway she said to give it till Thursday of next week and if I`m no better, they`ll intervene as I haven`t got to suffer.  But since talking to her, the next day, I was feeling much much better.

I hope that nurse sorts my levels out when I need it- as I dread relying on a doctor after that.

Hope you`re ok?   I  love the dark nights too, pull the curtains and shut out the world for the night.

Joy xx

 

    

Hi Marigold

I meant to add my balance is from an old operation where they had to remove the balance nerve inside my left ear- and everything and anything can upset it. I had physio after for a year to teach my brain how to re-balance but any upset, stress or even a cold and it`s poof gone - but saying that it`s perfect if I`m up in the middle of the night. xx

 

Hi David

Hang in there with work, that`s horrible with them saying you`re too slow. People just don`t understand this.  Also don`t you think that we were always quick what with being hyper and then when we have to go slower, no one really gets why?

I`m doing fine now thanks. I `m having the odd good day....normal but tired!

Joy xx

Hi Joy.

I'm sorry you've been having a rough time, let's hope you're over the worst now.    Two weeks after I had RAI I had my blood checked and my T4 had shot up again, and I had to go back on block and replace.  I was told to have my bloods checked weekly, everyone seems to do it differently.

What a palavar with the duty doctor, he shouldn't be a doctor if he doesn't know about RAI.   I saw a locum who didn't know what he was talking about.  My endo sorted him out.   Another time I saw a locum about a different matter, and he was so rude I walked out.   It's bad enough being ill without having to fight for some help.    Your nurse sounds helpful anyway.  Yes, it does sound as if the RAI has worked well.   Mine worked eventually, but I'm only on a small dose of thyroxine, so I think my thyroid must be still working to some extent.   I'm having problems with migraine auras at the moment, I don't have any for ages and then they come in clusters.  I'd love to know what sets them off.

Your balance problem must be a nuisance.    Maybe you should work nightshift and sleep through the day then you'll be ok.

Take care.

Marigoldxxx

Hi David,

I've been using artificial tears for at least twenty years, so it's just a way of life now.    They're in individual doses.   I use one before I go to bed, one when I wake up and one early evening as my eyes are sore then for some reason.   I use extra ones if necessary.  

Are you feeling any better?

Marigold

Hi David,

I've been using artificial tears for at least twenty years, so it's just a way of life now.    They're in individual doses.   I use one before I go to bed, one when I wake up and one early evening as my eyes are sore then for some reason.   I use extra ones if necessary.  

Are you feeling any better?

Marigold

Hi Marigold

Have you got many amalgam fillings? I believe mercury can cause migraine. I get them very occasionally, no more than one or two per year. I think my triggers are a combination of lack of sleep, big gaps between meals and not drinking enough water. It seems mercury can do all sorts of weird things, there is a lot of stuff on line about this.

You asked me the other week what I am taking for adrenal fatigue, I tried to reply when you asked but for some reason my laptop plays up when I am on this site so I gave up trying to reply, sorry! I am taking Sterol 117, Adriset & Nutri Adrenal Support. I also take Metagest to assist with digestion along with high strength vitamin C & fish oil. I really think I am now making a bit of progress, I'm certainly no where near as tired as I have been.. My naturopath does keep saying though that I will not improve massively whilst I still have all my fillings. I am hoping we will be discussing arranging my dentist appointments in a couple of weeks. Although I am keen to get this moving the actual thought of having my fillings changes petrifies me! I'm not keen on dentists at the best of times but I know it has to be done in order to make progress.

Best wishes to you, regards

Ann

Hi Ann

I hope your laptop is behaving itself.    I have problems when I'm on this site too.

I have had migraine since I was at school, which is a long time ago.

When they first started I had an aura,  a really bad headache, I was very sick and they lasted for three hours.   Now I have an aura, a slight headache and they last for twenty minutes exactly.    Our son has auras too, and they last for twenty minutes.   I do have some amalgam fillings, but not a lot.   Our son has no fillings at all.   I think my triggers are low blood sugar and stress.

From what I have read, opinion is divided on the dangers of mercury vapour from amalgam fillings.   If they are removed the drilling will release even more mercury vapour which could do more harm than if they were left alone.   You will also lose parts of the tooth that are not decayed when the fillings are replaced.   I hope the removal of your fillings works for you, but I'll be hanging onto mine.

I'm glad you're not feeling so tired.  

Best wishes.

Marigold

Hi Marigold and all

Wow I hardly dare say it but I feel great, very tired but normal Whether this is it and I`m now heading hypo, I don`t know, but I`m making the most while it lasts. My endo ( and me) think I`ve had Graves at least two years- could be 3 years and weirdly all sorts of little niggly aches and pains have eased too?

I went for a routine ECG yesterday , so I`ll be waiting to hear the result of that. I had afib at the start of all this, so it`s good to know they`re keeping an eye.

Hope your migraines aren`t keeping you out of the garden Marigold, it`s a perfect gardening day today here in Norfolk. I remember having terrible migraines in my 20`s then discovered it was coffee causing them- so I`ve barely drunk a cup since.  I expect you`ve looked at diet? Just a thought!

Also hope you`re bearing up David- so far if things keep as they are for me- I`d deff recommend having RAI.   Of course if I was your age I may look at it differently and hang on to my thyroid - but right now science is working for me.

Joy xx

Hi Joy.   That's good news, I'm really pleased for you.    It's possible that you have had Graves for years.    I started with it over forty years ago, had a course of Carbimazole and I must have gone into remission as I was fine until four years ago when it flared up again, much worse than it was the first time.   I had eye problems during that time though, and other health problems that were probably connected to Graves.

I hope your ECG comes back ok.   Mine was ok and the echocardiogram.

The weather was lovely here this morning, but it's been horrible this afternoon.    It's dark now and pouring down.    So no gardening today.

I thought my migraine auras were related to stress, but when we had the builders in for weeks this year, and I was stressed to death I didn't have any, so that put paid to that theory.     I get a craving for cheese, so I thought it was that and stopped eating it, but still got the auras.    I haven't drunk coffee for years, I had recurrent urinary infections so I cut out coffee and fruit juice and that helped, but I'm on a permanent low dose of antibiotics and touch wood that's doing the trick.    I don't miss coffee, I think the smell is better than the taste.   I can go for weeks without an aura and then I get a cluster.

I hope you continue to feel great, but don't try to do too much.

Marigold

xxx

Hello Joy and Marigold,

I'm glad to hear Joy that you're feeling so much better - long may that last.  I'm still on my second round of 'block & replace', as I'm scared of RAI!! 

Marigold, I too get migraines and find that if I eat dark chocolate and cheese and also a glass of wine at dinner, then I can be sure to wake up with a migraine the next morning!  I also get the auras about once every two months but haven't figured out what brings them on.  I love my cuppa coffee but only have it once a week (Sunday mornings) as a treat as I was advised against coffee, as it can promote osteoporosis, so you're doing yourself a big favour by abstaining from it!

I'm in Waterford, Ireland, and it has been a miserable damp, but warm day today.

Take care, both of you,

Stefania

 

Hi Marigold 

well my feeling great was short lived!

 I suddenly realised I felt freezing cold, headaches, and a low mood. I had a blood test form from the doctor who checked my eyes last week, so I used it yesterday and saved the form that the thyroid nurse had sent me. The doc had asked for WBC and TSH so I didn`t really expect to learn much!  Anyhow I phoned the thyroid nurse this morning as I was beginning to feel really low in mood and found I`ve gone hypo. Only just at 3.69 (0.35-3.50) but underactive all the same.  The nurse has gone off to ask advice and is calling me back but thinks the endo will say to just stop the carbimazole 5mg for now.

I`ve been hypo before when I was over medicated on carbimazole but strangely this hypo feels much different. I felt ill before, even at this level, but I don`t feel ill now- just really down in the dumps, headachey  and cold!!

Whatever has happened has been quick, I thought it all took at least a month for the RAI to do this? Hopefully this is the beginning of getting my levels right?

Hope your migraine`s better, that`s miserable to have.  I`ve heard about them coming in clusters before. 

I had repeated antibiotics for what was diagnosed intestial cystitis, is this the same as you have?  Touch wood mine stopped immediately after my Graves diagnosis and my levels brought down.  Wonder if your urinary problems may be thyroid related too? 

We`re a pair  aren`t we.

ps- I gave blood yesterday morning, phoned the thyroid nurse at Norwich hospital and she has the results- yet GP`s say they don`t get the results back for 4 days?? 

Joy x

 

Hi Joy, Stefania and everyone.

You're in the wars Joy.   I've never been hypo.   My endo said he would make sure  that I didn't go hypo as it was bad for my eyes, and he was as good as his word.   When I had my RAI I went onto thyroxine afterwards, whereas you've gone onto Carbimazole.  Different doctors give different treatment.    Has the nurse got back to you yet?   When I get my bloods checked at the surgery, the results are back the next day.

It's all happened quickly hasn't it?   You must have had rapid result RAI, and I had delayed action.

I think I just had ordinary urinary infections.   With us having an auto immune disease we can't find infections as well, and I don't think it helps when you get a short course of antibiotics.    I was only getting three day courses which didn't clear the infection properly, and then it came straight back worse than before.  Touch wood, the permanent low dose of antibiotics is keeping the infections away.   I'm also on antibiotics for rosacea, I've been on those for about thirty years.   I just take one a day and it keeps the rosacea at bay mostly.   Occasionally it flares up and I have some cream which helps.  As you say, we're a pair.

I hope you feel better soon.

Hi Stefania.   

I don't think we'll ever find out what causes the migraine auras.   It's one of life's mysteries. 

It's been damp and miserable here today, but a lot warmer.   I'd rather have it sunny and cold.

Marigoldxx

Hi Joy

I had a chat in the managers office on Tuesday. They were trying to find ways that may make me work quicker. I think if they need to let someone go, it's going to be me.

I see since this post you've had some downs and had your bloods. GPs do seem to get results a few days later unless they mark it as urgent.

Sorry not replied before. My remaining cat has been ill and they are keeping her in overnight (well, vet is taking her home) to keep an eye on her. Senile and diabetic

Hi marigold

I suppose if it's a way of life then it's not such a big thing now.

As long as they work...

I am feeling a little better thanks. I think the reduction of Carbimazole has helped. Just a shame work are being awkward (and despite them saying I am slow, nobody but the two managers think I am slow, in fact the opposite) and my cat is now pretty ill.

I hope you are feeling well at the moment.

Hi to Ann and Stefania too. Nice to meet you.

Hi David.     I'm sorry you're having problems at work.  It's a pity they can't be more understanding, you can't help being ill.

I'm sorry about your cat, I love cats.     We don't have a cat of our own at the moment, but we have a visiting cat.    He's been coming to get fed for about four to five years.   He likes a fuss, and likes to be brushed.  I think he has a home, but they don't seem to look after him very well.   He hasn't been eating  much, but we've changed his food and he's eating better now.   He must have fancied a change.   I hope your cat improves.

I'm feeling fine thanks.

Marigold

Hello again Marigold, David, Ann and Stefania

So sorry to hear that work are being like that David, I`d never ever wish an illness on anyone - but there are some people I`d like to suffer Graves for just a week or two.  Keep your chin up.

Yes the nurse rang back Marigold, she`s spoken to a consultant ( ewww) and because I have symptoms as well as the blood test, they said to stop the carbimazole and postpone my next blood test by 3 weeks.

This is all so strange because I felt awful earlier today but tonight I feel GREAT! Even my old balance problem seems improved.

Oh well, I`ll see what tomorrow brings symptom wise?

Hope you cat gets on ok David.

Joy x

Hi marigold

Work are just pains. I need that job or I also tax credits and then i'm no better off than someone unemployed. My other job say they can give me extra hours if that happens, but they've made promises before that they've not kept.

Cats are great. She is 20 though and I know the end can't be too far away. I just hope it's further away than I think.  Sounds like you have a new friend and you treat him better than whoever he belongs too.

Looks like the weather is going to stay mild for a while. Good news for you if you fancy some more gardening.

Hi Joy

The funny thing is, my boss was being tested for it and it came back negative. Since then, she's gone back to being a non believer. The Assitant's sister (or mum) had Hyper. You'd think they'd understand more.

Glad to hear you are feeling great tonight. Enjoy it!

Can't stop thinking of the cat. She's staying at the vets house tonight as she is so old and diabetic. She wanted to personally look after her. She's a nice vet.

Hi all.

Marigold thanks for being here, I`ve been reading back on here and you`ve been brilliant in helping me and others. 

The nurse said, that with my TSH at 3.69 (I think it was) that they wont treat me- and this is worrying the life out of me. Of course now I`ve stopped the carb, my levels should alter but she`s left me feeling really anxious that I could be left untreated in their `normal` range. Do you know if this is right? Surely if I`m left still feeling poorly they`d let me try some thyroxine? 

We`re off to see daughter and her family in Norwich today. 

Hope you`re ok and those migraine`s have gone.

David please let us know how your poor little cat is.

Joy x

 

Hi Joy.

When I was feeling very poorly I joined the forum and everyone was so kind and helpful.   I'm just trying to repay the kindness and help others when I can.

I can understand that you're feeling anxious.  I think they get a bit carried away with the 'normal range'.  What's normal for one person, won't be normal for someone else.  It's more important how you feel.  They seem to be leaving you for a long time between blood tests.  I had my blood checked every couple of weeks, every week at one point.    It was changing very quickly, and it was easier to adjust my thyroxine dosage before it got out of hand.   If you don't feel well contact your thyroid nurse and ask for help.   Sometimes you have to be a bit pushy to get what you want.   At the end of the day it's your health, and you know what you feel like.

I hope you have a good time with your daughter and family.   We looked after our grandchildren yesterday.  Our son and daughter in law were meeting friends for lunch.  They usually take the children with them, but we thought it would do them good to have some time on their own.  We have a 45 minute drive to get to where they live.

Our two year old grandson has just got the hang of using the big toilet, so I was up and down stairs with him so many times I felt like I'd climbed Everest by the time we got home.      We love to see them, and we had a lovely time, but it's tiring.   We were both shattered when we got home.

I've had four migraine auras in the past couple of weeks.  I've given up wondering what causes them.   Take care and let me know how you get on.

David, I'm thinking about your cat.   I hope she's getting better.

Marigoldxx

Hi Joy

I'm sure they can't just leave you. That would be failing the patient in it's highest form.

Hope you had a nice trip to Norwich

We were 50/50 with the cat as whether to have her put to sleep, but knowing she's had this twice before, we had to give her the chance, even though she appeared worse this time.

3 days on, she's 80% of the cat she was. A little slower, less confident when climbing stairs etc, but each day has shown improvement. Considering she was on another planet on Friday and she's not meowing at me for food etc, i'd say she's done incredibly well.

Delighted, but still cautious.

Hi Marigold

Good to hear you had a good time with your Grandchildren. Kids are very tiring at the best of times.

Cat is doing ok thanks - see previous reply..

Hope you are well.

Hi David

I'm feeling fine thanks.   I hope you're feeling better, and work is not too bad.

It's good news about your cat, its an awful time when they're poorly.  I hope she continues to improve.  Our visiting cat has just been for a snack.

Joy, how are you feeling?  Try not to worry about things, you will get better.   It just takes time.

Marigoldxx

Hi Marigold and David

I feel up and down like a yo-yo.  Started out ok this morning but then slowly went downhill again. I`m not sure if this is just post RAI and to be expected or I`m hypo or hyper. I `ve gone out in sympathy with you Marigold and have a headache now!!  Although it`s nowhere near as bad as a migraine.

Thanks for your suggestion, if I don`t improve soon, I`ll get back in touch with the nurse or else see my GP to see if something can be done. I`m not sure if it`s too early yet for thyroxine, the nurse seemed to want to see where my levels are in 3 weeks time. Which does seem ages away.

Lol- I`m glad your little grandson is keeping you fit, up and down the stairs for the big toilet I love them at that age.

Good news about your little cat David and thanks both of you for getting back to me.

Joy x

Hi Marigold

I had a job finding this thread again, and thought oh no! 

Anyway, I`m here at last with my update-

I felt worse this morning with all hypo symptoms, my balance was horrendous and my pulse was just under 60bpm. So I called our surgery to ask for another blood test and was put through to a duty doctor. This is another duty doctor and not the one I spoke to recently. 

At last!! The doctor said we`d try a drop of thyroxine.

He left me a blood form at the front desk and a prescription for 25 mg thyroxine, to be started in the morning- after I`ve been for the blood test today. We`re just back from doing that!

I feel a bit guilty about going behind the nurse but she isn`t suffering this and try as I might I can`t seem to get her to understand that this is making my already bad balance worse...grrr.

I `ve kept a sort of diary of how I`ve been feeling when I had my previous blood tests before RAI and at one point I was TSH 8. something and had full blown vertigo. Once my levels came up a bit the vertigo went. 

I can`t wait to try the thyroxine tomorrow - I`ll let you know how it goes.

Joy x

Hi Joy.

Do you get an email when there's a new post on the forum?    I find it easier to get into the thread from the link on the email.

I'm sorry you're feeling awful, but you did the right thing contacting the doctor.    I wouldn't feel guilty about the nurse, she's not the one who's suffering.    They've got this daft six week thing where they let people go hypo and then have to get them back to normal levels again.   I was lucky with my endo he didn't think it was right either.

He started me on 100 mcgs of Thyroxine to start with, but it was too high, then 75 and then 50.   Last year my T4 seemed to be dropping and I went on 50 and 75 on alternate days, but it started to rise too fast so I went back onto 50 which I have been on since.   The RAI has obviously slowed my thyroid down, but not stopped it working otherwise I'd need a higher dose.    I can also tell by my weight when my thyroid levels are ok.

I went from nine and a half stone to eight stone when I was hyper, and I've gone back up to nine stone.  My weight has been steady for months, so that's a good sign.    It sounds like your vertigo is a sign when your levels aren't right.  You were obviously hypo when your TSH was 8.

I take my thyroxine first thing, before I get up.

Let me know how it goes.

We had a frost this morning, and apparently there'd been thick fog.   We weren't up soon enough to see the fog.

Marigoldxxxx

 

Hello again Marigold

I usually find the link to here via email, but I`d deleted all my emails- that`ll teach me to be too tidy with my lappie

Yes, I think I did the right thing with phoning the doctor, I couldn`t imagine another 3 weeks feeling like this. I`m feeling cold, aches and pains, headache, tired - all hypo stuff, but as I said my balance is the worst. I looked up hypo symptoms and I see balance or dizziness is among them, so no wonder mine`s gone to pot as this is something I have anyway.

  If everything goes ok now, I`ll go for the next bloods as planned in 3 weeks time- and then wait for the nurse to tell me off Eeek  But by then, hopefully the thyroxine will have helped.

I know we`re all different - but how long before you felt any better on your starting dose? 

This all seems early for me to go hypo but I suppose we`re all different- and I dont suppose a drop of thyroxine will do me any harm anyway.  But I`ll be over the moon if it makes me feel a bit better.

Yep, a frost here too this morning but no fog. We`ve got a woodburner and had it lit just after brekkie time. 

Thanks again, you`ve helped me so much- it`s having someone who understands to ask these things.

love 

Joy xx

Hi Joy.    I've done that too before, deleted all my emails.    I like everything to be tidy, but I tend to get carried away sometimes.    We were going to move last year, but changed our minds.    We had a real good sort out and everywhere is lovely and tidy, but we've thrown loads of things out that we should have hung onto. 

Whenever I have changed my thyroxine dosage I've noticed a difference in a few days.    I hope it works quickly for you.

Your woodburner will be lovely and cosy.

Shout up if you think of anything else.

love,

Marigoldxxx

Hi Marigold

I`ve noticed that we have a lot in common, we were thinking of moving a few months ago but then this Graves showed itself. We`re living 20mins away from one daughter and her family but they`re working very hard with a business. Raising chickens lol- Now you know you`re in Norfolk So we try to leave them to it...Mind it was so funny just after my hubby retired as they asked us to mind the shop, while they had a few days away. I still chuckle at watching my hubby chasing the chickens - and the geese wandered off into next door. It was please can we have our geese back

The other daughter and her family are as you know in Norwich- which is almost an hour away, so we`d like to move between the two- between the chickens and Norwich.

Just an update on my goings on-

I phoned for my pre levothyroxine blood test and yes, my levels were still going down. TSH 4.48 (0.35- 3.50) T4 12 ( 8-21). 

My TSH was 3.69 last week.

I noticed my T4 is a bit lower as it was 13 the last two times?  Do you know what that may mean please?

I know I`m only slightly under active but my body certainly doesn`t like it- after RAI when I think my levels shot up, I was much brighter. Sorry to be a misery, did you feel like this at times?  

I`m not sure the levo is doing much yet but then its a low dose- hopefully it`ll kick in soon. I`m only on day 3 of taking it.

I`ve read online that it takes quite a while to get level and feeling ok,  reading through all the past posts have helped over this. 

Would you mind me asking what area your in?  I understand if you`d rather not say. Thanks so much again for being there.

Joy xx

 

Hi Joy,

Your results aren't bad.   Your T4 shows how much thyroxine is circulating in your body.    If it falls then your TSH goes up to stimulate your thyroid to produce more thyroxine.  Whether it can or not depends on whether your thyroid has been  disabled or just slowed down.   You're on a low dose of thyroxine at 25, but I'm only on 50.   You'll find out where your T4 needs to be for you.   When my T4 was down to 12 my GP said she was happy with it at that level.   I said I wasn't.  I feel better when I'm up at 16 or 17.   I think when there's a normal range you're better off somewhere in the middle.   Just my opinion.

We do seem to have a lot in common.  We had found a buyer for our house, and found somewhere else to go, but our buyer starting messing us about so we dropped out.    We did some work - a new kitchen and windows and decided to stay here for the time being.   We wlil have to move at some point as the garden is getting to be too much for us.  We have about three quarters of an acre, and it tends to take over.  

I can imagine your hubby chasing the chickens.   One of our neighbours has chickens, and occasionally we see one wandering round our garden.

Visiting cat and a chicken were sitting on our front lawn one day staring at each other.    I had to stand guard until our neighbour came round to rescue his chicken.   I don't know which one would have come off worst.

Our family would like us to move nearer, but as we get older we feel that we like familiar surroundings.

We live near Durham, a lovely part of the world.    We're next to farmland and open countryside, but not far from decent shops.  We had a lovely holiday in Norfolk, it must be about thirty years ago.   I can't remember the name of the place, but we weren't far from Great Yarmouth.  I'm sure you'll know where I mean from the description.

Marigold xxxx

 

Thanks for your reply Marigold

I`m glad you understand all this because I can`t get my head around it yet. I think though that I have felt better when my T4 was higher.  I`ll just wait and see and hope my dose of thyroxine sorts me out.  I`ve got another blood test in 3 weeks so it`ll be interesting to see what the levels are then. 

I think I`m expecting too much too soon. 

I have heard Durham`s a lovely area, I think you`ve got much better views than us. As you know Norfolk`s very flat.  We live along the coast from Yarmouth, so we`ve got the beach for some nice walks.  

I can imagine that the gardening becomes a lot to do and I`d pull out of a sale too if they messed us about.

I can just imagine the cat and chicken saga in your garden lol. 

thanks again.

Joy xx

Hi Joy, Marigold and anyone else.

Sorry, i've been unwell myself for a few days. I've been going into work for fear of losing my jobs but I now have two days off to relax.

My cat is doing well. She is 20 though and has diabetes and a short circuit in her brain, so it could flare up again anytime, but she's a fighter.

How are you both? How is anyone else reading?

David

Hi David

Pleased to hear your cat`s doing well, I wondered how she was- that`s a good age. Sorry to hear you`ve not been well tho- this flamin` graves gets on your nerves. From what I`ve read, I think it`s a long journey to get well-- but we will !!

It`s such a shame you`ve got that fear of losing your job, that`s so unfair because the stress won`t help.

I`ve not been too sharp myself. I wasn`t too bad after the RAI but the last few days I`ve had nausea, of all things. I went to the doc and he says I`m expecting too much too soon and I`ve got to be kinder to myself. He said this is all normal and I`ve just got to wait for the treatment to do its job. Anyway he`s sure that I`m underactive now and I`ve got a small dose of levothyroxine- which he`ll happily increase if my next blood shows I need it.  He says my levels are still all over the place - like a bus swerving and I`m bound to feel ill until they settle.

We`ve got a family meal planned out in Norwich on Sat. There`s 10 of us going and I`m crossing my fingers that I can make it. That`s the bit I hate the most, not being able to plan ahead because I may not feel well. 

Anyway hope you have a rest and feel better.

Hello Marigold, hope you`re ok.

Joy xx

 

Hi Joy.

I was wondering how you were doing, and when I looked you'd been on the forum, but I hadn't had any emails.    So sorry I hadn't replied, and sorry to David too.

We do have some lovely views in Durham.    We liked Norfolk too, and Hubby has remembered that we stayed in Hickling.  We had a lovely holiday.  Our son was only four then, but it doesn't seem that long ago.

I'm sorry you're suffering from nausea.  I didn't have nausea, but I've just googled, and it says that some patients are given anti nausea medication before they have the RAI, and some more to take home with them.    No mention of that when I had mine.    I hope you manage to get to the family meal on Saturday, it'll be a shame if you miss it.   We have our family coming for tea on Saturday, so we're looking forward to that. 

Glad your cat is doing well David, I was wondering about her.   Our visiting cat has just been for a stroke and a snack.    I'm sorry you're having problems at work, the last thing you need is stress and worry.   You wouldn't believe the things I worry about.   I sometimes think I've lost the plot.

Take care both of you.   Thinking of everyone else.

Marigold

xx

Hi Marigold

I know Hickling, thats a nice place to stay- we`re further along the coast a bit further than Cromer.  

Dare I say but today I feel a tinsy bit better, the nausea is not so bad as its been and I feel a bit livelier - I hope the levothyroxine is kicking in at last. My hubby went to speak to the pharmacist for me to get something for the nausea and he said this is normal, and I just have to wait for the levo to do its work.

This all seems such a long job but if I remember right you were a few months getting sorted- weren`t you?  

I had that strange metallic taste as well, for two days so I wondered if I`d had another thyroid dump and the RAI is still killing off the thyroid?

Hope you have a nice time with your family on Sat and fingers crossed I get to see mine too.

Joy xx 

Hi again Marigold

I`d already messaged you earlier- so I`m not sure if you get that one 1st-  but would you believe it I had really bad nausea again today. It was getting worse as the day went on, so I phoned my thyroid nurse to ask her what she thought- and she doesn`t think its the levo or my thyroid, not with the levels I`m at.  Anyway I asked hubby if he`d go to the health food shop and ask there as by now I was feeling really ill. He came back with cider vinegar and honey to take in warm water and hey presto!!  All sickness went!  I`m beginning to think this could be lactose intolerance as the only thing I`d had today apart from my levo was my breakfast cereal and a few cups of tea.

I`m over the moon as that nausea has been going on all week- and I`ve been eating and drinking more dairy. 

A tip if you ever feel sick- drink cider vinegar and honey 

catch you soon

Joyxx

 

Hi Joy.  Just seen both your posts.     I must admit I thought it was a bit late for the nausea to be caused by the RAI.   

I stopped eating breakfast cereal about a year ago as I thought it was upsetting my stomach, and I've been much better without it.   I didn't like it much anyway, it was just quick and easy.   lol    Hubby had tummy problems for years, he tried excluding all sorts of things.  He was drinking cider vinegar and it helped a lot.   Eventually he started keeping a food diary.  I like white bread and he liked brown bread with seeds.   One day he said he was going to stop eating the brown bread and have the white instead.   He's been fine since then.   A friend had the same problem with brown bread, and I've read of cases online. 

I didn't have a metallic taste in my mouth following the RAI, but I did  when I was having iron injections.  

I hope you have a good weekend with your family.

Marigoldxxx

 

Hi Marigold

I thought of you and hope you had a good time with your son and family for tea last night. I never made ours, soooo disappointed. I got ready and stood at the door and just couldn`t face going- I felt so tired and crappy. Even my coat felt too heavy to wear!! I`m only 5 weeks post RAI so perhaps I`m expecting too much? 

Anyway, I suddenly had a thought - one of our nieces is a pharmacist and has an underactive thyroid too- so I got in touch to ask her advice. I`d forgot she was one as I still see her as a little girl  Anyway bless her, she`s been in touch and believes the levo isn`t causing any problems as it`s too small a dose- but she thinks I maybe hypo and the meds just haven`t had a chance to kick in yet.   She said once I get the right dose, I`ll feel well again. I`ve got bloods this week, so I`ll see what happens with them. At least after speaking to the nurse the other day, she realizes that I don`t cope even just a tiny bit under active.

Joy xx

Hello Joy.   I was thinking about you yesterday and hoping you were well enough to go.    I'm sorry you didn't make it, but there'll be lots of other times.     I know what you mean about your coat feeling too heavy.  

We enjoyed seeing our family, and we'll see them again on Saturday as we're looking after the little ones while mam and dad go to see a film on the afternoon, and then we'll stay for tea.   I'll be mountaineering again taking our grandson to the toilet every five minutes.

Your niece is right, it's early days, but once you get on the right dose of thyroxine you'll feel well.   

When I was five weeks post RAI I had gone hyper again, and was back on block and replace for a few months.   My endo said I would probably need another dose of RAI, but it all sorted itself out.   It'll be interesting to see what your bloods show.   Remember, you're the one who knows what you feel like, not the nurse.  

It's cold and misty here today.

Marigoldxxx

 

Thanks Marigold

like my niece you`ve reassured me that I will get well with the right dose of levo. 

I may be wrong but I think I`ve gone more hypo, my knees and wrists ache and I`m soo tired too. I`ll probably go for the bloods on Tuesday then I can ring the surgery on Thursday or Fri to get the results, they say to leave it 3 days before we ring. My thyroid nurse is due to call me next Monday to say what happens next. 

I`m so pleased you had a nice time with your family- yes we `ll have other times to spend with ours.  

Good luck with the mountaineering/ potty training- I love that age group they`re so funny. 

I`ll let you know how my blood tests go.

Thanks again for all your help xx

 

Hi Marigold

what a carry on!  I went for my bloods,and then phoned the duty doctor hoping to get my levothyroxine raised because I felt so hypo. He insisted I have a virus- this is all over the phone, he hasn`t seen me.  So......I`ve had RAI and I`m supposed to go hypo, I`ve got all the symptoms but the idiot thinks its a virus!!!

Anyway my results are TSH 6.00 (0.35- 3.50) and T4 is 14 (8-21) so it looks as though the RAI has worked. I`m going hypo even though I`ve been taking 25 mcg of levo.

My last TSH was 4.48 and T4 was 12.  

Do you know if that rise in T4 is good...or what it means?

I had to argue that I needed a rise in levo and that`s wearying!!

Anyway, I got an increase to 50 mcg and made sure it`s on a repeat prescription.

My own GP is just back from holiday so hopefully he can sort me out in the future.

On top of all this I still keep getting nausea and looked online where people were saying there may be a filler in the levo that doesn`t agree with me?

Talk about living in a small town lol- I phoned our surgery and got the dispensary and it was a girl who`s mum I went to school with. I asked if I could have another brand and she `s arranged it....She said her mum had the same trouble when she started levo. lol. I don`t think she was supposed to tell me her mums business

I can`t wait to start taking the 50 mcg- hopefully when they kick in I`ll notice a difference?

Hope you`re well.

Joy xx 

Hi Joy.   What a palaver.   Whenever they don't know what's the matter, they say you have a virus.

In my opinion your results are fine.   The TSH is thyroid stimulating hormone which is telling your thyroid to produce more thyroxine which it can't do as it's been zapped.   T4 is the thyroxine which is circulating in your blood stream, and 14 is fine.   The rise from 12 shows that the thyroxine is working.    My endo told me that the T4 was the important result when you'd had RAI and not the TSH, but of course they all have different opinions.   Keep an eye on your T4 if you're going to increase your thyroxine.   You don't want to go hyper.

I haven't had nausea with the thyroxine, and I've had lots of different brands.  I know I sound like the GP, but do you think the nausea could be down to something else?

When I was really poorly and when I was waiting to see my endo my legs were so swollen that I went to the out of hours clinic at the hospital.  The GP I saw there was adamant that I must be hypo as he said you don't get swollen legs when you're hyper.   I told him my T4 was over 60, but he was having none of it.   He wanted to admit me, but I said no way and came home.   The next day I managed to see my GP and he couldn't believe how swollen my legs were.    It turned out the dose of beta blockers I was on was too low and I had heart failure, and fluid was building up in my legs.  Once he increased the dose the swelling started to go down.    I don't think they know much about thyroids.   It's a pity they can't have Graves for a while, and then they'd know how horrible it is.

I'm fine thanks, better than the weather.

Marigold

xxx

Hi Marigold

thanks, that`s reassuring to know the T4 rising means the levo is working.

I agree, I don`t think some GP`s have a clue about the symptoms of graves.  When I was 1st diagnosed, my GP looked at my legs to see if they were swollen as he said that was a sign of hyper and not hypo as your GP said- they all seem to say different things.

I`ll be sure to keep an eye I don`t go hypo with the extra meds.  Although being even slightly hypo as I am now certainly doesn`t agree with me- my balance gets worse!

I`m confused about the nausea, I was fine this morning and then about an hour after I took the levo it started and built all morning- but went by teatime? I`ve got an appointment booked with my GP for next Tuesday to see what he thinks, and if it gets better I`ll cancel. The girl in the dispensary said it could be the fillers in the brand of levo they`ve given me. I`ve got another brand now. But as you say it may be something completely unrelated to my thyroid?

Thanks again for your help

Joy xx

Hi Marigold

thanks, that`s reassuring to know the T4 rising means the levo is working.

I agree, I don`t think some GP`s have a clue about the symptoms of graves.  When I was 1st diagnosed, my GP looked at my legs to see if they were swollen as he said that was a sign of hyper and not hypo as your GP said- they all seem to say different things.

I`ll be sure to keep an eye I don`t go hypo with the extra meds.  Although being even slightly hypo as I am now certainly doesn`t agree with me- my balance gets worse!

I`m confused about the nausea, I was fine this morning and then about an hour after I took the levo it started and built all morning- but went by teatime? I`ve got an appointment booked with my GP for next Tuesday to see what he thinks, and if it gets better I`ll cancel. The girl in the dispensary said it could be the fillers in the brand of levo they`ve given me. I`ve got another brand now. But as you say it may be something completely unrelated to my thyroid?

Oh my word- that must have been scary to hear you were heart failure !

Thanks again for your help

Joy xx

Hi Marigold

thanks, that`s reassuring to know the T4 rising means the levo is working.

I agree, I don`t think some GP`s have a clue about the symptoms of graves.  When I was 1st diagnosed, my GP looked at my legs to see if they were swollen as he said that was a sign of hyper and not hypo as your GP said- they all seem to say different things.

I`ll be sure to keep an eye I don`t go hypo with the extra meds.  Although being even slightly hypo as I am now certainly doesn`t agree with me- my balance gets worse!

I`m confused about the nausea, I was fine this morning and then about an hour after I took the levo it started and built all morning- but went by teatime? I`ve got an appointment booked with my GP for next Tuesday to see what he thinks, and if it gets better I`ll cancel. The girl in the dispensary said it could be the fillers in the brand of levo they`ve given me. I`ve got another brand now. But as you say it may be something completely unrelated to my thyroid?

Oh my word- that must have been scary to hear you were heart failure !

Thanks again for your help

Joy xx

Hi again Joy.,

Are you taking your thyroxine first thing on a morning?    I take mine before I get up.

Be sure to keep an eye on your blood levels to make sure you don't go overactive.

I hope your nausea settles, you've done the right thing making an appointment with your GP.

I've been meaning ask if you're jumpy.    I'm very easily startled, and I even jump if someone coughs.

Take care.

Marigoldxx

 

Hello Marigold

Yes, I`m taking the thyroxine first thing, I`ve got the tablets and a glass of water beside my bed. Then I mostly go back to sleep for a little. 

I`ll be sure to see I don`t go overactive.  I think this is it, that the RAI worked and I`m now underactive. I may be wrong though?

I`ve still got the nausea and I`ll be glad to see my GP over it- but my appointments not till Tuesday. I `ve wracked my brain and can`t think whats causing it unless it`s because I`m underactive and the meds need to work to bring my levels back? Two doctors gave a different answer to that !  I feel as though I need a season ticket for the surgery as I`m always there now !!

No I`m not jumpy. I was when I was over active at the beginning and just like you`re describing, even if someone coughed etc.  I had terrible panic attacks too- but they all went but bearing in mind, all the while I was treated with carb, I was kept underactive. At one point I was making my husbands nerves bad in the car  I was jumping on every journey.

Have you had your levels checked? You maybe a bit overactive??

 Take care too

Joy xx

Hello Joy and Marigold - my have you both been busy

I hope you are both doing well. I note some nausea - I hope that has calmed down?

I've been ok. Really annoying is that the pharmacy didn't put through my repeat prescription for carbimazole AGAIN. I had to get onto them and they gave me them 6 days after they were due. Luckily I have a small amount left from when my dosage was reduced but they do this every month. Pharmacist assures me it will be fine for next month...we will see.

Looking for another job. One of my jobs is on the line after Christmas, so need to find another or it's a loss of a lot of money,

Hi David

Yes, I`m having unexplained nausea but I`m seeing my GP next Tuesday- he`s been on holiday and I`ve been stuck with duty doctors. Mine usually prescribes something to help-- here`s hoping. Besides I think I need to find out whats causing it?

That`s typical of some chemists, it`s not good really as you may`ve need those meds.

Good luck with the job hunt.  But mainly hope your feeling ok?

catch you soon

Joy xx

Hi Marigold

hope your well and not having those horrible migraine auras.  

My news is that the thyroid nurse rang me today about my last blood tests. She`d shown the results to a consultant and they`ve put my levothyroxine up to 75 mcg.  I`m pleased because I`ve been having terrible under active symptoms- everything possible aches!

So anyway, I raised the dose myself this morning before the nurse rang and after about an hour I felt better than I had for a few weeks. It didn`t last long until the hypo symptoms came back- and it seems strange they acted and had that effect so quickly- but I`m living in hope this increase will help a lot.

I`ve still got the nausea. The nurse said it could be because of being hypo but I`m seeing the doctor tomorrow and hopefully getting it sorted once and for all. I had a thought though- I was prescribed temazepam sleeping pills when I was hyper and have been trying to wean off them. Then its after I take them that the feeling of nausea starts??? Perhaps this is the cause. 

Any way hope you had a good weekend up and down the stairs for the toilet training- I thought about you 

catch you soon

Joy xx

Hi Joy,

I was just going to send you a message when you popped up.  One of us must be psychic, or maybe psychiatric.

I hope you feel better on the increased dose of thyroxine.  I think I must be just naturally jumpy.  My last results were TSH 3.44 and T4 16 which is spot on. 

I'm sorry you still have the nausea.    I haven't taken sleeping tablets very often, but I've felt awful the following day, so maybe they're causing your nausea.    I usually take a beta blocker before I go to bed, and some co-codamol for my arthritis, and I've been trying to wean myself of both drugs, but I can't get to sleep for ages so I'm taking them both again.

It's horrible lying awake for ages, I start to think about all sorts of things.

Let me know what the doctor says tomorrow.

I hope you had a good weekend.    I think the novelty of going to the big toilet must have worn off a bit as we weren't up and down the stairs much at all.    He was full of mischief though.       I was busy drawing pictures with our little granddaughter.

Marigold xx

Hello David.    It's annoying when the pharmacy mess up your prescription.

I try to have some extra tablets in the house just incase.    They often don't have my eye drops and have to order them, so it's another visit to pick them up.    I've been getting them every two months for years, so there's no excuse.

I'm sorry to hear about your job, I hope you manage to find something.

Try not to get too stressed.

Marigold

Hello Joy,  I've been following your posts with interest, as I was offered RAI but refused it at first - though I may still have to go down that route if the block and replace doesn't work. 

I also take the thyroxine first thing in the morning, but another thing no-one tells one, is that one should not take any calcium supplement for a few hours afterwards as it interferes with the thyroxine absorption! I do not know if milk has the same effect - I don't take it at all, not even in cereal.

Hope you continue to feel better,

Stefania

Hello stefania

I hope your block and replace works out ok. But if not I don`t think we have much choice than to go for RAI. It`s a bit of a roller coaster ride but I look at it as the beginning of getting well. 

That`s a good point about milk, thank you. I `ll try a few days of leaving it out in the morning.

Joy x

Hello again Marigold

I wanted to be sure to tell you what the doctor said as you`ve been so kind.

I had a long chat with him on the phone- they do phone appointments here 1st- and he believes it is the sleeping tablet. He`s written me a prescription for some more anti-sickness tabs and has made me an appointment for Monday to see him.  On Monday he`ll arrange a proper taper method. It seems my body has become tolerant to them and unless I take far too many I`ll keep getting the withdrawal symptoms, nausea being the most common. I told him I was getting a bit concerned but he said he`s looked at all my blood results and everything looks ok. I have a lot of faith in this doctor as he saw me through the op where I lost my balance, which is why I waited to speak to him.

The sleeping tablet is Temazepam and I`ve googled it- and sure enough it`s one of the worst to withdraw from!!  It`s a benzo drug, sorry I can`t spell the whole name.

So I`m a drug addict now - typical !!!

So yes, I`m not physic but psychiatric  

On the thyroid front- I think I`m slowly getting there.  I`m still very tired and washed out (nausea not helping that) but I find I`m doing a bit more around the house everyday. Good old hubby`s been doing the lions share- but he misses bits.  I`d never have managed without him but I want to get at all those missed bits !!

Do they have different ranges in your area for TSH and T4 as the range here is TSH 0.35- 3.50. And T4 is 12- 21 (I think?)

Lol at the novelty of big toilet wearing off- I love that age group.

A nice day here in Norfolk- and hello there David and Stephania.

Joy xx

Hello Joy,

I've just looked on the forum and seen your message.   I didn't get an email again to say there was a message.

So you're a junkie now.  Just what you need.    I'm sure your doctor will soon sort things out.   It helps when you have one you trust.   We have a good one at the moment, but the trouble is they don't stay long.

I know what you mean about the missed bits.   Hubby helps me a lot with the housework, but I often sneak round after him with a duster catching the bits he's missed.  I couldn't have managed without him when I was poorly.   I couldn't get in and out of the bath without his assistance.  We often laugh about it as I used to take my mobile with me and phone him when I was ready to come out.   I used to shout heave ho!!!   Then one day I forgot my phone, and I was stuck for ages.  It wasn't funny at the time.

The range I  have for T4 is 11 - 22, and TSH 0.5 to 5.00, but my endo said that the TSH isn't that important when you've had RAI.     It's four years tomorrow since I had my RAI, and it was snowing.

It's been a cold, dark, wet day today.  Really miserable.

Thinking of everyone.

Marigold

xxx

Hi Marigold

I think I posted my message in the wrong place, which may be why you didn`t get an email?  I`d cleared my emails out again and couldn`t find our last message ( I must stop doing that!) 

Thank Goodness, the new anti sickness pills worked. This is the 1st day for almost 3 weeks that I haven`t had nausea. I have to keep taking the sleeping pills because it`s dangerous to just stop them, but I look at them and think yuk!! But as you say the doctor will sort it out.

I asked about your reference range  because at your TSH and T4 levels I wouldn`t feel well, but I can see it`s higher than the doctors use here. Wonder why they all have different levels- it would be easier using the same?

My T4 had risen to 14 on my last blood test, did you say that means the levo is working?  Because I feel it is.  

Also ....sorry so many questions but why isn`t the TSH important after RAI?  Do they just go on the T4 now?

lol.....you and the bath made me chuckle, although it wasn`t funny at the time.

Ages ago when I first had a mobile phone, I was watching telly in our bedroom and phoned my hubby in the lounge to ask him to make a cuppa    I heard him muttering and complaining when he had to drag himself away from his movie...

Joy xx

 

Hi Joy.   How are you feeling today?  

I agree with your GP, your thyroid results look fine.    My endo told me that the TSH isn't so important after RAI.    When it rises it means that the thyroid stimulating hormone is telling the thyroid that it needs to produce more thyroxine, but it can't as it's been disabled or partly disabled.  This means that you're depending on the thyroxine that you're taking in tablet form.   The T4 shows how much thyroxine is circulating in your body.    Your T4 level at 14 is fine.    Maybe your tiredness is due to the sleeping pills and not your thyroid?    I know when I've taken sleeping pills I've felt like a zombie the next day.  I felt like I couldn't wake up.

 

Next time you see your endo I'd ask him to explain what happens.  My endo was very good, he explained everything, with diagrams when necessary.

We have the most horrible, damp, cold, dark weather here.   Hubby keeps saying it's the dark days before Christmas, he says it every year.  He's very predictable.

Marigold xx

Hi Marigold

I `m feeling much better today. I can hardly believe the difference. I`ve been taking 75 mcg of levo for 4 days now and this seems it`s what my body`s been waiting for. I can wait to see how I feel when the dose really gets into my system----yippee!!

We had a bit of a stressful day yesterday- long story short my hubby took a friend and her daughter to hossie for the mum to have a day procedure operation in Norwich which is an hours drive. Our friend was due on the ward at 7am, so hubby dropped them off and came home.

Bearing in mind the daughter is disabled- we began getting concerned when we hadn`t heard a peep at 3pm. The daughter would`ve had to wait in the waiting room all this time. Neither of them were answering their phones and I couldn`t find anyone who knew what was happening on the hossie phone- it was as though they`d vanished off the face of the earth .  They rung at 7pm.......12 hours later 

Joy xx

Hi Joy,

That's good news.    I'm pleased you're feeling better.   Keep an eye on your thyroid levels though.   My Thyroxine was raised from 50 to 75, then 50 and 75 on alternate days, and now I'm back on 50 mcg a day.   It can change very quickly.

You would wonder what had happened to your friend and her daughter.

That was a long time for a day procedure, they usually chuck you out as soon as you open your eyes after the operation.   Her poor daughter would have an awful day waiting for her.   Did your husband have to go and pick them up. and bring them home again?  

It's another horrible dark day here, it never seems to get light.  I think they have sun down for us on Sunday.  I'll believe it when I see it.

Marigold xx

 

Hi Joy, marigold and everyone.

Sorry, busy week.

How are you all?

I hope none of you were mad enough to go out for Black Friday

I'm not too bad. Always keep some spare meds from when I was reduced in dose in case the pharmacy mess up as they usually do.

Hi Marigold

I spoke too soon, I hit a slump yesterday afternoon and don`t feel too good today. I have to remind myself that I`m only 7 weeks post RAI and this is still early days. I`m having a bit of dizziness which isn`t my normal balance problems so googled it and seems its common. 

I`ll keep an eye on my levels but I don`t think this latest increase has got into my system properly yet. I read somewhere that it can take 6 weeks.

Yes my husband went back to Norwich to pick them up- it was quite a saga as our friend`s op was over by 10am and nobody thought to tell the daughter. And the friend thought they had!  She was waiting all that time to see a doctor, then she never did see one.

Anyway, among lots and lots of other health problem the daughter has no thyroid function at all due to a tumour on her pituatry (sp?) and was telling me on the phone how my symptoms are def hypo and that it`ll take a few months for the meds to work properly......and I`ll be a new woman.  

I remember you saying it took 8 months for you....so I live in hope 

The weather`s miserable here too. 

Joy xx

Hi David

lovely to hear from you and you`re sounding a bit better 

I`m still in the throes of getting meds to a level to suit me. It`s a bit of a roller coaster ride but I still think I did the right thing having RAI. There are def days of a bit improvement but just enough to show I`m heading in the right direction. 

Everyone says it`s a slow progress though.

Hope you`re having some luck on the job front.

Keep in touch

Joy xxx

Hi Joy,

I hope you're feeling better today.  It's still early days.

I've heard it can take six weeks for the increased thyroxine to make a difference, but it worked very quickly for me.   My endo insisted that I had my bloods checked every week.  Every one is different.

Your husband would have a long day too.    It is a saga, but fairly typical unfortunately.    There's a definite lack of communication in hospitals.   It's quite normal to sit for hours waiting to go home, either because you need to see the doctor first or you need a discharge letter.   It's no wonder there's a bed shortage.

Another miserable day here.

Marigold xx

Hi David.

I'm pleased you're not too bad.  

We just went out to do our ordinary grocery  shopping yesterday.    There were a few people staggering out of the shop with TVs, but it was no busier than normal.    If it had been mayhem we'd have come straight back home.

I don't like sales.    In fact I don't like shopping much.    We tend to shop online.

Marigold

Hi Joy

Glad their is some improvement. RAI was probably the right way to go so hopefully it will get even better soon. Some improvement is better than none.

Just had a dose of the virus that is going around. Been going into work as normal, yet they still moan.

Not much around at the moment job wise that is permanent, sadly.

Hope this finds you well.

David

Hi marigold.

Are the shops busier near you now? It's manic where I live. Online is easier, it just means you have to rely on the post, or in my case, a courier who is meant to be here 8am - 4pm but didn't turn up on Monday. 35 mins for him to turn up today. Hopeless.

Hope you are well.

David

I just realised, with my Endo appointment tomorrow, I was meant to have a blood test a few days in advance.

I totally forgot with being unwell

Hi David

I hope you're feeling better.

Yes, the shops near us are getting busier now.   Everyone seems to be in a panic, you'd think they were going to be closed for weeks.  

Some couriers are a pain.    One couldn't find our house and threw our parcel over the wall into a garden at the end of the street. 

Did you see your endo?   I'm sorry you're having problems at work.  I hope you manage to find another job soon.

I'm fine thanks.

Marigold

I

 

Hi Marigold

I'm not too bad thanks.

People do get worried about the shops being closed for a day. It amazes me how people leave things so late too.

Courier problems still exist. They say they came another day and left a card - liars. Now in talks with their escalations teams but that has proven fruitless. Sorry to hear of your experience. Heard about things like that a lot.

Yes, saw my Endo. Pointless though. Didn't say or do anything I didn't know about and the waiting time for an in and out appointment was of no use.

Nothing around work wise that is suitable. Will keep ploughing on hoping I don't lose a job in the meantime.

Glad you are well. Hope that continues and you are ready for Christmas.

Not heard from Joy?

David

Hi Marigold

I'm not too bad thanks.

People do get worried about the shops being closed for a day. It amazes me how people leave things so late too.

Courier problems still exist. They say they came another day and left a card - liars. Now in talks with their escalations teams but that has proven fruitless. Sorry to hear of your experience. Heard about things like that a lot.

Yes, saw my Endo. Pointless though. Didn't say or do anything I didn't know about and the waiting time for an in and out appointment was of no use.

Nothing around work wise that is suitable. Will keep ploughing on hoping I don't lose a job in the meantime.

Glad you are well. Hope that continues and you are ready for Christmas.

Not heard from Joy?

David

Hiya Marigold and David

Hope you`re both ready for Christmas- and good luck with the job hunt David.

Well it`s all happening here, I`ve been on 75 mcg thyroxine and have felt better in some ways but I`ve still been achey, tired and I`ve had nausea again. 

I `m not due bloods for another 2 weeks but went to my GP and he sent me yesterday. He rang me earlier to say my TSH has gone to 9.99.  

Strewth no wonder I haven`t got better. 

He`s doubled my thyroxine to 150 mcg to start tomorrow but I`m a bit concerned it`s a big increase too quickly.  He`s the doctor and ought to know best and I didn`t like to question his judgement.

I think I`ll increase to 100 mcg tomorrow and then see how I go by listening to my body.

I`m pleased to be getting treated as I was better on 75 mcg so I`ll be a new woman on 150 mcg.  I`m a bit disappointed tho because I`m feeling so lethargic at Christmas.....Oh well can`t be helped!

If I don`t speak to you both before- Happy Christmas and healthy new year xxxx

Joy

 

Hi Joy

Merry Christmas to you, marigold and any other poster here.

Been ready for Christmas for a while, I hope you are too.

Job Hunt is not happening right now. No news yet.

I hope your next bloods show better results.

How have you been on the new level of meds?

Merry Christmas to Joy, David, Bess, Sue, Barry, Stefania, Maria and everyone else.   

Like you David been ready for Christmas for a while, we're really well organised this year.   I hope you do better with your job hunting in the New Year.

Hope you're doing ok Joy.   150 mcgs Thyroxine? You'll be jet propelled.

Happy Christmas and Best Wishes to the moderators too.

Marigold

xxx

Hi Marigold, Joy, David & everyone

Just want to wish you all a merry Christmas & all the best for 2015.

Ann

xxx

Happy Christmas Everyone

Good health and blessings for 2015.

I`m reducing to 125 mcg Marigold, listening to my body and its happier on the lower dose. 

Joy xx

 

Hello and Happy New Year Marigold, David and all.

Well, I decided to stick with the 150 levo the GP prescribed me and I`m not doing so good on it.  The good news is that I`ve my endo appointment on 14th Jan, so hopefully she`ll be able to sort me out?

I`m considering going back down to 125 levo as I was doing ok on that - but don`t want to go against my doctor.  I`ve got all under active symptoms but wondered if he`s over medicated me too quickly?   What a mess!

Anyway I`m still only 3 months post RAI so perhaps it is still early days- and I`ve got a blood test due next week, so that ought to tell us something.

All the family have asked us to go on holiday with them next October to Tenerife and I soooo want to be well by then. There`ll be both daughters, their hubbies, and the 3 grandchildren. I`m thinking of trying the Spire for all blood tests like T3, and whether I need supplements etc.....

hope everyone`s doing ok

Joy xxxx

Hello Marigold, am still having trouble finding new posts from you so Happy New Year to all and hope you are doing ok. Lovely to see you are still helping us all as you always have. I am going for a blood test tomorrow, just part of my medication review but, being me, am worried about the results. Am enjoying being back home but have still to change to a new doctor. The one I have had for years is lovely so apprehensive about getting a new one. My last test showed I was underactive, 18 months ago, so hope all is well and they leave me alone ! Are you still have the night time worries and thoughts like me, what a pair we are. All the best for the coming year and home everyone and the old gang, Sue, Barry, Maria, Kat etc are ok. I will try to find recent posts. Take care of yourself.

Bess xxx

Hello Joy. 

Happy New Year.   I'm sure your endo will be able to sort you out.    She should know what's happening when she has your blood results.

I'm sure you'll be fighting fit long before October, and you'll have a lovely holiday with your family.

Marigoldxxxx

Hello Bess.   Lovely to hear from you.    I've just spotted your post, I don't think I got a notification.   Happy New Year.

I hope you had a good Christmas.   We were going to spend the day with our family, but our grandchildren and daughter in law had a tummy bug, so we thought it was best to stay away.    They were going to come to us for New Years Day, but our gdaughter had a high temperature and a nasty cough, so we didn't see them then either.    Just one of those things.    They're all fine now and we've seen them, so that's ok.   We had a very quiet Christmas.

I hope your medication review and blood tests are ok.    Our doctors are always changing, and it's difficult to get an appointment.   The one I see is very good, but I don't suppose he'll be there long.

Yes, I still have the night time worries, I don't think I'll change.  We could have midnight feasts.   I've got some Propranolol now, and I can take up to three a day, but I try just to take one at bedtime.   I'm having lots of migraine auras at the moment for some reason.  I've managed to keep clear of colds up to now (I've probably done it now).   I can't have a flu jab as I'm allergic to eggs, and last winter I had a couple of really bad chest infections.

I hope everyone in the old gang are well too, it would be lovely to hear from them.

Take care Bess.

Marigold

xxxxx

 

Hi all

Just saying hi, will respond more when I can. Got so many annoying health issues right now that i'm a little frustrated.

Hope you are all well and will speak more soon.

David

Hi Marigold 

what a palaver!

I`ve just seen my GP because I`ve been feeling poorly and he thinks I`m still withdrawing from that blimming sleeping pill. 

Because of joint aches and tiredness, I was thinking it was my thyroid. Anyway got my latest blood result and TSH 0.10 (0.35-3.50) T4 18 (8-21) T3 4.30 (4-6) So I`ve gone a bit hyper again. But they don`t look too far out.  Such a shame about the aches and pains and tiredness because I was feeling pretty good at the end of the year but reduced those sleeping plls too quickly.

I`ve also developed high blood pressure and seeing the nurse tomorrow for that- then the endo on Wed.....it never ends

Sorry to see you`re having migraine auras again and hope you son feel well

Joy xx

Hi Joy

I would say your results are fine, certainly nothing to worry about.    I'd be happy enough with those.    It's probably the sleeping pills as your GP has said.     Anyway, see what your endo says on Wednesday.  If it's not one thing it's another.

I'm getting a bit sick of the migraine auras, I always have them, but they are more frequent at the moment for some reason.    I don't know what causes them, I've given up trying to work it out.

It's cold today, but at least the wind isn't quite as strong.

Take care.

Marigold xxx

My blood pressure varies, depending on who's taking it and the sort of machine they use.   If it's one that pumps itself up it's usually high, but if it's one that the doctor pumps up himself it's usually fine.    He always says that they are more accurate.  

Hi David,

I hope you feel better soon.

Marigold

Hi Marigold (and Joy and everyone else)

I'll be fine hopefully. I have many little annoying ailments that can't all be treated at the same time.

I can't keep going back to the GP or they'll stop taking me seriously.

Hope you are all well and marigold's migraine auras improve and Joy gets through her week!

I've had my next Endo appt put back a month due to an error - they really are pointless as nothing ever gets done and he kicks me out after 5 minutes but to put it back doesn't do much for my confidence in them. They told me they'd check me regularly and keep a close eye on it all but no....the NHS sucks - if I could afford private and choose my Endo it would be easier.