Overactive Thyroid Graves Part 4

Hi Leanne and Philippa. Welcome to the forum.

Leanne. Sorry you're not feeling very well. As you probably know Graves is an autoimmune disease which affects your whole body, but especially the thyroid.

Your endo will explain things for you, but take a list of what you want to ask. If you're anything like me your mind will go blank and you'll forget.

If he does think it's Graves he'll start you on treatment and you'll start to feel better very soon. Take care and keep in touch. xx

Hi Philippa. It sounds like you've been in the wars, but you're on treatment now so you'll soon feel better.

I've had Graves for many years together with thyroid eye disease. My eyes protrude slightly, especially the right one. I attended the thyroid eye clinic at a local hospital and

the consultant explained all the options open to me. They could remove skin from my eyelids as they're droopy or remove tissue from behind the eyes, but I don't think they're that bad. In fact since I had RAI my eyes don't protrude so much.

I haven't gained any weight. I lost about one and a half stones when the Graves flared up two and a half years ago, and I've put about half of that back on now that my thyroid levels are more or less back to normal. So I wouldn't worry that you'll automatically put on lots of weight, as you might not.

My liver function tests were all over the place before I was diagnosed with Graves. My GP said she'd seen nothing like them previously and I had to have a liver scan, which was normal. I had them checked recently and they've gone back to normal.

I know neo-mercazole doesn't agree with everyone, but I had no side effects from it.

Graves is an awful illness, but you will get better. Take care.

Thinking of everyone.

Marigold

xxxx

Hello everyone.

Hi Bess. I was going to reply to you before, but it was teatime.

I'm glad you're feeling better. It's only natural that you're frightened, you'll need to get your confidence back. Let me know how you get on with the book and tape. I have plenty of wayward thoughts.

I'm feeling better now, but still tired. When I mentioned the auras to my GP he asked if I was anxious about anything and I said that I wasn't. However, our son and family were in South America for three weeks visiting our daughter in law's family, and their luggage didn't arrive for a week. So there they were with two small children and no luggage. I wasn't conscious of being worried, but as soon as they got back home the auras stopped. So it probably was anxiety. I'll have to try and stop worrying, easier said than done.

Let us know how your appointment goes. I expect Sue will have had some dramas while she was away. It wouldn't be Sue if she didn't have an adventure. xxxx

Hi Ann. It sounds like things are heading in the right direction. Graves affects every part of your body, so once your levels are in the normal range I'm sure you'll feel a lot better.

You're having a year and a half. I'm sorry about your daughter. I agree with Deb, drink drivers aren't punished enough, and the same goes for people who insist on using their mobile phones when they're driving. Take care. xx

Hi Deb. I like my own bed too. If you've gone away I hope you have a good weekend, and if you haven't gone I hope you still have a good weekend. xx

Thinking of everyone. Sue hope you've had a good holiday, and we're waiting to hear about your adventures. xx

love,

Marigold

Hi Everyone,

I am so sorry that I haven't been on for over a month and welcome to all the new members this is a great place for help and advice especially from Marigold the fountain of knowledge!

Mum was discharge from the rehab centre last week on her 91st birthday, back to the warden controlled flat with a care package where they were suppose to go into see her 4 times a day. Well lets just say that the career that was suppose to go at 08.00 am didn't turn up till 10.30!!!! The long and the short of it Mum had another fall on Tuesday and is back in hospital, luckily no bone broken this time!!! After lots of shouting from me and my brother the hospital has decided to refer mum to a social worker to find a placement for her in a care home, At last we might be getting somehwere, poor Mum doesn't no if she is coming or going and definatley does not want to go back to the flat and won't come and live with us, she said that we are too far away from my disabled sister, what can I do.

Anyway as you can imagine I have been negetling myself a bit, so feel under the weather, I have a blood test Monday and an appointment with the practice nurse, couldn't get an appointment with my DR.

Sorry for the spelling mistakes doing this while travelling in the car....

I hope you are alll doing OK.

Take care and keep smiling

Love Maria xxx

Hi everyone ,i am back from my holidays with a nice tan even though i didnt sit in the sun much ,must have been the breeze.It was a nice hotel and the food was lovely you could tell the quality from other hotels ,my bedroom was small and narrow a bit old fashioned same as the bedding lol,the bathroom had been modernised with a long shower unit that would fit 2 in ,it also had a glass sink in green which was quite small ,you couldnt have got your feet in it not that i could have got my legs up that high and the view from the balcony was an eyesore ,i couldnt fault the staff as they were all pleasant and hard working and the manager was wonderful .I got there late on monday night and they had food waiting for us and a drink.On the thursday night i came down with gastric enteritis ,on the friday i had to have a doctor out to me it cost me 100 euros then 20 for medication ,i slept for 2 days on and off and it was the following thursday before i could eat any thing ,..the hotel is one that the cruise use as cruise and stay and they had the norovirus on board some having had it or still had it ,so all in all i lost a week of my holiday ,i am thinking of putting a claim in .there was 250 on the cruise that had the norovirus

.since i have been back ive had to do my garden and loads of holiday washing ,plus i have my daughters cocker spaniel who thinks its ok to wake me at six for a treat so i am knackerd lol . will have a read through all your posts and welcome to the newbys

thinking of you all

take care sue

Hi everyone.

Professor Marigold, fountain of knowledge (Idon't think) is a bit puzzled.

I had my bloods checked on 9.4.2013, the first time for a year and they were

TSH 5.31. T4 15.

The T4 was a bit low and the TSH a bit high so GP increased my thyroxine from 50 to 50 and 75 alternate days.

Checked again 17/5

TSH 2 T4 16. Just right so continued on the same dose of thyroxine.

Checked again last week

TSH 3.2. T4 20.

It seems to have changed a lot in 5 weeks. The T4 is going too high, and why is the TSH going up? You would think it would be going down.

Can anyone help? I have just been reading about TSH in my position of professorship, and it says it can vary depending on the time of day, being at it's highest early morning.

Has anyone else heard this? Any comments would be appreciated.

Sue, I'm sorry you were ill when you were on holiday hun. Are you back to normal now?

It's horrible coming home with a pile of washing.You'll be ready for another holiday.

Take care.

Maria, sorry to hear about your mum. It's awful trying to get help. We were worn out looking after my mum, we couldn't get any help from anywhere.It got to the point where we were going to have to find a place for her in a care home, but sadly we were overtaken by events.It meant that her last days were so sad.

Try and get some rest when you can, difficult I know. I hope your blood test is ok.

Take care.

Thinking of everyone.

love,

Marigold

xxx

Morning Professor lol ! You results are confusing arent they Marigold although I did read of someone who said that if her TSH went above 3 all her others went up to. Are you having another blood test soon, I would think your TSH will probably be back down again next time. Its horrible when we dont know whats going on but I suppose things go a bit awry from time to time and then settle down. How are you feeling ?

Sue, I just knew you would have an adventure ! Hope you are ok. Maria, thinking of you,what a distressing time. lots of love to you.

Hope everyone ok, this is a quick post as I'm still in my pyjamas, tut tut ! Had an outpatient appt. with the cardiologist yesterday who was very reassuring, said I had done the worst bit and although my heart wasnt pumping properly, medication would help and I should get out and walk and enjoy the summer. What summer ? Still, I had a terrible panic attack last night, heart thumping away, thought I was going to die. It stopped after about 30 mins. Its scary feeling ill at night.

Will catch up on posts soon, am thinking of you all. Barry, how are you ? Marigold, let us know how you get on.

Love

Bess x x x

Hi all, as I posted previously I am waiting for an appointment with endocrinology (19th July). But on Sunday I experienced some very bad and quite scary heart palpitations not a racing heart just pounding like mad in my chest, I went to the out of hours doctors who has put me on propranolol ( only 10mg to start with) is anyone else taking beta blockers?? And I was wondering when they eventually get my thyroid under control will I still need to take them??? I am not one for taking medication so am hating all this at the moment!! Help

Hi Leanne, when my thyroid first kicked off I was on Propanolol 40 mgs. three times daily and it only just did the job. My heart was racing and banging against my ribs, it was so scary ! Propanolol was brilliant for me, dont know what I would have done without it. Dont worry about taking it, just go with it and when your thyroid is ok you wont need it any more, it may take a while though. Most people with overactive thyroid are put on it. If the dose you are on doesnt work just ask if you can increase it, you'll be fine. Thinking of you, hang on in there !

Bess x

Hi Leanne.I was on a high dose of Propranolol too, and like Bess I don't know what I'd have done without it. You'll be able to come off it when your thyroid settles down. Take care.

Hi Bess. I'm glad your appointment with the cardiologist went ok. Panic attacks are awful especially during the night. Any problems seem worse then, you feel like you're the only one awake. You're right about the summer. What summer? It's horrible here today, cold and wet. If the sun shines, just leave the housework and everything and go for a walk.

From what I've now heard, following RAI as long as the TSH shows some activity it doesn't really matter what the level is.Anyway I've reduced my thyroxine and gone back to 50 mcgs as my T4 is too high at 20. It's still in the normal range, but I feel better when it's around 16 or 17, and I've booked another blood test in a month so we'll see. I feel fine except for tiring easily, but that's probably old age.

Hope you continue to improve, and keep your chin up. xx

Hope everyone else is ok.

love,

Marigold

xxx

Hello everyone

Marigold it is confusing when levels change like that, mine have gone like that before and it's confused me as to which way there going , I have read as well that depending on the time you take your thyroxin and how soon after you have your blood taken can alter the levels so I have mine taken the same time every time I go .

I hope your well x

Marie sorry to hear about your mum, I hope you find somewhere nice for her soon x

Aww sue sorry to hear you was poorly on your holiday , I would make a claim if I was you x

Bess I hope your feeling better now, do they know what cause you to be ill . Glad your on the mend now x

Hi Leanne I was on 40 mgs of propranolol 4 times a day last year and they helped loads, I'm back on them again now but only 10mgs a day . Don't be scared to take them as you will need them while your over active x

I've been to the doctors again with my ears as they still hurt and I'm still going dizzy, they have now said I've got a fluid build up in the inner ear, gave me some tablets again. I just wish they would clear up as I've had it for weeks now and still avoiding going out because of the dizziness . Back on 10 mgs a day of propranolol to help with the anxiety , I'm due for a blood test on Monday so I hope my levels are somewhere near normal this time fingers crossed .

Take care, Deb xx

Hi all

Thanks for the advice on my last post (and for letting me waffle on) everyone : )

Leanne47, don't worry about taking beta blockers. Apart from keeping your heart calm and taking some of the stress it's experiencing away, I find that as an added benefit, I'm calmer too! I've been on beta blockers for just over a month, and have been on neomercazole for a month, and the endo hasn't even mentioned me coming off the bb yet.

It will definitely help while you wait for your appointment, and I was told that it will apparently help to get you through the first few months of treatment while your thyroid levels start to drop and normalise, all the while helping your heart out.

Has anyone had a problem with their ALP levels?

xxx

Hello everyone

I hope your all enjoying the lovely weather .

Philippe what is ALP levels ?

I've had my blood results and I'm very confused by them.

Had my bloods done every three weeks and my tsh came down from 80 to 63 then I think it was 47 then to 27 and this time they have only gone to 22 and my T4 16.

There was a big drop on my tsh until this time and I've stayed on the same dose of thyroxin. My doctor as tried saying I must be missing my tablets but I'm not.

On the upside I'm feeling much better .

How's everyone doing ?

Take care Deb xx

Hi all

I'm glad the weather seems to be brightening and heating up for you all : )

Deb, I went for an FT4 and liver function blood test, which showed that one of the liver enzymes, the ALP (alkaline phosphatase) level, was high. My doctor got me to do a bone ALP and another liver ALP, apparently the two biggest sources of the enzyme, after kidneys and placenta (def not pregnant!). Bone ALP 'very high'.

Now my doctor has referred me to a bone doctor to see how much damage my thyroid has done to my bones. I've read that undiagnosed and intreated Graves/hyperthyroidism can cause some osteoporosis, which is worrying, and I'm only 32. Apart from the osteoporosis part, I'm worried that it could be caused by something else, and that I have to go through invasive procedures.

My doctor is not the most reassuring or explanatory, which is annoying. I'm just so sick of going for tests and finding out that I have to do more tests. I just want a definitive answer, and to then get on with things!

Has anyone else had probs with their ALP levels?

Deb, could your thyroid levels just be a result of diet change or stress etc, over and above the thyroid? I'm always confused by my results and which result is which, also by how slowly they seem to get better. Perhaps the change in levels speeds up at the beginning of treatment and then slows down to a steady loss. Mine have tended to fluctuate a bit too. My doc doesn't seem too concerned with that, as long as they are getting better (even slowly but surely).

xxxxx

Hi Phiippa

I posted on this forum last year. I was diagonosed with graves disease Easter 2012 and have been taking carbimazole since than. I am on a maintenance dose of 5mg of carbimazole a day since last July and my levels have held stable.

However when I was first diagonosed, my ALP was very high with Bone ALP. They did do the test to see which source it came from liver or bone and it was all bone. I was sent for a bone density scan last october and it came out poor. not really poor like osteoporosis level but poor compared to what it should be. I was just advised to take chewable calcium tablets.

Once my thyroid levels stablized since christmas 2012, my latest ALP tests have all been in range now since december 2012 so once the graves is under control, i have a feeling that your ALP might also come down. So this has been my experience and there were no invasive tests involved.

Also I have never broken a bone in my life, I am quite active and did fall in the street quite heavily a few months ago and didn't break any bones so I am not convinced that I really have anything to worry about and I decided to not wind myself up about this. I am a petite person in frame so my bone density is never going to be as much as a person with a larger frame.

I just wanted to write to you my experience with this in case it helps.

I haven't had a chance to catch up completey with posts but hope everyone is doing well and enjoying the sunshine.

Best, Marie xx

Hi All,

I'm after some advice please.

I have been on block and replace for Graves for the last year after being diagnosed with my results 'through the roof' so my Endo said, with 125mg thyroxine and 40mg carbimazole. I stopped this 2 weeks ago so we can look at progressing my treatment and with me due to get my bloods checked two months later unless I felt poorly before. The thing is, I'm not sure if I'm poorly. About three days ago I started feeling really dizzy, clammy, sick and like I wasn't in my own body is probably the best way I can describe it. I don't want to be premature in contacting my doctor if this is nothing like how I'm meant to feel but also I have TED and don't want to wait longer than I have to at the risk of that getting worse.

I hope that makes some sense. Any opinions appreciated.

Ami