Overactive Thyroid Graves Part 4

Dear Marie Rose (and all)

Thank you so much for your very kind reply It really has helped my nerves and what little sanity I have left. Doctors can be quite scary at the best of times, and personal experience like yours really is invaluable.

My doctor also came back to to me to say that I shouldn't panic and that it is quite common in Graves' patients, so today has been better that the last two. My appt is only 12/8, and having more bloods taken at the end of July.

BTW, I have also never broken anything or even had fillings, and have a small frame. Apparently my granny had to have 'iodine treatment' when my dad was growing up in the 1950s and was later diagnosed with osteoporosis. Damn genes!

Will def be going to the pharmacy this weekend to stock up on calcium tablets, and scrambling for sunshine.

Hope everyone is doing well xxxx

Hi Philippa

You sound similar to me with your frame and I read an article that small framed women are always going to be at a disadvantage with bone scan tests.

I looked up my blood test in case you want to compare your level to mine, in Easter 2012 when I was first diagnosed my ALP was 222 with the range of 40 to 150 so high but not really that high. Thyroid levels were also high back than, than I got stable and the last two blood tests one in January and one in April of this year my ALP was around 100 with those same ranges. So in range for this whole year now. My endo was very pleased and she is happy for me to remain on carbimazole indefinitely which is good news for me as I feel good. Hope it lasts as thyroid disease is tricky and we are all different but I know my body well and can tell if I am being over or under medicated.

You are right not to worry so much. Stress is the worst thing for Graves disease. I hope everything works out well for you. It takes time but you are going in the right direction. Hope everyone else is well.

Best, Marie x

Hi all, just had my propranolol increased to 80mg daily and I have an appointment with endo tomorrow, I had a neck ultrasound 2 weeks ago and they found I had a 2cm nodule on the left side, all the ultrasound woman said was "right wait for your endo appointment as he will probably want to stick a needle in that"

Afterwards I thought of all sorts of questions I should have asked, so next day rang my doc (as i was worrying) and asked him to explain, he looked at the notes from hospital, I just wanted my mind putting at ease, but he said oh yes there is a nodule there which needs investigating!!!! I have spent the last 2weeks panicking....(as we do). Just wondering if anyone else been in this position, doctor said sticking a needle in is not a very good way of putting it and explained it would probs be a biopsy of nodule.....

# worrying

Hi everyone, how is everyone coping with the heat wave .leanne i had to have a biopsy on a nodule in my neck ,it was a bit uncomfortable but it doesnt take long so dont worry .

well i have just had my blood test results since taking armour thyroid T4 9.8 pmol/L ref (9.0-23.0)

TSH 0.14 mu/L ref (0.20- 4.50.Marigold i need your help please ,,,,i have been feeling great on armour but the last few days feeling sluggish and moody plus a bit shaky .I have just had an ultra sound on my neck ,the doctor that did it said i need a camera down to see whats causing me the dry mouth and throat and constant tickle that makes me cough ,my doctor agreed with me that the rai could have damaged my saliva glands but instead of giving me something there and then he said wait untill after the scan but the doctor that did the scan said she could see my saliva glands but could not tell if they were working

so back to the gp as i really need something ,the only thing is i am so fed up with doctors and hospital appointments ..I have mangaged to loose a stone and a half but now stuck at same weight Oh the joys of thyroid problems.

Marigold how are you and the family .

bess how are you doing ?

just a little story about my grandson ,my daughter bought him a bag for life from marks and spencers with peppa pig on it ,well they were out one day and he saw a women walking with one ,the little so and so went up to her and said excuse me but could i look in your bag ,she let him look ,he said thankyou only i thought it was mine but mine must be at home .the women couldnt stop laughing at him

Hope everyone else is coping and enjoying the summer we dont normally get ,i keep telling mine think of the cold dark days wrapped up in coats lol

love sue

Hi susy1, was your nodule ok?? Hot or cold nodule? When I went to my endo appointment he was a bit unsure of things so I have to go for RAIU test(is that right) and the biopsy, he wasn't really sure if it was the start of graves so am none the wiser at the moment!! Just a bit frightening when they start talking about the possibility of cancer, And to make matters worse i haven't got a clue really what you lot are talking about with all the test result numbers etc...haha

Hi Gang!I hope you've all survived the heat. I don't know about everyone else, but I'm glad it's cooled down a bit.

Hi Ami, and welcome to the forum. Are you still feeling poorly? If you don't think you feel right, and you're worried ask for a blood test and then see your GP.You know better than anyone how you're feeling so I'd get it checked out. Keep in touch.

Hi Deb. Are you feeling any better? Have your bloods settled down? I had mine checked last week, that's the easy bit, the difficult bit is getting a sensible answer from the surgery.

Everyone I speak to tells me something different.

Philippa, my LFTs were all over the place when my thyroid levels were high. I had a liver scan which was perfectly normal, and once my thyroid levels were back in the normal range

my LFTs were normal too. Most blood tests I had done at the time came back with abnormal results, but they all went back to normal.

Hi Sue. Your T4 is low. I like mine to be around 16 or 17, although I don't know where it is at the moment. So what's going to happen about your saliva glands now then? Saying she can't tell whether they're working or not is no answer is it? Its hopeless trying to get help.

Your little grandson is a funny little boy. Our grandson is only 15 months, but he's so funny. He goes and gets his shoes, brings them into the living room, hitches his trousers up so someone can put them on, then points at the window and says OUT! He's on the go all the time, pointing at everything and saying 'wot dat?'.

Leanne, try not worry, I'm sure things will turn out fine. We're all just muddling our way through most of the time when it comes to test results. If one person doesn't know the answer then someone else probably will. We all try to help each other. Take care.

Bess, Kat, Barry everyone else hope you are all well.

love,

Marigold

xxx

Hello everyone

I'm glad the weathers cooled down

I've had another blood test and I'm not happy with the results as I thought my tsh would be back to normal by now but it's worse.

T4 is 15.4 was 16 on my last test , TSH is 25 and was 22 on my last test.

All the doctors are saying is I can't be taking my tablets every day but I am, they said this last month as well and really annoying me now. No one as said I should increase my thyroxin but I'm going to anyway as the 100 I'm on clearly isn't enough.

I can't understand why my levels had a big change when I was first put on 100 mgs and now it's not enough, as anyone else had this?

I've rang my endo and been told I will get a letter in the post, this normally takes them two weeks why can't they just tell you on the phone .

Sorry for having a moan but just so fed up now of the endo and doctors . Had my rai in January and thought by the end of July my levels would be somewhere near normal but tsh is still way off.

I've got to go for a scan as I've now got a swelling on my neck and my ears still arnt right .

Hoping everyone else is felling ok

Take care Deb xx

Hi Deb.

I've sent you a message.

Marigold.

Hi All

Hope everyone is doing ok?

I wonder if someone can help me with my latest blood test results please. I had my blood tested a couple of weeks ago, my T4 level has reduced to 19.1 (previously 24.1) & TSH still suppressed at 0.02 (as before).

I thought the normal range of T4 was between 18 - 22? with the above results I thought I was now in the normal range but I have spoken to a nurse in the Endo dept who said I need to get the level down further t lower than 16? she then tried to tell me that because my blood test had been done at my GPs it was measured differently.

I have spoken to this nurse previously, she rang me back after I called to get my blood results in early July when T4 was 24.1. During the conversation she advised me to increase my dose of Carbimazole from 30mg to 35 mg per day. I tried to explain that increasing the dose gave me joint problems and made my arthritis worse. A discussion also held with the Endo during my visit & it was agreed we should leave the dose at 30mg daily, this was subsequently confirmed by telephone by the Endo's secretary then followed up by letter. The nurse appeared to give the impression she knew more than the Endo which annoyed me, surely the Endo is the one who knows best.

Also can anyone tell me if I do continue to have a reduced T4 level I assume I will go underactive? Does that have any long term effect? or is it reversed when your levels increase again? I have been feeling quite lethargic & tired and very cold sometimes, it was 24'C in the house the other night but I had to put on a long sleeve cardigan & also padded body warmer!

I have another appointment next Tuesday with the Endo when I expect arrangements will start to be made for my operation, this I am really not looking forward to.

Best wishes to all

Many thanks

Ann

Hi Ann.I'd take notice of what your endo said. The normal range for T4 was 11 to 22, but I was told they've now raised the upper level to 25. Did your endo say how low he wanted your T4 to be?

I would expect that when you have your blood checked at your GPs it will go to the same lab to be checked as when you have it checked at the hospital. The result shoudn't be any different.

My bloods are within the normal range, but I'm often too hot or too cold. I don't seem to do warm any more. I was shivering one day when it was very hot.

Take care,

Marigoldxx

Hi Marigold

Thanks for message.

Endo didn't say how low it needed to be but I'm seeing her next week so will be able to ask the question. My GP is in a different area so the tests will be done by a different hospital, I chose to go to a different hospital in view of the issues I had with the local guy who I really did not like. He didn't listen to what I was saying & I did not trust his advice at all. When I started originally on the carbimazole he increased the dose significantly overnight which made me ill, I felt really spaced out all the time & as if I would faint at any moment, he also gave me a high dose of beta blockers, too high in my view, I ended up in A&E as I was extremely unwell. The endo then put me on a high dose of PTU which gave me all sorts of side effects, swollen joints, heart burn, itchy rash, when I went back to see him and mentioned all these issues he sat there and said there was no way they were connected to the PTU & I should see a physio re the swollen joints! he then thrust his little book at me which listed the known side effects & said look none of the ones I had were listed so there was no way they were connected. I was really mad, I knew they were all side effects as was proved when I came off the pills, the side effects all disappeared! So as he is the main man at my local hospital I refused to go back & chose another hospital in another area.

I've just been speaking to a friend who had her thyroid removed a few years ago who said her T4 had dropped to 19 so they had lowered her thyroxine dose & now she is suffering with all sorts of issues. So someone must think 19 is a low level!

I sometimes wonder if the medical profession know what they are talking about!

Best regards

Ann

Hi All,

Sorry that I haven't been on for a while but I have been doing battles with social services with regards to getting Mum into a care home. The long and the short of it that as of last Monday Mum went into a care home which specialise in Dementia care and she loves it.

I hope everyone is doing OK I need a bit of help understanding my last blood test results TSH 1.99 T4 14.1 not sure what the range is anymore so a bit confused

I see that we are back to the normal british summer, sun, cooler temperatures and rain!!!

Take care and hope you are well. Well as welll as you can with our Thyroids

Maria xx

Hi everyone.

Maria. Your results are fine. The normal range for T4 is 11 to 22, and TSH 0.4 to 5.0.

I'm so pleased your mum has settled in the care home, it'll be a weight off your mind.

Take care.

Hope everyone else is ok. Bess, how are you doing?

Marigold

xxx

Hello everyone, hope you are all doing ok. Marigold, I have been having a busy time with one appointment with the cardiology dept after another, I am so fed up with it. I am doing ok, and been told to walk 5 miles per day ! Tomorrow and Wednesday I have to have heart scans. I am dreading tomorrow because they inject something into the vein to make my heart race, and then scan the heart as though I am doing strenuous exercise. I am scared stiff. Then on Wednesday the heart is scanned again at rest. They want to find out if my abnormal heart beat is due to a previous inju ry or illness, i.e undiagnosed hypertension or viral illness. I am wondering if all those terrible thyroid symptoms, racing heart and irregular beat caused the damage. Wish me luck ! I hope you are all ok, are you all right Marigold ? and Sue how are you hun? Will post properly soon, love to all. (Wishing I wasnt such a coward !).

Sorry, I didnt sign off properly, what a twit. ! Love

Bess xxx