. I am currently taking 75mcg of levothyroxine and I have Graves disease. My endo won't give NDT says it's too complicated to manage. I am feeling terrible, stiff and so much pain I can hardly move somedays.
I had my thyroid out 30 years ago and was never told I had Graves' disease. It's only after having respitoryfailure in France this year that I was diagnosed with hyper active thyroid . They scanned me and said my thyroid had grown back and I was being poisoned with high doses of thyroxine. I was on 300mcg and had been telling my GP for two years how ill I was and felt thyrotoxic. My GP just said I was in range although on the high end. My TSH was 0.00 but they said they didn't take that into consideration.
I am now paying to see an endo privately who took me off all levothyroxine and has been slowly building it up from 25 mcg till now six months later 75mcg. I have bloods done again in four weeks.
I am exhausted all of the time not sleeping but it's the pain and stiffness I struggle with . So I am going to try T3 as a last resort but I don't have a clue what I am doing.
Any advice would be a real help.
Tanya
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Tanya-B
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As we so very often have to say, in order to try to help, it would be very helpful to have any test results you have. If you don't have them, ask your surgery. They should provide them - it is your right and you do not have to provide any reason - but they might make a charge.
You need the name of the test, the result, and the reference range (usually in brackets after the result. Something like FT4 15.0 (11.0 - 22.0).
If you can get them, and post, it will enable some sense to be made of what has happened.
Ok so after the respitory failure I was taken off levothyroxine completely by my GP here in the uk. My results 8 weeks later were ...
TSH 6.28 (0.35 -5.5)
Free T4 7.8 (9-24)
No total T3 results, not sure why.
Now after6 months and gradual increase of levo , at 50 mcg my results were on the 05/01/17
TSH 3.01 (0.35 -5.5)
Free T4 11.5 (9-24)
Total T3 1.4 (0.9-2.8)
After these results Dr Toft 'private endo' has increased the levothyroxine to 75mcg a day. I have been taking it for four weeks so four more to go before blood test to determine results.
Dr Toft will not give me NDT even though I have asked several times, he says it is to complicated. I don't understand an awful lot although I am learning more and more.
In the last six months I have gained a stone and a half and I can't lose it. I am exhausted and breathless although I have asthma but it seems to be worse since the respiratory failure. I am so stiff some days I can hardly walk. I have never been like this I am usually hyper driven and full of energy and joy. I spent 2014-16 renovating a house and setting up a B&B now I don't think I will be able to open it in April. I am not depressed but I am ill and struggling to manage everyday tasks. Is this Graves' disease as I beginning to think it must be something else.
Sorry for all this info just trying to give all the facts.
Hi Tanya-b you sound like you had very incompetent gp looking after you, they were obviously out of their depth and should have referred you back to endocrinologist.i find your post a bit confusing,you have graves and are hyperthyroid you surely should be on block and replace therapy not just levo, could you post last bloodtest results so we can be better informed and can advise you what is best thing to do.
My GP didn't have a clue and I certainly didn't. I had 7/8 of my thyroid removed at 22 but was never told I hade Graves' disease. I was put on levo and never questioned anything didn't think much about it. I never felt well was always hyper but very driven so it helped my career. It was only the last few years that I started to feel very ill I kept telling my GP there was something terribly wrong he just said it was stress or depression. I told him I had constant palpitations and felt hyper. He just dismissed said I was high end of rage but normal. To be honest I didn't understand what that meant and was embarrassed to ask. I paid to see a rheumatologist because I was in so much pain and she said fibromyalgia I didn't really believe that and told my GP I thought I was thyrotoxic he said no.
Anyway it was after respiratory failure in France that I was diagnosed as thyrotoxic and told I had Graves' disease and that antibodies attacking what was left of my thyroid had caused it to grow back and that as a result the thyroxine I was on 300mcg was poisoning g me.
After I returned to the uk my Gp was defensive and didn't believe the thyroid could grow back. Once I had a ultra sound and he got the results he admitted he didn't know anything about Graves' disease . Now I am seeing a Dr Toft in Edinburgh privately. I am also learning so much and feel an idiot that I never knew anything about my thyroid disease. I am 54 so it's 22 years after my surgery that I now know what was the cause.
My results now on 50mcg of levo are ..
TSH 3.76 (0.35-5.5)
Free T4 11.3 (9-24)
Total T3 1.4 (0.9-2.8)
These results were on 5/1/17 dr toft has increased my levo to 75mcg I will have bloods taken in 4 weeks.
Don't beat yourself up about not knowing about your thyroid we all just assume that the gp's know what they are doing, I've had graves for 20yrs and had Rai 7yrs ago it wasn't till a few months ago that I found this forum and I have learnt so much from these good people.im no expert on this but from your bloodtest results your thyroid is struggling, Dr toft is a very good endo and you couldn't be in better hands but there are things you can do to help yourself,make sure you take levo at least one hour before food or two hours after food with just water nothing else, you don't seem to be converting T4 to T3very well so you could try taking selenium 200mcg daily this will help with conversion,have you had your vitamin levels checked as very important to have good levels suggest B12,D3,ferritin and folate to be checked as these are the ones we are usually low on.make sure any supplements you take are 2hrs away from levo and if iron at least 4hrs.y you need to get all these at optimal levels for levo to work at its best, don't start them all at once, do one at a time then add next one couple of weeks later so if you have a problem will any of them you will know which one it is.i know this is a lot to take in a at once, just take it step by step and you will get there. I'm sure others more knowledgeable than me will be able to advise you on the NDT, best of luck
Thanks Raventhorpe. I have felt an idiot not informing myself I have panick attacks reliving different events over thirty years and realising it was down to thyrotoxic hyperactivity. My husband left me because I moved house every two three years and I was like a thing possessed renovating houses. My kids use to scream at me to stop and I use to cry and say I don't know how to work any other way.
On a positive though If I hadn't met my French husband I would never have been in `France and been diagnosed.
I did start all of those vitamins but I couldn't keep them down so now it's b12 and calcium and magnesium but I have a permanent upset tummy . But I shall add them slowly.
Thanks for your advice isn't it amazing we have this site?
It's very early days with Dr Toft and as everything in the Thyroid world takes time don't expect instant results, it doesn't work like that. It can't be speeded up. I know that doesn't help when you feel so rotten but it sounds like you have been badly treated for a while. Not all your symptoms could be down to your thyroid directly but having a thyroid problem does deplete our minerals and vitamins so the ones that help your thyroid are Vit D, B12, Ferritin and Folate. Ask your GP to test those and then get your results and ranges and we can comment. Being in range isn't good enough as we need them to be optimal for us which is often high in the range. If you need to supplement and I'd be very surprised if you don't then don't start them all at once, that way if something doesn't agree with you you will know which it is. Leave about 1-2 weeks in between. I would start with Vit D I was reading this morning most in the UK are low and you are further north than most plus it's winter so the sun isn't helping us! That and B12 should help your aches and pains as well. Read up all you can
Yes I am learning lots about vitamins and adding them slowly as I was very sick trying to take them all at once. Good to know Dr toft is a good one , I thought he was as he has been so NICE and written to my GP reprimanding them.
I shall get my levels tested and try to be patient. Wish I lived somewhere warm as the sun really helps.
You can get a vitamin b 12 mouth spray from holland and barrat which would help if you are getting stomach problems with the vitamins , just spray it under your tongue
Hi Tanya-b Rai is short for radio active iodine treatment, it's a radio active iodine tablet that you take under controlled conditions at a hospital, for people with Graves disease it knocks the thyroid out so stops it working but it leaves you hypo so on meds for rest of life, it doesn't cure graves as that's incurable just stops antibodies attacking thyroid.this is such a horrible disease to have and I feel for you if you click on my face you will get my profile up and see I have been through some bad time as well, it does get better but as silver fox says everything with the thyroid takes time. The stomach problems seems to go hand in hand with thyroid problems I was on omeprazole for acid reflux until I found out on here that my problem was not enough acid in stomach not too much as gp thought, so weaned myself off omeprazole and am now taking raw apple cider vinegar and lemon juice 10mins before I eat and that's really working for me. Keep reading the posts on here as you will learn so much, really hope things get better for you soon.
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