I just had my Medichecks TSH Receptor Antibodies result (the first time I've had this done) The doctor's comment was "Your thyroid stimulating hormone receptor antibodies is normal. This is reassuring as these antibodies are positive in autoimmune thyrotoxicosis such as Grave's disease hyperthyroidism."
I was diagnosed as hyperthyroid in 1987, was given Carbimazole and Propylthiouracil for 2 years, then Radio Active Iodine Treatment in 1989. I have been hypothyroid ever since. I was told at the time that I had Graves disease.
In recent years I've had several TGAb tests which are all been negative; plus several TPO Ab tests which are positive (though not very raised eg 48 / 54 / 43 (0-43)
As I have positive TPO Abs, but negative TSHR Ab and TGAb tests, does this mean that I have had Hashimotos all along, with a swing to hyper at the beginning?
Would a scan help show if I have any thyroid left, after RAI or Hashimotos?
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TaraJR
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I'm afraid this happens all too often. But, yes, I would say that you did have Hashi's all along, and this is what happens when endos are too arrogant to do the right tests. They think they know best, and the testing isn't necessary. I'm so sorry you lost your thyroid.
I'm afraid I don't know what the scan would show. Might be nothing left.
Thank you greygoose . Having searched though all my medical records, I had a feeling this might be the case. I don't know what antibody tests were available in the late 1980s, but I think they all were.
Maybe this answers the question of why I was ok on T4 for 25 years, then got increasingly ill, ending up being unable to stand unsupported. Hashi's was finally killing my thyroid?
T3 gave me my life back, almost literally. It was taken off me after 6 weeks (cost!) and it's still a battle with Norfolk CCG to get it back for everyone.
No, I think that the problem was more likely to be that your conversion was getting worse and worse, which is why taking T3 made you feel well.
I can't imagine there was much thyroid left after the RAI, and your blood test results would have confirmed that. Had your thyroid then got smaller and smaller, producing less and less hormone, your TSH and FT4 would have reflected that and your dose would have been increased to compensate. In any case, as soon as you started the levo, what was left of your thyroid would probably have stopped producing hormone, anyway.
Did you ever have your nutrients tested? Vit D, vit B12, folate, ferritin. They all need to be optimal for you to convert T4 to T3. However, being hypo will reduce the production of stomach acid, meaning that digesting food and absorbing nutrients will get harder and harder. As nutrient levels drop, conversion will get worse and worse, and your FT3 level - which is rarely tested! - will drop, too, making you feel worse and worse. It's low T3 that causes symptoms.
My levo dose got gradually increased over the years up to 175, but my T3 levels were never good, ending with T4 at the top and T3 at the bottom. I've always had low iron/ anaemic, from age 11 and need supplements from time to time.
Yes, I keep checking that, Vit D, Vit B12, folate and ferritin. When I was very ill, my Vit D was very low indeed (18) and I keep it at a good level now.
Then you are a very poor converter, and that's what is causing your problems. You need T3 added to your levo. You will never get well on levo alone, I'm afraid.
Yes I was very ill indeed for 2 years 2014-16, my GP even mentioned CFS. But after learning so much on here, I kept asking my endo about T3. GP gave me 6 weeks worth, and I got my life back. He wasn't allowed to give me any more (cost), so I'be bought from abroad ever since. Recently in Norfolk they agreed that T3 could be prescribed and I've just got another 6 weeks from my endo. But Norfolk seem to be changing their minds again, as NICE 'does not recommend it'. We are fighting this hard in Norfolk. But I may not get any more!
I was fine on Levo for 25 years though, before all that happened.
I live in Norfolk too and was told I was hyper in 1997, then hypo, at which point I was referred to an endo. Awful experience. I tried to put my point of view (NDT v levo T4) and he called it "pure quackery" !
It was only through getting my own testing done through Medichecks in 2017 that I found it was Hashis. All those years and I had never known. The way the NHS treats us thyroid people, really is a scandal.
grumpyold thank you. Norfolk is probably like a lot of places - not good with thyroid disease. If you're interested I help to run a Facebook group for Norfolk thyroid patients?
You could have had Graves antibodies at the time but they are in remission now. Difficult to know if you weren’t tested back then. I have Graves and all 3 thyroid antibodies have been positive at one time or the other. So you could say I have Hashi’s as well, but I’ve never been hypo without it being drug induced (ie too much anti thyroid med). I’m currently technically in remission with negative antibody results. My TPO sometimes strays just into the positive range and then back again.
Probably never had Graves then. Often GPs and endos assume that any overactivity is Graves without testing properly. Then they refuse to believe it when the patient becomes very underactive.
TRAb will only be elevated in a Graves' patient when the Graves' is active. The disease naturally relapses and remits, and may do this even after RAI. If someone who appears to have Graves' doesn't have elevated TRAb, good practice is to consider a thyroid uptake scan, which shows a different pattern for Graves' than other causes of hyperthyroidism (eg 'hot' nodules). However, I don't know whether this guidance would have been around when you were first diagnosed or whether this pattern would be evident if the Graves' wasn't actually active (probably not).
Hi Tara , in Graves , TRab levels can (and often do) go down again ~ the fact that they are within normal range NOW , does not mean they were not the cause of your high T4/T3 levels many yrs ago.
It's perfectly possible you did have over range TRab causing high T4/T3 (Graves)
Most Graves patients have mildly raised TPOab levels... off the top of my head , i think about 90% of them do , ( may have been 70%, i've forgotten) however the levels of TPOab seen in graves are not usually as high as the levels you tend to find in people with hashimoto's.
When high T4/T3 are caused by TRab (Graves) you might expect to see VERY high levels of T4/T3 .. ie. potentially 3 or 4 times the top of the range .
but when high T4/T3 levels are caused by the initial 'hyper' phase of hashimoto's .. then you would not usually expect to get such high T4/T3 levels as you get with graves. and you wouldn't expect them to last as long .
Basically , if you had high enough T4/T3 levels / for long enough, to get prescribed Carbimazole , then PTU , and T4/T3 levels never came back down on their own ....then it is most likely that you had Grave's ( or a hot nodule) , not hashimoto's.
If i remember correctly , RAI (and thyroidectomy) are expected to (eventually) reduce levels or TRab over time ( although they can initially cause a raise in TRab levels).
If you had Graves in 1987 and then had RAI , i wouldn't expect TRab to still be high now.
so I wouldn't assume you were misdiagnosed with graves just because TRab are normal now
People with graves go into 'remission' ( TRab levels go down) usually after a period on antithyroid drugs. Some of them will then remain euthyroid without taking any carbimazole / PTU / or having thyroidectomy . Some will go into remission for a while , but then relapse again later if TRab levels go high again.
'Stimulating' TRab act just like TSH does , they stimulate the thyroid to produce T4/T3 but when/ if the levels of Stimulating TRab return to normal again . then the thyroid is not overstimulated .. T4/T3 production returns to euthyroid levels.
Some things may give a clue to the most likely answer to your question . ( but there is no way to know for sure now , to confirm graves you would have needed to test TRab when you were hyper)
eg :
How high were initial T4/T3 levels ?
Did you try coming off PTU before having RAI ? if so , what happened to T4/T3 levels ?
...........if you tried coming off , and they were still high after 2 yrs , then it's highly unlikely to have been hashimoto's causing them ... which only leaves Graves or a 'hot' nodule as potential causes for the high T4/T3 levels.
And if it was graves. and you were not in remission after 2 yrs , then the options were: stay on antithyroid drugs for longer in hope of remission if you wait long enough .., or have thyroidectomy/RAI .
If you had been given the option of staying on antithyroid drugs for longer.... then possibly you may have eventually gone into remission and not needed RAI/ thyroidectomy . But i don't know how common it is is to achieve permanent remission from Graves .
sorry that's a bit waffly ...my brain is tired ... I'll find you some useful links about TRab in the morning . x
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