Sorry you haven't had any replies to your question. I thought about replying and then thought, no, there are others that know far more about Graves' than I do.
But, I've just had a quick look through your previous posts, and I notice that nowhere - unless I missed it - do you mention testing for Graves' antibodies: TRAB and TSI. Were they ever done? How was your Graves' diagnosed?
Thyroid Peroxidas Antibodies are usually see that high with Hashi's - Autoimmune Thyroiditis - but I'm sorry to say that many doctors, including endos, do not know the difference!
Hashi's starts off with a hyper phase, and is often mis-diagnosed as Graves'. But the hyper phase with Hashi's is transient, and carbi is the wrong treatment.
The hyper phases then continue to come and go, as the immune system slowly destroys your thyroid. Could this be what is happening to you? Do you have periods when you are hypo?
Anyway, that's the explanation of what they are. Why they tested them, I have no idea. It's not routine. Do you know why?
Just had it alongside full bloods and tft, they just said it’s graves with me having it for so long from pregnancy initially. I have always had spells of fatigue but I also have spells of anemia so🤷🏼♀️🤷🏼♀️ who knows! But thank you for your views on this, will see if anything comes of it.
Well, pregnancy is very often the start of Hashi's for many ladies. So, seems to me it was more likely to be Hashi's than Graves'. Fatigue and anemia are symptoms of hypothyroidism.
Are your FT4 & FT3 actually above range when carbimazole given / increased as opposed to TSH being low. Drs think low TSH equals hyper & do not investigate further.
Was carbimazole stopped & you resumed at 30mg after becoming hyper again or has dose been gradually increased? I believe you were on 5mg a few years ago.
TPO & TG antibodies are present with both Graves and Hashimoto’s you would expect the highest levels (such as yours) to show with hashis. Graves should be confirmed with either positive TRAb or TSI. Unfortunately there are countless examples of it not being confirmed & hypothyroid levels become apparent. You being hyper for so many years would make that scenario unlikely.
It’s rare but you can have both autoimmune conditions occurring at once. In which case treatment is based on reacting to levels. But unexpected rises / drops are more likely.
Without the an historical record it’s difficult to know if this is existing or new. I just hope that in the past doctors have been treating your FT4 & FT3 and not inappropriately dosing you based on TSH / incomplete information.
I’ve taken carbimazole 5 years & I keep a record of my results. Ive once had an additional FBC when unwell, which is the advice when taking carbimazole. It’s occasionally added but not done regularly. I think it should be really.
I was off tablets for a year then had a flare up again last September so was started back on carbi at 40mg and has recently been dropped to 30mg, apart from the tiredness that occurs around my monthly. The only time I’ve had a problem is the actual flare up whilst off carbi, everything from that has calmed down, was just wondering why this additional test now…. Part of me thinks they’re looking for reasons to try and push other treatments on me again. Appreciate your information, thanks.
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