I've had an overactive thyroid since 2016 and have been on various doses of Carbimazole. Since August 2018 I've been on 2.5mg daily and in December had blood tests showing I was totally stable. Since March I have been treated for Bile Acid Malabsorbtion (completely ridding me of the diarrhoea symptoms I was still having, despite my Endo repeatedly telling me it was irrelevant!).
However, I had a follow up appointment yesterday and am actually now underactive, even though I am on a very low dose of Carbimazole. I have been advised to come off meds until a blood test in 3 weeks. Does anyone have any idea how I have become underactive on such a low dose? Only in the last few weeks have I felt tired (which now makes sense) but I've otherwise felt the best I ever have
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g0courtney
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The fact you had malabsorption issues and this now resolved likely to change how much you absorb in gut
Thyroid disease is as much a disease of poor gut function as it is thyroid
For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also extremely important to test vitamin D, folate, ferritin and B12
Presumably you have had TSI or TRab antibodies tested to confirm Graves' disease
Have you had TPO and TG antibodies tested for Hashimoto's (and Graves)
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Does anyone have any idea how I have become underactive on such a low dose?
Probably because you never had Grave's in the first place, and they've been giving you the wrong treatment all this time.
In previous posts, you were asked several times if you had TRAB or TSI tested, and you never gave a definitive answer either way. Have you found out yet? Or have you had them tested since? You have high Hashi's antibodies, and Hashi's goes through 'hyper' phases, but doctors are so uneducated they don't know the difference between Grave's and Hashi's, and this mistake arises all the time. People being misdiagnosed because doctors think they know it all and don't need to do the correct testing, and then mistreating people.
You are now very hypo. So, when you see your endo again, you need to have a very serious talk with him, and get this sorted out. And, if you don't get serious answers, then you should complain about him to his superiors. He is being negligent.
As far as I can remember, I haven't had a TRAB or TSI test done. I asked my endo before if I could be swinging between over and underactive but he never wanted to discuss it
Didn't want to admit he was wrong, probably. This is a dreadful new trend - or maybe it's been going on for a long time, but we just didn't know about it - endos guessing at a diagnosis without doing the correct tests, and then giving the wrong treatment.
Thank you for your response and sorry for the late reply. I've felt very overlooked by my Endo throughout most of my treatment - all they want to talk about is treatment like radioactive iodine but considering I'm 22 I have no interest in doing something I cannot reverse.
-Diagnosed as overactive but before medication and during all my treatment I have steadily gained nearly 18kgs (despite gym and diet) since 2016
-vitamin deficiencies shown in private blood tests have been overlooked and now they have no interest to take into account the Bile Acid Malabsorbtion (although I think recovering my gut has helped my thyroid!! - but that's of no interest to them)
Yes, they are far more interested in whipping out your thyroid rather than try and get Grave's into remission. That's because they believe it's easier for them, not you! So, much hard work trying to get the right dose of carbi, the poor things are exhausted! But, then, if the patient gives in and has the RAI, they have no idea how to treat the resulting hypo! They think all they have to do is prescribe levo and get the TSH somewhere in range, and their job is done. Not so. If i were you, I'd get my TRAB tested privately. And, if it's negative, ram it down their stupid throats!
I've been told that you can sway between over and active thyroid - and this a a slightly rarer form of Graves Disease. Re gut issues - have you thought of taking supplements to encourage regeneration of healthy gut flora? - A course of probiotics (acidophilus combined with other friendly gut bacteria) . Optibac is a commonly available and well respected brand.
Fluxuating between over and under active sounds exactly like Hashimoto's Thyroiditis, rather than Grave's. This article discusses models to differentiate between diagnoses.
I don't know - I was diagnosed as under-active for a while early last year and then when I realised I'd lost weight at the end of the summer I immediately stopped taking thyroxine and they did more blood tests, and said that I was now over-active... that I had a rare form of Graves that fluctuates They didn't mention Hashimoto's thyroiditis which seems to be more related to under-active thyroid (I think it can start with over-active and then move to being under) . I've also got Thyroid Eye Disease which seem to be something that Graves Disease suffers get.
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