Fifteen months ago I had RAI treatment to destroy my thyroid as the Consultant said it could no longer be treated with carbimazole as it was affecting my white blood cell count. So eventually, despite not wanting to, I had the treatment. As I had had an underactive thyroid for 12 years before it changed to overactive the consultant said my thyroid would become underactive again and I would go back on to levothyroxine. Sure enough within 8 months I was back on levothyroxine. Two months ago however, at a routine blood test my thyroid levels were suddenly very high again and I was put back on to carbimazole which gave me aching joints and a I gained a significant amount of weight.
My last blood test results were:-
TSH >0.01mu/L (0.35-4.94)
T4 8.2 (9.0-19.1)
T3 5.1 (2.4-6.0)
I’ve been told I need to continue with the carbimazole (20mmg) a day but I’m feeling awful and am really struggling to do just the normal every day things such as walking the dog as I feel as if I’m physically incapable of walking another step and am having to really draw on my reserves just to get around the block. This can’t be right, can it? I’m so confused, I just don’t understand what’s going on. Can anyone explain things to me please? Thank you.
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Fizz70
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If carbimazole is causing you problems, it is fairly standard to consider propylthiouracil (PTU).
He is failing to understand that TSH often (possible always) remains low for a long time after periods of hyperthyroidism. Sometimes NEVER returning to "normal". Is this a GP? Or a real endocrine consultant?
Thanks for replying. This is just my GP. He has referred me back to the Consultant (about 2 months ago) and I’ve had a letter from the hospital to say that they’ll be in touch with me in October, hopefully offering an appointment…..
Meanwhile get Vitamin D, folate, ferritin and B12 levels tested via GP
Or privately
Have you had both TPO and TG antibodies tested for Hashimoto’s as well as TSI and Trab antibodies for Graves’ disease
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
Just double checking you had the correct antibody tests to confirm your original Graves diagnosis. I was initially diagnosed as Graves (with TED) but after following advice here to ask for specific tests to confirm, I found I had Hashimotos (with TED).
Hi no, I haven’t had any antibody testing at all. I paid to see a Consultant and the only thing he was interested in was the RAI. I saw him 5 times and the longest I was ever with him was for just over 7 minutes. I wasn’t impressed but felt that my only option was the RAI as he didn’t suggest anything else.
We see steady stream of early stage Hashimoto’s patients misdiagnosed as having Graves’ disease
Early stage Hashimoto’s frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid
Alternatively it’s possible to have both Graves’ disease and Hashimoto’s at same time ……block and replace is standard treatment in these cases …..always via endocrinologist
I have read that RAI induced primary hypothyroidism in Graves patients can cause a further additional reaction and your immune system can ' take off ' again, and just another reason not to suggest RAI treatment to people with Graves Disease. elaine-moore.com
I'm truly sorry you have gone through this - looking back I see I wrote to you a couple of years ago and it's simply horrible that this quick fix is still a first line treatment, convenient for doctors, but not so successful for some patients immediately, or in some others, months and years later.
If with Graves Disease your TSH may never recover- this is totally wrong and your doctor should be looking at restoring your T3 and T4 levels to around mid range.
If this is proving difficult - the simple answer is to offer Block and Replace treatment - whereby your dose of the AT drug is increased to totally Block your own thyroid hormone production and a measured dose of T4 is also prescribed so you do not suffer the equally disabling symptoms of hypothyroidism - which is where you were some years ago.
Have the antibodies been run again ?
Are you still with the debilitating back ache or has that resolved itself ?
Thank you for taking such a lot of trouble in replying to me. I really appreciate it. I’ve never been officially diagnosed with Graves Disease but am obviously struggling with all the ups and downs caused by my dodgy thyroid which I thought the RAI would have dealt with. I’ll chat to my GP about Block and Replace as he does listen but I don’t really think he knows what he’s doing.
I still have the bad back for which the cause had never been identified….
Your FT4 is under range while your FT3 is high although within range.
An antithyroid isn’t going to repair this imbalance this by adjusting dose alone.
Block & replace ie higher blocking dose to block all function. Then a replacement levo to replace FT4, your body should convert sufficient levels of FT3 & prevent disproportionately high FT3.
Going by TSH is an approach that will make you hypo & symptomatic. Sometimes the TSH stops reflecting thyroid levels in a normal manner & this is well researched & known about. In technical terms it is call (Hypothalamus-pituitary-thyroid) HPT axis down regulation.
RAI is repeated in 10% of cases. Were you made aware of that? So your specialist may suggest a further treatment.
Were you hyper when treatment was given or was it that your TSH is low?
Doctors may not take time to explain fully but you do not have to agree if you aren’t comfortable with their suggestion. If you prefer to stay on antithyroid medication or decide surgery is a better option.
After a period of hyperthyroidism TSH can remain very low for many months and in some cases indefinitely. In addition if you have Graves’ antibodies they can suppress TSH. In these cases TSH is unreliable as a marker of thyroid hormone status and they should go by fT3, fT4 and symptoms. If your endocrinologist doesn’t know they are not much use.
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7 weeks after rai treatment son is overactive and hospital saying the treatment hasn’t worked … am I right in thinking it still could work?
RAI agreed but now unsure- advice needed
