I posted on update on thyroid depression but did not know if it is seen there.
I have been getting side effects from taking carbimazole tablets so my GP wrote to the endo dept ,they have wrote back saying because I am getting side effects from the carbimazole the next step will be to consider permament treatment with radioiodine, they are making me an appointment to discuss having this. My latest results are T3 5.3 (3.1-6.8), T4 13.4 (11-22) and TSH< 0.02 (0.30-4.50). These are from taking nearly 5 mg carbimazole tablets. I am wondering with these results if I need to have this done, any thoughts welcome.
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ja4ne
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Do you know cause of hyper? You have a long history of hypothyroidism. Your TRab was negative?
FT4: 13.4 pmol/l (Range 11 - 22) 21.82%
FT3: 5.3 pmol/l (Range 3.1 - 6.8) 59.46%
Your FT3 is disproportionately high compared to FT4. Sometimes symptoms occur due to this - because the FT4 is too low.
I would guess your low thyroid levels especially low FT4 is reason for depression. Rather than carbimazole directly resulting in a side effect. There is also PTU as an alternative antithyroid.
Allowing levels to rise will push FT3 above range. When balancing levels is troublesome drs should consider block & replace. Higher carbimazole to block function but Levo replacement to restore levels.
This leaflet often given out by hospitals, explains the difference between tritiation & block & replace.
Thank you for your reply PurpleNails, I think going hyper was the result of covid and vaccines, the levels in Oct 2023 were TSH 0.30-4.50), T3 11.5 (3.1-6.8), T4 26.4 (11-22) and TRAB <1.0IU/L (1.0-1.8). In Jan 2024 they were T3 10.1 (3.1-6.8), T4 24.7 (11-22), I started taking carbimazole 24th May so levels had dropped slightly before starting the tablets. Folate is 20.0 ug/L, ferritin 91 ug /L (23-400), B12 969 ng/L (197-771), Vit D 91 (25-150nmol/L)
Thank you for reply tattybogle, my thoughts are same as yours, I started taking carbimazole on the 24th May so just over 8 weeks before bloods were taken
I've never been hyper, to my knowledge, at least never diagnosed, although did have lots of energy about 5 years ago, before the ole thyroid kicked the bucket. I just put it down to a healthy lifestyle though lol. I have read a lot of experiences like yours though.
Endos are very keen to push for permanent solutions to hyper symptoms. And sadly its not for your benefit but theirs. Hyper is overseen in secondary care, ie via a consultant as hyper can be very serious.
So monitoring, blood tests, changes in meds and appointments have to be overseen by an Endo, even if your GP is involved too. That can be time consuming and costly. As we know the NHS is massively struggling and waiting lists are very long. Basically to put it very bluntly you are inadvertently clogging up their lists and they want you gone.
If you have an RAI you will be discharged from your Endo and the resultant ( most likely) hypothyroid will be managed by your GP. However if you read the forum regularly you will see how unhappy many hypos are with the " care" they receive and the lack of knowledge from GP's. So the Endos push for RAI as they can then pass your care off asap.
However we have lots of members who bitterly regret being pushed into RAI and who wish they'd explored alternatives. I would suggest taking your time, doing as much research into RAI as possible , as well as alternatives and not be forced into making a decision until you feel ready. You've only been on Carb for a few months. Personally I think talk of RAI is premature.
Thank you for your reply Sparklingsunshine, I don't feel comfortable having RAI as it sounds a bit drastic, I feel they are pushing things too fast to get a quick solution instead of monitoring things for longer. I will take my time and study RAI .
rather than chucking RAI at you , they could do something useful and try to find the cause of your fT3 being disproportionately high ...... didn't you have some nodules spotted in an enlarged thyroid some years ago ? .... might be worth asking endo to investigate them again now .
If one of them is 'hot' and producing more T3 , that might explain why your fT3 was / is higher than T4 ( most thyroid nodules don't do anything, but some do produce hormone by themselves )
TRab antibodies being negative suggests it's not graves , but a hot nodule could explain you higher T3 .
if it was me i think i'd want to discuss lowering the carbimazole to half what you currently take , to see if you feel better on that , but i have no direct experience of hyper / carbimazole , so i'll shut up and let others who do say more .
as i understand it , 'autonomy' is usually used in terms of an 'autonomously functioning thyroid nodule' ... meaning that this nodule is producing T4/T3 without stimulation from TSH .. so it carries on producing T4/T3 even of TSH is low and the rest of the thyroid gland has slowed down it's production of T4/T3
Thyroid uptake scan shows which bits of thyroid are taking in more iodine ( and therefore which bits are using it to produce more T4/T3)
eg . graves would show uptake increased across the whole gland.
hot nodule would show uptake increased in small patch where the nodule is .
Some years ago you were hypothyroid and taking Natural Desiccated Thyroid - were your antibodies run when first diagnosed and put on Levothyroxine - and the reason for your hypothyroidisn - Auto Immune ?
What thyroid hormone replacement option were you taking when your results started looking a little a little high and the thinking was Covid & vaccines ?
Your TRab antibodies were then negative and your T3 and T4 do not look ' high enough ' to be Graves Disease, but your treatment is that for Graves Disease :
What Carbimazole side effects are you dealing with - if it's the depression you wrote of a oth ago - this is because the AT drug needs titrating down - and allowing more of your own thyroid hormones into your blood stream.
Your T3 and T4 are now in range and you could consider reducing the AT drug again by 50% - alternatively ask to be switched to a different AT drug if it's seen as still being necessary - Propylthiouracil - PTU for short.
The AT drug is semi blocking your own natural daily thyroid hormone production and there is now sufficient T4 circulating in your bloodstream which is presently as your T3 and T4 inverted.
I do not understand why invasive RAI thyroid ablation is now being considered as an option :
I seriously do not understand why RAI thyroid ablation is still considered a ' therapy ' in a health care setting ?
This is a toxic substance will slowly burn out your thyroid in situ, is known to be taken up by other glands and organs in the body - not offered to women of child bearing age - there is an increased risk of cancer to the small bowel and breasts and the longer term consequences of RAI still evolving.
We do now have some research you may like to think about and discuss with those who care about your health and well being :-
I was taking 1/4 of ndt when results showed high pennyannie, the GP tried me on levo but I could not tolertate it. The side effects are very nauseaus and awful headache. I don't feel having RAI is the right treatment for me, I would rather drop the dose of carbimazole and see what happens, thank you for all the information.
My family doctor prescribed the levo, I cannot remember what dose I took but I could not tolerate it, TPO antibodies are ok, I decided myself to take NDT as my sister took it and it helped her and bought it privately. I took 1/4 of a 60mg tablet.
I did a private test for TPO antibodies, the endo has not done any tests for them since TRab test. The NDT was helpful, I found that small dose enough. My sisters TPO antibodies are ok I think.
Ok -so if you go forward with this drastic treatment you will become primary hypothyroid -
which I read after RAI thyroid ablation is more difficult to treat -
and the first treatment option on the NHS is T4 - Levothyroxine - - and if you can't tolerate T4 - you will need to be referred to an endocrinologist to be assessed for any other treatment option and you may be prescribed a small prescription for T3 to take alongside a lowered dose of T4 - or be prescribed T3 only :
NDT is not routinely prescribed on the NHS any longer - it is not a ' licensed ' drug though has been used by the NHS for over 100 years to successfully treat hypothyroidism - and it is basically now not prescribed due to its cost - though the NHS will never admit that.
So, you will likely find yourself having to self medicate NDT - and if staying within the NHS system for primary hypothyroidism you are dosed and monitored on just a TSH reading which means diddly squat when you haven't a thyroid and when taking any form of thyroid hormone replacement.
Obviously if can afford to go Privately you will find a very different landscape from that currently within the NHS :
Good - if any doubt - don't - you can always change you're mind but wouldn't recommend you do so - the AT drug is now blocking too much and needs chopping in half -take 2.50 mcg daily so to allow more of your own thyroid hormones into your blood stream - and let's just see what happens to your T3 and T4 :
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