Hello. I was reading older posts here about hyperthyroid and it was mentioned that carbimazole is only prescribed for Graves - is this correct? I have been prescribed carbimazole in the past and am about to have it again (with propanalol) and though I clearly have hyperthyroid symptoms (far too many to list) no doctor has ever spoken of Graves.
I didn't ask for most recent blood results - not thinking too clearly - but will obtain these if it helps. Thanks for any advice.
I too would be interested in knowing about Carbimozol. Also propyruracil and propanothol. I think they are used in the "block and replace" approach. I had it when post partum thyroiditis /early stage Hashi. Good luck I know it's shit.
You can read about anti-thyroid drugs here: btf-thyroid.org/antithyroid...
Carbimazole and propyruracill (PTU) are anti-thyroid drugs. Propanothol is a beta blocker, which may have some anti-thyroid properties, but which is used primarily to help ease symptoms while the anti-thyroids take effect (this can take up to eight weeks).
'Block and replace' treatment is one option for treating Graves' disease. A high dose of antithyroid is prescribed to 'block' natural thyroid action completely, while the hormones the body would have been making are 'replaced' with levothyroxine. The other option is 'titration', in which antithyroids alone are prescribed, and gradually reduced over time as thyroid levels come under control.
As I understand it from what people have said here (I have Graves', not Hashi's), the hyper phase of Hashi's is caused by the body dumping existing stores of thyroid hormone into the bloodstream. As antithyroids work by inhibiting production of new hormone rather than destroying anything that already exists, antithyroids would be unlikely to have much effect. However, beta-blockers could still help with any symptoms.
Hyperactivity in Graves' can potentially go on for months, even after treatment has begun..
Production of new thyroid hormone is triggered by TSH. a signal from the pituitary to the thyroid telling it to make more hormone. When the body has enough (or excess) TSH levels drop and production stops. With Graves' , the role of TSH is effectively hijacked by the antibodies, which tell the thyroid to start production, but not to stop. Untreated Graves' (and even Graves' in the early period of treatment) can go on for months.
As I understand Hashi's, no additional hormone is being produced so the hyper phase is presumably limited to the extent of the stored hormone levels. TSH will initially drop (as it does with Graves') to reflect the excess hormone in the bloodstream, but once the stores are exhausted, TSH will kick in again.
It should only be prescribed for Grave's, yes. And, Grave's is diagnosed by testing antibodies: TRAB or TSI.
However, as doctors don't really understand much about it all, they often seem to prescribe it for the 'hyper' phase of Hashi's, which isn't really hyperthyroidism at all.
If I were you, I'd ask for all antibodies to be tested, it rather sounds like you have Hashi's.
You need TPO antibodies and Tg antibodies to test for Hashi's - aka in the NHS, Autoimmune Thyroiditis. 
Thanks greygoose. Pretty sure some time ago I had private bloods done for the TPO and Tg antibodies and posted results here, I shall check back. I do remember being told it sounded like Hashi's after I posted. Never had TRAB or TSI checked as far as I recall.
Not too good at present so a bit confused. I really need to get this sorted as it has been almost a lifetime problem.
Yes, five months ago, you posted this:
TPOabs 98.3 ..............-34
So, that is Hashi's. And, with Hashi's, you swing from hyper-like results to hypo. But, in the hyper phase, your FT4/3 results won't be nearly as high as they would with Grave's. And, it's not because your thyroid is over-producing (so anti-thyroid drugs won't help) but because the dying cells of your thyroid are dumping their stock of hormone into the blood. So, it's not at all the same thing, but doctors very rarely undertand the difference.
No, it can be prescribed for other hyperthyroid conditions too, eg 'hot' nodules.. It works by reducing thyroid production, it can't reduce the body's existing stores of thyroid hormone.
However, whatever the conditiion, your doctor should understand whether/why carbimazole is the most appropriate treatment, and explain this to you.
It would definitely help to see your blood results - recent, previous and original if possible, including the ranges used for the tests. Results to request specifically are TSH, FT4, and FT3 and TRAb (although these may not have been done - but that in itself youd be good to know). If the recent tests included anything else, it would be useful to show that too.
How long is it since you were last prescribed carbimazole, and how long do you think you've been hyperactive this time ?
There is some useful info here: thyroiduk.org/hyperthyroid-...
btf-thyroid.org/thyroid-nod...
btf-thyroid.org/hyperthyroi...
btf-thyroid.org/antithyroid...
Thanks Valarian. I must get those test results asap. Last time I did private tests I couldn't get the blood to flow and it's put me off trying again. I know it is rare for NHS to test TRAB though.
I did see an endo a few years ago who said of course I had antibodies, I've got a substernal goitre ! Not interested. I mentioned weight loss and tremors and he said I could try carbimazole, but I didn't. Previously prescribed 15 or so years ago.
There are different types of antibodies - you need TSI or TRAb. If you are hyper and there is no other obvious reason (eg if you have nodules that are causing problems, they may send you for a scan first), they should test your antibodies to confirm Graves'. Your GP may not be able to do this, you may need to be referred to a specialist.
Hello Jib
How are you feeling - do you feel hyperactive ?
I would think, having had a quick look back at your history it's because of your on going issues with your thyroid, and with your throat being so restricted causing symptoms that are putting undue pressure on the thyroid gland causing irregular thyroid hormone production.
Hello pennyannie. Thanks for replying. Hyperactive is a bit of a misnomer isn't it, well I certainly feel anything but active ! Not good at all at present nor for the past year or so as it has all got worse.
Still losing weight, bad muscle aches and muscles tender to touch now for goodness' sake. Trembly, palpitations, breathless, all the usual things I suppose though I now have swallowing difficulties as well (possibly muscle related I wonder?).
None of this have I mentioned to doctor because I have given up really and decided this is the way I am now so just put up with it. Only called in to GP because blood test review showed problems apparently so now carbimazole and propanalol prescribed.
Don't think I have the energy to pursue it all at present.
Really do appreciate your replying though, thanks. j x
Well, yes, I can understand where you are coming from.
But if your thyroid gland is under any sort of pressure your thyroid hormone production will be restricted, and it's a bit like a car with a dodgy gear box, you don't know from one day to the next what gear you'll find, and this puts undue pressure on your whole body.
The thyroid is a major gland responsible for full body synchronisation including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism. When your thyroid is under attack all sorts of symptoms rear their ugly heads, some obviously related but others just seem plain odd, you're lucky it hasn't affected your eyes.
You are describing symptoms of both hyper and hypo and the job of the anti thyroid drug is to block your own production of thyroid production with a view not to cause you further discomfort while your hormones are raised and possibly life threatening.
Conversely once you stop the AT drug I presume, you presume, " normal function is resumed " but is it ? I don't know but it sounds like a bit of a seesaw with no stability, or middle ground.
Do you know how high your T3 is, as it is T3 that causes the symptoms we all live and tolerate when not adequately medicated, either with hyper or hypo- thyroid symptoms.
I guess there's the option of a thyroidectomy but understand you might not be too keen on this option.
I'm with Graves and following RAI thyroid ablation became very unwell some 8 years on. I found no help or advice from any NHS department and I have taken to self medicating and buying my own full spectrum thyroid hormone replacement which contains all the same known hormones as our thyroids produce, namely T1.T2.T3.T4 and calcitonin. and am much improved, and I have my life back.
Currently the NHS routinely only prescribe T4 - Levothyroxine even when you haven't a fully functioning working thyroid, or carry a scar from a thyroidectomy, which seems totally ridiculous to me, but this seems to be as good as it gets for thyroid treatment in the UK NHS in 2020.
I have been on Carbimazole since March 2019. I have a nodule in each of my lobes. Was awaiting appointment in May to discuss RAI as next treatment.
Now on 5 mg 3 times a week
Hi the Carbimazole definitely helped with symptoms of hyperthyroid and so far have been ok on it. Have put on weight but I think I am now heading to hypo end of scale. Need another blood test really.
I know I cannot stay on it too much longer as poss heart and bone problems could occur.
I really don’t want RAI completely hate the thought of it and I worry if radioiodine goes to places other than thyroid. However I see no other way forward. I suppose I could come off Carbimazole and see how hyper I get again. Will take advice whenever I get to talk to a Consultant again.
Have a look at Elaine Moore's site she has a lot of useful information on there. Just to add 10 years ago my Endocrinologist suggested I have my multi-nodular goiter removed or have RAI. Here I am 10 years later still with my goiter which hasn't got any bigger and I am so glad I decided to keep it because at the moment I feel well.
Here is the link
Thank you very much for link
Hey there Hugoo
I think you'll find that current thinking is that there is no actual evidence that low dose AT medication is harmful.
You maybe required to visit an endocrinologist for a yearly review but would think this preferable to loosing a major gland, and yes RAI does, to a lesser extent, go to other glands and organs within the body.
Elaine Moore has done much research on RAI - just dip into her website - you have the link :
I know what you have been told, as I was also told similar but I believe it to be NHS dogma.
Thank you pennyannie.
I simply do not know what to do. I cannot understand why I got these nodules in the first place. The Endo consultant said I would be passed onto a nurse at next appointment as he could not help me anymore as he had given me a diagnosis and a solution.
I don’t see how I can stay on Carbimazole forever.
Well, it's my understanding that nodules can take many years to develop, if they ever do, and some people lead a full life with nodules and their thyroid.
Living without your thyroid isn't much fun especially if you can't access full spectrum thyroid hormone replacement.
Either way, you are on medication for life - I guess it comes down how inconvenienced and unwell you become living with your current health issue.
Many people do stay on Carbimazole - maybe ask that question of the community and see what answers come back for you ?
Thank you really appreciate you taking time to help.
I know of people who have been on Carbimazole for years and they are ok. They have regular blood tests and if they have a goitre regular ultra-sounds. I had an ultra-sound last year and none of my nodules had got any bigger after 12 years. So I am lucky but they do cause symptoms and I did have a thyroid storm last year after attending a friend's wedding. I might have caused it myself my having a few too many glasses of champagne and several coffees. I now limit my alcohol intake but I do have a couple of glasses of wine at weekends. As for coffee I limit myself to one day because it can make me feel jittery. As long as my goiter doesn't get any bigger or any of the nodules look suspicious I intend to keep it. I have seen how women both in the US and UK have struggled to get the correct treatment after having either RAI or their thyroid removed. Elaine Moore had RAI and that is why she has a site giving others help and advice. She helped diagnose me about 10 years after my GP surgery kept fobbing me off all the time. Just to add I am taking nothing at the moment and my TSH is 0.38 which is a bit low but it is right for me. We are all different and that is why just going by the TSH is not a good indicator of my thyroid function.
Thank you. Should we avoid excess alcohol and coffee with hyperactive nodules?
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