I decided to give carbimazole a go as I was not keen in the past taking it. Started carbimazole 4 weeks ago, take 5mg in the morning and 5mg in the evening, at first all was good the first 2 weeks, into my 4th week and feel bloated, have heartburn, and what is interesting I lost my appetite, prior to carbimazole I was eating like a horse. I am not due for blood tests.
Does anyone here have any idea what is going on ! I do not want to give up on carbimazole yet! your views much appreciated.
l have just read your interesting history, but a can't find any fT4 or fT3 results anywhere, so that makes it a little hard to really offer any opinion . the main way to tell about the effectiveness of carbimazole , and therefore an opinion on what is going on would be to see the history of ft3 and fT4 levels , along with TRab levels to confirm Graves, and also TSH levels. I can find a TRab level of 13.1 in your posts, and a couple of TSH's 0.05, and 0.002 ? ish, but no fT3 /4 .... what level are these at before you started the carbimazole ?
What was it that decided you to try carbimazole after all , were you having more symptoms , or is it still just the hand tremor that's a bother ?
I have posted the last blood test results below. What made me take carbimazole, I felt tired, exhausted, it was a vicious circle, eating all the time, weight reduced from 50 -51 kilos down to 45 kilos, peer pressure to do something about it. I did my research and with the help of this forum I became far more informed. Apart from the bloating, gas in my tummy and not eating now, I had no other symptoms from carbimazole.
Bloods should be retested see what’s going on
Symptoms suggest hypothyroid
All thyroid tests should be done as early as possible in morning before eating or drinking anything other than water
Important to regularly retest vitamin D, folate, ferritin and B12 too
Have you had TPO and TG thyroid antibodies tested for Hashimoto’s
I will have blood tests sooner, it will be a complete blood count my Endo does not want just TSH, FT3 FT4 he wants to check everything.
Hey there again :
The AT drug is blocking your own thyroid hormone production so your " presumed " high levels of T3 and T4 will not rise any higher and will slowly reduce back down into range.
This sounds like the dose of AT drug maybe at too high a dose for you as it reads as though your metabolism has slowed down too much, causing stomach and digestive issues.
My symptoms were exhaustion, dry gritty eyes and insomnia were reduced when i was put on Carbimazole but I do remember experiencing a phase, when on the AT drug, of eating for 6 and loosing weight ; with hindsight I now realise my dose of the AT drug was probably not high enough at that point in time.
A faster than normal metabolism can cause low vitamins and minerals as can a slower than normal metabolism - so do try and keep on top of your core strength as without optimum ferritin, folate B12 and vitamin D your ability to ride out this phase of the treatment could be further compromised.
Thank you Pennyannie. There is definitely something going on with me, I have never ever had bloating, feel nauseated and full of gas, until I started carbimazole. I just know its the carbimazole, today I decided to take 2.5mg and the bloating was there but not as bad. I really think I may need to have bloods done earlier rather than later. As for sleep ! too much, I sleep like a baby but also feel a little tired. I know what the Endo will say to start me on PTU but that could also give me problems. As for food I went off it, where as before I was constantly eating. I need to get to the bottom of things.
Your metabolism is changing and that in turn causes different situations to arise and manage :
Once on the AT drugs, I see it as a bit like being on automatic pilot - with the endo having put you in a holding pattern, and it reads as though your digestion has slowed down :
The thyroid is the major gland and controls your metabolism and all bodily functions :
Your haven't the control stick - your on automatic pilot - and it's the endo who needs to modify and adjust the AT drugs thereby adjusting your metabolism.
I have decided as from today to stop carbimazole for a few days just to see whether carbimazole is the culprit, if I feel better without bloating and nausea then I will need to rethink my strategy. I will also inform the Endo and have bloods done.
When I was diagnosed with Graves my GP started me on 20mcg a day booked, me in to see an endocrinologist and booked me in to go back for a blood test after 4 weeks on carb. I’ve got asthma so I couldn’t take beta blockers for the pounding heart etc so I just had to put up with it all.
I had the blood test at four weeks then got a letter from the endocrinologist telling me to get more carb from my GP double up to 40mcg a day as my bloods hadn’t changed enough.
I did that and eventually after another two months taking carb my appointment with the end came round. I’d had a blood test the week before my hospital appointment and by that time I had gone from being very hyper to being pretty hypo!
I didn’t have any of your symptoms but to be honest I didn’t feel great until the endocrinologist I eventually saw started me on levothyroxine and every time I needed an increase in my levo my body let me know because I seemed to get hyper symptoms again.
I don’t remember actually losing my appetite but I did stop going through the house eating everything in sight - until then I was like a locust devouring anything I could find - even stuff I didn’t like.
If you haven’t had your vitamins and minerals checked like Pennyannie suggests it would be well worth doing that. You want all of that as good as possible to help your thyroid.
Your GP might do them (mine didn’t) but it’s possible that you will need to pay and get them done privately through somewhere like Medichecks. In the end I got fed up trying to persuade doctors and paid for my own.
Thank you. I will include the vitamins next time, although Ferritin and vitamin B12 is listed below. I had my doubts about carbimazole, for at least 3 years I used natural medicine and felt ok, its only when I began to feel extremely tired I went to see a private endocrinologist, he is very good not pushy at all. Something has happened and I do not know why.
Free T3 27.7Free T4 59.2
TSH <0.2
Anti-TPO Antibodies >600
Anti-Thyroglobulin Abs. 195
Ferritin 20
Vitamin B12 298
AntiTissueTransglutaminase IgA 0.9
Serologically negative for coeliac disease
please note the above range has not changed since 2019 more or less the same
Apart from hand tremor mostly I did not feel unwell.
I decided to try carbimazole as I was under duress to give carbimazole a try.
Been taking carbimazole 4th week now 10mb per day split into 2 dosage morning and evening.
Past history I had Graves disease since 2018 left it until 2019 to see the Endo, did not take carbimazole. In 2020 was seen again a different Endo I chose not to take carbimazole
In 2021 went Private Endocrinologist, started 10mg carbimazole.
I have this constant heartburn, digestive bloating since taking carbimazole.
From 45kilos I went up to 47 kilos within 4 weeks
Today I will give carbimazole a miss and see if the bloating goes away.
I would just like to comment that your Ferritin is very low are you taking anything for that? Also I took PTU because Carbimazole brought me out in a nasty rash.
I have iron tablets perhaps I should start taking them, thank you.The Endo said if carbimazole is not suitable to give me PTU, did you have any issues with PTU side effects
No PTU did suit me but my Endo overdosed me on it. This was over 10 years ago and since then I have been in remission twice. You can read my story on my profile page if you are interested.
Loss of appetite, bloating & heart burn could be hypo symptoms. It would be a faster reaction on a low dose than expected but I agree with others you need to compare blood tests. Should be due a test around 6 weeks after commencing carbimazole so due soon in any case.
Any change supplements recently which might explain the heartburn or bloating? Or change of brand, my pharmacy dispenses mixed carbimazole brands all the time. They hand write on the bottle - mixed brands. As I alternate daily dose 10 \ 5mg Ive sometimes been given several different types at once.
The first brand after 3 weeks gave me bloating, so I changed to a brand which is supposed to be much better than the first one, but again the bloating, when I spoke to my Endo that I had bloating he thought it was unusual but two brands of carbimazole are making be bloated, my bloods are coming up soon to be tested, will speak with the Endo once I have the results.
One day without carbimazole, I feel my self again, no more bloating, no more nausea and my appetite has returned, I had a good meal. There it is, carbimazole, this side effect must be listed, as many Endo's will deny it is a side effect. Our bodies are brilliant, they know what is damaging them, hence the side effects, what do we do we pursue with the medication. My mother died from liver disease it was painful to see her go through such pain. Carbimazole can induce liver problems.
I will have the blood testing this week, see exactly where I am with my thyroid, then I will make a decision.
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