Does anyone feel this bad on carbimazole???

[shazzaroo]

last year i was diagnosed with overactive thyroid and the specialist at the hosp put me on 40mg of carbimazole within a few weeks i started to gain weight my hair was thinning and i felt very lethargic i am so bloated my son said i look 9 mths pregnant i feel awful and i dont feel like going ...

[RedApple Administrator]

Hi Shazzaroo, Oh dear, it rather sounds as if your dose of carbimazole is too high and you're now suffering badly with symptoms of hypO instead of hypER. This is not uncommon, it takes experimentation to get to the appropriate dose for you.

I suggest you should go and see your GP asap and discuss this with him, with a view to getting your levels checked and your carbimazole reduced accordingly.

[efilwol in reply to RedApple]

Trouble is, they don't "experiment" with hyper folk - they just whack you on the maximum dose and hope to make you come down with a thud in between scaring the crap out of you with stories of thyroid storm and the other ways that being hyper can kill ya stone cold dead.

In my limited experience, they only start fiddling after they have make you feel like crap because you have gone from 60 to zero in record time.

If you read her blog question which has more info, it seems like she is on "block & replace" which always seemed to me like an excellent way to f*ck your thyroid up good & proper. But I am not a doctor.

[Silver_Fairy in reply to RedApple]

I think normally they increase the Levothyroxine as opposed to lowering the Carbimazole.

That's what they did with me until I was (in their opinion) at the optimal range . I was on 40mg of Carbimazole and finally, 125mcg of Levothyroxine.

[efilwol]

Yes, carbimazole also makes me feel like rubbish. My endo suggested I start in a high dose (40mg od) and then work my way down. That seemed daft to me, so I told her I would start on a low dose and work my way up.

Well, I spent 3 weeks on 10mg a day and I had TREMENDOUS joint pain, especially across my shoulders and upper back. I also felt completely rung out.

Then I developed a sort throat and I had to stop the carbimazole while I got a blood test to make sure I was not experiencing bone marrow depression/agranulocytosis.

While I was off the meds, my little thyroid butterfly went ballistic and I ended up in A&E with atrial fibrillation. They put me on 40mgs od and I manged it for a week before feeling so utterly crap the I decided to lower it to 30mg od and see if I get on any better, although I have little hope as 10mg made me feel shite.

When I strated the CBZ, my free T4 was 39.2. After a couple weeks on 10mg, it had gone down to 35 - that's more than 1 mIU/L a week and that's fast enough for me. When I stopped it to wait for testing, it had shot up from 35 to 52 in the space of a week.

Anyway, my plan now is 30mg per day this week, 20mg per day next and then 10mg per day until I get back until 22 (my upper reference range.)

But don't be as stupid like me - talk to your endocrinologist. I am going to chat with then about my plan at my next appt on 27 Feb.

They have offered to switch me to PTU (propylthiouracil) to see if I have fewer side effects, but PTU is even harder in your liver than CBZ, so I think I will pass!

Anyway, you are not alone - carbimazole also makes me feel horrible.

[muddywaters]

Yes. I didn't react at all well on Carblimizole, I ended up switching to PTU which was better but only for a while, maybe you should ask to switch to PTU to see if tat helps. When were you last tested, do you know your results? You could have gone hypo, but being brought down from being hyper is really hard as it and it could be your body getting used to running slower, difficult to tell without knowing your blood results. x

[editfmrt]

So sorry you are having such a rough time. You have my utmost sympathy.

Yes - I found the experience horrific. I think it's easier and less chance of litigation to bung you straight on a high dose and ignore the nasty side effects rather than risk a life threatening thyroid storm which can happen quickly. Instead, if they get it really wrong and overdose you, a hypo coma is a slow death and they have more time to correct it - can give you less appointments that way too as there is less urgency to monitor you. Yeh - I'm a cynic - or realist.

I was not offered block and replace and it was pre internet days so I was ignorant - if I had my time again I would certainly go for that as it seems logical and more humane - it might take more effort on their part though.

Wishing you all the best and a speedy recovery.

[shazzaroo]

Thank-you to everyone for their advice and comments they gave me the confidence to speak up for my self when i went to the hospital yesterday. The specialist whom i saw said he has seen lots of women like me and he thinks i,m menopausal (i,m 47) he also said he has never come across anyone who has reacted this bad to carbimazole (which i know my reaction isn't uncommon after reading articles on this site, however he said i can switch you to propylthiouracil 120mg aday. he also said he has a colleague who has the same as me and manages to work day and night shifts and he thinks my symptoms are to do with my personality. I said to him i didn't have menopausal symptoms before taking carbimazole , however he insisted on a blood test for this. he also upped my levothyroxine from 50mc to 75mc so i will see how i go, he also said he will speak to the surgeon and they are going to remove my thyroid gland. He also said removal could make my graves disease much worse so i,m a bit worried about this. I suppose i need to weigh it all up when i speak to the surgeon and decide what to do (having my throat cut is a bit scary) but at least they are willing to do something about it. I also hope it is defiantly how it seems to me that it is the carbimazole and not the menopause! once again i thank everyone who replied to my question it made me feel so much better because i did feel like i was going crazy and i felt so alone, i felt a 100 times better after reading the comments which were left i showed my 21 and 22 year old and said see lots of people feel like i do or have some of the symptoms which i have on carbimazole im not going mad lol xxxx

[Hidden]

Endo started me on 20mg and been left there for coming up to 2 years. GP occasionally does a blood test, and I mean occasionally. My Endo has left now, thankfully as I didn't have much faith in him. He started me on Propanalol for palps and then 18 months on asked me why I was on them????? :S Seeing another Endo Friday so let''s see if her tactics differ and take me seriously or if they just try and fob me off! I am having symptoms which the Gp says is 'Perimenopausal' and I'm 42. I have been stressed to the hill, have low ferratin, chest pain, heavy periods that are heavier and shorter.......amongst other things. I thought it may be thyroid related but hey, what do I know. Endo suggested antidepressants, GP was happy to prescribe and I refused. I don''t want to be treated as a 'depressed' person, when I am convinced depression is not the problem. I have taken up the suggestion of councelling and go weekly - but even she doesn't seem to be listening. I began opening up to her last week on my 3rd session (won't open up to a stranger straight away) and she shut me down and wanted me to talk about 'feelings'. I think I all but give up with them all. Sometimes I think I know myself better and they just diagnose on a few symptoms without giving it great thought. You are not going mad but would love to hear about your 'symptoms' more in depth if you get time. Sonja xx