long term carbimazole

Fern, thank you so much. Do you know - I don't know what levels he uses to treat me but I'm pretty sure I can go through some files tomorrow and look out some of the blood results over the last 12 months and post them as you suggest. He is a specialist in Diabetes so you may have a point.

I really feel really distrustful now too so I am going to investigate as much as I can now for myself. I will also check out the support group.

Thanks so much for your response.

Yes, the thing is: If you have either RAI or Surgery you will ALWAYS be hypothyroid and dependent on thyroid supplementation. It is extremely important to be sure your doctor can replace the thyroid hormones properly.

Hi All,

on March 29th I became unwell with tonsilitos and a chest infection. on 2nd April I was admitted to hospital as I had ahigh temperature, my heart was beating at 140bpm. I was severley dehydrated. I was given 5 litres of fluids and had antibiotics pumped into me via a line in my arm for 7 days!. The CARBIMAZOLE tablet had caused a 1 in 3000 reaction. It had killed all my white blood cells that was why I couldnt get better naturally.The 7 days in hospital were spent in isolation as it was important that I didnt catch another infection. my white blood cells dropped as low as 0.9. Iat that point I was told they mustnt drop any lower. If they did I would have to have bone marrow treatment! I was scared. Luckily the next day my white cell count went up slightly to 1.1 and then continued to go higher but it took a week!. so beware anyone taking carbrimazole!!. I am having the RAI tomorrow

I am so sorry you have had such a bad time of it. Some people apparently do very well after RAI. I hope you are one of them. I hope they supplement your thyroid adequately afterwards. Keep us posted.

Hi, Very interesting site. Glad I found it.

I have been on Carbimazole 30mg for two weeks now. Friday I developed some small spots that itched like crazy. Today I have spots and lumps all over me that itch like mad. Has anyone else had this? If you have, how did you releive it? I've tried antihistamine tablets and creams but they're not really helping.

I was diagnosed with GD two weeks ago. I have been told that I will have 18 months of treatment. If, after 18 months I am not cured, then my thyroid will be removed. 18 months seems so long at the moment. I feel so rubbish and have no energy whatsoever. I have also put on weight when everyone is telling me I should have lost weight, but I did give up smoking at the same time that I developed symptoms of GD, so perhaps that's why the weight gain, or did anyone else gain weight with Hperthyroidism/thyrotoxicosis instead of lose weight?

Itching, weight gain, low-energy, and more is usually due to being over-treated for GD, but when I had itchy palms and feet on Methimazole [MMI] (somewhat similar to Carbimazole) my doctor gave me a Benedryl gel, which helped.

First, realize that it is your body being treated and that the doctor cannot make you have RAI or surgery without your permission. Even taking the anti-thyroid drugs requires your compliance. I learned to recognize my symptoms, and skip pills if needed, keeping my medication constant for the last 4 weeks before the new lab work.

The next most important thing to know, is that you should be able to get copies of your own lab work, and carefully record how much medication you were on each day--even keeping a journal of symptoms helps. [I was too tired and too foggy headed to do it myself, but others have done it.]

I was treated for a year, then refused treatment for 3-4 months, then resumed treatment under a different endocrinologist for a little over 2 years, when I was able to discontinue the MMI with the doctor's approval after-the-fact.

Now, 7 months after stopping the MMI, feeling very hypOthyroid the whole time, I have been able to take thyroid supplements. It is really a miracle that I was even able to find a doctor who would prescribe what I needed (Cytomel) and allow me to monitor my own dosage within limits. I don't think I would even have been capable of doing that much if I had not read a lot about the thyroid in the meantime. After one week, taking 0.5 tablet of Cytomel 5 mcg every other day, I feel like I have my life back.

I would also suggest joining the GD group on dailystrength.org, where there are patients who have gone into remission and are glad to help newcomers.

Brigette: I replied to your comment, intending to be helpful, but I included a reference to another site which turned into a link, which apparently needs approval before it may be posted. If it doesn't get either approved or flatly rejected soon, I will try to post what I remember of what I said before, but without the link.

I look forward to reading it.... if it is passed.

I spoke to my doctor today on the phone and he is changing my medication. I'm coming off of Carbimozole but can't remember what I'm going on to. Have to pick up the prescription tomorrow. I'm still itching like mad, so can't wait to come off of it to be honest.

Still interested to hear if anyone else put on weight instead of losing it.

With my Methimazole (MMI), similar to Carbimazole (CBZ), I usually put on weight. My Endo #2 promised to start me out slowly so I wouldn't put on weight, but I still did.

Being hypothyroid will cause the itching and the weight gain. It really seems like you are being over-treated. Please post your lab results with the normal range given and the amount of CBZ you were on at the time.

I didn't explain myself very well..... I put on weight BEFORE I was put on medication. From September (when I first noticed symptoms but didn't know what was wrong) until 3 weeks ago when I was diagnosed I have put on 2 stone. Everyone seems amazed, including my Endo. I'm still described as being thyrotoxicosic so dreading if I go hypothyroid, as I'll probably put on even more weight. Before I was diagnosed I was exercising every night, cycling and walking in an effort to lose some weight, but the Endo told me to stop for now, as everything is working overtime, including my heart, so that's not helping either.

I just cant wait to feel (and look) normal again, but is it ever going to happen? Right now it doesn't feel like it.

I'm sorry, Bridgette, I thought I had responded to this last comment of yours.

What have the changes been since you last posted? What medication are you on now, and has it helped any?

It has been a long hard time for me, but I have felt "normal" since June 17th.

I had an email saying you had responded but couldn't see the reply. Obviously a little blip somewhere.

I was on Carbimozole (30mg) but I came out in a very itch rash so I've now been put on propylthiouracil (300mg- 6 foul-tasting tablets a day ). To be honest, other than my palpitations stopping, I don't feel any different/better. All of my other symptoms are still there. I can't stand the heat, I'm tired all the time, I am constantly hungry (obviously causing the weight gain), I snap at everyone, nothing is done quick enough, I can't sit still for 5 minutes and I don't sleep. I have a blood test Monday and seeing my Endo the following week, so hopefully he will up my dose or something. I can't stand the thought of another 17 months of this :-(

Yes. It sounds like the hyper thyroid symptoms I never had. I have never taken PTU, either. I hope you get some relief soon, though. Can they give you other medications to alleviate some of the symptoms? Do you try to eat mostly healthy food even though your appetite is out of control?

I think I have a fairly healthy diet (although I don't eat anough fruit - I don't really like it) but I'm a bit confused about what to eat. Some things I have read say eat foods high in Iodine, other things say don't eat foods high in Iodine. At the moment though I am just eating anything I can find in the cupboards, healthy or not lol. My appetite is huge at the moment and I am genuinely hungry an hour after eating a large meal. I'm now trying to eat smaller meals, but the frequency is the same. I'm finding the weight gain really hard to deal with, as I have always been very slim. I'm just not used to it. I feel heavy climbing the stairs, walking, etc. and none of my clothes fit me. It just all adds to the feeling of not being normal :-(I'm not sure about other medications. I have a whole list of questions for my Endo.