long term carbimazole

I have been on Carbimazole for 7 years - starting at 60mg per day but have been on 10mg for the last couple of years. Have goitres so thyroid will not correct itself. RI is a no go because cannot go near my children for weeks. Has anyone else been on it that long & is it really bad for you?

I really don't know what to do. I was diaganosed as hypo about 18 months ago. was given 25mg levothyroxine to take. for 9 months i felt brilliant , back to my old self. had been suffering with anxiety, tearful , memory loss and foggy brain. then i noticed my eye bulging. realised after going to docs i was now hyper , I had graves disease. i was told to stop taking levothyroxine and see what happened. felt awful, levels didnt change. 3 months of blood tests and I was still hyper . endo then gave me 5mg carbimazole to take for 3 months before having RAI which is booked for end of April.

I have read so much information on peoples views of being for and against RAI. People for and against taking carbimazole for a long time and still don't know what to do.

My husband says I shouls listen to my endo and do what he says. I really don't know

lynne42, Whatever else you co, I would not do RAI, particularly if your eyes are involved. I understand that the newest recommendations are that RAI can make Graves' Ophalmopathy worse. Get a second opinion, at least.

Did they test your TPO and TSI levels, and your Free T4, Free T3 levels as well as your TSH? It is understandable that the TSH might not change with Graves' Disease, but didn't the Free T's change either? How high of a dose of carbimazole are you on?

If it were me I would cancel the RAI until you can get a second opinion. There are other options. I wouldn't do surgery either because it is so permanent, but at least it may be better than RAI.

Its very hard to no what is best. I have spoken to others that have GD it also appears Encro tell their patients different things.

I have been told that Carbimazole long term does effect the liver. If you go into remission after coming off the meds all well and good, however if you come out of remission and become hypo then there is no choice but to have the RAI treatment.

As for bulging eyes, I have that. I have been on prednisone now for 18monts with awful side effects, I have just tappered myself off, I have made an appt at GP next week so will tell him then. I just had to have a rest.

I have forgotten what normal is.

I have read so much about GD that I don't think the Encros no much about it that is why we are not managed properly.

Many thanks for your replies Fern & Lynette,

I didn't mention that my eye is now back to normal. It took about 10 months, but obviously still worried if RAI would set it off again. The doc said he would give me steroids if needs be before the RAI to stop it affecting my eye. When I saw him last 2 months ago my eye was still not right so thats what he suggested. my test results then were TSH 0.01 T3 T.8.1 1 T4 23.5. about a month ago so a month after seeing him last I was feeling really bad. Couldnt do my job (office work), memory reayy bad, very confused at work. couldnt operate my phone one day. was going home in tears..... this lasted about 10 days. I started taken 5mg carbimazole from that last time of seeing the doc. now after taking it for 2 months I have to say for the last month I have felt really good. hair still falling out, anxiety levels still fairly high, but mentally really good. I am wondering is this going to last. i have had this before. felt good for a while then have a bad spell and it goes on. so wondering if there is another bad spell around the corner or is the carbimazole working for me . I dont think I am hyper anymore , possibly normal levels or slightly hypo. just a guess.

my thinking is if I can keep well till 16th April when I see him again, I will definately question booking the RAI appointment which is what he wants me to do. But if I have another bad spell between now and then I cant see any other option but having the RAI. I cant live my life going up and down with this bad spells. Its awful when it is happening.

what do you think now after reading my message?

First, I think it is really amazing that your eye came back to normal on its own, without surgery.

It looks like your labs are old style and not really the tests that are meaningful that they can do now. Aside from antibody tests which includes the TSI (Thyroid Stimulating Immunoglobins), the only tests you need are the TSH, FREE T3, and FREE T4. Different labs have slightly different tests, though, so you need to post the ranges. My last ones were:

TSH 0.99 (ref. range: 0.27-4.20)

Free T4 (FT4) 0.99 (0.60-1.12)

FT3 2.56 (2.50-3.90)

If the numbers of the reference ranges are very high and it doesn't say "free", it is probably total serum numbers, but those tests are meaningless.

Even when doctors have the right tests done, they often ignore the FT4 and FT3, unless they are too high. The Doctors often diagnose and prescribe on the basis of TSH alone, which really doesn't mean much for GD patients.

Also, I had methimazole instead of carbimazole, which becomes methimazole after being metabolized. I don't know if taking the methimazole directly makes it more rapidly effective or not.

I would still be cautious about doing anything that permanently destroys the thyroid without looking into it very thoroughly. Being very Hyperthyroid is hard to take, but being Hypothyroid is even worse, imo, and a lot of doctors refuse to supplement the thyroid sufficiently after RAI or Surgery, and it is not worth the risk, I think.

If you are on anti thyroid drugs, there is a fairly good chance to go into remission in less than two or three years. (If you can feel good in the normal range, I think it is easier to go into remission.)

Doctors may want to destroy the thyroid because they think it is easier to treat hypothyroidism, and they don't want to bother with seeing you into remission.

If they were more willing to treat the hypothyroidism with sufficient levothyroxine and cytomel, or Armour Thyroid or some combination, then I would be more willing to get surgery--but not RAI. Being offered steroid treatment is not good either.

That is what I think.

I think the main thing is to manage symptoms. When they are managed and you can feel like you can enjoy life again, it will be easier to go into remission.

I suspect the Methimazole works better than Carbimazole.

I have been able to go off the anti thyroid drugs after about 2.25 years since treatment by the endocrinologist I went to for a second opinion, and who did a much better job than the first one.

Even then, I attribute my success to cautiously managing my own doses according to my symptoms. My motto: You can always take less than you are prescribed, but never more.

I had to obtain my Endo's approval after the fact, though, always being honest, but letting the results of the labs tell whether or not I stayed in the normal range on a more reduced dose than prescribed.

Lynette, I believe you are right. What ever anti thyroid drug you may take, there is a risk of having damage to the liver. My endocrinologists checked my total metabolic panel from time to time to be alerted in case it happened. I don't know how long is too long. I still think that taking less ATD gets you into remission sooner, and remission is better than RAI or surgery.

Hi all,

I've been on 40mg of carbimazole for the last 4 years. My endocrinologist tried to lower my dose after the 18 month period but my levels jumped up high again pretty quickly.

He then suggested removing my thyroid as he felt my kids were too young at the time for me to have the RAI (my youngest was only 4 at the time). I really didn't want it removed so we decided to keep me on the carbimazole for the time being. At my last revision last month he has now said that he doesn't want to keep me on the carbimazole any longer as it may damage my bone marrow(?) and has said that I need to opt for the RAI now at this stage.

I have really struggled with my weight terribly since just before being diagnosed with graves and 4 years later I'm still overweight which is so miserable. My Doctor said there we no side effects with the RAI so i was ok wi the thought of it but after reading this The thought of the possible weight gain after the RAI just fills me with even more dread. I would be really interested in hearing more about any possible herbal alternatives too or any other possibilities for me or is RAI my only option.

I'm really glad to have found this forum tonight when I decided to look up information on the long term use of carbimazole, I wish I had found it 4 years ago.

Thanks.

Sharon, does your endocrinologist diagnose and treat according to the TSH alone or does he consider your symptoms and your Free T4 and Free T3?

If you have your lab results or can get them post them, including the dates and ranges of each. Better yet, join Daily Strength support group and post them there under the Graves' Disease forum. There are many good people who are willing and able to help you there.

Too often endocrinologists are too busy to look into the particulars of the case for their thyroid patients because they are more involved with patients with diabetes. Even regular doctors are often instructed to diagnose and treat according to the TSH, but sometimes the Free T levels are also low, so you might not be as hyper as you think, if at all.

If I could trust the doctors to treat hypothyroidism properly, I wouldn't balk so much at surgery or RAI.