[haren001]

#1017822

How long is too long on Methimazole? I know there are a lot of side effects with the drug, so how long is too long to be on it before they start effect you? Thank you.

[Kimberly]

#1061115

The latest guidelines from the ATA and AACE are to use Anti-Thyroid Drugs for a period of 12-18 months, then do antibody testing and withdraw the meds if antibody levels are low. If the patient relapses, the guidelines say that low doses of Anti-Thyroid Drugs can be administered for a longer period, if the patient does not want surgery or RAI.

However, in Japan, more doctors are supportive of using ATDs for a longer period.

Personally, I’m a bit puzzled by the ATA/AACE guidelines. If keeping a patient on low-dose ATDs is OK for the longer term on the second go-round, why run the risk of having patients go hypER again? Also, the risk of side effects is actually highest during the first 90 days of taking the meds – and this clock “resets” if you stop and then re-start the meds.

This will be a good question for our upcoming conference!

[HonestBabe]

#1061116

I’d like to hear more about long term methimazole use for hyperthyroidism. My doctor doesn’t recommend it for my situation because it doesn’t cure … only treats the symptoms and he doesn’t like the side effects. He says curing this at the source is the long term answer. My mom is on methimazole for 4 years (she’s 91 years old). So does anybody have a clue about long term methimazole, like longer than 5 or 6 years? Is it recommended for long term use? Any reliable medical data on it?

[Kimberly]

#1061117

Hello – There are a couple of studies from overseas that have supported longer-term use of methimazole. The latest guidance from the ATA and AACE suggests RAI or surgery for patients who are unable to achieve remission, but notes that "Low-dose methimazole treatment for longer than 12–18 months may be considered in patients not in remission who prefer this approach."

You had mentioned that you don’t have Graves’, though. I am not personally familiar with methimazole being used long-term to treat nodules, although it is sometimes used to prep a patient for RAI or surgery.

[James]

#1061118

Honestbabe,

I had a close elderly family relative with a hot nodules (non cancerous), that was also Hyper T, and treated with the ATD Methimazole. She was prescribed 5mg/day for about 12 years with careful medical monitoring of course. I often questioned her as to “how she was doing” and she reported back that her thyroid levels were OK and presumably consistent from blood test to blood test. She of course had far more serious health concerns that she had to deal with during that period of time. Keep in mind that although it is possible to treat the Hyperthyroid condition the same way, we are talking about two totally different physical disorders (Autoimmune thyroid disease versus Nodules), just as Kimberly pointed out. Sorry I have no “medical data” on this, just sharing a family members experience in this case. Ultimately we have to work collaboratively with our Dr. no matter what choice we make.

Wishing you the best as you continue to seek valued information.

James

[RebeccaJT]

#1061119

I am in the UK and my doctor is the head endo at a large London teaching hospital, very well respected and he sees 70 GD patients a week. He is encouraging me to go for long term ADT use (here in the UK we call it Carbimazole, and it’s more common than PTU). He said that there is no reason why you can’t stay on a low dose for ten or twenty years if remission is not achieved. They do this all the time with other diseases, so I can’t see why they can’t with GD too.

Also I know that the American writer and expert patient, Elaine Moore, talks about this and how there is a tendency to rush patients through treatment for GD when really there is no real rush provided the patient is well.

Again, I can’t comment on medical guidelines but I know for me I’m sticking with drug therapy for now as I think the consequences of hypOthyroidism long term are not fully explained to patients and are also not without risk. I had one doctor say of thyroxine ‘you just take a pill and feel like a new woman’ which is clearly over simplifying a very complex illness and recovery. Many people do just take a pill and feel OK, but lots don’t and I think it’s important to think through our choices carefully. I just posted elsewhere that my doctor said that by the very nature of their illness, GD patients have a tendency to rashness and urgency that doctors can take advantage of (his words not mine) and his job was to slow me down so it was me and not my symptoms choosing my treatment!http://www.ngdf.org/phpBB3/ngdf/posting.php?mode=reply&f=3&sid=6683cd6a8ec00fbb6b2c13243ee8f33f&t=41702#

That is just my opinion and of course I really hope that you find the information you need to make a decision that is right for you.

Best wishes and good luck

Rebecca

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