[Harpy April 27, 2012 at 2:07 am Post count: 184]

#1059000

I just stumbled across a discussion on another thyroid forum.
Paraphrased:
I have been on Methamazole for 14 years and although doctors have been pushing me to have RAI & Surgery, my current Endo said that I could stay on it for life as long as I did not have an Allergic response.
Response:
Yeah, there is a member here that has been on Methamazole for 32 years with no ill effects.

I know this is not a scientifically substantiated study, just wondering what others experiences are on this subject?

As far as I am aware the official recommendations are 18 months to 2 years in a lot of western countries, but I have seen somewhere some countries actually have up to a 5 year official recommendation.

[Bobbi April 27, 2012 at 4:41 am Post count: 1324]

#1171472

Early in the days of this board there were a lot of conversations about this topic, Harpy. Our doctors tend not to be comfortable with decades-long use of ATDs (especially larger-sized daily doses) unless there is an underlying medical reason why the patient cannot tolerate surgery or RAI. I know of no data base or other study which would indicate the prevalence, to answer your question.

[KimberlyOnline Facilitator April 27, 2012 at 9:20 am Post count: 4294]

#1171473

Hello – I have a personal interest in this subject, as I have been on ATDs for 4.5 years, and currently have no plans to pursue RAI or surgery, unless my medical situation changes.

The latest guidance from the American Association of Clinical Endocrinologists and American Thyroid Association advocates a 12-18 month course of Anti-Thyorid Drugs and states that “A meta-analysis [review of several studies] shows the remission rate in adults is not improved by a course of ATDs longer than 18 months.”

However, there is a small note in the guidance that states, “Low-dose methimazole treatment for longer than 12–18 months may be considered in patients not in remission who prefer this approach.”

Not all doctors agreed with this, and in fact, a few doctors wrote a rebuttal, stating, “Although the guidelines state that the prolonged use of ATDs is acceptable when patients ‘prefer this approach,’ we all strongly discourage this, especially in patients taking higher ATD doses (>15mg/d methimazole [MMI]). In this situation, we feel most comfortable documenting that another course has been suggested, but that the patient has refused definitive therapy. In this case we do not believe that the customer is always right.”

There haven’t been a lot of studies on long-term use of ATDs, but here are a couple of references. One looked at continuous use of ATDs, while the other looked at starting/stopping ATDs over a period of time in children.

(Note on links: if you click directly on the following links, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).

Azizi, et. al, 2005 “Effect of long-term continuous methimazole treatment of hyperthyroidism: comparison with radioiodine”

http://www.eje-online.org/content/152/5/695.long

Léger, et al., 2011 “French Childhood Graves’ Disease Study Group: Positive impact of long-term antithyroid drug treatment on the outcome of children with Graves’ disease: national long-term cohort study.”

http://www.thyroid.org/patient-thyroid-information/ct-for-patients/volume-5-issue-4-2012/vol-5-issue-4-p-3-4

Bottom line, this is a decision that each patient will need to make, after careful analysis of the risks and benefits of all three treatment options.

(updated 8/3/12 – Léger link didn’t appear to be working)

[nydiev April 27, 2012 at 8:13 pm Post count: 2]

#1171474

hello! I’m new to this forum~
I’ve been hyperthyroid for ten years now and just recently found out that it was Graves’…I’ve also been taking methimazole on and off for ten years with doses ranging from 5mg to 15mg a day to two times a week. My first endo never mentioned the bad effects of the medication (nor the fact that I had Graves’!) but my current endo said I may have to find a new endo if I don’t agree to get off the medication soon. He stresses the negative and sudden effects that could occur especially liver failure every time I see him. Because methimazole is made with chemicals and is synthetic, he advises the RAI treatment as my next option because thyroid replacement pills are safer and easier to manage.

Little by little I’m starting to see how serious of a disease GD is…

[adenure April 27, 2012 at 8:30 pm Post count: 491]

#1171475

That really scares me to be honest! I thought that a 5 mg. dose of methimazole, everyday, would be okay as long as my labs look normal (liver function and CBC) and I don’t have the symptoms that indicated liver problems. My endo. said in 12 years, he’s seen it once or twice, but didn’t deter me at all from taking it. He didn’t mention RAI or surgery at all, but I’ve only been dealing with this for 6 weeks, so maybe that’s why. It seems like, even if liver problems were to all of a sudden occur, we would notice it with fever, chills or sore throat, or if we didn’t have symptoms, the labs would show the problem. I think if you stop the meds., the liver normalizes again? I hope you find a solution, and I hope that my body tolerates the meds.!

Alexis

[nydiev April 27, 2012 at 8:45 pm Post count: 2]

#1171476

Don’t be scared! I’m pretty sure my endo feels this way because I’ve been on it for so long.

I hope you start feeling better soon! There’s hope!

[catstuart7 April 28, 2012 at 12:35 am Post count: 225]

#1171477

Alexis, I’m a little scared too but something my endo said made me feel a little better and might help you too. I am going to be starting PTU shortly which is even more dangerous for the liver. She said to watch out for symptoms and call the office immediately if they happen – basically that there are things to watch out for and most likely you are okay if you just stop the med. Sore throat, abdominal pain, nausea was what she told me to watch. Unfortunately I already have a sore throat now! Still a few more days before I start the med though. Long winded way of saying we aren’t flying blind – our bodies are likely to be able to tell us if we are getting into trouble.

[Harpy April 28, 2012 at 4:35 am Post count: 184]

#1171478

Just stumbled across this study on long term Methimazole use:
Effect of long-term continuous methimazole treatment
of hyperthyroidism: comparison with radioiodine

Basically, ballpark numbers:
500 GD patients started trial on Methimazole
About 40 dropped out before the 18 months, chose another path.
After 18 months all taken of Methamazole.
Within 12 months about 100 relapsed
41 had RAI and continued in trial
26 continued with Methamazole.
the rest dropped out and went down different treatment paths.
Follow up after 10 years, showed both groups had some minor negative effects, but there were no major side effects in either group, the overall cost of treatment for the Methamazole was slightly less than the RAI, but not significant.

There was no detail about what the outcomes were of the majority, about 360 that did not relapse in the 12 month period.

Not a super large trial, but it is some info.

[adenure April 28, 2012 at 8:36 am Post count: 491]

#1171479

Thanks, all. My husband would tell you all that I worry too much about everything! True! I’m trying not to as much. One day at a time!

Alexis

[Carito71 August 1, 2012 at 12:42 pm Post count: 333]

#1171480

Kimberly,

Thank for recommending this link. I saw it in another post. I wasn’t here yet when it was originally posted so I missed it but I’ve been looking for information on this subject. I too I’m very interested in this topic. I see my Endo in a week and a 1/2 and I’ll be on my 7th week of treatment with Methimazole then at 30mg/day. I’m hoping that my # are low enough for him to recommend a lower dose. The Endo that I was seeing at first put me on the 30mg/day on June 18th. I since then changed Endos but the old Endo wanted me to stop the Rx July 26. If I had stayed with him I would have already stopped it. We’ll see how things go at my appt. I’m scared the #s will not be low enough.

Do you know exactly why the Drs prefer only 12-18 mths? Is it all b/c of the liver situation?

When they started you on the Methimazole, did they start you at a large dose as they did me? How fast down the road did the Dr. lower it? Just curious.

I’ll check out the other links you posted.

Thank you!
Caro

[Darcy43 August 1, 2012 at 12:46 pm Post count: 125]

#1171481

Great post…just what I needed.

[karebear August 1, 2012 at 6:12 pm Post count: 5]

#1171482

Caro, I have been on 30mg Methimazole for a week and a half. I don’t do labs until September. My endo said that I will be on it about a year and then I will ween off of it. Hopefully go into remission as several of her patients have done. If not we will discuss the next step then. My husband was worried about the liver issue and she said to watch for a yellowing of the skin and eyes. That shows the liver is not working right. Like a newborn and jaundice.
Just wanted you to know you are not the ONLY person taking a high dose.
Karen

[adenure August 1, 2012 at 7:22 pm Post count: 491]

#1171483

Hi Karen,

I hope the methimazole works well for you. It did a great job in regulating my thyroid levels; I was at normal levels in 7 weeks (I was on 5 mg.) It allowed me to be able to get a thyroidectomy 6 weeks ago.

Just a side note though, ask your doctor to run a liver panel with your thyroid labs. I did not have any symptoms at all of liver problems, but my liver enzymes shot up and were 8 times the normal amount after 7 weeks of methimazole. I had a baseline before I started the meds., and I was normal at that point. It is only a 1% chance, and it is unlikely you’ll have an issue, but running the labs isn’t a big deal. I would ask for it. My enzymes did return to normal after I stopped the meds.

Alexis

[KimberlyOnline Facilitator August 2, 2012 at 12:54 pm Post count: 4294]

#1171484

Carito71 wrote:

KimberlyDo you know exactly why the Drs prefer only 12-18 mths? Is it all b/c of the liver situation?

When they started you on the Methimazole, did they start you at a large dose as they did me? How fast down the road did the Dr. lower it? Just curious.

Caro

Hello – there have been some studies that have not shown an improved remission rate by going longer than 18 months on anti-thyroid drugs, which is why the 12-18 month limit was recommended in the latest medical guidance. However, ironically, that same guidance document recommends that patients in Europe have a 50-60% chance of remission after 5-6 years on the ATDs.

The doctors I’ve spoken to who are opposed to long-term use of ATDs believe that the more serious side effects can happen at any time and any dose, although they are *much* more likely at high doses and also early in the treatment process.

Every patient starts from a different level and responds differently to the meds. I started on a dose of 15/mg of methimazole per day, and the doc cut that in half when I went borderline hypO after just a few weeks. Your mileage may vary!

[Carito71 August 2, 2012 at 8:55 pm Post count: 333]

#1171485

Kimberly wrote:

However, ironically, that same guidance document recommends that patients in Europe have a 50-60% chance of remission after 5-6 years on the ATDs.

This is very interesting. 50-60%? So 12-18 months could very likely be less. I wonder if longer than 6 years increases the %s. I’m thinking 50-60% is not much. It seems to be 10% per year on Rx … ???

Kimberly wrote:

The doctors I’ve spoken to who are opposed to long-term use of ATDs believe that the more serious side effects can happen at any time and any dose, although they are *much* more likely at high doses and also early in the treatment process.

That is the one thing I dislike about my situation, I’m at a high dose with 30mg/day.

Kimberly wrote:

Every patient starts from a different level and responds differently to the meds. I started on a dose of 15/mg of methimazole per day, and the doc cut that in half when I went borderline hypO after just a few weeks. Your mileage may vary!

I see, yours was 1/2 of mine and you started to slow down in a few weeks. I’m so hoping my #s are lower next time so that I can move down on the dose. It seems that a lot of people are started at a lower dose than mine I wonder how they go about deciding what dosage to give. I wonder if it just depends on the Dr or are there certain signs/symptoms they are looking for besides TSH, fT3, fT4.

Thank you for all your help. It helps reading other’s experiences. I’m glad things are working good for you. You are already into 5 years, I believe, so I hope pretty soon you enter remission.

Caro

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