Great post…just what I needed.

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

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

Carito71
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!

Kimberly
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
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
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

Carito71

Kimberly
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 … ???

Hello - Yes, the remission stats I've seen out of the U.S. after 12-18 months of therapy are around 20-30%. I've only seen one published study that showed higher rates than 50-60%, and that was a study out of Japan involving “block and replace” protocol, and to my knowledge, the success of this study has never been replicated.

karebear
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

Hello Karen,

Welcome to the forum. I'm glad you found us. I wish you all the best with the Methimazole. I'm glad that your Dr. is wanting to try it out for a year. I would recommend making sure, if all goes well with the Methimazole, that you are in remission (I'm still trying to learn what remission entitles) before discontinuing it. I've read that stopping it when your TSI #s are still elevated can send you back into a hyperthyroid state again. Your Dr will be doing labs for the liver and white blood cell count I'm sure. Mine is and up to now, my liver #s have not increased. They are high but not more than 3 times the normal so my Dr keeps me on the Methimazole. I just got my labs back. Take a look at them when you get a chance. Thank you for letting me know you too are taking a high dose. It can get scary. I think they will lower mine soon though. Keep us posted and thank you for the advice

Smiles,
Caro

Kimberly
Hello - Yes, the remission stats I've seen out of the U.S. after 12-18 months of therapy are around 20-30%. I've only seen one published study that showed higher rates than 50-60%, and that was a study out of Japan involving “block and replace” protocol, and to my knowledge, the success of this study has never been replicated.

It is almost like we would have to be on it for 10 years to achieve a 90-100% (if there is ever a 100% probability).

What exactly is “block and replace”??

Thank you for your input.

Caro

Hello - In the studies I've read, the remission rates still tend to level out at 50-60%, regardless of length of time on the meds.

Traditional Block & Replace therapy involves using large doses of Anti-Thyroid Drugs to shut down thyroid production and taking replacement hormone to normalize thyroid hormone levels. However, this option is not commonly used in the U.S.. The Japan study that I mentioned showed that the results of B&R were highly successful – but these results haven’t been replicated here in the U.S. Also, there is concern that the higher doses of meds may be correlated with a higher rate of side effects, including as liver and white blood cell issues.

Another option, which was mentioned by a presenter at our 2011 Boston conference, is that it can sometimes be easier to stabilize patients on Anti-Thyroid Drugs by giving the patient a consistent dose of ATDs, and then supplementing with a small amount of thyroid hormone replacement – if needed – to make sure the patient doesn’t go hypO.

Thank you for the information Kimberly.

Caro