[herring]

#1060284

Hi, I’ve been on Neomercazole/Carbimazole for about 2 years now, and my specialist has told me that that is longer than people are normally on it. She was hoping I’d go into remission but that hasn’t happened, so she says its time to look at something different. Is there a reason you can’t just stay on Neomercazole permanently? It was controlling everything fine. Surgery or RAI sound pretty scary in comparison.

[Ellen_B]

#1181754

Each of the three treatments has its risks. The risks are different for each. One can say the same for the benefits too. Knowing what the risks are is important and being able to discuss them with your doctor is important too.

One of the reasons doctors do not want you to stay on the medication may be because of the possible side effects—which affect the liver and the white blood cells. Are you able to maintaining your thyroid levels at a very low dose or do you have to be on a high dose? Ask your doctor what kind of difference that makes. Ask your doctor if doing liver tests and white blood cell tests make it less risky. Treatment and recommendation must be individualized. Your doctor will know what other factors should be taken into consideration.

I will say that I have heard more than one thyroid specialist say that staying on antithyroid drugs for longer than two years is an option. I also know that the risk for affecting your white blood cells is very low. I know firsthand of many patients who are doing well while being on a very low dose of medications for more than two years.

I wish you the best of luck in finding the best treatment for yourself.

Ellen

[snelsen]

#1181755

Sounds like you are in Canada or Europe!
But the ATD is pretty much the same, I understand.

Since you have been on Carbizamole for 2+ years, I imagine you have been having labs. If you don’t already know, ask if they have done additional labs in addition to your thyroid labs, usually a liver function lab and a CBC, which includes a WBC (white blood cell) count. As Ellen said, ask your endo to discuss this more with you. Ask her if there are any recent papers and studies taking a look at being on ATD’s longer that two years or so.

In answer to your question about people being on ATDs permanently, I am sure there are no studies or evidence about this, for it is only in recent times, that a few people have been on ATD’s for several years. Kimberly, our facilitator, will probably address this. i think one other person has been on ATD’s a long time, a former facilitator. But it is not common.

And I am guessing she (your doc) might be used to Graves’ patients being on ATD’s, then moving on to RAI or TT. That is the usual process. Generally, as you have probably learned, ATDs are used to get us safe, and not hyperthyroid, and then RAI and TT are considered the permanent treatments. And there are pros and cons to each one, as Elllen mentioned. But of course, whatever you end up doing, you need to be well informed on all of this.

I know I have said the same thing several different ways, but to summarize the standard of care has not been to regard ATD’s as a permanent treatment.
As you may know (and should ask if you don’t) there CAN BE some serious side effects from ATD’s. They tend to occur more at the beginning of taking them. But that is probably one of the main reasons that ATD’s are not considered a long term therapy.

If you are not familiar with all your labs, I suggest getting and keeping copies of recent ones, and dictated summary some of your visits. Medicine is changing rapidly, and many patients can not retrieve all this information online.

If you feel strongly about this, continue to ask for it, see how it goes, and if a doctor will follow you closely with labs. I think each person on ATD’s a longer time, and there are not that many of them yet, realizes that at some point in their lives, they may need to reconsider this, if they become hyper, or if the med side effects causes other medical problems
Shirley

[James]

#1181756

Sometimes it is difficult to find a Dr. that will support the decision to stay antithyroid drugs (ATD’s) longer than 24 months. I can relate to that, but in the end my Dr. supported my decision as he couldn’t find a medically compelling reason for me to discontinue ATD’s, especially since I was in exceptionally good health. I had the same mindset as you, that is; it’s working so why not stay the course? I was on and off ATD’s for about 10 years (mostly on small maintenance doses during that period of time). I finally discontinued use of ATD about 10 years ago, and have been completely in remission ever since. One thing you don’t want to do is go off of the meds cold turkey. With a Dr’s assistance wean very slowly. I almost always relapsed when discontinuing the meds suddenly.

Take care!

James

[Raspberry]

#1181757

There is a wide degree of variation in how different doctors approach treating GD. One doctor will say 18 months ATD’s and that’s it! One might say no PTU ever only methimazole Another might say if you relapse once ATD’s are no longer an option, out with it! Or another says that’s okay, but if you relapse twice out! Some say testing the antibodies matters, others don’t. So basically if in doubt get a second opinion, it might surprise you.

[Kimberly]

#1181758

There aren’t a ton of studies on long-term use of anti-thyroid drugs, but this is one of the better-known ones:

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

http://www.ncbi.nlm.nih.gov/pubmed/15879354

The medical guidance that is used here in the U.S. recommends 12-18 months, *but* leaves the door open for longer-term use if that is the patient’s preference. (And, of course, if there are no side effects).

We recently hosted patient education events in Baltimore and Chicago, and presenters at both events were supportive of longer-term use of anti-thyroid drugs. I’ve been taking them myself for 6+ years and don’t have any plans to pursue a “definitive” option at this time.

Hope this helps!

[herring]

#1181759

Wow, thanks, this is way more information than I was expecting.

I was on 15mg/3 tablets a day for most of the last year, I don’t know if thats a low or high amount? It was twice that when I started. My specialist did make me stop cold turkey and I went hyper again pretty quickly.

I’ll definitely ask about the liver function and white blood cell count. Thanks for the help!

[brondack]

#1181760

I have been on ATDs for just over a year and while my endocrinologist seems to want me to decide soon between surgery or RAI, I asked him if I could delay that decision and he reluctantly agreed.

Recently, I had the opportunity to speak with a noted endocrinologist from Mass General who provided me with two interesting points – other than the potential for liver problems, there really are no known negative side efects from long term use of ATDs and for MOST people, the liver issue typically is found within the first couple of months.

He also noted than actually the biggest issue with long-term use of ATDs is the patient not taking the medication as prescribed – ie – stopping or forgetting to take it.

[snelsen]

#1181761

brondack,
bravo to you.
That is the best summary, including what the Mass General endo doc said about compliance with meds for taking ATD’s over the long haul. As mentioned in the past by Kimberly and other facilitators, the issue of liver problems generally occurs when initially beginning an ATD.
Regarding labs, we need to continue to have them now and then., regardless of which treatment we select.
Shirley

[shakira7]

#1181762

Hi, I started with 5mg Methimazole/day since end of sept 2012 and stopped cold turkey on April 3 2013. My TSH was 6.4 but TSH antibodies was still high.
My lab in mid-june showed I was hyper again with TSH 0.03, just like that.
Given my antibodies being high when I stopped in April with 2.6, go figure.
Then I restarted Methimazole 5mg/every other day since July 3 until end of October.
Since end of October, I’ve been on Methimazole 5mg/every 2 days.
My endo actually wanted me to stop, as my lab showed TSH, T3 and T4 stable within the normal range, however, the TSH antibody receptor is still above normal range. This is why I told him I’d like to remain on my med.
I am scheduled to continue this dosage until end of Jan 2014, and I will most likely insist to my endo that I stay on this med.

@James, wow 10 years of remission, good for you! I wish I can go on perm remission, however, I have an appt with an ENT surgeon in jan. I will see what he says.

Reading all your msgs, I am now gearing back to remaining on ATD on long term with the smallest dosage possible. In fact, depending on the lab result, I am planning on reducing the Tapazole to 5mg/every 3 days.

I haven’t yet decided if I will go with TTX or give my thyroid another chance to see if it will calm down its activity & remain calm. Part of myself wants to remain on Methimazole until the antibody receptor reaches the normal range.

The only side-effect that I am experiencing from ATD is hair loss after shower. After my hair is completely dry, I brush them and I see a huge bulk of hair on my brush. I’ve been using AVEDA product and also an organic shampoo and it seems to help a little.

I’ve been hearing about hairloss side-effect with Synthroid as well, which is why I am not completely excited about TTX.

Like everyone says, it seems like each 3 options have its pros and cons.

[Teri_Odegaard]

#1181763

I have been on ATD since June 2010. Started out on very high dose. I can not remember when I went down to 5mg 3 times a week. I was taken off meds twice and in 3-5 days I was a “basket case” — could not talk without stuttering, think, remember, concentrate, drive and walk. I stay on the meds because of this. I know the risks of RIA and surgery and am scared out of my wits that I will be a “basket case” case after. My liver and white blood cells are good. However, no 2 people are alike, so they effects may be different.

[terppsi]

#1181764

Hi herring,

my stepmother has been on methimazole for the last 15 years without any complications, but then she only takes 1/4 pill twice a week, I am not sure this has an influence.

[Author]

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