[catherine]

#1059071

Hi there

I realise everyone’s different and there is no black and white answer to this question…but I’d really appreciate knowing how different people experienced stopping their ATD treatment.

Was there a transition period where things were a bit up and down before settling again or was it a smooth transition? Also, if you didn’t achieve remission, how long did it take before the hyper symptoms set in again?

I’m due to stop my treatment end of May. Stress levels at work have gone up and the next few weeks are going to be the same. I’m hoping my endo is right and I won’t feel anything at all but thought best to check with those who’ve actually been in my shoes to feel confident in that advice…and if that’s not the case I can prepare as much as poss for all eventualities!

Thanks for reading. xx

[Bobbi]

#1171942

I haven’t been through what you are experiencing, but I do wish you good luck and a long remission.

[paleblue]

#1171943

I was taken off ATDs once about 2 years ago. I went in a month afterwards, for testing, and my antibodies and thyroid levels were still fine, but then I got sick with a bad cold, and after that, my heartrate went up, and stayed up, and I knew the graves was back. I called, went in, and sure enough, the labs agreed.

Now, I have had normal thyroid levels and antibodies for over a year, and I hope to try to see if I can keep these levels without ATDs soon. I have an appointment Thursday, and my doctor and I plan to discuss it then. Right now I am taking 1/4 of a pill every other day and have done so for months.

Another thing is that up until this year, I have spiked in the winter. So that is why we didn’t take me off the ATDs this winter, even w/ perfect levels. If I get a cold, it seems my immune system may be revving up, and doesn’t know when to quit. That is our guess.

For me, and I believe everyone is different, I use a heartrate monitor, and that is my best tool for seeing where my levels are if I don’t have labs. Every time my heart rate spikes, I go in and get tested, and my thyroid labs show a spike, and the same when my heartrate falls too low. My body also tells me. I run, and so the muscle weakness that comes from too high of thyroid levels, leads to knee pain. That is another sign that worked well for awhile. However, the last spike was not accompanied by knee pain–just an accelerated heart rate. Maybe I caught it sooner??

All of that to say, that for me, I have learned to listen to my body–and in my case the heart rate monitor has helped. That may not work for everyone, and it may not always work for me.

If I do get to eliminate my meds, I’ll check back in on Thursday and let you know. It’s exciting, but for me scary b/c I don’t want to have to start back over at square one. Good luck!

[snelsen]

#1171944

Hi, you will probably hear from Kimberly when she sees your post. That will be helpful to hear her experience. I think she has been on ATD’s for several years.
shirley

[Kimberly]

#1171945

Hello – As Shirley said, I have plenty of experience taking anti-thyroid drugs, although I have not had the experience of going *off* of them! However, I can tell you that the American Thyroid Association and American Association of Clinical Endocrinologists released some guidance last year that recommends testing antibody levels (TRAb) prior to withdrawing Anti-Thyroid Drugs, as normal levels indicate a better chance at remission.

You might also search posts from James, as he is entering (I believe) his 9th year of remission after taking ATDs. He’s a great success story.

Wishing you all the best!

[James]

#1171946

Catherine,

It looks as if you are getting some great feedback in this thread.

I agree with Kimberly in that you should request that you have antibody testing done prior to withdrawing meds. If I were to turn back the clock to the times where I withdrew my meds pre-maturely, I would have done things totally differently. The “cold turkey” approach never seemed to work for me.

Paleblue’s approach seems particularly sound in that there is a gradual weaning of the ATD’s, and she is having her antibody levels tested regularly. I also had experienced catching a cold (virus), having a revved up immune system that sent my thyroid function back into orbit. The good news was that with each subsequent relapse, it was easier for me to get my levels back down to where they should be. I eventually learned that I had to wean from ATD slowly (with my Dr. onside). I was on 2mg methimazole/day (15mg/week) for about 3 years prior to weaning off totally . . . . THAT seemed to work for me (everyone is different though). Since that time I have remained at normal thyroid levels. In the early years of remission, I would panic when I caught a cold, or my stress levels would go up (stress is a known trigger). Since then, I hardly think about it anymore, but am well in tune with my body and know when I should get tested.

Keep copies of your lab reports and take notes associated with those results. I found that that was helpful.

James

[catherine]

#1171947

Thanks everyone for your messages, there’s some great advice there. I really appreciate it.

Paleblue – I’m going to invest in a heart rate monitor, I hadn’t thought of that – thank you! So simple and can save my heart rate increasing any further due to the anxiety of worrying if my heart rate has increased! I also suffer from knee pain and have done for a couple of years now. It started after a minor go kart accident where I really bruised my knees and I thought all my pain was related to that, though x-rays and physio could find nothing wrong. I’m now wondering if the timing was perhaps a coincidence and some of the pain has in fact been thyroid related. I have some minor discomfort still which I’ve put down to the pains I’ve experienced from taking carbimazole. I’ll bear that in mind too for when I’m off the meds. I hope you get to come off your meds and it works for you this time. Please do let us know how you get on today with your doc.

Kimberley and James – thanks for the info about the TRab test. I don’t have another appt with my consultant till July, 5 weeks after I’m supposed to stop the meds (1st June). I’m trying to pluck up the courage while I’m writing this to contact her for her thoughts on it. I know that sounds pathetic but I feel reluctant to…though I know for my own peace of mind I should. My reluctance stems from thinking she already thinks I’m a hypochondriac and won’t take me seriously as I’ve contacted her a few times in between appts. Need to get that out of my head. At the end of the day it doesn’t really matter what she thinks of me! There…have given myself a talking to – I’ll email her.

It’s really encouraging to hear you’re in your 9th year of remission James – gives me hope. The stress thing has been on my mind. My boss is being really supportive and has told me to take whatever time I need and given me the ok to pay for whatever cover’s required. Hopefully a couple of weeks off the meds and I’ll feel more confident and able to handle things at work again. There’s just a lot of bad timing going on at the mo…my assistant left and I’ve been interviewing this week (more next week) with a view to training someone in the next few weeks. I also have an exam next Friday. It’s all temporary stress and could be much worse.

Thanks again everyone. Hope you’re all having a happy day xxx

[paleblue]

#1171948

Hi Catherine,

I just wanted to let you know that the doctor did recommend that I go off the meds. I’m excited and a little nervous, but I guess it’s a good problem to have. I have had to be so patient, and that’s not easy. Anyway–good luck with your journey. Keep us posted, and I’ll keep everyone posted as well.

So glad you are going to get a heartrate monitor. Don’t get an expensive one–I think mine was 30 bucks from Amazon. I’ll be using it to keep tabs on the thyroid. I have an appointment in 6 weeks, where the doctor will check my levels to see if they are still stable. I am wishing positive results for both of us.

[Author]

Posts