[alisasiceloff]

#1060609

I know methimazole isn’t considered a ‘life long’ drug. How long can you take it for? (Assuming you monitor WBC and liver function)?

Why I ask…I’m one of those oddball folks who has cyclic graves according to my endocrinologist. I was hypo for about three years and then switched to hyper and was diagnosed with graves.

When I was hypo, I never really felt right even with treatment and ‘normal numbers’ …brain fog and fatigue…you all know the story. (: I even told my primary care physician about it and she said, well you thyroid disease and that the is the way it is.

Imagine my surprise 6 weeks after starting methimazole, I feel like myself again…no fatigue, no brain fog, some residual anxiety but most hyper symptoms are gone.

My endocrinologist says I don’t have a high likelihood of remission based on numbers and she thinks I’ll eventually need radioactive iodine.

The though of this fills me with dread….she basically told me I get to feel stupid and lethargic permanently as a treatment option. I know many people do great and their hypothyroidism is well treated but that hasn’t been my experience ):

So how long can I stay on methimozole which makes me feel normal?

[Kimberly]

#1183610

Hello and welcome – The latest medical guidance suggests taking anti-thyroid drugs like Methimazole for a period of 12-18 months, although some patients remain on these drugs longer term. In fact, we are seeing more support from doctors at our educational events for longer-term use of anti-thyroid drugs *if* the patient can remain stable on a low dose and with no side effects. I took methimazole for close to 7 years. (I’m currently not on any meds and have normal labs, but am still seeing my endo every 3 months, as I’m starting to head more hypo).

I’m not sure if your doctor was trying to be funny with the “feeling stupid and lethargic” comment. (???) Regardless of which treatment option you choose, you should be getting levels monitored consistently to ensure they stay in the “normal” range.

Take care!

[alisasiceloff]

#1183611

The stupid and lethargic was just me venting…my endo actual explains things well…I just don’t think that many doctors understand that normal values don’t always equal a properly treated patient..at least my primary care doctors didn’t …and I just accepted that I wasn’t going to feel better so I wasn’t as assertive about seeking better care..and returning to that poorly treated hypo state scares me silly

BTW…a big thank you for hosting this board. I haven’t quite lost all my hyper anxiety yet although I’m working hard on it (: it was nice to see a safe place to share and vent and get reliable info!

[shakira7]

#1183612

Hi there,

Welcome to the community!
I’ve been on Methimazole since Sept 2012, when I was initially diagnosed of Graves Disease. I started off with 5mg / day until April 2013 when this dose made me become hypo. I stopped until July, when my lab test showed that I went back to hyper. I re-started taking 5mg/ every 2 day. 3 months later, it was reduced to 5mg/3 days and so on. Since Sept 2013, I’ve been on 5mg/every 5 days, and my TSH has been stable so far.

However, my most recent period made me get worried. The amount of blood was decreased a bit, and I’m still 43…perhaps not a menopause sign (?). I remember “reduced period” was one of the symptoms I had before hyperthyroid was confirmed. So I called my endo, he sent me a new blood test requisition. I am now anxiously waiting for my results.

I’ve also lost 2 pounds, but I contribute this to my “diet” since Jan 2015 – no transfat, no sugar, no processed food…and stay with paleo. I would guess this made an impact someway to my body system.

If my lab results say that I’m hyperthyroid again, then my endo is supposed to increase the amount of Methimazole.

No, I haven’t experienced any side-effects.

So, to answer your question, as long as you don’t have side-effects, I guess you can be on methimazole on a long-term.

Hope this helps!

Sharkira7

[shakira7]

#1183613

Hi there,

Welcome to the community!
I’ve been on Methimazole since Sept 2012, when I was initially diagnosed of Graves Disease. I started off with 5mg / day until April 2013 when this dose made me become hypo. I stopped until July, when my lab test showed that I went back to hyper. I re-started taking 5mg/ every 2 day. 3 months later, it was reduced to 5mg/3 days and so on. Since Sept 2013, I’ve been on 5mg/every 5 days, and my TSH has been stable so far.

However, my most recent period made me get worried. The amount of blood was decreased a bit, and I’m still 43…perhaps not a menopause sign (?). I remember “reduced period” was one of the symptoms I had before hyperthyroid was confirmed. So I called my endo, he sent me a new blood test requisition. I am now anxiously waiting for my results.

I’ve also lost 2 pounds, but I contribute this to my “diet” since Jan 2015 – no transfat, no sugar, no processed food…and stay with paleo. I would guess this made an impact someway to my body system.

If my lab results say that I’m hyperthyroid again, then my endo is supposed to increase the amount of Methimazole.

No, I haven’t experienced any side-effects.

So, to answer your question, as long as you don’t have side-effects, I guess you can be on methimazole on a long-term.

Hope this helps!

Sharkira7

[shakira7]

#1183614

Hi there,

Welcome to the community!
I’ve been on Methimazole since Sept 2012, when I was initially diagnosed of Graves Disease. I started off with 5mg / day until April 2013 when this dose made me become hypo. I stopped until July, when my lab test showed that I went back to hyper. I re-started taking 5mg/ every 2 day. 3 months later, it was reduced to 5mg/3 days and so on. Since Sept 2013, I’ve been on 5mg/every 5 days, and my TSH has been stable so far.

However, my most recent period made me get worried. The amount of blood was decreased a bit, and I’m still 43…perhaps not a menopause sign (?). I remember “reduced period” was one of the symptoms I had before hyperthyroid was confirmed. So I called my endo, he sent me a new blood test requisition. I am now anxiously waiting for my results.

I’ve also lost 2 pounds, but I contribute this to my “diet” since Jan 2015 – no transfat, no sugar, no processed food…and stay with paleo. I would guess this made an impact someway to my body system.

If my lab results say that I’m hyperthyroid again, then my endo is supposed to increase the amount of Methimazole.

No, I haven’t experienced any side-effects.

So, to answer your question, as long as you don’t have side-effects, I guess you can be on methimazole on a long-term.

Hope this helps!

Sharkira7

[terppsi]

#1183615

Hi Alisa,

My stepmother has been on methimazole for 16 years now, no side effects so far. She takes 1/3rd of a tablet every 3 days, so it is a very low dose. Her endo wanted her to have a TT but her primary care physician told her not to worry, but I am not sure if she has Graves or only nodules. She could not remember ( so unlike me, who wants to know everything…)

[shakira7]

#1183616

OMG, I must have been falling asleep last night while I was replying to this forum. So sorry to have posted 3 identical msgs!! No, it’s not my hyperthyroid that made me go crazy. lol!

Hi Alisa, thanks for sharing your stepmother’s thyroid journey. I’m so glad to know that your stepmom has been on Methimazole for 16 yrs.

I should have my lab result towards end of next week, since it’s the Easter weekend. If I don’t hear from the clinic, then it’s a good news. I hope they won’t call me…cause that means my TSH is running low & that my dosage (5mg every 5 days) would need to be increased.

[flora]

#1183617

Hi Alisa – It’s been 2 years now on Tapazole for me, as my doctor continues to tweak my dose in search of a sweet and settled spot for my levels to be. With the dose changes, I have slipped a little hypo, then headed back toward a little hyper, then back and forth again, and so on. He has been gradually reducing my dose (presently at 22.5mg per week), and is in no hurry to switch to another treatment option at this time. Except for some joint/muscle pain, I have experienced no problems with Tapazole either, and am hoping to go into remission at some point. Keep us posted as we all journey along together, on this great forum.
– flora

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