[QZZznne]

#1060043

I was off everything from last July until May. Previous to that, I was on Tapazole from November 2010 to July of 2011. Last July I was experiencing fatigue and muscle pain. I was told I was doing well enough to stop taking the tapazole.

Recently went back and found that I am there again. I had felt fine but just had a feeling.

My results were:
FT4 3.040 low is 0.82 high is 1.77
TSH 0.005 low is 0.27 high is 4.2

I hope I did my levels correctly as you are all pro’s and I am awful at reading it on my chart.

Previously when Hyper my Blood Pressure was super high. This last visit it was perfect.

As soon as I went back on the tapazole, May 20th, I began to feel all achy again. Before taking it I was running three quick miles. Now I barely made it on a short walk to the park with my dog. Mostly my thighs which feel like they were put through a ringer they ache so much. So I actually feel worse on the medicine than off it. I realize that I need it and I wont discontinue it and I am scheduled to see the surgeon on next Tuesday. My question is does anyone else experience this achiness while on the Tapazole. It is discouraging to not be able to exercise as I am the type that is mentally so much better when I do. Now I am just a mess

Thanks…..Suzzanne

[flora]

#1179872

Hi Suzzanne,
Yes, I, too, went through the muscle (and joint!) aches and pains everywhere phase – hips, knees, feet – presumably as my system was adjusting to life with Tapazole. Like you, everyday activities (carrying groceries in from the car, hanging out a line of wash) took everthing I had. I felt 100 years old, and was convinced that some centurians out there were probably feeling BETTER than I did! Happily, after many weeks (maybe 8-10 long weeks), these have mostly subsided now. I hope you’ll experience some relief soon, too.
Flora

[Kimberly]

#1179873

Hello – Sorry to hear that you are dealing with a relapse. Muscle/joint pains are a potential side effect of anti-thyroid drugs, but it would be a good idea to report these symptoms to your doctor so that he/she is aware. As for continuing with exercise, I would suggest talking to your doc about that as well. Patients are generally advised to avoid strenuous exercise while hypER to avoid placing extra strain on the heart.

In the meantime, hopefully you can find some alternative activities (reading, gentle yoga, meditation, etc.) that can give you some peace as you get through this part of your treatment.

Take care!

[QZZznne]

#1179874

Thanks for the encouragment. I can’t wait to see the surgeon on Tuesday. He has no personality whatsoever so I am told by previous patients but he is one of the best so I can deal.

Took today off from work just to chill out. I love to run and miss it so much more for mental than physical. For now I will just hang out.

Sick of the aches and pains………been reading a lot!

[Boomer]

#1179875

Hey there!

When I started on Tapazole (Methimazole*) as well as a few days after any dose increase I had joint pain, muscle pain, and more cramps than I’ve ever had mostly in my feet of all places.

I was told by my Endo that this is indeed a normal side-effect and that rash, nausea, vomiting, and fever are the ones to call him about right away.

I swear the cure feels as bad as the cause sometimes. Just think about how tough this makes us though. The Graves Gang: Fear us.

Hang in there and stay positive!

Health and good vibes comin’ atcha,

Boomer

*corrected typo

[QZZznne]

#1179876

Boomer wrote:

Hey there!

When I started on Tapazole (Nethimazole) as well as a few days after any dose increase I had joint pain, muscle pain, and more cramps than I’ve ever had mostly in my feet of all places.

I was told by my Endo that this is indeed a normal side-effect and that rash, nausea, vomiting, and fever are the ones to call him about right away.

I swear the cure feels as bad as the cause sometimes. Just think about how tough this makes us though. The Graves Gang: Fear us.

Hang in there and stay positive!

Health and good vibes comin’ atcha,

Boomer

Graves Gang! LOL…..thanks Boomer.

[karenz516]

#1179877

@ Boomer – love the “The Graves Gang” I feel better already!!!!

[ChristinaDe]

#1179878

Suzzanne ~ I also had very painful “aches” & weakness while on Tapazole (& beta blockers) despite “normal” lab levels. And anxiety off the charts!!! Never knew what to attribute all that to. My doc at the time said it was all unrelated to my meds. (I had an irritating endo back then!!!) In fact, I was one of those folks that felt worse during anti-thyroid drug treatment than I did before (except for the tremors and racing heart – those were gone). But I’ve heard people say that if you stick with it, your body adjusts and they go away. I didn’t stick with it (only took them for a couple of months)…too weak mentally to deal with it all I guess. So I jumped over to a definitive treatment (especially since in my case they were saying that I was not a likely remission candidate – had Graves’ for over a decade, 51 years old, had large nodules, etc). But, I think that I’ve heard many talk about how they toughed it out and feel totally fine on anti-thyroid meds once they grew accustomed to them & found their sweet spot on them.

There was some talk that part of it may have had to do with low Vitamin D, calcium, magnesium, iron and B12 levels. Things I’ve since addressed.

Isn’t Graves’ grand?

P.S. Got to be said…I love your humor Boomer!!! Wish you’d been around when I was at my sickest!!!

[QZZznne]

#1179879

Christine –

I am hoping for the best but this happened at the end of my last bout with the Tapazole. Took a few months before I had the aches. Now, round 2 and it was almost immediate. I am looking for an end too. Surgeon on Tues morning to see when and what not. I actually can’t wait even though I am scared as hell!
I am 49 and PMS is bad enough now, I don’t need this again!
Suz:)

[SueAndHerZoo]

#1179880

Boomer wrote:

Hey there!

When I started on Tapazole (Nethimazole) as well as a few days after any dose increase I had joint pain, muscle pain, and more cramps than I’ve ever had mostly in my feet of all places.

I was told by my Endo that this is indeed a normal side-effect and that rash, nausea, vomiting, and fever are the ones to call him about right away.

I swear the cure feels as bad as the cause sometimes. Just think about how tough this makes us though. The Graves Gang: Fear us.

Hang in there and stay positive!

Health and good vibes comin’ atcha,

Boomer

Ooooohhhhhh…. that sounds like the perfect thing to put on the back of a leather motorcycle jacket! Do you have a logo to go with it????
Sue

[Ann1960graves]

#1179881

I’m sorry to hear about you having aches. I take ibuprofen and it helps with all my symptoms especially my achy eyes. Good luck.

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