[phuffman39]

#1058944

Survey: If you chose medication (tapazole/PTU) RESULTS ???
Just curious if you chose medication: Did it work? How long to get Euthyroid? Are you still in remission?

I am trying to decide on therapy. Thanks for your input!

[keesephoto]

#1171125

I did meds only for 6 years and wish I would have NEVER gone that route. I’m just amazed at the ppl that have success because of how badly it went with me. I wish I’d have come up with the RAI money 6 years ago because I would have been in a MUCH better physical state than I am now.
Basically I went synthriod…but my levels NEVER stayed the same. Every month or two I had to come back (at most) and do another blood test and change meds again.
I went hypo/hyper/more hyper/less hyper/flatline/hypo/and on and on.

All those times I was high or low and on the wrong dose (for however many days or weeks) really hurt my body and I gained weight/had more heart palps/eye probs/fatigue/grouchiness/etc.

For me, it was not cool at all.

[adenure]

#1171126

Hi! I’ve only started my treatment 3 weeks ago. I chose methimazole. My endo. put me on 5 mg. daily. I think I’m feeling better than I did before taking the meds., but I can tell that I’m no where near my normal self before the Graves kicked in. I figured I’d try the medicine first as it seems the least invasive and permanent. I’m hoping for a good outcome and remission, but time will tell. I also have 4 small children including a 4 month old, so taking anything radioactive right now wouldn’t work for me.

I know one person who did RAI, and she said she wouldn’t suggest it to anyone. That’s one of the hard things about this, everyone is different. Everyone’s body reacts differently to treatments, and everyone’s particular problems with Graves are different. Funny how certain treatments are like a miracle to some, where to another, it’s a disaster. So, my thought process was to start with medicine, see how it goes, and then go from there. I get my first labs done mid-May to see how the methimazole is working. We’ll see… in the mean time, trying to stay positive and do the best I can.

Alexis

[Claire95]

#1171127

I was on Tapazole for 7-8 months. The dosage was slowly decreased because I became hypo fairly quickly. After I stopped taking Tapazole I was in remission for five years.

[adenure]

#1171128

Thanks for you post Claire- it gives me hope. Did you have insomnia? If you did, when did it go away? What was your dosage?

[Kimberly]

#1171129

Hello – I chose methimazole when I was diagnosed in 2007. I actually went pretty close to the hypO range in a matter of a couple of months, as my doc’s office at this time was dosing based on TSH. (Now they follow the guidelines from the American Thyroid Association and the American Association of Clinical Endocrinologists to use Free T4 and T3 instead).

I’m not in remission, as I am still taking a low dose of the meds, but I feel pretty well. I’ve occasionally had my levels swing towards the hyper or hypo end of the range, but an adjustment in dosage generally does the trick.

Personally, I’m not ready to pursue a “definitive” (medical jargon for “permanent”) solution. However, other patients would rather choose RAI or surgery right out of the gate. As Alexis said, every patient is different. I know of patients who have had *better* outcomes (remission) with Anti-Thyroid Drugs and also patients who have had negative side effects with the meds.

If you use the “search posts” function in the top right-hand corner of the screen and look for posts from James, he is in an extended period of remission after (I believe) three different rounds with Anti-Thyroid Drugs.

It’s important to do your research and make a decision that you are comfortable with.

[adenure]

#1171130

Another question for those of you who were in remission for a certain amount of time… What caused you to go hyper again? Was it stress or a major life change, child birth? I just wonder if it’s possible to stay in remission if I’m really careful about my life and the factors in it. Not that we can control everything obviously, but I was curious. Did you go back on Tapazole after a certain time in remission?
Alexis

[phuffman39]

#1171131

What happened after 5 years?

[Claire95]

#1171132

I had a reoccurance after five years of remission. I’m not entirely sure what caused it – the first time I was hyperthyroid was right after my daughter was born. I’m not sure what my initial dosage of Tapazole was. No problems with insomnia.

[phuffman39]

#1171133

Was it worse the second time? What treatment did you choose this time?

[QZZznne]

#1171134

I have been on methimazole since November 2011 with a monthly visit to the endo. This past month she told me that she will give me just 3 more months on it and that is it. My thyroid isn’t responding as fast as it should. I didn’t realize there was a time limit.

[Bobbi]

#1171135

People fall out of remission because Graves is an autoimmune disease, not because of anything they have done right or wrong. Antibody levels change for no well understood reason. If you know of someone with rheumatoid arthritis, for example, their disease will make them majorly miserable at times, and alleviate at times (remit). People with MS will have periods of rampaging disease, and then periods where the disease remits. It is the nature of an autoimmune disease. Remission, by definition, is a temporary alleviation of symptoms, nothing more.

[Kimberly]

#1171136

I’ve never seen a great definition of remission for Graves’, except that patients who are able to go one year or more without anti-thyroid drugs are considered to be in “remission”.

If you look at the medical definition for cancer and remission, though, remission can be either considered “partial” (temporary) or permanent.

For patients who have achieved remission on Anti-Thyroid Drugs, you certainly have to be aware that hypER symptoms *could* come back…but I don’t know that it’s a guarantee that it *will* come back.

[Author]

Posts