# No remission



## rkh3 (Feb 27, 2010)

Diagnosed with Graves 3/10' been on Methemizole till the endo took me off 7 weeks ago. We were hoping for remission but the blood tests, don't have the #s, showed I was going hyper again. Symptoms started again also, shaky, dropping weight (only a couple lbs so far), diarrhea. We talked about options, RAI and surgery. Since my eyes, mostly the right, are effected she said RAI is out and the only real option is surgery. I am seeing the opthomologist 9/2 to see what he says. Endo said there is no rush and to go back on Methemizole, but I'd rather not, deal with the symptoms for a couple months until surgery. Endo said that I would be out of work after surgery 1.5 weeks and feel generally crappy for a month. Those that have had surgery, is that your experience?


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## Andros (Aug 26, 2009)

rkh3 said:


> Diagnosed with Graves 3/10' been on Methemizole till the endo took me off 7 weeks ago. We were hoping for remission but the blood tests, don't have the #s, showed I was going hyper again. Symptoms started again also, shaky, dropping weight (only a couple lbs so far), diarrhea. We talked about options, RAI and surgery. Since my eyes, mostly the right, are effected she said RAI is out and the only real option is surgery. I am seeing the optomologist 9/2 ton see what he says. Endo said there is no rush and to go back on Methemizole, but I'd rather not, deal with the symptoms for a couple months until surgery. Endo said that I would be out of work after surgery 1.5 weeks and feel generally crappy for a month. Those that have had surgery, is that your experience?


This may be your best bet because in all the years I have been on forums for hyperthyroid, I have never ever seen permanent remission (meaning for the rest of one's life.)

Surgery is also good because pathology will give it a good going over. There is a high incidence of hyper and cancer.

I have not had the surgery so we will have to rely on the comments of others who have.


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## webster2 (May 19, 2011)

rkh3 said:


> Diagnosed with Graves 3/10' been on Methemizole till the endo took me off 7 weeks ago. We were hoping for remission but the blood tests, don't have the #s, showed I was going hyper again. Symptoms started again also, shaky, dropping weight (only a couple lbs so far), diarrhea. We talked about options, RAI and surgery. Since my eyes, mostly the right, are effected she said RAI is out and the only real option is surgery. I am seeing the opthomologist 9/2 to see what he says. Endo said there is no rush and to go back on Methemizole, but I'd rather not, deal with the symptoms for a couple months until surgery. Endo said that I would be out of work after surgery 1.5 weeks and feel generally crappy for a month. Those that have had surgery, is that your experience?


Hi, I had surgery just over a week ago. I feel pretty good, much better than before the surgery. This surgery was only for half, as I had the other half removed 20 years ago.

About work, I have a desk job, and could probably return half days by mid week. I don't think I will go back until the 15th as that was the date I selected.

Mine was cancer, and I am glad it was removed. It hadn't gone any into lymphs etc. so I am pretty much done except for the blood work every 6-8 weeks.

I can't tell you how nice it is not to have that jittery feeling, and I am hoping the mood swings are a thing of the past.

Best wishes with your decision. Many of folks will offer their story too to help you out.


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## Lovlkn (Dec 20, 2009)

rkh3 said:


> Diagnosed with Graves 3/10' been on Methemizole till the endo took me off 7 weeks ago. We were hoping for remission but the blood tests, don't have the #s, showed I was going hyper again. Symptoms started again also, shaky, dropping weight (only a couple lbs so far), diarrhea. We talked about options, RAI and surgery. Since my eyes, mostly the right, are effected she said RAI is out and the only real option is surgery. I am seeing the opthomologist 9/2 to see what he says. Endo said there is no rush and to go back on Methemizole, but I'd rather not, deal with the symptoms for a couple months until surgery. Endo said that I would be out of work after surgery 1.5 weeks and feel generally crappy for a month. Those that have had surgery, is that your experience?


When you receive a DX for hyperthyroidism taking anti thyroid meds for 18mos to 2 years is suggested to see if your body can adjust and go into remission.

It sounds like your doctor put you onto anti thyroid meds and took you off. It's no surprise you are not in remission. Your endo is wrong and you need to be put back onto Methemizole immediately.

Anti thyroid medications can help calm eye issues. I would agree with your doctor to avoid RAI because of your eye issues and want to mention that they may calm down once stabilized on anti thyroid meds. It sounds to me like your doctor is forcing you into a "permanent" decision. Go back on anti thyroid meds - get yourself stabilized and research your options before making a decision to remove your thyroid.

Were you having adverse reactions to the anti thyroid meds? I took Tapazole for 4.5 years and made an informed decision to have surgery after failing to reach remission. I did not work at the time and cannot give you a time frame on recovery to return to a job but 2 weeks sounds about right.


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## rkh3 (Feb 27, 2010)

I have read staying on Methemizole is recommended for 12-20 months prior to attempting remission. I have also read that long term use could cause a drop in white blood cells, allowing infections, and liver damage. 
Since neither of us are MDs I will go with my endocrinologist's guidance.


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## AZgirl (Nov 11, 2010)

rkh3,,, THAT IS INCORRECT ABOUT STAYING ON MEDS FOR ONLY 12-20 MONTHS!!! MANY STUDIES HAVE INDICATED THAT TO BE NOT TRUE... ESPECIALLY METHIMAZOLE... people have been on for over 20 years!!!!this is the way they treat graves in europe!!! get a 2nd opinion... nothing wrong with TT or RAI (i guess, not for me though) but your endo is wrong about staying on meds.


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## AZgirl (Nov 11, 2010)

Not true at all. This is an antiquated way of thinking, and dates back to when the medical community thought you had to take high doses of MMI and PTU. Now that we have learned low doses work just as well as high doses, you can be on ATD therapy indefinitely.

My son, at age 9, was put on a 4 year course of ATD (5mg MMI). But his pediatric endo said he had some patients who needed 10 years of therapy before the autoimmune disease (TRab antibodies) were negative - which is what remissinon from Graves is. He went into remission at age 12 and has remained in remission ever since. He is now 17 and runs Cross Country (averages running 8 miles per day) and is in an Internation Bacc. program at his high school. Doing fantastic.

I began MMI therapy using the same protocol in 2006 -- went into remission 3 years later using 2.5 mg MMi and 25-64mcg Synthroid ad needed. I've been off ATD meds since Dec 2006 and doing very well in remission.

ATD therapy needs to continue until TRab antibodies are no longer attacking your body (which includes eye, brain, skin, bone, thymus, pituitary). Getting rid of the thyroid does not stop those antibodies from affected your other tissues. MANY people develop the eye issue 5 or more years AFTER Rai because that treatment is WELL KNOWN to cause these antibodies to increase.

There are a lot of proven studies that point this out. RAI is always the absolute LAST choice of treatment. Exhaust all other options before taking that radioactive iodine.

And if you are a person who has known bad reactions to iodine in the first place, this would really be a strong indicator to have deeper investigations about it. RAI increases inflammation, and that often includes immune cells that are involved with allergy too.

Best to you!
QUOTED FROM THYROID STUDIES IN GENERAL MEDICINES


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## Andros (Aug 26, 2009)

rkh3 said:


> I have read staying on Methemizole is recommended for 12-20 months prior to attempting remission. I have also read that long term use could cause a drop in white blood cells, allowing infections, and liver damage.
> Since neither of us are MDs I will go with my endocrinologist's guidance.


I could not agree more; that is why you have an endo. Also, one must make the decision that one is comfortable with.

None of us are doctors that I am aware of! LOL!!


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## rkh3 (Feb 27, 2010)

Thank you for all of your opinions. I will follow my 35 yr old endo's advice, certainly not old school. 
Again, thank you. 
End of thread...


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## patient50313 (Aug 27, 2011)

Do you consume aspartame or any other artificial sweetner?

I was consuming a lot. I had read that some doctors believe that aspartame is the cause of a lot of auto-immune diseases and neurological disorders and they recommended to eliminate it from your diet. So, I thought I'd give it a try to see if it would help me.

I was taking 30 mg of methimazole a day for my hyperthyroid and when I stopped consuming aspartame my symptoms improved DRAMATICALLY in just a manner of a few days and I could no longer tolerate my thyroid medicine, so I stopped taking it. I now take a dietary supplement called L-Carnitine which gives you the same results as methimazole without all the side affects. Get just the plain version of L-Carnitine. I find it works best for me. Once I started taking it my hair stopped falling out and I rarely find hair in the shower.

My doctor was wanting to destroy my thyroid as well a few months ago but that is no longer necessary now. I would eliminate all artificial sweetners from your diet and get on L-Carnitine before doing the surgery. You might be surprised that you don't need the surgery or the methimazole.

I continue to follow-up with my Endo Dr who recommends that I stay on the L-Carnitine since it's working and I haven't touch any artificial sweetners in over a year. He says it's perfectly safe to take, so I've been taking 500 mg in the morning and 500 mg at bedtime.

Hope this works for you as well as it has for me. Good luck to you.


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## Andros (Aug 26, 2009)

patient50313 said:


> Do you consume aspartame or any other artificial sweetner?
> 
> I was consuming a lot. I had read that some doctors believe that aspartame is the cause of a lot of auto-immune diseases and neurological disorders and they recommended to eliminate it from your diet. So, I thought I'd give it a try to see if it would help me.
> 
> ...


Got my answer; 1 Gram per day. That is not much; they say up to 6 Grams per day is the usual. Good for you!


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