# Can't take Methimazole....RAI?



## antn (Nov 4, 2010)

Hi

I posted on this board back at the end of 2010 because I'd just found out that I had a thyroid problem. At the time I my husband had just added me to his health insurance Nov. 2010 and it wouldn't become active until Jan. 2011.

Anyway while waiting for the insurance to kick in My mom convinced me to try natural remedies because she said the real meds would only make me more sick. Any way so the insurance kicks in and I still don't go to the endo. Fast forward to this year and I'm not getting better with natural treatments. So I finally go to the Dr. and am placed on 40mg/day of methimazole.

For three weeks every thing was great and I was feeling better. Then one day I start to itch all over. I'd just bought a new mattress so I called the company to come pick it up because I thought it was making me itch. They actually came and switched out the mattress. As the day progressed the itching continues to get worse then later that night I started to get the chills added to the itchiness. I didn't really pay it any attention because I was watching the NBA championship. By the time the game is over I'm freezing and praying I'm not getting the flu. The next day the itching is worse, chills continue, I'm light headed and I have terrible pain in my lower back. I call the endo who tells me to stop taking the meds and call him on Monday (it was a Friday). By nighttime everything is worse and I'm unable to stand up with out my vision starting to dim and feeling like I'm about to pass out. I couldn't even hold a cup of water to my mouth because my muscles were so week. Also my appetite was gone from earlier in the morning.

By sat. afternoon all symptoms but the itchiness is gone. By Monday all the symptoms are gone. I couldn't speak to the endo on Monday because his phone keep going to the answering service.

I finally speak to him on Tues. and he states that my only options are RAI or surgery. He wants me to do the RAI in three weeks. He hasn't asked me to come back for any additional testing. He also said that the other medication option is so similar to the methimazole that I'd probably have the same reaction.

Are these really my only options? Can't I try the meds again on a lower dosage?


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## antn (Nov 4, 2010)

I forgot to add that I have Graves disease. I have some bulging in the eye, double vision and light sensitivity, however the eye specialist said no action, besides glasses, need to be taken at this point.


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## JPGreco (Mar 2, 2012)

Sorry, but you and I are the same. I have Grave's and I'm allergic to Methimazole (technically the brand name Tapazole). There are only 2(3) hyper thyroid medications. Methimazole (tapazole and a generic) and PTU (propylthiouracil). The problem is the generic and the brand name are nearly identical and the PTU is so similar you have a 50/50 chance of being allergic to it. PTU can also be dangerous as it is more likely than methimazole to cause liver damage, so neither medication is suggested for long term use (though some have been on one or the other for years).

Since medication is no longer an option, you have two choices, surgery or RAI.

I had RAI 3 weeks ago and so far so good. I also have an apparent very severe case of grave's based on my labs. Personally I would have preferred surgery over RAI, but I don't have insurance.

The reason I would have preferred surgery is it is faster. After surgery you can be on hormone replacement meds almost immediately and its way easier to balance your medication since you no longer have a thyroid adding hormone to the mix.
RAI is a slow process. It took 3 weeks just for it to start really working and it may take 3 months before I start going down. Then I have to try to balance meds while my thyroid is continually changing. Also, in the long term, my thyroid may start to recover so I will go hyper again. But again, that's just my opinion on me, but life didn't work out that way so far.


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## Andros (Aug 26, 2009)

antn said:


> I forgot to add that I have Graves disease. I have some bulging in the eye, double vision and light sensitivity, however the eye specialist said no action, besides glasses, need to be taken at this point.


I quit messing around and went for the gold. Had the thyroid fried. I have absolutely no regrets! Except, I would have preferred surgery. At the time, I had no choice.

Are you seeing a Board Certified Ophthalmologist?


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## antn (Nov 4, 2010)

Andros said:


> I quit messing around and went for the gold. Had the thyroid fried. I have absolutely no regrets! Except, I would have preferred surgery. At the time, I had no choice.
> 
> Are you seeing a Board Certified Ophthalmologist?


Yes, I'm seeing a Board Certified Ophthalmologist. I saw him 2 days ago. He measured my eyes and examined them and said the muscles were not swollen and some other medical terms I don't remember. But basically they were fine with just minor bulging and double vision. I already wore glasses so after the Ophthalmologist saw me the regular Optometrist came in and did a regular vision exam. I ordered a new pair of eyeglasses this one with transition lenses so hopefully that with help with my sunlight sensitivity.

The endo recommended RAI he did not go into much about the surgery option so I figured that meant RAI was the more preferable route with surgery being the last resort. But now it seems that most people prefer surgery.


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## antn (Nov 4, 2010)

JPGreco said:


> Sorry, but you and I are the same. I have Grave's and I'm allergic to Methimazole (technically the brand name Tapazole). There are only 2(3) hyper thyroid medications. Methimazole (tapazole and a generic) and PTU (propylthiouracil). The problem is the generic and the brand name are nearly identical and the PTU is so similar you have a 50/50 chance of being allergic to it. PTU can also be dangerous as it is more likely than methimazole to cause liver damage, so neither medication is suggested for long term use (though some have been on one or the other for years).
> 
> Since medication is no longer an option, you have two choices, surgery or RAI.
> 
> ...


Thank you for responding. You have given me more info on the difference between RAI and surgery than my endo. Based on you comment it sounds like my levels would be easier to manage post surgery. I will call the endo and more thoroughly discuss my options. They have scheduled my RAI for 7/25.


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## JPGreco (Mar 2, 2012)

From my understanding its not that its easier to balance meds as long as enough RAI is administered to fry to whole or most of the thyroid.

The real difference is how quickly it all happens. I'm almost 4 weeks into the RAI now and I still have at least a couple of months before I'm euthyroid or hypothyroid. If I had surgery, I'd already be on my replacement meds.

Good luck with it and since I'll be about two months ahead of you for RAI, feel free to ask me anything. I mean, experiences vary, but at least I can tell you what happened to me.


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## polly (Oct 29, 2010)

antn - Someone else may have mentioned this but per what I researched when first being diagnosed with Graves and per my Endo and Surgeon, surgery is the best way to go when there is eye involvement. RAI can make the eyes worse. The RAI wasn't an option I would even consider for myself.

I had Total thyroid surgery on 3/5/12 and am doing great. No problems with surgery or recovery. A small cancer was also found (was not expecting this) but was cured with the surgery. Also thyroid tissue can grow back so in my personal opinion I feel a TT is the way to go.

Whatever your decision, I wish you well : )


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