Friday, August 29, 2008

Grave's Disease

The Picture - Half Empty or Half Full?
Many of you who know me know I've been fighting a battle with Graves' Disease for about a year and a half. It was diagnosed in February of 2007. I was so very sick back then I actually thought I was going to die! One of the main symptoms was a rapid heartbeat and mine was probably 110 beats a minute. I was put on Methimazole, about 40 mg. per day to knock down the worst of the symptoms. That has gradually been reduced until now my dose is 5 mg. a day. Then I got some really bad news this week, my numbers are beginning to rise again. My Dr. called on Wednesday and told me he wanted to do the radioactive iodine treatment. I just don't feel ready for that at all. He gave me until the 7th of November, my next appointment, to "see the numbers change". He says to take the medicine every other day and in two weeks go off it all together. Yeah, the numbers will change and it won't be for the better I'm sure. So, I went on the Internet and found some alternative therapy that I'm going to try for the next couple of months. Mainly just B2 (400 mcg), selenium (200 mcg), flax seed oil 1000 mg), L-Carnitine (2000 mg)) and I MAY try Bugleweed. I don't know if it's going to make any difference but I can't just go to that final place yet. Yeah, I've been reading the pros and cons of other peoples journey having the iodine treatment and the follow-up with replacement Armour Thyroid or Synthroid. If ANY of you have stories to share, advice, want to tell me your thoughts, please feel free to comment. I would love to hear from you!

6 comments:

Anonymous said...

Check out the Graves Disease Foundation conference in Carlsbad in October. They have info at www.ngdf.org. The best docs are there to answer all your questions.

Simon said...

I've avoided the NGDF website ever since I posted a link in their forum to a peer reviewed Endocrine journal. And the message was censored because it was deemed critical of Radio Active-Iodine treatment for Graves.

I'm sorry if they won't accept scientific research because it criticizes their cherished beliefs it is as bad as religious dogma ("the earth moves" - Galileo).

The herbal and alternative treatments are poorly studied and may be less safe than RAI. Although the vitamin and supplements being looked at here are probably safe. Selenium has been shown effective against some forms of autoimmune thyroid disease, and avoiding selenium, deficiency is unlikely to hurt.

But if you want to avoid RAI ablation for longer, the simple answer is to adjust the antithyroid medication.

Long term treatment with antithyroid medication is both safe and effective. I've been on Carbimazole (a drug that is metabolized into methimazole) for about 14 years without ill effects from the medication.

Also there was a paper published this month which discusses how when antithyroid drugs are remove Graves' sufferers often experience hyperthyroid episodes before entering a period of remission. Which makes judging when to restart antithyroid medications even tougher.

Good luck Karen.

Anonymous said...

NGDF had to curtail a lot discussion about RAI because there are many kooks out there using scare tactics and downright false information to mislead people.

The fact is, NGDF is the only patient organization promoting scientific research in all areas of Grave's Disease. The conference in Carlsbad will have the world leader in research on Grave's Disease in addition to the most highly respected ophthalmologists and endocrinologists in the nation. There will be a free flow of information covering the good AND the bad of all treatment options.

As a practical matter, the NGDF website is not an "open forum" (and shouldn't be) where people post whatever they want no matter how off the wall it is. There are plenty of other places for that. NGDF has decided to be the place where the most current thinking from the world's best doctors is discussed.

I'm sure the folks at NGDF feel bad about pulling off posts such as yours that intelligently discuss the merits and drawbacks of RAI. I have been told there are literally thousands of kooky posts about RAI that are very misleading to people. It makes it hard for them to sift through to pull out the intelligent discussion and discard the hysteria.

Simon said...

I'm sorry but they can't have the "most current thinking of the world's best doctors", if they censor articles about recent clinical trials. Since experience shows that is where the world's best medical information comes from.

Yes there is a lot of misinformation about RAI around, but that misinformation is on both sides. I routinely speak with patients who have been told point blank it wasn't the RAI treatment that triggered their eye problems, when the timing makes clear it almost certainly was.

If you can't rely on doctors to tell you honestly about the most immediate downside to RAI ablation (and I suspect it is because many simply don't know about the scale of the risk), I certainly can't recommend people go to forums that deliberately suppress honest discussion of the downsides of RAI, whatever their motives for biasing the discussion.

Anonymous said...

I'm not trying to have a debate with you Simon. What I'm trying to say is issues like RAI's effects on the eye's are discussed ad nauseum at the conference. No one is censored. I know, I have attended more than one and I have NEVER witnessed censoring of questions. You can ask the doctors whatever you like. That's the point of the conference. I'm just trying to share information about a something that has been VERY beneficial to me personally. There aren't many venues at which you can discuss these issues with the doctors that are leading the way in these areas.

Simon said...

Okay so the conference is great, but the online forums are to be avoided if you want honest answers. Sounds plausible.

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