[nbark]

#1060305

I was told by the eye doctor that my eye would never go down. I decided to go the vitamin/herbal route. I started taking Inositol and Choline 500 mg a day and kelp, which is iodine and what the thyroid lives on, according to the doctor. My eye is now normal. There is still pressure back there but I can feel the pressure if I don’t take the Inositol and Choline every day. I proved this to my Graves disease eye specialist by not taking my Inositol and choline for five days before seeing her and the pressure in my eye had increased from 14 to 24. I could feel it and you could see it. I went back on the inositol and choline and my eye pressure is now back to 14-16 at every visit. The doctor was totally impressed with this but said there weren’t enough “studies”…Ok…walking proof…but what can you do. They have also come out with a factoid that Iodine was taken out of the food processing industry and replaced with bromine, which is why there is supposedly an increase in thyroid problems not only in humans but animals too. Capsulated kelp has helped my horse come off of L-thyroxine and she has had normal thyroid function tests. So there must be something to this. My thyroid was killed with radioactive iodine, but if I had known all of this, I would have gone a different route. I now take Armour thyroid, which is pig thyroid and feel much better on this than the synthetic products. The synthetics seemed to cause a big increase in my appetite and an actual obsession with food. It took about three months off the synthetic for that to wear off and I now have a normal diet. I mean everything tasted fabulous. They should use that stuff for people who don’t eat enough.

[Kimberly]

#1181847

Hello – I’m glad that you found some relief, but I would recommend that others consult with their doctors before trying this approach – and use *extreme* caution with iodine supplementation.

For patients who are trying to control hyperthyroidism, taking extra iodine is like throwing gasoline on a fire. This can both reduce the effects of your medications and increase the severity of symptoms. And researchers believe that being either hyper *or* hypo can increase the risk of severe TED complications.

[npatterson]

#1181848

I totally agree with Kimberly. “herbs” are the same things as medicines. They change and alter many things in our bodies, as well as change the way some medications act. BE CAREFUL.

When you talk about pressure, I assume you are talking about the intraocular pressures they measure when Glaucoma is suspected. Because of your fluctuating pressures, you need to continue to have that checked on a regular basis, for while it is not actually related to Graves’ eye disease, it is something that can cause blindness.

Take care,

[npatterson]

#1181849

I totally agree with Kimberly. “herbs” are the same things as medicines. They change and alter many things in our bodies, as well as change the way some medications act. BE CAREFUL.

When you talk about pressure, I assume you are talking about the intraocular pressures they measure when Glaucoma is suspected. Because of your fluctuating pressures, you need to continue to have that checked on a regular basis, for while it is not actually related to Graves’ eye disease, it is something that can cause blindness.

Take care,

[Raspberry]

#1181850

Thanks for sharing nbark! I think there’s value in knowing what alternative treatments may hold promise. I started taking 200mcg of selenium a day based on studies that it might moderate TED long before my endocrinologist told me too, now she’s behind it. My ophthalmologist tells me to take flax or fish oil to help with conjunctival inflammation that I’ve had. It’s great if we can take the best of both worlds if we can.

[snelsen]

#1181851

Yep. Good conversation,good points. I’d give serious consideration to the conversations by npatterson and Kimberly. AND, IOP, or increased ocular pressure, or “eye pressure” is a different subject, and a clinical symptom and diagnostic sign of glaucoma. I do hope you continue to have your IOP tested now and then. Unrelated to Graves’. Important to know.

Regarding supplements. Herbs ARE the same thing as medicines and drugs, but in the USA, they are products sold as dietary supplements. That means there is no oversight or quality control at all. So the components of the pills may vary from bottle to bottle, company to company. The companies making them are not required to prove to the FDA, or anyone else, that they are safe or effective, as long as they do not claim the supplements that they are safe, effective, can prevent, treat or cure any specific disease. So less is known about them ,their interactions with other drugs.

I am super happy that you feel well now. hope it continues forever!
Shirley

[nbark]

#1181852

I agree that you should have your eyes checked every year and I do…and the doctors are still amazed at the difference in my eyes and how I don’t have the Graves look in my one eye..oh it still feels as big as an aggie marble but doesn’t look it, which is the pressure staying down. I personally don’t want to see people jumping into radioactive iodine treatments if there is an alternative to “try”. I wish I had had more information before being given PTU and radioactive iodine…but when I was diagnosed Graves wasn’t as “common” as it is now and I’m just not a big fan of popping pills for anything that ails me…and some drugs, even with FDA approval have been pulled because of side effects and worse…so even with the FDA stamp of approval…not all medications are safe either…its a personal decision for everyone to go either way…..medications or vitamins or a combination of both…as I do…

[snelsen]

#1181853

Hi nbark,
I totally get it! Good summary.
Shirley

[Raspberry]

#1181854

Shirley and all, I made a point to mention that my endocrinologist (selenium) and ophthalmologist (fish and flax oil) both were recommending supplements since this is a medically conservative board. There are in fact studies showing real benefit particularly for the selenium with TED and Omega-3’s for inflammation in general. While the FDA does not regulate supplements, it is possible to do careful research and find reputable brands that do quality testing. Let’s not shut down discussion on supplements especially when a person is taking them under the supervision of an MD with positive results and is sharing it to help others with this infernal disease.

Also FDA approval is hardly a guarantee, see the tens of thousands of deaths from Vioxx. No matter what we take prescription or supplement, we must always be vigilant.

[Kimberly]

#1181855

The GDATF certainly stays on top of published, peer-reviewed research related to alternative treatments. There *is* promising research out there on Selenium and TED, although the best publicized study was done in an area that is known to be Selenium-deficient, so that is an area that needs further research.

For those who are interested in learning about a particular supplement, the National Center for Complementary & Alternative Medicine has a nice web site that looks at alternative therapies from a science-based perspective: http://nccam.nih.gov/

I’m happy for nbark that she has found some relief for TED. However, encouraging Graves’ patients to load up on iodine supplements is *extremely* dangerous. Obviously, we can’t give medical advice here, but my personal take as a Graves’ patient with mild/moderate TED?

Don’t try this at home.

[snelsen]

#1181856

Yes, as Kimberly said, the selenium study was done a selenium deficient part of the world. So the results, at this time, cannot be used as a data point for treatment in this country.

Gotta say that excess iodine supplements for Graves’ and TED can be super dangerous. I would think if this question were brought to a naturopath, homeopathic MD, or providers in allopathic medicine (regular, traditional medicine) the response would be the same.
Shirley

[Kimberly]

#1181857

I meant to mention that I am actually taking 200 mcg of Selenium daily, with my doc’s blessing. I’ve been doing this for over a year, and while my eye symptoms haven’t gotten better, they haven’t gotten worse, either. So it’s kind of hard for me to judge at this point!

[snelsen]

#1181858

Kimberly,
yes, I agree with you! I looked up selenium for someone else, gave them this reference. Informative. Am sure you have seen it.
When I had TED, I asked about it. My docs said, “no evidence, but whatever floats your boat, as long as you don’t take any more than 200mcg.” I take so many darn meds already, that i decided to not do it.
Shirley

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