[JessieC]

#1058882

I know many of you don’t agree with this approach and I’m very aware of the reasons why. However, I was curious to hear from any of you who have had success or failure with a nutrition, exercise and stress reduction approach to treating Graves. I was allergic to methimazole and I am trying to avoid removing a necessary organ. I’m seeing a nutritionist who only treats thyroid disorders. I would also mention that I’m asymptomatic thus far so I have ‘time’ to work this out. Thanks!

[Kimberly]

#1170650

Hello – The Graves’ Disease and Thyroid Foundation does not advocate any treatment options other than conventional therapies, as there are currently no alternative therapies that have been *proven* to be both safe and effective.

Unfortunately, the Foundation and its volunteers have had contact with patients who became much more ill – and even patients who died – because they made the decision to reject conventional treatment. Remaining in a hyperthyroid state is a dangerous situation, as this can cause complications such as bone/muscle wasting, heart problems, and thyroid storm, which has a 20-50% fatality rate.

A few years ago, there was a gentleman who became quite well known for insisting that Graves’ was caused by a specific nutrient deficiency and could be “cured” by correcting this deficiency. His web site is now a “ghost town” — and has not been updated since 2005. Interestingly, I just checked to see if it was still up, and although there is no new information, he has since added a disclaimer stating, “There is no scientific proof that thyroid disease can be corrected nutritionally…what works for one person may be dangerous for another.” Makes you wonder what happened to warrant that disclaimer!

There is actually a division of the National Institutes of Health that is called the National Center for Complementary and Alternative Medicine — and their mission is to look at alternative and complementary therapies from a science-based perspective. Hopefully, one day, we *will* have more concrete information on the effectiveness of alternative and complimentary therapies.

For now, though, we are stuck with the three conventional treatment options for hyperthyroidism (Anti-Thyroid Drugs, Surgery, or RAI) and the risks and benefits that go along with these treatments.

For patients who have mild skin reactions to methimazole, the latest guidance from the American Thyroid Association and Association of Clinical Endocrinologists notes that antihistamines can be used to provide some relief without stopping the drug. Switching to PTU is also an option, although methimazole is the preferred drug, due to its better risk profile with regard to liver issues. However, if you had a *severe* reaction, continuing with the methimazole or switching to PTU is not recommended.

[JessieC]

#1170651

Thanks Kimberly. I am also seeing an endocrinologist who is very supportive of my willingness to try alternative therapies since my heart rate, blood pressure, breathing, etc. are all perfectly normal. I take regular blood tests and am very careful. But thanks for the reminder that I could die! Kidding…obviously.

It appears this isn’t the right forum for me but I appreciate your taking the time to respond.

[keesephoto]

#1170652

I’m going to attempt to continue this discussion but let me explain why first.

-Diagnosed Graves 6 years ago.
-Can’t get health insurance for under $1500 a month.
-I am Cherokee so I have to use the tribal healthcare, which is government healthcare at it’s best. A blessing considering I have no other healthcare options but frustrating at the time it takes to get anything done.
-Treated thyroid with meds only for 6 years and ONLY got worse. My thyroid is trying to die so my levels never remain consistent. One RX will get me in the normal range for about 1-3 months at most..then it changes. During all these changes my body has suffered. GREATLY
-weight gain, TED and all the dizzyness/nautiousness that comes with, Heart Palpitations, back and knee probs, Sleep Apnea, etc etc etc.

Now. I began treatments with the tribe last June. They took me off all meds June 2011 in order to have RAI. FINALLY had an uptake and scan in November, but showed Nodules. Had ultrasound December and just now got results back (this is the frustrating part with the tribal healthcare).

Now, from 3 months ago my thyroid levels have changed, although one goiter has grown (I have several nodules, one goiter). And the levels result in normal range. Therefore I am no longer a candidate for RAI. So, now I go back on the 27th to discuss removal. Dr actual would rather me go back on meds and try to treat this way. After 6 years of meds and it slowly killing me I REALLY don’t want to go that route again.
BUT, to get surgery I have to go back meds, then Beta blockers, and other meds as well. All these will make me gain weight (again) and extremely tired. I feel like if I do this, my family will fall apart. We are barely holding on considering I can hardly do many of the things I would like to now.
Oh yeah, and not to mention that with the time frame it takes to get anything done thru tribal healthcare, it’ll be at least a year before the surgery happens.

I am SCARED. I am in pain. I am dying.

I have no choices left.
Considering all that (and thank you for reading this far if you have), are there any nutritional things I can do? What are my other options? Lay down and die or is there other things I can try?

[Kimberly]

#1170653

Hello and welcome — Keep in mind that the conventional treatments out there (Anti-Thyroid Drugs, Surgery, RAI) don’t cure the autoimmune disease…all they do is control a patient’s hyperthyroidism, which occurs as a result of the immune system’s attack. Patients who have normal thyroid hormone levels (T4, T3 and TSH) are generally not candidates for any of these options. In certain cases, patients with normal T4/T3 and below normal TSH receive treatment — this condition is referred to as “subclinical hyperthyroidism”. Also, if your goiter is getting to the point where your breathing or swallowing is impacted, surgery may be recommended.

I’m not at all familiar with the tribal healthcare system, but there are free and low-cost clinics that are out there and available to patients regardless of insurance status. You can find a listing at:

(Note on links: if you click directly on the following links, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.hrsa.gov/index.html

Would it be possible for you to visit one of these clinics and get a second opinion?

The concern with “alternative” treatments is that there aren’t any that have been *proven* to be both safe and effective. And it sounds like you have a fairly complex case, dealing with goiter as well as nodules. I wish I had some better words of wisdom to share, but all I can do is encourage you to keep fighting until you find a doctor who will help you get the care that you need and deserve.

[keesephoto]

#1170654

Thank you. I will take a look at the list you provided.

The thing is, I will be back to out of normal range in a month at the most. I go from hyper to hypo to hyper to norm. It’s never stable. Considering that I’ve been off all meds for almost a year now you can imagine the havoc it’s wreaking on me and my body (although I must admit for some reason I feel better now than last year ON meds, oddly enough and not by much).

So, next month I could be a candidate for RAI again, however by the time they get to it I might be Hypo instead. GRRRR

[genuinruby]

#1170655

Just wanted to chime in about the nutritional approach. I think that anything we can do for ourselves healthfully is a plus. Good nutrition is essential for us to have the strength needed for the body and mind to cope with this illness. Your effort will not be a loss. You (JessieC) said, that you are asymptomatic, after having a reaction to the methimazole, that happened to me as well. I would get a reprieve from the madness, then bit by bit, because Grave’s is antibody driven, the illness came back. That is my story, someone else might have a different ending for this same senerio, they might stay in remission for years. I hope your story is like that.

[Harpy]

#1170656

Just put up a post re my partner ,
“Finally good numbers after 5+ years of treatment”
As you have probably realised, there is so much more not known about this family of conditions than is actually known about them.
My partner has been on PTU for 5+ years and for the last 3-4 of those she has also been on a comprehensive nutritional and supplement regimen put together by a Naturopath, with approval from the Endo & in addition to that a process of lifestyle and behavioural changes (stress management).
I think the stress factor is probably a primary issue, most people don’t realise stress is rarely external, it is about how we respond to external stimuli and as this is an engrained behaviour, likely from childhood, you really need to dig deep and start unwrapping that onion and learn to respond in more appropriate ways. Just taking yourself out of stressful situations is avoiding the core issue, stress is a symptom, the response is the actual disease. Just like the thyroid condition is merely a symptom of the autoimmune disease.
I needed to say that, because if you are in a healthy state of mind, your body can find nutrition in burgers & pizza, but if not, no amount of whole foods can help you. So if you want to go the multiprong approach to heal yourself, then ensure you incorporate a program that includes stress management(not as simple as you might think), physical exercise, nutrition and in my opinion from what I have read most people would benefit from using ATD’s to get the antibodies under control. Become more familiar with your body,
my partner has been checking pulse & body temp twice daily to keep an eye on her body & I have 3 years of records, apart from possibly warning you of a swing into either Hyper or Hypo, it is a routine stop when you also contemplate how you are actually feeling, she has also kept a symptoms/feelings journal for this same period & also tracking menstral cycle as another indicator, also because body temp does change with the point in the cycle.
All this is a repeated reminder of the goal and helps to keep her focussed, virtually a full time job, but that’s just the way it is, you gotta be serious if you want serious results.

[Author]

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