[snelsen]

#1063323

Nice! Really nice! What an excellent post. Thank you for taking the time to share your knowledge and experience. It is relevant and helpful. I especially liked your comment about alternative medicine, its’ history and "proven effectiveness." it bears repeating. So here it is again.

"With respect to Ewenme’s comment about acupuncture… it must be remembered that "alternative" medical treatments are only alternative HERE. These treatments (acupuncture, Ayurvedic, homepathy, etc.) have been in existence for centuries, even millenia, in other countries and have always been highly individualized. So the "proven effectiveness" theory doesn’t really hold water for a number of these treatments since it is impossible to apply research study standards to patient-specific therapies. Incidentally, the biomedical engineering and pharmaceutical fields are facing that same dilemma as more and more of our cutting-edge therapies have improved by becoming patient-specific."

Re eyes! I am not checking all your posts before I send this, but wanted to say I sure do understand! Mine are dribbling tears on the keyboard right now. The photophobia, diplopia and excessive tearing are very stressful to experience. As you note below, I have had two surgeries, will be exploring eyelid surgery, including a complex lower lid procedure with a skin graft from the soft palate. I have a lot of reservations about the graft.
Shirley

[HonestBabe]

#1063324

I’m really glad to learn this info about diet and going vegan. I want to post some information about my recent experience with alternative remedies. Let me first be clear: my diagnosis is hyPERthyroidism due to toxic nodules; at this time my test for Graves Disease/autoimmune diseases was negative. In October, I consulted with a Naturopathic Doctor and she put me on a thyroid support supplement called "Thytrophin PMG" by Standard Process, and a herbal formula by WiseWoman "Thyroid II" for hyperthyroid (bugleweed, motherwort, lemon balm, night blooming cereus, passion flower, lavender oil). Six weeks later, my recent TSH blood test showed a minor decrease from .03 to .02. Just 1/100th of a point. (You need to know that the previous 9 weeks test show a TSH decrease from .09 to .03.) So, one could say (and my Endo did) that this recent very small TSH decrease appears to be an improvement. I did not lose any more weight either, so clearly by body is changing to some degree. But I don’t know if this supplement/herbals will actually get my TSH levels up. So, in my exploration of alternative medicine, I decided to add acupuncture to my regimen. He’s an M.D. and tells me that his treatments of hyper patients has been quite successful. He’s got me on Chinese herbs as well. I post this to document information only. I will update further results at the end of my acupuncture /Chinese herbals treatments in 8 to 10 weeks. I hope there is no harm in letting people on this site know my experience. We all need to proceed with caution with Western and/or Eastern medical treatments. HonestBabe.

[Kimberly]

#1063325

Hello – Obviously, I can’t make the decision for you…I can just stress that remaining hypER for an extended period of time can cause bone/muscle wasting, heart issues, and thyroid storm. If you are going to pursue an alternative path, I would at least get frequent testing to make sure you are getting *results*.

I would also encourage you to have your Free T3 and Free T4 tested to see if those values are getting *worse* over time, since FT3 and FT4 represent the actual levels of thyroid hormone in your body. Your TSH is so close to zero that I’m not sure you can really read anything into such small movements.

Best of luck!

[Bobbi]

#1063326

I am haunted by a young woman I met long ago at a NGDF conference. She was skeletal, had grey-toned skin, and lank hair. She had experimented with treatments based on anecdotal statements like the ones HonestBabe would like us to accept. They don’t work. I don’t know what her life was like after she got proper treatment, but I do know that she had seriously wrecked her health by equating anecdotal statements online with PROVEN treatment options.

I am also haunted by a lovely lady named Ann who wrote to me over the years. By the time she was diagnosed with Graves, her heart had been severely damaged. If she were still alive today, I bet she’d write here and tell people not to mess around with unproven alternatives based on the anecdotal comments of one or two people.

In the many, many centuries when "alternative" treatment options were the only available treatment for Graves, people died. Yes, diet and herbs have been on the table of treatment options for a long, long time. And when they were the only things going, a lot of people died. Much of the data I found when I was researching my treatment options suggested that about 50% of Graves patients died when so called "natural" methods were the only option. And, based on Ann, and the young woman I met at that conference long ago, I question the quality of life that those 18th century folks had who did survive.

Today, we can and do thrive. Do NOT equate unproven, untested treatment options with those that have been demonstrated — on tens of thousands of people — to work.

[HonestBabe]

#1063327

Thanks to Bobbi and Kimberly. Just so you know, I am protecting myself: My T3 and T4 are within normal range and always have been normal; I take a beta blocker daily to protect my heart; I eat whole food calcium every day and am very careful about diet; I take magnesium, Vit D and K. I’m proceeding with acupuncture and Chinese herbs. My Endo is very good and working WITH me on this regimen for the next 8 weeks when I will test again. Western and Eastern or natural treatments do not have to be opponents; it’s not either/or. They can support each other with safe and effective results. But I can’t absolutely prove it to you in terms of clinical Western medicine, although there are plenty of medical journal articles on the benefits of alternative methods now, including herbals and acupuncture.

Bobbi, your post about your friends … this sounds like a scare tactic to me, although I’m sure you have everyone’s best interests at heart here. Who really knows the medical details of your friends’ situations? What would you have me say, Bobbi … "OMG, look what happened to Bobbi’s friends. I better rush to my Endo and get traditional treatment right away." That would be making a major decision from a very narrow perspective: fear. I’ve often found that fear can be a misdirection because it’s so highly emotional. We need facts, accurate information and calm clear-headedness. My Endo did NOT dismiss my 1/100 of a point decrease after using herbs and supplements, especially in view of the previous weeks where my TSH level dropped from .09 to .03 when I wasn’t taking anything. So, yes, this is a test for a short period of time. Some of us are willing to go this distance. I want a cure with no side effects. Maybe Western traditional medicine will ultimately be my answer. Maybe a combination of East and West will be my answer. I don’t know yet. But please, wish me well on this journey. HonestBabe.

[snelsen]

#1063328

Hi, I posted a response, but it seems to have gone into the ether. It just disappeared.
Wanted to clarify that TSH levels that are low, indicate hyperthyroidism. So goal is to increase the number. The general range is close to 0.4-4, depending on the lab. So you are working to increase the TSH, correct?

[Kimberly]

#1063329

HonestBabe wrote:I am protecting myself: My T3 and T4 are within normal range and always have been normal; I take a beta blocker daily to protect my heart;

Hello – I think you would have received different responses from the facilitators had we known that your T3 and T4 are normal! When you say "hyperthyroid", this is usually associated with elevated levels of actual thyroid hormone. This is what is so dangerous and needs to be controlled ASAP. Quite frankly, we all get very nervous when someone tells us they are hypERthyroid and not using conventional medical treatment!

The term "subclinical hyperthyroidism" is often used for situations where TSH is low, and yet T3 and T4 are normal. Although I have heard of Anti-Thyroid Drugs being used in some cases of subclinical hyperthyroidism, doctors will most often use a "wait and see" approach — and then begin treatment if/when your levels of T3 and T4 start to exceed the "normal" range.

One question…did you doc give you a reason for taking the Beta Blocker? This is most often used in patients who are experiencing an elevated heart rate; I’m not familiar with it being used as a preventative measure.

[HonestBabe]

#1063330

For Snelsen, thanks for your comment. Yes the goal is to raise the TSH levels. And for Kimberly, in November test my FreeT4 was .79 (within normal range of .71-1.85) and Free T3 was 335 (within normal range of 230-420). Both of these dropped slightly since mid October test, but I was ALWAYS, since May, within normal T3 and T4 ranges. My hyperthyroidism is due to the toxic nodules. I’m told by two Endos that these nodules can shrink. And if they do, my TSH levels should improve. At Columbia Univer Medical Center, Dept of Surgery, they claim on their Web site that "one third to one half of all thyroid nodules shrink spontaneously without medication." They don’t really know for sure why some nodules shrink and others do not. Kimberly, I’m on a beta blocker because of mild palpitations that occur once in a while. No racing heart. I check my pulse during any palps and I’m usually 83 to 85 bpm, which is normal. Ocassionally I’ll hit 86 or 87 but never over 100 which would be racing. Please understand, I’m not promoting anything here and certainly would never suggest to anyone to go alternative vs. traditional medicine. I’m just sharing my experience. I’m under the direct care of an excellent Endo and being treated by an outstanding M.D. who is doing the electro-acupuncture/chinese herbs. Thanks to all. HonestBabe

[saumya]

#1063331

Shirley,

Thanks! I’m glad to know my comments were so well received. ” title=”Smile” /> As to the eyes, deciding on a graft is pretty tricky. Good luck either way! I haven’t had any surgeries yet – my ophthalmologist has no idea why I keep developing new symptoms. So I’ve gotta wait for everything to settle down first. Its so weird, the diplopia comes and goes (though the photosensitivity is perpetual!).

Take care and happy holidays!

[snelsen]

#1063332

Well, your eyes are changing every 5 minutes because you are in the hot phase! Pretty soon, the measurements will be more consistent, and you will notice less variation from day to day. Deciding when you are in the cold phase, is pretty much dependent on those two variables, the objective measurements, and what you are experiencing. The very frustrating thing form me, was much concern about making a mistake when the hot phase was over, and basing further surgeries on eyes that still might be changing. So I wanted to wait a long time, even though I was so anxious to have the strabismus surgery, hoping to have less double vision. And it DID work! If you know anyone who has had the graft for lower eyelids, tell them to write!

[san70]

#1063333

Honestbabe…. I have the same problem you do (hot nodules causing clinical hyperthyroidism). Have you had any luck with natural/alternative treatments? thanks.

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