Viewing 15 posts - 1 through 15 (of 23 total)
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  • Suze
    Post count: 24

    Hi. I recently posted questions in advance of having a thyroidectomy and got some great responses. However, something just came up and I would appreciate if anyone has any information about this. Time is of the essence.

    I have had graves disease since 2007, a goiter, and thyroid eye disease and have scheduled a thyroidectomy on Oct. 26. I am on an insurance plan that expires at the end of the month so there is a strong financial incentive to do the surgery now.

    Someone recommended that before doing surgery I look into holistic /naturopathic /homeopathic options to cover all bases (I haven’t been able to stabilize to well recently on methimazole). Lo and behold, the first thing I googled talked about diet sensitivities causing autoimmune responses, and it specifically mentioned gluten and dairy). My sister and brother both underwent nutritional treatment for conditions and both found out they had gluten and dairy sensitivities. My sister underwent a special diet, and she learned that by avoiding gluten and dairy she was able to “cure” or perhaps control some long standing IBS symptoms. Now I am wondering whether to abandon the surgery in favor of going on a special “anti-inflammatory diet”. It may have a large implication on cost and/or surgeon should I opt to postpone the thyroidectomy for the future. However, since I don’t relish the idea of removing my thyroid, I am wondering whether this could be at the root of my problems.

    Please let me know if you personally have ever known anyone (including yourself) that had successful results with Graves Disease through diet or some form of holistic treatment. I would be interested to hear about it, what the treatment was, and if you know what the outcome was. Endocrinologists have told me that it is unlikely that my goiter would reduce much in size, but a contact that I have in the nutritional space said that it is possible. I am particularly interested in cases where people have had Graves for a while, but any information at all would be welcome. Thanks if you can help.

    Suze

    Liz1967
    Post count: 305

    My biggest mistake was wasting time with gluten free, dairy free, supplements, anti inflammatory pills and diets etc. at the beginning. I know of no good research indicating any of these things are going to fix your Graves disease. I think we all hope for some miracle cure that medicine is unaware of. The symptoms of this disease can wax and wane and if you happen to try some diet or supplement right at the time it wanes, you might make the mistake of believing your “cure” is working. As I said, I wasted six months messing around. If I had a do over, I would have the thyroidectomy at three months, as soon as my FT 4 was low enough, instead of six months. People with autoimmune disease often have more than one, so it would not be uncommon to have Graves and allergies or celiac or lupus, but getting allergy shots, for example, does not mean your Graves is then going to go away. Go with the science based research.

    Suze
    Post count: 24

    Liz,

    You are once again coming to my rescue. This is extremely helpful. I am scheduled to speak to a nutrition dr. either tomorrow or Monday, and, of course, he is likely to give me the other side of it. I am soooo glad to have this perspective. I’ll check back and let you know what happens. I did not even know where to go for information on this. A big thank you.

    Suze

    emmtee
    Post count: 148

    There are definitely some autoimmune diseases that can be improved by following special diets, but I don’t believe that Graves’ is one of them. I do recall reading something about selenium supplementation, but I think it was a study done in a community where people are deficient (not a problem in the U.S.) I’ve also read something about Vitamin D deficiencies possibly contributing to the triggering of Graves’ disease, but once you develop Graves’, supplementation doesn’t cure it. (It’s a good idea to have your D tested, in any case. They will likely test yours before your surgery. I was deficient).

    I’m actually acquainted with someone who has lots of food sensitivities and was unable to take methimazole. She was seeing a nutritionist, but she still needed a thyroidectomy.

    emmtee
    Post count: 148

    I think Kimberly is at a conference in Chicago right now (according to facebook, anyway), and since time is of the essence, I’ll go ahead and post this link to the Treatment Options page here on the GDATF website. http://gdatf.org/about/about-graves-disease/treatment-options/ It specifically mentions that there’s no natural cure or foods that will cure this disease.

    Suze
    Post count: 24

    Thank you for the link. I have to say, I just spoke with a doctor that specializes in nutritional counseling. He was VERY convincing. He talked to the underlying cause of the disease vs. removing the symptom, something which traditional doctors have been unable to do. This doctor is not a quack because he was personally recommended by someone I trust. He thought that there was a very high chance of treatment success and said that he has had a lot of success with his thyroid patients (the second such doctor to tell me this and the other one is a relative). I have separately been reading about toxins in the environment that have an impact on health, and thyroid disruption is always on the list. This doctor spoke to reducing toxins and food allergens that cause inflammation. I guess the prevailing issue is that this has never really been studied by traditional medicine, no clinicals have been done. I realize it would take a lot of time and money to see if he is right, and this is what I am thinking through right now. This is not an easy decision as both sides seem very opinionated.

    Liz1967
    Post count: 305

    Yes, clinical trials have been done. Anti oxidants were shown in one study to hasten achieving euthyroidism in people on methimazole, but not such a great study. Selenium has been studied a lot. Most dietary improvement is in people with deficiencies and again, symptoms improve, not disease. I would ask to see your docs research, what he bases his claims on, as well as talk to his patients. I took selenium, anti oxidants like quercetin, resveratrol, vitamins A, D, C, gluten free all natural diet, dairy free, anti inflammatory diet and read a book by a lab technician who has never herself treated a patient. I got to watch my eyes go from irritated to bulging and double vision and optic neuropathy. I felt crummy and went from hyper to hypo on methimazole. If these alternative therapies worked well, you can believe some drug company would sell it for big bucks, like they do with the prescription fish oil for hypercholesterolemia. I don’t blame you for trying, I think everyone does. It upsets me to see people on methimazole for ten years taking handfuls of supplements and on diets so restrictive they actually need the supplements just to get minimum daily requirements. Everyone should do what they feel is best for themselves so best of luck with whatever course you choose. This is a frightening and difficult disease.

    SueAndHerZoo
    Post count: 439

    Been there – done that. When I was diagnosed with Graves I was on Methimazole but was constantly on the search for another way to control the disease and improve symptoms. I made an appointment with my nutritionist (who had saved me and my kids from some very serious stuff many times over the years) to see what he could do. After examining me, looking over my medical records, and talking with me, he honestly and flat out told me that even though there are lots of things that can be improved or cured by holistic, natural, homeopathic methods, he was certain there was nothing that could be done about Graves Disease…. he suggested surgery. If you’ve been to any nutritionists or holistic healers you KNOW how much they hate suggesting surgery, but I had a 20 year history with him and he had always been honest with me.

    I totally understand you researching and studying all you can before doing something final like surgery – I did, too. Good for you for looking at all your options, but I really think your only choices are surgery or methimazole.

    Good luck, whatever you decide.
    Sue

    Suze
    Post count: 24

    Liz/Sue,

    You cannot imagine how much these responses are appreciated. Where I have been netting out is that it would take too long to even see if I would get a response, and I doubt that my goiter would really go away. However, it has been gnawing at me that it is something that I might have tried, and I didn’t even know how to evaluate it. Hearing your stories, that you actually tried these things, makes me feel much more confident in the need to go through with the surgery. I will sleep so much better between now and next Wednesday. Thank your for sharing your knowledge, stories, and experience. Really.

    Suze

    Kimberly
    Online Facilitator
    Post count: 4262

    Huge thanks to Liz1967, emmtee, and Sue for providing excellent info while I was working an event out of town.

    Although some patients assume that “natural” or “alternative” therapies are risk-free, this is not the case. If an unproven therapy fails to adequately control hyperthyroidism, there is a *significant* risk of bone/muscle wasting, heart problems, and a potentially fatal complication called thyroid storm.

    For those who are interested, the National Center for Complementary & Integrative Health has a nice web site that looks at alternative therapies from a science-based perspective: https://nccih.nih.gov/

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

    SueAndHerZoo
    Post count: 439

    Glad I could help.
    Sue

    snelsen
    Post count: 1909

    You have had some great responses, and I echo them. If your concern is still about inflammatory issues,t hat are resolved by diet, I suggest you have a couple labs (ask you doc) that represent inflammation. Nothing wrong with nutrition health people, and there are all kinds. But most likely not MD’s.
    Seems like you have had so many good comments, that I am moving forward to a couple things I learned having my thyroidectomy.

    1. Really nice to have help for at least a week, preferably two. It is not that you can’d “do” most things for yourself, but the extra stuff, that we all have to do, is hard, cause there is a surprising amount of fatigue after a general anesthetic. The things that made all the difference in the world to me:

    other people doing”

    -laundry-anything about it, including putting away clothes and linens, making beds
    -grocery shopping, getting anything that sounds good to you, followed by them
    thinking of meals, then preparing them
    -you will feel good enough to go for short walks outside if your weather permits it.
    -I had very little pain, mostly a sore neck, and sore shoulder muscles. That is partly from he position on the operating table, not moving. Our bodies really like to move!
    -I covered my neck really well, took showers, made a world of wonderful to me.
    I just used saran wrap, and taped it around the area. The best tape int he world that never hurts AT ALL is called Mepitac, and you can order it online. It is so wonderful that I can tape my eyes closed with it, over lids and lashes, and it removes easily in the morning.
    -child care, help with them, for sure. Someone can bring them to you to read a story if it does not bother your voice..but it might for a week or so, you may feel little strained and hoarse.
    -i used cold packs, but not much (I am always cold!) If you use them, and have a bottom freezer, have other people bend over, get them bring them to you.
    -got sick of the bed really fast,and came to kitchen or living room where action was and I could see people. But nice to hid now and then, too. AS I recall, I was in the hospital three days, it might be shorter now. But you are better off at home, anyway.

    Suze
    Post count: 24

    Kimberly and SNelson,

    Thanks for the comments and advice. Kimberly, I really like that website and the link you supplied. I didn’t see anything on Graves or Hyperthyroidism but saw some other things of interest. Maybe I was looking in the wrong place, but I am kind of glad because I am moving ahead with the surgery and don’t want anything to make me question that choice at this point. It just seems like something I need to do for my health as much as would prefer to avoid it.

    SNelson, thanks for the great tips. It is helpful to move on from thinking about the surgery to thinking post surgery. The advice was much appreciated.

    Again to all who have been supplying great information and support, thank you. My surgery is one week from today (the 26th).

    Suze

    Liz1967
    Post count: 305

    My thyroidectomy experience was a bit different than Shirley’s. I had surgery at 11, out of OR by 12:30, home by 4. Sleepy next two days, out at the mall for shopping and lunch the third day. No sore throat or hoarseness, scar just had glue on it. Hope it is as quick and easy for you.

    SueAndHerZoo
    Post count: 439

    My surgery didn’t start till about 4:30 in the afternoon, I believe I was in the recovery room from 8:00 to 9:00 p.m., then into my hospital room for snacks and beverages. The next morning I ate a big breakfast and was released from the hospital at noon.

    I was functional and out and about within 2 days but it was nice to have the time off from work so that I could nap or lie down intermittently throughout the day as needed. Pain was never an issue – I never used the pain meds they sent me home with and took Tylenol only the first 24 hours after surgery. Truly, and this may sound stupid, but it was kind of like a vacation for me. Time off from work, people doing things for me, no one expecting me to be up to doing anything, etc. :)
    Sue

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