[Ewenme]

#1065365

Hello!
I am relatively new to Graves–since March, and am on ATD’s (Methamizole) hoping to attain remission. Am doing pretty good–feeling almost normal again. I am scheduled for a check up tomorrow.
I’m certainly no expert, but from everything I have read, there really is no way to control the errant antibodies that cause our symptoms. If someone knew how to do that, all those with auto immune diseases—Rheumatoid arthritis, lupus, Graves, and maybe more I don’t know about—would have great reason to rejoice, because therein lies the cure.
I would be very suspiscious of anyone who claims to have that knowledge or a so called holistic means to achieve control over antibodies that cause auto immune diseases. Best thing to do is follow your endocrinologist’s advice and the traditional treatments that have been proven to give relief of symptoms Also keep supporting organizations that are working to find a cure (such as the Grave’s disease foundation).
Best wishes and good luck!

[Ski]

#1065366

Well, the underlying autoimmunity is truly our holy grail ~ as it is for all autoimmune conditions. They’ve tracked back some of the mechanisms that occur before autoimmunity results, but the fact is that the science to get us there will not help those of us that have already contracted an autoimmune condition. Once the real answers are achieved, they MAY be able to address patients with a high likelihood of having some autoimmune condition so that the last piece of the puzzle never falls into place and they do not manufacture the damaging autoantibodies. Those of us who have begun to manufacture the autoantibodies and have become ill as a result have a different problem entirely, and the only way to get rid of those is to compromise the entire immune system, so we’re kind of stuck with the situation of dealing with damage control, symptom control. There is some evidence that the antibodies CAN lessen over time, for some. There is also increase/decrease of antibodies that happens for no specific reason scientists have been able to identify to date, so we have a lack of control over that, to some degree. Stress can activate the immune system, so that elevates antibody levels overall, and of course that includes the autoantibodies, so stress levels (or, more accurately, our response to stress) can affect the severity of our symptoms. Certainly, keeping your body healthy overall cannot hurt as you are going through any disease state, so that is a wonderful course to pursue, but don’t fool yourself into thinking it can reverse your condition or control your thyroid hormone levels overall. It may make the path easier, so feel free to explore, but do let your doctors know about anything else you are pursuing in the course of your treatment. There can be a change in your body’s reaction to meds or interactions with supplements you take, so it’s always best to keep everyone informed, all around. Talk with your pharmacist if you have questions about supplements, they have a great deal of information on that.

[djones]

#1018509

Hi – am new here on the board. It’s wonderful to connect with others coping with this incredibly disruptive disease.

Some background. Have had GD since 2007 and am currently on PTU (100mg 2x day) and Toprol. We’re increasing the PTU (up to 100mg 3xday) because I keep getting more hyper. I’m also taking vitamins and herbs to support the liver and different organ systems stressed by too much thyroid hormone. I’m doing WAY better than I was, but still have major issues. One is a multi-nodule goiter which last year looked to be cancerous, but that was ruled out through CT scan and biopsy. My doctor said he’d seen larger thyroids but mine is much enlarged. I’m considering a thyroidectomy, but REALLY don’t want to go under the knife. RAI sounds like a one-way ticket to hell, and I’ve already been there when I survived a thyroid storm last year and almost died.

My question is about how to reprogram (not sure that’s the right word) the immune system so that it stops attacking the thyroid. Surgery takes care of the thyroid issues, but doesn’t address the underlying problem of a malfunctioning immune system. I have a friend with Hashimoto’s who has it completely controlled by following a raw vegan diet. I’ve read other accounts of autoimmune diseases vanishing when people made radical changes in their diets and lifestyles. What have any of you tried with any measure of success? Eating a raw vegan diet will be one of the last things I try, simply because I know myself well enough to realize that I’ve got a 0.00% chance of staying on it.

Thanks for all the great information provided.

[djones]

#1065367

Stress is the thing that I originally believed triggered GD, so what you say makes sense about controlling the reaction to stress as a way to help out the immune system. I’ve put off starting a meditation practice for years now – perhaps it’s time to begin. I’ve read that it does wonders for alleviating the affects of stress on the body.

I am under no illusion that ANY supplement will cure me – they are only to help me feel better and keep the rest of the body as healthy as possible. Fortunately, my doctor is the one who recommended them and knows how they all work together. I too am hoping for remission, but my thyroid levels have been going in the opposite direction lately, so the search for treatment and symptom control options continues. Sure hope I feel better when the higher dose of PTU kicks in. I am SO very tired of getting better, then worse, then better, then worse – and not being able to live a full life. And on top of all that – I think TED is starting up and I keep gaining weight. So much for vanity! lol

[Ewenme]

#1065368

You are both right in saying there’s a connection between stress and illness. So indirectly we can control our immune system by managing our stress. Hadn’t thought of that. And there’s certainly no harm in taking some good supplements to boost our immune systems, either. I started taking some good vitamins after my diagnosis for that reason.
This is a disease that takes time to control, which is so difficult. I hope everything works out for you and that you feel well again soon.
JS

[Ski]

#1065369

Remember, "boosting" the immune system is "boosting" the autoantibodies, so that specific action can be a problem. For instance, I like to use echinacea when I feel a bad cold coming on, but I have to take it about half "regular" strength because it tends to increase the slight eye symptoms I have.

[Kimberly]

#1065370

Also – A quick note on Vitamins…those of us who are on anti-thyroid drugs need to look for a multivitamin that does not contain iodine, as this will reduce the effectiveness of our meds. Our thyroid glands will gobble up the iodine and turn it into *extra* thyroid hormone…which is the last thing that we need!

[Corinne]

#1065371

Do you know of any chewable vitamins that do not contain iodine?! I am having a hard time finding some. I can’t take the swallowable ones, they make me really really sick. I just noticed the other day the ones I am taking do have iodine in them, and was wondering if i should switch….

[Kimberly]

#1065372

Hi Corinne – If your levels are stable, you might just make a quick call to your doctor’s office to see whether you should change up your vitamin routine. I think this is a bigger concern for new patients who are still trying to get their hyperthyroidism under control. In that situation, adding that extra iodine is like throwing gasoline on a fire!

I actually take a multi that comes in a capsule, then I break open the capsule and mix the vitamin with juice. (You can also do this in a blender). I also have to take it with a bit of food, or I find that it upsets my stomach. I’m not thrilled with my multi, as it has a ridiculous % over the recommended RDA of certain nutrients. If you do find a better option, definitely check back and let us know!

[djones]

#1065373

Here are 2 vitamins that don’t have iodine (there are others, but they are hard to find). The first one is a whole food vitamin (which I take), and the second is a chewable.

http://www.luckyvitamin.com/p-23404-cou … 90-tablets

http://www.countrylifevitamins.com/more … uct_ID=112

[PAT1953]

#1065374

To Kimberly or Ski. I was wondering after you have RAI do you still have to be careful about iodine, since supposedly the Thyroid isn’t functioning like it once was? My fish oil supplements have iodine in them. Thanks.

[Ski]

#1065375

If your thyroid does not function, then no, you don’t need to worry about intake of iodine. If you are still pretty early on in the process and are not certain that your thyroid has been completely destroyed, then you might want to keep a lid on things like seaweed. I don’t know how much iodine may be in your supplements, but you could talk with your doctor or pharmacist to find out if it seems like enough to affect you badly. If your levels are managed at present, and you are feeling well and labs are stable within the normal lab ranges, then you shouldn’t worry about it at all, really ~ even if it’s having some effect, whatever you’re doing is accounting for it, if everything else is well.

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