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  • hashimoto's and uticaria

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    Old 04-17-2009, 05:49 AM   #1
    Hashihelp
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    hashimoto's and uticaria

    Trying to find out if anyone out there has Hashimoto's and Chronic Urticaria? This is chronic hives that last for longer than 6 weeks. Antibody level is 400-600. On synthroid, but euthyroid. I have been dealing with ups and downs (hyper to hypo) for months and hive problem since last July.

    Studies are showing only option is Thyroidectomy, complete.

     
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    Old 04-20-2009, 07:09 PM   #2
    elmhar
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    Re: hashimoto's and uticaria

    Mast cells in the skin release histamine in response to thyroid antibodies. I know it sounds weird, but those mast cells are sensitive to the ABs.

    Try a good allergist/immunologist. A couple I know are knowledgeable in this area (which eludes most endos, GPs, IMs). What is most helpful is really surpressing your own thyroid with a higher dose of meds, usually incl a T3 med. When TSH is very supressed, urticaria is much less.

    Of course there is a fine balance between suppressed TSH & frank hyperthyroid/excess thyroid hormone. Most docs won't touch it, but as I said, call around to a few allergist/immunologist types.

    Another biggie to consider is whether you are having a dye reaction, which is a biggie for most of the Synthroid dosages except for the 50 mcg. You can do most any dose by multiples of the dye-free 50's -- again, an AI doc would be good to help sort this out. A dye allergy rxn can come on after a spell of using the dyed dose OK -- then BANG you get hives. IME w/a dye rxn you may get worsened hives an hr or so after taking your Synthroid.

    Best wishes.

    Last edited by elmhar; 04-20-2009 at 07:09 PM.

     
    Old 04-21-2009, 09:23 AM   #3
    Hashihelp
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    Re: hashimoto's and uticaria

    elmhar-
    as far as I have researched- the thyroid antibodies and the urticaria antibodies connect receptors and release histamine. My problem ( I am of aware of chemical sensitivities and am on 50 mg synthroid twice a day) is that I have already been to see 3 allergists, on 360 mg of fexofenadine, had two anaphylactic responses even though on antihistamines, AND have been on synthroid for 6 months. My antibodies number over 500 for both thyroid and urticaria.

    I have been to see a surgeon, one case study says once you take the thryoid out, the antibodies are no longer actively destroying the thyroid, so then the histamine problem is resolved.

    Right now I cannot wear makeup (anything that causes excess histamine, nor can I eat shrimp, tomatoes, spinach, vinegar, etc., foods that produce excess histamine.

    I believe only option at this point is surgery- I went hyper, not symptoms, but numberwise with high T3 and high T4 and 0.0125 TSH. So there isn't much hope for synthroid if I am that kind of number and still having hives.

    Trying to find out if anyone else out there has been able to suppress thyroid or is surgery only option.

    How long does it take to suppress thyroid?

     
    Old 04-21-2009, 10:33 AM   #4
    elmhar
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    HashiHelp --

    You may be right about the surgery. If the anaphylaxis is known to result from the thyroid antibodies, then I would also consider surgery, sooner rather than later, and taking out the entire thyroid (not just a lobectomy). I would see an ENT w/experience in thyroidectomy, rather than a general surgeon. Just MO.

    Your low TSH suggests the sort of suppressed thyroid (w/out hyper symptoms) that is required. Often a T3 med (Cytomel) is used for this purpose (Cytomel) as it is more direct & also because excess T4 in the system has a monkeywrench effect. It can take several weeks of very low TSH to suppress the thyroid.

    A couple other things you might want to research. One is your iodine/selenium status. Is your diet high in iodine (supps, seafood, sea veg, sushi, iodized salt, etc.) -- this can increase T antibodies, esp. when selenium status is low. Low selenium status is very common in the USA due to depleted soils. Sometimes a dietary supplement of Se (selenomethionine recommended over inorganic Se salts) is helpful in reducing T antibodies. However do not go over 200 mcg/day. If you already take a multivite, ck to see what level & type of Se is in it ... perhaps you already get enough Se.

    Another thing you might research is gluten-free lifestyle, which has been shown in a few research studies to help decrease thyroid antibodies. It may be worthwhile considering, researching, etc. however there is a steep learning curve, GF diet is like no other in that it is down to the mg, no cheating, and it includes considerations for beverages, meds, craft supplies, makeup/HABA -- the list goes on & on. It can take up to 6 mos. to totally kick in & perhaps given the severity of your situtation, w/anaphylaxis time is of the essence. I mention these options only as things to consider.

    A final note: do you carry an EPI pen or ANA kit just in case? You really must have this.

    Is your adrenal status OK? Any cortisol testing? Have you been tried on steroids such as prednisone? Perhaps a course of pred would quiet down the reaction, then a weaning off ??

    Best wishes.

    Last edited by elmhar; 04-21-2009 at 10:38 AM.

     
    Old 04-22-2009, 08:43 AM   #5
    Hashihelp
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    Re: hashimoto's and uticaria

    Hi elmhar,

    The anaphylaxis is most certainly from an overabundance of histamine, directly from the antibodies reacting with each other- however, that is a "theory" and there is only one case study proving that a thyroidectomy (complete) would solve the problem. I have found an excellent surgeon, however, they want to give the synthroid "time to work". What is that? 3 months, 6 months, etc.? I am on synthroid only and 100 mg's at that, which is "aggressive" but my endo doesn't want to try anything else because he is trying to get a suppression, not a supplementation of T3 or T4- both of which run high to high normals.

    I cannot eat any seafood, as in my previous email, I can only eat non-histamine producing food. I have been tested for celiac disease, but negative, also I am a type I diabetic, so I do not eat a lot of gluten anyway. All of my metals/ vitamin levels were tested, including Se, those are normal.

    My cortisol level is normal. I was on steroids August through October, on and off, because nothing else would work. They took me off because I am diabetic, not a good course of treatment. I carry an EPI pen all the time.

    I am pretty certain that the only thing left is surgery, however, how long before I should have it? I have been on synthroid 6 months now. I go hyper, losing 10-12 lbs in a month, then hypo, gaining 10 lbs back but no change in caloric expense/ intake.

    I can't find anyone who is going through what I am, I am ok with having surgery but I want to make sure that is our last option.

    I have gone so far as to order the medical textbooks that biochemically break down Hashimoto's thyroiditis and from what I can understand, I think it might be total thyroidectomy with a lifetime of coping (mentally, physically, psychologically) with autoimmunity.

    Thank you for your info- if you find out anything, please let me know- my surgeon, if they take it out, will publish the case study so other people will have this info!

    Lori

     
    Old 04-22-2009, 10:41 AM   #6
    elmhar
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    Re: hashimoto's and uticaria

    Lori,

    Given your situation, I would probably opt for thyroidectomy.

    In terms of "a lifetime of autoimmunity," -- well, you do have the T1DM going, but as far as thyroid, there are IMO worse choices than surgery.

    Anti-thyroid meds &/or RAI would, IMO, be a much worse choice. When you leave a damaged nonfunctioning gland in place, autoimmunity against it can skyrocket. -- Esp. for those w/predisposition to autoimmune disease. I realize you don't seem to have med opinion aiming you in those directions, but I do believe there are any number of endos who would see ATM & RAI as the way to go.

    Learn all you can in advance of your operation, should you elect to go that route. One of the main boondoggles for TT is parathyroid function & calcium status. Another is re-establishing a feeling of well-being when one is completely dependent on synthetic thyroid hormones. You CAN work through these issues -- it just may take a little time & patience, as well as information & open-mindedness, which I believe you do demonstrate, in addition to a good deal of courage & intelligence.

    Best wishes.

     
    Old 04-22-2009, 10:43 AM   #7
    elmhar
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    Re: hashimoto's and uticaria

    Lori,

    In your situation, I would go with the TT. I hope it helps your hives & eliminates the anaphylactic episodes. Please let us know how you do!

    Best wishes.

     
    Old 04-23-2009, 09:40 AM   #8
    Hashihelp
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    Re: hashimoto's and uticaria

    Is there any chance that my antibodies will continue to drop as the thyroid "calms down"? My endo said that after years of being inflamed it takes that a long time, if not as long, to get it to be "quiet".

    They have dropped steadily (30-50 points a month), but he said it could go two ways. One, they continue to drop and then even out, no more dropping, just stasis level. I may be better at this point, no hives, etc. OR could be just as bad.

    Two, they continue to drop all the way down to a more "manageable" level, no more antihistamines, no hives AND I go into a remission.

    I am not sure there is anyway to know, other than to wait and see? There can't be too much harm in that, other than wasted time if it turns out to not matter what the antibody level is- it's just that in several medical books, there are studies that show remission after the thyroid is suppressed- the antibodies continue to drop.

    Thanks for your opinions and concern- this has been most trying and it sounds like you definitely know what you're talking about!

     
    Old 04-23-2009, 10:52 AM   #9
    elmhar
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    Lori --

    Let me say straight off, I do not have an answer to your question about how long it would take for the Synthroid to help reduce the thyroid antibody response in your body. For one thing, there's probably a bit of individual variation in how people respond ...

    In general, with a T4 med like Synthroid, the much-quoted stat is that it takes about 6 weeks at a given dosage to achieve equilibrium with the body's own thyroid hormone production. That says nothing about the immune response -- but probably does figure in, someway, somehow.

    IF I were in your shoes, with the anaphylactic episodes, I wouldn't choose to use a T4 med. This is a personal decision, based in part on the fact that I am one of "those people" who always struggles with low free T3. In my own case w/the thyroid-related uticaria, it was only with a T3 med, Cytomel, that I was able to eliminate the uticaria. It was also recommended to me by an well-respected immunologist with a research background, who felt that Cytomel was usually a more direct & more effective route to thyroid suppression & antibody reduction.

    Obviously med opinions differ on this subject.

    My understanding of the physiology is that it is the unbound active thyroid hormone -- free T3 -- that is the main thyroid workhorse. One effect of T4 meds is that, through feedback loops, they can, in some people, actually lead to decreased conversion of T4 to T3.

    However, if your free T3s are in the upper part of the range using Synthroid alone, perhaps for you, this is going to work. As you say, probably a wait & see scenario ... the fact that you ARE seeing some decrease is a good sign.

    But still ... If I'd had more than one anaphylactic episode as you've had, there is no doubt in my mind that I'd want to be maintained on steroids short-term until I had the TT. While my own thyroid-related uticaria was simply drive-you-crazy-hives, without anaphylaxis, I HAVE experienced anaphylaxis related to other allergies. Nasty. Dangerous.

    Since we're going on about this -- I'd caution you to research carefully should the "opportunity" to have RAI done present itself by way of your endo. My brother's experience was that his antibody level skyrocketed following RAI. He's had a hellacious time since undergoing that procedure 2 yrs. ago.

    Best wishes for continued healing!

     
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