Hashimoto's Thyroiditis and IVIG Treatment?*

Posted by michaelpaul @michaelpaul, May 5, 2017

Has anyone been recommended IVIG treatment for Hashimoto’s thyroiditis? I have found plenty of references for IVIG therapy for Hashimoto’s encephalopathy, but not for thyroiditis alone. Thanks in advance for any comments.

Liked by taterjoy, normaw

what is IVIG?

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Has anyone here taking Synthroid for Hashimotos been taking their dosage before bed rather than in the morning? It seems like so many things affect the absorption, perhaps bedtime dosing would be more effective. Any advice is welcome.

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I take my synthroid along with liothyronine (Cytomel) in the am.

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@quiteachiver75

HOW DO YOU GET MORE TESTS? DOES THE DR SUGGEST OR DO YOU ASK? ITS HARD TO KNOW HOW TO FIND OUT WHATS WRONG WITH MYSELF

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Teresa, in my experience most MDs and endocrinologist of Western medicine won't do the test. In my experience I went to four doctors and one endocrinologist. I did my own reading there are doctors out there that have switch to functional/integrative medicine. Please find one. They will run blood work that empties won't because they involve vitamins and minerals and things that will help you things that your body is deficient on. Desiccated thyroid medicine has been a lifesaver for me. My regular doctors just kept raising my levothyroxine. I kept feeling worse the endocrinologist gave me cytomel (sorry about spelling) and I literally felt like I was dying. You have to listen to your body you have to be your own advocate and try things. I found a functional integrative nurse practitioner overseen by two doctors who ran the micronutrients tests on me and all of the thyroid test your t3 t4 TSH your free t3 free t4 and antibodies and instead of hypo I was hashimoto's. She started me on nature throid desiccated thyroid medicine along with my levothyroxine. I'm now off of my levothyroxine and totally on the desiccated thyroid medicine. I take a regime of supplements and feel better for it. My vitamin d has gone from an 11 to a 63 and I also do vitamin IVs once a month and Glutathione IVs and both have been a lifesaver for me. The glutathione has helped lower my antibodies and my thyroid is better I feel overall better. Keep searching keep reading there are doctors out there I have great tools and books for us to learn about our thyroid.

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@JustinMcClanahan

Hello @michaelpaul, welcome to Connect.

I would like to invite @rwgiroux and @bburleson1 who have received IVIG treatment, although for a different disorder, but may be able to give some insight to the treatment itself.

I would also like to invite @crystalgal, @kyjeanne, @taterjoy, @michellecrcrn, @dogmamat, @sebley12, @jillnc, @taffmorello, to this discussion as they have all been diagnosed with Hashimotos Thyroiditis and may be able to answer your question on whether or not they have been offered IVIG treatment.

@michaelpaul, has your medical provider suggested IVIG treatment to you? If you don’t mind sharing, what are your concerns regarding this treatment?

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Hi, I run across this web page when doing a search on immune modulating treatments for auto immune disorders.
I have been an RN for 35 years and unfortunately have 2 familial auto immune disorders. ITP and Hashimotos thyroiditis. They began 27 yrs ago during my 1st pregnancy and by my 2nd pregnancy my endocrinologist said my thyroid had burnt itself out and I would have to be on life-long thyroid hormone replacement therapy. 1 1/2 yrs ago my autoimmune conditions flaired badly. My platelets dropped to 19K with spontaneous eye/mouth bleed (flair up prob d/t hormone changes with menopause) and after failing 1st line treatment with steroids.. my hematologist started me on monthly IVIG infusions. The txs only inreased my platelets for about 2 1/2 wks but after the 3rd infusion (month) my ( life- long) neck goiter started to decrease in size as well as the achiness/fullness. My Synthroid dosage had to be decreased and by the end of 6 mo of IVIG , I was almost completely off my Synthroid ! I went on to start Rituxan txs for my ITP and I continued to need thyroid dose reductions. I finished the Rituxan txs this past March and am still off my Synthroid ! I fully feel the medical community SHOULD offer these meds to Hashimoto patients ! At age 56 I'm feeling the best I've ever felt for the past 30 years !

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@khali

what is IVIG?

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It is immuno globulins (antibodies collected from 10-12K people's blood that are given IV over a period of hours for different medical conditions (usually immuno -suppressed/compromised people or for auto immune diseases). For auto immune diseases having all the new antibodies often will trick the immune system into not attacking the body organ/tissue marked for destruction.

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@brens5tzus

It is immuno globulins (antibodies collected from 10-12K people's blood that are given IV over a period of hours for different medical conditions (usually immuno -suppressed/compromised people or for auto immune diseases). For auto immune diseases having all the new antibodies often will trick the immune system into not attacking the body organ/tissue marked for destruction.

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Thanks for sharing this information about IVIG and how it has helped your thyroid. I am managing my hashimoto's with the right supplements especially IV vitamins and minerals, amino acids but especially with IV glutathione my antibodies have gone down tremendously and I am off my levothyroxine because of that, however, I do still take a thyroid medicine called nature-throid. It would be interesting to know if IVIG treatment would further help with healing. You've given me food for thought. Thanks again.

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@sucante

My doctor says you must be treated with two synthetic hormone (?) replacements for Hashimoto’s, I take Levothyroxine and Liothyronine. These replace the Armore thyroid that I took until my insurance stopped paying for it. My sister also suffers from Hashimoto’s and is on the two meds. You might consider speaking with your Doctor about this possibility.

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To Justin mcclanahan which medications seem to work best for you the new ones or the old. Wondering because I have hashimotos and Barrett’s esophagus have had my medications switched OFTEN now I am on nature thyroid am so tired and keep gaining weight I would like to find something that works please respond

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@devinsmom

To Justin mcclanahan which medications seem to work best for you the new ones or the old. Wondering because I have hashimotos and Barrett’s esophagus have had my medications switched OFTEN now I am on nature thyroid am so tired and keep gaining weight I would like to find something that works please respond

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Hi @devinsmom, I'm sorry to hear you are having trouble with fatigue and weight gain. Is the nature thyroid you are talking about a product named Nature-Throid? It has some so-so reviews and people have said they still have fatigue and are gaining weight using it according to this article: https://www.everydayhealth.com/drugs/nature-throid/reviews.

I did find an article that might be helpful.

5 Things to Do If Your Thyroid Hormone Medication Isn't Working: https://www.endocrineweb.com/conditions/hypothyroidism/five-things-do-if-your-thyroid-hormone-medication-isnt-working

Are you able to discuss the fatigue and weight gain with your doctor to see if there is something else that will help?

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I have had Hashimoto's since my teens. I now have CIDP, a rare autoimmune neurological disorder, and receive IVIG (40 grams) five times in every four-week cycle. It hasn't had the slightest effect on my thyroid. My thyroid gland doesn't produce normal hormones. It was almost destroyed by the Hashimoto's. I take replacement hormones, adjusted periodically, and that suppresses the abnormal secretions and keeps my TSH in the normal range. No endocrinologist has ever suggested to me that IVIG could help hypothyroidism of any type. IVIG is incredibly expensive, btw. Mine costs thousands of dollars for each dose, and I pay 20%. You need a lot of money just to afford the co-pay.

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@khali

what is IVIG?

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Intravenous gamma globulin.

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