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Hashimoto's Thyroiditis and IVIG Treatment?*

Autoimmune Diseases | Last Active: 1 day ago | Replies (80)

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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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Replies to "Hello @michaelpaul, welcome to Connect. I would like to invite @rwgiroux and @bburleson1 who have received..."

@JustinMcClanahan, thanks for the welcome. Regarding the IVIG treatment, I'm just trying to educate myself. Starting late last year, I began experiencing frequent episodes of syncope accompanied by very low blood pressure. The syncope's under control now, but I still have extreme fatigue and dizziness, accompanied with peripheral pain and numbness.

After a lot of false leads, a cardiologist referred me to a very good autonomic nervous system specialist, and I have finally received a diagnosis of neuropathic postural orthostatic tachycardia syndrome, with multiple markers for Hashimoto's and mitochondrial disease - high thyroglobulin antibody, antithyroid peroxidase, and TSH, and with low coenzyme Q10. I've now been referred to an endocrinologist.

The neurologist talked to me about IVIG treatment, and I'll wait to see what the endocrinologist recommends, but in the meantime I'd like to hear from peers who have had the same or similar treatment.

Thanks again for reaching out.

Sorry, but all my doctor does for Hashimoto's is treat for Hypothyroidism with Levothyroxine. Nothing else has been offered.

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.

I was diagnosed with hypothyroid 35 years ago; Lupus 25 years ago, and a multitude of autoimmune disorders since then: Hashimoto’s, Sjogrens, microscopic colitis, peripheral neuropathy, raynaud’s, and other symptoms not designated as a disease yet. Recently I was referred to a neurologist who specializes in autoimmune problems due to some new symptoms. After some tests he concluded that my peripheral immune system was under attack and subscribed a five-day ivig infusion. That concluded 10 days ago and I am still suffering from headaches (not unusual) and dizziness. Yesterday I had my thyroid levels tested and my numbers were greatly changed since my last testing mid-December. My question is: could my levels of T-SHIRT, T-3 , and T-4 be affected by my ivig treatment?

I have Hashi's too. But where is the research to back up this treatment?

Can you explain more about IVIG. I have Hashi's

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 !