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michaelpaul
@michaelpaul

Posts: 2
Joined: May 05, 2017

Hashimoto's Thyroiditis and IVIG Treatment?

Posted by @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 normaw, taterjoy

REPLY

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?

@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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@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.

@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?

Jump to this post

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

For

Hello Michaelpaul: I also was diagnosed with hashimotos thyroiditis, and have high markers also, even though I take levothyroxine daily (AM, empty stomach, AT LEAST one hour before eating). My current endocrinologist is not very interested in thyroid disease, so I get my TSH and panel tests done yearly through an independent lab. My dose always needs to be changed. I have also have low blood pressure, and years ago had syncopal episodes during intense aerobic exercise. They tested my heart health, and found nothing wrong. No one has asked me about IVIG therapy. I have other health conditions that may or may not be (according to the medical literature) linked to autoimmune causes, including idiopathic anaphylaxis; polycystic ovarian syndrome; and porokeratosis (skin disorder). I have a blood marker for lupus, but not enough symptoms to be diagnosed with lupus.

Please keep us posted if you try the IVIG therapy, or if your endocrinologist sheds some light on treatment options. I hope your peripheral pain and numbness have been addressed and treated. I also have a peripheral pain issue in one leg, but XRAYS showed nothing wrong. I suspect it is some sort of neuropathy, as of yet undiagnosed. While it does not keep me from exercising daily, it sometimes interferes with sleep.

@taterjoy

Hello Michaelpaul: I also was diagnosed with hashimotos thyroiditis, and have high markers also, even though I take levothyroxine daily (AM, empty stomach, AT LEAST one hour before eating). My current endocrinologist is not very interested in thyroid disease, so I get my TSH and panel tests done yearly through an independent lab. My dose always needs to be changed. I have also have low blood pressure, and years ago had syncopal episodes during intense aerobic exercise. They tested my heart health, and found nothing wrong. No one has asked me about IVIG therapy. I have other health conditions that may or may not be (according to the medical literature) linked to autoimmune causes, including idiopathic anaphylaxis; polycystic ovarian syndrome; and porokeratosis (skin disorder). I have a blood marker for lupus, but not enough symptoms to be diagnosed with lupus.

Please keep us posted if you try the IVIG therapy, or if your endocrinologist sheds some light on treatment options. I hope your peripheral pain and numbness have been addressed and treated. I also have a peripheral pain issue in one leg, but XRAYS showed nothing wrong. I suspect it is some sort of neuropathy, as of yet undiagnosed. While it does not keep me from exercising daily, it sometimes interferes with sleep.

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Hi everyone,
I also have Hashimoto’s thyroiditis and use Synthroid 50 mg daily. I went from Graves disease to remission to Hashimoto’s with the under active thyroid happening for about the last 6 months but Graves having been most of my life. I am 58.
I also have the FGFR3 ANTIBODY which is the CAUSE Of Many autoimmune disorders. It affects the nerves and for the member who said they have a leg with numbness. Get the ENT test done by a neurologist, this is the way my peripheral neuropathy started! In my left leg. It just felt numb in a small area. Now progressed to my feet and starting to have tingling a lot in my hands. I also have on and off lower BP.
I have many autoimmune disorders/chronic and my neurologist is going to test me for other markers.
I am looking for something NATURAL to use vs the IV Solumedrol steroids that I’m betting told by my Neurologist is the only treatment for even a remote bit of relief. I am looking to for any trial studies using medical Cannibus so if anyone knows of any for Neuropathy, please share. I also have Gastroparesis which is slow emptying stomach due to neuropathy.
Darlia
.

Liked by taterjoy, normaw

@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?

Jump to this post

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.

@taterjoy

Hello Michaelpaul: I also was diagnosed with hashimotos thyroiditis, and have high markers also, even though I take levothyroxine daily (AM, empty stomach, AT LEAST one hour before eating). My current endocrinologist is not very interested in thyroid disease, so I get my TSH and panel tests done yearly through an independent lab. My dose always needs to be changed. I have also have low blood pressure, and years ago had syncopal episodes during intense aerobic exercise. They tested my heart health, and found nothing wrong. No one has asked me about IVIG therapy. I have other health conditions that may or may not be (according to the medical literature) linked to autoimmune causes, including idiopathic anaphylaxis; polycystic ovarian syndrome; and porokeratosis (skin disorder). I have a blood marker for lupus, but not enough symptoms to be diagnosed with lupus.

Please keep us posted if you try the IVIG therapy, or if your endocrinologist sheds some light on treatment options. I hope your peripheral pain and numbness have been addressed and treated. I also have a peripheral pain issue in one leg, but XRAYS showed nothing wrong. I suspect it is some sort of neuropathy, as of yet undiagnosed. While it does not keep me from exercising daily, it sometimes interferes with sleep.

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I would love to learn more and explore this option.

@kyjeanne

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

Jump to this post

Same

@kyjeanne

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

Jump to this post

Mine as well. Finding the correct dosage has been months. Still in trying to figure out correct doasage. Going on since March!

@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.

Jump to this post

Hi Su Cante, I am interested in finding out how Armore worked for you? I just learned about it, and interested in seeing how it worked for others. One lady told me it was like day/night difference for her on Armore.
I didn’t even think if my insurance would pay for it. But good point. What does it cost if your insurance doesn’t pay? If you don’t mind sharing that information. Thanks Norma

Would be interested in this also. I also have Hashimotos, but only recently found out. Have been on Synthroid for 15 years, no one ever mentioned antibodies. I took an on line test myself after a routine MRI for neck arthritis showed nodules on my thyroid. My neck arthritis is the least of my worries now. I have been seeing a functional doctor, who has been helpful, but leery to take ALL the supplements. He talks about leaky gut and food sensitivities, which I tested positive for IgG and casein. It does make my nose stuffy and feel better without dairy. I would think my immune system is already making too much IgG, so would this IVIg make matters worse?

Hi @sherrirnovicki1, @normaw, @blueberre — welcome to Connect. I'm glad you found this discussion. I'm tagging @JustinMcClanahan @darlia and @taterjoy to see if they may be able to offer some suggestions for you. I also thought you might be interested in the following articles I found:

Recent Advances in Autoimmune Thyroid Diseases (Sept 2016)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5053048/

Immunoglobulin (IgG) Replacement Therapy Defined | AAAAI
https://www.aaaai.org/conditions-and-treatments/conditions-dictionary/immunoglobulin-(IgG)-replacement-therapy

John

@normaw

Mine as well. Finding the correct dosage has been months. Still in trying to figure out correct doasage. Going on since March!

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@normaw – This is from Tinkerbell – I was diagnosed with Hashimoto’s Disease when I was 60 years old. I am now 75. It was a long process getting to the correct dosage. Then when I was diagnosed with breast cancer and they took me off of hormones it changesd again. I now have Giant Cell Arteritis and they had to take me up to 100 from 88. As I have tapered down the Prednisone I am back down to 88. I take Synthroid and this is the only drug she likes to use. She does not want me on the generic. You can see that it can change according to what is going on in your body. `

I have hashimoto's. In 2016 what has changed my world has been finding a functional medicine doctor or nurse practitioner that wants to heal the root problems causing the inflammation attacking and causing the Hashimoto's. My old doctor and endocrinologist (and there were 5 total) none of them would listen to me they all wanted to just up my dosage of Levo. But after lots of reading (articles and testimonials) I knew I needed to try other things specifically a desiccated thyroid medicine along with my levothyroxine. My body was not converting my T cells properly. My body temperature was always low in the 67 to 74 range. It is normal now. I had SVT, which I had an ablation surgery for and have not had problems since the surgery. I had low blood pressure my blood pressure is normal. All the other symptoms that go along with hypothyroid, for the most part have diminished I'm still working on my internal inflammation I think that will be a lifelong journey. I get my blood work every 4 months my medicine changes often but my functional medicine doctor test all my numbers my TSH, T3 and T4 my free T3 and free T4, and my antibodies. She put me on Naturethroid along with my Levo. There are different desiccated medicines I've tried 3 different ones, Naturethroid works best for me.
My dosage of Levothyroxine has lowered to 25 mg. It was at 150. I also had a micronutrients blood work test done and was low on eight different vitamins I supplement with lots of vitamins and herbs and IV vitamins. I feel better than I have in years. I'm to the point now that I have enough energy to start walking for exercise so it's an ongoing journey. I do take IgG as a pill supplement and it helps with my immune system and our immune system is what we want to build strong for our health and with Hashimoto's. Adressing your digestive gut issues is as important a solution for your Hashimoto's. They go hand-in-hand. I take my probiotics religiously. I hope this helps you on your journey keep reading, keep trying things that make you feel better.

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