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.

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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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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

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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?

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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

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@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. `

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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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@kjo1

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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@kjo1 Kudos to you for seeing a functional medicine doctor! I see one too, also known as an environmental medicine doctor and I have Hashimotos' too. He was the one who told me to have my silver amalgam fillings removed from my mouth. My blood work for antibodies directed against my thyroid was off the charts, so the levels could not be read. After all of my old filings were replaced by a biological dentist, my antibody levels dropped significantly and were low, not gone, but in the lower quarter of the scale. Over a couple years, my thyroid improved and we could lower the dose of thyroid hormone I was taking. I had seen a video online that they referred to as a "smoking tooth" where they rubbed a pencil eraser on an old silver filling on a tooth with some contrast lighting and it showed the mercury gas that escaped from the amalgam filing. I used to get sore throats after I ate when I still had the old fillings in my mouth, and I tested myself by putting food in a blender, so I did no chewing, and there was no sore throat. As soon as I started chewing on the old fillings again, my throat hurt. Since the fillings were replaced, this doesn't happen anymore. I take Naturethroid, and these days, there are shortages of this and Armour Thyroid and many pharmacies have no supplies. My doctor was able to find Naturethroid by calling a pharmacy that is a distributor for them and they mail order my prescription. They called the manufacturer to get the information. He prefers this to synthetic thyroid hormones because it has all the components of the T3 T4, etc. My doctor also does allergy testing and custom extracts for allergy injections which lowers inflammation, and optimizes female hormone levels. I have food allergies too, so I avoid lots of stuff including gluten, and a low sugar intake, basically just healthy eating goes a long way toward reducing inflammation. I exercise and I have energy as long as I keep the allergies and asthma under control.

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Hi Jennifer, I've had my silver replaced. But the custom extracts for allergy injections I've never heard of. I'd like to know more about that. My doc did a food allergy test for me, I wasn't to bad. Once I started on Naturethroid and my numbers improved I was able to stop talking my asthma medicine and I was able to stop taking allergy pills daily. But I am lactose intolerant. And allergic to blueberries, pecans and mushrooms. I've been working on cutting my sugar intake, that is definitely a stumbling block for me, but I'm getting better, I rarely drink soda anymore, I'm pretty much a water/tea drinker. I recently have started IV vitamins and am noticing more energy, hopefully the inflammation will come down. Do you have cortisol issues? I know cortisol levels fluctuate throughout the day I've taken blood work twice morning and afternoon and I basically have no cortisol, this worries me. Has your doctor tested you on this? Thanks for your interest.

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@kjo1

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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Hello @kjo1, Thank you for sharing your story and what helps you. I would like to add my welcome to Connect along with @jenniferhunter who has also shared some great information - Kudos to you both!

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@kjo1

Hi Jennifer, I've had my silver replaced. But the custom extracts for allergy injections I've never heard of. I'd like to know more about that. My doc did a food allergy test for me, I wasn't to bad. Once I started on Naturethroid and my numbers improved I was able to stop talking my asthma medicine and I was able to stop taking allergy pills daily. But I am lactose intolerant. And allergic to blueberries, pecans and mushrooms. I've been working on cutting my sugar intake, that is definitely a stumbling block for me, but I'm getting better, I rarely drink soda anymore, I'm pretty much a water/tea drinker. I recently have started IV vitamins and am noticing more energy, hopefully the inflammation will come down. Do you have cortisol issues? I know cortisol levels fluctuate throughout the day I've taken blood work twice morning and afternoon and I basically have no cortisol, this worries me. Has your doctor tested you on this? Thanks for your interest.

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@kjo1 I'm not aware of having issues with cortisol levels. At one time, I was going through horrible work stress and this functional medicine doctor tested that in saliva samples, and he had me take supplements for that to support adrenal function. He also balances female hormones and the allergy testing to optimize health. Stress sure did affect my allergies and made them worse, but they changed after that stress was over, and improved a bit. The allergy testing is what he called the maximum tolerated dose and they test individual things like a specific ragweed species (there are several all producing specific pollen). They had vials of different individual strengths and they inject it under your skin and wait 5 minutes and see if the wheal grows and measure it. If you react to that dose, they lower it on the next test injection. Each extract test vial strength goes up by 10 times, so they find the one that is highest that you don't react to for that specific pollen. A lot of allergy testing is to a standard mix of pollen, and they sometimes use a mix if they work well. My trees extract is a mix. If it's not working, they will need to test individual components. Then they make a vial for you that might have a dozen different extracts in it with your specific dosage for each and they trained me to administer my own allergy shots and I have 10 custom vials. It takes 2 to 3 hours for each test session and you might have 4 appointments to get through everything. I need to retest every 3-4 years or if the allergy shots stop working. He says that treating the allergies lowers inflammation. Getting the right doses on thyroid meds and female hormone replacement (after menopause) also lower inflammation. He optimizes vitamin D. I have lots of foods I have to avoid that I figured out with an elimination diet. He also says antihistamines will stop being effective as your body gets used to them. I also use a hepa filter with activated carbon in my home, and had duct work cleaned. I am very allergic to molds and it flares my asthma and sometimes when the spore count is really high, allergy shots are not enough and I take an antihistamine and stay inside with my filters. he tests the breakdown pathways for estrogen and progesterone and I have a supplement to take to aid that process because if your body doesn't detox that well, that is what can lead to increased risks for some hormone related cancers. It's for cardiovascular health. I take Methyl CpG from Ortho Molecular Labs with supports methylation detox pathways and is a mix of B vitamins. You can also lower inflammation with tumeric and Ortho Molecular has a supplement Traumeric that contains tumeric,quercitin, rutin,bromelian and vitamin C all of which helps lower inflammation. Cutting out sugar and refined carbohydrates also goes a long way to lower blood sugar, and sugar promotes inflammation. If I eat things with sugar, I can see fluid retention in my face the next day, and avoiding it makes me look younger. I'm not perfect, but I try my best. I find that many spices bother me or have gluten which causes breathing and gut problems, so I don't use them. I don't drink soda or use artificial sweeteners. I do use stevia which is natural and does not raise blood sugar. I was able to get off asthma inhalers some years ago by removing everything in my diet that caused breathing issues or phlegm, and we built our house with hardwood floors and no carpeting since I was chemically sensitive. After testing, recently I found out I was allergic to my cats, so I have an extract for that, use a hepa filter, wipe them with my wet hand to reduce dander (they are short hair), vacuum and wash the bed covers often, and I'm breathing just fine with the cats. I also use a lint roller on them to remove hair and dander, and they don't mind. This doctor looks at the biochemistry of what happens in the body and tries to fine tune that. He told me he's the only doctor in northern IL who does allergy testing like this. I makes sense to me and it really works.

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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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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?

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