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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@slfaina

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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Can anyone recommend a functional medicine doctor in Ontario or Quebec Canada? I was diagnosed with Hashimoto’s disease in 2016 after having gone for years with various conditions being ignored by my doctor. I lived a healthy lifestyle I used to be a part time aerobics instructor but started noticing that instead of feeling energetic after my workouts, I’d feel completely drained. I also noticed that I was gaining weight and it seemed the harder I worked out, the more weight I would gain. I started struggling to get out of bed to go to work because of lack of energy. My family doctor said I should cutback on my calories and follow the Canada good guide. My hair started falling out, I used to have hair below my shoulders it’s now about 2 inches long in spots. I developed psoriasis all over my body and gained 100 pounds in a year. I was having trouble swallowing so my doctor sent me for an MRI and they found nodules in my throat. She sent me to an endocrinologist who looked at my results, squeezed my neck and told me not to worry about them that I should just have an MRI done every year. I started googling my symptoms and it seemed like they indicated Hashimotos. I found an alternative medicine doctor who ran a number of tests, it came back my antibodies were off the charts and he confirmed I have the disease. He put me on levothyroxine and vitamin D. I felt great for about a week or two but after that it was back to my new normal. He kept upping the dosage and checking my blood but my T3, T4 and TSH levels were not where he wanted them to be and after a year he said he didn’t understand why. That got me so mad I stopped taking the medication. I thought why am I pumping myself full of these pills if they’re not doing anything. Here we are 2019, I’m 115 pounds overweight, my face is puffy, because of the weight my knees hurt so much I can’t squat or run. In the summer I retain so much water, I can’t wear my regular shoes. I’ve been wearing wigs to cover up my hair. I started drinking pure apple cider vinegar and that cleared up the psoriasis everywhere except for my scalp - that could be because of the wigs but who knows. I had read about natural dessicated thyroid and had asked my alternative medicine doctor about it but he said he wouldn’t prescribe it because the dosages are not consistent. I’m at my wits end. I look in the mirror and feel like it’s a stranger staring back at me. I want to go for walks without feeling like spikes are being jammed in my knees, ride my bike, just feel healthy again. If anyone can recommend a functional medicine doctor here in Canada would you please let me know. Willing to travel. Thanks

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@sufferingcdn

Can anyone recommend a functional medicine doctor in Ontario or Quebec Canada? I was diagnosed with Hashimoto’s disease in 2016 after having gone for years with various conditions being ignored by my doctor. I lived a healthy lifestyle I used to be a part time aerobics instructor but started noticing that instead of feeling energetic after my workouts, I’d feel completely drained. I also noticed that I was gaining weight and it seemed the harder I worked out, the more weight I would gain. I started struggling to get out of bed to go to work because of lack of energy. My family doctor said I should cutback on my calories and follow the Canada good guide. My hair started falling out, I used to have hair below my shoulders it’s now about 2 inches long in spots. I developed psoriasis all over my body and gained 100 pounds in a year. I was having trouble swallowing so my doctor sent me for an MRI and they found nodules in my throat. She sent me to an endocrinologist who looked at my results, squeezed my neck and told me not to worry about them that I should just have an MRI done every year. I started googling my symptoms and it seemed like they indicated Hashimotos. I found an alternative medicine doctor who ran a number of tests, it came back my antibodies were off the charts and he confirmed I have the disease. He put me on levothyroxine and vitamin D. I felt great for about a week or two but after that it was back to my new normal. He kept upping the dosage and checking my blood but my T3, T4 and TSH levels were not where he wanted them to be and after a year he said he didn’t understand why. That got me so mad I stopped taking the medication. I thought why am I pumping myself full of these pills if they’re not doing anything. Here we are 2019, I’m 115 pounds overweight, my face is puffy, because of the weight my knees hurt so much I can’t squat or run. In the summer I retain so much water, I can’t wear my regular shoes. I’ve been wearing wigs to cover up my hair. I started drinking pure apple cider vinegar and that cleared up the psoriasis everywhere except for my scalp - that could be because of the wigs but who knows. I had read about natural dessicated thyroid and had asked my alternative medicine doctor about it but he said he wouldn’t prescribe it because the dosages are not consistent. I’m at my wits end. I look in the mirror and feel like it’s a stranger staring back at me. I want to go for walks without feeling like spikes are being jammed in my knees, ride my bike, just feel healthy again. If anyone can recommend a functional medicine doctor here in Canada would you please let me know. Willing to travel. Thanks

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@sufferingcdn Here's a link to find an environmental medicine doctor who will probably help. I take Naturethroid which is desicated pig thyroid and it works fine. They have had some issues with supply, but you can call the company that makes it to find their distributors. You described a lot of low thyroid symptoms. I've had them too, and my antibodies were off the charts too until I had all the silver dental amalgam fillings removed from my mouth. Then they tested much lower and results could be read. The mercury leaches out of the fillings causing Hashimoto's according to my environmental medicine doctor. Good for you for advocating for yourself. Your doctors didn't help much, and I hope you find better ones. Levothyroxin does work, but the dosing is different. With natural desicatted hormone, you have all the components, and with Levothyroxin, it is used to make the other components.

https://www.aaemonline.org/find.php
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@sufferingcdn

Can anyone recommend a functional medicine doctor in Ontario or Quebec Canada? I was diagnosed with Hashimoto’s disease in 2016 after having gone for years with various conditions being ignored by my doctor. I lived a healthy lifestyle I used to be a part time aerobics instructor but started noticing that instead of feeling energetic after my workouts, I’d feel completely drained. I also noticed that I was gaining weight and it seemed the harder I worked out, the more weight I would gain. I started struggling to get out of bed to go to work because of lack of energy. My family doctor said I should cutback on my calories and follow the Canada good guide. My hair started falling out, I used to have hair below my shoulders it’s now about 2 inches long in spots. I developed psoriasis all over my body and gained 100 pounds in a year. I was having trouble swallowing so my doctor sent me for an MRI and they found nodules in my throat. She sent me to an endocrinologist who looked at my results, squeezed my neck and told me not to worry about them that I should just have an MRI done every year. I started googling my symptoms and it seemed like they indicated Hashimotos. I found an alternative medicine doctor who ran a number of tests, it came back my antibodies were off the charts and he confirmed I have the disease. He put me on levothyroxine and vitamin D. I felt great for about a week or two but after that it was back to my new normal. He kept upping the dosage and checking my blood but my T3, T4 and TSH levels were not where he wanted them to be and after a year he said he didn’t understand why. That got me so mad I stopped taking the medication. I thought why am I pumping myself full of these pills if they’re not doing anything. Here we are 2019, I’m 115 pounds overweight, my face is puffy, because of the weight my knees hurt so much I can’t squat or run. In the summer I retain so much water, I can’t wear my regular shoes. I’ve been wearing wigs to cover up my hair. I started drinking pure apple cider vinegar and that cleared up the psoriasis everywhere except for my scalp - that could be because of the wigs but who knows. I had read about natural dessicated thyroid and had asked my alternative medicine doctor about it but he said he wouldn’t prescribe it because the dosages are not consistent. I’m at my wits end. I look in the mirror and feel like it’s a stranger staring back at me. I want to go for walks without feeling like spikes are being jammed in my knees, ride my bike, just feel healthy again. If anyone can recommend a functional medicine doctor here in Canada would you please let me know. Willing to travel. Thanks

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I was diagnosed hypo in 2008. After 2 md's and 2 endo's telling me that my thyroid was dying and levothyroxine dose would increase over time and that would be the only thing I could expect to help with the many symptoms that I was experiencing, I got busy reading. For me, natural desiccated thyroid hormone (Armour) and an elimination diet (The "Plan" by Lyn Genet) gave me the most relief. You must educate yourself on autoimmune disease in general and reading about the experience of others with hashimotos is also very helpful. I am on a gluten free, low sugar and minimal dairy diet, take B12 and D3/K2 and selenium supplements, among others and exercise as much as I can tolerate. Some resources that I have found helpful: Chris Kresser, Izabella Wentz, Amy Meyer, Sarah Zeilsdorf to name a few and there are soooo many. Read, read, read.....
Hashimotos is miserable but manageable and possibly controllable. If you don't manage it you may find yourself with additional autoimmune disorders. None of them are pleasant...
I wish you good luck and success on your journey. Remember that YOU are the key to taking back your health and you will be ok. Don't give up.

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@jenniferhunter

@sufferingcdn Here's a link to find an environmental medicine doctor who will probably help. I take Naturethroid which is desicated pig thyroid and it works fine. They have had some issues with supply, but you can call the company that makes it to find their distributors. You described a lot of low thyroid symptoms. I've had them too, and my antibodies were off the charts too until I had all the silver dental amalgam fillings removed from my mouth. Then they tested much lower and results could be read. The mercury leaches out of the fillings causing Hashimoto's according to my environmental medicine doctor. Good for you for advocating for yourself. Your doctors didn't help much, and I hope you find better ones. Levothyroxin does work, but the dosing is different. With natural desicatted hormone, you have all the components, and with Levothyroxin, it is used to make the other components.

https://www.aaemonline.org/find.php

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Thank you for sending the link! Much appreciated!

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@sufferingcdn

Can anyone recommend a functional medicine doctor in Ontario or Quebec Canada? I was diagnosed with Hashimoto’s disease in 2016 after having gone for years with various conditions being ignored by my doctor. I lived a healthy lifestyle I used to be a part time aerobics instructor but started noticing that instead of feeling energetic after my workouts, I’d feel completely drained. I also noticed that I was gaining weight and it seemed the harder I worked out, the more weight I would gain. I started struggling to get out of bed to go to work because of lack of energy. My family doctor said I should cutback on my calories and follow the Canada good guide. My hair started falling out, I used to have hair below my shoulders it’s now about 2 inches long in spots. I developed psoriasis all over my body and gained 100 pounds in a year. I was having trouble swallowing so my doctor sent me for an MRI and they found nodules in my throat. She sent me to an endocrinologist who looked at my results, squeezed my neck and told me not to worry about them that I should just have an MRI done every year. I started googling my symptoms and it seemed like they indicated Hashimotos. I found an alternative medicine doctor who ran a number of tests, it came back my antibodies were off the charts and he confirmed I have the disease. He put me on levothyroxine and vitamin D. I felt great for about a week or two but after that it was back to my new normal. He kept upping the dosage and checking my blood but my T3, T4 and TSH levels were not where he wanted them to be and after a year he said he didn’t understand why. That got me so mad I stopped taking the medication. I thought why am I pumping myself full of these pills if they’re not doing anything. Here we are 2019, I’m 115 pounds overweight, my face is puffy, because of the weight my knees hurt so much I can’t squat or run. In the summer I retain so much water, I can’t wear my regular shoes. I’ve been wearing wigs to cover up my hair. I started drinking pure apple cider vinegar and that cleared up the psoriasis everywhere except for my scalp - that could be because of the wigs but who knows. I had read about natural dessicated thyroid and had asked my alternative medicine doctor about it but he said he wouldn’t prescribe it because the dosages are not consistent. I’m at my wits end. I look in the mirror and feel like it’s a stranger staring back at me. I want to go for walks without feeling like spikes are being jammed in my knees, ride my bike, just feel healthy again. If anyone can recommend a functional medicine doctor here in Canada would you please let me know. Willing to travel. Thanks

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Find a functional doc that will prescribe you desiccated thyroid meds. Keep looking until you find one!!! His comment that they are not consistent is a very dated statement and simply not true anymore. You will improve if you add it in addition to your Synthroid or levothyroxine . Also, have that doc do a micro nutrients test and start your supplements, they work. I take IV vitamins, glutathione and ALA therapy every 10 days and have never felt better. As well as my supplements. You may want to take a D3 with K2 the K2 helps your D absorb. The glutathione turns into amino acids and is great detox for your body and liver. My sinuses and breathing have never been better. The ALA is just a series of 4 I'm taking because I'm extremely low on it based on my blood work. But after my first one, I've noticed a difference. Read , read, read, read!! Vitamins, and thyroid and inflammation. Our bodies need this. And we as individuals need to try things and do what makes us feel better. This is a journey, you will feel better, it just takes time.

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@msinvula

Hashimoto thyroiditis diagnosed a year ago. No known morbidity.
On eltroxin but TSH is zero with marginally high active hormones.
Antithyroid globulins very high and relentlessly rising.
Patient feels contantly tired.
Any tips on management? Do steroids play any role esp on background of of rising antithyroids?

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Hello @msinvula, Welcome to Connect. There is another active discussion where I think your post will receive more visibility. I'm tagging our moderator @ethanmcconkey to see if we should move your post to the following discussion where you can meet others with your condition and learn what helps them.

> Groups > Autoimmune Diseases > Hashimoto's Thyroiditis and IVIG Treatment?
-- https://connect.mayoclinic.org/discussion/hashimotos-thyroiditis-and-ivig-treatment/

There is also another discussion with the same name but fewer posts that you may want to read through here:
> Groups > Autoimmune Diseases > Hashimoto's Thyroiditis
-- https://connect.mayoclinic.org/discussion/hashimotos-thyroiditis-1/

I did find the following article that may provide some of the information you asked.
How Hashimoto's Thyroiditis Stopped Ruling My Life
-- https://www.endocrineweb.com/conditions/hashimotos-thyroiditis/how-hashimotos-thyroiditis-stopped-ruling-life

Can I ask if you have found anything that helps with your symptoms?

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Hashimoto thyroiditis diagnosed a year ago. No known morbidity.
On eltroxin but TSH is zero with marginally high active hormones.
Antithyroid globulins very high and relentlessly rising.
Patient feels contantly tired.
Any tips on management? Do steroids play any role esp on background of of rising antithyroids?

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Hi @msinvula I wanted to join @johnbishop in welcoming you to Connect. You may have noticed I moved your discussion to this existing discussion on Hashimoto's thyroiditis so that you can connect with others who have similar experiences. Simply click VIEW & REPLY in your email notification to get to your post.

I'd like to tag fellow Connect members @jenniferhunter @kjo1 and @sufferingcdn as they have experience with Hashimoto's and may be able to offer you support.

Back to you @msinvula is there anything that you have found to be helpful when you are tired?

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@msinvula

Hashimoto thyroiditis diagnosed a year ago. No known morbidity.
On eltroxin but TSH is zero with marginally high active hormones.
Antithyroid globulins very high and relentlessly rising.
Patient feels contantly tired.
Any tips on management? Do steroids play any role esp on background of of rising antithyroids?

Jump to this post

@msinvula Hello, I have Hashimotos' and I am treated by a functional medicine doctor and take natural desiccated pig thyroid. Some patients cannot convert the components in thyroid medicine. If I remember right, that is converting T4 to T3 (or that's backwards), but what I can tell you is the synthetic hormones do NOT have all the components and some patients don't feel well on them no matter what the dose is. It would be worth asking your doctor about trying natural hormones. There is a lot of information in my earlier posts in this discussion about how my antibody levels were off the charts while I had old silver amalgam dental fillings, and after those were removed, the levels were very low. You might want to look for something similar that might be toxic to your body that could contribute to thyroid dysfunction. If your doctor doesn't see the value in this, you may want to look for a functional medicine doc. See this link for a provider search. https://www.aaemonline.org/find.php I don't know if steroids are an issue, but my doctor advises against them on a long term bases because of adverse side effects. TSH is thyroid stimulating hormone, and if the body senses the thyroid is producing hormones (or from your meds), that level would drop. Only a specialist could answer what is appropriate because it's tricky and there are numerous components that have to be correct for it all to work in harmony. You thyroid can improve if your health improves and you lower inflammation in your body and get rid of toxicities. I have had my dose cut in half and felt fine for a long time on it. Lately, I have needed more hormones and I have a potential issue with an old root canal in a tooth that may be causing problems and affecting my thyroid again. According to my wholeistic dentist, root canals have cadmium in them to try to kill the infection which is a heavy metal. Silver metal fillings have tin, silver and mercury and with an old filling, the mercury gas leaches out causing toxicity affecting the thyroid that is in close proximity to the throat.

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@michaelpaul, @kjo1, @tinkerbell, @sherrirnovicki1, @normaw, @darlia and @taterjoy -- I thought you might be interested in an August 2019 article that I recently saw on treating Hashimoto’s thyroiditis with surgery.

Is there a role for surgery in treating Hashimoto’s thyroiditis?
-- https://www.health.harvard.edu/blog/is-there-a-role-for-surgery-in-treating-hashimotos-thyroiditis-2019081217443

Have you found anything that helps with your symptoms from Hashimoto's thyroiditis?

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