1. < Autoimmune Diseases

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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Mentor
John, Volunteer Mentor | @johnbishop | Mar 15, 2023
In reply to @rose47 "I have Thyroid Eye Disease. Does anyone know if IVIG, is used for TED?" + (show)
@rose47

I have Thyroid Eye Disease. Does anyone know if IVIG, is used for TED?

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Hi @rose47, I'm not familiar with the different treatments for Thyroid Eye Disease but there is another discussion on Thyroid Graves Disease which I think is another name for TED that might be helpful.
--- Thyroid Graves Disease: Anyone else?: https://connect.mayoclinic.org/discussion/thyroid-graves-disease/.

Also, Mayo Clinic has information on the condition here:
--- Thyroid Eye Disease Clinic: https://www.mayoclinic.org/departments-centers/thyroid-eye-disease-clinic/overview/ovc-20503926

REPLY
vero210 | @vero210 | Mar 18, 2023
In reply to @kyjeanne "Sorry, but all my doctor does for Hashimoto's is treat for Hypothyroidism with Levothyroxine. Nothing else..." + (show)
@kyjeanne

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

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I’m taking tirosint for hashimotos so my anti- bodies are abnormal but tsh t3-4 free and total are normal and tirosint has helped improve my numbers they are still elevated but getting better

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1 reply
effie05 | @effie05 | Mar 25, 2023
In reply to @michaelpaul "@JustinMcClanahan, thanks for the welcome. Regarding the IVIG treatment, I'm just trying to educate myself. Starting..." + (show)
@michaelpaul

@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.

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I have Hashimoto’s all my dr gives me is Levothyroxine, I have peripheral neuropathy from b12 deficiency and chronic pain syndrome, and 1 day I was standing by my desk and I just pasted out I never do that and have never again and seen a cardiologist he said my heart was fine, because it happened at work I had a thorough work up and was diagnosed with Syncope I never heard of it till now I thought it was a made up diagnosis! I’m certainly not glad anyone has it but glad it wasn’t made up! I am learning a lot! Amazing how different dr’s treat the same illness

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sussudio75 | @sussudio75 | Mar 28, 2023

I have Hashimoto’s but my thyroid is totally gone! I take 75mcg replacement daily.

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sussudio75 | @sussudio75 | Mar 28, 2023
In reply to @kyjeanne "Sorry, but all my doctor does for Hashimoto's is treat for Hypothyroidism with Levothyroxine. Nothing else..." + (show)
@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

My thyroid is gone now (Hashimoto’s) and take Levothyroxin 75 mcg daily and my levels are normal.

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marshbs | @marshbs | Jun 8 11:26am
In reply to @brens5tzus "Hi, I run across this web page when doing a search on immune modulating treatments for..." + (show)
@brens5tzus

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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Does hyperthyroidism cause body aches. My endocrinologist says it does not. I have had terrible body aches since January and now my wrist, hand and ankles hurt. I have always had non-toxic mult-nodular goiter, but now my thyroid is pushing on my trachea and needs to come out. I found out I have hyperthyroidism and my TSH has dropped to 0.07. I just really want to know if this is why I ache soooo much and why I'm so tired. Thank You.

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3 replies
Mentor
Laurie, Volunteer Mentor | @roch | Jun 9 7:47am
In reply to @marshbs "Does hyperthyroidism cause body aches. My endocrinologist says it does not. I have had terrible body..." + (show)
@marshbs

Does hyperthyroidism cause body aches. My endocrinologist says it does not. I have had terrible body aches since January and now my wrist, hand and ankles hurt. I have always had non-toxic mult-nodular goiter, but now my thyroid is pushing on my trachea and needs to come out. I found out I have hyperthyroidism and my TSH has dropped to 0.07. I just really want to know if this is why I ache soooo much and why I'm so tired. Thank You.

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@marshbs

Being tired could definitely be due to low TSH. Not sure about aches and pains.

Has your provider put you on Levothyroxine / Synthroid?

REPLY
2 replies
lkirnbauer | @lkirnbauer | Jun 9 9:06am
In reply to @marshbs "Does hyperthyroidism cause body aches. My endocrinologist says it does not. I have had terrible body..." + (show)
@marshbs

Does hyperthyroidism cause body aches. My endocrinologist says it does not. I have had terrible body aches since January and now my wrist, hand and ankles hurt. I have always had non-toxic mult-nodular goiter, but now my thyroid is pushing on my trachea and needs to come out. I found out I have hyperthyroidism and my TSH has dropped to 0.07. I just really want to know if this is why I ache soooo much and why I'm so tired. Thank You.

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I have Hypothyroidism and usually when you have Hyperthyroidism you are not tired, but the opposite. I had some joint pain before starting on 112 mcg of Synthroid and now my joint pain is gone. It could also be coincidental. Have your Thyroid Panel checked again as it sounds like you have hypothyroidism instead of hyperthyroidism.

REPLY
lkirnbauer | @lkirnbauer | Jun 9 9:10am
In reply to @vero210 "I’m taking tirosint for hashimotos so my anti- bodies are abnormal but tsh t3-4 free and..." + (show)
@vero210

I’m taking tirosint for hashimotos so my anti- bodies are abnormal but tsh t3-4 free and total are normal and tirosint has helped improve my numbers they are still elevated but getting better

Jump to this post

There is a medication called Cytomel that will help with your Hashimoto’s. I was on it and lost about 10 lbs. It’s a great drug, but be careful on it, because your body could go to Hyperthyroidism if you’re taking too much and your body will start to get the shakes. Start with a low dose.

REPLY
sadea0208 | @sadea0208 | Jun 9 9:44am

I have Hadshimoto's Thyroiditis and hypothyroidism. Initially, prior to being diagnosed, my body was in a lot of discomfort. My joints hurt. I was so fatigued.
Once I was diagnosed and stabilized on Synthroid/Levothyroxine, I improved drastically! (I didn't have skin issues or rashes at that time.
It's been 15yrs. since my diagnosis. Two years ago I began having rashes and lesions on my legs. I was diagnosed with Lichen Planus on my skin. The rash, lesions etc... flare up and down for me. The severely of it varies a lot. You might want to research this. Unfortunately, I was also diagnosed with Esophageal Lichen Planus and Oral Lichen Planus. ( Esophageal LP is extremely rare. Less than 50 people in the country have this)
There is a common denominator in many patients with LP, it's Hashimoto's Thyroiditis!
FYI.,.. Lichen Planus is also an autoimmune disease.

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