Autoimmune diagnosis issues -Hashimotos Thyroiditis with normal TSH?

Posted by reifsny @reifsny, Jun 2, 2022

Hi,
I have been getting different diagnosis and instructions with meds/vitamins with no resolution. It started over 1.5 years ago, with extreme fatigue, weight gain, nausea, headaches, lack of energy, and brain fog. First they claimed it was all from Covid and anxiety. Then I was told maybe it’s hormonal.
After multiple tests and physicians, they said all they can find is Hashimotos Thyroiditis, which they do not treat until I have an abnormal TSH. My antibodies are extremely high, but that’s all they can find. I don’t know what else to do. Any suggestions? Thanks.

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@jewles63

Hi, I too suffer from these symptoms and also have hasimotos with nodules. My numbers are normal for the 1st time in 4 yrs and unfortunately the internal vibration and cardiac and lung issues are still very much there.

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What kind of lung issues do you experience?

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@jigglejaws94

What kind of lung issues do you experience?

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Emphysema, pulmonary fibrosis and nodules in the lungs

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I just seen this is an older post. My daughter and I also have Hashimotos (dx in 2014). We struggled for years to get relief and be properly treated. We finally found a thyroid specialist here in Austin, TX. She runs proper testing and is not one of the many endocrinologist who just throw Synthroid at you.
I hope you have found a competent Dr and are doing well. If not, I see Melody at Modern Thyroid Clinic in Austin and she does phone and virtual visits as well.
Once I started seeing her and found out I do not convert T4 to T3, I was put on both and now doing very well. I also had cortisol issues which are now resolved.
You said your old labs indicated high antibodies and normal TSH. Yes, this can happen. "Normal" is not always nomal though.

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Early in Hashimotos the hormone levels like TSH can be normal because not enough of the gland has been destroyed to reduce hormone production. However, some Drs will treat it, which helps patients feel better . Also, selenium supplements may lower antibody levels and slow gland tissue destruction and reduce inflammation involved. The cytokines produced by the inflammation cause fatigue. There are studies about this on the NIH website. I hope riefsny has gotten help by now!

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@slkanowitz

Early in Hashimotos the hormone levels like TSH can be normal because not enough of the gland has been destroyed to reduce hormone production. However, some Drs will treat it, which helps patients feel better . Also, selenium supplements may lower antibody levels and slow gland tissue destruction and reduce inflammation involved. The cytokines produced by the inflammation cause fatigue. There are studies about this on the NIH website. I hope riefsny has gotten help by now!

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The TSH usually goes from normal to high (Hyper) to low (Hypo). Not always, but from labs I have seen, it is very common. LDN is also a very good med to take to reduce inflammation and the antibody levels.

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I don’t know if you’re being treated by a physician, but if they didn’t tell you this, you should be told. You can have Hashimoto’s without having a Thyroid problem. Treating Hashimoto’s can be done by eliminating certain trigger foods like: gluten, dairy and soy. Those are 3 top triggers for me and I have eliminated them and feel so much better. No more body inflammation. It won’t hurt you to try that. It might be beneficial to you to have a food sensitivity test done as well, which will show you what foods are bothering you. You may already have a general idea. Good luck!

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@lkirnbauer

I don’t know if you’re being treated by a physician, but if they didn’t tell you this, you should be told. You can have Hashimoto’s without having a Thyroid problem. Treating Hashimoto’s can be done by eliminating certain trigger foods like: gluten, dairy and soy. Those are 3 top triggers for me and I have eliminated them and feel so much better. No more body inflammation. It won’t hurt you to try that. It might be beneficial to you to have a food sensitivity test done as well, which will show you what foods are bothering you. You may already have a general idea. Good luck!

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Great suggestion! I also avoid those foods, plus others. (I also have Celiac Disease) My Dr had me do the AIP (Auto Inflammatory Protocol) for 30 days. I did it for 93 because I felt so amazing! I was able to find out what foods caused issues and now avoid those. SO many things cause inflammation.

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@meeshodge

Great suggestion! I also avoid those foods, plus others. (I also have Celiac Disease) My Dr had me do the AIP (Auto Inflammatory Protocol) for 30 days. I did it for 93 because I felt so amazing! I was able to find out what foods caused issues and now avoid those. SO many things cause inflammation.

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I had a food sensitivity test done and found out exactly what I am sensitive to. I knew that when I ate pasta, bread, luncheon meats or any kind of sausage that I would get “puffed up”, “bloated” if you will, from eating it. Now I know why and am staying away from those foods. On top of that, I had Covid in December of 2022 and lost my taste and smell! Needless to say, I’ve been in my own “Personal Hell”! It does make staying away from foods I shouldn’t eat, easier, but I would give just about anything to get them back.

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@meeshodge

The TSH usually goes from normal to high (Hyper) to low (Hypo). Not always, but from labs I have seen, it is very common. LDN is also a very good med to take to reduce inflammation and the antibody levels.

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Thank you. A recent enfo told me because I had bulging eyes at the start, in my teens! That I had graves not hashimotos. I am now 70. lDN has a huge affect in reducing my dosage from 2.5 for years and years, to only needing 1 to be stable. (I take brand name synthroid. I couldn't ever be stable on generic. TSH of yes, 105 at one point. Then totally undetectable for 6 months when insurance made me use generic for 6 months.

My next good endo saved my from surgery by putting me on brand name telling me many have allergies to generics or very sensitive to not a stable dose in each pill. (Generics are allowed to be between 80% to 120% of the med. Exact brand name works for me. )

Thanks for writing this. I had not heard it before buy makes sense for me 60 years ago.

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Just FYI, TSH is low when you are hyperthyroid and high when hypo. Inverse relationship between TSH from pituitary and hormones from thyroid gland itself. Hashimotos can (not always), start out with a hyperthyroid phase lasting up to 2 years, often undetected, then turns to hypothyroid as the gland gets destroyed, a slow insidious process. Our bodies do weird things, especially our immune systems!

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