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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@khali

hi, thanks for answering, no my Hashi is not under control, i do not take any thyroid meds since mostly of my labs are ok minus the t3 which is always below the range but the endos don't beleive in doing anything regarding your t3. I still feel horrible with the inner shakiness and last night could hardly sleep since this also affects my cardio system and it's very bad i felt like i was going to get the SVT ( taquichardia) again which it happens sometimes and it is very scary. I don't know what to do been to 11 endos and nobody been helpful. Very sad

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@khali You’ve seen 11 endocrinologists and no one really helps you? That’s not right! Were any doctors at university hospitals or major medical centers?
Can you call the clinic/doctor at John Hopkins Hospital and ask for some recommendations of doctors in NC?

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@becsbuddy

@khali You’ve seen 11 endocrinologists and no one really helps you? That’s not right! Were any doctors at university hospitals or major medical centers?
Can you call the clinic/doctor at John Hopkins Hospital and ask for some recommendations of doctors in NC?

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hi, yes beleive it or not, but i live in Puerto Rico and can't not get to John Hopkins and i am so dissappointed with all the endocrinologists that i really don't want another one to tell me the same that they don't beleive in testing t3 or rt3 etc which is the hormone that gives you the energy that your body needs etc... i also have test my adrenals in saliva, the 4 times test and they are fine. Now i am going to see a dentist to take my amalgams which can cause Mercury poisoning to see if this is what is giving me the inner shakinesss that is driving me insane, i'll try whatever to see if i can find the culprint of this condition. Thanks

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@khali - I understand how stressful it is for you not to get the proper care you need for your condition- especially since you don’t feel well.
As I understand it, Puerto Rico has a mixed quality of medical professionals- some good, some bad and some worse.
There is a University Hospital in San Juan - with a good reputation. They have a Faculty Practice Clinic where anyone can be seen. They seem to have all specialties, including Endocrinology.
You mention SVT- I was only aware about that happening with high thyroid hormones? Have you seen a Cardiologist?

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Yes, I have even done Echo and Holter , all fine I know the thyroid can cause this, have some info from PumMed, it's all a mystery my inner shakiness and very debilitating.

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@khali

hi, yes beleive it or not, but i live in Puerto Rico and can't not get to John Hopkins and i am so dissappointed with all the endocrinologists that i really don't want another one to tell me the same that they don't beleive in testing t3 or rt3 etc which is the hormone that gives you the energy that your body needs etc... i also have test my adrenals in saliva, the 4 times test and they are fine. Now i am going to see a dentist to take my amalgams which can cause Mercury poisoning to see if this is what is giving me the inner shakinesss that is driving me insane, i'll try whatever to see if i can find the culprint of this condition. Thanks

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@khali have you tried some virtual appointments with Johns Hopkins? Maybe the doctors who helped you would be willing to talk with you again and give you some help. Can you try that?

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@becsbuddy

@khali have you tried some virtual appointments with Johns Hopkins? Maybe the doctors who helped you would be willing to talk with you again and give you some help. Can you try that?

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Not good virtual appointments have done that

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@khali

Yes, I have even done Echo and Holter , all fine I know the thyroid can cause this, have some info from PumMed, it's all a mystery my inner shakiness and very debilitating.

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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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Go to a Functional Dr the Endos don't know how to treat Hashi. Go on a AI Paleo Diet, there are groups in FB, get informed

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@becsbuddy

@khali , i know that finding good doctors is hard. If you go to the Autoimmune Association, you can follow their directions for finding resources.
https://autoimmune.org/resource-center/finding-a-physician/

I can’t believe that a doctor expected you to pay $697k for his ‘expertise!’ Yikes
Do you feel like your Hashimoto’s is under control ? And you’re doing OK?

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Not really, some days better than others

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How did you rule out an effect of COVID or the COVID vaccines? The symptoms you're reporting are seen in COVID Long-Haulers and vaccine long-haulers. Many of us have elevated autoimmune antibodies after the COVID vaccines.

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