Autoimmune diagnosis issues -Hashimotos Thyroiditis with normal TSH?

Posted by reifsny @reifsny, Jun 2 11:39am

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.

Interested in more discussions like this? Go to the Autoimmune Diseases group.

Hello @reifsny, Welcome to Connect. You will notice we added to your discussion title to let others know a little more about the discussion and bring in more members with experiences to share. Here's what I found on the topic:

"Having only the TPO antibodies present with normal TSH and free T4 levels means that your thyroid is functioning normally and you don't have hypothyroidism, but it does mean that you may have Hashimoto's disease. Remember that Hashimoto's doesn't always cause hypothyroidism." — How Hashimoto's Disease Is Diagnosed – Verywell Health: https://www.verywellhealth.com/how-to-test-for-hashimotos-disease-4159884

@sparshall and @taterjoy may have some experience or information to share on Hashimoto's disease and normal TSH.

Have you thought about seeking a second opinion at a teaching hospital or a major health facility?

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Can only say I was hypothyroid decades befor the seemingly sudden diagnosis of Hashimoto’s.
My hypothyroidism may have been caused by an extreme regimen of birth control pills. In 1966 they were 10x as strong as currently, causing strokes in young women. That year my gynecologist prescribed TRIPLE dosage, 2 BC pills daily, yes 60 pills per month, (!) non-stop for five months. He said this would cause the endometrioma to “slough off.” That did not work and
despite it I survived, but gained 50 pounds in that short time. Decades later, in a medical text book I came across the concept that the artificial flooding of ovarian steroids may have interfered with my thyroid gland. In hospital weight loss clinics I have met other women who had similar experiences. All of us knew our weights would never return to normal, no matter how desperately we tried. @raye

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My Mayo physician said to always have my TSH labs at Mayo for most consistent results. He does not believe my Hashimoto's disease diets for thyroiditis makes any difference, but, "keep doing whatever you are doing." https://www.medicalnewstoday.com/articles/321197.

I have discovered that if I meet all my nutrition requirements almost daily (not via pills), my TSH remains stable and in range while the TPOs are present but not high. Fatigue not present (until COVID on April 25, 2022), no hair loss, no constipation.

I've left the immune diets and I now use a vegan diet with fiber target of 60 grams daily. Beans 3 servings, Berries 1 serving, Other Fruits 3 servings, Cruciferous Veggies 1, Greens 2, Other Veggies 2, Flaxseeds 1, Nuts & Seeds 1, Herbs & Spices 1, Whole Grains 3, B12 daily supplement. In winter in Rochester MN, I use Vitamin D supplement. My most difficult target is the 3 servings of beans.

Sodium usually in the 35% daily requirement and potassium 65%. I use sugar as a treat from time to time such as a blizzard or cookie. It is easy to have a treat everyday so I like to avoid places that make them easily available. A doctor in 1995 told me it is OK to have a chocolate chip cookie once a week, "…but, Joe, one a day is excessive." I only drink water and decaf Nespresso. Most days sugar from fruits run about 100 grams.

Medical help has been terrific and I hope more and more physicians will help us with REAL life-style changes whenever possible.

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Hi @elimseoj, Welcome to Connect. Thanks for sharing your experience and what helps you. It certainly sounds like you have everything under control healthwise. I think you might be one of those patients that would enjoy learning about The Patient Revolution – https://patientrevolution.org/. I too like doctors offerring real life-style changes as an alternative to standard treatments whenever possible. I've only had a couple that I've met that have that emphasis but that's the fun in getting a new primary care doctor every two to three years.

Do you mind sharing what questions you were looking to get answered when you found Connect?

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@johnbishop

Hi @elimseoj, Welcome to Connect. Thanks for sharing your experience and what helps you. It certainly sounds like you have everything under control healthwise. I think you might be one of those patients that would enjoy learning about The Patient Revolution – https://patientrevolution.org/. I too like doctors offerring real life-style changes as an alternative to standard treatments whenever possible. I've only had a couple that I've met that have that emphasis but that's the fun in getting a new primary care doctor every two to three years.

Do you mind sharing what questions you were looking to get answered when you found Connect?

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Hi @johnbishop! Thanks for the link — I see it will take time to explore and was happy to see Sue Robins' tribute to Erin Gilmer.

I am far from having everything under control health wise and find that learning bits and pieces over the years makes choices available. Our physicians and other health care providers generally offer choices when asked. The problem is learning how much I don't know about healthy living and what questions to ask.

About 20 years ago I was diagnosed here with peripheral neuropathy . We don't know its cause, but pain medication was offered and education for taking care of my feet provided. I discovered that with protective shoes I tripped a great deal; I switched to barefoot walking. That helped me learn that there are way too many broken glass pieces in the most pristine looking neighborhoods. So I switched to water shoes with minimal insoles and cushioning for protection and solved the tripping problem; only desert "goat heads" are hazardous now. I declined the pain meds; if I keep moving my hands and feet, I seldom have pain that bothers me. Walking, occasionally, in my water shoes on gravel or on rough asphalt areas seems to help keep pain at bay.

I came to Connect because my wife is battling lung cancer. We came to Rochester in May 2021 for two weeks. They found lung cancer and we are still here a year later. We did something similar in 2007 when we stayed here for nine months when Mayo helped her to fight breast cancer — successfully.

Unlike 2007, we found Connect. It offers other topics besides her cancer and caretaker issues — this autoimmune being one. These topics, for me, are terrific for scanning and learning about questions that I would have no idea about asking. I decided to chime in on this one. I am glad I did because I have met a teeny bit of you!

In 2007 I relied on the libraries and Toastmasters. This time the caretaker role is much more time intensive and I find Connect a blessing – even though most days I just scan the update titles.

Why did you volunteer to be a mentor? I feel glad that you did.

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@elimseoj

Hi @johnbishop! Thanks for the link — I see it will take time to explore and was happy to see Sue Robins' tribute to Erin Gilmer.

I am far from having everything under control health wise and find that learning bits and pieces over the years makes choices available. Our physicians and other health care providers generally offer choices when asked. The problem is learning how much I don't know about healthy living and what questions to ask.

About 20 years ago I was diagnosed here with peripheral neuropathy . We don't know its cause, but pain medication was offered and education for taking care of my feet provided. I discovered that with protective shoes I tripped a great deal; I switched to barefoot walking. That helped me learn that there are way too many broken glass pieces in the most pristine looking neighborhoods. So I switched to water shoes with minimal insoles and cushioning for protection and solved the tripping problem; only desert "goat heads" are hazardous now. I declined the pain meds; if I keep moving my hands and feet, I seldom have pain that bothers me. Walking, occasionally, in my water shoes on gravel or on rough asphalt areas seems to help keep pain at bay.

I came to Connect because my wife is battling lung cancer. We came to Rochester in May 2021 for two weeks. They found lung cancer and we are still here a year later. We did something similar in 2007 when we stayed here for nine months when Mayo helped her to fight breast cancer — successfully.

Unlike 2007, we found Connect. It offers other topics besides her cancer and caretaker issues — this autoimmune being one. These topics, for me, are terrific for scanning and learning about questions that I would have no idea about asking. I decided to chime in on this one. I am glad I did because I have met a teeny bit of you!

In 2007 I relied on the libraries and Toastmasters. This time the caretaker role is much more time intensive and I find Connect a blessing – even though most days I just scan the update titles.

Why did you volunteer to be a mentor? I feel glad that you did.

Jump to this post

Hi @elimseoj, I'm glad that you found Connect also! I really love being part of Connect and especially enjoy helping others find information and relevant discussions. I think the biggest reason I volunteered to be a mentor is that it was a chance to give back. It helped me when I was searching for answers for my neuropathy and I remembered how I felt when I first joined, lost but still with hope.

Have you seen the Connect Spotlights? Here's my spotlight interview – https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/searching-for-answers-with-others-meet-johnbishop/. You can see other member spotlights on the Newsfeed tab on this page and other mentors on the Mentor tab – https://connect.mayoclinic.org/blog/about-connect/.

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Thanks, @johnbishop

I have found the people in your town not far from here are very friendly when we were getting things needed for our long-term stay via Facebook marketplace. We drove there at least twice.

Thanks for giving back as you do. Best wishes for every success as you battle your neuropathy.

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Kind of same here, i have Hashimotos but almost normal labs minus the T3 which is always below the range but the Endos do not beleive in testing that i tested myself, can't understand why not if this is the hormone that gives you the energy etc it is going to rt3 which means is not getting to my cells. They don't know much about Hashimoto you have to go to a Functional doctor, but a good one, not like i did went to one and paid $697,00 and after filling a questionaire and he giving me what it means and telling me to buy some supplements he never wrote again after Jan 24th, his name is Marc Ryan just in case you find him. You can take Selenium that helps lower the antibodies, fallow the Paleo AI diet, i lost 17 pounds without trying, although i did not need to loose i am thin, there are good sites on FB for ppl with this condition put Hashimoto's in the search bar. Good luck

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@khali

Kind of same here, i have Hashimotos but almost normal labs minus the T3 which is always below the range but the Endos do not beleive in testing that i tested myself, can't understand why not if this is the hormone that gives you the energy etc it is going to rt3 which means is not getting to my cells. They don't know much about Hashimoto you have to go to a Functional doctor, but a good one, not like i did went to one and paid $697,00 and after filling a questionaire and he giving me what it means and telling me to buy some supplements he never wrote again after Jan 24th, his name is Marc Ryan just in case you find him. You can take Selenium that helps lower the antibodies, fallow the Paleo AI diet, i lost 17 pounds without trying, although i did not need to loose i am thin, there are good sites on FB for ppl with this condition put Hashimoto's in the search bar. Good luck

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@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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@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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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

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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