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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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meeshodge | @meeshodge | Dec 9, 2024
In reply to @covidstinks2023 "God Bless You swbw0812. I was diagnosed with Hashimoto's in 2017. My TSH, T3 & T4..." + (show)
@covidstinks2023

God Bless You swbw0812. I was diagnosed with Hashimoto's in 2017. My TSH, T3 & T4 were also normal, but, I had all the symptoms of Hashimoto's Thyroiditis. My Thyroid antibody was around 147 with normal range being 0-0.9. That is how I was diagnosed due to this heightened level and my symptoms.

Hashimotos is an autoimmune disease. The doctor said in fact, I did not need to be on anything at this point since my TSH, T3 & T4 were normal. I have to go in every 3 months for bloodwork and an ultrasound of the thyroid. This is very important.

Hashimoto's is the precursor for Hypothyroidism, BUT, it doesn't always go into Hypothyroidism. I'm just understanding this more in the past few months. It's hard to understand it to be honest.

I was diagnosed last year with Hyperthyroidism which is Graves Disease. My TSH was off at this point. I am on Methimazole for this. I fluctuate back and forth with my symptoms and to be honest, it's very hard to treat with having Graves & Hashimoto's.

My Hashimoto's number has come down to the '40's now which means the inflammation has decreased compared to when I was first diagnosed with it. Try and get your doctor to listen to your SYMPTOMS versus your NUMBERS. I just had my Methimazole adjusted due to my symptoms of Graves Disease had increased.

COVID increased all of my thyroid symptoms greatly and also my acid reflux worsened after COVID. I had an endoscopy done to look at my esophagus and all looked normal. If I have any type of stomach upset, it affects the acid reflux. I alternate between 20 mg to 40 mg of Protonix for reflux....trying to wean myself off presently. I do take 20 mg of Pepcid AC at night to keep from having backup reflux. Weight loss, elevate the head of your bed, no tight clothing around your mid section and nothing to eat after 6 p.m. helps greatly. Eat small meals during the day.

Watch out for foods that trigger reflux. I can no longer eat raw onions, very little pineapple, green peppers, tomatoes, spicy food, sodas & very little coffee. I know....all the things you love, right?

Try and get your doctor to NOT just focus on your Thyroid numbers, but, stress what your symptoms are. If you need to get a 2nd opinion, then do so. Primary Doctors usually will not test all 3 of the Thyroid Markers being your TSH, T3 & T4. They rely a lot on the TSH level. An Endocrinologist checks all of your thyroid levels.

Please remember that just as our blood pressure goes up and down all day long, the thyroid fluctuates as well. Try and keep your stress level down as much as possible.

Praying for you right now for you to feel better. Blessings & Prayers....

Jump to this post

Thyroid testing should include: TSH, Free T3, Free T4, TGAB, Reverse T3 and TPO.
Ask to try LDN (Low Dose Naltrexone) It helps with inflammation.

REPLY
1 reply
autnchris | @autnchris | Dec 9, 2024

TPO 23.1
T3 uptake 0.26
Tsh reflex 0.811

No test results for TGAB Reverse T3

REPLY
meeshodge | @meeshodge | Dec 9, 2024
In reply to @autnchris "Me too. I have borderline low TSH, T4, T3, and I have a goiter and nodules..." + (show)
@autnchris

Me too. I have borderline low TSH, T4, T3, and I have a goiter and nodules on my thyroid and was told I cannot receive medication until my numbers are too low.
My test results are
TSH 0.6
T4 .76
T3 3.0
I have extreme fatigue daily, brain fog, forgetfulness and weight gain

Jump to this post

Do you have the range values for your results? Your TSH is actually perfect (borderline HYPER). Without being on thyroid meds, this is actually a good number.
Your Free T4 and Free T3 should be in the upper range.

REPLY
lkirnbauer | @lkirnbauer | Dec 9, 2024
In reply to @autnchris "Me too. I have borderline low TSH, T4, T3, and I have a goiter and nodules..." + (show)
@autnchris

Me too. I have borderline low TSH, T4, T3, and I have a goiter and nodules on my thyroid and was told I cannot receive medication until my numbers are too low.
My test results are
TSH 0.6
T4 .76
T3 3.0
I have extreme fatigue daily, brain fog, forgetfulness and weight gain

Jump to this post

I would suggest to you to see a different doctor. Yours obviously isn’t listening to you. You need to be on medication. I had hashimoto’s and hypothyroidism and I never knew it! I suddenly began gaining weight, feeling very tired and my ankles were swelling up and I have very bony ankles. I also began growing these “fat patches” I like to call them, on my butt, upper arms and legs (thighs). Not normal for me at all. I now take Synthroid 100 mcg and have my thyroid levels checked every 3 months to keep the medications in check. I have lost weight and no longer have those “fat patches” on my body. You need an Endocrinologist to help you with this as your doctor doesn’t seem to know what to do for you. Good luck!

REPLY
covidstinks2023 | @covidstinks2023 | Dec 9, 2024
In reply to @meeshodge "Thyroid testing should include: TSH, Free T3, Free T4, TGAB, Reverse T3 and TPO. Ask to..." + (show)
@meeshodge

Thyroid testing should include: TSH, Free T3, Free T4, TGAB, Reverse T3 and TPO.
Ask to try LDN (Low Dose Naltrexone) It helps with inflammation.

Jump to this post

meeshodge, They do all of these levels on me and more. Thank you for your kindness and suggestion, but I can't take LDN...it causes headaches. I wish I could tolerate it.

Blessings & Hugs....

REPLY
lkirnbauer | @lkirnbauer | Dec 10, 2024
In reply to @autnchris "Me too. I have borderline low TSH, T4, T3, and I have a goiter and nodules..." + (show)
@autnchris

Me too. I have borderline low TSH, T4, T3, and I have a goiter and nodules on my thyroid and was told I cannot receive medication until my numbers are too low.
My test results are
TSH 0.6
T4 .76
T3 3.0
I have extreme fatigue daily, brain fog, forgetfulness and weight gain

Jump to this post

It sounds like you have Hypothyroidism. You should be taking Synthroid or something similar. The next time you have a Thyroid blood panel run, ask your doctor to include a TPO Antibody test. That number should be as close to 0 as possible. When mine was tested 2 years ago, it was nearly 600! Tired was an understatement! Get tested! I was where you are and probably worse and now I’m not.

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blankablank | @blankablank | Mar 27 6:53pm
In reply to @dreaminasecond "I'm so sorry. Me too. But, my thyroid is very very hyper with Hasimotos. I'm so..." + (show)
@dreaminasecond

I'm so sorry. Me too. But, my thyroid is very very hyper with Hasimotos. I'm so tired. I went to 2 hospitals yesterday trying to get admitted to a psych ward. I want to die. They don't understand how sick I feel. I wanna die and nobody can take that right from me. I shouldn't have to live like a crazy animal. I'm sorry

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Girl you may have issues with your pitituary / hypothalamus that causes it not to send enough ACTH to your thyroid as well as adrenal glands causing you low TSH, low other level (T4 and T3 is way more important) and low cortisol!

I am investigating that. I have 2.8 though in TSH and have finally found a doctor in Sweden, willing to get me down to a lever closer to 1!

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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | Mar 27 9:55pm
In reply to @blankablank "Girl you may have issues with your pitituary / hypothalamus that causes it not to send..." + (show)
@blankablank

Girl you may have issues with your pitituary / hypothalamus that causes it not to send enough ACTH to your thyroid as well as adrenal glands causing you low TSH, low other level (T4 and T3 is way more important) and low cortisol!

I am investigating that. I have 2.8 though in TSH and have finally found a doctor in Sweden, willing to get me down to a lever closer to 1!

Jump to this post

@blankablank Welcome to Mayo Clinic Connect! I’m glad you found the site. And you are in Sweden? Welcome!

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lkirnbauer | @lkirnbauer | Mar 28 9:05am

I have already read and responded to your post, but I want to add that I also have Hashimoto’s with Hypothyroidism. I recently went from taking 100 mcg of Synthroid to 75 mcg and feeling good. If all you have is Hashimoto’s without a thyroid condition, try eliminating gluten, dairy and soy. I did and lost weight and bloat is gone. I also lost my taste and smell with Covid in 2022 and it’s March 2025 and I still don’t have it back. So giving up foods for me is not a problem as I can’t taste it anyway. Try it though, it will be a game changer. Also, I bought and read a book by a doctor Isabella Wentz, M.D. on Hashimoto’s. Great book and I learned a lot from it.

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yanina | @yanina | Mar 28 4:39pm

Before increasing the thyroid meds dose, check iron levels and entire water /fat soluble vitamins/minerals/amino acids panel including iodine the 24 urine test (not from blood). You can be low in Vit D, or Zink is common as well. (You levels should be near the top of the reference)
Antioxidants like resveratrol, Quercetin, Q10 (+vit c) and others for ATP production /Mito works miracle.
Nicotinamide riboside is better than just niacin try Cell Guard - NR.
ADB5 Plus (Biotics) include adrenal gland if further boost is needed.
I discovered I have genetic folate and vit d mutation so had to change the form which helped as well.
On top of that try fasting and eat 1 time per day in 8 hours window. I put on continues glucose monitor and noticed that I am becoming fatigue after the snack or meal (basically when my sugar rises - insulin resistance). So switching to ketones as my primarily fuel of energy helped my brain.
I also went off Cytomel because it was too strong and switched to NTD (Thyroid NP). It works more soft and doesn't cause tremor or heart rate rises.
Depends on the age you would want to keep your TSH lower than 1-2.

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