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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@slkanowitz

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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Do you know that you can have Hashimoto’s without Hypothyroidism or Hyperthyroidism. I was diagnosed with both Hashimoto’s and Hypothyroidism in November of 2022. Contracted Covid in December of 2022 and lost my taste and smell. Never knew I had either of them until after having 18” of my colon removed due to severe diverticulitis and started gaining a lot of weight when I was watching my diet…had my Thyroid Levels checked and low and behold, high Hashimoto’s numbers at almost 600 when they’re suppose to be 0! I started on Synthroid and Cytomel initially and gradually weened off Cytomel as I became very jittery inside and also came down to a lower dose of Synthroid which is 100 mcg instead of 112. I am feeling better and have lost the weight.

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@slkanowitz

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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Correct! People think low TSH means HYPO and vice versa.

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@meeshodge

Correct! People think low TSH means HYPO and vice versa.

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Yes you can have the anti-thyroid antibodies but be eu thyroid meaning your hormone levels are normal so neither hypo or hyper at that point. That typically occurs early in the disease and eventually changes over the course of months or years

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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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I think they'll follow their Endo parameters and let me die

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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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I am unable to edit the above, but just realized I have a typo.
The above should read:
The TSH usually goes from normal to high TSH (HYPO) to low TSH (HYPER).

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As I mentioned in another post here, you probably have Hashimoto’s Thyroiditis. Your antibodies are high due to Hashimoto’s. My levels measured at almost 600 at one point and they’re suppose to be 0! I was off balance, felt like I was on a boat most of the time, walking crooked and easily felt off balance. I read a book called Root Cause (Hashimoto’s Thyroiditis) written by Izabella Wentz, PharmD, FASCP that was an eye opener! I suggest you order it and read it. I learned so much from it and feel like I have healed myself. I always knew that when I ate certain foods I would become bloated and now I know why, I have a food sensitivity to things like gluten, dairy and soy so I have eliminated all three. I also had 18” of my colon removed due to severe diverticulitis and found that after the surgery, my colon was very sensitive to many foods. I had a food sensitivity test done by a doctor and have several, which I now don’t eat any longer or eat sparingly. It’s a choice I have made for better health. I wish you so much luck and a healthy journey! Get the book!

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I have had her she motors since 2006. I was actually diagnosed around 2009. I lost a lot of my hair I had no eyebrows I had twitches all over my body. I extreme massive reflux poem in my hands were orange. I had every symptom except galacturia my primary care physician accuse me of being a Hypochondriac my TSH levels were always normal. I finally found A endocrinologist that believed me as when we discovered I had disease my acid reflux, significantly decreased soon after I started levothyroxine, Over the last couple of years, my reflux has returned. My My TFree 4 is normal my TFree 3 is right on the boarder of below normal my tsh is below normal, I’m starting to feel muscle weakness and acid reflux again. I could use some advice.
Thanks

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@swbw0812

I have had her she motors since 2006. I was actually diagnosed around 2009. I lost a lot of my hair I had no eyebrows I had twitches all over my body. I extreme massive reflux poem in my hands were orange. I had every symptom except galacturia my primary care physician accuse me of being a Hypochondriac my TSH levels were always normal. I finally found A endocrinologist that believed me as when we discovered I had disease my acid reflux, significantly decreased soon after I started levothyroxine, Over the last couple of years, my reflux has returned. My My TFree 4 is normal my TFree 3 is right on the boarder of below normal my tsh is below normal, I’m starting to feel muscle weakness and acid reflux again. I could use some advice.
Thanks

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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....

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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

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