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High tsh then 3 weeks later it's fine- can an decipher antibody test?

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danielle19733
danielle19733

So I've been having crazy symptoms such as occasional tingling in the extremities, rib cage pain and sensitive to touch, chest pain and sensitive to touch, sharp achey pains in front of thighs, shortness of breath, fatigue, swollen lymph nodes, ear aches, tension headaches, occasional ringing in the ears, occasional cold sensitivity (which is abnormal for me), tmj, bad neck aches that radiate to my shoulder and back, and I've always had issues losing weight and thin hair. Most of these symptoms have been going on for almost three months. About a month ago I went to the ER and had a chest scan and neck scan because the doctor suspected lymphoma but ultimately said my chest was clear and neck only had a few swollen nodes but basically told me to keep an eye on it. He said my tsh was high (7.26) so he suspected hypothyroidism. I went to an endo who pretty much told me she thought I had it or even hashimotos and my tests were normal -__-

However, my antibodies test was negative. I have heard that means you can have hashimotos? Is this true? I am crazy nervous because im convinced I have lymphoma. I see an ent in 3 days and I'm requesting a biopsy to be safe and we'll see what they say. I'm just so sick of not knowing what's going on.  Also, has anyone had these symptoms?

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2 Replies

  • MtViewCatherine
    MtViewCatherine danielle19733

    Posted

    Hi Danielle, your experience is pretty typical.

    The antibody test relies on a flair up or active immune response at the time of the test, so a negative does not rule out Hashimoto's. the antibody test has a 50% false negative.

    if your TSH was 7.26. You are absolutely hypothyroid. The two autoimmune diseases that cause hypothyroidism are Hashimoto's and Grave's disease. Grave's tends to have extremely high TSH, while Hashimoto's often shows mild or even no substantial variation from normal parameters. This is one reason Hashimoto's often takes decades to diagnose.

    Go to an endocrinologist and get a full thyroid blood panel done.

     

    • danielle19733
      danielle19733 MtViewCatherine

      Posted

      I went to an endo. She basically said that with my previous tsh test and all of my symptoms she believed I was hypo or hashis. My grandma also has hypo. However, she wanted to do more tests so I got another tsh, t3, antibody test, and tpo (I think?). And they came back normal except my anitbody tests was weird and came back in the negatives... I have to go back in 3 months and do more blood tests. I'm so frustrated. It's almost like I have flare ups or something. I'll feel healthy for like 2 weeks and then awful for 2 weeks. At the time of my blood tests I felt fine. So I guess she might think my thyroid is "sputtering"? Whatever that is. I can't wait 3 more months. I'm so frustrated 😞

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