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  • Very low TSH and free T4, swollen thyroid - even doc is baffled. Help!

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    Old 12-10-2008, 04:39 PM   #1
    baileybop62
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    Very low TSH and free T4, swollen thyroid - even doc is baffled. Help!

    I'm new to the boards and struggling to find out what's wrong with me. Any advice would be greatly apreciated.

    My throid has been swollen and tender since late September. (It's Dec 10 today). After five docs, an ENT finally diagnosed me with Hashimotos, but referring endo said bloodwork was normal. He retested, with the following results:

    TSH -.03 (dropped from .7 last week and .5 a month ago, so dropping fast)
    Free T4 - .03
    Sedimentation rate 34 (very high - indicates inflammation throughout body)

    Ultrasound showed normal results.

    The endo says he's completely surprised at my test results and at how fast my TSH and Free T4 are dropping. He thinks I "may have hyperthyroidism," but all my of my symptoms point to HYPO - exhaustion and sleeping a lot, hair loss, foggy thinking, poor memory, very heavy periods, and more. He's testing me for Cushing's, but I don't have the symptoms. I do, however, have PCOS.

    So I have very low TSH and Free T4, high sedimentation, normal ultrasound, but HypoT symptoms. Any ideas on what might be going on? And.. any suggestions for a good endo in the Atlanta area?

    Thanks so much! I'm really at a loss as to where to go next.

     
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    Old 12-10-2008, 07:58 PM   #2
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    Re: Very low TSH and free T4, swollen thyroid - even doc is baffled. Help!

    Are you on thyroid meds? I'm not an expert but sounds like they should be looking at your pituitary. Did they also check your Free T3?

     
    Old 12-11-2008, 06:25 AM   #3
    baileybop62
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    Re: Very low TSH and free T4, swollen thyroid - even doc is baffled. Help!

    Quote:
    Originally Posted by juner50 View Post
    Are you on thyroid meds? I'm not an expert but sounds like they should be looking at your pituitary. Did they also check your Free T3?
    Just got my bloodwork back yesterday, and the doctor is sending me for an iodione uptake test. He had originally told me on Monday that there was "nothing wrong with my thyroid," so he was really shocked when both my TSH and FT4 came back so low. After reading these boards and your response, it seems pretty clear that the pituitary might be an issue. I'm going to call him today. Thanks for your help!

     
    Old 12-11-2008, 07:06 AM   #4
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    Re: Very low TSH and free T4, swollen thyroid - even doc is baffled. Help!

    Subacute Thyroiditis?

     
    Old 12-11-2008, 07:13 AM   #5
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    Re: Very low TSH and free T4, swollen thyroid - even doc is baffled. Help!

    I agree with Mattie, with the high sed rate, it could be subacute thyroiditis, can take 3 months, or many more to cycle, from hyper, to hypo, and then back to normal again.

    If the uptake/scan comes back low, that would indicate thyroiditis.

     
    Old 12-12-2008, 07:00 AM   #6
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    Re: Very low TSH and free T4, swollen thyroid - even doc is baffled. Help!

    Thanks for your reply! So if it takes months to cycle, what does the doc do about meds? My doctor says I'm currently HyperT, and wants me to start beta-blockers. I'm so wiped out tired that I can't imagine being slowed down more! Any suggestions?

     
    Old 12-12-2008, 07:55 AM   #7
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    Re: Very low TSH and free T4, swollen thyroid - even doc is baffled. Help!

    I had a viral form of this like 15 years ago, with a top NYC doctor (real old school), I took a lot of advil to reduce the swelling of my thyroid, as well as the fever---that's how I found mine, with fever, my doctor didn't give me any medication at all, just let me ride it out, but I don't think beta blockers were big in those days.

    You have to wait for the scan results to see what it is first, but since I survived without medication (it took about 3-4 months), I'm sure others can too. Didn't feel great, but survived!

     
    Old 12-13-2008, 10:07 AM   #8
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    Re: Very low TSH and free T4, swollen thyroid - even doc is baffled. Help!

    Baileybop

    I haven't seen anyone like me, I have been combing through all of my paperwork in preperation of finding a new Endo, and my bloodwork in April this year was:
    TSH .12 (0.34 5.60)
    Thyroxine free .7 (.6 1.6)
    this was prior to any treatment. I hope that you get answers soon! I have a multi nodular goiter also, with cysts, and with all the thyroid meds I am on now, I am very Hypo now:
    Free T 4 0.5 (0.6 - 1.1)
    TSH 5.29 (0.34 - 5.60)
    Good luck and hope you feel better soon!
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    Old 12-13-2008, 11:30 AM   #9
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    Re: Very low TSH and free T4, swollen thyroid - even doc is baffled. Help!

    How is your b/p? I've had two major thyroiditis episodes & now have more or less chronic thyroiditis. I took Inderal during my major episodes plus aspirin which does a good good with the inflammation. I still take 2 aspirins a day depending on the swelling & pain.

    Fatigue is a big factor. I had a racing heart, chills, diarrhea, losing a lb a day no matter how much I ate. I could only sleep two hrs at a time. Fam

     
    Old 12-15-2008, 11:25 AM   #10
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    Re: Very low TSH and free T4, swollen thyroid - even doc is baffled. Help!

    Quote:
    Originally Posted by famnd View Post
    How is your b/p? I've had two major thyroiditis episodes & now have more or less chronic thyroiditis. I took Inderal during my major episodes plus aspirin which does a good good with the inflammation. I still take 2 aspirins a day depending on the swelling & pain.

    Fatigue is a big factor. I had a racing heart, chills, diarrhea, losing a lb a day no matter how much I ate. I could only sleep two hrs at a time. Fam


    Hi Fam,

    I've had the swollen/painful thyroid since September, but at least now I have an endo who is checking into things. I found out that my TSH was .03, and my Free T4 was high (2.7, I believe). So he's now diagnosed me with hyperthyroid. I have all the symptoms of hypo, though. I can definitely relate to the fatigue and chills, but I am sleeping like a baby and don't feel any anxiety or racing heart. Thankfully, the Advil is making the pain a little less.

    I keep watching the scales to see the weight go down, but not much yet. I'm hopeful! :0) With my PCOS, I have a lot of weight to lose, and would love to see the hyperT take it down some for me!

    Thanks for your response. Have a great week.

    Lisa

     
    Old 12-15-2008, 11:26 AM   #11
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    Re: Very low TSH and free T4, swollen thyroid - even doc is baffled. Help!

    Quote:
    Originally Posted by Reece View Post
    I had a viral form of this like 15 years ago, with a top NYC doctor (real old school), I took a lot of advil to reduce the swelling of my thyroid, as well as the fever---that's how I found mine, with fever, my doctor didn't give me any medication at all, just let me ride it out, but I don't think beta blockers were big in those days.

    You have to wait for the scan results to see what it is first, but since I survived without medication (it took about 3-4 months), I'm sure others can too. Didn't feel great, but survived!
    Thank you so much for tne encouragement! I've started regular Advil, and it seems to be helping a lot with the swelling and pain. I also started taking 1000 mg of Vitamin D, and I think it's helping my energey levels some. I'll post the scan results when I get them back.

    Thanks again!

     
    Old 01-08-2009, 08:12 PM   #12
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    Re: Very low TSH and free T4, swollen thyroid - even doc is baffled. Help!

    Are you on thyroid meds?

     
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