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Old 03-07-2003, 12:08 PM   #1
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Post Curious about your TSH levels

Hi,

I've browsed through several of the posts on here and keep seeing people posting their TSH levels and how high they were when diagnosed. I'm wondering what the highest anyone's has went and them still be able to function, just mostly out of curiosity but also because I am wondering if anyone's TSH reached the level mine did. I haven't ever ran across anyone who has.

I can't help wonder how I was still walking...why I wasn't comatose or even dead. My doctor asked the same questions...he showed my results to other doctors and none of them had ever seen those high numbers.I've often thought it was a mistake, but after several tests that showed results in the same range I know it wasn't.

The first time I had it tested my TSH was 78. I went on Armor Thyroid and things balanced out well. Of course I was at the time not well educated on the thyroid issues and one day when I felt fine, my doctor had moved and I ran out of my meds I quit taking them.

Some point later I felt like crap, consulted with a new doctor, had my thyroid levels tested and my TSH was 243!! I think had I went much longer I would not have made it...I don't see how I made it that long!
I was having panic attacks, was very depressed, had high cholesterol (over 300),had memory loss, felt really crappy..but I was still walking and talking!!

Now I can usually assess myself when my TSH is slightly elevated. Anyone else survived really high levels??

Tina

 
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Old 03-07-2003, 01:05 PM   #2
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TSH doesn't directly correlate with symptoms. I have read accounts of people with TSH over 20 who felt fine, but on the other hand there are people like me who were practically disabled with a TSH of only 2.6 at daignosis.

For the sake of comparison, I have spoken to peopl at another message board that I frequent who have had TSH tests in the 600-700 range. On the same message board the parents of a hypothyroid child once posted that her TSH was over 1400, but that with proper treatment, she returned to normal.

The lab results that more closely correlate with how you feel are he Free T3 and Free T4, but even those can be "normal" when you feel poorly.
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Old 04-23-2003, 09:18 AM   #3
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eyesrblu HB User
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My thryoid was at 983 when I started treatment. I am still trying to get it into the right range. I have read the proper range is from 1-4 and mine is at 5.8. I want it between the range that I have researched, not close to it.

 
Old 05-16-2003, 02:04 PM   #4
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SAFig HB User
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Wow, I feel alot better. I just got my TSH levels and they are at 255. I know it is VERY high, but now I know I am not alone. My doctor has put me on Synthroid and will go back to see him in 10 weeks.
I am not feeling too bad though. Really tired and some muscle aches- but that is it.
Anyone else on Synthroid? What can I expect over the next few weeks? Will I start to feel better or worse?

 
Old 05-18-2003, 12:58 PM   #5
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HI.
My TSH was 253.56 in 1993 when my thyroid stopped working after my second pregnancy. My doc told me that I should be in a coma or dead..they repeated the tests three times because no one had ever seen the numbers that high! I was functioning but just barely, it amazes me to think about what that little gland can do!
Take care,
Jodi

 
Old 05-20-2003, 11:35 AM   #6
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I was checking through all messages. I wanted to ask MEEP or anyone else who has had a TSH around 2.75 how they were diagnosed as hypo if that is is the normal range. MEEP had replied that she was almost disabled at 2.6. What was your Free T4 result? Mine is .74 and my hospital lab says the normal range is .77 - 1.61. I feel very terrible and have for over a year. They gave me a free t4 test a year ago and it was .99 so it has gone down. Any thoughts?

 
Old 05-20-2003, 11:49 AM   #7
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donna

My TSH was 2.2 in Oct. and 1.61 in April. All of my thyroid panel results fell in the normal range. My thyroid antibodies came back negative. On paper I appeared as normal, but I knew I wasn't (I even have friends who will attest to that! (Ha, Ha) My doctor had to get an ultrasound and I had a goiter and a nodule. I was diagnosed only because I kept insisting that I had a thyroid problem. I ruled out any other disease that had some of the symptoms. I ruled out CFS, Lupus, Anemia, Epstein Barr, ect.. I came in to my gps office with a highlighted list of all of the symptoms I had. I chronicled my basal body temps (which didn't impress him). I brought in everything I could get my hands on to prove to him that the TSH wasn't always the most accurate way to diagnose hypothyroidism. I was lucky, he believed me (maybe part of the reason was because I was so nervous speaking to him about this that I broke out in hives (something that has only happened about 3 times in my life). Again, another symptom!

Don't give up if everything comes back normal, you know your body and you know when something is wrong. Follow your instincts. Be sure to rule out everything else first so you have no-doubt!!

 
Old 05-20-2003, 09:55 PM   #8
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My 5 year old daughters TSH was 1758. And no, I did not forget a decimal point!

My own is considered normal at .92. However, my anitbodies are 127 (range 0-35). And I have oodles of symptoms!

 
Old 05-21-2003, 03:44 PM   #9
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My TSH was about 2.21 when I started armour. My body temperature hovered around 96.9 - 97.4 and I was more depressed than I had ever been in my life. I had gained 40 lbs in a year and was so tired all the time I could barely function to keep my job. My latest doctor finally said, "Look, keep track of your temp and how you feel. Increase the armour accordingly. THEN we'll look at the numbers."

So, I'l retest the TSH in about six weeks....as long as my present body temp remains. I now have a body temp of about 97.8 in the mornings and have the energy to do things. Also, the brain fog is gone.

I suspect when we retest that my TSH will be almost totally surpressed.

Oh, and with the last increase in dosage from 30 to 45 mg, I've started losing the weight.

Laura

 
Old 05-22-2003, 01:30 PM   #10
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Quote:
Originally posted by donna2.75:
I was checking through all messages. I wanted to ask MEEP or anyone else who has had a TSH around 2.75 how they were diagnosed as hypo if that is is the normal range. MEEP had replied that she was almost disabled at 2.6. What was your Free T4 result? Mine is .74 and my hospital lab says the normal range is .77 - 1.61. I feel very terrible and have for over a year. They gave me a free t4 test a year ago and it was .99 so it has gone down. Any thoughts?
Meep is a man, in this case... My TSH at Diagnosis was 2.6, Free T4 was "normal" also, but was low in the normal range. I think it was .9 in a range of .8-1.8, but I don't recall. My doctor took into account my borderline results (yes, some docs wisely believe that anything above 2 is suspect for hypothyroidism) and my numerous symptoms, and said "Yep, you appear hypothyroid."

With your Free T4 at the bottom of the lab range, it is very likely that you are experiencing symptoms, and that treatment would help you. I tend to feel my best when my Free T4 is 1.3 or higher (in a scale of .8-1.8) adn T3 is 3.8 or higher (in a scale of 2.3-4.2). This is regardless of what my TSH reads. Many others respond similarly.
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