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    Old 03-23-2004, 02:51 PM   #1
    Buwoku
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    Highest TSH Level You've Heard Of?

    hello, I just wanted to know what the highest TSH level all of you have heard of. I am mainly interested in this because I have all the symptoms of Hypothyroidism and that is what the test results said I have. My consern is not that the diagnosis is incorrect however, my consern is that it is actually right. Mine came in so high that the hospital called a specialist that ended up calling me at around 10PM. She said that mine was off the charts. She said it was 502 when the optimal is around 2. When I heard this I nearly passed out. She told me to go get more blood work done for other stuff but the results have not yet come back. So I just wanted to know what is the highest you have heard of so I can tell better where I am sitting at 502.

     
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    Old 03-23-2004, 03:00 PM   #2
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    Re: Highest TSH Level You've Heard Of?

    I have heard of a TSH that high or higher, most people however will feel like absolute crap if theres gets above 4 or 5, but you may not be as sensitive and it really depends on where your Free T3 and Free T4 are. Be sure when you get more testing that they check those free numbers because those are the active hormones your body has available for use and you NEED to know where they are, TSH is a poor indicator of actual thyroid function.

    Good luck.

     
    Old 03-23-2004, 03:13 PM   #3
    Buwoku
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    Re: Highest TSH Level You've Heard Of?

    Thank you for clearifying that, the tests I did were the T3 and T4 tests, and a number of others I don't quite remember. There were at least 13 tests marked down on the sheet. Thanks again!!!

     
    Old 03-23-2004, 06:35 PM   #4
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    Re: Highest TSH Level You've Heard Of?

    Quote:
    Originally Posted by Buwoku
    Thank you for clearifying that, the tests I did were the T3 and T4 tests, and a number of others I don't quite remember. There were at least 13 tests marked down on the sheet. Thanks again!!!
    Keep in mind there are several T3 and T4 tests, the ones you want are the "free" ones, may be called FT3 and FT4, the T4 total and T3 uptake, are bound and active hormones and do not tell you how much active you have available to use, so the free ones are the ones you want.


    Good luck!

     
    Old 03-23-2004, 09:49 PM   #5
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    Re: Highest TSH Level You've Heard Of?

    After my total thyroidectomy, I had to be off meds for 7 weeks to wait for my RAI. All I know is that my TSH was over 100 (they don't bother reading past 100 because its kinda pointless, which makes sense). At that time, I felt like absolute crap. I would sleep all day (up to 18 hours some days), and I was so irritable and mentally unaware of anything going on around me. Different times my family would worry about me because I would just blank out for hours at a time, a day would go by, and later they would talk to me and I wondered why they were home so early- when it was 10 at night. Now, I feel SO MUCH better, still have plenty of symptoms, but basically I am 'feeling' okay. And my TSH level is still above 100...so I also wondered how high it really got. I am wondering how I will be when it gets in the normal range...makes me wonder.

    blue

     
    Old 10-22-2007, 10:42 PM   #6
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    Red face Re: Highest TSH Level You've Heard Of?

    Good grief.... if my TSH goes to 10, I feel like death warmed over, my hair is falling out, skin is dry and scaly and my mind is like a buzz saw... I can't imagine being 100? Uffda!

    M

     
    Old 10-24-2007, 08:15 PM   #7
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    Re: Highest TSH Level You've Heard Of?

    This is such a strange thing - I had a TT 2 weeks ago, and had a malignant papillary cancer tumor removed the week before that. My TSH was over 10 on Monday of this week and I feel great. My TSH was .3 before my surgery.

    I asked my doctor today if that was normal, and he said that everyone is different. He had a patient with a TSH of 103 and they said they got "a little tired at the end of the day" - ??? Doctor didn't know how the guy got out of bed every day!

    Since I got my stitches out today, I'm going back to the gym tomorrow while I still feel good. I am telling myself that I could wake up some morning and feel terrible, if and when my TSH gets up (down?) to 20 or 30. I just want to get the RAI over with and get my life back to normal...

    PS good luck to you.

    Jeri in Texas

     
    Old 03-17-2008, 11:44 PM   #8
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    Re: Highest TSH Level You've Heard Of?

    [QUOTE=Buwoku;916544]hello, I just wanted to know what the highest TSH level all of you have heard of.]

    I was just tested with TSH of 613. Weird considering that I feel pretty good. I am mentally slower than ever before and physically must talk my muscles into moving, but they do move and I'll hike and I have an active retail job in a grocery store. I'm in my thirties and will start medication tomorrow. T3Free + T4Free are also low. My doc also wondered how I could sit in her office and speak to her sanely. I have a strong and healthy diet of 90% organics, green foods, and vitamins and minerals. I only drink teas and juices- no coffee, no soda pop. If I have sugar it is cane sugar, agave, stevia, or xylitol. Maybe this is why I feel pretty decent; I really do not know. I also use essential oils, receive massage and acupuncture.
    So, you are not alone. I figure if there are you and me then there are loads of others who haven't been tested. We're blessed that we have the access to good blood testing and smart science. I'll start on Armour tomorrow.
    I hope this helps you, it does me to know that you had an exceptionally high level too.
    Be Well.

     
    Old 07-29-2008, 07:37 AM   #9
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    Re: Highest TSH Level You've Heard Of?

    I was diagnosed in 1996 with Hashimoto's. My TSH was 1210.66. My T4 was 0.5. I felt like crap. I was 30. I think the onset must have been very insidious, because I explained away many things for a long time. I had been on Prozac for a year for the accompanying depression. When I came off the Prozac, I had an increase in tingling in my hands and feet. That brought me to the doctor when I was finally diagnosed. In addition to extreme fatigue, feeling cold, having yellow skin, a puffy face, coarse hair, and a changed voice (I remember feeling like talking used a LOT of energy), I had memory prolems, depression, anxiety, paranoia. One reason I waited so long to tell a doctor something was wrong was I was afraid of being called a hypochondriac. Ahhh, the irony. Anyway, here I am 12 years later. I try to remember what it was like to feel so sick so I can appreciate feeling healthy. The really fortunate thing about hypothyroidism is how simple the treatment is. I actually felt more tired initially with the treatment--I think it's hard for the body to "speed back up." But, definitely, you will feel better.

     
    Old 07-29-2008, 04:00 PM   #10
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    Re: Highest TSH Level You've Heard Of?

    I understand that tsh levels should be between 0.350 to 5.500, mine when I was diagnosed with hypo was 12.500, is that too high? now 2 months laters and on medication my numbers went down to 10.500, can somebody tell me how high is this?

     
    Old 07-29-2008, 04:21 PM   #11
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    Re: Highest TSH Level You've Heard Of?

    Quote:
    Originally Posted by obxcastaway View Post
    I was diagnosed in 1996 with Hashimoto's. My TSH was 1210.66. My T4 was 0.5. I felt like crap. I was 30. I think the onset must have been very insidious, because I explained away many things for a long time. I had been on Prozac for a year for the accompanying depression. When I came off the Prozac, I had an increase in tingling in my hands and feet. That brought me to the doctor when I was finally diagnosed. In addition to extreme fatigue, feeling cold, having yellow skin, a puffy face, coarse hair, and a changed voice (I remember feeling like talking used a LOT of energy), I had memory prolems, depression, anxiety, paranoia. One reason I waited so long to tell a doctor something was wrong was I was afraid of being called a hypochondriac. Ahhh, the irony. Anyway, here I am 12 years later. I try to remember what it was like to feel so sick so I can appreciate feeling healthy. The really fortunate thing about hypothyroidism is how simple the treatment is. I actually felt more tired initially with the treatment--I think it's hard for the body to "speed back up." But, definitely, you will feel better.
    Wow that is absolutely amazing! So good to hear that you got the treatment you needed and that you've pulled through it.
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    Old 07-29-2008, 04:29 PM   #12
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    Re: Highest TSH Level You've Heard Of?

    Wow, hats off to you with SUPER high TSH levels that have sought help and are getting better. I cannot imagine how difficult that must've been.

    I had a TT 4 weeks ago and have not been put on any meds as I'm awaiting RAI. Like you, Scoobagirl, I only have to be above 30 to have my treatment on the 4th. I'm curious to see what my lvls will be when they test me Friday. So far not feeling TOO bad, but it helps that I can stay at home and rest most of the day.

    Optimal TSH level should be 1, I believe, but there are lots of varying factors that have to do with the T3, T4 and free T3 T4 levels. Maybe someone with a little more experience with numbers can weigh in on this.
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    Old 07-30-2008, 03:18 AM   #13
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    Re: Highest TSH Level You've Heard Of?

    [QUOTE=azuroil;3491452]
    Quote:
    Originally Posted by Buwoku View Post
    hello, I just wanted to know what the highest TSH level all of you have heard of.]

    I was just tested with TSH of 613. Weird considering that I feel pretty good. I am mentally slower than ever before and physically must talk my muscles into moving, but they do move and I'll hike and I have an active retail job in a grocery store. I'm in my thirties and will start medication tomorrow. T3Free + T4Free are also low. My doc also wondered how I could sit in her office and speak to her sanely. I have a strong and healthy diet of 90% organics, green foods, and vitamins and minerals. I only drink teas and juices- no coffee, no soda pop. If I have sugar it is cane sugar, agave, stevia, or xylitol. Maybe this is why I feel pretty decent; I really do not know. I also use essential oils, receive massage and acupuncture.
    So, you are not alone. I figure if there are you and me then there are loads of others who haven't been tested. We're blessed that we have the access to good blood testing and smart science. I'll start on Armour tomorrow.
    I hope this helps you, it does me to know that you had an exceptionally high level too.
    Be Well.

    Hi, thank you for your experience.

     
    Old 07-30-2008, 07:01 AM   #14
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    Re: Highest TSH Level You've Heard Of?

    Quote:
    Originally Posted by arizo01 View Post
    I understand that tsh levels should be between 0.350 to 5.500, mine when I was diagnosed with hypo was 12.500, is that too high? now 2 months laters and on medication my numbers went down to 10.500, can somebody tell me how high is this?
    Way too high - it should be under 2. What kind of dosage are you on at the moment?

     
    Old 07-30-2008, 07:12 AM   #15
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    Re: Highest TSH Level You've Heard Of?

    My primary physician put me in 25mg and a month and a half later my massive hair shedding stopped and blood test showed it down to 10500 and she put me in 50mg, then when my biopsy was done my endo put me in 88mg which I didn't start yet, he said to finish my 30 pills of 50mg and start the first day of august with the 88mg. He gave me refills for 9 months but I have to have a blood test in september and who knows, maybe he'll change it again!

     
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