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Old 03-08-2006, 01:01 PM   #1
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Very high TSH - 183

Hi -
I'm new to this board and am looking for some assurance and/or advice. I was diagnosed about 5 years ago with hypothyroidism. I am an otherwise healthy, fit 34 year old male. Contrary to what I've read symptoms can be, I'm actually on the lighter side (5'10", 165lbs) and have a reasonable amount of energy, although lately it's been waining. Here's the thing - when I was first tested my TSH level was 225 (not a misprint). After several retests to make sure it was not a mistake I was put on 200mcg and have fluctuated between 175mcg and 200mcg ever since. Recently I got lazy about taking my medication due to a new insurance plan that makes getting prescriptions a hassle. When I finally got around to dealing with it (after about 2 weeks of no meds) my doc looked at my chart and realized that they'd been prescribing me way too much levothyroxine - my last blood test apparently showed almost no TSH, yet I was still taking 200mcg for almost a year. He wanted to retest me and readjust my dosage. Well, my results came back this morning and my TSH is back up to 183 after only about 2.5 weeks of no medicine. Based on the events chronicled here and a few other things, I don't have total faith that my doctor knows exactly what's going on. So my concerns/questions are these: does anyone know if such excessively high TSH numbers could be indicitave of something other than hypothyroidism that I should be tested for? I did see an endocronologist 5 years ago, but should I see another to be sure? Most importantly, what could the effects of too much levothyroxine be and/or too much TSH (I seem to be penduluming between these 2 scenarios)? Most of what I read just says to get TSH levels back to within a normal range and that that's all you can do. I guess I'm just looking for some assurance that I'm a) not facing some imminent danger due to high TSH and/or too much medication, and b) that my abnormally high TSH levels, when they occur, are not indicative of some other, bigger issue.

 
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Old 03-08-2006, 02:02 PM   #2
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Re: Very high TSH - 183

The only thing I can think of is a TSH secreting pituitary tumor or something unusual like that.

 
Old 03-08-2006, 02:34 PM   #3
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Similar situation.

I'm a 28 year old male that was recently diagnosed as hyperthyroid. I had 2 TSH tests that came back at 77 and 109. I asked my Endo about the implications of putting that much stress on your pituitary, and he said that it could lead to a pituitary tumor. He didn't seem very concerned about it, but if it's bothering you it's something you could have checked out.

Last edited by Kamperdawg; 03-08-2006 at 02:36 PM.

 
Old 03-08-2006, 02:43 PM   #4
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Re: Very high TSH - 183

hmm, well, 'tumor' is not exactly a word I want to hear, but I suppose I should be more aware, not less. As a side, it seems, from my limited observation on this board, that while a majority of posters (and sufferers of thyroid conditions?) seem to be women, it seems to be almost exclusively men who have off the chart TSH counts. Is there anything to this or am I just looking at too small of a sample?

 
Old 03-08-2006, 03:54 PM   #5
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Re: Very high TSH - 183

Hi Rickerus,

I believe the reason you'll find more females on this board is that a larger percentage of women will seek info on health conditions. I remember a large study done on this that concluded that women primarily use the Internet for health, family/child care, finance topics etc... Men use it for news, sports related topics, finance. In a nutshell that's what I think it boils down too. Also Internet aside, men often shy away from health issue and ignore them.

That's my two cents,
Lyse

 
Old 03-08-2006, 04:03 PM   #6
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Re: Very high TSH - 183

I think you're putting too much importance on the TSH. There's no "imminent danger" due to it, except for the damage that untreated hypothyroidism itself can do... and as long as it fell while you were taking levoT, it's doubtful you have a TSH-secreting pituitary tumor. You can put that out of your mind.

Did you ever in the 5 years you were taking 175-200 mcgs feel overmedicated? That really isn't an exhorbitant dose for a man, especially given the height of your TSH while unmedicated.

You see... TSH has no other use in the body except to spur the thyroid into action. The actual thyroid hormones are what do all the work, so they are the most important levels to pay attention to. They are what dosage should be based upon.

If you felt good on your 200 mcgs, it's because that dosage put your thyroid hormone levels into the spots that are best for you. If you felt at all "wired", with shaky hands, anxiety, sleeplessness, ravenous appetite with no weight gain - or with weight loss - etc., then your present doctor is right to think the dose was too high. But if you felt good, if I were you, I'd demand to know what he bases his opinion on before I'd let him lower it. I'd definitely want to know what he saw in the chart that makes him think the way he is.

I just noted in another post the other day my observation that the extremely high TSHs often belong to men... but not always. I think it's interesting, but not particularly significant. For various reasons, you may not feel as ill at 183 as someone else feels at 3. That's the way this condition is.

 
Old 03-08-2006, 04:29 PM   #7
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Re: Very high TSH - 183

Thanks midwest1 - all of your points are well taken, and in fact I don't really feel that bad at 183, which is why I think I'm going through this little freak out. My symptoms, or lack thereof, never really seem to completely jibe with other hypo sufferers, so I start thinking it might be something else. I did have the lack of energy, sleeplessness, etc that led me to get tested in the first place, but at the same time I am quite thin and rarely have had much of an appetite, before or while on the meds. I do occassionally get the wired feeling you alluded to, with sweats and difficulty concentrating, but I never equated that with medication, but rather figured it was just my general disposition.

I think for me the hardest part is knowing that I have this problem and accepting that its not that bad. When I think about diseases I automatically think about cancer or leukemia and about doomsday scenarios and want to start fighting it like crazy. With this I instinctively want to react that way, but then know that that would be overly dramatic, that this is something you just manage and deal with.

 
Old 03-08-2006, 07:49 PM   #8
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Re: Very high TSH - 183

Quote:
Originally Posted by MatthewsMom
Hi Rickerus,

I believe the reason you'll find more females on this board is that a larger percentage of women will seek info on health conditions. I remember a large study done on this that concluded that women primarily use the Internet for health, family/child care, finance topics etc... Men use it for news, sports related topics, finance. In a nutshell that's what I think it boils down too. Also Internet aside, men often shy away from health issue and ignore them.

That's my two cents,
Lyse

While it might be easy to paint men and women with such a broad brush, MatthewsMom, you may want to put more thought into the question and answer. The question asked is while many more women are diagnosed with hypothyroidism ("Approximately 1 in 50 women and 1 in 1000 men develop hyperthyroidism each year" according to The British United Provident Association, insurers of more than 8 million in 190 countries), most of the cases of extremely high TSH levels seem to be men. I don't know the answer to this. I would like to know if anyone else knows the answer.

I too could use male and female stereotypes to theorize why more women than men post on this board, but I'd have to overlook the ratio of women to men affected, and risk offending people with my assumptions. That hardly seems productive on a board where people come to learn more about their health.

I assume you meant no offense, but it seems you ignored the question to post irrelevant stereotypes.

 
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