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Old 05-09-2006, 02:22 PM   #1
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TSH of 64.53 have questions

Hi....been a long time since I visited this board. I'm sure this is answered somewhere, but my brain and body are overly tired right now....

Anyway, they drew my blood, I didn't ask what the other levels were, but I knew my doc was concerned. They started me on .50 mcg and I have been on 2.0 and 3.0 (it leveled out with my last pregnancy...so I had to restart) I am not sure if it's related to stress...my mom died in august and I quit all my other meds for narcolepsy and arthritis....had dropped a lot of weight while she was sick....but shorlty after, I put on about 30 lbs in 3 months!!!!

Holy cow...literally! When I restarted my med regimen, I experienced something I've never had before when I began new thyroid meds....I was in a tremendous amount of pain...all my joints ached, my muscles were weak, I couldn't eat, I was throwing up and just felt like crap in general. It took over a week to subside.....has anyone else ever experienced this? Is it because my TSH was so high?

How often is a TSH that high? I know that when is was in the 9's my doc freaked out.....so when I got this result back I asked if the decimel was in the right spot!!! Now what?

Will I continue to gain weight at a fast rate? Any help would be appreciated!
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Old 05-10-2006, 10:22 AM   #2
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Re: TSH of 64.53 have questions

Does anyone have any ideas on this....even if you haven't seen TSH levels that high? This is the first time I've actually been concerned about my levels. ANY help would be appreciated.

Thanks
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Old 05-10-2006, 11:00 AM   #3
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Re: TSH of 64.53 have questions

I actually have had a thyroid that high, I recently had mine rechecked cause I was feeling generally awful also. I had experienced extreme fatigue, loss of appetite, vomiting, muscle aches, weak, all of that and I was told my TSH was 55 and then 3 weeks later it was 67. Since then I was diagnosed with Addison's disease, which is an auto immune disorder, not saying that that is what you have, but just sharing that I also had experienced a really high TSH and had to be referred to an endocrinologist for further evaluation and that is what else they found. Good luck

 
Old 05-10-2006, 11:36 AM   #4
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Re: TSH of 64.53 have questions

Having such a strong adverse reaction to thyroid hormone may have something to do with your overwhelming stress, which weakens the adrenal system. Strengthening the adrenals may help you to tolerate the thyroid treatment better.

I was whammied when I started treatment on Synthroid. My TSH was about 7 then, so I doubt extremely high TSH makes the difference. Synthroid just didn't agree with me, and when I started Armour, it was gentle and effective. No whammy.

No guarantees about weight. There are too many factors that go into excessive weight to know the answer for you or anyone else. Generally, when T4 and T3 levels are optimum for you, you'll be able to lose weight at the same rate you could before your thyroid went south.... and it can take some months before T4/T3 levels become "optimum".
Good luck.

 
Old 05-10-2006, 12:11 PM   #5
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Re: TSH of 64.53 have questions

Thanks. I have been on armour before. I took it as an added supplement to the syntrhoid because I seem to have a hard time converting T4 to T3 or visa versa, can't remember. I started to actually lose weight with adding that. I wasn't aware that it could be taken alone.

Does it seem to be more effective than the syntrhoid, even when used alone?

I just restarted the syntrhoid, so they want to wait about 6 weeks before rechecking the blood levels to see where I'm at.

I'm lucky in the fact that my doc listens to me and treats also based on symptomology, not just what the blood tests state.

Has anyone ever heard of such a high reading before and is there any known risk associated with such high levels?

Thanks
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Old 05-10-2006, 03:59 PM   #6
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sparkie HB User
Re: TSH of 64.53 have questions

Angel, I am certainly no expert, but I do recall reading on the internet while doing thyroid research that extremely high TSH levels are not necessarily "accurate". It has something to do with binding, and blah, blah, blah. Another test was recommended if such a high result should occur. I will try to see if I can find this article and post it on this site. However, it really doesn't change anything because the TSH is elevated anyway, thus, all those nasty symptoms.

 
Old 05-10-2006, 06:10 PM   #7
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Re: TSH of 64.53 have questions

Hypothyroid people aren't sick because their TSH is high. They're sick because their T4 and T3 are low.
Your extremely high TSH doesn't make you any sicker than someone with TSH of 5. Many are diagnosed with autoimmune hypoT with TSH even lower than that. Nearly all of the folks who come here with lab results report variable TSH levels, but they all have low T4 (and usually low T3) in common... those all-important levels are invariably below the center of their lab ranges. That's what causes their symptoms.

One active member here just reported a TSH of 160, I think. I've seen others around that level over the years.

 
Old 05-11-2006, 05:01 AM   #8
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Archie343 HB User
Re: TSH of 64.53 have questions

My experience supports what Midwest said. I felt awful with TSH in the 20s and about the same at 65. The pituitary's demands as reflected by the TSH numbers aren't causing problems, they are simply indicators; low T3 and T4 is what is making you feel bad.

 
Old 05-11-2006, 10:20 AM   #9
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Re: TSH of 64.53 have questions

Hi Angel,

That nasty phase may have indeed been an adrenal "stress reaction" to taking the T4. It wouldn't be a bad idea to ask you doc to run some tests for adrenal function. I would also be very cautious (go slooooow) with starting T3 meds like Armour or Cytomel, as these REALLY quick stress the adrenals.

Best wishes.

 
Old 05-11-2006, 01:10 PM   #10
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Angel77 HB User
Re: TSH of 64.53 have questions

Thank you for the help. Can anyone clue me in on the adrenal problems that can arise? Are they common with thyroid problems, or are they a different problem all of their own? I still don't have insurance, so blood work is expensive, and I can't afford a specialist.

What are some of the problems that can happen when adding armour? And can adrenals have to do with weight gain as well? I gained 30 lbs in 3 months and honestly feel like I can feel my body growing by the minute!! It's beginning to stress me out!

Thanks
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