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Discussion Starter · #1 ·
Morning happy Wednesday. I had my thyroid out almost 2 years ago due to cancer that they found by accident and the doctors have yet to get any meds right. I have reacted badly to everything out there.

About 2 months ago I went off everything and have never felt better (well I mean I finally feel how I did before the surgery which is finally good and "normal"). The doctors and nurses don't understand what is going on with me or why I am not in the hospital or anything.

When I was on any medication and my tsh and other levels were "normal" I felt terrible - sluggish, non functioning weight gain etc. They just tested on Friday and my tsh was 50! And T4 was low range so I got this "this is getting dangerous" from the endo speech so the dr want s me back on medication and honestly I'm really reluctant since I feel completely fine and the thought of going back to nonfunctioning is not appealing. Anyone else have a clue or am I truly just weird and it's just my lot in life to play stump the endo? ;-)
 

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Oof. Sorry to join the choir, but you need to be back on medication. It can (and I mean this in a very, very long term way) lead to coma and eventually death. Yes, its extreme and yes it would take months and months, but that's the end result.

What meds were you on and what did your labs look like while you were on those meds?
 

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Discussion Starter · #3 ·
Hi Joplin. I have tried all the synthetics as well as the natural ones. My reactions have ranged from suicidal (on tirosint - omg not fun) to heart palps and massive chest pain (thought I was having a heart attack) and not being able to read/see clearly (all the natural ones) to no sleeping, not eating, gaining weight, and not being able to see to drive and anxeity (all the other synthetics such as Synthroid, Levoxyl, Levothroid, Unithroid as well as the straight T4/T3)

the meds had my levels (the tsh) low so like 5-12 depending on the drug and I felt terrible the lower that number is also. On one drug my numbers were like 28 and though I felt like crap I felt like less crap than the lower dosage of that drug which had the numbers at 12.

When I was off something I felt great and "normal" and they simply cannot figure out why. One dr said that there is a rare condition where there are thyroid like cells elsewhere in the body that produce though they don't think I have that. I know there was a tiny piece left after the 2nd surgery but they claim it isn't doing a thing as I was wondering was it producing something which is why I felt fine. It's just so odd and very very frustrating.
 

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Oh my gosh, your not alone. Believe TT patients are special cases. I know exactly how you feel, thought I would go nuts, cause medical professionals thought I was nuts. Everytime I would take hormone meds for a few day's, I felt incredibly worse, sometimes horrid ! regardless of brand. Everytime I stopped for a week or two, I felt normal again, even when my TSH was high !
 

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Discussion Starter · #7 ·
Really?! I was really feeling like I was the only one on the planet that was like this as that's the impression I was feeling from the doctors being so stumped! Were they able to finally get you feeling "normal" ?

I've never heard of TT and no one has even mentioned anything. I am going to look it up and see what I can find out!
 
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