The T4 wars - Part 6 - Words mean nothing
I told my pleasant, new endo, the Happy Nigerian, that I felt fine, though I was suffering. My previous Endo, C Kurt Alexander of Muncie IN, had threatened to let me die before he would change my treatment. My GP showed me that she would play along with the Endo. I felt trapped with no choices: I had to comply and that meant stop telling them I had no hypo symptoms. I would then get the hormone I needed to live.
So I said I was fine and the new endo took another TSH test.
This time, the TSH test, taken one month after my 'normal' test, showed that I was hypo.
I laughed to myself when the doctor's nurse called up with the test results. She said the new endo was raising my dose of T4. Surely a patient's words do mean nothing. Telling a doc I was sick meant nothing. Telling a doc I was well meant nothing. Only the TSH test, which had proved to be something of a moving target, was to be believed.
I started to feel as if I were running out of time. I might not survive another six months in search of a perfect dose. I took the new dose of T4, but every day I also added another sliver of a leftover pill, adding what I guessed to be about 25 mgs more T4 than prescribed.
After two weeks on the new (and padded) dose of T4, my muscle pain was nearly gone. I was still in a fog and still felt as if I were walking through and breathing syrup. And now I started to be fearful about my next doctor's appointment. I had put myself at the high end of the accepted T4 dose. If my next TSH test showed a dip into the normal range, my T4 dose would be cut again. I would again be in agony, not just fog.
Now I had to ask: Is there anywhere else for me to go? Any other choices? Could I doctor shop or was there an alternative.
So I said I was fine and the new endo took another TSH test.
This time, the TSH test, taken one month after my 'normal' test, showed that I was hypo.
I laughed to myself when the doctor's nurse called up with the test results. She said the new endo was raising my dose of T4. Surely a patient's words do mean nothing. Telling a doc I was sick meant nothing. Telling a doc I was well meant nothing. Only the TSH test, which had proved to be something of a moving target, was to be believed.
I started to feel as if I were running out of time. I might not survive another six months in search of a perfect dose. I took the new dose of T4, but every day I also added another sliver of a leftover pill, adding what I guessed to be about 25 mgs more T4 than prescribed.
After two weeks on the new (and padded) dose of T4, my muscle pain was nearly gone. I was still in a fog and still felt as if I were walking through and breathing syrup. And now I started to be fearful about my next doctor's appointment. I had put myself at the high end of the accepted T4 dose. If my next TSH test showed a dip into the normal range, my T4 dose would be cut again. I would again be in agony, not just fog.
Now I had to ask: Is there anywhere else for me to go? Any other choices? Could I doctor shop or was there an alternative.
posted by Walker at 11:39 AM
2 Comments:
I finally opened up my blog list and started reading -- and wow! What an agonizing read. I have Prae for Jae up on my pop up calendar. It wasn't until recently did I note the misspelling of pray. A little humor for you ???
Anyway - I am so very sorry that you have been going through this. I await your next installment!
The next installment is where I treat myself with drugs from Mexico and Thailand.
I'm feeling better, thanks to me. Still have double vision, but we will see if it works itself out as I add more T3.
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