One of the first things I noticed now that I was actually stably medicated was that I would get the afternoon ickies. This was happening before but the presumed hypoaldosteronism was by far the worse of the problems. Every afternoon I would start to get a scratchy throat, get foggy headed, have abdominal pain around my liver and stomach, and have what I later determined wre called athralgias-arthritus like aches in my hands, legs and feet. Don't get me wrong. This sucked but it was nothing like what I went through before. This went on for two weeks getting worse everyday. At first if I went running it would make me feel much better but by the end of the two weeks I felt like shit. I went back to the evil internet where I posted on a message board where a doc suggested adding a T3 dose in the PM. I didn't have any of that so instead I added a T4 dose. Magic! Taking 25 ug in the AM and 25 ug in the PM when I noticed the afternoon ickies starting made me feel much better.
This really does challange the idea that the T4 half life is seven days especially in a very hypothyroid patient. It seems that my body was eating up the AM dose and that left my poor crappy thyroid to pick up the slack in the PM. In the severely hypo patient the type 2 deiodinase in the brain and skeletal muscle is upregulated, whereas the type1 in the liver and kidneys is downregulated. The type 3 deiodinase which degrades the T4 is also downregulated. So likely in my case the brain and skeletal muscle ate all the T4 quickly leaving the rest of my body without any. Another very relevent fact is that the expression levels of these enzymes are regulated by T3, not T4, so it doesn't make biochemical or enzymatic sense to give a pateint T4 only. A combo T3/T4 treatment is a better idea-but try and convince some of the endos of that idea.
So after two weeks I started exhibiting many of the "normal" hypothyroid symptoms. I was constipated and felt really groggy and tired. It was all very lethargic though, nothing like the previous shaky weakness from the presumed hypoaldosteronism. I thought at first maybe I had messed up my circadian cycles taking the two doses so I started taking 50 ug in the AM only. I realized I was also in the PMS stage of my menstruel cycle and there are things I have yet to learn about thyroid binding globule and estrogen levels that may have also explained it. I felt better but started noticing the afternoon ickies returning so I took another 25 ug dose in the PM which made them go away.
So now I am up to 50 ug in the AM and 25 ug in the PM. My endo was very good about the dosage increase. Honestly he took it better than I expected. I tripled my dose between visits and he seems only a bit concerned. I feel like I am knowledgable enough about where my final dose will be and the debate about raisning the dose during treatment that I am comfortable changing things but he doesn't really know that.
The oddest thing is that every week sort of reminds me of some stretch of time in the past. I guess the exogenous T4 suppresses my TSH level. As the TSH is supressed, any T4/T3 production capability I might still have left is supressed. At this time my exogenous T4 is not enough to totally replace the amount my thyroid would make so I end up with a net deficiet of T4/T3. The last few weeks have been a little sluggish and a lot of muscle/ligament stiffness and pain. I thought it was ovulation but it has kept going. I would up my dose on my own but I did tell him I wouldn't do that again at least till we meet next month . poor endo..... So at any rate I am stepping through history physiology wise-back in 99 I felt like this for awhile, back in 2001 I remember this symptom. It is kinda funny.
I think these things will be ironed out in time however I am still a touch concerned by the origin of the presumed hypoaldosteronism. If it isn't adreanl it seems the other not so fun option is hyporenninc hypoaldosteronism due to kidney damage. My endo says that if this were the case my creatine levels would be messed up however my aldosterone levels also looked "okay" during some of the tests ran. 99% chance it is just an adaptation the the extreme hypoaldosteronism but for myself I like to understand the possibility that rarer more severe things may be there. My office mate says she would worry terribly if it was her but for me I would rather be aware of the possibilities and probibilities than hide my head in the ground.
We tested my TSH level in house back at the start of this mess. It came in right about 200 with a %CV of about 10%. The other day it was down to 7.8. Yippie, I am in the single digits!!
Things to be learned:
1) Do Not assume drs are always right. Question them and make suggestions. If thier egos can't take that you need to find a better dr.
2) No realm of medicine or science is fully explored. A textbook may give you answers 99% of the time but you still may have to thinkon your own and recognize a case that is outside the norm the remaining 1% of the time. The stuff in books is on a bellcurve. There are things in the extremities which will exhibit different patterns.
3) If your patient brings in a suggestion and you don't have a clue-maybe they are right. I know they lack a godlike MD but maybe they have some idea.
$)Drs need to spend more time listening. Cudos to my new endo. He is saintlike in is ability to listen and help.
That's about it. i guess my book is finished!
The next chapter will be TSH from 7.8 to 1! My guess is there will be some mention of T3 in addition to T4. Stay tuned!
