After recent tests (my 8am cortisol was like 1.5 and ACTH was also low), it appears that I have Addison's in addition to Hashi's. The mineralcorticoid deficiency thing had already been established back in July and had improved slightly with Florinef 0.1mg/day. I have virtually every symptom of Addison's including dark spots on my knees/elbows. I had also started some low dose HC (20mg/day) which helped a little. For the Hashi's/hypothyroid, I take 50mcg Synthroid. I also have lupus, fibromyalgia & antiphospholipid syndrome.
Recently after having several early pregnancy losses, the reproductive immunologist ran lots of tests and determined that my overactive immune system is the likely cause of the pregnancy losses and wants me on 30mg/day of Prednisone. (in addition to Heparin and IVIg) I am very hopeful for future pregnancies, as the success rate w/treatment for women like me is supposedly 80%! I also have to say that at the higher pred dose, I had more energy and started to feel like my old self. Don't worry. I know all about all of the side effects of high doses of pred. I have spent days reading about it. But I have no children yet, and having a baby is the most important thing in the world to me.
Here is the one issue that seems to always be such a problem for me: my body temperature. I can't seem to keep it up in the normal range for long. Usually upon waking (pre-ovul) it is around 97.2-97.4. Post-ovul, around 97.6-97.9. If it stayed consistently like that, I probably wouldn't worry about it. But this morning it was 96.8 (post-ovul). I've been up for two hours and it's still 96.8. Was thinking it's a hypothyroid thing & was considering very slowly trying to up the Synthroid. (I only switched back to Synthroid a couple wks ago after a few months of NatureThroid, so maybe I just haven't been back on it long enough?)
Has anyone gotten a handle on the low body temp and how best to try to keep it as close to normal as possible? Very often I can get close to 98.6 in the afternoons. (I drink ginger tea and take coconut oil.) But in the mornings (and especially the evenings) I can plummet to 96.5 or lower. Please don't tell me this is normal. I know for a fact it's not. I even feel worse when my temps are that low. Worse fatigue, weakness, cold intolerance, fuzzy thinking.
I have recently been reading about the connection of the thyroid to the adrenals, that if the adrenals aren't being adequately supported, the thyroid will down-regulate the metabolic rate of the body so as to not overwhelm the adrenals further. Unfortunately I was one of the patients who was first started on thyroid meds in April w/o treating adrenals, and it was just awful. (Felt better for a little while, then it stopped and I felt terrible.) I think it managed to wipe out the tiniest bit of adrenal function I had left. (And it didn't help that I had surgery in Aug while I was on 20mg/day pred and my surgeon forgot to give me any stress steroids!)
My second biggest problem is knowing how much Florinef to take and how much salt to eat and all that. Last weekend I got terrible edema. Thought I was going to pop! So stopped Florinef for a few days and even took OTC diuretics for a couple days. Feeling better now but worried if it will happen again. Can't really stay off Florinef all together (I don't think), because I usually end up going back to being severely dehydrated and getting OH and tachycardia. :( I read that at higher HC doses, Florinef is not necessary. Is the same true for higher pred doses?
Any way, thanks for listening and would love any tips on how to manage this thing. The body temp is the #1 concern in my mind, as I feel certain that the temps have to be reasonably close to normal in order to sustain a pregnancy. I know some of you are probably thinking it's not even smart to be trying to conceive until I have all this under better control. But I am doing tons better than I was, if you can believe that! AND I will be turning 43 in Feb, so I don't have the luxury of having any time to waste.
What is your ACTH?
As for the florinef/salt/tachy thing... florinef takes a while to kick in. Usually when one is swollen, you may find that if you drink more water (see, that whole swing thing actually means you need more) then your body will let go - edema means your body is trying to hold on. HC has a eensty bit of florinef - not enough to be a replacement. Are you being managed by an endo?
It usually takes about 6 weeks for a thyroid med change to be fully incorporated. I have thyroid and adrenal issues (as well as a lot more) and take all the meds - I don't see the conflict. Perhaps some of the questions in the fertility area may help too?