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.
Have you had a stimulation test to confirm the Addison's?
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?
Thanks so much for your response, rumpled! I haven't had the stim test recently. Trying to get it ordered. I don't remember the ACTH result, but I do remember the rheumatologist (who is my GP basically) saying that although it wasn't out of the normal range, it should have been much higher since the cortisol was so low. Basically I have my rheumie contacting my endo to try to push for the stim tests and whatever else would be beneficial. Not sure why the endo isn't more motivated to get to the bottom of this. I think he is stuck thinking it's secondary AI, which it clearly isn't. Oh well! So much for endo #5! lol!
Hopefully I can stabilize on the Florinef. Rheumie says to get on a dose and stay there. He was saying 0.1mg/day but I'm worried that's too much. I might try 0.05mg and see how I do on that. And I'll try to be a little more patient with the thyroid meds. I am hoping that by going back to Synthroid I'm not going to lose some of the improvements I had from NatureThroid. (I was growing back lots of hair!) :-)
Praying for some improvement in the fertility area as the thyroid improves. Actually we're fairly fertile for my age (not great but decent), but I just would lose every pregnancy, albeit really early, but it was still devastating. This month we are treating autoimmunity (& adrenals) with prednisone, and the antiphospholipids with Lovenox, so I feel like we have a chance this month! :-) Thanks so much again for your response!
FYI - pred is way way more powerful than hydrocortisone. You are not treating your adrenals - you are replacing them. So they are suppressed, and you will get the side effects from pred - and if you are trying to get pregnant, I would be worrying more about your bones with pred and pregnancy since pred eats bone and pregnancy leaches bone too. Pred lasts a long time - and so you end up taking doses that last a long time and don't allow the normal diurnal rhythm and your body to heal.
Florinef should be based on your renin levels, your sodium and potassium levels - not guess work, and basically, seasonally, it can change, but as much as you do, it may be too hard on your body. Summer you may need more to hold on to sodium - that is the function of the medication. So check out your tests and see what you need and take it. It also has a short half life so you can divide doses as well. If you need salt, take it. I have low BP and low sodium and high renin so I take a lot of salt in tablet form with the docs blessings.
Lots of great thoughts as always! I had renin checked once in July and it was like 500+. (sodium was low normal and potassium was high normal) Will ask to have them rechecked. As for the pred, I am so torn. :-( I can't bear the thought of losing another pregnancy. (I've had 2 miscarriages and 5 or 6 chemical pregnancies) The reproductive immunology specialist told me to take 30mg of pred. I know that is a ton! But now I am afraid to take much less than that, because I figure I'll have another pregnancy that lasts for a few days and then stops. Maybe I could try 20mg/day and see how that goes. That's still alot, I realize. I had tried the HC at 20, 30 & even 40mg/day and just didn't really notice much improvement. But perhaps something else was making me feel not good, like not enough thyroid meds or something!
Thanks for reminding me about the pred/bone issue. I haven't have a bone density scan in years. When I had one, I had above average density for my age. But I need to schedule another one of those soon, and a mammogram too. Good to know about the Florinef half-life. I think I will start taking half at night and half in the morning. I think in time I will get a better handle on all this. I wish my endo cared as much as my rheumie. Then I'd be doing great!
Thanks again so much for sharing your knowledge and support! Have a wonderful Thanksgiving holiday! :)
Pred is also going to totally suppress your immune system. Especially at that dose! 5mg is a normal replacement dose for AI - 30mg is something for illness like athsma, MG etc. If you are not taking pred for an illness you would be steroid induced Cushing's and that may in of itself make you lose the children - it is not healthy to have that much cortisol and a low immune system. I had Cushing's before my adrenals were removed to cure it - I know both sides. I only take 15-20mg HC to replace my cortisol. Hair studies of normal people show that 10-12mg is really all that is needed but there is some loss in taking replacements. Cortisol suppresses thyroid - and a lot of other hormones - so taking high amounts suppresses thyroid, and testosterone and dhea-s... it has a cascading effect.
Taking florinef at night may not help - afternoon is better - it does not last that long. Find another endo (I had to travel, and see lots of them) to get the right one - and I still am looking again. It is hard!
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