circular wrote:Back again alysson. So the ADH/osmolality tests were part of the biotoxin labs Dr. Ackerley runs. I'm not sure if others have also had this included. She said she can't tell one way or the other whether I have CIRS because of my borderline labs. I gave a summary of my visit with her here.
We got the biotoxin labs covered (at least my insurance told me ahead that they almost certainly would and I haven't gotten a bill yet) using the chronic fatigue code. The other two codes used were for hypothyroidism and menopausal states for the hormones.
I explained to my primary care doc, and a new one at that, that I'd seen a chronic fatigue specialist but she wasn't covered by my insurance so couldn't run the labs. I gave the new doc the long requisitions from Dr. Ackerley. The new doc covered Dr. Ackerly's info (name etc) with her own and away we went. I'm still a little nervous a bill will show up for the more eccentric labs, but so far so good. I took a reference number from the two calls prior with my insurance where I was assured it would most likely be covered if my doctor thought I needed it...
circular, I imagine it's a bit disappointing to not know whether you have CIRS after all that testing. The good news is that you don't have results that clearly say that you do. But I wonder where you go from here. I did read your post about your visit with Dr. Ackerley, but I will re-read it to see if you wrote about what's next.
Thanks for those diagnosis codes. I've used all three before, so they wouldn't surprise my insurance company if I use them again.
I hope your insurance does, indeed, cover all the biotoxin labs. Good luck!
Do you tend to have low blood pressure? I think maybe the reason my osmolality is low is all the water I have to drink to get my morning, afternoon and evening supplements down. So now I find I have to up the electrolytes to keep up. I can't say I grasp it all that well yet.
I know what you mean about getting up to pee and that being followed by insomnia. That's what happened to me for years and still does occasionally. One thing I have noticed is that when it happens my hamstrings and hip flexors are tight. I don't feel they are tight until I get up to stretch them. I've found that these muscles need to be relaxed for me to drift off again in a short time. I do much better if before I go to bed I heat my hamstrings with a heating pad to get them relaxed (I can't stretch too much because of the hypermobility problem). I heat my glutes then too and sometimes spend a few minutes with the pad under my back. It doesn't take long. The other non-supplement thing that helps is going back to sleep with earbuds and, usually, brain entrainment. I use this Brain Wave app on my phone and find that for me, rather than the sleep options, the Deep Relaxation one really helps me drop back off to sleep. There's one for anxiety that sometimes helps too.
I can have low blood pressure, but I'd say that nowadays, it's usually normal. But I still get lowish numbers sometimes.
That's interesting about your hamstrings and hip flexors. Mine can get tight, and I should stretch them every day. I'll experiment with stretching them before bed, though using a heating pad sounds a bit luxurious.
Funny you asked about what hormone targets I use. Countless times when I'm away from my computer I think 'I have to send alysson a PM and thank her for sending me those hormone targets'! Right now I'm not sure what my targets are, but I recall in the list you shared testosterone was pretty much as tolerated. I don't tolerate a lot of that so I pay attention to symptoms for it. I'm undecided about estrogen and progesterone and haven't taken the time to make up my mind. While focusing on so much else I guess I've just been glad I'm getting hormones. Doctor Gundry thought my estradiol was way high at 100.5. I think it was TheresaB who posted that Dr. Gundry said he disagrees with Dr. Bredesen on that because Dr. B is focused only on the brain wrt it while Dr. Gundry is looking outside the brain too. 100.5 is high for Dr. Bredesen too I think (?), but he wants it higher than Dr. Gundry. It would be interesting to hear more from Dr. Gundry's perspective. I need to go back to your PM and see what those targets were and remind myself where you got them
In my PM to you, I was quoting what Lilly wrote in that long thread about HRT in E4 women. She wrote about Dr. Trutt's recommendations for E4 women (post-menopausal, I assume). He is an expert in BHRT, and Lilly travels to see him in NYC. Here goes:
Estradiol: Correct (75 is where he wants us)
The other numbers are much harder to answer; data not as strong.
Progesterone: probably serum level above 5. (anywhere from 5-20 is ok; 20 is often too high for many women)
DHEA: 200 (average level for a 30 y.o. woman)
Pregnenolone: No one knows (though some claim to know). I just make sure it's not below normal range.
Testosterone: If using cream or oral, free testosterone in normal range. Where in normal range depends on the woman (is she getting oily skin, is libido too high or too low, is she feeling irritable, etc). If using pellets, we go by total testosterone.