Obviously we are "seeing" one - my partner via telehealth. I don't tolerate any steroids.
I don't think it's Addison, people with severe ME also have low ATCH and cortisol
But yeah I'll take it if I'll tolerate it.
This ist the whole problem of this thread.
I think my cortisol itself wasn't even that low last time, it is just getting lower.
My awakening response is there. But endo will measure again.
As already recommended, Vitamin B5 in high doses can help a little. I get days where the mornings are okay but on others I feel totally dead until the afternoon. I haven't yet worked out what helps, maybe it's a significant delay in effect but I suspect that B5 could be part of it. I take 1 tsp of Pantothenic acid powder, once a day but I could do with it multiple times I believe. I will have to try it at some point.
The pituitary is affected in anyone with "real" ME/Fibro and Cortisol is also affected as well as sex hormones and anything else released from the pituitary/hypothalamus. For decades I have used the TCM herb called Tu Si Zi (Cuscuta Chinensis/Dodder seed). Tests on animals has shown that it increases the weight and function of the pituitary gland. It has fertility enhancing effects and also anti cancer effects. It might turn you into a stud with the wind blowing in the right direction
. It can also help regulate the adrenal glands lowering anxiety which can be very calming as it treats the kidneys. The kidneys are hit hard by ME and the nervous system in the kidneys is affected which can get as far as reducing the adrenal gland function in advanced states. That can eventually cause Addisons disease. I was tested for that but on the day of the test I stopped taking Tu Si Zi and my short Synacthen test came back okay showing fairly high levels of cortisol. Best of all it treats the HPA axis which can help somewhat which is why I have used it for so long.
BTW Tu Si Zi can have constipating effects due to it being high in Tannins. However the Tannins are high in Bioavailable Quercetin. It is often taken with Gou Qi Zi frequently called Goji berries which it is boiled with. Goji berries can have a loosening effect on the bowel, especially when the berries are eaten but considerably less so when boiled. They are also fairly anti inflammatory. There are many positive effects of Tu Si Zi, there is a review article on the seeds on the web. It does seem to have beta blocking type effects and it does lower the pulse rate to much lower levels, similar to a highly trained athlete. My pulse was 49 bpm while taking it while athletes tend to be around the 60 mark.
Cuscuta chinensis Lam.: A systematic review on ethnopharmacology, phytochemistry and pharmacology of an important traditional herbal medicine - 2014 DOI: 10.1016/j.jep.2014.09.032
Plug the DOI into Sci-Hub for the full article. I don't think that the article on the web is full other than Sci-Hub because I have seen some articles which show significant parts but cut the paragraphs off. Therefore don't fall foul of that.
