Hospital experiences?

[Gingergrrl]

@Gingergrrl yes good idea, I will say that if I have to go in, thank you. Last time the doctors at least weren't dismissive of ME but were like "well there's no treatment for that, so.."

I've taken pregnenolone for bad PEM/crashes since I first had ME. I found it on reddit when I was first mild and it seemed quite useful as a PEM block/stabiliser for bad episodes, letting me rest more.

My endocrinologist supports me using it but the complete mechanism of how it works seems undetermined as of yet..

That is interesting and I just Googled Pregnenolone, and was trying to figure out how it compares to Hydrocortisone, but ended up more confused! When your endocrinologist orders blood-work, are you tested for "Pregnenolone" to see if your level is normal? I don't think my Endo has ever tested me for it (but he might have many years ago and I just don't remember).

At that time I thought it was adrenal crises but given my lack of symptom resolution with IV hydrocortisone last ER visit a few weeks ago it seems that this is not the case..

When you were having the symptoms that seemed to be an adrenal crisis, did the hospital test your ACTH & Cortisol levels before you got the IV Hydrocortisone?

I am stable for the moment so hopefully I will start to improve finally.. Fingers crossed..

I am glad to hear that you are feeling more stable at the moment (or that you were when you typed that on Mon). Are you still feeling better and did you end up going to the hospital?

 

[GlassCannonLife]

That is interesting and I just Googled Pregnenolone, and was trying to figure out how it compares to Hydrocortisone, but ended up more confused! When your endocrinologist orders blood-work, are you tested for "Pregnenolone" to see if your level is normal? I don't think my Endo has ever tested me for it (but he might have many years ago and I just don't remember).



When you were having the symptoms that seemed to be an adrenal crisis, did the hospital test your ACTH & Cortisol levels before you got the IV Hydrocortisone?



I am glad to hear that you are feeling more stable at the moment (or that you were when you typed that on Mon). Are you still feeling better and did you end up going to the hospital?

No, never been tested for blood levels of pregnenolone actually.. Not sure if it works through a range of ways, including directly as a neurosteroid, through metabolism into progesterone and allo-pregnanolone, dhea, and then also somewhat into adrenal and sex hormones.. Bit of a mess!

No they didn't test ACTH or cortisol as I had also had 40 mg hydrocortisone that morning already.

Feeling a tiiny bit better than when I posted haha so no I haven't gone in luckily! Have managed to drop pregnenolone to 650 mg from 700 that I had done for a week.. Currently day 3 at 650. A little rough but hopefully I can slowly keep going down.. A little worried that it's boost derives from GABA manipulation - don't want to have benzo style withdrawals from it - but no way of knowing for now..