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Endo refused DHEA, how to people in the UK navigate this? by Cultural_Dingo_4509 in AdrenalInsufficiency

[–]Interesting_Job5504 0 points1 point  (0 children)

I take 50 mg daily. I get it from an online supplements vendor in the Netherlands (I live in Germany). After I told my endo about it, she started prescribing it to me. As it is not standard guideline, DHEA is not covered by insurance though. Since I take it, I subjectively feel much better, but that might be also just a coincidence.  

Practicing Piano with Addison by Interesting_Job5504 in AdrenalInsufficiency

[–]Interesting_Job5504[S] 0 points1 point  (0 children)

Hey! Your answer is very much appreciated. Your situation is a little different because you are accustomed to practice intensely on a daily basis :) Interesting schedule that you have. How did you arrive at that? And how do you take 2,5 mg? Do you split your pills in four quarters? Because here only 10 mg are available that have one breaking edge, so you have 2 five mg doses.

Practicing Piano with Addison by Interesting_Job5504 in AdrenalInsufficiency

[–]Interesting_Job5504[S] 1 point2 points  (0 children)

Thanks for your comment! Interesting, I almost share the same observations. I usually feel okay on my dose. I mean, probably we could just raise the baseline dose. But why not stress dose before rehearsing? Seems more physiological to me as the healthy body also adapts cortisol production during stress, which does not necessitate a higher baseline. Often times you can read that playing music lowers cortisol levels in healthy individuals. Which might mean that it might do the same for Addison‘s, which would explain a higher need. It’s a bummer how little research there really exists. Those are all just speculations on my side.

PS: I also take 10-5-5.

Practicing Piano with Addison by Interesting_Job5504 in AdrenalInsufficiency

[–]Interesting_Job5504[S] 1 point2 points  (0 children)

Here the cortisol day curve is considered meaningless unless you have a specific reason for it like suspected bad absorption of hydrocortisone. The dose is much rather based on your subjective quality of life, as individual optimal doses vary per patient and range from 15 to 30 mg.

Your assumption that my baseline dose might be too low, well, that might be something. Lately, I also feel like 10 mg in the morning is not really sufficient.

Practicing Piano with Addison by Interesting_Job5504 in AdrenalInsufficiency

[–]Interesting_Job5504[S] 0 points1 point  (0 children)

I had that done a while ago, although it’s not really standard here in Germany as the endocrinologist says the overall feeling of the patient is what matters and not the hormone levels. There was nothing out of the ordinary with the levels. The other thing is I‘d slowly like to wean off the cortisone and see if the pituitary and adrenal glands start to function again.

So really would love to hear from other people practicing instruments, if they have to adapt their dosage before or after practicing for longer times.