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Are my cortisol levels bad? And how does this relate to methylation?

Messages
25
I took a Functional Adrenal Stress Profile from BioHealth Laboratory. The results were:

Cortisol (Morning): 10.7 (13.0 - 24.0)
Cortisol (Noon): 2.4 (5.0 - 8.0)
Cortisol (Evening): 1.1 (4.0 - 7.0)
Cortisol (Night): 0.34 (1.0 - 2.0)
DHEA-S (Avg): 13.38 (2.0 - 10.0)

So the Cortisol is low and the DHEA-S is high.

Doc said it was about as bad of a case of adrenal fatigue as he's seen, and put me on 30mg/day hydrocortisone, taken in 15/10/5 doses. Also Ashwagandha.
 
Messages
25
@JaimeS I've been taking it for at least 6 weeks.

First I was taking Gaia Herbs liquid capsules, which is an extract containing the equivalent of 2700mg dry herb. Twice a day, 5400mg/day.

I recently switched to Organic India capsules, which contains 400mg per capsule, 3x/day, so 1200mg/day.
 
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jimells

Senior Member
Messages
2,009
Location
northern Maine
It would be interesting to see the results of an ACTH Stimulation test:

1. blood draw for cortisol test
2. administer ACTH - it tells the adrenal glands to make more cortisol
3. 2nd blood draw for cortisol

I had this test a few years ago and the results suggested my adrenal glands work fine.
 

Aerose91

Senior Member
Messages
1,400
The first adrenal salivary test i ever did my numbers were like this with a much worse DHEA ratio.

Its pretty well known now that adrenal fatigue is a signaling problem from the hypothalamus rather than an adrenal gland issue. This does relate to methylation because its toxicity that can damage cell membranes and screw up signaling and in poor methylation our glutathione levels are low.

I know that methylation can put some stress on the HPA axis because of pushing toxins through and thus stress your already low cortisol. I think its best to get stable on the hydrocortisone then you can slowly start to titrate up methylation which should also help the AF
 
Messages
25
@jimells Thanks for the info! I'll keep that in mind as this progresses.

@Aerose91 That makes intuitive sense. That has been my idea all along, to get stable on the hydrocortisone until I can regain healthy functioning. When you say titrate up, though...I've been on 1400mg methylfolate for 2 months and haven't increased the dose.
 

Aerose91

Senior Member
Messages
1,400
@jimells Thanks for the info! I'll keep that in mind as this progresses.

@Aerose91 That makes intuitive sense. That has been my idea all along, to get stable on the hydrocortisone until I can regain healthy functioning. When you say titrate up, though...I've been on 1400mg methylfolate for 2 months and haven't increased the dose.
Its been a while since i was on hydrocortisone so i dont remember how long it takes to kind of build your levels up and become stable at that dose but i think it has a very short halflife. I would make sure you're there first before stepping up the mfolate again, at whatever rate you think is safe. Generally with these things the golden rule is to only change one thing at a time so if something changes you know what caused it.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
@JaimeS I've been taking it for at least 6 weeks.

First I was taking Gaia Herbs liquid capsules, which is an extract containing the equivalent of 2700mg dry herb. Twice a day, 5400mg/day.

I recently switched to Organic India capsules, which contains 400mg per capsule, 3x/day, so 1200mg/day.

I was mostly concerned as to whether you'd started it, yet. If you are and you're doing fine, that's great; and Gaia is a good company with a good-quality product. (I don't know as much about Organic India.) You were taking a high dose, but not a dramatically high one, if memory serves. The dose you are on now is on the lower end of effective. IOW, it all looks good. :)

Withania somnifera is serotinergic, so it's important to note that if you (or anyone else reading this) has had funny reactions to SSRIs or to 5-HTP, you should avoid taking it. I myself had a terrible reaction to it -- quite a surprise, since I'd taken it several times before I became ill, with no adverse effects. :( It's a seriously useful herb, and I felt regretful to expunge it from my list herbal remedies.

Not a doctor, not medical advice, blah-de-blah. ;)

-J
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
It would be interesting to see the results of an ACTH Stimulation test:

1. blood draw for cortisol test
2. administer ACTH - it tells the adrenal glands to make more cortisol
3. 2nd blood draw for cortisol

I had this test a few years ago and the results suggested my adrenal glands work fine.

Ditto. But then an insulin tolerance test showed it was my pituitary or hypothalamus that was screwy, instead.

-J
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
Ditto. But then an insulin tolerance test showed it was my pituitary or hypothalamus that was screwy, instead.

-J

That seems to be the part that many doctors leave out. After my ACTH stim test looked OK, the endocrinologist decided he was done, and I was simply exaggerating symptoms and looking for attention.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
That seems to be the part that many doctors leave out. After my ACTH stim test looked OK, the endocrinologist decided he was done, and I was simply exaggerating symptoms and looking for attention.

Yeaaaah. I had a pretty good endo for the ACTH stim test. She was able to say that the numbers didn't "look right" even if they were in range. Also, my response to increased cortisol is a big bucket of awful.

The tech administering the test could not believe I was exaggerating because she was the one who spotted it first. "What just happened? Don't move." Still, she was sure it was because she was drawing blood at first. When she fed me juice and I still looked like... whatever I'd looked like to concern her, she called up to endocrinology. No one picked up the phone. She called again five minutes later, after piling me with blankets -- I was shaking very hard at this point. I felt almost as bad for her -- here was a patient going through something she'd never seen before, she wasn't equipped to handle it, and no one would help her. She eventually carted me off to the ER. By then I was having trouble breathing.

While cortisol is a very good idea for some PWME, as Twisk mentioned in his latest article, PWME/CFS often have exaggerated reactions to glucocorticoids, and adverse reactions to corticoid therapy.

At HIGH doses, cortisol is an immunosuppressant. For people who have multiple infections and are primed to over-respond to glucocorticoids, exogenous corticoid administration -- or cortisol stimulation -- is an extraordinarily bad idea. Nevertheless, I had a second ACTH-stim test several months later, because they were really hoping to catch something. This time, they elevated my feet up, gave me buckets of water to drink, and piled blankets on me before I started. I still felt horrible, but it was much better this time. Finally, after the ITT test, even further down the line, a physician gave me a cortisol pill (f-cort) to try out. The same result, x 10. Then I was sure it was the cortisol itself that was the issue, rather than, say, the typical carrier used for ACTH injection or something.

I feel obliged to add that, while other PWME have had this or similar reactions, there are lots of people here who do quite well on cortisol replacement therapy. Which just goes to show that there are a lot of primum mobiles in this illness, and I think that depending on what 'gets you' here to ME, you can have wildly differing reactions to different meds.

From the Twisk article:

....HPA dysfunction in ME/CFS can manifest itself in reduced levels of stress hormones, e.g., cortisol, at specific moments of the day[199,200] and aberrant diurnal production of specific hormones, e.g., cortisol, cortisone and adrenocorticotropic hormone (ACTH)[201,202]; a blunted response to provocation, e.g., by insulin[203], ACTH[204] or CRH[78]; a (long-lasting) deviant response to psychological[205] or physical stress[205,206], and an enhanced sensitivity of the cellular immune system to glucocorticoids[207,208] and increased negative feedback of glucocorticoids to the HPA axis[209,210]. HPA axis dysfunction is not likely to be the primary cause of the illness, since HPA axis hypofunction, e.g., hypocortisolism, is only present in a subgroup of patients[200,211], HPA axis abnormalities manifest themselves at a later stage of the illness[212-214] and hydrocortisone/fludrocortisone seem to have limited[215] or adverse[216] effects.

Emphases mine. Though I do wonder. Like I said before, there are plenty of people who do quite well on corticoid replacement. I wonder if they have primary adrenal insufficiency rather than secondary, or if that matters at all...

-J
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
She eventually carted me off to the ER. By then I was having trouble breathing.

Yikes - that's pretty scary.

I think Twisk is correct that the HPA axis dysfunction is not the cause of the illness. (But what do I know? Not much)

I don't think I have a cortisol issue - I do have a problem with excess norepinephrine if I over-exert or stand up for too long. If I let the norepinephrine get out of control it seems to trigger a bad feedback loop where norepinephrine up-regulates metabolism, causing more exhaustion, which stimulates even more norepinephrine.

I speculate that my excess norepinephrine is compensation for inadequate energy at the cellular level (whatever that means specifically nobody seems to know for sure) and many of my symptoms are downstream effects of the norepinephrine. I say norepinephrine as opposed to epinephrine because the former has been found to be elevated in POTS research, while epinephrine remained at expected levels.
 

EMilo

Elizabethmilo.com
Messages
223
Location
Seattle, WA
Ditto. But then an insulin tolerance test showed it was my pituitary or hypothalamus that was screwy, instead.

-J

@JaimeS , can you please tell me more info about your ITT experience? I have been putting it off for a year because I'm so nervous. I've asked for experiences in many groups and nobody with ME/CFS or any similar illness seems to have had it. My fear is an adverse reaction -- a DANGEROUS reaction to the hypoglycemia: Being given too much insulin (I'm small and extremely sensitive to medications), causing too low blood sugar for too long, adverse reactions and long recovery, brain problems and, of course, prolonged bedbound-ness, coma, death etc.... I just don't know if the benefits outweigh the risks. Thank you!