All Things Adrenals: supplements, cortisone, testing, tapering, etc.

toyfoof

Senior Member
Messages
594
Likes
2,814
Location
Sedona, AZ
I am wondering if it is more "adrenal fatigue" vs. "adrenal insufficiency"?
It could be. I remember he told me that if I Google it, I'll find Addison's, and I don't have Addison's, just something in between Addison's and normal. Hopefully I get a more specific answer after the DUTCH test.

That is good you don't have the autoantibodies
Indeed! Autoimmune issues run in my family -- you name an autoimmune disease, someone has it. Except me, it would seem, and I'm the sickest of us all (except my uncle with advanced Parkinson's). I have to admit that autoimmunity really confuses me; I understand the basic gist of it all but once you start going into treatments and measuring my head explodes. I feel like I should maybe be asking better questions of my doctors but for now I'll just let them focus on what they're doing.

I wonder if 15 mg is all you need (or do your numbers go out of range if not on the higher dose)?
Maybe. My numbers have always been "in range" but my symptoms are pure hypothyroid (except I don't gain weight). My core body temperature was typically around 95-96 until I started on Armour, and that brought it up to 96-97, and it's kind of stayed in that range despite increasing my dose. But I don't get the symptoms of too much thyroid (shakiness, palps, migraines worse than normal) when I go up, so my doctor thinks there is room to move around.
 
Messages
26
Likes
90
Yes, I am happy to do a reliable test and to do what it takes (stop supplements) ahead of time to give the most accurate result. And then hopefully have enough information to proceed with the right treatment which will hopefully help!
I keep my fingers crossed for you - the Dutch test sound very interesting and many hormones do get tested, so I am sure, it will be worth it. (I am from Europe and as far as I know there is nothing like the Dutch test available here.)


Yes, I've always had this circadian rhythm problem, since I was born. It made going to school difficult, and then later, work. I've always adjusted my life around it -- I have managed to usually find work-from-home jobs where I can sleep in till the very last minute, or later shift jobs when I was healthy enough to go in to a job. I envy morning people so much because they just naturally fit into the mainstream way of life (at least here in the States in a white collar world).

I do all the sleep hygiene things, have bright sun in my room every morning at 5:30 and even take the dog out in it (only to come back and collapse back in bed for several hours), use blue-light filtering software and glasses, only soft lights after sunset, etc. It helps a bit (it keeps me from tossing and turning for hours even with an Ambien) but nothing I've ever tried makes mornings easier for me. (Except coffee, which helps a smidge)

Wow, you are doing a lot - sorry it did not help that much. You probably have tried melatonin long ago, but it helps me sleep. Maybe hormone treatments help with cicardian issues. When my hormones were all over the place I had much more issues with sleeping etc than nowadays.


I am wondering if it is more "adrenal fatigue" vs. "adrenal insufficiency"? Once my tests showed secondary adrenal insufficiency (triggered by the 3.5 years on Cortef), my Endo said that I needed to wear a Medic Alert bracelet so it was known that I must be given Cortef to survive if I was in an accident and couldn't speak for myself. I already wore the bracelet due to anaphylaxis risk so I had a new one made. But if I ever get off the Cortef, the adrenal insufficiency will reverse since it is not primary like Addison's
With insufficiency it is absolutely crucial to get a bracelet or something like this, b/c you need high doses of Cortef in emergency situations - glad you have one. I really hope, it reverses, but I know some folks, who took over years (higher doses of) corticosteroides and although they tried very hard - sadly their adrenals did not recover anymore and there are now "secondary Addisonlike patients", when you understand what I mean. But 7.5mg of Cortef is not a huge dose, just take your time with the taper and right now it is probably best to just keep your dose... You will get there.

Have a good day everybody :)
 

Learner1

Administrator
Messages
3,617
Likes
6,403
Location
Pacific Northwest
It's wise to be careful with any herbal supplement unless you understand what it's doing. This site seems to indicate fodder seed has more of an impact on testosterone and make sexual function than anything to do with reregulating cortisol:

https://vitajing.com/blogs/education/so-what-are-the-side-effects-of-semen-cuscutae

Having had a hormone-driven cancer, I learned the hard way to be wary of manipulating hormones without a well-thought out plan.

This explains how Seriphos works. I have seen it work on people with both high or low cortisol, but with dysregulated circadian rhythms.
If you are a night owl, a supplement containing a cortisol-regulating nutrient called phosphorylated serine (brand name Seriphos, this is not the more readily available phosphotidyl serine), taken before dinner (approximately four-six hours before bedtime), should get you to sleep.

If you wake up between 2:00 and 4:00AM take Seriphos at bedtime (by 10:00PM), 4-6 hours before you would typically wake up in the early morning. If you have trouble getting to sleep and you wake up between 2:00 and 4:00AM, take one capsule before dinner and two by 10:00PM. Seriphos encourages your pituitary gland to stop sending the order to your adrenals for more cortisol production. After a month or so, this normalized message should be permanently re-programmed, and you should not need any more Seriphos. Caution: Do not take Seriphos for more than three months total. Take a break for at least 24 hours after each month’s use (as per bottle directions).

A second possible solution: A quicker-acting supplement called hydrolyzed casein or lactium (e.g., De-Stress by Biotics) has calming effects on the brain. It was originally researched in France. Take 75-150 mg. whenever your cortisol is elevated, day or night. It seems to work best if you are also taking Seriphos. Do not take it if you are milk intolerant. Holy Basil can also help.

Remedies for daytime mood disturbances caused by elevated cortisol: The same two supplements may be used to lower daytime cortisol levels. Take Seriphos (1-3) hours before your test shows abnormally high cortisol elevation. Or try lactium when your test shows that a cortisol elevation is occurring (you actually feel more agitated then).

Retest your middle-of-the-night, early morning, and/or bedtime cortisol again (whichever was abnormally elevated) in three months to see if your levels have dropped to normal.

From: https://www.juliarosscures.com/identifying-and-correcting-elevated-cortisol-levels/
As for adrenal fatigue, there is a lot of controversy around whether it's real or not. I remember reading everything I could on it, and i could never figure out if i was stage 3 in one system or stage six in another. It became obvious that my cortisol was low, likely because my immune system was so burdened by multiple infections I didn't realize were active.

My doctor convinced me to try compounded hydrocortisone (I learned all steroids contain milk, which I'm allergic to) and I've been taking it 2-3 times a day since, starting at 25mg a day (10-10-5) but lately I'm down to 15 (7.5-7.5). The ACTH stim test just showed my body doesn't respond and make cortisol as well as it should and still doesnt, so if you've already figured that out, and don't need to prove it to anyone, you could save the time and money.

That alone was not enough. Researchers have found many of us can be helped by pregnenolone, especially our brain function. Just 10mg is all I can take. I also take DHEA and tiny amounts of testosterone, estriol, and progesterone, which the DUTCH test was instrumental in helping us find the right balance. I habe to be very careful with hormones, but I wasn't making any, and these have vastly improved my quality of life.

As for thyroid, even if you dont have YPP or thyroglobulin antibodies, you might still want to have reverse T3 and free T3 and T4 checked. Reverse T3 can go high when your body is under stress and block use of T3, or T4 may by be converting properly to T3, all while your TSH is completely normal.
 

Gingergrrl

Senior Member
Messages
14,056
Likes
41,958
I keep my fingers crossed for you - the Dutch test sound very interesting and many hormones do get tested, so I am sure, it will be worth it. (I am from Europe and as far as I know there is nothing like the Dutch test available here.)
We are all crossing our fingers for you @toyfoof and waiting to hear about the future results of your Dutch test!

With insufficiency it is absolutely crucial to get a bracelet or something like this, b/c you need high doses of Cortef in emergency situations - glad you have one. I really hope, it reverses, but I know some folks, who took over years (higher doses of) corticosteroides and although they tried very hard - sadly their adrenals did not recover anymore and there are now "secondary Addisonlike patients", when you understand what I mean. But 7.5mg of Cortef is not a huge dose, just take your time with the taper and right now it is probably best to just keep your dose... You will get there.
Thanks and I definitely wear the Medic Alert bracelet which says: Adrenal Insufficiency: Needs Cortef, Anaphylaxis Risk, Dysautonomia, and Mastocytosis. I actually have MCAS (not mastocytosis) but my Mast Cell specialist told me that hospitals & ER's are not familiar with MCAS vs. Mastocytosis and if they see it on the bracelet, it gives them an idea of what to do and what to avoid (and tells them to call Medic Alert to get my specific packet). Now whether anyone will actually do any of this is a crap-shoot but it's better than nothing.

Edited to Add: In my case, I'd also like the bracelet to say to avoid all meds and anesthesias that are calcium channel blockers (but there is only so much room on the bracelet!) and that info is in my packet if someone were ever to call Medic Alert (if I was not able to speak for myself).

As for adrenal fatigue, there is a lot of controversy around whether it's real or not. I remember reading everything I could on it, and i could never figure out if i was stage 3 in one system or stage six in another.
I agree that "adrenal fatigue" is considered controversial with all kinds of different terms and measurements. In my case the adrenal insufficiency was induced by the 3.5 years on Cortef but it was part of a desperate attempt to control my allergic reactions in 2015 before I found my MCAS doctor. I regret starting on it but I completely understand why we did. I am just hoping to get off of it eventually.

The ACTH stim test just showed my body doesn't respond and make cortisol as well as it should and still doesnt, so if you've already figured that out, and don't need to prove it to anyone, you could save the time and money.
So would you say that the ACTH Stim test (in your opinion) would not add anything new or useful in my case? My MCAS doctor was the one who told me to ask my Endo if he thinks it would be beneficial to see what my adrenals are really doing at this point as I am doing the Cortef taper. I have not asked him about it yet b/c it is very low priority on my list and I have temporarily stopped the taper at 7.5 mg (my original dose was 15 mg so I have been able to cut it in half but then I got stuck at this dose).
 

Learner1

Administrator
Messages
3,617
Likes
6,403
Location
Pacific Northwest
So would you say that the ACTH Stim test (in your opinion) would not add anything new or useful in my case? My MCAS doctor was the one who told me to ask my Endo if he thinks it would be beneficial to see what my adrenals are really doing at this point as I am doing the Cortef taper.
I am not an endocrinologist, but my experience was that an endocrinologist couldn't identify an abnormal ACTH stim test result. I think you'd also need a CRH test and may be a glucagon stim test to really figure out whats going in.

Accordung to Kent Holtorf:
The ACTH stimulation test is the most commonly used test for diagnosing adrenal insufficiency. In this test, blood cortisol, urine cortisol, or both are measured before and after a synthetic form of adrenocorticotropic hormone (ACTH) is given by injection. ACTH is a hormone produced by the pituitary gland that stimulates the adrenal glands to produce cortisol.

The normal response after an ACTH injection is a rise in blood and urine cortisol levels. People with Addison’s disease or long-standing secondary adrenal insufficiency have little or no increase in cortisol levels.

When the response to the ACTH test is abnormal, a corticotropin-releasing hormone (CRH) stimulation test can help determine the cause of adrenal insufficiency. In this test, synthetic CRH is injected intravenously and blood cortisol is measured before and 30, 60, 90, and 120 minutes after the injection. People with secondary adrenal insufficiency have absent or delayed ACTH responses. CRH will not stimulate ACTH secretion if the pituitary is damaged, so an absent ACTH response points to the pituitary as the cause. A delayed ACTH response points to the hypothalamus as the cause.
I had 2 doctors interested in my growth hormone level so they did the glucagon stim test which was normal. I haven't had rhe CRH test but everything else has been abnormal so the CRH would be the last diagnostic.

I think the answer is still going to be to take the hormones as the alternative is to live life in a sleepy heap on the floor...

I feel like I'm living on the edge without a swell bracelet like yours, though... It didnt occurvyo me that I need one but you bring up some good points ..;)
 

Gingergrrl

Senior Member
Messages
14,056
Likes
41,958
I am not an endocrinologist, but my experience was that an endocrinologist couldn't identify an abnormal ACTH stim test result.
When I was in the hospital in 2014 (for cardiac tests), they ran the ACTH Stim test on me but the hospital totally effed it up and the Endo (in hospital) was useless. But this was before I started on Cortef mid 2015 so I think my adrenals were actually working normally at that time (but just sluggish or fatigued :xpem:) ... versus now I have secondary adrenal insufficiency from the Cortef :bang-head:

I think the answer is still going to be to take the hormones as the alternative is to live life in a sleepy heap on the floor...
In my last attempt to go lower than 7.5 mg per day, I was beyond a sleepy heap on the floor and was almost pre-conscious where I felt like I could slip into a coma. That is why I am so hesitant to try it again b/c it would mean that I can't function or drive.

I feel like I'm living on the edge without a swell bracelet like yours, though... It didnt occurvyo me that I need one but you bring up some good points ..;)
I can't truly say that the bracelet is swell ;) because I got the standard ugly one. But I did that b/c some of the fancier ones are actually very pretty but they look NOTHING like a Medic Alert bracelet and paramedics or doctors could easily miss what it is and just think it's a regular bracelet. So, if you do get one, I would recommend one of the standard ones. This is the one that I have:

1557533522415.png
 

toyfoof

Senior Member
Messages
594
Likes
2,814
Location
Sedona, AZ
I have spent the past week slowly tapering down from the three adrenal cortex capsules I take, to zero today. I've done completely fine, and even today I did sleep a bit more this morning after walking the dog, but was able to get out of bed and function normally, so I think the key was in tapering instead of quitting cold-turkey like I tried last month.

I will take the DUTCH text one week from tomorrow, after seven full days of being off the AC.

As for thyroid, even if you dont have YPP or thyroglobulin antibodies, you might still want to have reverse T3 and free T3 and T4 checked. Reverse T3 can go high when your body is under stress and block use of T3, or T4 may by be converting properly to T3, all while your TSH is completely normal.
My doctor regularly runs FT3 and FT4 tests, and it's my low-normal FT3 numbers, along with my hypo symptoms, that got me on the Armour. He doesn't seem to run RT3, which is strange to me (he has a standard lab slip that he just checks off, and the thyroid section doesn't even have RT3 listed). My TSH has always been "normal" which I think is why my doctors up till now have never looked further.
 

Gingergrrl

Senior Member
Messages
14,056
Likes
41,958
I have spent the past week slowly tapering down from the three adrenal cortex capsules I take, to zero today. I've done completely fine, and even today I did sleep a bit more this morning after walking the dog, but was able to get out of bed and function normally, so I think the key was in tapering instead of quitting cold-turkey like I tried last month.
Yay that is great news that you were able to taper off the adrenal cortex for your test!

I will take the DUTCH text one week from tomorrow, after seven full days of being off the AC.
:thumbsup:

If reverse T3 is not on your doctor's, he/she could write it in.
I agree and it would be good to know the number as a baseline. My Endo often writes in tests that are not on the standard form.
 

toyfoof

Senior Member
Messages
594
Likes
2,814
Location
Sedona, AZ
I am starting the DUTCH test today and getting ready to pee on my first paper. The collection times are 5pm and 10pm today, and waking and two hours after waking tomorrow, as well as if I get up to pee during the night.

I cannot have any liquids 2 hours prior to each collection, and I'm supposed to limit all liquids during this time. I drink about 2 liters of water each day (I live in the desert!) and I'm parched already and getting a headache. I am already daydreaming about 8am or whenever tomorrow, after I do the last strip, and I can gulp down a bottle of water.
 

Gingergrrl

Senior Member
Messages
14,056
Likes
41,958
I am starting the DUTCH test today and getting ready to pee on my first paper. The collection times are 5pm and 10pm today, and waking and two hours after waking tomorrow, as well as if I get up to pee during the night.
Good luck and I hope it all goes well.

I cannot have any liquids 2 hours prior to each collection, and I'm supposed to limit all liquids during this time. I drink about 2 liters of water each day (I live in the desert!) and I'm parched already and getting a headache. I am already daydreaming about 8am or whenever tomorrow, after I do the last strip, and I can gulp down a bottle of water.
I am the polar opposite of you and I do not do well with a lot of fluid. I will have to drink a LOT of fluid for upcoming colonoscopy (not scheduled yet but hopefully will be in June). The prep drink alone is 2 liters plus you have to drink extra clear liquids like broth, coconut water, apple juice, etc. I literally do not know how I am doing to do it :nervous:
 

Hope4

Desert of SW USA
Messages
470
Likes
1,390
@toyfoof I wish you success today. :). I don't know if this might help. When I can't have some water, I sometimes, very gently, bite my tongue to get saliva. I find it helps a bit.

God bless you with joy and strength and confidence and every thing good. :hug:
 

toyfoof

Senior Member
Messages
594
Likes
2,814
Location
Sedona, AZ
Thank you @Hope4 . I survived and am drinking copious amounts of water today!

I probably won’t get the test results until my doctor appointment at the end of June, and I’ll let you all know then how it turned out! I’m hopeful this will give me a plan to be able to get out of bed in the mornings.
 

Judee

Senior Member
Messages
580
Likes
1,357
Location
Wisconsin
I am not an endocrinologist, but my experience was that an endocrinologist couldn't identify an abnormal ACTH stim test result.
I have my first appointment this week Thursday with an endocrinologist. My new PCP said she wants the endo to test for adrenal fatigue/insufficiency. @Learner1, if not an endo, who else would diagnose this? Please advise me. I also need to know what to ask on Thursday. If you have any suggestions, I would appreciate it.
 

Learner1

Administrator
Messages
3,617
Likes
6,403
Location
Pacific Northwest
A functional medicine doctor, one trained by the Institute of Functional Neducne, Seeking Health, Bastyr University, or Datis Kharazzian , would be the most help. They look at the body as a system of systems, not the "stovepipes" of conventional medicineCould be a MD, ND, DC, DO, or ARNP. They not only could diagnose why a wrong, but why it went wrong so interventions can be prescribed to help normalize hormones.

Though there are enlightened endocrinologists, they are few and far between.

Tests that might be helpful are:

- a 24 hour saliva cortisol test
- a DUTCH test (dried urine test of comprehensive hormones)
- NeuroLab by Sanesco
- fasting ACTH, a cortisol panel and an ACTH stim test
- a glucagon stim test (for growth hormone done with HbA1C and cholesterol Cholesterol is needed to make most hormones
- Full thyrouf panel FT3, FT4, rT3, thyroglobulin and TPO antibodies and TSH
- possibly an MRI of your brain to see what your pituitary looks like (without gadolinium contrast)

Spot hormone trsting is pretty useless. You need to know what your body is doing through out the day. You don't need every single test on the list above, but depending on whst you find with something like a DUTCH and thyroid testing and ACTH, you can dig deeper if you need to. Pregnenolone has been mentioned by the ME/CFS researchers so trst it!

Best wishes!