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

[toyfoof]

This thread is a continuation of the discussion started in @Gingergrrl 's thread about her dad (which is thankfully now full of the good news that her dad is cancer free! Yay!), which diverted into a discussion about adrenals and treatments. Here is page 8 of the thread, where the conversation started, if you'd like to read back:

https://forums.phoenixrising.me/thr...-with-melanoma-tonight-need-info.75701/page-8

I was going to copy quotes from that thread and bring them over here, but time (and fatigue, natch) got away from me and it's gotten too long to try that. So this thread can be a new starting point for adrenal discussion!

Tagging the folks who were discussing adrenals: @Gingergrrl @YippeeKi YOW !! @LiLaLu @Binkie4

 

[toyfoof]

I'll start the discussion with my own situation.

I was diagnosed with "adrenal insufficiency" about 6 months ago and am taking an adrenal cortex (AC) supplement since. I've also been diagnosed with hypothyroid about 4 months ago and take 45mg Armour Thyroid. I noticed that the Armour helped with my fatigue -- it really made a nice difference and brought my bedbound days down from a couple per week to less than one per week -- but I never thought the AC was doing much.

My doctor wants me to take a new test, the Dutch test, which tests your urine over the course of 24 hours and measures adrenal function. My adrenal insufficiency was diagnosed with a saliva test, which he said is not as accurate. In order to take the Dutch test, I need to stop the AC for 7 days.

I went one day without the AC a couple weeks ago, and I crashed badly: sleep paralysis for several hours and unrelenting fatigue once I managed to wake up. Because I was traveling (flying) a couple days after, I promptly took the AC and decided to wait until I'm home (I am) and I have a week that I can afford to spend in bed. That will happen next week, because I've had my mom visiting, and a friend is visiting this week.

I'm very concerned about crashing so hard again. My neighbors are aware of what is happening and will help and walk my dog Clara and bring me food if necessary.

Depending on the results of the test, my doctor mentioned maybe adding progesterone, cortisone, or licorice root extract. The saliva tests showed that my cortisone is low in the morning and high at night (backwards from what it should be), which explains why I have such a hard time in the mornings and get my "second wind" (if we can ever be considered to have such a thing) in the evenings/night. An extra push in the mornings to help me get out of bed would be most welcome!

 

[LiLaLu]

@toyfoof

I know, it can be pretty scary to go off of hormones for testing purposes - I went through this myself several times and I empathize with you.
But there are no other options for reliable testing and it would not be a wise to start supplementing hormones without testing in the long run - e.g. risking "shrinking" adrenals. Saliva tests are indeed not as accurate.

The fact that you do have a second wind and have higher cortisol levels in the evening shows that your adrenals are at least working partially, but that you have a cicardian rhythm problem, which is common in CFS/ME patients. Maybe try and expose yourself to bright light as soon as your up and try limit blue light exposure in the evening to help with cicardian rhythm entrainment longterm.

I keep my fingers crossed for you - you will get through this and in the end you will have gained some knowledge.

 

[Gingergrrl]

This thread is a continuation of the discussion started in @Gingergrrl 's thread about her dad (which is thankfully now full of the good news that her dad is cancer free! Yay!), which diverted into a discussion about adrenals and treatments. Here is page 8 of the thread, where the conversation started, if you'd like to read back:

Thanks for starting the new thread and for tagging me

I was diagnosed with "adrenal insufficiency" about 6 months ago and am taking an adrenal cortex (AC) supplement since. I've also been diagnosed with hypothyroid about 4 months ago and take 45mg Armour Thyroid. I noticed that the Armour helped with my fatigue -- it really made a nice difference and brought my bedbound days down from a couple per week to less than one per week -- but I never thought the AC was doing much.

Were you diagnosed with "adrenal insufficiency" from the saliva test alone? Do you know if your doctor called it primary vs. secondary adrenal insufficiency (or another term)? My current adrenal insufficiency is considered secondary to Cortef and my Endo believes it will be reversible if I am ever able to fully get off of Cortef.

I also forgot, do you have Hashimoto's Disease (autoimmune thyroid) like me or regular (non autoimmune) hypothyroidism? I take 15 mg/day of Armour (and used to only take 7.5 mg) but I often do better with tiny doses of things. When I first started on Armour in Oct 2013 , it made an unbelievable difference in the fatigue that I was experiencing back then but it did nothing for my other symptoms (POTS, muscle weakness, etc), that continued to get worse and by Oct 2014 (one year later), I started to require using a wheelchair.

My doctor wants me to take a new test, the Dutch test, which tests your urine over the course of 24 hours and measures adrenal function.

I definitely want to hear more about the Dutch test when you do it. Are the results considered similar to the ACTH Stim test (or totally different)?

That will happen next week, because I've had my mom visiting, and a friend is visiting this week. I'm very concerned about crashing so hard again. My neighbors are aware of what is happening and will help and walk my dog Clara and bring me food if necessary.

Can you taper or are you stopping it abruptly? I'm glad that you will have help with Clara.

I know, it can be pretty scary to go off of hormones for testing purposes - I went through this myself several times and I empathize with you.

Same question... did you taper it or stop abruptly?

I keep my fingers crossed for you - you will get through this and in the end you will have gained some knowledge.

Likewise

 

[Rufous McKinney]

My doctor wants me to take a new test, the Dutch test, which tests your urine over the course of 24 hours and measures adrenal function

I just took a 24 hour urine test and just turned it in. In my case, I can hardly explain what the test is to reveal.

Dopamine was written there. The other three things I could not read, nor could the plebotamist. She sent me back to the doctor. Secret code numbers were written on the RX. I still could not read it.

I had meant to ask for a xerox copy, but: forgot. So I have no record of it.

Medicine: a great mystery.

So if all that is to check for adrenal function, then gosh gee I am impressed.

 

[Rufous McKinney]

which tests your urine over the course of 24 hours

I also messed up my test I fear. The Plebotamist told me what to do. (skip 4 am, then collect subsequent).

Well, I only PARTIALLY read the fine print on the label, forgot that over two weeks, THOUGHT I did it correctly, but in fact: have no collection after midnight.

so: my results will be drumroll:::::::: ? messed up?

 

[Carl]

Look at Tu Si Zi (dodder seed) for it's affect on the HPA axis and in particular helping TCM kidney energy which is what becomes disordered when the adrenal function starts to decline. Mood and anxiety go along with all of that and I find that Tu Si Zi makes my adrenal cortisol level closer to normal. I know when my cortisol level becomes abnormally high because I get cold hands and feet which is fairly rare when I am taking Tu Si Zi.

Also note that pituitary dysfunction is common in CFS and can show as (partially) empty sella ie pituitary destruction which can be seen on a number of threads on this forum. Along with what I suspect is also (partial) hypothalamus destruction. What amazes me is that I can find no research that has found this to be present. What I suspect is that hypothalamus dysfunction sits better with the psychology crowd and their wide influence than a truly recognizable physical sign which is harder to dismiss. What I know is that I would expect this to be present in the more serious cases where the infection has a larger biofilm area with a resulting larger amount of hypothalamus & pituitary destruction. I have both of these, partial pituitary/hypothalamus destruction.

Tu Si Zi has been shown in animal tests to increase the weight and function of the pituitary gland and also hypothalamus function which should go some way to make up for the portion destroyed. I have been using this herb for about 27 years. It has also help preserve my kidney function after about 42 years of T1 diabetes. My last test showed 90% kidney function which for 42years of T1 diabetes is very good despite having a family history (genetics) of circulatory disorders.

 

[LiLaLu]

Same question... did you taper it or stop abruptly?

I stopped my thyroid medication abruptly - Retesting was after one month (hell of a month though, wanted to stop several times) and I had to go below Cushing dose for ACTH Stim test for several weeks. I am taking prednisolone once a day, which is about 4 to 5 times more potent than hydrocortisone. (Not very happy I need it, but is helps with AI symptoms). My endo wanted to me to stop taking prednisolone for 24h before ACTH Stim test, so I took one tablet the morning before the tests - had the test the day after in the morning (it has to be done in the morning b/c otherwise results are not reliable) and took the next tablet afterwards.

Thank you @Carl for pointing out the pituitary issues in CFS!

 

[YippeeKi YOW !!]

@toyfoof
Thank you so much for tagging me in ..... will chime in when I have something useful to contribute.

 

[Rufous McKinney]

I have both of these, partial pituitary/hypothalamus destruction.

How do you know you have this physical damage? How would one determine that?

 

[Gingergrrl]

Dopamine was written there. The other three things I could not read, nor could the plebotamist. She sent me back to the doctor. Secret code numbers were written on the RX. I still could not read it.

I am wondering if you were being tested for catecholamines (Dopamine, Epinephrine, and Norepinephrine)?

So if all that is to check for adrenal function, then gosh gee I am impressed.

I am assuming it was not if it was a 24 hour urine test vs. the ACTH Stim test in which blood is drawn, you would receive an injection, and then blood drawn again at 30 min and 60 min. Actually, the blood draws can be done at different intervals (not always 30 and 60 min) but it would be something along those lines. Although Toyfoof was mentioning the Dutch test (which I think is a urine test?) so now I am not sure?!

I stopped my thyroid medication abruptly - Retesting was after one month (hell of a month though, wanted to stop several times) and I had to go below Cushing dose for ACTH Stim test for several weeks.

Wow, that must have been challenging!

My endo wanted to me to stop taking prednisolone for 24h before ACTH Stim test, so I took one tablet the morning before the tests - had the test the day after in the morning (it has to be done in the morning b/c otherwise results are not reliable) and took the next tablet afterwards.

Did the results of the ACTH Stim test provide info that was helpful to your doctors or change the course of your treatment?

 

[Rufous McKinney]

catecholamines (Dopamine, Epinephrine, and Norepinephrine)?

yes: it was that stuff (sorry, really really vague here lately)

 

[Learner1]

My doctor wants me to take a new test, the Dutch test, which tests your urine over the course of 24 hours and measures adrenal function.

The DUTCH test is great. I have done it twice snf it was the key to getting all my hormones balanced and reducing unpleasant symptoms. It also showed I could benefit from hydrocortisone. It measures melatonin, too.

Depending on the results of the test, my doctor mentioned maybe adding progesterone, cortisone, or licorice root extract. The saliva tests showed that my cortisone is low in the morning and high at night (backwards from what it should be), which explains why I have such a hard time in the mornings and get my "second wind" (if we can ever be considered to have such a thing) in the evenings/night. An extra push in the mornings to help me get out of bed would be most welcome!

You might look into Seriphos. It has been very helpful at reversing the backwards cortisol pattern, taken at night, before bed.

 

[LiLaLu]

@Gingergrrl I do not want to hijack @toyfoof 's thread as I am not familiar with the Dutch test. (BTW can somebody send me a link/description to the test?)

Did the results of the ACTH Stim test provide info that was helpful to your doctors or change the course of your treatment

Yes, we stopped prednisolone taper (my doctors wanted me off of it) and my endo discussed with my rheumatologist, if switching to Cortef would be a good idea (b/c normally with diminished adrenal function you would want to use Cortef over prednisone/prednisolone, but we decided to not risk a new flare and keeping me on prednisolone.)

 

[toyfoof]

BTW can somebody send me a link/description to the test?)

Here is the test I am taking: https://dutchtest.com/info-dutch-complete/

I received the test in the mail and it's about the size of a CD in a paper case. Very compact and well-done. I haven't looked through it in its entirety yet since it'll be more than a week before I'm ready to take it, but once I stop the adrenal cortex I'll look through to make sure there's nothing else I should be stopping.

The DUTCH test is great. I have done it twice snf it was the key to getting all my hormones balanced and reducing unpleasant symptoms. It also showed I could benefit from hydrocortisone. It measures melatonin, too.

Great to know! I'm hoping for some hormonal balancing myself. Did your adjustments help with your general fatigue? I'm really hoping to get out of bed more than about 7-8 hours per day (only to spend most of that on the couch).

You might look into Seriphos. It has been very helpful at reversing the backwards cortisol pattern, taken at night, before bed.

Thank you -- I will make a note of this and come back to it when I have the DUTCH test results.

 

[toyfoof]

Were you diagnosed with "adrenal insufficiency" from the saliva test alone? Do you know if your doctor called it primary vs. secondary adrenal insufficiency (or another term)?

I was diagnosed based on the saliva test alone. He didn't mention primary, just that my adrenals were not functioning as well as they could be which could be causing some of my fatigue. I'm hoping the DUTCH test might give me more details.

I also forgot, do you have Hashimoto's Disease (autoimmune thyroid) like me or regular (non autoimmune) hypothyroidism? I take 15 mg/day of Armour (and used to only take 7.5 mg) but I often do better with tiny doses of things. When I first started on Armour in Oct 2013 , it made an unbelievable difference in the fatigue that I was experiencing back then but it did nothing for my other symptoms (POTS, muscle weakness, etc), that continued to get worse and by Oct 2014 (one year later), I started to require using a wheelchair.

I don't have the antibodies, so we don't think I have Hashi's (though I was surprised, because my mom has Hashi's so we figured I would). I also saw a huge improvement in energy levels when I took the first 15mg, and we'd hoped that going up every few months would give me that same boost, but it hasn't. I haven't really noticed much improvement since the 15mg. Very disappointing, but still, that initial boost has made a difference to my daily energy levels.

And yes, it seems to help with the energy, but doesn't do anything in terms of pain, blood pressure, heart rate, POTS symptoms, etc.

I definitely want to hear more about the Dutch test when you do it. Are the results considered similar to the ACTH Stim test (or totally different)?

I've not heard of the ACTH Stim test. I posted a link to the DUTCH test above. I'll certainly update when I take the test and when I get the results.

Can you taper or are you stopping it abruptly?

I had stopped abruptly last time because I was in a hurry, but now I have more time (not trying to fit it into when I have insurance coverage) so I'm now slowly tapering down, with the goal to be at zero by Sunday and then take the test the following Sunday. Hopefully this will prevent another terrible crash.

 

[toyfoof]

Sorry I am all over the place in my replies here -- I finally have a chance to sit down and write out responses!

But there are no other options for reliable testing and it would not be a wise to start supplementing hormones without testing in the long run - e.g. risking "shrinking" adrenals. Saliva tests are indeed not as accurate.

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!

The fact that you do have a second wind and have higher cortisol levels in the evening shows that your adrenals are at least working partially, but that you have a cicardian rhythm problem, which is common in CFS/ME patients. Maybe try and expose yourself to bright light as soon as your up and try limit blue light exposure in the evening to help with cicardian rhythm entrainment longterm.

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)

 

[Gingergrrl]

Yes, we stopped prednisolone taper (my doctors wanted me off of it) and my endo discussed with my rheumatologist, if switching to Cortef would be a good idea (b/c normally with diminished adrenal function you would want to use Cortef over prednisone/prednisolone, but we decided to not risk a new flare and keeping me on prednisolone.)

Thanks and I am glad that the ACTH Stim test results added something useful to your treatment. I will ask my Endo if he thinks it would add anything in my case. For now, I remain at the 7.5 mg/day of Cortef and have not attempted to re-start the taper.

I was diagnosed based on the saliva test alone. He didn't mention primary, just that my adrenals were not functioning as well as they could be which could be causing some of my fatigue. I'm hoping the DUTCH test might give me more details.

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.

I don't have the antibodies, so we don't think I have Hashi's (though I was surprised, because my mom has Hashi's so we figured I would).

That is good you don't have the autoantibodies and I was told when I was diagnosed with Hashi's in Oct 2013 that it was the "gateway" to other autoimmune diseases and nothing could have been more true in my case. My antibodies were very high but are much lower now (but still positive).

I also saw a huge improvement in energy levels when I took the first 15mg, and we'd hoped that going up every few months would give me that same boost, but it hasn't. I haven't really noticed much improvement since the 15mg. Very disappointing, but still, that initial boost has made a difference to my daily energy levels.

I wonder if 15 mg is all you need (or do your numbers go out of range if not on the higher dose)?

And yes, it seems to help with the energy, but doesn't do anything in terms of pain, blood pressure, heart rate, POTS symptoms, etc.

I was the same and the Armour helped my extreme fatigue in 2013 but did nothing for POTS, heart rate, low BP, etc.

I had stopped abruptly last time because I was in a hurry, but now I have more time (not trying to fit it into when I have insurance coverage) so I'm now slowly tapering down, with the goal to be at zero by Sunday and then take the test the following Sunday. Hopefully this will prevent another terrible crash.

That makes sense and I hope it all goes smoothly.

 

[toyfoof]

I also messed up my test I fear. The Plebotamist told me what to do. (skip 4 am, then collect subsequent).

Well, I only PARTIALLY read the fine print on the label, forgot that over two weeks, THOUGHT I did it correctly, but in fact: have no collection after midnight.

so: my results will be drumroll:::::::: ? messed up?

I did something similar on my second saliva test -- I realized I'd done the timings wrong after I'd done all the spitting. But the results came back pretty much the same as the previous results, so hopefully these little errors won't totally mess up your results.

 

[toyfoof]

Look at Tu Si Zi (dodder seed) for it's affect on the HPA axis and in particular helping TCM kidney energy which is what becomes disordered when the adrenal function starts to decline. Mood and anxiety go along with all of that and I find that Tu Si Zi makes my adrenal cortisol level closer to normal. I know when my cortisol level becomes abnormally high because I get cold hands and feet which is fairly rare when I am taking Tu Si Zi.

Thanks, I will also add this to my list of things to look at after I get the DUTCH test results. I also have cold hands and feet, but I'm pretty sure my cortisol levels are low? Also my kidney tests always come back normal.