It could be true that your pharmacist is familiar with CFS.

Hah - just kidding, but that's what you asked, eh?

I think I know what you meant..

It is true that CFS is associated with adrenal failure. WHY is what I'd like to know. One doctor told me a tumor on the adrenal gland is the only reason he knew for my potassium being so low - but tests showed no tumor.

You might get your potassium checked, just in case, if you already haven't. Adrenals regulate that as well. Quite a few here have a deficiency and it's not something you can just pop a potassium supplement for. K is tricky.

Dr. Nancy Klimas at the University of Miami Medical School has been researching ME/CFS for a long time. One thing she finds consistently in her patients is a lowering of cortisol levels. She has been able to track the progression of flareups by monitoring cortisol levels.

Cortisol levels are elevated in patients suffering from Major Depressive Disorder, while in CFS patients they are sometimes so low that they register as zero on the assay.

I like to remind people that the proposed name to replace CFS some years back was NEIDS, which stands for NeuroEndocrine Immune Dysfunction Syndrome.

You could do saliva testing at home for Cortisol. Saliva is a good way to test for Cortisol. You usually do a sample first thing in morning, one around noon, one in the afternoon around 4pm and one at night.

HTH

After finally seeing a specialist in CFIDS, the very first thing they are checking for...is adrenal exhuastion, or adrenal "burnout". This is being done by saliva and urine testing.

A.M and P.M. cortisol levels differ. And if they are off to any significant degree a supplement may be needed.

CFIDS and adrenal function are absolutely connected according to this specialist and many others.

Can't hurt to have it checked. Adrenals are our "fight or flight" glands, and we with CFIDS are really needing those signals to be right!

Obviously there are many variables, but a really thorough check of the adrenals is part of a qualified doctor's exam for diagnosing CFIDS and the hideous exhaustion we suffer.

I've done a saliva test for cortisol several times. At one point my morning cortisol was waaay low, during which time I also had parasites and other stuff. The last test I had done, the morning level was still in the low-normal range. I currently take a small dose (.5 mg) of liothyronine each day. Sometimes it seems to help. More than that makes my heart beat faster than I like.

What kind of treatment is available for cortisol deficiency? Do you take cortisol?

A correction to my post above: I have been taking 5mcg per day of liothyronine (which is T3), not .5mg (sorry about that, my memory is a bit off sometimes!). Also this has to do with my thyroid.
I talked with my pharmacist today and she said the reason my heart beats faster when taking more that 5mcg of liothyronine is because I am not getting enough magnesium. I've read a lot about how low magnesium can affect energy levels. So I am bumping up my dose of mag to 1.2g per day and just took another 5mcg of liothyronine. So far no racing heart. She also recommended taking epsom salt baths to help my body to absorb the magnesium.

Glad you brought this subject up...I have Adrenal Insufficiency (AI) (you can also go under the Addison's support group..I am there). Basically, AI and/or Addison's is where your body does not produce the cortisol it needs to survive. I became this way, at least this is what we think ( although I have actually exhibited symptoms for a lot longer but was not diagnosed so maybe i have actually had this for years), because I was put on prednisone for my orbital Pseudo Tumor in Feb 2008. I mentioned the possibility of Adrenal Insufficiency to the eye "specialist" because I had emailed a fellow who became adrenally insufficent after steroid treatment for his pseudo tumor, but the eye dr said "You read too much" HA! Famous last words!
Really long story short...I have never been able to get off steroids and have to take them every day to survive.
Although I was diagnosed with CFS and fibromyalgia back in the 90's, I truly have never been THIS sick in my life!
You do not have to do a test twice a day so am not sure where you heard that.
What you SHOULD DO if you want to know if you are adrenally insufficient is get what is called a "Cort Stim test" done. That is what my GP did in his office and then referred me to an endocrinologist.
A cort stim test is basically where they take your blood, then inject you with (I think but am fuzzy at the moment) ACTH, a naturally ocurring hormone, and then take your blood again about 1 hour later to see how your body responds in production of cortisol. You sit and wait at the doctors...you don;t need to go back and forth.
There are other tests too..like the saliva one ( I have not done that one yet) and there is a 24 hour urine collection test ( that one I have done) but I think that is done IF you take the steroids like I do.
By the way, the steroid I take now is called "hydrocortisone" not the topical but oral. It is supposed to be the closest to that which the body produces normally or should produce normally. I currently have to take it 3 times a day.
AI messes with virtually everything in your body...from potassium, sodium, heart rate, sugar levels....you need cortisol to live and if your body can not produce it you need to supplement it. And you need more under stress or illness or surgery or crisis. I have syringes now ( I did not have them for a long time thanks to my 1st endocrinologist) and I have to carry one in my purse with injectible steroids for an emergency. I have not had to do any injections yet thank God but do have to wear a medical alert bracelet.
Ok I think this is enough out of me. I hope this has helped!

Dr. Christiane Northrup covered this on her recent PBS special on perimenopause. Adrenal function.

I've been slowly integrating her suggestions. I've been feeling 'better'. Just in the waiting-to-see-if-it-lasts mode. Even my GYN thought a lot of my CFS was undiagnosed perimeno. I'll never know now.

I also take Adrenergize (self guinea pig) and notice a difference in my energy level and sleep quality. It's an adaptagenic. If the body needs it, it uses it. If it doesn't, on the way out it goes or something.

And, I got better symptom relief YEARS AGO from my compounding pharmacist, than I did with regular docs. But, I don't have as many 'CFS side dishes' as others. But one of the two biggies I had, she helped me get rid of. She didn't know much about CFS but she did three week's worth of research before I had my consult with her almost ten years ago.

Best consult I ever had. She knows there is no cure. She knows it's symptom management sometimes. But she also knows what I can and cannot experiment with since I have Rx allergies. I trust her, more than I trust my doctor.

I am a more 'high functioning PWC' and I attribute that to my comp pharm. She made me aware of how things work, and what could aggravate. I still have crashes - but they don't last as long. The last one was brought on by dealing with 45 inches of snow. I managed to help with the first two storms.

The third one did me in for a good while. The house is dusty again. Inside house tasks are VERY behind again.

Her (comp pharm) supplement suggestions for my high cholesterol are also working, albeit more slowly. I can't take the statins.

My biggest dilemma in my almost 20 years of CFS is, every time I try the latest thing, it works - for three to six weeks. Then it stops working. Our chiropractor has four or five other CFS/Fibro patients that say the same thing.

And as to cortisol, I've never been able to get a doc to test me, hence my self guinea pigging with Adrenergize. (It's NOT a steriod.)

But - the thing to always remember with CFS/ME/FIBRO is:

What works for one person, may not work for another.

I might be tempted to take Adrenergize if I could find out what was in it. If it helps the cost is a bargain, however, the ingredient label shows two complexes. These are multi-ingredient brand names.

Then I found this:

This product contains glandular or organ material from animals. There have been concerns that animal materials might be obtained from diseased animals - remember, this is the internet.

That's all I could get before the info-keeper demanded I fork over $10 to get the complete list of ingredients.

Interesting words that came up in my search were golgi, monensin, ephedrine, ginsing.

Ok, I looked a bunch more and found this. It's a product description on a site selling Adrenergize.

**********
Clinical studies show high-quality extracts of Panax Korean ginseng and Eleuthero can restore vitality increase feelings of energy increase mental and physical performance and improve the body s response to stress. This formula also includes extracts of Chinese thoroughwax Wild yam curcuma turmeric and licorice. The active components of Chinese thoroughwax are compounds known as saikosaponins which apparently increase the release of cortisone and other hormones by the adrenal gland making them more potent licorice enhances the effects of Chinese thoroughwax. Serving Size - 1 capsule. Does Not Contain Sugar salt yeast wheat gluten corn soy dairy products artificial flavoring or preservatives.

http://www.health.goolian.com/index.php?case=product&proddb=9&pid=8158

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Eleuthero is also known as Siberian Ginsing.

It wasn't easy to find any real information about the ingredients in this product. I kind of resent it because had I just tried it, I would have gotten into trouble. I can't tolerate licorice. It makes my blood pressure skyrocket.

Ok, one more. Cortisol is the stress hormone, which leads me to ask: Since many of us can trace the beginning of our symptoms to a stressful situation (physical or mental) did the stress cause the cortisol drop or did the cortisol drop contribute to the stress?

@unduki
Like I said, I self guinea pigged with the Adrenergize.

I'm sending that page to my comp pharm, who was against me trying it anyway. She gave me 'the eyebrow'... But as can happen with PWCs, I was at my wits' end. None of that info is on the label. Besides, I'm post meno now and over the worst of it. I may not need it any longer.

She doesn't sell anything that they won't send her the chemistry for. She turns down products all the time. But I've got a low level high blood pressure, could be from this. Maybe will just take when I've 'pushed', but not all the time.

That was the most 'exotic' thing I've ever tried. I have sensitivities and Rx allergies that nix a lot of stuff that helps other PWCs.

I've been researching stuff that might help for the past 17 years. (The internet is so much easier than going to the library) and came up with my own mixture that helps me.

I tried each thing, one at a time mostly. We're all so different - It's almost like we each need out own, individual formula. This compounding pharmacist sounds interesting.