Friday Tidbits: DHEA and HGH

As a child I had normal human growth hormone...

In the past, I've described several tests that can help doctors, as well as patients with fibromyalgia and/or Chronic Fatigue Syndrome (CFIDS/ME/CFS), to better understand the medical problems that are all too common, yet may be overlooked.  Some tests, like the sed rate (Erythrocyte Sedimentation Rate), white blood cell count and thyroid hormone levels do not vary with age.  That is, a young adult and an octogenarian would be expected to have levels that fall within a certain range, regardless of age.  However, this isn't true for two very important hormones: DHEA and growth hormone (HGH).  

DHEA (mentioned before), also known as Dehyrdroepiandrosterone, is a natural hormone that is made by both men and women and is necessary for optimal body function.  It's made in the adrenal glands, which are glands that lay above each kidney.  If a person doesn't have enough DHEA, he/she is more prone to:

• infection, low energy
• decreased libido 
• muscle weakness 
• poor muscle tone. 

The highest levels occur, not surprisingly, when a person is between 20 and 30-years of age and the levels decrease as an individual ages.  A graph in the book, DHEA: A Practical Guide by Ray Sahelian, MD illustrates this very clearly. (Unfortunately, the book is out of print so why do I bring it up?  Because rheumatologists, endocrinologists and others who work with these hormones still love it!)  This is important because the DHEA level that is obtained for any given patient must be interpreted in the context of the sex and age of the patient.  

However, it's easy to misinterpret the DHEA level by referring to the normal range provided by the laboratory. The normal range encompasses the levels of DHEA from healthy individuals of all age groups.  For example, a forty-year-old woman should have a level of about 200 and an 80-year old woman should have a level of about 50.  Both values, i.e., 200 and 50, are in the normal range.  However, if a 40-year-old fibromyalgia and CFS sufferer has a level of 50, it may be in the normal range for the general population but certainly not the right level for the 40-year old.  This is an extremely important point as a patient may be incorrectly reassured that he/she does not have a DHEA problem when in fact the patient is dire need of DHEA supplementation. 

The same principal holds true for growth hormone.  This is a hormone that's made by the pituitary gland of the brain, typically during deep sleep.  (Ah! Therein lies the rub for the fibro and/or CFS patient: sleep deprivation!)  The highest levels are made by children.  Once they reach adult stature, they still need to produce this hormone, albeit in smaller quantities, in order for wound healing and normal metabolism to occur.  For an adult, the summary phrase for the role it plays might be "helps maintain tissues and organs throughout life."  Dr. Robert Bennett described growth hormone deficiency in fibromyalgia patients as early as 1992 in the journal, Arthritis and Rheumatism.  It is important to understand that a normal hormone secretion for a 40-year old is going to be a lot more than that of an 80-year old.  As in the above example, if a 40-year old has a level appropriate for an 80-year old, that patient has a REAL problem.

(The role of HGH level production has not been described in CFS/ME patients but many rheumatologists who deal with fibromayalgia patients also see HGH insufficiency in their CFS patients as well.  Mine certainly does.)

 Adult Growth Hormone deficiency can cause the metabolism to slow down, resulting in: 

• weight gain, particularly around the mid-section
• decreased stamina
• altered body composition (more fat, less lean muscle mass)
• muscle and bone growth (spine and disc erosion may occur)
• sugar and fat metabolism (slows down)
• possibly heart function
• many other unpleasant symptoms (including depression, anxiety, decreased sweating, thermoregulation, changes in memory - processing and attention included, social isolation)

Again, this deficiency may be overlooked if the test results are misinterpreted.  

Therefore, if you have fibro or CFS/ME then 

• have your DHEA level checked
• have your Growth Hormone level checked by getting a test for its byproduct known as IGF-1 -- insulin dependent growth factor-1, otherwise known as Somatomedin-C 
• make sure that the tests are interpreted correctly since both tests are dependent on the patient's age.

If deficiencies are identified and addressed, many symptoms will go away completely or become more manageable.  Believe it or not, DHEA deficiency or growth hormone deficiency are more common than thought and are eminently treatable. 

I'll address the reimbursement issues in a future post.

As always, hoping all are doing their best, only better.  Ciao and paka!


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Lupus & DHEA

About four weeks ago, I wrote a post about hormone deficiencies in fibromyalgia, specifically Growth Hormone and DHEA (Dehydroepiandrosterone).  I made a point of mentioning that levels of these hormones, or their by-products, are usually measured by blood tests and that these hormones are prescribed when deficiencies are discovered. However, because I've realized via twitter just how many lupus patients also have fibromyalgia and because for various reasons, lupus has long been on my personal radar, my ears perked up when I discovered that DHEA is used in lupus, though differently than it is where fibro is involved.  In other words, DHEA is "different" for lupus treatment.  When I heard my rheumy say that DHEA is prescribed for many lupus patients without a base line blood test for DHEA having been drawn, I was hooked, not to mention almost shocked. The "almost" with "shocked" is added only because really, with lupus, not much is "normal" at all.

To get back to the DHEA matter, I also found this interesting since too much DHEA can cause facial hair growth and acne, side-effects which are quite undesirable for women. In that earlier post when I mentioned that I'd been on and off of DHEA for a few decades (link), in the interest of brevity I didn't mention that I know my DHEA level is getting too high and that levels are now "fixed" until my next major health crisis comes along by the much increased peach fuzz on my face.  Being practically hairless on my face, it's a shocker to see anything show up in the "beard" area.  Actually, you'd think that when I have no "peach fuzz" whatsoever, it would be signal to me that my DHEA is low, but we're talking about moi here, the "queen of no short-term memory," after all!

But back to DHEA and lupus.  Unfortunately for the female of the species, it is women who tend to get lupus far more often than men.  (Yes, walk into a rheumy's office and you see about the same female to male ratio as you get in the audience of "The View" - or in an ob/gyn's office for that matter: take your pick!)  Normally, when a doctor prescribes a hormone to someone who is deficient in that particular hormone, the doctor prescribes it to make up for a deficiency.  Pretty straight forward here, right?   However (and you just knew a "however" would come sooner or later!) when it comes to women and lupus, DHEA is often prescribed to them even though they may actually have normal levels of DHEA.  Interestingly enough, DHEA is ordered for them without blood levels having been measured, in which case the DHEA is intended to act like a drug (medication).   Consequently, the DHEA in lupus has effects beyond simply maintaining the body's hormone balance. Why do they do this, pray tell?  At first glance, it would seem so irresponsible and reckless!

It all comes down to the effect of sex hormones on patients with lupus.  The more "female" a woman is, the more likely her lupus is going to be severe, and possibly life-threatening.  This "phenomenon" became known over 30 years ago when animal studies were done and data collected.  There is a strain of mouse which develops pathology that is almost identical to lupus in humans.  These are NZB/NZW (New Zealand Black/New Zealand White hybrid) mice, which have been extensively studied in order to gain insight into lupus in humans.  When the ovaries are removed from the female mice and the mice become less "feminine," they live longer and have less kidney disease than their female counterparts.  On the other hand, if the testes of the male mice are removed, they die sooner than their male counterparts.

The same pattern holds true with hormone injections.  If you give male hormones to the female mice, the development of lupus is delayed and they live longer.  If you give female hormones to the male mice they die sooner because they get lupus earlier than their male counterparts.

DHEA is made by the adrenal glands of both men and women (humans).  But men typically have much higher levels than women until advanced age.  That being the case, medical investigators decided to treat female lupus patients with DHEA to make them less "female."  It seemed to work and lupus patients receiving DHEA seem to fare better than they did before they started getting their DHEA.

It actually made a lot of sense since those women with lupus who became more "female" by taking birth control pills or becoming pregnant faced horrible complications due to lupus flares.

Before I get into the home stretch of this post (hallelujah!) I would like to point out that in the case of DHEA and lupus, not only should you discuss this with your physician because there are a number of circumstances that would preclude you from taking DHEA.  Furthermore, the DHEA should be bought from a compounding pharmacy to insure the highest quality preparation possible, vis a vis, consistency and excellent bioavailabily.

Here is a prime example of a hormone being used as a medication to treat a disease instead of a supplement to normalize the body's hormone status.  Even though some of the women with lupus receiving DHEA develop facial hair growth and acne, most would prefer these side effects to having a miscarriage or needing to go on kidney dialysis.  Moreover, an added bonus of taking DHEA for lupus is that the disease becomes more easily controlled, allowing the patient to often get by with less medication, including prednisone and it's humongous list of potential side-effects. 

Even though fibro is found in more women than men my rheumy told me that the only time he uses DHEA for fibro patients is when they are indeed deficient in it.  Of interest is that my rheumy has actually measured DHEA in his lupus patients.  Many of these unfortunate women were found to have no detectable DHEA in their blood.  So perhaps giving DHEA for lupus without testing isn't so crazy after all.  It seems to get results.

And you wonder why I find lupus fascinating?

As always, hoping everyone out there is feeling their best, only better.  Ciao and paka!


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Fibro, HGH and DHEA...

You mean you're STILL looking for what's going wrong?

I know I keep going on and on on about Human Growth Hormone "Deficiency" (I have trouble with the term but that will have to keep for another post).  You may very well be thinking, "here we go again," but there really is good reason to go on about HGH today!  Last night on twitter I happened to mention that blood work from the visit to the endocrinologist was slowly trickling in. Yawza!  My doctors and I are in a bit of a surprised state.

Fortunately, my thyroid tests are thus far all normal.  That is, the thyroid medication and dosage seem to be working a treat.  So it looks like THAT seems to be under control though to be perfectly honest with you, I personally have a problem with all thyroid testing and its accuracy.  (Another post, folks!)  But be that as it may, we need to look elsewhere for what the REAL problems may be and today we have two clues as to what may be causing me to feel as sick as I did back in 2001, if, that is, it's not the worst I've ever felt.  Period.

My doctor checked for a hormone called DHEA (Dehydroepiandrosterone).  This is not new territory for me. For those who aren't familiar with DHEA, this is a hormone that both men and women make and is released by the adrenal glands, located above each kidney.  This hormone is necessary for many bodily functions including resistance to infection, muscle toning and energy level.  In the past, I've actually been low in my DHEA level and have had to take supplements to get my levels where they should be. 

DHEA levels can actually fluctuate based on pain levels, nutrition, sleep and the presence of other diseases. Consequently, the levels should be taken (in the form of a blood test) periodically, some even advise every month or two.  (If we tested me every month or so for everything, I'd have no blood left, so we do so only about every year or so!)  Normally, DHEA levels decline with age - isn't that often the case?  Sigh!  In the past few years my DHEA levels have been pretty much spot on (hallelujah! Something that's right with moi!).  However, my most recent test shows that my level is about a third of what it should be.  (What luck!)  My doctor will be prescribing DHEA in pill form - again - to be taken once a day and we should be set on that front.  To tell you the truth, I've never felt much of a difference in taking the DHEA, but it makes the guys so happy that I just let them get their jollies with me when they can.  (Did that sound improper?  I assure you it wasn't meant to be anything but amusing!  I get my jollies where I can as well!)

However, the part that HAS intrigued me is that in taking my most recent blood work we checked out my HGH levels again, just for "fun," and there we were in for a surprise! (See previous links to HGH posts here, here, and here.)  

To be boringly accurate, one doesn't actually check for hormone levels but for by-product levels of IGF-1 (Insulin-dependent growth factor 1).  This chemical has a very long half-life so a random blood test will give the doctor a good idea of how much growth hormone has been released from the pituitary gland in the brain over the last few days.  As we age we make less and less growth hormone: this is normal.  However, as Bennett described in the literature beginning back in 1992, HGH levels in people with fibro are all too often low and in 1995 Bennett showed that growth hormone injections improved the quality of life for his fibro patients.  However, because adult growth hormone deficiency is thought to be rare, expensive and hard to obtain, doctors do not check levels of IGF-1.  Because they do not see cases of growth hormone deficiency the concept that it is rare in adults got solidified in physicians' minds, further complicating a convoluted history. (Understatement!)

OK, time to take a step back for a moment in order to understand the whole myth, "secrecy" and even legend of the whole HGH issue, though in very "Cliff Notes" style.  The whole issue became muddled when abuses began with the misuse of HGH.  In children, who indeed DO need HGH in enormous amounts in order to grow, etc, the hormone was suddenly abused by some doctors and parents who had children who did NOT have HGH deficiency but because they wanted their children to become better athletes and thus the whole system got out of whack.  Further complicating the system was when ADULTS wanted to look younger and abused the hormone for cosmetic reasons.  Do we even need to go into the abuses on behalf of adult athletes?  

The government tried to control the abuses of the hormone and imposed controls which the insurance companies took advantage of, thus making a cluster you-know-what.  When I was diagnosed with HGH deficiency in 1999 it took two YEARS for HGH to be approved on behalf of all agencies involved and we could not buy any for love or money, even though I was lying in the hospital dying with all of my organs shutting down when, finally, the HGH was shipped to us via courier.  It's still very difficult to get HGH (not available in a pharmacy but only each month, still via courier, after a call for a delivery time, date and place each and EVERY month! Talk about restrictions!).  HGH is still very difficult to obtain with lots of testing needed to "satisfy" all the powers-that-be, although much easier to obtain than back in 2001.  Now you have the back story in a nutshell, though trust me, a book could be written on this alone.

Back to today...

I just learned that my most recent IGF-1 level had dropped from a normal value about six months ago to a much lower level now.  This is quite unheard of.  We normally go to my endocrinologist to make sure that my IGF-1 level is not too high since as I age, we need to keep the level at the number that someone my age would need and NOT any higher.  Now here we are, stunned to find ourselves with a much lower number than what we ever could have imagined.

This is also surprising because my dose of HGH had not changed for many years, since 2001, in fact.  The last time my levels were taken was in September.  What could have happened to change a number so quickly or even to change it at all?

There are several possibilities that come to mind:

• Although my pneumonia was probably developing earlier, it wasn't diagnosed until October 11.  The pneumonia may have weakened me and made me more prone to develop a lower hormone level.
• At about the same time, I had my gall bladder and stones removed.  This is major surgery (as I found out the hard way!) and is a major stress on the body.
• The holidays certainly didn't help my general health.
• The remodeling and redecorating (which seems to be a permanent state of affairs here in this house) has most definitely not helped.
• We've gone from a family which has had embarrassingly great health (except for MOI - must give that caveat again!) to a family with embarrassingly BAD health with each family member undergoing major surgery in the last year and a half.  Talk about stress and worry!

At any rate, I include this info because again, I really want people out there to realize that DHEA and HGH levels are so important and frequently problematic in fibro.  Please do yourself a favor and talk to your doctors about this if you have unexplained fatigue, low stamina and muscle weakness.  Also, a deficiency of these hormones can make you flabby (as I can attest!) and unable to lose weight, no matter how much you try (again, I can attest!  Sadly!).  Again, previous posts go into other aspects of lack of HGH (see search box if need be).

I don't know that we've found my Red October in the Hunt for it (see previous posts on that) but at least we have one small explanation for my recent deterioration. We just need to see if this is yet another red herring or the real deal.

As always, hoping that everyone's feeling their best, only better.  Ciao and paka.



(Did you enjoy this post? Please subscribe to my blog and you'll never miss another one again. It's easy: follow the directions on the upper right-hand corner of this page. And BTW: I'll never sell, share or rent your contact information. I don't even know where to find it, so fear not: it's a firm promise!)