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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Thursday, February 21, 2013

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.



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1 comment:

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