Adult Growth Hormone Deficiency: The 21 signs and symptoms

by Stephen Cobb on May 12, 2009

So, in the continuing iron overload saga, it now appears that my wife’s hemochromatosis has had three major impacts, or impacted three major glands (thyroid, adrenals, and pituitary). Although a course of phlebotomy is underway to treat the hemochromatosis, dealing with damage to the glands is more complicated.

Consider the Human Growth Hormone deficiency due to the damage to the pituitary. It’s not like HGH is something you can get over the counter at the local pharmacy. The substance itself is unstable, requiring special handling, and it very expensive to produce. And thanks to years of mindless abuse by selfish greedy so-called “athletes” HGH is not easy to get (in the State of New York it’s a controlled substance, with all the hassles that designation entails).

On the upside, there is some good support out there for sufferers of human growth hormone deficiency, which mainly occurs in children. The adult version is known as Adult Growth Hormone Deficiency or AGHD. I was amazed to learn how much of an impact AGHD can have on a person. Consider this list:

  1. weakened heart muscle contraction and heart rate
  2. increased arterial plaque and blood pressure
  3. elevated lipids or fats in the blood (cholesterol, LDL, triglycerides)
  4. decreased exercise capacity due to decreased cardiac output
  5. decreased energy due to decreased metabolic rate
  6. abnormal body composition (increased abdominal obesity–waist to hip ratio)
  7. decreased bone density due to decreased synthesis of bone
  8. increase in fractures and osteoporosis
  9. decreased muscle strength and muscle size
  10. decreased lean body mass
  11. increased fat mass
  12. low blood sugar (dizziness or fainting weakness or tiredness, headaches)
  13. poor concentration or memory
  14. decreased sexual desire
  15. sleep problems
  16. shyness
  17. withdrawal from others
  18. nervousness or anxiety
  19. decreased social contact
  20. sadness or depression
  21. feelings of hopelessness

The bad news is, my wife has experienced all of these. The good news is, HGH could reverse any or all of these. So if you read the list as one of positive possibilities it’s quite exciting, like #5: “Increased energy due to increased metabolic rate.” I know she’d like that!

Of course, there’s a long way to go yet. AGHD is a pretty nasty thing to be hit with. When I first looked over this list and got to number 21 my reaction upon reading it was: “That’s entirely understandable!”

List source: Human Growth Foundation metabolic rate”

{ 6 comments… read them below or add one }

Deb March 20, 2010 at 1:21 am

Stephen,
My name is Deb Galbraith and I too have AGHD, finally diagnosed in January 2010 after many long years of suffering. I have ALL 21 symptoms you have listed. I’m four weeks into therapy with little, if any change, but I do know it takes many months to see improvement. My husband, John, is my champion. How’s your wife? Has GH therapy changed her life? I hope she’s doing wonderful and it has made a positive change. I would love to know what being on GH has done for her; if it has helped and what her challenges have been. There are very little resources available that discuss the outcome of this treatment. I’m looking, of course, for some hope that things will get better……. Thanks, Deb

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Stacey Coleman July 9, 2010 at 7:39 pm

How was your wife diagnosed? Did she see an endocrinologist? I am treated by a hematologist, but I usually only see the lab assistant who does my phlebotomies. Although now de-ironed (after 11 treatments), I have gained 25 lbs since I was diagnosed last year. Mostly it is in my stomach area. Although tired, I maintain a fairly active lifestyle, so I am starting to suspect I may have this deficiency. Any information you could provide on how she was diangnosed and by what specialist would be helpful. I hope your wife is feeling better.

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Stephen Cobb July 24, 2010 at 5:38 pm

Stacey — Sorry to take so long to respond. The blog has been experiencing technical difficulties. Also, I have been very busy setting up a new blog just for Hereditary Hemochromatosis. It is called CelticCurse.org and I will be writing a post there this weekend that will address some of your questions.

For example, you ask how my wife was diagnosed. When I first read your comment I assumed–mistakenly–that you were asking how her hemochromatosis was diagnosed. I wrote several paragraphs about that [which appear at the end of this comment]. However, I now realize what you really meant was: “How was her AGHD diagnosed?” In other words, you’ve already been diagnosed with hemochromatosis and you are now concerned you might have AGHD.

It was an endocrinologist that diagnosed the AGHD. This happened after my wife collapsed at the health clinic and was rushed to the ER in the adjoining hospital (see Crash Team to Oncology Stat). This was the only time we have seen anything like the focused, multi-specialist attention that you might think is normal if all you know about healthcare in America is what you see on TV shows. Sadly, the eagerness to get to the root of my wife’s health problems faded all too quickly. Low endocrine readings led to her receiving minor thyroid supplement, moderate GH supplements, and a lot of cortisol.

A year and two endocrinologists later she was not feeling any better and a new round of tests indicated she was no longer low on GH and only marginally low on thyroid. Furthermore, the large amount of cortisol was probably a mistake. I realize all this might not be encouraging news Stacey, but that is pretty much the story so far. She is no longer taking any supplements and still has a. extreme sweating, b. joint pain, c. general body pain, d. bad migraines, e. serious fatigue, f. lapses in mental clarity, g. periodic double vision, h. a lot of excess weight despite a lack of appetite and a relatively low daily intake of calories.

As for the original diagnosis of hemochromatosis, it was our family doctor that first suspected this. She had dealt with a case many years ago. This is often how it goes. I don’t think the current generation of family doctors in America know to look for hemochromatosis unless they have encountered it before (for example when they get a new patient move to their area and the person already knows they have the condition). Also, there is a persistent misconception that hemochromatosis in women is rare.

Based on past surveys, it takes an average of 9 years from when a person starts experiencing the symptoms of hemochromatosis until they are diagnosed. That’s 9 years during which toxic levels of iron in the body can be wreaking irreversible havoc on joints and organs, mental state, and more. As a result, people are faced with the tragic irony of finding out why they are sick, but it comes too late to undo a lot of the damage.

As to weight, over the years my wife has gained a lot of weigh with no change in diet or routine. In fact, I am convinced this is one of the medical syndromes we need to attack in the fight to increase knowledge and awareness of hemochromatosis: When a woman approaching middle age starts gaining weight for no apparent reason she is led to think it’s “just that time of life” or “it just happens.” In fact, it may well be one of the first signs of the metabolic disorders associated with hemochromatosis, possibly triggered by a decline in monthly blood loss (a normal menstrual cycle typically prevents iron build-up).

I will be writing more over on CelticCurse.org and hopefully some of the links there have information you will find useful.

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Blake Barrow July 9, 2012 at 9:07 am

My name is Blake and I was recently diagnosed with hgh deficiency. I’ve had all the symptoms above and its been a really rough year. They are going to start injecting me with hgh every day and im hoping it starts to make me feel better. Did your wife have injections by any chance? Or what kind of treatment did she have?

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Kelly March 22, 2014 at 8:08 am

I was recently diagnosed with AGHD. Years have gone by with extreme fatigue, migraines, weight gain, loss of muscle mass and general pain throughout my body. I thought it was just part of growing older until last year. I went to the ER for extreme pain in my neck and from there everything went downhill. I was admitted for days, multiple tests and imaging done. The doctors kept saying I was depressed or I had anxiety issues. They gave me anxiety meds that led to depression meds while I kept insisting it was more. I felt it was a hormone issue but they looked past it. The meds made me worse to the point it was unbearable. The only thing that somewhat helped was birth control. However my body could never handle those very well. I finally took my health in my own hands as my GP could not get off the depression status. I made an appointment with an endocrinologist and she ran tests. First round confirmed extremely low IGF-1 levels. She ran another extensive test that showed my body failed to produce the growth hormone. Today I’m sill waiting for treatment but feel very happy that I have a diagnosis. Hopefully treatment will put me back on track in life and I can enjoy my life again. This has been a rough journey and pray for those effected with this as it’s such a debilitating deficiency.

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Trever March 31, 2014 at 5:01 am

I have had similar symptoms for 3 years now with no one really beliveing me or trying to understand. Specialists have looked at everything except HGHD and have even put me on antipsychotic meds, which i am now off. It’s a struggle just to make it through the day, and having 5 children i try not to use it as an excuse not to go about my day as normal. Alot of symptoms come and go but the tiredness, weakness and brain fog are always there. I just have no idea where to turn…

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