Adult Growth Hormone Deficiency - MerryBe Questions and info.for ALL.

[DoubleDose]

MerryBe,  I posted to you on the survey thread below regarding joint and muscle problems pre and post tx.  You brought up the issue of Pituitary Deficiency and related disorders that may be related to HCV or possibly with the tx also.  Here is my post from that thread.  I hope everyone will read the symptom list and consider whether they may fit the profile for this pituitary disorder.  I am going to get this checked out very soon!  It sure sums up most of my problems.  Anyway here is my post:

"Tell me more about how you were diagnosed for the pituitary deficiency.  I have been reading articles on Adult Growth Hormone Deficiency, and other similar diseases, which all seem to cover the same problem...pituitary insufficiency.  An article that I just read describes my current issues exactly!  Here is a short symptom list from the article:

Symptoms of Adult Growth Hormone Deficiency
A person who has too little adult growth hormone will have symptoms that include:

A higher level of body fat, especially around the waist
Anxiety and depression
Changes in the make up of the blood cholesterol. People with adult growth hormone deficiency have higher than normal levels of low-density lipoproteins in comparison to their high density lipoproteins. They also tend to have higher triglyceride levels. (Triglycerides are another type of fat that circulates in the blood and contributes to blocked blood vessels.)
Decreased sexual function and interest
Fatigue
Feelings of being isolated from other people
Greater sensitivity to heat and cold
Less muscle (lean body mass)
Less strength, stamina and ability to exercise without taking a rest
Reduced bone density and a tendency to have more bone fractures as they get older


This really hits the nail on the head for me.  How many HCV doctors are aware that this is a condition related to HCV or possibly Tx?  I would assume that my endocrinologist, who is tops in his field at Johns Hopkins, and has published several books, would be able to identify and treat this condition, if it is relevant in my case???  I am currently on Thyroid Replacement therapy with him.  I have noticed almost all of the above symptoms developing in the past few years, and the mid-waist body fat accumulation is pronounced, bone resorption in jaw, triglyceride increases, etc. etc.  Maybe this is one of the post-tx issues that should be checked out for people who develop these mood, fatigue, and energy related symptoms, with the other blood chemistry signals, etc.  

Please let us know what you have discovered, how your doctor figured it out, and how easy and expensive it has been using the HGH replacement therapy.

I am very intrigued by this issue, and it sure fits my profile so far.  I guess I need to visit my doctor soon.  Thanks. "


Any other input regarding this disorder, its diagnosis, and treatment, and how it is impacted by HCV or tx is appreciated.  Maybe we have more hormonal issues going on than we ever realized.  The Thyroid issues are somewhat commonplace, and many are addressing them now.  But this may also be a consequence of HCV and may impact some of us without our having any idea what is going on.  

DoubleDose

[merryBe]

boy, I can't believe that I couldn't type pin h.e.a.d. in here!!!!!  

this is a medical forum...and we can't type the word h.e.a.d.?????????????

go figure.

[merryBe]

pulled this up again for you guys...

I think Deb you have a point about the adrenals.

At the time I asked for BOTH to be tested and my doctor did the ATCH but refused to do the pituitary.  OF course I did not know the IGF-1 was cheap to do.....
and she did not tell me. (of course, further expensive test must confirm the igf before tx can be ordered.

the case for cushings is real as well, the same gland of course, pituitary, controls our adrenal out put, cortisol etc etc..
In case of suspected Cushings, look for not just exaustion but moon face, large hump of fat deposit between shoulder on back, extreme weight gain around torso and of course the all too familiar exaustion.

adrenals may play a bigger part than many realize, especially those who stress out their body with overwork or drug/alcohol abuse may find it plays a part.
it is also true that a tumor the size of a pin ***** on the pituitary can cause you to over produce any of the Pit. hormones, so part of this therapy IMPORTANTLY is to rule out any tumor. MRI is used for this.
THIS is a good thing, as HCV can cause brain changes.....and at least you can monitor these then.
SOME MAY NOT want to know this....but I find it better to know there are thirteen wierd spots in my brain.....makes me appreciate whats left. One day, this may lead to new therapy for HCV patients if they ever can prove the HCV caused the spots.
HAPPILY, no spots on my pituitary though so I was good to go there.


If you have an MRI with contrast I would ask for a HALF normal dose, or else a different CONTRAST AGENT.  Currently GANDOLINIUM is in use, and it is hard on kidneys...
IMPORTANT info while on RIBA.
I have opted for waiting until off Riba for another brain scan...or having one without contrast if my neuologist insists on sooner.  So far he has not insisted...
because he says the spots exist, and all they can do is monitor their progress there is no treatment and "NO KNOWN CAUSE"   but of course, my suspicion is they may well be linked to the virus. They show up as white spots....that look like areas with strokes...or demylinated and therefore highly WHITE or extra active...
there is no reason not to monitor this...it's highly possible a virus could cause fibrotic and/or demylination effects elsewhere in different type body tissue.

Remember this is only suspected in certain research I've read....to date I have not seen any autopsy studies of whether detectible virus is more concentrated in these brain spots than in the tissue appearing healthy...and of course, they will have to wait till somebody decides to take it on...and starts collecting all our brains!!!!!!!

Sheesh......but I wish there was more known about this...if this virus causes brain infections or failure they might rachet up their efforts to eradicate...in other words, early detection would mean less brain addled adults later...
sheesh how did I get int all this!!

[merryBe]

add to the list symtoms of diebetes, as the pituitary shuts down so do all glands as they derive their signal to make their particular hormones from the pituitary, so it's a cascade effect.

add to above list polycystic disease, brain fog, extreme low energy, etc etc.

LADY WHY....the 1 st test is cheap IGF-1  (insulin growth factor-1)
you may be able to persuade a GP /PC/ or hepatologist to just check your function BASED on the research that now shows HCV patients often are low and/or lose pituitary function.

IF this test puts you within normal range, even low end of normal, you'll have no help from the insurance.
IF however you make half of normal say, then you can go to an endocrinologist for proper testing to get an exact test (required by ins.) once the longer test varifies your status you qualify for the medicine, however it helps if your doctor beleieves those that need it should have it.

there are docs that think if you don't make enough, tough, you'll just age faster and die faster....oh well..........but that is changing.
Also, there is a division of Lilly devoted soley to getting claims for HGH approved. My doctor turns his cases over to them, they usually get them approved in a couple weeks.
It can make a huge difference in how you feel....I know I used to never go to sleep expecting to wake up...too exausted.....but since going on this therapy I haven't had any more nights like that in over a year.....and that's in spite of other health issues.
The HGH is a delicate protein secreted at night for tissue repair and growth.
At this time there is still no oral cheap form of this protein. There may be one in a few years. I was in a Merck trial for an oral non-peptide secretouge designed to stimulate the pituitary into secreting more hormone. For me in worked but did raise my blood sugar. The natural HGH can also do this. One must be committed to a good low sugar diet to go on to this therapy. the idea being to remove diseases not to create more.

At therapeutic levels there are very rarely side effects, only the sports and hoolywood types taking 10 times normal doses end up with problems....but then anytime people take 10 times what is needful that happens.

[DoubleDose]

I have already gotten the idea that the GH therapy is pretty expensive if necessary!  But, if it is determined that I really am deficient, and it is necessary to proper functioning and health, then my insurance is going to cover it.  I don't think there would be a discretionary choice on their part.  DD

[ladywhy]

I remember MerryBe stating that because there is no synthetic growth hormone and they must use a natural one...it is over the top expensive. Insurance companies don't wanna pay...doctors don't order the test. I also remember her stating that the first lab work can be done with a script from PC...and it's inexpensive. The 2nd one if it shows ...is moreso. At least that's my memory of one of her posts....I hope I'm correct...

[Deb_c430]

Think the adrenal gland should be added to the mix also.     Thanks for posting this interesting

[DoubleDose]

Another comment:  If GH Deficiency is 'common' in HCV patients, and 81% of the HCV+ sample studied had GH deficiency....then WHY are we not routinely tested for Growth Hormone deficiency by our doctors during our diagnostic workups, or after therapy.  From the articles that I have reviewed so far, this deficiency is not benign, seems to have a wide array of damaging effects, and is very treatable to boot.  Maybe the hormonal issues ARE indeed at the root of many of our symptomatic issues, as Merrybe
stated in a thread below.  I know that I want to get some definitive answers soon, and really determine what my entire hormonal /endocrine system looks like.

DD

[DoubleDose]

Also, here is a link to an HCV related article on Growth Hormone Deficiency that was displayed on the HIV and Hepatitis website:

http://www.hivandhepatitis.com/hep_c/news/2008/010808_a.html

I personally am not so sure it resolves after using interferon!
Thought provoking subject, and I also wonder how many have been developing these deficiencies over the decades from HCV, and have never been tested, nor even diagnosed.

DoubleDose

[Forseegood]

thanks for this, really interesting!!!!

[justme53]

This is such an intriguing subject and the first I've heard about it. I, too, will be following this thread with great interest. Looking at the list of symptoms, I bet most of us can relate to many of them.

A question that hopefully will be answered down the line when more info is posted.....Is the AGH deficiency possibly also an age -related issue..?  I know of several people my age that do not have HCV, yet they fit the profile symptomatically.