Diagnosed with growth hormone deficiency.

[quest55720]

To make a long story short I failed a GH stimulation test this week. The test was a last resort as the ENDO ruled out everything else under the sun before he would give me the test. This includes MRIs, genetic testing and a ton of cortisol testing. This all started because I was having a really hard time losing weight. I know what I am doing lost 150 pounds before kept off for 3 years then put back on 60 pounds. I was doing every I did before and nothing except water weight in the first week. I knew something was up after 6-8 weeks of no weight loss so went to the doctor to find out what was wrong.

I was wondering if anyone else has the same issue? I was looking for a good support group and a good place to read up on it. So many of the links in a search are from black market pharmacy type places or people looking to get HGH with no RX. The legit places I have found are pretty much dedicated to children of short stature. Was hoping to find a good forum with adults with GHD.

My wife and I are kind of scared because we don't think insurance will cover treatment. Because I have the rare GHD where there are no other pituitary issues and the cause is unknown. Reading what my insurance company has online I will be denied. What little I can find on cost of treatment is just crazy.

 

[GHDmom]

There is a ton of seriously useful and experienced people with Adult GHD attached to the magicfoundation.org It looks like a kids group but does also have an adult focus and FB group too. It is a complicated situation and the doc's ALWAYS look everywhere but GH first--but you are already past that. It will be uphill from here!

 

[Sust]

Sorry to hear OP.

Whats even sadder is that your search to find legit support groups was overwhelmed by the black market thats formed around those without your same pathophysiology.

You might consider trying to hook up with your nearest University that also has a medical school attached to it. Frequently they have specialty endocrine clinics with some kind of sliding scale fee or research study that you could enroll in that might help subsidize care. This would require some digging on your part, but there's always the NIH sponsored clinical trials who also might be able to point you in certain directions.

 

[quest55720]

I found a good support group the magic foundation adult group on facebook. But I lost all my appeals with the insurance company and my free trial is over. I tried a few foundations for assistance. I either have to much income, there no funds left or don't qualify medically since isolated AGHD. The cost out of pocket for my starter dose is 858 dollars a month which I could never afford. It was an amazing difference on treatment. I felt like my old self and in 60 days lost 5 inches around my stomach and gained up to 50% strength in lifts almost back to where I was. My stamina returned, could sleep normally again and muscle stiffness went away. I am just very frustrated because I see people in the support group who could not get treatment. It is very sad to see how they just have the life sucked out of them to the point where they don't have the energy or strength to do anything. I am going to go to the Mayo in Minnesota this summer but I don't hold out much hope they can find a cause and a alternative treatment. I worked so hard to get my life together was over 350 pounds at one point. Now all that hard work is going to be for nothing as I am going to slowly gain fat and lose muscle no matter what I do. My symptoms are already coming back 3 weeks with out treatment. I am at a loss what to do anymore. It feels like my life is basically over at the young age of 40. The worst part is there is a cure that I can not get because of cost.

 

[Saint Nick]

Welcome to Amerika. You might be better off finding your product through other means.

 

[Curley]

Endos don't believe in idiopathic AGHD. There is a stigma attached to the medication because of the off label use by anti-aging clinics. What's working against you is that you only have one deficient hormone, growth hormone. If your IGF-1 is below 84 and you fail (Two) 2 stim tests, only being with glycagon and the other with arginine. It really doesn't matter what you growth hormone level is, it is your IGF-1, and IGF-3. These are the hormones that regulate your growth hormone.

To make a long story short, the FDA, DEA, AMA all follow the guidelines set forth by the American Association of Clinical Endocrinologist (AACE). After 20 years of study, they believe that true growth hormone deficiency in adults is a:

History of head injury, cranial irradiation, subarachnoid hemorrhage or hypothalamic disease,

AND 3 deficient endocrine hormones, i.e. hypogonadism, hypothyroidism, cortisol, AND low IGF-1, no further testing required, you have AGHD

OR History of ....AND one or 2 endocrine hormone deficiencies, IGF-1 in the low 50th percentile, failure of one stim test with the Doctors' option of a second stim test. (Consistent below normal IGF-1 readings is your biggest denominator in determining if any further testing is needed. If you have one endocrine hormone deficiency and exteremely low IGF-1, they are most likely going to diagnose you. Tie goes to the patient when your IGF-1 is below normal)

Let's put it this way, at 53, it took me 4 years to start treatment, and 6 years before that to even get close to testing for it. If you have it you have and you'll eventually be treated. If keep going into the Endos office and tell him/her how well you feel after one month on somatropin, they will continue to frown because it takes at least 3 months of treatment before your body will start to metabolize the drug if you are truly deficient.

It sounds like you are heading that way but it will take time.

Good Luck,

PS: I went through 6 Endos including some leading endos in Boston. Here is a tip, if your endo is a man and older that 50, walk out. You have to find an Endo that started med school in the late 80s when the drug was approved for AGHD so it is not so foreign to them when you advocate for yourself for the treatment.

 

[AyashiKaibutsu]

That really sucks. I have a rare disease too and I know how depressing it is to watch as doctors flail around avoiding treating you.