Growth Hormone Injection Alternatives?

[fierrbugg]

I hope someone can help me, but honestly not holding out alot of hope. kwim? About a month ago I was diagnosed with Adult Growth Hormone Deficiency through a blood test - and I've even had an MRI to prove it's not pituitary related. During the Arginine blood test, I barely peaked at a 1. My Endo said that a 3-5 was considered low. GH has huge implications in adults - reading the gloom and doom literature is depressing. I just found out today that even though they made me get an MRI, my insurance doesn't even cover the meds. Wth? Finding this issue was a nearly 9.5 year journey to discover what is happening to my body and why despite no intervention whatsoever I only get pg once every three years or so and never for long. We had so hoped to get the GH injections and pair them with an IUI in July and oh yeah that I would feel better in general. Plus I was looking forward to having the potential to lower my cortisol and insulin resistance levels. I guess healthy people aren't that important - I get my metformin for free after all. This entire process has just been one road block after another. So the GH manufacturer wants us to submit 2009 tax returns, etc. to see if we qualify for a free or discounted year of the meds and I'm doubtful that we will. But otherwise I'm told they cost something like $250 a day, you know for the rest of my life.

My question is the title - is there any actual, realistic alternative to GH injections - beyond the crazy pseudo scam mists and sprays out there. I have looked all over the Internet - and I'm generally research girl - but I can't really find anything substantial on this. Or at the very least, (I'll also ask the ttc/infertility threads about this too) is there anything that can help in growing quality eggies and maybe maintain a future pregnancy through the first trimester? Or am I just screwed with a lifetime of miscarriage after miscarriage after miscarriage to look forward to?

[natural4mybabies]

Hello-

I wish I could tell you there was an alternative to the GH out there, but I have yet to find anything.

Our daughter at 2.5 weeks old was diagnosed with panhypopituitarism (yes, that is a mouthful!). In short, she has almost non-existent pituitary function which means none of the other glands (thyroid, adrenal, sex) operate. They diagnosed her with a series of blood tests that confirmed she had very little thyroid and GH present, not to mention she could not maintain her blood sugar levels with food alone due to lack of cortisol.

We have been having to give her daily shots of GH since she was 4 weeks old In addition to supplementing the hormones of course. But I am grateful that my insurance covers much of the cost. We currently pay about $200 a month and as her need increases as she grows, so does our co-pay. I have been told that insurance will stop coverage when she is 18, because they do not consider it essential for growth beyond childhood (despite being critical for bone and muscle maintenance and repair and metabolizing food )

I am just curious, how did an MRI determine it was non-pituitary related? Simply because a pituitary is there without damage or tumor? Our daughter has had 2 MRIs. First to confirm her pituitary is so small it is barely visible. The second to confirm that it was not developing beyond infancy.

[fierrbugg]

Originally Posted by natural4mybabies

Hello-

I wish I could tell you there was an alternative to the GH out there, but I have yet to find anything.

Our daughter at 2.5 weeks old was diagnosed with panhypopituitarism (yes, that is a mouthful!). In short, she has almost non-existent pituitary function which means none of the other glands (thyroid, adrenal, sex) operate. They diagnosed her with a series of blood tests that confirmed she had very little thyroid and GH present, not to mention she could not maintain her blood sugar levels with food alone due to lack of cortisol.

We have been having to give her daily shots of GH since she was 4 weeks old In addition to supplementing the hormones of course. But I am grateful that my insurance covers much of the cost. We currently pay about $200 a month and as her need increases as she grows, so does our co-pay. I have been told that insurance will stop coverage when she is 18, because they do not consider it essential for growth beyond childhood (despite being critical for bone and muscle maintenance and repair and metabolizing food )

I am just curious, how did an MRI determine it was non-pituitary related? Simply because a pituitary is there without damage or tumor? Our daughter has had 2 MRIs. First to confirm her pituitary is so small it is barely visible. The second to confirm that it was not developing beyond infancy.

You mention some of the things that really frighten me about having this as an adult female who didn't get any treatment as a child (bone density, muscle issues, my cortisol is out of control, etc.). To be honest idk why they required the MRI. I believe the explanation given to me at the time by my endo was that they just wanted to make sure that a tumor on my pituitary wasn't the cause so that I didn't get the GH needlessly? Of course it's a moot point if they weren't going to approve it in the first place.

Best of luck w/ your LO. Hopefully things will advance enough by the time she turns 18, that maintenance won't be as difficult/expensive as it is now.

[natural4mybabies]

Originally Posted by fierrbugg

You mention some of the things that really frighten me about having this as an adult female who didn't get any treatment as a child (bone density, muscle issues, my cortisol is out of control, etc.). To be honest idk why they required the MRI. I believe the explanation given to me at the time by my endo was that they just wanted to make sure that a tumor on my pituitary wasn't the cause so that I didn't get the GH needlessly? Of course it's a moot point if they weren't going to approve it in the first place.

I am so sorry you are having a hard time with this. I would be really irritated -if they considered everything to be "normal" with the pituitary simply because an MRI showed no "physical" issues. Just because it is there without a tumor does not mean it is functioning properly!!!

I have read a lot on this topic prior to discovering DD had relatively no gland. So I have a lot of questions for you because I think you may want to look around at other endos if possible:
-Have you ever had a serious head injury?
-Do you have frequent headaches or problems with vision?
-I am assuming you have also had issues with your hormones and puberty? Did you have delayed puberty? Did you have to get on birth control/hormones to have cycles?
-Have you been testing your blood sugar levels consistently?
-What are your thyroid hormone levels?
-Have you had any bone density scans done?(FYI, we have had bone scans for dd but they said it was because one of the side effects of her cortisol meds is low density as the meds are hard on her bones)
-Issues with immunity?
-Have they diagnosed you with idiopathic pituitary function (meaning they are not able to find the cause but at least recognize the absence of funtion). In which case, maybe there is an issue with the hypothalamus?

[bri276]

Contact some of the GH manufacturers (Norditropin, Nutropin, etc). Several of them offer patient assistance programs that can be affordable or even free based on income when your insurance won't cover you. There really is no substitute for GH treatment.

[JaneS]

You might consider The Primal Blueprint plan to control blood sugar and insulin levels:
www.marksdailyapple.com

[fierrbugg]

Apologies for not getting back to you before this - dh took me on an impromptu trip w/o internet access - and it was awesome. My answers to your questions are in bold.

Originally Posted by natural4mybabies

I am so sorry you are having a hard time with this. I would be really irritated -if they considered everything to be "normal" with the pituitary simply because an MRI showed no "physical" issues. Just because it is there without a tumor does not mean it is functioning properly!!!

I have read a lot on this topic prior to discovering DD had relatively no gland. So I have a lot of questions for you because I think you may want to look around at other endos if possible:

-Have you ever had a serious head injury? I was going to say no, but then I did fall out of a shopping cart onto a cement floor when I was young - also there's a story about my dad having me on his shoulders as a baby and walking me into a doorway - luckily he caught me before I hit the ground. idk that either of those would qualify.

-Do you have frequent headaches or problems with vision? Not with vision - but I do have headaches alot - a former naturopath told me they were because of my elevated estrogen during my cycles - and they seem to coincide w/ that

-I am assuming you have also had issues with your hormones and puberty? No real issues w/ puberty - I developed early - which was 4th grade back then - and everything was "normal" as far as hormones until my 1st mc in 2000. After that I gained alot of weight seemingly overnight (although I was never super skinny), and my cycles went haywire. I did have some hair start to grow in odd places around age 16 - but that's it.

Did you have delayed puberty? Did you have to get on birth control/hormones to have cycles? No and no - up until mc #1 my cycles were textbook 28 days for the most part.

-Have you been testing your blood sugar levels consistently? Not lately - but when I did it was always in the normal ranges. I do notice that with certain foods (mostly carbs), my sugar spikes at night sometimes, but that's it.

-What are your thyroid hormone levels? "Within the normal ranges," which I know doesn't always mean a thing. I do have a nodule on my right side and a smaller one on my left - but a biopsy a few months ago came back benign and we're going to be monitoring them.

-Have you had any bone density scans done?(FYI, we have had bone scans for dd but they said it was because one of the side effects of her cortisol meds is low density as the meds are hard on her bones) No - officially there hasn't been a reason for one.

-Issues with immunity? Only in recent years - Dh is a paramedic - and we (mostly me) keep getting staph infections - we assume he brings them home from work? Plus my mil is "colonized" so I tend to get them whenever I've spent longer than 2 seconds w/ her. But as a child - I was rarely sick.

-Have they diagnosed you with idiopathic pituitary function (meaning they are not able to find the cause but at least recognize the absence of funtion). In which case, maybe there is an issue with the hypothalamus? No, all they have done is scan the pituitary w/ the one MRI. But looking into hypothalamic disorders very briefly right now, leads me to believe that maybe this could be a possibility. I'm going to have to do more research. Thanks for this info.