Adrenal Insufficiency Support Group

I asked this question on the hypopit page but it is not a very active group... so i am coming here for thoughts!

Who is taking HGH subcutaneous injections and what were your most noticeable results? How soon and at what age?

My 14 year old is now 2 years cancer free after having a pineal germ cell tumor, there has been no recurrence so HGH was next to get her feeling better. She is on a low adult dose b/c she no longer needs to grow but needs help with feeling better. This is the latest edition to her daily hormones and I am excited that this will hopefully be a positive step forward.

All information is welcome! THANKS!

Since Growth Hormone (GH) is secreted by the anterior pituitary, when SAI is diagnosed it's possible to have GH deficiencies. GH is secreted in spurts, goes to the liver and there creates IGF-1. GH deficiences are therfore indirectly determined by measurement of serum IGF-1. From some scribbled notes I have, a glucagon stim test can also be used to stimulate the pit to secrete GH and so help determine if the pit is the source of GH defieciencies. Some symptoms of low GH are similar to general SAI symptoms: fatigue, depression, joint pain, muscle pain, low BP. And GH deficiency symptoms can be one of the first symptoms to appear when the Pit is damaged, or in cases of head trauma such as concussion that affects the Pit.

I know some people here have spoken in the past about taking GH shots. But I don't know if their experiences doing so would relate well to your daughter's condition, or not.

Comments anyone?

Hi kgo - I have panhypopit too and active discussion groups are definitely hard to come by! lol I was young like your daughter when I was diagnosed with a pituitary tumor, so we probably both suffer from similar hormone deficits. I was on GH until I was about 14, was taken off for several years before the importance was GH in adults was well known, and now I've been back on for about 5 years (I am 25 now).

My experience was this: It's hard for me to say for sure that lack of growth hormone was causing feelings of fatigue and depression because there are so many other possible causes with hypopit, but I do think it helped. It took me a very long time (several years!) of my endo adjusting the dose so my tests came back with normal levels, but I don't think this is the norm. I'm on a very high dose for adults (1.5 mg daily). It definitely helped with my overall stamina. I exercise several times a week and after my body should have long been used to it, I developed a very low tolerance for it. I definitely would say I have increased stamina since I have been on an adequate dose.

I have to say that the results came slowly and were subtle but it was one of those things that when I looked back and compared how I felt then to how I feel now, the difference is pretty obvious.

Also (and this is a biggie for me), is your daughter also adrenal insufficient? Because of this, the steroid treatment lowered my bone density and I was told I had osteroperosis when I was 20!!! That's when I started the GH, had another bone density test about 1 year ago, and although still on the low end, my bone density has improved. If this is a concern for your daughter, I would think that she is already on the right track for NOT having this happen to her, which would be great!

I haven't had any side effects that seem to be a drawback of this medication. Is she also hypothyroid? That's one thing you might need to look out for, the GH meds and thyroid meds counterinteract sometimes and will lead to lower thyroid levels. A good endo will pick up on this and adjust the doses accordingly.

Congrats on her being 2 years cancer free! Good luck.

Thanks Kayrg4. Yes she has Central Adrenal Insufficiency (SAI) and Hypothyroid and Diabetes Insipidus she also take Estrogen and Meletonin. All being Pituitary related. She takes a pharmacy of hormones and supplements daily. She also has to sleep with a bi-pap from some of the damage close to her brain stem controlling her autonomic system. She also has severe Osteoporosis. So the estrogen has helped that already but we knew the GH would also improve this. She has now been takg it for 3 weeks and so far, the only thing she says she has noticed is, her memory is improving. (she has significant memory issues from tumor as well)

I have also read that the over all well being seems to improve, so i was wondering how quickly this began for others and if weight loss was probable?

The change is slow and gradual. They check levels and then keep adjusting the dose - kind of like thyroid levels. I don't know that it leads to weight loss, but it can change the muscle mass to fat ratio. It also increases your energy so that you can exercise. Good luck.

I don't have much to add, Chance was 4 when he was diagnosed with panhypo and all the fun stuff that comes with it, and it's only been two years. Before medicating he hadn't developed mood issues and physically he was still relatively "normal" (aside from being small). He got used to taking the GH shots very quickly and honestly I lurk here so I can read discussions just like this one!

Good luck with the shots, hopefully your daughter keeps improving!

Thanks Gwenyth. I am hopeful that this will be the final piece to her puzzle and she really will regain some energy. the HC makes her hungry so her wieght is becoming an issue and I am hoping for the best that the GH will counter that some. I just got her a new membership at our local Y and I am hoping that woo will help.

Thanks again everyone and keep your replys coming! I am very interested to know your experiences!

Hi kgo, to be honest, I didn't notice a weight decrease after being on GH. I'm hoping it is counteracting what it possibly could be and while my weight is an issue, I can control it. It does take a lot of work and control though. I eat very frequently (I can easily eat 2 hours after a previous meal) I try to eat closer to the 3 hour mark rather than 2 and eat very nutritiously. I'll pair a protein with a fruit or veggie, and try to get a lot of fiber. You can usually eat smaller amounts that will make you feel fuller longer in this case. I also drink a lot of water, which you always should with adrenal issues anyway.

I don't want to be discouraging to you - but I find that as easily as the weight comes on with all these hormonal issues, it takes a lot of work to get it off after the proper medication and dosages are in place. I eat very well and exercise regularly and am typically about 10 lbs above what's supposed to be in my normal range. I find when I lose much more than that, I can't keep it off. However, I do feel very good and I think that these habits keep me on the up side of things.

14 is a tough enough age by itself, never mind all of these medical issues. I hope these things help.