I would like to ask those that have taken growth hormone for reasons of adult pituitary defficiency, to please advise if they have seen any results or have lost any weight, etc. What effects have they experienced?
Hi. I am on gh for adult onset gh def. Been on it about 9 months now. Weight loss didn’t begin for me until my levels reached the ‘normal range’. I am taking .6 daily. Weight loss was as follows… -2 pounds first loss seen, -12 pounds in next 3 weeks, -3 pounds in next 4 weeks. I am having a lot of swelling tho, and am having to adjust my shot daily per dr’s order. Some weeks my shots are 1/2 dose all week, other times I may be able to get full dose 5-6 times that week.
I definitely FEEL better. Have been able to come off all anti-depressants and pain meds that I’ve taken for past 8-9 years for my fibromyalgia. Dr. feels the gh may be responsible for my depression symptoms all this time. My mind is clearing up now that I’m off those, and I feel energy I haven’t had for years now!
Only time will tell if gh continues to help me…if improvements will continue or at least stay with me. Amazingly, my cholesterol levels, and my blood sugar levels have returned to normal ranges… haven’t been normal since beginning other meds for fibro treatment.
HI,. I want to thank you for replying. Your reply is a godsend. I have been searching for someone to talk to, but, as you know, we are unfortunately, in the minority.
I have some questions for you:
- what caused your adult onset growth hormone deficiency?
Mine was a pit. tumor size of a walnut - How old are you and what is ‘normal’ growth hormone level for you?
I am 38…normal range for me should be about 300, mine is 69. - What was your deficient reading before taking HGH and what is it now?
- How much weight do you have to lose and what total have you lost?
I am exactly 100 lbs. overweight. Was 135 in college; now, 235.
I am on 0.1 dose. Seen ZERO weight loss.
I am interesting in knowing how you pay fo 0.6 a day, that is 6 pens a month, right?
I have extreme swelling of my calves, and esp. my ankles. It doesn’t matter how wide the band on a sock or dress ped are, I still am left with a deep ring around my ankles. This is from LACK of growth hormone.
I read that - if you have GH deficiency and it remains untreated, you will eventually have a thickening of the skin.
That’s me.
I just want to know if you have also had any side effects from the injections. I haven’t but again, the dose is low. The dr. just ran my 1st bloodtest and I am position he will see the reading hasn’t elevated much, and will increase the dose. But, my ins. is fighting it, they declined covering it and I have to appeal it.
I work at Horizon Blue Cross Blue Shield, and still, they denied the treatment for me.
I appreciate your candor, and I thank you for taking time out to reply.
It is a priceless gift.
I’ll try to answer those questions:
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I was struck by lightning as a child of 9 and was unconscious for 3 days, and had a head injury from a roller skating accident at age 12. Dr. believes the reason for my gh problem most likely resulted from these head injuries. For that reason, we looked no further to find a reason to “why”.
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I am 52. Lab papers show normal range to fall between 87 and 238. All labs do not use same values, so it’s best to consider your lab’s values everytime you have something done. I use LabCorp.
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I can’t seem to find a copy of my labs when I was first dx’d with this deficiency. I can only imagine they must have been VERY low, since it’s taken me 7-8 months to get them up where they are within the normal range.
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I always was the smallest weight-wise in my family of 7 kids. We have a lot of diabetes in our family, father was diabetic, mother died at 52 from the flu, so we don’t know if she would have had trouble with diabetes in later life or not. But 5 of the 7 siblings are diabetic.
Pre-childbearing, my weight ran 122-130. Ideally, I should be about 130-145 now. My highest weight recently hit 281, right before I started losing (I am not dieting, by the way, so I have no idea why the weight is FINALLY dropping. First time in many years that I wasn’t trying one diet or another, unsuccessfully, I might add). The only reasons I can attribute to the weight loss right now is that perhaps my gh if finally where it needs to be, and I have stopped TRYING to lose weight (not restricting dietary intake in any way. Perhaps I’ve been consuming too FEW calories all this time with my trial diets?)
I have lost 17 pounds to date, leaving at least 122 to go. Doubt very highly that I’ll get that small ever again, considering my exercise limitations with the fibromyalgia/pain. -
Actually I use 1 pen every 25 days or so. Insurance will only allow me what I use in 1 month completely, so I can only get 1 pen per 25 days. That leaves me with a $100 co-pay every 25 days, plus the cost of the needles.
My Dr. sent labs, letter, etc to my insurance company before they would agree that I had a NEED for this med. He appealed it for me.
It comes in 5mg, 10mg and 15mg pens. I use a 15mg pen now that my dosage is so high, thus allowing me to purchase 1 pen/25 days.
If your ins. ever does start picking it up, consider asking your Dr. to rx a higher dose, thus getting a lot more for your co-pay…and allowing you to adjust the dosage individually, per side effects, etc.
I do get some bruising at inj. site some times, but the only ‘side effects’ I seems to be water retention. Dr. has me adjust my dosage when swelling gets really bad, then remain at lower dosage for a few days, gradually returning to prescribed dose. I must say, it does help take the swelling down some…water retention is also connected to the body trying to get adjusted to the increase in gh, as well as the deficiency of gh.
I honestly don't know if my FEELING ALIVE again has to do with the gh, the vitamin D supplement (I am also very deplete in Vit d), or coming off all my other meds. But I must say, it's nice to know I can still function outside of my little safe space I seemed to create when I was feeling so badly these past 20 years with the fibromyalgia/pain/depression///etc. And to THINK most of this could have been Igf-1 deficiency!!!!!!!Me again! Sorry, realized I didn’t tell you that my Igf-1 is presently 162 (range is 87-238 for my age).
After thinking about it, I believe my initial value was 37. Don’t know for sure, but that number is coming to mind. I do remember Dr. said I was VERY LOW.
Hi,
Read your entire email. What a long trip you have experienced with your health to finally be on the road to recovery.
I see that you take the 15g pen…my doctor currently has me on the 5mg pen, but I just started. I see no results, but that is probably because I need a higher dose. I think he started me on the lowest dose possible, and will keep raising it until it hits the normal range.
Which again, for me, is around 300.
I am 38 years old, used to weight 135 pounds, but have packed on 100 pounds over that weight, and never understood why. Eating just 800 calories a day and walking 2 miles, I couldn’t push my body any more over the threshold. I hardy have energy because I am eating too little, but also, no energy due to no growth hormone.
As I said, I was diagnosed with a pituitary tumor at age 26. What happened is,my period had stopped at age 16 and countless visits over the years to gynocologists and endocrinologists proved to be in vain. They insisted I had no growths, no blockages and should just wait for Mother Nature to return.
10 years later, I started experiencing Migraine headaches and was having car accidents, as I could not stay straight in my lane on the road. I knew something was dramatically wrong when my mother was in the car and we were at K-Mart, and there was a shopping cart right in the parking lot, and I drove right into it at about 25 mph. I didn’t even see it. My mother was yelling "Stop! Stop! There’s a cart there"
But the tumor was pressing on my optical nerves and that is why I was having headaches and vision problems.
An MRI showed the tumor. I was supposed to have surgery (which most people do not realize, but this is out-an-out brain surgery, as the pit. gland is in the brain)
However, they shrunk it with medication called Parlodel (the same medication that actor Michael J. Fox takes for Parkinson’s disease)
Though the tumor shrunk and ultimately disappeared, the pit. gland never rescusitated. It remains flat, like a steamroller went over it, and hence, it does not produce seveal key hormones. One of them being GH.
Finally, after 12 years of fighting with doctors, I have proven that the weight problem is medical in nature. They kept telling me that I wasnt dieting right or exercising enough. Frustrating and irritating to hear at times.
I will keep you posted on my level once the dr. tells me the result of the blood test and also of my weight loss.
I am happy for you that the weight is just coming off without trying to diet or exercise!! Imagine if you now start to diet, you will really get going!!
Thank you for your reply. It is beautiful people like you that generously share your wealth of knowlege and experience that helps out others who are nothing more than mere strangers.
You have the heart of a dove.
God Bless You and please check this forum often. I will be keeping you posted!
Thank you
Auntie Em-
I’m glad that you asked the question, because I am in your shoes as well. My last IGF-1 levels came back at 41. I’m only 31 but feel like I’m much older. My body image is now in ruins. I want to feel like there is hope out there to be the person I was. I go to see my dr. soon and am anxious to begin GH treatment. It sounds like it’s going to take awhile before I reach my normal range, but just the having the confidence knowing that I am taking the right hormones is going to be enough to begin with. Thank you to all of you have taken the time to begin this network. It feels good to talk to others like me…
Hi Momma G,
I started taking the Growth Hormone in March, at 0.1 shot
It is now July and I am on 0.2 since June.
Would you beleive I still have not lost one pound?
I diet so severly and exercise like crazy, but nothing
The Dr. put me on a thyroid pill (levothyroxine) 0.05 but has not helped.
The dose is too low.
I am going for a blood test on July 31 and will see if he increases the growth hormone, the thyroid pill, or both.
As I am 100lbs. overweight, and should have lost SOMETHING in 4 mos.
Hello Auntie Em, I to have hypopituitary from a head trauma and had to fight with doctors to get treatment. My throid, adrenals and /gh are shot. I am taking Armour for my thyroid because your body NEEDS the T3 to function so you may want o do some reading on the benefits of /t3 and your weight. Since optimizing my thyroid my head cleared up and my weight began to drop on it’s own. I am alos taking HC for my adrenals as my ACTH doesn’t react to stress. In a couple of weeks I will be starting the GH but my doctor wants to get my thyroid and adrenals supported before we start as GH affects both. So since starting the GH you thyroid med’s may need tp be adjusted. Thyroid med’s cleared my head and tiredness the HC has help with the muscle pain now I hope the GH will help me build muscle back and get healthier. Judy
Hi Zashes,
Thanks so much for taking the time to pen a reply.
I would like to just ask you - what level thyroid meds are you taking?I am on levoxal, 0.05. Such a conservative dose, this is why I see no improvement.
GH - I am taking (2) clicks, which is 0.2
again, conservative dose
What do you take?
I also have to literally fight and cry to get my doctors to even listen and take me seriously!
One dr. had the AUDACITY to tell me "Why don’t you get gastric bypass?"
I said WHY?!!?! I DO NOT HAVE A PROBLEM CONTROLLING MY EATING OR EXERCISING, I EAT JUST 800 CALORIES A DAY, THE PROBLEM IS MY BODY IS NOT METABOLIZING ANYTHING!!
Can you imagine, Zashes? A doctor telling me to take a complicated short cut to lose weight?
Hi everybody.
I read all the posts and I feel blessed having to have friends where I can share problems and experience.
I noticed that the doctors sometimes just do not know what else to say for people like us. Hormones things are not a very straight forward thing, their (the hormones) work are quite complicated. So having to say about the gastric bypass, etc, etc. is because they do not know what else to say.
Bless to all.