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Any Research on the Importance of Growth Hormone in Hypopituitary Children?
Yay! I get to be first! Hi Rumpled, The Wise and Wonderful! How are you doing?
I'm having a problem getting our insurance co. to cover G. H. for my son. My boy started growth hormone over two years ago with a different insurance co. Hubby lost his job, got a new one, and we went with the new insurance co. after making sure they cover growth hormone.
My son has been hypopit since 2007, had a craniopharyngioma resection in 2009. He is now panhypopit, since he developed D. Insipidus one year ago. He has only been getting testosterone for eight months. He wasn't growing well on the growth hormone he was getting, was losing bone and muscle fast, and developed scoliosis (he also has Joint Hypermobility Syndrome and orthostatic intolerance). He got his Vitamin D tested, and found out he had almost no Vit. D!
After Vit. D treatment, testosterone and a higher dose of growth hormone he has finally matured, his bones are growing, and years of digestive problems have resolved.
His endocrinologist has sent info to the insurance co., but the insurance co. medical director sent us a denial, saying growth hormone for my son has not been shown to be medically necessary! We are in appeal. We went back to my son's first endo clinic, to see if they can send his early pre-op test results, bone age, IGF-1, height and weight for age, etc. They are going to try to help us, but said they only prescribe G.H. for growth in children, not for other medical problems.
I can't believe one of the top hospitals in the country has a pediatric endocrinology group that doesn't believe growth hormone is important in children for any reason other than linear growth! The doctor we spoke with said some adults on growth hormone "feel better", but didn't seem to think replacement for adults was important! (My son's current endo is an adult endocrinologist who has researched the importance of G.H. for hypopit patients)
Hypopituitary children who are G.H. deficient can have constant problems with hypoglycemia, especially if there is deficiency of TSH and ACTH also. My son had hypoglycemia many times before his surgery, in spite of thyroxine and hydrocortisone replacement.
In fact, the insurance co. said they were denying coverage because my son had never done a G.H. stimulation test. The stim tests force hypoglycemia on the patient to see if the pituitary gland will respond - by releasing G.H. to correct the hypoglycemia.
The pediatric endo said they haven't given a stim test in 10 years. They don't do them anymore. Just IGF tests.
I do not want my son to do G.H. stim tests anyway. I believe, after what he's been through the last few years with autonomic dysfunction that he would have a very hard time recovering from any level of hypoglycemia, would need to be hospitalized with IV fluids and monitoring (which insurance might not cover since the test is usually an outpatient test).
It's so unnecessary anyway - he has no (or very little) pituitary function left - his docs should be able to prove this without yet another debilitating test, shouldn't they? My son has problems with hypovolemia now too, so he's debilitated by blood draws of more than two vials of blood! (Can't sit up for hours afterward)
Ugh. Anyway, I was wondering if you knew of any research papers that actually have proven the health benefits of G.H. in children. I did find one, that discovered many examples of a smaller than normal heart size in G.H. deficient children, but my son has had two echocardiograms in two years, and nothing was said about his heart being small.
This support group is a great idea Rumpled! I sincerely hope that many people will find comfort and knowledge here, to help them through the painful and confusing problems that surround having a pituitary disorder. Kudos to you Rumpled!
Enzy
I'm having a problem getting our insurance co. to cover G. H. for my son. My boy started growth hormone over two years ago with a different insurance co. Hubby lost his job, got a new one, and we went with the new insurance co. after making sure they cover growth hormone.
My son has been hypopit since 2007, had a craniopharyngioma resection in 2009. He is now panhypopit, since he developed D. Insipidus one year ago. He has only been getting testosterone for eight months. He wasn't growing well on the growth hormone he was getting, was losing bone and muscle fast, and developed scoliosis (he also has Joint Hypermobility Syndrome and orthostatic intolerance). He got his Vitamin D tested, and found out he had almost no Vit. D!
After Vit. D treatment, testosterone and a higher dose of growth hormone he has finally matured, his bones are growing, and years of digestive problems have resolved.
His endocrinologist has sent info to the insurance co., but the insurance co. medical director sent us a denial, saying growth hormone for my son has not been shown to be medically necessary! We are in appeal. We went back to my son's first endo clinic, to see if they can send his early pre-op test results, bone age, IGF-1, height and weight for age, etc. They are going to try to help us, but said they only prescribe G.H. for growth in children, not for other medical problems.
I can't believe one of the top hospitals in the country has a pediatric endocrinology group that doesn't believe growth hormone is important in children for any reason other than linear growth! The doctor we spoke with said some adults on growth hormone "feel better", but didn't seem to think replacement for adults was important! (My son's current endo is an adult endocrinologist who has researched the importance of G.H. for hypopit patients)
Hypopituitary children who are G.H. deficient can have constant problems with hypoglycemia, especially if there is deficiency of TSH and ACTH also. My son had hypoglycemia many times before his surgery, in spite of thyroxine and hydrocortisone replacement.
In fact, the insurance co. said they were denying coverage because my son had never done a G.H. stimulation test. The stim tests force hypoglycemia on the patient to see if the pituitary gland will respond - by releasing G.H. to correct the hypoglycemia.
The pediatric endo said they haven't given a stim test in 10 years. They don't do them anymore. Just IGF tests.
I do not want my son to do G.H. stim tests anyway. I believe, after what he's been through the last few years with autonomic dysfunction that he would have a very hard time recovering from any level of hypoglycemia, would need to be hospitalized with IV fluids and monitoring (which insurance might not cover since the test is usually an outpatient test).
It's so unnecessary anyway - he has no (or very little) pituitary function left - his docs should be able to prove this without yet another debilitating test, shouldn't they? My son has problems with hypovolemia now too, so he's debilitated by blood draws of more than two vials of blood! (Can't sit up for hours afterward)
Ugh. Anyway, I was wondering if you knew of any research papers that actually have proven the health benefits of G.H. in children. I did find one, that discovered many examples of a smaller than normal heart size in G.H. deficient children, but my son has had two echocardiograms in two years, and nothing was said about his heart being small.
This support group is a great idea Rumpled! I sincerely hope that many people will find comfort and knowledge here, to help them through the painful and confusing problems that surround having a pituitary disorder. Kudos to you Rumpled!
Enzy
I think our adult endo, who is a pituitary specialist, can set up an outpatient stim test with arginine, but the insurance co. specifically stated they wanted at least two tests, so I believe they are asking for both insulin and arginine tests. I guess this is standard procedure for a patient who is suspected to be G.H. deficient.
But, my son was a patient with the pediatric endo clinic at the very beginning of his illness, and there was no question in their minds that he was growth hormone deficient (following repeated measurements, IGF-1 and IGF binding protein tests, and finally, the MRI showing a 1.5 cm mass sitting on his pituitary gland).
They refused to put him on G.H. therapy of course, because of the pituitary tumor/cyst, and the adult endo, who took over after the surgery, (and is at a different clinic and hosp.) said their policy is to wait 1 year after, before starting G.H., which is what they did with my son. At that time, the adult endo did not do a stim test because there was no doubt in his mind that G.H. was needed, and our previous insurance co. did not question, argue, deny or demand proof, but accepted the expertise of our pituitary specialist.
I sincerely hope the pediatric endo can convince this new insurance co. that the stim test is not necessary in my son's case, but if not, I may just try to get him back on a policy with the old ins. co. Very expensive, but less expensive than buying G.H. without any insurance!
But, my son was a patient with the pediatric endo clinic at the very beginning of his illness, and there was no question in their minds that he was growth hormone deficient (following repeated measurements, IGF-1 and IGF binding protein tests, and finally, the MRI showing a 1.5 cm mass sitting on his pituitary gland).
They refused to put him on G.H. therapy of course, because of the pituitary tumor/cyst, and the adult endo, who took over after the surgery, (and is at a different clinic and hosp.) said their policy is to wait 1 year after, before starting G.H., which is what they did with my son. At that time, the adult endo did not do a stim test because there was no doubt in his mind that G.H. was needed, and our previous insurance co. did not question, argue, deny or demand proof, but accepted the expertise of our pituitary specialist.
I sincerely hope the pediatric endo can convince this new insurance co. that the stim test is not necessary in my son's case, but if not, I may just try to get him back on a policy with the old ins. co. Very expensive, but less expensive than buying G.H. without any insurance!
Hey there...
Sadly, the ONLY way I know to get GH covered is the stim test. Has he ever had it done - can you submit an old test?
IGF-1 is a good test, but it can vary a lot so it is not considered reliable enough to be definitive. I am surprised your doc does not do the test - except that I know some of the stim agents have become harder to find so they have been switching them up. I had arginine for mine and it is no longer available.
I am an adult on it - and I had to fight for a YEAR to get covered.
As for W&W... eh... always check everything - even what I write - the only wise I am for sure is a wiseacre! LOL...
Sadly, the ONLY way I know to get GH covered is the stim test. Has he ever had it done - can you submit an old test?
IGF-1 is a good test, but it can vary a lot so it is not considered reliable enough to be definitive. I am surprised your doc does not do the test - except that I know some of the stim agents have become harder to find so they have been switching them up. I had arginine for mine and it is no longer available.
I am an adult on it - and I had to fight for a YEAR to get covered.
As for W&W... eh... always check everything - even what I write - the only wise I am for sure is a wiseacre! LOL...
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