My oldest son, now 14, has had type 1 diabetes since he was six. His A1cs have been in the 7.0 to 7.9 range; only one exceeded 8. Over the past two years, he has only grown 1 inch and gained 1 pound. We had his thyroid checked and had him tested for celiac disease; both had negative results. However, his growth hormone was extremely low. We anticipated a bone age test below his current age, but it was almost dead on to his current age. The recommendation was to start growth hormone shots. I continue to be told that they are extremely safe and the only risks are increased blood sugars, which I could combat through additional insulin. Would you recommend growth hormone treatment? What are its risks/side effects?

It certainly is not the scope of this forum to make diagnoses on growth hormone (GH) deficiency and to debate the pros and cons of how this diagnosis is made. That said, it is difficult, without seeing the patient and knowing the full extent of the evaluation that your physician performed, to make confident recommendations. You also should read other similar questions on this forum.

Your son is being followed by a pediatric endocrinologist, yes? If not, I’d ask for a referral. I know a good pediatric endocrinologist in Sioux Falls, so, if he has been advising you, that is good.

I am going to address the issue of GH first and then focus on some other issues. GH is a very safe medication, but ALL medications have “some” risks. You will need to talk to your pediatric endocrinologist and review the risks in detail. In general, I categorize the risks of GH into three groups: the ones you WILL see; the ones that happen frequently enough that we look for them; and the “theoretical” risks.

You WILL see that GH is extremely expensive (I think of that as a side effect). Dosing is commonly based on weight and the expense will increase as the child grows and gains weight. Depending on your child, costs might start at $30,000 to $60,000 per YEAR. GH is typically continued until the child stops growing. If your son has a bone age of 14 years, he could be on GH for two to three years. Private and public insurance typically has paid for GH but your circumstances might dictate otherwise. It has become more difficult in the last few years for physicians to get insurance to authorize GH. There are foundations and pharmaceutical programs to help offset the costs.

You WILL see that GH is given by injection, just like insulin, although typically given just once daily. You cannot mix the GH with insulin. Normally, I run through all issues of giving injections but, since your family has dealt with diabetes, I assume you know all about needles and disposal, etc.

Appetite typically increases with GH but, initially, many patients actually lose weight a little at the beginning. GH not uncommonly enhances muscle tone (not really size or strength). Increased appetite may certainly affect glycemic control. GH affects insulin a bit negatively, too, thus also disturbing glycemic control. As your doctor told you, this most often is combated by giving overall higher doses of insulin.

Common side effects of GH that you and your doctor will be on the lookout for include some potential bone issues: GH can enhance (not “cause”) curvature of the back (“scoliosis”) in someone predisposed. This should be assessed clinically now and routinely when on GH. If there were a clinical suggestion on exam, x-rays would need to taken to confirm. Depending on the degree or rate of curvature change, a special back brace may need to be worn. I’ve had two patients who needed surgery. This is an uncommon issue but a serious one. GH typically is not stopped if this occurs. Another bone issue is a sort of “slippage” of the growth plate at the top of a hip. This manifests as an annoying or initially mild hip or thigh or knee pain. You would need to talk to your pediatric endocrinologist about this, too. If this occurs (and it happens very subtly and gradually), it would actually be viewed as an issue to see an orthopedist urgently! Again, this issue (abbreviated SCFES) is not so common but serious and commonly GH treatment is continued.

Other reported GH side effects to look for include increased number of skin moles (in those predisposed) and sometimes a mild swelling of the breasts (but guys in puberty often get this anyway) that typically self-resolves. There are a couple of others that your own pediatric endocrinologist can describe to you.

“Theoretical” issues include the concern as to whether GH will cause things to grow that you don’t want to grow, such as a cancer cell or a tumor. Statistical analyses for a number of years and hundreds of thousands of patients have not shown a direct cause and effect. HOWEVER, some patients may be at higher risk for this concern, including children who have had previous cancer or radiation therapy, children with known genetic conditions that are associated with cancer, and perhaps being of Japanese extraction. Again, your own pediatric endocrinologist can reassure you.

So, my questions to you regarding your son include: what is your son’s degree of puberty? At 14, he should me moving right along there, but at least have some changes to include early enlargement of his testicles (only your pediatric endocrinologist could tell easily). Pubic hair is important, but not as important as testicular changes. Is there a family history of “late puberty?” If there were late puberty in your son, this could be a superior avenue to pursue. Androgens (testosterone and other similar male hormones, whether natural or synthetic) are far cheaper than GH and some can be given orally or even topically. If your son is “very” pubertal, then maybe there will be discussion about “slowing” puberty to allow more time to grow before the growth plates close, perhaps in conjunction with GH.

I’d ask your doctor if they reviewed the bone age x-ray themselves. These are sometimes misinterpreted by radiologists not used to reviewing them.

What kind of test was done to screen for celiac disease? One of the better tests is the “anti-endomysial antibody test” or the “tissue transglutaminase antibody test.” The “anti-gliadin antibody test” is not good enough. When was he last screened for celiac and thyroid diseases? You indicated that your son’s GH level was extremely low. How was this done? Sometimes a screening test, called “IGF-1” is done as a GH screen and families confuse this with GH itself. It is not. It is a hormone produced because of GH’s action. But, other things can cause a low IGF-1, including poor nutrition in someone who is not gaining weight. What are your son’s appetite and bowel habits like? Lots of diarrhea and poor absorption of nutrients could cause all your son’s symptoms, including easy control of his diabetes.

The bottom line? Get a good dialogue with your doctor, have your list of questions ready and spend some time discussing matters.

I hope this helps. Please let us know what you learn!

DS

[Editor’s comment: See also another previous question on growth hormones.

BH]