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T1D with hypothyroidism and Adult Growth Hormone Deficiency Syndrome

I’m wondering if anyone else here has been diagnosed with Adult Growth Hormone Deficiency? I have been T1D for 33 years now, and Hypothyroid for 10. At any rate, 4 or so years ago, I had daily severe lows that were not helped by adjusting my insulin (I am on a pump). I don’t even know how many times my now-fiance had to help take care of me, or the paramedics showed up to my work before my doctors were able to come up with SOMETHING to diagnose me with. At first, she thought that I had cancer on my thyroid or pancreas, so I had multiple MRIs and CT scans that showed that I had nothing abnormal in my body. She performed different blood tests to determine what hormone or other regulator might be out, but the only thing that she found deficient was IGF-1 (I think that it was 1, it might have been 2), and the only way to help that was to take growth hormone. I had also, during this time, gained about 15 pounds in a couple of months, and although it might have been partly because of the increase in carbs for lows, at that time I was monitoring my levels and my eating patterns very closely. At any rate, I started the growth hormone, and things have been great since I’ve been on it, and my IGF levels have been good. The only sort of questionable things about this are that growth hormone is known to increase blood sugar, as well as help you to lose weight (which I lost most of that weight). The other oddity is that when I have had to change insurances or when I have had to wait for that yearly ok from my insurance to even have the meds covered (it’s sometimes lapsed 3 months), I only start getting those severe lows after about 3 months of not taking the medication. I find this weird, but I don’t know the methodology behind this. Also, children are usually the ones that are diagnosed with Growth Hormone Deficiency, so it’s weird to be an adult with it, especially since I have to explain to different people at the medical companies that I am not caring for a chile with the deficiency, but that I am one!

Any thoughts?

  • #122070
  • @xxandi…Sorry about all these difficulties, especially having to skip necessary medications. I’m not familiar w growth hormone given to adults. It sounds like the growth hormone is vital for your bg control.
    Where I am, insurance will pay w a dr’s letter stating why you need the meds.
    I really hope you can get your meds w regularity.
    I also have thyroid problems. In 98 I was dx’d w Graves disease- (hyperthyroidism)
    After the second ablation, my life went to hell. I gained 35lbs in a mo. I was so tired I couldn’t take care of my family, and finally after several yrs I had to stop working.
    The bright side, I could be a full time mom.
    Throughout the yrs I’ve said I was once a healthy person who had diabetes, now I’m just a shell.
    I’ve learned to adjust and I’m starting to do more. I’ve tried to find others w thyroid problems, but everyone says they’re great and thin. I use to be but now I try everything and the wt won’t budge.
    Please try to get your insurance issues solved.
    It makes me angry that you have lapse in something very important.
    I couldn’t last without my thyroid meds.
    Is Medicare an option?

  • #122398
  • Thank you for your story! I’m so sorry that your thyroid took a dump. I know that Graves sucks, too. There’s no medication help? I didn’t even realize that Diabetics could have hyperthyroidism, and not just hypothyroidism. I thought that hyperthyroidism caused weight loss though. So I don’t even know what to tell you about the weight gain, nor can I think of a reason why, other than maybe it’s a hormone imbalance? I usually don’t meet skinny T1Ds, but nor are they overweight- although I do have one coworker who is super skinny (but he’s not in good control, either), and one who is built- he looks overweight, but man, he has muscles! LOL.

    I hate having to go through the rigamarole each year with my insurance company, but it’s my company insurance and have to do what they say. I do have prior authorizations for many of my medications (insulin, test strips, growth hormone) but it’s just a pain when they expire because you never know until it does and you can’t get your meds. I honestly think that people who ARE sick have it worst, because although it seems that everyone wants to help us,they really don’t. I have a friend who is T1D who doesn’t regularly fill his insulin or take it because of his insurance not covering what he needs. He’s also kinda poor, which doesn’t help. I feel that if I didn’t have a decent paying job that I’d be in his shoes, and I most definitely have been about 15 years ago. Medicare is not an option, since I am not disabled, and I have 28-30 years until retirement.

    Good luck to you!!!

  • #122400
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