If you click on the title of this post you'll go to a site about my medication and Adult Growth Hormone Deficiency (AGHD).
We've decided that replacement therapy is best for me and since my pituitary won't suddenly start producing it again, I'll be taking this for the rest of my life.
We've had some good news. Our insurance approved my prescription for Genotropin on the third week of March. Of course only then did they tell us they'd cover it like any other name brand prescription. We have a 30.00 per month co-pay but they'll 'review' it next year. However this year the Pfizer Bridge Program is going to cover the co-pay. I cannot express how much of a relief those two pieces of news were.
Another bit of interesting news is that on the day of my second stimulation test my IGF –1 was normal even though my growth hormone was low. Therefore my growth hormone could've been low for some time, weeks, months, years, there's is no way to tell. The initial growth of the tumor could've done the damage, the first surgery, the re growth, the second surgery, when and which of those events did it is anyone's guess. I'm lucky my IGF-1 was low in November because otherwise they wouldn't have tested me.
I'm also lucky for that in February I tested normal IGF-1 with low GH. They usually adjust dosage based on the IGF-1 results. If my IGF-1 had been low with low GH as is typical then they'd after I started taking Genotropin they'd have adjusted my dosage when it tested in the normal range which may have left me still deficient and feeling bad. Because of my February results my doctor said she'll have to figure my 'normal' to be in the top end of the typical range.
And so the daily shots begin. I received my first round of meds last week. Today a nurse came my home and instructed Chris and I on how to handle those shots. He gave me my first dose and for a man who used to say he hated needles, he did just fine. I feel a little shaky but okay.
It’ll take weeks to adjust to it, months to see improvement. My next appointment is in June. My blood work then will show if I’m good on this initial dose or if it’ll need to be adjusted. Still it’s nice to have a treatable cause and to finally begin the treatment.
4/6/10
How I Feel
My doctor wants me to write down how I feel now so I can come back after six months on Genotropin and be amazed at how much better I am. Within a year, she believes I’ll feel pretty darn good. I hope she’s right because right now it’s hard even to interact with my husband and boys. I won’t transform into a social butterfly in six months but I’d like to upgrade from extreme recluse to mostly a hermit at least.
My attempts at communication with anyone including friends and family have been dismal. Phone calls, letters and emails have been returned sporadically or not at all.
I'm exhausted. Everything is an effort, everyday, all the time. I go to sleep tired, I wake tired. No amount of rest changes it although getting little rest worsens it.
Concentrating, thinking, talking, even composing this is hard. I'm emotionally tired as well, moody, depressed and finding it almost impossible to interact with anyone. Because it's the deficiency of growth hormone that causes all the above depression medication helped little.
There’s nothing I can’t do but it’s frustrating for simple tasks to take extraordinarily long to complete. I write lists and try to work on something everyday because otherwise it feels like my life is passing me by while I sit in a fog of fatigue. It aggravates me for a simple thing like picking up some groceries, writing an email, doing the smallest thing on a home project, to take me hours to finish.
I feel 103 instead of 43. My skin is very dry and thin, looks like an old woman. My hair is fuzzy because it breaks and feels like straw. I walk most nights with the boys, usually a mile because I'm stubborn and refuse not to but even though we've been walking since last summer, its not easier.
I try hard to act normal but I know I'm failing. My poor hubby and kids need and deserve better and I feel I'm letting them down because I'm not ‘coping’ as well as I think I should.
Thats how I feel.
My attempts at communication with anyone including friends and family have been dismal. Phone calls, letters and emails have been returned sporadically or not at all.
I'm exhausted. Everything is an effort, everyday, all the time. I go to sleep tired, I wake tired. No amount of rest changes it although getting little rest worsens it.
Concentrating, thinking, talking, even composing this is hard. I'm emotionally tired as well, moody, depressed and finding it almost impossible to interact with anyone. Because it's the deficiency of growth hormone that causes all the above depression medication helped little.
There’s nothing I can’t do but it’s frustrating for simple tasks to take extraordinarily long to complete. I write lists and try to work on something everyday because otherwise it feels like my life is passing me by while I sit in a fog of fatigue. It aggravates me for a simple thing like picking up some groceries, writing an email, doing the smallest thing on a home project, to take me hours to finish.
I feel 103 instead of 43. My skin is very dry and thin, looks like an old woman. My hair is fuzzy because it breaks and feels like straw. I walk most nights with the boys, usually a mile because I'm stubborn and refuse not to but even though we've been walking since last summer, its not easier.
I try hard to act normal but I know I'm failing. My poor hubby and kids need and deserve better and I feel I'm letting them down because I'm not ‘coping’ as well as I think I should.
Thats how I feel.
3/1/10
Glucagon GH Stimulation Test
Again normal growth hormone level is 5 ng/ml. Glucagon raised my blood glucose from 84 (normal) to 172 (HIGH) in an hour as predicted then started to drop. This drop is supposed to stimulate the growth hormone. This drop can also cause nausea in a small percentage of people. (Me) A small percentage of people suffer it off and on for the rest of the day and the next. (Me) During the 4 hour test, GH should rise to 7-17 for a time. As last time my level started at less than 0.5, it remained unchanged for 2 hours, at 2 ½ hours it rose to 1.2, at 3 hours it dropped to 1.0, then dropped back to less than 0.5 the remainder of the test.
My endocrinologist reviewed the results and confirmed I have Adult Growth Hormone Deficiency. I have an appointment at OHSU on March 5th to discuss the pros and cons of GH therapy.
If we decide the pros of hormone therapy outweigh the cons then we wade into bureaucracy. Our insurance has already informed us it'll require documentation from my doctor supporting that it's medically necessary. Once they get that paperwork they'll 'review' it then IF they approve it they'll tell us how they'll cover it and what our cost will be. While I understand, since it's expensive, the insurance's desire to confirm it's necessary, it's frustrating not to have important information (our out of pocket cost). Why they couldn't state if it's approved it'll be x amount for you is a mystery.
My endocrinologist reviewed the results and confirmed I have Adult Growth Hormone Deficiency. I have an appointment at OHSU on March 5th to discuss the pros and cons of GH therapy.
If we decide the pros of hormone therapy outweigh the cons then we wade into bureaucracy. Our insurance has already informed us it'll require documentation from my doctor supporting that it's medically necessary. Once they get that paperwork they'll 'review' it then IF they approve it they'll tell us how they'll cover it and what our cost will be. While I understand, since it's expensive, the insurance's desire to confirm it's necessary, it's frustrating not to have important information (our out of pocket cost). Why they couldn't state if it's approved it'll be x amount for you is a mystery.
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