Hypopituitarism Support Group

So I just started desmopressin and was curious if any of you also take Florinef. Do you get swollen ankles or any signs of water intoxification? What is your dose? My doc has me on .1mg desmopressin twice a day and .1mg florinef a day. Thanks. Just curious if since getting on desmopressin if you guys decreased your florinef dose or what labs you go by to do this or if you just go by how you feel. Thanks.

Sorry it has taken me a bit to get back to you - I've been on a bit of a low spell.

When my dose of desmopressin was too high, I'd get puffy. Sorry I can't help on the florinef ??. I have never taken it. Be careful you don't get too fluid overloaded. It can affect your blood pressure and your sodium levels and that is a bad thing! How are you feeling since you started on it?

Post edited by: hypomama, at: 04/12/2012 07:45 PM

I am no longer dizzy or urinating frequently. But I am still tired. My IGF-1 level came back low several times and then just recently it came back 230. I have friends on growth hormone and their IGF-1 levels do not budge at all and I have read several studies showing the IGF-1 test is not a good indicator of serum growth hormone levels since IGF 1 is just a binding protein produced by the liver that is influenced by many other factors and hormones. Hell I even read a study that said that many CFS patients had normal IGF-1 levels but deficient growth hormone levels as measured on an insulin tolerance test. My endocrinologist just took an IGF-1 level and it came back mid range. Now I have to convince him to do an insulin tolerance test to see my GH output. I was on GH before and felt great (though it was through a Florida pharmacy that did not accept insurance). That option is no longer available. So I am hoping I can get the endo to run an insulin tolerance test.

This isn't a huge help as I don't take desmopressin. But I am on florinef and gained 5 lbs immediately on that. I was really dehydrated (and still am, less so tho) and definitely consider those 5 lbs to be water weight.

The IGF-1 is a more accurate blood measure as the actual growth hormone changes so rapidly you can't get an accurate picture of it, that is why they use IGF-1 for the measuring tool. 230 is pretty darn good! At that level you will be hard pressed to convince them to do an ITT level.

Have you worked with a counselor that specializes in chronic health issues for bio feedback for fatigue? Have you had a sleep study and a sleep latency study? My sleep latency study showed that I fell asleep within 6 minutes of lying down for a nap 6 times during the day - they said extremely unusual - I said way normal for me. They put me on Privigil/Nuvigil (same thing, different name) to help me stay awake and function during the day.

I have several studies showing that IGF-1 is perfectly normal in young people such as myself with growth hormone deficiency. I literally cannot gain weight and I am extremely fatigued all the time. I was able to order pharmaceutical growth hormone through a doctor in Florida legally (which I am no longer able to do) and I felt unbelievably great on just 1 iu per day. I know that is what is causing my fatigue because workouts make it worse and I stay extremely sore whereas on HGH this did not happen and my fatigue was absent.

My insurance does not cover Provigil or Nuvigil at all for any reason (lame united health care). I have tried it though out of pocket which was ridiculously expensive and it did nothing for me even at a dose of 2 pills. I have also been rxed adderall before and that does nothing for my fatigue nor does cymbalta or lexapro. I do have a prescription for gabapentin which my doctor uses to improve sleep and that does not help either even though it does make me sleep soundly.

Again I am quite young (barely older than a teenager), and in the studies I read of younger people their IGF-1 was normal, as was many in the studies on all demographics. My endo said he would run the ITT. He even said the IGF-1 is not a very accurate measurement of GH. I have a friend who no matter how much GH he took his IGF-1 remained at 130. IGF-1 is influenced by other hormones like testosterone, which I am on. My insurance requires the ITT anyway to pay for the GH.

My sleep is quite good on gabapentin. Otherwise it sucks. But even when I do sleep like a baby I wake up extremely tired still.

Post edited by: Spareme, at: 04/17/2012 10:27 AM

Post edited by: Spareme, at: 04/17/2012 10:29 AM

What is your dose of florinef?

does anybody have problems keeping their electrolytes balanced when taking DDAVP? I've been taking DDAVP for about 18 years and for the last year I've been having problems with overdosing when I'm taking the same dose I've always taken.