Hypopituitarism Support Group

I just found this site and I think it is wonderful! I am a 28 year old female and was diagnosed with panhypopituitarism at birth. I was born 6 weeks premature and my pituitary gland wasn't fully developed. I've been on synthroid since birth then gradually started GH injections and premarin/progesterone to start puberty. I also started prednisone but then switched to dexamethasone at age 18. I went off the GH at this time because felt insecure taking shots in college and didn't want to be different.

Also at that time I switched from my pediatric endo to an adult one. Unfortunately she didn't know how to treat me correctly for my condition and it took me about 10 years to realize it - so terrible.

Now I have been seeing a WONDERFUL new endo who had me take all types of blood tests, pituitary MRI, bone density scan. He has me on the RIGHT hormones, back on GH (which I love), DHEA and recently is gradually getting me off the dexamethasone and starting hydrocortisone.

My question for the group - I hate taking these steroids. They've thinned my skin, make me bruise easily and i feel that they've bloated me and made me gain weight especially in my middle. Will the GH help counter-act some of these awful side effects?

Other than that my quality of life has seemed to improve drastically, I am just waiting for all of these hormone changes to even out and I am thankful to have found a dr who actually cares!

Welcome!

From what I hear, most gluco steroids (HC, dex, pred) make you hungry. More hungry than needed, so you can end up overeating, hence the weight gain. If I were you, I'd stock up on foods that I like but don't add oodles of calories...fruits and veggies make you fuller but hard to gain weight on them. You gots to eat, but you don't gots to eat gravy on fried stuff.

Do you find growth hormone affects your energy level?

hi

i have two kids , both have familial hypopituitarism, my sis age 24 now has the same issue.

as i was raeding ur story i thought as its that of my kids. my daughter is on thyroxine and GH , she is 5.5 years old and 110 cm in height, almost it has bben two yeas on GH treatment. my son is 2.5 and perhaps will soon start GH.

ITS A LONG JOURNEY full of tears and obstacles

my sis is going to be married now and my concerns

are abt fertility. whats ur plans abt marriage and fertility.

keep in touch

You are right the HC and Dexa make you hungry, but I keep a pretty healthy diet and exercise regime and still notice the weight gain. My biggest issue with those drugs are the way they thin my skin but the growth hormone has helped A LOT and I do notice a difference. I have only been back on it for about 30 days so I am interested to see more improvements.

As far as marriage and fertility - why would this condition change my opinion about either? I don't see this as any sort of set back regarding either of those and I plan to marry and have kids like any other normal adult. I did see a fertility doctor about 5 years ago and it will be hard but they will just need to change my meds. Plenty of people with panhypopit have conceived. I am not too concerned.

Since I was born with this condition, I have never viewed it as a struggle....just a way of life....it is what it is and as long as I am seeing a good doctor who actually knows what he is doing I am happy! I am blessed that I found the doctor I am seeing now and that all of my levels are getting back on track.

I hope that helps.

Hi VAgirl,

As you probably know, there is a fine line between too much steroids, and not enough. Ive noticed its pretty easy to cross over either way. For me, when my hunger starts getting out of control, I cut back a bit on my steroids, until it gets back to normal...LOL

Ive only been panhypo for about 2 1/2 yrs, so I havent noticed the thin skin.. but at times I do seem to bruise very easily.. but I was relating that to too much cortisol as well. Ive been on GH for 8mos, and it made the world of difference in my quality of life.

Im so happy you found a good endo.. sometimes it takes people years to be heard.