i'm 16 years ld and had recentaly got diaganosesd with panhypopituitarism on june 7th. It's taken 4 months to diaganose. I went to my pediatrition, a cardioligist, a roomatologis, pulmanologist (at the beginning, around march i was having breathing trouobes), and finally an endocrinologist (iv'e been to two, one of them said i was bullemic and that caused all my fatigue, weightloss, hypoglycemia, low blood pressure and heart rate- wrong!). But finally we found an endo that auctually believed that there was something wrong with me. He did ACTH testing and found that i have secondary addison's, GH testing and found my GH difficancy (btw i'm 5'6''!), And he also said i have a hypothyroid, and probably some of my female hormones are insufficiant because i haven't had a peroid since 2 days before everything started happening. I just had some questions and was wondering if anyone could answer them. 1) Does anyone else have secondary addison's and low aldostrone too? 2) How long does it take to be feeling better continually thought the day from taking predisone, synthroid, and Fludrocort? 3) What changes do you feel after you start GH? 4) In the long term, do you have trouble gaining/ loosing weight or are you more susciptible to be thin and underweight? 5) Does any one else have raynauns disease, and did the medicine for panhypopituitarism cure it? 6) Has anyone had breathing problems from this? 7) Has anyone had double vision and does not have a tummor? my endo did an MRI and everything came back clear, he said my cause was auto ammume. Thanks for your help, these are questions i've just been wondering for the past week.

1) Does anyone else have secondary addison’s and low aldostrone too? Sadly, I don't. So I can't help you there. 2) How long does it take to be feeling better continually thought the day from taking predisone, synthroid, and Fludrocort? They have you on prendisone? Do you know why it's not cortisol. Just make sure you don't have any side effects. 3) What changes do you feel after you start GH? I was off GH for about 5 years and as soon as I got back on it It felt like I had a major sugar high. It was so awesome :) 4) In the long term, do you have trouble gaining/ loosing weight or are you more susciptible to be thin and underweight? I was on prendisone for about a year and it made me under weight, but cortisol or cortef made me over weight. 5) Does any one else have raynauns disease, and did the medicine for panhypopituitarism cure it? No 6) Has anyone had breathing problems from this?No, sorry 7) Has anyone had double vision and does not have a tummor? No sorry. If you have any questions feel free to ask. We're here as a support group to others :)

Thanks for answering, i found some of that really helpful. You said that you were on prednisone, but then you got on Cortisol or Cortef. why did you switch? I'm trying to learn about each medicine and how they work for others because so far, i've been on predisone for a week and wasn't sure if it was because i just need to give it more time, but i always feel bad and really tired in some part of my day. However, other times i feel a lot better :). I still haven't started GH, so that might be part of it though.

Hi Halee 1) Does anyone else have secondary addison’s and low aldostrone too? .....endo said mine is adrenal insufficiency and low blood sugar. 2) How long does it take to be feeling better continually thought the day from taking predisone, synthroid, and Fludrocort?.....it took me about more or less 3 months. I wasn’t sure whether levo or cortisol that made me feel better, coz I started levo and cortisol on same day. I assumed both :). 3) What changes do you feel after you start GH?.....haven’t started yet...financial reason. 4) In the long term, do you have trouble gaining/ loosing weight or are you more susciptible to be thin and underweight? .....Been about 8 yrs now, my weight is equally balanced, not fat neither thin. Endo said it’s because hypothyroid and hypoadrenal is balancing each other in terms of weight issue. 5) Does any one else have raynauns disease, and did the medicine for panhypopituitarism cure it?....No raynauns. 6) Has anyone had breathing problems from this? I have asthma (minor)…I’m not sure if it’s coz of panhypopit. But I can easily get flu, cough...very easily. Some said auto immune had weaken out if we have hypothyroid / hypoadrenal. 7) Has anyone had double vision and does not have a tummor? my endo did an MRI and everything came back clear, he said my cause was auto ammume. …Yes. Nice to meet you here. I continuously learning from everybody about this disease. Sharing it with others helps me a lot.

Hi Rose, I am happy to finally find someone else that had double vision. With everything i've read i can't find that as a symptom (unless there's a tumor) and i was starting to wonder if it wasn't connected ( wich i doubted cuz it started in the middle of all my other symptoms), But my doctor said that my cause was autoimmune too. So how old were you when you got diaganosed? Since i got diaganosed at 16 and have alredy grown, when i tell people i have GH difficiancy they laugh cuz i'm 5'6''. i'm not the typical case i guess lol, cuz the very first time i came to my endo he was suspecting Addison's only because he looked at my growth chart and was like i don't think your difficiant in your growth hormone. But when i responded to the ACTH test with a low base cortisol that doubled, he did the test and found out that i auctually was difficiant (alon with the other hormones in the anterior pituitary),

Hi Halee I was 20 when I was diagnosed. I had an accident with head trauma a year before. It seems that the disease developed slowly. I’m glad too.... knowing that there are others who have double vision issue. It release me from wondering why. The endo asked me to take GH because they noticed that I was very weak and lethargic. They said GH will be able to give me stronger general health and to support the bone and muscle. As you said, you already growned when the disease started, guess you’re lucky in this case .

ya i am lucky i got it after i grew. As far as the GH goes i might auctually get to start it next week! Elli Lilly called the other day and said that i quallified to get 3 free shots a year while the insurance was still aproving medical nesicity stuff. So hopefully that will help all my soreness. Some days i feel likei'm getting a stress fracture on my ankel it hurts so much. And i have back pain an all my muscles hurt. Which isn't good cuz before i got sick i was an awesome softball player (i alredy hav college coaches looking), but i can't play at my best if i can barely move. so i am deffinatly excited cuz i'm like 90% sure that will help with all that. Then i can finally start training again. :) So just wondering about the double vission, does that go away?

_So just wondering about the double vission, does that go away?_ Suprisingly haven't got it for the last 5-6 months. Btw, I have it on and off. But I'll be very careful when driving, I'll be on the slow lane most of the time. How about you?

Mines on and off too. It can affect one eye or both eyes at a time. Its worse in my right eye most of the time. And i think it gets worse at night, but it still happen anytime And it hasn't went away yet, but i've only been on meds for 2 weeks. When i first started having doube vision, my eye doctor said i develpoed astigmatism. I'm not quite sure if thats right considering it's on and off and everything else going on, but idk. I think it'll get better with time probaly. Exciting news- My HGH arrived today, i'll start tomarow! I'm realaly excited to see how i feel after i'm on that too. :)

Yeah...my doc said the same thing about astigmatism. Glad to know that I'm not alone in this :). Your HGH....I'm happy for you. I know from my readings that it'll give us lots of positive effect after taking it. Enjoy yourself.