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Pituitary Problems Or Cushings

post #1 of 15
Thread Starter 
I've read a lot of on-line information but was wondering if anybody has any real-life experiences to share. For example, how were you (or someone else) diagnosed? How long did you have symptoms before you were diagnosed? What treatments have you undergone? Are things better now? Is there anything you know now that you wish you knew earlier?

Thanks in advance!
post #2 of 15
I'm not quite sure what you want info on, but as soon as I saw the word 'pituitary'- I was drawn to this thread.

Let me give you my story.....

I was always the 'little' kid that was short, and looked a lot younger then I am. They even kept me back a grade in Kindergarten because they wanted me to develop with the rest of the kids.

All through school I was called 'Shorty' because I was so short... I don't think I've really grown since I was like 12 or something!

When I was like 13-15 I began to get worried- I never went through puberty. Never got my period, never 'developed' like I thought I should....

I was told I was a 'late bloomer'!

When I was 17-18 the doctors finally realized- hey this girl has a problem. They put me on birth control to get my period- i've never had it naturally. I also started giving myself hormone injections daily- to grow.

They said the problem with me is my pituitary gland is too small.

FYI: I hate needles! hate hate hate!!!!

So after months of giving myself shots- and months of measuring myself and seeing NO results-whatsoever... I decided I would rather live short and happythe rest of my life then giving myself stupid shots!

To this day...I have no answers (and no period). I really need to go to a specialist I think instead of a regular doctor.. I just don't have the money or health insurance- so this has been put on hold.

By the way: I'm 22 now! And I'm 4'10"
post #3 of 15
I'm 14, and I haven't started my period. Everything else is fine, I am growing...Is it strange I haven't started??? (I'm getting fairly worried!!!)
post #4 of 15
Quote:
Originally Posted by Princess-Pickle View Post
I'm 14, and I haven't started my period. Everything else is fine, I am growing...Is it strange I haven't started??? (I'm getting fairly worried!!!)
No it's not strange... if you are worried I would ask one of your parents. But, at 14 I wouldn't be worried yet. Look at me- I'm 22 and haven't got mine yet. Now, that's when you get worried.
post #5 of 15
My identical twin sister has started though...
post #6 of 15
Quote:
Originally Posted by SwampWitch View Post
I've read a lot of on-line information but was wondering if anybody has any real-life experiences to share. For example, how were you (or someone else) diagnosed? How long did you have symptoms before you were diagnosed? What treatments have you undergone? Are things better now? Is there anything you know now that you wish you knew earlier?

Thanks in advance!
PM me ... Gigi the yorkie is Pre cushings .... ECKKK ....
post #7 of 15
Quote:
Originally Posted by Princess-Pickle View Post
My identical twin sister has started though...
Your ok kiddo. I didnt get mine until I was almost 16, Ive never been regular without the pill, yet everything continues to check out fine. Alot of people I knew got their period before they developed. For some reason i was fully developed before i got mine, I am a small girl too btw! You got some time b4 you need to be worried, if it really concerns you speak to your parents about having an exam with an ob/gyn.
post #8 of 15
Swampwitch I am not sure if you are asking because a human in your life my have an issue or a pet.

I can help with the human aspect. My middle son was diagnosised with a growth hormone (pituitary) issue when he was 5 (this past Nov.) He has almost no growth hormone output and probably been this way since he was very young.

When he was a baby he was real slow to grow or gain weight. Because of that he was labeled failure to thrive for 4 yrs. By that age I was really pushing all his doctors (we have a few because of his cleft) to find out why he would not grow. They tracked him real close for a few months. Finally they order a bone scan of his hand to find out what his bone age was. At age 4 he had a bone age of a 2 yr old. From that point they drew a bunch of blood. From that they said he may have a growth issue with his hormones so we had to have a special test done. This test took 2 hours plus several meds and several blood draws. When those results came back it said that he was barely outputting any growth hormones. Even when stimulated to put out this hormone he wasn't. End result was he has to take growth hormone shots 3 times a week for at least the next three years. When 3 years is up they will stop the shots for up to a year with close monitoring. If after that year is up he is not outputting any growth hormone he will have to go back on the shots.

We have been on this shots since Christmas and he is just now starting to get used to them. One thing I can say is before the shots he was always tired.
post #9 of 15
Phx I was reading your story and I had a question sorta. Did they ever tell you why the shots did not work for you? From my research on my son and his issue I learned once a child hits their teens there is a very small window of opportunity for growth shots to work. Basically once the growth plates close they will not help you grow. But even later in life we out put smaller amounts of these hormones.

One more question were you ever tested for Turner Syndrome? Turner Syndrome only effects females and could explain the lack of a menstrual cycle.

Here is some info on Turner Syndrome: http://turnersyndrome.org/resource/faq.html
Hopefully I did not step on any toes.
Quote:
Originally Posted by mybabyphx View Post
I'm not quite sure what you want info on, but as soon as I saw the word 'pituitary'- I was drawn to this thread.

Let me give you my story.....

I was always the 'little' kid that was short, and looked a lot younger then I am. They even kept me back a grade in Kindergarten because they wanted me to develop with the rest of the kids.

All through school I was called 'Shorty' because I was so short... I don't think I've really grown since I was like 12 or something!

When I was like 13-15 I began to get worried- I never went through puberty. Never got my period, never 'developed' like I thought I should....

I was told I was a 'late bloomer'!

When I was 17-18 the doctors finally realized- hey this girl has a problem. They put me on birth control to get my period- i've never had it naturally. I also started giving myself hormone injections daily- to grow.

They said the problem with me is my pituitary gland is too small.

FYI: I hate needles! hate hate hate!!!!

So after months of giving myself shots- and months of measuring myself and seeing NO results-whatsoever... I decided I would rather live short and happythe rest of my life then giving myself stupid shots!

To this day...I have no answers (and no period). I really need to go to a specialist I think instead of a regular doctor.. I just don't have the money or health insurance- so this has been put on hold.

By the way: I'm 22 now! And I'm 4'10"
post #10 of 15
Well, we knew from the beginning that the shots may not work. The younger you start them on someone the better chance of them working is... I was like 17 and it was a pretty low chance that they would work anyways.. I saw no results.

All of those tests that your son went through, I went through as well. They said that my growth plates weren't closed yet. That gave me hope. But they said all this when I was like 17-18 and I haven't had tests done since (money issues).

I don't think they ever mentioned Turner's Syndrome. I went to a lot of child specialists as a kid so I would 'assume' (which I know you are never to do) that they are specialists and would know what to look for.... I'll read over that info though Thank you!

I think I have come to a point in my life that I just accept myself. I always hear the line "Oh you look like your 12" But I'm actually 22 So I get used to it... for awhile it really really hurt me and I would cry daily because of it- but now it's just me! My friends have nicknamed me Umpa Lumpa (charlie and the chocolate factory)

If you ever want to talk more about this, feel free to pm me I don't bite.... (well not hard!)

Quote:
Originally Posted by Ping View Post
Phx I was reading your story and I had a question sorta. Did they ever tell you why the shots did not work for you? From my research on my son and his issue I learned once a child hits their teens there is a very small window of opportunity for growth shots to work. Basically once the growth plates close they will not help you grow. But even later in life we out put smaller amounts of these hormones.

One more question were you ever tested for Turner Syndrome? Turner Syndrome only effects females and could explain the lack of a menstrual cycle.

Here is some info on Turner Syndrome: http://turnersyndrome.org/resource/faq.html
Hopefully I did not step on any toes.
post #11 of 15
I used to have a friend who had found out in her 30s that she had a pituitary problem -- nobody had ever bothered to question until then why she was 70 pounds and 4'7". She didn't mind it a bit, though -- and despite her small stature, she had the chutzpah of a giant!

She told me that one year at Christmas, an uncle from out of state arrived to visit, scooped her up in his arms, and said, "And how old are you now, sweetie?"

She glared at him and said in her deep, husky voice, "Twenty-two."
post #12 of 15
Thread Starter 
Thanks for the input, everyone! I'm talking about a human, but thought any experiences would be good.
post #13 of 15
My sister is undergoing testing right now as her pituitary isn't producing one of it's hormones (blood level of cortisol should be in the 300-500 range i believe, and hers was 30). She's undergoing an MRI on saturday as they believe she probably has a benign tumor on her pituitary. While the surgery is risky, if it's successful she should recovery fully.
post #14 of 15
Quote:
Originally Posted by Renny View Post
My sister is undergoing testing right now as her pituitary isn't producing one of it's hormones (blood level of cortisol should be in the 300-500 range i believe, and hers was 30). She's undergoing an MRI on saturday as they believe she probably has a benign tumor on her pituitary. While the surgery is risky, if it's successful she should recovery fully.
that everything is ok, and your sister gets better. Keep us updated!
post #15 of 15
I have had horses that have had cushing's disease, but I don't have any experience with humans.
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