Hypopituitarism Support Group

Hello! Sabra invited those of us on the Adrenal Insufficiency group to come over here, so here I am.

I was diagnosed with Sheehan's Syndrome in August and have been going through lots of tests and medicine adjustments ever since then.

During my 3rd child's birth my blood pressure bottomed out. They almost lost both of us. It was at that 6 week check up that I was diagnosed with high blood pressure and hypothyroidism. It wasn't until 2006 that I began to have other problems. I had what I'm sure now was an adrenal crisis, but the doctors could not figure out what was wrong with me. Looking back it's easy to piece together all the strange symptoms I've had over the 20 years since that birth.

Anyone else here with Sheehan's?

I have it as well. I have had it for over 31 years but did not start treatment until 2 years ago. I have panhypopituitary which means that I am making little to no pituitary hormones. The mishmash of hormones you take to compensate for each one you are missing or low on takes a little getting used to, but I would rather get used to that and start feeling better than the latter.

Mine occurred after a severe hemorrage after a late second trimester miscarriage years ago. I knew from that moment on that something had happened to me but I didn't realize what until about 15 years ago. It took 13 years and 5 endocrine to get one to test my pituitary function. I am glad I was persistent. My biggest problem right now is the damage that occurs when you go undiagnosed so long. I developed diabetes, type 2 that reversed completely once I was started on hydrocortisone for my adrenals. But the docs figure I had it for 10 years untreated prior to that. My thyroid problem and pituitary problem masked the signs and all my fasting sugars were normal so it threw everyone. I am being tested now to see how bad the nerve damage to my exremities is. Also my kidneys jumped to stage 3 and are filtering out too much of my protein so I have to make sure I eat enough protein.

I had a cerebral hemorrage about 9 months after the miscarriage so I kind of had a double whammy in the blood loss department. But as you can see, I am still here and plan on being here a long, long time. After all, there are 5 endocrines I need to make feel real, real bad for blowing me off all those years ago. What a hoot! I can write revenge, but I could never actually take revenge. That must be my faithful half kicking in. Hang in there. Susan

Hello, After I had my son 21 years ago my blood pressure bottomed out and both of us almost died. So I was diagnosed with Sheehan syndrome also. I have been on replacement therapy ever since. I just started taking growth hormone about a year ago with my new endocrinologist, she is wonderful. Life is great now except I have been diagnosed with essential tremor and I have to find a treatment that is tolerable. I tried propanolol and that stuff wigs you out and I went off of it. I see my neurologist tomorrow. I am here if you need me. I will check back often.

I really want to talk to my endo about growth hormone when I go back at the end of the month. All of my life I have had problems with keeping my weight stable no matter what I do. I have read that this can be a symptom of needing GH. It seems like I have to be actively losing weight or else I'm gaining. I can't seem to just maintain. It's very frustrating.

Well I am on GH, cortef, levothyroxine, dhea and a few million other things. I am so glad to see people who were diagnosed within a reasonable period of time. I wish I had been, but I am hanging in there. I will be 56 tomorrow and don't care who knows because I made it!! YEA! I am having some problems with my kidneys filtering but so far my GFR is staying at stage 3. I am glad about that as well. I am ok with not being able to reverse most of this as long as we can at least stop the progression of everything. I thought the GH wasn't doing anything, so I got permission to try reducing it by .1 and man alive. The muscle pain and cramping was horrendous, so I went back to my usual dose. I don't think I will try that again. The research I read says it will take about 10 years on it to rebuild all the muscle mass I lost from not making any for 28 years. My weight is up and down still but now I only fluctuate 2-4 pounds. When my cortef and thyroid stay balanced (at the same time) I start losing about a pound a week depending upon how much exercise I am able to get. Exercise helps the muscle pain and everything else. I have to admit I am less frustrated right now than I have been in a while. Hang in there everyone. Susan

I was reading a medical journal (my new hobby, how very exciting!) about hypopit caused by Sheehan's. What was striking is that the blood loss could have happened DECADES before and still ended up causing full blown symptoms years later.

Not too many conditions go that far back, and the doctors who wrote the research seemed to be surprised themselves.

So any woman who had postpartum blood loss AT ANY POINT IN HER LIFE should be told to have her pituitary checked if she experiences any symptoms that indicate low pit function.

And of course, almost everyone as they raised a kid or 3 can be said to have symptoms of hypopituitary function. After all, fatigue is the one of the main symptoms. Ever met a parent who showed any signs of .....

Fatigue???

So, until symptoms get severe, that may mean there's quite a few undiagnosed folks out there, no?

I delivered my daughter in 2000... lost blood... we both almost died. They didn't get all of the placenta .. I had a DNC... Thank goodness my doctor stuck around. I was not diagnosed with Sheehan's until 2007. In between that time I was unable to have another child, I went to see a fertility doctor in 2003 to find why i could not get pregnant and when they scanned me my ovaries had shriveled up from lack of hormones. I developed an arrhythmia, saw a cardiologist had an ablation for it. I started gaining weight, went to an endocrinologist... they thought I had type 2 diabetes and PCOS. Finally my new internist called for a MRI. It was discovered the right side of my pituitary gland does not function and the left side is at 2/3 rds capacity. I do take light hormones but not enough... It seems lack of estrogen causes bone loss... found in Jan. 2011. Now having issue with border hypothyroidism... Arrhythmia... again...Very high blood pressure found last week...I just turned 40...Get an MRI... medical bills are huge for these problems plus it can make it hard or impossible to have children again. I was really depressed when that happened but now i believe i am okay with it... I am so lucky to have my Skye I just wish they would have given me a heads up that this could happen. I was a good c-section candidate...

Spacy,

Glad you found out what it was in time to do something about it.

You said:

I am so lucky to have my Skye I just wish they would have given me a heads up that this could happen. I was a good c-section candidate..

I think it's healthy to focus on what is good in your life!

But it does seem that since they know this connection, it ought to be considered before high risk pregnancy or after every occasion when a delivery experiences heavy bleeding.

If you had been told it COULD lead to hypopit, you would have had reason to suspect it. They call that a 'high index of suspicion'. When uncommon diseases are diagnosed, it seems that the 'index of suspicion' is likely the thing that can most save your life!

I wish they had found mine early. I am now steroid dependent and having all the bad side effects, like full blown cataracts in under a year, hearing loss, bone loss to the point of having 2 joints replaced, a knee in April 2011 and my hip next week. I have panhypopituitary which means all the pituitary hormones anterior and posterior are affected. It is a lot more difficult to control. I had symptoms immediately after my miscarriage but no one realized what was happening. I feel bad for my 84 year old father who was a high risk OB-GYN at the time. He was in another state when this happened, but his old partner took care of me. He is now feeling a little guilty because no one figured this out sooner. He shouldn't. When you read the journals you realize most docs don't think of this.

Sue, sorry to hear that!

I'd love to find a way for endocrinologists to recognize patterns of gland dysfunction BEFORE they become disabling. It might even involve listening carefully to patient's symptoms and not taking the perspective that it's likely nothing...they could run some simple blood tests for some of these pituitary conditions (not all, for sure, but some).