Adrenal Insufficiency Support Group

I am almost 56 now, but was diagnosed with Sheehan's Syndrome only 2 years ago. Talk about being treated like a psych case. I had a second trimester miscarriage with haemorrhaging at age 25 and immediately lost all female hormones, gh and thyroid hormones. No one thought you could get Sheehan's from a miscarriage so they blew off my symptoms as stress. You have got to be kidding me, Stress??? I am an ICU RN so I knew from the start that was a crock. I started reading and researching my symptoms as things got worse and worse. Then I found out I also had Hashimoto's thyroiditis with an anti-thyroglobulin antibody. That took 38 years to diagnose.

I have had to fight for years just to get an endocrine to test my pituitary because it looked normal on MRI. Well, I have since learned that most of them do look normal, because Sheehan's Syndrome is a disorder of function. You lose function in that gland. I am now low or non-existent on all anterior and posterior hormones so needless to say, the secondary Addison's disease came with this. I am steroid dependent, on growth hormone, thyroid hormones etc., etc.

I have been fighting with SSDI for 5 years trying to get my disability. I understand from the docs that only 2 other women made it past the age of 50 undiagnosed and they both died within a year of treatment. How encouraging is that!! I figure I am too stubborn to die just yet. Although, I can honestly say I have had some truly horrific days during all this. I don't know how some of you cope mentally with all this but I could use some new ideas. I am running out of ways to keep myself positive. I know all of the medical end all too well, but the mental end I wasn't ready for. I was never one to get down or depressed and because I have hormonal hypertension due to this I can't take any drugs for the depression I get. They all cause hormonal spikes which send my pressure sky high. I have had 2 heart attacks and 3 strokes already and would like to find some way to try and remain a little more calm during all the steroid ups and downs.

Any suggestions? Susan

Hi Susan,

I use relaxation techniques - progressive relaxation, deep breathing, mindful thinking, visualization, etc. I would like to tell you that I always remember to use them when I am upset but that would be a lie. But truthfully, when I do remember to use them I am much better. I read something somewhere that said that the deep breathing cleansed the body of excess adrenalin. Makes sense to me.

As for what your doc told you about Sheehan's, I'm suspicious about that fact about not many people making it past 50 if they aren't diagnosed, because I was 56 when I got diagnosed. My story is that I was most likely born with a pituitary cyst. Over the years it caused spinal fluid to leak into the pit bony area (sella turcica) and caused empty sella. But I had few symptoms, though I guess I could admit my metabolism was always a little sluggish I felt pretty good. The only reason I know I had it at a young age is that I had a concussion when I was in my 20's and it showed on the CAT scan - doc told me it was nothing, just like being born with a big nose.

Everything went south during my third pregnancy, and the delivery. During pregnancy I got strange heart arrythmias and I just did not feel well at all. They wanted to put me on heart meds but I declined out of fear for the baby. He ended up to be 10 lbs. 3 oz, and the delivery was horrendous. Right after the delivery I crashed - my bp went to nothing. I woke up to cuffs on each limb, docs working to push blood back to my heart/brain. So I believe this crisis gave me Sheehan's on top of my pit problem that I already had...but hard to say because the crisis itself was probably due to the pit cyst.

Regardless, he turns 25 soon and it took me until two years ago to get diagnosed. It was so hard to not have people believe you, doctors made fun of me, called me a hypochondriac, one told me if he treated everyone who was fat and tired he'd be a rich man...and then there were the misdiagnoses, just about one for each different symptom. So I know what you have gone through and feel for you.

Take it one day at a time. In the beginning, it's an adjustment. But I firmly believe that we can be healthy and live a normal life. Or as normal as possible. Positive thinking goes a long way. But again to be truthful, I have my days. Gratefully I have more good days than bad.

Deb

P.S.

Keeping my blood sugar as stable as possible - small, frequent meals with protein - also helps my mood as well as energy level.

Deb

I wish my doc had been wrong about the survival on Sheehan's but I know he is correct. This info came from him and 6 other endocrine including Mayo Clinic. It is common in third world countries but not in the US. I found 1 women in the United Kingdom in the same boat and she is one of only a few over there. Sheehan's is different in that in people like me who had total involvement of the pituitary right off, usually have a heart attack and die in there 40's if not diagnosed early enough. I always thought the adrenal crisis would kill you, but apparently, it is the internal aging that occurs when you (as an adult) don't make any growth hormone for years. It causes thickening of the intimal lining of the arteries body wide. Mine are rated at an 80 year olds, but my cardiac cath shows no plaque anywhere. that is because it literally thickens the lining, it doesn't deposit plaques.

My grandmother was a research pathologist so I learned a lot about how to research my problems from her. I just wish I had had her tenacity when it came to dealing with the crap docs give you when they can't figure out what is wrong with you. I do deep breathing and I learned biofeedback years ago, but sometimes it is so hard to put it into play. It seems like I have such a short fuse now that I am on steroids. I have only been on them 1.5 years, so it is fairly new still. I didn't have this emotional reaction to growth hormone, or thyroid hormones. I can't take estrogen because it also causes hormonal spikes in my blood pressure. I am talking about spikes of 220/170 that drop within 10 minutes of the spike. Unfortunately, 9 months after the haemorrhage, I had a cerebral haemorrhage from one of the spikes. I had left hemiparesis for a long time. I eventually was able to get everything back with lots of PT. I had problems with my blood sugar until I started on cortef. Once my dose was balanced, my blood sugars dropped to normal and my weight started dropping like crazy. That is the one plus in all this. I can finally lose weight. I guess I need to work on my breathing better. My neurologist wanted me to work on that as well. I feel like a grade schooler, learning all over again. I guess there is always going to be something new to learn.

Post edited by: suelynnes, at: 10/29/2010 03:00 PM

Susan,

I'm so sorry about all you've been through. What a horrible thing to have to wait years for the proper diagnosis. Time could hve improved your quality of life so much. Thank God that you didn't die. I will pray for you so that you continue to feel better & defy the odds.

As far as relaxation - yoga worked really well for me. I also love taking bubble baths with candles & some soft music like "Enya". A pharmacological solution (you'll have to see if it interferes with your blood pressure) that my dr. has me on is lorazepam (anxiety medicine) to take as needed. I've had more stress this year than all my years combined. It seems to be taking the edge off. It helps because now I don't need to "stress dose" with prednisone which inevitably leads to more weight gain. Now, I can just use the lorazepam occassionally. And it helps me sleep.

I'd also try spending some fun time with family or friends to get you laughing. Laughter can really make things better - best medicine around. Go bowling, go see a funny movie, go get a triple decker ice cream cone. Go play paintball or have a "fake" boxing match with a friend to get your adrenaline pumped.

Good luck. Last, but not least, Pray to God & read his word in the bible. It has a very calming effect and makes you realize that your life will improve. Life is a cycle - there have to be valleys in order to appreciate the mountain peaks!

Good luck & keep us posted.

Love,

Angie

I just want to remind everyone that each case is different. Panhypopituitarism is extremely rare, and statistics would vary depending on the country one lives in, and the treatment quality that is available, how early they are diagnosed, etc. I also know that there are Sheehan's patients here on our forum who are coping and living as close to normal a life as possible. I know there are also many of us who struggle day to day, but focusing on the positive and on improvements, no matter how small, is essential to healing. We are all here to listen, to help, and support one another in that endeavor.

Deb

I second what Deb has said. I am the exception to the rule as far as statistics go. This does not normally happen in the US any more due to improved OB care. Back when I miscarried they did not yet know that this could occur with a late second trimester miscarriage and I had a bad thyroid which triggered the miscarriage and bleed. The test for my thryoid anti-body wasn't discovered until the 1990's so don't read into the stats for yourself. Panhypopituitary means all the pituitary hormones were effected and that is very rare. What I need now more than anything it to learn ways to cope with the ups and downs of emotions you get being on so many different hormones, especially the cortef.

I love the yoga idea. My faith is incredibly strong already which I know attributed to my survival. You have to believe in something and even the docs are attributing the survival to strong faith and instincts. I have really bad legs, but I heard of a book called chair yoga. I think I might try that. Any yoga should be better than no yoga. Susan

Post edited by: suelynnes, at: 10/31/2010 01:41 PM

Yes, it's the breathing that matters. Good luck and let me know how it works for you.

Deb

Well, thought I would check in. I am losing ground. I had a major setback in Oct. and it has been downhill from there. The only shining light is, I found a new endocrine who really knows how to treat panhypopituitary. How refreshing. My nurse alarms did not go off once while seeing her. I think she may just save my life. I have not been able to do anything, not even yoga. Now I have to start over because I am so deconditioned I can barely walk. Hopefully, this too shall pass.

I was also struggling to get apropriate treatment and support in the Uk because my symptoms were not textbook perfect. I know how scary it can be and how you feel like just ending everything. If I may encourage you, I have now been diagnosed and treated and 3 years later, I lead a full life. Yes, I still tire easily and yes, I am still on the road to recovery but...I am getting my life back! I shudder when I think of what could have happened if I DID give up! Please trust in God because He has the right doctors for you and DON'T GIVE UP! This too, shall pass!