Lorna shares her journey with Sheehan’s Syndrome
I am 56 years old (57 this year) and I have lived with Sheehan's for coming on 24 years this September.
When my waters broke in September 2002 my labour progressed very fast indeed. By the time I was 8 cm dilated it was realised that our daughter, Emma, was breached. I was raced into theatre. Unfortunately, because of a scoliosis of the spine, I could not have an epidural and had to have a general anaesthetic. By this time, I was 10 cm dilated and so they had to start the procedure before I was fully under (I remember someone apologising as the knife went in, then nothing). Emma was born at 12 noon, by 9 pm that night I was vomiting, losing blood etc. I had post natal eclampsia! They could not get me to intensive care in time, so I was raced into a birthing room and the machines brought to me. As you know, the cure for pre-eclampsia is to give birth, but I had already done that so received lots of bloods and very nasty drugs and a lot of luck. My husband was called in as my next of kin and the first 24 hours were touch and go. My blood pressure flew up and then plummeted for about 4-5 days (it is a bit of a haze). Finally, I got home with my baby, but still losing lots of blood and extremely ill. Whilst in "Intensive Care" a nurse said to me that she could not tell me this, but if I instructed her, she would have to bottle feed my baby at night whilst I slept. Bliss! This probably saved our baby. On the main ward, where I was for 48 hours, they latched Emma on to me. I was out of it and just sat there, drugged, with this baby hanging of my breast. When we got out of hospital Emma slept solidly for hours. My eagle-eyed Mum immediately spotted that she was lacking in nutrient and made a bottle. In retrospect, I did not lactate.
I was reasonably fine for 2 years. I lost blood for months after but built myself back up. Then we decided to try for a second baby and I came off the pill. Immediately I had no periods and, when scanned, my ovaries were shrivelled. They tried me on drugs to stimulate the ovaries, but nothing. They also discovered very low oestrogen and progesterone so put me back on the pill as I was by now suffering from premature ageing. Over the next year my health plummeted - cold sores, hair falling out, no body hair at all, cracked hands, Raynaud's Syndrome, extreme cold (2 duvets, hot water bottles, PJ's, heating on in August, to the point I was burning myself in the shower), no appetite. The worse was the exhaustion. I couldn't climb the stairs. Our daughter's nursery was a 10-minute drive away and I had to stop there and back for a sleep. I was a danger to myself, our daughter and the public. Also, my normally fiery, Glaswegian character had gone. I was desperate to please people. Not me at all. My GP was great, she used to say that I was one of the very few ill patients she had, she just didn't know why.
Finally, whilst on holiday with my parents and Emma, I blacked out and hit the floor with such force that I bust my nose and gave myself 2 black eyes - blood everywhere. It turned out that if I stood still for more that 4 minutes my blood pressure plummeted and I blacked out. Some how my father got me back to Britain whilst Mum and 3-year-old Emma stayed in Switzerland. My GP was waiting for me. She had cleared her diary for the rest of the day and said to me that I was not leaving until we had a plan. We went back to square one; the day Emma was born. Slowly a picture emerged and my GP diagnosed Sheehan's. I was sent to my local Endocrine Department. They normally deal with diabetes, but they pulled all the stops out. I had to be heated with hot water bottles to get my veins working for bloods and scans. I was put on steroids immediately and a bed was on stand-by. The Raynaud's disappeared, the sodium levels slowly came up and very slowly I started to respond. There is a paper written for the Lancet on Raynaud's Syndrome caused by Sheehan's based on my experience.
About 2 years after I was diagnosed and stabilised in at my local hospital, I was referred to a tertiary specialist centre. Whilst I was stable, my quality of life was not brilliant. Weight gain, sluggish brain, sex was agony, etc. The Head Endocrinologist there adjusted my Hydrocortisone dose and split it up to resemble my natural rhythm as much as possible. He also put me on DHEA (testosterone) and put me through the Insulin Tolerance Test. I produced no natural cortisol at all. He also put me on a Growth Hormone Trial with the promise of putting me on it properly after the trial finished. He also warned me about the inevitable weight gain. He also said that he could, if we wanted, help me to get pregnant but warned me that I was extremely high risk for more eclampsia and he could not guarantee me surviving the birth. We decided to just enjoy our wee girl and not to tempt fate.
I have just finished another five year Growth Hormone medical trial looking at the efficacy of long term use of Growth Hormone. I have been on it for about 18 years. I am strict with my diet, ride my horse, muck out stables daily, walk my very active dogs every day, go to the gym twice a week doing weights etc and do yoga. About 2 years ago, when I was 54, my medically induced periods started changing for no apparent reason, so they now have me on oestrogen gel and progesterone pills. At the same time, I suddenly gained weight and my cholesterol, which as always been good, exploded. I think that my body was trying to have its own wee menopause 🤣. That was when I started at the gym and they also made me diarise my food, which led to me losing weight. I was also put on statins.
What I have found very interesting about this condition is how each hormone, or lack of it, affects us mentally. For example, lack of growth hormone creates a feeling of detachment and loneliness leading to depression, even if you are surrounded by people you love.
Now I am stable. I take 12.5 mg Hydrocortisone per day in 3 lots, oestrogen gel, thyroxin, DHEA (testosterone), Vit D, Progesterone pill, statin pill and Growth Hormone Injection every day. My bone density is excellent; I am a size 8 in clothes (I am under 5”) and well within a healthy BMI. My cholesterol level is very good. I gave up my career when I was struggling but now do a part time job which I love. I have down days, lacking in energy, but the good days more than outweigh the bad. Sheehan's is a part of me, I live with it, but it is not me. My friends and family all know about it so when I am shaky, they step in and when I am good we can party. I would class myself as a very healthy and happy 56-year-old.