A Sheehan’s mother’s story: how rare is my condition?

How do you feel postpartum? Claire wishes she had asked herself this sooner. She went on feeling unwell and undiagnosed for too long. It took almost two years for her to be diagnosed with Sheehan’s Syndrome: a rare condition which needs more attention, Claire believes.

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When I finally checked in with myself it was in May 2020, two months before my incredible daughter turned one. I realised my hair was coming out in clumps. And when I stopped and took a breath, I noticed that my NCT gang were full of energy that I didn’t have – they were planning group runs up hills with newly bought running prams, whilst I was having trouble walking up the hill – I was shattered. I also found that my period had not returned and began to feel concerned. I was expecting a delay to it returning as I had lost a lot of blood during an emergency C-section – over half the blood in my body – and my milk didn’t arrive, so I couldn’t breastfeed. So, when my period had not returned, I put it down to that – as this is what the experts kept telling me it was. I had various tests at my request following my labour and everything had come back fine.

So what was up?
I noticed that I had started to feel quite unwell about 9 months after giving birth. I had lost my va va voom, my skin was dry, nails breaking, l was gaining weight and generally I felt urgh. I went back for more tests. It showed an underactive thyroid. Following the thyroxine medication, I immediately felt much better. My period came back in August – hurrah! I had never been so happy to see it. Later in the year I had a creeping feeling that things were still not quite right. My period had vanished again, I was lacking in energy. I was gaining weight and really struggling to lose it. I was irritable and felt low. I had my thyroid tested again in October and it was ‘within normal range’. At the beginning of this year I spoke to the GP again. They said they wouldn’t test my thyroid again until March/April. They were unconcerned about my lack of period.

“It’s frustrating and upsetting as it could have been prevented”

Every symptom listed
I googled my symptoms and found a match. Sheehan’s Syndrome. I couldn’t believe it. I literally had every symptom listed, even the wrinkles on my face that I noticed have been coming on more and more over the past year. FFS! And, my 41st birthday was looming. Aarrgh! Dr Google said that Sheehan’s Syndrome is a damaged pituitary gland caused by severe blood loss during labour. It says it is rare in the UK. Some further research led me to a private endocrinologist, and I was in a lucky position to book an appointment for the following day.

Finally a diagnosis
Dr Kelly said he thought it was highly likely I had Sheehan’s. Just as I read, he also mentioned it is rare in this country. How rare I wondered? He said they needed to rule out a pituitary gland tumour and for this I had to have an MRI scan. I would also need blood tests to check my hormone levels. He said if it is Sheehan’s the treatment should be straightforward and we would just need to replace the hormones that are missing. One MRI scan, some blood tests and lots of sleepless nights later, I have a diagnosis of Sheehan’s Syndrome. It’s a relief in some ways and in other ways it’s frustrating and upsetting as it could have been prevented. I had actually asked for a C-section, the planned non-emergency kind, but I was made to feel stupid for asking.

“It’s utterly heartbreaking when you don’t have milk to breastfeed”

Red flag
I didn’t produce any milk to breastfeed. I now know that this is one of the red flags for Sheehan’s Syndrome. I saw countless doctors, midwives, consultants and GP’s and not one of them mentioned that Sheehan’s Syndrome could be a possibility. It’s utterly heartbreaking when you don’t have milk to breastfeed. I saw two lactation consultants, spoke to any midwife who would listen – some were more interested than others – and questioned the consultants. I heard over and over that I had lost a lot of blood and that my milk would be delayed. In fact my pituitary gland had been damaged by the blood loss. The hormone Prolactin had taken a battering and was no longer functioning properly. The milk didn’t arrive. At the time I wept daily. I grieved the loss of the chance to experience this with my daughter. I cried so much I was flagged for postnatal depression. I explained I was just sad I couldn’t feed my baby and people seemed to understand and accept this.

A different experience
My daughter is two this month. She loves milk. When she is poorly or teething she asks for it over and over. One of her favourite things is milk, from a bottle with me. We cuddle quietly together. We built something else instead and she doesn’t know any other way. To her, this is perfect. I can really empathise with the pain of not being able to feed your baby if that is what you desperately want. I can also say that from experience it’s OK not to breastfeed. Perhaps a different experience than the one you had imagined, but it still has the potential to be equally as special for you both.

“No one knows how many women in the UK have Sheehan’s”

Raising awareness
Sheehan’s Syndrome is so unknown that the women who are suffering from it are not even a statistic. No one knows how many women in the UK have it. No one knows how many women have a diagnosis and no one knows how many are living with it undiagnosed or misdiagnosed. One of the things that has been unexpected is that I have met this global community of incredible women with Sheehan’s. I feel very grateful to have them in my life and we support one another. Alongside some of these amazing women we are going to try and raise awareness of this little-known condition. We want to ensure that no woman leaves hospital in the UK with a babe in arms having no idea that she has Sheehan’s. Sadly, we know that what awaits her is a cascade of unpleasant and in some cases, life threatening, symptoms. We want to ensure that women are correctly diagnosed in hospital and that they are seen by an endocrinologist and given the proper care they need.

Sheehan’s Syndrome is caused by severe blood loss or extremely low blood pressure during or after childbirth. This leads to lack of blood flow to the front part of the pituitary gland, which enlarges during pregnancy. This damages the hormone-producing tissue so that the gland cannot function properly.

There appear to be two forms of the disorder; a chronic form and an acute form, depending on the amount of damage to the gland’s cells. The acute form reflects considerable damage so that symptoms become apparent soon after delivery. In chronic cases, the volume of damage is much less and symptoms may not appear for months or years after delivery. You can read more abour Sheehan’s Syndrome here.