There is no doubt hundreds of people are suffering and struggling through life with undiagnosed hypopituitarism

Hi my name is Emma and I'm a 40 year old mum of two. I had my first son back in 2006. The pregnancy was absolutely normal and I worked full-time on a busy hospital ward throughout. Unfortunately, the labour was a bit more difficult and I had quite a significant bleed afterwards, however I went on the next eight years trundling through life, a little more tired than your average mum of that age. In 2013, I became pregnant again with my second son. Unfortunately, this pregnancy wasn’t as plain sailing. I was extremely ill, nausea, passing out etc, having to take six months off work which was still on the hospital ward at that point. After the birth, which was another tricky labour, I sort of trundled, on but my husband and I were very aware that there was something wrong with me.

I was actually treated for postnatal depression, which obviously wasn't the right diagnosis but it wasn't until my son was four years old that I started to push my GP for something else other than antidepressants. I actually weaned off those quite easily and was referred to the chronic fatigue clinic. They required a set of bloods, and when my GP sent the results to them they bounced the referral back because my cortisol level was around 180, which isn't massively low, but anything below around 300 in the morning should be checked out.

I was then referred to the endocrinologist at the hospital had a short synacthen test to test my cortisol levels, which were low, so I was prescribed steroids and picked up a little. Before this, I was on my hands and knees crawling up the stairs and falling out of work after a six hour shift absolutely shattered.

It was at this point that I finally admitted defeat and was signed off sick from work. Little did I know that I wouldn't actually ever return to working on the ward at the NHS.

It was September 2018 when I got the adrenal insufficiency diagnosis and although I was somewhat better with the steroids I still knew there was something more wrong. They did an MRI of the pituitary and that came back with a small six millimetre adenoma giving me a diagnosis of hypopituitarism, because one or more of my pituitary hormones are deficient. I went on to push my consultant for the insulin tolerance test which is the gold standard test for secondary adrenal insufficiency and also growth hormone deficiency. He was extremely reluctant to do this and even threatened me with taking me off the steroids if I passed it.

However, as I expected I actually failed the test on both parts, proving I have both secondary adrenal insufficiency and growth hormone deficiency. I then received injections for the growth hormone deficiency which I give myself via subcutaneous injection every evening. These help significantly with my quality of life.

Around the same time I was pushing for them to acknowledge I likely had central hypothyroidism too, as my T4 thyroid levels were borderline and TSH was low normal, baring in my mind I was already deficient in other pituitary hormones it wouldn't have been a surprise that I was deficient in another.

I was going to be offered a trial by the consultant and the specialist nurse put a halt to this and managed to change his mind! So, I never got my trial of thyroid medication. That was back in March 2019. It wasn't until March this year (2023) that I finally got my diagnosis of Central Hypothyroidism.

Sadly, as it has taken so long to get a full diagnosis and on the replacement hormones, it’s meant that I’ve missed out on a lot of life. My youngest son is almost 9 and my oldest has just turned 17.

I finally got prescribed thyroxine, which is a relatively cheap medication, I take it once a day and within four and a half weeks I noticed such a difference. In particular, I had more energy and wasn't forced to have the afternoon nap that I had to have for at least five years previously.

As you can imagine this has been so frustrating and upsetting, the fact that I've tried to push for this diagnosis for years and I'd been dismissed for so long and I have missed out on so much of life.

However, I am now looking forward and I've managed to get myself a little part-time job, obviously I'll never be back to normal, and I have hypopituitarism - it's always a fine balancing act. But, I finally feel I've got a reasonable balance and I’m now replacing several pituitary hormones: cortisol, growth hormone, thyroxine, and I take the combined pill to help with sex hormones.

It has been quite a journey and rollercoaster ride and I believe a lot more needs to be done to help people who are having the debilitating symptoms that a damaged pituitary gland causes, and they need a timely diagnosis and thorough treatment. There is no doubt hundreds of people are suffering and struggling through life with undiagnosed hypopituitarism.