Our Story

[Sara70]

Hi. I was diagnosed with Hypopit in 2017. I had a subtotal hysterectomy in 2010 due to endometriosis and extensive scar tissue. I have Ovarian cysts on my one remaining ovary. I was diagnosed as Coeliac in 2005. Migraine sufferer since a child and now receiving Botox treatments every 3 months.

After a sustained few years of stress, I resided on my sofa for 1.5 years, between 2015-2016, unable to work, barely able to wake up or move for muscle pain and feeling freezing cold all the time. This placed massive financial strain on my family to make ends meet.

In a bid to get better ASAP, I got a huge amount of support and advice from previous posts and the community on HealthUnlocked. This was invaluable to me, since my GP was of no use and I was buying T3 without being properly diagnosed.

Eventually I made the decision to seek private medical advice. We paid for this on credit cards! After a year of getting private medical help, I reluctantly stopped all my meds over a 7 week period, so I could have a TRH test. The results came in the next day, diagnosing me with Hypopituitarism. This was in May 2017 and I was referred back to the NHS system the same day.

I now take hydrocortisone, levothyroxine and HGH daily, allowing me to be able to start work again. Part time at first, but now I’m back to full time employment. I’ve gained a lot of weight from the steroids, but at least I feel alive and a part of society again.

A month before I was diagnosed, my husband was diagnosed with a Pituitary tumour! I can’t tell you how we got through that particular time. Only that once the diagnosis has been made, I cannot fault the support we’ve had from the NHS.

The issue does not lie with the NHS as an institution, the issue was getting the correct diagnosis and being referred at GP level without having to justify my cause and fight to be heard.

Hypopit is such a rare disease, and not easy to diagnose, but it could have been resolved much sooner.

Despite all this, my husband and I count ourselves lucky, because we both understand and support each other through the rough days and the frequent flare ups. We both work full time. My husband is self employed and returned to work 2.5 weeks after having brain surgery. He is and always will be my hero!!

[shaws Administrator]

I am sorry both you and husband have suffered ill-health and have had a long journey with ups and downs but that you have both got through it somehow.

I wish you both good health and we are fortunate when each can support and rely on one another when we go through very difficult times.

The most important phrase you make, i.e. "The issue does not lie with the NHS as an institution, the issue was getting the correct diagnosis and being referred at GP level without having to justify my cause and fight to be heard" I totally agree with your last sentence. Sometimes we have to diagnose ourselves which can be very difficult and is long drawn out..

[Sara70 in reply to shaws]

Thank you so much shaws. You helped me enormously before my diagnosis.

I had issues trying to log on here for s long time. I’m glad I’m able to take part in the conversation again. It must have appeared that I’d taken the advice and disappeared when I’d got what I needed. Id like to think I can help others even in a small way. Xx

[shaws Administrator in reply to Sara70]

I'm glad you've been able to log on again but both you and husband have had enough to contend with and concentrating on his recovery was the first and foremost the most important thing as well as improving your own health.

As the saying goes 'there's nothing like personal experience' to give an insight into others' similar problems and try to ease unnecessary suffering.