Living with Panhypopituitarism

 

I have been living with Panhypopituitarism for 5 years.  For the first year I was not aware this is what was wrong with me.

In 2012 I took ill and felt generally unwell for a few months.  I made an appointment to see my Doctor and while I was there he diagnosed me with unstable Angina and was taken into St Mary’s Hospital on the Isle of Wight straight away.  After a few days I was transferred to Southampton General Hospital and was fitted with a stent in my heart.  After this the doctors, consultants and nurses all said I would feel like a new woman.

Sadly 3 months on I felt worse than ever.  I was struggling to do anything.  If I got dressed it was a good day!  I could either do some housework or cook dinner but not both in the same day.  I just thought I was in very slow recovery from my wee heart op.

I gave up a job that I loved because there was no way I was going to be able to continue to do it.  I also gave up on living to be honest.  I was putting on weight rapidly even though my eating had not changed.  I was getting more and more depressed and just thought my life was over.

Then one day after a routine blood test my doctor phoned and said that they had noticed something in my blood and could I please go and get another test done at 8am.   They had noticed that there was no Cortisol in my blood and 8am would be the optimal time for a Cortisol reading.  After the 2nd test and still no Cortisol in my blood I was immediately put on Hydrocortisine  to mimic what my body should have been producing.  Then came months of tests and visits to an Endocrinologist resulting in a diagnosis of Panhypopituitarism.

Even though I had my diagnosis I still wasn’t living really, I was just surviving.   I suffered from constant pain, I had difficulty sleeping, I had a constant brain fog that made the simplest of tasks very hard and  I also suffered with anxiety and panic attacks.  My life felt pretty bleak.

At this point I have to say that if you have a Pituitary condition it is very hard to get an Endocrinologist who knows how to treat it.  My first Endocrinologist dealt with the basics of my condition but was not concerned or did not understand the full extent of the condition.  I was very lucky that when I moved back to Scotland I was placed in the hands of an Endocrinologist who knew and understood the condition.   He said he wanted me to have my quality of life back and to start being the 50 year old women I am rather than the 65 year old women my body thought I was.

He found the missing piece of my jigsaw  – Growth Hormone.  After a few more tests I was given the go ahead to receive Growth Hormone, in the form of a nightly injection, and what a difference it has made.  In less than a year my life has changed so much and I feel that I can start living again.  I don’t think I will ever be the women I was but I do feel that I can be a woman that lives her life to the full.

I do need to take Hydrocortisone, Thyroxine and Growth Hormone for the rest of my life but it is worth it to have my life back and to be able to make plans and not have to worry too much about not being able to do it!  I still have some sleepless nights and anxiety attacks but my pain is much more manageable and the brain fog is slowly lifting.

The main concern for my condition and people living with Pituitary issues is the risk of Adrenal Crisis.  It is life threatening if not recognised and treated immediately.  I have an emergency injection kit which I take everywhere with me and I  manage my cortisol levels very carefully.  There are many different reasons why someone could go into adrenal crisis and not enough awareness of the risk so I feel I have to raise awareness of those around me about what to do if something happens to me.

Signs of an adrenal crisis include:

severe dehydration

pale, cold, clammy skin

sweating

rapid, shallow breathing

dizziness

severe vomiting and diarrhoea

severe muscle weakness

headache

severe drowsiness or loss of consciousness

An adrenal crisis is a medical emergency. If left untreated, it can be fatal. If you think you or someone you know  is having an adrenal crisis, dial 999 for an ambulance.

If an adrenal crisis isn’t treated, it can lead to a coma and death. There’s also a risk your brain won’t get enough oxygen if treatment is delayed, which can cause permanent disability.

From:  http://www.nhs.uk/Conditions/Addisons-disease/Pages/Symptoms.aspx

It is a very scary threat for people with Adrenal conditions and it would be great if there was more awareness of these conditions out there.  From my own personal experience I know that Ambulances and Hospital staff are still not aware of these signs and are not equipped to deal with these situations. So if friends and families of people with adrenal conditions can be more aware we can go some way to getting the word out there.