Christine's story - Acromegaly
March 2003. I had just given birth to my second child age 32. I had been ill throughout the pregnancy, crippled by headaches, raging high blood pressure, plus I gained a whopping 4 stone.
At my six-week check-up I complained of still feeling ill. I was told it was ‘normal’ to still feel unwell at this stage. By then I was 5 stone heavier than before I got pregnant, I had constant pain in my knees, I couldn’t get my shoes on and had to buy a bigger size. I started trying to diet but weight loss seemed very slow.
I went to my GP for help, was diagnosed with diabetes type 2, and told I need to stick to a strict diet. I tried everything from starving, to shakes only diets. Nothing worked. Three years after my son’s birth I weighed nearly 30 stone - prior to the pregnancy I was 16 stone. I was regularly abused in the street due to my size. I was incredibly ill, fatigue and headaches were the norm. I had lost count of the amount of trips to the GP I had made; I was constantly told I had sinus problems, prescribed nasal sprays and told to diet. I had given up hope of help.
In 2006 I went to the optician, in the hope new glasses would help with the headaches. The optician found a problem with my left eye and referred me to hospital. When I went for my appointment I virtually shut the ward down as my blood pressure was so high I needed urgent medication. The consultant examined my eye under a microscope. He then simply told me that I had ‘too much fat’ around the eye socket to be examined thoroughly. I was told to diet and sent home. I was devastated.
My health continued to deteriorate, I was working full time with 2 children, in permanent pain in the left side of my face. I spent most of my ‘family time’ asleep on the sofa. In 2008, after 18 years together, my husband left. He had simply had enough and found someone he could have a life with. Now I was alone with 2 children, I knew I couldn’t carry on as I was. I went back to my GP - by now I was on 12 painkillers a day.
Once again I was referred to the Ear, Nose & Throat department for a nasal examination. This time instead of pushing a camera up my nose the doctor ordered a CT scan.
The day I went for the scan I knew they would find something; sure enough 3 days later I got an appointment to attend an MRI scan, including a test called ‘pituitary contrast’. I looked it up on the internet. The most common reason for this type of scan was to look for a pituitary tumour. I did more research, and I knew - I had every single symptom. Moreover, I had every symptom of one of the most serious side effects of pituitary tumours, acromegaly - too much growth hormone in an adult.
I went for the MRI scan, I also had blood tests and an x-ray of my feet. I was transferred to the endocrinology unit, where after five years of pain, I was told I did have a pituitary tumour and acromegaly. I was 37, alone, with children aged 5 and 10. Yet worse was to come - I was too ill to be operated on. I needed to lose weight, reduce my blood pressure and my growth hormone levels needed to be reduced before I could be given an anaesthetic. The treatment to reduce growth hormone levels is expensive and so had to be approved by the Primary Care Trust. It was 4 months before I got the first injection.
The pain in my left eye and left side of my face grew worse. I often spent days laid in bed struggling to move my head. It was like a bonfire behind the eye that burned night and day. I couldn’t sleep and I looked like a zombie. At time I just didn’t want to carry on, I did it for my children.
It was 2012 before I was fit enough to operate on. I had trans nodal brain surgery to remove the tumour. The day after the surgery, although I was unwell, I could tell the pain had gone.
In the weeks that followed I got better, lost more weight and felt better than I had in many years. Even my shoe size shrank!
I thought I had left it all behind and that the torture was finally over. Two years later in 2014, I started to feel tired again. Still under the endocrinology department tests revealed I had stopped producing growth hormone altogether, I was going to need to inject myself every day.
I learned to inject quickly, the only bind was having to keep the treatment in the fridge, this makes it difficult to go on holiday, but I got used to it.
Then in April 2016 I became very ill. I developed vertigo, was permanently exhausted and felt faint much of the time. I thought the tumour was coming back. Being so ill again was very hard to deal with and I fell into despair. I had many more tests and by September 2016 I had a diagnosis; Secondary Adrenal Insufficiency. I needed steroids 3 times a day to increase the level of Cortisol production. In addition, I had under-active Thyroid and was prescribed Thyroxine.
I was advised that I needed to carry a steroid card with me at all times. If I became ill with vomiting or had any type of shock/accident, I would need an emergency injection of Hydrocortisone within one hour. It did seem like a lot to live with.
By January 2017 I had started to feel a bit better but I needed more surgery. Acromegaly had relaxed my abdominal wall so much a double hernia had burst through which needed urgent repair. I asked for the loose skin to be removed from my stomach at the same time, it would have made the operation easier and increased the chances of success. The NHS refused to pay for this and I was offered a standard hernia repair which I accepted.
The Endoconology Department advised me I would need to be placed on a Hydrocortisone drip for at least 24 hours after the operation. I gave the Consultant Surgeon all my details so they were fully aware of my medical needs.
On the day of my surgery the Anaesthetist told me I would be given Hydrocortisone throughout my surgery, he even came back during the night to make sure I was ok.
The morning after my surgery, although I was in a lot of pain, I started to feel odd. It was like I was very still while everything around me was in fast forward. I started to ask for help and I realised my speech was a stutter and very slurred. Then I realised something; I wasn’t on a hydrocortisone drip, plus I had only been given my normal dose of steroid. I needed hydrocortisone, and I needed it straight away.
I asked the nurses for my steroids; they refused, stating that I could not have more that the prescribed dose of medication. They did not understand what adrenal insufficiency was or that it can be fatal. I asked for a Doctor and was told they were ‘all in a meeting’.
I was shaking and feeling very far away but I knew I had to get help. I rang my partner from my mobile phone, I was slurring so much he couldn’t understand me but he knew something was very wrong and contacted the ward. After 45 minutes a Doctor finally administered an emergency injection of hydrocortisone. I was just so terrified.
Later the same day I was moved from the High Dependency Unit on to a normal Ward. To my absolute horror, the same thing happened the next day. In fact, my partner had to bring in my steroid tablets so that I could hide them in my bag. The rest of my stay I then gave myself a double dose, as per the guidance for adrenal insufficiency sufferers.
There was no care plan in place for me and this was possibly the worse experience of my life. I never want it to happen to anyone else.
I have recovered from my surgery but the horror of what happened has stayed with me. I’d avoid further surgery at all costs. Hospitals should have a protocol for dealing with patients who suffer from this condition and staff should be given care plans to reflect the needs.
I do feel when I look back that I have lost a lot of my life to the pituitary tumour, plus I have come to accept it is something you can never really get over. It’s like an invisible illness, the suffering is real but no-one can see it. I begged for help with my weight, no –one ever considered I had Acromegaly, I was just called a secret eater.
The Eye Consultant who told me I had ‘too much fat’ around my eye socket cost me a further 2 years of my life before I was diagnosed.
I still work full-time, balancing my conditions to try and live a normal life. I still feel tired much of the time but I have learned to adjust and increase the steroids when I need to.
I want to do more to raise awareness about pituitary tumours and the conditions they cause. So little still seems to be known about it. My advice to anyone would be, don’t accept the first diagnosis you receive, keep pushing when your gut instinct tells you something isn’t right.
The Pituitary Foundation has recently run a campaign to encourage all hospitals to have a protocol in place for managing patients with adrenal insufficiency. Read more here.