And It's About Time There Was Some Support For Cushing's!
I don't know when I started to get sick. I think the first indication I had that something was wrong was when in 2002 but I think it started a long time ago. I always had weird infections and outbreaks of impetigo and rashes. I always had problems with sleeping; too much or too little. Never just right!
In the summer of 2002 at University, I suffered from a strange virus and then lost all my hair. I got terrible headaches and felt stressed and anxious all the time. My weight was also spiralling out of control. I started a diet and lost about 20 kilos.
When I started in a new job in Glasgow, I had a sore head all the time and I slept about four hours a night. Having been terribly depressed and sleepy at university the first time, I equated not sleeping with being functional and did not think anything was wrong. I felt exhausted but at the same time wired. I had also managed to shift the weight but people I knew well said it was almost as if I was a different shape as well as being thinner.
I was constantly hysterical and felt like my body, my existence was on fast forward. It took every once of self control to keep the weight off and I was eating less than 1000 calories a day. I was highly strung, obsessional and hyperactive. "Intuition is an interesting quality of early life adrenal fatigue. People that develop adrenal fatigue early in life are often described as empaths and will tell their friends (but not their doctor) about their ability to pick up feelings. They often suffer because of their high sensitivity and are always looking for new ways to ‘ground’ themselves." - I felt as if I could read people's minds and could see their emotions so vividly is was like a colour.
At Christmas, I had a headache so bad I lost consciousness. I went to Ireland for a job and then had to have a medical. I had one of those terrible headaches from which I lost consciousness, I had such a sore head and face in the aftermath it was quite unbelievable. I was diagnosed with trigeminal neuralgia and given anti-epiletic medicine to control it. They made me like Charlie babbit so I ditched them pretty quick.
I got a new job in Italy and moved out there and this is where the brown stuff really hit the fan. My skin got really bad - thin and acne ridden. My hair was coarse and starting to thin. I now slept even less and I was spiralling out of control. I had panic attacks and would sweat all the time. I started to get a downy hair all over my body and I bruised on touch. I was petrified. I became incredibly aggressive and angry.
To cut a long story short; I went pyscho. At the time, my periods had completely stopped, I was losing my hair, I was not sleeping more than two hours. I felt suicidal. I had a sore head. My skin was covered in boils and scabs. My acne was horrific and had a body beard. This was the autumn of 2004.
I was now tearing through life. I was insane. I was having panic attacks all the time. I was obsessive compulsive and out of control. I had started to gain weight no matter what i did or did not eat and it was all going to my stomach and face. I had also developed a hump. I kept falling over and losing my balance.
I did not recognise the face staring back at me in the mirror. I started to have hot flashes and it felt as if there were insects crawling under my skin. This was the menopause. I now slept about 2 hours a night and was losing my mind.
Christmas of 2004 came home and went to the doctor’s with a list of symptoms who assured me it was all due to the move to Italy. I said it might be an idea to do a blood test anyway as the hair alone was definitely a hormonal issue. So we did some tests and they showed I had high prolactin. I started to read about tumours related to the pituitary gland and when I found a website about Cushings on this website I knew straight away that this is what was wrong with me. It was such a relief. I fought with the doctor for a while and then he referred me to an endo. However, there was a 24 week wait. I wrote some nasty letters and that got changed to 2 weeks!
I was getting sicker and came home and they screened my adrenal glands. There was nothing there. I had further testing and an MRI in May showed a pituitary tumour. It was about 9mm and was secreting ACTH and prolactin. I was referred for surgery. My health got steadily worse. I developed early stages of osteoporosis and was unable to walk very well. I was sweating all the time (the wild onion smell), gaining weight no matter what I ate and getter sicker and sicker. I was now about 200 or so pounds and a total bear/buffalo ? I was retaining so much water in my legs before the operation that I could not walk.
I waited so long for surgery. I was kept on a hidden waiting list. My consultation, after diagnosis in May, was for October. I could not take one more minute of it. I found a surgeon privately, THE WONDERFUL Mr POWELL, who saw me on the Friday and operated on Monday. He also mentioned that had I been referred to him, I could have been seen in a month. Angry does not cover it!
Had my surgey mid-July and it went well. Very uncomplicated by all accounts. One tip – when they are hesitant about taking the nose tampons out, WAIT. It is not a pleasant experience. Apart from that all good. Tumour was making prolactin and ACTH. I was in the hospital for a week and went home as fast as I could. I felt really rather out of it for a while and then I started to feel better. I was sleeping a bit too much and was very, very achy.
I had started my Cushing’s journey at 130 pounds and went up to 200. I am now 180 a year on and still plugging away at it (with a little help from Metformin – my new best friend).
I got good news in April that I am ALL CURED and that my HPA is all normal. I have no hormones out of whack and any residual lunacy must have been there to start with!