And It's About Time There Was Some Support For Cushing's!
Before I tell you my story, these are my symptoms:
I noticed the symptoms about two years ago. I had always been fit, and between 62 and 64 kilos. I first started having problems with staying awake at work and getting very tired. I would come home after work and collapse on the bed and sleep till 22:00. I started bruising easily, but didn't take notice of it as a medical problem, just wondering how I was bumping into things so hard, or why horseplay was getting rough enough to cause bruises. The fat started to pile, no matter what I did I couldn't take it off. I used to do a hour of aerobic fitness at the gym four times a week, am vegetarian for fifteen years, don't smoke and drink very little, avoid fats. So there was no reason to put on so much weight.
A doctor friend suggested that I have a look at the sella tursica. I had never heard of it before. Then he talked about the pituitary. It was one of those ridiculous words like xylophone and bolweevil that I had come across but never really knew. In May 2002, I went to an endocrinologist and he told me I don't look like someone with an endo disease, because they LOOK different. He asked me to get an HIV test and wanted to see if I had lung cancer. I was so upset that I left the office and didn't do any of his tests. I flew to Moscow the next week to see an endocrinologist of the Ministry of Health where I have some contacts. She took a look at me and said she could see I was sick. Blood results showed that testosterone was very low, but estrogen, insulin and blood sugar were very high. She gave me a hormone to inject. I had no idea what was going on, I just trusted this respected specialist and I had an injection once a week for 6 weeks. I felt great, went back to work with no problems but didn't lose any weight. I got fatter in fact but had lots of energy. A Russian doctor practicing in the US looked at the hormone I was injecting and told me it should only be given to pregnant women. Devastated, I stopped after the fourth injection. I went to another hospital to see the head endocrinologist in Amsterdam. He concluded that I should walk in the fresh morning air to lose weight, and that it was all in my mind. No endocrinological disease. This was in July 2002.
Frustrated, I turned to the Internet. I found the UK pituitary organisation and they gave me the name of a top pituitary specialist in the Netherlands. I went to see him, but was assigned to one of his interns instead. This man is extremely rude, has no bedside manner, and I just didn't like him from the moment I met him. But he told me that he suspects a pituitary tumour and would do his best to find out what is wrong with me. I was in his charge for more than four months. Did urine collection but he didn't tell me to keep it cold so it was in my house at about 80 degrees for four or five days, and I think that compromised the results.
On one occasion I got another doctor because this endo's wife was delivering a baby. This man was a lot more attentive and he put me in hospital for two days to see why I was drinking so much and why my urine was so watery. It took two months to get the results back and my "endo specialist" told me that everything came back normal. I asked for number but he wouldn't give them to me. He said he was the medical specialist not me, and I have no endocrinological disease. His advice was to go home and wait for the sun to shine in spring, and take calcium and vitamin D because they are alarmingly low in my body.
Because this endo refused to do an MRI of the pituitary, I went to a neurologist at another hospital. He didn't know much about Cushing's and he wouldn't do it with contrast. Nothing showed up, but big deal, not many do show up on an MRI without contrast. I asked him to redo the MRI with contrast and he refused. He told me my brain is normal, so I must be making it all up. Now I'm back to square one. I have been on medical leave for four months. In the Netherlands we can be on leave for up to two years at full pay, during recovery and treatment. Now the system has told me I'm not sick so I must stop looking for the root of my problem because I can become very depressed if I look and don't find anything. I should learn to live with it and find a job that I can do.
Just been fired from my job because they didn't want to wait for me to get better. I've made an appointment with the specialist at the Cushing's centre in Munich, Germany to have an MRI of the pituitary and abdomen, bone density scans, dex tests, blood work and a psychological evaluation all in one go. This is what I've been waiting for, hope it pans out in my favour now.
