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Michelle's Story

I am 37, live in Sydney, Australia with my 3 year old son and his father. I was diagnosed with Cushing's in October 2002 having suffered symptoms for approx 2.5 years.

I think my GP thought I was some sort of neurotic who couldn't manage her weight. At my worst I was 35 kilos over weight. I had no period, stretch marks, shocking mood swings, high blood pressure, sleeping issues, poor vision, muscle weakness, stress etc etc.

Having always been fit, slim and healthy my family had no idea what was going on. After seeing the same GP for 18 months, with increasing symptoms, the best he could do was recommend that I see a dietician. I was really beginning to believe that he was right and I was just going nuts.

One day I had lunch with some girl friends and explained the problems I was having. That night Robyn called me up and provided me the names of some endo's. She had been discussing me with her husband who is an intern at one of the hospitals here and he said that I clearly had something wrong and should be insisting on seeing a specialist.

I made the appointment with the endo, went to my GP and insisted he give me a referral. His response was "he'll just send you off for lots of expensive tests", my response - "great".

My endo picked up the problem within about 10 minutes. He sent me off for testing and within a couple of weeks had a firm diagnosis of Ectopic Cushing's. Since October the testing has been extensive and expensive. Unfortunately despite all efforts we have not been able to find the tumour which is causing the problem.

The positive thing about that is it can't be too big and nasty. The negative thing is that I still have Cushing's until we find it. We are now laying off testing for a while until it grows large enough to be able to find.

In the interim I have been put on Ketoconazole. This was started at the end of Dec 2002 (5 months ago). It was allot of trial and error in quantity. My body reacted very strongly to it and my Cortisol levels dropped to dangerously low levels (30). I effectively had Addison's. I finally got the medication balanced in about Feb. I felt fantastic for about 5 weeks. I was planning a weight loss and training program to get me to the Sydney to Surf fun run in August. Then all hell broke loose. My Cortisol levels jumped back up again and I felt like hell.

Turns out I was pregnant. The last thing anyone expected. Having been very upset just months before about possibly never being able to get pregnant again I was now very upset about being pregnant, still 30 kilos over weight and on untested medication.

However everything seems to be going fine. My medication is now balanced. I've been on both sides of the Cortisol pendulum so many times that I can now tell on a daily basis if I am high or low.

I have sacked 2 GP's. I now have a wonderful team of doctors looking after me. My Endo is not only very good, he is very supportive (I rang his mobile in tears when I found out I was pregnant) and has been ensuring he stays in contact with my Obstetrician and GP.

I am now 20 weeks pregnant. All tests indicate that the baby is fine. It's a boy - Brandon.