Cushing's Info

Hello everyone,

Just wanted to introduce myself and share my story, maybe this could have some therapeutic effect!

Two and a half years ago, I slowly started to gain weight, nothing alarming, 5-6 pounds in a couple of months. But since I've always been thin and athletic, my fiance and I decided it would be a good idea to get a bit more active. I was then completing my last semester as a podiatry student and spent a lot of time studying. So, we started training and being very careful about what we would eat. Results: he was getting fit and for some reason I was not. Actually, I kept putting on more weight and got the typical purple stretch marks on the abdomen. I happened to see a dermatologist to get a cream for an unrelated condition (eczema) and showed him my stretch marks. He barely looked at them and told me that this was probably a hormonal imbalance, that it was very common at the end of puberty (I was 22 at the time!) and not to worry, they would fade by themselves with time...

Over the months, I gradually started to feel more tired and irritable, but I put it on the account of my crazy schedule. I had graduated and started to work as a podiatrist in a private practice (1 day/week), just began as a full-time medical student, started a master degree in research, bought a house, helped my grandmother cope with the recent loss of my grandfather, etc. I did not have time to stop and realize that something was wrong. I actually saw the fact that I could not sleep more than 3-4 hours/night as an advantage, I had a lot of time to do everything I needed to.

Looking backward, I now realize that I neglected myself way too long and that I found excuses for many symptoms that would have prompted the diagnosis. I had an unexplained rib fracture following a very light trauma. Developed a fungal skin infection, but since as a podiatrist I work with nail fungus all the time I thought I might have contaminated myself. Told myself it was all my fault if I was still gaining weight and that I needed to work out more. I thought the hot flashes, tremors and palpitations were the results of stress. The hair thinning and change in texture was noticeable. I had a few days that my energy level was so low that I could not get myself to even stand up and perform the normal daily tasks that I had to do, and a few days that for no particular reason I had excruciating joint pain that would go away by itself after many hours...

A year after the beginning of the symptoms, I saw an old general practitioner for a routine annual check up and he told me that I had high blood pressure... he put it on the account of the white coat fear and stress and did not investigate further (even after I had told him about the difficulty losing weight and he had seen the stretch marks...). In a way, it was kind of relieving that somebody else confirmed that it was no big deal... that I just needed to eat less (that's what he implied when I asked about my weight).

But I did not pay attention to all of this, until my parents started to worry because of my face that was (and still is) so red and swollen. It took me some time to accept that something was wrong, I am and always have been an overachiever, and I always had tons of projects going on at the same time in my life.

By chance, if this can be a chance, I had had trouble controlling my asthma symptoms 4-5 years ago and I had to take cortisone by mouth for many months, resulting in a mild Cushing's syndrome that went away as soon as I discontinued the medication when my pulmonary problem was under control. So I was a bit familiar with the syndrome, as well as I had briefly studied it in school but since it is so rare, it is not something that we really focus on very much. Being a 2nd year medical student, I now also had more knowledge of the pathology... so I kind of diagnosed myself... and now I needed a doctor to believe me! I managed to get an appointment with my immuno-allergist that I had not seen for a couple of years since my asthma was well under control (no wonder why, I was on high cortisol doses without knowing it!). He recognized the signs immediately and sent me for some blood tests that confirmed the high cortisol level, but the ACTH test, as I realized afterwards, was done incorrectly (the sample has to be put on ice) so the result was probably no good.

Even with those results, the endocrinologist I saw was not convinced. Maybe he felt threatened by the fact that I was the one making the diagnosis. Everyone knows that medical students are all hypochondriacs that develop all the diseases they study. Moreover, I had an history of medication-induced Cushing so I could still have access to oral cortisone and induce myself a factitious disease to get attention. Or I could simply be one more lazy couch potato eating junk food that wanted to find an excuse for being obese... Anyway, he still sent me for another series of tests, an oriented his preliminary diagnosis on the incorrectly done lab results, looking for an adrenal mass instead of sending me for an MRI for a pituitary adenoma, which is way more frequent and that corresponds better to my presenting symptoms.

Personally, I'd rather have an adrenal tumor, the prognostic being by far more positive... but clinically and statistically, it is unlikely. Anyway, we will see, I meet with my dear Dr endocrinologist this coming Wednesday to get the results of the blood/urine testings and abdominal CT scan and see where we go from there.

I'd like to hear about how well (or bad) it was post-op from those who had surgery since I will probably have to go through that at some point soon, and I try not to cut back too much on all the things I normally do (work, training, study, research) since this is how I manage to remain sane, even though someday it it very difficult to hold it all together.

Wow, this was a long post, so if someone had the patience to read all of this, thanks. It made me felt good to write down what I have been through so far especially since I have not told anybody except for my close family and I try not to put too much on them... anyway, I can see how it is impossible to truly understand what this disease makes to you physically and emotionally for someone not living it. I hope that going through this will make me a better doctor and that I will not become one of so many practitioners that instantly classify the patients' symptoms as psychogenic as soon as it gets too complicated.

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