An adventure in Cushing's and stroke

Hi Jen,

I realise it has been a while since your Cushing’s/stroke sagas but I came across your blog and was struck by the similarity between our stories. I have also had a stroke and Cushing’s. Sorry this will be such a long comment but it a muchly shortend version. My tale is very similar to other Cushing’s stories with a few twists to the usual story. In my early 20′s I was diagnosed with Coeliac disease. At that time of diagnosis, I was also found to have osteoporosis. The doctors were surprised at how advanced it was but blamed the Coeliac disease, little did I suspect there was a more sinister reason hidden away. When I was diagnosed I was also deficient in many vitamins and had amenorrhea. Once I was on a gluten-free diet, my vitamins and iron levels improved but my periods never returned.

Fast forward a couple of years and I was noticing that I was putting on weight, getting increasingly hairy, getting acne etc. I was tested for PCOS but was negative. I bruised ultra easily, to the extent that it was a joke amongst my friends who used to poke their initials into my legs. By this stage I was also becoming increasingly anxious and depressed. I went to a couple of different doctors. I found it difficult to explain my symptoms but knew I shouldn’t be feeling like I was. They all put it down to the stress of doing a PhD and said they would look into it more closely once I had finished. Whilst I was writing up I went to a masseur as I was suffering from tired and aching muscles. The masseur noticed a hump on the back of my neck which he blamed on poor posture. This freaked me out as I had noticed this hump myself but hadn’t thought it big enough for anyone else to notice. I knew my posture wasn’t that bad and since I had osteoporosis I became worried that I would develop a dowgar’s hump at the ripe old age of 26! I want home and approached the problem scientifically be googling ‘hump on back of neck.’ :p The top hit was a Cushing’s website and as I scanned the list of symptoms I realised to my horror that it was pretty much describing me. The next time I was at the doctor’s I asked to have my cortisol tested. They were sceptical that I had Cushing’s but agreed to the test as they were appalled that I had already developed osteoporosis. A day after I handed in my thesis (woo!) and one day before I was due to go overseas for my brother’s wedding, the results came back showing high cortisol. The GP asked me to see an endocrinologist but and I planned to deal with it when I was back in Australia.

Those plans got put on hold in a big way as whilst I was in Vietnam I suffered a stroke. After doing a brain CT scan, the hospitals in Vietnam realised they were ill equipped to treat me so I was airlifted to Bangkok. There I had amazing treatment and they started physiotherapy on me even whilst I was in ICU. I had completely lost motor control of the right side of my body and my speech was damaged. Thankfully my comprehension remained intact. My parents were also overseas for the wedding so they managed to get to me quickly and then the process of recovery began! I had two sessions of physio and one session of occupational therapy a day whilst I was in hospital. By the end of my two week stay I was able to walk about 10 metres unassisted. As I had mentioned the elevated cortisol test to my Mum, the Bangkok hospital began testing for Cushing’s. The 24hour urine test came back blazingly high however as I was in ICU whilst this was done and my body was obviously under a lot of stress, they were distrustful of the results. An overnight Dex suppression test showed I was unable to suppress and only then did the endocrinologists become worried.

Back in Australia we struggled to get into see the endocrinologists however this wasn’t a huge issue for me as I was focusing on learning to walk and write again and trying to get through a day without falling asleep! When I finally got in they decided they needed to repeat all the tests. After three 24 hour urine tests came back high and four dex suppression tests all were positive they were convinced! A MRI wasn’t definitive and showed a ‘possible microadenoma.’ We concluded with petrosal sinus sampling (I have to say that was one of the most unpleasant experiences of my life). Finally I was booked in for surgery. I travelled to Melbourne for the surgery and it was a success : ) My cortisol levels dropped to undetectable.

I’m now completely recovered from the stroke (except for minor issues like messy handwriting!) and I’m 3 months post surgery. My cortisol levels are still undetectable which is encouraging (I’m on replacement therapy) and I’m already noticing the changes. I’ve lost close to 10kgs and I’ve gained energy. For the first time in many years I’m looking forward to what lies ahead : )

Jen, I noticed on your blog you don’t seem to make much of a connection between Cushing’s and the stroke. My take on it was that I couldn’t possibly be so unlucky to be affected by two incredibly rare illnesses. My GPs didn’t really seem to think that the two were linked however when I had the consultation with the neurosurgeon he said he’d only be convinced if I had had a fairly rare type of stroke, a sinus thrombosis, and surprise surprise that is exactly what I had. I still don’t understand exactly why, but he seemed to think that these types of strokes were a manifestation of Cushings. I’m not a medical expert but from my reading your “right occipital haematoma and associated subarachnoid bleed, left tempero-occipital venous infarct with haemorrhagic transformation, superior sagittal sinus thrombosis” sounds quite similar to my “extensive acute dural sinus thrombosis at the superior sagittal sinus, straight sinus, vein of Galen, left internal cerebral vein, bilateral transverse and sigmoid sinuses with acute thrombosis of multiple frontal and parietal cortical veins. Acute hemorrhagis cortical venous infarction and ischemia at left frontal lobe……..etc it goes on and on. Since then I have done a lot of reading and I’ve come to the conclusion that venous thrombosis is a rare symptom/side effect of the rare disease Cushing’s. The combination of two rare conditions means it occurs so rarely that there are very few studies on it. As I read more I realise that there are more people in the same boat as us. I’m still thinking how best to make the medical community aware of this absolutely horrid complication of Cushing’s. Any thoughts/ideas?

I hope you are doing well and your awful year is well behind you.
Thank you for sharing your story,

Imogen