Treatment is getting closer

Once again time has slipped by and it's been 2 months since I posted an update! There hasn't been a huge amount to update though really until now. I've been on the metyrapone for nearly 9 weeks now and it has definitely made a difference, both good and bad. The thing with high cortisol is … Continue reading Treatment is getting closer

IPSS results and next steps

The results are in! 5 weeks after I had my IPSS (to check out what that is look up the leaflet here or have a read of my personal experience of it). Finally it feels like I'm making some progress with Cushing's. I went for my follow up appointment yesterday, 5 weeks after my IPSS … Continue reading IPSS results and next steps

Hospital admission as an adult

With the Cushing's testing, my arthritis and my DVT I've experienced quite a few day clinics and even the odd day procedure in my time as an adult but until my PEs this March I hadn't experienced actually being an in-patient. The last time was when I broke and dislocated my elbow at the age … Continue reading Hospital admission as an adult

IPSS – a patient’s experience

Inferior Petrosal Sinus Sampling or IPSS is sometimes used to pinpoint where the source of Cushing's is coming from, generally when it's highly suspected to be a tumour on the pituitary gland. I was 'lucky' enough to have one of these a couple of days ago as my MRI for my pituitary came back clean … Continue reading IPSS – a patient’s experience

Yet another road block

18th March 2019. 2 years, 6 months and 2 days after my DVT. 2 years and 2 days after I came off warfarin. I'm back on blood thinners for life as I have been diagnosed with multiple large bilaterial pulmonary embolisms. My health just keeps getting better! Still, it appropriately happened in Blood Clot Awareness … Continue reading Yet another road block

Rare disease day

28 February is Rare Disease Day so it's probably a good day for another update on my Cushing's. It's important to highlight rare diseases; yes they affect less people than the big, famous diseases such as cancer but they can be just as debilitating and life threatening, possibly more so because they don't get the … Continue reading Rare disease day

New year, new hospital

Once again it's been a while but there hasn't been very much to report so that's my excuse. I've had a couple of appointments this week so here's what the latest situation is. I had my MRI on Christmas Eve. Not the most interesting way to spend the day perhaps but it's another step forward … Continue reading New year, new hospital