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 and the results have confirmed it’s pituitary. So I can now officially say I have Cushing’s disease (all Cushing’s is Cushing’s syndrome, only pituitary Cushing’s is Cushing’s disease). Of course I had to continue being awkward though. An IPSS in theory should show which side a tumour is likely to be on because one side will have higher ACTH levels than the other. No, not mine, it’s the same on both although this could be because blood pooled up there and mixed together or it may be that the whole gland is going screwy. Because of this my hospital wants to get a second opinion from another lab. It is without a doubt Cushing’s however, due to the fact normal levels of ACTH for this test are between 7 – 63 and mine was 2000 on each side!

I’m finally on some treatment whilst waiting for this second opinion. The ultimate treatment will be surgery but in the meantime I’m on some pills called metyrapone. What happens in a normal system is the pituitary gland creates ACTH which tells the adrenal glands to produce cortisol. When there is enough cortisol the adrenals send a signal back to the pituitary to say stop making ACTH, we’re good thanks. What’s happening in my system is that when the pituitary is getting this signal it’s basically going “nah, I’m ok thanks, I’ll keep making this stuff, you just be quiet”. The metyrapone will help to make the pituitary listen to the adrenals. I’ve been started on a low dose which is to increase in a weeks time and then I’ll be checked in 2 weeks and further adjustments made from there. Then eventually it will be on to surgery. This should all help control some of my symptoms, making me not only feel more like I can live life a little more normally but also help reverse some of those which will make surgery more risky, such as my high blood pressure and the massive weight gain (I hope). It’s not a cure or a long term treatment by any means but it should make a big difference in the meantime.

Onwards and upwards!

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