Cushings

[Bubblegum456]

Does anyone have experience of cushings and if so do you mind me asking what your symptoms were?

I have a diagnosed prolactinoma, so small it can’t be seen on mri and recent brain scans were clear. But I’ve been having strange symptoms for some time now and neurology have diagnosed an overactive nervous system and sent me on my way.

Cushings has always been at the back of my mind due to the following systems - sudden weight gain on stomach and chest (I’m now 2 stone overweight and look pregnant as it’s all on my upper body), round face, really bad flushing across my face (my cheeks burn) on a daily basis at random times, diagnosed leg muscle weakness one sided and a bit of arm weakness on same side, hair has fallen out all around hair line, tired and weird heart rate monitorings on my Apple Watch.

This has all be going on for approx 2 years on/off. I will speak to my endo but don’t want to seem like I’m suggesting another thing to be tested for. I just find it hard to believe all this is caused by stress and an over active central nervous system 🤷🏽‍♀️

Any advice would be much appreciated

Ps all bloods clear

This may seem a random question but have they checked your adjusted calcium (part of bone profile bloods)?

I don’t actually know, I think they ran a general blood panel. I’m not sure what adjusted calcium is or if it would be part of that panel?

Probably not. My reason for asking is sometimes pituitary issues can be linked to primary hyperparathyroidism which can have very wide ranging symptoms. Can your symptoms be related to the prolactioma?

Hhhmm that is interesting, I’ll go have a look as I’ve not heard of that.

I don’t think these symptoms are linked as I’ve had my prolactinoma for 15 years and this all began 2 years ago. 2 years ago I went from fairly functioning (although I’ve suffered from tiredness my whole life) to weigh gain, pain, going to bed at 8pm etc. It was mad!

I also have sleep problems which started at the same time, insomnia and then what feel like panic attacks whilst I’m falling asleep. It’s all very strange and I’m only starting to put it all together now.

It’s just hard going back to the GP again as they clearly think it’s in my head, maybe it is
:(

The symptoms you mention could fit- it may be worth double checking. I hope you get some answers soon.

www.pituitary.org.uk/

Have you had your cortisol levels checked? By bloods and 24hr urine collection?
There is a group on Facebook called cushings UK. They are very knowledgeable