Cushings Syndrome - anyone know anything about it?

[Jonette]

It's ticking a lot of boxes for me.

Do you take steroids?

The only steroids I take is an asthma inhaler - Seretide 500 - twice daily. As far as I was aware, inhaled steroids don't go into your blood stream.

What are your symptoms?

These are the ones I have from the list of symptoms from the website.

weight gain (around tummy area only)
thin arms and legs
a round face
increased fat around the base of the neck (don't know whether it's fat or just swollen)
easy bruising (bleed easily)
weak muscles
Menstrual periods may become irregular or stop. (They have on occasion stopped for years and then become almost constant or completely irregular).

@IHaveBrilloHair We used to have a crazy lady from our old town with a mad sort of grey perm that stuck up on the top of her head in a frizz. She was widely known as The Brillo Pad.

It does sounds as if it could be Cushing syndrome. I'd recommend seeing your provider.

Inhaled steroids do not usually cause this unless you're taking a very high dose. I would suggest that you have your provider review your inhaler technique, though.

The website suggests it's the pituitary gland producing more cortisol than necessary. Could the pituitary gland producing cortisol at a high rate for years due to intense sustained stress produce the same symptoms?

There's not much technique involved in the inhaler apart from to inhale it.

OP you need to see your GP as people have said on your other thread. If you are generally thin with a swollen abdo it could be a myriad of things.

Must examples of people with Cushings I have seen are generally overweight but with thin limbs.
I think you are saying that you are generally thin with a swollen tummy?

Yes, very thin with a swollen tummy.

OP you would bruise very very easily.
Look at pictures of yourself from 5 years ago, has your face got rounder?

You need to see an endocrinology specialist if you suspect cushings. If you're lucky it will be the steroids.

I had every single symptom, and then some but luckily no Cushings.
I was on high dose steroids for a couple of years though.

Yes, I've a swollen face and fat neck. Good luck to me trying to get referred - my GP is useless.

If you can afford it, go private for your first endo appointment.

Is your whole abdomen swollen or just your tummy?

Most of my hair fell out too, and what was left went curly, my body hair fell out, but I did grow lots if hair on my face, so that was fun.
I'll dig out a couple of photos if I can find them and pm them to you OP

Of my face/head btw, nothing else!

Yep hair falling out, excess facial hair, obvious stretch marks on your abdomen.

My hair is falling out in clumps. No extra hair.

My belly is all jelly and big. No stretch marks though.

My Mum had it. Looking back, we think she had it for some time before it was diagnosed but you can see the change in her in photos with the benefit of hindsight. She was back and forth to the GP and nothing diagnosed. Then one day she went with my Dad, and my Dad went through every single symptom she was suffering from. The GP (who was a locum that day) thought it was Cushing's and referred her to a specialist. The specialist said it is unusual for GP's to spot it. My Mum wasn't on steroids hers was caused by a tumour on the pituitary gland.

A) If you’ve tried to get a referral from your GP and they’ve refused then ask for a second opinion or make an appointment with a different GP.

B) The fact that you name called a poor woman and describe her as a ‘crazy lady’ is pretty disgusting. I hope no one is doing the same to you behind your back.

Not helpful, but there was a story with a funny aspect in the Telegraph earlier this year, a woman googled Cushing's disease after her horse died from it, and realised she had the same symptoms herself.

“You can imagine what my GP thought when I came in saying I thought I had the same condition as my horse.”

www.telegraph.co.uk/news/2019/01/27/celebrity-photographer-diagnosed-disease-killed-horse-undergo/

My friend had this, GP was useless and it only got diagnosed when she paid for a private endocrinologist. Hers was caused by a cancerous tumour on the adrenal gland which is a rare cause apparently, mostly Cushings is caused by a benign tumour on the pituitary gland and is easily fixed then.

I'd go private ASAP if I were you OP, if my friend hadn't gone back and forth to the GP for the first year being told it was IBS / depression / menopause, then she'd still be alive today.

@wherehavealltheflowersgone

The pituitary operation isn't brilliantly successful. It is a difficult place to operate on and the risk of damaging other parts of the gland is high. If it works, thats good news. However it doesn't work for a lot of people. Cushings is however very rare (from "natural" causes, from medication its incidence is higher).

The pituitary gland doesn't produce cortisol. It produces ACTH, which causes the adrenal glands to produce cortisol. Cushing syndrome can come from a pituitary problem, an adrenal problem, or exogenous steroids.

If your inhaler is an MDI (resembles a little periscope), there absolutely is a technique involved. I tell my nursing students to always evaluate patients' inhaler technique because people can get sloppy, and if you aren't taking it properly it's not doing its job.

Dry powder inhalers such as a Diskus or Turbuhaler don't require much technique.