Cushing's syndrome??!!

[Anjeleena]

Do any of the lovely thyroid sufferers here have Cushing's syndrome or have any advice concerning cushing's???

I have a very awful feeling that I'm suffering from this........

[rosetrees]

What makes you think you have Cushings? If you do, then your doctor should be testing and treating you for it.

[Hidden]

Do not delay seeking medical attention if you have symptoms of Cushings it is not a condition to be taken lightly

[humanbean]

Have you ever done an adrenal stress profile - a four part spit test by Genova?

gdx.net/uk/product/27

If your cortisol levels on that test were very high then you could have Cushing's, but the medical profession "doesn't believe in" saliva testing for cortisol. (I've read that the World Health Organisation, NASA, and the FDA are happy to accept them, and researchers use them quite often, although I haven't looked for proof of this.)

Why do you think Cushing's is a possibility? Have you seen your doctor about it?

[Anjeleena in reply to humanbean]

I intend on speaking to my doctor about it.

My surgery have me earmarked as a hypochondriac and are getting annoyed with me I'm sure

They just don't seem to get that I was a happy healthy person until 5 years ago and since they diagnosed and started treating me for my thyroid condition ive actually felt worse than ever

It feels as though they like to blame my thyroid for everything instead of checking that it's not just that

[Anjeleena]

The last few years I have had a few developments in my health situation that I have assumed to be my thyroid but it seems some of those things just don't fit

Things like flushed red cheeks. I seem to have developed two 'pockets' underneath my cheek bones that are solid and have recently noticed lots of tiny White hairs growing on my face and neck. The top of my spine looks 'humpy'

My moods are erratic and I have been diagnosed with a sinus rhythm but my pulse rate wasn't fast before I had my daughter and recently it's been around 120bpm when I've visited the docs and blood pressure has been up and down and up again over and over

I hold water and my weight has been hard to deal with, though my arms and legs don't seem to hold this extra weight

In worried the doctor will just wave off my concerns though

[humanbean in reply to Anjeleena]

My pulse rate became erratic and I had bouts of extremely high pulse (150 beats a minute). In my case it was low iron that caused it. I've been treating myself with iron supplements for nearly 18 months now, and have been paying for my own blood tests (full blood count, iron studies and ferritin) to be sure I wasn't overdoing it. My heart is behaving itself much, much better now.

It is really vital to get copies of any blood tests, including the reference ranges, done by the doctors. The non-thyroid things you need to know are iron, ferritin, vitamin B12, vitamin D, and folate. Just being in range isn't sufficient, you need to be at optimal levels, both for your general health and to get as much benefit from thyroid medication as possible.

I had/have high cortisol as well (diagnosed by the spit test I mentioned above), but it isn't high enough to be diagnosed as Cushing's. I self-treat with Seriphos by a company called Interplexus. It can be bought online without a prescription. Look at the reviews for it on amazon.com (not amazon.co.uk because there are very few there) and iherb.com.

[Anjeleena in reply to humanbean]

Thankyou I will ask for my blood results to be printed when they come in next week

[Bagpuss]

Hiya

I'm just going through a lot of testing for Cushings myself. Nothing certain yet but it is looking possible.

I never discussed it with my GP only my endo because of the extremely high weight gain I ve had. i kept on about it and eventually he did some testing.

Unless your cortisol is off the charts and you are a clear cut case , it can be very hard to diagnose but there are cyclical , episodic and mild cases. The effects on the body can still be profound.

I did have a high result on my saliva test and the endo has taken a copy to show the team! In fact I asked about saliva testing and they do do it but only in certain hospitals as they don't have a range - each lab has to have its own range for the test to be valid I think. He is looking into it as well. So it's not that he doesn't feel its valid I don't think. More like they just don't know how to interpret it yet. Think we are behind as is often the case ! He has lots of urine tests and some bloods plus an MRI.

I would compile a list of symptoms and then check out the pituitary foundation website which has some advice about how to ask your doctor to check things out or refer u.

Are u already under an endo ?

X

[Anjeleena in reply to Bagpuss]

I haven't been referred to an endo yet but will keep pushing for one

Thanks for the advice

I definately fit most of the symptoms listed for cushings so will probably not bother asking the doc and ask for referral to Endo as my surgery seems to not be able to do anything!!!!

[Bagpuss]

mine is like that too and she doesnt knmow anyting and is quite happy to tell me she has no idea!

Call the pituitary foundation helpline and ask for details of hospitals and endos who are knowledgabke about cushings otherwise you may find they do one test and dismiss you. It seems from all my research as though many cushings patients do retuirn some normal reuslts and it is a lot more complex than straightforward tests as not one is infalliable. They dont have a definitive test yet and they need to look at the clinical pictrure too.They were v helpful when i spoke to them and have a specialist nurse helpline too for questions.

Good luck - wish you well

x

[Anjeleena in reply to Bagpuss]

Thank you that's a great help x

[Bagpuss]

Good luck !