Diabetes and cushing's

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I've recently been diagnosed with cushing's which after all the tests was attributed to my pituitary but no tumour was found.  I've been type 1 diabetic since 1989 and my consultant believes it's down to my low blood sugars and is refusing to put me on treatment for the cushing's.  I have good diabetic control which  has been that way for many years.  The symptoms of cushing's started to present in the last year.  Just wondering if anyone else has had this problem and if it is caused by my diabetes does that mean I can reverse it?  My concern is that the focus will be on my diabetes when it's not that that's causing it

Please help!  Thank you

0 likes, 4 replies

4 Replies

  • Posted

    Hi Karen, Can you tell us what tests you had for the diagnosis of Cushings to be made.  If it is because of the Pituitary Gland what tests did you have that showed there was no tumour present.  I can't really get to grips with this.  I have Diabetes Insipidus as a result of the Cushings but would be glad to hear from the others about your case.  Take care, we will be in touch and I am sure others will comment too.

    • Posted

      Hi Vicky, thanks for responding.  I had two 24 hour urine collections to start with.  Cortisol levels were high in both.  I then had the dexamethasone suppression one night and blood test the next day.  The consultant questioned if I’d actually had the dexamethasone so my results were high.  I then had a week long of low dose dexamethasone, then high dose dexamethasone with salivary cortisol, blood cortisol and 3 24 hour urine collections throughout the week.  Results ruled out ectopic cushing’s.  I went for an MRI on my pituitary and no tumour was found. 

      I’ve just been diagnosed with diabetes insipidus – a nice addition to my type 1 diabetes!  They’ve tried me on DDAVP for that but I’m allergic to it so it remains untreated.  Reading what you said about getting diabetes insipidus as a result of it, I wonder if I’ve got it for the same reason.  I keep looking back wondering when it started because I was diagnosed with an underactive thyroid about 4 yeas ago.  Also my menstrual cycle stopped about 5 years ago. 

      I don’t drink alcohol, I eat healthily, I exercise every day – even now though it’s so depressing to gain weight despite that.  I’m so confused!

  • Posted

    Hi Karen,

    ?I am on Desmopressin for my Diabetes Insipidus and thyroid tablets to control my thyroid.  These are things I have as a result of the Cushings.  Tumours very often do not show up on an MRI which is why most surgeons will ask for a Petrosal Sinus Sampling to be carried out.  This will show any tumour and also it's exact location.  It is not pleasant but well worth it.  If you have Cushing you will put on weight no matter what you eat.  All the food goes straight to fat. Sometimes the symptoms resemble Polycystic Ovaries so I am told. Is it an Endocrinologist you are seeing?  It is such a rare diease that it is very hard to diagnose.  You could ask about the Petrosal Sinus Sampling.  When are you being seen again?  Please do not worry, you are on your way and we are here to help.

    • Posted

      I'm seeing my consultant next week.  He's an endicrinologist but diabetes specialist.  I think that's why he's focusing on the diabetes aspect but that doesn't help me, especially if he's wrong, which I think he is.  I've read about the Petrosal Sinus Sampling.  I've asked him about the dexamethasone-CRH test as I've read that that differentiates between pseudo and actual cushings.  I'm guessing if it was down to my diabetes that would highlight it's pseudo, not actual.  I pretty much only eat fish/meat and veg/salad.  I have for years.  Thanks again for your support

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