Body acts like diabetic but no diabetes? (Cushings / Cortisol?)

Posted , 4 users are following.

I have recently been tested for diabetes and I apparrently don't have even mild insulin resistance according to the doctor. 

However, my body acts like I have diabetes.  If I eat anything carby or any sugar and or fruit I cannot lose weight and I gain it pretty fast around the mid section.  It's ridiculous. 

But as the doctor said I am not even insulin resistant and excercising 5 days a week has not made any difference to my weight at all.  If I do heavey weights I seem to become more insulin resistant but the tests still show up normal. 

Is it possible that my Cortisol levels are high.  If they were high I would no doubt have digestive issues (which I have) and the insulin resistant weight gain to go with it.  Could this spell Cushings disease or something similar. Maybe a thyroid issue? 

I have had this problem since I was very young, before my teens so it's been in my live forever.  I am well into my 40's now and symptoms have not dissapeared.  If anything they have become worse.  

I am hoping, and would be highly appreciative, if someone could suggest what might be wrong with me as I'm looking to get more tests done. 

0 likes, 12 replies

12 Replies

  • Posted

    Hi Dominic,

    Cushings is a very difficult disease to diagnose particularly if your GP has not had a Cushings patient before.  Soetimes if you have Cushings a side effect can be Diabetes Insipidus which is NOTHING to do with sugar levels.  Even high position hospital staff have not heard of it.  You could ask to be referred to an Endocrinologist.  If you have Cushings no amount of sieting will help!  You will gain wait no matter how much or little you eat.  Thyroid problems can also occur.  Do ask your Doctor for a test for your Cortisol level and a test for thyroid and Diabetes Insipidus.  Best of all see an Endocrinologist who will at least have some understanding of what you are saying.  Good luck and let us know how you get on.  I am hoping that others will reply to you as I never remember what the tests I had were called!

  • Posted

    Hi Domonic,

    Vicky's said exactly what I was going to say,as it sounds like Diabetes Insipidus.

    I recentlt went for a test, completely unrelated to my endocrine problems,taking my written notes of conditions and medications with me. The specialist read the word Diabetes,and I had to explain to her what it was, and nothing to do with the well-known Diabetes Mellitis.Gill

    • Posted

      Hi Domonic,

      As Vicky said Cushing's disease/syndrome is hard to diagnose,mainly because it's rare,so the doctor doesn't even look for it.Mine took 5 years to diagnose from the start of noticeable symptoms,but looking back,I think it was building up for far longer than that.

      IF you have Cushing's,you will be putting on weight,even if you have diabetes insipidus.You will be peeing a lot day and night,and probably have thirst with it.

      Do you sweat a lot,or at least what you might consider as abnormally compared to others?Do you have stretch marks on your tummy?Do you have a bump at the top of your back?

      The thing is both Vicky and I have had Cushing's,and it's more prevalent in women,though still very rare. As a man,it may affect you in slightly different ways,as obviously our hormones are different in some areas.

      Weight gain is normally round the trunk,and I gained "American footballer's shoulders" with mine.You,being a man,may not notice this so much.

      What made you go to the doctors in the first place,for your doctor to check for diabetes?


    • Posted

      I went to the doctor to check for Hypothyroidism.  But the doctor gave me the bare minimum of tests for Hypothyroidism and instead looked for something to blame my symptoms on. Liver, Cholesterol, Diabetes .  When everything came back normal he then told me it was all in my mind.  Can you imagine how furious I am about this.  They take money then flick you off as an idiot. Anyway, it still could be Thyroid as from what I understand just checking TSH isn't enough. 
    • Posted

      No,TSH isn't enough.

      Do you think you have increased thirst and abnormally frequent peeing?

    • Posted

      Not really.  I went through a phase of that but I realized it only came when I ate fruite or bread, pasta etc.  
    • Posted

      Hi Domonic,sorry replied out of order,so my response is after Deb's answer.Initially my symptoms came and went in phases,but I'm still not prepared to suggest what you have wrong.It may not be Cushing's at all,but I do think you need more tests.Gill
  • Posted

    Hi Domonic and welcome to my world.

    Diabetes Insipidus can be attributed to cushing's, especially if you have had pituitary surgery. I lost all my Anti diuretic hormon post surgery and had to replace it with desmopresson. I was peeing 400 mls of urine every 15 to 20 minutes.

    But i digress......

    Before i was diagnosed with cushings, i was diagnosed with Diabetes Mellitis type two. My sugars were all over the place. Cushings can cause high sugar levels. The only way for this to be diagnosed is thru a 3 hour glucose tolerance test. Did your doctor do one of those?

    And other thing cushing will do is increase blood pressure, so keep an eye on that.

    As far as being diagnosed for cushing's, it takes many tests to get a diagnosis. I had 4 months of constant testing. 24hr urine free cortisol, Midnight saliva test followed by Dexamethasone suppression test then 8am blood test. These rotated for 4 months. Then i had an MRI brain which was inconclusive. So they did an Inferior petrosal sinus sample and that indicated an adenoma ( benign tumor ) on the left side of my pituitary gland. I had surgery with the plan to remove the tumor. They did pathology testing while i was under anaesthetic and it showed diffuse enlarged and over bundance of ACTH cells through out the whole pituitary gland, so they removed 95% of it in the hopes that would get me back to normal. They had to leave 5 % to protect the stem that leads to the hyperthalamus. I am 19 months post op and my cortisol levels are still high. I'm kind of just living with it now. My sugars are still stupid. I see the endocrinologist again next week.

    Thats my story smile

    Now my advise. Ask your general doctor for a referral to an endocrinologist who specialises in cushings....there are not mant of them around. Get on the internet and google for your area. Find your own doctor. Thats what I did. After 2 years of stuffing around with my GP i saw the endo who ordered the first round of tests and that was the beginning. She was the first one to tell me it wasnt all in my head that there was definately something wrong with my hormones. She tested all my hormones, genetic markers, Anti nuclear antibodies, you name it she tested it !!!

    Thats the only way you will get an answer smile

    Good luck


    • Posted

      I agree,you need to ask for a referral to an endocrinologist,I think,as it sounds like more tests need to be done. However,it sounds like you may need to see a different GP,if your current one is not taking you seriously. What area are you in?
  • Posted

    Hi Dominic,

    Thank goodness for Debs who knows and can remember all that happens to us when we are awaiting diagnosis.  Good luck and keep us informed!

    • Posted

      So true Vicky.Mine's even further back than yours. The one thing I remember clearly was having to do a 24 hour urine collection,and having the embarrassment of not being given enough bottles!

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