Could I Have Cushing Syndrome?

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Hello all i have been in and out of the doctors lately and no one has figured out my problems. 4 years ago i started having facial flushing aswell as acne. My stomach started to have constant pain with diarhhea/constapitstion. 2 years ago the flushing spread to my chest knees and shoulders. I started to get permanent fatigue. I have always lifted weights so i stayed pretty thin and had a nice physique. Last year i started dieting, mainly less carbs, to see if that would help my problems but i actually lost too much weight 6’2 170lbs->150lbs) and didnt see any improvement. Within the last 5 months i stopped my diet and started eating sugary foods again and now weigh 188lbs (30lbs increase in 5 months). All my weight went to stomach chest and worst of all my face. I have extreme “chicken legs” even though i lift. Right now im dealing with extreme purplish flushing (face chest shoulders knees), acne, fatigue, insomnia, puffy face, diarhhea, easy infections, and slow wound healing. Lab tests: low platelets (110k), elevated liver enzymes, elevated histamine. I have had a ct scan for carcinoid and it was negative (getting a special new pet scan soon).

My question is, can this be cushings? Im a little overweight but not fat with all my fat being on my stomach, chest, face. I had symptoms for a few years before the weight gain. My face however looks like very rounded when it usually isn't. I dont have straie but my abdomen is always a little reddish on the sides. I tested negative for all alergies. I have before and after pictures aswell.

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10 Replies

  • Posted

    Histamine is usually a result

    Of an allergy .

    It is an inflammatory response.

    It could be dairy or gluten.

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    • Posted

      Im on Zyrtec and Zantac (h2 histamine blocker) aswell as Singular now (mast cell stabilizer) and nothing has helped any of the symptoms. I went full paleo for a year and didnt eat dairy, gluten, soy, etc with no improvement. Ive tried cutting out almost every type of food. I never get hives, swollen tongue or the normal symptoms of an acute allergic reaction.
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  • Posted

    Dear zwright..

    The 3 major symptoms of Cushings disease are: a buffalo hump, a moonie face and rapid weight gain..example..I went from 110 lbs to 276 lbs in 6 months while eating baby food and throwing it up. If you believe you have symptoms of Cushings..request a 24 to 48 hour urine test for high cortisol in your urine, and blood tests for cortisol and ACTH hormone stimulation tests to check for pituitary or adrenal excess. In my opinion no i do not believe what you are describing is Cushings, but if you have thise tests it will rule that in or out.

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    • Posted

      thank you. i agree weird stuff going on. Im gonna request the urine test for sure. I also heard the night salivary test is good. More so i just want to rule stuff out to help peace of mind
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  • Posted

    Hi, I agree with what all the others say.  it  may be that your GP is not even aware of Cushings, many doctors will never see a case in their career.  Mention it to him/her and ask for tests that should show if it is Cushings or not.  I myself did not have the symptoms you portray.  Usually with Cushings dieting to get rid of the excess weight will NOT work as all the food goes straight to fat.  Please let us know how you get on!
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    • Posted

      thanks for responding! thats exactly what i was thinking while doing research. Odd how i can lose weight and gain weight so fast without trying in short periods of time.
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  • Posted

    Ive done all the allergy test including environmental. I cut dairy and gluten for more than a year with no improvements. Ive tried even cutting meat as a whole. As for the weight gain this is the first time in my life I am not muscular and fit however i did eat very poorly for a few months because of the stress. The weight did only go to my stomach, chest and face. I dont have the buffalo hump but i do have a very rounded face now (with pretty bad acne and purplish flushing to the point where my face is always ruddy now). My dad and friends have all agreed that my face most of all look completely different from before as I am normally very slender and thin boned. I am barely overweight its just the distribution of the weight is very off compared to what i use to look like.

    I briefly mentioned it to my pcp doctor but he said no because i dont have the dramatic weight gain. My dad is gonna get me an appointment with an endocrinologist asap. In 3 weeks my hematologist/oncologist is setting up a PET scan for carcinoids, and after all the research ive done they can be tiny and secrete both ACTH and histamine. My BP is not high either but other than that i have every single symptom of Cushing. Whatever it is every doctor said its something extremely rare. I agree with the rest of you its so weird if it turns out to be Cushing. I dont have the main symptoms but i have the others. I have read a few cases where the patient didnt have the weight gain and one even started losing weight.

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  • Posted

    For your sake im praying this is not Cushings. As I've been dealing with Cushings for over 30 years. I've had 2 pituitary surgeries 28 years apart and now we are looking for a ectopic tumor which could be anywhere, and many times not able to find it. Like I said have your cortisol levels and ATCH tested by a Endocrinologist who is well trained in Cushings knowledge. The symptoms you describe are confusing and without the buffalo hump..I find it highly unlikely its Cushings. The blood and urine tests will help the diagnostics.

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  • Posted

    Hi.  Brilliant that your Dad is arranging for you to see an Endocrinologist.  He/ she will be able to do the correct tests to see if you have Cushings.  Let's hope that it is not Cushings but something that can easily be remedied.  Let us know how you get on and good luck!

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