Possible Cushings Syndrome?

Posted , 6 users are following.

I know you must be getting these sort of questions a lot but I could really use some help right now, as I have seemed to have stumped doctors with my bizarre symptoms. I am a 23 year old male and I started to feel unwell about a year ago. The first strange symptom I got were stretch marks. I had some stretch marks following a growth spurt in my teens but these stretch marks simply appeared following any sort of excerisise. The bizarre thing is that I can feel them appear, it is like someone is slapping a rubber band against my skin. I have them under my armpits, on my stomach and near my groin. The ones on my groin are about 2cm in width and they are pinkish/blueish in appearance. Shortly after the appearance of stretch marks I found a lump under my ear, which I have recently found out is possibly a benign tumor in my salivary gland (the biopsy was inconclusive). I then became very fatigued, and a couple of months later I started experiencing arthritic style pains in my hands and knees, followed by chronic back pain. I mentioned Cushings to my doctor, who then told me to try and lose weight (I was 15 stone). I managed to lose about two stone, which, according to my doctor, meant that Cushings was now ruled out. I lost a lot of weight in my face, arms and legs but could not shift the fat from my stomach.

Lyme and bartonella were mentioned and I was given dioxcycline, which truly helped. I was given a month's long course and the stretch marks started to stop and I was feeling more like myself again. The moment the course ended, all the symptoms got worse again however. My doctor said it was glandular fever with reactive arthritis but the EBV virus was not found in my blood. In February this year I noticed that injuries are healing at a much slower rate, specifically on my feet, and that I am more prone to catching skin infections. I tested negative for auto-immune diseases, lyme and bartonella. Currently I am suffering from all the aforementioned symptoms but the hair on my head is falling out. I have no extreme weight gain, no buffalo hump, but do have occasional moodswings and problems concentrating. I also have pain in my glands when I drink alcohol. 

Any helpful comments would be greatly appreciated.

1 like, 11 replies

11 Replies

  • Posted

    Hi Bart,the few of us on here are really not medically qualified to diagnose your problems.However,we have been in the position of not being able to get an easy and quick diagnosis,because Cushing's is a rare condition.Mine took 5 years from the start of symptoms,which initially were intermittent,but the doctors were just not looking for an unusual illness.

    Please keep on at your doctor,or see a different one in your practice to see what they say.Write everything down,so that the doctor can see the full picture,not the odd one or two symptoms.Think to yourself about all areas of your life,whether you sleep badly,wake early,feel tired in the day,what aches and pains you have,what your mental state is like,what your skin is like.Show all this to the doctor.Ask to be seen by a specialist,if possible.Show him/her photos of yourself before and throughout the time you've had these symptoms.There just might be something that will make them click.Sorry I can't be more help,but didn't want you to have no answers at all.

    Good luck.Gill

  • Posted

    maybe paying for a private cortisol blood test too put you mind at rest
  • Posted

    Hi. I have major problems with my gp and this disease. If I left it to them id be dead. Either get your gp to refer you to an encronologist or pay for one. An initial session is about £150-200 they will look at you, and order test. Blood tests are expensive and this disease takes a long time to diagnose. If you can afford it, do it but get a Dr who is on NHS do you can get back into NHS if needs be. It's how I got started.

    You are extra rare make- get your GP to run a base cortisol blood test. This will let you see if you have high cortisol.

    Oh- I lost four stone. Everywhere bit my tummy. I had piturity tumour and cushings disease.

    Joking cushings disease Facebook forum

    Good luck

    • Posted

      Bloody auto type! You are rare being male. Join the Cushing Facebook page.
    • Posted

      Hi Georgina,which facebook site specifically please? I've been wanting to join one.Gill
    • Posted

      Called Cushing disease. You have to wait to be excepted but it has people from all around the world, pre and post op. It's quite good for support and questions.
    • Posted

      Thats a great page am on it, you can get a private test for 39.99 for cortisol its a starting point
  • Posted

    Hi Bart,

    So sorry you are feeling so rough.  Cushings is the most awful thing to diagnose and most GP's will never have a patient suffering from it.  You are rar.  Do ask to see an Endocrinoligist or ask for the necessary tests.  As mentioned before write things down and take someone with you when you go.  Good Luck

  • Posted

    Thank you all for your kind words. Today I collected the tablets for my overnight dexamethasone suppression test and now I need to arrange a morning blood test. Hopefully I will have some answers soon.
  • Posted

    great news, lets hope you get some results soon.  At least then you will know.  If you can let us know how you got on.  All the best.  Vicky

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