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Help and advice need for getting a diagnosis for my son

Posted , 4 users are following.

elaine61567
elaine61567

Can any one give me any help or advice? My son was diagnosed with diabetes age 13(he had ketoacidosis) and acute pancreatitis they wouldn't diagnose him type 1 or type 2 but he is insulin dependant age 16 he was diagnosed with cataracts in both eyes which were removed(and he had his lenses replaced). At 18 he was referred to an adult diabetic/endocrinologist.she did a cortisol test and found it was slightly high-he has the classic hump and stretchmarks all around his middle! (he has skinny legs large trunk)but he's done dextrose test and he suppresses it!!- so she's ruled out cushings-but-I need a second opinion but don't know where to turn(the eye specialists believed that my son's cataract could well be a result of cushings.my son also has high lipid levels but I feel nobody will over ride the endochrinologist. And I have such a gut feeling that all is not right.any advice on where I go from here?

0 likes, 6 replies

6 Replies

  • bap84000
    bap84000 elaine61567

    Posted

    Was the first test "slightly high", actually above normal ranges, or at the higher end? Was this same first test a 24 hour Urine test, blood, ...? Was his dexa test also a "high dose" or "low dose" or both? 

     I have/had recurrent cushings, on the first occurance before my first pituitary surgery, my dexa test was a "false negative", which can occur, I have seen that there can be around a 30% margin for error on this test. You need 2 tests, Urine, Saliva, Dexa, morning blood serum Cortisol.  

    His symptoms certainly sound like Cushing's disease. I also HAD a cataract in 1 eye and my vision was getting worse. After my 2 surgeries and radiation, my cataract cleared on it's own, and my vision lense correction has improved. 

     

    • elaine61567
      elaine61567 bap84000

      Posted

      Hi Thankyou for your reply it's reassuring to find somebody else who also had cataracts and cushings.The consultant who Operated on my son's eyes was very surprised that a 16 year old would have developed such bad cataracts from diabetes! 2 years later when I mentioned to his consultant that he may have cushings- he said that would explain the cataracts!and we both felt that we had found an answer for the symptoms.

      My son's first test was a blood test which showed higher than normal cortisol levels.so they did the 24 hour urine test which also came back higher than normal then we did the dextrose test and my son suppressed it! She said perhaps my son had cilic cushings (not sure if that's the correct word??)so we repeated the dextrose test again and he suppresses it.(she also did another test-urine which looked at all of my son's hormones-it came back Normal-tho showing his kidneys were overworking)then she decided he doesn't have cushings!I practically begged her to let him do the dextrose test again but she refused and has now sent us to another diabetic consultant. I've shown this new lady my son's symptoms and she just went and saw the original endochrinologist and came.back saying no we won't look into it any further!! -I'm absolutely gutted my son hates the hump.and I feel no one can help.my son also takes high amounts of insulin as they believe he is insulin resistant,also another sign of cushings I believe.its unbelievable to see a 21 year old young man with a round middle covered in stretch marks and a large hump between his shoulders he has the classic round face too but slim arms and legs!I'm convinced he had cushings!!!😢

  • vicky61456
    vicky61456 elaine61567

    Posted

    Hi.  Can I ask if you are in the UK or the US.  One of our forum has cyclic cushings and she lives in the US so may be of help to you.  I have just been diagnosed with the early stages of cataracts and sure enough it is yet another side effect of Cushings.  Unfortubately there are many.  Your sone certainly sounds as if he has Cushings.  May I ask why he was tested for Diabetes and why they will not classify him as 1 or 2.  There is a 3rd Diabetes called Diabetes Insipidus which has NOTHING to do with sugar levels.  It means fountain of wee!  A lot of Cushings patients get this but as far as I can see very few Endos know of it.  I now take a pill to stop me getting up in the night but I have to drink a lot during the day so I don not get dehydrated.  Your Endo does not sound very helpful.   Some are too inexperienced to give a firm diagnosis.  Can you ask to see another?  We are always here for you.
    • elaine61567
      elaine61567 vicky61456

      Posted

      Thankyou so much for your reply!!

      I live in the UK.

      My son was always constantly drinking and peeing from about the age of 11 my friends a nurse and she offered to test his sugars as we suspected diabetes-but my son was having none of it!!he carried on until he was 13 when he was struggling to breath and I rushed him to hospital. They thought he had pneumonia but blood test showed he had diabetes ketoacidosis (also lipid counts were so high they were off the scale and the machine couldn't read them!)he wasn't the typical type 1 or 2 and they just diagnosed him insulin dependant(they didn't believe that he had been like this for 2years they felt it would be impossible for him to function on.a daily basis!).after this he gained weight and the cataracts were diagnosed.then at 18 he met the endo who was really enthusiastic about the prospect of my son having cushings!- but I feel she lost interest after he suppressed the dextrose the second time.she referred my son to a colestral specialist as my son still.has high lipid counts?I mentioned to him about cushings but he wasn't interested and told me the test had been done and tests were VERY EXPENSIVE. I've been in discussions with my partner about going private,the nhs saved my son's life and I am forever greatful to all the hardworking staff.but I'm a mum and I have a gut instinct about this!!really glad I found this forum so helpful to find people who understand!! X

  • jazzyanne
    jazzyanne elaine61567

    Posted

    Are you in the uk, you need many tests to rule out cushings ie 24 hour urine, salvia tests, you can go back to gp and get a private referral, You should add yourself to the facebook page there is great advice on there, even if you get a private referral they sent you back to the NHS for the correct tests 
    • elaine61567
      elaine61567 jazzyanne

      Posted

      Thanks for the advice and support!! I've joined on Facebook now.

      And am going to get an appointment for my son to see his gp. Then I'll take it from there☺

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