Do you think my child has Cushings?

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My 14 year old daughter has had symptoms for the past year or so, ever since she began menstruation. Her symptoms are: heavy prolonged menstruation, unexplained weight gain, extreme tiredness and fatigue and can barely get up in the mornings, cold hands and feet, tingling pins and needles sensation in legs and feet, constipation, brittle nails, thinning hair, anxiety, depression, extreme mood swings, anger, purple stretch marks on thighs, low blood sugar/hypoglycaemia, craving carbs, sugar and salt, etc. She has not been herself for a long time and we are desperately in need of answers. She has had tests for under active thyroid (blood and urine) and they have come back as normal. She is on a long waiting list to see a paediatric endocrinologist. It's so hard to get an appointment with our GP as they are so overstretched. Do you think I should demand answers sooner as if it is Cushings, it could be very dangerous couldn't it? Many thanks for your thoughts and opinions on this Sheryl x

 

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8 Replies

  • Posted

    I would certainly ask that they rule it either in or out with at least a cortisol level.  I would demand answers but at this point in time it’s not “dangerous”.  If left untreated, over time it does damage that eventually recovers once treated.  
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  • Posted

    I would demand it. Maybe see if you can get on a waiting list to speed it up. Might be worth it to go out of network and pay to have some urine test done.
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  • Posted

    Hi sherry

    Hope you and your daughter are fine

    My advice to check cortison with ACTH at 8 am and she should to be fasting, and stop any medication may effect on test.... Bcz cushing disease diagnosis depends in the first on this test after that you can go to next step... So if your appointment is hard those days... Go to lab and ask them to do those tests

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  • Posted

    Hi Sheryl, How awful for you and your poor daughter.  You must go back to your GP and ask for further tests to be done or maybe depending on which country you are in, you could pay to see a child Endocrinologist.  it is not dangerous at the moment but obviously the sooner you get answers the better.  Please let us know how you get on.
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  • Posted

    Thank you to everybody for your kind and helpful replies. I will seek help as soon as I can find it and keep you posted. We live in the UK where it's virtually impossible to get a GP appointment very soon, at least in our area. There are no private paediatric endocrinologists around either. I have looked high and low. If anybody knows of any, please do let me know. We live in the South West but would travel anywhere for the help! Thank you once again. Best wishes, xxx

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    • Posted

      My Endo is Dr Alison Evans who works at Cheltenham, Gloucester and Tewkesbury. It may be worth asking your Gp to refer you or contacting her direct.  Good luck.
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  • Posted

    Thank you once again for your help. We went to a naturopath the other day and after taking a blood test and analyzing it under her microscope, she reckons that my daughter is having some sort of adrenal crisis - which perhaps points to Cushings or Addisons? She is sending a full report in a few days of her findings but in the meantime, I'm reading up on everything I can about adrenal malfunction. Am I just being paranoid/hypochondriac/over protective mother!!  S x

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  • Posted

    Not at all.  it is important that you find out what is making your daughter poorly.  I had a Pituitary Tumour but there are others on the forum who have had a tumour removed from an Adrenal gland so I am hoping that they have responded.  Keep up your efforts.  It is a long journey just to find a diagnosis for Cushings.
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