Endo appointment prep

Hello

My daughter has an appointment with endocrinology to run short synacthen test/investigate low cortisol. We want to make the best use of this appointment and glean as much info as possible while we're there. As we are new to all of this, I wondered if there particular questions we should ask or specific tests we could request? Many thanks.

10 Replies

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  • I haven't been through this Jmum, but I would want to know: "Is it the case that the synacthen test will only register positives if there is full blown Addison's disease and 90 per cent of the adrenal has been destroyed?"

    "What if my daughter's adrenal gland is partially destroyed or beginning to be destroyed, but it isn't bad enough to register on the test - is there anything we can do to help prevent further damage?"

    Also I would ask if it is possible to test her for antibodies to adrenals. and if the result is negative, which it is well likely to be, then I'd pay for a private antibody test - they're available.

    Have you got anywhere with Josie's gut issues? Any improvement, any test shown anything up?

    Best of luck...

  • Thanks for the advice Aspmama. We are also waiting for a referral to a dietician with an interest in allergy as my daughter has multiple food sensitivities (I don't think she is considered sick enough for Gastro appt). So frustrating that there is zero joined up thinking/working in the NHS. Makes you want to tear your hair out, if you have any left.

  • Not many people "fail" the synacthen test, and, even if you do, the next stage is not usually meds or treatment, but more tests (eg insulin stress test, MRI etc) until you come out normal and they don't have to treat you.

    Test made me cry uncontrollably for no obvious reason, so take tissues - just in case.

  • Thank you Angel, that's very helpful.

  • I'm probably cynical as I came out of the insulin stress test and collapsed in the hospital car park with headache, dizziness and stomach/back pains, and it still came back normal!!

  • Does josie have panic attacks by the way?

  • Hi Aspmama. Maybe a little. She has become quite depressed and anxious and has a very short fuse.

  • Hi, how did it go?

  • Thanks for asking. Appointment was pretty disappointing. Said he would run some tests but doesn't necessarily think he'll find anything. Apparently the NHS doesn't do chronic illness.

  • I found an interesting series of posts when I googled panic attacks addisons in which two people gave symptoms from experience of addisons in childhood. I will summarise here in case anyone else is searching.

    no pigmentation (not always there)

    high blood pressure, which is rare, it's usually low.

    needle phobia

    inability to eat, suspected anorexia, but in fact anxiety was making eating difficult

    inability to handle stress of mainstream school

    severe anxiety

    delayed puberty

    underweight

    fatigue sitting or standing

    salt craving (in teenage this might be for crisps)

    high serum potassium

    low serum sodium

    low blood pressure .. this is aclassic sign

    fainting,weak

    I suspect that girls with this would often get a wrong diag of anorexia, and that some boys might get a wrong diagnosis of aspergers or high functioning autism

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