Hi, I would be very grateful for any advice etc on the following.
My 9 year old daughter has had a blood test come back with borderline low cortisone ( that’s what the doctor has described it as).
She is waiting for a test but apparently it can take months. The doctor has mentioned Addisons and under active thyroid.
I am really concerned as I know nothing about these things and there is just so much info… some quite conflicting. She has a lot of tummy aches and feeling such. Is very pale with dark circles. Full blood count was okay.
thanks
Written by
Karatesarah
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Good morning. The first thing I suggest you do is obtain a print out of those blood tests. You have a legal right and it’s common practice amongst forum users. Lots of us also have access to our records online.
The dr’s receptionist is who you need to ask, not the dr.
Once you’ve got hold of those, post the information here (or in a separate post if it’s a few days from today). It’s really important to include the ranges too.
Has your daughter had any other blood tests? Vitamins and minerals such as ferritin, B12, folate and vitamin D? Has she been tested for coeliac disease?
Was this a regular check up appointment or did you go in because your daughter had been complaining of particular symptoms?
As J972 notes, you need to get the full copies of the results (which would include each tests range). In many tests, doctors will interpret in range” as “normal” but there is a lot more to it, and for some tests being low or high “in range” can help identify root causes.
I would have guessed the blood test was actually done for cortisol. I haven't heard of anyone testing cortisone before, at least not in the UK. But I could easily be wrong.
Just for info this link describes the difference between cortisol and cortisone :
If I understand it correctly, cortisone is an inactive pre-cursor to cortisol (which is active). If it was cortisone that was measured I'm wondering why they tested that instead of cortisol. It doesn't make sense to me, unless the cortisone test is cheaper than the cortisol test.
If there is a risk or suspicion of your daughter having Addison's Disease or some other form of hypocortisolism aka Adrenal Insufficiency (very low cortisol), then (in my untrained, non-medical opinion) it isn't something that should be left for months.
Make yourself familiar with the symptoms of Addison's Disease and Adrenal Crisis (printing them out and sticking them on the fridge might be a good idea, or perhaps somewhere where your daughter won't see the lists in case they worry her, or perhaps keep a link on your phone to the info), for use in the event of her health getting worse.
Understanding the different types of Adrenal Insufficiency would be helpful too. It can occur with other problems that affect cortisol besides Addison's Disease.
I hope your daughter doesn't become sicker, and that her condition stays stable. I wonder if it would be a good idea to notify the school of her health problems? If she becomes severely stressed this would not be good for her. (I don't have kids so can't guess how schools would react to possible serious health problems in their pupils.)
I have requested the test results now. I took her in because she had been ill on and off for about a month. Chest infection then tummy bug etc and just did it seem to be able to shake things off. She’s pale and has a lot of tummy aches, tired a lot. So the doctor ran bloods.
I will post the test results when I get them. The doc has said about a short synacthen test as her cortisol is low.
Just looking at the NICE guidelines for diagnosing and treating adrenal insufficiency and they’re currently being updated. The final draft (link below) is due to be published in August. There’s a table on page 8 which details what action should happen depending on the blood test result.
For results 150 or below it says to commence treatment and refer to endochronology. Since your daughter’s result was 161 I presume this explains your doctor’s response. I would personally be pushing for an urgent referral to endochronology, given your daughter’s age and the fact that she has a serum cortisol result a mere 11 points of that which would probably be enough to initiate treatment.
This page from the Addison’s charity I shared a link to earlier specifically refers to children and there’s advice for schools. Better to be safe than sorry.
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