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    Old 05-28-2008, 06:19 AM   #16
    Joodles62
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    Re: diagnostic tests advice

    We have had the salivary cortisol tests back.
    8am 16.1 nmol/L (12 - 33)
    Noon 4.0 nmol/L (10 - 28)
    4pm 2.9 nmol/L (6.0 - 11.8)
    Midnight 2.8nmol/L (1.0 - 5.0)

    DHEA Sulphate - daughter 15 years but ranges given for 20 - 24 yr old
    8am 23.1 nmol/L (9 - 29)
    Noon 19.9 nmol/L (6 - 13)
    4pm 15.4 nmol/L (5 - 9)
    Midnight 8.4 nmol/L (3 - 6)

    Secretory IgA 1413.8 ug/ml (102 - 471)

    As you can see the cortisol drops very rapidly although first and last in normal range. Not sure of correct range for 15 year old for DHEA but seems hers doesn't drop appropriately.
    S-IgA (taken at noon) was significatnly above and we don't know what this would mean.
    Any ideas? We did this test privately but our doctors have chosen to ignore it!
    Thanks.

     
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    Old 05-28-2008, 12:29 PM   #17
    rumpled
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    Re: diagnostic tests advice

    A normal body drops from morning throughout the day and her drop at noon is too low. - Other oddities that docs should look for are if she was backwards (low in morning, high at night) or the same throughout the day. Then there are those that drop too low and go too high but have to catch it.

    But the doc is going to dismiss (dang it) one test. And they will look with an evil eye at anything not drawn at their own labs. I am not saying it is right - but heck, I had pathology for my tumor from a major and well known hospital and I had hospitals call the slides and re-test it - talk about trust issues.

    Can you get her to a pediatric center? Have you contacted the magic foundation? Universities with neuro-endocrine programs? NIH (national institutes of health) in the US - maybe there is a clinical trial she fits? It just seems like there has to be a doctor out there - but it is hard when a diagnosis is elusive. I feel for you.

     
    Old 05-31-2008, 01:39 AM   #18
    Joodles62
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    Re: diagnostic tests advice

    Thank you for the suggestions. We have asked our doctors to refer my daughter to a specialist children hospital but they refused. They only suggested physio and CBT! We are going with the physio but were disgusted that they suggested CBT, without looking further into the abnormal tests and looking at the person and not the numbers as you have said.

    We have however found a professional that is happy to see our daughter this week and am hopeful something will come out of that. This person has no connection with the other doctors we have seen.

    Thanks for your help and support.

     
    Old 06-18-2008, 08:53 AM   #19
    Joodles62
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    Re: diagnostic tests advice

    Hello

    We managed to get ACTH tested (it was done properly!)
    My daughter's result was 6 ng/l. The lab who had it done says the reference range for ACTH is 0-40 ng/l. But we have read other things that suggest less than 10 is low? I don't understand how a person with a ACTH of 1 ng/l can be 'normal'. Unfortunately our doctor is on holiday for another ten days so we only have the results and not even his opinion on it!

    Does anyone have any ideas? Thank you

     
    Old 06-18-2008, 03:51 PM   #20
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    Re: diagnostic tests advice

    Just wanted to chime in on the secretory IGA. In the context of a salivary adrenal stress index test, it is usual concerned with gastrointestinal immune function, and usually geared toward evaluating antibodies, such as anti gliadin antibodies - which are produced as a result of intolerance to gliadin, which is a glycoprotein within gluten.

    If this is the purpose of the S IgA in her panel, then your daughter's level is quite high, and if noone else has remarked on it, you may want to pursue a celiac panel (TTG and some other serum blood tests). From my own researching, suspecting I was gluten intolerant (of Irish descent ), I found that there is much in the way of emerging medical lit on the connection between celiac and adrenal disease (esp. addisons is studied in research), as well as other auto-immune/endocrine disorders (thyroid, diabetes, etc).

    Just to let you know too, that there is sometimes some difficulty in diagnosing celiac, which you may already know, but will see on some celiac diagnosis-related sites.

    Definately worth a side-trip into seeking an answer to whether your daughter has celiac or some degree of gluten intolerance.

    Last edited by sparkles916; 06-18-2008 at 04:04 PM.

     
    Old 06-20-2008, 12:28 AM   #21
    Joodles62
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    Re: diagnostic tests advice

    Thanks for this Sparkles, we are going to get a celiac profile done, it is an interesting theory.

    Does anyone have any ideas about the ACTH level of 6 ng/L at 9 am in the morning - The lab who did it says the reference range for ACTH is 0-40 ng/l. But we have read other things that suggest less than 10 is low? I don't understand how a person with a ACTH of 1 ng/l can be 'normal'.

    Thank you

     
    Old 06-20-2008, 06:08 AM   #22
    sparkles916
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    Re: diagnostic tests advice

    I have been trying to find the answer to this question for some time.

    My ACTH is 11 ng/mL, and I was curious to see if I could find in the medical literature available, what the average "norm" is. I have not found the answer as yet.

    I did, however, find the same as you, that some ranges use 10ng/mL as the bottom - apparently this used to be used more frequently here in the US where is it now 5-27. In many of the medical studies I saw using an ACHT range, most from Europe, still used the 10-48 or thereabouts.

    No, it does not make sense that the range used for your daughter goes to zero.

    I have read on other sites dealing with secondary adrenal insufficiency possible hypopituitarism, that the ACTH range is skewed becasue it really reflects the average of already sick people. (as are many less common test ranges).

    I have finally gotten a diagnosis of "partial secondary adrenal insufficiency", which is not commonly recognized by mainstream drs and endos. I am on a trial of hydrocortisone, which I started last week. We will see how it goes.

    Until you find a practitioner who views your daughter's acth as "low normal" and is willing to pursue and TREAT possible secondary AI (looks like partial or "mild" from your daughter's AM cortisol), you are going to get the same answer that everything is "normal".

    Are your drs willing to do the ACTH stim?

     
    Old 06-21-2008, 02:05 AM   #23
    Joodles62
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    Re: diagnostic tests advice

    Thank you for your reply Sparkles.

    I completely agree with what you say about the ACTH, the reference ranges aren't probably based on healthy people.
    We have already had the short synacthen test done. Basal cortisol was 301 and it peaked at 497. The doctor told us this was normal, but we have never been entirely sure as we were under the impression that a normal reading would double.

    I hope you get well on with your trial of hydrocortisone. Could you let us know how you get on with this? We might try to find a doctor who would be willing to do this too. Many thanks

     
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