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  • How many tests should you have?

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    Old 03-11-2010, 11:55 AM   #1
    sochar
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    How many tests should you have?

    Hi, I got the dreaded chronic fatigue syndrome diagnosis the other day but I'm really worried they are missing something. I started getting ill about 4 years ago, it started with severe stomach aches, extreme bloating and diarrhea. I went to the doctors and they just told me it was IBS... no meds ever helped. I then started getting tired all the time, sleep didn't seem to refresh me. Numerous other symptoms appeared including rashes, eczema, very dry skin (especially on scalp), hair falling out, feeling cold (with Raynaud's Syndrome).

    I had a few tests to rule out things such as celiac, anaemia, diabetes but they came back normal. I decided to go on the anti-candida diet as I'd had recurring yeast infections (no sugar, slow releasing carbs, no yeast, no wheat, no milk) and it seems to have solved my stomach issues. No more daily painful stomach issues BUT my fatigue has slowly been worsening.

    I'm getting so worried because I'm not sure how much longer I can continue working. I experience overwhelming fatigue from the moment I wake up until I go to bed... occasionally I'll have half an hour or so of feeling almost normal. My muscles are starting to ache, especially my back, neck and legs. I have headaches every single day, I feel sick every day to the point where I run to the toilet but have yet to be sick. My eyes are extremely dry and always bloodshot & puffy with big purple bags that never go. I'm still losing hair and have very dry scalp and skin. I feel faint when I stand up after being sat down. My blood pressure when taken anywhere is pretty low (88/55 - 94/68) however at the doctors it comes up very high because I get nervous when I'm there!! My body temperature ranges from about 35.3-36.5 celcius. I seem to have started getting a strange pain in my lower abdomen when I need to urinate and this wakes me up some mornings.

    I ordered an adrenal saliva test and it showed that my cortisol levels are lower than the reference range all day. I showed this to my doctor and he did another blood test. They all came back normal so this is how he came to the CFS diagnosis. I asked for a print out of these tests and he's barely done any, only full blood count, urea and electrolytes, differential white blood cell count, serum cortisol, serum TSH. Do you think these are enough tests? I really think that they are missing something because I seem to be getting worse every day! Can you recommend any tests that I should ask for? I have lots of autoimmune diseases in my family.

    Thanks, and so sorry for the long post!!

    Last edited by sochar; 03-11-2010 at 12:02 PM.

     
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    Old 03-22-2010, 08:30 AM   #2
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    Re: How many tests should you have?

    I have similar issues...I have CFIDS and now I have learned I have adrenal fatigue...look for a book online by dr. james wilson and for his site. if your cortisol levels are low in the morning then you probably have it...the worst case scenario is full-blown addison's disease but that is rare compared to how many people have partial adrenal insufficiency. Also, thyroid problems and CFS FM ME apparently go hand-in-hand with adrenal problems...supposedly, stress and other factors weaken the adrenals which opens you up to more health problems such as CFS.

    Last edited by hb-mod; 03-23-2010 at 05:30 AM. Reason: Removed Quote of immediately preceding post. Please use "Quick" Reply rather than "Quote" Reply. Thanks!

     
    Old 04-02-2010, 12:22 PM   #3
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    Re: How many tests should you have?

    A few things you said stood out to me...eczema...rashes...muscle aches.

    Have they done labs and do you know the results? If they have and you have the results...great. If not, call and request copies.

     
    Old 04-02-2010, 02:13 PM   #4
    sochar
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    Re: How many tests should you have?

    Hey yep, I have the results here. I don't see anything abnormal but I really think there are other tests I should have. Would be very grateful for any sort of help!

    Full Blood Count Mar 2010
    Haemoglobin concentration 15.6 (11.5-16.5)
    Total White Blood Count 6.1 10*9/L (4.0-11.00)
    Platelet Count 255 10*9/L (150-450)
    Red Blood cell count [B]5.11 10*12/L (3.5-5.8)
    Haematocrit 0.467 1/1 (0.37-0.47)
    Mean cell volume 91fl (84.0-102)
    Mean cell haemoglobin level 30.5 pg (28.0-33.0)
    Mean cell haemoglobin concentration 33.4 g/dL

    Urea and Electrolytes Mar 2010
    Serum sodium level 144 mmol/L (134-145)
    Serum potassium level 4.8 mmol/L (3.5-5.3)
    Serum urea level 4.7 mmol/L (2.9-7.5)
    Serum creatine level 63 umol/L (55.0-100.0)

    Differential White blood cell count Mar 2010
    Neutrophil count 3.5 10*9/L (2.0-7.5)
    Lymphocyte Count 2.1 10*9/L (1.0-4.0)
    Monocyte count 0.4 10*9/L (0.1-1.5)
    Eosinophil Count 0.2 10*9/L (0.04-0.4)
    Basophil count 0.0 10*9/L (0.0-0.15)

    Serum cortisol level
    494 nmol/L (140-690) 11.30am Mar 2010

    Serum TSH level
    2.0 mu/L (0.3-5.5) Mar 2010
    2.9 mu/L (0.3-5.5) May 2008

    GFR calculated abbreviated MDRD
    >90 ml/min Mar 2010
    86 ml/min Nov 2009
    76 ml/min May 2008

    Serum vitamin b12 level Nov 2009
    B12 241 ng/L (190-800)
    folate 12.3 ug/L (3.9-14.0)
    ferritin 29 ug/L (12.0-300.0)
    blood glucose 3.8 mmol/L (3.0-6.0)

    Last edited by sochar; 04-02-2010 at 02:20 PM.

     
    Old 04-02-2010, 02:34 PM   #5
    CDS75
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    Re: How many tests should you have?

    Any testing for Autoimmune diseases? RF, ANA, Autoantibodies tests?

    Immunology/serology tests?

    Anion Gap, D-Dimer?

    Proteins? liver enzymes? CPK, LDH, LDH isoenzymes?

    Urinalysis?

    Hemoglobin A1c?

    Viral...lyme, EBV, etc?

    24 hr urine...protein, gluten sensitivity,...

    Last edited by CDS75; 04-02-2010 at 02:35 PM.

     
    Old 04-02-2010, 02:55 PM   #6
    sochar
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    Re: How many tests should you have?

    Ah yes I forgot to add my liver function tests and coeliac tests. Have had these twice and all normal. These are the only tests they've given me. I had the ESR test a couple of years ago which was fine but this was when IBS was my main problem, am feeling much worse now.

    I do have a family history of autoimmune diseases, should I request ANA and RF tests?

    Thanks for helping!

     
    Old 04-02-2010, 03:16 PM   #7
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    Re: How many tests should you have?

    Absolutely! I can't believe they haven't done them already.

    ESR changes. You will need to have that done again.

     
    Old 04-02-2010, 03:26 PM   #8
    sochar
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    Re: How many tests should you have?

    I know, the doctors I've seen are not very helpful! They told me it was CFS and offered me no help, just told me to research it! I shall get them to do these tests, or make them refer me to someone who will.

    Thanks again for your help!

     
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