Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Desperate to know what these results mean

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by L_avender, Nov 11, 2014.

  1. L_avender

    L_avender

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    I have just registered today, but I've been reading lots on this forum as it is the best I have found so far. As I already said in my introduction post, I live in the Netherlands and have a 26 year old daughter who is extremely ill, no one seems to know what exactly is wrong with her, but lab results show she has serious problems in many departments.

    She has been ill for nearly nine years. She has seen many specialists, mainstream and alternative, we had extensive lab tests done this year and she takes lots of supplements accordingly. We hoped they would do her some good, but she doesn't get any better at all, in fact they seem to have made her feel worse, or she might have felt even worse without them, don't know...

    Her problems started with psychological stress, and have now ended in adrenal fatigue, problems with her kidneys (jaundice), unbalanced gut flora, PCOS, hair loss, dizzy and sickness, hypoglecemia, chest pain, extreme fatigue, sleep disorder, brain fog, memory loss, sometimes can't finish her sentences as she forgot what she was going to say, low body temperature, severe mental stress she can't cope with and extremely bad OCD (the latter developed over the past year).

    She has not been diagnosed with ME/CFS but reading through the posts I suspect she might qualify. She is currently treated by an alternative specialist but unfortunately we see no improvement, no matter what we try. In fact my daughter is getting worse by the day and I wonder if anyone could take a look at this substantial list of abnormal lab results and share their views with me. She had two major tests done, one in January and one in June this year. The June results have been taken after supplementation. Iodine drops, Q10, and a whole lot more.

    January 2014:
    BIOCHEMISTRY

    SATURATED FATS
    Lauric Acid +52 (2,3-25,2 µmol/l)
    Arachidic Acid +30 (8,7 – 29,2 µmol /l)
    L-CARNITINE
    free carnitine - 25,0 (32,0 - 60,0 µmol/L)
    acylcarnitine + 16,0 (6,0 - 15,0 µmol/L)
    acyl/total ratio + 0,39 (0,12 - 0,30)

    ORTHOMOLECULAR TEST
    Coenzyme Q10 - 519 (869 - 1158 nmol/l)

    SEROLOGY FUNGI/YEASTS
    Aspergillus spp IgG + >200,0 (< 37,0 mg/l)

    HORMONOLOGY-BLOOD
    Androgenes
    Testosterone + 6,25 (0,35 - 2,10 nmol/l)
    Sex hormone bind. glob. - 24 (35 - 140 nmol/l)
    Free testosterone + 142,3 (3,4 - 27,7 pmol/l)
    Free testosterone-index + 25,7 (0,4 - 4,5 index procent)
    Bioavailable Testosterone + 3297 (69 - 694 pmol/L)

    METALS ON PLASMA / SERUM
    Arseen - 0,0028 (0,0067 - 0,1255 µmol/L)

    HORMONOLOGY-URINE
    Iodine (total) - 3,5 (10,0 - 30,0 µg/dl)
    17-steroid fractionate
    Androsteron (A) + 17,1 (2,3 - 9,7 µmol/24 uur)
    11-keto-etiocholanolone + 3,3 (0,3 - 1,8 µmol/24 uur)
    11-OH-androsterone + 10,3 (1,3 - 4,8 µmol/24 uur)
    E/A - 0,37 (0,7 - 1,9)
    17-Keto's (calculated) + 39,85 (9,9 - 30,6 µmol/24 uur)
    allo-THF (aTHF) + 9,2 (1,1 - 5,6 µmol/24 )
    17-OH's (calculated) + 25,5 (10,2 - 23,6 µmol/24 uur)

    INFLAMMATION-RHEUMATHISM
    CRP sensitive + 2.18 (0-0.55 mg/L)

    ANTIOXIDANT PROFILE
    Bèta-Carotene + 1739 (75-500 ng/ml)
    Selenium - 77 (90-143 µg/L)

    THYROID ANTIBODIES
    Free cortisol (8u) - 4.2 (10-30 ng/mL)
    IGF Binding protein 3 + 6.45 (2.96-4.96 mg/L)
    IGFBP-3/IGF1 + 8.10 (0-4.5 mol/mol)

    TEST SALIVA
    Cortisol 08h - 1.6 (11.0-24.0 nmol/L)

    ENDOCRINOLOGY IN URINE
    Aldosteron + 21.7 (5.0-20 µg/24u)
    Dopamine -129,0 (137-338 µg/g creat)
    2/16 OH-estrone -1.0 (>1.5)

    ORGANIC METABOLITES URINE
    Bacterial module
    2-OH-Phenylacetate +0.57 (mmol/cr <0.43)
    4-OH-Phenylacetate +14.39 (mmol/cr <13.8 )
    4-OH-Phenyllactate +0.42 (mmol/cr <0.41)
    Tricarballylate +0.24 (mmol/cr <0.2)
    Hydrocaffeate +0.17 (mmol/cr <0.13)

    INTESTINAL FLORA/FUNGI ETC.
    Resident flora
    Escherichia coli 10^4 (10^6 – 10^7)
    Enterococcus sp. 10^4 (10^6 – 10^7
    Bifidobacterium sp. 10^7 (10^9)
    Bacteroides sp. 10^7 (10^9)
    Lactobacillus sp. 10^3 (10^5 – 10^7)
    Transient flora
    Enterobacteriaceae group 2 10^4 (<10^4)

    DYSBIOSIS FACTOR
    Dysbiosis 4 (<1)

    VIRULENCE FACTORS
    Catalase 1 (0)
    Urease 1 (0)
    Gelatinase 1 (0)

    ENDOCRINOLOGY IN URINE
    Metabolism van de estrogens
    2 OH-estrone 20.3 ng/mL
    16 alpha-OH-estrone 19.8 ng/mL
    2/16 OH-estrone 1.0 (>1.5)

    ENDOCRINOLOGY IN URINE
    T3 691 (800 - 1800 pmol/24u)
    T3/T4 ratio 0.36 (0.63 - 1.00 ratio)


    TEST JUNE JULY 2014:
    AMINO ACIDS IN 24-HOUR URINE
    ESSENTIEL AMINO ACIDS -
    Isoleucine 52 (5 - 33 μmol/24hr)

    PROTEIN AMINO ACIDS
    Aspartic acid 275 (29 - 149 μmol/24hr)
    Serine 619 (132 - 580 μmol/24u)

    METABOLIC AMINO ACIDS
    Taurine 1631 (220 - 1292 μmol/24u)
    Fosfoethanolamine 87 (19 - 55 μmol/24u)
    α-Aminoadipinezuur 60 (9 - 51 μmol/24u)
    α-Aminoboterzuur 9 (11 - 35 μmol/24u)
    ß-Aminoisoboterzuur 227 (0 - 208 μmol/24u)
    Homocystine 7 (0 - 4 μmol/24u)
    Ethanolamine 480 (146 - 352 μmol/24u)
    1-Methylhistidine 136 (128 - 392 μmol/24u)

    ESSENTIAL ELEMENTS PER 24 HOUR
    Sodium 3455 (1380 - 2362 mg/24u)
    Zinc 0.09 (0.50 - 1.50 mg/24u)
    Manganese <0.1 (1.00 - 6.00 μg/24u)
    Lithium 27.6 (50.0 - 155.0 μg/24u)
    Vanadium 0.2 (6.0 - 46.0μg/24u)

    TOXIC ELEMENTS PER 24 HR
    NUCLEOSIDE
    Adenosine 24.8 (16.8 - 21.4 10^-8 M)

    ELEMENTS HAIR
    Mangane <0.1 (0.15 - 2.30 ppm)
    Chromium <0.1 (0.15 - 1.40 ppm)
    Sodium 15 (18 - 90 ppm)
    Potassium 1 (15 - 45 ppm)
    Vanadium 8 (9 - 80 ppb)
    Molybdenum 0.01 (0.05 - 0.15 ppm)
    Iodine 0.6 (2.5 - 13.0 ppm)

    TOXISCHE ELEMENTEN RATIO\'S
    Calcium/Magnesium 40.1 (5.0 - 18.0 ratio)
    Zinc/Coper 6.0 (4.0 - 10.0 ratio)
    Zinc/Cadmium >2000 (>= 400 ratio)

    METABOLITES
    S-Adenosylmethionine (RBC) 216 (221 - 256 nmol/dl)
    S-Adenosylhomocysteine (RBC) 53.7 (38.0 - 49.0 nmol/dl)

    FOLIC ACID METABOL. (plasma)
    THF 0.48 (0.60 - 6.80 nmol/l)
    Folic Acid 8.0 (9.0 - 35.5 nmol/l)
    Folic Acid, active (RBC) 346 (400 - 1500 nmol/l)

    HEMATOLOGY
    MCV 83 (87 - 98 fl)
    Bilirubine direct 7.7 (0.0 - 4.0 μmol/l)
    ALT (ALAT/SGPT) 37 (0 - 30 U/l)
    1) CRP-HS <0.2 (0.00 - 1.00 mg/l)

    LIPID METABOLISM PROTEINS
    Ureum 3.2 (3.0 - 7.0 mmol/l)

    DIVERSE CHEMIE
    Malondialdehyde 1.34 (< 1.75 μmol/l)

    AMINO ACID IN PLASMA
    Glutathion (oxidated) 0.53 (0.16 - 0.50 μmol/l)
    Glutathion (reduced) 3.4 (3.8 - 5.5 μmol/l)

    VITAMINS
    Vitamin A 59 (63 - 115 μg/100ml)
    Totaal-caroteen 557 (187 - 407 μg/100ml)
    Vitamin B2 (Riboflavine) 232 (300 - 700 μg/l)
    Vitamine B6 act. (P-5-P) 96.7 (12.0 - 30.0 μg/l)
    Totaal Choline 416 (260 - 350 mg/l)
    Acyl Carnitine 2.9 (0.9 - 2.3 mg/l)
    Coenzym Q10 2.1 (0.6 - 1.2 mg/l)
    Vitamin D3 (25OH) 32.0 (32.8 - 86.8 μg/l)

    VITAMINS (different units)
    Vitamin A 2.0 (2.2 - 4.0 μmol/l)
    Total carotene 10.4 (3.5 - 7.6 μmol/l)
    Vitamin B2 (Riboflavine) 616 (797 - 186 nmol/l)
    Vitamin B6 act. (P-5-P) 391 (49 - 121 nmol/l)
    Acylcarnitine 18.0 (5.6 - 14.3 μmol/l)
    Vitamin K1 296 (400 - 1200 ng/l)
    Vitamin D3 (25OH) 80.1 (82.0 - 217.0 nmol/l)

    STOOL TEST:
    DIGESTION
    pH - 7 (6.0 - 6.8 )
    Starch fibers - many (ref. none)
    Fat content - 7 (< 4 gr/100 gr)

    IMMUNOLOGY, INFECTION- AND INFLAMATION MARKERS
    secretorY IgA 188 (300 - 2040 μg/ml)
    IgA anti-t-Transglutaminase 126 (<=100 U/l)

    I'm sorry the list is so long and probably confusing but I hope someone might see some kind of coherence and advice us what we are up against here.
     
    Last edited: Nov 13, 2014
    justy likes this.
  2. Valentijn

    Valentijn Senior Member

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    @L_avender - Has she tried a completely gluten-free diet? IgA anti-transgluaminase can indicate Celiac disease, which could some very serious problems with absorption of vitamins, minerals, etc.
     
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  3. L_avender

    L_avender

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    Yes she has been on a gluten free diet for about six months now. No improvement at all.
     
  4. Sidereal

    Sidereal Senior Member

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    I gather from her MCV that she's been supplementing B12/folate? Could you post what she's taking? Unfortunately, sometimes supplements make matters even worse, especially when one is in a severe ME/CFS state.
     
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  5. chipmunk1

    chipmunk1 Senior Member

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    did you try taking high dose probiotics over a period of several months?
     
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  6. halcyon

    halcyon Senior Member

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    Adrenal fatigue is a bit of a vague term and isn't really recognized as a real thing in mainstream medicine. Adrenal insufficiency, however, is a real thing and it looks like your daughter has low cortisol which can be a sign of adrenal insufficiency. It's not the full story though. Just because the adrenal glands aren't putting out enough cortisol doesn't mean that they are broken. They are stimulated to release cortisol by the pituitary which is in turn stimulated by the hypothalamus. To get the full picture you have to look at ACTH as well as CRH and perform an ACTH stimulation test. The fact that her aldosterone is high is a good sign that her adrenal glands aren't totally trashed. Low cortisol could possibly explain the hypoglycemia.

    It looks like she could possibly be hypothyroid but I only see T3 listed in the tests above. Has she had TSH and T4 measured as well?

    Both problems should be easily diagnosed by an endocrinologist and are relatively treatable with medication.

    You mentioned jaundice and I see her billirubin is elevated a good amount, with a slight increase in liver enzymes. Has she been checked for liver disease? I don't believe any kidney issues would lead to jaundice unless it was something like hemolytic-uremic syndrome. Has she been checked for different types of anemia as well?

    I'm sorry that she has been sick for so long. I hope you can get to the bottom of some of these abnormalities and get some treatment.
     
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  7. AkeBono

    AkeBono

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    Lavender very sorry for her and for you suffering for her.

    IMO you should look deeper to infectious causes. Many of the results showed very high inflammation. All the others are just results of the core cause. Please check also aspergillus ig which seems elevated. High androgen in a women usually related with chronic ibflammation.

    Too much supplements are not ok in my experience and iodine definitively is a big no with adrenal fatigue. What did they tell about microbial byproducts which are elevated also. T3 low is because disbiosus and impaired liver.
     
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  8. Sea

    Sea Senior Member

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    The abnormal results in the saturated fats labs point possibly to a fatty acid oxidation disorder. Your daughter would need a more complete acylcarnitine profile to clarify which one and possibly genetic testing as well. Hypoglycemia is a common event when untreated for this. These disorders are a result of lower or missing enzyme function in the processing and utilising for energy of various length fatty acids. The fatty acids which cannot be utilised build up and cause damage to liver and muscle.

    Depending on which variety it is treatment is often a relatively strict diet and possibly supplementation of prescription carnitine.

    Fatty acid oxidation disorders can present with different levels of severity ranging from death in infancy to being quite mild. Some do remain undetected until adulthood, so don't rule it out just by reading about the very severely affected ones.

    This is probably not the whole answer for your daughter's health but could be a significant part.
     
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  9. Martial

    Martial Senior Member

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    Ventura, CA
    She definitely seems to have some kind of infectious process that is ongoing. I see a lot of tests for vitamins and minerals, however has she ever been tested to see what kind of bacteria, viruses, parasites, or fungus could be at play? If there is an infectious nature to her illness it is no wonder none of the other approaches would have helped as much. This would require more specialized treatment targeting whatever infectious cause could be at place.
     
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  10. Sea

    Sea Senior Member

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    Not necessarily, a low MCV is usually an indication of anemia associated with low iron (which fits with this young lady's overall picture of low vitamin status - probably malabsorption) or chronic illness. Her folate level is also low.
     
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  11. Sidereal

    Sidereal Senior Member

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    You're right. I still think it's worth taking a look at the supplements to see if they're not complicating the picture.
     
  12. Sea

    Sea Senior Member

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    It can take up to 12 months for intestinal damage from gluten to repair and begin to absorb nutrients properly again. Also, many people who thought they were gluten free find on further investigation that there has been some small overlooked source of gluten in their diet and this has been enough to prevent healing. Some foods which we expect to be gluten free (for example rice flour) can be cross contaminated with gluten through poor handling and storage in shops which sell both gluten and gluten free products.
     
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  13. L_avender

    L_avender

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    Thank you for the replies, I will respond in the morning (it's bed time here) to all of your reactions.
     
  14. dan062

    dan062 Senior Member

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    @L_avender Can I ask you where you got these labs done? If you're concerned about your daughter (and I agree that you should be) it may be better working within the conventional medicine paradigm if you also want treatment from them -- I'm pretty sure they won't recognize testing like 'dysbiosis factor' and hair elements (please don't take offence - I may be wrong in this assumption and where you got the tests from).

    I think the thing with lab results is that minor elevations are often of little to no significance. I'm not sure whether too much should be made of the minor raises in the liver enzymes as these could be due to whatever primary process is at play, or simply incidental findings.

    I agree with @halcyon that the cortisol level is probably the most interesting finding in the above, particularly as an endocrine disturbance of some sort seems to fit the general clinical picture you describe.

    Perhaps you can bring these results to the attention of an endocrinologist and follow up with ACTH testing, etc.
     
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  15. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Can I ask you where these tests were done? The pattern is peculiar in a number of respects which makes me wonder about the quality control.
     
  16. Kati

    Kati Patient in training

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    Hi @L_avender From my nursing perspective, here is what's striking me.

    If your daughter is jaundiced, it's her liver that's not good and not her kidneys. It would be crucial that she gets the investigation in that regards. You provided only ALT results, but there are more tests that could be done, like ALT, GGT and alkaline phosphatase. If she is visibly jaundiced and the white of her eyes is yellow, a liver ultrasound at the very minimum needs to be performed. If she is jaundiced, great care needs to be taken not to worsen her condition by ingesting supplements, which can worsen her state.

    Secondly, aspergillus (fungal) in the blood is serious and should be treated medically. Again it is important to check in with a physician.

    Best wishes.
     
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  17. bertiedog

    bertiedog Senior Member

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    @L_avender Have you considered a trial of Low Dose Naltrexone for your daughter, starting very low? It really helps me but it took about a month for me to notice this.

    Has your doctor consulted with a trained Endo to check out the adrenal situation?

    I do hope you find an answer to her problems.

    Pam
     
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  18. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I now see that dan062 had the same thought. Before we get a whole lot of suggestions from PR members can I just say that as they stand these results do not look real. If some of them are then they should have been sorted out by the specialists already seen. As it is the list does not make sense to me. I think it is important to know where they were done.
     
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  19. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I know that you are not in theory 'giving advice' Pam but we do not have the faintest idea what is wrong here so I think we do need to be very cautious about making suggestions. I wouldn't dream of suggesting a prescription medication until I had some idea of the diagnosis.
     
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  20. L_avender

    L_avender

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    Just a quick reply before I go:

    The January tests were done by AML in Antwerp - Belgium and by RP Medical laboratory Roman Pais in Nijvel – Belgium, a reputable lab over here in Europe. Executed by Dr Mussarella, a well known alternative hormone specialist in the Netherlands, but not on the right track as far as my daughter is concerned.

    Than we changed specialists.


    The mineral hair analysis I have to look up, can’t remember.


    The June results apart from the hair analysis – ELN - European Laboratory of Nutrients in Bunnik, the Netherlands


    The stool samples June 2014 MGlab –Leeuwarden - the Netherlands – Lab for microbiology and gen technology.


    List of supplements I will post tomorrow. Also I will of course reply to all of your comments, thank you so much!
     

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