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Low overall IGG, IGG-1, IGG-3, IGE and secondary hypogonadism

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by imdcout, Aug 31, 2015.

  1. imdcout

    imdcout

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    Hello,


    I've been working with my doctor for the better part of a year to rule out medical conditions that mimic CFS, which is my current overall diagnosis.

    Found lots of great pointers to articles, etc on this forum, and wanted to ask about three consistantly abnormal labs I've had as they relate to CFS.

    Has anyone heard of mild hypogammagloburimia (mid 500's) due to deficiencies in IGG-1 (in 200's), and IGG-3 (in 20's) paired with an IGE of 2 IU/ml (some stuff on google says low IGE can cause issues) and secondary hypogonadism (low testosterone (high 100's / low 200's) with low normal FH / LSH) and borderline low IGF-1 (98) -- testosterone levels respond to Clomid / HCG that boost pituitary stuff..

    Looking to read into CFS like conditions that share these features prior to visiting with immunologist soon about IVIG (would like to avoid if other root cause (and something treatment wise is less involved).
     
  2. minkeygirl

    minkeygirl But I Look So Good.

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    Left Coast
    I don't have my labs in front of me but I have low overall IgG and low subset 1 and 3 and was given a diagnosis of hypogammaglobulinemia. However I also have low IgA which meets the criteria for a dx of CVID. Treatment is IVIG.

    I can't answer about the other things you have going on.


    @Ema might be able to help with this.
     
  3. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    Hello there. I've had this test multiple times, although mine aren't the same results as yours and are borderline low on IgG-1 + 3 and consistently elevated IgG-4. I have heard of other patients with 'low' results though, although not as much as yours. If you have overall low IgG, then that's not normal, and unless you have other symptoms of ME (Autonomic dysfunction, post exertional relapse caused by using body or brain (PEM), arthritis, osteoporosis, seizures, chemical/drug/alcohol sensitivity, chronic pain, muscle tenderness/ weakness, heart problems etc.) I'd see if you can get some treatment first for that,and see if the 'CFS' disappears which hopefully it will.

    First point:
    The benefit of having abnormal IgG subclass evidence is an potential escape from a psych based CFS diagnosis (good). I am yet to hear of 'most' CFS patients with demonstrable immune suppression of a 'classical' nature, e.g. something easily diagnosed, accepted and given a label. However. 'most' patients aren't given these specialist tests so we don't know!

    There are patients who get a dual diagnosis. E.g. CFS + Common variable immune deficiency (CVID). But, that then goes over what the CDC call CFS (fatigue should be unexplained). Still, some patients have other symptoms that go with CFS (neuro and autonomic) and not explained by 'accepted' immune disorders so they keep both diagnosese.

    Still, in my view, if you do have something of that nature, I would question a
    CFS diagnosis and get a diagnosis of an immune disease first. That being said, there's nothing to say you can' have both (Accepted immune disease + CFS).


    Second point:
    Regarding low T as a male and low normal FSH/LH, if possible ask to have a Pituitary gland Stimulation test - there's more than one way to do it. Personally I'd not have a insulin test as this is a bit brutal and can make you feel awful and also can affect the heart and cause seizures in susceptible people.

    A pituitary stimulation test is a somewhat unpleasant procedure if you're really weak to begin with and have severe CFS (9hr fast minimum, then an injection of Glucagon which drops your blood sugar (or at least feels like it!) which can make you throw up and have a nasty headache. It's worth it though if you get a diagnosis of adult Growth Hormone deficiency. GH deficiency mimics lots of symptoms of CFS and can be treated with GH injections which would make you physically stronger.

    Symptoms of Adult Growth Hormone Deficiency:
    Heart failure
    Weak muscles
    Loss of muscle mass
    Poor sleep
    Shortness of breath
    Gynecomastia ('man boobs') and impotence in males (mirrored by low testosterone, elevated estrogen E2).
    Cognitive Dysfunction (key symptom!)
    Anxiety and feelings of being isolated from others
    Weight gain, especially around midriff (mirrored by hypothyroid)
    Elevated lipids (fats)
    Sensitivity to blood sugar dropping (hypoglycemia)
    Osteoporosis


    Lots of other symptoms I've forgotten, but just search them. Tonnes of info out there.

    If you do have low GH on a stim test, make sure they do a pituitary MRI, or have one anyway. Not just a normal head MRI, a pituitary high resolution MRI to rule out an adenoma or a cyst of the pituitary which can make your pituitary hormones go loopy.

    Nearly forgot: IGF-1/IGF-BP3/Prolactin + Cortisol. Check they've all been done if someone's giving your pituitary gland a clean bill of health. Also a vital piece of information, normal IGF-1 does not rule out adult growth hormone deficiency! (IGF-1 is a quick cheap test doctors like to use but it's not fool proof). IGF-1 can also be elevated by estrogen, and yes, men can have that too, especially if they're overweight of have something else than screw with your hormones like Lyme.

    If you have money and ability, consider a 24hr urine cortisol test and collect the urine on a calm day with as little stress as possible. In 'CFS', the cortisol can be low normal, but it shouldn't be markedley low. In CFS the Prolactin can be a bit elevated (even when you're calm - anxiety increases prolactin during blood draws) but again should not be raised significantly, especially on a re-test as that might be a pituitary tumour.

    No one should have elevated prolactin and that's an explanation for a 'CFS' as it makes you much more exhausted as just one symptom. Cortisol baseline should be within range (but will elevate with stress due to anxiety/stress from blod draw). So I'd get a short synacthen test to test your adrenals (if the baseline 9am cortisol is low/low normal) get them to do your cortisol again, this time not to access your adrenal gland, but to rule out secondary hypocortisolemia, which is basically your brain doesn't produce enough cortisol, not a problem with your adrenals (addison's disease). Very few CFS patients know this, or ever are allowed the test, which is a tragedy.

    Measuring cortisol released by the brain 'stress test' can be done at the same time as the stimulation test for growth hormone, during a Glucagon Stimulation Test. There are other tests as well to stimulate for growth hormone too.

    For your brain to switch on cortisol and to see if the HPA Axis is working (which doesn't' work correctly in CFS!): Hypothalamus in the bran releases CRH -> ACTH -> Cortisol. Ideally, see if you can have an 9am ACTH test + Cortisol. Usually ACTH is a pretty specialist test and I think the sample needs freezing if you have to send it off, so it's a bit complex. Most doctors can't be bothered and just test cortisol, but you'd be looking for some opposing results of ACTH vs Cortisol if there's something not working correctly that might be able to have some attempts to be corrected.

    Hope that helps and as you can see CFS has lots of mimics (as you already know), and usually these tests are not performed before a CFS diagnosis is made (bad practice thanks to the CDC and their dumb Fukuda CFS criteria where patients are only given normal exclusionary tests, not specialised inclusion based ones for ME).

    So on that basis, if you do meet the criteria for exclusionary tests and lack other classic 'CFS' symptoms, then I'd tr and get an immune disease diagnosis and wave CFS goodbye ASAP.

    All the best.
     
  4. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    I forgot you can also test for low IgA in secretions as well as blood. That's usually in saliva or stool.
    Low IgA (secretory) = crappy defences against pathogens in the gut, e.g. mucosa. High secretory IgA = you've probably got an active infection. It's an easy test and might explain some symptoms.

    However, I'd stick with blood total immunoglobulins first (total immunogloubulins). IgA, IgG, IgM. This should all be normal in CFS. If it's not, you exceed CFS criteria and don't have CFS, according to the CDC because an immunosupressive state, untreated, would lead to organic chronic fatigue. Same goes for autonomic dysfunction commonly found in ME, which again, is not a test given to people told they have CFS.

    Incredible really, so many people trapped in a CFS diagnosis, never tested, who can't get any help.
    That's why I encourage inquisitive, chronically ill patients to educate themselves medically, as much as possible and I'm sure others on here would agree with me.

    Knowledge is power and with power you get tests. Abnormal tests = possible treatment = possible better quality of life.
     
  5. imdcout

    imdcout

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    Thanks for the very detailed information. I've been trying to follow the abnormal labs tied to symptoms and lots of targeted searches for what mimics CFS. Talking to doctors with a pile of labs, unfiltered, with a less than stellar real time communications ability had not gone well for me in the past. I actually got the initial immune lab done (quantitative immunoglobulins) by paying out of pocket on one of the request a test sites..

    Most of the things you mentioned as CFS related symptoms I have (night sweats, day sweats (heat - excursion related), mixed sleep apnea, getting sick and "brain fog" after trying to be normal, no seizures, but had abnormal EEG showing irritate - epileptogenic lesions, parathenisia in hands and feet, joint - bone pain... Not to give a full history of the last year, but had a significant amount of false leads with lots of tests being normal and diagnosis that was / is not that accepted in medical community (mold / CIRS)..

    Have not been able to get the full endocrine workup with regards to GH stimulation test or Pituitary MRI. You are not the first person who suggested I get this checked. Had GH checked when IFG-1 was at 98. It was < .1 . Prolactin was normal at 8.5. IGF-BP3 was normal, but much higher than IGF-1 ratio wise at 4570 (range 2610-5977). When I tried to get a more thorough workup for GH deficiency, I was referred to a large hospital center. Have not followed up on that yet.

    I did have a 24 hour saliva test for hormones and immune stuff done last year after lots of causes of the symptoms I have were ruled out (integrative med test). It had some abnormal results (low cortisol, low IGA), however I have not shared these as much currently as I'm told the saliva tests are not well established for diagnosis, etc.

    Again, thanks again for all the suggestions. I think it will help me a lot to frame the conversation when I speak to my doctor about the immune labs as related to the pituitary issue and my symptoms which may be CFS, Immune disorder, or endocrine. Having the "brain fog" issue means getting this type of stuff structured in advance to keep me talking at a level I normally was accustomed to vs lots of awkward pauses, "umm's", and missed questions, etc!
     

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