The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Mysterious health "event"

Discussion in 'General Symptoms' started by DownTheRabbitHole, Dec 4, 2016.

  1. DownTheRabbitHole


    I'm a 37 year old male. Three years ago I had something happen that I've only been able to call the "event".

    It's happened once each year since and still remains a mystery. So far no doctors or specialists I've seen have been able it diagnose it, but at least one friend with Lupus says it sounds like I had a Lupus flare up.

    Any help in pinpointing what is going on with my crazy list of diverse symptoms would be hugely appreciated.

    Immuno labs for ANA for showed 1:160 on IIF (positive) but 14 units on ELISA (negative). Not sure what to make of the mixed results. However, all Tier 1 SLE Assay results were negative.

    Other that a hyperactive vagus nerve, no other tests indicate anything out of the ordinary.

    My symptoms that coincide with the "event":
    - Body temperature drops to about 93 degrees F for first few nights then hovers between 94 and 97 for several months after. Since the first event, my temp has not risen past 97.7 when previously it used to be a normal 98.6.
    - Fingers and toes generally cold and finger pads are chronically wrinkled like they are lacking bloodflow. Have been told that part looks like I've developed Raynaud's. Before the event, you could see heat coming up off my hands I was so hot blooded. Now I hold hot coffee cups like I'm about to freeze while everyone else puts on shorts.
    - Hair falls out uniformly on both calves starting on outer edge of each. (weirdest symptom)
    - Hair on my head becomes brittle and thins out.
    - Muscles become extremely fatigued with even the most basic task.
    - Joints are very fragile. Walking across the room can be excruciating. Picked up a gallon of milk the day after the first event and it was sufficiently heavy to nearly pull my shoulder out of socket.
    - Chronic dull headache, brain fog and difficulty with memory.
    - Free testosterone profile fell from a healthy +700 ng/Dl range to a deficient 307 ng/Dl (my libido similarly fell thru the floor).
    - Anecdotally, people said I looked like I aged very rapidly that first year it happened. Went from no gray hair to salt 'n pepper within 3 months of first event.

    The "event" seems to coincide with high stress and heavy caffeine usage to keep going. I also get mad cravings for simple carbs (especially sugary foods), whereas before the event I rarely ate anything but complex slow carbs.

    This has happened a total of 3 times to varying degrees of severity. I'd like to figure out what is going on so I can fix it at the source.

    Any ideas? :/
  2. Bead Dog

    Bead Dog

    Thyroid? B vitamin deficiencies? Lupus? Just a few ideas.
  3. DownTheRabbitHole


    Thyroid profile is normal. I take a methylated B vitamin complex and SpectraCell micronutrient analysis shows those are all where they should be.

    No idea about the lupus connection, which is something I'm curious about. The immuno lab work suggests I don't have it, but inconclusive.
  4. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

    Toronto, Canada
    After I got sick with ME my core body temperature dropped and I experienced the pain that accompanies cold, especially hands and feet - my thyroid tests came back in the normal range - a little bit of research showed that the accuracy of thyroid tests to indicate hypothyroid are in question - I convinced by doc to prescribe synthroid - it raised my core temperature from 96.1 to 96.6 (I'm on 75mcg) but went no further in spite of increasing the dose way past the current - although still sensitive to the cold, I'm not nearly as bad as pre-synthroid.
    MastBCrazy likes this.
  5. Tammy

    Tammy Senior Member

    New Mexico
    Almost sounds like adrenaline storms/rushes. Too much adrenaline is like poison to the body.
  6. skwag

    skwag Senior Member

    The mad carb cravings suggest you might have some blood sugar issues. Have you done any lab or home glucose testing?
  7. anciendaze

    anciendaze Senior Member

    Those cravings could also be evidence of anaerobic metabolism, which uses glucose in an inefficient way.
    MastBCrazy likes this.
  8. Cohen2

    Cohen2 Senior Member

    New Zealand
    I'm no doctor so take this with a grain of salt. The immunofluorscence ANA titer could be indicative of another autoimmune process not just lupus. So you could pursue that line.

    Have you had cortisol and other hormones apart from free testosterone checked? adrenal insufficiency is another possibility

    Do you have an Me/cfs diagnosis?

    And where do I find a doctor like yours? seems to be willing to investigate more than most
  9. taniaaust1

    taniaaust1 Senior Member

    Sth Australia
    I'd wonder about a vitamin or mineral deficiency seeing your hair gets brittle and starts to thin. Of cause a vitamin or mineral deficiency can affect the whole body in various ways

    " When a person is stressed, ones body uses up more of some vitamins eg B vitamin group. describes 16 various vitamin and mineral deficiencies do to the hair. for example

    I suggest to click the link and read through the affects of each one on hair and then further investigate those vitamins/minerals to figure it out.
  10. caledonia


    Cincinnati, OH, USA
    Whatever it is, there seems to be some thyroid and adrenal involvement. is a great resource for both.

    You need a complete thyroid panel, not just TSH (not sure what your profile included).
    MastBCrazy likes this.

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