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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Finally a bad test result!!

Discussion in 'General ME/CFS Discussion' started by notmyself, Feb 25, 2017.

  1. notmyself

    notmyself Senior Member

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    HI everyone!!


    After making all the possible tests that i could think off..and all coming back normal..i finally get an abnormal result,..Probably most of you know more about medicine than me..I make a vitamin D test and ..the normal range is beetween 30-100 ..and i have 16 .is defiantely a deficiency..Can a lack of vit D mimic the symptoms of CFS??..i have the horrible fatigue,trouble sleeping ,brain fog and muscle twitching..i also feel bad the next days after exercise..Can lack of D vitamin really cause so much trouble??..i read that it can but i find it a little bit hard to belive..specially because my calcium levels were normal..What do you think?
     
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  2. ebethc

    ebethc Senior Member

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    I had super low Vitamin D and taking high dose, rx vitamin d made me feel much better BUT not well... It was like when you have the flu and you wake up dehydrated and drink a big glass of water... You feel so much better but you still have the flu...

    that said, you could have a vitamin d deficiency, take vitamin d, and be "cured" however, you would NOT be cured of cfs b/c you never had it in the first place; you had a vitamin d deficiency

    vitamin d deficiency does not equal cfs.... please get that out of your head.... I don't tell ppl that I have cfs b/c there's always some idiot who says, Oh, my cousin (or whatever) had that last summer.. She just went on a juice cleanse and it cured her chronic fatigue! ... ugh... please don't screw us over by confusing your vitamin d deficiency w cfs and spreading misinformation.

    if you truly have cfs, then best of luck and see you around the board.

    next step: see Hip's CFS roadmap for testing & tx
     
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  3. Dainty

    Dainty Senior Member

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    Congrats on your bad test result! lol

    I think my vitamin D once tested as "less than 7", it really freaked the doctor out. Unfortunately I'm intolerant to vitamin D supplementation. It causes me severe, intractable pain.

    I got bedridden by CFS back when my D levels were more normal, but once I was unable to tolerate daylight/sunlight or eating anything with vitamin D it made my D levels plummet. We poured thousands of dollars into trying to find a D supplement I could take without intolerable symptoms, to no avail.

    I personally doubt that bringing your vitamin D levels up would cure you, but if it does - great! I suspect your doctor has told you this is THE reason, which, when I hear that I've learned to just play along while internally rolling my eyes. I'll take anything I can tolerate that they want me to take, and several months down the line when they discover for themselves that is is not the end all be all cure for me then we can actually talk again.

    This kind of thing can bring about small amounts of improvement, however, and it's often by grabbing at every inch of improvement we can find - wherever we can find it - that we end up with some relief. So, even if it's not "the" answer, I still say go for it! See how far it can take you. :)
     
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  4. Kati

    Kati Patient in training

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    @notmyself congratulations on the bad test results and welcome to the forums. :cool:
     
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  5. antherder

    antherder a.k.a. Princess Dauer, Nematode Nation

    Hi @notmyself, welcome from me too.

    My vit d is low as well, but the high dose pills my doctor prescribed made my GI trouble worse. There are quite a few Vitamin D threads on this forum so it's worth reading those. Some people do benefit from taking it, others not so much. One of those tricky supplements, as always.
     
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  6. Basilico

    Basilico Florida

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    Isn't is amazing how exciting an abnormal test result can be! It's like vindication that there actually is something wrong, and a potential clue for how to fix it.

    Vitamin D is a little tricky. Did you have only 0.25 tested, or also 1.25 (the active form)? Only asking, because most doctors inexplicably only test 0.25 when they should be testing 1.25. For example, my 0.25 is always on the low end, but 2 years ago I decided to test my 1.25 Vit D and it was 3 TIMES the upper limit. For awhile I was worried that I had sarcoidosis. Since then it's normalized, and no doc has been able to explain what that was about. Had I been supplementing with Vit D just because the 0.25 was low, it actually might have been counterproductive since I actually had way too much in my system already. In fact, my new neurologist wants me to take Vit D because my 0.25 is low and I have to figure out a way to explain why this is not a good idea while avoiding sounding like I know more than her (a delicate dance that many with CFS must learn to master).

    Sorry to throw you a monkey wrench!

    While low Vit D may not be the cause or cure, raising it MAY help. It helps some people and not others. No way to find out until you try! CFS is largely a N=1 endeavor.
     
  7. xrayspex

    xrayspex Senior Member

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    u.s.a.
    Dainty I am in same boat, I get intolerable symptoms really quickly on any form and dose of D that I have tried over the last 7ish years when became intolerant to it. These are my values the last 2 times I was tested, not quite a year apart. I can't spend much time in the sun unless its below 5o degrees in fall or winter its sometimes safe for awhile but even that can cause a brain fog backlash a little later. Fish foods can also bring on bad side effects. I plan on trying a lamp but some have pointed out that my body might interpret tht like sun or supplements but worth a shot. I do think there is probably a reason that my body doesnt want D but I also think it is likely partof reason that I have joint pain and getting cracked tooth syndrome more often with aging etc. Sort of a catch 22...I wish I understood why.
    but hey Myself---I hope you can supplement and see how you fare!

    first to last blood tests last year:
    Vitamin D3, 25-Hydroxy 10 ng/mL ng/mL
    Vitamin D2, 25-Hydroxy 8 ng/mL ng/mL
    Vitamin D, 25-Hydroxy 18 ng/mL 30 - 80 ng/mL
    Component Your Value Standard Range
    Vitamin D3, 25-Hydroxy 7 ng/mL ng/mL
    Vitamin D2, 25-Hydroxy 10 ng/mL ng/mL
    Vitamin D, 25-Hydroxy 17 ng/mL 30 - 80 ng/mL
     
  8. TigerLilea

    TigerLilea Senior Member

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    I've never heard of the symptoms of low Vitamin D mimicing CFS/ME. I am on the high end of 25(OH)D and it certainly hasn't helped my CFS/ME at all.
     
  9. Shoshana

    Shoshana Northern USA

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    @notmyself

    It is definitely good to take the vitamin d, and hope you tolerate it.

    It might help. You will not know how much OR how little
    the difference will be. Until you try it for a while.


    But great to get a test result! ;)

    And worth trying that. And hoping for some improvement.


    It doesn't help me, but I take it anyway, to keep my number from going toward zero.


    Just thinking, maybe the illness causes our vit d to go down? Some of us.?
    Instead of the other way around?
    Maybe it is "just" one of the symptoms????


    @Dainty
    I am sorry you tried to find, but could not find any you could take.
    That is awful. So difficult for you.


    Shoshana
     
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  10. kangaSue

    kangaSue Senior Member

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    I don't have ME/CFS but I don't tolerate oral vitamin D (pretty much all oral vitamins actually) because they cause severe abdominal pain and GI upset but had to do something about it recently with being diagnosed with Osteoporosis so bit the bullet and tried this https://www.mja.com.au/journal/2005...-megadose-cholecalciferol-treatment-vitamin-d an injection of a megadose of Vit D which, to my surprise, I had no issue with at all.

    I went that route from previously seeing this study http://www.healio.com/rheumatology/...loskeletal-pain-in-patients-with-fibromyalgia which found a smaller megadose of Vit D as cholecalciferol could help with fatigue and pain in Fibromyalgia too
     
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  11. TigerLilea

    TigerLilea Senior Member

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    A lot of people have low Vitamin D. It has nothing to do with having CFS/ME or causing it. If you don't get enough sun, always wear sunscreen, you have dark skin, don't take supplements, don't drink fortified milk, or are getting up there in the years, your Vitamin D levels will tend to be on the low side if you don't supplement with Vitamin D3.
     
  12. xrayspex

    xrayspex Senior Member

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    Kanga Sue---what effect did you have from getting the injection? Any kind of effects experienced right after and then were there any positive improvements you have noticed as a result?
     
    Last edited: Feb 25, 2017
  13. xrayspex

    xrayspex Senior Member

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    Ah I forgot I had researched this briefly in the past but found some articles like this one that minimized the usefulness of a D injection....Kanga did you research the disputed aspects of it or does anyone else know if injections could be easier way for us low D folks to get it? http://www.easy-immune-health.com/vitamin-d-injections.html
     
  14. kangaSue

    kangaSue Senior Member

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    I have to say I'm a bit disappointed that I haven't really achieved what I had hoped for from a big hit of Vit D but it was pleasing to at least tolerate it.

    I had no immediate negative effects. My GI system felt a bit more settled after a couple of days which was a lot of what I was after but that effect hasn't lasted, six weeks down the track it's no better or no worse. It has helped to improve my sweat response (I barely sweat in having sudomotor dysfunction) but that's a double edged sword as we've been having a particularly hot Summer and I had forgotten how uncomfortable it feels to be wet in a sub-tropical climate, nothing that's too hard to live with though compared to feeling like your burning up inside when you don't sweat properly in response to heat.
     
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  15. xrayspex

    xrayspex Senior Member

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    interesting, I rarely sweat for years and then diagnosed with sjogrens 6 years ago which can cause that.
    huh well keep us posted, thanks for the info.
     
  16. kangaSue

    kangaSue Senior Member

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    Other than the cost of it if you were getting regular injections, I didn't find a lot on negative issues. The real negative for me is that I couldn't tolerate it any other way with having sudomotor dysfunction too so couldn't just sit in the sun and had to have an injection or nothing. I would think twice about it if it had to be a regular monthly thing.

    Only Vit D3 as cholecalciferol is used here for large dose injections and the cost of that is reasonable here at about $32 plus the doctors visit fee but that's then a whole years worth.
     
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  17. TrixieStix

    TrixieStix Senior Member

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    @notmyself The only symptoms of Vit D deficiency I see listed that overlap with ME/CFS are fatigue and difficulty thinking clearly. However those are symptoms that can caused by lots of other conditions. Perhaps Vit D deficiency in a person with ME/CFS could increase those particular symptoms a bit, but Vit D deficiency does not cause ME/CFS. ME/CFS has a hallmark symptom that is found in only a few diseases, that is "Post Exertional Malaise". Do you have Post Exertional Malaise? Have you been tested by a rheumatologist for Fibromyalgia?
     
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  18. notmyself

    notmyself Senior Member

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    Hi..it can cause a lot of muscle problems aswell..Aparentlly vit D is very important for the neuro muscoskeletical system..I see a reumatologist ,she didin t think i have fybromialgia ,because i don t have the specific pain areas, and i don t feel extra pain on pressure...also the pain is not severe..About the post exortional malaise..this is probably the only one thing that separate Cfs than other diseases,but is so vague,i don treally know what ''malaise '' mean..i do feel tired the next day after exortion..but is not this the same for everyone?? It's not a dramatic change in the way i feel..Does PEM means you are are bed ridden ,like with a nasty flu ?
     
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  19. notmyself

    notmyself Senior Member

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    • difficulty thinking clearly
    • bone pain
    • frequent bone fractures
    • muscle weakness
    • soft bones that may result in deformities
    • unexplained fatigue.....this is just from one site...but everywhere i search..is fatigue and muscle problems..plus others..but this 2 are universal ,let's say like a hallmark in vit D deficiency!
     
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  20. Joh

    Joh Inactivist

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    Hi notmyself, PEM is not about being tired after exertion, it means that all of your symptoms intensify.

    So it depends on your main symptoms how it feels. For me it's for example the flu-like stuff like sore throat, low-grade fever, headache, cognitive problems, pain etc. It feels (for me) like a hammer on the head and all of these symptoms hit at once (they are always there but with PEM much worse). In my case it means to be bed-ridden (but I'm mostly anyway).

    You can read about PEM in the canadian criteria. If you don't experience PEM it might be worth to keep looking for other diagnoses. But you're right, it's difficult to know in the beginning, because it hits delayed and I guess feels different for everybody. But it's important, that it means intensified symptoms and not being tired after exertion.
     
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