Iron Man: A Young Person's POTS ME/CFS Recovery Story Pt. I

Discussion in 'Dysautonomia - Problems Standing, POTS, NMH, etc' started by Cort, Aug 23, 2016.


What are your blood ferritin levels?

  1. >100 ug/mL

    3 vote(s)
  2. 50-99 ug/mL

    3 vote(s)
  3. 25-49 ug/mL

    0 vote(s)
  4. <25 ug/mL

    2 vote(s)
  1. Issie

    Issie Well-Known Member

    I found it interesting that all grains have gluten. When they say gluten free they are talking about one type. There are hundreds and we may be reacting to one of the others that isn't tested. I know I don't do well with rice. He says we need to look at our meds and supplements too. This would include corn and sugar. He also said quinoa has 14 proteins similiar to wheat and if we react to wheat, we may react to quinoa. He advises against it. It will be hard to be totally grain free. But I want to try it and see how it goes. I think I have some sort of gut ecology issue going on right now. And I for sure have autoimmune issues. So we will see........

    Last edited: Aug 26, 2016
  2. Veet

    Veet Well-Known Member

    @Issie My final discovery in trying to eliminate all sources was the corn starch in my thyroid preparation. When I quit, the persistent sores I'd been experiencing finally resolved.
  3. Issie

    Issie Well-Known Member

    Which one are you taking? I tried Armor and it wasn't good. I think it must have something in it. I'm trying just iodine right now. Had been using kelp, but it wasn't enough.

  4. Veet

    Veet Well-Known Member

    @Issie I have T3 compounded by a pharmacist.
  5. Lissa

    Lissa Well-Known Member

    @Veet - if you don't mind my asking, what is your pharmacist using for a substitute filler?

    I'm also taking compounded T3, and I think I'm reacting to the current filler which is microcrystalline cellulose. I've requested they switch to ginger but haven't received my new batch yet.

    Just curious what is working (and GF, soy free, dairy free, yada yada) for other people? Thanks!
  6. Veet

    Veet Well-Known Member

  7. Veet

    Veet Well-Known Member

    @Issie Here's from the chemist: The filler that we use in T3 is commonly called Avicel.
    It also generally contains Methocel for SR.( slow release)
  8. Issie

    Issie Well-Known Member

    Lissa likes this.
  9. Lissa

    Lissa Well-Known Member

    Thanks @Veet -- Avicel is what's in my current prescription. It contains the microcrystalline cellulose that I think I'm reacting to. I'm still waiting for the new batch with the ginger substitute to get here.

    Didn't mean to hijack the thread, but was excited to hear that I wasn't the only one with ME/CFS who also had problems with T3 fillers! (At least I think that's the problem...)
  10. Raba

    Raba Member

    Got slow release tabs from store. Whe I first took it I noticed warmth. All the way to my skin and fingers. My heart felt lighter and I noticed my mood improved. Mind is clrarer. Less fatigue. My body temp went up. Was not expecting immediate effects. Heppens every time I take it.

    The benefits persit at day 6.

    Maybe this is why whey protein has helped me greatly the last 10 years. It contains lactoferrin. But it also increases my inflamation. So it was a double sword. I was also a sudden onset , 23 years ago.

    I had been on heavy antiacids and other acid reducers for several months before flu like onset onset.

    Never tried iron supps before because my levels were within range.

    Will keep u posted.
  11. ZeroGravitas

    ZeroGravitas Member

    Erm, @Cort, at the risk of sounding fussy, the unit of measurement for blood ferritin is either ng/ml or ug/L or mcg/L.

    In your article and poll you have a number of misprints, e.g.: ug/mL, ug/uL and Kg/L (which would make the blood denser than molten metal! :wacky:)

    You had me puzzling for a while there; hard enough to be sure I've got the units right as it is, however familiar I should be from my degree level science. Mostly people ignore units, but sometimes different labs switch between L and dL, for example, making the number just a factor of 10 out, so not necessarily going to be massively out of range and obvious that one has a spurious value.

    Interesting article, as always. :)
  12. ZeroGravitas

    ZeroGravitas Member

    Hmm, I wonder if there is a link here:

    "The body normally keeps levels of free iron in the blood low to keep bacteria dormant and block their growth."

    "...recent DNA sequencing methods reveal that each millilitre of blood in fact contains around 1000 bacterial cells.

    These bacteria are usually dormant. But they can be revived when iron becomes available in the blood, and begin secreting lipopolysaccharides (LPS) – molecules on their cell walls that are recognised by the immune system and stimulate inflammation."

    From New Scientist article, today:

    It's talking about diseases like Alzheimer's and rheumatoid arthritis, where serum iron levels (and inflammation) are raised. So what if low ferritin, in cases like the chap in your article, are part of the body's microbial self defenses, similar to Naviaux's CDR, causing fatigue side effects, possibly getting stuck on for too long, indefinitely...?

    Oh, and the article has this lovely microscope image of a bacterial cell wall and it's LPS (just for the sake of the prettiness):

  13. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    I agree - the idea that the body may be sequestering iron to keep it from bacteria is really intriguing. I just came across it as I was ending the blog...
    ZeroGravitas likes this.
  14. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Thanks - everyone was using different measurements and I apparently intermixed them. Blood that is denser than molten metal would not be good at all. I'll fix it up= appreciate your pointing that out.
    ZeroGravitas likes this.
  15. Aidan Walsh

    Aidan Walsh Active Member

    My Ferratin level is only 52 some say 95 is best