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Low ferritin (5) despite IV Iron

Discussion in 'General ME/CFS Discussion' started by trev343, Oct 2, 2015.

  1. trev343

    trev343

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    Hey everyone!

    2 years later and I'm still sick. Most of my issues at first were very much CFS/ME with fatigue so bad I couldn't stand up in a shower etc.

    I have gotten much better over the past year to where I can play basketball... but other symptoms have gotten worse.

    I just have a general feeling of being sick, mostly in my head. Neck is slightly stiff and brain fog is tremendous.

    Early on I tested low ferritin. I received high dose IV iron but it didn't even make a change. I got it again, no result.

    Does anyone have any ideas related to what organisms can make me feel sick and use iron in their metabolism? Or maybe could my body be sequestering Iron to reduce inflammation? But Ferritin is an acute phase protein, so it should go up if my issues were from inflammation.

    I don't have any bleeding that I know of and tested negative for all parasites.
     
    alkt likes this.
  2. drob31

    drob31 Senior Member

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    I know that I take probiotics that have high amounts of iron in them, presumably from the probiotic bacteria. So this suggests some bacteria use allot of iron.
     
    alkt likes this.
  3. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Which probiotics are those?
     
    alkt likes this.
  4. drob31

    drob31 Senior Member

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    Primal Defense by garden of life.
     
    alkt and Never Give Up like this.
  5. justy

    justy Senior Member

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    Have you been tested for chronic intracellular bacteria like Lyme, Bartonella etc? I have also had a ferritin of around 5-9 for the past 8 years at least and nothing will get it higher than around 9, and then that is only temporary.

    I DO have Lyme and co infections, but not saying this is causing it in you, just a suggestion - especially with the stiff neck, and improving and then relapsing is common too!
     
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  6. trev343

    trev343

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    Testing came back negative and i'm not a fan of the whole Chronic Lyme thing anymore.

    Its a serious problem for a lot of people, but for most its the case.
     
    justy likes this.
  7. barbc56

    barbc56 Senior Member

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    Are you seeing a Hematologist?

    Barb
     
  8. alex3619

    alex3619 Senior Member

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    Do not presume that ferritin=iron. It doesn't. My doctors made this mistake as well, although in my case it was skyrocketing ferritin and very low iron. You need a full iron study. Iron cannot be easily lost except through bleeding. If it went in via IV and not a tablet or something, then its in there. In some cases it can be rapidly stored in the liver. Increasing iron intake via IV on a regular basis will just increase liver iron in those cases, and might eventually become toxic.

    You also need to have some red blood cell studies.

    I would be looking at other roles of ferritin. Of the top ten or so diseases with ferritin involvement, only one involves iron. I am not an expert on this though.
     
    dannybex, merylg, alkt and 3 others like this.
  9. jess100

    jess100 Senior Member

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    I also read that the body will intentionally decrease iron levels to assist in fighting infection ("Why We Get Sick", by Neese). Neese claims that iron shouldn't be replaced until the infection is found (as we'd be feeding the infection)... I'm not sure about ferritin -but it's likely. He claims most doctors don't know this-and I believe him.

    Presumably it could be a symptom of another infection rather than the cause of your sickness.


    Also you might not have Lyme but could have one of the 11 other tick borne illnesses as I have. No Lyme, just 2 others. Unless your doctor is especially sharp she can miss this. The eBartonella blood test by Galaxy Labs claims to be 10X more accurate at finding Bartonella than standard tests. If this is anywhere near true, how inaccurate must the standard test be? There would need to be a lot of false positives. How many of us ruled out a sickness only because the test is terrible?
    good luck! I know this sucks.
     
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  10. joanierav

    joanierav

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    you must take b 12 with your iron if you want to increase ferritin levels. thats what my doc told me. i take the shots and then the iron tablets. it worked for me. albeit slowly.

    joanie
     
    alkt likes this.
  11. barbc56

    barbc56 Senior Member

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    What kind of doctor prescribed the IV iron?

    I agree with @alex3619 . There could be a myriad of things going on. that need investigation.

    I would be cautious about taking oral iron since the IV infusion didn't work. I had the IV and it took most of the day. Do you know how much iron you received? How long was the infusion? My ferritin level increased a lot and is still normal after five years.

    I didn't get a lot of benefits such as more energy, but it really helped with my Restless Legs Syndrome.

    None of us are experts nor can we give medical advice. What works for one person doesn't for another. This is why you need a specialist or at the very least your primary care physician.

    What did the doctor say when your ferritin levle remained the same?

    Good luck and keep us posted when you can.

    Barb

    I read that you had a question about chelation? Are you getting this?
     
    Last edited: Oct 3, 2015
  12. trev343

    trev343

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    I am seeing a ton of specialists, the thing is, they are stumped as to what is going on. Sometimes I find really smart people on sites like this who brainstorm.

    I forgot the dose, but it was the highest she could safely go. More than enough to get it into the 70's at the very least she stated.

    I had a case of allergic colitis go away after getting my silver amalgams taken out. I have been doing some natural chelation with ALA, not going to do any other chelation than that.

    I am thinking I have some sort of parasitic/bacterial that is chronic and uses iron as part of its metabolism. Going to see an infectious disease specialist next week, hopefully.
     
  13. valentinelynx

    valentinelynx Senior Member

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    Found this comment from someone with experience online: (http://www.parkhurstexchange.com/hematology/2010-03-09?zid=)
    1. In partially-treated iron deficiency anemia, serum ferritin remains low when hemoglobin and serum iron have returned to normal. Ferritin returns to normal when iron stores get repleted with further iron therapy.
    2. Besides iron deficiency, there are two other conditions that are associated with low serum ferritin. One is hypothyroidism and the other is scurvy.
    It may be that you simply need more iron over a longer period of time, if your stores were terribly low. You may also be continuing to lose iron through bleeding. Have you done fecal occult blood tests? Upper and lower GI endoscopy will miss bleeding if it is in the small intestine. This is what happened to me. You would need a PillCam study to find the bleeding.

    Hope this helps.
     
    trev343 likes this.
  14. trev343

    trev343

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    Hey those are both valid points but sadly, I have ruled those to out as causes. Its been 24 months now, my gut is working great. Test showed no bleeding. I could get an endoscopy to double check for blood.

    Thanks anyways though!
     
  15. Eeyore

    Eeyore Senior Member

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    I don't think it sounds like a pathogen is eating your iron.

    More likely, there is a problem with the way your body is regulating iron use and storage. Alex is right though that it's really hard to get rid of iron once you have it. Chelation might do it - and I note you mentioned that - so that might be part of the problem. Depends on the type of chelation (I'd urge you to think long and hard about chelation therapies - they are very unproven in ME and in general unless serum levels of some metal are at dangerous levels).

    Iron is lost from the body primarily through bleeding. This is why women have less iron than men normally (during child bearing years). It's also why hemochromatosis affects men at an earlier age. The iron went somewhere - it's not easily lost.
     
  16. aquariusgirl

    aquariusgirl Senior Member

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    It's interesting.....the problems with iron & copper metabolism. I note that in Parkinson's they are doing trials chelating g iron .....at Imperial College London ..
     
  17. Lou

    Lou Senior Member

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    What is said here regarding chelation therapies being 'very unproven in ME and in general' does not correlate to my experience. None of my serum levels for heavy metals were at dangerous levels. Of the untold number of therapies I've tried in the last thirty years chelation is right there at the top along with gcmaf. Nothing else is even close.

    It had dramatic effects for me personally that in one way can be summed up as feeling twenty years younger. I would, without hesitation, do it again if a clinic could be found that still uses di-sodium edta (don't know what happened with it, must have worked too well and has widely been replaced with calcium edta which for me was a waste of time and money).

    It is bothersome to see someone make such a negative blank statement about a therapy which is so at odds with the results it gave me. I doubt the poster speaks from his own experience. On the other hand I've mentioned what it did for me and I've seen absolutely amazing results in fellow patients at the time of my treatment.
     
    Last edited: Oct 4, 2015
  18. Eeyore

    Eeyore Senior Member

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    No, I have not used chelation. I do not believe there is scientific justification for its use in ME in the absence of elevated toxic metals. I don't understand any mechanism that might suggest it would work if there is no toxic metal to chelate. Chelators are generally specific anyways, and only work for the targeted metal or metals.

    Dr. David Bell, an excellent ME researcher and clinician, treated some of his patients with saline infusions. They experienced great benefit. Many ME patients are hypovolemic and have mild diabetes insipidus. This may be why patients notice benefit with the sodium and not with the calcium. Sodium will increase plasma volume.
     
  19. globalpilot

    globalpilot Senior Member

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    To the original poster
    Another thing you could check is 'anemia of inflammation'. In this case IL-6 is elevated and this causes iron to stay in storage and out of the plasma.
    According to this paper: http://www.goodlifepharma.be/docs/PaesanoRBiometals2010.pdf.
     
  20. barbc56

    barbc56 Senior Member

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    I think this bears repeating.You can have one normal and one abnormal or any combination and still be anemic. My blood count was normal but Ferritin very low. Low ferritin is a type of anemia and you get symptons.

    The level of ferritin may depend on your health condition. I believe 50 is normal but need to check. I have RLS and for that you need to have your ferritin levle higher than 120.

    Barb
     

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