Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Mysterious iron issue

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Chiron, Dec 6, 2018.

  1. Chiron

    Chiron

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    I am having very frustrating experience with my anemia status, and no doctor can give me real answers.

    In the summer time, my ferritin was at 48 and my hemoglobin at 105 (10.5) after 2 iron IVs. After 1 month, my hemoglobin was still at 105 and my ferritin was at 3.

    A month and a half ago my hemoglobin was 125 and my ferritin was 76 after 3 iron IVs. Now my hemoglobin is 135 and my ferritin is 20.

    No doctor can explain why my ferritin continues to drop so much yet my hemoglobin barely goes up. I am not bleeding either.

    Some theories:
    - I started going back to the gym just over a month ago and have gained 15lbs
    - according to the Root Cause Protocol people, ferritin is not a reliable indicator of how much iron is in the body and actually only shows inflammation levels; iron that is not adequately co-factored with ceruloplasmin (copper) and magnesium will end up in random tissue rather than in the serum and will give a low ferritin reading
    - I have bleeding somewhere I don't know about -- I do have IBD ulcerative colitis, but my stool tests show no occult blood and I've been in remission for months
    - I have simply been recovering and the iron requirement has been very high for some reason

    According to conventional wisdom, iron only leaves the body through bleeding, which is not happening right now. I can't find any literature on why ferritin would drop so low in such a short time.

    Right now I am definitely feeling it. Weaker, more tired, more brain fog. So the anemia is real, whether iron is just "gone" or in some mysterious random bodily tissue.

    Does anyone here have any idea??? I have seriously been to 3 doctors and two naturopaths and nobody knows. They just keep giving me more iron IVs.
     
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  2. Tammy

    Tammy Senior Member

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    Viruses love Iron. That's my theory based on what I've learned.
     
  3. Markus83

    Markus83

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    If you have a bleeding source in the upper digestive tract like the stomach, the test for occult blood in stool are not helpful as far as I know. Maybe it makes sense to get a gastroscopy? Anyway, I have the same problem with very low ferritin (8, as a male). No bleeding source has been found and not chronic inflammation disease of the gut like CU or MC. I think it has to do with inflammation and chronic infections in my case. The inflammation regulates up a protein called hepcidin, so that you cannot absorb iron anymore. On the other hand I have chronic infections which also might take away iron for their own metabolism. That's my hypothesis for my particular case.
     
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  4. Chiron

    Chiron

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    I wonder what kind of infection it could possibly be. I've had all manner of infectious tests. I am positive for mycobacterium avium paratuberculosis (MAP), but a large number of the population have mycos in their body already.

    In my case, the huge drop in iron would mean that there's a crazy infection going on -- but I have no symptoms?? More than 50 points in one month is huge!
     
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  5. Tammy

    Tammy Senior Member

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    No symptoms? No Fatigue? Aches and pains? Anything?
     
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  6. taniaaust1

    taniaaust1 Senior Member

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    Hi, one of my ME/CFS specialists once told me low ferritin is very common in ME/CFS. His reason why this is so was its cause the body is having to replace white blood cells (those which fight infection) faster.

    In my case cause I have issues with hyperinsulinemia too, for that diet I need to eat meat,fish or eggs with every meal (to help stop insulin spiking so much), I'm a huge meat eater AND also have the gene mutation which can cause excessive iron to build in the body but STILL I have low ferritin due to the ME/CFS to the point that its often at borderline anemia levels.
     
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  7. Gingergrrl

    Gingergrrl Senior Member

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    Very interesting and I am going to follow this thread @Chiron and hope that you figure out what is causing the low ferritin. I was literally just Googling trying to understand the differences between iron and ferritin (and why my iron is now normal but my ferritin is still low).

    I was also anemic with low B-12 but that has been corrected due to daily supplementation with iron, Hydroxo B-12 & Folinic Acid. But my ferritin remains low. I will be re-testing everything soon (in mid-Dec) and hoping it has gone up. Like you, my occult blood stool test was negative.
     
  8. Hip

    Hip Senior Member

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    Why not consult Dr Phoenix?
     
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  9. Chiron

    Chiron

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    Fatigue from the low iron I guess, that I only recently started to feel.

    This makes sense... the body is fighting itself (or an incurable invader), so the WBC turnover would be faster. I was neutropenic just a month ago (neutrophil count was 0.9 and normal is at least 1.5). Then I caught a cold that took a week or more to fight off. Now my blood work shows the neutrophil count to be 3.6. So neutrophils shot up a lot to deal with the cold. Maybe it consumed iron to do so?

    That still doesn't totally explain what's going on. Dead WBC, along with dead RBC, get broken down in the spleen and liver. Their iron is then recycled. There should technically be very little iron loss in the body.

    The other thing I'm considering is that since the ferritin test a month ago when the results were much higher, I started back at the gym building muscle. I've gained maybe 10-15lbs or so. Muscle requires myoglobin, which has one heme group (compared to four in hemoglobin). So maybe building muscle has also consumed iron.

    In a nutshell, I have been building muscle while also rebuilding hemoglobin, while also not being able to absorb iron properly in my GI... that all has to take a toll on iron stores, I'd imagine?

    If there's no bleeding, then the iron should be going somewhere. Like it's somewhere here in the body... but where? Muscle (myoglobin)? WBC? Hemoglobin? Parasites?

    I don't even know how to properly investigate this.

    I'm also a big meat eater, for similar reasons. My gut has been so damaged by IBD that it absorbs poorly, so I need really nutrient dense food to compensate. Every calorie has to be chalked full. So I go for meat a lot.

    I also take hydroxo B12 and MTHF, by injection. I've always been torn by how frequently I should do this. I tried doing it daily once and it really messed me up... so now I do it once per week.

    I'll let you know what comes of my investigation.
     
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  10. valentinelynx

    valentinelynx Senior Member

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    I have developed chronic bleeding from my small intestine with persistent low hemoglobin. My ferritin goes up after iron infusion and then drops steadily over the next several weeks as I use up the iron in making red blood cells. GI docs have diagnosed the problem as NSAID enteropathy, which made sense initially because I was taking the maximum allowable dose of ibuprofen. However, after being off of NSAIDs for nearly a year, I continue to have bleeding and ulcers in my small bowel. The ulcers (and strictures) were found when I had a PillCam study (you swallow a camera shaped like a large capsule that takes photos of your small bowel and transmits them to a receiving device you wear). Pretty cool.

    I also stopped absorbing oral iron well, so I now need periodic IV iron infusions. I also needed some blood transfusions last year, but things have improved since then.

    I have Hemoccult slides at home (got them off of Ebay) to test my stool for blood. I've learned that this text is a bit finicky. You can't take more than 250 mg of Vitamin C per day, or it will degrade the heme, causing a false positive test. Also, as someone said above, if the bleeding is high up in the gut, and especially if your gut moves slowly, like mine, then the heme may be degraded by the time it reaches the end zone, so to speak...

    I'm sure you've had upper and lower GI scopes? I would also recommend the video endoscopy to look at your small intestine for occult blood loss. One caveat... if you have strictures, like I do, there's a risk of getting the PillCam stuck in the intestine. This happened to me and it was an adventure getting it removed. I really wasn't worried about it, but my GI doc was freaked out by it!
     
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  11. Gingergrrl

    Gingergrrl Senior Member

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    This is very creative @Hip (Dr. Phoenix ;)) and he is my second doctor (after Dr. Google). I bookmarked it to look at some of the links when I have more time.

    @Chiron, I don't do injections but I take a sublingual lozenge that is Hydroxo B-12 & Folinic Acid by "Seeking Health". I also take their B-complex which is called "B-Minus". I take both once a day. I can't tolerate the Methyl versions of B-12 or Folate and was thrilled when I finally found this one. If you are doing the injections daily (or now weekly?), what was the dose?

    Yes, please keep us posted and I will do the same when I re-do my tests mid Dec for my Endo. We are monitoring a bunch of stuff as I am tapering down on Cortef and keeping track of my low iron and ferritin. My Endo and main doctor were both concerned about the low ferritin which was 23 at last test. The range started at 15 so it was technically inside the range now but still low.

    Hi VL... I know you were asking Chiron but wanted to give you a (super brief) update that I haven't done colonoscopy yet b/c still trying to find a local anesthesiologist that I can talk to (who would be involved in my case). This is much harder to find than I'd imagined but I plan to devote more time to it in 2019. Thank you again for all of your help re: this issue in the past.

    Holy crap, the Pill Cam got stuck in your intestine?!! This sounds horrible :nervous:
     
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  12. Hip

    Hip Senior Member

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    Yes, Drs Google and Phoenix are a formidable pair of physicians!
     
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  13. taniaaust1

    taniaaust1 Senior Member

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    My blood tests in the past used to come back borderline low with that.

    thanks, if I even get to go back to that doctor I'll question him more about it.

    When I was on hydroxo B12 injections, I could always notice the injection wearing off 4-5 days after it. In my case the only time one of those injections messed me up in some way was when I had left an injection sitting out in light for a time before using it. (they should not be exposed to light).

    I ended up going to using the methyl form of B12 under the tongue and found that more helpful. Different forms can really make a difference with things.

    @Gingergrrl I think one of the doctors explained the difference as the ferritin levels are about the amount of iron in reserve.. the iron storage levels. If you do not have ok iron in store it means you can be at times running low in your actual iron needs.
     
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  14. valentinelynx

    valentinelynx Senior Member

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    I'm really sorry to hear that it's such a challenge. I know you have your reasons for avoiding the university hospital we discussed, but it may be your best option for talking to an anesthesiologist ahead of time. Or maybe you could travel a bit to go to a university hospital that is not as close by?
     
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  15. Crux

    Crux Senior Member

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    Neutropenia is often found in copper deficiency. Many people have been able to increase their iron uptake with the addition of copper.
     
  16. Gingergrrl

    Gingergrrl Senior Member

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    LOL :_

    Thank you, Tania, and I need to study this further. My iron levels have improved by my ferritin remains low.

    I truthfully have not devoted the time to it that I should b/c I have had so much other stuff going on. I want to try to find a local GI doctor and anesthesiologist who I could talk to in advance of doing the procedure. My main doctor mentioned an anesthesiologist that I might be able to consult with but didn't send me the info yet (but I know he is super busy and this is not an urgent issue). Sorry to the OP for going off-track!
     
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  17. Markus83

    Markus83

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    Iron in serum does only tell you what you had for breakfast this day. It's irrelevant (although it is used together with transferrin to calculate transferrin saturation). If ferritin is low, then you have an iron deficiency. There are several other paramters which have to be taken in account to see what's going on: iron, ferritin, transferrin, CBC, CRP, sTFR, CHr/Ret-He. You need them all together from one blood sample. Google Thomas-Plot for more information.
     
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  18. Gingergrrl

    Gingergrrl Senior Member

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    Thank you @Markus83 for all of that info. This leads to my next stupid question... does that mean that iron should always be tested on an empty stomach? In my case, it actually was b/c when I do the tests for my Endo (for thyroid levels, Cortef levels, etc), it is always done on an empty stomach prior to eating or taking Armour or Cortef (and prior to taking iron). But I didn't know if the tests for iron & ferritin should "officially" be done on an empty stomach?

    Thank you for explaining it so clearly which is exactly what I wanted to know. It sounds like iron can be stored but ferritin is what is directly accessible to the body. Is this correct?

    I wrote it down on my long list of things to Google and I definitely will. I will be doing all the tests for my Endo (including iron & ferritin) within the next two weeks.
     

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