New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
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High ferritin low iron

Discussion in 'General ME/CFS Discussion' started by iwillwin1day, Jul 11, 2018.

  1. iwillwin1day

    iwillwin1day Senior Member

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    Initially for some years my ferritin was borderline high and serum iron was borderline low . Now my ferritin has gone above normal and serum iron below normal. How can I increase my serum iron and decrease my ferritin. Also I can't take iron to increase serum iron as my ferritin is already high.
    Plz help.
     
  2. pamojja

    pamojja Senior Member

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    What does you transferrin, transferrin saturation and total-iron binding capacity show?
     
  3. Rossy191276

    Rossy191276 Senior Member

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    My doctor who is a long time ME doctor contends that high ferritin is a key marker for subset of ME sufferers indicating inflammation. I think he is right for me rather than ferritin being related to high iron because when I am worsenit goes well above normal but the longer I don’t have a crash the more it reduces to sometimes within range. My transferin saturation is always high. So if you have low iron but your ferritin is just reflecting inflammation you should be able to take iron without increasing ferritin.
     
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  4. iwillwin1day

    iwillwin1day Senior Member

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    Transferrin saturation low at 10. TIBC and Transferrin are normal.
     
  5. iwillwin1day

    iwillwin1day Senior Member

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    Yes. Mine is due to inflammation only. Thanks.
     
  6. pamojja

    pamojja Senior Member

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    To you have constant high ESR and CRP? Exceptionally high ferritin can be due to inflammation, but since your ferritin already was borderline high for years, I would see if I could do something against the underlying chronic inflammation (if there is).

    PS: Only had a sky high ferritin of 342 ng/ml once with a myopericarditis 12 years ago (with iron at 9 µg/dl, transferin saturation of 4 %, CRP of 96 mg/L and ESR of 77 mm/hr). But otherwise ideal ferritin in average at 79 ng/ml since (despite somewhat elevated inflammation with a CRP of 2.7 and ESR of 21 in average since).
     
    Last edited: Jul 12, 2018
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  7. iwillwin1day

    iwillwin1day Senior Member

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    ESR and CRP where normal when my ferritin was 150. Now I don't knew what they are as i have not tested them.
     
  8. Learner1

    Learner1 Forum Support Assistant

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    Ferritin is an acute phase reactant, where its serum concentration tends to increase moderately in the presence of inflammation.

    With a high serum ferritin it's important have a full iron panel done, which will tell you if you actually do have high iron or not.

    My serum ferritin went over 600 a couple of years ago. My doctors were very concerned and dent me for a CT scan to look for cancer as im a cancer survivor. It wasn't, fortunately, but I did have multiple infections, which my doctor thought might be in my liver.

    Treating the infections improved my serum ferritin, but it was still around 270. My iron panel was weird, as it had been all along, so my doctor tested me for the HFE gene SNPs, snd it turned out I had 1 copy each of the two most common SNPs for heriditary hemochtomatosis, or iron overload. As I wasn't homozygous for the msin SNP, I had a milder version than most hemachromatosis patients.

    Doing phlebotomies to get rid of 250ml of blood every 3 weeks for a few months brought my ferritin to normal.

    So, high ferritin could mean a lot of things. This attached guide from the Irin Disorders Institute tells you how to read an iron panel, and what you've shared looks like it might be "anemia of chronic disease," but check for yourself.

    But, best to have your doctor investigate why its high. It's telling you something...
     

    Attached Files:

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  9. Rossy191276

    Rossy191276 Senior Member

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    Hi @Learner1. Iron panel findings have been something that I looked at from the start of my illness and I just checked out the attached document again.

    My history since illness onset is: Generally- mildly elevated serum ferritin (300-450 range), consistently high transferrin saturation (55%-65%), normal serum iron, low transferrin levels.

    In the last year I have also had very slightly elevated AST/ALT levels at times.

    I am also a carrier of one c272y mutation.

    My doctor has always contended that the results are based on inflammation as part of ME but I've also found that transferrin saturation is supposed to be low/normal with inflammation (but given that I have low transferrin and normal serum iron it is a given that transferrin saturation will be high).

    But the thing is that i have had serum ferritin as high as 470 I think and also transferrin saturation as high as 65% but without taking blood out my serum ferritin has come down as low as 250 (after the 450 measure) and transferrin saturation was down to 47% last time.

    My question is this: If I did in fact have iron overload my thought is that it would be impossible for my ferritin to reduce like it has at times without blood letting- and I would likely have high serum iron which I don't... Therefore my ferretin must be somewhat related to inflammation. Do you agree with this?

    Cheers

    Rossy
     
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  10. Learner1

    Learner1 Forum Support Assistant

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    Hi Rossy,

    I compared the numbers you gave with the Iron Disorders charts. It would be helpful if you had a full iron panel done, so you could compare all the numbers with the charts.

    So, did you mean you have one C282Y? Did they look at H63D? If you have one of those, too, then you'd be compound heterozygous like me. My case went under the radar as my doctor was expecting to see a serum ferritin over 1000 but mine was a milder case as the C282Y homozygous cases are worse than the H63D.

    Even with the one copy, it might just be a milder case. It's hard to tell exactly, because you didn't give numbers for all the columns, but following the flow chart on page 1, given that you've had elevated ALT and AST, it might be reasonable to do a trial phlebotomy. The doctor ordered a smaller amount taken out of me, only 250ml at a time, so as not to shock my body.

    But, looks like it could also be sideroblastic anemia (B6 deficiency), B12 deficiency, thalassemia, or porphyria. You'd have to dig into the details of those.

    If it is hemachromatosis, though, the iron overload is bad for your mitochondria, bad for your liver, etc. and can cause fatigue, as well as feeding any infections that might be lurking. MY ME/CFS specialist was very on biard with my getting rid of extra iron. You'll need to get rid of it. There is a chelator for it, but that can be hard on your body, it's easier just to get rid of it. It's a pretty simple process.

    And, any of the other possibilities can contribute to your symptoms. Worth investigating each. What's your MCV or methylmalonic acid like? Homocysteine? B6? TIBC? UIBC?
     
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  11. Rossy191276

    Rossy191276 Senior Member

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    Great that you were able to pick up on the genetic process in your case!

    I have had several iron panels done and they are usually: Normal Serum Iron, High Transferrin (in the 320-450 range), Very Low Transferrin, Low TIBC, High Transferrin Saturation, Normal Hemoglobin.

    Sorry yes I am a C282Y carrier (negative for H63D). If I was in a better state I would just ask for a trial phlebotomy but the normal Serum Iron and the fact that my ferritin had reduced from 470 to 260 without phlebotomy a while back (last time it was back up to 320) make me think something else is at play rather than high iron.

    I also have borderline low Albumin and Total Protein Levels and given Albumin and Transferrin are both made by the liver I think one possibility is that metabolic problems are causing these issues which result in low transferrin and TIBC, and high Transferrin Saturation.
     
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  12. Learner1

    Learner1 Forum Support Assistant

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    So, my ferritin got down to 280 by dealing with my infections and slowing my detox processes, but wouldn't budge further. But I had 4 years of the same weird pattern in my iron panel. It took 5 phlebotomies to get my serum ferritin down to 70, where it stayed, along with all other numbers normal for 4 months before they all crept into the same abnormal pattern.

    You haven't given UIBC, unbound iron binding capacity, have you?

    I'd suggest you study page 2 of the dociment I posted earlier. It has all the symptoms of hemochromatosis, as well as patterns for sideroblastic anemia (B6 deficiency), B12 deficiency, thalassemia, and porphyria.

    Also, Tables 2 and 3 in the attached iron metabolism document should be helpful. It details OTHER genes, besides just HFE which can contribute to iron overload and describes the other iron problems.

    I was where you are, but I had a hematoligist screaming at me that I was an idiot to be refusing a phlebotomy as my organs would all be destroyed and I would eventually die if I let my high iron continue, when all I was asking for was clarification, and wondering if the high dose vitamin C or my chlamydia pneumoniae infection could be causing it.

    The second attachment discusses how iron overload can damage your mitochondria.

    The third one discusses iron with infections, and last there's one on chlamydia pneumoniae and how it uses the host's iron.

    And have you had a methylmalonic acid test? If its high, you may just be B12 deficient. Its a better test than serum B12.
     

    Attached Files:

  13. mariovitali

    mariovitali Senior Member

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    Please check yourself for a condition called Hemochromatosis. See in my signature a link that points to a list of conditions that may co-exist with ME/CFS (Hemochromatosis is one of them)


    @Janet Dafoe (Rose49) One more case with possible Liver-related issue ?
     
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  14. Rossy191276

    Rossy191276 Senior Member

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    Thanks for all that @Learner1. I checked out those documents. It seems ferritin needs to be very high before it starts doing damage to organs...

    No I have never had a UIBC score. I checked out the Page 2 graph and the thing is that I always have normal serum iron and haemoglobin. But also always have borderline or high ferritin, high transferrin saturation % and low transferrin and TIBC.

    I went online and asked 2 Hemotologists if it was possible for ferritin to reduce from 450 to 260 like has happened to me in the past if it was iron overload and they both said it wasn't possible to iron levels to reduce like that so must have been inflammatory reduction.

    As I said if I wasn't so weak already I would be inclined to try a blood reduction but given that I am already bed bound I am very reluctant unless the evidence was as close to conclusive as possible.

    Do you think those other genes you mentioned would be covered in the GeneDx testing? If so I might be able to get my geneticist to look for those...
     
  15. Learner1

    Learner1 Forum Support Assistant

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    I'd guess so. They were in my 23andme results and confirmed by a standard medical lab since the hematologist is not a fan of 23andme.
     

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