Question re: iron overload (Hemochromatosis) and CFS,FM

Discussion in 'Fibromyalgia Main Forum' started by mrdad, Jun 29, 2006.

  1. mrdad

    mrdad New Member


    Have any of you been afflicted with CFS or Fm after

    having been diagnosed with the genetic blood disorder

    Hemochromatosis?? A mainly Northern European gene mu-

    tation very prevalent among people of Celtic origin.

    I'm interested in finding any possible links.

    Thanks,
    MRDAD
  2. victoria

    victoria New Member

    I can tell you it was one of the first things we checked for on our son as his paternal grandmother (Finnish/English) has it. He was negative, and as you may know, he does have Lyme...

    But there is a huge overlap in symptoms with CF/FM, which is why we had our son tested for it to begin with. I was hoping actually he had it as the solution is easy if caught early - just give blood until your iron levels are down. It is something that he and my daughter will have to continue to check for however.

    It can happen at any time/any age really for either sex.

    Men genereally experience symptoms much earlier than women. The excess iron ends up in the liver and so one will ultimately get ill effects much sooner - but men should not let any doctor dismiss them because they are older, it can still activate somehow at an older age.

    Same with women, they can get it early in life altho women usually are not dx'd until much later (like my MIL) because menstruation usually is pretty effective at decreasing excessive iron loads.

    My MIL started experiencing problems in her late 60s with joint aches and fatigue, and would've ended up fitting the profile of FM. FM wasn't considered, as that was before the dx of FM was really used much.

    There is an organization, americanhs.org where you can find more info.

    Hope this helps,
    Victoria



    [This Message was Edited on 06/29/2006]
    [This Message was Edited on 06/29/2006]
  3. mrdad

    mrdad New Member


    I know that you and I have corresponded previously con-

    your MIL and her Hemochromatosis. The symptoms are very

    similar amd as I've mentioned before, I developed liver

    disease fromit before it was diagnosed. I'm trying to est-

    ablish if there could be any poss. link as I understand

    that the hemachrom. can be a link to Alzheimer's, M.S.,

    Hunington's, Lou Gehrigs, Parkinson's, Epilepsy. It

    would be "a shame" to leave out CFS and FM. This could

    be considered a violation of the "Equal Opportunity

    Clause" of the Constitution"??

    Thanks for your in put Victoria. Thats's my Daughter's

    beautiful middle name!!

    MRDAD P.S. There is a genetic test
    for Hemochromatosis.




  4. victoria

    victoria New Member

    MrRDAD - did you find any remission in your symptoms with treatment for the hemochromatosis? Or did they progress? I agree that hemochromatosis should be something automaticaly tested for when CFIDS/FM or Lyme, etc., is considered.

    My kids and DH have had the genetic test and came up negative, but they do caution it is not foolproof. So one should still get tested regularly as there may be other genes or other factors involved.

    Well, the bad news is that my MIL DOES have vascular dementia... she has artherosclerotic plaques in her brain and dead areas that show up on her MRI. The doctors haven't mentioned a connection, altho they do know she has hemo., of course.

    I do feel that anesthesia about 10 years ago was the start of her mental decline, tho. At this point her memory comes and goes, most of the time she doesn't know where she is and often even who her son is even... she is turning 89 in Aug.

    JINLEE - have you checked out what some of the organizations say about iron levels... just wondering if there might be some disagreement. It would be kind of interesting to see if you felt better after giving blood, if it were possible. I know I'd be tempted to try, just to see.

    all the best,
    Victoria

  5. mrdad

    mrdad New Member


    Thanks for responding to my Post. It's good that you are

    aware of the family "blood disorder". Your genetic back-

    ground does put you in the circle of the "anointed

    ones"! Keep an eye on iron and ferriten levels. I re-

    commended that my children not get the genetic test so

    as not to have a "red flag" on their Med. record. Ins. Co

    love to find "pre-existing" conditions to deny coverage!!
    Thanks,
    MRDAD P.S. My Daughter leaves in Portland
    and loves it!!



  6. mrdad

    mrdad New Member


    I continued to become more and more fatigue with the

    treatments (blood draws) everyweek for 3 years. My

    Ferriten was over 7300 and now it is at near normal

    levels 180. Muscle and joint aches have become more

    frequent but not as bad as many others on this Site

    it seems. I'm fortunate so far in that respect yet

    feel all my smyptons are becoming more acute.

    Searching for any common correlations to my own ex-

    periences. (??)

    Thanks again,
    MRDAD

  7. mrdad

    mrdad New Member


    Yes, I believe that both parents have to be positive

    carriers in order to pass it on. I have three living

    siblings who have not come down with the disorder how-

    ever, so I'm uncertain as to why. My parents both passed

    on years ago never knowing they had the defective gene!

    More info. is available on www. americanhs.org

    Sincerely appreciate your input!
    MRDAD
  8. victoria

    victoria New Member

    thanks, I need those quite often. LOL..

    so you may have answered this question before, as I have a vague idea that we talked about this as well: have you been also checked out for lyme, mycoplasma etc. as well as perhaps try some trials on abx to see if you do have an infection?

    What do your doctors think about you not feeling better despite the weekly blood draws... I'm assuming you are still have high levels in iron in blood tests of course.

    best,
    Victoria