2Tired4This

Hemochromatosis(High Iron) & Narcolepsy Symptoms

   10 members have voted

  1. 1. Do You Have Narcolepsy and High Iron (Hemochromatosis)?

    • Yes
      1
    • No
      9
  2. 2. Do You Have Narcolepsy and Hemochromatosis w/o Cataplexy?

    • Yes
      0
    • No
      10

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6 posts in this topic

It's come up in some of my bloodwork that I have A LOT of Iron in my blood at the moment. I don't really know the exact # but the doctor actually thought my parents were giving me Iron supplements because of my levels. I only eat red meat a couple times a month. I have yet to look into this any further, but Hemochromatosis (or high iron) can give you extreme and constant fatigue. 

 

Does anyone else with N have high iron? If you have N and high iron are you cataplectic or non cataplectic? 

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I don't have hemochromatosis, but when I donate blood my iron level are normally in the upper range of normal. The only time I ever went above normal I was quite dehydrated. I have mild cataplexy, and moderate, but manageable EDS.

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I have N w/o C, and no hemochromatosis. My primary care doctor has been doing fasting bloodwork on me every 3 months for the past year, because of some other vitamin deficiencies and a borderline cholesterol count she noticed in my yearly physical, but there's been no mention of any issues with Iron. My next appointment is at the start of March, so I'll try to remember to ask about Iron levels.

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I have N + C and ferritin serum is 5x the max levels. I have not had any genetic testing done yet to see if I have it although I know it runs on my mothers side. You have to have the genetic defect on both side of the family, if it is just one you are just a carrier. If you are a carrier your children should be tested. 

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It's come up in some of my bloodwork that I have A LOT of Iron in my blood at the moment. I don't really know the exact # but the doctor actually thought my parents were giving me Iron supplements because of my levels. I only eat red meat a couple times a month. I have yet to look into this any further, but Hemochromatosis (or high iron) can give you extreme and constant fatigue. 

 

Does anyone else with N have high iron? If you have N and high iron are you cataplectic or non cataplectic? 

 

I imagine you know this already, but if your iron levels were higher than the reference range then you need to have additional labwork done because it's important to know if you do have hemochromatosis since that can eventually lead to organ failure.

 

One thing worth mentioning, iron status in the blood does not correlate with iron status in the brain due to the blood-brain barrier and its regulation on iron absorption. It's actually possible to have iron associated restless legs syndrome and hemochromatosis at the same time, surprisingly. http://jnnp.bmj.com/content/76/7/1009.full http://www.ncbi.nlm.nih.gov/pubmed/11311689

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