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Hemochromatosis(High Iron) & Narcolepsy Symptoms


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Poll: Hemochromatosis(High Iron) & Narcolepsy Symptoms (10 member(s) have cast votes)

Do You Have Narcolepsy and High Iron (Hemochromatosis)?

  1. Yes (1 votes [10.00%])

    Percentage of vote: 10.00%

  2. No (9 votes [90.00%])

    Percentage of vote: 90.00%

Do You Have Narcolepsy and Hemochromatosis w/o Cataplexy?

  1. Yes (0 votes [0.00%])

    Percentage of vote: 0.00%

  2. No (10 votes [100.00%])

    Percentage of vote: 100.00%

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#1 2Tired4This

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Posted 20 February 2013 - 03:22 AM

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? 



#2 MINItron

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Posted 20 February 2013 - 07:36 PM

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.



#3 munky

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Posted 20 February 2013 - 08:47 PM

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.



#4 alixq

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Posted 07 November 2014 - 09:43 AM

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. 



#5 Potato

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Posted 07 November 2014 - 03:33 PM

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/.../76/7/1009.full http://www.ncbi.nlm....pubmed/11311689



#6 CheeryBunny

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Posted 10 November 2014 - 09:57 PM

My iron binding capacity is low and my ferritin is super high. I have N with C.