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Extremely high ferritin levels

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Unread 02-27-2013, 01:57 PM   #21
BdrsMrs
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Heart Possible Hemochomotosis

My husband has just received the numbers back on some blood work -
Iron 231 mcg/dl
Direct TIBC 244 mcg/dl
% Sat (Fe,DIBC) 95%
Ferritin 5363

We are waiting for an appt with a hematologist but we can't find much info on what would appear to be an EXTREMELY high ferritin #

Can anyone shed some light? He does have just about all the symptoms of hemochromotosis (joint pain, esp hands; low sex drive; chronic fatigue, low energy) and he is Northern European decent. His father died at age 47 from cardiovascular disease and his mother from lung/esophageal cancer.

Any thoughts??
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Unread 02-27-2013, 02:16 PM   #22
mrsD
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Labs can make mistakes.

I think a specialist would reorder the tests anyway.

There is alot on the net about hemochromatosis, now, so
do some homework while you wait for the appointment.
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Unread 02-27-2013, 04:05 PM   #23
BdrsMrs
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Quote:
Originally Posted by mrsD View Post
Labs can make mistakes.

I think a specialist would reorder the tests anyway.

There is alot on the net about hemochromatosis, now, so
do some homework while you wait for the appointment.
THANKS ... we have been but I thought it was worth asking
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Unread 08-02-2015, 05:03 PM   #24
gareththomasnz
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LOL its funny I just came across my post doing a google search

The years have passed quickly and I have been having regular 3 monthly venesections ever since they initially removed all of my blood in 2011.

No recurrence of the symptoms.

Also I became mainly vegetarian last year & my blood profiles are excellent now.

I cant recommend venesection enough. My older brother has been diagnosed with iron overload syndrome now too.

Also one of my friends got it as a consequence of heavy blood transfusions some years ago -unfortunately for him he may have organ damage

Its just one of those things that crop up with middle age - get it treated
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Unread 08-02-2015, 08:23 PM   #25
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Quote:
Originally Posted by gareththomasnz View Post
LOL its funny I just came across my post doing a google search

The years have passed quickly and I have been having regular 3 monthly venesections ever since they initially removed all of my blood in 2011.

No recurrence of the symptoms.

Also I became mainly vegetarian last year & my blood profiles are excellent now.

I cant recommend venesection enough. My older brother has been diagnosed with iron overload syndrome now too.

Also one of my friends got it as a consequence of heavy blood transfusions some years ago -unfortunately for him he may have organ damage

Its just one of those things that crop up with middle age - get it treated
Thanks so much for stopping to update!
Glad all is well with you now!

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Unread 08-03-2015, 10:14 AM   #26
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Originally Posted by frederick184 View Post
My results came back and my CRP is normal. Ferritin, of course, is still high. My other iron tests are also normal.
Hi. Serum iron tests are useless to rule it out. The test has to be TIBC. Also a liver function test is really important regardless of the cause. Scotland has a very high incidence of this disease as well.

Oops just saw you listed your level. A low inflammation diet may help with the bloat. I see an integrated md. She says bloat is bad! Mine is from prednisone. The diet has helped a lot. Good Luck.
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