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Are there other causes of high iron besides hemochromatosis?

Posted by elmtree @elmtree, May 21, 2019

My iron saturation has been at 75% for at least a year (since I first checked). I was tested for hemochromatosis and found that I did not have it. I do carry one each of a couple of the genes for this. My total iron is 210.

C282Y: One copy of the C282Y mutation was identified.

H63D: Not detected.

S65C: One copy of the S65C mutation was identified.

I am wondering what could be causing this. My symptoms are fatigue, frequent mouth ulcers, and tongue swelling.

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Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | May 28, 2019

Hello @elmtree. Did your provider suggest any possible reasons or further testing to be done to help find another cause? Here is another discussion you may want to check out to see what a few other members had to say about high iron counts in their blood, https://connect.mayoclinic.org/discussion/iron-overload-in-blood/.

REPLY
elmtree | @elmtree | May 31, 2019

The doctor who ordered the test thought my genes mean I could have a lighter version of hemochromatosis and he thought I should give blood. My general doctor does not think this is necessary because my ferritin is normal and I don't have any organ damage.

Thanks for the link.

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1 reply
judyn | @judyn | Oct 15, 2021

My 39 yr old son is suffering in pain missing work. On the verge of getting fired due to missed work. He filled out online request met ins requirement. And given appt for Jan 2022. Given his symptoms he wants to be seen while he still has ins from his 18yr employer. He is in constant pain. Has been undergoing blood withdrawls weekly for 2 yrs. Has seen Neuro-Gastro- Primary- ruled out MS and a bunch of other things. Cat Scans -Mri-- His hemotologist said he has never seen someone to continue to have symptoms after there iron levels were in normal range. Has been suffering for 2 years.Has signed consent for all tests results from all of his doc to be sent. I will be driving him so my Daughter in law can stay home with all of my Grandkids.Any tips on getting in sooner. Please and thanks

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 15, 2021
In reply to @judyn "My 39 yr old son is suffering in pain missing work. On the verge of getting..." + (show)
@judyn

My 39 yr old son is suffering in pain missing work. On the verge of getting fired due to missed work. He filled out online request met ins requirement. And given appt for Jan 2022. Given his symptoms he wants to be seen while he still has ins from his 18yr employer. He is in constant pain. Has been undergoing blood withdrawls weekly for 2 yrs. Has seen Neuro-Gastro- Primary- ruled out MS and a bunch of other things. Cat Scans -Mri-- His hemotologist said he has never seen someone to continue to have symptoms after there iron levels were in normal range. Has been suffering for 2 years.Has signed consent for all tests results from all of his doc to be sent. I will be driving him so my Daughter in law can stay home with all of my Grandkids.Any tips on getting in sooner. Please and thanks

Jump to this post

Hi @judyn, I can imagine how concerned you are for your son's health and the complications with work absences and the threat of losing insurance. Has your son called Mayo Clinic to let them know about the terms of his insurance and the need to get an appointment sooner? Is he able to get a leave of absence from his work without losing his insurance until his health improves?

REPLY
1 reply
judyn | @judyn | Oct 15, 2021
In reply to @colleenyoung "Hi @judyn, I can imagine how concerned you are for your son's health and the complications..." + (show)
@colleenyoung

Hi @judyn, I can imagine how concerned you are for your son's health and the complications with work absences and the threat of losing insurance. Has your son called Mayo Clinic to let them know about the terms of his insurance and the need to get an appointment sooner? Is he able to get a leave of absence from his work without losing his insurance until his health improves?

Jump to this post

Thanks for responding. He has missed a lot of work over the past few years. They are very short staffed. Last time he called in. His boss said I have a business here to run are you going to come in today or not. He has been hospitalized twice for kidney stone surgery. And once for gallbladder surgery. And the last diagnosis for a neurology consult and work up. We live in Las Vegas and they can fire you for any reason. Since he has given them Many call ins . When he talk to scheduling he was told the next appointments are in January 2022 .

REPLY
madz | @madz | Jul 29, 2023
In reply to @elmtree "The doctor who ordered the test thought my genes mean I could have a lighter version..." + (show)
@elmtree

The doctor who ordered the test thought my genes mean I could have a lighter version of hemochromatosis and he thought I should give blood. My general doctor does not think this is necessary because my ferritin is normal and I don't have any organ damage.

Thanks for the link.

Jump to this post

Hi! Did you ever figure out what this was? Your symptoms sounds the same as mine.. high iron levels, frequent exhaustion, total brain fog, and constant mouth ulcers.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 10, 2023
In reply to @madz "Hi! Did you ever figure out what this was? Your symptoms sounds the same as mine....." + (show)
@madz

Hi! Did you ever figure out what this was? Your symptoms sounds the same as mine.. high iron levels, frequent exhaustion, total brain fog, and constant mouth ulcers.

Jump to this post

Hi @madz, I see that you're searching for answers for symptoms that negatively affect your quality of life. Has hemochromatosis been ruled out for you?

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