Elevated Ferratin question

[Deebs1234]

White male, 41yo, 215 pounds, 5'10.  My blood is hypercoagulative (clots too easily), and I have an iron gene mutation that causes my body to retain too much iron.  I have had numerous cases of tests showing "fatty liver," but subsequent MRI's of my liver have been normal.  My doctors' advice has always been to eat less fatty foods, and lose weight.

I just had a bloodtest come back with an elevated ferratin level of 564.  My GP has recommended that I follow up with a blood specialist who I haven't seen in a couple of years to discuss this test.  I believe that the doctor is going to order a phlobotomy (blood draining) to clear out the excess iron.  Before I schedule that appointment however, I have a couple of questions:

1) At the time of my bloodwork, I was just getting over a bad cold.  Could that have contributed to the elevated ferratin  level?

2) I take a multivitamin every day, which (I think) contains iron supplements.  Now I'm reading online that people like me who are prone to high iron levels should not take multivitamins with iron.  So if I cease taking this multivitamin, how long could I wait before I recheck my blood to see if the iron levels have fallen?

Any information I get would be very appreciated.  Thank you!

[aMom21]

The only condition that I have read about that is a result of an iron gene mutation is hemochromatosis.  Hemochromoatosis causes the body to absorb more iron than the average person, as a result there is usually too much iron in the blood and also stored in the organs.  The only way to remove iron is with the use of prescription medication but the preferred method is phlebotomy.  Your body will not rid itself of excess iron on it's own.  This condition should be taken very very seriously as it can be causing silent damage for years.  You should be under the care of a hematologist of hepatologist.

[mikesimon]

You said:  "...and I have an iron gene mutation that causes my body to retain too much iron..."

I know nothing at all about an iron gene mutation. If you are satisfied that is the reason for your elevated ferritin level then perhaps waiting a month would be alright. I have had liver disease so when I see elevated ferritin/iron levels I get concerned. As aMom mentioned hemochromatosis is a serious disorder which can cause liver damage. There are other disorders associated with elevated serum ferritin and I would want to rule those out before I was comfortable with waiting and re-testing. I personally would probably want to see another doctor - either a hematologist or hepatologist - but I haven't seen the rest of your labs. If your liver function tests are normal maybe I am overreacting.

Good luck,
Mike

[Deebs1234]

Thank you Mike and aMom very much for your replies.  

I've been off the multivitamin pill for a few days now.  I guess my next question is: do I wait a few weeks before going to the doctor, under the theory that not taking the vitamins should cause my iron levels to drop, or do I go right away?

My ferratin level of 564 is high, but I don't think it's life-or-death high, right?  My feeling is that I should just stay off the multivitamins for, I don't know, a month or two, then ask for a recheck of my blood before I go to see the doctor, since that's probably what he's going to tell me to do anyway.  

Nothing frustrates me more then taking a half day off from work,  and then paying for a doctor visit, to get instructions that could've just as easily been given out over the phone.  And since I have 3 doctors I have to visit regularly, it's an ongoing experience with me.  

I can't tell you how many times I call the doctor to simply get blood results, only to be told, "the doctor always prefers patients come in to discuss bloodwork in person.  So, okay, I take the time off work, show up to the doctor's office, wait upwards of an hour, only to have the doctor breeze in and say, "your results are fine.  See you next time."  And I have to pay for that visit?  Argh!

So anyway, that's why I'm wondering - could I just wait a few weeks, or even a couple of months, to recheck my iron levels before scheduling a follow-up?

Again, thank you very much for any info you might be able to provide.

[aMom21]

Oh also, absolutely no iron supplements!

[aMom21]

I agree with Mike above that a cold would not impact your ferritin levels.

Have you been diagnosed with hemochromotosis?  If so yes, phlebotomy is the most effective treatment for iron removal.

Take care.

[mikesimon]

I am not a doctor or in the medical profession. I am just a patient with some experience.
I don't believe that your cold had a significant impact on your ferritin level.
If you have high iron levels you are right to avoid iron supplementation. I don't know what effect discontinuing iron will have on your labs. If there is a significant effect I have no idea how long it would take to be reflected in your lab results.
As you mentioned, phlebotomy is one approach to address elevated iron levels. That is the approach I generally see used.

Good luck,
Mike