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uttanutta
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« on: May 15, 2018, 06:00:29 PM »

hi i was just wondering if anyone else has problems keeping up iron levels?Im currently on Ferrograd 325mg 2x daily but still low iron and booked in for yet another infusion which seems to be needed every 3months. Any thoughts?
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cassandra
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« Reply #1 on: May 16, 2018, 03:11:47 PM »

I don't think I've ever not had problems with iron. I've had reasonably stable iron, and ferritin levels for 18 yrs on D with Venofer, but since a few years the learned ones have been messing about with different types of more expensive forms of IV iron. I hope to go back to Venofer soon.
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I started out with nothing and I still have most of it left

1983 high proteinloss in urine, chemo, stroke,coma, dialysis
1984 double nephrectomy
1985 transplant from dad
1998 lost dads kidney, start PD
2003 peritineum burst, back to hemo
2012 start Nxstage home hemo
       still on waitinglist, still ok I think
Charlie B53
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« Reply #2 on: May 17, 2018, 08:11:44 AM »


Clinic adds Iiron to my treatment almost monthly.

I used to take an iron supplement twice daily but it never seemed to make much difference.

There is a HUGE difference in how well the body takes in the different forms of iron.  Pills, not so well.  Natural food stuffs are the best but some of those also contain things we may not care for.  Like Liver.  Personally I like it, IF I am the one that cooks it.  And then it has to be Fresh, never frozen.  It really does make a huge difference as freezing tends to rupture the cell walls contributing to it cooking firmer instead of remaining nice and tender, cut it with a fork kind of tender.

Alas, it is considered an 'organ meat' and restricted for those of us that have higher cholesterol. So we are told we shouldn't have it.
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GA_DAWG
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« Reply #3 on: May 17, 2018, 09:03:23 AM »

Can't do the liver. Not beef, chicken, or any other. Another thing that contains high levels of iron we cannot have are leafy greens, like spinach, collards, turnips and kale. I get iron once a week through the machine.
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uttanutta
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« Reply #4 on: May 17, 2018, 08:27:00 PM »

Hi guys thanks for the replies.Just a quick question when you say they add iron to your treatment does that mean your on hemo? I do PD. And as for food why is it everything i like is not good for me???I miss all the vege and nuts and i tend to knibble a bit more cheese and chocolate then i meant to.  ::)
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LoneHighway
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« Reply #5 on: May 17, 2018, 10:50:20 PM »

See if you can get on the phos binder Auryxia. Itís iron based and since I started on it Iíve not needed any more iron infusions. Expensive though, if you have to pay any for your meds.
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Paul
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« Reply #6 on: May 18, 2018, 11:34:50 AM »

Just a quick question when you say they add iron to your treatment does that mean your on hemo?

In my case, yes. They put it in through the machine once a month. However I take iron tablets in between times.
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http://ihatedialysis.com/forum/index.php?topic=34288.0 (Click Here to go there.)
Charlie B53
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« Reply #7 on: May 20, 2018, 01:31:30 PM »

........ And as for food why is it everything i like is not good for me???........

Seems to me that all the Dr's are taught in school to tell us EVERYTHING we like we shouldn't have!

The years I was on PD I thought myself very fortunate as my diet and fluids were NOT limited at all.  Other than I was very over-weight and shouldn't bee having perhaps so much.

My PD Team were all the time telling me that I needed to eat MORE potassium rich foods as I was needing to take 60 units a days of supplement.

There is no comparing the dietary freedom of PD with all the restrictions were have on Hemo.  Making the change to Hemo requires a HUGE change in eating habits.
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GA_DAWG
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« Reply #8 on: May 23, 2018, 06:57:38 PM »

I have to admit though, that it is nice when my wife, who is diabetic, tries to tell me about whole grain bread, and I can honestly say it is against my diet. Or brown rice.
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Charlie B53
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« Reply #9 on: May 23, 2018, 07:44:39 PM »


While on PD I would get IV Iron sometimes at my monthly office meeting.

We don't eat white bread.  I know we are told that wheat isn't recommended, but that moderation thing applies.  We CAN have some of these thigns, IF we take our binders and do not eat too much or too often.  Pretty much the same with rice. within limits.
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