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  #1  
Old Wed Oct 30, 2013, 11:25 AM
Lbrown Lbrown is offline
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HGB A1C in someone transfusion-dependent

Hi there,

I just had a battery of tests with an internist, who pronounced me pretty healthy other than the hematology problem. This included abdominal ultrasounds and an ECG for iron overload. I've been getting transfusions for more than 4 years and everything came back normal.

Except my HGB A1C which came back as 6.5% which is diabetic. The dr didn't mention it during my appt and I didn't know about it until I was looking at my results when I got home.

I read that blood is collected along with some solution that contains dextrose. Would this have affected my reading? I am not saying my diet is perfect, but I have been gluten free for 5 months and ate organic veggies (and lots of them) all summer, and I also try to eat organic local meat, and almost no processed foods.

Thanks,
Deb
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Old Wed Oct 30, 2013, 12:29 PM
Mseth Mseth is offline
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Hi Lbrown, its great that your test results were good, you must be relieved. Your healthy diet must play a big role in ensuring this.
I am afraid I do not have an understanding of HGB A1C to answer your query but i have a question for you - since you mention transfusions for 4 years, and no iron overload in your test results, do you take a chelation drug? or is it that even without chelation, you do not have iron overload?
My mother is transfusion dependent from April this year and I am worried that she will have to start chelation soon. I am hoping to convince her to go gluten free for a month to see if her counts improve.
Thanks.
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Mother age 79, dx MDS RCMD low risk del 20q April 2013, no response to EPO, Danazol. pRBC tx dependent - 2 units every 3-4 weeks, exjade Dec 2013 - Mar2014, restarted Dec 2014
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Old Wed Oct 30, 2013, 12:54 PM
Lbrown Lbrown is offline
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Hi Mseth,

Yes I have been taking exjade on and off for 4 years. I am supposed to take 2000 mg a day but lately have been taking 1500 mg a day. I also went months without taking any last winter. Currently my ferritin is really high, around 2000, but for a long time it went down to around 1000 and stayed there even with no exjade. I know ferritin is also a marker of inflammation and one time when I had the flu it went to 4200 but was back down to around 1200 the next test.

I went strict gluten free on May 25, and my hemoglobin drops have been getting smaller, so I am encouraged. I have noticed about a 4 - 5 week time lag in quitting gluten and having it show up in my counts, so a month may not be long enough. I also avoid oats, barley and rye. I had what I think was dermatitis herpetiformis (the celiac rash) which went away as soon as I quit gluten (within about the first 2 weeks), but "avoiding wheat" wasn't good enough to clear it up, I had to get strict about it and read labels.

Deb
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Old Wed Oct 30, 2013, 06:47 PM
Chirley Chirley is offline
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Deb, a Hb A1c is more a long term diabetes control test than a short term variable test like blood glucose.

I'd go to my PCP and ask them to follow up on the test. Don't forget that iron can build up in the pancreas as well.

It's probably just a glitch but best to be sure.
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Old Thu Oct 31, 2013, 12:40 PM
Mseth Mseth is offline
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Quote:
Originally Posted by Lbrown View Post
I went strict gluten free on May 25, and my hemoglobin drops have been getting smaller, so I am encouraged.
Hi LBrown,

Thanks for your reply.

Going gluten free is a small price to pay if it helps the Hb. Do keep us posted.

Stay well!!
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Mother age 79, dx MDS RCMD low risk del 20q April 2013, no response to EPO, Danazol. pRBC tx dependent - 2 units every 3-4 weeks, exjade Dec 2013 - Mar2014, restarted Dec 2014
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  #6  
Old Thu Oct 31, 2013, 12:48 PM
Lbrown Lbrown is offline
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Yes, it is a very small price, I agree.

Thanks,
Deb
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Old Thu Oct 31, 2013, 01:58 PM
Marlene Marlene is offline
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I really think the iron messes with the entire endocrine system. I understand the pancreas is more sensitive. Even though they say it takes 10 years before you see damage, I think that applies to those with gradual accumulation versus the major amounts accumulated via transfusions.

I know that the more iron John got rid off, the better everything worked.
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Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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Old Mon Nov 4, 2013, 12:39 PM
Lbrown Lbrown is offline
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Interesting Marlene. I wonder about that too. My doctor said he wasn't worried but didn't say why.

Thanks,
Deb
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