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Thalassemia Patients and Friends and thalpal Ā© A. Battaglia 2019





55167 Posts in 5879 Topics by 6159 Members
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This is Thalassemia Patients and Friends,
dedicated to its founder,
Lisa Cammilleri.
(1970-2004)
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Author Topic: What Hemoglobin do you maintain?  (Read 1096 times)
JohnnyBoy53
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« on: March 06, 2019, 09:07:37 PM »

Hello Folks.

In a bit of a pickle. I've been hearing that keeping a hemoglobin above 9 is detrimental for Thal patients. This was the number given at Cooley's Anemia Thal conference, blood cancer research etc etc. I currently stay around 7.5, 9 post transfusion. I've been suggesting to my doc to increase the frequency or volume so I can maintain 9, but they are strongly against it, due to my Liver Iron Concentration being high. Just wanted to get some insight as to what levels you are all maintaining.
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Andy Battaglia
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« Reply #1 on: March 10, 2019, 05:54:25 PM »

I can see why they don't want to increase your Hb with transfusions, even though it lowers quality of life to have a low Hb. Are you working on the iron load? Is your chelation program sufficient? It would be much better if you could reduce the load before taking on more iron.
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Andy

All we are saying is give thals a chance.
JohnnyBoy53
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« Reply #2 on: July 19, 2019, 05:46:53 PM »

Sorry, I forgot about this post and remembered about it after the recent conference. The girlfriend (shes the actual thal patient. Just said I was to make things less confusing) was on combination chelation to get her iron levels lower. We got it down from 2700 to about 1000. She has no Iron in her heart, but her liver iron concentration is high. We were doing well with chelation, but had to stop due to getting pregnant. The plan is to get the LIC checked again after pregnancy to determine how aggressive we need to be in chelation. We weren't able to check the LIC after the aggressive chelation.

In any case, she will see how she feels on current regimen(2 units every 3 weeks) after pregnancy. It is difficult to tell now because her fatigue can be due to pregnancy. If she is still too tired, then we plan to get the iron levels lower and change to 2 units every 2 weeks. 
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Andy Battaglia
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« Reply #3 on: July 27, 2019, 02:26:54 PM »

L-methylfolate and sublingual B-12 can also help with the fatigue.
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Andy

All we are saying is give thals a chance.
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