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Author Topic: Quality of life is suffering but hematologist can't transfuse until sub 8 g/L  (Read 162 times)
hazel_frenzi_HbH
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« on: August 11, 2017, 01:04:23 PM »

I wanted to know others with HbH can help me out with this dilemma. My hematologist won't transfuse until low 7s because of my iron and he thinks my baseline is at 8-9. I don't think my baseline is at 8-9 because its been higher before. I was a 9.6 when my PC put me on iron pills before I switched PC. I'm not use to this level of fatigue and my standard of living has dramaticly dropped. I'm having a difficult time sleeping when my Hgb hit sub 8.5 and he doesn't recommend I take the vitamins on here (or start out low) because of vitamin overdose.

I feel as if I'm backed in a corner because I'm constantly in emotional and physical pain and fatigue. At what levels are your hematologist transfusing and any advice on how I can improve my standard of living?
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Andy
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« Reply #1 on: August 11, 2017, 09:03:15 PM »

I don't think many with HbH transfuse regularly. The most important nutrient for alpha thals is folate. Iron isn't a good idea as a supplement, because when your Hb is low, your body will absorb more iron than needed.
You should be on folate. If your doctor disagrees, he is disagreeing with the single universal recommendation for HbH, folate. Folate is needed to build red blood cells, RBC's and unlike iron, it is quickly eliminated from the body because it is water soluble, so it needs to be replenished regularly. Your bone marrow is overactive, trying to compensate for the low Hb, and you need to provide folate to keep up with the demands of this process. And it should be a therapeutic dose of at east 2-5 mg daily.
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hazel_frenzi_HbH
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« Reply #2 on: August 11, 2017, 09:27:49 PM »

Andy,

I am on folic acid -3mg-. He wasn't disagreeing but telling me to be careful with the B Complex, Mg, Ca, and Zn.

What can I do to bring my Hgb back to the previous range? It seemed to have drop over a two year period from 10ish to 8. I was put on iron pills by my primary care doctor, not my hematologist. I stopped taking the iron pills and switched doctors after I saw I wasn't any better (3 mo). It wasn't until I saw the hematologist and he ran a lot of tests that confirmed HbH disease. I'm not used to a Hgb of 8-9 and I don't want more transfusions either, but I am worry about working and attending graduate school when I'm this fatigue. I don't know how people function with Hgb 8-9, but I can't and I don't want to push back graduate school. I still need to work once my summer pays stop (I resigned as a teacher).
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Andy
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« Reply #3 on: August 14, 2017, 07:38:58 PM »

I would suggest switching to L-methylfolate instead of folic acid. Magnesium and L-carnitine can both help extend the lives of red blood cells.
Make sure you are aware of the potential for favism in HbH patients. It's named after fava beans, because the broad beans can cause hemolysis, the early breakdown of RBC's. There may be other foods that can cause this in HbH. There are also many types of chemical fumes and odors that have been reported as causing hemolysis in alpha thals. Exposure to many chemical fumes can cause a sudden drop in Hb. Review the post at http://www.thalassemiapatientsandfriends.com/index.php/topic,3410.msg34830.html#msg34830 and avoid chemical fumes of all sorts as much as possible. This includes synthetic scents used is detergents and perfumes. Even cigarette smoke can cause it in some people. Avoid any medication that contains sulfur. You can check Wikipedia to see the chemical structure of drugs. If you see an S in the molecule, don't use that med.
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Andy

All we are saying is give thals a chance.
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