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81
Thalassemia Minor / Re: DNA testing?
« Last post by Andy Battaglia on March 14, 2021, 09:30:47 PM »
I don't know if they've improved, but 23andme typically could tell one was thal minor, but it had trouble identifying the specific mutations. Personally, I have concerns about these companies selling the data they collect.
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Thalassemia Minor / Re: Lab results and where to go from here?
« Last post by Andy Battaglia on March 14, 2021, 09:27:25 PM »
This link has a good review of this issue. The problem is that HbA1C can measure higher or lower due to thal minor, so a different method should be used for diagnosis.
https://www.consultant360.com/articles/when-a1c-unreliable
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Thalassemia Minor / Re: My quest to reduce ferritin
« Last post by Melissa A Tan on March 10, 2021, 05:53:13 AM »
Yay Mart! Good to know that you managed to reduce your ferritin.
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Thalassemia Minor / Re: My quest to reduce ferritin
« Last post by Slade on March 09, 2021, 10:40:32 PM »
I've got some good news regarding my ferritin - it has dropped from 730 to 611 in just 6 weeks! Serum iron has also dropped from 24,6 ot 18 µmol/L and Hb raised from 12,6 to 13,5.
What did I do to achieve this? Absolutely nothing except I stopped taking the supplements.
I have a theory which may explain why this happened - when I got tested the previous time I didn't feel so well and I think I had an episode of more intense hemolysis at that time. I think that when hemolysis is intense a lot of iron is released and this causes the numbers to go up. Later on things get better, new red blood cells are being produced with the existing iron and ferritin drops a little bit. What I can't explain to myself is how I got such high ferritin in the first place. I guess when Hb drops the body thinks it's getting iron deficient and increases absorption from food. I wonder if it's a good idea to switch to a vegetarian diet when I notice signs of more intense hemolysis? Maybe I'll try that next - it may not work but it won't harm I think.
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Hello! I have alpha thal minor and I'm approaching menopause. I've been having joint and muscle pain off and on for the past year and my OBGYN says it's "probably not" related to menopause but admitted she didn't know enough about thalassemia's effects on menopause.  I started taking a multi vitamin but I stopped because I'm assuming the iron in it was making me constipated. I now take a few different vitamins (A, B, D, E, biotin). I've been looking up what vitamins to take and avoid as an alpha thal but there isn't a lot out there. Does anyone have any information or personal experiences? I've noticed that my heart palpitations have increased and I'm not sure why, if it's due to any of the vitamins I'm taking, iron overload or just general anxiety. I'm also considering seeing a hematologist with the hopes they would have more insight about thalassemia's effects on menopause. Thank you!
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Thalassemia Minor / Re: My quest to reduce ferritin
« Last post by Slade on February 23, 2021, 09:06:50 PM »
TonyF,

Unfortunately my hemoglobin is about 12,6 lately. You can't donate if you're under 13,5 and you have to be interviewed by a medic before that (quite possible to notice my pale skin and yellowish sclera).
Even if I get to trick them once or twice what good it will do me?
I asked the doctors for chelation treatment with Exjade or Desferal but they deferred it saying I need to have at least а four-figure ferritin plus an evidence for build up of iron in my organs (i.e on a Ferriscan, etc.)
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Thalassemia Minor / Re: DNA testing?
« Last post by TonyF on February 20, 2021, 10:24:43 PM »
Wow old thread!

Has anyone done the 23andme or similar genetic tests and run them through any of the various sites that given you insights and (some) potential action items?
I suspect there's not much Thal specific, but that would be interesting.
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Thalassemia Minor / Re: My quest to reduce ferritin
« Last post by TonyF on February 20, 2021, 09:53:31 PM »
Slade,
I definitely would NOT advise a DIY phlebotomy you could damage a nerve, maybe you could find a nurse.

How low is your HB? Might is always around 13. The blood donation level is usually 13. Interestingly HB is usually higher in the morning than later in the day, so i donate in the morning so they don't disqualify me for 60 days lol. That was super happy when i discovered that information.

Any how good luck and report back if you make some progress.

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Thalassemia Minor / Re: My quest to reduce ferritin
« Last post by Slade on February 19, 2021, 11:46:31 PM »
Hello TonyF,

Yes, I checked my blood about 3 weeks ago and it would be an understatement to say that the results were discouraging. My ferritin just won't bulge - it measured 730 but what's even worse is that serum iron was 24,6 µmol/L which is probably the highest result I've got so far. On top of that I've got elevated phosphates which made me stop taking the supplements immediately. I need to check my kidneys before I even think of taking any of them again.
I can't argue that high iron (and ferritin) is a bad thing. God knows how much damage it does to my cells and is probably the cause why my body's aging so fast.
Regarding blood donation - I gave it a lot of thought but I'm afraid it may worsen my anemia because my Hb is constantly below limits. They may not even allow me to donate if they check it.
My hematologist doesn't approve therapeutic phlebotomy as a treatment for ferritin either which means I can't get this. So what choice have I got - a DIY blood-letting? Sounds a bit suicidal...  :rotfl  But joking aside, any advice is much appreciated!
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My girl has HbE Alpha II minor and my son is Alpha II minor. Both has low ferritin and the haematologist wants to test for TMPRSS6 gene. The sample has to be sent to a lab in Wisconsin.
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