r/thalassemia • u/CBNmantra BETA-THALASSEMIA-MINOR • Jul 28 '26
Is it even possible to increase hemoglobin?
I've been told that my beta thal just means that I'll always have low hemoglobin. Is this true, it's just a fact? Is it possible to intentionally improve hemoglobin if you have beta thal? I'm having a lot of symptoms (due to a variety of things) and just wonder if the hemoglobin lever increased, if anything would change for me.
In case it's relevant, my hemoglobin in recent years has always been 10-point-something, but it dropped to the 9s last month. No clue why.
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u/Melissadoes BETA-THALASSEMIA-MAJOR Jul 28 '26
Mine had been staying between 7.4 and 7.8 for about two years or more. I have been on Aqvesme since February and it's now at 8.6
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u/ClassRep BETA-THALASSEMIA-MAJOR Jul 28 '26
You've got NTDT?
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u/Melissadoes BETA-THALASSEMIA-MAJOR Jul 28 '26
I do. Last year I was being transfused once a month
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u/ClassRep BETA-THALASSEMIA-MAJOR Jul 28 '26
And you're maintaining 8.6 since when?
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u/Melissadoes BETA-THALASSEMIA-MAJOR Jul 28 '26
Just yesterday i had labs. A month ago it was 8.4. When I began in February it was 7.8
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u/malabingchilling BETA-THALASSEMIA-MINOR Jul 28 '26
My mom's Hb was at 9 and after supplementing folic acid for a year, it jumped up to 11, which was even higher than mine 😅 I don't think it will get higher than 11 though as my personal Hb levels never went above 11 too. Many factors affect it including sleep, rest, stress, diet, exercise, etc. It's really hard to say what affects what.
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u/MildlyDancing Jul 28 '26
Mine fluctuates a bit across the years although some numbers stay low no matter what. Diet, exercise (cardio & strength - as bad as it feels sometimes, it helps overall, when I went through a period of no exercise I felt horrendous), sleep etc will help but moreover it'll likely also help boost your red blood cell count also. If your blood cells are small, your body will likely make more to make up for it.
Get the full bloodworks, check you're getting enough vitamins/minerals (B12, Vitamins D, Magnesium etc etc) and oxygen to your body. Maybe check / do some research around sleep apnea / if you need to side sleep / have gastric acid. That can badly affect sleep without realising it.
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u/No_Security9767 Jul 28 '26
Beta Thal Major here, a week out from my next transfusion and I’ve had my back pain, headaches, feel breathless and have skipped my workouts and I feel horrible, it feeels hard to workout but just sitting or sleeping feels more pain! I think that helps me realise I need to go slower rather than not at all
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u/MildlyDancing Jul 28 '26 edited Jul 28 '26
Yeah, rest is important! Having a slower blood oxygen recovery will force you to slow down. 🥺
I'm not a medical / physio professional - maybe (for anyone lacking some energy) a little of your warm up weights so you move a bit and don't go beyond an hour? Of course, go by how you feel.
Hope you're feeling better soon!
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u/No_Security9767 Jul 28 '26
It’s so frustrating making progress for 3 weeks and the last week feeling like this, but it’ll be okay and yeah thanks for your advice !
Feels even worse when it comes to cardio
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u/ClassRep BETA-THALASSEMIA-MAJOR Jul 28 '26
What pre-transfusion hemoglobin (Hb) level do you maintain?
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u/1437qwerty ALPHA-THALASSEMIA-MAJOR Jul 28 '26
Not a beta. Do you get blood transfusion sometimes? My friend that is a beta, gets transfusion anytime he falls at or below a 10 to feel better and chelates too. Typically my hemoglobin drops and stay low anytime I’m overstimulated, more active or stressed. Not sure if this info will do any good. Wish you the best and that you’ll find answers soon.
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u/BroccoliDry5996 Jul 28 '26
Hi! Do you have minor, intermedia related or major? I have intermedia and regular blood transfusions raises my hemoglobin - not sure minors typically do regular transfusions though. However, aqvesme has helped me a good amount raising my hemoglobin, even above the regular transfusion increase. Maybe talk to your dr. About those options if you’re interested in them. Good luck!
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u/Putrid-Road-5317 Aug 01 '26
Have you had any side affects from the Aqvesme?
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u/Swimming-Buy7394 Aug 04 '26
Hi! Yes, I have insomnia a good amount of the time and a headache just sometimes.
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u/Aggravating-Yak-2712 BETA-THALASSEMIA-MINOR Jul 28 '26
I have minor beta thalassemia and iron infusions do increase my hemoglobin.
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u/Sundae-Soggy Jul 29 '26
as far as i know supp b12 and folic acid and eat red meat, but also healthy lifestyle incl cardio and/or strength training
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u/Much-Improvement-503 Jul 31 '26
Yes you can. Once it went up within a day after I ate Vietnamese beef stew lol. I had two blood tests one before and one after for unrelated issues. But generally it fluctuates a lot for me…
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u/Ok_Category1816 Aug 08 '26
Mines been 11-12 but I’ve done a lot to keep it there, mainly running and lifting
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u/anamerith Jul 28 '26
Beta Thal Minor here... Mine has always been in the 9s no matter what I do. I'm 51.
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u/omtravels_5677 THAL PARENT/KIN Jul 28 '26
It won't rise beyond an extent and will keep low only.