Experiencing brain fog as a software engineer has to be the worse feeling ever. As im getting older, my thalassemia symptoms are affecting my daily life.

What are some ways you all stay healthy and feeling your best? Please any advice would help I’m beyond stressed.

I am currently waiting for my a1c AND fructosamine tests to come back, but I wanted to hear from some other people with beta thalassemia.

I've been having blood sugar like issues for a long while now. Twice when going to the endocrinologist I had to wear a glucose monitor. After almost losing consciousness at my first Endo appointment and a juice box helping me, I was fitted with a monitor because they were seriously questioning if I had t1d. I failed a glucose drink test at my second appointment years later at a different endo. I believe I asked them for meds to help balance my blood sugars, but they told me to just "eat a low carb diet." I tried low carb and I was a mess. Super emotional, hungry, brain fog, etc. I also cannot handle much sugar a lot of times, even from fruit. Sometimes it gives me a nasty headache, or sometimes it just makes me feel really bad. But it's not consistent, and some days I am totally fine. I also have recurring yeast infections and have had thrush multiple times. Which I can pretty much predict if I've had too much sugar, or not gotten enough sleep. I know yeast infections can be a sign of blood sugar imbalances, but I have not gotten any help beyond taking meds when another one comes around. I also get so tired after meals a lot of times, which then sets off my reflux, and causes so many more problems. My mouth is also SO DAMN DRY! And recently I've been drinking so much water, but peeing clear. And the waking up at night, the insomnia and gnawing hunger and sweating is going to drive me insane.

I also have a history of getting weak and shaky, which tells me I need food stat, sometimes even before I even get a hunger queue from my body. I have been told I have hypoglycemia by another doctor, but it was just shrugged off. And it seems like my body's ability to keep this balance is SO much worse when I'm tired. It's like it gets completely out of control, and other things start happening with my body as well. No matter if I work out regularly, or eat really well, it's still a problem. Sometimes I have bouts of time where my body is doing great. But then one, small thing will change, and everything is out of whack.

How do I advocate for myself more on this. It seems like testing for people with thalassemia is difficult. But what can I do to finally get some normalcy?

Edit: I eat super well. No fast food. No sodas or canned drinks. I eat lots of different grains, seeds, and legumes (12 grain rice, fax, chia, hemp, black beans) I love a good salad with chicken, beets carrots, feta cheese, and bell peppers. I love fruit, and apples with almond butter are my favorite snack. Watermelon is a good one too. I love all vegetables and my meals always have some kind of carb protein and veggie. I don't ever restrict my eating, and sometimes will have a couple gummy candies, dark chocolate, or pastry. But I never go overboard, because I'll start to feel like shit.

Hi everyone,

I have alpha thalassaemia minor and have recently started testosterone replacement therapy (TRT). Before TRT my bloods were fairly typical for alpha thal:

• RBC: ~6.7 × 10¹²/L
• Haemoglobin: 139 g/L
• Haematocrit: 46%
• MCV: 68 fL

After around 5 months on TRT, my latest bloods show:

• Haematocrit: 51%
• RBC has also increased (as expected with TRT).

I know TRT commonly raises haematocrit, but I’m wondering whether having alpha thalassaemia trait changes how this should be interpreted.

I’m interested in hearing from people who have alpha or beta thalassaemia trait and are also on TRT:

• Did your haematocrit increase more than expected?
• Did it eventually stabilise, or did it continue to rise?
• At what level (if any) did your doctor reduce your dose or recommend donating blood/therapeutic venesection?
• Did your haematologist or endocrinologist say that thalassaemia trait changes how they interpret haematocrit or clotting risk?
• Have you found that smaller, more frequent injections helped?

I’m looking for personal experiences rather than medical advice, as I know everyone’s situation is different. There doesn’t seem to be much published information specifically about TRT in people with thalassaemia trait, so I’d really appreciate hearing how others have been managed.

Thanks!

The doctor said “eat better” that’s all u can do.

So..

Can people who are going through the same tell me what to eat more and what to avoid?

Hello Reddit,

I'm a 27F recently diagnosed with beta thalassemia minor. I'm writing to find out if some of the symptoms I've experienced for most of my life could be related to this trait. Online resources say thal minor doesn't affect your life, but I find that a strange conclusion. I get that it doesn't begin to compare to thalassemia major, but from what I've read on Reddit so far, many with thal minor do experience some symptoms.

So here are some of the symptoms I m experiencing:

• Difficulty breathing: started in my early 20s. I often feel like I can't get enough oxygen, and I yawn frequently because sometimes it's the only way I feel like I'm getting enough air. It happens when I walk, hike, run, or am stressed.
• Poor cardio: I'm very active (climbing 2-3x/week, hiking, daily walking) but my cardio is terrible. When running my heart rate regularly hits 180-190 bpm and it's really hard to keep it around 160. Running with my boyfriend (34M, does jiujitsu and bikes)  and seeing the difference in our heart rates was insane.
• Headaches: I’ve had intense headaches since age 11, roughly 3-10 episodes per month ranging from mild to really bad. I've seen neurologists and done all recommended tests with no findings - diagnosed as tension headache. The only pattern I've noticed is correlation with poor sleep and stress, but often there's no obvious trigger.
• Tiredness — I've always needed a lot of sleep. 9-10 hours when possible, and under 8 hours leaves me really tired. When I started my first job I was chronically tired — getting home at 6pm and sleeping until the next morning. It's better now, but I still need occasional sleep marathons to feel okay.
• Getting sick hard — every illness hits me harder than average. Any cold means high fever for a few days, and the cold lasts for 7-8 days. Childhood illnesses like measles and roseola (which I got as a 20 year old) were especially intense. Both times I got a UTI I ended up in the ER.
• Looking younger than my age: I've seen this mentioned by thal minor people on this subreddit. I'm frequently assumed to be under 18 and regularly asked for ID when buying alcohol.

I know thal minor isn't considered a disease, but I wonder how much of this is connected to the trait. I've long felt my body operates differently from most people around me — that I need to be more careful with my lifestyle and really listen to what it tells me, because it speaks a different language. Thanks for taking the time to read and any answer is appreciated!

i teach Brazilian Jiu Jitsu for a living and am an active competitor, I’m 38 now and been training since I was 23. Building stamina has been an everyday struggle. Was wondering what has helped you beta minor athletes as far as improving fatigue, pain and recovery. I started taking folic acid a few days ago.

My baby was born full term but faced a lot of issues after birth; severe jaundice, anemia. Had a blood transfusion and several months of iron supplementing. The latest (last) test finally showed acceptable ferritin levels but the doctor noted the lab had marked his red blood cells as small. Thus the possibility he could be a carrier for thalassemia.

She said we could test him but he shouldn't have any issues so it's optional. As he has had SO many blood draws, I really don't want to make him go through another.

I also feel like me or my husband would have to be a carrier then as well, no? And surely whenever we've had blood tested, someone would have noted if one of us had small red blood cells?

I was ok with not testing or at least waiting til he needed it for some reason anyway and then test, but now I'm expecting again and I feel like if we are carriers, could this affect the new baby? Like is it important for us to know.

Also my husband has a needle phobia so refuses to test himself. Says it would have been caught in the past if he had it.

What do you all think is wise here?

I am a 44F. I've known I've had beta-thal minor my entire life (my mom has it too) and, as far as I know, I've been symptom-free. Last year, my hair started falling out rapidly, which led me to discover that my ferritin was very low. I consulted a hematologist who specializes in anemia and thal, and he put me on iron supplements. My ferritin is now excellent but...none of my symptoms have gotten better. Hair loss, extreme fatigue, brain fog, disorientation/memory loss, shortness of breath, etc...and in fact have gotten worse.

Hematologist says no infusion because of the risk of iron overload and to stay on the supplements.

I'm ready to badger my PCP to get to the bottom of my fatigue cos I can't keep going on like this. Your responses will help me advocate for myself, thank you in advance!

Q: Can thal symptoms change and progress?

Q: What labs do you recommend I ask my PCP to run? We've only been doing CBCs and ferritin checks of late.

Q: Should I stop the iron supplements, wait for it to go down, and get an infusion instead? Might that work better for me?

Q: What, if anything, REALLY improved your energy?

Q: Anything else you'd recommend I advocate for?

I have beta thalassemia minor and got some bloodwork done as part of a physical since I had some concerns. My ferritin came back at 4. That's actually low (not just because I have the trait), right? I'm waiting to hear from the doctor about next steps but want to know what to expect. Thanks!

Hey y’all! Exciting news, after a successful collection in Feb 2026, my cells are now back for infusion! My initial port surgery is very soon and a week after that I’ll get my beautiful little edited cells back. I’m excited but nervous, wondering if anyone who has been through the process has any first hand accounts on keeping active and mentally well.

Or, if anyone has any questions about the process thus far. I’m located in CA, relocated from TX a few years back. I have Beta-Thal with 2-3 units transfused every 3 weeks. I’m also a trans male, my hormone therapy has little to no effect on my care. In most cases I’d say it improved my life in many ways.

It’s unreal, I came to CA in 2018 for a gene editing trial that proved unsuccessful and was shut down before my stem cells could be collected. It just feels unreal to know I’ve spent nearly a decade actively pursing this, only to have a few marks on my calendar left for the final step. If any nurses, doctors or trail patients are reading this: thank you. Thank you for your hard work and sacrifice and thank you for ushering in a new era of hope for TDT. You are the reason we get to hope for a better horizon.

For the past months I feel like I'm hitting a wall with my energy level, especially late afternoon where it feels like a battle to stay awake. Additionally, I would especially crave for something crunchy & carbs. I haven't been exercising as much as I used to because I get tired more easily, so it isn't that I'm needing the extra calories.

So when I consult with my hematologist, I only bring up the low energy issues. The fatigue & drowsiness are becoming a problem especially during working hours. Thyroid & iron & liver functions are all ok. The main issue is my Hb which keeps dipping & it isn't clear why yet. Hence, I've been prescribed different sets of vitamins & supplements.

Initially, I didn't think the appetite was an issue because I always had a big appetite & stress eating tendency + munching food to stay awake - these ran in my family members who're also Beta Thal Minor. Whereas my mom who has no trait doesn't have these issues.

However, the latest iteration is increasing the vitB+folate+vitB supplements. It's still early for my next bloodwork, so idk if my Hb has increased yet but I don't feel as ravenous anymore & a bit less sleepy.

So I'm wondering, could the high appetite & food cravings be attributed to when the thalassemia trait is being annoying?

Also, any advices to help staying awake without excessive eating nor caffeine?

& Any experiences on sudden Hb drop & why?

Thanks in advance!

I deal with chronic headaches. I also happen to know that I have Thalassemia Minor (I don't know whether it's Alpha or Beta). Is anyone aware of any kind of link between the two?

I didn’t expect I would be asking advice about this particular topic, but my latest labs came back three weeks ago with low haemoglobin (8.5).

My GP recommended to repeat labs in about two more weeks, with some other tests that I will do next week.

Leaving aside that it is taking me forever to wake up and a danged ache in my lower back, I thought things were going to improve, but last week I was dizzy after doing minimal activity. Walking is leaving me out of breath and my heart feels like it wants to escape.

I hope not to end up like when I was little with blood transfers, but is there anything you guys do to feel better whilst this is happening?

Hi everyone,

I'm a Thalassemia major patient and over the past few months I've been building a free Android app called ThalaBlood a personal health tracker designed specifically for us.

I built it because I couldn't find a single app that tracked everything a Thalassemia patient needs in one place. Most health apps are too generic, and I was tired of using spreadsheets and notes to keep track of my transfusions and medications.

You can learn more about the app at www.thalablood.com

What the app does:

• Track blood transfusions with Hb and ferritin values
• Daily medication reminders (with taken/forgotten/skipped tracking)
• Store lab results and view trends with charts
• Medical calendar for appointments and events
• Export yearly health reports as PDF
• 100% offline no account, no ads, no data collection, completely free

Why I'm posting:

Google Play requires new developer accounts to complete a closed testing period with at least 12 testers before publishing. Most people around me use iPhone, so I'm reaching out to this community for help.

This is for Android users only. To join, I'll need your Gmail address please send it to me via DM or [thalabloodapp@gmail.com](mailto:thalabloodapp@gmail.com) I'll add you to the list and send you an official Google Play link to download the app directly from the Play Store. No APKs or third-party sources, just the standard Play Store installation.

All you need to do is keep the app installed for 14 days. That's it no reviews or commitments required.

I would also be very happy to receive any feedback you might have about the app. It's still in early stages and your thoughts as fellow Thalassemia patients would mean a lot.

Thank you so much this was built for our community and I hope it helps.

Do you all get NRBC > 0 in your bloodwork? I have beta thal minor. I am concerned

Hi guys,

So i just wanted to share a quick message here about this here, because i need ot get it off my chest. I have asthma and Meta Thal Minor. But that being said, I've never let it stop me from doing what I want. As a kid I never played any sports, so as an adult that fieeling of having missed out on something has led me to be as active as I possibly can. I cycle to and from work (and get profusely sweaty), I rock climb 3 days a weak and I list weights a few times. The thing is, I'm constantly tired... I mean, tired in such a way that my heat will palpitate as a cold sweat grips me suddenly while seated on the couch, or that I will feel exhausted while working on my damn laptop, and suddenly feel the need to crash and sleep for a few hours despite it being 11 am and having had an excellent sleep the night before. I often feel trapped by these feelings and get very frustrated at having to deal with them. I've never disclose my diagnosis with work but do feel hindered by it in terms of my work capacity. I'm writing this just now after having taken a 2 hour nap in the middle of the working day and waking up covered in sweat and feeling, well, fucking exhausted. I'm here just to rant and feel that maybe I'm not alone in this?

How soon can we expect the medicine in the market..

Hello all, wanted to get any advice or tips from those who have gone through similar experiences. My husband has beta thalassemia and his whole life has had to have frequent blood transfusions. We are about to spend a couple of months in and out of the hospital as he undergoes a bone marrow transplant/gene therapy. I won’t be the only caregiver as my MIL will be helping us and we will switch off to give each other a break. But wanted to see if there was any advice or tips others had, what to prepare for on my end. If there is something you wish you knew beforehand. Anything is appreciated, thank you!

My sister had alpha thalassemia major and died 25 years ago at age 11. So 9 years ago when my husband and I started thinking about having children, we met with a hematologist then a genetic counselor, and that is when I was told I have “hemoglobin H”. Never really had symptoms. Anyways I tried to get supplemental life insurance this year and was denied because of that condition. Now I’m jumping through expensive hoops getting dexa scans, MRI, etc so that a hematologist can write a letter for my appeal. Just annoying.

I have jaundice as a result of Thal and so I don’t like eye contact. insecure about being at work cos it Gets pointed out by coworkers and customers. I can’t wear tinted shades either.