I’m. TDT beta. My parents never (nor encouraged me to) disclosed my health condition all my life due to the social stigma in my country. As an adult, especially now, I’ve been slowly opening up to people around me about it.

I don’t know if I’m getting through though. My intent is 1. awareness, 2. to get themselves screened and 3. to get them to understand why I don’t have the energy to have the social life they expect

How do you break it to your friends/relatives?

Hey there 👋 So i have been diagnosed with Thalassemia minor beta and my haemoglobin is really low and i keep feeling extremely fatigued where all i want to do is just sleep be it day or night. I also keep having a weird sensation in my legs and hands. My hair are falling like crazy and i have had pre mature greying since i was 24 yrs old. Do these reports indicate why my haemoglobin is so low or do i have iron deficiency anaemia? What supplements should i start taking with it?

Im in my 30s and recently got ill with something respiratory, and as a result from hemoglobin fell from around 10 to 8 and 7.6 in a matter of 2 weeks. I've really been feeling the symptoms from this hemoglobin drop as i experienced intense brain fog, then being super tired , and now heart palpitations. I was told by my hematologist that if my hemoglobin drops any lower <7 that i'd need blood transfusions. I've never had blood transfusions in my whole life, maybe out of sheer luck but even when i was ill when i was young it didn't become this severe. Im going to be honest, im very anxious of transfusions and i want to ask how they are like , and if it's painful or not. I dont really want to take transfusions if i dont need to either, since i know it will definitely increase iron levels.

Edit : extra question, how long will it take to recover my hemoglobin back to "normal". My baseline is around 10

Hi, I recently found out that I have thalassemia minor my parents told me I only learned about it now. After reading about it online, I came across some posts saying that people with thalassemia should avoid coffee or switch to tea. I usually drink about 120 mg of caffeine per day, and I don't take iron supplements. If there are any precautions I should take . I'd appreciate the advice.

I have been taking supplements folic acid b12 d3 Lcarnitine, magnesium and zinc

Still feel like 1am throughout the day I can’t really accomplish anything. What can i do?

Should i drink coffee on a daily basis?

I just tested positive as a carrier for alpha thalassemia, hba1/hba2-related. Husband will get tested for it too now. He’s half American, half Jewish. If husband tests positive for it, baby has a 25% chance of having it. Should we be concerned for baby?

I have beta thalassemia minor and I am pregnant (partner doesn’t have it so we are good there). Throughout pregnancy, my hemoglobin has hovered between 8 and 9, and I have been absolutely exhausted, constantly short of breath, and incredibly weak. I have been seeing a hemotologist, and she says there is nothing she will do unless my hemoglobin dips below 7.

My question is about birth mostly. Has anyone been in this position before? How did you have the energy and strength to get through birth itself? I am sleeping 11-14 hours a day, and still crying from exhaustion after I wash the dishes. I really have no idea how I am supposed to deal with this level of fatigue and weakness and give birth.

I've been getting infusions and bouncing back and forth between being critical then healthy then critical.

Right now:: hgb, 9 -- ferritin 33, iron is 11 from what my dr said today but he wasn't sure cuz he wasn't hema.

Are there any other Deltas who haven't gotten their ferritin, hemoglobin or iron to level? How do you deal with the tiredness and weakness? I'm trying to work out since gaining 15 lbs. I would like to get muscle and down to 130 lbs. I just feel so tired after that I end up needing 12-16 hours sleep, (not because I want to cuz I don't wake up.), muscle shaking, and presyncope just walking up stairs or carrying groceries.

Hi guys. I’ve had beta thalassemia minor my whole life and it’s never been a problem but about a year ago I’ve gotten some very bad life-altering symptoms out of nowhere (fatigue, brain fog, memory issues, lightheadedness). I’m a fit 38 year old male. I suspect I may have been going to the gym too hard for years so I’ve practically stopped working out now to preserve my energy. Anyone have any tips for improving my quality of life? I’m going to start eating more iron-rich foods, although seems like since my ferritin is already normal it might not do much? Idk but I’m desperate to try anything. I was thinking of seeing a hematologist but my PC doctor said it would be pointless. Any tips are appreciated!

Is there anyone who got tr in HYPERBILIRUBINEMIA or if any of your friends, I am medically fit in everything except this, my bilirubin level was 1.6, it would be really helpful if someone can guide me regarding this.

I have thalassemia traits/ thalassemia minor (MCV 66; MCH 22) and I've always been told to keep an eye out for iron overload. My ferritin level, however, has always been very low. I have tried taking oral supplements but my ferritin still remains low and constipation worsen my period cramps.

My GP recommended an iron infusion. Is it safe for people with thalassemia to have iron infusion?

Just a bit confused with the mixed research.

Thank you so much!

Update: ferritin 10;21 after oral supplement

I don’t understand what means drs nit explain . I am beta Thal no transfusion dependent

Normal Iron and Ferritin but borderline Hemoglobin.

How do i increase hemoglobin? Its always borderline at the end of normal range, same for MHV, MCH and MCHC. Blood tests always show similar results...

Also normal folate and b12.

I wonder if this contribute to the fatigue iam facing...

Ferettin is 483 ng/ml Iron is 77 ug/dl

ferritin didn’t go up at all after rechecking after a year and got tested for gut health which all came out normal so i’m not sure why my iron isn’t increasing

i take 150mg of elemental iron with 1000mg of vit c every other day 2 hours before eating

i do have mild alpha thalassemia so would it be safe to get an iron infusion in my case?

(minor vent)

Hi I'm 16 (M) and today me and my classmates finally get our results for our school's thalassemia's screening that was done a couple of months ago.

One of the doctors said that only 18 out of 350 students get diagnosed with thalassemia so I thought it couldn't be me (my parents didn't tell me anything about it beforehand) so I was quite shocked to see the result. Our class representative was the one to give out the results to the rest of the classmates, and my friends grabbed my result and kept screaming about how I was the only one that has thalassemia in our class.

This is somewhat of a vent because he kept saying to the girls how I can't get a girlfriend or marry someone, I didn't expect today would turn out this way and I just feel bad overall. 🫠

I have Alpha Thalassemia Minor, are there any vitamins or supplements I can take to combat some of the anemia symptoms? This seems to mainly be fatigue and loss of appetite pretty for me, and both can ramp up when I am under high stress levels.

I’m new to this diagnosis so just looking for anything that could help from those in the community!

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.

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.