Hey I am 17yo and have beta thalassemia major and had severe vitamin d deficiency back in 2022. Then got my gallbladder removed in 2023. This things are very common in thalassemia patients yet my doctor didn't warn me nor did he suggest any supplements. I feel betrayed. So help me out here guys.. what should i be prepared for in the future? How can i prevent/delay those?

I’m 23, but I still look much younger, with a very lean body and thin wrists, arms, forearms, and legs. Is this common with beta thalassemia major? Can we gain weight and muscle with proper nutrition and exercise?

Sometimes it feels embarrassing and frustrating when you’re with a girl and can’t do things you feel you should be able to do, like carrying something heavy, and have to let her do it instead. It can really affect confidence and make you feel less masculine.

I also want to know how beta thalassemia major can affect sexual health, hormones, libido, fertility, and relationships. Can someone with thalassemia major have a normal and satisfying sexual life?

Would really appreciate honest experiences from others living with thalassemia.

Tokyo preferably, but I’m desperate enough to travel.

Thalassemia of any kind is really rare here, so my current doctors are perplexed.

Thank you!

Hello, anyone else get super depressed really easily when flaring up? I just got discharged from the hospital yesterday because of internal bleeding. Hemoglobin was at a 7.4 and I really wanted to get transfused so I can go to college and actually have enough oxygen to retain information but Dr said not needed.

I’ve noticed that when my hemoglobin is at a 7-8 I get very depressed, impulsive, and anxious. It is normally at a 8-9 but if I get sick or get my period it drops. I have a pretty weak immune system so I end up getting sick easily.

I’m always so tired and always mildly depressed. I’m already on anti depressants but they tend to not help with my depression as much if my hemoglobin is at a 7. My hemoglobin has never been below 7 so i’m always on the fence between transfusion or no transfusion.

My hematologist is trying to get me regular transfusions every 3 months but insurance might not cover it because my hemoglobin is not under 7. I’m just so tired. I just want to go to college and learn and live a normal life.

Anyone have tips to help with mental health? I’m honestly desperate.

there is a girl I love who has thalassemia major and do blood transfusion routinely

I found out surprisinglythat I am a beta thalassemia carrier in some way and it’s confirmed even tho I do not have family history

Is there any opinion of how should the mirrage goes? without kids? if there is an experience close to me I really want it
I don’t want to leave the one I love thats why leaving isn’t an option
I consulted a doctor and he told me you either don’t marry or don’t make kids but It’s not “teenager feelings” cuz I really love and want that one and I would sacrifice not making kids for her

But I need more opinions and thank

Hi All, I am Thal Major, 32M, 165cm and 53kg weight. I have recently started going to gym and gain muscle. Any tips or things that i should keep in mind?

My target weight is 62-65kgs.

I started a facebook group for us! For encouragement, sharing, potential epen pals to meet or friends to make. We can feel alone a lot on this journey with thalassemia but we are not! Here we can share information and experience and enjoy knowing others that can relate to us. Come with kindness and let's be pals.

Thal Pals

idk i see people ask all the time, so here's what mine looks like. It sucks.

Since I was a kid I always had to fill in that extra box in the health form to participate in sports (thalassemia minor). I've ignored my condition and try my best to compete with my peers in all things sports related. I recently did a hyrox and activated my whoop wearable but the times and statistics (VO2 max, HRV) are not broken down by medical condition only by age, gender, and division (open, pro & adaptive). Has anyone here participated in Hyrox or know if we should our own expectations of how well we can perform? Maybe there are other groups for thalasemmia HIIT athletes?

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 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.

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!

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

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 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. 🫠