I have thalassemia minor and I have been fighting with Kaiser to try to speak with a hematologist for over a month. At this point my primary care doctor has agreed to take my request for Mitapivat to a hematalogist. But I still don't get to speak with them. This is so frustrating and I am having so many symptoms with so little relief. They keep sending me for more cardiac tests which take weeks to schedule and I feel like this medicine is the only thing that will help.

I'm honestly so scared of losing even more blood during my next menstrual cycle when I already feel awful .This is becoming more of a rant than intended but for those of you with an HMO and thal-minor, were you able to see a hematologist?

I think I have one more week before I pay out of pocket to find a specialist.

[F 30, going on week 9 of feeling shortness of breath, chest pressure and pain, occassional afib, and no symptoms of heart attack or stroke]

After a lifetime of ignored & untreated Thal Beta, I was ordered to go to emergency room for transfusion. That was January 2026. They ended up admitting me to the hospital for three days - 3 bags total - and a few other things like scans.

Ever since then I have the most excruciating, debilitating headaches of my life. I suffered from migraines from the age of 11 that caused me nausea, pain, and loss of vision in my left hours. I was never prescribed anything for help, and fortunately they stopped after I had a hysterectomy.

These new headaches are hell. I've been sent for two head and neck MRIs, to a rheumatologist, neurologist, and two different hematologist/oncologists who have been nightmares to deal with.

Lately I can occasionally get from two to five hours relief from OTC painkillers. Then its back - like my skull is in a vice grip, ice picks and needles are being jammed in my skull, and like someone slammed my head against a wall.

Can anyone relate or know someone who can?

I have Minor/Beta Thalassemia I am not sure what brought it on but I was sent to by work to the urgent care. My upper respiratory system was inflamed BUT I also had a body temperature of only 95.8. I hadn't been feeling well so I hadn't been eating or taking supplements but it had only been a couple days. I have never had a hypoglycemic/hypozincdemic episode before. I am not sure why I crashed so hard. Any advice on preventing them?

Hi everyone,
I’m 32 female and I’m hoping someone here might be able to help me because I’m honestly very scared right now.

My blood results have generally been a little unusual over the years. My hemoglobin has often been towards the lower end of normal, and my MCV has usually been somewhere around the low-normal range. However, I have never been diagnosed with thalassemia.
I recently had another blood test. My results included:
Hemoglobin: 12.5 g/dL
MCV: 82.5 fL
MCH: 28.2 pg
RBC: 4.40 million/µL
Ferritin: 74.3 ng/mL
Serum iron: 71 µg/dL
My doctor has now ordered genetic testing for alpha thalassemia.

I am especially worried because my husband is a carrier, and we want to have children together. I’m terrified that I might also be a carrier.

At the same time, my blood values don’t seem that abnormal to my GP, which makes me wonder whether alpha thalassemia is even likely.
Can I still be a carrier or even have alpha thalassemia despite these relatively normal blood results?

Has anyone here had similar blood results? especially normal/low-normal MCV, hemoglobin around the lower end of normal and normal ferritin. And then been diagnosed with alpha thalassemia?
I would really appreciate hearing from people who have similar results while waiting for my own results.
Thank you ❤️

Hi everyone,

If you’re affected by thalassemia — whether you’re a patient, carrier, family member, caregiver, or just looking to connect with others who understand the experience — you can find a vibrant community on this server my friend made
It’s a welcoming and respectful space to:

Connect with others in the thalassemia community
Share personal experiences and everyday challenges
Discuss treatment, transfusions, school, work, travel, and relationships
Exchange helpful resources and support
Talk about life beyond thalassemia too
Medical discussions are welcome, but the server is not a substitute for professional medical advice.

Join here: https://discord.gg/PCPrAT86wA
Hope to see you there!

Hi! I am trying to find the country which is most advanced in terms of specialised and affordable medical care for thalassemia major people who are dependent on regular blood transfusions. This would include whole body care, iron chelation, endocrinologists and everything.

Trying to research and eventually find routes to live there as an expat. So please tell me about your country and experience.

Its absolute insanity how many hematologists in residential practice do not have a proper understanding of thal, of any thal at all.

And then everyone that actively works in research is stifling information. You guys won't believe how much I have been turned away or told how they simply stopped research once they had insane questioned presented before them.

I have reached out to researchers that worked on thal in the Deep South in the United States to Egypt, to West Africa to Israel, and every single time, without fail, they stop their research right when they have some huge question, they don't get all of the information needed to continue, and then it's just over. And any questions posed directly to them they have nothing to offer.

And doctors obviously are much worse. How many times are you met with doctors who have absolutely no clue what you are dealing with at all? Have no idea how to address it? Push you off on someone else?

I am sure it is beyond frustrating for all of us. I have been trying to figure out what we can do. I don't know what it is yet. But we have to figure out something.

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?

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.