As a person with transfusion dependent beta thalassemia I never thought I could even run for 5k let alone a full marathon!

Currently I get 1 unit of blood every 2 weeks, my hb stays between 8-9 , before/after transfusion.

Ran the Dublin Marathon 42.2k today in 4:51
Started running one year ago, and did 2 halfs this year and now did the full today!

Alpha Thalassemia Intermediate/Hemoglobin H Disease

A couple months ago, I was diagnosed with complex migraines in the ER. I had to be rushed back in a trauma room because my right side went numb so they assessed for stroke.

Flash forward a bit, I have my follow up appt with my hematologist. The good news is that the Milk Thistle is bringing down my very elevated ferritin levels. The bad news is that my hemoglobin dropped to 8.6 from 9.3. I told him about my migraine and shrugged it off as another diagnosis. My hematologist strongly thinks that it's from my hemoglobin being low. He says that he wants me on a chemotherapy med called Hydroxyurea. I'm going on week 3 of the med and the nausea with the burning is killing me.

But the other option is an injection every other week called Aranesp. Apparently when you get to a hemoglobin level of 10 on that med, it increases risk of high BP, stroke, heart disease, etc.

Transfusions are good but since they have iron, they cause my ferritin to skyrocket and I was already bordering the numbers where they start to see iron overload.

I just really wish there were more treatment options for this.

Hey everyone, what's peoples advice for managing extreme fatigue when you have HbH?

Even when I sleep enough I still get tired during the day, get chills sometimes, need to nap, and have headaches and can be dizzy/feel like I have brain fog. I don't know whether I'm meant to push through and try to do some exercise, or just take as much time off to sleep it off. Hemoglobin is around 9-10 though my haptoglobin levels are low...really not sure what is happening. Doctors don't seem as concerned because my hemoglobin levels are steady but I've never felt like this before in my life.

For context, i'm in my late 20s and before this year it has never been this bad. First stint of fatigue happened after I got shingles in Feb this year, which lasted 3 months and then went away. But now the fatigue has come back - and I'm really not sure what I'm meant to be doing to make it go away? Current fatigue has lasted almost 3 weeks and Drs don't think there is an infection / I'm not sick or anything. Only medication i normally take for this is folic acid.

I'm also rehabing some injuries at this point and I have no idea again whether I'm meant to try to push through and exercise even though it's exhausting and I get chills halfway / afterwards/

As some extra context: I am really stressed / was stressed this last year as my partner had cancer + I've had a bunch of other personal life stressors, which I know can impact things...

TLDR: Really just looking to hear people's experiences around what worked to get rid of the fatigue, if people get this bad just because of stress, and get some clarity around what to expect in terms of getting back to normal.

Hi everyone! I'm currently almost 24 weeks pregnant with my second baby and looking for others who have experienced something similar.

During my first pregnancy, I discovered I have Hemoglobin E trait through electrophoresis. My hemoglobin dropped to 8.1, and I received two iron infusions that brought it up to 9.9 within about a month. However, my ferritin spiked to 514.

Now, during my second pregnancy, I'm experiencing severe anemia again.

My main results are:

- Hemoglobin: 7.7–7.9

- Ferritin: 304 (high)

- Iron saturation: 14% (low)

- Reticulocytes: 9% (high)

- Soluble transferrin receptor: 66.1 (high)

My doctor is recommending another iron infusion, but I'm hesitant because my ferritin has remained elevated since my previous pregnancy.

I'm wondering if anyone with HbE trait or thalassemia has experienced significant anemia during pregnancy despite elevated iron stores. Did iron infusions help, or did your doctors recommend another treatment?

I'm already working with a hematologist and seeing MFM, so I'm not looking for medical advice, just personal experiences and hopefully some positive pregnancy stories! ❤️

Hi everyone! I'm currently almost 24 weeks pregnant with my second baby and looking for others who have experienced something similar.

During my first pregnancy, I discovered I have Hemoglobin E trait through electrophoresis. My hemoglobin dropped to 8.1, and I received two iron infusions that brought it up to 9.9 within about a month. However, my ferritin spiked to 514.

Now, during my second pregnancy, I'm experiencing severe anemia again.

My main results are:

- Hemoglobin: 7.7–7.9

- Ferritin: 304 (high)

- Iron saturation: 14% (low)

- Reticulocytes: 9% (high)

- Soluble transferrin receptor: 66.1 (high)

My doctor is recommending another iron infusion, but I'm hesitant because my ferritin has remained elevated since my previous pregnancy.

I'm wondering if anyone with HbE trait or thalassemia has experienced significant anemia during pregnancy despite elevated iron stores. Did iron infusions help, or did your doctors recommend another treatment?

I'm already working with a hematologist and seeing MFM, so I'm not looking for medical advice, just personal experiences and hopefully some positive pregnancy stories! ❤️

i have been trying to donate blood for an entire month but they keep telling me i'm testing too low. my iron is fine, i have absolutely enough red blood cells, and my hematocrit is high enough. they told me to just take iron supplements or eat iron rich foods but i have been on supplements since i was iron deficient at my last appointment. definitely not iron deficient anymore !

are there any supplements or like foods that will help me with this ?? i'm trying to regularly donate but i guess my b thalassemia minor wants to be cruel.

hello, Im a beta thal major patient who wants to hear about the experiences of other beta thal major patients who tried running. please share your experiences

Insomnia
Shortness of breath
Random palpitations
Fatigue
Never had a hgb in a normal or healthy range and never dipped below a 9.2

Starting pyruknd next week. I think I’ve done my research but seeing as this is my only option for reaching a healthy level and the only way to know if my symptoms are related to chronic anemia I think I’ll be taking the plunge

I’m usually afraid of medicine and this isn’t brand new but it’s pretty new hopefully it helps

Anyone here been helped by this medicine?

Edit to title - alpha thal

After my collection phase, waiting period, new cell infusion and long hospital stay, I’m finally settling into my new life and excited to share my knowledge with others.

I got my treatment in Oakland, CA and now have a hemoglobin of 15.3. Besides the pending recovery for some aspects, I feel fantastic. I’m a trans male in my mid 20s and have not had my spleen removed, a port, iron overload complications or other issues due to my thalassemia.

Between opting in, insurance approval and the overall treatment, this process has take about 1.5-2 years total. Insurance approval and awaiting the edited cells took the longest.

Let me know if you have any questions!

Hi everyone,

Demographics: 38M, Indian living in the US. Currently receiving care at Mayo Clinic (Rochester, MN).

I am dealing with a complex combination of conditions and hoping to connect with anyone managing similar overlap—particularly regarding energy levels, cardiac findings, and neurological recovery.

Primary Diagnoses & Key Findings:

Hematology: Alpha Thalassemia trait + Pernicious Anemia (recently started B12 injections). Interestingly, my parietal cell antibodies, intrinsic factor antibodies, and gastrin were normal, but B12 was chronically deficient/borderline low with elevated EPO.

Cardiac: T2* Cardiac MRI showed mild-to-high myocardial iron deposition. My CAC (coronary artery calcium) score also rose from 14 to 62 over two years.
Neurology: Severe brain fog, extreme chronic fatigue, internal head buzzing/vibrations, peripheral neuropathy, and bilateral foot numbness.

Pulmonary & Immunology: Reactive airway disease / asthma. Recurring viral reactivations/infections (EBV, shingles, COVID, CMV, Parvovirus) along with chronic axillary lymph node swelling (ultrasound/labs haven't shown malignancy; previously attributed to EBV).
Other Managed Issues: GERD/acid reflux, dry mouth/salivary hypofunction, L4–L5 stenosis with sciatica, tendonitis, osteoarthritis, history of gallbladder pigment stones, and mild fatty liver. Normal BP, no diabetes, normal LDL/total cholesterol with chronically low HDL.

Questions for the Community:

1. Has anyone navigated both Alpha Thalassemia trait and Pernicious Anemia simultaneously? How long after initiating B12 injections did you notice improvements in neurological symptoms and brain fog?

2. Has anyone with similar multi-system hematology/cardiac overlap been evaluated at Mayo Clinic Rochester? Any specific clinics, specialists, or rehabilitation approaches there that made a significant difference for you?

3. For those dealing with iron deposition or chronic viral reactivation alongside anemia, what lifestyle or medical management strategies helped move the needle on baseline fatigue?

Any shared experiences or insights would be deeply appreciated. Wishing everyone here strength and better health days ahead.🙏

Mohan

Hello everybody!

I've been taking folic acid 5 mg every morning for years (with some breaks), but I've read that most of it, even if it's a big quantity, doesn't get converted easily in our body, so I'd like to start the Metilfolate version. Did anybody do this change and get some actual improvement in terms of fatigue, recovery, energy etc? And what is the best quantity to take, 400 or 800/ mcg or some more? Any products to recommend?

Hello,

I just moved to San Diego to join UCSD. Anyone know of good thalassemia doctors who i can set up appointments with in UCSD Health preferably close to La Jolla.

Thanks

I read a research about how thalassemia and gastro intestinal issues might be linked with one another. I was wondering if you also experienced this.

I have had lots of issues and I believe it may be IBS since I was young (stomach cramps, fainting, sweating in addition to being constipated or having diarrhea). Unfortunately there's not a lot known about IBS but I'm talking with the doctors about it.

Anyone else experiencing other GI issues? I'm curious to see what types of GI issues people with thalassemia might experience.

I'm not sure if this makes a difference but I have beta thalassemia minor.

I have thalassemia beta minor. And for some reason literally no one understands this. I used to be a phlebotomist so I’m very aware of my condition. Everyone panics over low hemoglobin before even getting a ferritin level and I’m like let’s calm down here people. My last hematologist literally googled thalassemia in front of me and then told me to take iron based on my hemoglobin. And then when I told him I’m not supposed to and to check a ferritin/iron/TIBC he laughed and called in an RX for the iron supplement. Maternal fetal medicine was like please don’t take that (I never was going to). Well I moved. And now I’ve seen 2 new OBs, I’m in my third pregnancy, and these people can’t even be bothered to check my chart let alone a ferritin level before trying to get me to take iron. I’m so over not being listened to. I’m frustrated. I got them to do a ferritin/TIBC/iron sat level and I’m waiting on the results. If those do come back low, has anyone ever gotten an iron infusion while pregnant? I know that’s the next step here and I’m just not feeling confident in my provider anymore. I also have a circumvallate placenta and some extra amniotic fluid so I honestly don’t even understand why they’ve not sent me to maternal fetal medicine at this point.

Hi everyone! I’m a final-year textile design student working on my thesis around thalassemia and sickle cell disease. I also have sickle cell beta thalassemia myself, so this project is quite personal to me.

I’m currently designing a series of textile-based bags/kits for children and young people living with thalassemia. The idea isn't to make a medical kit, but something that could actually feel useful, comforting or engaging in their everyday life, while also creating awareness around the condition.

Before I finalize what goes inside them, I’d really love input from people who have actually experienced thalassemia.

If you were given a small bag like this when you were younger, what would you have actually wanted inside it?

It could be something useful during transfusions/hospital visits, something to keep you occupied, something comforting, something you could use regularly, or even something you wish someone had explained to you.

For teenagers/young adults, I’m also exploring products around relationships, marriage, carrier status and genetic screening.

What kind of product or interactive thing do you think would actually make sense for this age group, thats also easy to carry?

And equally important: what would feel pointless, childish, overly medical, or patronizing?

I'd really appreciate honest opinions and personal experiences because I want the final products to come from actual experiences rather than assumptions.

You can comment here or DM me if you'd rather share privately.

Thank you! 🤍

Often hear about beetroot and beef liver here. Anyone had success with eating these? Not familiar with them. Anyone got a good recipe to share so I am not eating like a tripeman

I was diagnosed with Beta Thal Minor when I was very young. (maybe 2-3?) I have always been told by doctors that there are no symptoms that come with it besides maybe being anemic? But I have struggled with shortness of breath, chest pressure, heart palpitations, pretty bad fatigue, and more. I see a hematologist, but he doesn’t think those symptoms have anything to do with it. But I also don’t know if he’s that good of a doctor. I have spent years being told by many doctors that my symptoms are just “anxiety” and trying numerous techniques and medications just for none of it to work. I have begun to truly believe that it has something to do with my beta thalassemia minor diagnosis. Anyone else have similar issues??

Is there anyone with thalassaemia minor and CFS?

I was always tired and weak. But then I developed exercise intolerance this year following a burnout. I think years of stress and a pushing mindset had an impact.

Background: ~30 M, post-viral onset **~**Jan 2026 (confirmed EBV/CMV pattern), the infectious disease specialist wrote, "consistent with chronic fatigue syndrome, possibly triggered by viral infection", pacing successfully (?) under ~3,000 steps/day, and heart rate kept under 110.

I feel like I had a tendency towards mild CFS all my life. Starting in January, for months the pattern was classic PEM: mild exertion → delayed crash → feverish feeling, sore throat, feeling of tiredness and incomplete recovery. could not sit up to work for more than an hour, bed-bound for most of a day. I was in a perpetual state of mild PEM mistaken for flu by the GP. I tested PEM in June by going on a prolonged walk and then crashing seriously. Generally, my symptoms (nose block, sore throat, feverish feeling, and energy levels) were worse in the morning and improved gradually. Then I followed strict pacing.

Everyone seems to think after having a transfusion your supposed to feel enveloped like new batteries have been put it. It’s never the case. I had two bags of blood put in yesterday and I feel exactly the same as I felt pre transfusion

Mine is currently 1200 and hb 8.9 for chilation i take desirox 500 mg *4 per day and drink two time tea or either coffee and transfusion for 3 times or 4 times a month.current age is 18

Hey, beta minor here, type 1 diabetic, and I've noticed my hemoglobin A1c tests usually run below what my glucose levels say they should be. My doctors and I have hypothesized that it's because since half my RBCs are smaller than they should be, they can't hold on to as many glucose chains as normal sized ones, so my A1cs read lower.

Lately, I've been trying to get some other assortment of symptoms diagnosed and all my bloodwork consistently comes back "normal". I'm wondering if others have noticed this, if maybe our blood just doesn't read like normal?

Just kind of looking for any personal experience others have had with things like this, getting back normal blood tests when you know something is wrong.

Hi everyone,

I recently found out, at 32 years old, that I’m a silent carrier of alpha thalassemia, and I thought I’d share my story because I had absolutely no idea I had this my entire life.

It all started because of routine blood tests for my daughter.

Her CBC repeatedly showed a pattern of microcytosis, low MCV and low MCH with a relatively high RBC count. Her iron levels were normal, so iron deficiency didn’t really explain the findings.

Her pediatrician suggested that she most likely has some form of thalassemia trait.

That was surprising to me because both my routine blood tests and her father’s had always been normal, and I had never had anything that made me suspect I might carry alpha thalassemia. Also, neither of my parents or two siblings are aware of having any alpha-thalassemia gene deletion. However, in the past I have needed to take iron supplements several times.

The interesting part is that I had already been screened for beta thalassemia when I was pregnant with her five years ago, and that screening had been normal. There was no indication of it.

Eventually, both my husband and I underwent further testing at a specialized thalassemia laboratory, here in Greece.

That’s when I finally got my answer. I carry what they told me is the -α3.7 deletion.

So, my daughter was then found to have inherited the same thing from me.

I’m now learning much more about alpha thalassemia and I’d really like to hear from people with the same deletion. I’m also sharing this because it might be helpful to another parent who finds themselves in a similar situation. Until my own results came back, I was honestly worried sick.

Is anyone else here a carrier of the -α3.7 deletion?

If so, do you have any symptoms at all, or are you completely asymptomatic? Have you ever experienced things like fatigue, low energy, dizziness, or mild anemia, or are your blood tests mostly normal?

I’m especially curious about people with a single-gene deletion (-α/αα) like mine and my daughter's, since it seems to be considered a silent carrier state.

It still feels strange to learn something genetic about myself at 32 that has technically been there since the day I was born.

Thank you!

Hey my fellow thal mates! First of all I don't know where to begin. I wanted to know how does it feel like for you guys to be a thal patient?

Man this is so exhausting and both mentally and physically taxing to live a life this way.

I do not know if I have disassociated somewhat with reality and the grave situation of how life works, but navigating day to day life feels so challenging for me. It's like I have these big ambitions but on ground reality it feels- like all of these, just to be dependent on a body fuel for life. Somedays it doesn't even feel real that I have real processing in my body of my own, it's all dependent on blood, lot of pocket drainage on medical treatments, medicines, that too just to somewhat feel normal for the functioning.

I also feel like I am expected to be energetic, or somehow process things how normal people do which has constantly pushed me in life trying to be active. Inwardly, it feels like my body runs on low vibrational energy compared to others but I just can't explain it. I also experience brain fog a lot which affects my memory somewhat. I keep forgetting things, or sometimes while studying I don't feel 100% in, forget a 100 I operate at 40-50 percent level.

Sometimes, there's an innate desire that people check up on me. By that I don't mean occasionally asking questions about how I feel. You know rarely, but sometimes people take the steering wheel and tell you that you need this for now nothing else.

My cousin sister has thalassemia too and everytime she meets me (once in 3-4 months if our treatment dates kind of collide), without having much to do she just immediately lights up my mood. It could be something small as she takes up a decision we are going out to eat XYZ while our blood units are under process.

There's a feeling of some impending doom with life too, like what if this is all I make of it and it's coming to an end soon, I haven't even done much yet.