r/thalassemia

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.

I'm 21M thal major and I'm constantly facing canker sores (aphthous stomatitis). I'm taking deferasirox and deferiprone for iron chelation. But after every week, canker sores (aphthous stomatitis) are formed in my mouth. They usually take 1 to 2 weeks to get resolved but when the previous ones vanish new canker sores (aphthous stomatitis) appear in the mouth. They are very irritating and I'm unable to eat anything. They cause immense pain. Kindly guide me what to do as I'm constantly facing this issue. They dont stop. I guess there might be a gap of one week and after that sores appear again. Kindly guide me what to do and if its normal or not. Is any one of you also facing this issue???

a generic Chesty cough for over three weeks. Not something that warrants a Gp appointment. During the day not so bad but early mornings and during the night it’s really bad. coughing phlem. I overheat and have a fan on. HeIp pls. I think I have a weak immune system I should have recovered by now.

Hi there! I am a thalassemia beta carrier and 30 weeks pregnant. My blood work came back 2 weeks ago and showed that my iron levels had dropped slightly. I then took a ferritin test, results pending.

I'm pretty concerned because I was told my whole life by my mother (also a carrier) to NEVER take iron supplements, only folic acid/methylfolate. The hospital however said that if I do have an iron deficiency, and my ferritin test comes back low, I should take iron pills. What does this community think? Was my mother giving me wrong advice this whole time? Can I just take beef liver supplements instead?

PS. Is being a carrier = having thalassemia beta minor?

Thank you!

I have been diagnosed with thalassemia B minor. ( I’m sorry I still don’t know proper terminology I’ve only known it as Minor until recent doctors appointments) but I never really pass out like people normally do. I’ll feel it coming and if I try to fight it the little black dots will cover my eyes till I can’t see anything anymore and my hearing will go and then I’ll actually pass out it’s about a 5 minute process at most. I tried to explain this to the doctor and they said It wasn’t passing out but then wtf is it then you know what I mean? Does anyone else experience this too?

Has anyone’s symptoms gotten worse because of the heatwave?

I have got constant headaches for the past 10 days now….

Always had ferritin around 400-600 (at its worst 2000 for a period of like 2 months). Am 27 in Australia. I would like to have a child as a female thal major but despite my ferritin being low I already developed hypothyroidism and hypogonadism and have suspected insulin resistance (borderline). Past MRIs were fine

Am I just doomed to have other organs fail down the track? I would like to have a child soon and I heard I will be transfused so much more often and I’m worried if this just means that after my pregnancy I am just doomed to have some other issue whether it be osteoporosis or cardiac issues from the increased amount of transfusions.

Can I just die from all these things …. Please help a severely complicated patient.

I have always suffered from growth issues, and definitely, one of them is that I do not menstruate. My doctor referred me to a gynecologist (Im 25 years old). She prescribed some medications and injections, and I started having periods, but I hated it and my mood became corrupted most of the time. I stopped taking the medications after a year. Nothing changed regarding the LH and FSH hormones; they remained as the gynecologist described them: 'the hormones of an 8-year-old child.' It has been a year since I stopped, and definitely, during this entire year, I haven't menstruated even once. My question is: can I stay like this for the rest of my life? I never think about having children, so I see nothing in menstruation except pain and inconvenience... Are there any other health risks that might affect me if I remain without hormone therapy?"

Beta thal minor here. I play badminton once a week 2 hours each time take break in between every 15 minutes. Everytime I play I get dizzy and if i play too hard i puke and lose my eye sight and also get headache. Anyone else struggling to do simple sports? Should I stop doing exercise?

​Hi everyone,

​I wanted to share about something we often overlook in our routine checkups: audiology tests.

​To give some background, I’ve been on iron chelation therapy for almost my entire life. I started Desferal when I was 5 years old, eventually transitioned to Exjade, and I am currently taking Jadenu.

​Recently, out of nowhere, I developed a continuous, frustrating ringing in my ears (tinnitus). I went to an ENT and had a proper hearing test done. The results showed that I have high-frequency sensorineural hearing loss, specifically targeting the 4000-6000 Hz range.

​My doctor suspects that this is a cumulative ototoxic (ear-damaging) effect from decades of heavy iron chelation therapy especially from Desferal. Basically, the microscopic hair cells in my inner ear got exhausted and damaged over the years from the chemical load, and now they are generating this constant ringing as a "false alarm."

​To manage the tinnitus and save the remaining cells, I am now on a strict protocol using trimetazidine combined with a natural supplement to force more blood flow and oxygen into my inner ear capillaries. I'm also currently researching premium hearing aids specifically for neurological tinnitus masking. It is incredibly distracting, especially when I'm trying to do deep, focused work at my computer.

​If you have been on Desferal in the past or any other chelators for a long time, please do NOT skip your annual hearing tests. High-frequency hearing loss is sneaky, you don't realize you're losing it until the tinnitus kicks in. Catching those frequency drops early is crucial. Stay healthy...

I have just been diagnosed with thal minor and I feel like so much now makes sense.

I was (mis)diagnosed with anaemia when younger, due to dizzy spells which I still sometimes suffer with.

And despite being a very sporty kid, I now suffer with extreme fatigue and difficulty getting out of bed in the morning.

I have also always been absolutely destroyed by the flu/colds which always last for weeks, with much harsher symptoms than the other people around me. Is this a confirmed issue with thal minor?

I've also read posts here about brain fog. This is something I relate to deeply. My memory is terrible and I'm constantly confused and unable to find the words that I'm looking for. I attributed this to ADHD but could it be a thal symptom?

I'm also short, which comes from my mother who in hindsight almost certainly has the same issue. There seems to be a lack of consensus on whether thal minor contributes to height/development issues.

Anyway, just a post to say that it's all clicking into place. Any comments or advice on treatments would be welcome too.

I'm 21M thal major and I'm in my university's last year. I have noticed that I'm getting angrier day by day. My height is 5ft and everyone who sees me mocks me. Yesterday, a security guard jocked about my height when I parked my car and I got extremely enraged and we got indulged into a tense conversation. Moreover, I am facing this issue very often now a days. Whoever says anything about me, I take it too personal and start to feel about it and retaliate and reply harshly. This just has become a routine now and I'm fed up of this. If I have not said anything to anyone and have not tried to even tease anyone then why is every other person teasing me??? Now, at times, I seriously think that what have I even achieved in 21 years of my life. Still struggling in my academic life to become a bureaucrat, struggling socially, facing everyone's unjust prejudices and criticism, having a crush on somebody whom I love from bottom of my heart but unable to achieve her as I know that I am way behind her in every aspect of life. What am I even living for?? Why am I even living!! I want to marry her but I just can't because I know that she's a princess but I'm just nauseatingly miserable. Moreover, everytime I get my cbc done, my white blood cells are deranged. I don't know why is it so.., getting transfusion every week is hectic and I don't even know what to do or how to cope up with my anger which is due to my helpless and hopeless situation. I have just become too depressed now.

I wanted to ask around - to those living with any multitude of this - if you've experienced a disconnect between average written descriptions and your own case? Via typical blood tests that show low hemoglobin and stuff I guess I do have beta thalassemia trait, that I've been told typically doesn't have any symptoms or need any treatment. I'm anemic, and was put on a B12 supplement to help weakness and fatigue (didn't really make a huge dent) and after my issues continued it..must be something else? I dunno, I asked for a deeper conversation on this condition in general on the second visit, managing anything that comes up, etc. but since I'm categorized as beta there wasn't much to say and the conversation turned to a hunt for other things. What am I missing, doesn't this tend to cause anemia?