Doctors should care more about thalassemic minors

Hey!
My name's Lara. I'm a med student from Lebanon.
In Lebanon and other middle-eastern countries thalassemia is a common disease. A lot of people have thalassemic trait and don't even know it.

A few years ago, I was diagnosed with beta-thalassemia minor. The Dr. told me that I was asymptomatic. I have read about it in medical books, I asked doctors about it and all told me the same thing: thalassemia minors are asymptomatic.
I think they are wrong:
- When I play sports I feel breathless right away (I can keep playing though. i swim a lot and I think that helps)
- I sometimes have chest pains and heart palpitations that have no cardiological explanations.
- I always feel tired when I wake up.

I have always been able to do the things I wanted to do. But maybe others have more symptoms and therefore a reduced quality of life.

Anw, I am gonna be a doctor in a few years. I wanna be a cardiologist or maybe an hematologist. I will never tell my patients that they are asymptomatic. All the Drs I asked insisted that thalassemia minors have no symptoms. It made me feel like I was imagining things, like I was exagerating...

If thalassemia minor is not life threatening, this does not mean that patients have no symptoms. I think that Drs simply don't care about this subject and think that other things are more important. So no research is done on beta or alpha thalassemic trait.

Thalassemia minors have lower Hb blood levels,lower hematocrit. MCV and MCH are below normal. They have microcytosis, poikilocytosis...so a lot of them probably do have some symptoms.

Doctors should care more. If your Dr tells you are asymptomatic and you feel that you do have symptoms the he is the one who's wrong, not you! Medical books are not always right.

Hi i agree,

for short periods i can use my exercise routine and eat healthy, but sometimes i feel weak and tired and feel unwell for days and evrytime i see my doctor he/she shrugs me off as if i'm a drama queen they dont have to live like this.
I also feel my breathing is low sometimes and my feet are always cold and my body aches but at least my partner understands me.

I wish there was more people who recognised us once in a while but in the same breath thankful we do not have intermediate or major as they are the worse off than us.

I take folic acid which is in most foods as well and helps cell renewal try it.

Take Care
vicky ( Manchester,England)

Yup, I've experienced the same thing with doctors.

But if they won't help or even acknowledge the problems we can help each other.

I know for a fact that sunlight helps us immensely.

Eating well and exercising, especially cardiovascular workout. Anything that increases blood circulation. So yoga might be a good idea if you're a bit older.

[rajeshpop]

Originally Posted by Ice_5

Hey!
My name's Lara. I'm a med student from Lebanon.
In Lebanon and other middle-eastern countries thalassemia is a common disease. A lot of people have thalassemic trait and don't even know it.

A few years ago, I was diagnosed with beta-thalassemia minor. The Dr. told me that I was asymptomatic. I have read about it in medical books, I asked doctors about it and all told me the same thing: thalassemia minors are asymptomatic.
I think they are wrong:
- When I play sports I feel breathless right away (I can keep playing though. i swim a lot and I think that helps)
- I sometimes have chest pains and heart palpitations that have no cardiological explanations.
- I always feel tired when I wake up.

I have always been able to do the things I wanted to do. But maybe others have more symptoms and therefore a reduced quality of life.

Anw, I am gonna be a doctor in a few years. I wanna be a cardiologist or maybe an hematologist. I will never tell my patients that they are asymptomatic. All the Drs I asked insisted that thalassemia minors have no symptoms. It made me feel like I was imagining things, like I was exagerating...

If thalassemia minor is not life threatening, this does not mean that patients have no symptoms. I think that Drs simply don't care about this subject and think that other things are more important. So no research is done on beta or alpha thalassemic trait.

Thalassemia minors have lower Hb blood levels,lower hematocrit. MCV and MCH are below normal. They have microcytosis, poikilocytosis...so a lot of them probably do have some symptoms.

Doctors should care more. If your Dr tells you are asymptomatic and you feel that you do have symptoms the he is the one who's wrong, not you! Medical books are not always right.

I am sorry to reply so late, I would request you to be a Hemotologist so that you can understand the Thal minors & guide them better, plenty of symptoms are available for Thal minors like Mood Swings, Bones are Brittle & as you said MCV, HBA2 & MCHC is low also the size of RBC'S is small.
Hope to be helped by a young & understanding Hemotologist.
with regards

Yes! I agree. My doc was so ho hum about it....and I am not getting any straight answers ad to do I add iron to my diet or not, cuz my iron was low too. It's frustrating cuz I am 42 years old and although always been active, it's just now slowing me down a bit. And I need to keep up with my 8 year old. There has to be something we can do with this.....

[Narendra]

Yes Curious,

There is a lot thal minors can do with their health. Eat Healthy, Excercise and keep bringing the issue up with the doctor (even if they don't listen).

Actually, there has been a study of thal(minor) having issues and I have heard from a lot of thal(minor) moms about problems with pregnancy due to low hemoglobin. I also hear - Thal(Minor) need to take supplements like Folic Acid, B Complex to help them.

[Wai]

I totally agree with this... I have been so frustrated and annoyed with a number of doctors that I have seen over the years who just don't seem to be bothered...

I was diagnosed at 18 and my doctor just sent me away to find out about it myself as he didn't know much about it apart from he knew I had Alpha Thalassemia Trait and that I was anemic and that if I was to have a child, then to make sure that I have my partner tested too otherwise your child may have some problems too...

I've been back to the doctors a number of times explaining I've been suffering from headaches, tiredness, nose bleeds, I get the flu once or usually twice a year and I've asked if I should be having quarterly or yearly tests done, should I have the flu jab etc... all they have said is its not necessary and I don't need too... even though I have mentioned to them that I got these questions from researching on the internet... they just make you feel like a hypochondriac and that your wasting their time...

What I have also got annoyed with is that I read up on materials on the internet and sufferers of Alpha Thal Trait should have very little or no symptoms so its makes this condition not even worth looking into for doctors... so why do I find myself so tired all the time, suffering from headaches, falling ill more often than not... even though I eat healthy and exercise...

Thank goodness I can work from home but when I have to travel 1hr 30mins into work, I find myself really exhausted and feeling weak for the next couple of days... this isn't normal...

I have thal minor. I live in Hong Kong and like you have all the symptons.

I have managed to improve my blood count with carao fruit syrup and blackstrapmolasses.

i researched this online and hopefully you could benefit.

hope this helps

maria

Hi there

I'm feeling terrible and finding it hard to go on every day. I'm dizzy, headachey, chilled and exhausted. It goes up and down and I've so far managed to stay in work but this week only just. I'm getting upwards of 10hours sleep. Latest blood test 10 days ago showed hemoglobin at 7 and doctor gave me iron supplements. I have thalassemia trait. I actually was feeling a bit better at that point but when I went back to doctor for advice on how to manage whilst iron deficiency corrects, she started looking at all sorts of other things. I was a bit surprised she didn' tconsider the low hemoglobin a factor and just tell me how to cope. Inevitably she started asking if I was depressed etc and I just wished I hadn't bothered. Anyone advise me how best to generate / manage energy - I have a critical interview coming up and need to know if rest will help (or not).

catvibes

hi, i am from romania, i am 34, i m going to give birth to a child, in 5 months, and i ve just been told i have minor thal. what can i do to improve my blood condition through diet? what do we have to eat in order to keep hemoglobine level under ctrl?
thanks,
alis

I have Thal intermedia and I just recently had a baby...one thing my doctor recommended that I take while pregnant was extra folic acid.

I can't agree more! Having issues with my Thal & dr's look at me like I have no idea whats going on with my own body. I am just wondering if anyone is having an issue with blood pooling in joints. I went to the dr yessterday as my right thumb looks like its broken, but x-rays says its not. Have 2 family memebers who are ENTs said looks like blood pooling keeps getting worse & all the dr could come up with its athritius. I'm only 51 & yes I do have arthritus, but really ca't we ever spend the time & look a little further! Makes me nuts. And My Dad's generation all had this pretty severley, they all manged to live really long lives, yet in my generation it seems to be making us all overly tired and weak.

thanks for the info...


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