Unusual T Minor and endurance sport.

Hi,
Diagnosed with Tminor 30+ years ago, (given Iron as I was anemic) and kids have also got it.

Reason am on here is just advise for them but mainly, me. I am an avid OCD cyclists who uses TM as an excuse when someone beats me, and the more I get into the sport am trying to find out how to improve.
I dont seem to have the issues many talk about on here, strange, but I love the endurance aspect 100+mile rides hour after hour. This seems to contradict what should be happening, and I have no idea why? But maybe I can better with supplementation, diet breathing etc etc all the points I have read on here.
My diet is whats recommended allready, apart from I eat/train on Fat instead of carbs. I train a lot, my body weight is V low BMI (yes its a crock, but a guide).
 
Question is, am I the only one?

Do I get a blood test? How do i convince UK doctors to do it free?
  
Anything specifically I can do to improve?

Just to say the more i read on here, think I will shut up. Never realised the extent this affects people.

You have been diagnosed in your childhood, were fully aware of your disorder and passed it on to your children? On top of that you register on a forum, tell people that you use thalassemia as an 'excuse' and ask them how to treat symptoms that you, according to your explanation, do not even have? What kind of mockery is this? It's hard to find any words that would reasonably express my disgust.

Sofear please hold on i think somthing is lost in translation and incomplete.

Tazo101, there are so many thal mutations, every mutation has different intensity.
Assuming you have beta thal there are three types of thal mutations. Severity of Beta++ is lower than Beta+ and Beta0.
As you are a minor and already getting good diat, symptoms may be less intense than others and little different depending on type of mutation.

Sofear.
I was diagnosed with Thalesemia Minor when I was about 10, 40 years ago, the whole family got it done. We were given Iron supplements, luckily as I was a twatty kid I never took them. My sister who lived in Switzerland was really ill on them and eventually after cousins in Canada went barmy when they found out, we all changed.
Nobody in UK knew what it was and all I was told was it was Thalesemia Minor still know nothing of Beta+ etc. When we go to doctors/hospital, its always a drama ANEMIC Bleeding out etc, no matter how much we tell them.

1 kid has the trait not full blown the other didnt. All we were eventually told was its ok having kids so long as other person doesnt have the trait. My wife doesnt.

I think by the reaction of my 2nd post you can see that I have realised what Thalesemia means to people, true?

And yes I do say I have Thalesemia as a pee take, the same way when I had ( v, Minor) skin cancer I joked that i needed to lose weight. This may offend you/some but my belief is Bo**ocks to disease I will try and overcome it. (hate this phrase) PMA.

Not trying to cause offence and am more aware of what this disease is like, now. In the UK its unknown, even though in Bradford we have a full dept dedicated to it, because of the large Asian population.
 

Thanks Jay
I have booked in for a blood test, what this will show reveal I have no Idea.

I cant say its for some noble reason, its not. I am doing it because luckily I dont seem to be affected that much with it, but if I can get some improvement great.

I do worry from what I have read about the affects this can have on me, as I train stupidly, antioxidents and damage excercise does to the body is something I am getting more into.

From what I have seen/read on here the variety of symptons -variations this thing causes is wide.

So for not making me go "Sod this Forum" Jay thanks And hopefully it should encompass everyone who is affected no matter to what degree.

Thats it I will now shut up! Hells bells, the verbal diarrhea from me.....

Tazo,

A simple hemoglobin test will tell you what you need to know. If your Hb is below normal, as is the case with most thal minors, it does mean that you will be limited to some extent physically. Even tennis legend, Pete Sampras admitted to being limited by thal minor during his career. He never admitted to being thal minor until he retired and then explained in an interview that his strategy was to dispatch opponents as quickly as possible, so that fatigue would not be an issue. You are already doing much of what you can to improve your health and from your reports, you have done an admirable job. Don't say excuse. It is a reason with a rational explanation. My only advice is if you don't already employ breathing techniques, learn deep breathing and employ it during rides. I have asthma, yet I was able to take long rides by learning deep breathing, which allowed sufficient oxygen flow for the exercise.

Jay, thank you for your intervention in this thread. As you are, I am also certain there is a communication issue that caused the misunderstanding.

Thanks, will see what test says think its not going to be anything unusual, inc the call, please come in NOW you are Anemic.

Just dont understand why I am good at and love the endurance??
Must just be a stubborn git.

When I get, is it ok to post results on here, trust you more than the Profession?

Please do post any blood test results or PM me with them if you want to keep them private. I have seen thousands of blood reports from thal minors, so I do have more experience examining the reports than most doctors.

There are world class athletes like Pete Sampras and Zinedine Zidane who are also thal minors, yet both excelled and were at the top of their respective sports.

Will do, thanks.

Hi sorry for latenes have been away.

Was lucky with the new doctor, she worked in Heamotology and knew about Thal. Says my stats were last year 11.6 now 10, so gone down. She says the body finds ways to overcome "problems" which explains, my ability to do sports as I do.

If you can see anything on these records please let me know.

Dear Tazo,

A warm welcome to thalassemia patients and friends.  I am glad that you enjoy fitness and endurance.  My husband, also a thalassemia minor - loves endurance.  He cycles, runs and over time he is building up his swimming. 

I think that having lower hemoglobin associated with thalassemia minor, as well as smaller blood cells - slightly decreases the amount of oxygen available in the body so there is definitely some disadvantage as compared with those who do not have thalassemia.  It is also possible that you also have an alpha mutation, which may affectively decrease you thalassemia symptoms. 

Thank you again for sharing your positive story, so glad that you work hard and enjoy being fit and healthy.  That is something that we all do and should strive for.  Let us know if we can help with anything!

Best,

Sharmin

Tazo,

Nothing really unusual on your reports for a thal minor, although a couple values are a bit lower than I usually see. The MCV and RBC are on the lower side for thal minors. I do think a strong nutritional program could help you. I think concentration on what is needed to build red blood cells, folate, B complex and magnesium, would have real value, as would wheatgrass tablets if you can find them.

You did catch on quickly to the fact that thals can go through really terrible lives when they have the major form, and even many minors have real quality of life issues. But there is a group of thal minors in this group who have the same goal as you of improving their physical performance level, and although it doesn't involve health threatening problems, it is still a legitimate concern and I'm happy that our forum is willing to accept all issues that confront those who deal with thalassemia. Read as many posts on the topic as you can. There is much experience and much advice from fellow minors who are battling the same endurance issues.