Can Thalassamia Minor hinder sports performance?

I played sports a lot growing up. Short sprints, I could hold my own. Any kind of distance/endurance - couldn't hack it.

Hi there. I am of Polynesian descent, 43 year old male. I just attempted my very first full ironman event in Taupo New Zealand. For the first 7 hours everything was going really well at the 120km bike mark everything started going wrong, I only lasted to the 145km mark after 10 hours. I started loosing sensation in my feet followed by an intense burning feeling in my toes. This was followed be cramping of my lower leg and it gradually moved up to my quads. I had to dig really deep to push through it. The day was hot at 30 deg and windy gusts at 20kph. I am only just getting to terms with this condition. I have never felt pain like it and I passed out on the bike. I woke up an hour later in the medic tent. I accredited the cramping to me being over weight but after reading your guys stuff see there is more to it. I also have scales that detect hydration, muscle, bone and fat compilation. I have never been able to increase my hydration level above 42 percent even though I have consumed vast amounts of water. I have unfinished business to do and have 12 months to prepare for it again.

After reading some of the other links I would like to say it is very possible to to half ironman events. I have done 2 and a bit in the past 3 years. Although the second one was extremely challenging I decided to give a third one a go in December 2012. Three weeks before the event I got really sick after a long training day. I had a range of tests done to try and figure out what was going on and that is when I found out I had alpha Thal minor. The doctor didn't think much of it. I didn't finish my third half

Lily triathlete may I ask what was different about your tapering? Look forward to reply
Steve

Hi I am a 31 year old female with Beta Thal Minor. I have been looking for answers just like I found on this thread! Thank you to everyone who contributed. I always played sports and was very active and began to feel the fatigue of the thalassemia minor in high school. Since my mother has the same thing I asked to be tested and it was confirmed. Up until the last 4 years I really have not had too many symptoms. But I have been actively trying to get back in shape and set fitness goals for myself as far as running and training. Every time I am set back by either getting sick or muscle cramps and joint swelling and soreness that takes days to recover from. I was already taking a pretty good mixture of vitamin supplements and trying to keep a healthy diet. I had an issue with sludge in my gall bladder a couple of years ago and it hasn't bothered me to much since I am trying to stay fit.  After reading this thread I immediately started taking more of the vitamins Andy suggested and already am feeling a difference in my muscle soreness. The L-Arginine, L-citrulline, and L-Carnitine REALLY helped!

My question is though what is a recommended recovery time after an intense boot camp like workout and regular running. I often try to train for longer distance running but often start hurting in my joints and find it hard to breathe. I am currently doing hour long training sessions 3-4 times a week mixed with short runs. I want to keep this up regularly but my aches and soreness seem to take FOREVER to really go away. I seem to cramp up easily and drink a lot of water (almost a gallon) a day but still feel thirsty sometimes. I want to be able to keep up my working out as I am seeing great results and it REALLY helps with my depression and anxiety. Exercise is a must for me! Any suggestions on what else I can do would be awesome.

Apologies for 'reviving' this old thread, but I figured I could just add my experience here without opening a brand new one.
I'm a 31yo man with Bthal minor. I live in the UK but I was born and brought up in Italy; I inherited the thal trait from my father (who was born in the Po' Valley - just about the only spot in northern Italy where you get a nice cluster of thal minors  )
Like some of you, I have been pretty asymptomatic for most of my life. I couldn't do cross country training in high school as I would get sick and breathless very quickly, but I was into sprinting, jumping, discus throw etc. I did some competitive cycling in my teen years but I performed very poorly. So i stopped
Last year I developed a passion for running. I started off running 3/4k, then over several months increased the length and pace. I live in a hilly town, so every run is hill training. I had a couple of injuries but nothing serious; however, when my runs crossed the threashold of 12k (1h) I started having bizarre symptoms that none of my friends had. It would take me ages to recover from cramps and aches (sometimes a whole week); I would often feel the need to sleep straight after a long run and more in general I would feel so fatigued that the rest of the day was a struggle. As I had been training and increasing the miles very consistently and progressively, I couldn't get my head around it. When I ran 15k I started feeling incredibly sick at the end, even if the pace wasn't 'extreme'; I had a massive bellyache (but not nausea, and I was able to eat a two course meal without problems). A 10 miles race knocked me out for at least 8 hours (and it took me 5 days to return to a slow, short run).
What have I done? I followed the advice in this thread and started working on my dietary intake. I monitor how much proteins, carbohydrates, fibres, vitamins and nutrients I get each day. I'm taking vitamin supplements. I ditched nearly all junk food (no crisps, no  fizzy drinks, nearly no alcohol, etc.)I went to my GP and aked for blood test and make sure my vitamin D, B12 and folates levels are up to scratch. I did that 2 months ago.
I am feeling better. If I run more than 12/13k I need to make extra sure the pace is easily manageable. I litteraly have to slow down even when I feel I could be pushing, and that frustrates me, but I can feel the difference. If I push now (and I occasionally do, especially during a race)I know I'm going to feel sick, although not as badly as before. There is absolutely nothing else wrong with me from a health point of view, so I figured it must be the oxygenation. Which is likely due to bthal.
For fellows runner - lots of proteins and running on grass rather than asphalt has drastically decreased aches and pains. I still get them but much, much less. Friends who train with me say they don't notice a big difference if they run on pavement or grass, but I certainly do.

Oxygenation really is the only issue and that can only be changed with a higher Hb. Supplements like wheatgrass and resveratrol may have some upward effect on Hb but many do not see any change. Best thing to do is respect your limits so you don't risk injuring yourself. With work, diet and supplements, along with good breathing techniques, those limits can improve, as you are already experiencing.

Oxygenation really is the only issue and that can only be changed with a higher Hb. Supplements like wheatgrass and resveratrol may have some upward effect on Hb but many do not see any change. Best thing to do is respect your limits so you don't risk injuring yourself

Thanks for your reply Andy. Respect my limits - easier said than done 
As an aside, I am going to start doing 10 minutes of deep (diaphragmatic) breathing every day to try and see whether it can help with the recovery times. I occasionally teach it as part of my profession but it never occured to me that I could use it to improve oxygenation levels. I am not expecting dramatic changes, but, from my viewpoint, every little helps. I will report back and share my experience.
Unfortunately fatigue and long recovery times will always hinder my performance, but I guess I can work around them (e.g. in 2012 I used to feel sick when I ran 10k in 53min, I now get the same feeling when i run them in 43min)

Breathing while exercise can greatly increase your output. I have asthma and have very limited physical activity unless I do deep breathing throughout. For me, breathing is the difference maker that allows a one mile bike ride to become a 20 mile ride.

Just a quick update. I have recently had some blood tests to check for vitamin D deficiency - lo and behold, my value was 37. Not yet severely deficient, but getting there. My GP wanted me to take 400IU a day?? No way, I will stick to the advice provided here and take 5000IU a day.
I also had a full blood count and my bilirubin level increased from 27 to 35 from last year. Is it reasonable to attribute this to a significant increase in physical activity? My body needs more oxygen to cope with the extra demand and the production/disposal cycle of red blood cells needs to accelerate. I have no obvious symptoms. My GP (which I don't particularly trust anyway) told me that above 40 I will show signs of jaundice. Well, my father always had yellow eyes and they never bothered him!
On the positive side - HB levels are up from a year ago (108 to 115). Might be an insignificant statistical variation, or perhaps exercise plays a little role? (doubt it though).
Here are some of my values:

HB estimation: 115 g/L
Haematocrit 0.354
MCV 57.5 fT
MCH 18.7 pg
Red Blood Cell distributed width 16.2%
serum total bilirubin level 35 umol/L

Hi Everybody
I'm happy i found this post ! I'm from Canada and here, Thalassemia (Even minor) are not common. ( So sorry for my bad english)
I used to biked a lot and ''retired'' since we have our daughter.  ( I was expert-elite) at - 20-25 years old.
Since 1 years, I became more interested of coming back to race and train hard. But this 37% HT confirmed last years years bugged me
 So, as long as its hard to find help here for this kind of problem, I'd like to know what are the good and bad about using an hepoxic tent. And, is really eprex a bad idea if its controlled by a doctor ? PS, money is no object, I like this sport and I'm ready ( I guess) to do what I need to be just like 100% normal person who train as hard as me ( note that recovery is also hard for myself...)
Thanks a lot in advance !!

I am skeptical of its ability to help a thal minor. The problem thal minors experience is due to low Hb and the tent will not increase Hb.

http://www.outsideonline.com/fitness/bodywork/fitness-coach/Do-Altitude-Tents-Work-.html

...don’t expect the tent to trick your body into increasing your red blood cell count. “It’s very unlikely that the altitude level and the exposure duration would be long enough for really inducing an increase in your hemoglobin mass,” Millet says. But neither will a single week at altitude. “Going to altitude the week before the event is probably the best thing for ventilatory adaptation, but you need to go for at least three weeks, four weeks is better,” to significantly increase your red blood cell count, he says.

After 3 weeks at high altitude, the Hb will increase in response to the lower air density at high altitude, but you can't get that from a tent.

I would instead recommend that you look to the nutritional side and to increasing your breathing abilities. I have asthma, including exercise induced asthma, and utilizing breathing techniques learned in yoga enabled me to ride for long distances at a good rate of speed.
For nutritional recommendations see http://www.thalassemiapatientsandfriends.com/index.php/topic,4890.msg46774.html#msg46774

Well, I have read several posts here from thal minors stating fatigue and performance related issue. I am myself a thal minor (as my daughter is a thal major) and used to feel tired even early in the morning. After lot of searching and trying out different things, I figured out a way of fighting fatigue and tiredness. I realised that my lifestyle was very different and not suited for my body. I used to sleep late, wake up late, skip break fasts, hog like  a dog during lunch, eat lots of deep fried foods in snacks and have a heavy dinner. I changed my life style completely - now I wake up early, give myself a good 8 hour sleep in the night, have the right kind of food at the right time, do a free style exercise in the morning for 20 mins and Voila - I feel more energetic and active now. I now play cricket for 3 hours on saturday and sunday every week.

Being thal minors our body definitely is a little different from others but is it really a hindrance.  I know of three great people who are thal minors and have gone up to become the best the their own fields, and yes it really requires great energy to be on the top..

1. Amitabh Bachchan - Star of the millennium - is a thal minor
2. Pete Sampras - Tennis legent, is a thal minor
3. Zinedine Zidane - Soccer legend, is a thal minor.


http://powerofthegene.com/joomla/index.php/genetically-inherited-diseases/blood-disorders/thalassemia

I am skeptical of its ability to help a thal minor. The problem thal minors experience is due to low Hb and the tent will not increase Hb.

http://www.outsideonline.com/fitness/bodywork/fitness-coach/Do-Altitude-Tents-Work-.html
After 3 weeks at high altitude, the Hb will increase in response to the lower air density at high altitude, but you can't get that from a tent.

I would instead recommend that you look to the nutritional side and to increasing your breathing abilities. I have asthma, including exercise induced asthma, and utilizing breathing techniques learned in yoga enabled me to ride for long distances at a good rate of speed.
For nutritional recommendations see http://www.thalassemiapatientsandfriends.com/index.php/topic,4890.msg46774.html#msg46774

Ho I see ! So I just save 4500 $ Lol
And what about Eprex or epo in case where its ''Legal'' to use it ? I mean, if its was invented for that ? or Canser treatment ?  I eat and Sleep so well I think, I breath by stomach not diaphragm, I guess its a major point... I like to climb 1000 vertical meter in bike but its hard and hard to accept I have 5-20 % less capacity than other guys beside me

I like to climb 1000 vertical meter in bike but its hard and hard to accept I have 5-20 % less capacity than other guys beside me

Don't put yourself down, and don't underestimate yourself. As stated above, my Haematocrit is 35 but this hasn't stopped me so far to perform in the top 10th percentile in most amateur races (I like to run). And I'm pretty confident I can get in the top 5th with enough training.
I feel that as Thal minors we have much less leeway than other people when it comes to following a training plan. Every increase in activity need to be well thought out. Endurance training can be painstakingly slow and longer-than-average recovery times need to be taken into account. Experience has taught me that if I train to run 13/14k flat-out, running 16k flat-out will almost certainly make me feel horribly sick afterwards. I have friends who can run a half marathon after training for a 10k. Well this is nigh on impossible for me.
Make sure you eat a balanced diet (there is a very good section about it on this forum)and take all the time you need to let your body adapt to the new level of effort before increasing it.

Don't put yourself down, and don't underestimate yourself. As stated above, my Haematocrit is 35 but this hasn't stopped me so far to perform in the top 10th percentile in most amateur races (I like to run). And I'm pretty confident I can get in the top 5th with enough training.
I feel that as Thal minors we have much less leeway than other people when it comes to following a training plan. Every increase in activity need to be well thought out. Endurance training can be painstakingly slow and longer-than-average recovery times need to be taken into account. Experience has taught me that if I train to run 13/14k flat-out, running 16k flat-out will almost certainly make me feel horribly sick afterwards. I have friends who can run a half marathon after training for a 10k. Well this is nigh on impossible for me.
Make sure you eat a balanced diet (there is a very good section about it on this forum)and take all the time you need to let your body adapt to the new level of effort before increasing it.

I know, and I agree with you, but still, its so frustrating... I do it for the love of the sport.. but .. You know

Dear all,
I'm verry happy that I've just discovered this forum. I have as well beta thalassemia minor, I'm 38 years old and I have been practicing sports since 2012 (cross 10k, half marathons, marathons, triathlons, MTB and HalfIronman).
I'm taking care about training and recovery program, food, hydratation and suplements like folic acid,  magnesium, vitamin C, B complex.
But my average heart rate is 185 (running with pace 5'10" or biking with speed 30km/h) and during the final sprints I reach usually 205. I've done couple of cardiac investigations and my heart looks properly.

Is this and issue for my heart? Should I decrease the effort level of my races?!

Thanks in advance for any answer,
Ionut