Can Thalassamia Minor hinder sports performance?

My name is Karen and I am 38 year old female cyclist with Thalassemia Minor. In my late 20's - early 30's I competed in triathlon competitions. No matter how much I trained/tried I would always finish in the middle to bottom half of the group (never last though!). As a passionate PE teacher with a keen interest in performing at an elite level, I can't help but feel I have been placed at a disadvantage in endurance sports. Is this justifiable or am I just making pathetic excuses for my lack of ability? My doctor keeps telling me that my condition is asymptomatic. I keep telling myself if Pete Sampras and Zinedene Zidane can do it, then so can I. Now in my late 30's, I would like to get back into competition.  I would really love to compete in a half iron-man - Is this physically possible? At present, my body doesn't seem to cope well with the extra training. I am suffering from extreme fatigue after a 100km ride and it seems to take days to recover. My muscles/joints are constantly stiff/sore and the more time/effort I put into training the more sick I get. Following a recent challenging 5 day school mountain biking expedition and I suffered fever, vomiting, sore muscles and it took me a few weeks to recover (including 5 days in bed). Was it a virus?  Or just old age? Or the result of Thalassemia minor? When I finally got my strength back, I went for my usual saturday ride and that same night I started displaying cold symptoms. I am always getting colds and always feel tired. In addition to this, I ride with a group consisting mainly of middle aged people. I just can't keep up with other female cyclists my age. I really want to increase my intensity, training sessions and performance but am limited by my health issues. Is there anything I can do to strengthen my immune system and possibly even increase my endurance/hameoglobin levels (other than taking EPO). I am looking at vitamin supplements, but not sure which will help me with regards to this issue. I currently take a whey protein supplement to assist with muscle recovery but it doesn't appear to be helping. My husband keeps telling me vitamin supplements are a waste of money and that I should be able to get enough vitamins from a balanced diet. I beg to differ! I also have an 8 year old daughter with Thal minor. Can you suggest what supplements would benefit her as well?

Hi Karen,

Thal minors generally report more problems as they get older. I attribute this to the years of oxidation, which is caused by the imbalance in globin chains, the defective red blood cells produced and the ultimate hemolysis or destruction of these RBCs. At all levels of thalassemia, depletion of vitamins and minerals takes place. Your diet alone cannot compensate for this depletion. Your husband may disagree, but he is wrong, just as every doctor who makes the claim that thal minor is asymptomatic is wrong, and this includes most doctors on earth. There is over a 50% chance that your husband is deficient is vitamin D. Perhaps testing might open his eyes a bit. I would suggest that you and your daughter both get the vitamin D test. Over half the people on earth are thought to be deficient, and thal only makes this more likely. If your levels are not at least a minimum of 35, correction will be needed. My own level could not be corrected until I took 5000 IU daily and I make a point of getting a lot of sun during the warm months.

In addition to vitamin D if needed, I suggest natural vitamin E complex, B-Complex, folic acid, vitamin C and magnesium. All are needed for building and maintaining the health of RBCs. At your age, L-carnitine or L-arginine should also be considered, as they help to increase the nitric oxide, NO levels in the body. NO is depleted by oxidation and is a big factor in loss of flexibility of blood vessels as aging takes place. None are expensive vitamins. I have taken the antioxidant, natural vitamin E for 37 years and absolutely swear by it. You will not see overnight results with supplements, as this requires long term dedication. Keep in mind that thal minors have a lower oxygen supply because their hemoglobin level is lower, so endurance exercise will be a struggle. Proper nutrition, staying well hydrated and learning proper breathing techniques are all keys to optimizing your endurance. Recognizing when fatigue means "enough, it's time to rest" is also very important. Many minors find that a short afternoon nap helps them get through the rest of the day. In terms of diet and nutrition, think antioxidants. These are essential in the battle against the damage that thalassemia does to the body. I find that thals have no room for error, so junk foods and empty calories should be avoided. Fruits, raw vegetables, nuts and beans are all good sources of antioxidants. Avoid sugars and processed foods as much as possible.

By the way, Pete Sampras would not reveal his thal minor when he was actively competing. His strategy was to dispatch opponents as quickly as possible, so enduring long matches could be avoided. He admitted to this once he retired. Even the great one understood that his energy supply was limited. Revealing it would give opponents an edge, so he waited until retirement to acknowledge this.

Thanks so much for this comprehensive reply Andy. You are truly a God send. I just wish I found this site when I was going through all my pregnancy related issues (my husband is thal minor too). I tried everything to get a second healthy child. Its been a very rough road and I am still suffering from it. I often feel sad and guilty about the decisions we have made (especially since I have read on some of your posts that a thal. major baby can lead a reasonably normal life). At the time, not continuing with the pregnancies was the option that my geneticist, counsellor and OB/GYN highly recommended and it seemed to be the right decision for our family. We both cannot deal with stressful situations and suffer from mild depression and anxiety. Even now when I think about how much my husband stresses out when our daughter get a minor cold, I know in my heart he wouldn't have coped at all with a Thal. Major child.

I am going to the doctors tomorrow and will request a full range of blood tests, including Vitamin D now. As my husband has a medical background, he has been taught that supplements are not required for the 'average' person with a balanced diet (not a thal. person). I will buy all the supplements you recommended for both my daughter and I and hopefully he will see how much better we both feel as well as having less illnesses. Hopefully then he will see the light and do the same as I know he doesn't feel great either. Its interesting you mention afternoon naps as I have found the need to have one after work. Usually 15-20 min cat nap is enough to recharge the batteries. I have never had the need to do this before.

One thing I forgot to ask you is that my husband suffers very badly from indigestion/heartburn and always has stomach cramps/IBS. He also suffers from anxiety which could be the cause of his IBS. I also bloat and feel uncomfortable in the stomach after eating carbs so I try and limit them which is not good for my energy requirements in sport. Are there some foods thals should avoid? Are we intolerant to gluten or wheat? Have you heard of other thal minors having digestive issues? I find red meat,eggs,raw nuts, fruits and vegetables sit well with me. Bread, pasta not so good. Rice is ok. Cheese is fine but milk is awful on my stomach.

Thanks again for sharing your amazing knowledge. Everything you told me confirmed all my suspicions. I thought it was all in my head. You have lifted my feeling of despair and I feel liberated and excited to embark on improving my diet and nutrition so that I can achieve all I want to achieve in this life. Keep up the great work!

PS I remember watching a really long and exciting 5 set match with Pete Sampras in a grand slam final. Towards the end he kept slouching over and vomiting at the end of the court. The commentators were saying that he was either poorly prepared in terms of his fitness, or that he must of had some sort of gastro (even though he looked perfectly fit and healthy earlier in the game). Must have been the Thal minor!

It is very possible that the digestive issues are diet related. I am amazed at how many new cases of celiac disease that are being reported. Testing should be considered. A food diary can also be quite useful to help identify any patterns. The problem with gluten is that there are small amounts in many foods like white vinegar, salad dressings, sauces etc in addition to the obvious sources. I would also suggest eating something with live cultures, like yogurt. I hear so much about different digestive problems, that I think there are more sources than gluten causing problems.

My oldest son has exercise induced asthma and more than once, he vomited while playing sports. I would think that Sampras also had oxygen deprivation during long matches and that brought on the illness. There is nothing more he could have done to prepare but commentators didn't need to know the truth at that time. I think Pete made a wise choice in keeping his thal quiet.

The choices you and your husband made were yours alone to make and I will always support that position, just as our founder, Lisa did. No one can walk in your shoes and no one has any right to comment on your decisions. This site is about support and not judgment. I want you to know you are welcomed here.

Thanks for the reassuring, kind words and thanks for making me feel so welcome.

Take care and God bless.

Karen

Karen,

I just recently found out that I am thal. minor. I have been running marathons since 2004. I originally started doing them as a natural way to keep my anxiety disorder at bay. I have many friends that also run marathons, and I have always felt like I seemed to have more setbacks than them, I seemed to always take longer to recover, I don't seem to get any faster even when I am training along side those friends who are getting faster. I constantly have stomach issues, but recently tested negative for celiac disease. I will be going to see a nutritionist in a couple of weeks to have a conversation about what foods and supplements I should be taking as an endurance athlete with thal. minor. After what I have been learning in the last couple of weeks, I am worried that she is not going to have a clue how to help me.

I think seeing another endurance athlete here is a breath of fresh air. I wish you the best as you aim toward another triathlon. Keep me posted! I am trying to reach a long-time goal of running 12 marathons in 12 months. Two down, ten to go.

Mo,

You are truly an inspiration. The fact that you have successfully completed a series of marathons gives me great hope in completing a half iron man one day. Perhaps setbacks and slow recovery will be part of process in reaching that goal. I too have more setbacks that my cycling friends and don't seem to get as fast as them even though we train the same. I'm not too concerned about where I place anymore (too old for that), I would like to just finish it within the cut-off time, know that I tried my hardest and beat my personal best. I too started cycling to keep my anxiety at bay. I haven't cycled for a few weeks due to back to back illnesses and I am going crazy! I feel like a pressure cooker about to explode. That's why I wrote to Andy, so I can see if there is anything I can do to build my immune system, increase the effectiveness of my currently limited red blood cells and improve my recovery as its taking longer to recover from a long ride. of  In an earlier post he suggested a series of supplements that will help me. I went to my GP yesterday and asked for a full blood count as well as a vitamin count to see where my levels are at. I will use this as a starting point to determine the amount of vitamin supplements to take. I am planning on taking vitamin D, natural vitamin E complex, B-Complex, folic acid, vitamin C and magnesium. My diet is very healthy, I eat all the foods Andy recommended but it just doesn't seem to be nutritious enough for me. I had a test for coeliac disease yesterday as well as I have stomach issues too. The other thing I am looking into is wheatgrass as many people on this site says it helps deal with fatigue and increase energy levels.

Seeing your post is a breath of fresh air too. Its nice to know someone out there is experiencing the exact same thing as me and that its not all in my head. I'd hate to think I am making up excuses for myself. Did you ever think how good we would have been if we had normal haemoglobin levels? Although I never made it at an elite level, I am proud to say I did quite well in all the sports I participated in - won my fair share of trophies and medals. I have heart, guts, will, determination and skill. My aerobic capacity just sucks! The though of taking EPO has crossed my mind as it would raise my haemoglobin levels to a normal level (which wouldn't be considered doping) although the risks of stroke just aren't worth it. Plus I'm nearly 40, sport now is not about competition its about participation, socialisation and enjoyment (as well as stress relief!).

I wish you all the best with the nutritionist. I doubt she will know much about our condition as many GP's don't know about it. Andy is the most knowledgable person I have come across. But its worth a punt, you never know she may know something we don't know. I would be interested to hear about her recommendations. Please keep me up to date.

Take care. All the best with your training and your fitness goals of running 12 marathons in 12 months! Wow! I feel tired just thinking about it! I am pumped to start working on my goal now. Just need to get over this darn cold first!

Karen

Hi Andy

I had a series of blood tests (including vitamins) and they all came back within the normal range. My vitamin D levels were in the high 90's. Note I am a PE teacher and a cyclist and spend most of my time in the Australian sun. Its sunny here all year round - even in the winter.

My question to you is - do I still need to take supplements? My doctor said I don't as I'm not deficient and I eat very healthy. But I still feel I don't have the strength to get through the day and my intense training sessions. I mentioned before I tire easily and have a poor immune system. He said its a haemoglobin issue from the thalassemia and will not be overcome with taking vitamins. What are your thoughts on this? Can these vitamins increase my haemoglobin levels? Or at the very least will they strengthen my immune system?

If you still recommend supplements do I need to take such high doses or will a simple multi do the trick? By the way I looked into L-Carnitine. I could only find the Musashi brand and its more than $50 for a small tub. All vitamins in Australia are very expensive. I am probably looking at $150 per month for all the ones you recommended. A friend of mine takes Vital Greens - its a multi that contains all the vitamins you listed plus a few other herbs but not in the exact quantities. Will this be sufficient?

Thanks

Karen

Hi Karen,

Your D level is great! Your doctor is right that the problem is a result of low Hb, and subsequently, low oxygen levels. This does limit activity to some extent and also causes you to tire more quickly. Concentrating on your breathing technique can help during activity, but you will ultimately be limited by your lower oxygen supply. Some people get a boost from wheatgrass, but this varies greatly. Wheatgrass is available in low cost tabs and you may find that the greens supplements have a similar effect. Since L-carnitine is so expensive there, supplementing may not be possible. We can thank body builders for giving this essential nutrient a negative connotation, as abuse of L-carnitine is prevalent among the muscle heads, and as a result, some countries have made it very difficult to obtain. It is actually quite cheap in the US. There is an excellent article about L-carnitine at http://lpi.oregonstate.edu/infocenter/othernuts/carnitine/  Near the bottom of that page is a list of foods high in L-carnitine. I would add berries and watermelon to this list. I would suggest researching foods that can provide nitric oxide, NO. These can provide the same benefit as L-carnitine.
I doubt you need a lot of supplements. I do suggest natural vitamin E, as it does have long term positive value to the circulatory system.

im  a  48  year  old  alpha  thalassemia  minor   man   and  i    also  have  schizophrenia  and  have  to  take  major  tranqillizers   for  schizophrenia  i  have  short  bursts  of  energy  i  have  to  make  the  best  of  short  4  hour  bursts   i  like  to  get  jobs  done  quickly  before  i  run  out  of  energy   i  definitly   cant  go  all  day  like  my  freinds   and  im  a  sprinter  rather  than  a  stayer  like  my  freinds ==== i  always  came  third   as  a  kid  running   800  metres  and  1500  metres  at  school  they  only  took  1st  and  2nd   for  inter-school  teams  so  i  missed  out   all  the  time === i  did  lots  of  10  klm  cross  country  runs  and  would  finish  in  the  middle  of  the  pack  im  not  as  strong  as  most  of  my  freinds  they  are  much  stronger  than  me  and  i  personally  think  im  weaker  because  i  have  alpha  thalassemia  minor  in  all  areas  i  think  it  has  a  huge  effect  on  my  strenght   i  have  to  make  hay  while  the  sun  shines  meaning  i  have  to  get  things  done  while  ive  got  strenght  cause  it  doesnt  last  i  burnout  reasonably  fast  depending  on  intensity....lucky  im  on  an  disability  pension   from  australian  government  so  i  dont  hasve   to  work  fulltime  adios  freind

Hello Mo, Karen, Andy and everybody else,

I have also beta-thalassemia minor and I am also a high-competitive olympic distance triathlete. Just as a small note, I have been competing in triathlons for almost a year now and have won a lot of local races. I even finished 4th at the Collegiate USA National Championships (open category). I can sustain long workouts but I can get over time a lot more fatigue than an average athlete. My coach has helped me a lot and the way we built my training schedule is not any different than an elite athlete. Only when it comes to tapering before a big race differes a lot (tapering=the amount of rest and the type of workouts you follow one or four weeks before competition). I do take a good quality multivitamin, iron and folic acid. Whey protein hasn't seemed to do anything with my recovery. Supplements that seemed to work well are the ones that help oxygen transportation for elite athletes (and they are 100% legal!) like Optygen HP or EpoBoost. I believe with a good training plan and supplementation you can win races! You just need to adjust your recovery period. Now I am not sure how far I can go, but I am aiming to go as far as I can.

Good luck!

Hi LilyTriathlete

Thanks so much for those inspiring words. Exactly what I needed to hear before the up and coming summer triathlon season. Now I am motivated to start training and I am not going to make any more excuses. You are living proof that people with Thalassemia minor can be competitive triathletes.  Where do you get the EpoBoost from? How early do you start tapering before a race? And what sort of training regime do you follow during the tapering phase?

Karen

Hi All,

Can I first of all add my thanks and congratulation to all who contribute to this site, I have not posted before, but when I saw this thread I was literally inspired to do something to help myself.
Like Karen who started this thread, I too cycle quite a lot and do it mainly to keep fit and also because I love to eat (good food not junk) and it helps keep the weight down. At 53 I have never been so fit and felt so good, I think mainly down to the cycling and because I have enjoyed a good diet most of my life. Having read this a couple of months ago, I thought I would take some extra vitamins as recommended by Andy in his responce. I have to say that since then I started taking Vitamins B complex, D, E, Magnesium suppliment as well as L-Arginine and L-Cartinine. I have taken Cod Liver Oil and Glucosamine / Condroitin for a few years now, but the last few rides I have felt so full of beans I think its definately improved my stamina and I will continue to monitor myself over the coming months. Normally I would cycle to work at least a total of 18 miles per day, not every day depending mainly on the weather, but with a 30 to 40 mile ride at the weekend and some days I've felt like my legs didn't belong, but I have seriously not had a day like that since taking the supplements.

I like many on this site have many stories to share, and I will continue the updates when I can, but by far the best experience for me was after spending a week or more in Mexico City on business. I avoided the usual going to the bar after the day's work and opted for the gym instead, I religiously did an hour and a half of various activities, spinning a few weights etc and didn't give it a second thought. When I got back home and got back on the bike, I really did feel like I had a rocket attached, I was faster, easily climbed hills which usually caused a bit of leg ache, it was so increadible. I just happened to mention it to a friend who said "you've effectively been altitude training". It all made sense, but I felt great for 2 to 3 weeks thereafter. I'd love to try that again, but as yet haven't had the opportunity.

Anyway, Thanks to all for your continued information and help.

Mr. M.

My energy levels are always low, I cold never run races. Slow walks are ok for somtime. I tried daily regular exercise but my hemoglobin dropped to 8. I am till trying to recover. Its as if physical activity increases my hemolysis and metabolism. I feel like a furnace, and I become very pale. The only time i'm comforted is when i lie down. Trying supplements now, lets see what happens. 

I just wanted to comment on this thread and say that I can totally relate.  I have trained in Martial Arts since the age of 11 and when we would do intensive workouts I would have a much more difficult time recovering from workouts than my peers, or even older individuals who worked out less than me.  What I mean by recovering is what I would call delayed onset muscle soreness.  There would be days I was so sore I wouldn't be able to even throw a basic front kick for the next 2 or 3 days.  When we had to do long distance running in middle school and high school I would have to train for months to have a mediocre performance.  In college I was training for an endurance martial arts trip where I had to be able to run a minimum of 5 miles each morning so I partnered up with one of my friends who had never done any type of running before and was very sedentary and around 30lbs overweight.  She wanted to lose weight and I wanted a buddy so I thought I would be able to motivate her.  For the first couple of weeks that worked with me taking the lead running, but then she started making gains that I couldn't keep up with even though I had been doing cardio workouts 3-4 times per week for years.  In the end I slowly increased my endurance bit by bit and she continued to beat me by greater margins.  I was happy for her, but frustrated that I worked so hard and made so little progress.  We ran together in a 5K a year later, she beat me and was in great shape the next day.  I ended up puking at the end of the race and I was so sore for the next couple of days I didn't want to get out of bed.  I never really thought of the connection of overexerting myself physically and getting sick, but when I think about it anytime I don't get enough sleep or overwork myself physically I do usually end up with a respitory infection, whether that is because of Thal or asthma though I am not sure, maybe a combination.  Best of luck to all the athletes!