Thalassemia Patients and Friends
Discussion Forums => Thalassemia Minor => Topic started by: gkhaj on June 09, 2012, 01:29:21 AM
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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?
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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.
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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!
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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.
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Thanks for the reassuring, kind words and thanks for making me feel so welcome.
Take care and God bless.
Karen
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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.
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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
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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
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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.
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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
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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!
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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
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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.
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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.
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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!
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I played sports a lot growing up. Short sprints, I could hold my own. Any kind of distance/endurance - couldn't hack it.
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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
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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.
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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 :rolleyes)
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.
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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.
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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 :rolleyes
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)
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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.
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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
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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 !!
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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
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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
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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 :(
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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.
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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
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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
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Ionut,
What is your resting heart rate? What is your hemoglobin level?
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Hi Andy,
My resting heart rate (over night) is 64. I've measured it with my watch: http://www.movescount.com/moves/move24558268
My hemoblobin level is some time 11 some time 12.
Best regards,
Ionut
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Hi Andy,
My resting heart rate (over night) is 64. I've measured it with my watch: http://www.movescount.com/moves/move24558268
My hemoblobin level is some time 11 some time 12.
Best regards,
Ionut
Hi Ionut,
Are you a man or a woman? I'm a man, age 32, haemoglobin levels similar to your and I do endurance sports as well (running). Your resting heart rate seems a bit high if you are training regularly (mine is around 42/44 early in the morning, sometimes lower). Do you notice a difference if you race/train in the morning or evening? My heart rate tends to shoot up much more quickly in the morning before breakfast. I would say it is typically 5/10bpm slower in the evening, with the same level of effort.
Is 5'10" your pace per mile or per k? Per mile would be really really fast!
I can tell you that in the last 400/500m of a 5k my heart rate shoots up to almost 190, but the effort level if massive. Around 170/175 is still aerobic although the effort is significant. Anything above 175 is not sustainable for longer than a few k (although in a 10k I averaged 177 bpm).
185 seems a bit high. Have you been doing sport for long? What's your weight? Sorry I'm not an expert, I'm just trying to figure out what might be contributing to the heart rate
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Hi!
I'm a man, 1,75m, 75 kg.
Running pace 5'10"/km - heart rate 185. I was able, last year, to run a half marathon in 1hour and 50 minutes with the same average pace.
It's true that in spring 2014, during an Ironman 70.3, the average pace was 161. But than I had to run with a pace ~ 6'00"/km.
Ionut
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Ionut,
It sounds like you have an amazing ability to compensate for the slightly lower Hb level. Your resting heart rate is excellent. As long as your doctor feels there is no danger from the high heart beat while active, I don't think there's any cause for concern. Sounds to me that you are extremely fit.
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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.
Hi Karen,
Could you tell me please, which is your heart rate during these races (marathons)?
I have also thal minor, and as I've mentioned in below, my average heart rate for races 10k is 185 ..with peak 204 for final sprint.
All the best,
Ionut
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Hi!
I'm a man, 1,75m, 75 kg.
Running pace 5'10"/km - heart rate 185. I was able, last year, to run a half marathon in 1hour and 50 minutes with the same average pace.
It's true that in spring 2014, during an Ironman 70.3, the average pace was 161. But than I had to run with a pace ~ 6'00"/km.
Ionut
Hi Ionut,
Just wanted to clarify that your resting heartbeat is well within the normal range - most athletes find that their heartrate is lower of those of people that do not regularly practice any sport, hence I would have expected yours to be a bit lower, but the variability is so high that this should not be a cause of concern - especialy if your exams did not show anything abnormal.
Sounds like you are doing extremely well
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I am not a marathon runner but like to keep reasonably fit, go to the gym for an hour and a half a week and keep reasonably active. I do think my aerobic capacity is limited - I always was last in school races and only found out in later life that I had beta thal trait. Hb around 11, BMI about 26 so a little overweight. I am 57 years old. Going skiing again this winter and find it incredibly tiring - a lot more than I think is normal for my age. I wondered if anyone on this site had any experience of epo-boost, the nutritional supplement as opposed to injectable erythropoietin.
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Just out of curiosity....for whomever might be interested
New blood test today - here is a comparision with my last one 6 months ago.
In the last 6 months I have run approximately 900k and exercised consistently.
(2015 values in red)
No big difference (apart from bilirubin - I wonder why), but none was expected to be honest.
HB estimation: 115 g/L 110 g/L
Haematocrit 0.354 0.34
MCV 57.5 fT 56.9 fT
MCH 18.7 pg 18.2 pg
Red Blood Cell distributed width 16.2% 15.8%
serum total bilirubin level 35 umol/L 23 umol/L
Resting heartbeat 39 bpm (also had an ECG as I was worried about bradycardia, but it looks like it's nothing to worry about)
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Bilirubin is normally high in thals due to the high turnover of red blood cells. This can fluctuate depending on the turnover rate. And much is unknown about what may cause hemolysis in thal patients. We know that eating broad beans, like fava beans, or being exposed to various chemical fumes and drugs can cause hemolysis in alpha thals, and here at thalpal, we have heard from beta minors who have had instances of hemolysis set off by exposure to fumes, and even some common household scents like artificial perfumes and colognes and scented laundry products. If this does happen, you will notice a lack of energy, as it causes a brief anemia. Should this be a possibility, observe what exposures you've had leading up to the sudden drop in Hb. It may be that you had some exposure to fumes at the time. Certain drugs like sulfa antibiotics, can also cause red cell destruction and a sudden drop in Hb. It is worth watching the level to see if you can match the increases to any specific food you've eaten or chemical you've been exposed to. I have heard of everything from being exposed to cigarette smoke to the scent of dryer fabric softener sheets setting off hemolysis.
However, bilirubin can be affected by other things, as well. While looking for an answer for another member, I learned that drinking wine raises the bilirubin level, which explained his rise, as he had wine over the holidays. A note about that is that it is not believed to be harmful when caused by wine, as it is accompanied by a rise in antioxidant levels. Diet can also be a factor, and I suspect in the other case, that overindulging in holiday food may have contributed to the higher bilirubin.
While the higher bilirubin doesn't normally cause a problem, when it is high constantly it can lead to the formation of gallstones or more likely, sludge in the gallbladder. Many minors eventually have their gallbladders removed due to ducts being blocked by sludge.
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Hi Andy,
Thanks for your message.
I forgot to mention that I have also been very consistent in taking folic acid (4mg/day), vitamin B and Vitamin C over the last 6 months (alas, not so consistent in taking vitamin D!). I was wondering whether they would slighly boost my Hb levels, but they didn't, and to be honest I wasn't really expecting it!
With regard to Bilirubin - it's actually lower now, 23 (not 21 sorry!) compared to 35. Just slighly raised but nothing to worry about. I drink very very little alcohol and my diet is more or less always the same, regardless of the recent holiday period. So I'm not sure why bilirubin is lower now. But I understand that its level may vary quite a lot for a number of reasons.
Bilirubin is normally high in thals due to the high turnover of red blood cells. This can fluctuate depending on the turnover rate. [...]
While the higher bilirubin doesn't normally cause a problem, when it is high constantly it can lead to the formation of gallstones or more likely, sludge in the gallbladder. Many minors eventually have their gallbladders removed due to ducts being blocked by sludge.
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Just a quick update for those that might be interested. Please see my messages above for details regarding my Hb and other values (I don't have any more recent blood test values).
I have kept exercising consistently (running 100/150km a month) and I have managed to lower my 5k time to 18'58" and 10miles around 67'30'. This places me around the 68th percentile fory age grade (I'm 33 now). To put it in context , other non thalassemic friend of mine with a similar monthly mileage and age are running slightly slower than I am. This is comforting.
That said, I do notice a very strong trend - I'm not as strong as other people in longer races, where aerobic capacity is more of an issue. I can beat them quite easily over 1 mile, bit lag behind in 7miles races. I also suffer quite a lot from gastrointestinal issues after hard runs. And my stomach does not like junk food at all. My eyes also turn more yellow after an effort.
For those of you who want to do competitive sports - if you put some hard work into it, you will see good results (I have been improving constantly over the last 2 1/2 years). Be aware you might struggle when aerobic capacity is paramount. And you might need to watch your diet, live with an upset stomach at times, and generally watch for any signs of overdoing it. But you will most definitely get better.
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l-carnitine, a trimethylamine abundant in red meat, also produces TMAO and accelerates atherosclerosis in mice. see http://www.nature.com/nm/journal/v19/n5/full/nm.3145.html