WELCOME TO THE COMMUNITY: This Patient-To-Patient Community is for discussions relating to Bleeding Disorders. There are many types of blood disorders, including: bleeding disorders, platelet disorders, hemophilia and anemia.
I got the results to my beta thalassaemia test half an hour back. And I am tested positive. I am 22 years old and I am always tired... Also, I have always been a sick child. I have read through all the posts and realized that folic acid is good. I will take it and post my results.
beta thalassemia can most deff have symptoms. Doctors and others will tell you that it doesnt but they have finally done a study proving that more than half the people with beta thalassemia minor have symptoms. I suggest you go to thalassemiapatientsandfriends.com and look under thal minor, it helped me to learn a lot of information that I did not know and it has a link to the study.
my grandmother was placed on iron infusion weekly for over a year and it ended up killing her of iron toxicity of the liver. She died a very painful death and we could not understand because they told us she had scerosis but she had never drank. It was not until I went to the same hemotologist and he tried to make me start the iron infusions and got very mad at me because I refused and made him send my for a transfusion. I then looked into what my grand mother had been recieveing. How can a blood specialist do this? He killed my grandmother and she died a horrible painful death.
I've read most of the posts. I can't recall anyone commenting on the younger-than-we-are look, it's really true. I am 44, I am an Interior Designer with a full service Wedding Business, I work 6 days a week and when I give my age when asked people are always amazed. No one thinks am past 32, amazing, and I don't particularly take extremely good care of myself. So thanks for the info.
To the general community, I live in the Caribbean so am always tired but I have learnt to work around it. When am tired I rest. Unlike most of you my count hardly ever gets to 10 I maintain an 8/9. Red wine or Brandy helps I don't know why but it does, so I indulge about twice a week.
I live and try to enjoy every day am able to get out. So happy to have found you guys.
Many of you are the most depressing people/group/ weaklings I have ever seen in my whole life. Thal minor has it's benefits. You all inherited this from ancestors whos body's evolved to fight the malaria disease which is why your red blood cells are oval shaped. You guys are all weak and lazy due to your weak mindedness about this so called disease. Workout hard eat healthy and your body/ energy will reward you. Continue to moan and groan all day you will remain a weakling. Be happy you have eyes/ feet/ and arms. Be happy you wake up everyday from your sleep. This has taken a negative placebo effect on you all. Your mind is in your control, regain it or you won't have anything left.
Thank you for sharing those stories, it is such a relief to know I am not alone. I can relate to a lot of those symptoms. I am 33, have always needed lots more sleep than the average bear and I find it very hard to go out at night and have fun with friends. I seem to catch every cold that is going around and do not recover for ages. Last year I was sick for 3 months. I have also suffered in and out of mild depression most of my adult life and I have often wondered whether it is the thalassemia. It is quite frustrating that doctors are dismissive or ignorant of what it is like to have it. I am lactose intolerant and vegetarian and would love some informed advice on diet. I have found a low GI diet has helped with tiredness. My twin sister and Nanna also have thyroid issues and thalassemia. I wonder if there is a link.
im so happy to be finding this here..im a BTM diagnosed since i was 16,i started feeling weak very easily in school till i had to stop all of my activities even gave up so many activities,and im still suffering til now,im 23.ive been to numerous doctors and they all tel me that thall trait isnt suppose to be causing these symtoms (symptoms),i get migraines almost every week,get fevers so frequently,and towrds the end of the day i get so tired,that i can barely even lift my arm up ..and also,im very worried as sometimes i get these anemic attacks in episodes,where i get too weak till i need to go to a hospital to get infused wth fluid.im sick n tired of being sick,this is very much disturbing my daily activities..i wish i can get help...
It is worth investigating the Chinese approach in some depth as well as following the advice here about Folic acid etc. From a Chinese medical perspective thalassaemia trait is a bone marrow issue and there are strategies within the Chinese system to energise the chi - life force - in the bone marrow. I recommend finding a good acupuncturist (word of mouth), investigating Tai Chi and Chi Kung, especially Bone Marrow Washing Set. Also check out Agama Yoga, a taoist approach to using yoga to energise the body. Don't wait for conventional medicine to do anything about thal trait as there is no priority given to research in this area and you will be fobbed off with iron tablets that may not be appropriate for you.
I also went through similar problems at school with exercise - the level of ignorance among the teachers was shocking. As an adult I have devoted myself to finding forms of exercise that are appropriate and beneficial.
I recommend, in no particular order, walking, 5Rhythms dance, tai chi, yoga, salsa, cycling, swimming, light weight training and rowing, elliptical machines. I have also found much benefit in African healing dance and Indian classical dance. Enjoy the journey of healing!
This is a very unhelpful post - as if everyone were the same. You are lucky that you are not adversely affected by symptoms, but many people are, you just don't have the empathetic ability to put yourself in their shoes. I am surprised as a pharmacist you have nothing more constructive to say, but then this approach from the mainstream medical profession is one of the reasons this forum exists.
I also recommend two books about Chinese dietary therapy: Healing with Whole Foods by Paul PItchford, and Longevity: The Tao of Eating by Aileen Yeoh. The Chinese approach is not a quick-fix but by changing your dietary, exercise, and thought habits over a long period of time you will build sustainable health support systems into your life and may even end up with better health than your non-thalassaemic friends who will have burned themselves out!
I am 44 years old, i suffered minor BT, already 6 months in the year I had a very severe anemia, fatigue, frequent infections in the body so that my white blood higher than red blood.
I struggled from childhood until this year to work hard and live life like a normal person, but I admit to 6 months, I almost gave up because I sometimes can not get out of tdur to do the right thing I could do, I need help from others, every week I need medicine to get back to work and within one month I am more in bed than my office to work.
until I found this post yesterday, only 2 days I read the testimony of friends - friends turned out a lot with me to struggle with the disease and live a normal life
thank you everyone who wrote in this post
God Bless our
Hi, im 20, thalassemia minor, detected it only 2-3 years ago. the doctor told me that there wouldnt be a problem when im exercising so i've been taking part in sports competitively since i was 13. i too experience breathing difficulties and dizziness when im being pushed too hard in fitness and when i have insufficient rest time. my period's also always early and i always look pale recently. it seems to have gone so bad to the extent that im unable to sustain a run of more than 2k if my starting pace is too fast. im really puzzled if i should continue my training because i really love the sport but i dont seem to be able to last long enough during the game. :(
apologies from me for any negativity felt by readers...I was putting myself in the hypothetical shoes of someone recently tested positive..if reading the posts this person may have become anxious psychosomatic repercussions.Thank you all for your valuable informative posts. Xx
hey i feel you im over people telling its in my head im always so tiered and if i could sleep all day i would learning at work is a challenge also and at time i think that people look at me like im thick but if they only new
I got my full blood count 3 years ago and was confirmed as a Thal Minor. I brushed it off aside like a man, but those symptoms couldn't seem to avoid me.
1) After sprinting exercises, I always took longer to recover from the panting and had giddiness without fail.
2) Mild depression, I always thought I was developing negative thoughts out of the blue was the cause of a broken family. But now I know.
3) Tiredness. I was reading the first page and I laughed...now I know why I feel so tired my entire life. It is normal to feel this way.
4) Cold(which never seem to go away). This is the most annoying trait! I get this every Friday!!! When the weekends are here, most people get to enjoy it! But I have to rest in bed, eating medicine. Whew...
I am 45 and during a medical check up, I was told that I might be suspected of having Thal. I am surprised as I have two daughters at age of 11 and 9 and had undergone all medical check ups during pregnancy. No doctors had told me that I am having Thal. Can I have Thal at this age. I do not have any symptoms. I eat well and do not have headahces or any pain what soever. Please advise.
You should maybe think about taking creatine, I'm also a Beta Thall, I'm 50 years old and train at least 6 times per week, body pump, cx works and free weights, I use creatine so that my muscles don't tire so easily and I also supplement this with a 50/50 mix of dextrose and malto dextrine dissolved in water, it really helps me and I have a very fast recovery time.:)
Hi Jack -
I was diagnosed last year, now 32, after years of Drs telling me to take more iron due to anemia. The iron was giving me so many stomach pains and problems I was referred to a gasto dr. She was actually the one that figured it out finally and referred me to a specialist. All my life I've shared the same symptoms - as well as recently some uncomfortable joint pain and lack of stamina while exercising. Thanks to everyone for sharing you info!
Just compiled a comprehensive list of 'symptoms' I experience (yawning as I do this). Please feel free to comment.
Shortness of breath
General weakness at times
Coldness – hands, feet, body
Blurred or foggy memories at times, brain fog, grogginess
Susceptible to getting fevers
Colds - takes long to recover
Hot days = low blood pressure = feel faint
Like to eat ice
Dark under eyes
Low blood count
Extreme dislike of stairs!
LOVE to sleep!!!
General crankiness / mood swings
Joint pain, especially back pain
Random numbness and tingling in body parts
Love oranges / mandarins
Difficult waking up in the morning
Cant stand still for long
Muscle cramps – especially calves
Thirsty a lot but cannot handle a lot of water
I used to get colds every year, no fail and take weeks to recover but since 2 years ago haven't had a single cold or fever!!! Have been having 1/2 onion and 2 cloves of garlic with 3 dinners a week during winter and this seems to have worked. Please try and let me know if this works for you too :)
Your post is disturbing and I think you have an uncompassionate self absorbed soul who should not spread your negativity onto others. I cant speak for others on here who have posted, but "lazy" has never been a luxury I could afford. And as far as being protected from malaria as a positive for this life threatening blood disorder, well **** off! I don't live where the perk of being immune to malaria does a damn thing for me. people are on this site to get answers, to feel we are not alone etc. I wish you a life of good health because its painfully obvious you couldn't handle what most are going through that have posted here.
I was recently diagnosed with having thalassemia minor after doing genetic testing for fertility. No one in my family has this that I know of. I have never had anemia either but do have a lot of other symptoms that many of you have such as tiredness, shortness of breath, severe headaches, sensitivity to light, joint pain, muscle pain, sleep a lot, heavy periods, mild depression, bruise easily, always get a cold or sinus infection and take a long time to get over it. So I am just realizing that these symptoms may have something to do with this recent diagnosis as I read your posts. I am in my first trimester of pregnancy and am concerned because the doctors have not had any concerns of me having thal. They even prescribed me extra Iron which I read on here isn't good for someone with thal. Since the pregnancy I have been exhausted...slept for two days straight and have had lots of muscle pain recently.
I have Thalassemia Beta Minor and have nearly no symptoms. According to research 1 in 4 children who have one parent who has thalasemmia will not have it. It is possible that you are lucky or that the symptoms you are getting are from something else xx
I'm still in school and i have Thalassemia Beta Minor too and I have realy bad joint pain (to the extent that I have to get my mum to help me walk, get dressed etc.) and I am also very tired and this also effects my weekends etc. Apparently there is nothing you can do about Thalassemia though...
Keep your head up :)
I'm only 13 and I have Beta-Thalassemia Minor and get horrible symptoms, you're not alone trust me. Don't be scared, you just need to know how to look after your self right. I only found out that I had BTM after getting a blood test this year, I thought that I was the only one at school who couldn't do the Cross Country run (I thought I was just so unfit) but it turned out that I was feeling faint, tired and short of breath etc. Don't think to much of it and just get on with your life!
I'm only 13 and I have the same problems at school. During winter we have 'Cross Country' which is where we have to run like 5 Kms but because of my Thalassemia I breath really loud like you haha and I also get dizzy, cold, out of breath, panting like a dog, and on one occasion I fainted... I also attend full day school and I have to get up at 6:45 am to get there on time and by the time I get home it's 4 pm :(. On weekdays I come home from school and have a 3 hour nap and then eat dinner, do my home work, music practice and shower and then I only get to sleep at about 11 pm. I am the music type unlike you and I have to be in 2 ensembles which one of them starts 7:15 in the morning which makes me so tired and fatigued. On weekends I barely go out anymore because I am so tired and feel unwell.
hi all I am on my third pregnancy and just found out I have BMT and supposedly graves disease. I love to sleep, I get pains in the center of my chest just about once a year, serious allergies from april to may beginning of June, migraines that are random and do not allow me to function. Im always cold and this last year suffer pain when my body touches anything cold especially my back. As most of us do I have discovered ways to cope with my different issues. But I always knew something wasnt right and the docs cant help me. Thats my issues but here is my solution! I did the daniel fast for 30days (not easy) but i felt amazing lots of energy! I maintain a vegetarian diet afterwords for 6mons felt good but nothing like that fast. I have since been on a quest to find a health natural way of life. I found yoga to be the greatest physical and mental fix. I found vitamins also help. I started selling them due to my personal response my whole family has benefited and i didn't even really notice my daughters eczema was non existent, a lump in my husbands hand went a way and my oldest daughter no longer looked sick. I am going back to my vitamins after this diagnosis and reading all comments here thank you all for the reassurance that i wasnt going crazy. I hope I can help all of you who are willing to try a different approach. My vitamins www.shop.com/gardners and I can be reach at ***@**** even if its just to chat and relate. Have faith and keep a positive attitude toward this thing called Life. much love Tannj
Thank you so much for your post! I do have thalessemia minor but my only concern is my rather high ferratin level. I do watch what i eat- so if i am eating foods high in iron, i will have dairy or black tea with the meal so it slows down the absorption of iron. Is this something that I need to worry about? I do look young for my age and now that you mentioned this trait, I now know which of my parents has this gene- my dad is 87 and looks much younger. Anyway, if you wish you can reply by email - belle.***@****. Thanks so much!
Hello Amoobaa, I read you comment and I see that we both have the same aches and pains in our joints and bones like sudden sharp stabbing pains daily and I also get dizzy when I stand up. I was recently diagnosed with Beta Thalassemia Minor. I have to take 50 grams of Folic Acid daily. Do you take any Iron or Folic Acid Supplements like me? How long have you been feeling the aches and pains and feeling dizzy; and when where you diagnosed?
And I also this you should check for Thyroid and Diabetes. I thing it is a great IDEA to forming a BTM awareness thing.
Chill out. I'm sure many people here are very positive, its just that here is a good place to share symptoms and have a little moan together. Its quite nice to discover other people who fall asleep and the drop of a hat! its also a little bit funny when you really think about how many people are cursed with insomnia! Despite this 'condition' I have been able to tour and play literally thousands of concerts (see www.peyoti.com) but I must confess I suffer from all the symptoms described here and the tiredness can be a real killer, especially, after concerts parties when I end up crashing really early (sometimes). So, no… its not all bad and nobodies saying it is… ,-)
I could not accomplish my days work without stopping my truck and recovering for a period, sometimes two or three times a day, and over the last couple of years the hours at work I could manage have reduced from 70 to around 60 hours per week.
My left thyroid gland was taken out around two years ago. I think it stands to reason that th also caused the bad car sickness I used to suffer from, but not my brothers and sisters.
Awesome music! Thanks for sharing. You must have killer schedule. This is inspiring. I am TBM carrier and have two kids who are also. I am finding it affects each of them differently. But not altogether a bad thing. I have learned to cope and helping them to find their way. Condition is manageable. I found iron does help get me over energy humps when I don't eat well.. I almost never get sick. And I do look much younger than I am. Bonus!! :)
I am 60 years old and have known I had thalassemia since I was 20. I have lead a very wonderful life. I have five children and now 12 grandchildren. I have what has been described as "major Minor" beta thalassemia. I had my spleen out when I was 17, and several other surgeries since. My ferritin iron level was very high last year and they started taking a pint of blood every month for a year.
I guess what I am trying to tell you is that you can live a very good, Normal life with thalassemia. You can have children and they will have wonderful lives. Of my five children I have two with thalassemia and one who is a carrier and he has passed it on to one of his daughters. All my children are very intelligent, wonderful, caring individuals who value their lives.
Please don't let the diagnosis of thalassemia stop you from doing anything you want to do. I know I didn't let it slow me down. Enjoy life! It is a gift.
Your comment is silly, at best. Sickle cell anemia also "protects people from malaria" as you state, however, it isn't without consequence. The same is true of beta thalassemia minor. If you are a pharmacist, you should be familiar with PubMed. A quick look demonstrates that people with BTM can be symptomatic and may experience significant complications (e.g., mild hypochromic or microcytic anemia, proximal renal tubule dysfunction, fatigue, bone pain, muscle weakness - have all been associated with BTM).
You are a nasty and ignorant person who lacks even the smallest degree of understanding about genetic variation and prevalence in a population. There are numerous symptoms associated with BTM that can negatively impair a person's quality of life. Genetic mutations can become more prevalent when it confers survivability for a population in a specific environment. This is the case for both beta thalassemia and sickle cell, which confer some resistance to malaria in individuals with these mutations because it negatively affects red blood cell development. This results in greater/more rapid destruction of altered RBCs and fewer malaria parasites being able to complete their life cycle. This confers a selective survival advantage to carriers, however, it is a genetic trade-off and has consequences to the carrier that can vary depending on the type and severity of the mutation. Try to educate yourself a bit before posting such an insensitive, nasty comment.
I'm 48 years old. Was diagnosed with Thalassemia minor 32 years ago (Greek). One of my sons just got diagnosed with it today. My other two kids didn't get it. I have been low energy all my life, had trouble in college with being able to focus and retain information, and also had severe dizzy spells in college. I can sleep until noon. Three healthy and great pregnancies. I have never been depressed. I have a great immune system - pretty much never get a flu or cold. My hands and feet are cold all of the time, but I have very low heat tolerance - you would think I am drunk when it is really hot outside, the way I talk with slurred speech and stumble when I walk. Was diagnosed at age 47 though with Osteoarthritis, despite the fact that I rarely exercise and couldn't have worn out my hip joints (too tired to exercise, except I enjoy skiing in the winter).
I have the disorder too and I am nearly sixty but look more like forty. Very pleased with this side effect, however, I have had pain in my knee and feet since a child. My mum told me it was growing pains, and she had them when she was growing up too. (She was Italian). I pass out in the heat, and have done this since early childhood. I am not a hypochondriac and have a high level of pain tolerance. I have lots of headaches and sometimes have migraines that are so bad the doctor comes to our home and gives anti nausea injections because I can't move without vomiting when these occur. Now, I have arthritis in my jaw, Back, hips, neck, knees, ankles and hands. All have been confirmed through X-rays. I have always been very fit and played lots of sport. My children also have the disorder and they have similar traits but each is different. So you can't assume all of us are hypochondriacs
I am 22 years old and I was recently diagnosed with beta thalassemia minor.The doctor says its genetic but none of my parents have it. I also have an enlarged thyroid gland. I am always tired and suffer from shortness of breath. Its impossible for me to climb stairs. I sleep a lot which is very unusual..and I eat a lot as well..all kinds of food but I cannot gain weight. I cannot take the sunlight and I tend to blackout every time I try to work a bit harder than I usually do. I feel dizzy a lot. Its very hard for me to attend classes as I stay extremely tired after the journey. I am not taking any kind of medications or treatments at the moment. I was taking iron tablets but I stopped it when I heard its not good for the liver.Please let me know of any suggestions..
Now I am shocked...I am thalassemia minor (treat) ...doctor tell me its no problem for you...BUT....all the time I was trying to find out why I have some unhealthy things like :
* sleeping 13-14 hours but allways wake up so much tired,
* Tired when I do sport, also tired when I dont do sport...?
* so tired , I am thinking my heart is going to stop,
* get easily ill.... bad Immune system
* my hands and feets gets so cold like ice, nobody can touch,even summer,maybe I have bad blood circulation, maybe its BTM
* Difficulty concentrating
* low blood pressure
* fall asleep everywhere,everytime (ones I feel asleep wake up after 25 hours with mammys call :s )
* Dark under eyes ,expecially when I sleep 7-8 hours, when I sleep 4-5 hours all my face get dark...I really look and feel unhealthy
* Bruise easily
* So looking young? me too. This is because of BTM? Have the same... I am 28 but people think I am 16-17 years old.(I am female ,this is the only good sympthome.
Doctors telling you are not sick. If our blood cells and values are different so this must have bad results. So why told the doctor its not important?Everybody has similiar problems. I have so much trouble, I spend all my time with sleeping, other time to wake up...I am master student, I need time to study..If I am not like the other people so how can doctor say you ar not sick?
I didnt take care of this long time, now I am at the end of my power again....trying vitamins, doing etc....I lucky to find this site. I will start folic asit...Is there any other methods which helps to increase our quality of life??
I'm 63, mother of three girls--one also carries the trait form. We have all the symptoms we're not supposed to have--won't reiterate. The interesting thing--have had a couple of "events"? where I finally felt normal. Two years ago I was hospitalized with acute ideopathic pancreatitis--16 days! I received daily injections of B-12, and was also transfused. What followed was the best year of my life. I had energy, lost weight, my skin was great, I stopped losing my hair--and the best--I have had NO infections in the last two years--and I've spent the last 25 years living (if you can call it that) from one round of antibiotics to the next. In the last few years, the infections just got worse and worse till I could expect pneumonia at least once a year, bronchitis, et al.
As my old symptoms began gradually to return, I researched, and was amazed at how much more is known. Started experimenting with diet, supplements, the B-12 and iodine protocols. All helped, but now I'm back to the beginning--the beta thal. Could one transfusion have given me such relief for over a year? Anyone else have experience with transfusion?
Yes, not supposed to take iron or get transfusions--the reading is pretty scary, but wow, is that what normals feel like all the time? It's a quality vs quantity thing. I'm willing to experiment for a better quality of life.
Haven't seen anyone commenting on fetal hemoglobin. The theory is if you're expressing fhbg, your beta thal symptoms will be much less which would explain why my sister with thal always felt so much better. There are things that increase fhbg, green tea, folic aid (I'd strongly recommend metafolin), some Chinese herbs, etc. Phytic acid also supposed to help some folks. Vitamin D is usualy deficient in thals. Carnitine is helpful, magesium. Fetal hemoglobin expression can (like most things) decrease with age, thus thals who've never had issues may find themselves experiencing new symptoms.
There are a wide range of symptoms--I've seen minor/trait broken into minima and minor. There is a more severe form called intermedia. OMIM lists almost 600 thal mutations. Minors who also carry an alpha triplication (or quaddruplication may need tranfusions. These polymorphisms (snps) are "new" and most physicians will not know anything about them. 23andme is a good place to get tested, but you'll have to do the footwork yourself since the FDA won't let them give results in layman's terms, just the raw data. Challenging but doable.
It's possible to also be iron deficient and beta thal. There are test result comparisons online (I think there's one at thalpal.com) that help differentiate between the two so you can help your physician distinguish them.
Eating clean is always a good idea, but I've been following the best diet of my life these last two years, and it doesn't seem to be stopping my inexorable slide. Ditto supplements. I know they're doing something, because when I miss for a few days I really start dragging. My gp, the endocrinologist, my hematologist--they have nothing to offer but a smile and a shrug--and they think everything I've tried is a waste of time and money. What I think is that anyone who wants answers will have to find them for themselves.
I have been diagnosed with Beta Thalasemia Minor since I was 5 y/o. I am now 58 y/o. I have been suffering with pain (aching) in different areas since I was @35 y/o. Doctor always discounted Thala. as being cause but couldn't find a cause so called it fibromyalgia. I am now suffering with leg pain constantly for @ 2 months. This week after stating another work up for lower back pain & leg pain, a doctor told me he suspected Thala. & I definitely didn't have Fibromyalgia. I wondering if anyone out there has had similar issues & any successful treatment.
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