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Can Beta-Thalassemia Minor have symptoms?


I am 22 years old and have been diagnosed with Beta Thallassemia minor by a doctor. All my life I have felt tired, had palpitations (When I was younger), flatulence and difficulty concentrating and fuzziness. I cannot really look people directly in the eye sometimes because its too hard on my eyes (it strains them) even though I have perfect vision. Doctors have told me that I need no treatment and that Thallassemia has no symtpoms. I go to sleep tired and I wake up tired. I can be tired after 12 hours sleep! Can I be suffering symptoms from my thallassemia. Does any one else feel the same way that I do? This is a little bit hard for me, but I don't want to complain.
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Avatar universal
Not MS! That's a typo. I did have a benign, but huge, life threatening brain tumor. I had surgery 10 years ago. Nearly died. That has contributed to my depression...
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Avatar universal
I just posted a long answer that disappeared, so I'll cut to the chase.
I'm 54- of course I've had BTM my entire life- all the usual symptom Ms- I recently started to do hyperbaric oxygen, and it has cured my depression, but I still tore easily...
However, I swim, hike and eat very healthy. I do eat too much peanut butter, which isn't so good! I should make my own...
I live in Taiwan, so it is affordable, and we have a good income- being expats. Still it's only $35 USD an hour. After 3, 1 hour sessions, my depression disappeared.
I had a glorious menstrual cycle, fuse being suicidal last month, I kid you not!
I also do Reiki. I'm trying everything I can think of to heal myself.
It's working!!!
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Avatar universal
Hi I have been diagnosed with BTM when I was a child but i just found out from my mom (I'm 18 years old). My mom has the same genetic disorder too. I've always wondered why I get tired easily and sleep a lot and i thought it was a low stamina but now i know its not. But I have been able to carry on with normal life relatively well, and doctors have also said it doesn't affect life to a great extent, but it depends on how severe the symptoms are on an individual.
My friends have always said i look pale and have a yellowish tinge in my skin tone. And my hands and feet get cold very easily too. After concentrating for a long time, I got dizzy and spotted visions but it disappears in about a minute. I guess the tiredness is worst when I'm exercising/playing sports and when I'm on my period, probably since I'm losing blood and I already have a low blood count (around 9)
And yes people have noticed that I tend to look younger than my age. I read up that BTM causes delayed puberty and lack of secondary sex characteristics so maybe that's the reason why.
I tend to fall asleep everywhere all the time too like people have mentioned here and I always thought it's cuz of laziness. I take regular naps in the afternoon and easily sleep 10+ hours in the night and i do feel refreshed afterwards though. i guess now that I know it's not laziness I can stop beating myself down for it, but I definitely don't want BTM to stop me from living my life and doing the things I love. My mom said the reason she didn't tell me earlier is because she didn't want me to blame things on BTM and I think what she did was right!
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Avatar universal
Hi I am from the UK and 55 yrs old. I had been diagnosed 20 yrs ago. It had explained bouts of sudden tiredness from being a teenager. To explain, I am feeling empty at this moment even seeing a doctor. I searched the web on the subject and found this forum. I must admit I have not experienced the symptoms that many of you
Have felt or feeling, however the forum has reminded me of the trait and maybe confirmed the reason of why I am feeling so low . Over the years I have tried to explain the condition to friends and family who don't or can't understand. So thank you people of the forum. Happy new year.
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I also have thalassemia minor I am always tired. There are days I get so tired that my body hurts so bad I have to go to bed.  I spoke with the dr. But they don’t know what to tell me.  It is terrible to be tired all the time.  Sorry others have to go though this.  
Avatar universal
Hi I am from the UK and 55 yrs old. I had been diagnosed 20 yrs ago. It had explained bouts of sudden tiredness from being a teenager. To explain, I am feeling empty at this moment even seeing a doctor. I searched the web on the subject and found this forum. I must admit I have not experienced the symptoms that many of you
Have felt or feeling, however the forum has reminded me of the trait and maybe confirmed the reason of why I am feeling so low . Over the years I have tried to explain the condition to friends and family who don't or can't understand. So thank you people of the forum. Happy new year.
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Avatar universal
Dark agent, (that name is very fitting btw) why say such mindless immature things to people who are hurting?. If you continue to be lazy and weak in your interpersonal skills, you will never be able to motivate or support those around you. Your words only show how uneducated and inexperienced you are.  What goes around comes around. Good luck with that.
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Avatar universal
Hi, I've been diagnosed with BTM since I was a child. all those symptoms people have been describing are exactly what occurs to me. At times I have driven home and I don't know how I even got home. Woke up , I'm in the garage and the car is in the garage! Back pain, joint pain etc for me was cause by gout. once I started figuring out what foods to eat, the joint pain etc has gone away. Enlarged spleen and gallbladder was removed. keeps the RBC at 8.8. It actually dropped to 4.0 at one time before the removal of the enlarged spleen. Don't always trust the words of "doctors" , they are human too and not gods. (There is only one true and living God) One doctor gave me an iron injection and I felt like I was going to die that night. Apparently it wasn't my time. Right now I eat vegetarian (tofu  being the main source of protein) I don't really like eating animals knowing that a life that was breathing , living, had feelings, emotions, etc. was killed so that I might live. If I do eat fish, it's fish caught (probably cod, never salmon) from the north Atlantic, and definitely not the farm raised chinese fish (since there are no regulations as to what feed is used to "farm raise" that fish) And of course, if I di eat a piece of fish, I would  have an attitude of thankfulness that a life was sacrificed so that I might continue to live. Also, I have high iron levels, which I have been told by a doctor that it is because the body is trying to absorb as much iron as possible. So thus, another reason to stay away from red meat. Hope this helps somebody. Remember, this life is NOT the only life. There is a far greater, longer life that awaits us after this life passes away. And to those who choose the better part will  find life everlasting and abundant joy, but for those who refuse, they will continue living in misery, always being thirsty, and never being satisfied.
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Avatar universal
Wow, I'm surprised that a doctor finally said he suspected thal.  I am thal minor, and have always had symptoms but was still able to live a somewhat normal active life, until this past year.  I am 43 and the fatigue, joint, and muscle pain has been relentless.  My immune system has gone to hell.  I've  also developed vasoconstriction in my feet where my toes turn red, purple and black, even development blisters.  Some docs say it raynauds, but all blood work is normal except my Thal.  My hgb runs between 8 and 10.  I know I've have thal all my life but something has changed, and I feel it has to do with our bodies getting wore down from the thal.  Everything has to work overtime, vital nutrients get destroyed etc.  it's a chain reaction.  If you got any answers from the doc as to why he suspected your thal, can you please share.  
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Avatar universal
It's called getting old, I also have BTM I'm 52, have pains everywhere, could sleep for an olympic gold medal, but I'm happy I don't have anything worse:-) :-) :-)
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Avatar universal
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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Avatar universal
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.
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Avatar universal
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??


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Avatar universal
Nice theory. The problem is that some of us could not understand why we could not compete with the rest of the world, until we were diagnosed. In other words, our symptoms preceded a diagnosis.
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Avatar universal
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..
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Avatar universal
Good one. I laughed with loving oranges and mandarins as my family used to hide these from me as I would eat them all the time. Lol!
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Avatar universal
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
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Avatar universal
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).
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Avatar universal
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.
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Avatar universal
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).
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Avatar universal
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.

MjoyingAZ
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Avatar universal
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!!  :)
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Avatar universal
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.
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Avatar universal
Hey i have symptoms like Foggy memory and laziness and these are killing me . I was very smart during school days and as i grew up i am feeling to become dull.  Do u have any idea and cure for this ?
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Avatar universal
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… ,-)
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