Can Beta-Thalassemia Minor have symptoms?

[Bee Cham]

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.

[plaidkid]

I am in my early twenties and have had problems with being persistantly tired.  My hands and feet are almost always cold (in fact, they are right now), and I fall in and out of relatively mild depression.  I have been told that carrying the thalassemia trait has no obvious symptoms, but I've been poking around forums a little bit, and the symtoms I experience seem to be fairly common. I'm still looking for ways to lessen the intensity of these symptoms, but for me I've found that maintaining physical activity helps, as well as not oversleeping, or overeating.  The rest of my family takes folic acid suppliments regularly. God, puberty was a nightmare, but I am much less groggy and more in focus now that I am no longer growing. I'd like to hear other peoples' experiences with this.

[lilsm]

You know I've heard multiple times about minor not having any symptoms and I beg to differ. It's really frusterating to hear that there is no help out there for minor patients yet as we must all be making up the same exact symptoms since the doctors all contest that their are no known symptoms for minor patients. I'm 18 and I experience excessive tiredness and also the cold hands and feet which I never quite equated with the disease until now. I also suffer from dizzy spells and I was wondering if anyone else also had these.

[leelee lulu]

Hello All,

I am 27 years old.
I just wanted to say I totally relate to all of you.
I feel tired 24/7.
I get the common cold very easily and it seems to last forever.
If someone is sick and has a flu I'm bound to get it no matter what I try from herbal products to vitamins etc.
I get high fevers with the common cold.
I feel cold all the time.
I do get heart palpitations from time to time and they just come out of know where.
I do feel a tad frustrated as there is no drug for this condition.
A lot of friends and family do not understand this condition as a result can never understand/relate to me feeling the way I do.
#1 Always feeling tired.
I want to do things and go out and have a great time but there are times I have no control over it and I just need my bed and need sleep.
I find that this does not get better as I get older but has gotten worse.
I do relate and if any of you have any questions please feel free to add your additional comments  to this post and I will reply back to you asap.

leelee lulu

[leelee lulu]

Hello All,

I am 27 years old.
I just wanted to say I totally relate to all of you.
I feel tired 24/7.
I get the common cold very easily and it seems to last forever.
If someone is sick and has a flu I'm bound to get it no matter what I try from herbal products to vitamins etc.
I get high fevers with the common cold.
I feel cold all the time.
I do get heart palpitations from time to time and they just come out of know where.
I do feel a tad frustrated as there is no drug for this condition.
A lot of friends and family do not understand this condition as a result can never understand/relate to me feeling the way I do.
#1 Always feeling tired.
I want to do things and go out and have a great time but there are times I have no control over it and I just need my bed and need sleep.
I find that this does not get better as I get older but has gotten worse.
I do relate and if any of you have any questions please feel free to add your additional comments  to this post and I will reply back to you asap.

leelee lulu

[Suebe]

I am 41 and have Beta-Thalassemia Minor along with my sister, my son and my mother also had it. I know exactly how you feel~each day is a stuggle being tired. My sister and my mother were also diagnosed with a low thyroid. I just had blood drawn again and they said my TSH level was low. Tsh is your Thyroid Stimulating hormone. But they said when your TSH is low that is usually a sign that you have an overactive thyroid which symtoms of that are the opposite of what we have. My Doctor has ordered more tests so I am waiting. I asked my sister to read me her TSH level from her blood work when she was diagnosed & it is the same is mine. She had been misdiagnoded in the past.
I have been searching the web to see if there is a connection to Beta-Thalassemia Minor & thyroid. I have only found one that connected the two, but I am still searching. I will keep you all posted, it would be wonderful if we call feel "normal"
If you would like to e-mail me personally my address is ***@****

[Kallikak]

i have beta thalassemia minor. I do suffer symptoms related to those of anemia(including fatigue). My sleep schedule is way out of wack. some days i sleep three hours, other months twelve hours sleep days with unusual patterns that do not fit a time schedule. i may also have something called restless leg syndrome. i shake my leg a lot before sleep due to the feeling of tense inner strain in my ankles and wrists. i always thought of the shaking as due to my liking to be rocked to sleep by myself but now realize it could be due to low iron. thalassemics have low iron. i also had a psychotic break at age 20. i dont think this has to do with thalassemia but the constant fatigue may have led to deep depression.

[Christineindc]

Well its wonderful to hear that I am not alone in the world... I am 35 and have lived my whole life tired!!! When i gave birth to my first daughter at age 22... I ended up needing a blood transfusion... and not because I lost alot of blood... Our blood cells will break down under situations of extreme stress... yet doctors still continue to tell me that Thalassemia Minor should have no symptoms.... I am always tired god help me if I should run.. I get so out of breath so easily. I get heart palpatations off and on out of the blue, My hands and feet (mostly feet) are always cold!! I used to get bad headaches but not as much anymore... I inherited this lovely trait from my mothers side of the family (Italian)... Unfortunately I have given the trait to all three of my daughters..... I will tell you from my one and only experience with the blood transfusion that I went from my death bed to instantly energized.. I felt better than I ever felt or feel... It was a temporary fix and I soon returned to my tired self... I would like to know if anyone else has scoliosis? Thalassemia is known to cause bone diformity during your youth... just curious if any of you have this as well..... thanks and be well

[Christineindc]

Well its wonderful to hear that I am not alone in the world... I am 35 and have lived my whole life tired!!! When i gave birth to my first daughter at age 22... I ended up needing a blood transfusion... and not because I lost alot of blood... Our blood cells will break down under situations of extreme stress... yet doctors still continue to tell me that Thalassemia Minor should have no symptoms.... I am always tired god help me if I should run.. I get so out of breath so easily. I get heart palpatations off and on out of the blue, My hands and feet (mostly feet) are always cold!! I used to get bad headaches but not as much anymore... I inherited this lovely trait from my mothers side of the family (Italian)... Unfortunately I have given the trait to all three of my daughters..... I will tell you from my one and only experience with the blood transfusion that I went from my death bed to instantly energized.. I felt better than I ever felt or feel... It was a temporary fix and I soon returned to my tired self... I would like to know if anyone else has scoliosis? Thalassemia is known to cause bone diformity during your youth... just curious if any of you have this as well..... thanks and be well

[FLAVIAN]

Hello excuse my french I'm glad to see that I'm not alone Here in France the doctors don't want to believe me They said ther is no need to treat this anemia but me and my sister (italians)are always tired(insult lazy ...)and need more sleep hours I have palpitations and this is my lab results:red blood cells:6.67 tera/l(norm4-5,70)hemoglobin134g/l(norm140-175)VGM63(norm 82-97)CGMhb 31.9(32-36=TGMhb20.1(27-33)hypochromia and microcytosis in important proportions THANK you to tell me if my results are the same of yours MARC

[batz111]

I am amazed at what I am reading.  I am a 50 year old female and have been tired all my life.  I have always stayed up late and needed to sleep a lot during the day.  I have Thallasemia Minor and thought I was just lazy because the Drs. said it has no symptoms. I also had some depression and anxiety attacks. My dad, brother and son have it, too.  They don't seem to get as tired as I do, tho. I can relate to that vision thing, too.  I wear glasses, but sometimes I just have a hard time seeing clearly.

[beesmart]

I am a 50 year old female with Thallasemia Minor. My father and brother also have this disorder. All of my life I have been plagued with tiredness and depressive symptoms. I now take an anti-depressant for the depression, which helps. The tiredness has contributed to a slow weight gain over the years from lack of exercise. I wish that someone could help those of us with this disorder to feel better on a daily basis. I have been warned to avoid iron supplememts as people with thallasemia minor can ingest too much iron and get toxic levels. You might want to consult your doctor before taking extra iron supplements.

[soulmatereader3]

RE:  Beta-Thalassemis Minor and Healing

Some of the solutions to the Beta-thalassemia issue are based on diet.  Eating rare red meat will provide the water soluble iron most needed in the high functioning systems of people with this condition.

Consuming rare cooked red meat, especially beef liver and other organ meat, will begin to heal a body that is non-alkaline.  The alkaline blood system has a blood tested pH of 7.2 or higher for the most energy possible.

Drinking 55 oz of water before one brushes one's teeth, and then no food or beverages for one hour, will begin to heal over  30 diseases.  

A diet of fresh raw fruits and vegetables will also provide that needed diet of 80% alkaline raw foods  needed to allow the body to heal from the inside  out.

Essential oils is another form to encourage the body to self heal.

I would offer this, those people with Beta-Thallassemis will feel more healthy if they increase the protein in their diet as  their brains tend to require more high protein foods.  

I would see these individuals with this condition as needing to rise in talents and gift development.  The key here is to let that "light" shine and use those intuitive abilities.

If one feels "stuck", or in a period of "stuckness", then these kinds of diseases will develop as a part of a rare kind of "mid- life crisis".

Study biofeedback, and using your body to heal from the inside out, and life will improve greatly.

I hope this has been helpful.

Love and light to your eyes and heart

Best Ken Bush

e-mail ***@****

[dmdesigner]

This is the first Web site I've found where there are people with the same symptoms that I have. I am a 32 year old male who lives in Seattle, WA. I have Thalassemia minor and suffer mainly from ongoing fatigue. I am ALWAYS tired, no matter how well I eat or what vitamins I take. Doctors tell me that I'm fine and "just need to avoid Iron and do some aerobic exercise." I would exercise if I had the energy to. It's comforting to see postings from people all over the world. It tells me that I'm not alone and that Thalassemia minor needs to be taken seriously. It took the medical community decades to realize that Chronic Farigue Syndrome is "real." It's seems that we have the same challenge with Thalassemia minor.

For anyone who would like to chat directly,
My email address is

***@****

Thank you.

[Teenytoo]

I hear you all and it doesn't get a lot better as you get older.  I'm 45.  Getting pregnant took 7 years for me and then it almost killed me.  Border Diabetes, Toxemia and premature labor.  Birth caused a vaginal hemotoma (I'm a real bleeder) Hemohorraged 9 days after birth from hormonal inadequacy.  Was so weakened that I got sick with Thyroiditis.  It caused a cyst on my thyroid and tyroid problems for years.  My heart palpitates and has other irreguar rythyms.  May require a devise to keep the rythym corrected in the future.  I'm foggy minded alot of the time even though I score high (mensa) on intellegece tests. (just can't spell worth a darn!)  I don't go to bed until after 2am and sleep for at least 10 hours in order to function.  11 or 12 hours is better.  I have insomnia part of the time. I have to take several supplements a day in order to function.  I'm going through peri menapause and what a trip!!  My muscles are overly flexable and bones are very tiny.  I bruise super easy.  Played catch with a football and my arms are so bruised that I look like a junky!!  I'm out of breath frequently but register at 100 % for oxygen level testing.  It takes me forever to get over illnesses normally.  I have found garlic and onion eatting and holistic tinctures with these and mytake mushrooms very helpful in helping me to fight viruses.  My lungs tend to get congested easily and I have constant nasal allergies which are helped by using Nasalcrom ( a cromolyn sodium solution) sprayed up my nose.  I have also been diagnosed with fibromyalgia which causes pain and stiffness.  I was bed ridded with this until I went off all pain meds and started to take supplement.  Metagenics is the brand of vitamins I'm taking.  Folic acid is a must. Minerals and Vitamin plus extra calcium, and evening primrose oil. My gallbladdar is acting up so I've eleminated black pepper and excessively greasy foods.  My kidneys get overstressed easily so I can't do more than 6 glasses of water a day.  Remember that Talassemia usually gives you low oxygen to your organs no matter what the readings to measure oxygen levels. This means our organs are more stresses than "normal" people.  It accounts for the dizziness and short breath..also that cloudy thinking.  It causes an inner ear incongruency between fluids that can cause ataxia (dizziness).  I had to use meds in my 30's for that problem to increase the oxygen cuz I couldn't even drive in a car or even turn around while walking with out getting "sea sick".  I've had periods of bloating but not so much now.  My metabolism has slowed down so much that if I eat more than one meal, I gain weight.  So I have to eat extremely small meals and only one that's normal. I've done a lot of research and I can't put it all into this e-mail.   Remember not to over do the Iron supplements because it can deposite like crystals in our veins and cappilaries and cause tearing therefore bleeding internally.  My e-mail address is   ***@****     Don't forget that God helps!

[thalaminor]

Hi all,

I was diagnosed today. This is the first time I've even heard of this disorder. Needless to say, I've been mis-diagnosed (anemia) all my life. At the ripe old age of 40, my hemotologist finally got it right! I have been tired ALL my life, cold hands and mainly cold feet. My sister complains about the same thing. I called my brother in Florida to tell him and he interupted me and started completing my sentences about being weak and tired. etc. So it seems all the kids got this from dear mum & dad. SHEEESH! Gee Thanks! How about giving us something we can really use...like ... hmmmm I don't know MONEY??

Let's not even talk about when my monthly cycle comes, some days I feel like I can't get out of bed, I'm so tired! It's reasuring to know that it's not "in my head" there are others out there who feel this way.

I would like to start a support group. Any ideas? email me

marilyn_romain***@****

[Shelly04]

Hi,

I'm 22 and also have many of the same symptoms. I'm aways tired and have been through major depression due to my constant fatigue. I also have some trouble breathing after exercising and feel dizziness. I've been through many tests but doctors have told me that it's all in my head.  I wish something could be done to provide more awareness about the symptoms of thalassemia minor. I think more research needs to be done. Perhaps we should all get together and form a group or organization which promotes further research and awareness about this issue. Feel free to e-mail me at:

***@****

[Babycakes1]

.

[AussieChicka]

I am a 24 year old female from Sydney Australia, and i just want to say that i can relate to everything that all of you have stated as symptoms of thalassemia Minor.

When i was 12 years old i began getting these really intense migrains and i would loose my vision to the point that all i could see was like a white sheet over my eyes, i though i was going blind...this happened every few months or so and the only thing that would make it go away was me going to sleep in the darkest room possible for a good 10 hours or so......i had a number of tests at the childrens hospital and specialists e.t.c.....blood test, urine tests, ultra sounds, you name it and all the doctors said that i was perfectly fine blah blah blah i just had anemia which was no big deal.

(Not a big deal that my poor Mother was  freaking out cause her 12 yr old daughter would say 'Mum i can't see a thing')

It wasn't until i was 19 before they confirmed i had thalassemia Minor, mind you i specifically asked to be tested for thalassemia Minor.(because my Dad had it)....All the other blood tests i had prior to that never picked it up....

The doctors said that me being tired and dizzy had nothing to do with it...but after hearing you guys share your symptoms, i don't feel alone, or can now know that it is not my imagination...and these are genuine symptoms!!!

Thanks Guys!!!!!!!!

[AussieChicka]

;

[alc]

Hello everyone.

I am 28 yo and I have thalessemia minor, as does my father. However, I have never experienced chronic tiredness as most of you in this thread have. I was one of the best athletes in high school, winning several awards for track&field, swimming, etc. Today I am still extremely energetic.

However, I have always been pale, which is most likely due to the thalassemia. I also have a tendency to feel depressed, which may or may not be related.

This extreme tiredness you all experience could probably be a result of some other illness. Perhaps sleep apneia? It can cause a lot of the symptoms you have described. I know this because my brother-in-law suffered from it.

I wish you all the best.

[SabaD]

Hi Everyone.  Glad I found this forum.  I was diagnosed with Beta Thalassemia minor yesterday.  Went to the doc. for cyst on my ovary, had to take a blood test to find out if I have an infection, was diagnosed with minor anemia, additional blood test confirmed that anemia was due to Beta T Minor.  I am 26 years old.  For the past year or even more I had been feeling very tired, but lately it's at a point that it's sometimes even hard to sleep at night.  My Gyno has referred me to another doctor wihtout much info. on this issue because she does not specialize in blood disorders; so I had to do some research myself before I could see a specialist.  From my research I found out that BT Minor causes mild anemia which leads to fatigue, therefore yes, it does have symptoms.  

My question to all of you out there....my husband and I plan to get pregnant next year, do any of you know if Beta Thalassemia causes any complications during pregnancy or to the child?  I already feel so tired that I don't even know how my pregnancy is going to turn out because pregnancy on it's own can cause tiredness.  Also, I started taking multi-vitamins last week and that seems to be making my symptoms worse, could that be because of too much iron?  Anyone else felt this way?

My email me ***@****.  Good luck to each of you.

Saba

[portakal]

thank god i found this.22 male from turkey.got it from grandpa but he doesnt have any of these symptoms,even my father doesnt.they are successful people in politics with great health and energy.but i get tired easily,i get up very hard in the morning,i am pale and i usually forget important things like numbers,names..i cannot remember things i am supposed to and i get depressive because of this.sometimes i have problems with speaking or finishing my sentence and it really makes me crazy.i dont know if its related with beta-thal.minor but the worst thing is the puberty problem.i look younger than my age and i am very unhappy about it.i have been diagnosed last month first.now,after reading this forum,i dont know if i should be sad or happy.
***@****

[oscarpapa]

Hi.
I am 54 yers old man, worked hard all my life, no sickness or anything up to when I hit 52. Pulpitation.
Test after test specialist after specialist...they have found out I am healthy as an ox.
My family doctor ordered a full blood test for my question and i found out I have this Beta Th...whatever.
I did a research on the NET and found a Chinese study that is saying the problem lies in the kidney.
The kidney is responsible for the building of marrow and that is causing the problem.
Anyway; my conclusion is to handle this "misalignment of geens" from my body I have to change my diet.
Just for curiosity I have changed it for only 2 days and the result is: more energy.
Still short on breath climbing stars but will get better after some workout.
So guys don't give up; we can handle this.
The scary part is the pulpitation; I never know if it was my last heartbeat or not....just have to live with it I guess.
Here is a link to the study:
http://www.itmonline.org/arts/thalassemia.htm

Godd luck to you all!
Hose

[Shelly04]

I was diagnosed with thalassemia minor about a year ago... I'm always confused, extremely tired and depressed.  I also feel really dizzy sometimes and have trouble breathing. I've been to many doctors in the past but since my oxygen level is at 100%, they think I'm imagining all of my symptoms.. when I was younger, I would get dizzy very easily to the point where I thought I would faint.. I went to many doctors but they all thought I was crazy because they couldn't find anything wrong with me..then I started taking clariton (allergy medication) and the dizziness decreased somehow.. thank god!!..

but now... the most irritating thing about the thalassemia trait for me is the depression.  I hate not being able to think clearly... I'm always tired.. and without antidepressant medication, I have trouble functioning due to a lack of energy which triggers major depression in me... I hate relying on medications.. especially depression medications which effect the mind and body... I'm 100% positive that if I wasnt constantly fatigued and had more energy, I wouldnt need these antidepresant medications....I pray that more research is done on this disease to help people like us...