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...

[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...

[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...

[BlueyLuey]

Hi folks. I'm 19 and I was diagnosed as a Beta Carrier 5 years ago. I have Majors (one died at the age of 11, the other is 7 years old, alive and doing excellently) in my family and it's nothing new to me. I get periods of tiredness and I always got cold feet. A month ago something weird happened. I went to see the Doc cos I was tired all the time and all I wanted to do was sleep or lie down. No matter how many hours I slept, I still couldn't brush away the tiredness. I was given vits and changed the type of iron tabs I was taking. Still my Hb level didn't perk up. Usually it's between 9 & 10. It went too low (8) and it's like I became a Major overnight! Currently I am on blood transfusions and Desferal shots. I have had 3 transfusions within a month. The docs are baffled. I'm told medically it's impossible for a Minor to become a Major. I live in Australia and Thalassemia is not common here, at least not in Melbourne. But I'm Maldivian, and Thalassemia is one of the most common diseases in the Maldives. I guess the little information on Thalassemia is getting to me. Anyone out there know anything about Thalassemia Trait turn into Thalassemia Major? If so, please e-mail me at ***@****.

[BlueyLuey]

Hi folks. I'm 19 and I was diagnosed as a Beta Carrier 5 years ago. I have Majors (one died at the age of 11, the other is 7 years old, alive and doing excellently) in my family and it's nothing new to me. I get periods of tiredness and I always got cold feet. A month ago something weird happened. I went to see the Doc cos I was tired all the time and all I wanted to do was sleep or lie down. No matter how many hours I slept, I still couldn't brush away the tiredness. I was given vits and changed the type of iron tabs I was taking. Still my Hb level didn't perk up. Usually it's between 9 & 10. It went too low (8) and it's like I became a Major overnight! Currently I am on blood transfusions and Desferal shots. I have had 3 transfusions within a month. The docs are baffled. I'm told medically it's impossible for a Minor to become a Major. I live in Australia and Thalassemia is not common here, at least not in Melbourne. But I'm Maldivian, and Thalassemia is one of the most common diseases in the Maldives. I guess the little information on Thalassemia is getting to me. Anyone out there know anything about Thalassemia Trait turn into Thalassemia Major? If so, please e-mail me at ***@****.

[tony149]

Hi All,

It is amazing to see so many posts describing symptoms that I’ve been struggling with for my entire adult life.  I was diagnosed as having the recessive Thalassemia trait when I was about 19 years old.  I’ve always suffered from fatigue and headaches and occasional mild depression but just considered it part of life and never made the connection with Thalassemia since I was told that it’s asymptomatic.  Now I’m 45 and it’s just getting a bit old.  The fatigue and headaches are definitely interfering with getting on with life.    I’ve been on a mission to try to determine the cause and didn’t even consider Thalassemia until I came across this and other web sites.  It’s a relief to know this might be an answer, but the question now is whether anything can be done to alleviate the symptoms.  I do notice that I feel noticeably better when I eat red meat.  But aside from that, I’ve got nothing!  I’d love to hear from anyone regarding dietary changes (including supplements, especially iron) that seem to help.   Thanks and best wishes for good health to everyone.

Tony

[sarcasticgirl]

hey everyone..I am 30 years old and have suffered from most of the symtoms above..tired all the time, but have insomnia as do the rest of my family that carries the trait. I noticed that no one listed dark circles under their eyes..I knew at 6 months old that my son had the diease because of the dark cirles..my mother actually has the white circles, and I do mean WHITE. I was also wondering if any or all experience the opposite effects with meds (need to take morning instead of night or vice versa)or caffiene (it actually makes me more tired)I am writing a research paper for school and would appreciate any info...***@****. almost every time I get blood drawn,i.v's I passout..does anyone else? I am also trying to find out whether or not there is any link between b.t.minor and leukemia/ Lymphoma.

[lyoung403b]

i got diagnosed 7 years ago with beta thalessemia minor and then today the nurse called me today, and said i do not have thalessemia minor. then my doctor emailed me tonight, and said i do have beta thalessemia minor.  i thought at first it was a miracle from God. i am trying to have a good attitude about it as obvious a mistake was made.
my husband and i trying to conceive and i pray that his blood tests don't come back with beta thalessemia minor, otherwise we can't have a baby of our own.
all in God's time and place i reckon'
the only major symptoms i have is the my eye sight isn't very good in the dark and i'm tired on and off a lot, but especially in the evening. email me if you'd like at  laura.***@****
thanks for letting me share....
laurie

[La Shell]

I was recently diagnoised with Thalassemia minor also. As I read more and more about the symptoms mentioned in the postings it really concerns me. I also have suffered with fatigue all my life and depression also. I am 47 years old now and since my parents passed away when I was young, I have no idea who I inherited this from. I also have TMJ, tinnitus and problems with chronic muscle spasms. I would appreciate any input on this subject. You can email me at ***@****  Hopefully,together we can come up with some answers.

[jeffbon]

hello guys - 20yr old guy from malta..

not long ago i found out that my mother has the b-thalassemia trait so i did the test and found that i had the minor too..
with regards to the blood tests, my heamoglobin is 13.2 where it should be between 13.5-14.

its like everyone of you is complaining of tiredness.. well i'm not sure if i can call mine tiredness.. what i'm sure of at d moment is that i tend to get severe pain below d knee (front of leg) with walking which alleviates with rest...especially walking up a hill. there could b many reasons 4 this such as intermittent claudication - but since im quite young and i dont think i have familial hypercholesterolaemia + the pain is not in the calf..i dont think it is.  
since this condition cud b related, could somebody tell me if he/she has any symptoms of the sort?
possibly wot i think of is that my anaemia is comprimising the oxygen supply to my legs when im exercising.
nyways..tnx 4 reading and hope ill get some reply :)
jeff

[jeffbon]

hello guys - 20yr old guy from malta..

not long ago i found out that my mother has the b-thalassemia trait so i did the test and found that i had the minor too..
with regards to the blood tests, my heamoglobin is 13.2 where it should be between 13.5-14.

its like everyone of you is complaining of tiredness.. well i'm not sure if i can call mine tiredness.. what i'm sure of at d moment is that i tend to get severe pain below d knee (front of leg) with walking which alleviates with rest...especially walking up a hill. there could b many reasons 4 this such as intermittent claudication - but since im quite young and i dont think i have familial hypercholesterolaemia + the pain is not in the calf..i dont think it is.  
since this condition cud b related, could somebody tell me if he/she has any symptoms of the sort?
possibly wot i think of is that my anaemia is comprimising the oxygen supply to my legs when im exercising.
nyways..tnx 4 reading and hope ill get some reply :)
jeff

[jeffbon]

hello guys - 20yr old guy from malta..

not long ago i found out that my mother has the b-thalassemia trait so i did the test and found that i had the minor too..
with regards to the blood tests, my heamoglobin is 13.2 where it should be between 13.5-14.

its like everyone of you is complaining of tiredness.. well i'm not sure if i can call mine tiredness.. what i'm sure of at d moment is that i tend to get severe pain below d knee (front of leg) with walking which alleviates with rest...especially walking up a hill. there could b many reasons 4 this such as intermittent claudication - but since im quite young and i dont think i have familial hypercholesterolaemia + the pain is not in the calf..i dont think it is.  
since this condition cud b related, could somebody tell me if he/she has any symptoms of the sort?
possibly wot i think of is that my anaemia is comprimising the oxygen supply to my legs when im exercising.
nyways..tnx 4 reading and hope ill get some reply :)
jeff

[jeffbon]

hello guys - 20yr old guy from malta..

not long ago i found out that my mother has the b-thalassemia trait so i did the test and found that i had the minor too..
with regards to the blood tests, my heamoglobin is 13.2 where it should be between 13.5-14.

its like everyone of you is complaining of tiredness.. well i'm not sure if i can call mine tiredness.. what i'm sure of at d moment is that i tend to get severe pain below d knee (front of leg) with walking which alleviates with rest...especially walking up a hill. there could b many reasons 4 this such as intermittent claudication - but since im quite young and i dont think i have familial hypercholesterolaemia + the pain is not in the calf..i dont think it is.  
since this condition cud b related, could somebody tell me if he/she has any symptoms of the sort?
possibly wot i think of is that my anaemia is comprimising the oxygen supply to my legs when im exercising.
nyways..tnx 4 reading and hope ill get some reply :)
jeff

[supervin]

So relieved to hear that I'm not alone suffering from symptoms of Beta Thalassemia Minor (BTM).

I'm 19 years of age, and was diagnosed with BTM since birth.  My mother has it, and so have her all her sisters as well as my maternal grandmother.

In terms of appearance, possibly due to BTM, I have always had dark circles under my eyes regardless of how much sleep I get - it's really annoying when people keep telling me to get some sleep even though I normally sleep more than everyone else.  What's queer is that those circles occasionally disappear when I get the least sleep.  I have the darkest skin complexion in the family and can get tanned very easily.  People close to me can't help but notice that I seem to have a non-maturing "babyface" and that I look about two years younger than I actually am - great for women but it's not something to boast about especially if you're a guy.  I'm not sure if this has something to do with lesser effects of bone deformation that Major patients suffer from.

Symptoms-wise, I have always had the dreaded chronic tiredness/fatigue that nearly everyone mentioned here.  I used to sleep for 10 hours every day during childhood and I need 8 hours per night currently.  I also get tired easily and find it extremely difficult to wake up in the early morning.  My sleep patterns have never been routine - I tend not to be able to sleep until late in the night and get up just before noon or after.  I always seem to have this cotton wool feeling in my head, as if a cloud is trapped inside.  During exercise, I have always been least fit, going out of breath really quickly and having low endurance in strenuous activities like middle-distance running, due to tiredness.  In relation to depression, I have always felt less enthusiastic about life compared to others and pessimistic in general.  During childhood, I was like a complete introvert with extremely low confidence and highly emotionally dependent on others.  Currently, I tend to have emotional swings when I'm tired and have occasional crying outbursts towards people close to me.  Other than that, signs of depression have gotten a lot better than what I had as a kid.  About cold feet, I tend to get it a lot though it doesn't bother me at all.  In the past, I used to wear more than everyone else - in primary school, I wore 3 to 4 layers of clothing during winter when everyone else wore like 2.  It's really strange now though, as I'm not susceptible to feeling cold anymore over the years, often wearing less than most in winter months.

Doctors should really take BTM much more seriously.  I get the usual yada yada about more exercise, sufficient sleep and meals with no help at all.  Blood tests, urine tests and health check-ups all say that I'm completely healthy and normal - all apart from having BTM, which supposedly does not require any attention at all, and that I'm "just like a normal person", as told by nurses and physicians.

There isn't much information on the Internet about BTM, apart from blood transfusions for Major patients and articles about illnesses with similar symptoms.  Someone else earlier mentioned treatment by Chinese medicine: http://www.itmonline.org/arts/thalassemia.htm - I might give this a try.  To me, it sounds like the only proposed treatment on the web, though I would first clarify this with a Chinese medical doctor.  I've tried iron supplements recently which have alleviated a bit of tiredness though I stopped after having serious side-effects like nausea and black stool.  Not sure whether I should try it again as iron supplements are supposedly relatively toxic to Thalassemia patients with iron building up easily in the body.

I really hope doctors would give more research into BTM as it has substantial symptoms.  I'm still in search of some medication or diet that would alleviate tiredness/fatigue, and of course for BTM in general.

Any help would be greatly appreciated.

[ronib]

Hello everyone,
I am 40yo and was diagnosed with BMT when I was 22.  I too suffer with chronic fatigue.  I take power naps throughout the day to rejuvenate.  My diet consists mostly of fresh fruits and vegetables.  I can tell the difference when I eat too many processed foods.  I also have the cold hands and feet, but here lately I have also been experiencing numbness in my finger tips.  I take vitamin supplements but only take them every other day.  When I took them everyday, I felt crappy.  My doctor has told me to not only request iron and hemoglobin levels but to also request my "total iron binding capacity" (TIBC) and "ferritin iron binding capacity" (FIBC).  She says this will give a good indication of oxygen and iron binding capacity.  I find that when these are low, I'm more dizzy, light headed and fatigued.  I try to always rest when my body tells me to otherwise it shuts me down.  One thing I have found helpful when I am working under stress is to get in some excercise...nothing heavy unless you can handle it. This is in addition to an ample amount of recuperative sleep.  I am also concerned about the connection between BTM and thyroid conditions. I eat small portions.  Eating a "normal" sized plate of full makes me uncomfortable and sluggish, not to mention that I can gain weight from smelling food in the air!  I now wear glasses to help me focus better. I also have heart palpitations.  One thing I have a concern about and have not seen it posted are problems with your lungs.  I typically do not catch colds or the flu...but when I get sick, it is usually in the form of bronchitis or pneumonia.  Prior to it progressing to this state, I feel like I can not get a good, deep breath of air into my lungs. The fatigue that comes from this is astounding. Is anyone else experiencing this?

[Migsy]

Hello everyone,

I was diagnosed with thallasemia minor 1 year ago. I could'nt stand the fatigue and tiredness anymore and knew something was really wrong. I took me two childbirths to finally complain about all the same symptoms all of you are complaining about. So I really believe each childbirth really took it out of me...I love to run and find it very depressing that I can't run for more than 1/2 mile without getting fatigued. It took a lot of blood work to finally find out my diagnosis. It is very frustrating for me not to be able to function like everybody else especially when there is just no cure for this horrible tiredness and fatigue. I really hate the feeling of just not feeling energized ever. I go to bed tired and get up tired. I need to take a power nap every day otherwise I am to exhausted to act normally for the rest of the day. My husband is a 4 year medical student and the first thing he said when he looked up my lab work results was: "You are screwed!" And the truth is we are but we just can't let this blood disorder take over our lives. I try to be positive about it every day and make the best of every day. I am quite upset that I might have passed on this disorder to  my first born since 1 out of every 4 children born to us can get this disorder. He acts tired, out of breath and is only in the 10% on the growth chart. He will be 5 years old in September. I am so glad I am not alone and appreciate all your comments...P. S. I am from Spain and my Mom has the sam disorder.

[Mindy G]

I am 22 years old and have known I have had Thal for aslong as I can rememeber. I inherited it from my mother who inherited it from her father (Italian decent).  I completley understand what you are all going through

I am constantly tired no matter how much sleep i get and I never go out because of it. My face is always pale. I get dizzy spells whenever I stand up. My hands and feet are constantly cold no matter what I always have to wear heaps more layers of clothes even in the summer and when I go swimming I turn blue! Whenever I exercise my lungs feel as though they are going to rip out of my chest and I have the poorest memory sometimes I cant even remember what I had for breakfast! And the worst thing about this is I look so young everyone thinks i am either 15 or 16 which doesnt help to much when you are trying to find a job. I also always have bruises all over my body the slightest bump and I get a massive bruise. And last but not least I have had my eyes tested and apparently have near perfect vision but for some strange reason when Im driving at night I find it very difficult to see. The list goes on and I dont want to bore you all with my symptoms which according to the 'experts' there isnt any (****!)

on the bright side of things im not to sure if it is true but my nonno (grand father)  has told me that Thal actually makes you immune to maleria I guess thats a good thing in a way if its true!

I think more research needs to be done for all us Thal minor victims!

May God bless you all....

[H_Canada]

I Have been diagnosed with BTT for about 10years now my mum has it and so does 1 of my sisters and brother but they are fine. My mother has to always go into hospital cause her Hemoglobin goes down to 4.8 and they give her a blood transfusions then shes ok for a few months and it starts again. the docs say theres nothing we can do but keep transfusing her. My hemoglobin is 105 and iron is 8 which is low i am ALWAYS tired have headaches and feel dizzy because am a vegeterian its hard for me to chnage my diet i eat lots fruit and veg and celery and beetroot is good for you too. But still am tired. the doc has given me iron tabs to take but when i take them i get constipated when i went back to the doc he suggested iron injections but i heard the injections really hurt in the winter so i cant take them. I have tried keeping myself active trying to eat much healthier i eat eggs which are good and lots fish so hoping my next ion count will come better.

Good luck to you all and if anyone finds some cure to the tiredness please do let me know.

[btmhelp]

i too was diagnosed with Beta Thalassemia Minor (BTM). i was in 3rd grade when i was hospitalized and found out i had this problem. i was tired all the time too but seem to over come it. as i got older during my teen years i would pass out if i didn't eat right. i found that as long as i ate small meals several times a day i was better off. later on i married, we had a baby during that time i was really tired and i ended up having my baby a 6 months he was 1lb 14oz. i had toxemia or pre-eclampsia i was so bad that i lost my site before i had him. we both almost died. two years later i found out i was having another baby. i carried her longer i was 8 months along when i got toxemia or preeclampsia again witch the doc said was impossible for it to happen again. i also had gestational diabetes. that was not fun i felt like i was starving to death i had major high blood pressure too. some how God seen fit for both my children to survive. during all of this my normal weight was 98 lbs. unless i was with child which i would then be 150lbs. i lost all that weight in less than a year. latter in life around 31 years.  i started having problems with circulation in my legs. i started getting sick more often. i started getting even more tired than usual. i started having heart palpations. it is hard to keep a job when you are sick all the time. i am a single parent and don't know how in the world i will support my children if i can't work.  now I'm 33, i have had pneumonia for 4 weeks and still have not gotten better. i get sinus infections all the time especially during that time of the month. i have had my share of migraines during that time of the month too.  now they are telling me that my thalassemia may be getting worse. i didn't think it could. now my heart palpation are very offten. i have at least 5 a day. i don't know if i will see tomorrow. my doctor was suppose to let me know and every time i call it seems like no one knows the answer to that question. it is almost like he is avoiding me and my question " is it worse or not" what is going on.  i have two kids depending on me their father left me 9 years ago. no child support left me with all the bills. my credit is no good also thanks to him and i have no health insurance. i need answers and i need them now!!!!! any one know the answer to this please let me know.

need help now

[Meltini]

I too have suffered as tired ALL my life. If I do not take excellent care of myself, I get sick VERY easily. I must have 8 hours of sleep per night or I cannot function. My hands and feet are always cold. I seem to have depression quite often, as being tired all the time kind of points me in that downward trend. People do not understand my issues. I had a miscarriage 2 years ago and am looking forward to being pregnant again, but I am afraid that I will be SO tired that I cannot function. I also have heart palpitations. When I exercise, I tire easily and cannot seem to endure a lot. When I was a Firefighter/Paramedic I always had trouble with endurance- even when I was in tip-top shape! I crave red meat. I seem to have the best health when I sleep 8 hours + per night, eat small balanced meals with a lot of lean protien, exercise gently and regularly, keep my emotional self in check, and really just listen to my body and take care of it. When I am tired I must rest or I will become ill. For a while I had terrible recurring sinus infections. When I am under stress, I seem to get ill fast. My Mom has Thal minor and was just diagnosed with it about 5 years ago at age 60. She was adpoted and did not know her heritage. Now we know! Greek or Italian! That explains a lot. I am tired of doctor's saying that there are no syptoms (symptoms) for Thal minor. WE KNOW THAT IS NOT TRUE!

Best of health to all- God Bless!

Melissa

[sticky Yicky]

I relate to just about everyone's symptoms and experiences out there. I am 41 yrs old. was diagnosed at 22yrs. required blood transfusions when my son was born.
I suffer the tiredness, irregular pulse, bursts of energy only to be very tired later. low immunity used to be one of those terrible things for me too, therefore I was always the first to catch colds, flu's etc, no illness has a quick recovery. when my HB count is really low I don't have to visit the doctor. I know straight away. I can sleep anywhere any time, even while driving, I get very irritable and prone to depression etc etc etc.
What has worked: 1 good healthy diet but not heavy.
2.exercise ( from stretches to ABT's) don't overdo it. A regular gym program did not work for me.
3 snack diet-- fruit, almonds, dried fruit. plenty of water
4.  I gave up coffee altogether. it would make me extremely tired.
5 best of all- B-complex everyday (mega dose)
6. Molasses - the dark variety. picks up the HB count very quickly.
all the best,
Blessings ChrisD

[amoobaa]

Hey everyone, It is so good to read all about other people who are convinced (like me!!) that beta thal minors/traits have symptoms. I can't believe how many doctors say it's asymptomatic, it obvioualy isn't!! I'm 21 female by the way- my dad has BTM too.

I get the cold hands and feet, i also get aches in my joints and bones- like sudden sharp stabbing pains, does anynoe else get these?? They happen every now and then,  usually ever day..

I get REALLY dizzy when i stand up- i thought it was maybe posteral hypotension (my blood pressure is often low) but thinking about it now, it's probably just the thal minor...

I get tired after i eat and i guess thats cos all our blood goes to the digestive organs... i am aaaaaaalllllllwwwaaayyyysssss tired!!!!! ans i'm SO sick of it!!

I get emotional and depressed quite easily, yet theres always a part of me that just wants to get out there and do stuff anf run around and be care free and positive but everytime i try i end up making myself ill from exhaustion!!!

I was in a house fire a few years back (not anything major, the tv caught fire whilst we were alseep and there was a lot of smoke) but we were taken to hospital in an ambulance to check for carbon monoxide in the blood etc) and on the way they gave me a mask with pure oxygen and i have never felt so awake in my life!!! It's such a sill tiny thing, that nobody would probably remember... but for me it was amazing, everything just suddenly went crystal clear, everything was so different! It was like i was actually properly wide awake, not all groggy like usual.

Anyway, enough of that... i just thought i'd mention it as it upsets me to think that normal people feel like that 100% of the time and yet we are all coping the way we are- and being told by doctors that we are fine when we clearly aren't.

I hope everyone is ok and i was thinking of starting up some kind of BTM awareness thing, or maybe trying to get doctors to take it more seriously. Anyone have any ideas? Personally i'm going to take this entire list of everyones comments to my doctor and ask them to refer me to a specialist and i am going to make someone do something about it. Let me know what you guys think? and i'll let you know how i get on (it wont be the first time i've tried ...) or probably thre last time either, as it seems they just havet bothered to do the research... but who knows!! we'll never get anywhere if we don't try..

take care everyone :)

[atav]

Today I am exhausted and keep feeling like I can't catch my breath.  So I went on the web looking for information on beta-thalassemia minor.  I've looked it up before, and found pretty much all the same stuff about how the trait is "asymptomatic" or only causes a "slight anemia."  Finding this thread made me feel completely validated.

I'm female, 35, and I've always known I had the beta-thal trait but not really what it meant.  My father has it too (Italian) and I think an uncle and a cousin do too.  My mother always told me simply to eat enough iron but not too much (easier said than done), and that I shouldn't take iron supplements.  

Both my father and I suffer from fatigue, low blood pressure, dizzyness upon standing up too quickly.  Oh, and serious, major depression.  I am definitely always colder than anyone else in a room, and hands stay cold all winter.  Sleepy after eating? Yes. Emotional when tired? Yes.  Frequently sick? Yes, usually sinus infections.  Heart palpitations? Yes!

I too can fall asleep anywhere, anytime.  I often need a nap when I get home after work, then I'll still sleep a full night and have trouble getting up in the morning.  I don't understand how exercise fits in, but it does seem to give me more energy (though I'm a pretty slow runner)--maybe it provokes the body to produce more red blood cells?  When I'm exercising regularly, I find my immune system is stronger.  I have no kids at this point but wonder how pregnancy would affect me AND how in the world I would have the energy to go sleepless nights with an infant or chase a toddler around.

I too would love some answers.  Amoobaa, let us know if you make any progress getting to see a specialist.  Everyone, hang in there.  

[achan]

Hi!

I am in in my late thirtees and have just discovered that I have thellasemia trait. Beisdes some of the symptoms mentioned by some of you, I also notice that I have memory problems, such as I will have difficulties finding something, or I wouldn't recall incidents.

Wonder if any of you have experienced the same.

achan

[trappmar]

Hi fellow BTMs (beta thalassemia minors):

Great site - the most informative information on BTM online seems to be almost exlcusivley blogs like this one where people suffereing from thalassemia compare notes and agree that there are real, tangible symptoms.

I too have many of the symptoms mentioned, and have gone through my whole 25 years struggling between feeling "lazy" and "whiny" (and denying my symptoms) to feeling quite zealous about sharing with others my struggels.

One thing of interest:
It seems the medical community that denies BTM has symptoms is predominatly the "Western"/U.S. medical community.  Being of Bulgarian heritage (father born there), I have been very frustrated here at the lack of medical acknowledgement to this coniditon.

However, I recently spent a few years working in China, and interestingly enough my Chinese doctor over there was VERY concerned about my thalassemia minor coniditon and routinely checked in with me about it.  For example, she was very concerned about heart palpitations after drinking too much coffee (which I never even equated with BTM), getting excercise and rest, taking vitamins daily and managing stress effectively.   ALSO, she was concerned about potential travels to malaria infested areas as the apparently the conventional malaria medication is imcompatible/unadvisable with BTM.

Just food for thought....


-mkt

[ussiuma]

I also have beta thalassemia minor. I remember when I was a kid, I already had symptoms of anemia sometimes would suddenly black out for few seconds so I took some iron pills and that helped. Now, just turned 40, I feel lack of energy most of the time. Have to sleep like twelve hours a day at least. And I cannot stand any coldness or my body will shiver. So I would wear a big jacket outdoor on "cool" weather while others still wear shorts and t-shirts. I have two kids and I think my older also inherited this disorder. I was extremely anemic when I was pregnant that I had to take three iron pills a day and I was soooo craving for beef....almost raw beef...the one that when you bite on it still has blood dripping out.  Now I found out that my memory is getting worse, too. Don't know if it's related to BTM or aging.
Anyway, my husband now studying Chinese medicine and he's treating my symptoms with some Chinese medicine/herbal.
Glad to learn this website and knowing that I'm not the only one experiencing all these. Thanks for sharing.

[steveo in London]

Hmm,  well Im a 23 year old male with the condition inherited (and medically varified) from my greek mum. I agree that it does have symptoms and causes problems but it really isnt so serious. I have been half decent at rowing and running and am now able to hold onto cat 3 cyclists during 100 mi road races. I agree it is very frustrating as I train as hard as everyone but dont make the same improvements but I am still able to do ok and "hold on to the pack" in these highly aerobic sports. Often get head rushes and the like but I think this condition only puts you a shade below everyone else. I have no cold extremities and dont think I get much more tired than others. I do however think it becomes much more important to do fittnes training to combat our crappy red cells. Also believe that short of some future gene therapy or major bone marrow transplant there is nothing that can be done

I am also generally sceptical about most (not all) alternative medicine, which really when statistically evaluated shows zero benifits. I am a proffesional physicist tho so maybee my judgement is unfairley biased.

[feliciaf]

well today i just found out that i have Thalassemia Minor today. I'm a 17yr old female and found out that my father has passed it to both my brother and I.
I only really began to feel tired this year, and assumed it was due to my heavy workload (last year of school and doing a musical), however my tiredness continued on after the show. The past couple of months have probably gotten worse, all i want to do is sleep. And a visit to the doctor today (as i had a feeling i had tonsilitis) resulted in both news of tonsilitis and news that i was supposed to "URGENTLY" visit my doctor months ago in relation to a blood test which showed my weird iron count. When most people should be around the group of 20 to 100, mine was a "****" (in the words of the dr.) 6. And although my B12 levels were average (suggesting i was eating red meat etc) it was the lack of absorption that was throwing me out = thus Thalassemia.
I also get cold feet constantly and he suggested that my low immune system was because of my levels.
I used to constantly pass out, and have dizzy spells, and after all the CTs etc, didnt find anything...hmm, maybe if they tested my blood they may have noticed something wrong there.
I also have been extremely emotional this past month, honestly just breaking down into tears for no reason, and not knowing why...to be honest as the doctor was talking to me i felt like falling apart. i didnt have a clue what was going on and all i could think "please leave me alone, i dont want anymore problems, just give me the antibiotics for my tonsilitis and let me leave...i dont want to know about this thalassemia, pretend you never got the results!!"
however, when mum picked me up and i told her, she told me both my brother and dad had it (she was sure i knew...GOSH, i think i'd remember that!) and yeah, hence me looking up sites tonight. It kinda upsets me to know i cant donate blood, as that was something i really wanted to start when i turned 18, however its good to know why i'm feeling so tired, restless and drowsy and that its not just my imagination.

[brad_55]

Hi all,

I've known about my beta Thalassemia trait for as long as I can remember (I am now 22).  I had been warned that living on a mountain might not be for me and that I likely would not become an Olympic athlete.  However, all of my life I have been pleasantly surprised that I have never experienced any symptoms that I felt were abnormal or related to the Beta Thalassemia trait.  I dislike getting up early in the morning but I can easily run off of 6 or 7 hours of sleep of four or five nights in a row.  I must admit that even when well rested I do have somewhat darker that average circles under my eyes (I always attributed that to my French ancestry).  In terms of heart palpitations and dizziness I did not have any problems until I was 20.  I broke my leg when I was 19 (kicked with steel toed cleats) and the first time I did leg presses after recovery I think I forgot to breath and had a mini panic attack.  Ever since this experience I occasionally feel my heart race after weight lifting.  I still run long distances and play soccer with what I consider average discomfort and tiredness.  In fact I consider myself an above average runner.  Hope this gives hope to some of you out there reading these symptoms and reassures you that Beta thalassemia trait is not a disabling condition for everyone.      

[pete101]

very interested to hear your comment.  I must be a pretty mild B- thal - don't get dizzy, occasional palpitations, not cold, can get tired esp after meals.  But I was always hopeless at sport as no stamina - has anyone alse had similar experiences - I always wondered why my friends took so much longer to stop for a breather now I know.  I see on wikipedia that Pete Sampras has B-thal and there is a comment that it makes you tired - he vomited once at Wimbledon - that has happened to me when doing too much exercise.  I heard folic acid supplements may help - has anyone any experience of this - I read it on the web somewhere.  Iron is not recommended as you can get iron overload.

[pete101]

very interested to hear your comment.  I must be a pretty mild B- thal - don't get dizzy, occasional palpitations, not cold, can get tired esp after meals.  But I was always hopeless at sport as no stamina - has anyone alse had similar experiences - I always wondered why my friends took so much longer to stop for a breather now I know.  I see on wikipedia that Pete Sampras has B-thal and there is a comment that it makes you tired - he vomited once at Wimbledon - that has happened to me when doing too much exercise.  I heard folic acid supplements may help - has anyone any experience of this - I read it on the web somewhere.  Iron is not recommended as you can get iron overload.

[Faith886]

Hi,
I'm 39 year old African-American with an Italian grandmother.  My mother and I have Beta Thalassemia (BT). The literature is obviously incorrect, there ARE symptoms for BT. We both suffer from fatigue and dizziness upon standing up too quickly.   We both suffer from periods of serious depression.  I am ALWAYS colder than anyone else in a room; my hands, feet and nose stay cold all winter.   We both suffer from sinus-drip and a feeling like you have to blow your nose, but its nothing really there. We have to be careful not to catch a cold/flu because it can hit hard. We both have VERY SENSITIVE SKIN. We have to be careful what type of soaps, make-up, laundry detergent, etc that we use.  We are usually tired, yet we don't sleep well. When exercising, I get out of breath before my body gets tired and we get awful leg cramps.

I’m a scientist and its true, Thalassemia protects against malaria. That is why it is prominent among people of Mediterranean and Asian descent. It is similar to the protection of Sickle Cell among people of African descent. Iron supplements don’t help, they only make you constipated. I think its best to eat  natural foods and lean protein. Exercise as much as you are able and rest, even if you have to take a nap on you lunch break.

My prayers are with you all, stay strong.

[try2joy]

I am an Asian and I moved to California when I was 24.  I'm now 41.  It's good to know that I'm not alone.  I found out I have beta thalassemia when I was 28 when I was in college.  I was feeling numb on my face, my hands, and my legs.  I went to the college clinic and a smart nurse went ahead to order an overall blood test for me.  And from there, everything is history.  I have symptoms like fatique 24/7, cold feets, cold hands, cold nose, sinus, asthmatic symptoms, anxiety and back pain.  I have childhood PTSD.  My therapist told me that I had chronic depression.  After the treatment, I have less anxiety and less fuzziness and crankiness which I had before.  I don't know whom did I inherit from?  I only know that my mom was very cranky especially to me because she thought I's lazy instead of thinking of finding out from professionals.  

[JMB1]

Hello all,
I am a 37 year old African-American female with no known Italian, Greek or other European ancestry.  I found out I have Beta Thalassemia minor when I was pregnant with my second child 3 years ago.  I changed OB docs and this one had full blood work done.  She told me she had to have the lab check the results because this disorder is not normally found in people of my ethnicity.  

She gave me pretty much the same yada that most of you got from your doctors - that there are no symptoms and that my body has totally adjusted to the condition by now but when I searched online and came across this forum I literally cried.  I cried because I have been so tired all of my life but have always been accused of being very lazy and it just hurt that all the time there was really something wrong with me that nobody knew anything about.

I too have cold hands and feet but that usually only lasts from late Fall until Spring comes again. I also have chronic depression which is horrible when you're trying to be a good mother to two little ones.  My depression seems to  occur more often during the winter months which may be related to the lack of sunlight during those months - I'm not really sure.

My regular doctor recommended taking 1000 mcg of folic acid daily which does seem to help some with the fatigue but does nothing for the depression.

I saw a few questions regarding the effect on pregnancy and I am glad to say that I was blessed with two relatively problem free pregnancies with the slight exception that my iron levels got really low (shocker) and although I had wanted to deliver my firstborn naturally I ended up having to have a C-section because I never dialated at all even after 18+ hours of labor.  I chose to deliver my second child via C-section just because the fatigue during pregnancy after I delivered my first child was about 3x worse than normal and I wanted to get as much rest as I possibly could.

I guess the one benefit I have received from this condition is that many people do seem to think that I'm about 7 or 8 years younger than I really am.  Small consolation but it's not a bad bright side to have.

I wish all of you well.  Maybe someday there'll be an effective treatment for us.  Until then, please keep sharing your stories.  They have been very helpful to me just to let me know that I'm not the only one suffering out here.  God Bless you all.

[sonja354]

This is my 3rd time writing this comment--it's getting wiped out after i log in.  I haven't been diagnosed, but am 98% sure that I and my daughter have BT.  We both have similiar symptoms as most of you have (we go to bed w/ sock and our feet are still ice cold).  My concern now is my memory and I noticed that a few of you have added that in.  It's quite frustrating in that I can watch a great movie that I really enjoyed and forget its title and who played in it the next day.  Since hemoglobin trasports oxygen, I wonder if I lack oxygen in the brain--don't laugh who knows I might.  

Although my daughter got her rbc's checked every yr. by her ped. and he told me they were normal.  I believe that the cound can be normal, but their is what determines the prognosis.  Someone please let me know if I'm wrong.

I'm looking for some advise from anyone that has tried something that works.  What about the women that's getting treated w/ chinese herbs.  Please share your findings w/ us.

Thanks for listening.

[sonja354]

I just want to correct my posting since I didn't proofread it.  What I meant to say is

I believe that the count can be normal and it's their shape that determines the prognosis.

told you lack of oxygen.

[nads9]

I just turned 35 and can relate to everyone here, hands/feet feeling cold, tired all the time for as long as I can remember and periodic heart palpitations.  I'm wondering if there is any formal medical research being done on this because there are so many cases with similar symptoms. When I had my daughter, I hemorrhaged and almost needed a transfusion.  I'm wondering if it had anything to do with the Beta Thalassemia or Thalassemia Minor.  If anyone is aware of any type of research to further understand this disease or just for new findings, please let me know...***@****.

[nads9]

:: Introduction    


Leg ulcers very often have a haematological cause, sickle cell anemia and congenital spherocytosis being the most frequent. However, thalassemia minor as a cause of leg ulcers is very rare, the first case being reported by Estes et al.[4] Thalassemia intermedica (5% of cases) is often associated with leg ulcers,[2] but not the major form.


:: Case report    


A 28 year old female patient came with a complaint of a leg ulcer over the left medial malleolus. which had been present intermittently since 9 months. There was no history of trauma, pedal edema, varicose veins, calf pain, or a history suggestive of collagen vascular disease.

Physical examination revealed the patient to have pallor. There was a single shallow irregular shaped ulcer of 7.5 cm x 5 cm size over the left medial malleolus with a granulating floor The surrounding skin showed minimal erythema and hyperpigmentation. There were no varicose veins. The dorsalis pedis and posterior tibial arterial pulsations were well felt. There was no splenomegaly.

Laboratory data:

The haemoglobin was 10 gm/100 ml with a reticulocyte count of 0.5%. The peripheral smear showed hypochromic, microcytic anemia with poikilocytes and target cells. Sickling was absent and osmotic fragility was decreased. Haemoglobin A2 was 4.5%, haemoglobin F 1.9%, Hb A 97.6% and serum iron was 55 microgram/100 ml (normal-70 microgram-200 microgram/100 ml). Total iron binding capacity was 545 microgram/100 ml (normal-250 microgram-404 microgram/100 ml) and transferrin saturation was 10.1% (normal-25%-43%). All the other investigations were within normal limits. The patient's father and elder sister showed a thalassemia trait. The other family members were not available for screening.

Hospital course:

The patient was admitted to the hospital and treated with systemic antibiotics for 14 days. The ulcer was treated with zinc acetate spray and aluminium hydroxide cream. Within 3 weeks, the ulcer decreased to one third its original size and had completely healed at the time of discharge, 2 weeks later.
Source: http://www.jpgmonline.com/article.asp?issn=0022-3859;year=1989;volume=35;issue=2;spage=120;epage=1;aulast=Vagaskar

[adro]

Hi All,

I'm 28 year old Chinese male. I've read through the forum and found that a few of the symptoms apply to me. I found out that I had BT Minor about 6 years ago when I got suspicious after feeling tired all the time even after adequate rest. In general I am a bit pale, look about 4-5 years younger than my age (Can actually be a positive side later in life), can be a bit lazy and negative because I'm feeling tired a lot of the time and have a less than perfect memory. I also suffer from dizziness even after mild exercise. However for an unknown reason my hands and feet are a not cold as many other people in this forum seem to experience. In fact they are almost always warmer than other people without BT.

Anyway I just wanted to say that due to my background my mother used to take me to see the Chinese doctors for Chinese medicine. I would say that I have seen countless Chinese medicine doctors and have had my fair share of Chinese medicine. I have found that the best 'pick me up'  medicine for me is 'American Ginseng' (Not the cheaper Korean ones because they just make your heart beat quicker and is not as effective). It is taken by grinding the ginseng into powder, mixing with hot water and drinking it (taste is not too bad as well in case your wondering). An amount equivalent to a teabag is enough for me and it makes me feel energised throughout the day. This is safe and will not negatively affect any other part of your body. One downside that it can cost quite a lot in the long run (about $10 - $15 USD per day). I am still searching and will keep you updated if I come across anything worthwhile. Also just some advice. If you are considering buying ginseng teabags off the shelf don't waste your time and money. It has NO effect. They are very bad quality and possibly mixed with other stuff).

You will need to find an experienced doctor as a lot of Chinese medicine won't work because they are treating you with normal medicine which is not useful for people with BT. Most of the medicine is used to get your blood cells more active, which will work for someone without BT but honestly doesn't really make a difference for us. What you need is to increase the count of the cells (I'm still looking into that). I strongly believe that there is a cheap and effective alternative.

All the best for everyone here. I will let you know as soon as I come across something worthwhile!

[Shelley139]

I also have Thallasemia and I was probably the most lethargic child I had ever seen.  Turns out that although taking iron proves no more than to create iron toxins in the liver, there are nutritional things you can do to help your energy levels.  Interestingly enough, and I am not sure at all how this correlates, but I also suffer with Major Depression when not taking prozac.  My energy level when taking it definately improves and I actually suffered with that until I was 31.  I am now 47.  I just thought I was lazy.  The other thing that will really help is to take high quality nutritional supplements and for me, B-12 is a MUST!  Like many of you, my hands and feet are very often cold and I also find that around my period, my coloring becomes more sallow than normal.  Too much iron is definately something that could create liver cancer.  When I was diagnosed (in 5th grade), they thought that was the way to treat it was with iron supplementation, of course, that was not right.  I too get palpitations.  That is symptomatic of Thallasemia.  In terms of blood testing,  my doctor told me that through a microscope it just looks like anemia, but I agree with the other posting that the shape of the cells is what determines prognosis.   Wow, how nice it is to read these posts, I feel like I am with my own.  The depression in particular is what I hear from many of you.  Actually ALL OF IT.  That is so cool.  Someone mentioned not having any children yet.  Well I have 3 girls.  Two have been tested.  One has it and one doesn't.  I suspect my other one has it because she doesn't have a great deal of stamina either.  God I have the worst reputation for being mean and cranky if I don't get enough rest.  It's awful.  I wish I could be different but it is what it is.  And last but not least, I suffer terribly with my memory.  Wow birds of a feather are we???  Well thanks for having this blog.  It makes me feel better to know that I am not alone.

[adro]

Hi guys,

The site below provides information on treating Thalassemia Minor with Chinese herbs. Please take a look: http://www.itmonline.org/arts/thalassemia.htm

[essentialnina]

I was diagnosed with beta-thalassemia minor and i can relate to all of your stories.  Fortunately, I just found a doctor who's actually familiar with the trait and he gave me some sound advice.  He suggested that I take prenatal vitamins (i'm a woman) because the combination of folic acid, B12 and iron will help with red blood cell formation.  He also suggested that I get on seasonal birth control pills to limit my periods to four times a year so i won't lose so much blood.  Finally, he said that I need to decrease my stress because stress means the red blood cells don't form/function properly and they're needed to fight infection.  With stress, your body can't properly fight off diseases and you end up catching everything like pneumonia.  This was a world of relief to me because I believe my mom had beta thallassemia major.  She often had to get blood transfusions and died from pneumonia.  So there is hope.  Don't listen to people who say there are no symptoms and iron won't help.  Find a doctor who actually can give you some good advice.  Also, lower your stress level.  He recommended that if my job was stressing me, to find a new line of work.  That's exactly what i plan on doing.  

[sakshi1016]

hi guys....

m from india....even i've been diagnosed wid beta thalassemia minor...ma palms n feet swell frequently and i get rashes on ma skin....does nebody has ne idea dat is this related to thalassemia??

plz do reply if u hv ne clue....thanx!!

[SleepTech]

My Dad has Beta T minor, and I was tested for it as a young child. The test was positive, my sister was tested and was positive as well for Beta T minor. So its safe to say that I've known for awhile that I have this. I have been to countless doctors who have only offered me iron supplements (975 mg/day), which ,surprise, hurts my stomach. They only want to treat the anemia. As you all know there is much more to this than just anemia. Why don't they connect the dots? My psychiatrist wants me to see a hematologist, which I'm planning on doing. I have experienced many of the symptoms as all of you. Cold hands and feet, always feeling cold, always tired, dizziness, blurry vision, depression, heart palpitations, tachycardia ... I hope to find a doctor who can help.

[DanT1985]

I can completely relate to JMB1's post. I've just found out that I may have BT minor and I'm undergoing more tests. For two years it has been mistaken for iron deficiency anemia. I've had the same symptoms that everyone else has described: lack of concentration, tiredness, dizziness, cold hands and feet. I also feel short of breath all the time and have gotten sick. I remember going through hell as a child in compulsory sports competitions because I couldn't run without being too short of breath and have subsequently felt very self-conscious about participation in sport, and like everyone else, have often been thought of as lazy because I cannot concentrate and am too tired to focus on tasks.

Hopefully, if it turns out that BT minor is my problem, then my doctor can tell me something. He seemed really clued in to pick that up from past test results.

[BTMama]

There are several of us in my family with this trait. We all tire easily. I have two daughters, one with the trait and one without. The difference in their energy levels is astounding!
I am sick of doctors saying there are no symptoms. My BT daughter and I are frequently ill. If there is no need for treatment why do they give iron to people with non-Bt anemia with the same rbc levels?
Why did they prescribe iron for my BT daughter before they diagnosed her with BT if there is no need for treatment???

[Noosa834]

im 16 yrs old have minor and just finished reading, i'm very familiar with all these, but mine vary on the day somtimes my body wants to go to sleep but when i try to sleep i start to feel energetic. i get the occasional dizzie spell (1 bad 1 a month or so) the minor ones just make me feel disconected but the major ones progresovley(4-7 seconds) turn my vision into a complete black haze and everything feels like its spining and if i keep walking ill fall over

currently over the past few days i have been feeling overly tired but when i try to gett to sleep it doesn't work and i end up staying up  most of the night i also very sort of breath snd have all ways felt unfit when playing sports for my whole life when stressed i get unbelivable headaches it feels like a smal drill bit going through my head and somtimes i get spongey headaches that spread into the neck i alsohave a cyst in my femur(no bone marrow  10cm long) sleeping patturn all over the place i have also been going in and out of depresion  my heart physicaly feels different and nothing is happy somtimes anxiety late at night, anxietymakes me have irational fear it makes me convinced that some one is just out side my room

my short term memory is hopless rarly i forget having entire conversations somtimes my heart beats all over the place in my opinion these sound like prtty solid symtoms

[Noosa834]

does any one else have on and off sleep problems

[Bobace]

I am Canadian male born 1953 of southern Italian descent - both sides. My mother was a carrier of BTM gene. Of 5 children 4 have BTM.  My brother John was the only one without BTM. (He passed away in 1991 at age 43 from MS complications.)

I was diagnosed with my siblings in my teens after my older sister, an RN, was surveyed for BTM gene.  She was BTM positive and we had blood tests that proved BTM, except for John.

I played sports in HS but found that I had low stamina for any cardio-vascular activity that other kids could do without any problem.  The interesting thing was that I was lean and in good shape but I could not jog for more than 3 miles (lightly) when I was in good condition otherwise. (I would be halted by heart palpitations and heavy breathing as if I was starving for oxygen.)  I could not learn to swim because I felt that I was grasping for oxygen after swimming  very short distance - 20 feet - and literally having a dizzy and sinking feeling - that was scary.

As I got older (I'm going on 55 now) I found that my concentration would be fragmented easily. My ability to walk up stairs is challenged -six flights of stairs and I have to stop as I start panting heavy with heart palpitations. (I am slightly above my normal weight - 5' 9" and 175 Lbs.

I also experience shortness of breath and tiredness that reduced my enthusiasm for exercise which, in turn, negatively impacts on my health. I also experience long colds and flus and fear infections as I have longer recuperation than normal folks. I also have numbness on the sides of my thighs and experienced occasional cold extremities and sensations when others do not.

We share a similar problem and history. We had various advice from physicians over many years that range from denial of symptoms to serious issue. The truth lies somewhere in the middle: our stamina, alertness, suseptability to common colds/flus and mental faculties are more challenged than those without BTM.

The key to quality of life is to manage our lifestyles to accommodate our special condition. Although we share BTM we experience variable degrees of similar symptoms. The differences can be a result of severity of genetic abnormality of our BTM RBCs and our ability to discipline ourselves to focus on diet, moderate exercise and adequate rest. We can also consider, especially younger members of our group, to consider career choices that do not exacerbate our symptoms - high stamina and high stress work tend to tax our concentration and increase our tiredness and induce anxiety and, in worst cases, depression.

As we age we tend to be more susceptible to disease. It is not uncommon for those of us in mid-age (over 45) to start attracting more than one health condition.  In my case, I have excess pleural in lining of my right lung.  I also have an elongated spleen - about 2 inches (5 cm) longer than normal. My BTM makes my other organs work harder. (I also had experienced random heart palpitations that would scare me. I went for tread-mill, 24 hr. recorder, and ultrasound testing that had little results as I would show on the low side of normal and most doctors - in my experience (Canada) at least - do not get concerned about systemic health problems that fall close to normal.

Our health care challenge is that doctors are trained in western traditions to treat acute and emergency issues very well but less inclined or proficient to service those of us that have lower quality of life experiences due to genetic disorders that are not  life threatening.  

I controlled my symptoms by taking 1MG of Vitamin C (calcium asorbate) per day for many years. I stopped taking 1 Mg of Vitamin C per day about one year ago (2007) when I had a kidney stone that was very painful to eliminate - I went to hospital emergency for pain relief and CAT scans that found a stone passing. I resumed my 1 Mg Vitamin C today to counter my BTM symptoms as I also have an infection in my right ear that is being treated with 500mg of Amoxicillin 3 x per day -15 day treatment.

I try to focus on control and management. When I am ill I reassure myself that the length of recovery is not because I have a serious illness. My recovery time is due mainly to my BTM disorder. By rationalizing health challenges as genetic we accept that our role is to manage our diet, exercise, rest, career plans and, especially, mental health to improve our quality of life with BTM.

Focus on managing what you can control - diet, etc., and accept what we can not, as yet, change - BTM. Remember, we are in this together. Best wishes.

Bob

[kwebb77]

My husband and two older daughters have Thal Beta Minor.
All three have sleep problems and are tired all the time.
My daughters have had psychological problems needing medication.

My question is related to medications.  My middle daughter (age 26) was diagnosed with bilateral breast cancer last year.  She had to have 6  rounds of chemo plus a double mastectomy.  I keep wondering if the smaller weaker blood cells have an impact on how much or type of medication is useful.  It seems to me that medication would take longer to process out of the body (via liver and kidneys).  That would mean less medication would be needed.  Any thoughts?

Kathy Webb

[mikeintustin]

I am a 37 year old male of Asian decent.  Have known about my Beta Thal Trait for 9 years.  My symptoms are: fatigue, inconsistent sleep patterns, lack of concentration.

The symptoms  I don't have: pale skin(tan easy), dark circles under eyes, and cold feet/hands.

Some of the other things that are seem odd to me that I don't know are related are: I seem to have more energy at night, sensitivity to fumes(results in headache), headaches after a afternoon nap.

What works for me is Redbull.  If I have one in the morning I swear I feel like what normal should be.  I am able to focus and my energy is good.  In college it used to be massive amounts of caffeine, but it gave my a lot of mood swings.  The difference might be the folic acid in Redbull.  

In high school I was able to do well in football and track but paid the price for sustained aerobic activity.  This a mixture of passing out or puking.

- Mike in Tustin

[louloubelle]

I am an Australian with a white Australian mother and African/Carribean father.  I haven't been officially diagnosed with Beta Thalassemia but it was suggested a few years ago by my doctor when I had to get bloods done for fainting spells (which I'm now sure were related to having Beta T) and it was noticed that my red blood cells were smaller than normal.  As many of you feel, it's so comforting and validating to see that I'm not alone.

I have experienced some of the symptoms listed here - cold extremities and feeling the cold more than others, constant fatigue, problems with concentration because I'm constantly tired, easily bruising and easily fainting, and becoming exhausted quite quickly when I exert myself.    I had begun to think that it was because of the Beta T but didn't really know for sure.  Now I know this is likely the case.  I used to be quite active when I was at school and didn't notice many of these symptoms much then (particularly the fatigue), they have got more pronounced as I've got older.  I do recall noticing that I was great at sprinting (anaerobic) but not very good at endurance races (aerobic).  I would love to find out what different people find works for them, particularly in overcoming the fatigue.

[saldeban]

I have beta thalassemia minor & have only just connected my symptoms with this. For as long as I can remember I have been extreemely tired. During my school years I struggled to get out of bed some mornings & Even used to skive off so I could stay in bed. (this shorly was not normal. Most kids skive off to be with friends or to meet up with a boyfriend not to stay in bloody bed!!) I used to put it down to burning the candle at both ends because I was often out with friends after school but since reading this forum I have realised that I did & still do have a problem. I too get the breathlessness & palpatations that many of you get & have also had bouts of depression throughout my whole life. After having my 1st child I needed a blood transfusion & I felt like I have never felt before. This feeling lasted for about 4 weeks. I was on cloud nine. I had so much energy. Even tho I was getting up at all hours with the new baby I felt the best I ever had. After about 4 weeks the feeling faded so I went back to the doctor who told me that having a baby creates certain hormones which is why I felt so good those 1st few weeks. To this day I beg to differ. I have since had another child & didn't have any of those energetic feelings & this time I didn't have a blood transfusion.

What do you think we need then? Do you think regular blood transfusions is the answer? We need to stick together & get understood. For years I just thought I was lazy.

[Empathic]

I'm 22 years old of East Asian descent with Beta Thalassemia Minor.  I've known about my condition for about ten years.  I share some of the various common symptoms that have been mentioned here, including faint shadow circles under eyes, mental concentration hindrance, cloudiness in the head, feeling tired throughout the day, more energy at night, irregular sleep patterns, looking slightly younger than one's age, sensitivity to caffeine, and being susceptible to bouts of mild depression and mood swings.  

For me, I've found that a lot of these symptoms can be controlled reasonably well primarily through means of upping one's blood circulation in order to "start the engine".

Frequent exercise is of paramount importance, whether or not I feel like it (often the lingering tired feeling puts me off wanting to exercise, resulting in a destructive loop).  I also use morning showers to help me start the day.

For food, spicy dishes are good, and I've found cayenne pepper and ginger most effective for boosting circulation.  Also, eating rare steak every now and then gives me a lift.

Things I avoid include stimulants like caffeine (I don't drink anything containing it at all, including coffee, tea, cola) as, despite the initial kick, it gives me an enormous emotional crash afterward.

Don't listen to anyone who says Beta Thalassemia Minor has no symptoms - this is very likely medical misformation that has gotten seriously out of hand, quite like a false rumor.  I've known many relatives of different generations who have BTM and they all have similar symptoms of physical, mental, emotional tiredness.  It seems that BTM being grossly overlooked in medicine.

And since we can't really depend on doctors as a result, it's important that we all gather our ongoing experiences with BTM.

[saldeban]

Since finding this forum I have become a bit obsessed with finding out more about BTM. I was wondering if anyone else doesn't drink enough? I have frequently been told by the doctor that I don't drink enough & sometimes get urine infections & headaches. I very rarely feel thirsty & forget to drink. I can go a whole day without anything to drink. Could this be another symptom related to BTM? It might not be connected with this at all. Am very interested to know if any of you experience the same.

[Pucca13]

I am a 22 yr. old female with Beta Thalassemia Minor and I have always been told that I just have anemia. Anyways I am so glad I found this forum b/c I was told there are no symptoms or treatments, so I thought I had other problems too. So I have the cold hand, feet and nose. I am always tired, I get short of breath easily, dizzy especially after standing up, very pale, headaches, I can never fall asleep at night. But when I have my period I get the worse cramps ever. Yesterday I was in a restaraunt eating, and all of a sudden I started passing out, I was on my period, and I felt fine at the time, it just came outa no where. I had episodes when I would start wanting to pass out when I am on my period, but its only happens when I am active. This time it happened while sitting down. So I called for a doctors appointment, and they told me to go to the ER. I didnt go. I also pass out when the take my blood. Does anyone else have these fainting problems? It is awful because I am now scared to go anywhere or drive during my menstral cycle for the fear of passing out. :( I am open to alternative medicine, so I am open to any ideas.

[melikespi]

I am a 23 year old male in the USA. My mother's family is from Sicily, and my fathers family is from mainland Italy, and Austria. My mom carries two genes for BT (so she has BT Major),  I only have one gene (therefore, I have BT Minor)

Here are symptoms I have experienced my entire life:

1. Dark circles under my eyes (regular sleep cycles help reduce them, but they are always prevalent)

2. Excessively cold hands, feet, nose (almost to the point of numbness)

3. Chronic illness (I get around 4 colds/flus per year at a minimum..I have contracted mono TWICE, which is extremely rare, without being in intimate contact with people who have or had mono previously)

4. Chronic fatigue (I feel exhausted all the time, even when I'm not sleepy, I feel physically drained)

5. Mood swings/Depression/Anxiety (my mood will fluctuate greatly day by day. Some days I will feel fine, and the next I will feel very worthless,or very nervous.

6. Chronic headaches (I get moderate headaches on average once every other day...some days it is a constant headache that will last for hours (5 or more))

7. Occasional heart palpitations (When stressed, or after physical exertion it feels like my heart will skip beats)

8. My mind is often cloudy and at times can get "fried" or overloaded very easily...even in something as simple as shopping for shoes, or a movie, or video game. Considering all options and seeing so many things gets my brain tired and cloudy. This applies to homework, or projects when I was in college. Or even thinking about what I want to do with my life/career. I'm very easily mentally overwhelmed, despite having good academic success (gotta work harder to keep up)

There are a few things I've noticed that help me:

Eating Fish/ Taking Cod Liver Oil Pills (I've read many articles which show the vitamins and fatty acids in fish and cod liver oil pills can help with mental function/depression)

Naps (short naps help me feel energized, get my mind in focus)

Weight lifting (I could never do aerobic exercise for too long....I was a fat child, but now I am muscular in build from weight training...this helps provide me with energy throughout the day)

I have noticed that energy drinks with many vitamins or folic acid help more than coffee or a coke (redbull helps a lot, actually).

I will be trying:

-Iron supplements (in the serving of a Centrum pill..nothing too much)
-Folic Acid (I've heard this helps a lot)

to see if I notice any improvements.

[drsaps]

Hello All!
I am a 27 yr male and a doctor, I also happen to have beta-thal minor/trait which I have got from my mom. Although medical science does not acknowledge any major symptoms in this condition, I dont completely agree with it. I have exercise intolerance to some extent, have stomach upsets all the time and suffer from perpetual sinusitis. I have not been able to shed that extra bit of fat due to inability to reach near my maximum heart rate. This forum is actually an eye-opener for the medical community as it provides statistical evidence that all is not well with people with thalassemia trait.

cheers!

[foradune]

i have beta thal minor. a) im always tired b) occasionally get dark circles around my eyes c) get anxiety and depression for no reason, this causes people to think i have a mood disorder when im feeling happy and positive d) get confused sometimes, dizzy. Of course there are %#$@ing symptoms! Medicine has failed our kind. Dont bother seeing a doctor, youll get a generic response. Most mainstream sources will state that there are no symptoms and it can go undetected, what a load of @#^&, i know how i feel. You are better off joining the online community where you can find a wealth of information at your fingertips. I feel better when i eat healthy foods that allow better iron absorption, fresh fruits and veggies, play sports, exposure to warm and sunny weather. Thats the best advice i can give.

[rivkatoy]

I am a 58 year old female and have been diagnosed with thal-minor since age 20. I was the first member of my entire family who was diagnosed and following my diagnosis, it was found to be from my father's family who are mostly German but also some mediteranean in there as well. I had been a very skinny and sickly child but after being diagnosed, I took it on as a challenge. I started reading anything and everything having to do with health and nutrition and changed my diet to mostly organic and all unprocessed natural foods. I have always done best on a higher protein diet although I crave some carbs probably for the energy and do eat 'good' carbs and rarely the 'white flour and sugar' variety. My diet consists of lots of lean protein such as fish, chicken, buffalo, eggs, very low dairy (as I'm intolerant), lots of vegetables, fruits (mainly berries) and only sprouted grain bread occasionally as I don't do well on grains. I do have a supplement regimen and an exercise routine and have since my 20's. I believe this routine has 'saved me' although I am still always 'swimming against the current' and it is difficult to try to be normal when you're not! I can relate to the many posts here as to the fatigue, heart palpatations, etc. I will say one thing which I feel is important and that is this: Although almost every doctor of the many I've seen over these years has told me that iron supplements will not help me, that is just NOT true! I have recently been seen by a hemotologist oncologist which my women's provider sent me to for iron absorption tests because of severe iron deficiency anemia. I have always had a hemoglobin count of between 9-10 and have only ever felt great (didn't know people could feel that good) following blood transfusions given to me during pregnancies and following child birth. This doctor told my husband and I that he treats many with thal-minor and is able to treat the iron deficiency successfully although of course cannot change the way the body makes blood cells. He told us that thal-minor patients many times have problems absorbing iron and even though they may take iron pills, it does not help. Once my results were back showing I had no problem absorbing, this doctor told me to take only a liquid form of iron on an empty stomach every day as that is the best absorbed way to take iron. My woman's provider told me to get Floradix iron and herbs. I bought the yeast-free version since I have had candida yeast problems in the past, and began taking it (1/2 dose am and 1/2 dose pm) on an empty stomach. Within four weeks my hemoglobin went from 9.0 to 10.5 and I cannot believe how much better I feel....almost like a 'normal' person. I also have another liquid iron supplement made by Natrol which I had used in the past but it is not as easy on my system as the Floradix. I buy my supplements online from vitacost.com as the cost is far less than other places I have shopped. I would encourage anyone with this blood type to not give up on yourself and feel resigned to be a tired and sickly person! There is hope and with proper diet, supplements and an exercise regimen which you can tolerate, you can be the best you can be! I actually look younger and better than most my age and am in really good shape for almost 60 which I can credit to the effort of diligently working at being healthy for all these years. To those of you who don't feel you can run...try walking regularly (even if it's around the block at first). To those of you who cannot tolerate a strenuous exercise program, find one you can tolerate and stick with it. Mix up different types of exercises, like walk one day, do yoga the next and maybe light weight lifting the next. I try to do something every day and honestly do not feel good unless I do. As far as getting colds and flus constantly, I don't! This too I credit to the healthy lifestyle. Good health doesn't happen when eating a processed diet and living a sedentary lifestyle. Before my diagnosis, I ate the great American processed diet and did nothing good for myself...just the opposite...and I felt tired and sick all the time. I can honestly say that the healthier the lifestyle, the better I have felt and that I get 'punished' when I 'fall off the wagon' of my good routine. To those of you who have a low hemoglobin count and battle iron deficiency anemia, I would recommend trying the liquid irons mentioned above on an empty stomach. I honestly think you will have a good result from them if taken properly and consistently and will feel much better and have a stronger immune response as well. Good luck to you all!

[Nina75]

Research is now supporting a link between BTM and mood disorders. If you're interested, follow this link:

http://www.cpementalhealth.com/content/1/1/6

[bramptondragon]

Thank you for your pearls of wisdom. Will put some of your advice into action.

I'm 34 and female and have known about my BT since I was 26. Makes sense now looking back and explains why I even fell asleep standing up whilst waiting for my dad to choose a book in a Libaray!! My nose sure hurt after that fall!

It's meant to be gentic trait for those originating from Meditaranian countries, Mid Asia and Africa. So being Strawberry blonde, very fair with freckles and blue eyes, I was quite surprised to also have this trait.

I can really understand peoples' frustration out there and I am glad there is at least this forum to get some advice. I suppose I just want to offer a huge hug to you all and try and put some of the advice into action. Even if the change is minimal, it's still a change and your quality of life can improve a little.

God bless you all, and I will keep you posted to see what changes to my diet give me more energy.

[sweetpeade82]

Hello all,
        I am a 26 year old female and I was diagnosed with BTM at the age of 17. I also experience similiar symptoms that everyone else has talked about. I have five children, and all my pregnancies have went relatively well, except for the continued tiredness and anxiety/depression issues. My youngest child is now 4 months and my issue is with breastfeeding. I breastfed my 4th child for 8 months, and he had many growth issues. My daughter is now also experiencing the same issues (she is actually losing weight) I have started supplementing, I don't want to go through what I did with my son. I have read that this can tend to happen with thalassemias/anemias. Has anyone else had this issue? Thank you!

[BENJI81]

Firstly, thankyou everyone for posting your experiences because by doing this you are helping so many frustrated people, even people who choose not to participate in the discussion. I am a 27 year old Australian male who was recently diagnosed with Thal minor, yet I was pretty sure I had it for years. My dad is from Cyprus so this is where I got it from. I have always been pale, had dark circles under my eyes and have constantly felt tired. I never actually got tested for it because I was always told that there are no symptoms or treatment for the condition, so I thought whats the point? I have however been told by doctors that I am Anemic, that I have irritable bal syndrome, that I am not sleeping enough etc. Now the Doctor tells me that the symptoms that I am feeling are not related to thallasemia. If this is the case then how could I have known I had it before I was even diagnosed? The symptoms are there and they are real, I am sure that there are different cases and perhaps some people are not effected as I have been. I am however angry and frustrated that our condition is not recognized by the medical community, Its kind of ironic that we are all too tired to give the condition the public recognition that it deserves lol. I hate being TIRED!!! good luck around the world.

[Deanna527]

Wow!! Reading this forum sure does explain alot. I was shocked as I read each entry and related to so many of them. I have known that I have Thalassemia Trait since childhood, however I never had a doctor who knew anything about it. All my past doctors told me there are no symptoms, but this past week I went to a doctor who confirmed that the trait can cause tiredness.

So, I went online (again) to try and find more information, and found this site. I, too, am extremely tired. No matter how much sleep I get, I wake up tired and feel the need to nap by 2:00 in the afternoon. It is extremely rare that I actually do nap.......which makes me irritable. I go to bed exhausted and find it hard to go to sleep. My feet, hands and nose are always cold and I am so very forgetfull. I also get out of breath with exercise. All these symptoms....and I never related them all linked to one problem.

I am afraid to even talk to a doctor about being tired, because they want to label me with depression......I am not depressed...I AM TIRED. I was also diagnosed with adult Attention Deficiet Disorder.  Now I wonder if it is the Thalassemia trait at work??

I sure hope that some studies are being done. I have three daughters, two who have this same thing and I am watching as they suffer with the same problems. Now I am sure it is due to having this trait. I have recently had a hysterectomy primarily because my cycles were so overwhelmigly exhausting. I still get very tired, but not so bad as when having a period.

What a relief to know that there are others and maybe some research will be started. I am bringing all this to the attention of my doctor and hopefully he can/will find more information.

[Suzie154]

I learned that I had BTM when I was 25 & I'm 49 now. I was informed that I would bruise easier, bleed more than normal people, would have chronic fatigue, get sicker easier and for longer. That I should take a good multivitamin with iron just to make sure that I wasn't deficient in that area and they warned me to let doctors know I have this blood disorder in case they try to prescribe iron for anemia. Best info I ever received. The one paragraph literature I've seen online lists this disorder as having no symptoms, which wasn't what I was told nearly 25 years ago, and has not been my experience, though I know some people don't have symptoms. Perhaps it depends upon how anemic you are?

I experienced nose bleeds one to three times per week as a child, caught every cold possible, pretty much chronically ill, dark circles under my eyes and could sleep 10 hours every night & still be tired! I would become dizzy frequently when getting up & would become fatigued much quicker than normal kids. I tend to get pretty pale looking.

I still experience fatigue constantly, my MCV is 59-60, regularly, so I'm fairly anemic due to this condition.  The only things that make me feel better is garlic and red meat such as a very good steak (I've seen some other posts saying  the same thing) and it seems to assist for that day anyway.  Hope this helps.

[kim198511]

Hello everyone, I'm 23 year old woman who has Thalassemia Minor... I am also very tired all the time.  I was diagnosed when I was born, because my father has thalassemia, along with my brother, my grandfather, and the list goes on. My grandfathers cousin also died from Thalassemia Major because both of his parents had Minor.  Here is some advice, make sure you have your husband/wife checked for Thal before you decide to have kids, do not want to put your kids at risk for having Major.   Definetly from my mediterranean Italian side of the family.  I suffer from extreme tiredness, I can also get 12 hours of sleep and still feel like I need another 12 hours.  I get heart palpitations time to time.  I used to be pretty athletic, but could never run for long periods of time because of this disorder.  I remember my coaches always yelling at me to push harder, but they just had no understanding of thalassemia, thinking I was just being a lazy person.  I learned to deal with this since I been aware all my life, one thing that really bothers me though is the fact I cannot exercise normally, running for 5 minutes tires me out and makes my heart race.  I know there is nothing I can do about that though.  Relaxing walks will be the most I can do!  I also been told by my hemotologist that iron supplements will not help in this situation unless my iron count was low, which its only my hemoglobin which is usually around 10.3 on a normal day.   So everyone who has thal minor feel better, because you are not alone and pretty much the worst thing you have to deal with is being fatigue 24-7 and palpitations!

[socal1969]

I am a 49 year old female with Thal beta minor.  I also have gluten intolerance.  I have been off of gluten for 2 years and my energy level and digestive woes have improved.  I am in peri-menapause with very heavy periods.  Inexplicably 7 months ago I developed an extreme case of eczema.  My doctors have been unable to determine the cause.  
Has anyone else suffered from any skin conditions and do you have any suggestions of treatments or diet that helped?

[cathyraiders]

THANK GOD I FOUND THIS SITE-

I am a 25 year old woman. I knew since i was 10 i had thalassemia minor. I also have 2 children out of four that have it. When i was younger i felt o.k. but as i got older (around 18)my symtoms got worse. I am tired all the time, i have erractic sleep patterns, i experience symtoms of depression although i dont feel sad. When i gave birth to my first son at age 20 he was released the next day but i was held due to my iron levels. My feet are cold, im always exhausted,i get sick alot, i get severe headaches, my stomach hurts often, i bruise easeily and i am often forgetfull. Dont get me wrong i am funtional i am studying for a law degree with high marks and excersise regularly, but at the end of the day i feel as if i might die of exhaustion.

Recently, for the last three months when it comes time for my period i am so exhausted i cant get out of bed. I feel dizzy and nautious. The worst part is that instead of bleeding normally like i used to for the last three months i have just spotted. No red blood, just blood clots.  No im not pregnant my husband had a vasectomy years ago.
It seems to be getting worse.

I have made an appointment to see the doctor next week but im afraid he will say what i have been hearing my whole life that thalassemia minor has no symtoms. I have been accussed of being a lazy drama queen. SO TO ALL THAT HAVE BEEN TOLD THERE ARE NO SYMPTOMS-YOU ARE NOT ALONE and im glad to hear that im not either.

I SAY WE BAND TOGETHER AND DEMAND RESEACH INTO THIS-SO FUTURE GENERATIONS CAN UNDERSTAND THAT ITS NOT TRUE -THEY SAY EITHER YOU HAVE MINOR WITH NO SYMTOMS OR YOU HAVE MAJOR AND ARE GOING TO DIE. THEY NEED TO KNOW WE EXIST AND THAT THIS IS NOT TRUE.

[Scouse0069]

Hi

I am 40 year old male and the tiredness I have adapted to but one thing that has ruined my life and I wish this on nobody is the Erectile Dysfunction due to the Iron overload in the blood.

Checkout the case studies proving a link between THALASSEAMIC MEN & ERECTILE DYSFUNTION, link below

http://humrep.oxfordjournals.org/cgi/reprint/15/11/2375

I had four years of councilling and the end conclusion was it was all in my mind, recently discovered that this was not true. My councellor has not admitted she was wrong and is helping me with further investigations. It is costing me my sanity, happyness and possibly my marriage.

I want to bring this to the Primary Care Trusts attention and stop it happening to anybody else. Why are we not entitled to free drugs like Diabetics etc. It is a physical condition and deserves not to be descriminated against.

I love to email others that would like to talk about the subject.

[tcat27]

I agree with all of you.  This is what helps me:  I get up in the morning ( 6am) and ride the exercise bike for 40 min , take a shower eat a healthy breakfast ( oatmeal or egg whites ) and get coffee before I start work. This gets me through the whole day feeling good.  At night by the time it's around 6pm I start to feel tired and try to get at least 8 hrs sleep before I start the same thing the next day. I also drink plenty of water.  When I take days off without exercising I get tired faster. Check with your doctor if you never exercise and now start.  Hope this helps because it helped me.

[violarh]

I'm 24 also living with Beta Thalassemia Minor. In the last 2 years my doctor has been giving me B-12 shots which have helped tremendiously with the tiredness, but I do still have days that no matter what I'm exhausted. Also, am taking Folic Acid. A thing both my mother and my grandfather (who also have it) have experienced is mini strokes and MS like symptoms. With the research I've been doing recently I found it is rare in Beta Thalassemia Minor to have mini strokes (more common in intermedia and major) but it does happen. It has been very dibilitating for my mother and I'm hoping to go see a Thalassemia specialist to hopefully prevent this from happening to me.

[aisha1]

hi
first of all i m glad to know that i m not the only one 2 months ago i came to know that i have beta thalassimia that is minor my doctor was very relaxed she said is very common no need to worry it has no symstom but after searching and reading all this i came to know that i m not the only one we all have same kind of symptoms my mom used to call me lazy girl  but know i get more tired easyly some times my legs bones aching just for 1 min then its normal again i told doc but they always said its growing but i m 24 now still i felt sometimes  i also i have some problems in my periods and in sun light i always wear sun glasses coz i fell so much stress on my eyes .
1 more thing i have dark eye circles even if i sleep 10 hour  i wont see any change and my joints r dark i have tried many remidies but no change if all of us have same kind of symtoms then y  doctors r saying there r no symtoms

[Sue357]

Wow.  I can't believe I found this forum....what a blessing.  I am a 52 year old woman who was diagnosed with Beta Thal Minor at the age of 15.  Back then, it was really hard to detect.  When I was 7, I spent 3 weeks in the hospital for Mono ( very uncommon for a child and I think it was due to BTM).  Back to age 15, I was put on heavy doses of Iron pills until age 24, when my new doc took me off and checked my liver as they could have caused problems.  Thank God they didn't. My sister and nephew also have it. I was always told that it was "untreatable" and told to avoid iron. However, I am always tired. Always.... especially lately.  I just had blood work done and my RBC is a little high and some other things ( can't remember the tests were low- I looked them up and they had to do with the size of RBCs and oxygen capacity.  I am following up with my PCP as he is concerned with the high RBC.  I also had surgery, last year ( colon) and have an umbilical hernia.  Now, I can barely get through my work day ( I am a GED instructor) with out collapsing on the couch when I get home.  I am sorry we are all having symptoms but am glad that I know I am not crazy. My hemoglobin count is usually around 10.  I have to remember to tell people I have BTM when I get blood drawn or they freak when they see the numbers.  Especially as it has dropped to 8 or 9.  After my surgery , it dropped to 7 and they had to give me 2 pints of blood.  I notice people are saying that they feel better on oxygen or after getting blood.  I don't remember as I was still pretty sedated.  I am going to talk with my doc when I see him this week.  Thanks again and good to know I am not alone. Also, I have suffered from clinical depression and anxiety since the age of 9.

[tnenwani]

I am 17 and I am so glad to have found this site. I thought i was 1 in 7000 people to have diagnosed with Beta Thalassemia Minor.
I have suffered through tiredness all my life. I also have cold hands and feet. Recently i was out in the sun for long and i fainted. After having sufficient water in the sun i vommited.

I feel so weak. I used to take iron tablets: follic acid, fefol-z, feroglobin, etc but i found out from my doc. that i should not consume these as they can cause toxic effects. Its crazy when docs. tell that there is nothing you can do about it and that you are a normal person.

How can someone be normal when they feel sick and tired all the time?And when their hemoglobin can never increase?
I have gone to many blood donation camps when I did not know of the trait i had only to figure out everytime that i cannot donate beacuse of very low HBL ( sometimes 9.1, 9.8, 10 ). I feel so sad deep within.

The only issue that matters, bothers me all the time that how will i be able to survive pregnancy or give a normal birth to a child? And that before choosing a life partner for myself I have to first get him a blood test done and find out if he has the same problem too.
My doc. said that the only precaution for me is to find a better half who is not diagnosed with the same trait.

He also warned that if my future husband is a Beta Thalassemia Minor as well then there is 25% risk and chances of the child born having a MAJOR and will have to get blood transfusion every month.
The thought of it scares me! I feel so strange about myself.

I just wanted to know how can I continually keep my Hemoglobin count upto 10 or 10.5?
Please help.
Take care to all who have the same blood disorder.
Stay WELL.

Rgrds,
Tina.

[Atlanta Girl]

I have Beta Thalassemia minor too and honestly, I don't feel any different than a normal person.  It's true that sometimes I feel tired, stressed out, maybe a little down... but who doesn't from time to time?  Usually it happens at the change of the seasons, especially from winter to spring.  I do remember that around your age tnenwani, exactly around my birthday (end of April), I went to the doctor feeling exceptionally tired.  I had troubles getting out of bed in the morning and the doctor run some testing.  My iron was low (as usual) and she gave me some pills.  I took them for a little while then got sick of them.  I felt better after a month or so.  It never happened again. I had a very normal and good pregnancy in 2007-2008 and my son is healthy.  He had is iron levels checked a month ago and they were normal.  His dad doesn't have the gene, and I don't think he has either, considering his iron levels.  His ped will have him tested at some point in the future. During my pregnancy, I took the pre-natal vits (when I remembered) and no extra iron until the last trimester.  I always try to eat lots of food that are high in iron, since the iron that you get with pills ends up mostly in the toilet! In the third trimester of my pregnancy, they checked my iron levels and they turned out to be low.  That is not uncommon, I know plenty of people to whom that has happened and they don't have B Thalassemia.  I took some extra iron (not that much) and ate foods that contain a lot of it.  It went up and everything went fine.  As far as selecting a partner that doesn't have the gene, don't worry so much about it.  This condition is not THAT common, unless you live in the Mediterranean area.  My sister is about to get married and both have the gene.        They both live in Italy.  

[rock007]

i am 19 and i am suffering too and i was diagnosed 2 months back.. when i was  having fatigue symptoms for more than 3 days,then i went to the doctor and he performed test and found out that i was suffering from minor.. the thing i wann share is that .. i need a very strict routine of my life that is i cant play with my hours of sleep i.e. i need to have min of 8 hours of sleep and also i can do tiring works for long time..
2# my body temp. is always around 97 or below... which i really hate..
3# i cant stress myself much or give some hard time to my body as like others... of my teenage frnds..
4# no matter wat i do.. i have to take a day or two day off becoz of fatigue.. this thing really affects my schedule becoz.. its uncertain when will it happen but its for sure it will happen...
i am really not able to enjoy my life becoz of being a carrier of this disease...bt still i believe whn goin gets tough the tough gets going.. so we should accept this and take it as  a part of our life... and cont. our life.. happily..be happy live happy...life is short..

[mel1995]

hello i am melissa lowther i am 14 years old and i have got beta thalassemia too and my symptoms are i can sleep all night and wen i wake up i am still sleepy and my legs always hurting and some time my eyes hurt that mush that i cant open then  and have have were bad mode swings do you have thins symptoms too?

[deve]

hi i'm 23 years old, female from the Philippines... I am a registered nurse I was diagnosed with Beta thalassemia Minor when I was 16 years old... Before that I am a really sickly child.. I had Kidney problems. I had my kidneys inflamed when I was in school age... It was a result from a recurring sore throat> Now I know why I keep having that infection before...we minor thalassemics have lowered immunity and we are prone to infections... Because of this my doctor kept me in constant monitoring...and since CBC is a basic procedure that's when my abnormal hgb came into notice... My medical records have shown that my hgb levels since I was like 10 years old never changed... and it's pretty abnormally low even for a child...I was reffered to a hematologist and I had undergone a series of test...including erythrophoresis I think...(i'm not so sure though) and that's the time I was officially diagnosed with Beta thalassemia minor...yeah...Just like you guys my doc also told me that I'm not supposed to be worried because it's just a minor and I will not manifest any serious symptoms but then I have always been easily fatigued and tired... and I easily be out of breathe even with just simple hiking... and my boyfriend thinks i am intensely emotional... and do have sudden mood swings...  i do get easily depressed over things... I also have visual issues....and sometimes I even think i'm photophobic because I will have headaches if I exposed my eyes to bright lights... and about 3 yrs ago I had a renal stone... I think it was also related with thalassemia though... pls tell me if anybody else had the same occurrences as mine... and everytime I had my period... I always have the terrible cramps.... and sometimes I would even wonder if there could be any possible risk of having thalassemia major from thalassemia minor....

[kundalouie]

I am a 50 year old male. It is a sad fact that the U.S. medical system refuses to study this genetic disorder further. I found this forum because I was looking for information on the trait and high altitude (over 10000 feet) because I want to visit Tibet and Peru. I have traveled extensively on 14 hour flights with cabin pressure at 10000 feet, and I have jogged in Colorado Springs and MX City (about 7000 ft) with no problems.  There is a study I found by the Indian AF regarding fighter pilots with the trait, no problems, btw.  I want to stay at higher altitudes - for a week - different from 14 hour flights.

I became aware of my beta thal trait when I turned 18. I inherited the gene from my mother, who is Greek. I was told that there are no symptoms, however my spouse should have genetic testing done if we decide to have children. My mother (now 72) always has, and continues to suffer from so many of the symptoms described in this forum.  She was originally told to take iron supplements, etc.  As a child I felt lethargic, and did not want to participate in sports, activities, etc, other than riding a bicycle.  At the age of 24, I became a Special Agent, and had annual screenings as part of the job. I therefore kept a personal record of my hbc, mch, etc. I did notice that when my HBC (hemoglobin) count was lower than 11, I would feel very lethargic. (my HBC varies from 10.4 to 12.6)

At the age of 34 I noticed that I had begun to put on a little weight (I am 5'10" and I weighed almost 180 pounds!) and did not want to look like a typical 40 year old overweight "American" male.  So I began to run at least four times a week, with alternate days of anaerobic training (not too much, suits are expensive!).  I also changed my diet, no more fried foods, lots of fresh fruit and vegetables, more fish and less meat for protein. I lost 20 pounds, and 2" from my waist.  ( I am still there!). The exercise increased my stamina, however there are days when I listen to my body and take a break and relax.  Stress is also a major factor, the job was stressful (more from my co-workers, however, more interested in getting promoted than catching bad guys!) and now that I am retired, I am practicing Kundalini Yoga in addition to my running, and it has incredible effects!   (one does not have to be a Buddhist or Hindu to enjoy the marvels of yoga and self realization). Also, you don't have to go to a club for this (it has become so trendy and this makes it lose its meaning), you can get a video, and practice this at home (try Maya Fiennes product).

Anyway, the most information I have obtained on the subject is because one of three sons has Thalassemia B major (he was diagnosed before he was born - his mother is Italian with the trait - of course). With appropriate attention in Italy and in the U.S. (Johns Hopkins) he is doing well and he has given me inspiration (he receives transfusions twice a month, and daily does of chelation therapy to reduce his iron overload.  There is so much happening now with genetics, and there is hope that once clinical trials are complete, a safer cure, other than a BMT, will be available for most of those afflicted with blood disorders.  

Anyway, from what I have read, there are many folks who suffer from depression, which is finally getting the attention it should, it is not related to thalassemia trait, it is a separate genetic trait, and also caused by the stress of today's society.  A lower level of HB will cause you to feel lethargic. Stress, depression and inactivity will make you more prone to getting sick, think of each thing separately.  However, if you decide to live a healthy and active lifestyle, it will benefit you in so many ways.  The good news is that you cannot be afflicted by the deadliest form of Malaria (the jury is still out on this!).  

Oh, one last thing, do NOT take iron supplements. I alternate between taking Spirulina tablets or Ginseng, an 81 mg aspirin, glucosophamine and omega 3 fish oil.  

Satnam!

[River34]

I'm 34 and I was diagnosed with Beta-thalassemia minor about six years ago.  All my life I've struggled with anemia, tiredness, depression, ADHD, dizziness and fainting (I often pass out during or after getting my blood drawn). When I was a child, doctors would say there was something odd about my blood, the red blood cells where extremely small not allowing an adequate amount of oxygen to travel through my blood which could cause depression, the inability to concentrate
and other ADHD symptoms. When I was 18 I joined the Army and I quickly became known for passing out after a long run and after time spent out in hot temperatures (known as a hot weather causality). I've always tested anemic with any blood work sometimes more severe than others. I've read that being anemic can effect platelets , my platelets often test low and during pregnancy my platelets went dangerously low (known as ITP).I have a cocktail of blood and genetic mutations making it difficult to pinpoint the orgin of my problems or maybe it's a combination.I have Beta-thalassemia minor,I am AB positive, African-American (mixed with many races), I have red hair and freckles (a gene mutation), ITP during pregnancy (autoimmune disease), Adhd, depression, and anemia. All my life doctors have had difficulty diagnosing the issue with my blood it took them sending my blood to the University of Washington Seattle to tell me that that I had  Beta-thalassemia minor. If  Beta-thalassemia minor is the only blood disorder I have, I refuse to believe that there isn't any symptoms. My blood was specifically tested because there was a problem concerning my blood.

[v8tony]

Reading this post tonight was intense for me... My story fits right in with the people above. I was diagnosed with Iron Deficiency when i was very young (about 5) and was put on iron supplements and my mom used to feed my liver daily (for the iron I suppose?). After these treatments didn't do anything it took them until I was about 9 to figure out that it was something else. I still have a thing about needles because of how many times they took my blood when I was a kid.

Like everyone else I've always been told that there were no symptoms. But, I am ALWAYS tired. It's more odd for me to feel energetic than the other way around. The heat especially affects me and just wears me out. I'm pretty sensitive about being labeled as lazy so I push myself pretty hard to keep moving. But, the comments about being tired after sleeping 12 hours are no joke.

I went surfing on this tonight because I saw my doctor today for a checkup on my Thyroid problems (I've been diagnosed with hashimoto's thyroiditis) and we were talking about my low HC count.

Other then general diet and exercise what's the short list of do's and don't? B-vitamin supplements?

Thanks for sharing, It's just good to know I'm not alone (or crazy)...

[thalminor]

I am 17 and Jamaican i dont know if i have thalassemia beta or alpha but i am always tired, suseptable to minor depression, i have really bad eyes sight but even with the glasses ny eyes unfocus all the time and when i do any form of training (excersise wise) my heart rate is always way too high even when ive just jogged for 5 mins. my doctor says thalasemia has no sypotoms, but it sounds like they are all wrong....

[na78]

I am a 63 yo chinese with minor. My feet are always cold and now my big toes are tingling. Is that due to poor circulation and/or old age? I have no other symptoms that other people have described above.

[avib]

Lady, Thanks for your post .

All read what this woman says, she is much better than me in description. :)



I have THAL B minor diagnosed 2 years ago being 22 then.

Being a child i had slow growth, low stamina and low strength.

Now i am much better. And i would mostly say it is because of the lifestyle/diet.

Eat well. High Protein is the MUST.   remember our red blood cells die faster than normal one. And we have more in number/out body produces 5-6 million more RBC but smaller in size.( low oxygen carrier)
Reb bloods cells are purely protein. So a good protein diet will take the tiredness feeling away.

And Build some muscles for those who don't train. I work as a field engineer with a hectic life.
I have no problem to sleep most likely because i go to bed always tired from job, training or good sex with my girl.

Bless you all and take care.

[avib]

And one last thing i would like to as the community here:

As i explained in my last post, Everything with me was delayed in terms of growth.

I had a physically weak body until recent where with better diet my body is growing real better.

So my question here is:   Do you look younger/physically than most people of your age.?
I am 24 yr man but look like 18/19

is this the case for you?     i want to know if this is related to our disease or it is just me


thanks heaps
avib

[bsugar10]

I am 43 and I have been diagnosed with the disease since my early teens.  I look in my early 30s I do believe that this is related to the disease.  My twelve year old daughter now also has the disease and is have a very hard time.  She is always dizzy an cries because she is scared.  Does anyone have any suggestions.  This forum is great.

[acissejacissej]

I just did a search as my boyfriend has beta-thamlassemia minor, as I was curious to see if there would be any effects for him in the long term. He doesn't experience the symptoms that many of you are talking about. He does always have cold feet and hands, I put that down to him being underweight.

Something I thought I might point out, as I am a health professional , is that a lot of the symptoms you are all talking about are very common in society anyway. Fatigue, depression, a foggy mind, are very wide spread. My job is to work with people with symptoms like this and help them to upgrade their activity. For these symptoms to be linked to Beta-Thalassemia Minor, it would have to be shown that the prevalence was higher for those with BTM that the general population. I don't know the facts on this, but I'm guessing there would be no difference.

However I do know that getting over symptoms such as those described above often takes a lot of hard work and a long term committment to getting better. If you have no identifiable source of the symptoms. Usually you would require a graded exercise program (daily), counselling (acceptance and committment), a consistent sleep routine, and a healthy diet.

Some people with these symptoms will have a deficiency such as vitamin D, B12, iron, however it is best if you have pathology results for this before starting a supplement. Sometimes these deficiencies are linked to lifestyle factors, for example if you don't spend 15mins getting a little sunlight each day, you will be more likely to have a vitamin D deficiency. The reason you would probably not spend much time outside is that you feel tired, and so the cycle continues.

I think it's worth saying that if you did an hour exercise everyday, ate no more than 2000 calories, ate 2 serves of fruit and 5 serves of vegetables everyday, slept 8hrs each night and socialised regularly and did these things consistently for a full year (without stopping because it got to hard), that I would be very suprised if your symptoms stuck around. If you are very depressed, in pain or fatigued you may also need medication with counselling to get to a point where you can commit to improving lifestyle.

[GreekGal]

I read all of these postings and had the inspiration to have a steak dinner to try to get rid of the dizziness/numbness I've been feeling for the past 2 weeks.  It was like a miracle!

Background:  40 yrs old; known Minor since childhood (Greek heritage); always had cold feet; always needed a lot of sleep (and got teased for it); very energetic but when I crash I really crash; always get light-headed a little too easily when exercising; seem to succumb to stress too easily; always have the abnormal red blood cells for blood tests; resist the urge to take iron.  I was recently told that I had borderline cholesterol and so I really cut back on red meat.  Well, wouldn't you know that I started having all of these problems:  I felt dizzy all of the time and had a numb left arm or hand or shoulder or feet for too often to feel comfortable.  I was having a hard time sleeping on my left side at night.  I was starting to think that I was going to give myself an anxiety attack thinking of the possibilities.  The array of symptoms completely puzzled my doctor.  My heart tests and chest x-ray all came back normal.

So I started searching the internet and came across these descriptions of thalassemia minor... what a great realization that I am not alone!  And the steak dinner made me feel new again.  I will still back off of fats to monitor my cholesterol but I will indulge again as soon as I start to feel too weak.  I am considering trying some folic acid too, as I felt quite wonderful during both of my pregnancies.  And - for those of you worried about the pregnancy issue - I had two healthy children and no blood transfusions.

[Susanyoung]

Thank goodness I found this site. It has been an ongoing joke between myself and my sister. We both have Thalassemia Minor and have known for years because my mother was diagnosed when she was pregnant with our older brother. We always complain how we are always tired and feel out of breath and yes we are told we are just anemic. During our pregnancies we required huge amounts of folic acid. It's nice to hear that others have similar    complaints it drives me crazy when I read that Thalassemia minor is asymptomatic which clearly it is not.  

[MDenee]

Hi I just came across this site when looking for information about Thalassemia minor. I've known that i've had Thalassemia minor for my whole life. I was dignosed when I was a baby. I was very sick and in the hospital. I have never had to have any blood transfusions, than goodness. I'm 20 years old now. I'm always tired, always cold, and sick. I get sick easier than anyone else I know and I'm always sick longer than anyone else as well. I don't really know a whole lot about Thalassemia minor. So if you can give me any information please do. One more thing, My boyfriend and I have been together going on 3 years. We've been talking about getting married and having a baby. Only I have Thalassemia minor and we're not sure how it would effect the baby. We know he has to get tested to see if he's a carrier, but what type of test does he have to go through and how much do they cost?

[MDenee]

Another thing. Beef is rich in iron, or so I've heard, and like everyone else I have low iron, but I'm highly allergic to beef, so bad that it could kill me. So what can I do to higher my iron, without eating beef?

[iceman1613]

Hey everyone!

I can't say enough how much relief I felt when I stumbled upon these site while looking for information on Beta Thalassemia Minor.  So here's my story...

When I was 18 years old I joined the Marines and this was when I really began getting regular medical checkups (because they made us) and every time I had a standard CBC drawn my H&H kept coming back low and therefore the doctors just told me I was slightly anemic and to take an iron supplement.  No matter how much iron I took my H&H never increased to a normal range but they just kept telling me to take iron.  I got out of the Marines at 22 and up until this point I still never really had any symptoms of anything that seemed abnormal for someone my age.  I'm 25 years old now and approximately one year ago I began noticing some things about my health change that seemed quite odd.  I started to notice that my feet and hands were continuously cold for no apparent reason.  It could be 100 degrees on a summer day in August and my hands and feet would still be cold.  I also noticed that my skin began to be clammy at times.  I never really knew why this was going on and just kind of blew it off, but it never really stopped and still occurs to this day.  About three months ago or so I began noticing that my heart would go into an irregular beat pattern that would last for approximately 30 minutes or so, and it would correct itself after that.  Whenever this happens it is very uncomfortable and at times feel on the verge of passing out.  This has happened four times over the last three months and happens "out of the blue" and for no apparent reason.  The irregular heart beats were enough to get me to go see my primary doctor.  He did an EKG and everything was normal and drew some blood.  This is when he told me that I was slightly anemic, again!  He also checked my iron levels which came back normal, which puzzled him for a second.  This is when he asked me if I have heard of Thalassemia.  I said no.  He told me to ask my family if they have ever been diagnosed with it and so I called my dad and he said he tested positive for Beta Thalassemia Minor and so has his mother.  I told my doctor and he drew some more blood for a hemaglobin electrophoresis test, which the results just came back and I also tested positive for BTM.  This is when he told me that there isn't really anything I could do about it and that I shouldn't really have any symptoms from it.  He just told me to take a multivitamin everyday.  I thought it was weird that a blood disorder could have no symptoms so this is when I started googling BTM and this forum popped up!  

I find it crazy that all literature says that there aren't any symptoms for BTM but just by reading posts on this forum most of us experience the exact same symptoms and problems.  It is comforting however knowing that I'm not going crazy and others with this disorder experience many of the same problems.

Some other symptoms that I also experience or have but am not sure if they are related to BTM are: excessive stress/nervousness/anxiety, looking younger than my actual age (I'm 25 but could easily pass for 19/20), always tired no matter if I sleep 6 hours or 10 hours a night, eyes constantly feel heavy and continuous dark circles under my eyes, and my bone structure is very tiny.

I hope this helps someone as much as this forum has helped relieved some of my stress about this issue.  BTM is very real no matter how unimportant literature makes it sounds and the symptoms are even more real!

Chris

[jammed]

Hi Everyone
i am now 42 and was diagnosed hypothyroid at age 15, as i was tired and tired and slow , chubby, a bit on the yellow side in palor, then i took thyroxine which boosted me at first but as life  went on  the tired thing was still their and the severe bloating at random started. More tiredness and odd yellow palor at times would transform me and people would wonder why i looked different some days. i had blood tests and Anemia would raise its ugly head, so they said to take iron, -didnt do a darn thing, prbably went straight to to the waste bin -loo - as i wasnt absorbing much of anything but heavily blaoted. My hair was still dry and skin rough, fatigued even on thyroid med. in my thirties i felt like i was asleep the whole time, and they thought i was depresseed. so i was taking something and i felt like an unemotional rock. that still didnt help. so i am not on antidepressant now. it was short lived. i even went gluten free which has really helped and still am.
i got to my forties and still tired etc and brain fog central was more noticable as took a design course and coudnt focus much ,,it was just like being back at school again,,, and sleepy as hell even thought this was something that would make me jump out of bed in the morning, my body and brain jusy wouldnt stay ON for long. i completed the course with a struggle. If i said was exhausted people would think i was whinging or not wanting to do things, which wasnt true, so it was easier to stay quiet as no one understood me. so i would sit in agony as my brain faded and exhaustion set in. shoulda taken up acting.

i then went alkaline diet for a bit -at first it is good but then i stared to fade again. Do not do this if you are Thalssemic. you will feel worse.

at 41 i was working on a design set for a show and while sourcing costumes and moving things the dizziness grew like a seasick plague. and eventually couldnt get up off my feet without falling into the costume rack. I became severely bloated and yellow that day and my belly looked like i was having aliens, the stretching was painful.
\off to the hospital it was that day.
Blood test was severe hypothyroid even though i was on thyroxine i was absorbig it, the Thalassemmia was the diagnosed, My mum Persian and dad Hungarian, plus mum was ALWAYS anemic as far a i can remember. That test  was  wher the anwser was. THEN,,, the doc asked me how i gennerally felt and it was all of the above including all the other blogs on this page.
The only thing left was to   have a blood transfusion......i freaked out,,called my sister to come in and talk to the doctor and thought that if a diet coud fix it and it the anwer was ... NO- IT WOULD TAKE YEAAAARRRRRRS.  So had the transfusion,

i felt wierd after it but it got better and i started feel like i could breath easier, walk up a hill with no trouble, think straight, and had better sleep.( my pyschic ability was lost though) i also had a colonic - 3 sessions at a clinic, this cleared my bowel of old toxins too and any old foods. i still took iron tablets with vitamin c,
a few months later i could feel i was fading again, so looked into eating more protien foods vegetable and meats. i have a pea   protein shake and a whey version so i alternate here and there. i eat lean steak once a week and well cooked chicken and salmon accompanied with raw salad and some cooked veggies, i have fresh lemon juice in my water for vit c and alkaline reasons, i drink water but not gallons, daily, i eat low fat cheese- houloumi is the best and yummy. i still am gluten free and stay off sugars and processed packaged foods, Also eat foods that are a precusor for your body to make Glutathione. You cant take it as your body makes it itself but some people make more than others. i reckon Thelassmics dont make much,

so there you have it, thas tmy end of the stick, feels good to finally share with like minded people that have been there too.

ive boosted my protein with fresh veggies, must must eat meats- thats the key but dont over do it , and remember your vitamic c so you can absorb all you viamins form fresh food.

Good Luck All,

Jennifer H
Australia

[Laura_Lee_78_96]

I'm a fairly new mom my son is 9 months and was just diagnosed with Thalassemia. Right now from my under standing it's minor and we don't have to worry. The thing that does worry me is we're not sure from where in our family's this came from because as far as mine and my husbands parents know no one has ever had any form of Thalassemia ever diagnosed. My husband and I are both going to get blood tests to see if either just one of us or both of us carry the Thalassemia Minor gene. I was planning to have another child when my son was 2 but now I'm not so sure if I could handle that. I'm stressed as it is with other things but now to know my son could possibly get very sick has me even more stressed. I can say that growing up I've always had cold hands and feet like some others have mentioned. I was and still am always tired even after numerous hours of sleeping.  I've always had a mild case of  bi polar depression growing up but didn't find out about it until I was in my early 20's. My ethinic back ground is French, Fin and Swede. I can't say much about my husband from before we met only from that point on. He's a hard worker and as long as he has something keeping him going tiredness don't bother him. As soon as he's out of work though he's very tired and could sleep 12 plus hours if I let him. As for his temperature of his hands and feet they never get cold in fact in that aspect he's the total opposite than me his body gets warm and stays warm. In fact he has to take very hot showers where I can only take warm showers. My husband's ethnic background is French and Italian. I did a little mapping research and both France and Italy are on the Mediterranian Sea. Where as Sweden and Finland are on the Baltic Sea to the North. I'm hoping to get more answers for my situation soon because when I worry I have a hard time sleeping and then that makes things worse for me. If anyone has any information that may help me I'd be grateful if they pass it onto me. What I've found on line so far just seems to bring up more questions than getting answers.


Needing friends in the same situation as me.


Laura P.

Massachusetts, United States

[chrisgiggs]

I can't believe it. So many people experiencing the exact same thing. The constant tiredness and the cold feet. I've known about my thalassemia since i was a kid.

My main problem with the chronic fatigue is how unconcentrated i am in my life. It almost feels like im unconcious half the time.
I don't know what I do right... but sometimes my energy levels spike and i can live life like i want it. Maybe it's the diet. I know for a fact that sunlight helps me a lot.
The other problem is cosmetic. My face turns a yellowish colour. Usually its not enough to notice but sometimes its really bad and people comment on my paleness, that i should get some sleep etc.

For me exercise and spending time in the sun keeps me energized. But still I crash and sometimes just spend days in bed, never getting up, letting my dishes build up and so on. If there is someone out there with some knowledge about diets, supplements, drugs, anything. Please don't sleep on it, let me, and us know.

[chrisgiggs]

"Some other symptoms that I also experience or have but am not sure if they are related to BTM are: excessive stress/nervousness/anxiety, looking younger than my actual age (I'm 25 but could easily pass for 19/20), always tired no matter if I sleep 6 hours or 10 hours a night, eyes constantly feel heavy and continuous dark circles under my eyes, and my bone structure is very tiny."

Every member of my family has thalassemia minor and the dark circles under the eyes are definitely a symptom.
The tiredness is by my very unscientific extrapolation something that only affects some of us. My mother, father and sister are all very active. I try to be but crash and burn out regularly. They don't experience that.

[Laura_Lee_78_96]

Thanks iceman1613 the information about the following possibly being systems is a good thing to know since I also have them as well and would never had thought to consider then at all for anything: excessive stress/nervousness/anxiety, looking younger than my actual age. I also have always had dark circles under my eyes for many years I don't know when they first started to appear but I want to say about if not before the Junior High age range. I have my moment when it comes to being unable to concentrate more so now since I'm a stay at how mom. I've also always done better when it's nice and sunny out but didn't know i could be a symptom be cause when I was diagnosed with depression they said that it was part of the depression because sometimes the time of year and weather could affect the depression. I never had anyone ever mention paleness to me until within the last 4 years and it was more so during my pregnancy than before I was pregnant and usually when I felt weakened and tired or when I had a cold. I almost always now feel like I could just stay in bed but being a mom keeps me on the go but because of how I feel at times I have to leave my son with toys in his crib whether he likes it or not because I Start to get to weak to hold him if I don't get some sleep.


Good for me to see I'm not the only person dealing with a  lot os these symptoms.


Laura P.

Massachusetts, United States

[Rysia]

To All,
I have thalassaemia intermediate, step up from minor and therefore I need blood transfusion from time to time. Having more severe form of thalassaemia I feel I can help you...First of all your symptoms are real. There is no such thing as any form of thalassaemia without symptoms. Take as example P. Sampras. He got thala minor and guess what? For a long time he was hiding his condition because he that he got disadvantage, especially in long torment and don’t want his opponents to know about it! So you are not paranoid. But symptoms you are talking about are not all what is to it. Same are hidden and will be know in years to come. Let me tell you. Some of you already discover that you are bone structure is tiny, that you look younger. In years to come you will discover odd small abnormality in your bones, same little dents and bumps (especially on your skull) and in long run all of you will be prone to broken bones and osteoporosis. Problem with bones arise from fact and your bone marrow is in overdrive producing hemoglobin and neglect because of it production of bone cells. There is nothing what you can do about it, only try to maintain your bones. Dairy products aren’t as important as magnesium is. Supplement of magnesium is THE MUST for rest of your life. Again supplement of iron will do nothing for you but folic acid is again a must. Other things I found very helpful are Butejko exercise.
Butejko exercises are for asthma sufferer, but because your blood does not carry enough oxygen you will benefit from it too. Eating protein is good for your strength but do nothing for your blood. Trick for me is drinking wheatgrass. From time when I start drinking it I do increase time between transfusions from 5-6 months to about 9-10 months. Every transfusion carries some risks in it and giving you ferrin overload, this is damaging your liver and therefore you have to go thou chelating therapy and this is not a fun, less transfusions is better. What I wrote should help you to have better life. I too, found appalling that thala minor sufferer are left alone with there problems. True, thala major and intermediate are life treating conditions, but quality of life is important too.

[anneybell]

Like everyone here I have the same symptoms, particularly the rtiredness which is why I was surfing around today again!. I found the reference to the irregular heart rate interesting as I have a pace-maker and have had AVF for most of my life. Thought to have inherited from Dad who also had AVF. After reading some of your posts here it has made me think a little more of the cause of my irregular heart rate. This condition is no joke and definitely not just in your head. I have always wanted to play golf and I do now with a lot of huffing and puffing and only 9 holes and most of the girls think it is to do with my pace-maker and its not of course. I just dont want to get into it all so I have said nothing. No one understands anyway. Except you lot.
I inherited it from my mother who inherited etc etc and we have tracked it down to the Jersey Islands and my distant French relatives. I also have 2 healthy children with no BTM but had ceasarians and bed rest. And finally I try to be positive and do look younger, coming up to 60 next year and a friend asked when my 50'th was next year as we had been planning to have it in Europe next year and they were working there own holiday around it.  All sounds a bit spooky doesnt it, maybe we are the new race. Seriously though thankyou for the advice on wheatgrass, liquid iron suppliments and folic acid info. It has motivated me to look harder at the lifestyle and food choices I am making.
Ann.