Can Beta-Thalassemia Minor have symptoms? - Maternal & Child

flomartine73

Mar 20, 2011

i suffer with thalassemia minor every pain i felt like constant foot cramping joints feel like blood is stuck light headed when i talk to much then mouth twitches because of low oxygen had sonograms done spleen slightly swollen when i was pregnant blood count dropped down to 4 not normal

chadhlfg

Mar 21, 2011

To: Beta Thalassemia Minor symptoms

I am a 47 year old male and have Thalassemia Minor, I am so glad that I found this forum. As I was reading all of the other posts I had tears in my eyes, because for the first time in my life I felt like I wasn't Imagining my symptoms and like I wasn't alone. I have been told by Doctors my whole life that I would not experience any symptoms from BTM. Well I have the same symptoms as many people on this post, so the Doctors were clearly wrong.

What I'm interested in is finding out how to best live with this condition and have a normal productive life, and to be able to enjoy working out and keeping fit. Because it is much harder to exercise and keep fit with BTM.

I will post some of the things that I have learned about myself through trial and error when I have more time, and I would appreciate it if any other that know about proper diet and nutrition would add to this post. We need to learn from each other what the best treatments are which I imagine are mostly diet, supplement and excercise related.

I'll post again with things I have learned over the years and would appreciate it if other would also, specifically with regards to nutrition.

SADiaz

Mar 22, 2011

To: Empathic

I agree with you 100%!!!!! I stuffer almost all the symptoms of Thala Minor, I found out we had Thala Minor at my 1st borns one year blood work result, Dr told us to not worry that nothing more the low blood levels would come of this ... I have three children that have Thala Minor, I don't know how bad it is, my daughter is 5 and her blood test came back at blood level 8 and everything else below normal, my son came back at 9 and most of the other levels at below normal. My oldest daughter will have blood test tomorrow along with me so that I can have a full blood record of all of us when we go see the Hemoglobin Specialist... I am always tired, I have migraine that keep me in bed all day, I don't handle stress at all well, I have many mood swings, and everyone tells me I have obsessive compulsive disorder, they say it joking but I know they see something I don't, also I am very impulsive, till today I had ruled that as my personality. I see now that might not be the case, all these has affected me in my everyday life with family and life style... I sometime am too sick to even get up and cook for my family and also I sometimes have the full energy in my head to workout then when it comes to working out my body does not respond :( I am hoping that the specialist can help me with anything!!!!!!!!

Jules919

Mar 23, 2011

To: TanW

I have beta thalassemia minor and for the most part, I feel like . Yes, I've had doctors tell me that this cannot account for my fatigue. There is nothing else abnormal with my blood as I saw a hematologist and had just about every other blood test which exists.

I agree with those who maintain that having the thalassemia trait can cause the symptoms which you describe. I don't give a what any doctor says. I am convinced this is the reason for my tiredness. My CBC's always show that I am anemic (NOT due to iron deficiency, as I have had that tested).

Just me two cents...

chadhlfg

Mar 24, 2011

To: Beta Thalassemia Minor symptoms

This is my second post to this board.

My symptoms are tiredness and fatigue, mental fogginess as many of you have described. Also have Migraine headaches, since so many of us complain of headaches I wish a study would be done on the relation of BTM and Migraines. Only medication that works for my migraines is Immitrex. I have both the pills and the injectable prescriptions, headache is gone in 15 minutes with Immitrex, and nothing else woks.

I get fewer headaches when I eat right and exercises. With BTM we are very susceptible and very sensitive to food. Proper nutrition for everyone is important but for us it's essential because without it we wont have the energy to exercise.

I try to stay away from bread, pasta and rice as these things tend to increase the fatigue and fogginess in my mind.
For me proper nutrition is mostly Fruits, Vegetables and lean meats. I feel that I must eat lean red meat cooked rare, I also eat chicken fish and shell fish. I recently purchased a vita mix blender check it out here,

https://secure.vitamix.com/acb/stores/4/Vitamix-5200-with-48-oz-Container---NEW-P2332C0.aspx

Expensive but I purchased mine at Costco for $399 new. The Vita Mix is a life saver for me because it makes it easy to get all the fruits and vegetables in every day. For some reason I crave spinach but hate to eat it. I make several drinks in the Vita Mix blender that contain spinach and broccoli and it taste great. And unlike a typical juice machine that discards all the nutritional fiber and other nutrients, everything stays in the Vita Mix blender and gets pulverized into liquid.

For me I think it would be very hard to stay on a diet of fruits, vegetables and lean meats without the Vita Mix blender. Since purchasing it and using it I feel much better, my body is finally getting the greens that it has been craving.

Recently I discovered that pushing myself too hard with exercise over and extended period of time will bring my hemoglobin count down. High for me is 12 but if I push myself too much working out for too many days in a row it will drop to below 10. I found this out this past summer when I had entered a bike race that was several days long, my legs wouldn't recover and I almost passed out. I went to a Hematologist and he told me that any Doctor that told me I wouldn't have any effects or symptoms from my BTM was dead wrong, "finally Vindication". The Doctor told me that Tennis Pro Pete Sampras has BTM and that if he doesn't win the Match quickly in the fist few sets that it's over for him that he will be exhausted and if the match goes too long he is whipped out and loses. I wish a study would be done on how excessive exercise effects Hemoglobin levels in people with BTM.

I hope that others will post some of the things that they have been using to help them cope with the symptoms of Beta Thalassemia Minor, because we all need to learn from each other what works and what doesn't work.

Stephanie0515

Mar 25, 2011

The brain fog is the worst part of my symptoms- I was just diagnosed today. I'm 19 and never had a blood test all my childhood so it's not too surprising they missed it. How does everyone deal with the brain fog? Symptoms of dizziness and drowsiness and mental fog started about a month ago. How does everyone deal with this? And do people experience flareups?

mfotopoulos

Mar 28, 2011

To: BTM

I am a 44-y.o male MD with BTM, living in Europe. I was diagnosed in med school by a bright French hematologist.
When I work at the hospital and have a busy shift I can´t take it physically for more than 6 hours now, even though I work up to 10 hour shifts as an emergency doctor.  Some years ago I worked up to 24-h shifts sometimes fainting.  It is hard physical work.  After a 10 hour shift it takes med 3-4 days to recover:  Migraine, fatigue, muscle pain, sleepiness, my wife even says my driving is bad (only the day after a hard shift).  There is no energy left for work-out whatsoever.   I am now quitting hospital-work to work in a pharma company sitting on a chair for 8 hours.  I am sure this will give me an improvement in quality of life and energy to play with my kids.
A few pieces of advice, one especially to you fellow BTM-patiets  in the US and Australia:
1. Make the hematologists do some studies on BTM and repeated hard work.  My European collegues are not likely to do it.
2.  Never take iron!  Your Dr might prescribe it, not knowing about the iron-loading problem in BTM.
3. Take Tablets of Folic Acid 5 mg once per day.
4.  Do work-out but avoid repeated hard physical work (either at your job or as a sport) for long hours.  Change job if that is the case.
Take care all of you.

ks1979

Mar 29, 2011

i'm grateful to find this forum! i too am beta thal minor. i am 32 yrs old and was diagnosed at around 13. For the most part i had the typical symptoms, easily fatigued, sleepy, dark circles under my eyes, very pale during menstral cycle, mental fog. But since 2006 i have had some seizures. i am still looking for a doctor that does not dismiss my thal minor and just want to prescribe epilepsy meds (no one in my family has seizures). I think i am low in minerals even though i do take a multivitamin. Any specific tests i should ask for? I am seeking a hematologist that has some knowledge in thal issues (the ones i've talked to and visited usually dismis my condition as not serious). My regular dr just prescribed vitamin d (my levels are quite low) which i will take, and also iron which i won't take until my iron levels are tested. I am considering taking add'l calcium. Also, does anyone take b12 injections?

chadhlfg

Mar 30, 2011

To: ks1979

ks1979

I have tried the B-12 injections, I actually have a subscription for them and can administer myself an injection once a month however I prefer to use this Vitamin Product, called Fatigued to Fantastic here is the Amazon link:

http://www.amazon.com/gp/product/B0017K8VTE/ref=pd_lpo_k2_dp_sr_1?pf_rd_p=486539851&pf_rd_s=lpo-top-stripe-1&pf_rd_t=201&pf_rd_i=1583332898&pf_rd_m=ATVPDKIKX0DER&pf_rd_r=19QQGEM7R3PD6EYXKW4K

Or you can just Google "Fatigued to Fantastic" there is a book and a vitamin supplement based on the research from the book.

The B-12 injections tend to increase my appetite. I prefer the Fatigued to Fantastic vitamins that have been developed by a Doctor who studies Fibromialga and Chronic Fatigue syndrome. The mixture is a powder that you can add to water or juice and it makes taking vitamins so much easier and has all your B vitamins and Folic Acid intact in one dosage a day, rather than trying to swallow a hand full of pills, very convenient.

The more I read it seems like some of the symptoms of BTM and Chronic Fatigue Syndrome seem very similar.

Chad

petrohori

Apr 11, 2011

Wow this is great. I'm 36 and iv only known for 8 yrs that I have BTminor. I'm so tired all the time dark circles etc.. I need lots of sleep but 3 kids makebit hard. Anyone taking b12? Heard it could help. And folic acid.. this ***** because there's nothing we can take or do to feel better... I use to take iron when I didn't know I had this. Not good!

celesteadvm

Apr 17, 2011

Well, here I am after reading all these post. Im 48 and  was diagnozed with BTM a year ago,
These are my sympthons:
My whole life I was tired, chronic tiredness,
headaches, migraines ( One week in the hospital, never find anything)
Cold hands and feet.
Awful periods, now with periomenopause.
stomach pains, blowed
low blood pressure 100/60
my body aches, muscle pain.
out of breath when walking short distances
cant stand being in the sunlight.
sometimes anxiety
Some days my body swell up (feet and hands)
If i have to drive long distances, i cannot more than an hour ( I feel sleepy)
HB level 9-11

I had 5 kids ( C- sections all of them) last one were twins and one of them die awhen was 4 months. Only one of them could be tested and was negative.

I never need any transfusion.

two weeks ago I went to breckenridge, CO ( more than 10, 000 ft) and doctors though I ad altitute sickness, from prompt care to ER. My HB was 13.3 because I was dehydrated, had huge headache, took so many pills, vomit blood, blood pressure went really high for me 155/10, pain, pain and more pain, fever, weak. my eyes hurt. xray of my chest showed nothing, scan of my head, nothing. blood test nothing showed.  My concern started the next day i left the hospital. on my way back home my eyes ( the white part) were yellow, dark yellow, and around my eyes from red to purple and black..... (looked like somebody hit me on my eyes) i though jaundice.
My ALT  and AST (liver enzimes were elevated)

My primary doctor is monitoring my liver enzimes levels. She doesnt know what could  caused it.

I think this coud be : since I was a little kid  mom used to give us iron, and also i was taking few months ago iron, B12, and many more vitamins. I didnt know it could cause damage in some organs. Im sure my liver is mess up. My doctor doesnt want to do any extra examns of my lives, no scanner until she is sure my liver enzimes keep elevated.
well my next app is in one month. My second test was a week ago and she is not calling me back, i called twice to know the results.  I dont want to wait more time. It could be hemochromatosis or hepatitis. Im still working and my work takes me physical effort.

What can I do? I dont know.

something else..... when the hematologist diagnozed BTM was the first time i ve heard about it.

Tia118

Apr 26, 2011

To: all

hello, i could not go to college today because i was so tired i could only climb down the stairs by holding onto the railings, and i am only 23!
i have been suffering from excessive tiredness necessitating into leaving classes in the middle or simply not going since i was 12 years old. it happened once or twice a year, but was enough to get me depressed. my parents are doctors, they thought it was iron deficiency anemia and put me on iron supplements for a long time. may be it was IDA because my symptoms improved when i regularly took them and worsened when forgot for at least 2 weeks. my hemoglobin was around 11% that time.
it got worse when i moved to a big city for higher studies. i neglected my diet and nutrition and passed out during a practical exm. the frequency of symptoms increased and i was diagnosed as a thalassemia minor by lab investigation. Hb% was 8.5. i was given folic acid everyday, drop iron and told to watch diet and take regular exercise. when i maintain the routine, i am tolerably well but if i neglect it for some time, suddenly one day i feel so tired i cannot go to college, can not change dress or can not even move. this passes after some hours. i have taken 2 days leave for at least 3 times in the past 4 months.
this is really depressing- missing important classes or group discussions or exams, and to top it , my friends think i make it up, bcoz our subject is demanding and every student is happy with a leave. in fact some times i like to think i make it up. it gives me a false sense of control over my body- my body is ill because i want it to be ill. but it is not true. today i was ready to go to college- dressed, combed and my bag stuffed with books. but i could not go.
so i Googled this forum and read and relieved that many are suffering from this symptoms and they are coping with it. it was a good reading. i am now determined to maintain the routine to good health and reducing the frequency of symptoms.
thanks to you all.
Tia

navodya123

May 01, 2011

To: ashattack

thank you very much for sharing you expirience.i'm a17 year old teenager. my mother is a thalassimia minor paitient & as many of family believes i too have it.i too have experienced feeling fatigue specially after a run .i was a wushu player,& because of this wierd conditions i experienced i had to stay away from certain exercises,(specially when running distances) and now due to feeling fatigue,dizziness and getting a blur image at times,i have given up it.also i sometimes feel very tired when studying so after reading this fourm i ithink i too can continue wushu again

navodya123

May 01, 2011

To: beechgirl

thank you very much for sharing you expirience.i'm a17 year old teenager. my mother is a thalassimia minor paitient & as many of family believes i too have it.i too have experienced feeling fatigue specially after a run .i was a wushu player,& because of this wierd conditions i experienced i had to stay away from certain exercises,(specially when running distances) and now due to feeling fatigue,dizziness and getting a blur image at times,i have given up it.also i sometimes feel very tired when studying so after reading this fourm i ithink i too can continue wushu again

navodya123

May 01, 2011

To: ddbear52

thank you very much for sharing you expirience.i'm a17 year old teenager. my mother is a thalassimia minor paitient & as many of family believes i too have it.i too have experienced feeling fatigue specially after a run .i was a wushu player,& because of this wierd conditions i experienced i had to stay away from certain exercises,(specially when running distances) and now due to feeling fatigue,dizziness and getting a blur image at times,i have given up it.also i sometimes feel very tired when studying so after reading this fourm i ithink i too can continue wushu again

JulieChng

May 11, 2011

I am Chinese, F, 50, with B Thalassemia from my mother. I used to fall asleep in classes and lectures. My face turns very pale after exercise. Headache and dizzy come and go. Migrain no more after I took Chinese Herb called "Ba Chen". There are lots of crystals formed in my blood. I easily get skin rashes from seafood (high iodine) and dirts. In 2007, my mother was treated for irregular heart beat. One injection of Amiodarone almost killed her. So I suppose I might be allergy to Amiodarone as well as other medicine with iodine content. From Julie, Malaysia.

mila3400

May 14, 2011

I was diagnosed with thalassemia minor as an infant, and have had many of the symptoms listed above: constant fatigue, fainting, low blood pressure, paleness, headaches.
BUT I also have completed 2 marathons and am now in veterinary school and I live a basically normal life (although it is really hard to get through classes being so tired all the time).
I just wanted to share this with those who are younger and/or newly diagnosed: you can still have a normal life! It is comforting to know that others are going through the same thing, but there are SO MANY worse things that we could have!

mzlady404

May 15, 2011

I am a 34 yr old female I was diagnosed with Thalassemia minor 2 yrs ago. Growing up in my teenage years all I did was sleep. I had to have a nap everyday and I could sleep all day and get up for a few hours then go back to sleep for another 8 hours, I'm not sure why my mother ever took me to the doctor to see why I slept so much. I was diagnosed with sickle-cell trait when I was born but that was it. After having two kids I decided to join the military and I had a hard time in boot camp no matter how much we ran I could not keep up I always run out of breath so easily and quick. I pushed on and some how made it through. Now that I have been in for a little while running still hasnt gotten any better for me, I have been to so many doctors and all they say is I need to make sure I get 7-8 hours of sleep , exercise and change the way that I eat. I do all of that and still struggle. So I ended up seeing a new doctors and he said he wanted to test me foe Thalassemia I had no idea what it was but did not want to have it. So after waiting 2 months he finally called me and told me I had it. He said it was similiar to sickle-cell but in stead affects my other blood cells. I'm like omg! He also said that since it wa sonly minor there should be no symptoms. He said if I had major than I probably would not be alive today. But reading this forum has helped so much! I still cant run much and try so hard but cant get my breathing under control . Reading this makes me realize there is nothing I can do to fix that issue. I want to build my endurance but how is that possible now? If anyone has some suggestions that has worked for them please let me know. I also have the heart palpitations , I was diagnosed with panic attacks, anxiety, I have headaches often, I am always, always cold no matter how hot it is. I never understood why now I know.

wygvn

May 21, 2011

ha sanyone had digestive problems including sever bloating with these other symptoms?

Chipodzo

May 24, 2011

I have got a 12 yr old girl who has thalassemia b trait from her dad side. She has been suffering from all joints pains, tiredness, back pains, swollen joints, headaches, swollen armpits, feels pain in her hands that even writing can be very difficult, feels very cold especially her extremities even if it very hot.She used to play tennis and dance and have long stopped because she can bear the pain. She struggles with walking and managing stairs is a nightmare. Been to the doctors that many times and some suggests its chilblains whilst others say its growing pains. Recently she has been in hospital for more than 12 days and they did all the tests they thought could be causing the problems and found nothing. She was discharge home on paracetamol and diclofenac with very little effect. She is in a lot of pain and doctors has suggested physiotherapy, occupational therapy and psychologist to help her with the pains. I was very worried about this and when I went on line searching I came across this site and I very thrilled and now I know why my little girl is in this much pain. Tomorrow I am going back to the hospital to discuss this with the consultant and see if they do something for her. I felt very depressed and thought I was letting her go through this pain because probably I was explaining to the doctors properly. I would appreciate if you guys can tell me what relieves these pains because my daughter is struggling as am writing this.
Thank for all for contribution because of this information I now know why she is going through these pains

bdaysurprise

May 24, 2011

Hello, I am 26 and just found out I'm pregnant. I have always been told not to take iron, but all the prenatals have it... anyone know if it is ok for me to take them??? I read on a previous post to visit this website http://sickle.bwh.harvard.edu/thaliron.html and it says during pregnancy it is ok to prevent iron deficiency.

Akshay1964

May 29, 2011

To: All

Hello,
I am a Homoeopathic Physician. I have gone through all the posts and am aware about the various kinds of sufferings and problems faced by each one of you. I have had chance to treat patients having both major and minor types of this disease. We all know that because of its genetic nature, the disease can not be cured, But, my experience in Homoeopathic treatment is very favourable, in the sense - health of the patient is improved, with increased capacity to fight infections, decrease in fatigue and depressive feeling. Patients can achieve better healthy life.
Akshay

paulabenoit

May 29, 2011

Hi I have thal minor as well.
First I was told to get off of iron pills that I need to get iron naturally. Something along the lines of my body won't absorb it and it will just build up in my organs.
Second, I agree with so many. Not enough knowledge around this. I was told that I would hemorrhage if I was in an accident or during child birth. Long story short. I did hemorrhage a lot during child birth though I had forewarned my family dr. about this concern. He said there's no correlating between thal minor and clotting. I was an athlete all my life. However, I still hated getting up in the am as a child. I went to bed early on my own. I liked and needed10 hours sleep for sure to keep me going. Now, I'm feeling worst. I joined another group on line and it shed a lot of light. I need to read more comments here as well as far as diet, but I read about the b vitamins. It's hard I know. I have days when I don't want to get out of bed..I don't work full time, it's far too hard on me. I have but it just kills me. The fatigue is too much.. MY hubby doesn't get it.

mattmadjerich

May 31, 2011

I'm an 18 yr old male, and I've had beta thalassemia minor ever since i was born.. At a young age the symptoms didnt really affect me, but now at an older age the symptoms have grown upon me and affect me on a day to day basis.. I have a general feeling of being ill, and fatigue easily quite often.. This disorder has definitely affected my cognitive state, and I always have a type of haze over me, and find it hard at times to think clearly, formulate words, and at times i panic because I feel as if I'm losing my mind or I'm schizophrenic... I know that I'm not however.... But I do believe that along w/ the thalassemia, I have a disorder known as "depersonalization", in which an individual feels as if they've become detached from their own body, and the world around them.. I tell you, it ***** living with it... I take folic acid on a regular basis, but i still feel severly fatigued when i take it, and my brain fog doesnt dissipate.. I wish I could wipe away this dread disorder, and be free of all it's ailments...

mommabull

Jun 05, 2011

To: Michelle

I also have Beta thal do not give your children iron, they most likely are not iron defficient and it can be dangerous in someone with beta thal because the body will store it in places and cause iron toxicity. My grandmother was killed by her hemotologist because he gave her iron infusions weekly and it caused her to have iron toxicity in her liver and quickly kill her, you think he would have known better. I did not know what was going on until I went to see him and he got plum mad at me because I refused an iron infusion.

Thanks Michelle Bull

bargaingirl

Jun 10, 2011

I never knew there was a name to the symptoms that I have had all my life:

Migraines
Cold Hands & Feet
Depression
Joint Pain
Back Pain
Weakened Immune System
Fatigued
Shortness of breath on exertion
Occasional Numbness in hands & feet
Horrible Heavy periods
Hemorraged after daughter was born
Pre-eclampsia with Both children
Anemic (all my life)

My doctor just mentioned Thalassemia as a possible diagnosis and is sending me to have further bloodwork done. Never heard of this before but know it all makes sense after reading others that have posted. There is a Name to what I have suffered from all these years.

Scouse0069

Jun 10, 2011

Hi

I am a 42 year old male and have just started a variation on this topic of BTM and links to male problems. I would apreciatte thoughts on the subjet. Thanks

Question - beta thalassaemia minor / erectile dysfunction

Zeiineb

Jun 11, 2011

To: all

hii
i'm 16 years old n live n australia, i just found out that i got thalassemia minor, my mum suddenly wanted to take me t see a dr. since i was 8 i'v always been dired, dizzy,stumich ache, sleepy and fainted a couple of times at school while playing sport. althought i'm very active i'm always laying down on the couch with my pillow and blanket.
i didn't know all this was caused buy thalassemia but thanks to you guys i know why i'm always tired. it's kind of lame, instead of going out and have fun i rather stay at home and sleep as much as i can.

mmme4

Jun 13, 2011

To: all

Went to see a new general practitioner today with copy of my latest bloodwork(3/11) ordered by my OB-GYN. OB-GYN told me I was anemic and to take vitamins with iron. New doctor took one look at my bloodwork and said you may have thalassemia. I am a 51year old female whose bloodwork has never showed indications of thalessemia prior. New doc ordered more bloodwork to rule it out or in. I am pretty active but have been feeling a bit more tired lately. I can do 45-60 minutes of aerobic exercise but am out of breath when i climb stairs or run. Saw a neurologist for numbness and tingling in fingers/arms. He ruled out MS but could not give me an answer for the numbness. I am puzzled as to how this could suddenly pop up.

habuki

Jun 21, 2011

I'm a 32 year old male and was diagnosed several years ago. My doctor said "don't worry about it" but the strange symptoms I've had on and off over the years mirror the ones by people here..

-Very hard to wake up on the morning
-Cloudiness in my head, almost to a point of dizziness
-Feeling like I can't catch my breath even though oxygen levels are normal
-Fatigue even if I get a lot of sleep

Besides the first one, the remaining three usually come and go. (Lately I've been getting paper cut-type cracks on the side of my mouth and wondering if that's somehow related.)

It kind of ***** that there is really nothing I can do about it. My sister has the same condition with almost identical symptoms.

Cerisano

Jun 26, 2011

To: all

I was diagnosed by a very alert doctor in the 70's when I was pregnant, before this I had always been told that I was a bit anemic or asthmatic and just prescribed iron pills. have had symptoms similar to the rest of the stories on this site. However, recently after a very stressful time I might add, a different doctor said I was diabetic. On the way out of the office after this traumatic consoltation, he simply mentioned, Oh yes, we also have to do something about my hemoglobin level, when I said...."but I thought those numbers were good for my Thallessemia....he replied Oh yeah I forgot you had Thallessemia. After leaving the office I tried to do some research on the effects of blood sugar levels and Thallessemia, is there anyone out there that knows anything about this?????? I have been very deligent in my diet and don't want to take a lot of medication until I find out for sure. I don't feel well when my blood sugar is close or below to 6 but I feel quite well when my blood sugar is closer to 7 and between 7 and 8. I would like some feed back before I go back to the doctor and insist he do more research on this. Thanks.

thalabetaminor7

Jun 27, 2011

THE ANSWER IS FOLIC ACID. I was diagnosed, when I was a teenager and was never treated. During my third trimester, with my first child, I had low hemoglobin and hemocrit levels. Iron is not the answer. Our red blood cells are not formed correctly and cannot absorb the iron. Try folic acid, by prescription and retest your levels.

fjkin

Jun 29, 2011

I am so touched by this forum thread, so much so, that I have become motivated to learn more about this condition, which affects me as well.

I've spent the last hour setting up the following website:

http://www.thalassemiaminor.net/

Please visit this page and bookmark it as well. There's only one article on it now (which makes reference to this fantastic thread) but I'd like to do more research and post my findings going forward.

Further, I want to help kickstart a world-wide community of people who suffer from Thalassemia Minor. Perhaps together, we can learn more about this condition and hopefully, find ways to live productively with it.

I hope you all join me at this new site that I just setup.

Thanks!

om26082010

Jul 05, 2011

To: All young thalassemia strugler

Hi!!!
I am a mother of this disease boy. he is so cute and looking good. he was premature baby and admitted in child hospital in incubator on ventilator but i was strongly believed that he will come to me and god return to me my baby OM!!. he was just 11 month baby. but one day his temperature was 103-105 no chance to decrease the temperature doctor test his blood and was shocked its 5.4. then he told me about Thalassemia it is +ve but on minor condition. he is very active now its create just 6 month before so i request every one who have thalassemia please post me ur ideas and precaution to take care of my baby. if u know the right path or special test of it tell me

whitediamonds79

Jul 13, 2011

To: All with Thalassemia trait

Babies with this trait may cry a lot, because they wake up already worn out and remain exhausted throughout the day.  Mines love to be held and fed a lot.  I am also a carrier of the trait, stay physically and emotionally drained.  I have to have an introverted and laid-back lifestyle because even if I sleep for 12 hours, I may feel as if I never went to bed the night before at times.  I do take vitamins and have an iron-loaded diet and still be anemic.

For me, I find it helpful to relax alot as pasttime (reading, tv, computer, music, excersizing, puzzles)  Even housework while giving thoughts to God in prayers throughout the day is peaceful for body and mind.

I too can relate to having dry skin, itchy skin, heart palpitations, crankiness, occassional hunger after meals, needing some sweets at times, postpartum high blood pressure, nausea, side cramps that one member referred to as being "spleen cramps," depression, anxieties, ocd, nervousness.  I can not stand still for more than 5 minutes or else my legs will itch, and from that I have to move them some or walk around.

Danisamp

Jul 13, 2011

To: All

Wow, I am just starting to put the puzzle pieces together. I'm 19 years old and female. I have never had an answer to my symptoms of: constant fatigue, lightheadedness, low blood pressure, anxiety, draining menstrual periods, high stress level, and lack of cardio endurance. The combination of symptoms all started hitting me hard around the age of 13, and led me to eventually drop out of highschool at 16 and get my G.E.D. I could never get up in the morning, and had a hard time making it through each day, which caused me to miss too much school to make up. My mom and I decided it would make more sense to not waste another 2 years + summer/night classes to get my Diploma when I could easily recieve my G.E.D. immediately. I was always being looked at as if I was just kind of "making it up" or exaggerating, and until now I've almost accepted this as normal. Am I'm supposed to live everyday feeling drained and sleepy? Is this how everyone feels, but I'm the only one complaining? In the past few days a lightbulb went off in my head. My mother and her sister are diagnosed with thalassemia minor, which they inherited from their mother. My mother grew up with, and still suffers from many of the same symptoms that I do. There is a possibility that I have Thal Minor too, which would explain EVERYTHING for me. I know that being diagnosed wouldn't lead to any significant changes or treatment, but I would greatly appreciate an explanation for my symptoms after all these years. I have a physical coming up in September with a new doctor and I'm anxious to bring this up at the appointment. Now I need to know.

nicolasl46

Jul 15, 2011

To: nicolasl46

Wow, Its the first time that I hear of people with thalassemia minor having symptoms. I'm 26 years old, male, my thalassemia comes from my mother's side (italian) but I've never had any problems like the ones mentioned here, neither does my mother or younger brother. I gues I should be glad. The only issue that I'm having right now is that my wife is 4 months pregnant, and we just realized that she has sickle cell trait. Th OB/GYN is sending us to a genetic counselor, because apparently these two trits mixed toghether could mean a lot of trouble to the baby. Any body heard anything related to this before?

Rolland55

Jul 28, 2011

To: Thalassemia Minor (TM)

WOW! I had no idea that so many people could relate to the issues I have been facing with my TM. Fatigue, muscle spasms/twitching, sleeping for 10 hours easily, and muscle cramps. I also find I get anxious when I become more symptomatic than normal (i.e. especially when I have pushed myself too hard for too long).

It drives me crazy that TM is not being better researched than it actually is. More information might help TM people better understand how we should pursue our diets, exercise, and mental health.

I agree that taking extra iron can be dangerous and only a specialist should be prescribing this to people. Iron overload is a real and dangerous possibility and should not be considered lightly by anyone taking iron supplements without qualified MEDICAL consultation. I was also warned by an Asian cardiologist who was studying to be a family practicianer that people with TM should not overdue their exercising when there haemoglobin is down. She explained that about 15-20 minutes of strenuous exercise should be my limit. She explained that this is because TM people will likely need to pump greater amounts of blood to meet the oxygen demands of our muscles, and with excessive exercising the heart can actually sustain damage. Ha, I guess in Asia-or maybe with cardiologists-TM is taken a bit more seriously.

Thanks all,

B.

amyA60

Jul 29, 2011

To: Can Beta-Thalassemia Minor have symptoms?

Hi everyone and I am happy to have found this thread. I was begining to think I was the only one fighting with the Thalassemia minor and I am glad to find I am not alone!

I have Thalassemia Minor and have had many health problems as well. I believe most, if not all of my health issues are related to the Thalassemia. I have most of the symptoms you have all listed here, extreme tiredness, etc.

I want to share how I had an idea a few months ago to start treating my Thalassemia Beta in the same way those with Thalassemia Major are treated in relation to diet and iron overload. I began to block the iron in my diet and I think I am starting to feel much better.

I am watching my iron intake and limiting this. I am using calcuim and/or milk products to block the iron in foods I eat at every meal. I am drinking coffee 1x daily to help deplete my system of the extra iron and wow have I had an increase in my energy level.

I am still sensitive to heat and feel a bit faint from it, but it seems better and I am hoping this will improve more as I continue the iron blocking diet.

Since I have started to block iron in my diet iron, I think I am finally getting some results in my energy level.

Has anyone else tried to follow the Thalassemia Major treatment protocol in diet by blocking iron with calcium, dairy products and coffee and noticed they felt better or have more energy?

I was just wondering if anyone else has tried this and what results they had?

Energetic72

Aug 01, 2011

To: ALL

Hello! I too, have Thalassemia Minor and found out in my early teen years. I've been reading posts and can relate to SO many traits/symptoms. Obviously the fatigue, "foggy" feeling, palpitations, shortness of breath, generally tiring before the average person would. I also slept WAY late as a teen, and still require a good bit of sleep (though I'm a night owl and usually get close to 7 hours)...I've been VERY attentive to exercise in my 20's til present, as well as diet (pretty good :-) ) Am a somewhat high strung individual, trouble staying "put", or with much "idle" time...not a couch lounger, napper or anything. Whether it is stubborn or my thinking I'm being "tough"....lol.. I am late 30's now and over the last few years had several symptoms/changes in my health. Since one was noticeably worsened fatigue, it was hard to pinpoint....However, my smart GP decided to run a genetic test this year for hemochromatosis. I have it- a genetic mutation which causes my body to hold onto, or "store" iron. Thankfully it was caught early before any damage to my organs. I receive "phlebotomies" (bloodletting) biweekly for this. My levels are responding and they feel they did catch it early. But with Thalassemia AND hemochromatosis, my hematologist watches numbers carefully...
Guess I'm curious if any other Thallass.patients have been diagnosed with hemochromatosis?? Oftentimes, people won't have symptoms until later in life (30-50) or are being treated for other conditions that the hemoch. has caused (diabetes, heart conditions, arthritis, liver damage/cancer) and unaware they have it!

-"Energetic" :-)

Sceptre1

Aug 03, 2011

To: All

I am a 45 year old male. I found out that I had BTM when I was in college. I was living off campus and was not eating as much as I normally did. I did not know what was wrong so I went to the Campus doctor and she told me that I had BTM. She said the reason I never noticed before was because when I was at home I ate three meals a day or more. But when I stopped eatting on a regular basis and skipping meals thats when I could notice the symptoms. Her advice to me was to eat well balanced meals. I asked about vitamins and she stated that if I ate 3 well balanced meals with healthy snacks I would be fine.

When she told me this about the lack of food I knew she was right because in high school I only ate breakfast one day when I had to take the SAT's and right after I had a football game (I had no time to stop and get something quick to eat, I thought I was going to be alright). I WAS WRONG!!! I was so weak during the game, not like a starving weak or out of energy weak it was just like I was a different person; a weaker, is this all the strength I can muster version of myself. My coach was yelling at me asking me what was wrong; I had no answers until college.

Now that I have children we are finding out that my daughter may have the same condition. Her doctor was doing the same as many other doctors - prescribing iron until I told him of my condition. The doctor at my college had the best advice I ever received it has served me well. 3 well balanced meals with healthy snacks between.

Bestolarides

Aug 06, 2011

To: All with BTM Minor

I am a 63 year old female with BTM. I found out at age 13. I was diagnosed from the University of Chicago.  I was told that I could live a normal life if I would pace myself.  I graduated from college, got married and had 2 children.  The doctors said that I would have to be careful when pregnant and if I ever contract pneumonia.  While pregnant, my blood level went down to 6. I had 2 bone marrow tests and have enough iron to sell. Therefore, I have not taken iron or B12 shots.  They make me worse. The only thing that helps is lots of rest and sleep.  Exercise has always been a challenge for me.  No matter what I do, I can never build up my stamina. Therefore, I catch colds easily.
But I have maintained a job, family, and social life. You can also if you pace yourself.  I still work and plan to do so until 66.  I have traveled all over in Europe, US, Asia.  I now also enjoy my 3 grandsons.
Just remember to tell your doctors that you are a BTM survivor. Try and enjoy the good times and stay positive.  Thank you to all for this forum.
Becky the Greek with BTM.

melvermat83

Aug 07, 2011

My daughter was diagnosed with BT minor in her first year of life. She was tested due to a failure to thrive, she was so tiny until around 4 yrs old. After that she started getting recurring high fevers, around 103, with no other symptoms. These fevers always last about a day and are gone the next. She gets them every few months. The only other symptoms she has is her extreme laziness. She sleeps in every weekend and during the week when she has to get up it is such a hassle. She gets so cranky. Other than these two things, she has never been sick in her life, no flu, no gastro bugs, nothing. She is pretty much, in my opinion, too healthy if there is a such thing. Does anyone else get these recurring fevers?

EstelleDusk

Aug 14, 2011

I was in elementary school (ages 5 through 10 for those that live anywhere but the USA.) After my physical education/gym/P.E. class everyday, I would complain to my coach that my heart was too fast and I was sweating too much. He waved off what I said and said I just needed to get in shape and drink more water and gatorade. Eventually, I told my Dad what was happening. He assumed I just wanted to get out of P.E. and jokingly told my coach to let me sit out. They both had a good laugh about that. But my Dad was a bit worried, so he took me in for some tests, simple blood and heart checks where I was hooked up to a machine.
The doctors said nothing was wrong with me and that I was just being a hypochondriac. They signed a note to appease me and give me a week off from P.E. I became very angry at everyone for not listening to me and decided to just do what I always did and run my laps before I could go hula-hoop in the shade for the rest of the hour. I ran very fast that day, but on my second lap, I collapsed. One of my friends saw me and dragged me under the shade of a tree before he ran and got me his 2 liter bottle of water. Eventually the coach looked up from his paperwork and saw us under the tree.
From that point on, I was allowed to walk my laps. And I'm glad to say that that was my one major fainting spell. Although it still wasn't until recently, after years of trying to prove there was something wrong with me, that I was finally diagnosed.
In fact, I was diagnosed after telling my first and so far only boyfriend that I never wanted to have kids because I was afraid they would turn out like me. Weak, sickly, and ugh.

jojoln

Aug 15, 2011

Hi!
I was diagnosed with thalassemia minor when I was a baby. My mom, her dad, and two of her brothers, and my brother have it. When I was 13 I started getting pain right underneath my knees, especially when I walk too much, or am very stressed. Nothing really seems to help, but it is gone by the next morning usually. I can't complain of tiredness, except when I have my period during which I almost fainted several times. I always managed to lie down and take medicine before it happened. I also have problems running or jogging long distances, or being active for a long period of time.
I have read about thalassemia a lot, and found a website that did say that people with thalassemia can experience problems with joint pain, but there is not much research about this which I think is not right. I didn't go to the doctor for any of my "symptoms" because I know they won't be able to help me much.

Landryd

Aug 16, 2011

To: Beta thalassemia minor

Hi everyone, I'm cookin down here in Florida. I was diagnosed with anemia, or being anemic, about 16 years ago. The doctor told me to take iron supplements, everyday, for now on. One at nite and one in the morning. Well, thats what I did! Last july I had a mild heat stroke and while they were checking me to see the damage, He found the little rbc. I said, I know, I'm anemic. He said no, it's thalassemia and I would be just fine as long as I don't take any iron. I said, do I have a story for you. He told me that it is often misdiagnosed. But he freaked alittle about me taking iron supplements twice a day for the past 16 years and was concered about my spleen and felt it alittle and thats it. I'm gonna be honest and say, on top of the iron, I was a party animal. Lol. My fatigue is severe and my heat intolerance is as severe. I'm a carpenter that works outside in florida. Everyday I come home from work and i have lost as much as 8 pounds, mostly water. I drink 2-3 gal of water at work. I sweat like nobody I ever saw. My ears stop workin around 10 oclock, not completely, muffled, like water in the ear. Is this a symptom of the thalassemia? Iam 43 years old today

process

Aug 17, 2011

To: Qualified doctor

I am posting this question to all qualfied people here.
My friend recently came across a girl and he wants to marry with that girl. The problem is, the girl is thalassamia minor and my friend, he is normal (no sign of any sort of thalassamia desease).

IS THIS MARRIAGE PREFERABLE ?
WHAT ARE ALL THE POSSIBLE CONSEQUENCE IF THEY GET MARRIED ?

rozeto

Aug 18, 2011

I am 30 year old female, diagnosed as a child.

I suffered from severe and constant fatigue and sleepiness. My body required to sleep at least 9 hours a day. I couldn't maintain a steady job for this reason. I almost completely overcame all these by changing my diet. I have increased my hemoglobin by 3 (from 9 to 12) by becoming vegetarian. I used to maintain this level for the years that i avoided meat.

In short I felt dramatic improvement by doing the following:

- Eat a healthy diet (no fast food, no processed food)

- Drink 2 glasses of freshly squeezed juice per day (immediate result)

- Take only natural supplements, such as Spirullina, Probiotics, etc.

- Some light exercises (Pilates is great for this purpose)

- Exchanged beer for wine (white wine with club soda is perfect for the summer, rose for the winter)

- Do whatever it takes to sleep as much as your body required (otherwise the fatigue will take over and destroy your life)

- If possible, get a home maid

I know it sounds a lot of work, since all of us are blamed to be lazy, but as you start, you cannot stop and you will get the more energy you needed to continue. I am leaving a second life.

I also managed to quit smoking (3 packs a day for 15+ years) by reading Allen Carr's book, which I strongly recommend.

rozeto

Aug 18, 2011

Some more advice:

- All painkillers and some antibiotics reduce the life span of your RBC, which makes your situation even worse
- Do not take iron, your body cannot properly dispose it and it gets accumulated to toxic levels.
- Drink water, it battles successfully headaches

spampanato

Aug 24, 2011

no one has really discussed taking b12 for the fatigue. If anyone has info on this please share with me

lilhana

Aug 25, 2011

I'm 23 and have experienced all these symptoms. I have minor thalassemia and always wondered why I bruised easily, was always tired, cold feet and hands, depression and also do had severe scoliosis as Christineindc mentioned. I also have a very weak immune system, so I'm always sick. I have difficulty concentrating these days and always manage to get dizzy spells. I'm glad I have found the reason for all these problems as I can't think of anything else. I guess now I definitely need to increase my vitamin intake. Also sad that I can't even donate blood for people like us who need it.

adityapsingh

Aug 26, 2011

To: ALL

I am a 19 year old iitian BTM.now i realize i wasn't over imagining or feeling things.doctors always say that you are totally healthy .I have tried a lot of experiments changing my mentality everything but its like that you are born to feel tired than others.sometimes if u dont get proper shut eye than mental foginess.its a great pain to see others remaining fresh and u simply wanna sleep.extreme hardwork before an exam and u end up with the doctors.But after all these years learnt to respect my body's limit.My digestion was bad but now i see that cycling 3 kms a day or swimming 3 times a week keeps me in shape.But again seroiusly body building and u end up with fever .My father recomends positive thinking but i guess u have to live it to get it.If you are a hard working guy and have big dreams than i guess BTM is bad, very bad.I even have to eat a lot to just be a bit less than normal size.its like ur metabolism rate is very fast and u practically burn calories without doing anything..i had to give up running sports because u feel blloody tired and sweaty just in 10 minutes than how can u focus on the game wen u r strugling to get ur body going.

bthomas12

Aug 31, 2011

I'm 22 years old and have been positiviely diagnosed with BTM as it runs in my family. Extremely low blood count and iron. I've tried B12 but don't seem to notice a difference.

I've always bruised very easily (which wasn't aided by my love of fencing, I'm sure), felt chronic fatigue, and I am ALWAYS cold. As in 72 degree weather means jeans and sometimes a hoodie.

I'm looking for anything that will help with the cold. The other symptoms I can deal with, but being so cold that I literally shake everywhere I go has to stop. Any suggestions would be greatly appreciated.

Thanks.

truckerswife1996

Sep 01, 2011

I have had TBMINOR all my life. I was first diagnosed with my second childs birth. Most of my family on my fathers side has this disorder, and I have followed research regarding this. Because it was rare, there use to be not much research on this disorder, and now more and more is being done. Symtoms (symptoms) are generally the same with all patients, including in my family, and that is where I started. Another symtom has been, those of us with this disorder have trouble fighting bacterial infections and some viruses. We especially have trouble fighting strep throat infections even with anti-biotics, I usually need about 5000 mg a day to beat it. I too have the dark circles under the eyes and this is common with everyone who has it in my family. Being tired all the time, muscle pain, all that has been mentioned is normal. I myself have been lucky not to have the headaches, I have enough symtoms (symptoms) I do not like, LOL. I would suggest to continue looking up all you can, and making sure your regular doctor knows you are being pro active and make sure you teach him. Remember it is easily misdianosed as a amemia, and most want you on iron which can hurt you. I now take a muliti vitamin with only 10mg of iron. Not much more than I would get in foods. Doctor is going to watch me closely but feels it will not hurt me. I have also taken Vitamin B-12 sublinguel, don't need it in injections, and it does definitely make me feel 100 percent better. Without my vitamins I feel a lot worse and more symtoms (symptoms).

riya968

Sep 04, 2011

All the symptoms mentioned in the forum are very common and can happen to non thal people as well.
Are you guys just connecting it to thal?
It would be great if some thal person who has not experienced any of these symptoms can post here.

MCmnbvgyuio

Sep 09, 2011

To: riya968

read your bit about It would be great if some thal person who has not experienced any of these symptoms can post here. ive been told i have BTM but dont get any of the symptoms mentioned apart from obviously tiredness and sometimes lightheaded.

Kc3712

Sep 10, 2011

To: Lilsm

Yeah, my mom actually once told me she used to have dizzy spells when she was younger. She has thalassemia beta minor. Im 16 and I got my thalassemia from my mom. I have the same kind as her. I don't have dizzy spells like my mom, but I am ALWAYS tired, my feet are always cold, and my pinky is sort of bent looking. At first, I thought my pinky broke when I was born and it healed wrong, but when I read one of the other people on this site said something about bone deformities and now I think that's what it is. I also have trouble focusing on my schoolwork, even my writing, and I love writing my stories! You can say something to me if you want.

Kc3712

Sep 10, 2011

Btw, I just found this site today.

somi992

Sep 29, 2011

To: somi 92

iam 19 , female. today i found that i have beta Thal. minor,, when i first saw the examination paper i couldnt stop crying coz i felt like iam having a dangerous disease but when i saw this site and noticed that too many other people are sufering too. iam a student at the college of dentistry ,, i have so many dreams to make them true i wanna see the day of being a dentidt finally and get marry and have sons ad daughters but now when i found out that i have thal minor i feel hopeless for all my dreams i feel like i cant continue my life or even i cant have my own son and daughter in the future iam afraid if they will be affected by thal. major... i always feel so sick and tired ,,, i really need some one like you guys to talk to and share some thoughts just to feel allitle bit more hopeful like some of you... wish u all have a good health.. :((

somi992

Oct 06, 2011

To: Tia118

i have had the same thing as you ... iam just 19 ,from this early age iam ill like an old person all the time tired out of energy feeling depressed so many times. but now iam a kinna hopeful cuz i finally figured out that itis some thing that we can get over it :) wish u have a good health ^_^

Cherylle1980

Oct 06, 2011

To: Everyone

This is my first time on this website.

I have a five year old daughter that was diagnosed with Thalassemia when she was only six weeks old. I was told that she would be fine, but may require iron as she gets older. She's very thin and when she gets sick it seems to last longer where my other children get over illness rather quickly.

Right now she is battling the flu, as always, it's affecting her worse than a normal child. The only thing I am being told is give her plenty of fluids and rest. Is there anyone on here who has gone through this themselves, or have children currently going through this?

JunJunJun28

Oct 12, 2011

Hello from Greece; a country where thalassemia is regarded as common as salt on food. I've got the trait from my mum and I knew it from birth since thalassemia trait check in Greece is always performed as it's very common.

I find it quite strange that people are this confused about it; maybe cause it's not that commpn in other countries thus they're is no high medical experience other than referal rather than practical.

There are very clear effects of thalassemia trait but they can't be treated as symptoms. These effects include an iron defecency anemia that is also related with folic acid deficiency. The splene size is also increased as it carries much heavier work than a normal person on cleaning the incorectly produced cells. Then the blood diagram appears weak in thr following values: HGB, MCV, MCH and MCHC.

The practical effects of all those are tiredness, difficulty in concentration and sometimes breathing, dizzyness - especially between meals and generally weakness.

The way we live with it here, following medical suggestions, is a diet rich in iron (as the reason of these effects are iron dificiency) and with folic acid supplements (usually 10~30mg per week with a few pauses).

I have lived all my life with it (28 now) and ive just followed my mother's guiding on it - as she lived all her life with it too and so on. I had good and bad days but is smth so standard in this society that never scared me out - in fact we do learn in mid-school biology what it is and all the genetics surrounding it. I also had a couple of girlfriends in my life with the trait and they were just following the same guidelines - sure thing we should never make children. I also have a friend that she actually lives with the full thalassemia major and if u exclude the weekly visits to the hospital she's leading a normal life at tge age of 30 now.

I'm writing all these for people tgat might be scared or afraid about some serious illness or life changes etc. There is no such thing. Get to a specialist and find out how much folic acid you should be getting. Then eat good balanced full meals and make sure to include spinach, beef and so on. Find out if you need any other vitamin too - vitamin C can strenghen u up a lot too. And make sure before u get married/start a famiky that ur parner doesnt have the trait too as ur children has changes to get thalassemia major which is a severe and hard illness to fight.

JunJunJun28

Oct 12, 2011

Continuing from the above post, I can understamd your frustration when some random doctor treats you as normal when you know you aren't. Here in Greece, the first yhing that doctors ask when you're having whatever medical examination is whether you have the trait and it's taken into account very very seriously cause it can lead to misjudgements (for example an elarged splene or lower blood values can be diagnosed as something else when it's a standard in thalassemia trait).

Might as well help to visit a doctor with Greek/Italian decent that are concious about the problem and its effects. Don't be frustrated or feel you're out performed by others. Give your body what it needs - more oxygen. If you're a smoker think how you can get rid of it as it amplifies the effects and intesifies the lack of oxygen. Don't skip water when thirsty. I find a bit of raw salt is a good temporary when ure feeling extremelly dizzy or not fully awaken. Avoid leaving ur stomach completely empty; fill it with whatever u like. All these yogether can keep you strong and healthy. Keep having blood checks once per year to see where ur levels are and take the right measures. There are specific blood checks about folic acid, iron and other thalassemia trait related things. Againake sure to get the right suplements: folic acid and perhaps B12. Im not sure about the Chinese medicine as they seem to target a more generic solution.

curlytotz93

Oct 17, 2011

i was diagnosed with thalassemia minor when i was born but now i'm 18 and over the last 6 months or so i've suffered with fainting and cold hands and feet, i also suffer with depression and itchy legs which some people in my family also suffer with. the women, mainly on my fathers side have all had episodes of passing out. i was once told that you could have your level tested as a percentage, has anyone had this done, or know any relevance as to what symptoms one has. i've just had three weeks at university and now they have asked me to leave because they don't know what to do with me because i'm undiagnosed. i may not be allowed to go back for the rest of this year. i just need some answrs and soon.

san47

Nov 02, 2011

To: beta-Thalassemia Minor have symptoms

I'm so glad I found this forum, I have been looking for a very long time.
I'm having some major fatigue, burning legs and cant breath just to go up my stairs.
My normal count is 11, but i've have dropped down to 8 and really suffering.
I've been diagnosed with RA, Fibromyalgia, and migraines.
I do make spinach shakes and take folic acid.

What more can I do to increase my level.
my dr is waiting for a test to come back, then will send me to either a gastro or blood specialist.

Thanks for listening and any advice would be great

san47

Nov 03, 2011

To: somi 992 post

You can still have a great life and have children. I have two, one has TM.
I say a blood specialist when I was preg and that's the only time I was allowed to take small amount of iron.

You will learn how to live with this, Just don't be to hard on yourself

Mason14454

Nov 06, 2011

Hi. I also have Thalecemia Minor, discovered by an alert cardiologist when I had pericarditis at age 30. Incomplete red blood cells had led other Drs to believe I had internal bleeding, thus 2 weeks of misdiagnosis.

Four of my paternal side male cousins have also been diagnosed sincem as have two of my 3 brothers, but not my sister, although her repeated symptoms of migraines, tiredness etc that are described by so many on this site seem mor TM than I have.

The confusing issue is that I am a fairhaired anglo saxon and have researched my paternal family history back to 1750,but all English by name and birth. Do others have similar ancestry background?

My only real symptoms are irregular tiredness ..I can sleep anywhere any time, but it doesn't seem to effect me during my day much at all. I think I must be in the fortunate group ..thankfully, but still it maybe explains why I am just flat at the end of evry day and just can't do a trip home from work without sleep.

KDill

Nov 09, 2011

To: All

I'm a 21 year old mother and my 8 month old son was just diagnosed with thalassemia minor. I'm still a little confused and I don't know what to expect, we haven't seen the hematologist yet. Can anybody give me any advice on how to handle this with him? It's hard because I don't know what he's feeling!!

kitkat572

Nov 12, 2011

To: all

im a 17 year old teenager and i have thalassemia. I am always very tired, get pain in my joints, light headed from doing simple things, laughing too much for example, headaches everyday and overall weakness. My doctor tested for anemia twice but both came back negative but borderline!
i wish i could get something to help me feel better but i cant as its just thalassemia and its not always easy to deal with.
i was just wondering what everyone suggests, how to best take care of these pains and if going back to the doctor again is a good idea.
thank you!

kitkat572

Nov 12, 2011

To: all

im a 17 year old teenager and i have thalassemia. I am always very tired, get pain in my joints, light headed from doing simple things, laughing too much for example, headaches everyday and overall weakness. My doctor tested for anemia twice but both came back negative but borderline!
i wish i could get something to help me feel better but i cant as its just thalassemia and its not always easy to deal with.
i was just wondering what everyone suggests, how to best take care of these pains and if going back to the doctor again is a good idea.
thank you!

aimes714

Nov 15, 2011

To: BTM community...

wow this is incredible i too am BTM and i have tears in my eyes. i have so many of the same symptoms as everyone. i have enlarged spleen in recent finding of mri after falling down stairs, i hurt back and have bulging disc in lower spine, needed mri in mri they found enlarged spleen. did 4 blood tests and showed that i am defintiely carrier of thalassima which i have known since childhood. i have "the worst" of my other sisters, but all my life i have wondered what this really meant and doctors can never tell me or say there are no symptoms. i have follow up appt this friday with doctor to discuss as my wonderful doctor wants to talk to me . she is great and thank god i have her now.
i have fatique, horrible periords, i love carbs but they make me feel awful and groggy. i feel best on broccoli, salmon, garlic, ginger, egg whites, ... i get bloated often, sometimes i look pregnant and i m not.. because of bloating. i always was athletic but get winded so fast. i was fastest runner of all classmates of 90 kids in 4th grade for 50 yard dash but cannot run a mile without turning bright red and almost falling to exhaustion. i have always been athletic and so frustrated... like i cant be what i want to be athletically .. like something was /is holding me back. now i understand why...
have depression and anxiety symptoms. sometimes cannot get out of bed because i cannot move... too tired. left shoulder pain, low back pain, cramping in abdomen - which are all symptoms of enlarged spleen which is a result of blood diseases like thalassemia. i feel so relieved to have found others with these symptoms... like i am not crazy and not alone!!! i have recently started to study nutrition to try to improve my health and wellness because intuitively i know/knew that there was something wrong either with blood or hormones or both. thank you everyone. please keep sharing your news , symptoms and progress.
warm regards.- aimes

ddwee

Nov 21, 2011

To: BTM community

Hi, I am 38 and live in London. I have a 10 year old daughter. I have beta thalassemia trait, as well as favtor V and Gilbert syndrome.
I am very athletic and I do long distance cycling sportives, I ice climb and rock climb, I swim and have been practising yoga for 7 years.
I experience many of the symptoms that are mentioned in this forum: heavy awful periods, fatigue, elevated heart rate, palpitations, pale face, dark circles, migranes (migraines), etc...But despite all that I have found a way not only to live with BTM, but to live a very active life.

I do have to work so much harder than my climbing and riding partners and despite that, I can never perform liek they do...it is almost as if my body refuses to respond to my training. It frustrates me a lot and I feel disheartened and deflated sometimes, but I keep reminding myself that I am lucky and it could be a lot worse.

I found that yoga has improved my conditions dramatically. Since practising yoga twice a week, my symptoms - especially the fatigue - have reduced dramatically. Sivananda and vinyasa yoga have changed my life. the breathing that we do in class, in synch with the movements exercise the organs as well as the muscles. I feel invigorated, almost as if I have given my internal organs a workout.

I work out 5 days a week and I mix my sessions between cardio work for one hour with yoga. I also ride my road bike and when I do long distances, I wear a heart monotor and do intervals to make sure my heart rate stays below 160. I have learned how to breathe in a way to allow a higher intake of oxygene to my muscles and all these things have made my life so much better.

WhenI was preganant, my blood count dropped to 6 and I would pass out and faint almosy every day. I had blood transfusions and I injected myself with fragmin...My doctors said I could not race bikes or climb mountains. but I do both and have done so for the last 10 years since my daughter's birth.

I just want to share this with you all. I feel for all of you. It is so hard sometimes to have that awful bran fog thing and to feel tired. every person is different so try different things to see how your body reacts to them. Medicine doens't always work in black and white.

I found my salvation is yoga and regular exercise. I also take folic acid once a day and I eat as healthy as I can.

Warmest and best wishes to you all - D

Crystal81510

Nov 23, 2011

I had just learned that my daughter of 15 months old, has been diagnosed with Thalassemia Minor. I've always had problems with my anemia, I have most of the symptoms that all of you are talking about. but I haven't been diagnosed with anything. The doctors just keep me on iron meds and tell me I have low iron that's it. No matter how much iron I take it doesn't change how I feel and how my mood swings don't change for the better. So I'm wondering if I might have this as well. I'm trying to learn about this disease as much as I can. I feel lost right now because I don't know if it'll get worse for my daughter when she get's older. Right now she has no side affects. Although her blood work does show low iron and her hemoglobin is small. I feel bad that she has this and I wonder if it was my fault that she got this because of the lack of knowledge of my own health.

stevedolly76

Nov 23, 2011

I have hypothyroidism and same symptoms. Only i lose weight instead of gaining. Total opposite of the usual. Synthroid made the weight loss worse. Thyroid levels were 24.2 and i believe the norm is 0.04? I have been unmedicated for a while now because there is no alternatjve to the meds. I looked like a drug addict with the weight loss

babygoat1974

Nov 24, 2011

To: ks1979

I also have beta thallasemia minor and epilepsy. Would you mind me asking you a few questions? What is your ethnic background? When was your first seizure? What type of seizures do you have? Are they worse during your menstrual cycle? What medication do you take?

Lovellie

Nov 26, 2011

I am so grateful for finding this site - like many of you, the posts have confirmed a lot of what I've been feeling most of my life. Also, like many of you, I've been told by many doctors that my BTM would not have much of an impact on my life - "If you get tired, just rest." Through my own research, I've learned that I can take a more active role in managing my BTM. My big question is "Where do I start?" Who would you recommend I speak with as a first step? My doctor knows a little about BTM - there must be a specialist out there. Any advice?

santina83

Nov 27, 2011

hi all

im so glad i found this forum its amazing! i have beta thalassemia dignosed back in 1994 im now 28 my mum is italien and im half thats where mine comes from she moved here in the mid 60s as a child
a little back ground info my mum brother and me all have this ever since i was young ive had alot if not all the symptoms u all have yet im forever being told B thal has no symptoms i can never get out of beds in the morning an am know for being ''lazy''' its impossible for me some days even with children thank god my hubby is good dont get me wrong i do lead a good and normal life but i fit it round my symptoms so to speak and no one aprt from my my and brother truely under stand

i was always told NEVER take iron and this is what brings me to this forum im currantly pregnant with my 3rd child tho 4th pregnancy i lost one in feb of this year due to a subchronic heamatoma i bled heroundously for 3 weeks as my miscariage was all natural  my subsquent periods were just as heavy after my dr wanted me to take iron as my hb then was 10 i said no and would see how i go.. she agreed as long as i upped the red meat etc

i saw the consultant about 6 weeks ago who gave me iron tablets to take home she said 1 a day 200mg wasnt going to kill me and i ''needed'' it i took them off with me just to shut her and get out i took 1 and that was it i keep googling it and freaking out about iron over load etc i already suffer with depressin and anxiety like u wouldnt believe and have a fear of death as i heamoraged badly after the birth of my 1st girl 8 years ago i lost 4 pints and they were left with no option but to transfuse so i had 4 pints given.... the NEXT day when they reaslised i couldnt lift my head off the pillow and my hb went down to 4 after the 4 pints it went back to 9.7 and they was happy enuff to let me home

so i had routine bloods done this week now 26+4 weeks pregnant  and my hb is 9 i had an emergency phone call last night at 7pm!!  to say  get on the iron in aneamic blah blah blah i explained i didnt want to take them as was worried etc and he said hes gonna ring the hospital and find out

my argument is what does a pregnancy  consultant know i need to see a proper heamatoligist english doctors just dont know enuff about this to be sending me off with iron saying il be fine?!

u can have a low hb without being iron defient? all my life ive had this and its a battle when it comes to this debate

what has everyone else been told?

im only allowed to labour at my local majour hospital cos of hemroaging risks tho i never did with my son born in 2005 and last time my platelett count was low too

thanks for reading if anyone can shed some lite on the whole iron situation pls doo

mama_kat

Nov 30, 2011

my husband has TM he is 55 yrs. old and we have been married 2 months. I am not sure what I can do to help him with this condition.

ks1979

Dec 01, 2011

To: babygoat1974

babygoat1974, I just checked this site and saw your post:
I also have beta thalasemia minor and epilepsy. Would you mind me asking you a few questions? What is your ethnic background? When was your first seizure? What type of seizures do you have? Are they worse during your menstrual cycle? What medication do you take?

Here are my answers - I am greek..my first seizure occurred Aug 2006, it happened while I was on a fluoroquinolone antibiotic (wish I read about its side effects before taking it). The first seizure I had was grand mal, i have had some in my sleep as well, and do get dizzy spells/auras. For the past 6 months I have kept a calendar marking my periods and when i feel dizzy or if I have a seizure. I do not take any meds, I am trying to get my hormones tested, since my dizziness it seems happens at certain times in the month. I've read that when estrogen is high and progresterone is low can affect...also have read about certain foods to stay away from. So far the neurologists I've seen just want me to start on meds, and I want to find out why this is occurring in the first place. I am not against meds, just want to learn as much as I can.

Can you provide answers to your questions too :) I appreciate all info found here.

Maria1113

Dec 15, 2011

I've known I've had Thalassemia since I was a child (my father and one of my sister's have it, so I was tested as a baby) and have a completely normal life. I'm anemic and tire easily, but I find that when I rest when I'm tired, eat the right foods and take vitamins (sublingual B12 1-3 times a day as needed and a pregnancy multivitamin though I'm not expecting--just the extra nutrients) I stay healthy and active. Also finding productive methods of deal with stress has helped too. Just wanted to lay that out there for all who may have concerns about being diagnosed. You don't need a doctor to listen to your body.

devina364

Dec 22, 2011

To: flomartine73

Please do check yours also,,, if u have

as per the doktor advice, my son has also he was diagnose this week also BT Minor the doktor said not to marry a woman with BT Minor because thier children to be for sure will carry BT MAJOR and that's a serious illness.

Beta Minor is nothing to worry.

camelia863

Dec 30, 2011

To: every body suffering of symptoms as me and you

Hi, (excuse me for the english mistaken)

I has'nt come back on this forum since a year...
I see that there are still so many  carriers of  thalassemia minor that are suffering of symptoms.
Last year I post a message about my blog I created in french about this problem.
I'am living in Belgium and although my blog  french speaking, I tryed to translate my history in European langage.
Happyly is my blog still alive and steeds more people write comments on.

In Europe we try , all french speaking people who are thalassemia minor carriers, to have a official acceptance of our symptoms from doctors.

In Belgium, France, Canada, many people carriers of thalassemia minor have shame of their disease beaucause doctors says that leads to no physical symptoms.
We are  considered as lazy and are critized about that....

I write the address of my blog again :
http://thalassemie.over-blog.net/
Thank you for your forum , I often send people to see that forum and that help hen very much

take care of you,

marshia_h

Jan 03, 2012

I have it too!

*****please read and follow my instructions.
This is the answere to all of your questions:

1- take Fulic Acid at least 1mg daily
2- consider Yoga and Swimming. they give you the flexability you need with out making you tired.
3- add more viggies and fruits to your diet and drink lots of water :)
4- stay posetive. read books that makes you happy. never focus on the word Thalassemia !! and its symptoms. never make it a big deal for yourself !
5- after 3 hour physical work, sit down and relax. drink water and put your head between your legs to let the blood go to your brain. breath and feel good!
6- laugh and be smart and tell you boss, husband, wife and... that you just need some rest sometimes. dont describe too much though. they wont understand.

micaod

Jan 07, 2012

I am 34, and have Thalassemia Minor. I have often wondered how many of us share symptoms and what the extent of them would be. From reading this site it seems most of us have fatigue, higher than normal heart rates, muscle twitches and cramping, migraines, are paler than usual and sleep a lot especially in winter (lately I've considered just hibernating, it works for bears). I used to also have fairly frequent and heavy nose bleeds (sometimes lasting over an hour) so did my father but like he did I seem to have "grown out of them" now.

On the cramping side of things, I used to get very severe cramps in my calf muscles that would render me unable to walk for a day or so until they fully worked out. I am a large man and my legs are very muscular, imagine that muscle trying to compact to the size of a walnut...not comfortable. My wife, who is a nurse, decided that more potassium would hep and so I eat bananas quite frequently. And as long as I have a few a week I find I do not get the cramping in my calves or if I do it is not as severe. Both my sons have lately complained of cramping though so I may have to get them checked. They are 6 and 4.

The fatigue is harder. As a devotee of living history I enjoy fencing and armoured combat. As a result of easily being fatigued though I find I have to either win quickly or play the waiting game, parrying until my opponent makes a mistake. Still, holding up a shield for more than a few minutes in armour it tends to get very heavy very fast, breathing gets interesting too when wearing 50+ pounds of gear after a few minutes of fighting. I do not seem to have the mental fogginess, at least not often. But the physical fatigue is annoying to say the least.

Lisakittie

Jan 10, 2012

To: all my fellow thal M friends

Hi: I am soooo glad to have found this message board. I too was diagnosed with what they told me was "the mediterranean trait (I presume it is thal M) at the age of 14 when hospitalized with a very sever case of mono. Before that, I had episodes of fainting during my childhood (and after that too..during my adolesents and they could never find the cause; one time they admitted me b/c I was said to difficult to awaken, and that my concentration seemed pure), and also as a child I suffered from digestive problems (lots of stomach pain) and easy fatigue. At the age of 15 I was diagnosed with "ulcerative coltis" (but a later gastro told me he thought is was "irritable bowel" which I totally doubt b/c my pain was so severe, they found no infection at the time I was 14 and also they saw signs of "inflmation" which I totally felt happen to me during "flairs"; other symptoms I had as a child was when I used to go to bed to lie down "sometimes" I would feel like the bed was spinning me around and / or shaking and I would see colors..."(seizures???); at age 19 had goiter in my neck and diagnosed with Hashimotos autoimmune hypothyroid, always had cold hands and feet though and still do despite synthroid, at age 20 had a few sever migraines, followed by vomitting, and then soon after was diagnosed with bells palsy (the left side of my face was like parallyzed)...also though childhood and adol..had a LOT of dry skin patches, and was diagnosed with keratosis follicilus (something like that..it was like white goose bumps on my arms), later on..somethings got better and others worse...like the pain in my stomach now seemed to go all the way down my left side to my legs, later was diagnosed with endometriosis (they removed 20 fibroids)..after the fibroids were removed my iron level went up but before that, had ALWAYS been anemic and more so around my very heavy periods.; then also would have (and still do intermitten severe pain in my neck that makes me scream with pain and requires strong muscle relaxers; and also lately was diagnosed with early osterarthritis, and my hands get so swollen (this would always happen on and off) I cannot get my rings off and now hurt and so forth with difficult to extend and close..also diagnosed with carpel tunnel...hand pain and wrist pain..oh yes, and lets not forget that I have been experiencing (recently worsening) eye pain and dificulty opening my eyes in the morning b/c of what I think is inflmmation...and now I also had some miscito bites, which as usual did not heal well (I have easy brusing, poor wound healing, and hyperpigmentaion due to inflmmation) and shortly after that had a mysterious rash which they think might be "atopic dermatitis" but two docs are not sure...the rash is still persisting by responded "pretty" well to prednisone...also, I still get headaches..and my vision seems to be getting worse and more quickly then it should do to the normal "aging process"...I was tested for Angio Edema and also Chronic Gromaloutous, Disease and tested negative for both. Had a negative Lyme test and a negative ANA test more than once..so I think I do not have scleroderma or lupus...so what is this?? I mean, hello...this seems WAY too much not to be related do ya think?? I am soooo tired and sooo disgusted going from specialist to specialist...hemotol, gastro, rheumatol, allergy and immunology, I mean...what the heck? I honestly think that at least "some" of these symptoms have got to be related to the mediterranean trait the doc told me NOT to worry about when I was 14..I just turned 50 and feel like hell....and all this stuff has been going on since childhood and adol when I was supposed to feel healthy and not weak...and is just getting worse now due to age and having it so long I think...oh, and lets not even get into the depression / bi-polar (bi-polar btw I just read a VERY good study that has linked thal M wit b-polar like up to 8% of the people they studied with thal m have it) so...this is VERY discouraging..I mean, honestly I think I have got to have something else too (maybe crohns?? or lyme? that was misdiagnosed or never caught..or some other odd genetic thing maybe..) but honestly I feel sooo sure that at least SOME of it is thal m and I for one feel they have GOT to start talking to us in the medical community and doing some studies on it..TY so much for listing and for being there.

Sunnygirl67

Jan 17, 2012

To: marshia_h

Amen!

Noohew

Jan 18, 2012

To: Scoliosis yes! Also CFIDS & Fibromyalgia

Wow-Reading thru all of this has truly been enlightening! I can't even begin to tell u of my plight, however this Scoliosis thing has really peeked my interest and I genuinely believe there is alot more to that whole thing. This is all very multi dynamic and has so many doors to open yet. Plz write more I am going to check back soon- Thank u to all who have shared etc. You just never know who it might touch or where it may lead. God Bless:) Now I'm off to put on my shirt that says' I'm tired of being tired' and crawling up and (not giving into it, i literally have NO CHOICE) to that never ending need to rest...and lie down...and sleep...that need that
never gets satiated, or is blown 180• out of whack and I'm pacing and fiddling for hours b4 I can hardly stand it, to only go plop once again and wiggle my foot endlessly-until I've wiggled to sleep. The never ending saga of waking up and feel like a Mac truck hit me, and after sleeping 2 days straight...too tired to barely make it to go pee...I again must roll over for more and more and more. Yet I am freaking exhausted permanently to no end. The never ending kind. That should be our new motto. The never ending ones. Talk about redundant, jeepers. Zzzzz over and out! Thanks for reading I do know I'm long winded:)

iaquilino

Jan 21, 2012

To: SADiaz

You feel exactly as I do every day and I thought it was just me. I've known I had Thala Minor since I was a baby because I was very sick until about 6 months old and my childhood diet was a bit different than the rest of the family.
I moved to Sedona AZ 2 yrs ago, and have been sick and getting sicker since a month after getting here. I moved here for the healthy outdoor lifestyle. According to the locals the surrounding mountains are red because of their high iron content which has led me to thinking could that possibly make me sick? I'd love to know about your treatment plan and diet. I've been taking steroids along with 3 other meds for almost 6 months and think that I was misdiagnosed with digestive issues because NOTHING is working. The doctors in AZ seem to have no experience with Thala Minor since it is so uncommon here. My parents are both Italians which is why I have it. I really just long to be healthy again and return to work FT. I hope you will share your findings after returning from the Hemo Specialist. I'm going to try to get and appt with one in my area Monday.

iaquilino

Jan 21, 2012

To: SADiaz

You feel exactly as I do every day and I thought it was just me. I've known I had Thala Minor since I was a baby because I was very sick until about 6 months old and my childhood diet was a bit different than the rest of the family.
I moved to Sedona AZ 2 yrs ago, and have been sick and getting sicker since a month after getting here. I moved here for the healthy outdoor lifestyle. According to the locals the surrounding mountains are red because of their high iron content which has led me to thinking could that possibly make me sick? I'd love to know about your treatment plan and diet. I've been taking steroids along with 3 other meds for almost 6 months and think that I was misdiagnosed with digestive issues because NOTHING is working. The doctors in AZ seem to have no experience with Thala Minor since it is so uncommon here. My parents are both Italians which is why I have it. I really just long to be healthy again and return to work FT. I hope you will share your findings after returning from the Hemo Specialist. I'm going to try to get and appt with one in my area Monday.

jrsygal25

Jan 21, 2012

To: marshia_h

I am only 15 and i have BTM... I got it from my Father, and it is horrible... I can't stand the sun, but I'm always cold. My appendages always swell up, and i can't walk or run for very long time. I am always anxious, and I always have muscle pain... I always thought I was crazy, and all this was in my head. Thank you so much, because your advice was great. I'm a sophmore and have two study halls at different times of the day, so I sit down and relax just like you said. Thank you so much :D

denpais

Jan 30, 2012

To: Chipodzo

Hi

Myself and my 12 year old daughter also have the Trait.......She too is always cold, has pain in knees and ankles, tired ALL the time, complains of tummy pains, dizziness, lightheaded-ness and low-blood pressure. Our GP prescribed her iron medicine which I have now stopped as confirmed by my neurologist and reading on here that we should not be taking Iron as it does more harm than good. I too have had all these symptoms for years as well as chronic headaches (MRI's and various tests done but come back O.K), severe muscle pain in my neck, legs, arms and hands along with tingling in hands, tirednes beyond belief and just a general fluish feeling everyday. I have gotten to the point of feeling like a hypocondriac and am fed up with taking a mixture of painkillers given by doctors that I am now going to try the vitamins recommended on http://www.****.com/index.php?topic=118.0

Jamm72

Jan 31, 2012

To: Everyone

Does anyone with thalassemia have kidney and liver problems too.

Smileybecks

Jan 31, 2012

This is incredible! 277 posts, mostly saying the same thing! isnt it time we were all contacted to run a survey and look into some sort of help for us all?
i'm 38 from UK and are part of a family full of thalasemia, I have been told so many things, That I dont clot if cut (is this true?), that I need iron(I know know only via good diet)!....I was actually injected with iron years ago! there seems to be a lot of ignorance in the health profession with this. I have never been told about a larger spleen-(is this true?)
I am learning to live with this but def. this helps (for me)
Taking folic acid, I was once told that my blood count was low, as the cells constantly break down going through small veins, and therefore folic acid can keep the outer membrane thicker-I do not know if this is true-but it help me. Exercise helps me-pushing more oxygen into my blood seems to help me a lot-its hard doing it when your so tired, but it actually helps (me)
I also suffer from migraines, and I think this must be the reason-the MRI found nothing. PLEASE PLEASE PLEASE someone in research help us!!!

Smileybecks

Jan 31, 2012

This is incredible! 277 posts, mostly saying the same thing! isnt it time we were all contacted to run a survey and look into some sort of help for us all?
i'm 38 from UK and are part of a family full of thalasemia, I have been told so many things, That I dont clot if cut (is this true?), that I need iron(I know know only via good diet)!....I was actually injected with iron years ago! there seems to be a lot of ignorance in the health profession with this. I have never been told about a larger spleen-(is this true?)
I am learning to live with this but def. this helps (for me)
Taking folic acid, I was once told that my blood count was low, as the cells constantly break down going through small veins, and therefore folic acid can keep the outer membrane thicker-I do not know if this is true-but it help me. Exercise helps me-pushing more oxygen into my blood seems to help me a lot-its hard doing it when your so tired, but it actually helps (me)
I also suffer from migraines, and I think this must be the reason-the MRI found nothing. PLEASE PLEASE PLEASE someone in research help us!!!

evelyn2012

Feb 01, 2012

To: santina83

Hello, it is indeed possible to have Thalassemia Minor and iron defeciency at the same time. Ask that your ferritin levels be checked. Mine were down to 2 and it required iron iv's for 6 weeks to increase ferritin levels and Hemoglobin to normal (for me) levels. You should always be cautious about taking iron when you have TM...but use common sense. There are blood tests out there that can tell you if your iron is dangerously low. Women are especailly at risk due to mestruation. Just because you have thal doesn't mean that you can't still need iron. I too was told for years "dont' take iron". Sometimes they are wrong...ask for your ferritin levels and iron saturation levels to be checked....if they are low....face it, you need iron.

GreekMachine

Feb 02, 2012

Everyone is writing how they are always tired. And also someone wrote that they can't run. I am 20 years old and have thalassemia minor. Not only that but I also have a bicuspid valve, which makes running and tiredness even worse. Il tell u guys one thing, STOP SOOKING!! I have all that and I manage to play very high league soccer (right midfield which is most running) and also do weights training and have developed a great looking athletic body. Yeh I feel tired every morning and throughout the day, but energy is superficial, just man up stop being sooky little tired girls and make up that energy. Thalassemia minor is NOTHING so stop making it out to be something so big. Yeh we are disadvantaged and I realize in soccer I have to push myself twice as hard as everyone else, but hey that's life, well for us anyway. So just go out there and do everything better make up all that energy and u will feel much better stop being sad and feeling sorry for yourself you have to just MAN UP! ps participate in physical activity because this will help increase haemeglobin levels and that's where we suffer!

thearu

Feb 03, 2012

To: medhelp

I am also like other Thalassemia trait and found that during first pregnancy (had pre-enclampsia) and both children delivery c-section. Always had fatigue, have developed dark eye circles, have anxieties, muscle and nerve pains. Need lot of rest to recuperate on weekly basis.

I urge that a proper study be done using the above provided details and interactions with all of us - so the common issues are taken up for proper medical research. The campaigns to sensitise Governments and corporates so that employees (even students) with such condition are given better treatments (have better rights).

Medhelp should get in touch with few research/ survey organisations and infrom them about lack of information and the opportunity for medical business in this area for them to seriuosly study this. Everyday, people like us are waiting for some such research, medical developments and sensitivities to be developed for our better & informed health and care.

Huda841

Feb 03, 2012

To: wygvn

I do

yhchong367

Feb 08, 2012

To: medihelp

I have the sympthons of BTM too.

When I was a teenager, I had cold hands and feet though I lived in a tropical country. I remembered I was stopped by a school teacher from competing in a school race after my first round of 100 meter run. My face turned dark after exposing to the sun for a short while.

Only 5 years ago, after having a medical check-up which shows that my blood cell is relatively smaller and lack of oxygen, then only I realised that I have BTM even my both parents are of Chinese origin. I find tea is good for me to reduce my fatigue and tiredness.

iszu

Feb 08, 2012

To: chadhlfg

im italian back ground and have btm also my daughter has btm.
And yes im very angry that doctors and people who don't understand it give you crap about it. its like having add and chronic fatigue all in the same week. headaches and bloating is another, food allagies mostly wheat and dairy, avoid achol coffe and to much sugar.Have lots of fruit and veg and try soy and legum fish and lean meat and chicken. walking is a better form of exercise as swiming because if your lungs get more oxgyen then your stamina will increase as well. i have been doing this and it hepls mantain my engery a lot longer. good luck guys.:]

1summerspring

Feb 17, 2012

To: medhelp

I'm a 46 y/o woman w/Thal B trait (brother had major):About me: I fainted a lot when I was a kid, unusually low energy, sallow appearance and dark circles, depression (due to low energy), no thirst-get dehydrated, heavy periods, low exercise tolerance. I've just lived with it knowing my limits. Now one of my children has same symptoms+asthma--where to go and what to do for him??? No one ever gave me answers-just told me thal minors do not have symptoms but I clearly do. I keep taking him to doc for feeling lousy and looking very pale-low energy-always catching someting but with no real diagnosis. His pediatrician recently said I have thal minor and I don't have any symptoms (even though she looked grey to me) and she told me to get my child checked out by psych for depression. I'm really frustrated now. If my child wasn't feeling so tired and didn't get sick so often, he wouldn't be "depressed" Does anyone know what tests to get for him and where to go in Phila area? I really need the right kind of help NOW.

manneater

Feb 20, 2012

Wow!!!! Here I'm lookin at Chronic Fatigue Syndrome, cus it fits my symptoms, say something on FB about it, my cousin tells me he has thalassimia, so I look here and ill be going to my doctor telling her to check for this. I'm 28, I have heart palpatations everyday out of the blue, for years, ALWAYS tired, no matter how long I've slept. My eyes get sore, I can't bend my head backwards for more that 5 seconds without getting extremely dizzy, I've dealt with sever depression, and anxiety, to the point of agoraphobia, my hands and feet are always freezing, I get headaches, joint aches, chest pain (muscular), and guess who has severe scoliosis!!!! And when my little girl was about 8 months old, she went in for a week for having anemia, dear lord we thought she had lukemia. She has slept through the night since a month old, can sleep for 13 hours and still nap that day. Hmmmm I wonder if maybe...... Were going for check ups tomorrow, thanks guys <3

Azsoccermomof5

Feb 21, 2012

To: 1summerspring

Hi just wondering if you ever got an answer? My daughter was just diagnosed and she is tired all the time and of course they said there is no symptoms. I hope you have been able to get some answers and if you could just share some of your experiences with me.

Azsoccermomof5

Feb 21, 2012

To: Rolland55

Wow this gives me hope for my child. I see her not being the same kid she was and hope to find someone who can help her. I am thrilled you posted this. Thank you very much

Mako482

Feb 25, 2012

To: GreekMachine

Greekmachine, you are showing your age. Tell you what you 20 year old little punk, I was your age and in the US Army for 4 years and served in the Gulf War. You dare to insult me and others on this board you don't even know a little girl because we are having symptoms? Grow up child, you have a lot of it to do.

Mako482

Feb 25, 2012

To: Mako482

I typo'd my sentence....meant insult us by calling us little girls...must be my brainfog. Go figure.

bernie7812

Feb 25, 2012

To: Everyone

Does anyone know if this condition has a remission cycle? I have experienced the same symptoms as everyone who had posted here. I have been told that I have fibromyalgia, But it comes and goes. I always have some degree of exhaustion. I also have times when I feel really great and have all the energy I could every want.
Also, please let me know if any of you have sickle cell trait as well.

Elenakai

Feb 26, 2012

To: evelyn2012

Thank you for your post. And In advance I want to thank you for taking the time to read through my post and help me understand thalassemia and it's implications. I truly appreciate your time, and anyone else's who can respond.

Forgive me if it takes me awhile to get to the pertinent questions.
I have a rather strange situation. Last year I went to the ER for an attack I had from taking some digestive enzymes (I have no idea if that was related to thalassemia). Anyway, after some tests were run the doctor casually asked me if I knew I had the thalassemia trait. I told him I had never heard of it. He then told me very casually that it probably had to do with my Mediterranean background and was nothing to worry about at all, basically it was nothing. So, I never gave it another thought. I have never been able to figure out why I have had extremely severe vomiting, and diarrhea from taking digestive enzymes.

Anyway, that is how I found out I have some kind of thalassemia, but I don't know exactly what type. However, I have been diagnosed with Mixed Connective Tissue Disease (MCTD), which is an autoimmune disease. This diagnosis came after years and years of trying to find out why I was always so tired, felt so awful all the time,along with a host of other symptoms (ones continually mentioned on this forum). Now they tell me I also have Fibromyalgia. It's strange though because once when I had a routine physical they told me I didn't show any signs of MCTD, and this was years after I had been diagnosed with the disease. I have been so exhausted with the constant run around from doctors I've just sort of accepted the fact that I'm ill from something, but may never know exactly what, and don't even bother going to the doctor any more.

Well, I still do a lot of my own research and recently remembered what the ER doctor had said and started doing some investigating. That's when I found this site. I cried reading through it.

Finally, here's my question for you or anyone who reads this; without having known anything about Thalassemia, and what it has to do with iron, I had started taking some supplements and found that iron was one that really did help me feel better. And, it's definitely the iron because whenever my tiredness gets completely debilitating I take iron and in a few days I feel better...not great, but better. Now I see that maybe I shouldn't take it, but if I'm low on iron what should I do? I don't think I've ever tested positive for low iron, although I have had an iron test done multiple times because the dr.'s suspected my symptoms might be anemia. Although, several years ago I had to have an emergency blood transfusion because my blood count became really low. The only way I even found out that it was critically low was because I became really tired and my heart was palpitating unusually. The doctors never agreed about what caused the problem because the only thing they could find was hemorrhoids. Go figure.

Now I'm really wondering if most if not all my problems are due to this thalassemia "trait". What tests would I need done to find out? Can I be anemic even though my iron levels look normal on tests? Why wouldn't my blood tests indicate that I have low iron? And, what is the best iron to take even if my blood tests are negative for low iron? You are probably not a doctor, but I really need some guidance. My life has literally become one moment by moment existence. My tiredness, body pain, mental fog, all of it has become debilitating. I can't work any longer, and I barely have any activity at all. I'm sick of the doctors who can never really tell me why I feel so retched all the time. And it's only getting worse as I age, even though over the years I have changed my diet, started juicing, taking supplements, anything I know to feel better.
Thank you for taking an interest and helping me navigate getting some answers and the right help.
Elena

deltapetal

Feb 27, 2012

To: paulabenoit

Thats so horrible and sad that your hubby doesnt understand, if he loved you he would read this forum and get up to date and show interest. My hubby found this site for me as I have been diagnosed and suffering from all the symptoms for 18yrs and 10 of those we have been together!!

deltapetal

Feb 27, 2012

To: Cerisano

Was wondering did you get an answer for the sugar levels as i was diagnosed with syndrome X which is something to do with not consuming any sugar and not eating certain types of food which the list was as long as my arm!! I was diagnosed with tM when i was 18 and have had a lot of symptoms that they have labelled as they dont know why. I have been labelled syndrome x, chronic fatigue, fibromyalgia. Interested to see if TM effects blood sugar levels.

deltapetal

Feb 27, 2012

To: somi992

I was diagnosed at 18 i am now 33 with husband and 2 healthy children who dont have TBM but before you commit to husband get him tested as 2 TBM people cant have children. You just need to take each day as it comes and rest when you need and have a good support network for when you feel like you cant cope anymore. Good luck and I am always here if you need someone to talk to :) Kyh

juday76

Feb 29, 2012

hi!i'm judy from the philippines.i was diagnosed to have thalassemia minor 4 yrs ago.i got pregnant wth my 3rd child and found out to have low hemoglobin level.so i had blood transfusion and after birth i had been symptomatic.i had dizziness, palpitations which made me so afraid and even had some mild chest pains and headache.went to cardiologist and thought it was a heart problem but ecg was normal.had my blood work up and find out to have thalassemia minor in an electrophoresis.doctor gave me folic acid vit e and b12 to be taken for life! i never skip taking my vit..condition improves only sometimes had some dizziness and fatigue though doctor said its part of it.exercise lots of water,fruits and veg helps a lot!plus positive outlook for life and faith in God!hope everybody would feel better and never give up!all the best and God bless us all!

juday76

Feb 29, 2012

To: Elenakai

well i guess elena you should go to a hematologist for testing if you are really thalassemic...then undergo a general check up as well so it would be better to track each system that needs to be check.i think that would have the right result and that would point out which should be treated ...and lastly chillax don't stress yourself try to live the normal way i've been through it and it would help a lot if you try to relax and give yourself a break until the right diagnosis come out... goodluck and all the best!God bless you!

edalim

Mar 02, 2012

To: thalassämie

Hallo,

bin 38 jahre alt und habe auch anfang 30 erfahren,dass ich an thalassamie erkrankt bin.mein arzt wollte irgendwann mal diesen test durchführen und wie die anderen krannkheiten kam auch das dazu.habe noch schilddrüsenunterfunktion, eiweißausscheidung,an der grenze diabetes typ 2 und vor eiigen jahren sehr starke migrän anfälle wobei mittlerweile ich gar keine migräne mehr habe.deshalb schreibe ich auch.ich wusste nicht wie es möglich war einfach so keine migräne mehr zu haben, als ich irgendwann mal im internet gelesen habe das magnesium bei manchen menschen helfen war mir klar wieso es weg war,weil ich seit einigen jahren jeden tag magnesium 300 kapseln von biolektra nehme.ich habe damit angefangen, weil ich nachts bein krämpfe hatte aber sehr schlimme. ich habe seitdem weder krämpfe noch migräne.im jahr vielleicht 2-3 mal. probiert es aus aber die hochdosierte ist auch sehr gut für den herzen. alles gute für euch alle ich weiß wie schwer es ist manchmal andere leute klar zu machen das man sich so krank und müde fühlt.

eva135

Mar 05, 2012

To: everyone

Hello I found out around year 2000 I had Thalassemia when the my doctor called me about a blood test . The doctor thought I was hemorrhaging and wanted me to go to the emergency room . I called my father and he then told me I might have Thalassemia minor not internal bleeding. But as a child I do remember my mother said my lips would turn blue and I would pass out a lot. I'm very athletic and throughout my life have felt somewhat tired but not until I turned 50 I started really feeling fatigued with migraines. I was also diagnosed with adrenal fatigue too I had to take a lot of vitamin C, B-complex vitamin, and adrenal bovine. This helped me out a lot. Thank you for all your comments. All of your suggestions to use Folic -acid and refrain from iron has been helpful. I too am part Mediterranean or Greek descent. It is very frustrating that the medical field has not researched BTM. I will be going to a physician who claim he has done a lot research on BTM . I will post again if I receive some helpful advice that will benefit everyone.

dannib721

Mar 16, 2012

To: Elenakai

Hi,
I have know about my thalassemia since I was a teenager, and for the most part it has never really bothered me, I am 39.  There has been some fatigue, cold hand and feet, irritability, and dark circles under my eyes.  I dabbled into vegetarianism and found that it didn't work for me,   This all change about two years ago when my fatigue was so extreme that I was sleeping for 14 hours a day, basically I got up, went to work, came home to bed.  After a little persuasion my doctor ran a vitamin D test, along with the regular CBCs and found that my vitamin D levels were really low.  The doctor started me on 6000 mg of Vit D.  I am subsequently on 3000-4000 mg of Vit D. The vitamin D helped alot. I live in Canada and our winters don't allow for much sun exposure.  Most recently I also found out that I am allergic to dairy, including whey and casein.  I have completely eliminated dairy from my diet and have found the mental fogginess has gone away.  When I do experience it, it is usually my body's way of tell me to that I probably need a protein from meat.
What has really helped and works best for me is
a. a diet of fruits, vegetable and lean protein, even occasional red meat.
b. I try organic as much as possible to limit exposure to pesticides and other chemicals
c. I have cut out refined sugars and processed grains, agave nectar is a great substitute
d. I supplement with vitamin D, folic acid, calcium and magnesium (because of the lack of dairy), CoQ10 and the full spectrum of Vitamin D
e. I don't take iron as my ferritin levels are normal
f.  I do yoga, anywhere from 5 to 6 classes a week, (Ashtanga, Hatha and restorative)
Overall, I feel better now then I have in a long while.

You have to be your own advocate, some of your symptoms may be related to the Thalessemai, however there could be underlying conditions that exasperate the symptoms.
a. Do a full blood work up, including vitamin D,
b. Look into any food allergies,
c. Change your diet (this is really important)
c. Include some form of exercise, even if you are tired -

Good luck

valsalva

Mar 20, 2012

To: Wall

I am a 29 year old male, I have beta thelassemia minor! I have always been told by my mother that there isn't much reason to be concerned and therefore have ignored the blood disorder. I believe that most of the symptoms mentioned, low energy, feeling tired, sore joints, cold feet, heart murmurs, difficult sleep patters may be common for people in general, I cannot say I've experience all of these symptoms regularly. As a teenager, I played basketball often and when conitioned my energy was good. I stil play sports regularly and work out, without findng myself any worse off than others. It may be possible, that a majority of people out there are just lazy? Countless numbers of people experience fatigue and don't have BTM, they just don't excercise. In my family, my mom, and 3 sisters also hve BTM, and they all appear to be fine.
On a different note, my wife and I have three boys. The oldest of my boys and youngest both have BTM. The middle does not. Ill be interested to see how they do growing up.

Sony99

Mar 25, 2012

To: BETA THALASSEMIA

i'm 40, just got diagnosed recently. Had been having the symptoms all these years and felt as if this is 'just me', I'm different. Ignorance was bliss ! Now that I know, I've decided not to worry....40 went without knowing and the next forty can go without worry. No one has perfect health. At lease I dont have a life threatenning disease. Also most illesses are to do with our attitude to life. Staying postive amidst all adversity is the best answer to all life's problems. Yes its easier said than done. But we all learnt to brush our teeth from a young age which is why, we have most of our teeth intact, right. It never too late to practice, staying postive and not worrying. Life is not perfect for anyone. We just dont count our blessings and miss the parts of perfection that each and everyone of us has ! Smile people, life is not all that bad....

DevilDocrn

Mar 27, 2012

I played sports as a child and was always teased because I tired quickly. In high school I wrestled and was always called lazy because I lost matches if I did not win in the first minute. In high school I was 5'11, 195 pounds with a 48 inch chest and a 35 inch waiste and could bench press well over 350 pounds. It just didn't make sense why I was so tired after a few minutes. Later I went into the military and had the hardest time with boot camp. I still could not figure out my fatigue issue and searted to believe that I was lazy. A few years ago I was diagnosed with beta thalesemia and finally felt a little better about my psyche. The hematologist that diagnosed me told me it has no bearing on my physical capability. What a load of crap. I think that there needs to be more research done and more thought put into treat ment.

DevilDocrn

Mar 27, 2012

To: Mako482

Kind of sounds like "Greekmachine" does NOT have it.

Lilabette

Mar 29, 2012

To: Mason14454

I am English too. My mother says it comes from the Roman invasion.

alissa521

Apr 05, 2012

I just got diagonosed with TM and I am 45 years old! This explains so much! Fatigue, out of breath, headaches, fogginess. sigh!

FBDriven

Apr 06, 2012

To: mzlady404

I was told by a doctor I have beta thalassemia but that it was nothing to worry about because it was the minor kind. I am a 39 year old male. I have always been athletic. I played sports my whole life. I wasn't overweight. I could run fast but would get out of breath when attempting to run long distances. I tried to build up my endurance by walking & running on a treadmill everyday at least 3 miles and after 7-8 years of doing that everyday still couldn't run more than maybe a mile at a time. After reading these posts of other people who have this, I am realizing that it's probably because of the beta thalassemia.

Orvampire

Apr 14, 2012

To: ks1979

Hi first time seeing this forum-I have thalassemia with lots of muscle and joint pains--about five years ago after a serious head on collision--all four of my limbs were broken and it took about three days to figure out I was in the hospital even though I was conscious--anyway I was also was diagnosed afterwards with Pancitopenia which means I am low on all blood cells--my count has stayed at 10 for over five years now ever since the car wreck before it stayed at 12 with one recorded dip of ten--as I grew up I felt good until about 22 then started having tiredness, joint pains and very sore muscles--I have no advice to offer but stretch before, during exercise and after it helps a bit. I was always was told thalassemia was no big deal, uh not quite apparently after reading these other comments. Hang in there.

Orvampire

Apr 14, 2012

To: bargaingirl

that is an easy one to get checked out and I would at least you'll know--I have it

chadhlfg

Apr 16, 2012

To: BTM and Sports

This is my third post. I wanted to let you all know how I have been managing my BTM.

I'm sharing this information with the Board because it took me years of trial and error to figure it out.

Whenever anyone does vigorous exercises their hemoglobin will drop. Professional cyclists have long been accused of storing their own blood before the Tour De France and then giving themselves a blood transfusion during the race to bring their Hemoglobin levels back up. A normal Athlete is probably starting the race with a Hemoglobin of 17 and then after many days in a row of vigorous exercises their Hemoglobin may drop to 12 or 13 then they give themselves a blood transfusion of their own stored blood and they are back up to 17.

An athlete with BTM such as myself is starting with a Hemoglobin of 13 which is high for me. After doing some hard cycling events locally (nothing even close to being as difficult as just one day of the Tour De France) but hard for me none the less. My Hemoglobin will drop, and when your starting at 13 it's not that hard to get dangerously low Hemoglobin levels very quickly.

In years past I didn't understand how my Beta Thalassimia affected my training and I would just keep pushing myself, until I would eventually pass out or wind up in the Hospital with very low Hemoglobin levels.

Last year for the first time I was able to purchase a Home Hemoglobin test kit, here is the link. It's called the Stabino Stat Site Mhgb.

http://www.medicalresources.com/shopping/proddisplay.asp?catalogid=8801

I use this monitor weekly with just a finger ***** during hard training to see exactly where my hemoglobin levels are, and when they drop below 10.5, I know I have to back off and give myself more recovery time.

The main effect of low Hemoglobin for Athletes besides the fatigue and tiredness is that your recovery slows down.

Aquatica

Apr 17, 2012

To: Stephanie0515

Hi Stephanie, I had the exact same brain fog for years! I couldn't drive and always felt fatigued.

I also have Thalassemia Minor and had been taken iron tablets everyday for a few years. The 'fog' never went away. I got some tests and nothing came up. The doc (different one to the one who had told me to take the iron tablets everyday) told me to stop taking them as I was overloading on them. She was shocked to hear I'd been taking them for so long.

I stopped taking the tablets and started taking a good womens multivitamin, and guess what?! The brain fog is gone!

Temari_Kage

Apr 18, 2012

To: flomartine73

Hi everyone,

I'm gonna be brief, because I really should be sleeping (alarm goes off in 2,5hrs ;)). But I was reading up on TM, since it's been bothering me more lately and especially to night (since I was lying awake thinking about it) and found this site/forum...
I live in Holland and I've never met anyone whith this desease. Doctors havn't been able to tell me much and getting the right diagnosis - and _finally_ getting the right tests done to get the diagnosis - was such a battle, you won't believe it. I'm 26, been sick up until 3 years ago when I finally practically forced my doctor to run that simple little test... Been pretty much fine since, up until a few weeks ago.
I was reading all (well, not all, there's quite a few ;)) of your posts, and i found myself just litterally sobbing. O.m.G. Thanks all for sharing.
Temari

Temari_Kage

Apr 18, 2012

To: Aquatica

I'm guessing that's prob because there's a lot of folic acid in there, which is important to create blood cells?

Venevil

Apr 19, 2012

To: melvermat83

Hi!
I'm a mother of a 4, and my 8 year old has thallasemia. I can relate to what melvermat83 says about the kid being "too healty". While she has not been home sick from school more than 2 - 3 times the last 3 years. She does not get what ever the other kids get. But she does get the mind-fog, neck and back pain, and she is very tiny. She is very active, and do not sleep more then the other kids. What I feel is heartbreaking is her lack of consentration. She is so intelligent, and doing good in school. But it takes us all afternoon and evening to get through the homework.

Temari_Kage

Apr 20, 2012

To: Venevil

Hi! Lack of concentration can be caused by an iron deficiency. You should never take more iron than you need (when you have tallasemia), but too little of course isn't good either. I calculate my intake regularly (by now I pretty much know without calculating), you can use the online cronometer, for example. When what I ate didn't make for enough iron, I supplement it (I buy tablets that contain a small dosage). And ofcourse I take the folate. Since I started doing that, I only get sick once a year (as opposed to every three weeks) and I feel much, much stronger and more focused.
Maybe with your child there are also other vitamins involved, or maybe the lack of concentration is caused by something else? What do your doctors think?

dawnsantina

Apr 26, 2012

To: Can Beta-Thalassemia Minor have symptoms?

I have beta-thala-minor.  i have suffered with weakness my whole life.  To top it off, I also have celiac disease, an auto immune disease that attacks the lining of my small intestine when I eat grain.  It was the great ah-ha moment when I found out that italian looking me, with the italian blood trait, can't even eat italian food... ha!
Anyway, I always get run down very easily.  I can't tell you how many times people have thought I was nervous because my hands shake, when it really stems out of being weak. When I was a kid, I was very frail, I had nose bleeds, and sometimes at night I would stop breathing all together due to low oxygen.  Not the best symptom to have if you want to live... lol!   I have been overdosed with iron, by good intentioned doctors trying to correct my blood, until the day came when I was finally diagnosed.  My Mom, my Grandma, my cousin... we all understood once my diagnoses came through.
The thing is, if I do nothing, take no iron at all, then you might as well scrape me off the floor.  I become so exhausted.  If I take iron, it's usually a much higher dose than the body can use and although I feel better for a while, I start to feel that overdose feeling again.  I have gotten some chewables where I can bite off a piece an not overdose.
I am now taking a new product on the market, it's called spatone pur-absorb iron.  It's liquid packets, filled with spring water high in iron, from a water spring in England.  You can taste the metal in the water.  It has only 5mg. of iron per serving.  It has made me feel more solid and strong.  Although I don't plan to take it every day, it's enough to snap my body out of it's weakened natural state of anemic-ness.  I have found, along with my other family members, that NO iron, or red meat, is not the answer.   I may not be a medical expert, but I am an expert at living in a body with thallesemia-minor WITH symptoms, I might add.  This is a gentle way to get iron, not too much, that can help with the symptoms that we live with.  Just thought I'd put this out there for anyone looking for a gentle iron to add to their health regiment a couple times a week.  You might be pleasantly surprised!
Bessings to you all!  :o)

Milan0408

Apr 29, 2012

Im happy I found this discussion.
I have always known i have have BTM . Im 30 now and I have all the symptoms that you all describe.
I experience extreme fatigue, dizziness, foggy mind, weakness in my knees and numbness.
All Doctors say that there should be no symptoms, there really needs to be more research done on this.
I did find that with a proper diet and light excersise does help decrease the symptoms.
I am just wondering, At any point can a Minor become a Major?

Thanks

Temari_Kage

Apr 30, 2012

To: Milan0408

Hi! I don't believe you can become a major when you're a minor, because it's a matter of genetics. Minors only have one 'mutated' gene, majors two. But a minor can be in need of a blood transfusion, for instance (I came pretty close myself, due to poor medical expertise on my doctors sides and I saw that several people n this thread have had it), which is typical treatment for majors.
I hate it when they say "There should be no symptoms", obviously there are many people with TM who do have many symptoms and whose lives are influenced by that in ways that are not trivial.
I take good care of my diet as well, I find that it helps alot. Someone with TM wrote about TM and exercise, though it's not scientific: http://www.thalassemiaminor.net/cardiovascular-health-why-it-matters-more-for-people-with-thalassemia-minor.htm

@ Dawnsantina: Sounds interesting, I'm gonna look it up :)

I've got a question myself:
how much iron intake is advised for people with TM? The same or less for people who don't have TM? I can't function if I don't take a little more than the daily recc. amount. I'm thinking maybe it's also got to do with how much someones body can take in, or what source the iron is from. What do you know about this?

lornabuns737

May 03, 2012

To: All BTM sufferers

I am a 54 year old female of Hispanic origin and was diagnosed with a "Mediterranean strain" of Beta Thalassemia Minor at the age of 38 (1996).  My entire life I was weak, easily fatigued and lethargic.  Sometimes my body muscles and joints ached and I didn't know why.  I was very pale and thin, always cold especially my hands and feet.  Many times I could not think straight.  Growing up I was teased constantly, called "toothpick", because I was thin, my relatives commented all the time about my laziness and I had headaches almost every day wihen I was a teenager.

When I was young and having mentrual periods, it was very difficult to  get out of bed on a daily basis.  I was a single mother and had to work,  I was a civil service employee for 25 years and worked in the private sector for a total of 9 years. Believe the only reason I wasn't fired was sheer luck and the Grace of God.  But I had to deal with daily bouts of fatigue (to the point of nodding out at my desk).  I also continue to have migraine headaches:  I wake up with these headaches, unable to lift my head off the pillow because they are so painful.  Still can't figure out what's happening that is causing them.  But I have to stay in bed and (believe it or not), sleep it off.  The next day I'm usually fine.  I also get headaches when I am out in the sun doing yardwork for too long, so now I recognize the signs and get out of the sun and in the house.

It was a battle every day to deal with this ailment.  Depression was a huge factor.  I felt no one understood me and/or this disease.  It's even true today and I thank God I have made it this far on my own. When I was young of course I behaved like a young person, I party'd too much and didn't eat right.  It would often take the rest of the weekend, practically total bedrest to recuperate enough to get to work on Monday.

I have not worked since 2009 and no longer have insurance so I take extra care.  I no longer drink alcohol and eat a well balanced diet.  I make an effort to keep my weight down (I am not skinny anymore). I also have cravings for spinach straight from the can, dairy foods, and chocolate. Luckily I don't like red meat and eat mostly chicken, lean pork, fish or seafood.  I ride my bike or walk, do yardwork or briskly clean my house to stay active.  I never overdo it, pacing myself and take breaks often now that I am older.

I no longer have periods, and that has lessened my bouts of fatigue and tiredness.  Because I don't work, I do have the luxury of being able to remain in bed on those days when I wake with an extreme migraine or feel too exhausted to get out of bed.  Usually one day of bedrest is all I need and I am back to my old self.

I believe there are different degrees of BTM, even though we are classified minor, as opposed to major or trait.  I think that even with the minor classification, they are varying degrees of symptoms. Some may feel only tired once a week while others are very tired everyday. Some may experience slight headaches occasionally, while others have severe migraine headaches several days a week.

My only advice is, once diagnosed, listen to your body, be aware of how it behaves when exposed to exercise, changes in diet, the outside environment and respond with what feels right for you, what makes you feel better.  Then share that information, it may help someone else.

Didn't have the internet when I was young.  I was the only person I knew that had this malady!

Mrs_Gulley

May 03, 2012

To: All BTM sufferers.

My 3 1/2 year old was just diagnosed with this and I am so frustrated that his Hemotologist told me there is nothing to do except watch his iron intake. My son is so fatigued and they say its because of the anemia yet he's not iron deficient so he can't take iron pills and B12 injections arent recommended in children. He recently played TBall and it was like a struggle for him. If anyone could please just give me any kinf of advise I would greatly appreciate it as currently I am getting nada from his doctors.

Sincerely,
A concerned and frustrated mother

clahbooom

May 05, 2012

Hello everyone. I'm a 22 year old female from the Philippines and was diagnosed with Beta Thalassemia a few weeks ago. I'm so thankful that I found this site while I'm searching everything I need to know about BTM. I'm suffering some of the symptoms most of you guys have also experienced, like chronic fatigue, cold feet, palpitations, muscle spasms and twitches and painful periods. Moreover I also experience numbness in the extremities and mild anemia.

Good thing I've learned is that proper nutrition and healthy lifestyle is the only way to manage BT. Why I've become a dietitian pretty makes sense now. Unfortunately, I lost my chance of being hired at the hospital because I was diagnosed with it during my pre-employment medical exam :(

Hope you guys stay fit and healthy! God bless us all.

JustABetaMommy

May 09, 2012

I just found this community. My youngest daughter was diagnosed with Beta Thal Minor - I was told "No big deal, don't worry... etc." She has dark circles, tires easily - from not doing much might I add. And this morning she woke up bent @ the waist (an hour early) crying and she could NOT stand straigt! I brought her to her Aunt's house for the day but I was curious as to what coulod bring this on in an 9 year old?!

mauimurse

May 10, 2012

To: Christineindc

Hi christine,

All these posts from people that have thallessemia minor sound so familiar. I know how everyone feels. im 30 now and first found out I had T minor when i was 27. All my life i lived tired, people think im just a mellow person but im tired most of the time. I have struggled w mild deppression and still do occassionly but im usually happy when im active and around good people. I used to come home from school exhausted and all i wanted to do was nap. Even when i took naps i was fatigued and when i wanted to do something fun i was tired. I think thats why i love movies because it doesnt burn up too much energy lol. Any ways im blessed to be living because there are people worste off than me so i cant complain. im in great shape today, play basketball, run, eat right. Getting folic acid and occasional meats like fish and beef helps my energy level. Staying positive and fighting fatigue helps. I believe i can maintain the fatigue today by living healthier and happier and just accepting i have T minor:) hope my posts gives some inspiration to those that do struggle with it every day. I love you all and know how you all feel! Lets fight fatigue together with energy we create for ourselves! A good laugh with people always gets my energy level up by circulating my blood and feel good chemicals! Aloha and God bless!

adac202

May 11, 2012

Thank you all so much! Reading these post really helped me a lot. You really feel alone sometimes but it's great to know you're not alone. Thanks

deltapetal

May 13, 2012

To: chadhlfg

I also had the same reaction when I found this site and almost burst into tears with relief that I wasnt making it all up. I was so relieved to have an answer to all of my symptoms that were a mystery to doctors. I was also told that I would have no symptoms by a hematologist. I am just so glad i have a reason for all of my health problems.

chendrix7

May 15, 2012

To: all

I have BTM and was told that I might be more tired than most ppl, but for the most part, not have symptoms. I have had a few migraines in my life, maybe 10 altogether, but they were debilitating. I have a hard time arousing in the mornings and love to go to bed early. I could pretty much sleep anytime of the day. What troubles me most is that when I exercise, I have to really take it slow and steady otherwise I will get lightheaded, almost to the point of passing out, I even had an episode one time where my child had to pour cold water over my head because my speech got slurred and I couldn't move. It feels like I am having a stroke, but it really doesn't even have to be that hot outside. The sun does make it extremely harder to be active and much easier and more likely for me to be lightheaded and feel like I will pass out. Why do I push myself to this point sometimes? Because I get aggrivated at not being able to do the things I should be able to do! I get tired of standing on the sidelines and just WATCHING ppl work outside! Grrrr..... So, sometimes, I get it into my head that it is rediculous and I will do it anyway, which always ends with me having to get into a cool area and sit down before I pass out..... My family always gets annoyed with me for being tired all the time!!!! WHat can I do?????????????

deltapetal

May 19, 2012

To: sore muscles

Does anyone have trouble with their muscles. I cant do simple things like wash my car or sweep and mop my floors without feeling like i have run a marathon the day after. I was diagnosed with Thel B minor when i was 18 and then diagnosed with mild fibromyalgia and chronic fatigue when i was 23. I found out when i was 30 the chronic fatigue was sleep apnea which a machine has made me feel human again. I still have fatigue from thel b minor but can cope better. Anyway i was labelled with fibrmyalgia which i am sure they just say this as they dont know what else it is, it went away when i was 24. I am now 32 and i have sore musles again. Just interested to know if any of you suffer as much with muscle pain?

jlac5

May 26, 2012

To: all

Thanks for this forum and all the posts! I also have been living with this condition since I was a child. I am now 32 and have 3 kids, a full time student and works once a week. I inherited thalassemia from my mother. What worked for me is sleeping earlier than usual or takes naps when possible. Eat small meals frequently. Avoid fatty, greasy foods and high in carbs. Hope this helps! Daily routines have worn me out and I also have experienced brain fog. For muscles aches I usually apply a small amt of topical agent such as icy hot or I'd sleep with a nice neck pillow if I have neck or back pain semi-fowler's position.

kalank

May 28, 2012

Can BTM lead to severe foot cramps especially at night?
How about varicose veins around the ankles?
Thin bones, esp wrist bones very thin and slender with long fingers?
Triangular face with prominent cheek bones?
Kent

lenas7763

May 31, 2012

To: All

Anyone have info or personal experience on peri - menopause ..associated with Beta Thalesimia? I am 48 and getting period every 13 to 15 days... Yes thats twice a month UGG.. Never had cramps so bad ...My abdomen is just cramping up so bad....Was wondering if any one has had this happen ! Thank you ! Feel better all and stay hopefully positive
Love Leena

mommabull

Jun 02, 2012

To: chadhlfg

I have BTM and have been diagnosed with cronic (chronic) fatigue and fibromyalgia. All this which seems to still leave me with no answers to why I feel the way I do. My father ( who also has BTM )was recently diagnosed with hemochromatosis which is when your body absorbs too much iron. My grandmother ( who had BTM) was given iron infusions and died of cirriousis of the liver and never drank. I am really concerned that the hemotologist killed her with iron overload. I cam across this age and found it interesting. Thanks, Michelle

mommabull

Jun 02, 2012

To: wygvn

I have IBS