Adults living with Thal, how do you support yourself?

Have you had your vitamin D level tested, also? Most find they are deficient and correcting the level can decrease tiredness and fatigue, while improving the overall health.

Have you had your vitamin D level tested, also? Most find they are deficient and correcting the level can decrease tiredness and fatigue, while improving the overall health.

I am pretty sure my vitamin levels are bad and malabsorption (weight loss of 8%-9%) would agree with this. I have to spell it out for my doctors and they never listen. I asked my internel medicine to check my vitamin levels and he was like not necessary. I was so angry and wanted to walk out right then and there. I went to GI specialist and he was the one who diagnosed beta thalassemia after run a bunch of test and ruling out iron anemia. I want either one to run vitamin / mineral test so I can get a good idea. Tiredness and fatigue is not at the forefront of my symptoms but more with abdomen, nausea, distended stomach belly (could be food sensitivity which I just found out).

Malabsorption of vitamins can be related to vitamin D level. For example, when D is sufficient, 30% of calcium will be absorbed. When deficient, only 10% will be absorbed. You may also want to check out your gluten tolerance because of your stomach issues.

I am a software developer. I work from anywhere basically and earn a decent money. I want to work from home but its difficult if you dont have the environment. Not just for thal it true for any home office.

I personally feel lucky to have decided to stay in software development. I am very good at it. Even though my county Bangladesh has very poor job opportunities for this field the global opportunities makes up for it. I would personally recommend such. It also helps to cope with the health problems.

Hello all
Very interesting histories here. I think all of us are brave and really not lazy !!!!!
Looking back and thinking in all my childhood and bumps around teen years in Brazil I see that if I was in the US probably I would have my thalassemia minor figured out . I suffered with syncope, dizziness,low blood ,pressure, short of breaf ,chest pain arhytmia ,anemia , headache...weakness syncope inside an Olympic swimming pool... Wow it's is a lot !   At age 18 I decided to get in show busy but the travels and hours imputed in walking and transportation to the casting calls soon started to give their tol on me .at that time I didn't really think that could be something related to my health . While being a model I remember things like being very pale ,falling on the cat walk and a photographer requiring from me that I not eat before a photo shoot because my stomach was not flat ( however I have not eaten nothing) ...at the same time I wanted to pursue a Physical Education University ( 20 to 22years old) I couldn't keep up with the full time studies ,commute , and stress . So I decided to just work since I was not able to work and go to school. Once I couldn't do much with my career either I started to work as customer service for a big bank in Brazil .I was a part timer and worker siiting down but I had my episodes of weakness for no reason and syncope between taking a break and going  back to work. After 10'years That I got married and have kids I went back to the workforce I'm on my 4th year In a demanding job in security .the stress and more hours are getting on me again I needed to go back to part time
Right now my husband has been worry and maybe want me to quit my job.im trying to cut back everything I can ...my naturopathic doctor also agrees with my husband ...I know I tried to use a lot of hats ..but I keep thinking that is my job that gives me health insurance that covers my thal doc...has been difficult these days

Hello all
I m Taslima,23 yrs old. In recent i found that having my thal intermidiate. I m worriod abt my weight is 43.5 kgs(5'3"). How wd gain my weight bcz it is under weight. Now also i used to take hydraxeurea and folic acid daily from 1 mnths. I also want to knw that there is any chance to surgery the spleen bcz it is quite large and the future of diposition of ferretin. Pls also suggst diate for gaining my weight.

Thank you SK. we will surely try to meet up with docs you recommended.

Thanks
Kiya

Hello , I suggest you to once Visit Dr. Vijay Ramannan in pune  before visting Dr. V.K Khanna..I Visited once there for my son..
Discouraging remarks from Dr. V.K Khanna from that time I with my son visited Dr. Vijay Ramannan.. Very good doctor..i personally feel.

BR//
Nitin

I am new to the group, Hi! I lived with thal. I used to fall asleep all the time and still do if I sit down long enough. I do not know how I got through sometimes. I work 40 plus hours and make time for learned that I need to take a time out. I recently had to have iron transfusions, and I do not understand how it all happened. That was scary for me.  I keep asking the Doctors if my thyroid and the anemia are connected and I do not get an answer. Funny !
I feel that if you take one day at a time even if you have to go on disability.

IF,

I read you bio and am concerned that you are still given iron infusions. A history of iron toxicity (which may be a possible answer to what damaged your thyroid), would suggest you should not be given iron. Because you have had toxicity in the past, is there any possibility that you could get insurance to cover an MRI scan of your liver to look for iron load? I have heard from several thal minors over the past year who suffered organ damage from long term iron. I really think an MRI is the only way you can know if you have stored iron. If an MRI was to show an iron load, your treatment would be very different. I don't think that with your history considered, you can count on normal testing for ferritin to tell you if there is iron stored in your organs. Stored iron often does not show up in ferritin results, as is the case with non-transfusing intermedia thals, who absorb far too much iron from the diet (minors will also experience some of this if their Hb drops below the 9.5-10 range). Quite often, the liver will be carrying an iron load that does not correspond with the ferritin at all.
In general, thal minors will benefit more from folate and B12 than they will from iron and often the iron is a negative.