Body weight in thal intermedia

Hi everybody,
I wanted to ask you all a question regarding body weight in thal intermedia. I'm a non-transfused intermedia and i'm extremely under weight. My body weight is constant for the last 10-15 years.  My question is: Can this be related to thal? Do thal intermedia get a hard time putting on weight? Is anyone other than me also experiencing the same?

As per my doctor I should not care much for weight gain but the fact that I'm so skinny drives me crazy at times

If you guys have any tips/suggestion/personal experience on how to gain weight(on a vegetarian diet), I'll appreciate that.

Thanks

Hi Hallu,
     I also have thal intermedia, but I have been getting regular transfusions for 3 years now.  Before I started transfusions, I ate tons of food all the time.  People couldn't believe how much I ate for my size.  I wasn't skinny, but I wasn't overweight.  One doctor told me it was because my body was working so hard to make blood all the time that it was like I was working out.  I don't know if that's true, but my body felt like it was exhausted, and that I needed to eat a lot.  I still get a little that way before transfusions, but I don't eat nearly as much as I used to eat.     
     How is your health?  Do you feel good?  What are your hemoglobin levels like?  How old are you, if you don't mind sharing that information.  It's good to meet you.  We can compare experiences. 
Take care, Jean 
   

Hi,
    I'm Thal. Major and I too have the same prob. Infact, my main query during the last MSN chat was the same issue along with my childish looks.

    All we came up with was to have more carbohydrates (bread, potatoes etc) in our diet, that's all.

Hello,

I am a thal major and not very skinny either...Not fat either..I was just reading this post about  being too skinny...

Sajid eating more carbs wont help that much..You have to eat all the right foods...But not the foods that contain high iron content...You have to eat alot of fruit, try to eat more fish and chicken if possible...

If I eat more carbohydrates in my diet I dont think I would be the size I am today..i would be a much bigger girl..

Also try exercising if you can..why not do some walking or some swimming..I know that swimming has helped me both physically and mentally....I have strengthened my bones doing swimming 3 times a week...


I hope this helps..

Smurfette

All,
Thanks guys for sharing your experiences.
Jean/all : I'm 31 year old. My health is OK. I won't say very good but won't say bad either. I do feel little tired by the end of the day. My Hb level is around 8, though there was a time when I got a viral infection causing it to drop to 6.8; I was transfused 2 units that time. I have a big spleen (around 22cm) and my doctor is currently evaluating if splenectomy should be done or not. Basically, for few months it'll be a wait and watch on my Hb/health.
Sajid: I can understand how you feel. As far as my diet is concerned, i eat decent servings but still don't gain weight. I can understand, what it feels to look underage.
Smurfette: I like your advise regarding exercising/swimming and eating healthy. Its admirable that you are so disciplined.

Has anyone ever tried weight gain shakes/ whey protein supplements? Any luck with them in gaining weight?

Also guys, recently I got my lipid panel tested and my cholestrol was abnormally low : HDL as well as LDL. Though the ratio is still OK and in the nornal range, but the fact that its so low is not good either. My doctor is not worried about low cholestrol (probably she has remedy to reduce cholestrol levels and not increase  ). I wanted to check with you and with the other ppl in forum if anyone other than me has similar lipid profile.  Is their a relation between low cholestrol and thalessemia? Or low cholestrol and body weight?

Looking forward for your comments/advice/experience on same.

Hello Hallu

Thanks for your kind comments..but I am sure that you all can do what I am doing to keep fit..

Ok as far as weight gain products..well most of them will have a high concentration of iron in them...and I wouldnt recommend for a thal major to take any supplements like that...Even for dieting..

You can take a multivitamin that has no iron and iodine..they are available...just have to look for them in the health food stores and pharmacies..

As far as cholesterol is concerened...I dont think that most doctors will be concerened with our cholesterol levels because of our thal...

Hope this helps
take care all
Smurfette

 

Hi everybody ....

I am Thalass intermedia 55 year old and I was very skin all my life ......
50 Kg for 1.75m !!!!!!!
this was because of the big effort to produce Hb !!!!!!
at age 42 I started on regular blood transfusion, 2 units of blood every 21 days....
after one year I started to gain weight and now I am 70Kg wich is the correct weight
for my 1.75m.......
I feel much better and I am more active  !!!!
I suggest to take the spleen out,you will feel much better and the Hb normaly
increase from 1 to 2 gramms after the procedure ....
cholesterol is usualy very low in all thal .....and low cholesterol is meaning less
strenght and activity .....the meccanism is not clear, I have low cholesterol too ....
One last think : life with blood transf and HB 11 is much better and funn ......

Take care to all

Cicci50

HI ciccio50,
Hello how are you,
In reading your recent posting ,stating that," cholestrol is usually low in all thal patients"gives me cause to think that either this statement is misleading or there is something really wrong with me having very high cholestrol that is being managed by medication.I'm confused.I thought that because our cells died prematurely, it accumulates and clog our arteries and this was one of the cause for high cholestrol in thal patients .Can anyone please tell me the fact about this subject.
Thank-you
regards Kathy11

I think cholesterol is a problem in Thal Majors. 

Our group is tested once a year.  Not sure why, I'm sure our doctor wouldn't request blood test if they were not concern.

My cholesterol is OK but my triglyceride is sometimes a little high.   I was told to have Omega 3 foods such as fish to help it reduce.

Hi!

Did a quick literature search at the National Centre for Biotechnology Information (NCBI) and found some research papers that seem to indicate that cholesterol may be lower in thalassaemia major patients, as well as in those with thalassaemia minor.  This may vary between different populations however.

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=Abstract&list_uids=15235691&query_hl=2&itool=pubmed_docsum
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=Abstract&list_uids=15630628&query_hl=2&itool=pubmed_docsum

A free article surrounding this can be accessed at:
http://www.pubmedcentral.gov/articlerender.fcgi?tool=pubmed&pubmedid=15023232

Whilst this might be the "norm", each person has a unique genetic makeup and the interaction between genes in an individual may vary from that of other individuals.  So although the research may indicate a trend of lower cholesterol in people with thalassaemia, some people with thalassaemia may not have lower cholesterol.  I guess it is similar to people with thalassaemia having different types of changes to the same gene, but some people need transfusions every 2 weeks, and some every 4 weeks.  Am I making sense?!?

SalD.

Hi all.
There are some studies and evidence that there is high cholestrol in thalassemics, yet the reason to be rule out. That includes even thal minors too.

Hello everyone,
Thank-you for all the informations  about high cholestrol in patient with thal.It is very interesting to keep learning about various research on this  subject. Good luck to all.Kathy

Studies show that high cholesterol in beta thalassemia patients is rarely found. Thals generally have low levels of HDL and normal levels of LDL. This is not necessarily a positive thing as the ratio of total cholesterol to HDL may not be optimum as a result.

From
http://www.lipidworld.com/content/3/1/3

The present study revealed that men and women with beta thalassaemia major have their blood lipid and lipoprotein levels within the normal range, and lower than the healthy individuals of the same age and population. An exception is the observed very low HDL cholesterol levels, which may underline the importance of total-to-HDL cholesterol ratio as a prognostic factor for future cardiac events in this high-risk population.

There are many factors at work here and a simple cholesterol reading does not tell the whole story and it should be emphasized that regular heart checkups are a requirement among thalassemics. An echocardiogram once per year is usually recommended.

Kathy, your high cholesterol level may be related to something else. One example is an underactive thyroid, hypothyroidism (also common in thals) which can lead to high cholesterol levels.

From  http://thyroid.about.com/cs/symptomsproblems/a/cholesterol.htm

Undiagnosed and undertreated hypothyroidism can cause elevated cholesterol, and of the estimated 13 million Americans with thyroid disease, at least half are undiagnosed and millions more are not sufficiently treated, opening them up to the risk of continued hypothyroidism symptoms despite treatment.