Thal intermedia and bone problems - Thalforum

nitman · March 6th, 2006, 01:08 PM

Hi,
I've been reading extensively on thal intermedia. It appears to me that on later stages, as person get older, he/she might have bone loss problems. Has any study been done on older patients? Is there a way to pre-empt this problem. I was thinking in terms of diet and exercise.

-Nitin

Vik · March 6th, 2006, 03:03 PM

Hi Nitin,
More than 75% of thal major have or get osteopenia at some point in their lives. Although it is because of MANY factors - such has blood transfusions, desferal toxicity, low physical routine, etc.

But for Thal Intermedia I am not sure if one develops bone probs. However from a personal experience - diet and excercise do play an important role.

Excersicing - skipping and running helps a lot I've noticed. Even doing little bit of light wieghts regularly can dramatically effect the bones in increasing bone density.

I'm contantly taking over-the-counter calcium supplements conbined with vitamin D. I do not like milk but have been supplementing my diet with cheese and lot of homemade curd.

Vik

nitman · March 7th, 2006, 10:55 AM

Yeah

nitman · March 7th, 2006, 10:56 AM

Yeah, I guess taking healthy intake of dairy foods can help. But, for blood to increase the absorption of calcium, I guess routine exercise is a must too.

poppy · March 9th, 2006, 09:05 AM

whats osteopenia?

Prince · March 9th, 2006, 06:01 PM

Excercise is must for all humans to stay fit.........................Thals are no diffrent.

Suggested: Running, cycling, weight training & streaching most important.

ariespar · April 8th, 2006, 02:22 AM

Hi everyone, I was about to have a splenectomy and did some pre-ops. Had a chest ex-ray done and they found a nodule in my chest about 2 cms. I then had to do a CT scan and they found 8 more nodules in the lining of my lungs near my ribs. I was so scared that I might have cancer but I just got my biopsy done yesterday and it turns out that the nodules that were all located underneath my ribs were bone marrow matter. Just wondering if anyone has had something like that before. Also I did not have my surgery done because of low blood count so I was givin procrit for the last month 1/2. Am wondering if that could of caused the bones in my ribs to produce excess marrow.

poppy · April 8th, 2006, 05:24 AM

I've had a nodule removed from my thyroid which ended up being nothing and i've also had a cyst removed which again was nothing. Now i have a small fatty lump on my back which you can't see but i know its their! Anyone else with different or similar growths?

babylegs · April 9th, 2006, 08:52 PM

Hi my thal Dr had me do a bone density test...and sure enough there were some problems..I have been taking Calcium with Vit D over a year now and I am going backin for another bone density test in a couple of weeks.

babylegs · April 9th, 2006, 09:00 PM

Osteopenia is a condition in which bone density is below normal and may lead to osteoporosis.

Vik · April 9th, 2006, 11:24 PM

Quote:

Originally Posted by babylegs

Osteopenia is a condition in which bone density is below normal and may lead to osteoporosis.

yes, that right.
Osteopenia may lead to osteoporosis if left untreated.
Most (almost 70-80%) thal majors are known to have or have had at some point of their lives reduced calcium levels.

With regards to lumps/cyst/node, no such experience so far.

ariespar · April 20th, 2006, 01:43 AM

Hello all, The nodules that were found by my ribs turned out to be bone marrow matter. It is a rare condition called Extramedullary Hematopoiesis with Erythroid Hyperplasia. Anyone ever heard of it or has it? I did some research about it but I was wondering if anyone has it.

marientina · April 20th, 2006, 09:19 PM

It is nice to be greek to at least know what this means...

Extramedullary = outside the bone marrow
Hematopoiesis = making of the blood
Erythroid = red
Hyperplasia = overgrown

So your body is making red cells outside the marrow and giving you lumps. Very interesting. I had never heard of this and I will look more at this. Are you on hydroxyurea treatment?

Some articles:
Treatment with hydroxyurea in thalassemia intermedia with paravertebral pseudotumors of extramedullary hematopoiesis.
http://www.ncbi.nlm.nih.gov/entrez/q...&dopt=Abstract

Some other articles cite that transfusions help correct the problem. If you have thal intermedia and need a transfusion and you are not getting it, you will definitely increase your chances for bone and tissue problems. Your body degenerates due to ineffective hemoglogin production...blood is pretty necessary stuff...

Nadia · April 21st, 2006, 06:47 PM

I have always suffered with lumps on my wrists and knees, and seem to have a regular nagging ache in my wrists all the time. When I was much younger I was sent to rheumatoid arthritis specialists who never found anything, but no doctor has ever given me an explanaition for the lumps in my wrists. They do become more inflamed at times, and sometimes they don't bother me at all. However I don't have particularly good flexibility in my wrists.

I only have T-minor so doubt any of this is applicable to me but it does make me wonder slightly. I always thought they were ganglions, which they probably are but still.

marientina · April 21st, 2006, 07:22 PM

We have had a few people here complain of the same problems. I certainly have endless wrist problems but I also have issues with my circulation and soreness on my legs.

I had a lump on my wrist for long time that finally went away and was very painful. I also use the computer very much so it is hard to say. I was helped by ice and lots of MSM supplement (not recommended for people with thin blood problems or shellfish allergies).

The link between arthritis and thal minor is not really clear and research is very conflicting on whether they are related or not. Bone density problems are common with thal major but inflammation is a whole other thing...lumps need to be looked into. Mine was actually a tendon that popped out the wrist sheath and I went to a physical therapist who did deep tissue massage and managed to slowly shove it back into the wrist.

My wrist still hurts, but I have so many structural problems it is hard to tell where thal begins and ends. I was born with clubfoot which has cause me to trip and fall three times in my life, twice I broke my nose and sinus cavity and required major surgery. Because of the clubfoot which was not surgically corrected but done with physical therapy, my hip joint is very sore and acts arthritic. Later in life I felt down the stairs and had a small fracture on my upper spine which caused permanent numbness from scar tissue. You can stick a fork in me between my right shoulder blade and the spine and I wouldn't know it...Sometimes it is sore and sometimes it is numb. That has caused added stress on my elbow and wrist on the right side...

And then to top it all off, my lower back made a crunchy noise two years ago while lifting something improperly and has never been the same twice.

Having thalassemia doesn't cause all these things but it certainly complicates them. We just don't heal great after trauma. The evidence is in the bruising...