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a realy comprehansive article about thalassemia

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Offline nice friend

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a realy comprehansive article about thalassemia
« on: August 02, 2008, 11:06:33 AM »
its a realy comprehansive article about thalassemia ...in this article Author: Hassan M Yaish, MD, Associate Professor Of Pediatrics, Director of Hematology Services  mentioned many  issues related to the thalassemia and he also wrote something about the drugs for thals like exjade and others ...
i think its realy usefull ...check it and tell is it or not ???..
check this article  :

http://www.emedicine.com/PED/topic2229.htm
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Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.
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Umair
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Offline Bigg

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Re: a realy comprehansive article about thalassemia
« Reply #1 on: August 02, 2008, 01:55:44 PM »
I am still getting to know something new...
An hour ago I just found that thalassemia can cause you problems with hormones, and this article confirms it and says that you can have even more problems.
I have low growth hormone level and other problems with pituary, but I am still waiting for the diagnosis (before the diagnosis of thalassemia nobody would even consider taking care of this problem, because I am grown more than enough, so this seemed ridiculous that I can have low GH).
Hormonal problems cause me severe mucous membrane dryness (hormone problems are most likely to be the cause).

In the article, they write:
Quote
The direct cause of growth retardation in these patients is thought to be an impaired growth hormone production ...

Ok, but what is the cause of this "impaired growth hormone production" ?
Can it be because of the stress exerted on the body? Similar thing happens to the children who are abused, but in their case the stress is psychological.

Or maybe GH production is stopped because of zinc deficiency, as described here:
http://www3.interscience.wiley.com/journal/112699354/abstract

I am thal minor so this:
Quote
... or deficiency in production of somatomedin by the hemosiderotic liver. Involvement of the adrenal glands or the thyroid gland may also contribute to growth failure.
does not apply to me, because I do not have hemosiderotic liver.

Any ideas, comments appreciated.
Bigg
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Offline Bigg

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Re: a realy comprehansive article about thalassemia
« Reply #2 on: August 02, 2008, 02:40:25 PM »
I forgot, it is confirmed that thal minors also have growth problems (probably problems with growth hormone):

http://www.ncbi.nlm.nih.gov/pubmed/15507851
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Offline Andy Battaglia

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Re: a realy comprehansive article about thalassemia
« Reply #3 on: August 02, 2008, 05:51:27 PM »
I am often puzzled as to why not all thalassemia patients are told to take zinc supplements. In the early years of treatment, folic acid and zinc were the main recommendations for patients. I don't know why, but this information has not always been given to patients in more recent years. in fact, I have had patients tell me that their doctors have said folic acid won't do them any good. This shows a basic misunderstanding of the role folic acid plays in the health of the blood and circulatory system. It has always been known that thals are regularly deficient in zinc and should supplement but many thals are not aware of this. With this study you have found here, we can add minors into that category.
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Andy

All we are saying is give thals a chance.
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Offline nice friend

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Re: a realy comprehansive article about thalassemia
« Reply #4 on: August 02, 2008, 06:17:09 PM »
Quote from: Bigg on August 02, 2008, 02:40:25 PM
I forgot, it is confirmed that thal minors also have growth problems (probably problems with growth hormone):

http://www.ncbi.nlm.nih.gov/pubmed/15507851

well i :agree to you bigg .. if we (thal maj ) look around us we will find minors ..we can recognize to see them that they r hal minors bcoze of their  short in height ,, fat but not healthy ,, yellow spots on face and body , and soft muscles and soft & fat belly .... u can easily recognize that he/she is a thal minor ....its neccessory to give them strong attention and to ask them to take treatments to prevent weaknes and being spoted in first sight  .. and grow properly as  a normal  person grows up..... yees andy i m agree to you too some doctor stops to take folic acid  i dont know y but its true ....... my doctor sugested zinc suplement for me a year ago and i m still on it....
@bigg
i m not a thal minor i  a thal maj  but i want to say something that is, my doctor treated me in this way ,
1st :  set the dose of insulin
2nd : told me to controle iron levels bcoze when iron stored in thyroid gland , the thyroid gland stop working   
        properly that effect's on growth very badly
3rd :  my doctor sugested Thyroxin pills for me bcoze of thyroid gland prob .
4th :  Zincat, Vitamin E 200 mg  along with thyroxin and d-calc
5th : stopped thyroxin after using 11 months

now my levels r good and almost normal .....

i want to mention some thing here that a Folic Acid 800mg is available in market by an american company ...
you can check for that : i have some links to share abt it here these are the links :

http://www.vitaminshoppe.com/store/en/browse/sku_detail.jsp?id=CF-1540&st=ps&source=YI&campaign=VitaminShoppe&gcid=C19283x009&keyword=CF-1540
« Last Edit: September 16, 2008, 01:30:08 AM by nice friend »
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Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.
===========
Umair
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Offline nice friend

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Re: a realy comprehansive article about thalassemia
« Reply #5 on: August 02, 2008, 07:19:19 PM »
emedtv
Quote
Severe Symptoms of Thalassemia
In more severe types of thalassemia, such as Cooley's anemia, symptoms may include:
 
Fatigue and weakness
Pale skin or jaundice (yellowing of the skin)
Protruding abdomen with enlarged spleen and liver
Dark urine
Abnormal facial bones and poor growth.
 
Infants who have the most severe type of alpha thalassemia (hydrops fetalis) generally die either before or soon after birth.

emedtv
Quote
Other Treatments for Thalassemia
People with severe thalassemia are more likely to get infections that can make their anemia worse. Therefore, people living with thalassemia should get an annual flu shot and the pneumonia vaccine to help prevent infections. Also, taking folic acid supplements is important, as folic acid helps build red blood cells
emdicine
Quote
Treatments and procedures

Blood transfusions - most common treatment for all thalassemias; provides healthy red blood cells
Chelation therapy - frequent blood transfusions cause iron to build up in the body. It has to be removed by medication before it causes damage to the heart and other organs.
Splenectomy - if the spleen is enlarged or contributing to the thalassemia it may be removed
Diet - Food rich in iron should be avoided. Vitamins C and E and folic acid are added as supplements.
Bone marrow transplant - provides the only cure for thalassemia. However, there are many risks involved, so it is usually reserved for severe cases.
New Research
Research is looking at a number of ways to treat different types of thalassemia.

In utero blood transfusion - Doctors give a baby a blood transfusion before birth to treat alpha thalassemia major.
Gene therapy - Researchers are trying to figure out how to correct or modify flawed genes to decrease or cure different types of thalassemia.
Hemoglobin F therapy - researchers have tried increasing the level of this type of hemoglobin but it has not had much effect on thalassemia.
Protein therapy - A protein (AHSP) has been discovered that helps regulate the amount of alpha protein in red blood cells. Researchers are now looking at using AHSP as a thalassemia treatment.
« Last Edit: August 02, 2008, 07:57:44 PM by nice friend »
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Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.
===========
Umair
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Offline Bigg

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Re: a realy comprehansive article about thalassemia
« Reply #6 on: August 02, 2008, 09:25:54 PM »
I found an article about hormones and sickle cell anemia and all these findings can be applied directly to thalassemia minor (not all of them) and major (probably all of them).

http://www.medscape.com/viewprogram/8569_pnt

I like this article a lot. They describe how the important hormones are affected by SCD.
What is important to me in this article is:

Quote
Decreased synthesis of IGF-I might be secondary to a disturbed GH-IGF-I axis and/or undernutrition, probably due to the hypermetabolic status of these children.[18,25,26] Several studies have linked excessive caloric loss to elevated resting energy expenditure in children with SCD; this raised expenditure might result from elevated cardiac effort and more-rapid erythropoiesis and protein turnover.[23,27]
what basically means that you do not have growth factor because you are tired and you are tired because of erythropoiesis.
Now, after taking all these vitamins, resveratrol and all, my hemoglobin is 15,8 (it was 14,8 in May), so erythropoiesis is as crazy as always. This may also be the cause for me...

Quote
2nd : told me to controle iron levels bcoze when iron stored in thyroid gland , the thyroid gland stop working   
        properly that effect's on growth very badly
Nice friend, this is probably not the case with me because my liver iron content is within normal range, but my blood iron level is still out of range high (two - three times), so is TIBC, so hypothetically, iron could be stored in thyroid gland and other, but is it possible to check thyroid gland iron content? Probably not... (biopsy?)
My hematologist says that this high blood iron level and high TIBC looks as if I was iron deficient, which is of course not true - it is because of this damned erythropoiesis.
I am getting concerned about this erythropoiesis, which cannot be stopped, and probably the only way to stop it would be to take hydroxyurea and induce fetal hemoglobin. Andy sugggested some time ago bone marrow biopsy to see if marrow is really hyperactive, but I will never convince my hematologist to do that (nobody will ever do this privately either) and based on the hemoglobin level, I can tell it is hyperactive anyway...
I am going to see my hematologist on Monday, so we'll see...
In the meantime the research went very well, so I will be prepared.
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Offline nice friend

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Re: a realy comprehansive article about thalassemia
« Reply #7 on: August 02, 2008, 10:08:25 PM »
BEST of LUCK BIGG ... :thumbup
wating for your next post after visiting haemotologist ...
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Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.
===========
Umair
*

Kathy11

Re: a realy comprehansive article about thalassemia
« Reply #8 on: August 03, 2008, 12:59:09 AM »
Good morning to all.
It's good to read all these articles  it's informative, although I basically find it conflicted, each article I read differs .
I believe, it has something to do with the depletion of hormones ,that is because on a personal basis I feel that my health condition got worst as I am getting older.
Anyhow I wish once and for all the doctors get it right ,thus, will enhance all thals sufferers lives

Thank-you for all the efforts taken to allow such reading materials.


Remember [u]God does not make junk ."We are all  irreplaceable and unique in our own right"[/u]
Bigg I hope you get a good result from the doctor. good luck and again thank-you for your time.
Kathy
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Offline Bigg

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Re: a realy comprehansive article about thalassemia
« Reply #9 on: August 03, 2008, 07:14:53 PM »
Another strange thing with me my blood results:
PDW (Platelet Distribution Width):    16,8 fl (6,1 - 11)              -> High
MPV (Mean Platelet Volume):    10,5 fl (5-10)              -> High
Platelet count: 308 thousands/ul (150-450)              -> Normal

These are relatively new blood parameters. Anybody has similar results?
What do they mean? I am getting confused ...
My hematologist is not gonna like it  :bat (another abnormality to diagnose  :puke).
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Offline nice friend

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Re: a realy comprehansive article about thalassemia
« Reply #10 on: August 05, 2008, 02:37:06 PM »
its a general article about thallassemia ;
but this link is realy usefull for patients from india ....
do visit it.. its great link i like this site .. n found it usefull .... u can order italian infusin system to them  , u can order thala set like needles to them , u can order research material to them  soo check it out ....

http://www.thalassemicsindia.org/treatment.html
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Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.
===========
Umair
*

Offline Bigg

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Re: a realy comprehansive article about thalassemia
« Reply #11 on: August 08, 2008, 08:32:39 PM »
Quote from: nice friend on August 02, 2008, 10:08:25 PM
BEST of LUCK BIGG ... :thumbup
wating for your next post after visiting haemotologist ...


Well, here it is.
The whole appointment took 45 minutes, there was great effort to think something out, but the only thing my doctor has come up with is to order some new tests. Now I'm waiting for new appointment to hematologist and endocronologist - both around the 25th of August.
The hematologist told me that I have no hyperactive marrow and this hemoglobin increase is due to vitamin supplementation. Maybe she's right. And I just got the latest results of iron level - it's 119 and the limit is 120 - so this time I am on the right side of the limit. I guess this will keep lowering.
I wonder what happens in the winter - because I've noticed that my hemoglobin gets higher in the summer and lower in the winter... and iron respectively lower in the summer and higher in the winter.
Strange - maybe I have something like cold aglutynins (this would cause hemolysis in the winter) or giant platelets. This is only hypothesis and I did not have time to explore it further, but some kind of indicator may be this strange PDW.
My hematologist did not say anything about this, assuming that it's just something not to worry about, but this was before I found my platelet histogram, which I include.

Here, you will find histograms of normal platelets (bottom diagram, PLT)
http://www.medicine.uiowa.edu/cme/clia/modules.asp?testID=4#09

As you can see, there is single peak at ca. 4 fl. for normal platelets.
In my platelets there is this peak, and another at ca. 32.
This might indicate giant platelets, but this peak is not consistent with the diagram indicating giant platelets from Iowa University.
So it looks like the second peak is because of two or three platelets glued together.
This maybe caused by irrelevant platelet clumping due to EDTA:

http://www.parkhurstexchange.com/qa/A.php?q=/qa/Hematology/2005-06-03.qa

or may be something more serious like cold aglutynins or:

http://arpa.allenpress.com/arpaonline/?doi=10.1043%2F0003-9985(1999)123%3C0159:COEAAE%3E2.0.CO%3B2&request=get-document

Well, it does not look like analyzer error, because I have similar platelet parameters from many different analysers, what until now passed unnoticed.

All in all, doing such research is very annoying and exhausting so I wish you all nice weekend without a minute spent doing research.

Regards
B
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