Thalassemia Patients and Friends
Discussion Forums => Thalassemia-related Issues => Topic started by: Medical on January 20, 2014, 11:01:34 AM
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I am male from South east and recently diagnosed with Known alpha thalassemia trait (
3.7deletion ) and a Hb variant. I am an engineer by profession and live in Canada
Pathologist Comments : The patient is heterozygous for Hb
Fontainebleau. This variant is not known
to be clinically significant.
I am curious to know, How it happened. How would it affect my life and what do I need to do in regards to treatment, eating habits and lifestyle. Thanks
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You were born with these alpha variants. They are hereditary, but you may have never known you carried alpha thal because it is mostly asymptomatic. The Fontainebleau is clinically insignificant, but you should be aware of its properties in blood smears so that doctors don't label you as diabetic by misinterpreting tests for HbA1c, which is used to monitor diabetics. Hb Fontainebleau behaves just like HbA1C in the blood smear, so the chances of misinterpretation are there.
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I have been feeling general weakness since so many years, like cannot stand for more than few minutes and feel like sitting down on chair, more comfortable in sitting cross legged even on chair since feel tiredness in legs/ feel more comfortable , if I have support of cushions under my arm and elbow while sitting. On top of it my nasal septum is deviated to left and because of sinusoidal and some food allergy have lots of mucus and flem coming out of my mouth and nose, all the time and always carry napkinh in my hand or pocket
Anyway, I just want to know because of alpha thalassemia, what could be the effect on my life
Do I need any medication, change some lifestyle or food habits ?
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The main thing prescribed when alpha thal is present is folic acid supplements, as folate is needed to build red blood cells. I like to go a bit further and suggest that in addition to 2-5 mg folic acid, that a B complex, natural vitamin E and magnesium are also taken. A healthy diet is also important and junk foods should be avoided. Try to incorporate antioxidant foods into your diet. Fruit, vegetables, nuts and beans are all good sources of antioxidants. The goal is to build as healthy red blood cells as you can and to slow down the early death of red blood cells that takes place in thalassemia. Also, be aware that dairy products do tend to cause more mucus. And regular exercise is essential, even if only mild exercise like short walks. It's important to get the leg muscles pumping blood. A characteristic of thal is low blood flow to the extremities, so you have to help your body with some exercise.
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Thanks for help
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As discussed, I have alpha Thalassemia trait ( 3.7 deletion ) and HB variant
I got copy pf my blood report and noticed RBC 6.05 against 4.20- 5.40. MCV 76 against 82-98, MCH 25.3 against 27.5- 33.5
RDW 14.6 against 11.5-14.5
Surprisingly my hemoglobin A2/ Total hemoglobin is 1.2 against 2.0 - 3.5. What does it mean ?
I go to gym for exercise like cycling and elliptical and stretching. Is it OK to have a spoon of "Whey protein Isolate" after the exercise
I am taking pills for vitamin D also ( 2000 IU/ day ). Thanks
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I would like to ad that my Ferritin level is 29 against 15- 300. Does it means that I have iron deficiency as well ?
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HbA2 is lower in alpha thal minor because due to the gene deletion, there is less alpha globin produced, so less is available to produce HbA or HbA2.
Whey protein is fine to take.
Your ferritin is at the low end of normal but within normal range. I also will point out that I see low ferritin reported regularly by alpha carriers. I do not think it has anything to do with low iron. Alpha thals are regularly given iron when it shouldn't be given, so be very cautious about taking iron.
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Thanks Andy. How abt other results going out of Range, as below ? How often shall I go for blood tests to find out what is going out of range and require some action to be taken
I got copy pf my blood report and noticed
RBC 6.05 against 4.20- 5.40.
MCV 76 against 82-98,
MCH 25.3 against 27.5- 33.5
RDW 14.6 against 11.5-14.5
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All the test results are normal for thal minor. They will not change much at any point. They are all the result of thalassemia. MCV and MCH relate to average size of the red blood cells, and this will always be low because you have small RBC's in addition to the normal ones. Because the tests came out at these levels, thal was suspected. It's up to your doctor how often a CBC should be run, but you might want to ask for an annual Hb check.
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I have alpha Thalassemia trait ( 3.7 deletion ) and HB variant along with bit of good cholesterol Problem. I am taking care of diet . doing yoga and regular to Gym
for the last one year, I am taking :
bit of walnut, almonds in the mor,
Blended strawberry+ blue berry with bit of cranberry juice ard 10 am
some cantaloupe+ papaya in the afternoon
cucumber, spinach, broccoli and half avocado with lunch
Going to gym on reg basis / doing yoga in the morning. Taking Vit D tablets 2000Ui/ day, B12 ( being vegetarian) 2500 mcg/ day and folic acid 400 mcg/ day on reg basis
inspite of it my HDL cholesterol and Risk factor ratio ( Chol/ HDL ) is not improving. for the last two years the results are as below
HDL : Required >.90 Observed as .90/ .76/.77/.70 recent one
Risk Ratio Chol/ HDL Required < 4.9 observed as 4.70/ 4.95/ 5.39/ 5.76 Recent one... increasing on consistent basis
Am I doing something wrong . What further I need to do to improve my good cholesterol
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I don't think you're doing anything wrong, other than giving relevance to the ratio. What are your actual numbers for cholesterol, HDH and LDL? The American Heart Association recommends using the individual numbers and not the ratio.
AHA Recommendation
We recommend using the absolute numbers for total blood cholesterol and HDL cholesterol levels. They're more useful to physicians than the cholesterol ratio in determining the appropriate treatment for patients.
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HDL Cholesterol 0.70 against >0.90 mmol/L
my concern is that it is consistently going down .
.90 May 7, 2012
.76 Dec 29, 2012
.70 Feb 19, 2014
While LDL Cholesterol remains within limits
it is 2.38 against 1.50-3.39 mmol/L
2.48 , 2 yrs ago
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I cannot find any explanation for your HDL going down while the LDL level is is in an optimum range. LDL is the far more important reading and yours is excellent.
Do you have your total cholesterol level available? And has your Hb level been stable during this period or has it dropped?
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Hi Andy,
To answer your questions,
My total cholesterol is 4.15 Against 2.00 - 5.19 mmo/ L
HbAIC is 6.00 against 4.5 - 6.00 % and this is more or less stable , varies between 5.9 and 6.00
BUT HbA2 ( Total Hemoglobin ) is 1.2 against 2.00 - 3.50 , my doctor got it tested only once
Thanks
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The HbA1C test is virtually useless in thals, as variant hemoglobins will make this appear higher than it really is. Doctors should not put any value on the test.
Your HbA2 will always be low because you have a deficiency of alpha globin. It doesn't make any difference anyway.
You are following a good diet. Your cholesterol and LDL are both excellent. I can find no explanation for the low HDL levels, but there is some possibility that hemolysis, which is constantly ongoing in thal minors, is causing interference in the test. Episodes of hemolysis can also take place when exposed to certain foods and chemicals. I don't recall if I showed you this list, but in general, avoid chemical fumes, even things like artificial scents found in many household products. Check the list at http://www.thalassemiapatientsandfriends.com/index.php/topic,3410.msg34830.html#msg34830
A sudden bout of tiredness may be due to hemolysis and the Hb would be temporarily lower. If this occurs, you should review if you were exposed to chemical fumes or may have eaten some broad beans.
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During my recent blood tests Vitamin B12 level is measured as 697 pmo/L against required range of 150- 650. What does it means ?
Also, I am taking some of vegetable including spinach on reg basis, as suggested by you. I am taking spinach, broccoli, green pepper, cauliflower, mushroom, cucumber . Could you tell me which vegetable are to be taken as raw and which ones need to be boiled and taken
Right now, , Except cucumber, I boil everything for about 5-7 minutes before eating.
Regards
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You're around the top end of normal for B-12. However, much higher levels are observed in people and it causes no problems. I think it's a sign of a good diet. As far as the veggies, in general raw has high nutritional value, but if steamed or sauteed, they still retain most of their value, so it's more of a matter of how you like your vegetables prepared. However, boiling will cause the greatest loss of nutrients. A pressure cooker is ideal and a steamer is also quite good. If you do boil, it's suggested that you keep the water to use for stock for soups and sauces.
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Hi Andy,
My HDL and LDL about four months ago was as below. As you know I am having alpha thalassemia trait
HDL = .70 against reqd value > .90
LDL = 2.38 against reqd value 1.50- 3.39
For the last four months, I am maintaining strict diet, regular exercise, lost ard 15 lbs, eating fruits and vegetables, steamed vegetables, berrys, but HDL and LDL readings has not changed much. The recent results are as below
HDL = .71
LDL = 2.56
What could be the reason behind it and what else could I do to raise the good cholesterol ( HDL)
Thanks
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I don't think the low reading has anything to do with your diet. It is far more likely that this is related to the ongoing hemolysis and the effects of bilirubin, which is released by the break down of red blood cells, on the test itself. I would not be concerned at all about this. Your diet is good and there is no reason to suspect your cholesterol levels are problematic. I just don't think you're going to get a totally accurate measurement because of the hemolysis that takes place constantly in thal.,
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I have found a real possibility that would explain why your HDL remains low in spite of your efforts. There is a genetic polymorphism found in South Asians that leads to this. I have attached a study to this post as a pdf file. I would suggest that you talk to your doctor, show this report and ask about being tested for the polymorphism. It is unlikely that your doctor is familiar with this report, as it is dated 2012 and is very recent. It would explain the low HDL and your doctor may be able to better advise you on a diet that would be best if you carry the polymorphism. If this is the case, it has no relation to thalassemia.