Need help regarding alpha thalassemia

  • 20 Replies
  • 22984 Views
Need help regarding alpha thalassemia
« on: January 20, 2014, 11:01:34 AM »
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

*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: Need help regarding alpha thalassemia
« Reply #1 on: January 20, 2014, 03:57:22 PM »
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.
Andy

All we are saying is give thals a chance.

Re: Need help regarding alpha thalassemia
« Reply #2 on: January 20, 2014, 06:59:10 PM »
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 ?

*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: Need help regarding alpha thalassemia
« Reply #3 on: January 21, 2014, 12:23:57 AM »
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.
Andy

All we are saying is give thals a chance.

Re: Need help regarding alpha thalassemia
« Reply #4 on: January 21, 2014, 07:18:17 AM »
Thanks for help

Low total hemoglobin
« Reply #5 on: January 28, 2014, 04:45:02 AM »
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

Re: Need help regarding alpha thalassemia
« Reply #6 on: January 28, 2014, 04:49:47 AM »
I would like to ad that my Ferritin level is 29 against 15- 300. Does it means that I have iron deficiency as well ?

*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: Need help regarding alpha thalassemia
« Reply #7 on: January 29, 2014, 02:46:12 AM »
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.
Andy

All we are saying is give thals a chance.

Re: Need help regarding alpha thalassemia
« Reply #8 on: January 29, 2014, 06:23:25 AM »
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

*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: Need help regarding alpha thalassemia
« Reply #9 on: February 01, 2014, 01:31:57 AM »
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.
Andy

All we are saying is give thals a chance.

Re: Need help regarding alpha thalassemia
« Reply #10 on: February 20, 2014, 08:47:19 PM »
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

*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: Need help regarding alpha thalassemia
« Reply #11 on: February 21, 2014, 12:38:58 AM »
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. 

Quote
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.
Andy

All we are saying is give thals a chance.

Re: Need help regarding alpha thalassemia
« Reply #12 on: February 21, 2014, 01:19:45 AM »

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


*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: Need help regarding alpha thalassemia
« Reply #13 on: February 23, 2014, 05:01:50 PM »
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?
Andy

All we are saying is give thals a chance.

Re: Need help regarding alpha thalassemia
« Reply #14 on: February 23, 2014, 11:39:31 PM »
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

 

SMF spam blocked by CleanTalk