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Thalassemia Patients and Friends and thalpal Ā© A. Battaglia 2019





55375 Posts in 5922 Topics by 6232 Members
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A message for all  parents who are thals. Keeping your iron load under control is an absolute obligation to your children.
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Author Topic: Study Finds Thal Minors do Have Symptoms  (Read 229153 times)
Andy Battaglia
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« Reply #120 on: May 19, 2013, 11:17:09 AM »

I wouldn't bother with a vitamin C test. C is water soluble and does not stay in the body for long, so it needs constant replenishing.
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« Reply #121 on: September 09, 2013, 12:53:06 AM »

Thanks for posting the article. I was diagnosed about 10 years ago and was told that the thing I had to watch was excess iron and that if I got sick it would take me longer to get over things. I found this group last year and have been so grateful to have an explanation for so many things that I feel everyday and now I have something to give my doctor.
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« Reply #122 on: September 10, 2013, 06:48:32 AM »

Hi,
Being a Thalassaemia Minor I know that I have always suffered symptoms but I fear that if I show this study to my doctors they would just dismiss it because it has not been sent to them from the top. Medics and such always attend refresher courses where they are told about new findings and if they have not been presented with this research then we are fighting a loosing battle.
Thank you for the information, I have the Thalasaemia nurse coming to visit me on the 24th to take some bloods. I will show her this and hope she might look into it.
Regards Tina.
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vinayak
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« Reply #123 on: September 16, 2013, 03:03:51 PM »

hi Andy this information is really very helpful thank you for posting this information
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Lavender
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« Reply #124 on: November 06, 2013, 05:07:31 AM »

Hi,
I am new to the forum and have found it very interesting. I do though have one particular question.
My daughter (Amy) has beta thalassemia minor, diagnosed a couple of weeks ago and I am going through the same doctor's responses as posted elsewhere that she is an asymptomatic carrier when in fact she shows all the symptoms mentioned in this forum.
One complication is Amy is a profoundly mentally and physically handicapped little girl (23) and cannot hear or speak so cannot communicate what she is feeling. That something was wrong came to light about two months ago when she developed and has continue to develop very significant unexplained bruising mainly on her upper arms and often covering most of her upper arm.
I cannot find this mentioned in the forum and wondered had anyone suffered from this and were there any known causes or treatments that seemed to be beneficial.
Any help would be very much appreciated
John
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Andy Battaglia
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« Reply #125 on: November 06, 2013, 09:07:00 AM »

Hi John,

Bruising easily is often a sign of vitamin C deficiency, as lack of C weakens the capillary walls. The simplest thing would be to try a supplement and see if it alleviates the bruising.
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redfrisby
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« Reply #126 on: January 24, 2014, 09:42:49 AM »

Hi All...

Diagnosed as having Beta Thalassemia minor/trait years ago I am now 34 and have always managed ok - at times I have been very anaemic but always recovered.
The problem is that the last few months I have been getting severely fatigued - so much so that some morning my husband has been unable to wake me, I seem to have more energy at night.
My question is can this get worse? I live in the UK and my doctor like many think there are no symptons.

I could cry I feel so disorientated and tired at times. I have three young children but no other mothers seem to struggle the way I do, to do everyday things like taking the kids to school....

Any help appreciated

Leanne
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ranajoychatterjee
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« Reply #127 on: January 26, 2014, 11:14:44 PM »

Hello Everyone,

Thanks to Andy for approving my registration. I have a nine year old who has healthy growth and bit overweight. He was recently complaining of pains and tiredness, because of which we took him to the doctor treating my wife. She is having Ankolysing Spondylities and therefore we were worried on that account. Initial blood test reports showed that he has Vitamin D deficiency low haemoglobin, but no symptoms of Ankolysing Spondylities.The doctor did a repeat test with haemoglobin electrophoresis and the test reports are attached. I read somewhere that kids of 9-11 have HbA2 of upto 14, does this mean my son Rishit has Thalassemia Trait ?
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Andy Battaglia
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« Reply #128 on: January 27, 2014, 06:23:03 PM »

Leanne,

The first thing you should do is get your vitamin D level checked, as deficiency is extremely common and deficiency exacerbates the symptoms of thal minor. Your level should be a minimum of 30, with the understanding that optimal is at least 50. Your doctors will of course say thal minor has no symptoms, which is rather silly considering the thousands of thal minors who have reported similar symptoms here and at other thalassemia forums. Thal minor has real symptoms. There really isn't much doctors can do anyway. It results in an anemia that can't be treated with iron and there is no med that will raise Hb, and low Hb is only part of the problem. You have one beta globin gene that has a defect or deletion and it produces little to no beta globin, which along with alpha globin form hemoglobin, so without an adequate amount of beta globin, you can't produce a normal Hb level. Instead small, pale misshaped red cells are formed along with the good ones produced because you do have one normally working beta gene. The weak RBC's break down more quickly, leaking hemoglobin and cell parts into the blood. In addition, your body produces alpha globin normally, so you have an imbalance between the two globins, leaving excess alpha chains which combine together to form tetramers that like the bad RBC's cause oxidative damage throughout the body. This is the other, often ignored side of thalassemia, but it causes or contributes to many of the problems thals will have. I believe that the best thing a thal minor can do is change their diets and nutrition so that the components of blood cells are comsumed and plenty of antioxidants are also used to counter the damage being done by the constant oxidative processes at work. Please look over the post at http://www.thalassemiapatientsandfriends.com/index.php/topic,4890.msg46774.html#msg46774
You will learn much about what you can do to help yourself feel better and be in better health. When you look at food, think nutrition and antioxidants and include antioxidant supplements as part of your regimen. Folic acid and B complex are important components of RBC's. Thals have a higher than normal need for many nutrients and they need to be replenished. Minors who do follow a good supplement program and get at least some mild exercise regularly, do improve. There is nothing that will make you feel completely normal, but you can do much for yourself without the use of meds. This approach does take time, but the alternative is to do nothing. Some other basic tips are pace yourself and catch a nap whenever you can. You're dealing with chronic anemia and you don't have the same oxygen supply as non-thals. You have trouble keeping up because of a real health issue, so don't compare yourself to those who don't have this problem. We hear from so many people who express the same thoughts and it really does help knowing that it's a real thing that limits your physical activity.
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Andy Battaglia
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« Reply #129 on: January 27, 2014, 06:32:20 PM »

Ranajoy,

Do you know which parent is also a thal minor? Your son definitely has it, so one of the parents is also a thal carrier. The HbA2% will only be seen that high in thal minor and the other blood values also indicate thal minor.

What is his vitamin D level? This needs to be rectified, as D deficiency will make thal minor issues worse. Does he take any vitamins or supplements? Is he cooperative about eating nutritious foods like fruits and vegetables? Proper nutrition is important in thal minor. I will refer you to the thread on nutrition at  http://www.thalassemiapatientsandfriends.com/index.php/topic,4890.msg46774.html#msg46774

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« Reply #130 on: February 07, 2014, 01:53:11 PM »

This is my latest sets of blood work. What can I do to help with my symptoms. I am so tired and hurt all the time along with a whole host of other things. I also have liver disease and am a carrier for hemochromatosis on top of the beta thal minor and other things. Any help would be appreciated.

01/29/14 06:00RoutChems [Performed by Three Rivers Hospital Lab] Percent Iron Saturation: 50     

01/29/14 06:00BasicMetab [Performed by Three Rivers Hospital Lab] Sodium Blood: 140 mmol/L (136-145)    Potassium Blood: 3.7 mmol/L (3.5-5.1)    Carbon Dioxide Blood: 28 mmol/L (21-32)    Urea Nitrogen Blood: 11 mg/dL (7-18)    Creatinine Blood: .7 mg/dL (0.6-1.3)    Glucose Blood: 120 mg/dL (74-106)    Calcium Blood: 9.4 mg/dL (8.5-10.1)   

01/29/14 06:00CompMetab [Performed by Three Rivers Hospital Lab] PROTEIN TOTAL BLOOD: 7 g/dL (6.4-8.2)    ALBUMIN BLOOD: 3.7 g/dL (3.4-5.0)    BILIRUBIN TOTAL BLOOD: .7 mg/dL (0-1.0)    ALKALINE PHOSPHATASE BLD: 80 U/L (50-136)    AST: 34 U/L (15-39)    ALT: 76 U/L (12-78)   

01/29/14 06:00RoutChems [Performed by Three Rivers Hospital Lab] Iron Blood: 130     Total Iron Binding Capacity: 258     Ferritin Blood: 219     

12/12/13 12:36CBC [ Clinic #: 6153220128.] WBC: 5.7 x10(3)/mcL (3.9-10.7)    Hemoglobin Blood: 11.8 gm/dL (11.8-16.0)    PCV BLOOD: 38 % (36-43)    MEAN PLATELET VOLUME: Not Measured fL (9.3-12.8)    PLATELET COUNT: 192 x10(3)/mcL (135-371)    Red Blood Cells: 5.76* x10(6)/mcL (4.00-5.50)    MCV: 65* fL (81-98)    MCH: 20.5* pg (27.0-32.0)    Mean Corpuscle Hemoglobin Concentration: 31.4 gm/dL (31.0-35.0)    RDWSD: 37.4 fL (37.4-52.4)    Red Blood Cells Width Distribution: 16.5* % (11.1-14.3)   

12/12/13 12:36Differentl [ Clinic #: 6153220128.] NUCLEATED RBC: 0 /100_WBC     NUCLEATED RBC#: 0.00 x10(3)/mcL     

12/12/13 12:36Coag [ Clinic #: 6153220128.] PATIENT (PT): 13.1 seconds (11.0-14.6)    INR: 1.0     

12/12/13 12:36BasicMetab [ Clinic #: 6153220128.] Sodium Blood: 138 mmol/L (136-144)    Potassium Blood: 3.6 mmol/L (3.3-4.8)    Chloride Blood: 104 mmol/L (98-107)    Carbon Dioxide Blood: 27 mmol/L (21-29)    Urea Nitrogen Blood: 12 mg/dL (7-21)    Creatinine Blood: 0.77 mg/dL (0.57-1.11)    eGFR: > 60 ml/min/1.73m2     eGFRAA: > 60 ml/min/1.73m2     Glucose Blood: 84 mg/dL (70-99)    Calcium Blood: 9.1 mg/dL (8.4-10.5)    AN-GAP: 7     

12/12/13 12:36CompMetab [ Clinic #: 6153220128.] ALBUMIN BLOOD: 4.3 gm/dL (3.5-5.2)    BILIRUBIN TOTAL BLOOD: 0.8 mg/dL (0.2-1.2)    ALKALINE PHOSPHATASE BLD: 63 unit/L (40-150)    AST: 48* unit/L (5-40)    ALT: 77* unit/L (0-55)   

12/12/13 12:36RoutChems [ Clinic #: 6153220128.] Bilirubin Conjugated: 0.4 mg/dL (0.0-0.5)    Iron Blood: 71 mcg/dL (50-175)    Total Iron Binding Capacity: 267 mcg/mL (250-450)    Percent Iron Saturation: 27 %     Ferritin Blood: 239* ng/mL (15-204)   
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Andy Battaglia
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« Reply #131 on: February 08, 2014, 09:09:37 AM »

Since you have hemochromatosis, would your insurance cover a liver MRI (Ferriscan) to check for iron in your liver? Your iron levels all do show high but it can build in the liver and not be revealed by the iron panel. Since there have been liver disease related deaths in your family, this is very important. An iron loaded liver will eventually cause liver failure, so if an iron load is present, it must be addressed.

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« Reply #132 on: February 14, 2014, 11:26:36 AM »

I am sure it would if my liver specialist would show them that it is medically needed.   My liver specialist believes that it is caused by nash even with the family history hemochromatosis and beta thal and me telling her how I feel it all is combined. I am considering looking for another liver specialist but not sure if I should. Beta thal is not very common here and only a hanful of all the doctors I have seen know anything about it. My hematologist I was seeing said me and my grandmother where the only cases he had ever had. I will press the point with her it couldn't hurt anyway lol. Thanks for looking over my labs
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« Reply #133 on: February 15, 2014, 03:24:39 PM »

I feel that it is very difficult for doctors to properly treat patients when they are reluctant to run the tests which can rule in or out various possibilities. Because you do have hemochromatosis, an investigation of liver iron concentration would be beneficial.
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Andy

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« Reply #134 on: March 04, 2014, 10:11:15 AM »

This is the response I got from my liver specialist when I asked them to do the ferriscan. 


Ms. Bull: I am not sure if this imaging is done here at Vanderbilt. I discussed with Dr. Perri and it is felt that this imaging is not very reliable. I can check with our radiologist. Given that the test isn't that reliable it probably will not change your treatment course.
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