Thalassemia Patients and Friends
Discussion Forums => The Spotlight => Topic started by: LadyAnn on October 16, 2008, 02:13:08 AM
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I have been trying to find out more on Beta Thalassemia and came across this great site. It is nice to know there is a place to go to talk to others for advice and support. I still have questions that I just can not seem to find answers for and every day it seems when I mention I have this issue I am asked if I have a certain sympton. oddly enough I say yes but yet when I look online for these symptons I find nothing. So I hope to find my answers here =)
I am so glad I found this site, thank you again!
Lady Ann~
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Hi Lady Ann,
:welcomewagon on the forum,do tell us more about yourself and post the questions you have in mind.
Zaini.
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Hi Lady Ann,
Welcome to our site :hiyaboy
We're here to help you find answers to your questions and we are happy to have you!!
:welcomewagon
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Oops let me tell you about myself =)
I am a 34 year old female. I found out about my blood disorder the same day I found out I had Epilepsy. I inherited mine from my father who also suffers from his. At the time I found out about Thalassemia not to many really knew to much about it. All I was told was a type of Anemia so I had been on and off iron pills most of my life. Recently I found out these were bad for us so I have stopped taking them.
I do not know what type of Beta I have but I do have my lab results and no one can really tell me what I have.
I am always tired
no energy
Depressed most of the time and I have a wonderful life besides having fertility issues.
I have a "skin crawl" issue which I was told was a sympton where randomly all over my body I get little tickles or itches constently.
I also seem to get aches and pains thru out the day that come and go and it feels like on my bone.
I have breathing issues. sometimes due to anxiety and other times just out of the blue. and I am not a smoker. My heart feels like it skips beats or I can't seem to get enough air.
These are what comes to mind at the moment. Whenever I give my medical history the nurses usually bring up another sympton that I have so these are just a list of what they either have told me are a sympton or I have read that I do have.
So I am curious if others have any of these symptoms.
Thanks for your time =)
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If you like, I can take a look at your test results. You can post then or send them as a personal message. Much of what you say points to thal minor but seeing the lab results would be more definitive. Did you also have a hemoglobin electrophoresis test done?
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I am going to say no on that test Andy. I am not familiar with it. what does it require and do.
As far as my results here is what they ran
WBC fluctuates from normal to above
RBC 5.71
HGB 11.2
HCT 35
MCV 61.2
MCH 19.7
MCHC 32.9
RDW 16.9
Hyporchromia Slight to Moderate
Microcytosis Slight to Moderate
Anisocytosis Slight to Moderate
Poikilocytosis Slight
Ovalocytes Few
Basophils Few
Target Cells Few
All are Abnormal
I have had a cbc ran a few times in a year and the numbers stay pretty close
Hemoglobin A = 91.8 Low
Hemoglobin A2 = 6.30 High
Hemoglobin F = 1.9 Normal
Ferritin = 62.1 Normal
Iron = 123 Normal
Vitamin b12 = 324 Normal
Folate = 5.9 Normal
I am heterozygous for the codon 39(C-T) mutation says to go for genetic counseling
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Hi! LadyAnn Welcome to the family...... :welcomewagon :welcomewagon.
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The electrophoresis is the test that gives the results as percentages of different hemoglobins, and the results do confirm thal minor even without the DNA test. So many of the symptoms you mention are reported by other thal minors but doctors usually don't associate them with thal. You can learn more about thal minor in the post at http://www.thalassemiapatientsandfriends.com/index.php?topic=1575.0
Has your hemoglobin level always been around 11 or have you had periods when it dropped lower? Do you take any supplements now?
This is something I have been recently asking minors who experience symptoms similar to many of yours and it is something that piqued the interest of one of the top thal cardiologists in the world when I brought it up to him at the Singapore conference. Many of the symptoms that thal minors report are the same as symptoms of pulmonary hypertension (PHT or PAH). It is known that thal intermedias have a very high incidence of PHT and there is a possibility that minors may also have a higher than normal rate of PHT, and the doctor agreed that this may be worth investigating in thal minor. Even mild cases of PHT can cause symptoms and PHT is treatable. To top it off, as it may also relate to you, is that there seems to be some connection between epilepsy and PHT. Ask your doctor if you can be tested for PHT.
There may be some supplements that can help correct some of the deficiencies that are often found in conditions of anemia that are not iron related. Folic acid, B Complex, vitamin E and D (and C for minors), magnesium, zinc, L-carnitine and additional anti-oxidants may be of some value.
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welcome
welcome ladyAnn
Nice to see you here.
take care
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Hi LadyAnn ,
:welcome to the community ...
i hope you will find this community real helpfull ...
soo keep posting and keep asking .. i hope you will find all the answers of your questions here. ...
Best Regards
Take Care
Umair
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Thank you everyone for the warm welcomes =)
Andy, From all the recent CBC's I have done the HGB does seem to stay very close to 11, I am going to check into the other tests and see how I need to go about getting those done. Thank you for your help. =)