I am new!

I was told 40 yrs ago that I have Thalassemia Minor and that there are no symptoms.  I went to the doctor because I had symptoms.  They had me going to the hospital at least once a month and sometimes twice a month taking blood and doing tests, sending blood samples to other hospitals and this continued for about a year.  One day my doctor gave me a piece of paper stating that I had Thalassemia Minor, that there were no smpmtoms, and people from Mediterrainean descent had this hereditary disorder and that I should never take iron because doctors would think I had iron deficient anemia and to go live my life.  I have tried to do that but have not once come in contact with a doctor who has any understanding of Thalassemia Minor and how it effects my life. Quite frankly I knew very little until I ran across this web page.  All I knew was I am different and how it effects me.
Do you have to go to a major medical center to get help?
Is there really any help?
There are times when I really strugle.

Welcome to the site.

There are a lot of members who have said Thal Minors do have symptoms. You are NOT alone. You can visit the Thal Minor section at http://www.thalassemiapatientsandfriends.com/index.php?board=4.0 that will give you more information on Thal(Minor) and what you can try do to manage your health.

Also, one of the most visited and helpful thread in the Thal(minor) section ( http://www.thalassemiapatientsandfriends.com/index.php?topic=2769.0 )  has a copy of study done on Thal(Minor) and shows that they do have symptoms. You can print that article and take it with you to the doctor. Hopefully, they start listening.

Regards.

You will learn much more about thalassemia minor here than you will from most doctors on earth. It's sad, but it's a fact that most doctors derive their information about thalassemia minor from outdated information that was never based in fact. And the fact is that many thal minors do have symptoms. You can learn a lot here and maybe find some ideas to help your own health. If you get another blood test, make it a test of your vitamin D levels. Anything below 30 needs correction and will make a difference in many ways.

 

Thank you so much Narendra and Andy for your response.  I really appreciate any information that can help me to manage my health myself. 

Welcome!

Hello to all
Through my reading here I see that thals are prown to get osteoporosis, I have it.  I did a search for osteocare but only found it in the UK.  I also have IBS and Artal Fribrulation so I try not to take more supplements than necessary.  I found another product containing:
 Potassium (as Citrate) 250 mg;
Protein 1g;
 Vitamin K (Asorbic Acid) 120mg;
Calcium (as MCHC and Amino Acid Chelate; 5/1) 1200mg;
 Vitamin D3(Cholecalciferol) 600IU;
Vitamin K (Phylloquinone) 120 mcg;
Vitamin B6(Pyridoxine HC) 20mg;
Phosphorus (MCHC) 500mg;
Magnesium (as Amino Acid Chelate) 400mg;
Zinc (as Amino Acid Chelate) 20mg;
Copper (as Gluconate) 2 mg;
Magnesium (as Gluconate) 5mg;
 Microcrystaline Hydroxyapatite Complex (MCHC) 4000mg;
 Horsetail Standardized Extract 7% 50mg;
Boron (as Amino Acid Chelate) 5mg;
 MSM (Methylsulfonylmethane) 25mg
 Alfalfa Powder 10mg
Kelp 10mg
My concern is primarily the last six ingredients. What are your thoughts on this product or is Osteocare available in the US  Thank you for your help

Welcome Sunshine,

Hope you find all your answers here.
 

I want to tell you a few things-

1. Some thal minors are very symptomatic.
2. Thal minors can sometimes also be iron deficient.
3. IBS can interfere with absorption of iron/nutrients/supplements,  so you need to keep that in mind too.

Perhaps others more knowledgable can detail you more.

Sunshine,

It's all safe.

Microcrystaline Hydroxyapatite Complex (MCHC) 4000mg;  Good source of sulfur, necessary for joints.
 Horsetail Standardized Extract 7% 50mg;                      One of earth's oldest plants with many good properties, including making bones stronger.
Boron (as Amino Acid Chelate) 5mg;                             An essential trace mineral needed for bones.
 MSM (Methylsulfonylmethane) 25mg                            One more natural compound often used for joints.
 Alfalfa Powder 10mg                                        Mostly chlorophyll, which differs from hemoglobin only by the substitution of magnesium for iron.
Kelp 10mg                                                       Seaweed. Good source of Iodine, essential for the thyroid.

Just one addition to my comments. MSM is usually made from animal sources, so for vegetarians, it is not appropriate.

Thanks Preety and Andy for getting back to me.  I have so many questions.
I wish I had the knowledge and understanding of Thal that some of you have so that I would know what to look for or what to ask for when I do see my Dr. HBC, CBC what are they what should they be, what should they be for me?   I don't know any of this.  How do you find out If you have one deleted gene or two?  How do you know if you need a transfusion?  I have had many times in my life when I have been so tired it took all my energy to breath. When I say I have Thalassemia it is just dismissed as if it is nothing. Are there any suggestions as to what I should ask my Dr.
Thanks again for all your replies

Sunshine,

A CBC is a complete blood count and would tell you various different things about your blood. This would be a good idea, as you would learn your hemoglobin level and would also reveal if there are any other levels that aren't normal. This is a help in determining thal status, and whether or not another test, the hemoglobin electrophoresis is warranted. As I said before, I would also recommend a vitamin D test. Deficiency is incredibly widespread, even in sunny parts of the world. I would suggest starting with these two tests.

When I was diagnosed 35 years ago, we were able to find one other person in the western part of the US with thalassemia.  It took me the first 15 years of my life to find a doctor who was capable of diagnosing me, and when he did, he told me I had symptoms and described many of the things that are known today to be thalassemia related.  Since that doctor, I have never found another doctor who understood.  Now, millions? have this problem, and, it seems doctors who understand are just as hard to find.  For whatever reason thal's have to deal with a challenge that puts us constantly in the position we have to defend ourselves and stand up for our rights, I do not know.  It is really wonderful that I found this site and people who understand.  It doesn't seem to matter so much that doctors don't understand when there is a place like this, so full of life, and people who care.  I highly recommend you use thalpal for your strength, encouragement and education and don't let people who don't understand make you feel bad.  Being a doctor does not mean the person knows it all.
The very best to you in your journey with thalassemia, OldThalGal

Thanks everyone for your encouragement and information.  It is really comforing to talk to people who understands and don't tell you its all in your head, there is nothing wrong with you. This site is also educational and I am so thankfull I found it.

Good morning to everyone.
I am sorry to be such a bother but,
I really want to know what Thalassemia I have.  I think it would make it easier to understand what is going on.  I have read about Deta Thal, Delta-Beta Thal, Delta-Beta Thal Minor, Delta-Beta That Intermedia, Delta-Beta Thal Major. What test do I ask for to find out which one of these I am?  The information is very confusing.

A hemoglobin electrophoresis test would help determine your thal status, but to find the exact nature of your thalassemia, a DNA analysis would need to be done. This would give the specific mutation or deletion of the beta globin gene.