Can Thalassemia go undetected and worsen over time?

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Hi, I've been struggling with what my doctor described as "severe anemia" since 2015. He put me on ferrous sulphate since then but I've not recovered from it in the 6 months course like he explained. He noticed something weird about my recent blood test (high iron storage and low haemoglobin if I remember correctly?) and now suspects I might have Thalassemia. I read up about this and it seems that it's something a person is born with, but I've not felt major symptoms before 2015. Is it possible that I've had it my whole life and it's suddenly gotten worse?

I know I'm asking this before an actual diagnosis (I have a Haemoglobinopathy screening to do next), but I'm feeling a little paranoid that it might be something more serious and wanted to ask about the possibilities

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  • Posted

    Hello ..why didn't your doc suggest B 12 injections ? I have one every three months, and I do take a daily supplement .Have you read up on your strange condition ??Don't over worry about it .you know that Stress makes everything worse,

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    • Posted

      I'm not sure, he didn't mention anything about b12? He possibly thought the anemia was related to my heavy periods maybe. I've taken the blood test last week so hopefully I'll be getting a diagnosis soon

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    • Posted

      Hello .I thought you had done a "Runner " seems par for the course on these sites. Did you get tested for low B 12, or just a blood count ? I hate waiting for results .I had an MRI scan before Xmas ,results due on 24th Jan . Really does NOT do my stress level any good. Problem is with blood tests ,they only do the select few,that everyone gets, with no specific requests, so ,we usually end up back at first base, Ask, if the doc doesn't mention B 12 Keep in touch.

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  • Posted

    hello selena!! how r u doing now?? has ur doctor finally confirmed what illness u have??have u had other blood tests done??and is it really thalassemia or something else??what's the final conclusion?? i hope u will reply..i am a 24 year old male and in a somewhat similar situation as u and have lots of these questions..let me share my opinion and my story.

    since childhood,i was a perfectly normal kid and no one ever suspected i could have any genetic disease..i never had any pblms and was healthy..there is no news of any of my relatives from father's or mother's family of getting thalassemia..no one's blood reports CBC ever produced any marks which pointed towards thalassemia or carrier..however the confirmatory test for thalassemia trait called hb electrophoresis was not done on anyone..but i could never imagine in my wildest dreams that i probably carried the gene for thalassemia( though i do not suffer from the actual disease)

    Not only that, i have had plenty of blood tests done since childhood for other unrelated causes and none of them produced suspectable results,which could draw the attention of doctors towards thalassemia related tests..almost all the parameters including haemoglobin (hb), RBC,Wbc,platelets,mcv,mch,rdw were just normal like any other child..so the question of whether i had a genetic blood disorder just dies off before it is born

    7 months ago, in october 2018, i had some gastric related pblms and the doctor ordered routine CBC test..i must tell u that my last CBC was done 7 years ago and after that no other tests were needed..anyways,the CBC done in october 2018 was fine EXCEPT THE RBC count...i had normal haemoglobin (more than 13.5) ,normal wbc,normal platelets,BUT RBC count slightly elevated with lower MCV and lower MCH,,which meant that my red blood cells were smaller in size and somewhat abnormal in shape..also it was mentioned that my red blood cells were HYPOCHROMIC which means that under a microscope they looked very pale in colour.. also if u look into ur CBC report,u will find something called RDW factor which means the level of variation of RBC's types..whenever there is some pblm with ur red blood cell production in bone marrow,this factor tends to rise and is associated with some anomalies in the rbc production..in my case,the Rdw was 14.1% which was roughly in the normal range(11-15%)

    at that time,the doctor did not pay attention to these numbers..he said i probably had iron deficiency.

    But due to my health pblms for other reasons,i got my CBC repeated in march 2019 and 6 days ago..on both the occasions,a similar trend has appeared as in october last year..high RBC, low Mcv,low mch, normal haemoglobin (more than 13.0) ,normal wbc,normal platelets,slightly raised ESR

    BUT,an essential point is that my RDW factor has kept on progressively increasing,which indicates that something wrong is going on and it is progressing day by day..in march,RDW was 16.8 and this month(6days ago) ,it was17.8..following the trend of RDW values,i think it has started increasing only since october last year because at that time,it was normal and then increasing progressively now..so i think something wrong must have occurred since october last year simply because,since childhood all of these parameters were just perfect for me..i got abnormal counts since october last year and other parameters have been changing progressively since then to support the fact that some abnormal change has suddenly appeared..

    So,this time i went to another doctor and he sent me for iron,ferratin tests,hb electrrophoresis tests to be done..the resuts came back 2 days ago

    Iron,ferritin levels are normal,, unsaturated iron normal But total iron binding capacity lower than normal

    Finally,in haemoglobin electrophoresis test,it was revealed that i had beta thalassemia trait..which means that though i do not have thalassemia but i am a carrier of it's gene which i must have inherited from one of my parents..

    now,when the doctor saw the report,he said that he had predicted this and that's why sent me for that teat for final confirmation..and he said that there is NO WAY THAT IT CAN OCCUR SPONTANEOUSLY OR ON IT'S OWN..IT IS ALWAYS INHERITED ..he further added that generally males are not the carriers and in his whole medical carrier,i seemed to be the first male carrier of thalassemia.

    His conclusion was that i got this since my birth not just 7 months ago..and he said that i should only marry a purely normal girl (not even with trait)and he further advised me to avoid iron supplements..he said that if hb electrophoresis test showed that i was normal,then i would require a bone marrow test for investigating my blood disorder..FORTUNATELY,he said that bone marrow test is not required for the time being as my condition was already diagnosed..BUT he added a doubtful tone

    having adviced my parents to get hb electrophoresis tests done too, he said that if it turned out that neither of my parents carried thalassemia gene,then it meant that i am NOT a thalassemia carrier and my abnormal blood counts are probably due to some other bone marrow disorder,which would need thorough investigation..i hope that i never have to get a bone marrow test done..i know how painful it is!! i would freak out just before the process started..But,my parents are not interested in finding out whether they are carriers or not.

    Meanwhile, i find this situation extremely mysterious even though a reliable test has confirmed my condition to be a carrier!!

    As i already said,no one in my family has ever been reported to be a carrier or anemic or have thalassemia..only my grandmom died of leukemia..

    plus,throughout my life,my blood tests have yielded usual numbers and nothing which could be suspected as a possible occurrence or indication of any disease..just 7 months ago,i got my cbc and these abnormalities in results suddenly sprang up from nowhere it seems!! my RDW was normal at that time and progressively increasing,which compels me to think that something truly odd happened just 7 months ago and may not be thalassemia trait but some other deeper blood disease that however mimics thalassemia minor..and as time is passing,i think it might be getting worse and worse..and could worsen further as it has already started exposing itself..the doctor said that my thalassemia trait is not going to cause any pblms and by now , it would have already caused me a lot of trouble if it were to do so!!BUT,honestly speaking,i do not think it is thalassemia trait and like u i am having the same question ..."does it progress quickly or suddenly comes from nowher?"..according to the doctor,for the time being,i do not need any treatment BUT i am extremely anxious to know what really happened to me..

    it is a request please tell me what ur doctor said about this disease and it's progress??

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