Thalassemia Patients and Friends
Discussion Forums => Thalassemia Minor => Topic started by: samdanish on December 30, 2008, 04:39:25 PM
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Hi I'm from the UK and and Im currently 38 weeks pregnant and have moved into a new area so my blood test was redone even though I had a blood test done at 11 weeks at my old hospital. The first result for the HB electro screen says A+ A2 normal pattern (No Hb S detected).
I got my new test results today. The second report from 2 weeks ago has written hb A2 2.1% HB F 0.7% and there are some comments saying there is possible alpha thal and/or iron defiency. No evidence of common variant or beta thalassemia. Partner testing recommended/serum ferritin levels.
Is it possible the first blood test could be wrong? I did also have a blood test done at 28 weeks at my doctors and they had my results for 3 weeks before I moved and would have in theory called if there were any problems?
My husband and I are of Pakistani descent but I'm hoping based on the first blood test that I'm just suffering from an iron deficiency. The midwife did do another blood test today and said she's going to check my serum ferritin levels before we get my husband to take a blood test.
That leads me to my next problem-when I told him on the phone said he didn't want to have a blood test! Aargh anyway any help or advice would be appreciated!
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I don't know if this is also relevant
1st test 1/7/08 HB 13.2 ref range 12.0 to 16.0
2ND test 16/12/08 HB 11.2 ref range 11.5 to 16.5
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Hi Samdanish,
Alpha thalassemia carrier status is very difficult to diagnose unless a DNA analysis is done. Your tests show alpha trait or iron deficiency as possibilities. Alpha carrier state is often mistaken for iron deficiency because hemoglobin levels can be lower than normal. You can read more about the carrier state of alpha thal at http://www.thalassemiapatientsandfriends.com/index.php?topic=1772.msg14793#msg14793
If it is alpha thal carrier state, it poses no danger to your health. However, and this is why it is absolutely essential that your husband also be tested, when two alpha thal carriers have a child, there is a possibility of a more serious state in the child and even a potentially fatal consequence if the baby inherits 4 alpha genes. (I do not believe this is possible with your current pregnancy because a problem with the baby would have most likely been observed by this point). If you are found to be an alpha thal carrier, any children should also be tested for further reference when they are older so they can know to make educated choices about having children of their own some day.
As the head of a group with a primary mission of educating and spreading awareness about thalassemia, I have to constantly preach the importance of testing and that to not do so when there is a possibility of danger to your children, is irresponsible. This group is full of parents who wish they had been armed with the proper information before having children. Your husband needs to understand that by testing, he may be protecting the next generation and generations to come. It's just a simple blood test so there is no reason to not have it done.
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Hi Samdanish ,
:welcomewagon to the family , i hope you wil find this community realy helping, caring and ecnouraging, as it is ... feel free to ask or share anything you want to share ...i hope you will get a good response and answer of our concerns/questions, its your own forum so dont hesitate to ask wat ever you wana know about ...
Please stay in-touch with us ...
Best Regards
TAke Care
Umair
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Hi and thank you for the replies! I will find out in two days the results of this new blood test then take it from there. I also spoke to my husband-he is basically freaking out about having blood taken and says I'll have to knock him out first which I've told him won't be a problem lol.
Sam
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Samdanish,
Welcome to the website. What are your MCV and MCH results?
Better have your husband get tested to know his status. If he has nothing then you need not worry. Try to convince him.
Good luck.
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Hi Jade and thanks for the welcome. :)
For the first test MCH was 27.5 and MCV was 81.6. Results for the second test MCH was 23.7 and MCH 73.7.
Sam
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Hi Sam,
Welcome on the forum,A lot of Pakistanis carry thal genes,i don't remember the exact numbers now,i am sure your husband will get ready to be tested,please keep posting and tell us about your test results.
Zaini.
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Hi Zaini, my mum was saying the same thing as you-Inshallah everything will be okay and even if I do carry the gene then hopefully he doesn't.
The midwife did ring today though about my test result but I didn't get to speak to her! She told my dad the result came back and it shows I have an iron deficiency and not to worry as these things happen. She was going to get the doctor to write out a prescription for iron tablets which I should take. I do want to speak to her myself though to ask about the thalassemia. I rang my husband to tell him about the message and he now thinks he definitely doesn't need a test.
I then got a letter in the post this afternoon from the hospital the midwife sent my blood sample to and they've written I need to get my husband to take a blood test ASAP so they can complete their investigations! I rang them and spoke to someone about what my midwife said and she said I will have to take the iron tablets and my mdwife should take another blood sample to confirm it was an iron deficiency. If they can't confirm then my husband will definitely need to take a blood test.
I'm pretty confused right now but hopefully I can get a bit of clarity when my midwife rings me back!
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Dear Sam,
I hope that your husband will agree to have a blood test. I also hope that everything turns out to be okay with your child. It is always good to be equipped with knowledge.
Right now, as you are 38 weeks pregnant it is essential for you to stay calm and take care of yourself so that you can be healthy yourself and have a healthy baby. Will the midwife be collecting blood to do a DNA analysis?
Please keep us posted and I hope that everything goes well for you.
Sharmin
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quote:
"The second report from 2 weeks ago has written hb A2 2.1% HB F 0.7% and there are some comments saying there is possible alpha thal and/or iron defiency. No evidence of common variant or beta thalassemia. Partner testing recommended/serum ferritin levels.
Results for the second test MCH was 23.7 and MCH 73.7."
Maybe the MCH and MCV results have led to the conclusion of a possible alpha that trait.
The two results differ may be that's why they cannot say for sure whether you are iron deficient or thal minor. Let them continue their investigation at the hospital. Try to convince your husband to go for the test. It is better to be informed. Identifying thal trait can at times be quite difficult.
Men at times resist such endeavours. They do not want to know. You will need to do some convincing,
Good luck.
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Dear Sam,
I think you should contactwww.ukts.org (http://www.ukts.org) That's the United Kingdom Thalassaemia Society, maybe they can help you with your question and advice a good doc.
It's also important to try to stay so calm and relax as possible.
Best wishes from the Netherlands, Dore
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Hey Sam
Dore's suggestion is an excellent one. Definetly you will have specialists there to give you a final answer
manal
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Good luck with contacting UKTS. I don't know anyone that they've ever responded to. Perhaps you can pretend you're a representative from a 4 star hotel. Maybe then, they'll acknowledge you.
Seriously, if you want contact info in UK to direct you where you can get properly tested, I can help you. Send me a pm if you need a contact.
I will say that from your tests, it is impossible to determine a thing because of the wide variation in the results. (They make no sense. Wild swings like this are more likely to do with a faulty test than any other explanation). However, if the low results were an accurate test, then the possibility of alpha thal trait is there.
I would recommend a third Complete blood count (CBC), an electrophoresis, and a complete iron studies panel testing to be done. It is possible to have both iron deficiency and alpha thal trait so this needs to be sorted out before more iron supplements are taken. DNA testing will be the ultimate determination of your status.
And now a message for your husband. You will find as you do have children that these little fears like not wanting to be poked with needles soon vanishes. I used to have trouble with the sight of blood, until my then 8 year old son fell off his bike, smashing his mouth and breaking some teeth. It happened right in front of me and there was my son, mouth covered in blood and screaming. There was no time for me to be sick at the sight of blood. There was only time to act and pick him up and get him in the house so we could clean him up and assess the damage. A great dentist later fixed up his teeth and all was well. But this was a turning point for me. After that, I knew that to be a parent is to rise above the fears etc because you have no choice. I also had much trouble with needles after being hospitalized for 18 days with IV needles in me the entire time, a pic line in my shoulder and constant pokes with needles around the clock every single day. I couldn't even look at a needle after this for some years. Until I met Lisa and began talking to other thals. My little fear seemed meaningless in comparison to what thals go through regularly. Because I have a severe thyroid disorder, I had no choice but to be regularly tested which requires a blood draw. I decided that I would make myself watch the blood be drawn each time and I did it. What surprises me now is that it ever bothered me because it is actually a very simple thing. You can also overcome your hesitation about being poked with a needle and believe me, when you do have kids and they do have to be regularly poked and inoculated, you will wonder why you ever thought it was a big deal. It takes once to overcome it as long as you make up your mind that you're not going to let little fears run your life. Get tested and your mind will be eased. You will know whether or not you are a carrier (6% of Pakistanis carry beta thal and alpha thal carrier is common in most populations where beta thal is found). Once you know, you will be sure if it's safe to have children without genetic counseling. Please don't proceed blindly. It will be your greatest regret if it turns out you are a carrier and it results in the birth of a child with problems. Don't let this happen. Information is power and you need this power in your life so you can proceed with the confidence a parent needs.
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OK,
First of all I dont know of it is a good tip, so lets see (wait) what the others will say.
You could contact the Whittington Hospital in London. This is there website http://www.whittington.nhs.uk/default.asp?c=6662&t=1,151 Doctor Shah helped me in the past. And I met doctor Davis in autumn (at a Dutch conference). He seemed to be a good doc.
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Hi guys-just wanted to thank you all for your replies and concern! It's been a great source of comfort to me getting your opinions and support. :)
l
I just wanted to also let you know that Andy's message to my husband actually got through to him and that my husband had a day off yesterday and that I dragged him to the outpatients clinic to have a blood test. He was making a big fuss lol but the main thing was it's been done now! The nurse said we will be contacted with the results so I will keep you updated! I'm still waiting for my midwife to get back to me so I can speak to her about my results but I'm praying my husband is fine so my results are irrelevant!
Thanks Andy I owe you big time for your message lol.. :)
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Dear Sam,
I am glad to hear that your husband agreed to the blood test. I pray that his blood tests reveal that there is nothing to be concerned about. In the meantime take good care of yourself:)
All the best,
Sharmin
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Best wishes with the results and also with the birth. You must be about due. I'm glad to help. Having 5 kids, I've learned a lot about what parents have to go through with their kids, and there's many things you just can't get around so you just learn to do them.
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Sam,
I am glad your husband agreed with the test. I really hope that the blood test coming back with good results.
Best wishes, Dore
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God Luck Sam
manal :goodluck :goodluck :goodluck :goodluck :goodluck
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That's a great news Sam :hugfriend wish you the best with test results and the birth too,please don't forget to post the good news :) .
Zaini.
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Hey guys just wanted to let you know I rang through for my husband's blood test results and the nurse I spoke to said he's in the clear! She said he's got nothing that showed up in the results and it came back A+A? Anyway the main thing is she said he does not any trait so even if I do it will have no effect on the baby. :)
Still waiting for him btw lol-my due date is Monday so let's see! Anyway I wanted to say thanks to all of you for being so helpful. It's really helped me a lot so thank you. :)
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Heey, that's very good news!!! (I am not a expert of thal so I have no idea what a+a means.) I hope you are feeling well and that all will go well. And please let us know when the baby was born and the name :flowers :flowers :flowers
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That's a great news Sam, if your husband doesn't have the trait your baby is safe,but he/she can be the carrier like you if you have the trait,so get him tested for it,so you know if baby is the carrier.
Zaini.
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Dear Sam,
I am so so so happy for you!!! I wish you all the best in your future. I wish you a healthy delivery and your baby a healthy and happy arrival. Please let us know when the little one arrives.
Love,
Sharmin
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Thanks guys! I'm going to have a another blood test once I finish my course of tablets and I intend to get the baby tested whenever he decides to come!
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Good luck :goodluck
Zaini.
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Hi guys, sorry it took me so long to come back but just wanted to share with you that our son Saif arrived safe and well after being 12 days overdue. i had a bit of a nightmare labour and ended up with a emergency c section hence my coming back here late! I spoke to a consultant about the alpha thal as well and he has advised me to get him tested closer to the time he starts thinking about starting a family etc.
i'm going to try and upload a photo for you as well-fingers crossed it works!
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Dear Sam,
Your baby is sooooooooooooooooooooooooooooo cute :kissy :kissy :kissy
Congrats dear :hugfriend
(http://i175.photobucket.com/albums/w148/nickithebrat/congratsonyournewbabyboyformyspace.jpg)
Zaini.
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Congratulations Sam, Saif is beautiful!!!!
Thank you for sharing the wonderful news and picture with us :)
Wishing the little cutie a lifetime of happiness and good health!
Love Sharmin
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Aaaaaaaah, such a cute baby :) Congratulations! :flowers I wish your son a good, healthy and happy life! Best wishes, Dore
p.s. This is what we eat when a boy has been born in the Netherlands:
http://cache.virtualtourist.com/1/948221-FOODTRADITION_Beschuit_met_muisjes-Netherlands.jpg
Information:
http://en.wikipedia.org/wiki/Beschuit_met_muisjes
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Congratulations Sam, how beautiful he is :biggrin I am happy that everything went well, enjoy your baby dear and wish you both all the happiness in the world
manal
Dore
The dish looks ymmy :biggrin
manal