Hi, I'm new, British and need some advice.

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Hi, I'm new, British and need some advice.
« on: June 27, 2012, 03:51:50 PM »
I'm a 41 year old woman from the UK. I was diagnosed with thal b minor trait when I was about 12 after it became apparent in some other members of my extended family. Initially I was ordered to take high doses of iron by my gp. I stopped taking it after it made me quite ill. My gp told me I was a stupid girl! I ignored him anyway as I found out that iron was an inappropriate treatment. I've always suffered with fatigue, dizziness and migraines as do the other member of my family with thal. We put these symptoms down to our thal, even though we're told its asymptomatic and we just get on with life. Anyway, after discovering a message board discussing thal minor and its 'symptoms' I started taking folic acid. Literally overnight I felt like a different person. Full of energy, no brain fog, firing on all cylinders! I just wish I'd known about foilc acid years ago. The area I'd like advice on is that I have two sons. My eldest has been tested years ago and isn't a carrier. My youngest is just like me; pale and easily tired. I'd put money on him being a carrier. So I went to my gp yesterday asking for him to be tested for thal and was curtly informed that 'we don't authorise tests for genetic disorders that require no treatment'. I explained about the folic acid and how it had helped me and the gp almost screamed at me that I shouldn't be taking it. What i want to know is; would folic acid be harmful to my son if he took it? He's 13 by the way. I do have another appointment with a different gp who is supposed to be a specialist in haemotology about this but I'm thinking is there any point in me taking him if the UK guidelines are 'it's not a problem and there's no treatment' Sorry to go on, but I could've cried yesterday! Hope you can help. Thanks.
   

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Offline Poirot

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Re: Hi, I'm new, British and need some advice.
« Reply #1 on: June 28, 2012, 06:32:06 AM »
Theresa,

Folic Acid should not harm your son - even if he is not Thal minor. But, keep the starting dosage low and see the results before increasing it to normal dosage.

Also, I would add Vitamin E for both you and your son.

If NHS won't prescribe or pay for your blood test, can't you just go to your local lab and order it for yourself - the test is called Electrophoresis.

Cheers

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Offline Andy Battaglia

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Re: Hi, I'm new, British and need some advice.
« Reply #2 on: June 28, 2012, 10:51:57 PM »
I agree. Folic acid is a water soluble vitamin that is universally recommended for all women of child bearing age because it is the most important thing a woman can do to prevent birth defects. It is also normally recommended for thalassemics because it is instrumental in the production of red blood cells. I never hesitate to recommend it for all thals, minor through major. There are actually a few vitamins I recommend for thal minors, as it is important to optimize the red cell production. These include B Complex and natural vitamin E.
Andy

All we are saying is give thals a chance.

Re: Hi, I'm new, British and need some advice.
« Reply #3 on: July 01, 2012, 06:49:30 PM »
Thankyou Poirot and Andy for your replies. I've started my son on a low dose of folic acid and I will try the vitamin E and B complex as well. I looked into having the test done privately; it's not something we usually do here in the UK but it cost about £183, so that's a possibility if the NHS won't do it. Thankyou so much for all your advice; this forum is such a godsend!

Re: Hi, I'm new, British and need some advice.
« Reply #4 on: August 08, 2012, 04:13:51 AM »
Your son does need to be tested as if he is a carrier (whether he needs treatment or not) because when he looks at having children he needs to know the implications of passing on the gene and the potential his children have in being Thal Major.


 

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