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55477 Posts in 5941 Topics by 6281 Members
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This is Thalassemia Patients and Friends,
dedicated to its founder,
Lisa Cammilleri.
(1970-2004)
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Author Topic: British thal minor struggling to cope  (Read 3801 times)
rach_app
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« on: September 03, 2012, 12:16:25 PM »

Hi im a 26 year old with thal minor both myself and my brother carry the trait we dont know any family history as its from my fathers side and we have no contact.
I have been exhausted for most of my life but im starting to find it even more difficult to cope with as I cant do anything without feeling ill, tired or depressed.....How much of this is due to thal minor?

I can easily sleep on weekends for 18hours and still be tired if im at work i will often have a 3hour nap befor an early night which doesnt leave me much room for a life and my partner is finding it very difficult to understand.
I have recently been fainting and had stomach pains to add to the exhaustion and when i was at hospial they told me my billiruben levels were high but as i had thal minor its probably fine! im also getting checked for gallstones. I also have panic disorder/depression since i was around 12.

Due to the fact im so exhausted i keep getting told to take iron but obviously i point out i have thal minor they say well dont bother you will be used to it then, treatment is refused as aparently i shouldnt have any symptoms with thal minor......if thats true then i am at the end of my teather i feel like a walking zombie and am already worring about how i would manage a family with th symptoms i have PLEASE help any advice of support would be welcome Thankyou
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ak82
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« Reply #1 on: September 04, 2012, 11:40:52 PM »

Boom. Im thal minor, british, and feel jus like u. Though im thirty and feel like my gallbladder has kaboomed all inside me. Im awaiting an ultrasound. Never pass a solid bowel movement (if you could see me now!lol) and lots of other issues. I see you as lucky as you have a partner. My fatigue prevents me from finding one and my ex left me for reasons related. Not being able to live up to general expectations.

I would say ditch iron 100%. Become a regular blood donor. Tan at sunbeds (thats my new thing im gonna be on!) Sun exposure seems to help me significantly. Find a good way to increase glutathione (master anti oxidant) this should protect your blood cells. Take folic acid, b12/methylcobalamine, and i guess maybe a good mutli vit. Dont be scared of salt at all (if u crave like i do) but use proper salt like celtic sea salt or himalayan crystal salt as it is unrefined and has all minerals. Listen to your cravings. Cut out refined flours, sugars, crap sugary drinks sweets etc. Eat fruit veg, good meat. Emulsified fat is easier to digest such as mayonnaise if you have gallstones.... Thers a lot to learn. I havent worked out whts rigjt for me yet but this is a random summary. All the best, and appreciate your partner x

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ak82
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« Reply #2 on: September 04, 2012, 11:51:33 PM »

Another good one is transdermal magnesium spray. Go crazy with that stuff. Like 7 sprays minimum on each limb then rinse it off ur hands to get the mild stickyness off. Its great stuff. U in london? Let me know how u get on i can point out some good places to get stuff and some asshole doctors to avoid ;) God speed
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