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Thalassemia Patients and Friends and thalpal Ā© A. Battaglia 2018





54908 Posts in 5834 Topics by 6080 Members
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Author Topic: Introduction and request for help  (Read 178 times)
Polly58
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« on: January 07, 2019, 06:05:59 AM »

Hi

My name is Polly. I'm 58 years old and first had problems with my blood at 13. I was told I anaemic and given iron tablets. They made me so ill.

At 17 I was diagnosed with thal minor. I was sent to see a haematologist who it turned out already knew my paternal aunt.

Over the years I have struggled with tiredness and constantly catch ever virus around . When I get a virus I get it much worse than anyone else and it goes on much longer.

Over the last five year I have been ill and tired almost constantly from November to March. Viruses are usually upper respiratory tract.

At the moment I am too I'll to work after having spent Christmas stranded abroad because of gastro enteritis and a chest virus. Although I finally got clearance to fly I am not fit to work. I am so tired, achy and the sore throat is as bad as it was twenty days ago.

In addition I also have lots of food intolerances ( including gluten and onions) and dyslexia.

All these problems seem to have got worse over the years almost like my body is worn out. There is so much I want to do and can't. I love swimming and from being 18 years old I have tried to swim regularly. I find I need at least two days off between sessions and feel exhausted the day after a vigorous swim. Even walking any distance tires me.

Has anyone else found that the effects of thalassemia minor have got worse as they have got older ?

I've been in touch with my GP at home and will go to see him when I get back but he has told me that I am the only patient he has with the condition and basically he does not how to help .

At the risk of sounding like I am moaning, and yes I know there are people far worse off than me, I really cannot continue like this. 

Any suggestions gratefully received

Thank you
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Andy Battaglia
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« Reply #1 on: January 07, 2019, 04:57:33 PM »

Hi Polly,

Have you had your vitamin D level checked? If not, ask your doctor about having it tested. It is the most common deficiency and low levels will cause your immune system to be weaker and you will also suffer more from fatigue. I am not a thal carrier and I take a dose of 50,000 IU vitamin D once weekly and it has helped me quite a bit. I started this after talking to one of the top thal doctors around and he told me that they had little success raising the D level of thals until they went to the high weekly dose, so I decided I would try it after years of unsuccessfully raising my dose high enough with lower daily doses.
I would also recommend that you take zinc daily for your immune system and that you try a sublingual vitamin B-12 tablet daily, to see if it picks you up at all. I would recommend 2500 mcg B-12 daily.

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Andy

All we are saying is give thals a chance.
Polly58
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« Reply #2 on: January 18, 2019, 06:59:14 AM »

Thanks for the information Andy

My GP has done blood tests and tells me that my blood is normal for me (109) and the red cellsl are small but again normal for me.

He says my inflammation levels are up but that is not surprising given that I have been ill.

He is referring me to a haematologist but also suggesting that I may have ME

I have not tried any of the supplements you suggest as I would like to see what the haematologist has to say first

In the mean time I hope to get back to work next week but not really sure I am fit to do so
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