Hi Everyone, both my son and I have Thalassemia

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Offline anaheraharmony

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Hi Everyone, both my son and I have Thalassemia
« on: March 12, 2010, 03:15:35 AM »
Hi All!   
I am taking this opportunity to introduce myself and my son; we both have been diagnosed with Thalassemia.  I had been diagnosed with this disorder back in 1996.  There had been prior blood tests taken in 1993, 1994, 1995 but the Thalassemia was not prevalent at that stage.  How that is possible is beyond me, but that is was happened.  Now upon diagnosis in 1996 my doctor cheerful told me that this was not anything to worry about, and be grateful at the fact I will never get Malaria. So, life went on I continuously suffered headaches, fatigue, dizziness and all the above.  But, no one told me that it had to do with my Thalassemia.  And I myself didn’t think that having Thalassemia was of any importance, because it had never been addressed to me in that manner.  Now, in the mean time I have since had 4 children, of the 4 children 1 has been diagnosed with Beta Thalassemia.  The only reason why I found out he was also a carrier happened by accident.  Back in 2008 I had a very bad miscarriage, at the time I had to be rushed to surgery.  During the surgery I had apparently lost a lot of blood.  In the recovery the doctors were taking bloods from me and one of the doctors had a familiar look on his face of confusion, which over the years I got used to.  Almost 6hrs after surgery I was released and sent home.  Within 20min of arriving home, my heart had stopped and I was definitely having an out of body experience.  Fortunately for me the doctor who was looking after me at the hospital lived across the road.  He, thank goodness bought me back to life, and I was rushed to hospital.  According to the Doctor if he had of known that I was Thalassaemic I would never have been discharged so soon.  So because of his findings by sheer accident, he insisted that I have everyone tested for Thalassemia.  All 4 children and my partner were tested, but 1 unfortunately has the disorder.
Both my son and I have been to the Thalassemia Unit here, and once again the doctor said there was nothing to worry about.
Well, I beg to differ.  I still suffer with all the known symptoms for Thalassemia of my apparent disorder, but as the time is going by the severity of the symptoms has worsened.  My worse worry at the present time is the blackouts that I have more frequently, I use to be able to time them,  but they now happen without notice and last longer.  The Headaches have become unbearable, and my diet is definitely in need of adjustment.  I have tried to research all I can possibly research in regard to my diet, and I think I am doing a terrible job at it.  My bones now feel like they are broken, fatigue is regular, headaches, very bad lower back pain and now I have what is called xanthomata.  This is apparently another factor that has to do with Thalassemia.
Unfortunately, every Doctor that I have seen outside of the Thalassemia Unit,  admittedly say, they are not familiar with the disorder – and their first reaction is ‘go for blood test’ I am over the blood tests.  I am over looking like a pin cushion and bruising so bad I look like I been hit by a truck.
 I am sending it out there, and hoping to get some positive feedback.  I need help and guidance and a definite support group, I am all alone here.
Looking forward to meeting you all!

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Offline Manal

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Re: Hi Everyone, both my son and I have Thalassemia
« Reply #1 on: March 12, 2010, 04:56:06 AM »
Hi anaheraharmony  and welcome to the site,

What you have been suffering and your doctors' reply is very common. People who carry the trait may have some symptoms (fatigue, palpitation, shortness of breath, numbness,....) and others may not have symptoms at all.

Many of the symptoms can disappear when following a good diet, excersing and having essential supplements like folic acid which is a must for all thals), B-complex.

It is advised too to check you vitamin D levels becase it could be responsible for fatigue, feeling down, and muscle spasm.....etc, majority of people happen to be deficeint of this important vitamin.

I also advise you to read in the section of thal minor and the section of nutrition and supplements, you will find a lot of good information

By the way what is your HB level??

Pleae feel free to discuss any issues

Manal

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Offline Andy Battaglia

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Re: Hi Everyone, both my son and I have Thalassemia
« Reply #2 on: March 12, 2010, 06:05:19 AM »
Hi anaheraharmony and welcome,

Every single thing you mention, we have heard repeatedly from thal minors. Your doctors have not known much about it, so they did not tell you what most doctors who think they understand thal minor would have told you. It is very common for doctors to just dismiss thal minor and say it has no symptoms. They are wrong. I don't say it out of arrogance. I say this because I have heard from hundreds of thal minors, who all have various symptoms that are a direct result of their condition. Thal minor is actually a widely ranging condition, where some patients feel fairly normal, and others have numerous problems with their health, and often, there is nothing minor about the problems. I am especially concerned about thal minor women who go through pregnancy, because this can be an absolutely horrible experience for some minors, while others breeze right through pregnancy without a problem. I do feel this can be affected if doctors only understood thal minor and what can and often does happen during pregnancy, with the end result being miscarriage far more than anyone wants to acknowledge, and sometimes danger to the mother's life. With proper nutrition and supplements and the necessary monitoring during the pregnancy, I feel that many miscarriages could be avoided. Although it is recognized in thalassemia major and intermedia, thrombosis (blood clotting), caused in thalassemia by the hypercoagulable state, is also an apparent problem in thal minor. This leads to a diminished circulation of blood between the uterus and placenta, which can lead to miscarriage, and yours is not the first case I have heard of recently where it appears the placenta detached from the uterus, leading to miscarriage and hemorrhage. We have heard from far too many thal minor women who have miscarried to believe there can be any coincidence. This is really happening and it is virtually ignored by the medical profession.

Since the doctors don't know and there is little likelihood that this will change in the near future, we have to take it on ourselves to educate, inform and help thal minors help themselves. For starters, I think every thal minor should take folic acid, B complex, natural vitamin E, vitamin C and unless you get daily sunshine year round, vitamin D, the most important vitamin which comes from the one thing that brings life to earth, the sun. The fact that this has been long ignored is rapidly being corrected as researchers learn just how extremely important vitamin D is to humans. The bodies of thal, minor through major, go through stresses that deplete the body of vitamins and minerals to some degree. A good diet, high in antioxidant foods is very important, as oxidation is the cause of many physical problems.

You should be taking a calcium/magnesium supplement, along with daily vitamin D, in a dose of 2000-5000 IU daily. I would suggest starting at 2000 for a week to two weeks and see if you notice any difference in muscle pain and fatigue. I cannot even begin to tell you how different you will feel once your vitamin D level gets up to adequate levels. I have been through this for years and was taking vitamin D for years at 1000 IU daily. It helped a little but not enough. I bumped it up to 2000 IU late on 2008. I was tested in June, 2009 and my level was only 19, even after years of supplementation. In October, I started taking 5000 IU twice a day. After about three weeks I felt such a change that I reduced my dose to 5000 IU daily and that seems to be working. For the first winter in many years, I have not suffered from Seasonal Affective Disorder (SAD), which is a syndrome caused by lack of sunlight and vitamin D, during the winter months. This is particularly bad for darker skinned people living in northern climates. During my 10,000 IU daily treatment, I talked to one of the top thalassemia doctors about vitamin D and what they have found with thals. He told me that they found that giving 50,000 IU at a time was the best way to reverse deficiency. I am not a thal but I do suffer from D deficiency, which is found commonly in today's world. We just do not get enough regular exposure to the sun. Over the past couple years, my understanding of the importance of D has grown, as has the body of research regarding it. There are things you can do to improve your health and it will take time and no one will tell you that you will ever feel completely normal, but you can be better. With the way you describe the state of your bones, I have to highly recommend Cal/Mag and vitamin D. Calcium without D is almost useless and magnesium is always needed in balance with calcium, as they control the heart's electrical system, in addition to being necessary for bone growth.

Please do read through the thal minor section and the diet and nutrition section. You can help yourself once you know what can help.
Andy

All we are saying is give thals a chance.

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Offline anaheraharmony

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Re: Hi Everyone, both my son and I have Thalassemia
« Reply #3 on: March 13, 2010, 09:38:59 AM »
Hi Andy,
Thank you for your very quick response.  I read and understood what you were advising, and totally appreciate that.  To date I have been taking supplements for the past 6 weeks.  As for my diet, well that is trial and error at this time and moment.  Because of my cultural background, we eat a lot of red meats and shell fish, but since moving from New Zealand to Australia I have had to change that dramatically.  I would say for the past 4 years I eat only white meats, and I do eat a lot of vegetables.  Now, after reading a few of your informative notes I have found I need to change some of these vegetables.  But that is all good, as long as it helps me get a proper balance.  As for the dietary supplements and vitamins please find as follows: Vitamin D 2000IU daily, Zinc 220mg daily, Vitamin C 250mg daily, Megafol 10mg daily, Mega B  1Tablet daily, Calcium, Magnesium with Vitamin D -4 daily, Vitamin E 1000IU daily.
Now, I did read what you had to say in regard to Vitamin D, and today I changed it to 4000IU.  Also, as for getting enough sun, unfortunately I am one of those people that burn’s quite quickly.  I have never been one to stay in the sun long at all.
I will definitely keep reading and learning more and more here.  There is so much information here, and I am very grateful for your help.
If you have any other suggestions I will happily receive it.
Once again thank you!

 

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