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Author Topic: Study Finds Thal Minors do Have Symptoms  (Read 229168 times)
Zaini
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« Reply #45 on: February 18, 2010, 11:34:53 AM »

Hi Jmarie,

I won't be surprised if your doctor is annoyed,because doctors who don't know much about thal minor themselves and go by the books,do get annoyed when patients try to contradict them,because for them thal minor is asymptomatic,of course this is a big deal,hb of 8-8 is not just two points low,its pretty low,and since its effecting your quality of life,it is a big deal,and chronic low hb can lead to more and more iron absorption through the gut,which in turn can get over loaded in organs in the long run.Do you have any records of your hb before you were actually diagnosed?

Try to read through the forum as much as you can,this will help you in asking questions when you go see your hemo,good luck .

Zaini.
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SFTYGAL
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« Reply #46 on: February 21, 2010, 09:00:13 AM »

Its so nice to get this info and yes thal minors have symptoms!!!  My daughter is thal minor she definitely has symptoms, bouts of fatigue, enlarged spleen, etc.  From this forum I have her taking Folic Acid, Vitamin D and Wheatgrass. 

She is working hard right now trying to get a basketball scholarship but goes through episodes where she is really fatigued seems that growth spurt or illness triggers issues.  After reading posts have doctor checking her B12 levels as well.

Should a thal minor take iron?? 
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Zaini
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« Reply #47 on: February 21, 2010, 11:50:42 AM »

Hi.

Welcome on the forum, thal minors should not take iron unless it is confirmed that they have iron deficiency,and it can be confirmed by a panel of tests called iron studies.

Hope this helps,

Zaini.
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cshells
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« Reply #48 on: February 24, 2010, 10:48:00 PM »

I have a Dr appt on March 12 for my new-to-me daughter with her ped doc.
First, is there any (and I quote) accredited site stating that B Thal minors have symptoms beside the one paragraph at PubMed? Even the blood doc we saw in Portland at the Children's Hospital told the ped doc that she wouldn't have any symptoms. She feels that they're wrong and I would like to have any info possible before we walk in.
Second, is there specific tests I should request done?  or request results already done?
Thank you so much for what I already know. Problem is I know so little
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Andy Battaglia
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« Reply #49 on: February 25, 2010, 11:36:54 AM »

There has been very little study of thal minors and what there has been has been inadequate. The conclusion of this study was that more study is needed. I really think thal minors need to be studied but differentiation between minors by Hb level and other factors is necessary.

I doubt there is anywhere you will find more information about thal minors than at this site, but doctors will consider this anecdotal. This shows how important it is to be proactive and help yourself, because you will find very few doctors who know anything at all about thal minor. It's sad, but I know far more bout thalassemia minor than 99% of the doctors on earth. What is even sadder is the fact that most doctors become arrogant and assume they know better, simply because they are doctors. I don't care how good a doctor is in general, because if they have no training or experience with a subject, they really don't know anything more than anyone else about that subject.

Ask for the full results of the various iron tests. It is difficult to say if she needs iron supplements without the complete information. (Fe sat end TIBC hi).

The best you can do is to learn as much as you can and use trial and error to see what helps your child.
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Andy

All we are saying is give thals a chance.
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« Reply #50 on: February 25, 2010, 12:45:17 PM »

Lack of information about thal minor is always such a problem.  Because thal major is so severe, people often downplay the effects of thal minor.  When my son's hemoglobin drops to a level where he is ready to be transfused I often feel for him, and begin to think that he must be exhausted.  I rarely stop to think that my hemoglobin is that low all of the time, his hg is that low only for a matter of days, most of the month he is far higher.  Definitely, constant low hemoglobin affects the body and ones mood.  During my second pregnancy I was barely able to cope with my fatigue as my hg decreased to 7.  My spleen also increased in size during that time.  Most of the time I do quite well fortunately, but I feel for people who have constant low hemoglobins due to thal minor when they are met with apathy from the medical community. 

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Sharmin
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« Reply #51 on: March 02, 2010, 06:19:43 PM »

Hi. I'm 22 years old and was diagnosed with thal minor 2 years ago. I also have a lot of the same symptoms talked about here. I am often very tired and rely on energy drinks to get through a day at work, which i know isn't healthy. I get migraines,tightness in the chest, agitated very easily (my doctor had me on anti-depressants for a while), and i also get sick very easily. my biggest problem is the energy though, and constantly being tired. I try to explain it to people so they don't think i'm just being lazy, but i think some believe i'm making it up. I too, have had no luck with doctors. My doctor at the time told me I had thal minor, then she said for me to come back in a week because she needed to research it more. When I went back to her office, I had to wait 3 hours, only for her to go in, print off a sheet from wikipedia about thal and then pass it to me and tell me to read it...then she left. That was about a year and a half ago and I haven't been to a doctor since, all of my information about thalassemia came from wikipedia and sites like these, this one being the most informative that i've found.
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Andy Battaglia
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« Reply #52 on: March 02, 2010, 06:52:39 PM »

Hi Keisha and welcome,

It is very frustrating that most doctors will give no respect to thal minor as a real problem. Everything you mentioned are things that thal minors regularly report to their doctors, but for the most part their problems are ignored. I am beginning to believe that doctors will be the last to know when it comes to thal minor. This leaves patients pretty much to themselves to try to find any relief. I do think that a good diet and supplements can help, and because once again I see anti-depressants being prescribed to a minor I want to emphasize something that can help many people including thal minors. Vitamin D deficiency is extremely common and it also leads to many health problems, but also is a direct cause of depression, and is overlooked by most doctors. I have been dealing with Seasonal Affective Disorder (SAD) for many years. This happens during the winter when the days are short and sunlight is never intense. Living in upstate New York and being of Italian descent, I need a lot more sunshine than I can possibly get. A few years ago I started taking what was then considered a high daily dose of D (1000 IU) during the winter months. It did help a bit with the winter depression, as I no longer felt the desperation I usually felt in the winter, but I still didn't feel great and felt like I was holding my breath all winter, waiting for spring to arrive. Last June I asked my doctor to test me for D. Even though I was taking a daily supplement and was also making an effort to get sun, my level was only 19. Normal is a minimum of 30. I was stunned. I had been taking D for 5 years and had not gotten anywhere close to normal! I bumped my dose to 2000 IU daily and I did feel a little better, but still I knew it wasn't right. Finally, I found 5000 IU caps and started them. For 3 weeks I took 2 daily. I was getting at least 60,000 IU weekly. At last I could feel a difference. After a few weeks, I felt like the dose had done the job and dropped back to 5000 IU 5-6 days per week. For the first year in so many years, I have gone through winter feeling normal. I haven't had that desperate feeling all winter and my spirits are noticeably improved.

It's a simple blood test and it can reveal a problem that afflicts many people. If your level is not at least 30, try supplementing your vitamin D. Even if it is over 30, it may be of benefit to supplement. I was reading an article this past weekend that suggested the recommended levels are far lower than they should be. Vitamin D is responsible for the proper absorption of many other nutrients, especially minerals and when the D level is low, it leads to many health issues.


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Andy

All we are saying is give thals a chance.
Prets
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« Reply #53 on: March 24, 2010, 09:44:40 AM »

Hi,

If i'm physically active a few days in a row, I seem to 'empty' completely. Then I need complete rest for a few days before I get better again. Otherwise my body health acts up in many ways. (Regardless of what my mood is).

Most people tend to get tired at the end of the days work, Eat and sleep well, and they're fully recharged the next morning.

This has happened yet again, and I am in bed for the most part. The IBS is acting up again and I ended up with terrible pain and I couldn't eat for days. Even my body temperature goes upto 100 sometimes if i don't rest. But as soon as i lie down and keep myself comfortable, the temperature will come back down to 98.3 which is my normal level.

Initially we fear infections, but I also cannot take antibiotics past the first 1-2 days. I react to them badly and we have decided to stick to IV doses if ever needed henceforth.

I am wondering if any symptomatic thal minor here - has a medical solution to this?  A simple case of exhaustion turns into many more problems and I end up feeling miserable only because I have to be tired ALL THE TIME and bed rest.


The only way i know to escape this issue is to turn lazy and do nothing in life.   :-)   Which I personally hate and avoid, and its not practical either.

Any thoughts on this? I take all my supplements and eat healthy gluten free. I manage light exercise too.

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Symptomatic Beta Thal Minor.
tigerlily
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« Reply #54 on: April 02, 2010, 09:06:50 AM »

Hey everyone,

just yesterday I discovered this community! And I'm totally shocked. I have Thal minor, just as half of my family does, and of course we've always been told that it doesn't matter at all. However, my brother and I always have a strong lack of concentration as well as quite a need for sleep, and my father gets some kind of dizziness/vertigo nearly on a daily basis. He's been having this since his early teens, and the doctors tried every test possible on him. Concerning his blood, they always said that Thal minor is just a different-looking sort of blood. He's always wondered about his vertigo and fatigue. I think it's incredible that doctors keep saying we don't have symptoms when we all have them! I just told my father about this community, and he was fascinated. Do you know anything about vertigo?

@ Preety: That really sounds bad! Unfortunately I am new to the whole subject and don't know much...

I'm very glad to have found this community. Finally we understand what our fatigue/dizziness/lack of concentration is about... Thank you all so much for writing here, it's really a great inspiration!
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Prets
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« Reply #55 on: April 29, 2010, 12:08:55 PM »

@ tigerlily,

about vertigo, it could be an inner ear problem - an ENT specialist may be of help. I think they have exercises for it, if it is really something to do with the ear. What about low BP/Low blood Sugar? Eye problems?

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Symptomatic Beta Thal Minor.
Imken
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« Reply #56 on: May 21, 2010, 02:28:16 AM »

Hi, thanx for the report Andy, I will use it to inform our Dutch patiënts.
My GP thinks he knows more of thal then I do, but I know he doesn't. So he wasn't very interested in helping me when I came to him in the beginning of my pregnancy. But I know how to speak for myself and don't take no for an answer.
I know a lot of people don't speak up to their physicians, what results in bad treatment. So I hope with this article more minors are going to speak up and ask for the treatments they deserve!
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Imken

Take good care of yourself
shirmh
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« Reply #57 on: June 16, 2010, 12:21:37 PM »

Here is the direct link to the study:

http://www3.interscience.wiley.com/cgi-bin/fulltext/119388776/PDFSTART
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PixieDust
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« Reply #58 on: July 22, 2010, 05:33:13 AM »

The full study report is now attached to this post.

Thanks Andy,

Happy that three doctors are from Sri Lanka, at the same time unhappy because If you go to a hospital and say your a trait and feeling lethargic all the time... they pay no attention  Undecided
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bcsides2000
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« Reply #59 on: February 20, 2011, 11:11:29 PM »

This is my first post on this site.  I've know about my Thal Minor since late 2002.  I found out because my first 2 daughters who were born in 2000 and 2001 were on WIC and the lady at the WIC office kept accusing us of not feeding our kids food with iron in it.  I let the pediatrician now about this and he ran some blood tests and gave them some iron supplements in the mean time.  After the tests came back he told us he wanted to test my wife and I, along with my two daughters for some more stuff.  So, it came back that I and my two girls had Thal Minor.  Of course he stopped the iron supplements immediately.  He did a lot research on it, but was able to find too much about it.  I was just glad I had something to tell the lady at the WIC office.  LOL. 

Anyways...here I am now...12 years in the Air Force.  Probably the only thing until recenlty that the my Thal Minor has made problematic for me was I had to get a waiver (which took many tests and many months to get) to switch from an air traffic controller to be a navigator.  My doctor then didn't know much more than any other doctor before knew.  So, now I'm at another bumb in the road that hopefully I can get some help from my doctor here to get over.

I'm a horrible runner, but I've always blamed it on technique and not running enough.  Well, I've spent the last 5 months training to improve my 1.5 mile run time for my fitness test.  I had been doing my run fine during training, but when it came to the test I could not keep up.  I'd have to say my biggest problem is I get really short of breath after the first half of a mile.  I also get headaches about an hour or so after everytime I run.  Of course I get other symptoms, but I don't know if they have anything to do with running. (i.e. fatigue, slight jaundice, etc...)  I will say that supplements do help, but of course I haven't been taking any in a while.


I'm just mainly happy I found this site.  It is great to know there are others out there that have the same issues that I have.  I'm really excited that there was a study done on our condition.  I hope this can lead to more intensive studies to help us all out.  I look forward to learning more from reading on this site and even chatting with you all.

Ben
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