Thalassemia Patients and Friends
Discussion Forums => Thalassemia Minor => Topic started by: lampert on October 06, 2010, 03:18:10 AM
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Hi everyone!
I just found out yesterday that I have beta thalassemia minor/trait. For months now I have been feeling extremely weak/tired and dizzy and been having difficulty concentrating and remembering things, which worried me a lot as I am only 25 and have been living a pretty healthy lifestyle (eating well, exercising - although not recently as I haven't had the energy for it :( ).
I went to a bunch of doctors and have had what feels like a million blood tests (which have been v difficult for me as I have a problem with needles) and, after believing that I had iron-deficiency anemia, finally found out that I have this condition. When my hematologist told me, I was relieved to finally know what is going on. Although it was still pretty frustrating as he said that the thalassemia doesn't explain the symptoms I'm having. This doctor is supposed to be one of the best - he is even head of the hematology department of one of the best hospitals in the city - which just goes to show how misunderstood thalassemia is.
My question is, should I continue taking my iron supplements? I did a ferritin test and the results were that I had 33 ug/L (normal range is 13-150). I know it is within range, but isn't it in the lower end? My hematologist also told me to take folic acid.
Any advice you can share would really be appreciated!
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Hi,
Welcome on the forum :) being a thalassemia minor you should not take iron supplements unless its proved that you have iron defficiency,and how can you be sure of it ? by doing a panel of tests called iron studies,just ferritin is not reliable enough to know if you have iron deficiency,and since your ferritin is with in normal range,i'll strongly advise you do iron studies before taking iron,as iron if taken excessively can be overloaded in the body in long run.
Doctors make this mistake often enough,even some hematologists,do you know what is your hb level? because if your hb lrvrl is low doctors just assume you need more iron which is not necessarily true.
Yes folic acid will definitely help,along with a good B Complex,and if you can get your vitamin D checked coz most ppl are deficient in D unless they go out in sun A LOT.Which is seldom the case,so if you are deficient in D it will contribute to your feeling tired and not energetic.
Hope this helps :)
Zaini.
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Thanks, Zaini!
The hemoglobin from my latest CBC was 8.9, but I've got it up to 10.3. It fluctuates a lot. I'm a girl btw :)
I'll get the vitamins you suggested :) I live in a tropical country, so there's lots of sunlight, but I work in an office all day which doesn't allow me a lot of sun exposure.
Thanks again for the advice and for the warm welcome!
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Hi,
Your case is typical example how doctors often been confused in diagnosing whether it is iron deficiency anemia or thalasseemia minor. I felt to say something to you regarding your problms.
1) check your iron level whether it is normal .. as Zain said there are whole lot of tests for detecting that.. especially as you are a girl anemia is very much possible -- if diagnosed positive -- start treating it properly by haematologist.
2) Your tiredness is not normal at your age. Loss of concentration is somethign you should take care of -- medically.
3) you are thalassemia trait. Folic acid is good for you.. but if your Hb level is normal (10.3 is nothing to wrry about for a girl) you dont need any treatment at all -- only continue to have healthy diet and balanced diet. If you can get a habit of checking Hb level at regular interval like once or twice in a year as health check (because thal traits are prone to b anemic). and smile bcoz thal traits are not even "deffective" it's only a condition of blood.
dont mix up point number 3 with others. point number 1 might b the cause of point number 2 , but that too not necessarily.
PLEASE DO NOT confuse thalassemia minor with weakness, loss of concentration and memory problem. I am thal trait and do not have any such problem ever... nor does many of us have. That is only wrong impression abt thal trait we have in some of our minds -- no medical or established background is thr.
iron deficiency can cause the symptoms u mentioned .. but thr might be other causes behind those symptoms too. so be health cautious and visit different specialist to get their opinion and get diagnosed correctly.
AND , i m repeating, thalasssemia minor people are completely NORMAL. being thal trait is just a reminder to be careful during pregnancy as Hb level can go down.
Cheers
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3) you are thalassemia trait. Folic acid is good for you.. but if your Hb level is normal (10.3 is nothing to wrry about for a girl)
Is that really true,i have heard many docs say that too,that hb of 10,10.5 is ok for females,but believe me i feel like crap with that hb,and my personal opinion is that it must effect your body in the long run,having hb below normal levels i mean.
Zaini.
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Zaini,
WHO (world health organization) says 13 is the lower level of Hb for male... but more than one hematologists laughed when they saw my Indian Air Force medical test report saying "unfit due to anemia (12.8)"
Many doctors told me that "i can even show you that most of us doctors and staffs and other fit people dont have Hb above 13" ... what he meant was 13 is a standard but not a magic number for our healthy body.. i have seen my dad most hardworking , better physic than his and my peers (and also more handsome than me) and never feeling dizzy or weak .. in fact, thanks to God, he almost never fell ill.. He is 55 now and his Hb is something in between 11 and 12 . Worth mentioning, i got to knw abt my thal trait thing 2 months ago and i think dad also has it.
Just think about Zinedine Zidane ... he has struggled a lot -- both mentally & physically -- and in the end on the ground -is he unfit at all ?
Well , personal opinion-- i believe a hematologist was correct in saying -- for male thal trait Hb under 9 - start taking flic acid+iron ... under 6 -transfusion ... and above 9 healthy diet and exercise to make and keep it better
personal fact -- i was used to be at 12 Hb , but i have taken erythropoetin injection Eprex (10000 International unit once a week 4 times) to increase it -- and now my Hb level is in 14 within two weeks --- but I dont feel anything better or worse... I am the same me .. by physical and mental health.
I would like to mention one more thing -- we shud not generalise all thal traits as we also inherit many other factors from our parents ... so it really depends on the individual thal trait how is the combination working . Rest -- research is still ongoing on the inter-relation.
so dont bother ... life is beautiful ... laugh and cry and live it up :)
cheers
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I have a similar question.
In Dec. 2010 I spent two weeks at Mayo clinic getting tests to figure out why I kept fainting, was sooo tired, and was having trouble with my memory. It was decided that I wasn't getting deep levels of sleep because of Restless Legs Syndrome (RLS). And my severe exhaustion meant my autonomic systems were shutting down. (Thus the fainting).
I was sent home and told to take iron pills and salt to raise my super low blood pressure. The iron pills were to raise my ferritin levels (which were 17), and the cause of my RLS.
Out of curiosity, I had my kids' ferritin tested and they were all low as well. So I put the whole family on iron.
But their pediatrician protested, and had my 7 year old tested for thalassemia. Turns out we are all alpha thal silent (not so silent!!) carriers. The pediatrician told me not to take any more iron, nor give it to my kids because of the thalassemia.
What do you think? We are still having big sleep issues in our house. Should I take iron? What could it hurt?
I'd go and have more tests done, but hubby lost his job and our health insurance, so I am trying to solve this issue in the most cost effective manner possible. But in the meantime, I am sooo tired and starting to faint again.
Thanks for your advice.
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You cannot go by ferritin level only. A full panel of iron tests needs to be run to determine iron deficiency.
With that said, I will add that you should tread carefully when it comes to iron supplements. Over the past year, we have heard from many alpha thal minors who have been diagnosed as iron deficient. The numbers are making me wonder if there is something about alpha thal that makes one look iron deficient when it is not present. Of course, this is anecdotal evidence, but it has made me re-think this issue. Why are so many alpha thals being told they are iron deficient? I suggest caution with iron. If you feel that your family's nutritional need for iron is being met by diet, you may want to avoid added supplements. Long term iron supplementation can cause an iron build-up in the body, as there is no natural way for the body to remove iron. In addition, when the hemoglobin level is low, the body will naturally absorb more iron from the diet, so caution is advised when adding more iron. I would suggest making sure there is adequate iron in the diet and that vitamin C foods are eaten along with iron rich foods to improve iron absorption. I would also suggest a folic acid supplement be taken daily by all alpha carriers in the family, as this is more likely to raise your Hb than iron. Folic acid is the main treatment for alpha thal and all alphas can benefit by taking it. It can also be found at low prices, which does help when the budget is tight.
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Andy,
:-)
I have not posted in ages now, just an update.
I am still taking iron drops, albeit very irregularly. Not yet tested my hgb and ferritin as my IBS troubles me regularly. And i dont want to get tested when i am not well otherwise, as the stress, dehydration, etc may affect my results.
Quite often when i'm very stressed, some problem shows up, and then after a few weeks, it gets back to normal by itself. But I do feel a LOT better since I last posted.
Hopefully I will get checked soon. :-)
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Thank you for your response, Andy. That is very helpful.
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@ Zaini and others,
My personal experience says that low hemoglobin does indeed make a difference to fatigue levels.
Whenever I get tested after complaints of severe tired feeling, my hb is always below 9.5. But when I get routinely tested without any serious tiredness issues, its always above 10.
About iron deficiency - again I have noticed - with supplements I have better hb than without it. My reports are rarely clear about whether i am iron deficient or not, every other person has a different opinion.
@ Paisley -
I also have a sleep issue, so I take melatonin pills - they don't alter my timings but I get sound sleep, and I don't feel faint like i do when i'm sleep deprived.
i take pediatric iron drops on a trial basis, and I don't take them daily. Will know if they help, if i keep checking regularly.
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The Update
Finally went to see Dr. Patricia Giardina in NYC. She agrees with me that my daughter's and my MCV is too low to be caused just by being an Alpha Thal silent carrier. So she ran DNA tests, both for deletions and sequencing on Alpha, Beta, Gamma and Delta. She says it might be something really rare. We should get the results this week. I am so excited.
Meanwhile, she says that we are not iron deficient and recommended stopping any iron supplementation. So we have. The result is that our RLS is kicking back up again. However, we have been taking melatonin, and for now that seems to be helping more nights than not.
Will check back in again when we get our results.
Thanks to all for your support and suggestions.
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Hi everyone,
I'm new and this is my first posting. In fact, I'm so glad I found this forum as I really gained a lot of information about Thalessemia. I'm Alpha thal trait and same goes to my husband. We just lost our beloved baby boy at week 33 of my pregnancy. He suffered from Hydrops Fetalis.
I'm curious to know that since folic acid is the main treatment for thal, what should be the best dosage of daily consumption. I took 5mg of folic acid daily during my pregnancy. Normally after breakfast.
Thanks & Regards
Valerie_Nouvel
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Hi Valerie,
I am so sorry for your loss.
1-2 mg folic acid daily is sufficient when not pregnant. 5 mg daily is a good dose when pregnant.
Let us know if you have questions or experiences to share.
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Hi Pretty
Have you been tested for Fructose Malabsorption this can be a cause of IBS and also cause problems with malabsorption of iron and other minerals.
I had my daughter tested for this last week and am now waiting on the results.
Regards
Catherine
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Hi Catherine,
I was never tested for malabsorption, but I was in terrible health and very low weight. Like eating food etc was of no consequence.
I am totally off iron now, and my hemoglobin is the same/better. So it makes sense to go without it. The iron itself causes my IBS which long term leads to malabsorption. I Also get IBS when I eat too much junk or if I stress a lot. Otherwise I'm doing fine.
I take some appetite pills (only quarter), and I have gained about 3-5 kilos. :-) I'm still underweight but hopefully will be fine soon.
Exercise is what helps me most - my stamina is getting slightly better. If this solves my fatigue issues, then I will forget I have lower hemoglobin! :-)
One more update on daily migraines - they're fatigue/ related, and caused by eye problems too. If I exercise my eye muscles daily, the migraine frequency reduces.
Keeping my fingers and toes crossed! :-)
One thing that may help you daughter - try to have only mild foods for some time. It seems to gives the tummy time to settle and stop over reacting. Keep a diary of foods to see what makes her uneasy and try to eliminate it for some time.
I was off wheat/gluten/fats for 3 years - gluten/fat used to keep me very sick, same time I quit iron too. Now my body is adjusting and I can eat everything in small amounts. I still cant digest too much food, especially fats, I take enzyme pills with it.
All the best for your daughter. :-)
Hi Pretty
Have you been tested for Fructose Malabsorption this can be a cause of IBS and also cause problems with malabsorption of iron and other minerals.
I had my daughter tested for this last week and am now waiting on the results.
Regards
Catherine