Thalassemia Patients and Friends
Discussion Forums => Thalassemia Minor => Topic started by: Kiya on June 28, 2011, 09:12:37 AM
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Hi, I am a new member in this forum. This forum is full of information about thalassemia that i feel so comforted. I have a beta thalassemia trait and my hb is maintained at 11. Though i haven't cared much about myself but i feel worried about my daughter. My 5 yr old daughter also has the beta thalassemia trait along with Celiac disease. Due to both the conditions, her growth was very slow and she was deficient is most of the things such as iron, vitamin D, hb etc. It has been almost 4 months since she was diagnosed as a celiac. After going on a gluten free diet, she is much better now, her iron levels(from 10 to 187 now), vitamin D(from 6 to 50 now) levels have improved drastically. though hb has also increased (from 7.6 to 9.0 now), but i expected it to increase much better.
Is there anyone with similar condition in this forum? I would just like to know how long would it take to increase her hb levels and upto what levels can i expect? She is on a good diet along with iron supplements and folic acid supplements. Also, though her doctor has recommended iron supplementation for another 3 months, i feel it should not create an iron overload for her. Would it be safe to continue iron supplement for 3 more months. She is taking 50 mg elemental iron once in 4 days.
Any help in this regard would be highly appreciated.
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Hi Kiya,
I have heard the combination of thal minor and celiac disease mentioned often in these pages. I do not know if there is any connection, and because celiac is so common that we can expect a certain percentage of thal minors to also have celiac, I don't think we can draw any conclusions. We have previously heard from members who are struggling to get iron levels up because of poor absorption, most likely due to celiac disease. You have done a remarkable job in reversing your daughter's condition and both her iron and D levels are now fine, going by these numbers. Because diagnosing iron deficiency requires the results of several different iron tests, I don't want to say one way or another if she should continue iron at this point. Do you have the results of a recent iron panel? Usually there will be at least 3 different values expressed in these results. Her iron level seems fine from the one number, but the other numbers would provide a more complete view. Looking for TIBC, serum iron and ferritin levels. It may be that the doctor is being cautious and making sure her iron stores are adequate before discontinuing iron, but if the absorption problem is solved, she should now be able to get all the iron she needs from her diet. If you have the iron numbers, I can give you my opinion on continuing iron. By the way, getting her D level up was a key. This will be reflected in all areas of her health.
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Hi Andy,
Thanks a lot for your guidance and opinions.
Doctor has written iron indices for her but she is ok to have them after 3 months at the time of next visit as even TTG test for gluten free compliance is due at that time. She didn't seem to be so worried at this moment to get another prick right again after one set of tests. So, i guess we would also wait and do the tests at that time only. It really feels bad to get pricks after pricks done for a small child time and again. Will hold on till then and keep our fingers crossed. We would also know how her iron serum and hb is fluctuating during this period.
The other facts were that she has been eating goat liver for iron levels so even B12 deficiency was out of question. She was already on folic acid since 4 months so folic acid deficiency is out of question....i mean just for your information.
Thanks
Kiya
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Hi,
Can someone tell me how much time does it take, in general, to increase hb by each point in B-thal minor cases, especially in children?
Thanks a ton
Kiya
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I don't think anyone can answer that question. Most thal minors will find that the most they raise their Hb level is less than a point. Many thal minors are in the 9-10.5 range for Hb and little changes that. Because your daughter is recovering from absorption issues, it may be awhile before you find out where her Hb will lie. It could take anywhere from 6 months to two years to restore iron stores and maintain a stable Hb level. Some thals do respond to natural fetal hemoglobin inducers like wheatgrass and resveratrol, with the latter showing some real potential in recent studies. If you have the results of a hemoglobin electrophoresis test, check the HbF percentage. The higher this already is will give you some indication about whether trying to raise her HbF might have potential. If it is higher than 1.5% it does show some ability to produce HbF.
My personal experience with raising my Hb after severe surgery-caused anemia was that it took 2 years to fully restore my Hb level.
Your doctor wants her to stay on iron for awhile. Because her iron stores need to be re-established and proven stable, I can see why he would want a few more months. I think this is a cautious approach based on her history and is understandable that the doctor would prefer this. She has a long way to go before iron can pose a danger, so staying with the iron shouldn't pose any risk and may continue to help raise her Hb.
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Hi Andy,
Thanks a ton. I really appreciate what you do for people in this forum. We had her electrophoresis done 2 yrs back. At that time, her iron was 32, HBF was 0.4, TIBC was 394 (within range), HBA was 94.4, HBA2 was 5.2. I am not very sure which of these will improve with increased iron levels now.
The blood tests that doctor has ordered for her 3 months down the line are :
CBC with peripheral smear
Iron
ferritin
TIBC
% transferrin saturation
Hopefully, these should give us a better picture. What is your opinion to all this data? How do you increase HBF? Is it related to iron serum increase?
Thanks
Kiya
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Hi Kiya,
Her HbF was quite low (.4%) in her electrophoresis, so I wouldn't expect her to have much ability to increase this percentage. The gene normally turns off after birth but thals tend to produce some HbF to help compensate for a lack of HbA. HbF and iron are not related. HbF is produced by a gene that silences after birth, as the body switched to the beta globin gene. If hers was at least 1.5% I would hope for some improvement in that level. On the other hand, a low HbF in a minor may actually be a sign that her body isn't trying to compensate for low HbA by producing HbF. If this is the case, her Hb level will probably climb more as time passes, as long as her absorption of nutrients is normal. A study I just ran across on antioxidants in thalassemia looked at whether any of them had a positive effect on Hb level. This is not necessarily expected with antioxidants but it was found that vitamin C was the only antioxidant tested that also showed some increase in Hb level. Vitamin C is also useful in iron deficiency because it aids in iron absorption in the gut. I would suggest that she eats citrus regularly and also takes a supplement, either in a multi-vitamin or as chewable C.
Her low Hb has improved once iron absorption was corrected. Her anemia may be more related to iron than thal minor. If her celiac disease is under control, she should continue to improve. I'm sure it can be tricky making sure she gets good nutrition while also avoiding a lot of foods, but I am very impressed by how much she did improve after the dietary changes. It isn't always easy to turn things around with celiac. The tests in a few months will hopefully show continued improvement.
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Hi Andy,
Thanks a lot. I appreciate your tremendous knowledge on the subject. My daughter's HBF (0.4) was from a 2 yr old blood test. It might have got corrected by now, she is 5 + now. I checked my reports and my hbf is 1.4, but my husband's is 0.0 and he is not thal minor. i didn't understand this.
Regarding vitamin C, i do try my best to give her vit C in one or the other natural forms. Also, give her some orange juice everyday (tetrapack ones since it is currently off season for oranges here). But, wouldn't go for any chewables at this moment as she is a celiac and chewables might have malt...
Rest, lets hope for best, next three months will get us more clarity.
Thanks again,
Kiya
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Hi Andy,
Could you please look it up and reply? Sorry, if i am bothering you too much but i am just curious about hbf 0?
Bye
Kiya
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Hi kiya
Because your husband is not a thal minor, he does not have HB F. Fetal hb only appears in the presence of thal (minor through major) and that is why having it present is used as a marker to diagnose thal
Fetal hb should not be found in the body at all, but because in thal there is shortage of adult hb, the body starts switching on the gene responsible for producing fetal hb ( kind of defense mechanism) in order to compensate and help raise the total hb level
So there is nothing to worry about :wink
Manal
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I actually think the low HbF is probably a good sign, because it shows the body isn't stressed enough to turn the gamma gene back on.
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Thanks Andy,
Your comments increased our hopes for better reports next time. Can you send us a link to some website where we can find this entire literature about hb behaviour from pre natal to post birth stage? ...I mean if you have it easily.
Thanks
Kiya
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Kiya,
Perhaps this link will help:
http://sickle.bwh.harvard.edu/hbsynthesis.html
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Thanks Sharmin,
Though i don't have a biology background, but tried to make some meaning out of the link....
Thanks again
Kiya
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I had trouble finding this file, but it suddenly appeared in front of me today. I have just posted with a pdf attachment, Anemia in Children Including Table of Normal Indices, at http://www.thalassemiapatientsandfriends.com/index.php/topic,4087.msg40654.html#msg40654
Table 3 shows normal blood indices from 26 weeks gestation until adulthood. This is a very useful guide when dealing with any type of anemia.
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Thanks Andy. Will surely go through.
Kiya
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Hi Andy,
My dauther is thal major and my son is thal minor . My son is 8 years old . Lately i am observing that his growth is becoming slower than kids at the same age and also his eating habits changed like he does'nt like to eat or most of the time its forced eating . We are not giving any medicine like folic etc to him since his HB is maintained at 11 . He has acquired 619 BP deletion mutation from his mother .
Pls tell me about growth and what precautions we need to take .medicine etc.
regards
MA
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MA,
We hear this often in regards to the appetites of thal minors. I suspect it is related to hemolysis, the breakdown of red blood cells (RBC's) that occurs in all thals, including thal minors. The rate of hemolysis is lower in minors, but the small irregular RBC's produced do not last as long as the good RBC's, so the rate of blood turnover will be higher in minors than non-carriers.
We constantly hear form parents who do not know what to do. What we need to hear more of is from parents who have found solutions to improve the appetites of their children. I would suggest a diet high in antioxidant foods and unsaturated fats and low in saturated animal fats. Cook in vegetable oils only and never in animal fat. Tea, nuts and milk and milk products may also help to stimulate a better appetite. I would also suggest a daily natural vitamin E supplement to help counter the effects of oxidation.
Parents, what suggestions do you have? This problem seems very common, so some of you will have some ideas and suggestions.
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Hi everyone and Andy,
3 months are over and I did my daughter's blood tests. The reports are given below:
HB 9.0 same as 3 months before
Iron serum 43, 3 months before it was 187
Ferritin 31.2, this is done first time
TIBC 341, first time test
%transferritin saturation 12.6%, first time test
Other results of CBC similar to as she always got. She is a thal minor.
When her iron serum was 187, i had given her a diet with lots of goat liver often which increased her iron in 2 months time only from 49 level. After this, since last three months, she was mostly on vegetarian diet along with eggs as she resisted to have liver. So, i thought that she could sustain with healthy veg diet containing lots of greens, fruits, eggs, lentils and almonds etc. She is on a strict Gluten free diet. Dr had also continued with iron supplements and folic acid. Now, these reports leave me completely dejected because it is difficult to make a 5 yr old eat healthy food and less of junk food and then also reports not good. My specific questions are:
1. She is on iron supplements since 7 months now and Hb increased from 7.6 to 9.0. Now, it is maintained at 9.0 since 3 months. Do we have chances of seeing it increasing further or she is stabilizing at this level?
2. Is the iron supplement she is taking acting against her iron absorption? Has anyone ever gone through this?
3. Will she have to again go back to goat liver diet to increase her levels, i know it will not be good in the long run?
4. At such small age, she has long school hours and she doesn't get a chance to take a nap in between, though i try to give her a 10 hr sleep in the night. Is this hindering her HB increase?
My thanks to anyone who could reply to me with his or her experiences.
Thanks
KIya
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Hey Andy,
Please reply to my post. Am completely nervous and out of help and panicked. I am sure your reply will show me some light in the right direction. sorry for being impatient. I feel i will only get some diseases trying to grow up my little girl. I feel so unwell and nervous :(
Thanks again
Versha
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Hi Kiya,
1. There is no way to predict where her Hb will ultimately reach. Thal minor by itself can't be predicted but with celiac also involved, it will depend greatly on how well the celiac disease can be managed. I believe it will probably rise more as she gets older as long as her diet is well managed. This is really a lot of trial and error and patience is needed.
2. I am not in favor of iron supplements in general. They tend to cause stomach bloating, interfering with the appetite. I much prefer diet, and as you saw, a food source (liver) worked best. I would actually suggest stopping iron for a few weeks and see if she cooperates with eating a healthier diet. From her iron tests, her current levels are OK but have dropped and her iron stores seem low, so she does need to get iron in her diet. See the thread at http://www.thalassemiapatientsandfriends.com/index.php/topic,2415.0/highlight,iron+rich+foods.html for a list of iron rich foods. You can see from this list why liver works so well. I am a vegetarian and was able to reverse severe blood loss caused anemia by diet alone. I tried iron tablets and I could not eat because my stomach felt full all the time.
3. Try other foods first and realize it is a slow process unless you are eating foods like liver. It took me six months on an iron rich veg diet before I could work full time again. Since her iron stores remain low, if she is willing to eat liver once in awhile it will help.
4. Her experience is common with thal minors. Many say they could use a daily nap in the afternoon but this is not often practical. I don't think this directly affects her Hb but it will affect her appetite and bodies need adequate rest to grow so the long day will have some effect. I don't know if it's feasible for her to have a nap at school. You might want to talk to the teacher and explain that because of her dietary issues, her energy level is limited, and you'd appreciate it if you were informed if she has any trouble keeping up in school, and also ask the teacher to make sure that your daughter doesn't try to overdo things. It's best to make allies of the teachers and involve them in some way, as this will give them a better understanding of her health and limits and recognize when the fatigue of anemia has set in and that trying to push then is futile.
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Hi Andy,
Thanks a ton for your reply. I am game to your suggestion of not giving iron supplements and get the stores back with diet itself. She has long school hours which adds a little constraint in managing her diet well. But, i am going to try this hard. She is ok to get back to liver and the start has already happened yesterday. Dr has adviced 1 folic acid tablet (5 mg) twice a week. Is this ok? She has also added a b-complex syrup. I did go through the thread of iron rich foods and will try to make use of it.
My dr says that her celiac thal minor patients have gone upto hb levels of 11. That is the levels she is hoping we must also touch , hopefully one day. ???
Thanks a lot, Andy once again. Going through all this, my learning is that we have to take charge of our health and cannot rely on Doctors completely, though i am lucky to have a good doctor.
Thanks again
Kiya
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Hi,
I am back again. This is more related to Celiac and antibodies than thal perhaps. My daughter's anti TTG Iga levels are again very high 291 (0.5 - 20) ref range. they are almost similar to her results 7 months back at the time of diagnosis. She is a b thal minor. My question here is :
This test anti TTG IGa gets all the antibodies in the body rather than only gluten related antibodies. Someone told us that thal minor also could be responsible for antibodies in one's body which might be interfering with the results. Is this true and if yes, what are the facts?
I am struggling back and forth in thal and celiac trying to settle on both the sides...any clue here would be highly appreciated.
Thanks
Kiya
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Hi all and Andy,
If you have any knowledge regarding my query, please do get back.
Waiting eagerly for any reply,
Thanks
Kiya
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Hi Kiya,
I think that the person who told you that was confused with thal major where transfusions add new antibodies to the recipient. What I did find is that hemolysis can interfere with Detection of Anti–Tissue Transglutaminase Antibodies in Celiac Disease, http://www.clinchem.org/cgi/content/full/56/6/1034
Hemolysis is a feature of thal minor and it can actually interfere with detection. There is no mention of false positives, though when it comes to thal minor.
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Hi Andy,
Thanks a lot. We as parents are only worried about the correct diagnosis. My daughter did have 2 bouts of ataxia last year before her diagnosis. We are not sure what is inside her that is not fine. All her deficiencies got corrected since the time we have been on Gluten free diet and growth has been excellent. But, when anti TTG Iga test results came, they were alaming, so we got worried. We have gone super gluten free at our home now. Hoping to get better results next time.
Thanks again for your help. We are lucky to get in touch with you and this forum.
Kiya
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Kiya,
When you list your iron results you might want to list the metrics as well as the lab ranges. From what I can see, transferrin saturation is very low, it is supposed to be around 30% in healthy individuals, while thal minors usually have it higher than that. Ferritin is also very low as well. These two markers are much better to give idea about the Iron storage levels for a longer period of time than serum iron. Please actively address the iron deficiency and the celiac condition and I am sure your daughter will improve. Good luck.
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Hi Kiya
TTG Iga test results being so high show there still gluten in the diet. So good luck with your label reading.
http://www.celiacsolution.com/createing-gluten-free-environment.html
Hope the attached helps.
Regards
Catherine
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Hi im thal major and have coeliac. Ive noticed when i wasnt on diet my ferritin was going down which is great but now im on it its going up.
I dont know if theres anything ic an help u wiht? but i do notice i have a lot of deficiency in vitamins
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Kiya,
When you list your iron results you might want to list the metrics as well as the lab ranges. From what I can see, transferrin saturation is very low, it is supposed to be around 30% in healthy individuals, while thal minors usually have it higher than that. Ferritin is also very low as well. These two markers are much better to give idea about the Iron storage levels for a longer period of time than serum iron. Please actively address the iron deficiency and the celiac condition and I am sure your daughter will improve. Good luck.
Hey thanks,
Will definitely try to actively take care of her iron deficiency. Experience teaches us a lot of things. Will take care.
Thanks again
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Hi Kiya
TTG Iga test results being so high show there still gluten in the diet. So good luck with your label reading.
http://www.celiacsolution.com/createing-gluten-free-environment.html
Hope the attached helps.
Regards
Catherine
Hi Catherine,
Thanks for your advice. I guess we were pretty sure about her diet and also her continued improvement in terms o f vitamin deficiencies and hieght and weight etc....misled us and we never thought about her getting glutened until results came. Trying hard again for another 3-6 months to make sure that she is completely safe from gluten. Hoping for best. Thanks for the link, will definitely check.
Regards
Kiya
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Hi im thal major and have coeliac. Ive noticed when i wasnt on diet my ferritin was going down which is great but now im on it its going up.
I dont know if theres anything ic an help u wiht? but i do notice i have a lot of deficiency in vitamins
Hi eesha,
Thanks for writing. I am sure being a thal major, you are struggling much more than me. It would be great if you could share about your diagnosis, symptoms etc. will help.
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Hi Kiya
As the vitamin deficiencies and height and weight have improved least know you are on track with caelic disease.
As your child is at school she maybe getting gluten foods outside the home. Kids love to share food.
Regards
Catherine