Thalassemia Patients and Friends
Discussion Forums => Thalassemia Intermedia => Topic started by: Manal on November 06, 2009, 01:54:54 PM
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Hello everyone
Just an update for my son and some questions too.
I did a CBC yesterday and results wereas follows:
Hb: 7
Hematocrit: 23% (has increased)
Red cell count: 3.55
MCV: 65 (increased)
Leucocytic count: 6,600
Platelets: 237000
Biliruin: 1.8
All kidney and liver functions are normal
More than a month ago, i did the TSH and was a bit high than the normal, 4.5 and the range is (0.3- 4.3), so the doctor ordered a full test for thyroid and the results were:
Free T3: 3.66 (2.5-5.3)
Free T4: 0.8 (0.9-1.8)
TSH: 1.803 (0.3- 4.3)
So the TSH is back to normal, thanks God but the Free T4 is now a little low than the normal, should i be concerned or it is aminor difference. Andy could you please comment on this
On Sunday i will be visiting the doctor but last month, his weight and height was normal for his age and also the rate of growth was normal too.
Concerning the hydroxyurea, three months after we started it, his Hb reached almost 8 (actually it was 7.9) then the following two he had several infections and the Hb went down to 6.5 again due tothe infection.
Now he has been fine from mid of September, why the HB hasn't gone up again?? Why?????????
I am so frustrated because any time he can geta coldnow (due to weather changes) and the the HB will fall again.
It is as if i am up the stairs but i am can not reach the top, just standing in my place and infections have no mercy :wah
Andy
Ahmad is taking 350 mg daily (17.5 per kilo) now of hydrea, do you think the dose should be increased though i prefer not to exceed the 20mg per kilo as recommended by the Iranina studies to be a safe dose with no complications
manal
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Manal,
You could bump the hydroxyurea up to 20 mg per kilo but not higher.
Has he had any scans yet? Ferriscan is available in Egypt now and I highly recommend it. Before any other thyroid analysis is made, I think iron load should be assessed. Iron affects the glands quickly, so this is an important factor. Even though his ferritin has held low, we learned once again at the conference, that in non-transfusing intermedias, scans need to be done because ferritin is not an accurate measurement of iron load.
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Hi Manal,
It is good to see his hg begin to increase again. I hope that it gets back up to 80 and beyond soon, and that he stays safe from infections. Remember, he has been at an age where he will tend to get every cold and infection out there - but then he will stop getting sick so often because he will already have been exposed to most of the common infections.
I was going to mention what Andy said as well, be sure to check his glands for iron as the ferritin is not a very good measure of iron overload in thal intermedias.
Hugs to Ahmad :hugfriend :hugfriend
Sharmin
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Thank you Andy for your reply.
When we were in Singapore, i discussed doing ferriscan for him with some doctors (including his doctor) and they told me that starting the age of 10 i can go for the T2* and the ferriscan.
When i meet his doctor on Sunday, i will repeat asking for the scan.
But what does a low free T4 may indicate? And is it that low?
manal
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Thanks Sharmin :hugfriend
Is there a test to measure iron overload in the thyroid gland?? Or we evaluate only the liver and the heart??
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Manal,
I think that it is a good idea to measure the heart and the liver, but I think that mri can also measure other glands in the body. Dr. Wood will be doing some tests for Lil A measuring his pituitary gland and his pancreas. I wonder if looking at the pituitary would be helpful because the pituitary affects thyroid levels as well.
Perhaps some chelation at some point may be required - depending on the results.
Sharmin
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T4 tests free thyroxine, so a low test may indicate a need for further evaluation.
In a non-transfused patient, a liver iron scan will give the first indication that correction by chelation may be needed. If gland scans are available, they are a very useful tool, but the liver scan is where it should all start.
This involves another of the questions I posed to Dr Wood. At what age should scans begin? The new protocol is to begin one year after transfusions begin. The children are sedated, but it has been found that iron begins to build almost immediately after transfusions so monitoring begins one year later. Yes, this does mean two year old kids are now being scanned. I think with intermedias who do not transfuse, that scans should also be done to see if excess iron is being absorbed from the diet, as this problem is far more recognized these days.
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may Allah bless ur son, Manal................
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Thanks Keep Smiling
Manal
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I have visited the doctor, she agreed to increase dose of hydroxyurea to 20mg/kilo. Also we increased the L-carnitine again to 5 days per week instead of 4. We will see how things will go after this change in dose
Concerning the scans, the doctor said that he won't need this before he is 10 years and didn't seem annoyed about the slight decrease of T4. She is more concerned about having a normal TSH, but any way i will repeat these tests next month
Generally he is good except that the spleen is 6.5cm enlarged (hope the increase the dose of hydroxy will help supress the spleen). On the contrary, the liver size has decreased so much,it is only 1cm enlarged, we never had this small number before
My son these days love to play football and do wrestling with his friends, i am so scared he would hurt his spleen and he does not seem to understand to avoid close contact :wah :wah
The good thing is that his height increased 1 cm since our last visit which was a month and half.
Generally he is active, thanks God
manal
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Manal,
please do not be scared at all and let him enjoy his life and do what he likes.
Otherwise, he will feel different.
Lena.
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Yes Lena, i agree.
I just tell him every now and then without stressing and that is why he doesn't seem to care. I do not stress at all because as you said i don't want him to feel any different but at the same time i can not help being worried. But better me than him
Thank you my friend :hugfriend hope you are enjoying your day
manal
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I understand your being worried but you'll be able to find a way to handle it.
And yes Manal, I am enjoying my day-- today I started translating Naguib Mahfouz. His book is "hadith al sabah oua al masaa" and as always there is a lot of arabic atmosphere in it. (although only non-Arabs can talk of arabic atmosphere and its magic--for the Arabs this atmosphere is part of their lives.)
Take care,
Lena.
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This is for Manal and Sharmin,
About the thyroid and pituitary glands..
I am a thal minor but I have not yet tested my DNA. I am very symptomatic too. Always unwell with something.
I am hypothyroid, and I also had a pituatary microadenoma for a few years, that was treated with pills. In some cases the two can be related. I am sorry I dont know the medical details of how it all works.
My concern always was that i felt iron made me very sick, though my ferritin was always 10. Hemoglobin is also usually 9.5.
But around the time i Stopped taking iron on a trial basis, the pituatary problem became normal and I was able to stop the medication. My ferritin and Hemoglobin are still same.
I also posted on another place about diabetes. I think i am concerned if any extra iron in my body may hurt or cause my organs to function abnormally.
Another thing i noticed, many people who have hormonal problems, often have more than one. Sometimes my pancreatic hormones are out of range, other times we check my cortisol, etc. Maybe they are all inter related at times?
From what i understand, its always better to have a regular hormonal evaluation too, to see whatever health issues we can prevent.
(I am not a doctor so forgive me if i dont make sense sometimes. :-\ )
:grin
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Lena
This is a great book. I have read, but i really enjoyed i more when i saw the T.V series that was produced some years ago. It had more of this magic you are talking about. I will check it is available on CD, i will senditto you
Good luck with the book, Naguib Mahfouz's novels seem simple but very deep in their meanings. In his novels you can feel the atmosphere of the alleys, the houses, people and places that he talks about
manal
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Preety,
Actually the decision of taking iron pills should not be taken by the doctor unless a full iron studies are done. If these studies showed iron deficency, only in this case you will find that iron will be helping your body and will be also reflected on the hemoglobin. By taking iron in this case, you are correcting the iron deficiency anemia not the thalassemia trait.
If you didn't have iron defiecny, so these iron pills were wrong to take because they harm the body by being overloaded in the body organs (liver, heart, glands,...). Having a low hemoglobin too, adds to this problem because when the HB is low, iron is heavily absoarbed from food in the gut ( a way the body defend itself) . So you end up having iron absoarbed from the gut in addition to what is added from the pills. All this iron can be stored in the organ making them function improperly. By the way, low ferritin does not show this iron overload in organs, it is seen only in scans.
As for the hypothyroidism, i observe that a lot of minors have a hypothyroid gland, i don't know if there are any studies done on this or not (you can hardly find studies on minors anyway)
Hope this helps, please feel free to ask anything :wink
manal
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I understand your being worried but you'll be able to find a way to handle it.
And yes Manal, I am enjoying my day-- today I started translating Naguib Mahfouz. His book is "hadith al sabah oua al masaa" and as always there is a lot of arabic atmosphere in it. (although only non-Arabs can talk of arabic atmosphere and its magic--for the Arabs this atmosphere is part of their lives.)
Take care,
Lena.
Lena,
Are you translating it in English or in Greek?
Zaini.
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Hi Zaini,
I'm translating it from Arabic into Greek. This is the fourth book I translate into Greek and I hope there will be many more in the future. (the fifth has already been decided).
Lena.
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Wow !! thats awesome Lena :hugfriend .
Zaini.
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hi Lena,
nice to know that u r translating Najeeb into Greek,
one of the books of Najeeb Mehfuz has been awarded a Noble Prize. will u plz tell me the book name?
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Keep Smiling,
http://nobelprize.org/nobel_prizes/literature/laureates/1988/press.html
in this address you can find the nobel prize release for Naguib Mahfouz.
It is not one book of his that won the Prize, it is for his entire work that he won the Nobel Prize for Literature.
Lena.
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Thanks Lena.................very much!!
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Yesterday i had a a visit at the doctor after i did a CBC. This CBC is done after 25 days from increasing the dose of hydrea. Nothing different than the previous one except that the Leucocytic count has decreased. We can not tell whether this decrease is because we increased the dose or because my son is having cough and runny nose (no fever), so another CBC will be done in two weeks. I observe too that the HB is same though the hematocrit has decreased. The new readings are in bold
Hb: 7..........now 6.9
Hematocrit: 23% (has increased) ....................decreased to 21.4%
Red cell count: 3.55...............................3.30
MCV: 65 (increased) ...............................65.1
Leucocytic count: 6,600..........................4,900
Platelets: 237000....................................231000
Biliruin: 1.8..............................................2
Reticulocyte count is now 3.2%
The bad news is that the spleen is 8cm enlarged, i am too concerned about this. I hope it will reduce a bit ( i know that cough help in enlarging it too and he has been having cough for a week now). I don't know why hydrea is not supressing the spleen, i get the feeling that it is not allowing the hydrea to work properly :huh :huh
The good news is that the doctor allowed me to do the ferriscan but again i wonder how i will convience my son to sit in a closed tube for 30 minutes alone without any single movement and with the sharp sound the machine emitts
Manal
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Manal, :hugfriend
I really feel or you,i am sorry Ahmad's hb didn't increase this time,i hope it will next time.For Ferriscan ,you might need anesthesia ? I am afraid i can not think of any other way,i am sure we have members who have done ferriscan on young children,i hope they'll be able to tell you about their experience.
Zaini.
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Manal,
I hope that Ahmad's spleen decreases in size soon, an enlarged spleen can certainly bring down the hemoglobin. It would be nice if his hg would increase so that it is closer to 80.
The ferriscan should not be too bad if you prepare him. Lil A has had numerous MRIs and they are not too bad. If you make it like a game, he may be happy to cooperate and not move. He will receive earmuffs to reduce the sound. I usually sit in a chair next to the machine (with earmuffs on as well). The technician is usually very good about talking to the child while he is in the machine.
The technician will have him lay down on a bed and then slowly move him back until some of his upper body in the machine. The child can communicate with the technician the entire time and they can let them know if they are uncomfortable. He should not feel claustrophic because the machine won't be tight. Perhaps you can tell him that it is like being in a space ship and that he should be really still the whole time so that they can get pictures of his insides.
I hope this helps.
Always thinking of you and praying for your family,
Sharmin
(http://www.nepaimaging.com/cms/images/stories/services/mri_both.gif)
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Hi Manal,
Is transfusion an option for Ahmad? In general regular transfusion keeps spleen normal. ALso as close to normal Hgb gives immunity against cold and cough , I think. I hope the hydrea increases his Hgb when the cough goes away. Wishing the best for Ahmad...
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Zaini,
Thanks dear for your wishes :hugfriend, i hope it goes well
Sharmin
What you say, is what i am doing now. Actually i am trainig him now to sleep on his bed with no movement at all and i do the timing, he is taking it as a game and interested in seeing the pictures of his tummy. I will keep on tlking about it in that way. Thanks dear for the illustration and the advices, they really help :hugfriend.
Bostonian,
Thanks my friend for your concern :hugfriend. Actually transfusion (as agreed by the hematologist ) will be an option if the growth is hindered or below the normal range.
I agree with you about the high HB = high immunity off course and i hope too that the hydrea will start showing in the coming months
I will do the ferriscan as soon as the cough is gone, so he wouldn't need to cough inside the machine
Manal