Thalassemia Patients and Friends
Discussion Forums => Thalassemia Intermedia => Topic started by: asma on July 17, 2013, 07:23:58 PM
-
My daughter 2.5 yrs old is taking HU 3.5ml daily along with folic acid , vitamin e, vitamin b complex and calcium. Today we got her test results of cbc , sgpt and Creatinine level. She started HU on June 1 2013 , she took it for 2 weeks and then stopped for 2 weeks due to various infection/ fever. She has been back on HU for the past two weeks. Her current dose of HU is 15mg/kg. Her results are as follows :
Now (3.5ml HU) During infection. With HU (2.5 ml) before HU
Hb. 6.6 6.2 6.8 7.4
Retic count. 4.5% ------ 2.5% 10%
N.R.B.C. 3
Sgpt(alt) 35 normal range upper limit is <35
Creatinine. 0.2 normal range is 0.3 to 0.5
I have a few questions if Andy you can clear them up for me.
1. What does N.R.B.C result of 3 mean? My understanding is that's its nucelated red blood cells. Are they normal in thalassemia intermedia. What do they indicate?
2. What is the significance of sgpt (alt) test? What does her result of 35 touching the upper limit mean for her? Should I be worried ?
3. What does a low Creatinine level indicate? Is her result of 0.2 very low? Once again should I worry about it? What does it indicate ?
4. Is Retic count going up good for her?
I want to understand all these things so that I can mange my baby better. Plz do reply to me. Thanks in advance !!!!
-
1) NRBC's are present in thal intermedia and major and the level usually will drop if Hb is raised by transfusion or by HbF induction as with hydroxyurea. The level is not significant.
2) The ALT range is insignificant. 35 is not high. Normal range is 20-60, but medications will not be stopped by small increases in ALT. This level can actually be much higher without posing real danger.
3) Creatinine levels are lower in people of small stature. If it was high, then it can be a problem.
4) You want to see the retic count drop and it has from 10% before the HU was used. It probably increased a bit because the Hb had dropped during the illness.
Make sure she stays well hydrated.
-
Thanks Andy for taking time to answer all my questions in detail.
-
Hi Asma,
Why you change the HU dose from 2.5ml to 3.5ml?
Increas dose of Hu may reduce the blood count and Hb.
I have seen with my son, when we use to give him 250mg hydrea Hb was around 7 and RBC is aroud 4, but when i icreased to 330mg, RBC fall to 3 to 3.25 and Hb aroud 6.5.
Any such experience with others please share.
Regards,
Dip
-
Hi dip
Actually when my daughter was taking 2.5ml HU her hb dropped from 7.2 to 6.8 . Her doctor is the leading expert and researcher over here. His publications have been printed in American journal of pediatrics and hematology. His name is Dr. Tahir shamsi. Maybe some of you have head of him. He says his research shows that most patients showed best results at 16mg/kg. Of course hr said dome respond better at lower or higher doses. So that is why he increased her dose. I guess we all have to try and see what's best for each child. All the best to you and your family.
Regards
Asma
-
Hi, I just wanted to know what HU 2.5 ml means. I understand that HU means hydroxyurea and its dose is mg/kg. Can you please tell me what it means.
Thanx
Pooja
-
Hi pooja
What I meant was that I dissolve a 500 mg capsule of hydrea in 10 ml water and then give my daughter 3.5 ml of this. I used to give her 2.5 ml like this. Hope this clears up the confusion for you.
Regards
Asma
-
Hi Asma
so your initial dose was 125mg and now it is 170mg.
What is the weight of you child?
Dip
-
Hi dip
My daughters weight is 13 kg. And I am not good in maths so don't really understand the mg conversion you did for her dose :)
All I know is that know we have apparently put her on 15mg/kg dose.
Oh can u tell me how did u calculate this mg dose ?
Regards
Asma
-
Hi Asma, thank u for clearing that up. Also 15mg/kg means that if ur child is 1kg then the dose of ur child is 15mg. Now since ur child is 13kgs the dose is 15 multiplied by 13 which is 175kgs. Also if u r dilting 500mg capsule in 10ml water the 2.5 ml means 500/10 multipled by 2.5 which is 125.5 and by 3.5 means 175mg. Hope this helps
Pooja
-
Thanks pooja for explaining the maths to me. I was really wondering how it works.
Regards
Asma
-
One month update
I got alyshah tested again for cbc, Retic count, sgpt ( alt) and Creatinine. Here are the results
Hb 6.7 previous was 6.6
Retic count still waiting
Sgpt (alt). 120 previous was 35
Creatinine 0.2 same as before
Andy my question is should I be worried about sgpt being so high. I am really worried now . Still need to see her doctor. She is taking 3.5 ml at 15mg/kg .
-
Just talked to alyshah doctor. He has ordered a PDT done for her immediatly. I am just so worried and depressed. Does her high sgpt (alt) 129 mean she can't take HU anymore. Cam we decrease her dose of it. What can we do as her parents. I want to do the best for her. Can someone tell me what this all mean.
-
It's up to the doctor whether or not you can continue with HU. I think that at the least, a break should be taken. I will state again because it cannot be stressed too much. Hydration is essential. With HU or Exjade, this applies. The patients must stay well hydrated at all times.
-
Thanks Andy. We just got her LFT tested. What are the key things in LFT that we should pay attention to.
-
This is alyshah LFT report
S. Total Bilirubin 1.5
S. Direct Bilirubin 0.3
S. Indirect Bilirubin 1.2
Gamma GT 12
Sgpt (alt). 97
Alkaline phosphatase 233
Her doctor has stopped HU for a week.
Andy how can I help bring down her sgpt. And how did her sgpt decreased from 129 to 97 in just 36 hrs. Also should I keep giving her folic acid and her other vitamins .
-
http://www.clinlabnavigator.com/alkaline-phosphatase-alp.html
Several caveats must be remembered in interpreting ALP results:
ALP levels should always be measured after fasting because enzyme levels increase as much as 30 U/L after food ingestion. Patients with blood group O and B who are secretors can have increased ALP levels after eating a fatty meal because of the release of intestinal enzyme.
African Americans have 10 to 15% higher ALP serum levels than Caucasians.
In children, ALP is increased up to 3 times the upper limit of normal and in pregnant patients it can be increased up to 2 times normal.
These values vary greatly with time of day and after ingesting fatty foods.
The response should be to cease the drug until levels return to normal and then the drug should be started again. I will mention again that hydration is extremely important and should never be overlooked.
-
Thanks Andy for your informative replies. They really help people in our situation to calm. Don't know what I would have done without the support of this forum.
-
Hi Andy
Hope you are doing well. I was just wondering could a diet high in fat increase the sgpt (alt) ? We have started HU again. Hopefully this time we won't have any issues. I am trying to keep her very well hydrated. But I was wondering could a diet high in butter increase the sgpt (alt). For the moment I have really cut down on fatty food from her diet. Can you plz advise on this.
Thanks
Asma
-
It might have an effect on absorption of the drug by the liver. Try low fat and see if it makes a difference. Let us know the results.
-
Hi Andy
As you might remember alyshah sgpt was very high at 97 at her last tests about 3 week. So her doctor had stopped HU for a week. Then I started giving her HU with a very low fat diet. Now here are her results
Hb 7.0 increased from 6.7
Sgpt(alt) 20 decreased from 97
Creatnine 0.2
So Andy I think that low fat diet definitely makes a difference. I would recommend it to everyone !!!
Also I have a question. Alyshah is sneezing quite a lot and has a buy of chest congestion. She doesn't have fever. So I am just giving her anti allergic and have not stopped hydrea. Do u think its likely that her hb might drop due to illness but having no fever. And what makes the drop in hb? The illness itself or the fever or the antibiotic we use to treat the illness ?
Thanks for your advice
Asma
-
I don't think her Hb will drop due to allergies. Sickness can cause an Hb drop, as the body's resources are depleted by illness.
Thank you for your report. More and more we are seeing that high fat foods cause problems for people using drugs like Hydroxyurea and Exjade.
-
Hi Andy
How are you doing. I got alyshah tested for her monthly hb test and Creatinine and LFT. Her hb has increased to 7.5 . All other tests are well within the range. The only issue is that her platelets count is very high at 11000 when the normal range is 150-450 . Why do u think this happened. What are we supposed to do now. Her doctor appointment is for 11 Nov. I am very worried. Her weight is 14.5-15kg. And she is taking 4ml hydroxyurea. Plz advise what can I do while waiting for the doctor appointment. I am extremely worried.
By the way she had severe urine infection three weeks back for which she took antibiotics. Can that effect it ?
Thanks
Asma
-
Hi Asma,
Yes, an infection could have caused the rise in platelets. I would also suggest re-testing because platelets tests are often wrong in thals, as the small red cells are often counted as platelets. Has she started taking vitamin E yet?
-
Yes she is taking vitamin E. Should I be worried about high platlets and should I keep giving HU or stop it.
-
Whenever high platelets are reported, I think re-testing is needed before making any changes. The platelet test is the test that is most commonly read wrong in thals. Don't change anything until you have talked to your doctor. Ask for another platelet test.
-
How are you doing. Alyshah hb has increases to 8.5 but there is something new in comments. Although everything is well within range.
Hb 8.5
Wbc 12.3 normal range (5-15)
Neutrophils 32.2 normal range ( 25-35)
Lymphocytes 61.3 normal range (45-65)
Eosinophils 0.7 normal range (1-6)
Monocytes 5.6 normal range (5-9)
Basophils 0.2 normal range (0-1)
Platelets 172 normal range (150-400)
The thing is that this time in comments section this is mentioned for the first time in her reports
Occasional myelocytes and metamyelocytes seen leucoerythroblastic picture clinical correlation is advises.
now what does this mean. she is on HU 3.5ml . Andy plz explain this to me and help. Do i really need to go see her doctor.
asma
-
Myelocytes are immature white cells. I believe this is monitored to make sure nothing unusual occurs while using hydroxyurea. Ask your doctor about the level next time. I don't think there is any reason at all for alarm.