Thalassemia Patients and Friends
Discussion Forums => Thalassemia-related Issues => Topic started by: nice friend on July 13, 2008, 08:00:44 PM
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hi andy :
gues wat i have to share more abt my tests .....
its another great news buddy ....i m sharing it bcoze i want to tell you that chelation works instantly for the liver and chelation will help ur liver more than ur aspectations check the result .. i m also reffering my ferritin level here so that u can compare my liver is started working as fine as my ferritin decreased ....
as i comparing my blood reports i m finding some more great news .... here is the report done at AGA Khan labortery .... so no doubt abt it that chelation will make ur liver feel good and better than iron overloaded liver and it will also help u to reduce insulin and controling diabetes with less medicines ..... I AM AMZED TO MY OWN REPORTS .. i didn't believe that its my reports but... its mine .... i m soo happy ...
May 05 2008 my S.Ferritin was 9650ng instead of 350ng
test results normal range
Liver Prfile ( L.F.T )
S.TOTAL BILIRUBIN 3.2 mg/dl ( 0.2 - 1.25 )
S.DIRECT BILIRUBIN 1.3 mg/dl ( 0 - 0.15 )
S.INDIRECT BILIRUBIN 1.9 mg/dl ( 0.2 - 1.2 )
GAMMA GT 219 I.U/L ( 3 - 50 )
SGPT (ALT ) 643 I.U/L ( 0 - 55 )
ALKALINE PHOSPHATASE 207 I.U/L ( 28 - 124 )
and now (july 13) when my S.Ferritin is 3582ng results are .....
test results normal range
Liver Prfile ( L.F.T )
S.TOTAL BILIRUBIN 1.9 mg/dl ( 0.2 - 1.25 )
S.DIRECT BILIRUBIN 0.3 mg/dl ( 0 - 0.15 )
S.INDIRECT BILIRUBIN 1.6 mg/dl ( 0.2 - 1.2 )
GAMMA GT 45 I.U/L ( 3 - 50 )
SGPT (ALT ) 73 I.U/L ( 0 - 55 )
ALKALINE PHOSPHATASE 112 I.U/L ( 28 - 124 )
Re: good news or bad i didn't judged yet ..!
« Reply #5 on: 29 June 2008, 20:23:07
its mean that iron is the reason of diabeties ,iron is the reason of bad liver funtions (and it is a joint function of liver and pancreas function),
So when iron is level is decreased i will need less insulin ... plz answer my
questions..
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need of insulin decreased to 95 units a day to 75 units a day .....
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as i mentioned that i was going to b victim of Hypoglycaemia ....
and questioned abt it to you .....
so i think it could b helpfull in diabeties
if thals controle their iron level so they can easily handle diabeties..
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Umair, you are really an inspiration to all of us. Congratulations my friend , i am really happy and proud of you
manal
:congrats :bigparty :yay
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:cheer :yahoo :clap :cheer :yahoo :clap :cheer :yahoo :clap :cheer :yahoo :clap :cheer :yahoo :clap :yay :congrats
I certaintly want to be just like you...
You are truly inspirational to me! :biggrin
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hi :
@ cherian
i m a simple ordinary boy ( not want to b man i like to b a boy ) ...nothing special in me .. look a deep ook inside u u will find more ability and qualitys than me ... coze i believe that every human being has a great man inside himself .. just need to find that man .. and believe on that ... u will find the result s of that immediatly ..... thanx for encouragment ... i m waitng to hear the same news to youu too ..... thanx alot
@ Manal
thanx for compliment i realy glad to see that the peopple of this forum are soo encourging and helping .. it make a smile on my face not only on face but in deeply inside too ... thank you all for helping me alot ..........
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:congrats
Impressive results
:thumbsup
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yeah buddy :
imperrsive result BY THE GRACE OF ALMIGHTY GOD ( ALLAH ) ...... thanx to ALLAh
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Report Date : 14/07/08
Test Results Normal range
Liver Prfile ( L.F.T )
S.TOTAL BILIRUBIN 1.9 mg/dl ( 0.2 - 1.25 )
S.DIRECT BILIRUBIN 0.3 mg/dl ( 0 - 0.15 )
S.INDIRECT BILIRUBIN 1.6 mg/dl ( 0.2 - 1.2 )
GAMMA GT 45 I.U/L ( 3 - 50 )
SGPT (ALT ) 73 I.U/L ( 0 - 55 )
ALKALINE PHOSPHATASE 112 I.U/L ( 28 - 124 )
Report Date : 28/08/08
Test Results Normal range
Liver Prfile ( L.F.T )
S.TOTAL BILIRUBIN 1.3 mg/dl ( 0.2 - 1.25 )
S.DIRECT BILIRUBIN 0.2 mg/dl ( 0 - 0.15 )
S.INDIRECT BILIRUBIN 1.1mg/dl ( 0.2 - 1.2 )
GAMMA GT 69 I.U/L ( 3 - 50 )
SGPT (ALT ) 100 I.U/L ( 0 - 55 )
ALKALINE PHOSPHATASE 149 I.U/L ( 28 - 124 )
not much impressive ..... but ... its ok ... Because
nice friend 14 July 2008
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need of insulin decreased from 95 units a day to 75 units a day .....
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now 03/09/08
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need of insulin decreased from 75 units a day to 67 units a day
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Wishing you all the best! :thumbsup
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Sajid,
How are you doing with your chelation? Are you getting proper amounts of desferal?
Please let us know,
Sharmin
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Thanks for your concerns Sharmin!
Yes, I have been getting them just in the nick of time. A couple of times it happened that I was the last one to get desferal just before the stock ran out.
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And what about your ferritin levels dear brother :biggrin are they going down?
Zaini.
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I'll find out in a few days. They've sent the sample to lab (Shaukat Khanum or Aga Khan :huh)
I hope Zainab is doing well. :)
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She is doing well Alhumdulillah :) enjoying Ramadan and very eager to start fasting,which i am not allowing due to her school .
Zaini.
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Sajid ,
please keep us updating to your report .. i hope that your report will b encouragin as well .. plz do care of your self and keep your self maintained ...
Zaini ,
its nice to hear that she is also fine and enjoying Ramadan ... please keep updating about the results of carao syrup ... can you please send me its details like contents .... i have to discus abt it to my doctor ....
Take care
umair
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Thanks Umair,
I hope that too. Meanwhile JSF's blood supply is suffering from Ramadan. There is a shortage of blood and I'm 3 days overdue to get my Transx. Lucikiy my pre transX Hb last time was 10.2 so a few days over won't be that hard.
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hey buddy :
there are many other NGOs in RWP ..try to manage blood from themm ... or you can also check blood banks for blood .. do something yaar ... but TX on time yaar dont compromise on your tx and tx date ...
take care
umair
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Don't worry. I will have to check tomorrow if they have harvested a B+ve in the last camp. Otherwise it's donor fishing time :biggrin (A hard job indeed in Ramadan)
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Best Of Luck Buddy :goodluck :thumbs :thumbup Wish you that, you will find blood tommorow ..... and you will have a smooth Tx tommorow (Ameen) .... :pray
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Sajid,
Let us know how things are going. It is a good thing that your previous pretx hg was good. Please keep us posted on your tx and on your desferal situation.
Sharmin
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October 29 2008
(http://i383.photobucket.com/albums/oo274/Nice_Friend/DSC01383.jpg)
October 29 2008
Test Results Normal range
Liver Prfile ( L.F.T )
S.TOTAL BILIRUBIN 1.0 mg/dl ( 0.2 - 1.25 )
S.DIRECT BILIRUBIN 0.2 mg/dl ( 0 - 0.15 )
S.INDIRECT BILIRUBIN 0.8 mg/dl ( 0.2 - 1.2 )
GAMMA GT 63 I.U/L ( 3 - 50 )
SGPT (ALT ) 80 I.U/L ( 0 - 55 )
ALKALINE PHOSPHATASE 160 I.U/L ( 28 - 124 )
Hi Andy and all others ,
please say something about my latest reports ,,
please discuss about the reports , and tell me wat i should have to ask about my self and treatment to my Doctor ...
i wiill be realy Thankful of you all ....
Take Care
Umair
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Umair,
Do you have previous results to compare with these? The results are consistent with iron overload or hemolysis or hepatitis or all three. I am also concerned about the frequency of your transfusions and do think you need to get your Hb up so you can better assess if hemolysis is taking place.
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Andy,
That was my concern as well - Umair is transfusing every 14 days - unil I learned that he is getting 1 unit each time. It would help to know what volume of blood he is getting. 14 - 16cc/kg starting at a pretx hg of 95-100 should give him 4 weeks between transfusions. If he is only getting half of that amount then it would last him 2 weeks. The problem seems to be that he is always starting too low, then he may be getting a small volume which brings him back down to a hg of 80ish after 2 weeks.
As you have said, it is hard to know if he is just not getting enough blood or if hemolysis is taking place - I think that a Coombs test and a list of transfusion volumes would help us figure out what is going on.
I am really hoping that people in other countries arrange to have blood samples sent out to North America or wherever genotype testing is possible - please talk to your blood banks. The inconvenience of doing so is way worth avoiding the complications that can occur if you develop auto immune reactions to transfused blood. For the time being, at least find out if it is possible to do so.
I wish that we had done genotype testing as soon as our son was diagnosed, I am so glad that Andy and Dr. Vichinsky have finally gotten things underway for us.
Sharmin
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live sizes in previous report :
16 dec 2006 = Live is grossly enlarged measuring 22.2cm in size with slightly coarse echotexture.
Ultra-Sound Liver , November.11.2008
(http://i383.photobucket.com/albums/oo274/Nice_Friend/DSC013972.jpg)
to enlarge this report
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Umair,
From what I can see, your liver looks better than before because the size of your liver has decreased by 4.2cm. The increased echopattern is indicative of steatosis
steatosis hepatitis, is a reversible condition where large vacuoles of triglyceride fat accumulate in liver cells via the process of steatosis.
http://en.wikipedia.org/wiki/Fatty_liver
That is my limited understanding of the results. I hope that things continue to get better for you. The decrease in iron levels will be very helpful to you and your hep C has been dealt with right?
Sharmin
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Umair,
Please update us once you have met with your doctor and had your transfusion.
Best of luck with everything,
Sharmin
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Hi Buddies ,
i m again typing my answer to last 2 posts and its third time in last 6 hours i m typing it, i hope this time i will got success to send it .
soo, sorry for being late to reply , yesterday i went to have Tx i got Blood as usual and pretty smooth Tx , i asked my thal center's lab incharge abt the volume of blood , but he left my questions un-answered and went disapeared to the scene and were disapeared . . i m not gona leave my thal center's lab incharge i will trace him again and i will keep asking to him . i didn't ask abt that to my thal center's doctor bcoze she was bussy at the moment i met her first time of the day for routine file filling practice , but after that i didn't meet her again when i my blood finished she wasn't there as it was too late to their off time (2 o'clock) and my blood finished on 3;15 pm .
yesterday before TX , i gave Blood sample At AGA Khan Labs to done CBC and LFT, Reports will b issued Tonight , i will update you to my reports as well .
about Ultra-sound, here is a link of my latest liver's ultra sound (complete report) . i will try to find out my old report and i will try to upload that as well ... here is the link ..
http://i383.photobucket.com/albums/oo274/Nice_Friend/DSC01397.jpg
Take care
umair
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Umair,
I think that your results show an improvement from your previous one (2006). Keep up the excellent work.
The fatty liver can be improved too with good diet and omega 3 - I believe. Have a lot of whole foods - fruits, vegetables and grains. Avoid anything processed or refined. I don't understand all of this well enough to give you very good advice.
I so wish that we could get your blood volume. For my son, we can see his blood volume ourselves because the pump has a transfusion rate, volume history etc. I wonder if it is even possible for your thal center's incharge to know what the volume is if there is no measurement of what is going in. Most often no one really knows how much is in a bag - they figure it out once it is infused at a certain rate how much went in. I just wish that your equipment was able to measure all of this - it is very very very important to know how much blood you are getting and how fast - otherwise you don't really know what your transfusion requirement really is. The volume in the units can vary GREATLY!!! How can one determine if you are just getting small volumes of blood or if you are having hemolysis?? My son is 10 years old and if given 15cc/kg he requires more than one unit. Perhaps you are getting only enough blood for a child and then your hg drops - causing your body to go through stress and extra iron absorption. We can't know for sure. If you are getting enough blood then the question of hemolysis comes into play - but we simply cannot know until we know what volume of blood you are getting.
The acceptable level is to be transfused at a hg level of above 90 or 95.
Sharmin
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Hi Sis ,
on every TX ,they gave 1 unit of blood to me, fresh 75% filled with packed red cells ... with 2 desferal vials ..... blood take's 2;30 to 3;00 hours or a little more some times ... and desferal take's almost 4-5 hours ....
my last Tx was to maintain my Hg , according to the schedule my Tx date was upcoming wednesday . but i made my own plan to get ride of Hg and to maintain Hg . i didn't collect my CBC & LFT reports last night . but today i will collect my reports bcoze hopefuly i m going to visit my Doc Today .... lets see wat she has to say and to change in my treatment .... i will update yo relay soon .. i will try my best to update as ssoon as possible but my PC is giving a realy hard time to me , can you elieve that i formatted and then re-installed the windows XP ( the long time taking windows when you are instaling new setup of it ) my PC more than 10 times in last 2 days ... shuh ... that is the reason why i m a little slow to reply you all in past couple of days ...
but i will update you all soon ....
Best Regards
Take Care
Umair
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Hi Buddies ,
today i recieved my reports , here r the results .
October 29 2008
Test Results Normal range
Liver Prfile ( L.F.T )
S.TOTAL BILIRUBIN 1.0 mg/dl ( 0.2 - 1.25 )
S.DIRECT BILIRUBIN 0.2 mg/dl ( 0 - 0.15 )
S.INDIRECT BILIRUBIN 0.8 mg/dl ( 0.2 - 1.2 )
GAMMA GT 63 I.U/L ( 3 - 50 )
SGPT (ALT ) 80 I.U/L ( 0 - 55 )
ALKALINE PHOSPHATASE 160 I.U/L ( 28 - 124 )
November 15 2008
my Pre-tx Hg was 9.2
Test Results Normal range
Liver Prfile ( L.F.T )
S.TOTAL BILIRUBIN 1.5 mg/dl ( 0.2 - 1.25 )
S.DIRECT BILIRUBIN 0.1 mg/dl ( 0 - 0.15 )
S.INDIRECT BILIRUBIN 1.4 mg/dl ( 0.2 - 1.2 )
GAMMA GT 64 I.U/L ( 3 - 50 )
SGPT (ALT ) 76 I.U/L ( 0 - 55 )
ALKALINE PHOSPHATASE 138 I.U/L ( 28 - 124 )
today i went to meet my doc , i asked her about my reports and she said that reports are showing good progress . i asked her abt my Hg and wat Blood volume should i consume . she replied that 250ml is enough for you but not for 2 weeks you have to short the gap between two Txs 12 day instead of 14 . i asked her about the possibility of Hemolysis she tld me that my Hg is a little bit low but my reports not showing any symptoms of Hemolysis , as i m consuming 250ml after 14 days . she said its quite normal but i ( me ) have to maitain my Pre-Transfusion Hg Above 9.5 or around 10 . soo i m feeling realy light and relaxed after hearing that . its time to feel peace in mind Lol ....
when she saw my LFT reports and said that its better than bfore ( previous reports ) . treatment will remain same and i have to continue Zeffix for 1month ( to complete the course of 3 months ).
Ferriprox DeCalc , Desferal plan , Vitamin-E and zinc syrup all should be continue as prescripted in previous visit ....
i willl upload my CBC and previous Liver ultra sound reports , as soon as possible.....
Best Regards
Take Care
Umair
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Umair,
That's excellent progress in your liver levels. There is a direct link between lowering your ferritin and improvements in these tests. Keep it going buddy. :thumbsup
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Umair,
Buddy, that is great! That is a small volume, so it makes sense that you are transfusing more frequently. I don't think that there is any problem with hemolysis:) If you start a little higher than at the end of 12 days you should not be low. I am very happy to hear this, these transfusions will not interfere with your chelation because they are not big volumes. Just keep you hg up!
Good job with the chelating I am very proud of you Umair - you are going to do great!!
Sharmin :thumbs :thumbs
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@ Andy
Andy , Thanx for encouragement , your opinion and your encoragement means alot for me , there is a big hand of you to push forward towards the good health ... i m realy thankfull of you . about liver , yeah my doctor also said the same and sugest me to continue with Zeffix ... there is a big difference in today's results and my previous test results , bcoze i m on liver treatment and meanwhile complying with chelation as well ... doing my best to keep both ( liver and iron ) controled , in normal ranges .....
@ Sharmin
yeah i think that reasons behind sugesting that low volume could be ,
1) low volume and short gap means less iron and fresh blood on every Tx with the gap of 12 days .
she also refused the posiblity of hemolysis bcoze there is no big drops in Hg, 1 point per week ... i mean if my pre-tx hg is 9 then after two weeks that will back on 9 ///....
Thanx for encouragement Sis ... i always need encouragement ...
Best Regards
Take Care
Umair
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Dear Umair
You are really doing an excellent job my friend, congratulations and keeep going :hugfriend
manal
:clap :clap :clap :clap :clap :clap :clap :yahoo :yahoo :yahoo :clap :clap :clap
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Hi Manal ,
Thanx for encouraging words , i m trying my best n hope that i will achieve my goal of taking controle on Iron and other thing... . you people are realy great thanx to you all :ty :thankyou
Umair
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here's my LFT report :
i think i forgot to share my last LFT report so now here it is ..
my last LFT ReportJanaury 21 2009
Test Results Normal range
Liver Prfile ( L.F.T )
S.TOTAL BILIRUBIN 1.0 mg/dl ( 0.2 - 1.25 )
S.DIRECT BILIRUBIN 0.2 mg/dl ( 0 - 0.15 )
S.INDIRECT BILIRUBIN 0.8 mg/dl ( 0.2 - 1.2 )
GAMMA GT 57 I.U/L ( 3 - 50 )
SGPT (ALT ) 99 I.U/L ( 0 - 55 )
ALKALINE PHOSPHATASE 146 I.U/L ( 28 - 124 )
My Latest LFT report March 17 2009
Test Results Normal range
Liver Prfile ( L.F.T )
S.TOTAL BILIRUBIN 1.5 mg/dl ( 0.2 - 1.25 )
S.DIRECT BILIRUBIN 0.3 mg/dl ( 0 - 0.15 )
S.INDIRECT BILIRUBIN 1.2 mg/dl ( 0.2 - 1.2 )
GAMMA GT 83 I.U/L ( 3 - 50 )
SGPT (ALT ) 143 I.U/L ( 0 - 55 )
ALKALINE PHOSPHATASE 147 I.U/L ( 28 - 124 )
the worst report is my CBC report , completely unexpected results , platelet count is increasing instead of decreasing .... let me find better place for complete report to share ...
Take Care
Umair
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Umair,
What did your doc say about increase in SGPT?
Zaini.
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Zaini Sis ,
hummm , programe to meet doctor is post poned , due to stormy/bad weather , it was a rainy evening , i like this weather :) .... soo , Papa cancled the programe bcoze it seems dangerous to drive in rain .... now programe is post poned on Tommorow but on Saturday doctor sit's in her clinic for a little short time than other days and another probleme , tommorow is my TX Date ( 12 Days completed :grin ) ... soo, i think, i would go to consult about my reports to my doctor on Monday.. let's see happened, but the worst thing is ( wat i m expecting) i m not gona start Asunra within the end of april, but i will ask her to start asunra if it is safe and possible in my condition :( ..... Mayb , not sure ..... :grin :grin :grin
Take Care
Umair
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Umair,
I won't suggest you to start Asunra with that elevated level of SGPT,for now you should stick to your combination therapy,this is what i think,let's see what your doctor has to say about that.
Zaini.
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Zaini Sis,
Thanx for your Concern,.... i m not expecting that my doctor would prescribe me Asunra on this stage, as My S.FE is not Below desired level to start Asunra and LFT Report is also not encouraging at this moment , soo i dont think that she will be loking for Asunra at this stage , but its me, who dont want to go for chelation with desferal anymore ... but as it is complussion to go for desferal until S.fe and LFT come to Desired level to Start Asunra .... Let's see wat is gona happen next :grin ... i think she would like to give me another chance to get my LFT to normal levels and if i failed to do this she will be looking to start something else for liver ... Prayers Needed ...
:thankyou2 for sugestions, i always need that ....
Take Care
Umair
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I am praying that your LFT will be normal Umair.
Best,
Sharmin
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Hi Sharmin Sis,
Thanx for the prayer ( i know thanx is very small and insignficant word in reply of prayers ) ... i hope that LFT will be normal and stable in normal ranges , but it is always fluctuating .... hope that this issue will be settled down soon ....
Take Care
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hi everyone m ayesha 23 yrs old married n hav thal major n hepa c m v tense about hepa c my liver size is also enlarged about 17 cm... n also hav pain in liver.. my sgpt in 123 last time n genotype for Hcv is 3b...i had takken treatment of hepa c for 1 yr interferon treatment but i still hav hepa c.. with the treatment of hepa c my sgpt was 27 in the last but after thend of treatmnt yar after 2 months sgpt again 123... kya karun dont understand yar.. help me out
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Hi Ayesha,
i am fine and hope tat you'll be also fine and enjyoing your life at its fullest , .. i also have Hep-C & B , ay doc done a treatment of Hep-B on me Sep-20-08 to Jan-23-09, By The Grace of Almighty ALLAH, i got benefit to that treatment, as my SGPT, ALT, Direct and indrect bilirubin decreased to normal after that, for a few months ..
bfore stating that treatment my .. one thing you can see that i mentioned another fact that is S.FE , iron overleoad is also a role playring thing in liver's problemes , you can see in this thread that decrease in S.Fe made my LFTs nearly normal , that means less iron in your liver may help prevent the complications .. please read this thread carefuly tto know that iron is main prob of not only the liver but all other organs , but especialy for liver .... please try to controle your S.FE , that is another key role player factor in interferon treatment .. when i was severely iron over loaded my SGPT was 640 i have mentioned this fact in my this thread, then when my iron level came down it come's back near normal ranges ...
now she want me to start interferon ( i call that injection inter-fir'oun [Pharoh] :rotfl :rotfl :rotfl :rotfl :teehee :happydance , bcoze i red alot of that injection's side-effects ) , but she have another and better option for me that is Peg-interferon (Pegylated-interferon) , Peg-interferon is known as latest version of intereferon with less side-effects.... I hope , i answered all the question, but i m not sure ,
so dont hesitate to ask wat-ever your questions are about , i will try my best to get and then send you the answers of your concerns.....
bfore starting chelation S.fe was above 9500 : and 22cm liver
after getting S.fe 3560 : 18cm
Best Regards
Take Care
Nice Friend
Umair
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Hi guys.
Just thought that I post that I have a new pump finally.
Its pretty cool especially as it now fits my 30ml syringe perfectly and it can run either 12 hours or 24 so that is a weight off my shoulders.
The only down side is that it is big and bulky but portable.
My nurse was very apologetic over the size but she didn't get a say in which pump was going to be brought. That decision was made by the admin of our hospital.
At least I have a pump that going to do its job whether I'm 24 hours or 12.
I'm happy about that.
Spoke to my chemist today as I have noticed my desferal is having flakes in it from last week.
Due to my hands, my chemist now prepares my desferal into 7 syringes for 1 week.
I am concerned that the desferal maybe not dissolving well. I have never had this problem before.
At the moment it is 3 ml water to each vial. I have said to add another 2ml to the overall mixture.
This may help. He said it could be the temperture as it is getting colder over here.
I'm not sure as I have never had this problem before. Have transfusion in 2 weeks so I will discuss it with my nurses.
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HI Cheriean,
:congrats for new pump, you know something , i like to try new medicines and all kind of new stuff , so mometns like this one brings a big smile and happiness on my face :P NEW MEDICINE :food hummmmm ....
i think, your chemist is right, it could be bcoze of temprature, if you're mixing desferal in cold water it could be flakey , i know this , bcoze , i store's my desferal in referigrator bcoze climate is warm over here in Paksitan, so when-ever i insert cold water or insert's water into cold vials of desferal powder that remains flakey until solution comes to normal levels, it happened to me in last winter ( couple of month ago ) , soo wat i did to fix this probleme was , holding up water in hands to so the temprature of water vials comes to normal and did the same with desferal and then mixed the both after that hold up desferal solution vials for 5-10 minutes, so to the warm hands desferal solution comes to normal level and desferal dislve better. this really worked .
try to avoid using desferal until that is not disolved properly , .....
BTW : wat happened to your hands ??..
Good luck with all the stuff and especialy with chelation ...
Best Regaards
Take Care
Umair
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The chemist now mixes my desferal so I don't know how he is doing it. He has been doing it for over 2 months as my hands and fingers lock. It is quite fustrating as I am limited with a few things.
It took me awhile to hand over the mixing of my medication. Very independent and not willinging to give control to anybody. Got to the stage where my family weren't always available to do the desferal so I spoke to the chemist.
It's good but when the mixture comes back flaky, I get worried. Over here desferal is not refridgerated anymore if it is mixed for a certain amount of days. Pharmacetacol protocol.
As for my hands and fingers, a specialist said I had camptodactyl but he has not confirmed or anything. I have physio and or that but you might as well say that I am dealing with it by myself.
The las couple of weeks have been pretty bad as now the pain in wrist, hands and fingers are getting constant. :dunno
Transfusion next week so I will be bringing this problem to their attention.
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hi umair.. but my s.ferritin is really decreased it is only 600.... in the test of s.ferritin.. n liver size in 18 cm.. n sgpt 123.. now temme n u r taking about peg.onterferon i know about then but they r so expensive m trying to get them see when i will be able to get then..... thanx for advse keep informing me thanx yar .. take cares.. bye byeeeeee i wil send u my report new report then temme me hhow it is.. c ya take cares bye
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Hey Ayesha,
Where do you go for transfusion and which doctor are you consulting? As you can see i am from Karachi too,we go to Aga Khan for my daughter's transfusion,i am sorry i don't know the technical details about Hep,but as i suggested before please start using Nigella (Kalonji) with honey,you can either grind it and make a mixture or you can take it as whole,it will help,one of our members Ambareen had very bad Hep and she reversed the situation with the help of this mixture,so please try it.
Hope this helps,if you wanna ask something else you can also PM me .
Zaini.
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Hi All ,
@ Cheriean ,
Cheriean , ii m realy sorry to hear that you're going camptodacty, is "camptodactyl" is something like this girl has ?? :
(http://www.angelfire.com/or2/ashlysworldofwonders/handb.gif)
(http://www.angelfire.com/or2/ashlysworldofwonders/ashbead.jpg)
May You recover back to it veyr soon and wishing you a fast recovery to it ... May God Bless you with the best of health andfitness conditions ....
@ Atiya Khan ,
AOA Atiya ,
:agree to Zaini, you can try Nigella as i m giving it a try as well :grin , i think its harmless, the only question is how to take nigella and with wat you can can take it and answer is nigella+Honey= misx it up and swallow ...
one of our members Ambareen had very bad Hep and she reversed the situation with the help of this mixture,so please try it.
Zaini is right Ambareen was realy critical when she start taking Nigella + Honey ...
i would like you to read these posts to help understading and to know the amazing facts about Nigella ....
http://www.thalassemiapatientsandfriends.com/index.php?topic=2639.0;highlight=nigella
http://www.thalassemiapatientsandfriends.com/index.php?topic=2539.0;highlight=nigella
http://www.thalassemiapatientsandfriends.com/index.php?topic=1147.0;highlight=nigella
About S.Fe :
hummm ... Good to know that your S.fe is under 1000 , really impressing and amazed that , it is possible in pakistan as well ?? hahaha , yes it is , Your S.Fe level is in pretty fine levels , when you have done your last test S.fe ?? ..
about Reports :
i think, it would be better to share post with Zaini, Andy , Sharmin and Manal Like Experties , i m not good at helping people to medical aspects , so it would be better share here or to share your report to one of them by sending them PM ...
Liver :
before starting treatment of hep-b my liver was 22-23cm and in post course of Lamuvidine my liver come to 17cm but its enlargring again and in my last USG it was 18cm ..
Peg-interferon :
i have not yet started any alopathy treatment for liver , but my doc is looing for that , she gave my father 2 options my father asked which one will you sugest to go for and then she said Peg-interferon.. ( hey .. its nothing like that peg :teehee ) .... let's see wat happened , my father said he will go for peg-interferon bcoze of less side-effects ....
i hope i answered all the questions , if i missed anything then please let me know .. i will try to answer if i could ..
Best REgards
Take Care
Umair
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Hi nice friend.
Never be sorry, I'm okay :wah. Its called life's challenges. :rotfl
Life is too simple so God makes it harder so I can be tough. ???
I couldn't see the picture you posted for some reason.
I have looked up the diagnosis before because the specialist gave me the name written down.
Wasn't that impressed as both the site and specialist were pretty negative.
Hahaha I got so distressed that I googled Thalassaemia just to calm myself.
At the moment I just take one day at a time and concern myself with Thalassaemia.
I understand and know about Thalassaemia and it helps me feel great about myself.
Its funny but it reminds me of all my accomplishments achieved so far.
Camptodactyl is scary as I'm not getting much support from the specialist and so I don't know whether I am doing things right. At least the physiotherapist is cool. We certainly have tried all sorts to help me with my work and living.
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Cherieann,
Please keep us posted. I hope that your hands feel better really soon.
Umair,
How are you sugar levels now? Your ankle?
Sharmin
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Will do Sharmin.
Umair I hope that you haven't over done things.
Look after yourself buddy.
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Hi guys. Today my pharmacist was told that the desferal stability has changed so the desferal can only be mixed and used within 24hours.
Hence the reason for the flakes.
My chemist now has to make a new dose everyday and someone at home needs to do the weekend mixture for me. My medical team have been notified of the desferal stability and aren't very happy as they were not informed of the changes.
The good thing is that now we know what is happening and in a way maybe it can help our cause to get the exjade tablets in New Zealand.
Lets see what happens.
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Good luck with that Cherianne :hugfriend I really hope you'll get exjade soon.
Zaini.
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:hugfriend Haha Thanks Zaini
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Hi ALL ,
Sorry for being too late to reply, i was :catfight to my PC nd i think i won as it is working again ...
@ Cheriean ,
its nice to hear that things are not worst as i had thought but i think you ahve to take care of it , here are some links replate to the conditon you mentione " camptodactyl " .. i hope you'll feelling betterand recvering fast to that and will be soon cope with it completely .... Always Praying :pray ... about flaky desferal mixture , i will post something related to that in soon future ..
Good luck Cheriean , alot of good wishes and prayers :pray ... Best REgards ...
Homology of lubricin and superficial zone protein (SZP): products of megakaryocyte stimulating factor (MSF) gene expression by human synovial fibroblasts and articular chondrocytes localized to chromosome 1q25.
http://www.ncbi.nlm.nih.gov/pubmed/11518279
http://en.wikipedia.org/wiki/Camptodactyly
http://www.angelfire.com/or2/ashlysworldofwonders/about.html
=============================
@ Sharmin :
Sis , Ankle is back to its real shape and its no more aching super but .... now i m having ache in my knees as results of slipping , yup , i slipped in my kitchen last sunday ( Thanx GOD nothing that much serious ) but i got hurt at knees and left arm ( i had a fracture in shoulder of the same arm ) thanx GOD my head were safe and not struck by naything nearby me , i m saying this bcoze i love this empty box ( my Skul/head ) that is used to store dried grass for camping reason ( bone fire camping :grin ) ... but , everything is ok now , and i know knes will fine soon, wat can i do more about ?? nothing na ?? soo , my knees are aching Hurrayeee , ( when you cant do anything to solve a prob then its better to cheer/enjoy :grin this is wat i m doing "hurrayee" ) .. about Sugar level : BSLs in controle , i increased a few units of insulin to get ride over it and its working fine ... no hypos and no hyper , only lil fluctuation and thats all ... dont worry everything is fine at my place ... n i m super fine ...
=========================
Thanx for replies and your concerns .....
lots of Best wishes and REgards
Take CAre
Umair
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Umair,
I hope that your shoulder feels better soon, and that knee.... I also hope that you will not have anymore issues, it really has been one thing after the other lately. Take care bro. I am happy that the BSL levels are good.
Sharmin
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Umair,
Nice to hear about your BSL and ankle both being normal and under control! Sorry to hear about you slipping in the kitchen and hurting yourself. I hope you recover from it soon, insha-Allah!
I wonder what you were upto in the kitchen? :wink j/k
Take care and get some rest.. and.. put some antibacterial cream on your knee (don't want any infection).
Regards,
SF
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Umair, wishing you a speedy recovery, please take good care
manal
(http://shop.floriq.co.uk/images/Get_Well_Soon_Bear.jpg)
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umair uncle take good care of your ankle :rotfl and no more sneaking into the kitchen :p
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Thank you Umair.
I appreciate your postings and time you give to give me links.
Get well soon
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Hi Buddies ,
Thanx alot Sharmin, Manal, SF, Tariq & Cheriean , for wishes and praying for me and our messages .. oh lots of messages thank you buddies ....
=======
Manal , i realy like the image that you uploaded Thanx Alot Sis :grin ...
========
i m fine now , ,... yeah i do cook (for my self only ) but that time i wasn't going there to cook anything , i was there to use dust bin ( small one ) that is located just out-side of another door of the kitchen that open's up in passage , i was going to use that dust bin to break distilled water's small containers (water for injection) to make Desferal , and i had 2 vial of desferal and to vials of water in my hand thats why i was unable to use my hand to get support to anything and dharaaam... banged in wall wow it was a new experience of its kind , before that i was banged directly on floor when my arm got fractured (2-3 years ago ) i i m very use to of banging down straigthly but it was something new hummm :p .... hahhaha ...
========
Tariq Bhai Uncle Umair's(me) ankle is super fine now but uncle umair is looking wat's gona up with him next :grin .. always in trouble like a " Probleeme Child " oh correction like " Probleme Uncle" hehehe :teehee .....
========
Sharmin ,yup , ankle and BSL are in super controle but with increased no# of insulin Units ..
today i got Hypoglycemia and hummmm... you know wat happened when i got hypo?? after that my parents came in my room with ( abhi mujhey nahi pata saib APPLE kay muraaba ko english mein kia kehtay houn aur ga'jar kay murabay ko bhi .. matlab no parhaiz , nothing else ) yeah i ate both hummm :p ( aisa HYpoglyceamia to once a week ho jana chahiay :wink ) ( i hope zaini ,sharmin or Tariq will translate it for other buddies ) ....
=========
I wonder what you were upto in the kitchen? :wink j/k
SF , its nothing like that, i mentioned above that i why i was there ..
about anti-bacterial cream : it is not an open wound like something , it is only bruise over there at knees ( purple bruise ) wow how colourfull life is perple bruises black heads brown scarsredish infusion site and alot more , how colourful life is .. i can say that my life is soo colourful hahahahaha and true, my life is better than many peoples and i m more fortunate than alot of peoples in this world , there are alot of people who r less fortunate than me, Thanx God , that HE showered alot of HIS blessings on me ..... ... wow i m getting serious, oh no ...
===========
and Again To Manal , Sis, my right knee was hurted most and this teddy bear has bandage on his left knee , this is not good na !! , please do something ,,,
Tariq bhai : please use any photo editing software aand shufle his ( Teddy bear's) legs hehehhe :teehee .....
Best Regard and lots of good wishes for you all ,
Take Care
Umair
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and Again To Manal , Sis, my right knee was hurted most and this teddy bear has bandage on his left knee , this is not good na !! , please do something ,,,
Tariq bhai : please use any photo editing software aand shufle his ( Teddy bear's) legs hehehhe ....
:rotfl :rotfl :rotfl :rotfl
manal
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my last LFT ReportJanaury 21 2009
Test Results Normal range
Liver Prfile ( L.F.T )
S.TOTAL BILIRUBIN 1.0 mg/dl ( 0.2 - 1.25 )
S.DIRECT BILIRUBIN 0.2 mg/dl ( 0 - 0.15 )
S.INDIRECT BILIRUBIN 0.8 mg/dl ( 0.2 - 1.2 )
GAMMA GT 57 I.U/L ( 3 - 50 )
SGPT (ALT ) 99 I.U/L ( 0 - 55 )
ALKALINE PHOSPHATASE 146 I.U/L ( 28 - 124 )
My Latest LFT report March 17 2009
Test Results Normal range
Liver Prfile ( L.F.T )
S.TOTAL BILIRUBIN 1.5 mg/dl ( 0.2 - 1.25 )
S.DIRECT BILIRUBIN 0.3 mg/dl ( 0 - 0.15 )
S.INDIRECT BILIRUBIN 1.2 mg/dl ( 0.2 - 1.2 )
GAMMA GT 83 I.U/L ( 3 - 50 )
SGPT (ALT ) 143 I.U/L ( 0 - 55 )
ALKALINE PHOSPHATASE 147 I.U/L ( 28 - 124 )
My Latest LFT report April 25 2009
Test Results Normal range
Liver Prfile ( L.F.T )
[bgcolor=#ffffff]S.TOTAL BILIRUBIN 1.4 mg/dl ( 0.2 - 1.25 )[/bgcolor]
S.DIRECT BILIRUBIN 0.4 mg/dl ( 0 - 0.15 )
[bgcolor=#ffffff]S.INDIRECT BILIRUBIN 1.0 mg/dl ( 0.2 - 1.2 )[/bgcolor]
GAMMA GT 92 I.U/L ( 3 - 50 )
[bgcolor=#ffffff]SGPT (ALT ) 80 I.U/L ( 0 - 55 )[/bgcolor]
ALKALINE PHOSPHATASE 156 I.U/L ( 28 - 124 )
White highlighted are decreased onez , and others are increased ... i think its better report than last one wat do you think ??? please let me know ...
Note : from 14-febraury-2009 to 17-march-2009 i used only Milk thistle ( but a gap of 10 day fbcoze of Malaria from 25-feb to 5-march ) , ...
and then i started Nigella + Honey on 25-march-2009 and regularly taking that since then ...
Best Regards ( hoping that you people who are gonna try these herbal medicines will get more better results than mine , .... SF, Atiya khan, and all others who are gona try this, i Wish You/them All The Best of luck and health ,,, May GOD bleess you all with health and happiness )
Take Care
Umair
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Umair,
Your ALT went down quite a bit. The other levels are only marginally different from previously and the changes mean nothing. The ALT dropping is significant and I think it shows a good trend. Remember when using herbal remedies, that these are not drugs and do take time to have their effect. For example, Dr Marwaha found that it took a full year to see the real effect of wheatgrass, so patience is always needed when using natural remedies. All in all, you are on the right track.
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Hi Andy ,
Than you buddy, for explaining and itnerprating my LFT reports , Thanx alot ... its nice to hear that results are better than previous 1 and i m on right track , .. did i start Exjade once my ALT comes to normal level ?? without going through Interferon therapy ??/ ..
Remember when using herbal remedies, that these are not drugs and do take time to have their effect. For example, Dr Marwaha found that it took a full year to see the real effect of wheatgrass
yeah, you mentioned this a little ago , and i remember this , but i think and i m gald to see that everything showing its effects very early than the other people .. like it has been a month of Nigella and honey and its second month of milk thistle and both Herbal remediies showing their efffects really quickly and i think its a good sign for me ... Thanx alot buddy for mean-time reply and encouragement ...
Best Regards
Take Care
Umair
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Umair,
I am glad to see your lab tests getting better. I hope that you are going to be able to use exjade soon, based on your ALT level I think it would be okay - but I don't know how to advise you based on the rest of your history.
I wish you continued success. Do you have a recent ferritin?
Best,
Sharmin
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Sharmin,
Thank you Sis, for a super encouraging message , yeah i m hoping to start Asunra in soon future but i think it will take a lil more time to move on Asunra as ALT is still a lil bit high , soo i think i have to wait a lil more, mayb for a couple of week ... i m planing to visit my haemotologist on this coming friday to discuss this report and treatment plan .. i will collect CBC report in the evening and then let you know wat that show's ..... Thanx alot for wishes and support tat you gave me throughout the year , :thankyou2 ... i think i dont need to mention S.FE has you have seen and replied to that thread but , 1384ng is my latest S.Fe report ...
Best Regards
Take Care
Umair
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Umair, thanks for sharing your test results! I do also feel hopeful that Nigella will benefit me with regards to my Hep C. I will also order Milk Thistle.
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Hi Sf,
Your welcome , ... i hope that Milk thistle and Niigella+honey will also work for you and you will see their benefits within intial month of that ... Wish you all the best for that ...
Best Regards
Take Care
Umair
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Thanks Umair :hugfriend
~SF~
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:biggrin
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My LFT Report of Janaury 21 2009
Test Results Normal range
Liver Prfile ( L.F.T )
S.TOTAL BILIRUBIN 1.0 mg/dl ( 0.2 - 1.25 )
S.DIRECT BILIRUBIN 0.2 mg/dl ( 0 - 0.15 )
S.INDIRECT BILIRUBIN 0.8 mg/dl ( 0.2 - 1.2 )
GAMMA GT 57 I.U/L ( 3 - 50 )
SGPT (ALT ) 99 I.U/L ( 0 - 55 )
ALKALINE PHOSPHATASE 146 I.U/L ( 28 - 124 )
My LFT report of March 17 2009
Test Results Normal range
Liver Prfile ( L.F.T )
S.TOTAL BILIRUBIN 1.5 mg/dl ( 0.2 - 1.25 )
S.DIRECT BILIRUBIN 0.3 mg/dl ( 0 - 0.15 )
S.INDIRECT BILIRUBIN 1.2 mg/dl ( 0.2 - 1.2 )
GAMMA GT 83 I.U/L ( 3 - 50 )
SGPT (ALT ) 143 I.U/L ( 0 - 55 )
ALKALINE PHOSPHATASE 147 I.U/L ( 28 - 124 )
My Last LFT report April 25 2009
Test Results Normal range
Liver Prfile ( L.F.T )
[bgcolor=#ffffff]S.TOTAL BILIRUBIN 1.4 mg/dl ( 0.2 - 1.25 )[/bgcolor]
S.DIRECT BILIRUBIN 0.4 mg/dl ( 0 - 0.15 )
[bgcolor=#ffffff]S.INDIRECT BILIRUBIN 1.0 mg/dl ( 0.2 - 1.2 )[/bgcolor]
GAMMA GT 92 I.U/L ( 3 - 50 )
[bgcolor=#ffffff]SGPT (ALT ) 80 I.U/L ( 0 - 55 )[/bgcolor]
ALKALINE PHOSPHATASE 156 I.U/L ( 28 - 124 )
=========================
My Latest LFT report May 26 2009
Test Results Normal range
Liver Prfile ( L.F.T )
[bgcolor=#ffffff]S.TOTAL BILIRUBIN 1.8 mg/dl ( 0.2 - 1.25 )[/bgcolor]
S.DIRECT BILIRUBIN 0.7 mg/dl ( 0 - 0.15 )
[bgcolor=#ffffff]S.INDIRECT BILIRUBIN 1.1 mg/dl ( 0.2 - 1.2 )[/bgcolor]
GAMMA GT 84 I.U/L ( 3 - 50 )
[bgcolor=#ffffff]SGPT (ALT ) 72 I.U/L ( 0 - 55 )[/bgcolor]
ALKALINE PHOSPHATASE 106 I.U/L ( 28 - 124 )
Hi Andy ,
i want to say thanx to you buddy, :thankyou2 for pulling me forward to start Milk Thistle & Nigella for this purpose you sent me both and later then i found both here , thanks for making me able to try Milk thistle otherwise i dont that, that i was planning to try that , when i got that at my door-step then i thought " okiey , let's try it once , and then i decided to give it a try " Thanx alot buddy for the advice too and for always being there when-ever i needed help ... right info and advice on right time make's the difference in my health :) .....
Hi All (especially Zaini, Sharmin, Manal, Tariq , Lena, Cheriean, Dore, SF and a few people who are not very active but were stayed in-touch ).....
you are not forgetted , you people are also worked alot for me , your encouragement, support and help made it easier for me ... i found you people always there for me when-ever i needed help support and encouragement .. i dont think that i can come out all of these things without the support of you all .. i found you people always there for me when-ever i got bored and when-ever i needed strength ... Thanx alot to alll of you , you all are very special to/for me :) ..... MAy GOD Bless you all with the Healthy, Wealthy life full of life .....
@ SF,
I wonder what you were upto in the kitchen? j/k
wat else you're expecting that i was doing there ?? :D :grin please.... please tell me, i m worried abt that .. ( how early i woke-up and got to know that i had to ask this :D :grin )
Best Regards
Umair
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Umair,
This is so wonderful! I am so so proud of you!! :thumbsup
Now be sure to take you IP6 regularly and you will be in perfect health!!
Sharmin
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Sharmin Sis,
Thank you :) ..
Sure , i will now start IP6 , i was waiting for the results .. question is why i dont started that bfore ??.. actully i won't to be confused of results thats why at that time i decided to start those herbal meds one-by-one , first i was looking for live so i started nigella and milk thistle then i decided to try one first to be sure abt the results of these .. i took milk thistle for 1 month ( from feb-16 to march 17 ) and then done LFT , then i added nigella+honey (i kept taking milk thistle , never stopped that since feb-16) and took that for a month ( from march 20 to april-25 ) then tests .. and since then i m on nigela+honey & Milkthistle and these tests . i was waiting for the results now i know the current level so i will start IP6 and then will b keep checking for its effects too ..
Thanx alot for reminding me of that ..
Best Regards
Umair
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Umair,
How do you feel now physically compared to when your ferritin was so high?
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Andy,
Feeling of you're looking cool & smart is a great feeling soo it make's me feeling freshed-up and energized , ..
physicaly : as you know high level of fe slow down's the growth rate and that effects your health in term of feeling fit and the micro fractures in bones that you mentioned a lil ago could happen bcoze of high fe ... i was having pain in bone at the time my fe was high pain like something is crushing the bone to inside and weak bones , if something touch's little hard was painful for ... and i was feeling sick not well ..
but now , i m feeling happy more energized than i ever been , i m at best of my health , main thing is i m not feeling sick anymore .. now thalassemia for me is only a day after 10-12 days and nothing more than that .... bcoze i m maintaining my hb above than 9.5 (pre-tx) and i think that's to feel fine but i m thinking to keep that in a lil more up from 10-11 pre-tx ... soo Thalassemia is a day for me ... and that is a good feeling i think .. . feeling strong and forgoten the aches which i had bcoze of iron overload (e.g chest aches , heart palpation, bone aches, ucler of stomach, frequent tummy aches, tightened liver, fluctuating and out of controle blood sugar levels and alot more complications of iron ) .. as i mentiioned the link between iron overload and insulin need in this thread, a long time ago :
http://www.thalassemiapatientsandfriends.com/index.php?topic=1825.0;highlight=judge
overall i m feeling superfine, i never been in that much good condition i m now a days, as some of you mentioned that i m looking like Salman khan now a days , and to Andy i reminded the memories of Sherlock holmes, mean's that i m looking good and healhty now a days and I am hahahaha :grin ......
Feeling like , i m back in the game again, i m back in the life again ALHUMDU-LILLAH(All Praise to God )
Best Regards
Umair
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now thalassemia for me is only a day after 10-12 days and nothing more than that
Exactly how i think of Thal, just one day, not more than that.
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@ SF,
Quote
I wonder what you were upto in the kitchen? j/k
wat else you're expecting that i was doing there ?? :D please.... please tell me, i m worried abt that .. ( how early i woke-up and got to know that i had to ask this :D )
I had no particular thought on my mind when I asked you this question... It was simply a teaser...
It's so nice to hear your liver function is also better and that you're feeling really good! Keep up the good work! You're an inspiration for me!
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a lil mistake in my last post : now thalassemia for me is only a day after 10-12 days and not more than that....
================
Hi SF ,
i was trying to recall why i missed to ask that bfore and just got the reason that is " bcoze there was an abreevation of just kidding there in the last of your question [ j/k ] " i m sure thats why i replied with an answer and decided not to ask about that question .. it is nothing serious , this time i was j/k hahah , sorry if i made you feel worried or if you offenced by this :imsorry ...
@ Topic,
Thanx alot for the complement and i think you may try nigella now and i hope & wish that will work for you too INSHA-ALLAH ( If it is God's will / God willing ) ... Thanx alot for taking time to reply :) ...
@ Tariq bhai ,
yeah buddy, that is best attitude to cope with Thalassemia, thats why you and me think's the same at this ;) ...
Best regards
umair
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Umair,
So, do you also grind the nigella seeds like Ambareen suggested, or do you take them as whole with honey? I didn't like the ground nigella in honey. So, I have started eating whole seeds with food. My mom usually uses them in cooking, and when I feel I don't have enough on my plate, I add some more to my meal.
Andy, would taking Nigella as described above be equally effective as taking them with honey or taking them empty stomach as some of the members on this forum do?
Thanks,
SF
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Hi SF,
i take 11 Nigellla seed as whole seeds mixed in honey on empty stomach before breakfast after that i avoid drinking water or eating something for next 30 minutes ( i dont know why but i think my papa told me to do this, i think its bcozeto let Nigella work and get into stomach and then to eat anything else or to take break fast ) .... i swallow whole seed after mixing them in honey its very easy to swallow , for cooking i think nigella should be added in the last touch ...
i hope you'll find nigella beneficial very soon and you'll witness its benefits very amazing ....
Best Regards
Umair
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I don't think there's any reason to use them on an empty stomach. Ambareen suggested using the nigella mixed with honey after meals.
http://www.thalassemiapatientsandfriends.com/index.php?topic=2639.msg26081#msg26081
In fact, since nigella is used as a spice it is easy to incorporate them into the diet by adding them to foods. They can be put in a frying pan until the seeds pop, which doesn't take long, and then added to various dishes as you prepare them.
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Andy,
The best way to take Nigella seedz is by grinding them. and keep it in a bottle and a bottle of honey beside it on your dinning table or near you computer coz ppl never 4get to sit on the computer no matter wht happenz isnt it..!!![bgcolor=#ffffff] so tht you ever 4get it, and have it after every meal[/bgcolor], for babies just a pinch of the powder mixed with honey on you palm n let the baby have it
i highlighted a line , i think she wanted to say that if you forget to take Nigella+Honey Bfore meal then you can take it after meal ... i think that she wanted to say this ... i think she is the only one who can clear this issue , asking to her would be a better option than anything else.. and yes , i think we can add it in meal like a spice , but to use it as herbal remedy we should have to take like a remedy as well/too ( seprately to the meals , bcoze i heard that , Nigella work's differently with everything like honey is good and hot when that is taken in warm water and that works different as differently that mixed with ) ...
i hope i make the sense :grin .... anybody there to explain clearily wat i wana say ???? ... please explain if anybody can do it ...
Best Regards
Umair
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Andy and Umair, Thanks for your posts!
I've been taking Nigella as part of meals. I may start taking them separately with honey in addition to taking them added to meals as I don't think I get enough through meals only.
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Your Welcome SF ,
i forgot to mention that i m take's Nigella+Honey only once a day ...
@ Andy.
Is that enough for me to take Nigella+Honey only once a day bfore breakfast on empty stomach ??? wow pretty much confused after reading again and agin the quote i posted in my last post .... if i m not wrong Ambareen is taking that with/bfore every meal ... :whew ....
Best Regards
Umair
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My Latest LFT report May 26 2009
Test Results Normal range
Liver Prfile ( L.F.T )
[bgcolor=#ffffff]S.TOTAL BILIRUBIN 1.8 mg/dl ( 0.2 - 1.25 )[/bgcolor]
S.DIRECT BILIRUBIN 0.7 mg/dl ( 0 - 0.15 )
[bgcolor=#ffffff]S.INDIRECT BILIRUBIN 1.1 mg/dl ( 0.2 - 1.2 )[/bgcolor]
GAMMA GT 84 I.U/L ( 3 - 50 )
[bgcolor=#ffffff]SGPT (ALT ) 72 I.U/L ( 0 - 55 )[/bgcolor]
ALKALINE PHOSPHATASE 106 I.U/L ( 28 - 124 )
My Latest LFT report July 23 2009
Test Results Normal range
Liver Prfile ( L.F.T )
[bgcolor=#ffffff]S.TOTAL BILIRUBIN 2.1 mg/dl ( 0.2 - 1.25 )[/bgcolor]
S.DIRECT BILIRUBIN 0.3 mg/dl ( 0 - 0.15 )
[bgcolor=#ffffff]S.INDIRECT BILIRUBIN 1.8 mg/dl ( 0.2 - 1.2 )[/bgcolor]
GAMMA GT 60 I.U/L ( 3 - 50 )
[bgcolor=#ffffff]SGPT (ALT ) 72 I.U/L ( 0 - 55 )[/bgcolor]
ALKALINE PHOSPHATASE 110 I.U/L ( 28 - 124 )
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Hi Umair, :wink
I'm so proud of you. In reading your blood tests result .it indicate that you are doing really well with your chelation , keep up the good work :clap :clap :clap :clap :clap :clap
Sajid is looking and is happy too.
you are an inspiration to all the young on this web-site
Much love
Kathy
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Hi Kathy ,
its Very nice to see you posting again ,, i m really soo happy to see you posting ... yeah, i worked really soo hard but it bcome easy with time , the most difficult time was the when i started that but after that things start turing easy and came easy , first month of chelation was the most difficult one but after that it bcame like a routine thing to do ... whenever i see a person star's chelation bcoze of knowing my Fe levels and benefits of lnormal Fe levels i feel soo happy , now i have more than 10 friends at thal center who are chelating on regular basis bcoze of seeing the change in my colour and health bcoze of this and this made me feel soo good that at least i m th reason of something good :grin ... Thanx alot Kathy for taking time to reply and encouragment :) ..
Best Regards
Take Care
Umair
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My Latest LFT report July 23 2009
Test Results Normal range
Liver Prfile ( L.F.T )
[bgcolor=#ffffff]S.TOTAL BILIRUBIN 2.1 mg/dl ( 0.2 - 1.25 )[/bgcolor]
S.DIRECT BILIRUBIN 0.3 mg/dl ( 0 - 0.15 )
[bgcolor=#ffffff]S.INDIRECT BILIRUBIN 1.8 mg/dl ( 0.2 - 1.2 )[/bgcolor]
GAMMA GT 60 I.U/L ( 3 - 50 )
[bgcolor=#ffffff]SGPT (ALT ) 72 I.U/L ( 0 - 55 )[/bgcolor]
ALKALINE PHOSPHATASE 110 I.U/L ( 28 - 124 )
My Latest LFT report 05 - Jan - 2010
Test Results Normal range
Liver Prfile ( L.F.T )
[bgcolor=#ffffff]S.TOTAL BILIRUBIN 1.5 mg/dl ( 0.2 - 1.25 )[/bgcolor]
S.DIRECT BILIRUBIN 0.5 mg/dl ( 0 - 0.15 )
[bgcolor=#ffffff]S.INDIRECT BILIRUBIN 1.0 mg/dl ( 0.2 - 1.2 )[/bgcolor]
GAMMA GT 78 I.U/L ( 3 - 50 )
[bgcolor=#ffffff]SGPT (ALT ) 100 I.U/L ( 0 - 55 )[/bgcolor]
ALKALINE PHOSPHATASE 192 I.U/L ( 28 - 124 )
QUANTITATIVE HCV PCR [ Final Report ]
HCV RNA is less than 2000 copies/ml .
HCV RNA GENOTYPING [final report]
test sample is negative for HCV RNA genotype.
wat does it mean's ?? ... plz xplain this in details .... another question , does age factor effect's on the test results ??? as they placed my age wrong on Reports and the request slip ( they mentioned 27 years and i m 23 years old )
Note : for both ( Quantitative HCV PCR and HCV genotyping ) blood sample was givven on the same date 08-Jan-2010
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Umair
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Umair,
The two HCV tests show that there is currently no active infection. "HCV RNA is less than 2000 copies/ml" is the limit of that lab for measuring the virus, so it means the level is less than 2000 and could be zero. Some labs can measure to a much lower level, but this does show that it is under control. The other shows negative also. This is good. I do think that one way to help keep hepatitis under control is to remove the iron from the liver, and I think this shows the continued progress of your chelation. Your LFT's are still on the high side but I think you may see these drop also with continued compliance, as your liver function recovers from both iron overload and a hepatitis infection. Since the LFT's are affected by time of day, can you tell us what time of day you had the blood taken?
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Andy,
Since the LFT's are affected by time of day, can you tell us what time of day you had the blood taken?
i dont remember exactly but i think that was after lunch time , not sure it was just after lunch or 1-2 after lunch ....
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Umair
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Morning tests tend to give lower results for the LFT's, so you might want to schedule your next test for morning.
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Andy ,
i will surely schedule LFT in morning time , n will try it soon ...
Umair
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My Last LFT report 05 - Jan - 2010
Test Results Normal range
Liver Prfile ( L.F.T )
[bgcolor=#ffffff]S.TOTAL BILIRUBIN 1.5 mg/dl ( 0.2 - 1.25 )[/bgcolor]
S.DIRECT BILIRUBIN 0.5 mg/dl ( 0 - 0.15 )
[bgcolor=#ffffff]S.INDIRECT BILIRUBIN 1.0 mg/dl ( 0.2 - 1.2 )[/bgcolor]
GAMMA GT 78 I.U/L ( 3 - 50 )
[bgcolor=#ffffff]SGPT (ALT ) 100 I.U/L ( 0 - 55 )[/bgcolor]
ALKALINE PHOSPHATASE 192 I.U/L ( 28 - 124 )
Recent LFT report 07 - April - 2010
Test Results Normal range
Liver Prfile ( L.F.T )
[bgcolor=#ffffff]S.TOTAL BILIRUBIN 1.4 mg/dl ( 0.2 - 1.25 )[/bgcolor]
S.DIRECT BILIRUBIN 0.5 mg/dl ( 0 - 0.15 )
[bgcolor=#ffffff]S.INDIRECT BILIRUBIN 0.9 mg/dl ( 0.2 - 1.2 )[/bgcolor]
GAMMA GT 61 I.U/L ( 3 - 50 )
[bgcolor=#ffffff]SGPT (ALT ) 69 I.U/L ( 0 - 55 )[/bgcolor]
ALKALINE PHOSPHATASE 140 I.U/L ( 28 - 124 )
hurrayeeeeeeeeeeeeee !!!!!!! ... another report that is showing improvement :) ... I'm really very happy :party ......
Umair
btw, i didn't manage to go in morning times ,, so, for these tests i went in evening 5-6 hours after lunch at 12 .
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Umair,
Just as expected, your hepatitis is much easier to control when you have a low iron load. This indirectly gives some evidence that your liver is getting cleaned out. I hope you can also find some success in controlling diabetes.
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Umair,
I just want to stress once again that studies of patients have definitely shown better glucose tolerance once the iron load is removed from the pancreas. I think your liver iron is showing good signs of being under control. However, the other organs clean slower, so continued chelation is needed to remove pancreatic and cardiac iron deposits. Be patient. You have already seen the virtue in patience and you will continue to see this proven over the next two years. It takes 17 months of full chelation to remove half the iron from an overloaded heart. As this is being cleaned out, rest assured that the same things is happening in your pancreas. I am not saying you won't be a diabetic but your glucose tolerance should increase and the diabetes will be easier to control. Meanwhile, try the herbal methods. I believe they can do a lot to restore proper function, as long as the iron is also removed.
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Andy,
Thanx Andy ... as u know my Hep-C PCR report was negative and i have been treated for Hep-B last year or mayb in the last few months of 2008 .... so , the only probleme for my liver was my iron level after getting that close to normal range m feeling very well .. I'm no more faty looking person bcze of liver.. and tummy is looking quite normal ... abt pancreas ,, yeah as u mention that controling iron will put some effect on it and result wud b in less insulin need or no ( for No need insulin there r less chances i guess but wat i like to do is to keep hoping for the best and strugling as well and leave rest of the things on ur luck ) .... now iron is around normal range since last 5-6 months ....I'm hoping for somthing good to happen :) ..... chelation is still on with ferriprox 9 tabs a day and desferal 2 desferal with Tx ... but soon i will go and discuss my Tx plan and chelation plan to my doc.. .as my i m gaining weight my blood requirement is also increasing .. so , that is sumthing that must b discussed to doc ..... it is already increased to 1 unit blood of 25 ml every 8th day .. and i think thats is a lil bit higher than 15ml/kg ... i m worried abt it ... gaining weight is bcome's like a new door to probs lolzzz....
message for all thals :
i hope thals will read this thread and wwill decide to go for chelation after seeing the positive effects of chelation ... all i wan to convey is .. keep chelating chelation is the key factor in thals life ... if u r regular with chelation , you'll live a normal/quality life , .....
Best Regards
Umair
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Have a question about Hep. B. How would I know that I may have hep. B? I haven't done any bilirubin test, so I would identify only with SGPT? But as we take chelators, SGPT cannot be the only point we should stress and confirm that we may or may not have it. Should I get bilirubin test done the next time I transfuse, Andy?
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You should have the hepatitis B test done. This is a routine test for anyone receiving chronic transfusions. Bilirubin results will not tell you if you carry hep.
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We are getting done Hepatitis B and HIV at Civil Hospital every 6 months and both are Negative/Non Reactive.
In addition in July end i also took Vaccine of Hepatitis A and going to take booster dose of Hepatitis B soon.
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Alright, I may get Hep. B done the next time, thank you.