Thalassemia Patients and Friends

Discussion Forums => Iron Chelation Corner => Topic started by: jatinder on December 01, 2008, 10:29:22 AM

Title: WHAT IS YOUR FERRITEN LEVEL
Post by: jatinder on December 01, 2008, 10:29:22 AM: HEY GUYS PLZ VOTE
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: nice friend on December 01, 2008, 11:59:32 AM: hi buddy ,
i vote and my level is below 3000 , i m sure abt it :wink ...
hey jatin wana make a guess , yeh guess within how many days you will controle your ferritin , its my way to set a goal and try to achive that goal within time limit for that goal ... i m a little late to achieve my goals for ferritin but i m getting closer in very short time ... soo try this way as well .. tell me how many days you will take to controle your ferritin 90,120 or 150 days .. .waiting for your reply ... its a good and easy way to set a target & time for that target and then try to achieve that target within that time ...

i hope yo will enjoy doing it ...

Take Care
Umair
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: jatinder on December 01, 2008, 02:13:24 PM: hey bro!!!

thats gr8 idea
i think that 120 days is enough

take care
jatinder kewlani
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: nice friend on December 01, 2008, 02:24:51 PM: Done buddy ,,
120 days means = 4 months ... okiey
today is december 1,
sooo , april 1st is the last date ..
lets see can you do it or not ....
i think you cant make it possible soo show me that you can doo it ...
i m always here to help you .. if any help needed just ask ...
i hope that you will show your detemination and will power ...
Wishing you All Best Of Luck buddy , i hope to hear more good news from you realy soon .. :goodluck

Best Regdards
Take Care
Umair
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: Zaini on December 01, 2008, 02:53:25 PM: Umair,

That's a great idea,all the members on our forum who have high ferritin levels should do it,why don't start a competition :wink .

Between,my daughter's ferritin is below 3000,that is 1259.

Zaini.
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: nice friend on December 01, 2008, 03:12:55 PM: Okiey Zaini ,
lets see who will take his/her SF below 1000 to start Asunra .. soo competition is On .... please inform tell zainab that she is now in competition with Me & Jatin ... anyone else want to jump in this competition will b welcomed.... just answer here your SF and you will b in competition with us ...

Umair
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: jatinder on December 01, 2008, 03:37:41 PM: dear friends

i m also in this competetion
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: helenkol on December 01, 2008, 05:15:52 PM: My ferriten level is 989 now. :mad :wah
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: nice friend on December 01, 2008, 08:33:14 PM: Don't cry Helenkol , your ferritin is noot too high , its near/in safe range... just a little more chelation will take your SF to the normal level ... soo ... be an iron warrior and do make that possible .. i hope to hear a good news to you as well that you have controled ur iron ..

umair
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: Manal on December 01, 2008, 10:14:28 PM: I just love the idea, guys we are backing you and i am sure we will congratulate you on the first of April. Please remember we are always here for any of you.

YOU CAN MAKE IT

Manal
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: Sharmin on December 02, 2008, 02:07:27 AM: :cheer :cheer :cheer :cheer :cheer :cheer :cheer :cheer :cheer :cheer :cheer :cheer
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: Zaini on December 02, 2008, 08:01:36 AM: Hey Umair,

That won't be fair coz Z's ferritin is way lower then your's and Jatin's,and i am just waiting to finish off the bottle of ferriprox i have,then inshallah we'll start Asunra anyway,so others who have ferritin of more then 1500 should jump in the competition i think :dunno.

Sharmin,

What about little A's ferritin?Have you checked it yet,it ought to be low now.

Zaini.
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: Dori on December 02, 2008, 10:01:31 AM: We can have 2 olympic games;) One for managing the level and one to get the control over the level. Will that be an idea?

The nurse let my fe test yesterday, but that will be a wrong count because I am ill. She made a mistake, because we normally do that every month.
Two weeks ago it was around 2500. I will let you know what it is at 1th April, but remind me of it. At 6th April I will reach my target dose of Exjade.
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: jatinder on December 02, 2008, 11:06:13 AM: hey Peartree Girl ,

i tihink thats gr8 idea
we should do like that
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: sahil on December 02, 2008, 02:11:02 PM: 465ng/ml. Can I still participate? :smiley
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: Zaini on December 02, 2008, 02:34:00 PM: Sahil,

You are like, already the winner :wink you can be a judge :rotfl another judge can be Smurfette :biggrin since you two have the lowest ferritin if i am not wrong ?

Zaini.
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: nice friend on December 02, 2008, 08:25:12 PM: LoL Zaini :rotfl :rotfl :rotfl :rotfl
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: Kathy11 on December 02, 2008, 09:24:04 PM: Their should not be competition among sufferers ,I think everyone is doing their best and everyone are winners for staying alive.

Lets not start that competitive business because we dont want to render some people inadequate in the fight with this illness ,
We need to assist everyone by encouraging them to do the best we can.
We dont need competiton to do this.

We are all in the same boat ,No one is better off.

Lets work together,

Kathy
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: nice friend on December 02, 2008, 10:10:44 PM: Kathy ,
this competition is not to find a winner or the best Iron warrior icon .. its to motivate all thals to set a goal and then try to ahchieve that goal within the time limit you have selected. .it will motivate thalls to do their best to take their SF level in normal ranges within a specifiic time ...
it will motivate them to start agressive chelation to make tis possible within the time limit ....
this competition is not to find who is better but it is to challenge other that " you can do it within limit or not ?? "" or " let's see who has the ability to achieve his/her targets within the time he/she selected " ... soo , wat i waant to explain here is, its not the competition like between arrivals .. its a postive competition ...... may b i m wrong .. soo , please have ur say & convince me or convince to me .... waiting for Andy and all other to reply and have your say ...

Take Care
Umair
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: Kathy11 on December 02, 2008, 10:20:45 PM: Umair You know best.
It was my point of view lats live it at that.
After all, I undestood what was going on, but I thought we could say it in a more positive way
Kathy
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: Kathy11 on December 02, 2008, 11:25:10 PM: TCompetition can have both beneficial and detrimental effects. Many evolutionary biologists view inter-species and intra-species competition as the driving force of adaptation, and ultimately of evolution. However, some biologists, most famously Richard Dawkins, prefer to think of evolution in terms of competition between single genes, which have the welfare of the organism 'in mind' only insofar as that welfare furthers their own selfish drives for replication. Some social Darwinists claim (controversially) that competition also serves as a mechanism for determining the best-suited group; politically, economically and ecologically.

On the negative side, competition can cause injury to the organisms involved, and drain valuable resources and energy. Human competition can be expensive, as is the case with political elections, international sports competitions, and advertising wars. It can lead to the compromising of ethical standards in order to gain an advantage: for example, several athletes have been caught using banned steroids in professional sports in order to boost their own chances of success or victory. It can also be harmful for the participants, such as athletes who injure themselves when pushing their body past its natural limits, or companies which pursue unprofitable paths while engaging in competitive rivalries.
Source, Dictionary Now I will rest my case
Kathy
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: Sharmin on December 03, 2008, 12:03:36 AM: Managing thalassemia is a constant effort. It is important to always stay on top of things and the key is to be preventative. It is important to maintain a good hemoglobin (above 90) and to keep your ferritin levels down. There are various forms of chelation available, the key is to use them and to use them right. Our members need to find a way to make these chelators work for them, under doctor supervision and get their ferritin levels as low as possible.

Sahil and Smurfette have made great strides in doing this, and we can all learn from them. Firstly, their accomplishment shows us that it is possible and secondly, that it takes great dedication to do so. As a group we are all dedicated to lowering ferritin levels of our members - and we are here to show you what chelators can be used and how they should be used in order for them to be effective. If members share with us what they are currently doing and they are finding that things are not working our then we can guide one another such that we all see results. Other than getting adequate, timely and safe blood transfusions - iron is the biggest challenge. If thals are well transfused and chelated they have every reason to enjoy a full and healthy life. What Umair has already done in recent months is absolutely amazing - I wish him continued luck.

Perhaps, we can combine the different ideas that have been put forth in this thread - to set goals within certain time frames - that must be reached for your well being and you may surprise yourselves by reaching goals you did not even think were possible. Let us also take into account what Kathy has said, in that we hold each other's hand and help one another reach our individual goals. For those of us who have had success, we can encourage those that are struggling and give them advise to reach success as well. The rest of us can help them find appropriate information and cheer them on during the difficult times. As Umair has said - setting goals and times limits is also vital and we can make sure that we all reach them. We are a group - and we a whole lot of history of successfully supporting one another to bring about miraculous changes. Most of us have been changed for the better by this group and because of the way we support one another - each in our own way. If we keep up what Andy has taught us to do we can't fail.

GET CHELATING, it won't be easy but it is very possible,

Sharmin
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: Sharmin on December 03, 2008, 01:35:06 AM: Zaini,

Little A's ferritin has varied between 1300 and 1700 during the last few months. I am not sure how exjade and desferal are working together, whether exjade is releasing more iron into the blood stream than the desferal is mopping up ??? Nevertheless, his iron levels seem to have come down nicely and his transfusion requirement seems to have decreased as well.

He will have a ferritin drawn tomorrow and I will post it. We have a follow up appointment in Oakland in Februry, at that time he will have a SQUID scan again to determine what his iron levels actually are - I hope that the test will show that there has been a significant decrease in his iron since the last test (July 3rd). I cannot describe the change in his skin color, his complexion has lightened many shades this suggests to me that there is much less iron in his body. I hope Zainab has a lot of benefit from Asunra as well :)

I will update again really soon Zaini,

Sharmin
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: Zaini on December 03, 2008, 03:31:04 AM: Good luck Sharmin, :hugfriend

With a mom like you,Little A's worries will also be little :hugfriend.

Kathy,my dearest friend :hugfriend the competition i suggested was never to hurt anyone,if you or anyone felt offended in anyway,i am sorry,

It's just that you know Umair and Jatin are quite young,and young blood loves to compete,when i saw jatin's levels,i was really worried,having that much iron in your body is not good,Umair is doing much better bringing his ferritin down,so as i am a mom,i feel for them,and i just know that kids love competing,i said my daughter won't be suitable for the competition,but when i told her about she was like "Yes mama,i am going to make it " :) and i have told her that not winning is not loosing,it's just stumbling on your way to winning,keep going and one day you'll be the winner.

I know no one is better then the other here,since we have members who are doing there best with possible available resousrces but we can not ignore what Sahil and Smurfette have achieved through determination,they are like role models for other thals,i hope one day my daughter will be with them,with below 1000 ferritin.

So my dear Kathy, i totally respect your point of view,but it was just to give all thals a positive motivation. :hugfriend

Take care,

Zaini.
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: Andy Battaglia on December 03, 2008, 03:54:57 AM: The only important thing here is that we manage to encourage patients to be more faithful about complying with chelation. The examples of those who have worked hard to get their iron down are many. Smurfette, Sahil, Aston Dialo, Masuma (reversed congestive heart failure!), Kats, Helen, and on and on, all have something in common. They have been "religious" about chelation and all have low ferritin. This is the goal we have to encourage all to work towards. It is possible, even when neglect has been the previous pattern, but it takes dedication and work and any support we can give, should be given. If it is put in terms of a competition, the winners are every single patient who lowers his or her ferritin level. If anything, they are competing against themselves and the habits that led to high iron. The race is on and keeping yourself alive is the prize.
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: Kathy11 on December 03, 2008, 10:16:23 AM: Dear Zaini.

I was not upset. :hugfriend :hugfriend :hugfriend I understood what you and the rest meant but at the same time I just wanted us all to understand that the wording could have been better.

AS I mentioned we all are trying the best we know how.I respect you too and no need to apologize.
Take care sweetie we are a team.

It very important for all to comply with chelation we all agree,
Kathy
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: Manal on December 03, 2008, 06:58:45 PM: Quote
the winners are every single patient who lowers his or her ferritin level. If anything, they are competing against themselves and the habits that led to high iron. The race is on and keeping yourself alive is the prize
.

:happyyes :happyyes :happyyes :happyyes :happyyes :exactly :exactly :exactly :agree :agree

manal
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: Dori on December 04, 2008, 09:41:17 AM: Ok, please forgive me that I haven't read all new posts.

Year in year out I had bad luck with chelation, because of the late start of real chelaction (at the age of 16,/5.5 year ago) and allergies.

I'm happy to tell you that it seems that luck is becoming more and more my friend. The income and outcome is the same. :wah :biggrin .

Ofcourse I will support others. don't worry :bighug !
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: nice friend on December 04, 2008, 03:08:34 PM: Hi buddies ,
soo ... everything is ok now ?? ... i think yes ... everything is okiey now .. gud :thumbsup ....

Take Care
Umair
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: Sharmin on December 05, 2008, 01:26:52 AM: Hi guys,

Little A's ferritin level today was 1770. I was hoping that it would have been lower, but he just started the full dose of exjade in mid October so it has been less than 2 months. I hope that his ferritin will drop further soon. I also hope that the SQUID scan in February shows that his actual iron levels are lower than this, as I had said earlier his skin color has changed very significantly. I am very glad that he is much lower than the 2880 value he was at earlier this year.

I'll keep you all posted:)

Sharmin
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: nice friend on December 05, 2008, 11:22:02 AM: Sharmin ,
its realy nice to hear that his SF Level is lower than it was earlier this year , its a super good sign as he had a big gap in chletation therapy duraing this summer, but he got the controle over his ferrtin after that gap ... i hope & wish that he will do more better in few months and his SF level will decrease more .... Wish You & Littlle A, all The Best of Luck for his SQUID Test ... he showing a good progress in chelation and combination Therapy of Desferal + Exjade proving its self as it is showing the good results ...
Quote
as I had said earlier his skin color has changed very significantly
yeah , he is a super cute little boy ... :thumbsup . :wink :goodluck :flowers for Little "A" ..

Best Regard
Take Care
Umair
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: Zaini on December 05, 2008, 12:13:12 PM: That's great Sharmin :hugfriend it'll be more low with the time being as he is chelating faithfully,good luck .

Zaini.
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: jatinder on December 05, 2008, 04:14:53 PM: hey sharmin sis,

its gud to hear from you that little boys got his ferriten decreased hope that he will work on that more and more

and what is SQUID test i havent heard before of it.

thanks and regards,
jatinder kewlani
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: Andy Battaglia on December 05, 2008, 04:25:22 PM: Hi Jatinder,

You can read about the SQUID test at posts at http://www.thalassemiapatientsandfriends.com/index.php?topic=86.msg379#msg379 and
http://www.thalassemiapatientsandfriends.com/index.php?topic=2163.msg18546#msg18546
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: Manal on December 06, 2008, 01:37:49 AM: Sharmin, congratulations my friend, very soon he will be below the 1000, i am so happy :hugfriend

manal :congrats :congrats
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: Sharmin on December 06, 2008, 02:02:30 AM: Thank you my friends,

We would not have been here without your help and support. I am so glad to be sharing this with you guys :hugfriend :hugfriend

It is strange how we had been taking little A to Oakland for years for the annual SQUID test (except 2006 and 2007) - but it never occurred to us that we should see Dr. Vichinsky. I am so glad that Andy suggested that we repeat the SQUID and meet with Dr. Vichinsky too - I can't believe that we had been overlooking this all of this time. Being under the care of Oakland Children's hospital has changed things for the better for us. Had we not started the combination therapy and treatment for antibodies we were headed for trouble. The iron overload could have led to liver, heart or pancreas problems. Also considering what age little A is, it would also have interfered with his growth and development (he has grown 4cm since beginning the treatment and gained 3kg in weight). I am so glad that the doctors in Oakland are working to stay ahead of these problems. My hope now is that others learn from our experience. Many people have contacted me about antibodies - I really hope that they stay on top of the situation - especially especially the chelation.

Thanks again my friends, I love you all :hugfriend

Sharmin
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: nice friend on February 04, 2009, 10:21:02 PM: Hi Jatin ,
it's just to remind you , its 2 months and 4 days has passed = 31+31+4= 66 days , and 54 days remained ... keep it up JAtin you can do it .... i m waitnig to hear the good news of your Ferritin Drop ... come on budy ... :cheer :thumbsup :goodluck :goodluck :goodluck :high5 :clapcheerboy :clapcheerboy :clapcheerboy :clapcheerboy :thumbup :thumbs :clapcheerboy

Best Regards
Take Care
Umair
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: Zaini on February 05, 2009, 08:54:12 AM: (http://i297.photobucket.com/albums/mm220/ZAINY_2008/goodlucksmiliegif.gif)

Zaini.
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: devesh1982 on April 26, 2010, 01:52:56 PM: Hi,

I'm from the UK and my ferritin is currently 477 (blood test taken on 26/04/2010). My ferritin dropped as low as 197 but that was my fault as I didn't check my ferritin for months.

I am on combined treatment of Desferal and Deferiprone, but my treatment has been put on hold as my ferritin is too low so once it goes above 500 I am on a bit of a holiday.

I have felt both sides of the ladder, very high ferritin and very low ferritin now. In 2003 I developed iron overload in the heart and liver which caused me to go into cardiac failure. I don't know how I managed to survive it but I did and then was on the 24 hour a day desferal infusion for 5 years and only then my ferritin came down to around 1000.

My advice to you is don't let your ferritin go above 2000 if you can as the complications that come with it put a complete halt on your life and you never feel the same after.
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: Waleed on April 26, 2010, 05:01:17 PM: Quote from: devesh1982 on April 26, 2010, 01:52:56 PM
Hi,

I'm from the UK and my ferritin is currently 477 (blood test taken on 26/04/2010). My ferritin dropped as low as 197 but that was my fault as I didn't check my ferritin for months.

I am on combined treatment of Desferal and Deferiprone, but my treatment has been put on hold as my ferritin is too low so once it goes above 500 I am on a bit of a holiday.

I have felt both sides of the ladder, very high ferritin and very low ferritin now. In 2003 I developed iron overload in the heart and liver which caused me to go into cardiac failure. I don't know how I managed to survive it but I did and then was on the 24 hour a day desferal infusion for 5 years and only then my ferritin came down to around 1000.

My advice to you is don't let your ferritin go above 2000 if you can as the complications that come with it put a complete halt on your life and you never feel the same after.

very happy to hear that and cheers to you mate . u r a role model really. My iron is i guess 1900-2200 and im going to start desferal + exjade from tonight ... previously i ws using feriprox + desferal.had no side effects but they gave me exjade. I want my iron below 500 and u all guyz r a model for me really :hugfriend because ferriprox is no longer available in my area so
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: Lena on April 26, 2010, 05:24:15 PM: Hello devesh,

In my Unit we do not stop chelating when having this ferritin level. Mine has been down to 45 and I never stopped chelation- in a little slower rate maybe, but complete stop? no. Never. Of course, we are very closely monitored to do that.

Lena.
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: Waleed on April 26, 2010, 05:55:23 PM: Quote from: Lena on April 26, 2010, 05:24:15 PM
Hello devesh,

In my Unit we do not stop chelating when having this ferritin level. Mine has been down to 45 and I never stopped chelation- in a little slower rate maybe, but complete stop? no. Never. Of course, we are very closely monitored to do that.

Lena.

Lena whats the unit for ur 45 ... is it ng/ml ? or what?
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: Lena on April 26, 2010, 06:17:36 PM: Waleed,

I do not understand your question...
When saying Unit I mean the Hospital where I go for my transfusions, the Hospital Unit and 45 is my ferritin count.
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: Zaini on April 27, 2010, 05:30:52 AM: Lena,

Waleed is talking about measuring unit of ferritin,i guess its ng/ml right?

Waleed,

I guess its ng/ml ,As Lena has maintained her ferritin with in normal range .

Zaini.
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: Waleed on April 28, 2010, 04:31:21 PM: zaini is right ... is it 45 ng / ml ??? it wud son b touching the lower limit then :huh
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: Lena on April 28, 2010, 05:24:13 PM: Thank you, Zaini. You are right.

It is within normal range, Waleed.We'll see what comes next, as I am due for MRI next week.

Lena.
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: Manal on April 29, 2010, 12:54:31 AM: Good luck Lena :wink

manal
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: Lena on April 29, 2010, 04:13:32 AM: Thanks a lot, Manal. :hugfriend

Lena.
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: Bobby on May 06, 2010, 02:46:54 AM: I just got my results this week. Mine is around 1600. My Dr. wants to start exjade at 20mg. I should be recieving it soon. Thanks to you all, I know alot about the medication already.
Title: Re: WHAT IS YOUR FERRITEN LEVEL
Post by: 7assan on June 04, 2010, 07:36:00 PM: my bro s ferritin is 1273 win he was smll and now the ferritin level is steel between 2000-1000 never gos up and down