What's your ferritin level?

Hi Eponine,

Please do keep up on your desferal. I know it's hard and after your bad L1 experience it's your only current choice, but you gotta keep up. I can tell you to do it for all the people who love you and that should be a huge reason for doing so, but even more, do it for yourself. You've got lots of hopes and dreams for your life and it's up to you to make them reality. It's never easy but nothing ever is in life. We're all here to support each other and help each other out, and some of us were lucky enough to meet you in Dubai and most definitely want to meet you again at the next conference. 

Desferal is today but tomorrow it may be something so much easier to take like Exjade. Is there any word on it coming to Singapore? Trials have just started in Australia so it may be soon.

Thanks so much for your encouragement. Really mean alot! I too know that I have to persevere on with Desferal. There has been 2 deaths here among that small % of thals that we have in tiny Singapore from heart failure. And they are 2 people whom I know and have known them from young though not close. It's a wake up call. Really. I know even if not for myself, I have to fight on for my loved ones. I wanna get married and have children!!!  Though to and with whom, I'm not sure yet... 

Exjade here in Singapore is in the process of getting it approved. However, it is not easy becuase authorities would say that we already have L1 and desferal so why the need for Exjade... but anyhow, we are keeping our fingers crossed. I'm not too much of a hurry to start on Exjade though after my experience with L1. Just want to take a wait and see approach first.

My ferritin level was 1267 in 6 january and 1603 in 28 march. You can think that I didn't chelate very well. On the contrary, I actually did it regularly. I believe dry iron (I mean iron in organs) dissolved that resulted in ferritin to be increased.

I have had ferritin measured once in a three month.

Hi all,
It's really interesting to read what everyone is using for a chelator and what ferritin levels are. I usually use desferal 4-5 times a week and my ferritin level was still at 3064 in February. I get it checked every 3 months. I hope I can get it down lower. I'm going to Chicago at the end of May for tests and a check-up. Keep pumping! Jean

 

Well just found out my ferritin resuls today before my transfusion and my ferritin was 253 the lowest its ever been....

People its hard but you can all do it if you persist in what your doing...Keep up the pumping and who ever is on L1 take it religiously..Cause it can happen....

I have been stopped in using my pump now for 2 mths....

 

Well just found out my ferritin resuls today before my transfusion and my ferritin was 253 the lowest its ever been....

WOW!!! Well done ......

To Poirot,

Thank you..Its a milestone for me...I hope this will give everyone the enthusiasim to not give up on doing their pumps...Its a long haul yes, but the results are worth it...

Great news, Smurfette! :five

Hi All

Today we got the result of Feretin level for our child.
Its 893. Dec 2005 it was 2177. She is on the combination treatment. Twice daily Kelfer, 2 times weekly 10 mg desferal and three times 5 mg weekly.

Drs has advised to continue the same.

Bye

That is great news! 
Please do your best to keep it below 1000.  Development will be fairly normal if you can.

Hi everyone,

My son's doctor used to check his ferritin every 3 mos. He has pretty much been on daily desf since he was a toddler.  His ferritin numbers had dropped so low that his doctor decided to stop desf for a while and continued to monitor his numbers.  For us it was great he had been of off desf for about a year and his numbers remained low. He had finally reached the age to start doing liver biopsies.  It was there that we discovered that even though the numbers were showing low, the iron was damaging his liver, so much so that there has been talk of a possible liver transplant.

I'd like to know if anyone has had any similar experiences with ferritin levels not being an accurate indicator?  I also would like to know does anyone have regular liver biopsies?  If not I would recommend that you discuss it with your doctor and don't just rely on ferritin levels.  I believe that if we hadn't relied so much on those numbers his liver would not be as bad as it is today.

Bye,
Lily

I'm a Thal Intermedia and I'm not transfusion dependant. Got transfused once.
I have a question regarding my ferritin level. My level has been around 500. It goes in 400s and sometimes in low 500 with saturation 40%. I'm a lil concerned as I'm not on any chelation therapy.
The only tests I get to evaluate my ferritin level are Serum Ferritin and Saturation % and few other iron tests.
Is it reasonable for me to assume that my ferritin level is not bad. I'm not on any chelation therapy so far. As per my doctor, chelation therapy is started when level reaches around 1000. Does that sound reasonable.

I never got any biopsy or scan test.

Would like to hear your suggestions.

Thanks,
Hallu

Chelation is never recommended until the ferritin goes at least to 1000. Your level is due to dietary absorption but is at an acceptable level. If you can get insurance to pay for a FerriScan it would ease your mind, but it's very doubtful you have any problem in your organs if that's as high as your ferritin has ever measured.

Thanks Andy. It brings some relief to me.
I always had this fear after reading stories from ppl that how ferritin levels were so off when measured with either scan or biopsy.
My doctor/s never recommended any tests(such as biopsy/scan) on me and also are never concerned with level. So I just thought to take others opinion on same.

Thanks for replying.

--Hallu

Arghhhhh this is such a sore spot for me lately.

What's your ferritin levels? ..............Well up until I had my son my ferritin levels had been kept at below 500 (I had him aged 25) . After I gave birth (which was 12 yrs ago) my ferritin levels were around the 1000 to 1500.
Two years ago I suffered from glandular fever and my ferritin levels went to around the 3000 and then started coming down.

In this two year time frame I have neglected myself due to me looking after my very ill husband and my ferritin levels went to 4000 and on the increase. I went to my doctor requesting I go on L1. I have started L1 combination therapy with Desferal and I have not mastered the desferal part yet. One would think that after doing desferal for the past 20 yrs you would have this down pat. However I can't quit get the a grip on things and my ferritin levels have gone up to 7000 since starting L1. ( i have been told this will come down but I must also use desferal to aid this)

I confess I hate doing desferal and for me being bought up as a very compliant patient it bothers me to see me not compling the way I should and after helping many patients overseas and saying how we must all complly.

I hope I snap out of this pit I have fallen into and get out of it and kick some butt with lowering my ferrint levels. I have a very caring family and also work collegues that remind me "Have you put your pump on ?"    (thanks for your support - you know who you are)

Miaki