What's your ferritin level?

I cant remember the exact number but my sister and I had very very high levels so our doctor in toronto made us go through a 24/7 for a year injection. We wore our pumps for a year and it was through our ports. She had to get one put in - I've had mine since i was 4 but recently they took it out...  this october just passed actually. I was attached to it... and I asked the surgeon if I can see it after and they didnt show me. *sigh*  14 years with it and you think they'd maybe listen to my request.

Anyway - I'll have to find out the number exactly... mom should know. :P

hi all

When I was a 10 years old, my ferritin level 8300. I m used desferal 6 day of week and high dose.  Later my ferritin level was around 3500, I began desferal + ferriprox 2 years ago and my ferritin level was 1100. And stopped desferal + ferriprox. I using exjade now ( I start 1 years ago) and my ferritin level is  800. But I had a diabetic 6 years ago.

anyway, I m happy now. sometimes ı have a some problem but ı m try for to be happy. I know, I always make a lot of mistake when I speak English. I want to learn perfect.

Best Regards,

Tayfun

Hi Tayfun!

Remember me? It was me this morning on the Messenger chat. Good to know that you are doing good and using Exjade.

Don't worry about making mistakes in English. No one is perfect and everyone makes mistakes every now and then, even I make many mistakes. Just laugh them away and forget what happened in the past.

Take care, Peace!

Hi all,

As you know I got my S.F checked a couple of weeks ago and the results came 1000+ Which means off the scale for their machine So, I had to re check it through a special cancer hospital in another city. It took more than 15 days for their results to arrive and the results are in...

My S.F levels are at a whopping 8000 (give or take a few hundred )

Talk about being "Heavy weight" champion with real Iron

The doctor has increased my dose from 8 vial per week to 12 vials per week. I know it is still less but just one notch more so that I can comply easier.

I've been also recommended for the oral pills (Deferiprone). Probably the "Ferinill" brand. There is also an issue of my low blood counts that needs to be settled before these pills.

Well, let's see how it goes. I will keep you guys updated.

Take care, Peace!

Hi Sajid,


I sincerely hope that everything will be okay for u ,inshallah,you haven't started defriprone yet?are ur blood counts really low?and about ferinill,please inform me about the cost,is kelfer available there in rawalpindi?zainab is using ferriprox+desferal,,her iron went up to 1800 last time checked 2 months ago as ferriprox was not available here,but now we are working on it and i am praying to get a -1000 when she goes for transfusion in the end of this month,i was reading ferritin levels here,,oh my,people are inspiration here,with as low iron as 157 ,and Sajid u've always inspired me with ur positive approach,please keep lowering your ferritin level, and i f u need, i'll b happy to send you kelfer from here, as it's quite inexpensive,( rs 500 i think,don't know about ferinill though)any ways take care and keep pumping.

 

ZAINI.

Hi Sajid

I am so sorry to hear about this but please keep chelating . I am sure you know how important this is. could the   high ferritin be the cause of the recent health problems???/


Manal

Hi guys,

Yes Zaini, my blood counts are pretty low. I got them checked yesterday and they are as follows:

Hb: 6.8
RBC: 2.55
WBC: 1.8
PLT: 80

So it will be a while before I can start the pills. As for Ferinill, it's just Deferiprone/Kelfer with a different brand label. The foundation imports them and will provide them, so I don't think it is available for sale.

Well, Manal I have an appointment today as well and will see what they suggest. I hope they sign me up for TransX as well. Currently they have only signed me up for Chelation. I am thinking of doing around the clock chelation but I'm running out of painless sites on my gut and will move to other places, such as thighs etc.

Does anyone know how long can (should) a standard butterfly needle last? (Eg 48 hrs etc.) I want to prick my self the least number of times and only switch the filled up syringes.

Well, that's about it for now. I will keep everyone posted.

Take care, Peace!

Yes Sajid,

these are quite low, i hope you are in good hands,i'll pray for you.

LOVE.

ZAINI.

hello sajid

Hope you get better soon. 

takr care

hi sajid

you are right...
its time to do something
for myselfe im a heavywight too (7880)
but for me its oki....
i am normaly over the 10.000s........
but since the spleenektomy i got to
go now only ones in a month to tranx
that helps pushing .......
take care....                         panos

Sajid,
     Your hemoglobin is so low, I don't know how you do all that you do with it so low. I hope you can get transfusions when you need them to get your level up higher. I also hope that you can start the new chelator to help get your ferritin level down. Wish we could all be there to support you, and give you a big hug - you have been such a help to so many on this site.     Despite all your own problems, you have inspired others with your kind comments and helpful information. You are truly awesome, Sajid, and please know that we all care about you very much and wish you only the very best. I'm frustrated that I can't do something to help you except send love and hope. You are amazingl      Love, Jean

Aww... 

You guys are great!

I got a Transfusion today and will get another one on Monday or Tuesday and they will see if I need another one depending on the success of these two.

I'm still concerned about the Iron levels however, since with these Hyper Transfusions it will only go up and don't feel like poking myself again and again for Desferal. There has got to be a simpler solution... I'm going to try to keep the needle in for about 24 hours and save myself a prick.

Well, thanks again everyone. You made me feel a lot better

Take care, Peace!

Good Luck Sajid. Please keep us updated

Manal

Yes Sajid,

i'll repeat what Manal said,please keep us informed,may ALLAH ALMIGHTY bless you with HIS blessings.and please do tell me if u know, that is there any specific reason your counts are going that low,or it just happens after that many years of transfusion??

Wishing you all the best.

ZAINI.

Sajid,

If your Hb continues to stay so low, you might have to do what Panos said and get a splenectomy.

Panos,

When did you have your splenectomy? How is your health since?

And to both of you and everyone else where it applies...Stop slacking and get yourselves chelating!!!