326 lowest ever :) YAY
Well just found out my ferritin resuls today before my transfusion and my ferritin was 253 the lowest its ever been....
Well I have come with an update on my ferritin levels. Since writting to you in my last post dated 31st August 2006. My ferritin levels went up to 8200 around there and now with my latest reading I have managed to get them down too 4200 Yihaaaaaaaaa :cheer :cheer :cheer :cheer
Still, I have some work to do to get them way back down to under 1000 but I'm proud of myself getting them down to this. I think we all should be proud of ourselves for trying to maintain low levels. It's hard generally speaking to maintain a job, family and our social side of things and to be able to maintain the health reagime that is required for patients with a chronic illness I think we should all give ourselves a pat on the back for doing so well.
Also some other excitting news that I am starting Exjade this week. (stopping L1 and Desferal) A dream come true after doing my pump for the past 29 yrs ......I hope ALL patients around the world get their dream come true soon.
3,0 g Desferal... 7 day/week ... in 10 hours with my pump...
Unfortunately my level is 2600. I wish i could be at 500 wow that's pretty good. Does anyone know of a diet i can follow to reduce or delete my iron intake?
Well my ferritin went down to a low 152 and that is only with L1 (deferiprone)
Now at the moment its sitting at the 300 something mark...
I havent used my pump in over a year or so...Not much liver iron either nor any in my heart..I have been using my pump previously for 29 yrs...
:)
Latest report says 465ng/ml. Its been two months am off chelation.
\peace/
Treatment of iron induced cardiomyopathy requires close follow-up and significant effort until the patient is stabilised. If the patient survives the acute phase, the potential reversibility of heart injury by heart iron removal promises an outcome better than that seen in the past in such situations and may be better than that seen with other causes of cardiomyopathy with equivalent clinical severity in the general population (29). However as Hippocrates stated, it is better to prevent than to cure. Today the great challenge in TM patients is to achieve even better results in preventing heart injury.
qoute to HalaHi Hala ,
Hi nice Friend.thanks for the welcome .i hope to hear good news about you always.NICE POEM!!!!
Hi jlayarta,
Welcome. You must increase desferal dosage or start ferriprox together with desferal. I do not want to be harsh on you but 9000 is too high. 30 years ago when I first started desferal my ferritin was 8000. I am trying now to maintain my ferritin level at about 100.
If you increase desferal dosage your ferritin will be dropped. You should enter an aggressive chelating scheme:You can even try 8-10 desferal vials in 60 ml water of injection.I did that when my ferritin level reached 1500 and in 3 months it dropped to 45, along with ferriprox of course.Of course, this is what my doctor has given me.I do not know about yours.Some doctors follow less aggressive schemes.
Discuss new scheme with your doctor. But do you pay for desferal? because here our insurance health system pays for it.Anyway.
Try to increase dosage, if your doctor allows it.Andy has posted the desferal dosage you must take according to your body weight. I think it is in" iron chelation corner".You will see better results.
Good luck.
My latest Ferritin levels are 95-125 (tested 4 different times/places)!!!
So, I went to the doc to ask if I should be cutting back on Kelfer dosage - and he says NO!
First, let us see the actual iron concentration in the liver and heart - so, I am off to being inserted in a closed drawer again (which I absolutely hate) to get my T2/T3 results.
Poirot
Be glad you have that option. My hospital don't have that stuff. Five years ago they gave me a port-a-cath*. They never noted which one i have, but i can't have a mri-scan since. :whyme
Dore,
Because high ferritin levels in transfused patients already indicate iron overload, these other iron tests are not necessary. Instead, an analysis of the real iron load, using methods like MRI, SQUID and T2* are used to determine the true iron load. In non-transfuing patients, the complete iron panel is used to determine if and why anemia or iron overload conditions occur. In your father's case, the iron panel is used to determine when he should do a blood-letting (phlebotomy) to reduce his iron.
If you also have mild hemochromatosis it does explain your inability to lower your ferritin to the level you would like to see, as you have to deal with iron overload from transfusions and absorption in the intestines.
Update
In February I have had 3 blood transfusions and yesterday I had my first for March. At the second transfusion I had a ferritin of 2386.......now I got a ferritin of 1534!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I still can not believe it. When I found out I yelled through the room of chemo's (and tx). I am so happy. I was very, very ill yesterday, but it's all worth!!!
my last flevel is 1200
What will you do to get it down?
What are you doing now? I mean, what chelation are you on?
Lena.
High scores are meant to be high... :biggrin
Absolutely not! (lt's even bad as bad spelling!)
You gonna get this down. Life is so much better when it is getting down and staying that way. Believe me. To reach 766 costs me more than 14years. It's better to win the low levels with excellent speed!!
Do we got a deal?
:high5
hi!Very good! :yay
Now my ferritine level is 748.my last ferritine level was 1081.
:smileblue
laiba mukhtar
Take care
hi!
Now my ferritine level is 748.my last ferritine level was 1081.
:smileblue
laiba mukhtar
Take care
The use of chelation therapy with autism really does make me wonder about the connection between vaccines with mercury and autism. Many parents swear their children changed immediately after vaccinations but the medical establishment has been adamant in its refusal to condemn putting a toxic heavy metal into the bodies of babies. I am not convinced that any amount of mercury is safe.
I am happy to hear that your children are doing better. Metal containers can partially neutralize Exjade, so all contact with metal has to be eliminated.
The ferritin level should be measured at least once a year I believe for thal major's.
Hi Gina,
How long have you been taking Exjade? Are you on the full dose yet? 30 mg per kg body weight is required to get the ferritin dropping. 5000 is too high so we need to give you lots of support to help get it down.
gr8 achievement PCG .... r u same laiba who took pos in inter exams ??? i read in dawn .. r u ???
Hi everyone,
Hope everyone is doing well. I just have a few questions, Olivia has been on Exjade for about a year now she was started on 375 mg daily. After seeing Dr. Singer in Aug. 2009, she recommended Olivia take 500 mg 4x's a week and 375 mg 3x's a week. So since doing so Olivia's ferritin has gone up and down in Oct. 2009 her ferritin level went from a 1400 - 900. Great!!!! Now, at her last visit her ferritin was back up to 1400. Her dr. was saying that if this becomes a trend that we will raise her exjade to 500mg 7 days a week. I know that the ferritin level is not the only way to measure iron and her squid showed a level of 4.4 ( not really sure what that measurement means ) but I was told that was good. Ok so my question is Do we have to be worried about iron overload at this point? What does that actually mean? How is it diagnosed? Olivia's hospital is supposed to be getting in a MRI machine that will measure the iron in her liver and heart. Should she be checked every 6 months?
Thanks So Much
Kathleen
PS >>> Livi is 5 yrs old and 40 lbs Does 500 mg sound right for her age and weight?
In my opinion, iron from diet in negligible compared to that gained from transfusion (which is already taken care of through chelators). So you better give her body all the nutrients it needs to grow properly.
Also being transfused..... i.e having a high HB eliminates absorption of iron in the gut. In addition you can always give her tea with the meals
manal
For nontransfused thalassemia patients, folate supplementation
(1 mg daily) is recommended, and consuming
a moderately low-iron diet is encouraged—that is, avoiding
iron-fortified cereals and other products and excessive
consumption of red meat. Drinking black tea with
meals is recommended to reduce iron absorption from
food.
For transfused patients on chelation therapy, a low-iron
diet is unnecessary and may decrease the quality of life
for some patients. The amount of iron obtained from
just one unit of packed red cells (200 mg) far outweighs
the amount of iron obtained from a 3-ounce steak (5
mg).
In my opinion, iron from diet in negligible compared to that gained from transfusion (which is already taken care of through chelators). So you better give her body all the nutrients it needs to grow properly.
manal
I agree Manal, I remember posting this message three years ago but didn't get much response. We are learning more and getting out of 'old wives tales' regarding thalassemia.