What's your ferritin level?

Thank you Sharmin 

My father will have an other blood test in two weeks (i guess) and we will hear the results the other week. Then they will do a PET-scan. They wanted to do this scan two weeks back, but my father did not want to have one because my two weeks of exams started at that time. We'll see. It can not be skin cancer, so i still hope the tests were invalid.
I dont think I will go to 4 weeks forever. I know I must not be to enthusiast.

Hi Dore,
  for your father's PET-Scan

Best Regards
Take CAre
Umair

Dore,

                         


Zaini.

Thank you

Btw instead of Superbowl I watched the men final of the Australian Open! Finally my dad told me that I can buy a ticket for the 36th ABN AMRO World Tennis Tournament in Rotterdam, NL. Federer is not coming so I will go to one. I cant wait untill they announce the program. I want to see Rafa and not Djokovic.... I see he is not coming, but I want only see how Nadal and his opponent are playing    So dad told me yesterday that I must go today to the local hospital to let them check my hgb....  ..... it starts 9th feb; monday  One can't fall in sleep with a ticket of €70...

Wishing your dad and you all the luck . Please keep us updated

manal

I will do that.I dunno when his appointments are, so I will wait untill i found out. Tomorrow I will hear mine new results and I can not wait, but I am so scared that the ferritin wont be decreased.... I think the ALAT, ASAT and creatine will still be blocked because doc must seen them first. I have an appointment with him the other friday (next week). I wanted to buy some food for tomorrow in the hospital. When my hgb is this low I need some extra food in stead of the bread with cheese from the hospital. Things are a way too expensive in that area.. I can not go because it's raining (bike) and I dunno waht do buy. Owh, about the tickets. I think that dad want me to go to one; tickets are only €18 or €24 and for the final €44  Now I need a plan to convince my parents. Things will be very difficult, because there is still school for me and work for my mother. To confess: I never go out, so I think it is allowed to go out for one time...

Hi Dore ,
Wishing You and your Father all the best for health and everything , may God bless you and your father with good health and everything that you need ....

Take Care
Umair

OK, here we go:

Oh my flurry. Some resultis are missing. The results of the first tx of 2009. I will give you the latest Dec 2008 update

22th Dec:   2354
4th feb:     2359

I have been a bit naugthy since then. I started to eat more red meat to eat while I had problems to eat. I always increased my fruits intake. To be short: Saturday I will increase my dosage of Exjade to 1375mg. *The way back home is always long, but if you keep close I am holding on* Thank you, Dore

Dore, i think that you will start seeing decreased levels of ferritin when you reach the 30mg/kilo dosage. Good luck Dore

manal

Dore,

Good part is that your ferritin level is not increasing,i know not decreasing can be annoying,but as Manal said you'll see a positive change soon 

Zaini.

Thank you both . Since two weeks I take 30mg/kg, but my weight is swinging a lot. Yes, it really annoys me. It may sound strangem but reading books really helps me. Books make me able to create my own fantasy world and let me forgot anything. I am on Exjade for 6 months now. I had a meeting with my counsellor and I talked with her about my situation. It was finished and then she said I am sure it will be done in a couple of months. I tried to say that it wont work like that, but she had no brain cells left for that.  (She is 28 btw, so there might be hope, sorry.).

Dore,

Best of luck getting your ferritin levels down.  Actually, your ferritin levels right may not reflect your iron levels - it may reflect the level iron that has been released from your organs.  For that reason, I think that the ferritin levels are quite good.  You may see a sudden drop in SF in the future when it is all excreted.  I also wish your councelor luck in getting new brain cells 

Sharmin

A good a question:

By patients with hemochromatosis they check the:
*ferritin
*transferrin(e)
* serum iron
*TSAT% or is that TIBC?


Let me try it:
"Serum iron" measures the amount of circulating iron that is bound to transferrin.  Iron and total iron-binding capacity (TIBC) are measured together to identify how much iron is being carried in the blood.

"Transferrin" represents "iron in transport."  Transferrin is found in blood.  Normally it is 25-35% saturated with iron.

"TIBC" or "total iron binding capacity" is a measurement of all the proteins available for binding free iron in the body.  Increased TIBC may indicate iron deficiency anemia. 

"Ferritin" is "iron in storage"

Question: Do they ever measure more than ferritin by persons who are getting lifesaving transfusions? (by visitors of these forums)

In my case we are almost sure that I got hemochromatosis one and two. But they only measure my ferritin. This time I got the lab paper at home so I can look at all tests which are on the paper. My dad has hemochromatosis, but he has not any gene (C282Y for example)  of hemochromatosis one and never had a transfusion in his life. But they do always a full iron panel from him. I know it is because he is plebbing, but I sometimes wonder why they do not do it with me. Unnecessary information? Maybe, but I like facts.

Dore

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.