Ferritin level
 

4months back my father was transfused with 2units of blood ( First transfusion ) and post transfusion his Ferritin level was at 1495. 4months later he got his ferritin test again and his ferritin was at 2500 which is really confusing. Cant understand why the ferritin has gone up w/o any further blood transfusion. Is it because he is taking Arnesp 200 every week which is causing this? Any insight will be helpful.

Serum iron - 259 Total iron binding capacity - 295
Saturation level - 88%
Ferritin level - 2500

He should be checked for hemochromatosis, a hereditary iron overload disease.

Also, ferritin is an "acute phase reactant" meaning that it can fluctuate very easily. Usually infections or any inflammation will elevate it. Even something as minor as how they handled the blood sample can elevate the reading. But 1495 after two units is high and you should look to rule out hemochromatosis.

Ferritin level
 

Thanks Marlene for responding. Before transfusion his Ferritin has always been around 300 levels. Is hemochromatosis something that triggers after transfusion?

300 wouldn't be that high depending on how low his red cell were at the time. But if it was 300 with a normal HGB level, then it's bordering on too high.

Hemochromatosis is not triggered by transfusions but it can present later in life.

Just to confirm, he's only had two units transfused in total right?

Yes he has had only 2 units of blood.

Also, if your father donated blood frequently before his illness, then then the hemochromatosis would have not been apparent. They manage that disease with 3 - 4 blood donations per year to keep the iron down.

Biggest concern is that even the doctors have not been able to explain it well and it makes us wonder if we need to start chelation therapy right away or not?

Recently my ferritin went from 890 to 4200 when I had the flu. It was back down to 1420 when I got over being sick. Ferritin is an inflammatory marker and I take exjade for transfusional iron overload which usually keeps it below or at 1000.

Good luck,
Deb

So ferritin can go up because of infection ? But i dont understand why the iron gone upto 259 just after 2units of blood.

hello, yes ferritin is a inflammation marker... Has your father a form with sideroblast....?

Yes he has sideroblast

When he was diagnosed at that time he had 21% sideroblast. Couple of months back sideroblast has gone upto 32% . Has this something to do with high Iron? Is that why his HGB has been falling?

sideroblast
 

hello,

yes, the sideroblastic anemia type increase the number of serum ferritine level. It's a dysfonctionning in the heme system and in the utilisation of iron for the production of hemoglobine.
Infections can also increase the ferritine number.
My boyfriend was diagnosticated with RARS-T in 2011/01, a form with sideroblast, his ferritin level was 933 and iron saturation 90% in februari 12and we have decided for testing a new food consumption. We're eating now biological fooding, no beef, a lot of vegetables, a lot of fish (2 of 3 /week), chicken and 2l water a day. The ferritin is decreased : 650 now and iron saturation 73%. He's non transfusion dependant hemo 11 ( with transfusion, food cannot have any influence).

Hope that can help, sorry for my bad english.
béné

In case of sideroblast is there a theory which says that iron chelation can help improve hemoglobin levels?

gb improval
 

There are some theories and some cases where chelation can help (I've a study read three months ago. Normal, in lowest risk mds (low of int 1), It is common to begin chelation when your ferritin is above 1000 but it is not a "light" treatment. For energy and antimitonchondrial oxydation, your father can also take coenzyme Q10 reduced form.
Béné

Do the chelation therapies have lot of side effects? How long does it take for the iron deposit to start effecting the organs?

Iron
 

Hi Vikasgoyal,
As far as I know Exjade (a pill) now is the most common iron chelater in the US. It is important to start with a low dose because the drug can cause high creatinine (a kidney test).

It takes years to develope damage from iron in the liver, heart and other organs. My ferritin value was 5600 a short period July 2010 but my liver tests have never been affected.

I have tried Desferal (intra venous from a pump during 4 days after transfusion), Ferriprox (a pill that decrease my WBC) and Exjade that decreased my WBC so I had a low dose). When I needed 2 units of blood every week the combination of Desferal + Exjade was not effective.
Kind regards
Birgitta-A
73 yo, dx MDS Interm-1 2006. Supportive therapy until 2010. Since then positive response to Thalidomide + Prednisone.

Confused about if we need to start the treatment
 

As i mentioned in my previous messages, although my father's hgb is currently at 7 but physically he is quite active and is able to do his day to day work. For some reason his ferritin is high which currently is at 2500 althought he has just taken 2units of blood( 4months back ) untill now. Our confusion is whether with his condition, is it the right time to start him on medicine like Vidaza etc in order to improve his hgb and secondly also consider starting chelation therapy in order to manage his iron overload? Or should we manage his situation with blood transfusion only? We are scared to start the treatment as we know that it comes with lot of side effect. Your suggestions will be very helpful.

Iron overload
 

Hi Vikasgoyal,
It is common to start iron chelation if the patient has low risk MDS like your father. He probably has many years before him. Chelation can start when the ferritin value is more than 1000.
Kind regards
Birgitta-A

hello :-)
There are side effects of chelation (kidneys failure) but I think that your doctor will that keep under control (regular blood analysis with check of kidneys parameters). But for me, the best is your father's ferritin level once more test... inflammation and virus can also caused high ferritine. I sincerely not thonk that level ferritin can so rapidly increase without any transfusion (of two). for my boyfriend from 450 to 933 in 4 years, now 650 thanks to the food. Hope that can help; béné
If you have other questions, don't hesitate.

Thanks a lot Brigitta and Gramous. So your recommendation is not to start with any drugs apart from iron chelation which makes sense to me.

I can only speak from my experience where my Ferritin level was very high during a serious infection pre MDS. I was told that it was a marker of infection/inflammation.

His ferritin level might be lower next test. It might be an idea to wait awhile and get an idea of what the level does on it's own first. If it went back to normal and he was taking exjade, that probably wouldn't be good either.

Deb

Just after first transfusion his Ferritin was showing 1495 and after 4months w/o anymore transfusion its showing 2500. My concern is that it has been high both the times and we aint sure yet if its something else that we aint aware of

It's probably high due to inflammation, not the transfusion.

Deb