Test for ferritin

[Chirley]

Hi,

I'm not on any iron chelation and I've had 20 units of blood since my last ferritin level which was over 2,000 to the best of my recollection.

For those people who are transfusion dependant, how often do you have ferritin levels done?

Regards

Chirley

[Birgitta-A]

Hi Chirley,
My ferritin level and two liver tests (ASAT and ALAT) are controlled once a month. The liver tests have always been OK - the first years they controlled more liver tests like bilirubin, GT and ALP but since my liver works well they only control ASAT and ALAT now. The first sign of iron intoxication is increased ASAT and ALAT.

You know they don't really know if MDS patients do better with low ferritin level but all types of patients with a hematological disease that are going to have a SCT ought to try to get the ferritin level down before the SCT.
http://www.haematologica.org/cgi/content/full/95/3/364
Kind regards
Birgitta-A
142 units of PRC since dx May 2006. Desferal iv 4 days with transfusions since Aug 2007. Exjade 2 tabl á 250 mg since Aug 2009. June 2010 after transfusions every week ferritin 5600. Thalidomide 50 mg 4 caps/week and Prednisone 5 mg/day since June 2010. Latest transfusion 10th Sept and latest ferritin value 1800.

[riccd2001]

I have a ferritin test every three weeks. Currently off Exjade owing to a recent problem with kidney stone and elevated creatinine. Ferritin levels now approaching 1000 again.

[Chirley]

Hi again,

My last ferritin level was 4,700 but I no longer require transfusions and haven't had one for 6 weeks now. The plan is to do venesections to bring the ferritin level down because I'm reluctant to take chelators.

My question is to do with liver function. My AST and ALT have been raised for many months but were stable. Now that I haven't had a transfusion for 6 weeks the AST, ALT and now the ALP as well, are increasing every week. My doctor hasn't mentioned the increasing levels to me and I only found out today that my LFTs were increasing because I was given a copy of the blood test reports which usually only gives the haematology results but today included the biochemistry results as well. I didn't look at the reports until I arrived home and it was too late to ask any questions.

It seems to me that if I haven't had a transfusion for 6 weeks but I have started copper injections 6 weeks ago that there are only 2 possibilities. One is that the copper is also accumulating in the liver and exacerbating the ferritin overload or the 2nd one is that the ferritin has caused liver damage which is now progressing without more ferritin insult.

Has anyone had abnormal LFTs from increased ferritin? Did they improve when the ferritin dropped? Any opinions on the copper theory?

Regards

Chirley

[akita]

Hi Chirley,

transfusions can cause a liver damage very early. Liver Biopsy or Magnetic Resonance Tomography can show the damage. I had a MRT done shortly before my SZT after having received 25 Ery-concentrates and the results were showing that there was aleady a damage in the liver.

How many transfusions did you get in sum?

How high was your ferritin level before you started with the transfusions?
Some MDS-people have an elevated ferritin level because of other reasons, not because of transfusions.

Kind regards,

Margarete

[Marlene]

John's ALP remained elevated for quite some time....years actually. Our doctors said it was because of the bone marrow. This enzyme is produced in the liver, kidneys, intestinal mucosa and bones so the elevation can come from other than the liver. Any disease or destruction of these can elevate this enzyme in the blood.

Here's a good link on ALP. If can also look up other lab test on this site. Look up Liver Enzyme tests and you see that one of the LFT's can be elevated as a result of Wilson's disease, which is a disease where there's an accumulation of copper in the body. But basically, there are other blood test needed to further evaluate the function of the liver.

http://www.drkaslow.com/html/alkaline_phosphatase.html

I also posted on another thread where the zinc to copper ratio is important. Iron, zinc and copper require a delicate balance. Your doc should check your zinc levels as well as the copper/zinc ratio.

But to directly answer your first question, John's liver enzymes were never elevated when his FE was high. His was high like yours.

[Birgitta-A]

Hi Chirley,
When my bone marrow almost stopped working during the spring 2010 and I got blood transfusions every week my ferritin level increased from 1400 to 5600 June 2010. I was receiving Desferal for 4 days with every transfusion and took Exjade 500 mg/day since several years.

My liver tests had been OK but then my ALT increased to 3.35 (AST 0.63). The high ferritin and ALT test results made me accept treatment with Thalidomide. After one month the ferritin value was 2700 and the liver tests OK. Now after 7 months with Thalidomide (and Exjade) my ferritin value has slowly decreased to 1400 again.

High ferritin levels can give elevated liver tests and you might be right about copper giving the same effect.
http://oehha.ca.gov/water/phg/pdf/coppr_c.pdf

Have the copper injections showed any effect on your neuropathy yet?
Kind regards
Birgitta-A

[Chirley]

Hi,

I forgot to mention that my zinc level was a little raised as well but that I had taken some zinc tablets last winter to ward off colds. The Prof of Metabolic Medicine said he didn't think I took enough zinc to account for the raised level and that it was more a cation/metabolic problem to do with cu/zn ratios. I'm not an academic and the chemistry of it all is beyond my capability.

My cu level is now 15 (13-25) so has finally reached normal levels so I have been changed to oral copper sulphate this week (hated the needles).

The good news is that I feel as if my ataxia has improved. I still have to use a walker most of the time but I can walk around my own house occasionally without assistance. I was at the hospital last week collecting my copper needles from the pharmacy and I met my Neurologist accidently and he got me to walk with and without the walker and he said that he thought I had improved as well. (this was done in the foyer of the hospital and was a little embarrassing in front of everybody). I also feel that my thinking has become clearer, it used to feel as if my head was full of cotton wool and I used to blame the anaemia. I mentioned that to my haematologist yesterday and he told me that it would have been from the demyelination in my brain. That was a shock, I didn't know that I had white matter lesions in my brain, noone had ever told me. I was only told about the spinal cord lesions.

The downside is that my lymphocytes remain low and my neutrophils that had returned to normal have dropped below normal again and my platelets have fallen as well (for the second blood test in a row). The haematologist says this is a "little worrying" and that I'm going to have another BMB in about 2 weeks time. I have my fingers crossed that it shows the MDS was really copper deficiency and that the blasts etc have returned to normal.

Thanks for the link Birgitta, the interesting bit for me was the mention of copper causing migraine because I have had three nasty migraines in the last couple of weeks and prior to that I only had a migraine once every 2 to 3 years. Thank goodness my migraines are self limiting and only last an hour to an hour and a half because I lose my sight when I have them, the actual headache component lasts longer but that responds to paracetamol.

I hope you all had a lovely Christmas. I had a very quiet one because we had floods here and the only people who could come were my parents. Everyone else was stranded in their homes by flood waters. I'm still trying to eat all the food and I don't like turkey much to start with.

Regards

Chirley

[cathybee1]

It's already New Year's eve there, isn't it? Happy New Year, Chirley, let us know how you do on the copper supplements and how your BMB turns out.

[Chirley]

Thanks for the New Years wishes. It's 5 hours 20 minutes to New Year. I can hear my neighbours starting their barbecues and smell the steaks etc. The weather here for the last 2 days has been magnificent. Blue skies, stiff breeze and Ts of around 26-28 during the day.

I feel sympathy for other people in my State (Queensland) who have huge flooding. The news on the TV this am said that the flood waters cover the area of Germany and France combined. The logistics of providing fresh water and food to people spanning that kind of area would be very difficult and Government workers and volunteers have to be commended for their efforts.

Happy New Year everyone.

Regards

Chirley

[cathybee1]

Chirley, I saw a bit on the news this morning about your flooding. It looks really awful, I went through flooding and landslides in the late 90's, they are devastating and deadly, and your country has gone through a lot this year. I'm glad you are out of the worst of it.