Elevated Ferritin Levels

[RobertBeWell]

While waiting for my specialist appointment in June, I talked to my primary care doc about some tests that I wanted done, that I knew the specialist would probably order anyhow. Specifically, I wanted to know my genotype and also I wanted an iron study.

Genotype as expected: 1a.

My iron levels are all on the high end of the normal range (like right on) with the exception of ferritin, which is about 3 times normal. My doctor didn't seem overly concerned about this... he said it may or may not be an indication of excess iron stored in the liver. I was taking an iron supplement in my multivitamin, as well as consuming 2-4 serviings a day of an iron fortified cereal. I have removed both items from my diet.

Anyone have any information on how long it might take iron levels to drop once the source of the excess is removed? Since iron is a metal, and you always hear that metals are slow to get rid of... I'm wondering if it might not take a good long time to get this under control.

Anyhow, he just advised me to avoid excess iron, and followup with my liver doc as scheduled. Said nothing to be overly concerned about, that iron levels are pretty commonly elevated in Hep C patients.

Pointers to articles or personal experiences appreciated. I've read most of the stuff in the archives on this board.

Thanks

[RobertBeWell]

6-12 months.... that's kinda what I figured. I have another iron blood test in a month.. I'll see what happens.

Thanks!

[GSDgirl]

I also had PCT and it was awful!!!!!  I treated, finished 2 years ago and cleared.  I an so glad Trin is here as she explains things so much better than me

Denise

[Kristina538]

When my ferritin & iron levels were high, I did the same as you, and deleted supplements/food high in iron from my diet.  

Although, apparently it takes your system a very long time to clear excess iron deposits, my blood tests (iron/ferritin) came back to normal reasonably quickly with the changes I made (within 6 - 12 months).   I didn't test positive for PCT or hemochromatosis, so neither were a factor.  

[Trinity4]

PCT is one of the hepatic porphyrias. Large amounts of porphyrins build up in the liver when the disease is becoming active. The disease becomes active when acquired factors, such as iron, alcohol, Hepatitis C Virus (HCV), HIV, estrogens (used, for example, in oral contraceptives and prostate cancer treatment) and possibly smoking, combine to cause a deficiency of UROD in the liver. Hemochromatosis, an iron overload disorder, also can predispose individuals to PCT.

Symptoms
The symptoms of PCT are confined mostly to the skin. Blisters develop on sun-exposed areas of the skin, such as the hands and face. The skin in these areas may blister or peel after minor trauma. Increased hair growth, as well as darkening and thickening of the skin, may also occur. Neurological and abdominal symptoms are not characteristic of PCT.

Liver function abnormalities are common but are usually mild, although they sometimes progress to cirrhosis and even liver cancer. PCT is often associated with Hepatitis C infection, which can also cause these liver complications. However, liver tests are generally abnormal even in PCT patients without Hepatitis C infection.

It is recommended that patients with PCT be tested for HCV infection. This is done by a blood test that detects antibodies to the virus. If HCV infection is found, it may not change the treatment of PCT (by phlebotomy or low-dose chloroquine). Treatment for PCT is highly successful even in patients with HCV. Therefore, it is reasonable to treat the PCT first and then look into treatment for HCV later.

There are reasons not to treat the HCV infection before treating the PCT. HCV treatment with alpha-interferon and ribavirin is available but is often not effective. Also, liver damage progresses slowly if at all in many people with HCV. However, once the PCT is in remission it is important to assess the amount of liver damage the virus has already caused and to have follow-up visits to a doctor to monitor the liver. In some cases it may be important to treat HCV infection to try and prevent progressive liver damage.

[RobertBeWell]

Ahh, I believe you are referring to hemachromatosis (spelling?), a genetic disease in which the body is unable to regulate the amount of iron taken in.

I did ask my doc about that one, he said it's possible, but with my actual iron levels being OK, probably not. He said that my hepatologist might test for it, but for right now, there wasn't much point doing anything till the specialist starts ordering up whatever she wants done.

Haven't found anything related to cutting treatment due to iron issues - some reading I;ve done seem to indicate that high iron levels hinder treatment somewhat... what exactly do you mean by "half the normal treatment" ??

[RobertBeWell]

PCT? Not familiar with that term, can you elaborate?

[hardluck]

Hi,Rob.same with me.found my iron was too high,thats how i was found to have Hep''c''.after further testing.with me i was told that i have 2 geenes from my parents as iron levels are passed to you by your parents at birth.my platelet count is low as well and i can only have half the normal treatment not to cause more damage.bit of a nightmare really.
Dai..

[Trinity4]

I had high ferritin levels but was also diagnosed with PCT.  My hepa was not concerned with my high ferritin levels so much as the saturated iron and whether there was an accumulation in the liver.  Many people with hcv struggle with high ferritin or higher iron levels due to the liver's inability to process iron adequately.
I was treated for the PCT with phlebotomy which reduced the ferritin levels and additionally dropped my hgb from 17 to 12.  Biopsy indicated no accumulation of iron in the liver.
We do want to see acceptable ferritin levels but most hepa's are not overly concerned if it is higher than normal.  Your iron levels are ok and that's the most important thing.

Trinity