I have beta thalassemia minor, I also had quite high ferriitin level, should I be afraid? what are the effect of having high ferritin level?
funny thing i just saw i wrote on this post seben years ago.I just talked to a blood doctor today i didnt test positive but im finally going for phlebotomy to lower iron. good thing you had the test done as i hope you get the care you need for hemochrometosis
I had been feeling REALLY BAD for about 2 years and been totally blown off by my Kaiser MD. When I switched insurances my new MD found out I had a ferritin level of > 6000. I had the genetic test for hemochromatsis which was positive. The initial test is called serum ferritin and costs about $45.00 if paying yourself.
thanks again....I'll make a note to ask my dr. I just took #21/24 interferon so I'm almost to the end of the lline! I understand ferrin level would be listed under General Chemistry...when I said cbc I was referring to all the test results! Duh....kinda foggy here tonite! Lol
take care....darla
If I understand correctly, you have finished tx and are currently SVR? If that is the case I wouldn't be concerned with your level. High ferritin is not good for those that are beginning or on tx because it effects the chances of SVR. Usually, if the levels are too high they will recommend phlebotomy or chelation to reduce the levels prior to tx. I wouldn't worry about it and the CBC will not show ferritin level. CBC shows hemoglobin, platelets, red blood cells etc, but I don't think ferritin is included in that. Again, all doctors protocols are different so can't say positively about the CBC thing.
Trin
thanks for the info....so on the cbc results it should read as ferritin level?
I'm a bit confused....is it really important to have this level tested?
thanks..darla
I have a lab requistion in front of me for my next PCR and it lists all the blood tests a doctors office usually runs. Under the "General Chemistry" category is Ferritin. It is listed by itself but doctor's offices don't follow the same criteria so not sure if your doc would order the same way. CBC falls under "Hematology" - Liver Panel falls under "Chemistry Panels" and PCR falls under "Hepatitis Panel so it looks like they group them according to category. Hope that helps.
Trin
Can someone tell me what the name of the test is to ckeck your ferrin/iron levels?
I don't think mine was ever checked proir to or on tx.
Correction: My red blood cells and hemoglobin have stayed within normal range.
I had PCT as well. My ferrtin levels prior to tx were around 783. I had 13 phlebotomies before starting tx 3/28. My ferritin level went down to 17 and I thought oh boy, I'm going to be a prime candidate for anemia during tx. My WBC and HGB have stayed within normal range and the PCT has cleared up. Keep in mind, PCT is a chronic disease and is not cured by phlebotomy or chelation. Symptoms can disappear for many years but ferritin levels can become elevated and the PCT can reoccur. 378 is not bad, slightly high but ok. Was the PCT caused by hepC virus? I found out I had hepc when I went to the dermo about my hands and he diagnosed me with PCT. He indicated PCT can be caused by exposure to hepc, excessive alcohol use or in some cases hormone therapy. Well, I couldn't rule out alcohol, however, did not drink in excess. Was not on any hormone replacement therapy so I was tested for hepc and the rest is history. Left untreated, PCT can cause cirrohosis and or liver cancer. Hepc can have the same effect so I highly recommend treatment for either disease. Good Luck
Trinity
i just went to the drs cause i was and have been feeling really crappy for a while now he did extent lab work and my ferritin came back 378 he wasnt very concerend but the more i read the more concerned i get about 11 years ago i was diagnosed with phyorphia cutena tarda i got it under control with blood drawing and to this day i never have anything more done but now reading i wondering if this elevate ferritin has anything to do with the hporyphia after all the reading i read dieting can raise the levels fibromalgia also testing with food on your stomach all these things i mentioned can raise the levels. at this time i dont know what to do he has me repeat the ferritin test in 2 months sould i call him back and let him know my concers about the phoryphia and dieting for the last 7 weeks before the test and not fasting and do the test over i just dont know listening to others 378 isnt that high
any advice welcomed linda
High feratin on tx is not a major deal, assuming you were ok at baseline re serum and liver iron loads. Basically it originates from the blasted red bloodcells - but I think saturated iron is a lot more complicated that that simple picture.
I had ferratin above 1K - my major wampum liver head was uninterested. Kept the pedal to the metal - got SVR, and iron returned to normal very quickly.
My ferriten level was 1800 at the same time my HGB was 8.4 and thyroid went wacky. I had to stop tx after just 5 weeks. I got a new doctor recently that is doing the blood work to check on that and since it has been 5 1/2 months since I quit, I'm hoping the ferritin level has dropped. I do feel crappy still! This level did not send off any alarms to any of the three doctors I was seeing before until I went to a new doctor with copies of lab work who immediately did the blood work. I will find out next month.
my ferritin levels are 1302 and im scared
HI NEW TO FORUM MY SISTER BROTHERS 3 ALL HAVE HIGH FERRITIN LEVELS HEMOCHROMOTIS APPARENTLY ARE IN OUR GENES BIG TIME ALL 3 BROTHERS GO FOR REG BLOOD DRAWS MY 25 YEAR OLD NEPHEW HAS CHIRROIS DUE TO HIS. WE HAVE JUST STARTED LEARNING ABOUT THIS AS A SIS DIED FROM HERS WITHOUT KNOWING THAT SHE HAD THIS.MOST DOC DONT WANT TO TAKE BLOOD TEST FOR THIS OR THINK TO UNLESS YOU DEMAND IT,AS IT IS AN EXPENSIVE TEST.IF WE ONLY HAD KNOW.
Hi Newbie, Just thought I'd say that my levels are a little high{like me} at about 700.I've been told that the levals can be in the thousands.My doc said if I have the hemochromatosis gene then he would consider Phlebotomy. If it was elavated due to liver damage, then he would just continue to monitor my liver. I think he said that a leval in our range might not signifigantly affect the outcome of tx.So get tested for hemochromatosis but I wouldn't let it bug you too much. Be Well!
Iron suplements are usually contraindicated on tx unless prescribed by your doc. Anemeia from tx is almost always hemolyitc not iron defecient. Excess iron is often stored in the livers of infected patients with negative consequences.
With all these dragons and ferretts running around in our blood maybe we should all be going to vets instead of hepatologists! Drugs might be cheaper that way.
Erin, thanks for your response but I'm still unclear about what to do. I didn't have high ferritin or hemochromatosis when I started tx but I started taking a few iron pills to help with the anemia. Looks like I took too many, but they seemed to help with my energy level. So, if the liver is in good shape, the virus gone, but the blood iron levels are high then there's no cause for action or alarm?
Thanks again to everyone for their helpful (or humorous) input.
People with chronic liver inflammation tend to have a higher level of ferritin in the blood. Ferritin is termed an "acute phase reactant"...this mean when anything in the body is inflammed, this will be elevated.
Now, remember having a high ferritin does NOT neccessarily mean you have too much iron deposited in the liver.
This is an important distinction because those with too much iron build up in the liver (hemochromatosis) may need to be treated with theraputic plebotomy (they basically give blood to get rid of the extra iron). This can usually be clarified by liver biopsy or even some of the newer genetic screening tests.
Having an elevated ferritin in the blood in the setting of a normal biopsy or normal gene studies, does not change what we do. These are some ongoing studies on this, but the jury is out...this was a hottly debated topic at last years big liver meeting in Boston.
We do reconmend that our patients with chronic liver disease do not take iron in a supplement form, even in a multivitamin. There is no need to change your dietary intake.
GI.PA
Erin
I never did like ferrets much. Doesn't surprise me that they would cause problems. I bet they're related to Badgers..........
Check out this website:
http://www.scripps.edu/pub/goodsell/pdb/pdb35/pdb35_1.html
It's a good starting point explaining ferritin.
the nurse practitioner who comes here Erin may know particulars on that one. my iron levels have always been on the high side but treatment knocked it down below normal. its now back up into the low norm. level 2 months post tx.
chelation therapy is not recommended or safe from what ive heard. check out www.quackwatch.com. it is a scam.
i try to avoid red meat, and avoid using cast iron frying pans as compromised livers dont process iron like that real well. i also do not tolerate iron supplements as they make me sick. could never even take prenatal supplements years ago. let us know what you find out about bloodletting, etc. you may come up with something by doing a search on high iron levels with hepatitis c or something like that. good luck