Hi Ferritin and Hi Iron levels: Does it compromise health or treatment?

[eureka254]

Hoping for help with some lab number concerns.  My husband's recent iron studies showed very high saturation levels of iron (87%), high ferritin (1030) and high iron (306), and I'm wondering if any of you could give some feed back as to whether those numbers are dangerous.  I've heard some people talk about phlebotomy as the treatment to resolve high iron, but I understand that high ferritin and iron can be a direct result of anemia (which he has).  Is it normal for that to happen as a sx during treatment, does it need to be addressed, and should they return to normal if anemia is corrected?  

[GSDgirl]

Porphyria is what led to my diagnosis of hep c.  I feel for your friend, the phlebotomies were bad enough pre TX & I can't imagine doing that while on TX.  

eureka, sorry I can't chime in with anything useful

Denise

[oneatenuff]

Hi eureka -  I had to get selfish on the guac when I saw only a few TBSP left : - )  but when I  make a fresh batch I'll pass some to you!  Friend says .... since your husband is anemic now - they probably will not do any phlebotomies  (but he's not sure.)   They had to do them with him  (friend)  because his iron overload caused the porphyria which had to be treated.   Excess "porphyrins"  (whatever that is)  develops with iron overload, stores in the liver, and then it travels through the blood to settle somewhere - either the skin, another organ, etc.)  He said that little is known as to why there is the connection between the hep c and iron overload resulting in the increased porphyrins  (the exact mechanism of what exactly is going on - or he couldn't understand it fully when it was explained to him)    but he said that the iron overload could eventually manifest itself in your husband like it did with him  (he found out because he suddenly developed porphyria cutanea tarda).    The sunlight exposure to his hands was what caused his to erupt on his hands (blister formation - can progress very rapidly - can get secondarily infected - can be a very unpleasant and dangerous due to infection).    There is also a connection between the porphyria and liver cancer  (and so he was really pretty scared at the time when diagnosed with the porphyria, but his AFP was fine, US was fine, etc.)    His ALT and AST also spiked for the first time while he was on treatment (they went into the 100's just as the iron overload came on.)    I was mistaken before - he was not anemic when his iron overload came on and when he was on treatment.     Porphyria cutanea tarda is so commonly connected now with hep c  (and rare otherwise)  that almost anyone who presents with a case of it and doesn't know whether they have hep C or not will be tested for hep C.   In his case, he had treated with SOC a few years ago, the 42 weeks, relapsed, and then treated again with 72 weeks, developed the excess iron on second treatment  (also had a bronze color to his skin due to the iron) in about that 5th month of 72 weeks.   They were doing regular phlebotomies with good success, they started him on Provigil so he could keep going  (he was wiped after the phlebotomies)  he was able to continue 72 weeks treatment, and then - at 6 mo PCR  he was 300 copies   (just barely over detectable).   He was offered Infergen but he thinks he's is going to wait for VX-950.     He has always responded rapidly when treating, and he does pretty good on treatment  (can continue to function, work, job, etc.)  and so he has decided that instead of daily injections with the Infergen - to just wait.    

Hope that helped some.   Hope your husband is feeling OK.  Wishing him the best!  

[eureka254]

FloridaMouse:  He is currently on Procrit, but those were his numbers BEFORE he started the procrit, and yes, he does have advanced liver disease (stage 4).  It’s reassuring, then, to hear that both you and your friend’s levels are considered ok :), and yes, he’s doing his best to stay away from high-iron foods. (For a meat and potatoes guy, it’s been a big overhaul!)

Portann:  I appreciate the links!  It’s a knee-jerk reaction to think the worst when normal ranges are supposed to be double digits and I’m reading hundreds and thousands.  Many thanks …now I can roll my eyes like your nurse :).

jt57:   Thanks for weighing in… seems like it’s a lot more common on treatment than I thought!

oneatenuff:  If he comes, great, but tell him to bring some guacamole too! :)

~eureka

[oneatenuff]

I don't know if those numbers are dangerous, but iron overload can cause more problems in the liver.  I've got a friend who was getting phlebotomies while on treatment because he developed iron overload on treatment  (he had about 5 months to go of 72 weeks.)  I think he was getting phlebs about once every two weeks after they discovered his iron overload, but in his case they discovered the iron overload because he developed a skin condition called porphyria cutanea tarda, which is associated with hep C and with iron overload.   His problems with the high iron came on rather suddenly, or maybe not "suddenly"  but the porphyria development during treatment was kind of a shocker (for him at least)  and as well I think his docs were kind of surprised since his ferritin level had been no concern (normal) and then suddenly while on treatment - he's now got iron overload AND the porphyria. Good news is he did well with the phlebotomies  (they worked to reduce the iron and to ease the porphyria) and he was able to continue on with treatment.  They still monitor to see if he needs another phlebotomy to reduce the iron  (since he's finished with treatment)   but so far he hasnt' needed one  (and they don't expect he will.)   He said they were pretty sure he wouldn't have anymore problems with iron overload once his treatment was finished.   I'll ask him if he remembers what his numbers were or if he's able to contribute anything he thinks might help you.  He is being treated by a great hepatologist in PA, and they had a lot of discussions about iron and phlebotomies these past few months, and he learned a lot - was able to spit out information on ferritin levels and iron levels and saturation this and that and phlebotomies and what too much iron in the liver can do and what problems it can pose, etc. - like a pro before it was over with.   So if he knows something his doc told him that he might be able to pass to you that might help you, I'm sure he'll be glad to.   He ate too much guacamole tonight though and the last I saw he was passed out in the recliner with the dog, and since "let a sleeping dog lie" is another one of man's best friend, I'll ask him tomorrow.  :-)

[portann]

http://www.medhelp.org/posts/Hepatitis-C/Hepatitis-Researcher/show/553730

http://www.medhelp.org/posts/Hepatitis-C/Very-HIgh-Ferritin---Iron-levels-possibly-unsafe/show/90697

http://www.medhelp.org/posts/Hepatitis-C/Effects-of-high-ferritin-levels/show/87100

[jt57]

mine runs around 2000, ferritin that is, and my iron was 236 last test.  Dr seems to think it will correct itself after I stop tx.  I have anemia and I take procrit.  I would not be too worried until tx ends.

[portann]

Can only speak to  my experience with high ferritin, which was measured during tx at 1124. I will try to dig up the thread and post it. It was very informative.

I do not have advanced liver disease and had high ferritin, which was measured routinely by my family doctor at a check-up. She panicked and the hepatologist told her it was of absolutely no significance in my case, that it would resolve itself after tx. My NP rolled her eyes at the fuss over nothing.

As I said, though, my liver damage is not advanced.

[FloridaMouse]

Is your husband on Procrit, Aranesp or another drug for anemia?  This will also increase iron levels.  Does your husband have advanced liver disease?  Hi Ferritin and iron is typical in more advanced cases.

My Ferritin is currently 1700 and I have a good friend who runs 2800, they have not recommended phlebotomy for either one of us.

Mouse
P.S.  Make sure you husband minimized his  iron intake as much as possible.