Is ferritin at 558 something to worry about?

[SleepyBhamster]

Got tested on Tuesday because I thought it was time for another round of Injectafer infusions--but my rheumatologist's office just called to tell me my ferritin is at 558. Is that crazy high? Should I be worried? I'm frustrated that I can't access the entire report--they are mailing it to me. If I had all the numbers, I would try to email Dr. Buchfuhrer to ask him. Don't have anyone in Birmingham who can tell me. I cancelled appointments with Dr. Rye in Atlanta and Dr. Walters in Nashville, but now I'm wishing I hadn't. But a month ago I thought I was doing well. Now I'm not sleeping well because of soreness in my thighs (posted about earlier today) and the beginnings of twitching in my lower legs. I am also COLD almost all the time--except in the middle of the night when I get too hot. Could be unrelated but it's making me miserable.

BTW, was I supposed to have fasted before my iron test? I didn't even think about it and had a bowl of cereal a few hours beforehand.

They made an appt for me to see my rheumatologist May 17, but if what's wrong with me is RLS related, he won't know what to do. He ordered infusions for me at Dr. Buchfuhrer's direction. Oh--I should have mentioned: my ferritin back in the Fall of 2020 was 30. I haven't had it done since then.

Thanks. Trying not to panic.

EDIT: Yay--they emailed me the results. I will write to Dr. B.

[Rustsmith]

Ferritin at 558 is not something to be worried about, especially after an iron IV. If it were that high naturally, then you might be a candidate for a hemachromatosis genetic test. My ferritin level ran over 600 for several years. I asked about it and was jokingly told that as long as my skin color was due to a Colorado summer tan, then I had nothing to worry about.

As for the test, it is supposed to be done while fasting, but unless you were eating a cereal that is fortified with iron or you had a large steak the evening before, it wouldn't be responsible for your high ferritin number.

[SleepyBhamster]

Ah well, it was a raisin bran-type cereal that says "Good source of vitamins and minerals including IRON." The nutrition label says: Iron 4.5mg 25% RDA.

I probably ate it around 7:30am and had the blood test at 11am.

I was able to write to Dr. B but I left out the info about having eaten. Should I let him know? (I hate to write even one extra word to him as I know how busy he must be.) I WILL still need his opinion as I'm positive my rheumatologist would never ever order infusions with my ferritin level that high. So it's possible to still have RLS symptoms with it up that high? I had been expecting that the infusions would have me around 150 or so.

Appreciate your help greatly!

[stjohnh]

While it is true that the ferritin test is most accurate when done fasting, the difference is minor except in the case of a low ferritin (<20). The iron in the cereal will not change the ferritin test. You need a lot more iron to affect the test.

Remember that ferritin is not iron. It is a protien the body uses to store iron. In the best case, the ferritin reflects the amount of iron in the BLOOD. Ferritin levels in tissues can be much different. And yes, there are lots of people with high ferritin that have RLS. Remember also "high ferritin" does NOT mean you have high blood iron. High ferritin is usually due to some type of inflammation, perhaps from your sore thighs? Also, why is it that you see a rheumtologist? Many rheumatologic diseases have a high ferritin.

Actually, more puzzling is the change from 30 to 558. Ask the rheumatologist about it.

[SleepyBhamster]

Thank you. That's good to know. Dr. Buchfuhrer did respond tonight, but not with anything helpful as before--just that I couldn't go wrong seeing either Dr. Rye or Dr. Walters. Guess I'd better try to get an appt. I'll be seeing the rheumatologist first (I see him for systemic lupus).

I seem now to have stomach flu: fever and stomach ache. I haven't have the flu in years and years--and I never ever have a fever as my natural body temp is quite low. Tuesday I went to two doctors' offices and had a realtor over; must have picked it up from one of them. Can't believe I've avoided COVID-19 but got the flu.

[stjohnh]

Many lupus patients have very high ferritin test (but normal actual iron levels in their blood).

[debbluebird]

I've had high ferritin and no Doctor was ever worried.

[SleepyBhamster]

Thanks, Holland and Deb. I think I might be having a lupus flare, although I'm not sure. But it doesn't seem to fit in any other category. I see my rheumatologist in a week about the high ferritin--his office requested it. I'm just afraid that he won't prescribe iron infusions with the ferritin level so high. But I'm trying to understand: does it not necessarily drop down to the original level (in my case 30)? Trying to get an idea of what would have been a normal rise and then drop.

I apologize if I'm not clear. I am definitely suffering lupus fog right now.

I have requested an appointment with Dr. Walters at Vanderbilt, but who knows how long that could take.

[peanut1]

I remember when my ferritin tested at 670 and my primary care doctor at the Veterans Administration practically flipped out and lectured me on how I was damaging my liver. So grateful that I have an EXCELLENT RLS doctor, Dr. Ondo who told me there was nothing to worry about. I do know that when my ferritin gets too high ie. over 600 it does aggravate the RLS

[SleepyBhamster]

When I told Dr. Walters yesterday that my ferritin was 558 but I got sick with a stomach virus 2 days later, he said we should completely ignore those results. I was quite relieved at that.