Ferritin level is off the chart

[Arisgram]

Ok. Someone with more experience tell me just how bad a "ferritin" level of 1145 is? The normal range is like 15 or something. This is the first time I've had this test, and the onc didn't go over my labs. What the hell?

[MacroMom]

Gosh it’s aggravating to get labs without explanation. My ferritin was over 1,000 when I was first diagnosed. I was told it’s a sign of inflammation; I’m sure there are many things that could make it go up. It went way down when I started Letrozole. Hope your onc can give you more details.

[Arisgram in reply to MacroMom]

Thank you. Maybe the Xeloda will bring it down

[MyMiracle13]

Hi. Never had this ferritin included in my lab tests too? What is it for?

[Arisgram in reply to MyMiracle13]

It's to check iron stores. I guess I have waaaayyyy too much. They probably only check it if you have liver involvement.

Andi

[MyMiracle13 in reply to Arisgram]

Thanks!

[Hidden]

It means you have too much iron in your body. If you are taking a supplement with iron and vitamin c, you may want to tell your doctor as the may cause it. There's also lots of iron in fresh greens, so certainly worth discussing with your onc. Is there a nutritionist you can talk to?

I hope you'll get that number down.

Hugs, Anja

[Arisgram in reply to Hidden]

Thank you. I have progressing tumors in my liver, so I guess it's from the disease or the drugs. Hopefully it will come down if we can get the tumors to shrink.

Thank you for your help.

Andi

[Barbteeth]

High ferritin was how my mbc was suspected initially

The other cause is from haemochromatosis where iron is stored in the organs and is found in people of Irish descent...that’s me

Wish it had been that and not mbc but I tested negative for it...it’s controlled by regular blood donations

Barb xx

[Arisgram in reply to Barbteeth]

Does it come down? Did you have liver involvement initially?

How is your eyesight? So glad to hear from you.

Andi

[Barbteeth in reply to Arisgram]

I don’t actually know the answer to that as I don’t have it checked any more once the mbc was found to be the cause

Initially I didn’t have liver mets but have a few now

My eyesight is very dim in one eye where the tumour is and the ophthalmologist thinks there may be some damage to the optic nerve which is depressing...I’m sort of getting used to the double vision but I’m expecting the radiotherapy to help but not sure how long it takes for shrinkage if any to take...maybe it takes a while...everyone seems to be vague about this

I’ve made myself go for short walks and been swimming a few times and if I cover or shut the affected eye I can see ‘normalish’

What’s that saying?...’in the land of the blind...the one eyed man is king’

Barb xx

[Teddielottie in reply to Barbteeth]

Have missed you on here Barb ! ...hoping you soon get the treatment you need . Much love x

[Arisgram in reply to Barbteeth]

I hate that for you, Barb. I think I allow my expectations far outreach what is reality. I hoped they would blast you a few times, and you would be back to baseline.

Hopefully the faslodex will continue to work well and your eyesight will return in time.

Andi

[Barbteeth in reply to Arisgram]

Markers have gone up now but I’m assuming because of the eye lesion as scan looked good

Barb xx

[mariootsi]

I would have the onc explain. I have never heard of this test.

[Arisgram in reply to mariootsi]

I've read about it, but I can't find anything that says how it effects you and how quickly it will resolve.

Thank you for responding.

Andi

[mariootsi in reply to Arisgram]

Of course.

[Pbsoup]

Mine was also super high just before diagnosis. As were all my inflammation related markers. Now they are back to normal. Treatment plus supplements and diet seemed to do the trick. I would definitely ask my Onc about it. My understanding is it’s good to try and manage inflammation if possible.

For what it’s worth. I had several tick borne illnesses that contributed to the inflammation over several years. My new Onc said there may even be a connection between that and my cancer coming back. Lyme and it’s cousins have a lot to atone for.

[Arisgram in reply to Pbsoup]

That's very interesting about the tick bites. Insidious little creatures. Thank you for letting me know yours dropped. I wonder if ferritin is akin to a tumor marker? Maybe the level will drop if the progression is arrested. Thank you for your help. Be well! Andi