Anyone Had High Ferritin Levels?

[Chancery]

Just had a very depressing doctor's visit where I was told I couldn't be referred to a myositis specialist and would just have to wait to see an ordinary rheumatologist. My doc cancelled the appointment I'd scheduled to discuss my symptoms because there was "nothing else she could do for me". Very annoying because I've never actually talked about my symptoms to a doc and I am just left high and dry again, waiting for a referral that is currently taking 6 months, while I've been chucked off PIP and put onto Universal Credit despite not feeling able to work at all (too tired and sore).

However, on the upside, I got blood test results (that I had to re-request because they forgot to do them!) and discovered my Ferritin has jumped again, quite substantially. It's been high for over a year and seems to have just got a whole lot higher. My iron is otherwise good so it is unlikely to be Hemochromatosis, so it is almost certainly due to inflammation from whatever this problem is I have.

I asked my doc if it might be related to my suspected Dermatomyositis but she said she didn't think so, but I'm not sure why not? If it is an inflammation marker and myositis inflames muscles, causing pain, which I have a-plenty, why mightn't high ferritin be reflecting that?

Anyway, being heartily depressed now, my question is has anyone here ever had high ferritin as an inflammation marker or had a consultant say that it is or might be one? Any info or insights most gratefully received, because God knows, they're not coming from the NHS....

[Maggie7171]

Hi Chancery,

Ferritin has to do with iron overload. obesity, alcohol abuse, liver disease and more. There are many types of inflammation that have nothing to do with any of the myositis where the CK levels are a marker.

There is a condition called

hemochromatosis. Look that up. Also could be RA

(Rheumatoid arthritis)

I am perplexed that all of you in the BK ( I live in southern California) have to wait months to see a specialist.

Go to your regular Dr. to run test on both of these chronic dieases.

You definitely don't have a myositis unless you have high CK enzymes.

Do you drink high amounts of alcohol, are you a diabetic, overweight anemic?. These could raise your ferritin levels.

Not right you have to suffer.

Keep in touch.

Maggie71 71

[Catpuss66 in reply to Maggie7171]

Maggie in reply to your comment” You definitely don't have a myositis unless you have high CK enzymes.

I had a consultant who said the same thing , I posted this to the DM community on Facebook , there were lots of comments from people who were struggling with walking who were diagnosed with DM none ever had raised Kinase.

Might be worth looking at thread

Many of us are not diagnosed but have milder overlap just because it does not show up in a blood test, does not mean we are not struggling

[Maggie7171 in reply to Catpuss66]

Hi Catpuss66,

Sorry you are struggling.

[Chancery in reply to Maggie7171]

Thanks, Maggie, but like Catpuss above, I've read that CK isn't always elevated in myositis; many sufferers apparently get normal results. My high ferritin is definitely not Hemochromatosis as my other iron figures are fine, so it is definitely an inflammation marker of some kind. Not diabetic, not a drinker, but I am overweight. Not hugely, and I've been at the same weight for over two and a half years so I'd think it would be a bit odd for it to be not only raised for over a year, but for it to have jumped up quite a bit more when I haven't gained any more weight (in fact, I've lost a little). So unless I'm prediabetic and just don't know it!

If the blood tests my doc has done don't show anything that helps I might ask if I can be checked for diabetes, just in case.

[Maggie7171 in reply to Chancery]

Hi Chancery,

Yes there are some (probably very small percentage) that don't have high CK's but I doubt they have high Ferritin.

Did you get an MRI and a muscle biopsy? That's protocol here.

[Chancery in reply to Maggie7171]

Oh, nowhere near that stage, Maggie - I've yet to get an appointment to see a rheumatologist, let alone actually see someone who might know something. I'm on the waiting list for the waiting list!

[Maggie7171 in reply to Chancery]

Darn... Not right.