A couple of weeks ago I experienced severe debilitating pain in the lower abdomen and lower back. I had developed a stomach upset that including a couple of gastric symptoms 24hrs earlier. Because of the severe nature of the pain I made an urgent appointment to see a Dr at my local practice the same day.
I should mention a little background to my health status.
I have been PMR sufferer for 15 months now and I’m currently on 7.5mgs. It’s been a wild ride with the tapering and everything else that goes along with PMR but I’m presently holding my own and staying where I am with the dosage.
I was prescribed Lethfludemide last October to help with the tapering. Unfortunately I developed gastric upsets and decided I take myself of the medication. I been faring well and still managed to reduce the prednisone from 9mgs to 7.5mgs since February this year.
Getting back to the Iron Studies, the GP who I saw, urgently ordered a raft of investigative blood tests the same day. Iron studies being one of them . I had the iron studies done initially when I was first diagnosed with PMR . It returned a normal result.
My inflammatory markers CRP has always been low ( usually 1/3) it’s never been higher than 16.
Apart from the white count being slightly low everything else is normal. ( renal function, liver function etc.)
However, not the iron studies… The ferritin level being over 500.
This was reviewed and it was explained that elevated results can indicate a inflammatory bio marker. Causative factor being the stomach upset. The explanation appeared to make sense and I was told to repeat the blood test two weeks later. This I did, although still high ,the ferritin level had dropped. My GP commented on the result on line to say it was resolving. I was relieved and thought that was good news. I spoke to the rheumatology nurse who suggested that I should have another repeat in a couple of weeks time.
Yesterday I went for the repeat and the Ferritin has risen again to 458. Transferrin sitting at 66. It’s supposed to between 16-50.
I don’t believe it Haematchromatosis but who knows. I’m off to the surgery on Friday ( off my own bat) to find out exactly and ask more questions why is it sitting so high. Also what the plan is to getting it lowered.
I curious to know if anyone else in the community has had this abnormal result and of course any advice would be greatly appreciated.
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golfnutter
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Sorry, l don’t have any experience of High Ferritin Levels only the opposite with my Daughter-in-Law, which caused great concern because of her ethnicity, she is now fine 🙏🏼
Are you taking any supplements? Pro will be along later & may have some words of wisdom for you.
Good Luck at your Appointment tomorrow, please let us know how you get on.
I’m taking calcium and magnesium tablets. But I usually have them sporadically to support my dietary needs when I feel they are inadequate . I also take cholecalciferol once a month too.
I don't know how high it was but I too have had raised ferritin - it is the only acute phase reactant that has ever been raised for me in relation to my PMR, ESR and CRP just don't want to go up!
Actually, your ferritin isn't THAT high in the great scheme of things so don't worry too much. Is there any sign that your PMR inflammation isn't as well controlled as you think?
I have just checked my ferritin blood test results and notice the highest is 611, it is currently 338 which is the lowest it has been in the last three years. It is usually in the four or five hundreds. It does skip up and down quite a lot. No one has mentioned it to me from my surgery although it does say Abnormal. I would not have known if you had not mentioned it.
Just woken up as I live on the other side of the planet 😊. First of all, thank you guys for your responses. Interesting that I’m not alone pondering about why it’s so high and how to deal with it. My first result was 585. I must admit I was pretty blown away and found it unsettling hence why I’m off to the GP tomorrow morning to discuss options and treatment to get it under control.
My recent tapering regime from 8 to 7.5 has taken 3 weeks of alternating each day. This week spacing the 8mgs between the the 7.5mgs two days . I have been feeling some grumblings of PMR yesterday. So I guess it back to
8mgs for 5 days and see how I go.
Yes, it looks like my only indication presently that not all is well in regards to my PMR is the ferritin result. This disease is certainly not the same for all as we have all discovered. There is no set rules how it manifests in your body either.
I certainly don’t follow the norm it was my physical symptoms that told me something is wrong. All my previous blood results indicated I was healthy . Sadly not….
Grumblings have now have increased to sharpish discomfort in the left upper arm clavicle region. I know what’s happening and It’s not pleasant. Just taken 8mgs any suggestions please.
My hubby was diagnosed with Heamatomachrosis 2 yrs ago, his Ferretin reading was in the 400's. The treatment is to have blood taken every month to begin with until the level drops to a normal one. He has this done at a local hospital. He also has to avoid iron rich foods and foods with added iron.
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