To be worried that this should have been picked up sooner?

[mumtiz3]

I've just had a call from my gp to say my recent blood tests showed my ferritin levels were 1702! (Normal range is 23-300)

I have been on iron tablets for years and have blood tests every three months because of medications I am on for Ankylosing Spondylitis which is a type of rheumatoid arthritis.

I have been told to stop the iron tablets immediately and to have another blood test in two months.

Surely this should have been regularly monitored? None of my previous test results show ferritin levels.

Should I be worried and is there anything else the gp should be doing?

Ferritin isn’t part of the full blood count so they may have not tested it before. I’ve only ever known low ferritin not high, hopefully it will reduce now you’ve stopped iron

Thanks for that, I'm just concerned it's so high and any potential damage it could have caused.

Why iron tablets for Ankylosing Spondylitis?

It's not for my ankylosing spondylitis, just always had really low iron levels ironically. Had to have iron infusions when I was pregnant with my youngest who's 15, and been on iron tablets ever since.

Not all otc supplements are good, especially when there is other pathology going on.

There was a 'Red Wine and Steak Diet' that was popular in the 70s/80s for treatment of Ankylosing Spondylitis.
Look up Ebringer ( father and son) rheumalotolists...
Not wrong necessarily, simply, of their time.

Sorry, realised, it's not all otc...
You've obviously had low iron to need infusions.
Forgive me.

No worries, but just to clarify the iron tablets have been prescribed and I'm on a lot of meds so need regular blood tests, just concerned this hasn't been checked before as I've been on them so long.

I'm always exhausted and have put it down to the ankylosing spondylitis, but now think it's because of this high ferritin level.

Have they checked your iron levels to see if you are actually iron pverloaded? That's important

Ferritin is also a marker of inflammation and is often raised with rheumatological disease, so it could be that rather than the iron.

Would the iron level be the hb? That's 119, which is low. It's always around this level even on three iron tablets a day.

My mum has had crazy ferritin levels in the past going from low to normal to super high and then back again. They tested her for lots of different underlying conditions but as far as I know, it was just considered one of those things.

No Hb is your haemopbin level. They should check iron

I have a serum iron level of 21.3. Is that it?

That sounds like it could well be in the normal range - do you have a transferin saturation?

So perhaps the ferritin is an inflammatory marker rather than a sign of iron overload (and therefore potentially no need to wory about excessive iron complications!) - i would suggest talki g to your GP or rheumatology nurse for some proper advice

Ferritin is the protein that stores the serum ferritin. Transferrin is the transporter of the iron. My ferritin is high-ish due to inflammation due to an autoimmune condition which could account for yours plus the iron supplements but yours is really high. Perhaps get investigated for hemochromatosis? I hope you get it sorted op.

My partner has a condition called haemochromotosis, which is characterised my high iron levels. Left for decades, it can cause problems, but his is easily managed by regular blood donations which get his levels down to normal. Don't panic- likely it's v manageable, whatever it is.

Do you check your regular blood tests yourself?

I have a different type of autoimmune arthritis, have 12 weekly bloods and the results are always available to me in the patient portal (and anything high / low is automatically flagged)

I always check my results, but this is the first time my ferritin has been checked so don't know how long this has been going on. I saw my rheumatologist last week and she said my inflammation markers are normal so it's not caused by that, but I'm not sure she's correct. She also told me I could stop my sulfasalazine if I wanted as she didn't know why I was on it! ( but that's another story lol). She wasn't very knowledgeable in my opinion.

Thank you, my rheumatologist was useless but I have another blood test in May and I'll ask my gp where I need to go next if my results are still high. Its just not knowing how long its been this high that's the concern.

Why are you on sulfasalazine if you don't mind me asking? I know 2 people on it who have autoimmune conditions. Your rheumatologist sounds about as good as mine if she doesn't know why you are on it! Did she run extensive autoimmune panels eg around 5 vials of blood taken?

I'm on sulfasalazine as I have a type of rheumatoid arthritis which is an auto immune disease. My gp said I should look to change it for a more modern drug as I've been on it nearly 30 years. When I asked the rheumatologist about changing it, she just said I could come off it!! Fine if I want to be immobile again, otherwise not so much. I gave up with her at that point and will see if I can be referred to another hospital.

@mumtiz3 Oh I see, thanks for sharing, sorry to hear that as it's a very painful condition. I know a handful of people on various drugs for RA. Methotrexate seems to be the main one & again an old drug, hydroxychloroquine and one friend on a biologic. I think they'll try the cheapest to see if effective first (of course). I was told by haematology that my ferritin is raised due to having Sjogrens but it seems to hover between 289 and the first ever flare was the highest at 489. The ana titer can indicate disease activity. Id say your ferritin could well be raised due to RA but additionally there may be something else going on. I've just remembered my friend is on methotrexate, sulfasalazine and hydroxychloroquine so I'm assuming its ok to be on a cocktail and perhaps you could ask your rheumatologist about staying on the sulfasalazine and taking the other proposed drug and tapering off the sulfasalazine and seeing how it impacts you? Good luck op.

I wouldn't give up on your rheumatologist just yet. I'm not clear from above If your diagnosis is ankylosing spondylitis or rheumatoid arthritis - but the exact diagnosis does make a difference for treatment.

If you have ankylosing spondylitis, then conventional DMARDs such as sulfasalazine are no longer recommended by NICE as not likely to be effective, don't worry, they won't do any harm. However if you have rheumatoid arthritis then sulfasalazine is a recommended treatment.

So in my interpretation if your diagnosis is purely ankylosing spondylitis then your rheumatologist is correct. She obviously didn't discuss it with you clearly though.

I'm sorry I can't help with the ferritin question though.

Thanks for this. To be honest I was originally diagnosed with ankylosing spondylitis, but as I see a different consultant every time, some say its rheumatoid arthritis.
I believe it's the former as its only my spine, neck and hips that seem to be affected.
I don't know what meds are recommended now but no one except my gp has ever suggested changing to something more modern. When I said to the consultant last week I was having flare ups more regularly, she asked what I meant by a flare up.