How reliably does NHS retest Blood iron levels after IV Iron?

[Barnclown]

my new NHS gastroenterologist ordered my iron infusion when my GP alerted her to what they are calling complex iron deficiency blood test results, some longstanding. I was given Ferinject on April 11th. The infusion appointment letter says:

the physician who is looking after you may follow up with a blood test between; 2 to 4 weeks’ time after the infusion to check & see if further Ferinject infusion is required.

That “may follow up with a blood test” has me feeling wary

I’m with a lot of NHS hospital depts long term for various immune dysfunction & connective tissue disorders & have loads of periodic blood tests. usually my consultants set dates for blood monitoring in writing to me & my GP promptly. But this time I’ve heard nothing from my gastroenterologist & my GP says she has no plans to retest my iron levels. I recently transferred my Gastroenterology care to a different hospital - one which actually knows me well because it’s handled several emergency surgical gastroenterology admissions in recent years & is now investigating yet another issue on a cancer fastrack pathway …so the surgical leads know me, but this gastroenterologist is new to me

am thinking I’ll maybe do best to phone my gastroenterologist’s secretary once 2 weeks have passed since the iron infusion & ask her to check when my blood is due to be retested - especially as I have a tele appt with my gastroenterologist on May 22 and would like to discuss my retested iron levels with her then

Will be very grateful for your thoughts on this

[SueJohnson]

I don't know about iron levels generally but I do know if you test for ferritin sooner than 8 weeks it will read much higher than what it really is or perhaps what it settles at. One person tested at 1,055 originally but at 141 after 8 weeks. And of course for your RLS symptoms ferritin is what is important, but you have so much more going on.

[Barnclown in reply to SueJohnson]

Thanks Sue: that’s very helpful.

[ChrisColumbus]

Standard procedure varies by Trust. E.g. Oxford University Hospitals NHS Trust simply say that they will perform a blood test 4-6 weeks after the IV treatment. If ferritin is still low at that point they may recommend a further IV treatment,

Gloucestershire say "You *may* need to have a blood test after 2 to 4 weeks (1 month if you are a renal patient) to check your iron levels. This will be decided by your consultant." (My emphasis on the 'may')

Of the two approaches, personally if I was to have an infusion I would prefer the definiteness of the OUH Trust and the fact that they've allowed more time before checking.

[Barnclown in reply to ChrisColumbus]

There it is! That’s the NHS for you. Thanks Chris!

[Baz33]

Mine are taken every 4 months post iron infusion, my ferritin rose to 179 and then was back down to 101 after 4 months, now waiting on my 3rd and have my appointment with neurology next month .

[Barnclown in reply to Baz33]

Many thanks Baz! Apologies for delayed reply: had a rough 10 days - not an excuse, just to explain. Your reply is very helpful: exactly what I need. Hope things are going as well as poss for you

Just wish I could be re-referred to neurology so my neuropathies + the RLS could be considered together because of course they must overlap….seems to me neurology is as relevant to monitoring etc the effects of this iron infusion as gastroenterology is (re the long term oesophageal bleeding the NHS thinks is main cause underlying my anemia). But neurology discharged me during the pandemic after neurophysiology investigations confirmed small fibre & peripheral neuropathy - both of which have become a lot worse since. It’s no picnic, is it?, understatement of the year

Good luck with neurology! 💞