Background is that for B12 to work its magic there must be sufficient iron in the body - even being slightly low in iron circa 18% deficient for example, can apparently hinder the healing effects of B12.
Now, needless to say that for most GPs this is complete rocket science and mind blowing and therefore trying to get them to act is like trying to juggle soot!
Has anyone ever been in a situation where they needed an iron infusion to support the administration of B12 for B12D? If so what was the pathway and how did the NHS make it happen?
Any advice for the Yorkshire/Manchester regions would be particularly insightful.
Thanking all you lovely people in advance!
🤗🤗🤗🤗🤗
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Wwwdot
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You might try the thyroiduk group if you don't get any answers here. They're bigger & more active. Hypothyroidism & low iron go hand in hand so i'm sure you'll get good suggestions there too. healthunlocked.com/thyroiduk
I’ve had an iron infusion as part of my treatment- it’s VERY difficult to get one on the NHS if you aren’t “anaemic” (eg. low haemoglobin). Went privately to Cambridge (to get the b12 started as well and for his experience in LC treatment), but there are iron clinics in Manchester (spire) or London (Harley st) too. Also some aesthetic type places now offer but it’s not medically monitored in the same way so I personally would be cautious of them. I’m 5 months in now and doing a lot better than I was (was bedbound) .
This has been the case exactly. The problem with Cambridge/London is the distance, being very ill and not getting urgent treatment that way - Demand is high and there is a lengthy wait. Has anyone used a private haematologist? Could they make urgent referrals for NHS treatment?
I explored the use of a private haematologist locally - it was £250 to see them for a consultation only (no treatment).
The waits in Cambridge were only a few weeks when I went in February (may be longer now) and the other clinics weren’t long waits then either (I explored them all -including begging my NHS colleagues to help). It was a real struggle to get to Cambridge (I am also based in the north) but worth the journey and the wait (I was counting the hours). I had an early appointment and stayed in a hotel nearby in an accessible room as, at the time, I needed a wheelchair.
My GP practice has refused to accept/act on the advice of the private consultant so I would be very surprised if an NHS hospital would give an iron infusion on the advice of a private haematologist.
Glad you could get to Cambridge. I had an online consultation with Dr K but I've easy no way of getting there as I'm housebound now and have nobody who can take me. I also need accessible transport/a wheelchair for hospital visits. Unfortunately the waiting time for infusions is lengthy at all of the iron clinics, bar London, I've been in contact with every one. I'm booked into Spire Manchester in August but really need that treatment sooner as I'm really suffering with debilitating symptoms.
Does anyone know of any NICE guidelines that states in what circumstances an iron infusion can be given if a patient isn't anaemic but has low iron levels? Sleepybunny? - no idea how to tag other members...
You can tag people by typing @ and then their username e.g. @Mixteca and then you have to cick the drop-down box that appears in order to activate it, it will then turn blue : Mixteca
Sleepybunny do you know anything about NICE guidelines for iron infusion?
I searched online for "NHS iron infusion" which showed many links".
Might be worth searching for "NHS iron infusion Yorkshire" or "NHS iron infusion Manchester".
You could submit a FOI (Freedom of Information) request to your ICB asking which guidelines on iron infusions are used in ICB area and for a link to or copy of them.
I think the hospital has only given you part of the treatment pathway as it says 1st line next to Oral Iron Replacement.
There should be a second line treatment and possibly a third line treatment etc.
Maybe you could send a FOI (Freedom of Information) request to the hospital asking for a link to or copy of their complete Iron Deficiency Anaemia Pathway.
Maybe send an FOI to your IBC (Integrated Care Board) in England or Health Board in Wales/Scotland asking for a link to or copy of their iron deficiency treatment pathway.
Sometimes a hospital's guidelines will differ from the ICB/Health Boards guidelines.
I have no idea, that's all I was given. I might do that at some point but I actually wrote to the haematologist responsible and got a not very satisfactory reply. I can't deal with them right now because I've booked a private infusion.
Wwwdot Mixteca On the thyroiduk group, they're all raving about a brand called 'Three Arrows', it is heme iron and several people have had great success in raising iron levels where other supplements have failed.
It's a weird website apparently and comes from the US, but they say it's amazing. For example healthunlocked.com/thyroidu...
Thanks Jade, another PAS member has mentioned that to me. I really need an iron infusion to get my levels up fast though, supplements are very very slow and I SI EOD
Thank you! Me too unfortunately. I've played the waiting game with my surgery for months, meanwhile I've just gone progressively downhill.
Because my haemoglobin is a good level (after being on B12 injections), they wouldn't give me an infusion on the NHS, despite being very ill and disabled by symptoms.
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Private vs NHS?
Update after private haematologist
Newly diagnosed - should there be referral to haematologist?
Anyone else having to battle each time they need an iron infusion?
