Iron Infusion Query

[Labradorfan]

Hello again PAS

Got great advice a year ago for suspected PA (& joined PAS) & am back with another query.

No results to post (as staying with family while incapacitated) but was refused a B12 injection therapeutic trial by GP (neuro symptoms, anaemia (ferritin), negative IFAB & B12 in 500’s).

I couldn’t keep up with costs of functional doctor who I was seeing, who I planned to get injections from. I’m not confident/ready to self inject.

So was going to try lozenges & see if my B12 improved & gauge how much to supplement from this. Which is where I’m up to on that. (I mistakenly thought I’d get my iron up first & gauge that effect, then my Vit D (deficient) then B12 etc but didn’t realise how long it takes for iron to increase etc hence why a year on I have yet to trial any increases to my B12).

It seemed logical at the time! Which in itself shows why I clearly need it!

My query is re iron infusions & what experience people have had (if any) of being able to get one. (Have also posted to Thyroid U.K too & had good advice esp re vitamins, improving iron myself etc).

My ferritin was low at 13 last year (no ranges sorry!) & after supplementing for 6 months as advised by GP, in a matter of months it is back down to deficient at 19.

I have periodic limb movement disorder in my sleep & RLS. The neurologist requested my GP get my levels up to 150 ng/mL for PLMD but GP disputed the need for this. Stupidly I believed GP when she advised that a level of 50 equates to neurologist’s level of 150??

Given the protracted amount of time it will take for my iron to increase to the level needed & degree of additional fatigue it’s causing me, on top of ME/CFS & depression & it’s impact on my sleep (chronic disturbance) I asked for an iron infusion.

Obvs this delivery method wld bypass any absorption issues & give my PLMD a chance of being treated & thus maybe better sleep, better mental health etc. I am incapacitated from work (part time) as a result at present and living with elderly parent to cope. So the need is quite high.

GP refused saying they are no longer given due to risks of adverse reactions. I asked for a 2nd opinion but told the same thing. They said they could refer to haematology but an 8 month wait.

Has anyone else encountered this response?

Should I accept the referral despite length of time? If unable to cope that long & have to go private, would I need to see a gastroenterologist or a haematologist?

Obvs Covid plays a part but neither doctor said that is why they can’t offer at this time - seems to be their policy on them. Or am I being fobbed off??

With thanks

[Sleepybunny]

Hi,

Hope things go well for you and that you benefit from an iron infusion if GP agrees to it in future.

Re PLMD....

I had periodic limb movements which improved when I cut out caffeine and reduced alcohol and started an iron supplement but the biggest improvement came when I started B12.

For me one of the signs of needing to take more B12 is a return of PLM in legs, arms and neck.

Did you try writing a letter to GP about B12 issues?

Have a look at next link which has lots of suggestions on what to say and letter templates.

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 5 is about being symptomatic for B12 deficiency with an in range B12 result.

Point 1 is about under treatment of B12 deficiency with neurological symptoms present.

"GP refused saying they are no longer given due to risks of adverse reactions"

Try searching online for "nhs intravenous iron (name of your CCG/Health Board)" which hopefully will locate the local NHS guidelines/policy on administering intravenous iron.

Other routes to locate local policy

1) Submit an FOI (Freedom of Information) request to local NHS website asking for details of the policy.

2) Ask MP to help you track down the policy if other efforts fail

I'm guessing (I'm not medically trained) that there may be a risk of iron overload with intravenous iron.

Iron Studies

labtestsonline.org.uk/tests...

Link about Iron Deficiency (aimed at health professionals)

patient.info/doctor/iron-de...

NICE CKS link about Iron Deficiency Anaemia

cks.nice.org.uk/topics/anae...

BNF link about treatment of Iron Deficiency Anaemia

bnf.nice.org.uk/treatment-s...

[Labradorfan in reply to Sleepybunny]

Hello

Thanks for your reply.

That’s v interesting re your PLMD & B12.

Yes I presented the case to my GP with materials from PAS for health professionals etc & lucky enough to speak to Martyn Hooper who advised me how to pitch it to the GP.

I didn’t write a letter but I asked for the info & checklist of my symptoms (for thyroid too) etc. be scanned in onto my records where the neurological risks & consequences of failing to treat were stated clearly.

GP would only refer me to haematology for IFAB test & said if negative then no chance of injections.

I tried to explain that wouldn’t be reliable showed her the literature etc but wouldn’t budge.

They are one of the many practices who in lockdown moved everyone onto b12 tablets with a view to keeping them that way (my elderly mum is one of them). Thanks to what I’ve learned from here I fought to get them to keep her on her injections. So a win for her. I’ve given PAS their details as I know they try to educate /send info to practices too.

Good idea re checking local health policy.

I’ve read a bit more on the subject & it seems the biggest risk of iron infusion is anaphylactic shock but this is v low. There is a newer, more easily tolerated less risky form that is widely used in Australia apparently & administered v quickly (in half hour) slots in gp surgeries. But the older solution (which is maybe still used here IDK) requires a health professional to be on hand after administration & can result in monitoring up to several hours - so not cost effective when all it’s doing is fixing a bit of fatigue for some woman because she happens to have periods! What one GP said to me! Also lots of claims made due to the staining on the skin apparently that can happen from the infusion at the entry point (if not done properly - apparently this is not difficult) so all in all a costly service that they say is not advisable on the grounds that apparently the body copes better having gradual increases (via tablets) than having it in one hit.

So I’ve answered my own question!(only from what have gathered from online so how reliable it is for practice here I’m not sure).

Encouraging that your PLMD improved with B12.

Thanks again

[Sleepybunny in reply to Labradorfan]

Hi,

Link about RLS (aimed at doctors)

patient.info/doctor/restles...

RLS (Restless Legs Syndrome) and PLMD often go together.

There are forums on HU for those with RLS which may be worth looking at eg

European Alliance for Restless Legs Syndrome (EARLS) and RLS-UK forum

Still think it might be worth putting your concerns about B12 into a brief, polite letter to GP.

Can be useful to have a paper trail in case there is a need for a formal complaint in the future.

If at some point in future you write a letter to GP, you could think about including

1) Relevant family history eg any relatives with PA etc

2) Quotes from UK B12 guidelines and other useful research articles

3) Symptoms especially neurological symptoms including any suggestive of peripheral neuropathy and spinal symptoms

My understanding is that RLS and PLMD are neurological symptoms.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines a process for diagnosing PA and Antibody Negative PA in UK.

Good luck and hope you find something that helps.

[Romany8]

Hi, I cannot recommend iron infusions enough.Many people underestimate the horrible symptoms that come with having low iron alongside B12 deficiency, I had my B12 top up injection 4 weeks ago, I was blaming the PA for majority of my symptoms that had crept back , however I felt shocking still and knew it must be my iron infusion due, fast forward and yes after asking ( the nurses had forgotten to check) bloodworks my iron and haemaglobin and very low again, iron infusion is now Wednesday.. however I cannot stress how much better within days I will be, I was originally fobbed off with tablets but I honestly think infusion is a much better way and is worth thinking about, take care x

[Showgem in reply to Romany8]

In the U.K. most doctors will only arrange for you to have an iron infusion if your haemoglobin level is below 11. I had an infusion a couple of years ago and it brought my levels right up and I had no side effects. I have had courses of iron injections in the past but they are not usually given now, I take Solgar gentle iron to keep my levels up.

My restless leg problem has gone after having it for years, I was severely low in b12 and deficient in vit D and had no ferritin stores so I don’t know if it was just the low b12 (58 when tested) that was causing it.

[Labradorfan in reply to Romany8]

Hi there

Thanks for your reply - that’s really encouraging to hear how much benefit you get from it. It is really fatiguing & arms & legs feel like lead.

As the nhs route is now ruled out I’m going to have to try privately.

Fingers x’d!

[Labradorfan]

Hi thanks for your reply.

That’s useful to know-am assuming mine’s not below 11 then.

Will do a private blood test and see.

Sounds like the combination of b12, Vit D & ferritin helped your RLS as you say which is really good.

I’ve been Googling private infusions so am going to query this route & see what comes of it.

Thanks

[Labradorfan]

Hi

Had completely forgotten RLS has a forum!!

I get what you mean re a paper trail for the GP - I thought you meant writing to try to get them to re-consider which I think is not going to happen. Yes definitely worth clear evidence of their neglect being recorded in my notes.

Thanks again

[K102 in reply to Labradorfan]

Hi Laradorfan

You definitely need an iron infusion rgardless of your haemoglobin (get copies of your results, I always do). My ferritin was 18 for 10 years with normal Haemoglobin, even though I supplemented with huge doses. I have ME/CFS etc. Eventually I persuaded them to send me to a haemotologist. I was very nervous, I had full dose iron infusion and I did feel better - after a while my energy went up a bit but I did have kidney/bladder issue (not sure if the iron fed a latent virus/bacteris). Since then I just have half doses and I also take lactoferrin (holo) (there are 2 types of lactoferrin holo has iron and apo has had the iron taken out). lactoferrin stops iron being used by viruses and bacteria. I was fine last time. I wish you the best of luck!

[Labradorfan in reply to K102]

Hi K102

Thanks for your reply. Wow that’s really helpful to know thankyou!!

I’ve never come across this on any of the forums but sounds great. Have had a quick google about it. How did you hear about it out of curiosity? From haematology or naturopath?

Well the gp has grudgingly accepted (after 3 requests) to refer me to haematology but am fearful they’ll just say no your haemoglobin’s fine so we wont offer you one. Worth a try. In the meantime have got an appointment privately for an infusion - which is taking longer obvs due to covid.

Are you taking lactoferrin holo with an iron supplement or are you relying on just that and your 6 monthly infusions?

Plus it would be worth sharing this on the RLS forum because lots of low ferritin sufferers there too & no body’s volunteered this as an option ( you may have already!)

Anyway thanks again - am so focussed on getting this infusion but aware it might not make a dramatic difference to fatigue levels (due to cfs) but hoping it will at same time!! At least my body will have what it needs to function if nothing else.

Thanks again!