GP has stopped my NHS B12 injections ... - Pernicious Anaemi...

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GP has stopped my NHS B12 injections because I self-inject

Cherylclaire
CherylclaireForum Support
49 Replies

I have just received a letter informing me that it has been decided by the practice that, because I self-inject, my NHS B12 injections will be stopped, unless I discontinue.

This is because they believe that

- buying medication online can be dangerous

-self-administration can be dangerous

-taking B12 at this frequency (every other day) is not recommended

(I saw the GP who wrote this letter once recently - he is not my usual GP - however the decision was made at a meeting )

I have been self-injecting at this frequency for two years now and genuinely believe that gradually I have been able to manage my symptoms in a way that was not possible on any NHS regime that I had been given previously.

I thought that I was finally getting somewhere and have been entirely honest with this practice throughout what has been a long ordeal.

I have an appointment already booked, with my usual GP, for next week.

Quite what to do next escapes me right now. Any suggestions regarding how to approach this ?

I do not have a Pernicious Anaemia diagnosis.

49 Replies
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fbirder

I would write a nice, calm letter back addressing their points:

1. Lots of people in the UK buy their non-prescription medicines online without putting themselves in excess danger.

2. Hydroxocobalamin for injection is not a prescription medicine in Germany and, therefore, many Germans will buy it online without putting themselves in excess danger.

3. More than 300,000 people self administer injections more than once a day. And diabetics inject themselves with something much more dangerous than hydroxocobalamin.

4. There is no evidence that frequent injections of hydroxocobalamin have any risk of toxicity.

25 likes
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Cherylclaire
CherylclaireForum Support
in reply to fbirder

Good to hear from you fbirder -

this totally threw me, after all this time ! I saw the look of total panic on this doctor's face, and knew it wasn't good news. Guess this is what comes of seeing a new doctor when usual GP is on holiday !

Thanks for prompt response too.

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fbirder
fbirder
in reply to fbirder

Oh, and then there's point 5...

5. I'm already injecting myself. If you withdraw my NHS treatment then I'll just have to inject myself more often. If it is as dangerous as you say, surely your action will be harming a patient. You dimbos.

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clivealive
clivealiveForum Support
in reply to fbirder

:)

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Cherylclaire
CherylclaireForum Support
in reply to clivealive

Hey, clivealive - still around, then !

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clivealive
clivealiveForum Support
in reply to Cherylclaire

:) Cherylclaire yes I'm still "on here" most days but struggle to "keep up" with as much correspondence as my fingers can't keep up with my brain :)

I am sorry to read of your difficulties and hope you get a good and right result.

Take care now - I wish you well

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Cherylclaire
CherylclaireForum Support
in reply to clivealive

You too Clive

1 like
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DeeD123
DeeD123
in reply to fbirder

😂😂😂😂😂. Wonderful turn of phrase fbirder 😁

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Ebonner
Ebonner
in reply to fbirder

Sorry I’m new on here but my question is does nice guidelines state you cannot overdose on B12 that no matter how much your intake is of b12 doesn’t have an impact on anything else?

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fbirder
fbirder
in reply to Ebonner

No. The BCSH Guidelines say -

Maintenance treatment for patients presenting without neurological deficit is with hydroxocobalamin 1000 lg i.m. every 3 months. Those with initial neurological deficit should receive hydroxocobalamin 1000 lg i.m. every 2 months. No further testing for cobalamin levels is required. Although there is little evidence that more frequent dosing is harmful, specific objective studies demonstrating clinical benefit are absent, and the GWG cannot make specific recommendations.

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Nackapan

I would ask them to explain their concerns. Dosent seem to make sense. Or if they concerned to offer the frequency you need then you wouldn't need to self inject.

I had a different nurse last injection who questioned who sanctioned the 2 weekly regime and u needed a B12 blood test and if okay to go on 3 monthly. I felt panicked.

Fortunately the doctor had'sanctioned ' them. Like you say someone different.

Ask for the 'safe' injections to be prescribed so you can self inject them? ?

Sorry this has happened when you've been transparent with them.

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Cherylclaire
CherylclaireForum Support
in reply to Nackapan

It was when I went from loading doses (which did not seem to have any effect on me) to 3-monthly that I was at my real worst, Nackapan , so I understand why you panicked.

Later, when I was given 2 injections a week, some of the nurses really didn't like doing it at all. It took quite a while even then to get any improvement.

Isn't this all nightmare enough without having to go over and over the same ground ?

Are we the only ones who read the information, advice and research ?

There is no known toxicity level with B12.

There is only the nightmare of undertreatment, or the threat of it.

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natcap1

Sorry to hear this Cherylclaire. This is mentally and physically draining.

Sounds like you have some good tips, and certainly it is worth seeing your regular GP before you write. You may not need to write it and she may be able to smooth things over.

I am constantly surprised why this causes so much controversy in GP practices. I can only assume that if something goes awry they think they will be held responsible.

Hang in there.

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Cherylclaire
CherylclaireForum Support
in reply to natcap1

Hanging, natcap1 - thanks for the support !

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Cherylclaire
CherylclaireForum Support
in reply to natcap1

Did I imagine it natcap1 or did you send me a video of Dr Chandy ? Can't find it now.

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Sleepybunny

Hi,

If I had a letter like that part of my response would be that I only inject if neurological symptoms return before my next NHS jab is due and that other forms of b12 supplementation have little or no effect on my neuro symptoms.

I might then have a discussion with GP (followed up by a letter)on how far is it safe to allow myself to deteriorate without injecting myself as I wait for next NHS jab

1) till eyelid twitching starts?

2) till high pitched tinnitus starts?

3) till muscle twitching starts?

4) till periodic limb movements start?

5) till pain in my legs becomes unbearable?

6) till pins and needles start affecting my spine?

7) till mental health takes a nosedive?

"taking B12 at this frequency (every other day) is not recommended"

I might point out that every other day loading jabs are part of the BNF treatment regime for B12 deficiency with neuro symptoms and that there is no set time limit on how long these can continue for.

Actually I think fbirder 's idea of a calm written response is a good one.

I don't have a PA diagnosis either so I would not be surprised to get a similar letter at some point.

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LuluCops

@Sleepybunny

Hi, I have all those symptoms that you listed plus extreme fatigue (although I do have Hashimotos, Addisons and Fibro too) and a constant feeling of breathlessness (constant feeling of not being able to breath in, like I can’t get my breath into my lung past the bottom of my windpipe) and my GP (actually 2 of them!) refused to even start me on B12 injections, even though I loaded them up with a paper pile the size of a small bonsai tree, telling them why they should!!

The second one said she wasn’t comfortable doing so without getting a specialist opinion, the haematologist came back and said that because me levels were sufficient and I was negative for the IF then I didn’t need the injections!! But because my levels were only just over 300 then they could give me the tablets if this was what I ‘really wanted!’

I self inject now, my symptoms don’t seem to be going though, the only one that seem to have eased is the pins and needles in my spine- not so obvious now, more a dull tingly sensation every so often. xx

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Cherylclaire
CherylclaireForum Support
in reply to Sleepybunny

Thanks, Sleepybunny, you are absolutely right and a very good point about the "every other day" regime -

in fact I was getting 2 injections a week when MMA test result returned as "raised" and "serious B12 deficiency" was written on my doctor's certificate, back in 2016.

For these reasons, I feel that I should first discuss this with my usual GP before writing in response to the GP who sent the letter. After all, she alone saw me through the worst of this. She is highly likely to have asked for consultant's advice regarding this departure from their usual practice regime. Functional B12 deficiency, suspected by her, was confirmed by the lab. It is also possible that she was not at this practice meeting.

Perhaps by then, a calm written response will be more easily composed !

Honestly, if only they had been this bothered when I was actually struggling..... I would have welcomed such hysteria over my hair falling out, losing my memory, having to force myself to walk, daily diarrhoea, gums bleeding, aching joints and sleeping for 15 hours, because then I thought I was dying.

Not calm yet..... but not dying yet either !

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Sleepybunny

"then I thought I was dying"

I remember those days of feeling I was dying .... and I'm not going back to them. At least I have the resources to self treat if my NHS jabs are withdrawn.

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Cherylclaire
CherylclaireForum Support
in reply to Sleepybunny

Yes, too awful to forget easily. Not going back either, not now I've come this far.

I'd never heard of B12 deficiency before being told I was B12 deficient.

They made it sound so easy, matter-of-fact: just go to the nurse and book your 6 injections within the month, and on 6th injection, nurse starts telling you it's now your responsibility to remember to book an injection in 3 month's time, and you ask "how often ?" - and it's then you find out that this is forever. Well maybe that sounds normal to them ....

And no-one ever said anything about getting worse. They must know. They must've been told. This can't be new to them. Well, they can't be hearing this over and over again and choosing to ignore it, can they ?

They should've warned us.

I didn't choose this. I didn't want to teach myself how to inject B12 into my leg.

How else to stop myself from disappearing altogether?

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Nackapan

Yes . I was also told I would be cured. When I could hardly walk into the room the nurse said myou symptoms had nothing to do with b12 defiency. In fact the loding doses were nearly stopped as I got worse before better. It was only when restarted after 6 weeks i made real progress .

As you say you can't 'go back there'

Your normal gp might sort all this out for you. I hope so . Mine did eventually even if it was to shut me up. (Didn't care)

The stress is not needed .

At least you do self inject .

Take care.

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buster_uk

They seem to be looking for any excuse not to give people they treatment they need. "to do no harm" what a load of boldarks

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Cherylclaire
CherylclaireForum Support
in reply to buster_uk

Is it beyond imagination that we might all be different, and need different amounts of B12 -not to get better even, just to be able to manage our symptoms sufficiently to be able to earn enough money to get by, maintain relationships, keep in touch with friends ?

What do we have to lose and how many times before we are to be believed ?

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beginner1

Hi Cherylclaire I would probably told them I had given up but continue to self inject.They don't deserve the truth. But I think fbirder 's post suggests a much better way.

However if fbirder's idea fails mine could be a fallback!

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Cherylclaire
CherylclaireForum Support
in reply to beginner1

Could kick myself for not waiting to see my usual GP now, beginner1 .

Can't do lying : red face gives me away every time !

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beginner1

I am lucky I did not need to lie, I was asked if I still had injections from my private GP - yes once a week - I just did not mention the six I self inject in between.

But as my NHS have not given me a single injection, after the five loading, they do not deserve to know the whole picture.

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Cherylclaire
CherylclaireForum Support
in reply to beginner1

Fair enough.

A GP wrote, in the foreword to Martyn Hooper's book*, that he "often felt uneasy about the way about the way in which pernicious anaemia is diagnosed and treated"…..

wonder how many other GPs:

a) have any such qualms ?

b) would admit to that publicly (or even in a practice meeting) ?

I have a second copy of this book - thinking of sending it to that interfering GP. Even if he just read the foreword...… who'm I kidding ?

* "What You Need to Know About Pernicious Anaemia & Vitamin B12 Deficiency": Martyn Hooper.

PS: I met Martyn Hooper at a PAS meeting- he said "Of course you have Pernicious Anaemia - why else would you still be symptomatic?" - diagnosis enough for me !

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pitney

I do have PA and this happened to me when my old surgery closed 3 years ago and I saw a new doctor at the new surgery, I did say to him that I refused to go back to feeling so ill as I could find no evidence that injecting once a month caused a risk and that I was going to carry on doing it, so he took the B12 that they were giving me every three months off my prescription. Like you I have always been honest as I think any other way destroys any form of trust between you and the practice and could cause even more problems but it does mean that we always seem to have to keep fighting our cause

I really wish you all the best with your next appointment , good luck and good health :)

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Cherylclaire
CherylclaireForum Support
in reply to pitney

I'll let you know what happens, but they don't like u-turns much, do they, pitney ?

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pitney
pitney
in reply to Cherylclaire

You can say that again :)

All best wishes

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LWhelan

I think you choose your battles in life especially when you have a B12 deficiency and our energy is not what it could be. My GP was similar to this and simply would not listen............I elected to be kind to myself and take the easy route - I told him what he wanted to hear and continued to SI :) Plus I get my 3 monthly NHS one but I appreciate this approach is not for all.

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Cherylclaire
CherylclaireForum Support
in reply to LWhelan

I'm not sure that this battle didn't choose me, LWhelan .

What bothers me most about this situation is that I am finally clearly improving on my own regime and that it has taken since the start of 2015 to get to this point.

The GP who brought my case up at the practice meeting has not been involved in either my deterioration or my recovery. Or my referrals. Or my treatment.

But his recent interference could mean that, should my B12 supply from Germany become difficult to obtain, it is highly likely that I would have to deteriorate to the point of serum deficiency again just to be "allowed" NHS treatment.

I have appointments with

- Oral Medicine at the hospital on Monday (Inherited Metabolic Diseases consultant wants them to look at my tongue, mouth and angular cheilitis)

- My usual GP on Tuesday (Inherited Metabolic Diseases consultant advised me to go about my heart arrhythmia)

- Inherited Metabolic Diseases consultant in January, who have been studying my DNA to see if they can find a reason why I need such frequent B12 injections.

From this, you can see that either the Inherited Metabolic Diseases consultant is not aware how familiar the above problems are to the B12 deficient, or she is looking to eliminate all other causes for these problems.

I have seen many consultants and had a lot of tests since 2015. It really is not the B12 injections that cost the NHS money. It is the flat refusal to see the connection between a wide variety of symptoms necessitating a range of referrals.

I would like some answers after all this time, of course I would, but I would settle instead for a recognition that administering frequent B12 injections is slowly producing beneficial results . Then perhaps acknowledgement that my usual GP's original diagnosis in 2016 of functional B12 deficiency, confirmed by the laboratory, was correct.

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Coachlady11

I haven’t told my gp I SI for this reason

I tried the to get more frequent injections a number of times and was flatly refused in fact the doctor I saw said they were thinking of withdrawing injections as they didn’t do much good!!!!

I had to point out that as I had a confirmed PA diagnosis the injections couldn’t be stopped and she backed down but that’s when I decided to self inject

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Cherylclaire
CherylclaireForum Support
in reply to Coachlady11

Have you seen the feedback from the Pernicious Anaemia Society about research trials ?

There is very clear evidence that the trial group who need more than the NHS B12 injection regime and those in the other group that can manage their symptoms on the "normal" frequency can be identified simply by stool sample ! So research continues....

I appreciate that this may not be thrilling news to anyone not struggling to control symptoms, but seems highly promising to me. It may be sufficiently "sciencey" to appeal to your GP, though, Coachlady11 - what do you think ?

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Miss-guineapig

Poor you Cherylclaie, that is just awful! Well now I won't be telling my GP anything more than he needs to know. Keep us nformed please and I wish you well xx

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fbirder

It can help to keep your GP informed.

When I told mine that I was self-injecting he was, initially, shocked. Then I explained how B12 was available over the counter in Germany from long-established pharmacies (the equivalent of our Boots). I explained how needles and syringes were on Amazon. I explained that the nurse had shown me how to inject myself (so I could save the NHS money and myself the hassle).

He agreed to prescribe jabs every two weeks. He decided that I was going to do it anyway and that it was best if I did it with good old British hydroxocobalamin.

But I have pretty good relationship with my GP, so I felt comfortable having that conversation with him. YMMV.

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Miss-guineapig

Thank you for sharing that x

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Cherylclaire
CherylclaireForum Support
in reply to Miss-guineapig

Don't forget, Miss-guineapig , that this was brought up at a practice meeting by a GP who has only seen me once - and not my usual GP, who has been very supportive for years.

I still think that being honest with your GP is important if they are to help you. If you do not feel that you can trust your GP, I would find a GP within the practice that you can rely on. A relationship built on mutual trust, despite balance of power being not necessarily even !

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Miss-guineapig

Yes, your right Cherylclaire, it was just my initial response hahaha x

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Cherylclaire
CherylclaireForum Support

Totally get that, Miss-guineapig - if anything, it would make me very wary about seeing a GP I don't know whether I can trust !

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Cb1963

It's a really tough call with B12 problems, I have more or less begged my surgery to go onto a 2 monthly cycle, several months ago I developed a deep rumbling sensation, I mentioned this to the doctor and I was prescribed folic acid, I have constant pins and needles, the eye twitching, burning feet and I've ended up with ringing in my ears, the biggest problem is that doctors /surgeries follow 'guidelines' and that's your lot as they say, the bare minimum, its only through this forum that 'wedgewood' informed how cheap it is to order online, and reading your post I won't be rushing to disclose to my doctor that I intend to self inject, now saying this I was admitted to hospital for a surgery and they checked my bloods and they must of knew that i was B12 deficient because they asked when are you due to get your next injection, I never told them that I was getting injections, you must be at your wits end, especially when it's your body that's paying the price, it's a vicious circle, all the time I feel this condition isn't treated properly, especially if you have had stomach problems, or taking omeprazole etc, how many zombie's are undiagnosed are suffering?

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Cherylclaire
CherylclaireForum Support

Since my GP diagnosed functional B12 deficiency, it seems that consultants have been pulling out all the stops to prove her wrong, despite a confirmation from the laboratory.

I have been tested for many other diseases and conditions and found to be free of all of them.

Tomorrow I am going to an oral medicine consultant about my split and bleeding lips and I'm not even sure why anymore beyond Inherited Metabolic Diseases consultant wants me to. Then to my usual GP the next day because of heart arrhythmia - because Inherited Metabolic Diseases consultant wants me to.

Both of these problems I had assumed were just B12 deficiency indicators, with nothing more to find. But I don't want to be difficult and am still willing to eliminate any other suspected conditions, however unlikely they might seem to me, but this has to be an exhaustive list, even if every single last one of my symptoms is taken individually to the relevant expert in that field.

Eventually there has to be a conclusion after all this time, even a best guess on the grounds of probability. Let's hope that my DNA reveals something less ambiguous.

What a thing to wish for, I know, but this has been going on for well over 4 years now, and 3 years since that initial diagnosis.

Now I'm not nearly as sharp as I used to be, but even I know that IBS doesn't make your hair fall out !

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jillc39

oh goodness I ran into the same problem with my gp. I thought it good to be honest - but I was ordered out of the room! Now see another gp in the same practice and keep my lips closed over self injecting. I could never go for b12 injection every three months as they order - I just top up in between every week. Don't ask don't tell!

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Cherylclaire
CherylclaireForum Support

…...Would that they could demonstrate a fraction of that concern over undertreatment , jillc39 ! Seems more for their own protection than mine.

I would only offer this advice:

Get a good GP from the start, not necessarily an expert in B12 (who is ?) but someone who listens and researches, and then NEVER see anyone else. Unless about bunions etc !

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Retteacher

A word of caution about the use of the word 'functional' by doctors. This is often used by professionals as a code word for 'psychological' not as we might think to mean due to physiological problems in using B12 within the cells of the body. It may not matter if you have a sympathetic GP giving you injections, but it can 'colour' the attitudes and responses of other doctors.

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kcbrecks
kcbrecks
in reply to Retteacher

Thank you for that. I have to say it isn't an expression I have used yet with any of the professionals I have spoken to. I tend not to discuss it with any of them anyway, not since the practice nurse told me only half of an ampoule is needed and you can overdose on it.

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Cherylclaire
CherylclaireForum Support
in reply to kcbrecks

….You can imagine how skittery the nurses were when my regime went from one injection every 3 months to 2 a week on doctor's orders !

Tell her to Google "B12 and Toxicity": one of the nurses confessed to me that because she had never administered more than 1 injection every 2 months, she had done just this - and found that there is no overdose level, and that all that comes up is how huge amounts of B12 are used in emergency detox.

She was fine after that.

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Cherylclaire
CherylclaireForum Support
in reply to Retteacher

I can see that this could be the case but my usual GP, the one who diagnosed me as having functional B12 deficiency, then gave me 2 injections a week for 6 months, so I haven't had that experience. If anything, she was more concerned about my failing health.

The other doctor just completely freaked out about the amount of B12 I was self-injecting and worried about the source, which is why he brought it up at the practice meeting and then wrote me a letter about cancelling my NHS injections.

Oral Medicine consultant looked at the photos - and said that I clearly have B12 deficiency, that I am getting better than I was, that I needed to improve my iron levels, and asked me what he could write in his report to help me (!!!) He said that B12 off the top of measurable (>2000ng/L) would only be of concern to him because there is no way of telling, now that I'm improving, whether this is getting higher and higher. He suggested a gradual and monitored reduction to one injection a week, administered by my local practice, with my usual GP to check regularly.

Fine by me.

He also suggested that I have IFab test: when I questioned the reliability, and asked if I should ask for "best out of 3", he said "Why not ?" ... Great response, don't you think ?

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