Pernicious Anaemia Society
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Shocked by GP behaviour

Following on from my post last week about a possible B12 deficiency diagnosis I did manage to get to see my GP this morning.

Despite not expecting great things having read about the difficulties on this forum and elsewhere I was really quite shocked with the way I was treated.

The GP just reiterated that my B12 level of 134 was not low and so I had no deficiency. When I queried how that fitted with the NICE guidelines that stated a level below 148 was 97% reliable for indicating deficiency she dismissed it saying whether it was 148 or 130 it made no difference as there as no deficiency.

I asked how she was coming to that conclusion as my understanding of the guidelines was that the blood levels should not be the determining factor but the GP should take other factors such as symptoms, clinical picture etc into account. She just said all of the other results were normal so she knew. She wouldn't discuss with me what those results were and would not give me a printout instead referring me to the practice manager (who was not at the surgery) if I wanted any records. I specifically asked about any enlargement of red blood vessels. She said there wasn't any but wouldn't tell me the result. I said I understood that earlier tests had indicated enlargement and she just said yes there was but wouldn't discuss further.

When I suggested she should take any symptoms into account she said very brusquely 'what symptoms?' I started to say extreme tiredness, tiredness on waking, numbness and tingling in hands, dizziness, depression, bouts of diarrhoea.... (I had prepared a list) she just interrupted me before I could finish the sentence waving her hand and saying 'oh they can be caused by lots of things'.

She wouldn't listen to me at all. Not even for 30 seconds. I felt so disrespected and dismissed.

Despite all of this however she agreed I could have B12 injections (two weeks plus 3 monthly) but I am concerned at the total lack of interest. I requested a neurology referral but she said neurology don't accept referrals for B12. I asked her to make it anyway and if refused I would deal with it. She sort of shrugged so I'm not quite sure if that was an agreement. I tried to get her to agree to start the treatment on the basis of suspected neurological involvement so that the loading doses would continue but she didn't seem to understand and said they could review it after two weeks if there had been no improvement. I tried to explain that if there is improvement than that is the reason to continue until improvement stops but she just didn't get it (or didn't want to). I decided not to push things any further and so went to arrange the nurse appointment. At this point the receptionist tells me I can only have two injections each week as this is what everyone else has. I explained to the receptionist that I wished to have the treatment I was entitled to which was 3 per week for two weeks. She just said 'well you can't' we only have a nurse on Tuesday and Thursday. I just repeated that it needed to be three times each week and so she rang through to the doctor and said the doctor said twice a week is fine. Again I argued it was not fine. I asked for the practice manager or to speak to someone but she said there was no-one but asked if I wanted to speak to the doctor again. When I said ok she just said well you're number 10 in the queue now it will be about 2 hours. I asked if she was kidding as I had to go to work. She just sat back and folded her arms. I left.

I was really quite upset at being treated so dismissively, as if I was some sort of annoying problem to be disposed of.

Anyway - at least I have some treatment, even if I have to be belittled and ignored to get it. I just wonder whether the reduced loading dose will be effective or should I pursue it further? Also, whether I should be more persistent re any neurological investigations. Do they matter if B12 treatment is now being given?

Thanks for reading - helpful to have a rant

32 Replies
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Disgraceful treatment.

Can you change your GP, try one of the others at the surgery. She sounds as ignorant about B12 deficiency as so many are.

If you can't find a better one in your practice, I would take whatever is on offer and self inject between when you need it, (plenty of advice on here for s i.) and don't tell them that you are s i. with her attitude you may lose the ones they offer.

PS You are, by law, entitled to printout of your results, continue to demand them.

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I will definitely seek out alternative GP but will see if I can some suggestions in my area maybe from PAS. Some others in practice may be better but I had thought she would be ok as previously she has been good for other things. It’s rarely possible to choose who you see anyway so I think changing practice will be better. I will look into SI too once I see how it is done

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Perhaps if you mention your county here someone will know a good one. Although they are rather thin on the ground.

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Worth a try - I’m in Cardiff. Any good GPs around?

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There is a South Wales support group perhaps they could help.

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134 is extremely low , you must be feeling awful . Ask the receptionist for a print out , they can’t refuse . After your first injection at the surgery , I highly recommend you SI . You need to have first ever jab there as there’s a very tiny chance of allergic reaction . You need to know your folate , ferritin level etc . folic acid is needed to help utilise B12 so you definitely need to know your folate level . My husband went through what your going through now but I inject him weekly and he’s so much better , still long way to go but injections routine . I agree with beginner that you should consider changing gP or educate her by giving her lots of print outs . all the best , take care .

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Thanks for your reply. I am feeling pretty rubbish to be honest. Folate level is the only other result I know and that is 4.4 so quite low too I think. Never got chance to talk about that so may need to look for some OTC folate supplement once injections have started.

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"134 is extremely low"

One of the idiots at my surgery told me 103 <180 - 1000 was not very low!

Their ignorance is astounding.

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Hi Csl1 I agree with beginner1

You may need to battle further to ensure your Folate level is OK as initially, replacing B12 will lead to a huge increase in the production of blood cells and platelets (which occurs in the bone marrow) and can lead to rapid depletion of folate and iron stores; this can then limit the expected recovery of Haemoglobin. Both iron and folate may be needed.

I am not a medically trained person but I've had Pernicious Anemia (a form of B12 deficiency) for more than 46 years.

I wish you well.

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Hi. Yes I just mentioned in reply to beginner1 that folate level is 4.4 which I suspect is quite low despite GP opinion so will seek out some supplement.

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Folate is easy to deal with, (you need to start your B12 injections first I'm think?). Folic acid, 400ugs a tablet, x 90 tablets, is very cheap at the supermarket.

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Really sorry to hear of your horrible experience. If only there were a financial reward for the surgery for diagnosing B12 deficiency /PA, like there is for some conditions . You need a test for IF antibodies , to get a 50% chance of an accurate diagnosis for PA . My experience with my GP was bad too , (B12 blood serum level150 ). and resulted in my going to see a private GP at a Nuffield hospital , where I got an IF anti body test which proved positive . But in the end I had to resort to self -injection .to augment the 3 monthly bog standard injection . At least you will have a sympathetic reception here , Csl1 . But it’s so hard to fight when you are feeling so low . Please keep us informed about your progress . I wish you all the strength you need to fight to get the treatment you need .

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Sadly, I had no option but to leave the GP practice that i'd been a patient at for nearly forty years...they treated me scornfully when I mentioned about my levels. The practice I then joined did all my bloodwork again and I was put on a loading dose that same week.

Your doctor has already made her mind up I think...you may have no option to leave, like i did.

At the end of the day, you must do what is right for you.

Keep us all posted!

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Hi, When will some GP's work out that most only go to see them when we know there is an issue with our bodies. We don't go just to massage their ego's, I sadly had one draw around my feet whilst telling me that it was my shoes causing my PA. You might be surprised to read that I no longer opt to see that one :-)

Sadly there isn't much you can do.....

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You poor thing. As I not to far from you I'm wondering if mine and yours are sisters. Lol. I had a fight on with mine and long story short I now see another doctor at the practice. I have to queue from 7.45am to see him when he is on but its worth it. Personality I would change surgerys as yours seem to have like minded receptionists. Good luck. Oh Bridgend here. 😀

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Sorry to hear about your awful treatment. Having just been on injections for about a month myself (3x for 3 weeks at surgery and now so for 1 week since they wouldn't continue) my only concern would be - can you get any more tests done before you start the B12? Once you've started supplementing you really don't be able to get an accurate result ever again. It doesn't affect the treatment, but may help you *get* the treatment (maybe not at your current surgery, but if you move now or in the future). I didn't know enough about it and wish I'd had some more tests done - parietal cell antibodies and intrinsic factor antibodies (both are tests that have very unreliable negative results, but a positive is pretty conclusive proof that you cannot absorb B12), active B12 (holotranscobalamin) tests how much of the B12 you have is actually available to your body - the proportion is variable, MMA and homocysteine - two substances produced by your cells if they are suffering from lack of B12 (there are some other conditions that can cause this, but alongside your other results you can probably rule other things out). It takes 4 months for B12 injections to stop affecting the results, and you will *not* want to go that long without it once you've started - you will feel very sick! I doubt it's worth trying with that GP, but you can pay for private tests, depends if you can afford it. If not, just get on with the B12, and I hope you feel better soon. Yesterday I woke up feeling like the fog was lifting. Think I overdid it a bit though, need to go easy again today.

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I think excellent advice to ask GP for IF test before treatment , if result is negative it doesn’t rule out PA as test can be unreliable , avoid any folate until test as can mask b12 deficiency . Ask for a print out of your IF test result as can be handy if positive to remind future medics your treatment is for life , it’s come in handy for my husband when he’s seen consultants who’ve said things like “ you haven’t got PA as your not aneamic “ , such rubbish . Best of luck to you .

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Hi,

"excellent advice to ask GP for IF test before treatment"

Annnon58 and JoRR make good points about asking for IFA test and other tests such as Active B12, MMA, Homocysteine before B12 treatment starts.

I think IFA test can give a false positive, if blood taken close to B12 injection or B12 supplements.

labtestsonline.org/tests/in... See Anything Else section.

Results of Active B12 (HoloTC), MMA, Homocysteine test may be affected if blood taken close to B12 supplementation.

b12deficiency.info/b12-test...

active-b12.com/frequently-a...

Flowchart below outlines when PA and Antibody Negative PA can be diagnosed in UK and makes it clear that anyone who is symptomatic for B12 deficiency should have an IFA test, whether B12 is in range or not.

stichtingb12tekort.nl/weten...

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Ask a few pharmacists in the area which practices they rate? Mine told me to register at a certain practice if I don’t get anywhere with mine.

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I would also write a formal complaint to the practice manager and also send copies to your local CCG nhs.uk/Service-Search/Clini... - imagine this kind of information being given to less informed patients especially older patients and being robbed off! It’s an disgrace both not just the Dr but also the receptionist.

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Hi,

So sorry to hear about your experiences but sadly not shocked as I had difficult experiences myself with GPs and specialists. In fact the experience of doctors being dismissive and rude was harder for me to deal with than the physical symptoms.

"would not give me a printout instead referring me to the practice manager (who was not at the surgery) if I wanted any records"

I think requests for copies of records have to be signed off by the GP so may take a week or so to arrange. I would suggest handing in a polite formal signed request for copies to surgery.

You are entitled to have copies. They can only refuse if they feel that to give you copies could cause you harm in some way. See links below.

Access to Medical Records (England). Process may vary in rest of UK.

nhs.uk/NHSEngland/thenhs/re...

nhs.uk/chq/pages/1309.aspx?...

You can also ask to view your records, this is free. Think you would need to make an appt with practice manager to do this.

I sometimes used to follow up difficult appts with a polite, formal letter outlining my concerns over treatment, symptoms, extracts from UK B12 documents , family history etc. In UK, my understanding is that letters addressed to GP have to be filed with a patient's records so are a record of issues raised. In appts, I sometimes referred to letters I had written previously and the GP then had to look them up.

Letters are harder to ignore in my personal opinion whereas things said in an appt may get forgotten or not recorded.

Letters to GPs about b12 deficiency

b12deficiency.info/b12-writ...

"I requested a neurology referral"

I used to put requests for referrals into a letter to GP along with any evidence eg symptoms, extracts from documents that supported my request. As above, this should mean there is a record of the request in medical file so hopefully harder to ignore .

Word of warning...

Some GPs find it irritating if patients write letters and try to challenge their decisions. The doctor/patient relationship may become strained. Pressure was put on me to leave one surgery.

Unhappy with treatment (UK info)

Patients' rights

citizensadvice.org.uk/healt...

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

Local MP may be interested in cases where people are struggling to get treatment they are entitled to.

parliament.uk/mps-lords-and...

Advocacy Services

seap.org.uk/services/nhs-co...

voiceability.org/support-fo...

"I am concerned at the total lack of interest"

I wondered if GP might find some of following helpful.

1) Section on PAS website for health professionals

pernicious-anaemia-society....

2) PAS leaflet "An Update for Medical Professionals: Diagnosis and Treatment ", only available to PAS members.

pernicious-anaemia-society.... See Page 1.

3) Book "What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper.

4) UK B12 documents below

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

bnf.nice.org.uk/drug/hydrox...

NICE CKS

cks.nice.org.uk/anaemia-b12...

"I just wonder whether the reduced loading dose will be effective or should I pursue it further? Also, whether I should be more persistent re any neurological investigations. Do they matter if B12 treatment is now being given? "

My personal view (I'm not medically trained) is that it may be helpful to have a neurology referral. It's important to exclude other possible causes for symptoms . I will warn you that lack of understanding of B12 deficiency can occur in neurologists and other specialists as it can in GPs so be well prepared before any referral.

UK B12 treatment

( See BNF, BSH, NICE CKS links for more info)

1) For B12 deficiency without any neuro symptoms

6 B12 loading jabs followed by a jab every 3 months

2) For B12 deficiency WITH neuro symptoms

A B12 loading jab every other day for as long as symptoms continue to get better (could mean loading jabs for several weeks even months) then a jab every 2 months.

You mention "two weeks (of 2 per week) plus 3 monthly" which is close to treatment pattern for those without neuro symptoms. You also mention having neuro symptoms so my understanding is that you should be on second treatment pattern above.

I hope your GP is aware that under treatment of B12 deficiency could lead to further deterioration including potential spinal problems.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, avialble to PAS members only.

pernicious-anaemia-society....

Blog post from Martyn Hooper's blog, mentions SACD

martynhooper.com/2010/09/21...

Letters to GP about under treatment of B12 deficiency with neuro symptoms.

b12deficiency.info/b12-writ...

If all else fails and people cannot get appropriate treatment, some choose to self treat. I did for several years.

"will definitely seek out alternative GP"

PAS support groups may be useful sources of info about helpful GPs. We can't name GPs on the forum due to privacy issues. There is a PAS support group in South Wales.

PAS support groups in UK

pernicious-anaemia-society....

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

If you're a PAS member , PAS may be interested in hearing about your experiences.

NHS Choices

You could look up reviews of GP surgeries in your area.

nhs.uk/Service-Search/GP/Lo...

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Wish I could say unbelievable but sadly all too believable- well done for standing your ground - I’ve tried & couldn’t do it - changed surgery & same story but now found one dr who appears to listen - good luck

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Hi Csl1, I have had similar issues with GPS at my surgery. The first one told me that injections weren't given unless B12 was below 100, mine was 118 so she put me on low dose tablets for months. Also my Intrinsic factor and parietal cell antibody tests were both negative. I felt terrible, although did improve a little. My level did come up a bit eventually but fell again of course when I was told to stop taking them. It was 167/176 after a few months and all my symptoms were getting a lot worse again. I then saw a new GP at the same surgery who told me I didn't have PA and didn't need injections. I told her I disagreed with her and took in guidelines etc from PAS. She just ignored the paperwork I took in but reluctantly agreed to give me the injections, (just to shut me up I felt).

She referred me to gastro-enterology for investigations. I had an endoscopy which showed nothing significant.

I have been on injections now for 18 months and feel better on them but struggle the for last month before my injection is due.

I avoided going back to the doctor because I couldn't face it until recently when I felt I had to because of the fatigue, I was struggling to walk my dog, and the memory problems. It was starting to get me down. I was hoping to increase the frequency of injections to 8 or even 10 weekly.

I saw a different doctor, hoping he might be more understanding. Not so, he told me I "looked anxious" was "fixated with B12" and focusing only on physical symptoms while "refusing to acknowledge the psychological aspects". Of course I was anxious, as I explained to him, every time I go to the doctor for help there is some level of confrontation. He thinks I have Chronic Fatigue Syndrome and I had to agree that the symptoms seem the same, but then why is my B12 low? I still have no answer for that.

I have spoken to Martyn Hooper from PAS and he has said I need a diagnosis. I should go back and give the doctor the new guidelines and advise him to contact PAS if he has any questions.

I will do that when I have psyched myself up enough!

Sorry for the long reply. I hope it helps to know you are not alone. Also I would strongly reiterate what others have said. Ask for the Intrinsic factor antibody test before you take any injections as otherwise the results will be inaccurate. If it comes back positive then you can have a clear diagnosis of PA.

The parietal cell antibody test is no longer recommended I believe.

Best of luck.

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Hi,

Just wanted to send a brief reply Lynda3007 as it's someone else's thread.

"He thinks I have Chronic Fatigue Syndrome"

B12 deficiency can be misdiagnosed as ME/CFS. See my thread on forum about ME/CFS Protest, a month ago.

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Thanks, will do!

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I can't understand why so many GPs are unwilling to prescribe B12 shots. The shots are so inexpensive. My doctor told me that it costs him about 10 cents a shot. It takes the nurse about 5 minutes to inject my shots. So simple and so cheap. It's not like the B12 is going to hurt anyone so why not try it and see if it helps.

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Sounds like my doctor. Also, the neurologist was worse so be prepared. I have cried after every appointment with a specialist. I am respected at work by my colleagues, municipal staff and officials, and am successful and an effective leader - both at work and in my volunteer role. But my experience with the doctors has been to have them belittle and humiliate. Totally dismissive of symptoms and guidelines - because they “know” it is not due to b12.

I am so so sorry that your doctor treated you this way. It’s frightening and hurtful.

On a happier note, since April I self inject and take supplements (including some adrenal and thyroid support vitamins and DHEA). I had about six months I can barely remember and many months of slow deterioration prior to that. I now actually feel normal. I never thought I would say that again. I hope you get there too.

Good luck and don’t be scared to vent - you’re going to need it.

Take care!

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Just to mention on top of all the lovely advice already given, once you begin treatment, you need to aim to raise your folate level to the upper teens and your ferritin to 80. This will help support the absorption of the B12.

As your level is so low, you may experience a dip in your potassium levels which will be helped by having potassium rich food and drink. Coconut water is good. As you've experienced, GPs know so little about b12 deficiency that they will have no idea of this.

All the best in your recovery. It will take time, but you will be feeling so much better very soon.

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Hi all. Thank you all for advice, tips and moral support. Much appreciated. I will get some jabs done then regroup and think about what to do next. I did already have the IF antibody test but it was apparently negative but I have no details of exactly what tests have been done. I don’t want to postpone the chance of feeling better so will go ahead with first injection tomorrow. I will look for supplements for iron, folate and potassium to take once injections have started as think that is a safe way to do it (please correct if wrong). I am going to think carefully about GP relationship/changing/putting things in writing once I calm down a little. PA Society on hols right now so will talk to them too when they are back (I joined already).

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If you only get two shots a week, the least you can do is to ask to have it for three weeks minimum. That way you'll get the six shots, even if it takes a week extra. BTW, I'm as shocked as you about how they treated you, but I've come to realise that doctors are no better than their education, and they may not have learnt what they need to know about b12. Still, they have a responsibility to keep their knowledge up to date, and it is clear this doctor isn't willing to. It's weird, as if they don't want their patients to get any better, not even when the treatment is cheap, simple, safe, and necessary.

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There is one possible reason for your GP’s attitude over your level of 140 and that is she thinks any level is ok and to be deficient there shouldn’t be any. Wrong and muddle headed but could possibly be what is going on. Trying to educate some of them can be an uphill battle. As one old Yorkshire friend used to say ‘Tha canna teach poork!!

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United Kingdom - seems to be a postcode lottery re injections - should be a least every 6 weeks - is actually over 3 months. No idea re self injections or costs. Is there an official leaflet that can be handed over to G.P’s and “specialists” who are so derogatory in their attitudes? Although I must admit even my doctor and chemists fondness for cheap brands overrode common sense re necessity of specific brands of anticonvulsants!

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