GP saying no more jabs as result high

[JanCymru]

Just had full bloods as I'm feeling awful. GP suspected low folate or ferritin, but only B12 has come back so far - high, so just had a call from the surgery saying that they will be stopping the B12 jabs!! I was diagnosed PA over 20 years ago, through the old Schilling test (also am Coeliac), so there is no way I can take in enough B12 in my diet hence the injections. I'm going to make an appt to see a GP and ask why. Any advice as to what I should mention, or take with me in the way of paperwork to support my request that jabs continue.

[clivealive Forum Support]

Hi JanCymru how long after your last B12 injection was the test done?

Any doctor worth his salt will know that with P.A. B12 injections are for life.

I suggest you join the Pernicious Anaemia Society click on the link below and scroll down

.

healthunlocked.com/api/redi...

It costs £20 per a year's membership and they may intervene on your behalf with your doctor.

I too was diagnosed via a Schilling test.

I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 46 years.

I wish you well.

[JanCymru]

Hi Clive, thank you for your very quick reply, much appreciated. I have been having jabs every 8 weeks for the past year or so, at the suggestion of the GP as I am coeliac, have osteoporosis and there is a direct history of Alzheimer's in my family. (Prior to this when I was diagnosed in 1998 they were loading doses and then 3-monthly until about a year ago). Next one is 7 March (unless they cancel it!). I am a PAS member already, so very much value the Martyn's and your input and advice here. Thank you for the link, much appreciated and I will go armed with my paperwork! My head is all over the place with this latest development, and I've got to remain calm otherwise I can see the appointment going badly! Thank you again.

[fbirder]

I suggest you print out the BCSH guidelines, highlight the relevant section quoted below, fold them up until they're all sharp corners and suggest your GP stick them where the assistance of a proctologist would be required to remove them.

Or you could just post them.

onlinelibrary.wiley.com/doi...

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.

[JanCymru in reply to fbirder]

Thank you birder!! You have actually made me laugh for the first time today!! Your suggestion is brilliant and I have the most wicked image in my head at the moment....!! Printed it off, highlighted the section you have mentioned and will keep you all posted on the outcome. Bless you all.

[Ssmart]

When I last went to the doctors they said to make an appointment to discuss whether the jabs were still helping me... and they also said there’s no point doing a blood test when on b12 injections as it will always come back high but that’s no indication of how much you’ve absorbed, and that if I was feeling benefits still that was the indicator I needed them still!

Occasionally my doctors surgery get something correct 😁

[JanCymru]

Hi Ssmart, thank you for your reply too, much appreciated. Well, I'm no further forward - can't get an appointment to even discuss the matter at present. No appointments available, and the GP that sanctioned 8-weekly jabs about a year ago has left. (Surgery has been taken into special measures so locum GPs and all sorts going on). I couldn't understand why my B12 was being checked as I know it will read high, but as you've said, that's no indication of how well it is being absorbed. I have printed out the documents fbirder and CliveAlive have highlighted and WHEN I get to see someone, I will try to remain calm and present my case. And I will keep you lovely people informed too.

[JMN2017 in reply to JanCymru]

When you do manage to get an appt, would you be able to take someone with you? Doctors are often so much more 'attentive' and 'listen' better when patient is not alone!!! They wouldn't need to say anything except, maybe agree with you on various points, ie severe symptoms etc. Wishing you the best of luck.

[JanCymru]

Hi JMN2017, yes, that might be a good idea....was thinking of jotting a few points down so I don't forget anything and also as I'm feeling a bit fragile I didn't want to mess it up by dissolving into tears...thank you for your good wishes.

[Sleepybunny]

Hi,

Have you considered writing a brief, polite letter to reach GP before next appointment?

It could include symptoms, test results, medical history, extracts from B12 documents etc.

UK B12 documents

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...

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

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/

MPs should be interested in hearing from people who have had necessary treatment withdrawn.

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

Blog post about help if B12 injections are withdrawn.

b12deficiency.info/blog/201...

Might also be worth asking to speak to/send a letter to practice manager pointing out that PA treatment is lifelong. I'm sure GP practice would prefer to avoid the possibility of a formal complaint being made.

PAS have leaflet "Treatment is For Life" which some forum members have given to GPs.

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

GP practices may become defensive if they feel someone is being critical and some GPs find it hard to cope with assertive patients so be prepared for GP/patient relationship being affected.

I think you have to weigh up the risks of annoying GPs with the risk of permanent neurological damage if treatment is withdrawn.

Is your GP aware of risks?

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

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

pernicious-anaemia-society.... See Page 2.

Blog post from Martyn Hooper's blog, mentions SACD

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

I think your best bet is to contact PAS as soon as possible. Sadly they are used to supporting people whose injections have been withdrawn.

martynhooper.com/2018/12/23...

martynhooper.com/2016/09/23...

martynhooper.com/2016/04/24...

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

Is there a support group close to you?

If all else fails, some forum members choose to self treat.

I am not medically trained.

[JanCymru in reply to Sleepybunny]

Hi SleepyBunny, thank you for the very lengthy reply and information, very much appreciated. I'm pleased to report that I managed to get an appointment (haven't long been back), and at the suggestion JMN2017 I took someone with me (hubby!), and although he didn't say anything to the GP (locum, who I've never seen before), I think his presence sent a supportive message to the GP. Anyway, the GP said level of B12 was measured as very, very high (1,150), and therefore I wouldn't have any further jabs, but they would monitor. Also, did I have a formal diagnosis of PA? Fortunately, I had gone through my very large folder and found my original letter of PA diagnosis from 1998, and had the gumption to take this with me, so with a little flourish I produced this! I think he was taken aback, BUT then said you have sufficient reserves for 2 years and still no need. I then referred to the levels not being an indication of how I was feeling and that I realised blood tests were only a snapshot of the B12 currently circulating in my system, but maybe no indication of how much I was actually using correctly. I also highlighted that a previous GP had in August 2015 actually voluntarily suggested that my interval be 8 weeks rather than the traditional 12 weeks, due to my age, being a diagnosed Coeliac, having osteoporosis and there is a strong family line of Alzheimer's. He looked again at the bloods (all the rest were fine, but I haven't had a print out - will tackle the practice nurse for a copy next week when I have my B12), and then he said, 'well, if you really think you want to go down that path' etc, Yes, please! So, I have my B12 jabs continuing! Thank you all, so, so much for your help, advices and generally being there when I needed a much needed boost!

Thank you all!!

[Sleepybunny]

Hi,

"He looked again at the bloods (all the rest were fine"

These days I don't trust what I am told about blood results unless I have a copy in my hand.

Help for GP

1) PAS have a section on website for health professionals who can join for free.

pernicious-anaemia-society....

2) I gave my GPs a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and B12 Deficiency ".

Book was published before BNF guidance on B12 treatment changed.

pernicious-anaemia-society....

3) PAS leaflet "An Update for Medical Professionals: Diagnosis and Treatment".

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

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

"Also, did I have a formal diagnosis of PA? ....found my original letter of PA diagnosis from 1998.... so with a little flourish I produced this!"

Have you kept the original letter or did you give it to GP?

Having a letter confirming PA diagnosis is like gold dust so guard it carefully and make a copy or two. There have been forum members who, when they challenged GPs about stopped injections/reduced frequency, found there was no PA diagnosis in their records.

"a previous GP had in August 2015 actually voluntarily suggested that my interval be 8 weeks"

Your current GP should know that if any neuro symptoms were/are present, B12 injections should be every 2 months. See BNF, BSH and NICE CKS links.

"GP said level of B12 was measured as very, very high (1,150), and therefore I wouldn't have any further jabs"

Did he explain why he was concerned about high level?

Treatment with high dose vitamin B12 been shown to be safe for more than 50 years

stichtingb12tekort.nl/weten...

Misconceptions about a B12 deficiency

stichtingb12tekort.nl/weten...

[JanCymru in reply to Sleepybunny]

Hi SleepyBunny, Thank you again for all the time you've taken with your reply, you really are a star!!

Yes, I quite agree with you I'm not trusting the gp saying the rest of the bloods were fine; when I go for my B12 jab on 7 March, I will get the nurse to print out my bloods and will file with the rest of my copious paperwork!

I've been a 'Legacy' member of the PAS for about 4/5 years, but just a few days ago, I 'cancelled' that and rejoined as a Life Member, that way I will have access for life and the joining fee will help the Society in general.

Got all the books you've mentioned.

My letter of original diagnosis was shown to the GP today, but I have the original. No way is that leaving my side! (I might frame it!!).

The previous GP In August 2015 upped my frequency to 8 weeks, due to some additional numbness in my right foot. The frequency seemed to hold it OK, and no further numbness developed.

As to the high level, his reasoning was that the pathology report has stated 'sufficient levels for 2 years' - hence stopping the jabs, but monitoring. Anyway, we are back to the status quo now, 1 jab every 8 weeks. But any further problems with the surgery and I'll simply look into SI.

Thank you again for your help and input, deeply appreciated and valued.

[Cherylclaire Forum Support]

Yes I would frame it - I've a strong feeling that PA diagnoses are now very rare things.

Sounds as if the previous GP, who upped your frequency to 8 weeks was trying for an acceptable maintenance level for you - which seems to me to be the entire point.

I have had very very very high levels in the past after injections started : >2000 ng/L, which must be their measurable limit.

My GP regularly tests both folate and ferritin, because both tend to drop if I don't supplement , and because unlike B12, too much can have detrimental effects. She never bothers testing my B12 levels any more as she knows full well they will be high. She also knows I'm not "cured" of B12 deficiency and that I self-inject because a maintenance level for me is more than she is able to offer.

[JanCymru]

Thank you for your reply and information Cherylclaire, all information shared among us is so useful for the bigger picture. Much appreciated. That letter outlining my PA diagnosis is staying safely in my folder!!