Blood testing Whilst on B12 Jabs 🤷‍♀️

[Meggymoo63]

So I have now been told I have to have a blood test to check my B12 levels. I refused last year as I have regular 8 weeks jabs so pointless testing. I have heard they are reviewing all patients whom have B12 jabs and reviewing treatment 😡 I have refused again as I have PA and already on regular treatment but no choice this time 🤷‍♀️ My worry is they will decrease my jabs due to high B12 levels which it will be and of course doctors do not understand that their testing only shows what it floating around in the body not actually absorbing at cell level. I feel I may have a fight on my hand if they change my treatment and always really worried I will become poorly again as I suffer neuro damage.

[Sleepybunny]

Hi,

If you're in UK

1) I suggest joining and talking to PAS before your next appointment. They should be able to point you to useful info to pass to GP. PAS can sometimes intervene.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

Support groups can be a useful source of info on helpful GPs in area if your GP is unhelpful.

There are useful leaflets/articles in PAS library section on website eg

" An Update for Medical Professionals: Diagnosis and Treatment " which some PAS members have passed to GPs

pernicious-anaemia-society....

2) If you're in UK, look through following UK documents and pick out the passages that suggest testing B12 after treatment is irrelevant. Particularly BSH guidelines.

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF

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

BNF states that for those with neuro symptoms, maintenance injections should be every 2 months.

Perhaps you could ask GP to check BNF Hydroxycobalamin entry online or his/her copy of BNF book. Relevant entry is in Chapter 9 Section 2.1 (or is it section 1.2?). It's possible to buy a copy of BNF from popular online retailer.

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

Even without neuro symptoms, guidance now says that jabs can be every 2 or 3 months.

There is a useful summary of B12 documents in third pinned post on this forum that addresses issue of testing after treatment has started, may be useful info in that.

3) Persuade your GP to join the PAS. It is free for health professionals to join.

There is a section on PAS website for health professionals.

pernicious-anaemia-society....

4) My personal view is that letters are likely to be more effective.

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

5) If all else fails, some on forum choose to self treat using a variety of methods eg sub lingual B12, patches ..think most self inject.

Sorry got to go...will add more later if can think of anything.

I'm not medically trained.

[Meggymoo63 in reply to Sleepybunny]

Thank you so much 😊 I belong to B12 forum but like a minefield trying to fling the appropriate info. This is very helpful. I am making appointment with my GP before I have to had bloods in August so have time to gather all relevant info together. I am in UK and actually may already be a member of PAS. thanks again xx

[Sleepybunny in reply to Meggymoo63]

Hi,

If you're not sure about whether or not you are a member, I'm sure PAS office can help if you ring them. See PAS details in my other post.

PAS forum on HU is separate from PAS so forum members are not always PAS members.

If you're not a member then it costs about £20 for a year's basic membership. There are three types of membership.

pernicious-anaemia-society....

There may be stories on these blogs that are relevant to you.

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

My understanding is that in UK, letters to GPs are filed with medical records and are therefore less likely to be ignored in my opinion.

I have written brief, polite letters in the past which contained symptoms lists, blood test results, relevant family and personal medical history and relevant extracts from B12 documents.

Things said in an appointment may get forgotten or not recorded in notes. Info on photocopies may not get looked at and worse, I suspect sometimes gets filed in the bin.

Letters to GP received before an appointment means that GP has time to do their own research and it can also avoid face to face confrontation .

Always keep your own copies of any letters you write.

Some GPs find it hard to cope with a well-informed assertive patient so be prepared for GP/patient relationship to come under strain and have a back up plan in case this happens eg another GP surgery.

Do you have someone supportive who can go with you to appointments? It's my impression that GPs are sometimes kinder if a witness is present. Even better if person has read about B12.

Injections stopped

Some forum members with confirmed PA have had their B12 jabs stopped because their blood results came back high.

PAS treatment is for life and should never be stopped.

If this happens to you, I suggest contacting PAS as soon as possible.

Post on the forum again as well.

There is a leaflet in PAS library "Treatment is for Life"

pernicious-anaemia-society....

"I have heard they are reviewing all patients whom have B12 jabs and reviewing treatment "

PAS chairman Martyn Hooper may be interested in hearing about this.

I suspect cynically that these reviews are sometimes because of wanting to reduce costs rather than improving patient care.

B12 jabs are cheap but nurses' time to give them isn't.

If you think cost is an issue you could always ask to be shown how to self inject as this would be cheaper for surgery.

Stopping or reducing treatment below recommended levels can have severe consequences.

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....

Blog post from Martyn Hooper's blog, mentions SACD

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

If treatment is reduced or stopped see following links as well

b12deficiency.info/blog/201...

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/

"My worry is they will decrease my jabs due to high B12 levels "

If you think that is likely to happen, you could see if they find these articles interesting.

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...

High B12 levels would be expected if on B12 jabs so stopping jabs because of high levels does not make sense to me.

Proof of PA diagnosis

Some forum members have had jabs stopped when they queried treatment because the GP surgery said they couldn't find any record of PA diagnosis in notes.

Some forum members get a complete set of medical notes, likely to be a charge for printing this out. Some UK GP surgeries have online access to a summary of records/results. Details will be on surgery website.

Test for PA in UK is an Intrinsic Factor Antibody test (IFA).

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 does not contain updated BNF info on B12 treatment.

"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".

[JMN2017]

Meggymoo63

This is from NICE guidelines re B12 -

"What monitoring is required after treatment for vitamin B12 or folate deficiency has started?

Perform a full blood count and reticulocyte count:

Within 7–10 days of starting treatment.

A rise in the haemoglobin level and an increase in the reticulocyte count to above the normal range indicates that treatment is having a positive effect.

If there is no improvement, check serum folate level (if this has not been done already).

After 8 weeks of treatment, and also measure iron and folate levels.

The mean cell volume (MCV) should have normalised.

On completion of folic acid treatment to confirm a response.

Measuring cobalamin levels is unhelpful as levels increase with treatment regardless of how effective it is, and retesting is not usually required.

However, cobalamin can be measured 1–2 months after starting treatment if there is no response.

Neurological recovery may take some time — improvement begins within one week and complete resolution usually occurs between six weeks and three months.

Ongoing monitoring is unnecessary unless a lack of compliance with treatment is suspected, anaemia recurs, or neurological symptoms do not improve or progress.

*Bold is mine for easier finding relevant info

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

[Ritchie1268]

Same with me, even though I told my Dr guidelines say it's pointless testing levels once treatment started.

Never the less, he insisted I had one, the daft thing is, my blood was taken just 10 minutes after I had a B12 injection 🙄

Obviously came back high, that's when I started self Injecting & he has seen a big improvement in me since SI every other day since Xmas.

[Meggymoo63]

Thank you so much for all advice and comments 🤗 I have been having jabs for the last 6 years without any problems from my doctor so really upset that this is happening.

[Thulasi1 in reply to Meggymoo63]

Hi Meggymoo63 ,

Since you mentioned you are jabbed from 6 years is your nerve damage completely recovered. I am asking because NICE guidelines mentioned 6 weeks to 3 months for nerve damage repair.

[Hanneke12 in reply to Thulasi1]

She's only having an injections every 8 weeks, so just the maintenance dose... the 6 weeks to 3 months you're talking about is the loading dose of 2-3 injections a week (which by the way according to other guidelines should in case of neuro damage be continued for 2 years or until symptoms no longer improve!)

[Meggymoo63 in reply to Hanneke12]

All neuro damage went on 8 week jabs which is why I need to stay with treatment as it is now.

[Hanneke12 in reply to Meggymoo63]

That is awesome, Meggymoo63 , so happy for you! And am sure you will find a way to stay on this maintenance dose. It's not too much to ask.

[Thulasi1 in reply to Hanneke12]

Ok. I am about to complete 3 month loading dose ever other day. Seems like it’s going to take more time for nerve damage repair.

[Hanneke12 in reply to Thulasi1]

Unfortunately, some damage may be beyond repair. The idea is to continue loading doses until symptoms no longer improve, not until they have gone away... So: until you hit a plateau, then slowly switch to maintanance doses.

Wishing you well and hope they will go away of course! Am also in that situation, seeing that things are still improving and hoping I will be totally fine again

[Mannequin18]

Hi, I am in the same boat. I have PA and Hypothyroidism. My B12 levels are high, and the doctor is going to test me before each B12 injection. I have one booked for tomorrow. As we who have PA know it is pointless to test, it will tell them nothing. So why are they doing it. It is not an expensive medication, and I only have mine 4 times a year. I am puzzled and angry.

[Meggymoo63]

I also have hypothyroidism and I feel your anger. I am confused and disappointed with it all. I have made appt with my GP and will be sending on all relevant info before my appt. to discuss everything. What is so worrying is I have neuro damage which is not being taken on board so will be asking to be referred to a specialist. Your GP is not following NICE guidelines. It is a case of our lives in their hands 😕

[ByGrace]

You can inject yourself. As often as you need. You can source your own supplies. MANY people do not get adequate help from their doctors and are sustaining neuro damage and learning to help themselves. If you want sourcing information, let me know where you are [Country] and I will get for you.

[Sheepysammy in reply to ByGrace]

Well if you don't mind sourcing for me too, I live in England

[ByGrace in reply to Sheepysammy]

Hydroxo or cyano or? What are you needing?

[Sheepysammy in reply to ByGrace]

I am not sure i get an injection from nurse at g.p. surgery every 3 months. Would it matter what i used? I don't have P.A. i have an intolerance to absorption through my digestive system according to my doctor

[ByGrace in reply to Sheepysammy]

Well I can;t tell you where you can get cyano if you are doing hydroxo and I can;t tell you to get it from somewhere in the UK if you are in Canada,,,

[ByGrace in reply to Sheepysammy]

I just realized rereading you already said you are in England.. [doh] But need to know what kind of injection you are taking and can give a link for that....

[Mannequin18 in reply to ByGrace]

Hi, I would really like to be in charge of my own medication, but I can't seem to find out where to get Hydroxocobalamin from. I seem to come to a dead end. Any help would be appreciated. Thad nk you. I am in UK.

[ByGrace in reply to Mannequin18]

1000 mcg? 10 X 1 ml

mycare.de/en/online-kaufen/...

[Mannequin18 in reply to ByGrace]

Thank you.

[Sleepybunny]

Hi again,

Loading jabs

Meggymoo63 when you were first diagnosed and started treatment how many loading jabs did you have?

I am curious to know whether or not you had the recommended pattern of loading jabs for someone with neuro symptoms.

1) Recommended UK B12 treatment for patient with b12 deficiency without neuro symptoms is .....

6 B12 loading jabs over 2 weeks followed by a jab every 2 or 3 weeks

2) Recommended UK B12 treatment for patient with b12 deficiency WITH neuro symptoms is .....

A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months.

These every other day loading jabs can continue for weeks even months if improvement continues. There is not set time limit in guidelines.

If you had neuro symptoms my understanding is that you should have had every other day loading jabs for as long as symptoms were still improving.

I'm just thinking that you may have a reasonable argument to ask for loading doses to be repeated if you didn't have the correct pattern of loading doses at start of treatment.

See link below about writing to GP if under treated for B12 deficiency with neuro symptoms.

b12deficiency.info/b12-writ...

MPs

If you are denied recommended treatment or treatment is stopped altogether then local MP may be interested. MP's website should list when MPs and their case workers hold advice surgeries.

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

"My worry is they will decrease my jabs due to high B12 levels "

If they do try to reduce them then you could ask them directly why they want to reduce them. I suspect they may come out with a daft comment such as high level of B12 is toxic.

If you know why they are thinking of reducing them you can tailor any response/letters to address the specific reason.

Incidentally, if they do say high levels of B12 are toxic you can point out that very high doses of B12 are given in cases of cyanide poisoning eg 5g over quarter of an hour then more for adults. See section on treatment for cyanide poisoning in link below. Jabs for B12 deficiency usually contain 1mg of B12 (0.001 of a gram).

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

"their testing only shows what it floating around in the body not actually absorbing at cell level. "

Link below mentions Functional B12 Deficiency where there is plenty of B12 in blood but it's not getting to where it's needed in the cells.

b12deficiency.info/b12-writ...

I sincerely hope that your jabs remain at the current level if you feel well on this level of treatment.