Dr refusing more b12

[Marnie85]

About 4 months ago I started to feel so exhausted to the point where I couldn’t get out of bed. I had constant pins and needles in my hands and dizziness. My dr said my b12 was 120 so low but they said only slightly low and not enough to make me feel so ill. I persuaded them to give me 6 injections and after afew weeks the tingling and dizziness went but the fatigue is still here. 3 months after my loading doses and the dr said my levels are now fine so he won’t give me another injection even though my hands are again numb and I feel so dizzy. The dr said it’s probably me/cfs but I don’t know if I should start self injecting with b12 as my original symptoms have returned. What do I do? I’m so tired that I am barely functioning at all

[Gambit62 Administrator]

if you are UK based then try referring your GP to the BCSH standards and the BNF for treatment protocols for B12 deficiency. Serum B12 levels are a guide to identifying an absorption problem - they are not a tool to treating a deficiency (though can be helpful if levels come back low) - as it doesn't tell you how well the B12 is being used and the injections seem to fundamentally change the serum B12 levels that people need to function.

Unless you are a vegan or eat very little by way of animal products it is likely that you have an absorption problem - probably PA - that would need treatment with regular maintenance doses.

Where-ever you are you could try encouraging your doctor to take a look at the area of the PAS website aimed at helping medical professionals improve the diagnosis and treatment of PA

pernicious-anaemia-society....

you could also try joining and contacting the PAS for support in explaining to your doctor what treatment you really need

pernicious-anaemia-society....

pernicious-anaemia-society....

however, at the end of the day - you may well find you need to start self injecting, particularly if it is over 3 months since your last injection. You could try supplementing with high dose oral/nasal/patches as a way of topping up B12 but they aren't going to be effective at raising B12 levels if they have fallen. Some people respond well to supplementation but others find it doesn't help them at all.

[Sleepybunny]

Hi,

"The dr said it’s probably me/cfs "

A diagnosis of ME/CFS should be a diagnosis of exclusion eg other possibilities including B12 deficiency should be investigated before diagnosing ME/CFS.

Many of us on here have had a diagnosis of ME/CFS at some point. I found a diagnosis of ME/CFS meant all investigation into symptoms stopped. I had to be extremely persistent.

B12 deficiency can be misdiagnosed as ME/CFS.

b12deficiency.info/misdiagn...

martynhooper.com/2018/02/10...

martynhooper.com/2015/08/04...

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

B12 Deficiency Info website

b12deficiency.info/

B12 books I found useful

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

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

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

I've just put a lot of links about B12 deficiency and PA on Crafty Kit's thread below. Suggest you have a look as might be some info you find helpful.

healthunlocked.com/pasoc/po....

I'm not medically trained.

[Marnie85 in reply to Sleepybunny]

My b12 level was tested because of stomach issues and when I went to an out of hours doctor when I couldn’t get out of bed he told me my level was 120 and he considers anything under 220 to be very low. He couldn’t give me the injections so when I went to my own gp he said 120 is barely low and wouldn’t cause any noticeable symptoms. I had to beg for injections and he gave me 3 but when I still didn’t feel good he agreed reluctantly to give another 3. I was told from the start it wouldn’t be the b12 causing me to feel like this. I have had multiple blood tests but nothing else is coming up hence why they think it’s me/cfs. If my symptoms improved a little but not completely after the loading doses then wouldn’t that shoe it’s the b12? I am so dizzy and can’t balance well at all which I’m not sure are symptoms of cfs plus Iv had no virus or trauma or accident that would have caused it. I am having a gastroscopy and colonoscopy in a couple of weeks to see if that’s causing the low b12 but as my latest blood tests for b12 came back normal I am being refused any further treatment even though all my symptoms have returned. I want to start self injecting but I am unsure of how often I will need to do it and fed up of the gp asking if I am depressed!

[Sleepybunny in reply to Marnie85]

Hi,

Please think about contacting PAS.

pernicious-anaemia-society....

It's best to phone PAS, messages can be left. You may need to be a PAS member to access support.

PAS membership

pernicious-anaemia-society....

Blog post about how PAS can support those seeking PA diagnosis

martynhooper.com/2017/06/24...

Will add more tomorrow if I think of anything else.

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Have you been tested for PA?

In UK, this is an Intrinsic factor Antibody (IFA) test. Still possible to have PA even if IFA result is negative (called Antibody Negative PA). Some UK GPs may not know about Antibody Negative PA.

labtestsonline.org/tests/in...

Other countries may use a parietal cell antibody test (PCA).

labtestsonline.org/tests/pa...

Tested for H Pylori?

patient.info/digestive-heal...

Coeliac disease?

Guidelines below suggest anyone with unexplained B12, folate or iron deficiency should be tested for Coeliac.

NICE guidelines Coeliac Disease (2015 version)

nice.org.uk/guidance/ng20/c...

Coeliac Blood Tests

coeliac.org.uk/coeliac-dise...

Exposure to nitrous oxide?

gov.uk/drug-safety-update/n...

Any chance of internal parasites eg fish tapeworm? Do you ever eat raw fish?

UK B12 documents

I suggest reading all of these if in UK. B12 deficiency is not always well understood by GPs and specialists so I advise doing plenty of B12 homework in case doctors have not.

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines how PA and Antibody Negative PA can be diagnosed in UK. If you're in UK, has your GP followed this process?

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

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

NICE CKS

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

Link above suggests GPs should contact a haematologist for patients with b12 deficiency where neuro symptoms are present. Has your GP done this?

Dizziness and balance issues are usually considered as neurological.

Have you seen a neurologist? I used to ask for referrals in polite letters to GP along with evidence that supported request. GP does not have to agree to a request but putting it in a letter shoudl mean request gets filed.

If you see a neurologist, worth asking them to check your proprioception sense. This is awareness of body in space, proprioception problems can be associated with B12 deficiency.

Two tests that can check proprioception are

1) Romberg test

2) Walking heel to toe with eyes closed.

Videos about these tests on Youtube.

These tests should only be carried out by doctors at medical premises due to risk of a fall.

There are other possible tests for proprioception. If neuro does not do tests with patient's eyes closed then possible that proprioception has not been fully tested.

Do you have other neuro symptoms eg tingling, pins and needles, numbness, limb weakness, tremors, memory problems, restless legs syndrome, eyelid flickering, muscle twitches, word finding difficulties, tinnitus, electric shock sensations, insect crawling sensations plus others?

Is your GP aware that under treatment of B12 deficiency may lead to permanent neurological damage?

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...

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

b12deficiency.info/b12-writ...

Local Guidelines

Some areas of UK are using local guidelines on B12 deficiency that are outdated.

Worth getting hold of local guidelines and comparing them with national guidelines, it may explain why you have struggled to get treatment.

1) Try an internet search

2) Look on local NHS website under haematology policies

3) FOI (Freedom of Information) request to local NHS website

4) Ask practice manager for a copy of local guidelines.....this may irritate them.

Unhappy with Treatment (UK info)?

In UK, my understanding is that letters to GPs are filed with a patient's medical notes so in my opinion are less likely to be ignored than things said to GP or info handed over on photocopies.

Letters could contain list of symptoms, test results, relevant personal and family history, extracts from UK B12 documents etc. I suggest keeping letters brief and polite and always keep a copy for yourself. I used to include a request to put a copy of letter in my medical file.

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/

Link about "What to do next" if B12 deficiency suspected

b12deficiency.info/what-to-...

Blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

Iron Studies

labtestsonline.org.uk/tests...

"he said 120 is barely low and wouldn’t cause any noticeable symptoms"

I suspect your GP may not have read the latest articles and UK guidelines on treatment of B12 deficiency. They emphasise that people who are symptomatic for B12 deficiency should be treated even if their B12 levels are within range. See BMJ and BSH links.

I has multiple typical symptoms including many neurological symptoms of B12 deficiency with results that were between 300 and 500 ng/L.

I think at 120, many on this forum would be spending their days in bed.

Can you change your GP?

nhs.uk/common-health-questi...

If you can't, I guess the only option is to try to educate GP.

Does your GP know about section on PAS website for health professionals? Your GP could also join PAS for free as an associate member.

pernicious-anaemia-society....

PAS website has articles some on forum pass on to GPs eg

"An Update for Medical Professionals: Diagnosis and Treatment"

pernicious-anaemia-society....

In the end, many on forum choose to self treat.

To my mind this is an absolute last resort. I did in the end after years of trying to get treatment from NHS . For me it came down to a choice, some sort of life or a descent into dementia and possible spinal damage.

[deniseinmilden]

Self injecting is simple, easy and cheaper for me than driving to the Dr's!

You can fight with them to help you or you can help yourself and get your life back without the stress of knowing they could take it away from you at any time. Or even do both by way of making them aware of what they should be doing and having your own jabs available as an insurance policy for yourself!

At least you have had some injections so you know you won't get any bad reactions.

Go for it!

[Marnie85 in reply to deniseinmilden]

My friend is a nurse is coming round to teach my husband how to inject me coz I’m a wimp. How do I know how often to inject or is it just working out what works for you? If I have balance problems and numb fingers should I be injecting every second day for now?

[deniseinmilden in reply to Marnie85]

Definitely it's best to do what works for you.

Although I know it's important to get your levels up but I also question whether it's a good thing to flood your system after it has been so deficient.

While the British protocol is every other day injections, the Dutch think it's better to have one injection per week and that sounds more balanced and logical to me - if I could start again I would try once a week injections and increase them from there if necessary.

The loading doses seemed to trigger my autoimmune problems and since then I've needed 1.5mg hydroxocobalamin every day to stay reasonably well. I can't help but wonder if I'd started more gradually I might be able to cope with less! Who knows?

You could do a jab and see how it goes - it takes a bit of time for it to work. Then when you feel you are going down again try another one.

If you are injecting quite frequently you may well benefit from taking a broad spectrum multivitamin and mineral supplement plus extra folate, potassium, magnesium and iron, ideally from your diet.

Go for it! x

[waveylines]

Its shocking given your low b12 level that you have been treated in such an ignorant callous negligent way. Definately contact the PA Society. They have a telephone helpline open several mornings per week.

I would tackle it on two fronts:-

1. Write to your GP, describing all your symptoms, blood test result for b12, enclosing the guidelines for treatment of b12 deficiency with neurological symptoms and request your letter is put on your file. Request B12 injections alternate days for the unforseeable future. Ask for a response back from them within a specified period of time.....e.g. Three weeks.

2. Start self injecting b12. You cant afford to loose time on this and its likely your surgery will be slow to respond.

3.Be mindful that GP Surgeries are now private businesses -they are liable for poor practise so they should consider carefully if they refuse you treatment that they could be liable for damage they cause due to failure to treat.

Be prepared to have to be persistant but polite with your surgery.....dont let them get away with not responding or fobbing you off. They may refer you to a neurologist and pass it to them to decide.

Its so unfair that you are likely to have to take the above tact to get the treatment you should automatically get......but needs must! It annoys me that a doctors oath is 'first do no harm' yet many do end up doing harm where b12 deficiency is concerned through ignorance & lack of action.......

[Sleepybunny]

Hi,

Your local MP may be interested in hearing your story especially as your GPs don't seem to be following UK national guidelines on diagnosis and treatment.

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

Have you got copies of all your blood test results over last few years eg B12, folate, ferritin and other iron tests, full blood count (FBC)?

Access to medical records (UK info)

nhs.uk/using-the-nhs/about-...

Above link concentrates on online access.

Your GP surgery website should have details of how to access an online summary record. This summary record may not have all the info wanted. My understanding is that you can also ask for access to paper records; this may require formal written request to practice manager.

See links about macrocytosis (enlarged red blood cells) and full blood count in my other post.

Do you have any gut symptoms?

If yes, have you been referred to a gastro enterologist? A gastro specialist should be able to spot gut damage and work out what is causing it eg PA, Coeliac, H pylori or other causes.