What have I got?

[Amth]

Hi I’m Anne and at my wits end, I have been having b12 injection for almost 2.5 years, for the past 12 months I have been so forgetful, I could sleep on a clothes line, my head feels so heavy, just generally lethargic after breaking down in the doctors surgery and crying, he sent me for more blood tests, I received a telephone call saying I needed folic acid, I’m hoping for a mjracle to resume normal life because I feel I’m merely existing at the minute, was wondering if this is normal ?

[clivealive Forum Support]

Hi Amth

It is also important that your Folate level is monitored as this is essential to process the B12 you are having injected.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body .

Has your doctor given you a prescription?

I'm not a medically trained person but I've had P.A. for over 45 years and I wish you well.

[Amth in reply to clivealive]

Thank you and I can relate to the tingling in my feet and fingers in fact my fingers go white sometimes and look like a dead persons fingers wonder if that is connected? Yes I got a prescription for folic acid and started them today, here’s hoping, thank you for your reply

[Sleepybunny]

Hi,

Are you in UK? I'm asking because patterns of B12 treatment vary from country to country.

Do you have neuro symptoms?

Tingling would usually be considered to be neurological.

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

In UK, people with B12 deficiency with neuro symptoms are supposed to have a B12 loading jab every other day for as long as symptoms continue to get better (could mean loading jabs for weeks even months) . After loading jabs it's a jab every 2 months.

How often do you get B12 injections?

UK B12 treatment info

BSH Cobalamin and Folate Guidelines, about a quarter through guidelines.

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

BNF Chapter 9 Section 1.2

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

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

Blood tests

"sent me for more blood tests, I received a telephone call saying I needed folic acid"

I learnt from my experiences to always get copies of my blood test results after being told everything was normal and then finding abnormal/borderline results on copies.

In relation to B12, I get copies of B12, folate, ferritin and full blood count (FBC).

Access to medical records (England)

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

england.nhs.uk/contact-us/p...

nhs.uk/chq/Pages/2635.aspx?...

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and Vitamin 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 book about B12 deficiency with lots of case studies.

I am not medically trained.

[Amth]

Hi Bunny, yes I have many of those symptoms but did not connect them with b12 to be honest nothing was explained to me about it just said “your B12 is low gave me tablets had a blood test few months later and was still low so started me on injections I have one every 3 months and to be honest don’t feel any different afterwards, this last time I went to the doctors because I felt really sick and couldn’t breathe, he was in the company of a trainee Doc and I accused him of being patronising toward me after he asked me did I want him to get me an ambulance, the week later I went for my injection and he asked me had I been for ecg, well I went crazy then started crying and told him how he made me feel, he wanted to give me anti depressants which I have always been reluctant to start, gave me a prescription for them but told me to attend for blood test, then just last night the surgery “receptionist” called me to say to collect another prescription and that my folic was low, that’s all I know until I can get an appointment 🙄😔

[Amth]

And yes sorry after that rant I’m in Liverpool

[Sleepybunny]

Hi again,

I've assumed you're in UK.

"injections I have one every 3 months"

"yes I have many of those symptoms"

Has GP explained why you are not on neurological treatment regime for B12 deficiency?

Untreated or under treated B12 deficiency can lead to further neuro problems.

What does GP think caused your original B12 deficiency?

Do you have a PA (Pernicious Anaemia) diagnosis?

If yes to PA or if you suspect PA is a possibility, might be worth joining PAS (Pernicious Anaemia Society).

pernicious-anaemia-society....

PAS tel no [phone] answerphone

They can sometimes intervene on behalf of PAS members. PAS members can access details of PAS support groups. There are several in UK.

pernicious-anaemia-society....

B12 blogs

Martyn Hooper's blog about PA may have stories that are relevant to you.

martynhooper.com/

Also an interesting blog about B12 deficiency on "B12 Deficiency Info" website.

b12deficiency.info/

Risk factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Link about writing letters to GP about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 is about under treatment of B12 deficiency with neuro symptoms.

[Amth]

Bunny, I don’t know what my diagnosis is everything I typed above is EVERYTHING I have been told I have learnt more from this forum and I don’t know if I should be worried or not after my breakdown in the surgery last time it seems that my problem has only been discussed with me through a receptionist...

I think what I’m asking is does it sound like I have pernicious anaemia this is disgraceful treatment in my opinion I have been crying to the nurse for the past 12 months feeling so low, getting referred to ent for dizziness only to be told my ears fine

I’m just at a loss as to what to do next

[Sleepybunny in reply to Amth]

Hi Amth,

"does it sound like I have pernicious anaemia"

I'd suggest talking to PAS. Contact details in post above. They should be able to point you to helpful info on PA.

You mention Liverpool. There is a PAS support group in North Wales. You would need to be a PAS member to access contact details.

pernicious-anaemia-society....

Not everyone in PAS has a confimed diagnosis of PA partly due to difficulty in getting a diagnosis.

As tzracer says you are entitled to ask for copies of results. You may need to write a formal signed request for them. Some surgeries have online access to a summary of results/records but this is only a summary. Only reason for GP to refuse is if they feel giving out results could cause a patient harm. There may be a charge per sheet. I used to pay 50p -£1 per sheet. I think maximum charge is £10. Patients can get a complete set of medical records for £50 in UK.

Access to medical records (England)

Links in post above.

Link about what to do next if B12 deficiency is suspected

b12deficiency.info/what-to-...

Blood tests

In relation to B12, I look at B12, folate, ferritin, full blood count (FBC).

Some forum members post blood results on forum. Anyone who does this should take care that there is no personal info on show.

Blood test links

b12deficiency.info/b12-test...

patient.info/doctor/macrocy...

labtestsonline.org.uk/under...

patient.info/doctor/folate-...

As you are probably starting to realise B12 deficiency is not always as well understood as it could be by some doctors so it can be helpful to do some homework on B12 deficiency.

I gave a copy of the following to my GPs. However some GPs may not read extra info from patients.

1) A copy of "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

2) A copy of BSH Cobalamin and Folate Guidelines

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

3) A copy of PAS Symptoms Checklist with all my symptoms ticked plus I added others not on list.

pernicious-anaemia-society.... See Checklist PDF on right of page.

Unhappy with treatment?

Link about writing letters to GP about B12

b12deficiency.info/b12-writ...

CAB NHS complaints

citizensadvice.org.uk/health/

HDA patient care trust

hdapatientcaretrust.com/

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

Some forum members seek private treatment but this is no guarantee of a better experience.

[tzracer]

Hi, you are in the right place for help, you need to get print outs of all your blood test results from the surgery

You are entitled to them by law.

Post the results and the ranges as well. Doctors are in the habit of using the word 'normal' when you are in range. You can be feeling really unwell at the lower end of the range and not know.

In relation to the tiredness have you had any thyroid blood tests?

If you have post them on the thyroid UK forum for advice.

Maybe see a different doctor at the surgery, your current one isn't up to the job.

[Marz in reply to tzracer]

Like you I too was thinking Thyroid as Low thyroid goes hand in hand with LOW B12. So Amth also have Ferritin and VitD tested as low Iron can be the cause of breathlessness as well as Low B12 ....

thyroiduk.org.uk/tuk/about_...

The above link will take you to the Signs and Symptoms of Hypothyroidism - you do not need them all

I have Hashimotos and a B12 issue along with Crohns - so not a medic

[Mthfr]

Folinic Acid, it's B9.

My daughter and I are both using B12 and B9, the improvement is magnificent.

[JAMV in reply to Mthfr]

May I know the dose of B9? What forms of supplement do you take? Oral?

[Drumstix]

Amth your situation sounds awful.

You are definitely in the the right place on here and I would encourage you to join PAS if you haven't already, as there is a wealth of help, advice and also local groups who are fantastic.

Unfortunately most of the medical profession are very ignorant and also arrogant about B12 deficiency. It is not even on their radar. Your GP sounds appalling and very rude. Personally if that were me I would change and have a fresh start with a new surgery.

Your best bet is to do research yourself, through everything Sleepybunny attached for you and do your best to get your own head into the issues. I know that can be really hard when you're so low and also exhausted. Do you have brain fog? That is also neuro and commonly caused by B12.

You are within your rights also to ask to see a haematologist who may help you and know a bit more. Whatever the cause of your known B12 deficiency, the outcome is the same. Fact is you need B12 and have been massively under treated. Once the B12 is addressed you can then look at your remaining symptoms to find out what else is amiss. Unfortunately B12 deficiency all to often goes hand in hand with other autoimmune disorders.

As the others have said, it's really important to get printouts of blood tests, or at least make a note of the actual figures.

I highly recommend also keeping a diary of symptoms. This is evidence and you can present it to any medic. It is most useful to be able to say what happened and when, or when new symptoms started, or how well you clinically respond to treatments.

Unfortunately you have to fight your own corner, but everyone on here will offer as much support and good advice as possible so don't lose heart. You can get much better care than what you have had so far.

I want to slap your GP!!!!!

Good luck and keep us posted with how you go,

Drumstix 😃

Ps. I am not a medic, just another person battling with B12 def and really poor treatment.

[KimberinUS]

Please get your test results!!! Please post your levels with ranges here and we will help you be more informed so you can have an informed conversation with your doctor.

If a doctor asked me if i needed an ambulance, well... he might have needed an ambulance. I honestly thought i had dementia when i had low b12. I couldnt concentrate and memory was GONE! And because of that i was VERY irritable and easily provoked to tears.

If they felt like we do for 1 day, they would never be condesending again.

Antidepressants wont fix a b12, folate or iron deficiency!!!

You are in the right place. We will help you.

Hugs for you.

[Cherylclaire Forum Support]

Hi Amth -

Like you, I was told nothing except that I had a low B12 level (February 2016) and needed 6 injections within a month. It was the nurse who told me I would then need 1 every 3 months, probably for life.... ! -That's when I thought " better look this up, it's starting to sound serious " and found out about B12 deficiency through Martyn Hooper's book, the Pernicious Anaemia Society and this forum.

An injection every 3 months turned out to be nowhere near enough for me, and I rapidly got worse. Yes, I cried and shouted at the GP and the nurses: nothing personal, I was as likely to shout at the chemist, librarians, people on the train, friends and family. I was offered antidepressants, but refused them and kept on insisting this was NOT depression. Just part of huge mood swings, fear and confusion due to an inability to understand what people were saying to me. People started to be such hard work for me that the only respite was going on long walks alone and just living in the moment, not thinking of anything . I read all of the research and information papers that I could, but would forget every word and could never find the relevant paper at my appointments anyway.

My GP has worked hard since then and I have been sent to a haematologist, gastroenterologists, bowel people (what are they called ?), a dietician, and a neurologist. Even when I was getting 2 injections a week, I was still not improving (or at least not fast enough) so this was stopped after 6 months and I was put on 1 injection a month and gradually got worse again. The haematologist decided that my GP had wrongly diagnosed me as having functional B12 deficiency- and told her to halve my injections to 1 every 2 months. At this point, I had no other option but to self inject.

Finally I'm getting better with an injection every other day, and have had discussions about getting back to work in January, after 15 months off sick. My GP and nurse know what I'm doing and know it's working. I'm still improving so will continue. With or without any specific diagnosis.

There is hope, but not without the support of people here, not without a lot of reading research, not without a fight, not without a good GP, and not without an unwavering belief, no matter what anyone else says, that this is all just about a vitamin.

Look at the list of symptoms, especially those compiled by people who are B12 deficient themselves: you will know if you recognise yourself. Convincing others -that's the hard part.

Exhaustion, dizziness, tingling hands and feet- all familiar to me. Breathlessness- not so much, but have a read of Tracey Witty's recent blog about her experience on B12deficiency.org- I think it was Sleepybunny who brought it to our attention.

Get a friend or partner to go with you when you go to the GP- someone who is willing to read a bit about B12 deficiency and so can support you if you start getting too upset or angry. At least a witness. Keep a diary of symptoms, or a chart. When you start getting improvements (and you will), this will help you recognise that and spur you on. Some of the consultants photocopied my symptoms lists, so they could also be a useful reference to others.

Get blood tests etc mentioned above done, get results given to you, post results with ranges on here. Its a good start in getting the help you need from people you can trust.

Best of luck, Anne.

[Amth]

Thank you all so much, I’m sure by the sounds of it you have all been a help to one another, I don’t know if I have pernicious anaemia I have just been on the phone to my surgery asking for a print out and was questioned why.. yes unbelievable!

Anyway will pick it up after school run tomorrow and post them, for so long I have avoided attending my docs except for injection simply because I dreaded them asking me how did I find the anti depressants and was feeling I was wasting their time for not taking them.

Apart from the tiredness which is constant I read over and over the amount of people who have described a brain fog, what an exact way to describe this heavy headedness sometimes feel I should write things down before I go to the kitchen because I forgot what I was getting,

The embarrassing thing is I am actually an elected member (councillor) so please god when I get the energy I will be straight to our adult social care member and see what can be done, just right now all I can do is answer emails and phone calls but be certain to deal with them straight away otherwise I may forget.

Also NHS England will be contacted

[Foggyme Administrator in reply to Amth]

Hi Amth. Lots of really good advice already given by other forum members, so just a quick comment...

There are many potential causes of B12 deficiency, pernicious anaemia being only one. The treatment for pernicious anaemia is treatment for the B12 deficiency it causes, so the treatment for B12 deficiency is the same as the treatment for pernicious anaemia...B12 injections.

Why am I saying this. Because some GP's refuse B12 injections on the basis that PA has been ruled out (by a negative IF antibodies test). Two problems with this a) B12 deficiency can be caused by something other than PA and b) 40%-60% of those with PA test negative for IF antibodies - so a negative IF test does not rule out PA (there is such a thing as antibody negative PA - though many GP's have not heard of this - see diagnostic flowchart in the BSH guidelines that Sleepybunny left for you).

About your low folate - B12 and folate work together so if you are deficient in folate, your body will not be able to utilise vitamin B12 properly. Also - the symptoms of folate deficiency are similar to the symptoms of B12 deficiency, so folic acid supplements may improve your symptoms. It is usual for GP's to prescribe 5mg of folic acid daily for three/four months and then re-test folate levels and adjust the dose accordingly.

As others have said, there is a much more intensive regime of injections for those with neurological symtpoms (after the loading doses, every other day until no further improvement- sometimes for many months). If you did not receive this, there has been a 'missed step' in your treatment and it would be well worth gathering information about this and writing to your GP, with evidence, and asking for your injections to be given in accordance with this regime (as per BSH and BNF treatment and prescribing guidelines, respectively).

I know you have some links already but I'm going to paste in a few more (sorry, don't have time to sort through and see what you already have). They're annotated, so you'll be able to spot what may be relevant to you, quite easily (look in particular for BSH guidelines, BNF guidelines, Anything to do with neurological symptoms etc.).

Here's the links:

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

(BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

pernicious-anaemia-society.... (PAS Symptom Checklist)

stichtingb12tekort.nl/weten... (BSH B12 Deficiency / PA Diagnostic Flowchart)

onlinelibrary.wiley.com/doi... in Haematology (BSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)

onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord – Immediate Treatment with B12 Injections)

stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)

stichtingb12tekort.nl/weten... (Testing B12 During Treatment)

stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to Know Before Seeing GP)

stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)

stichtingb12tekort.nl/weten.... (B12 Deficiency and Intrinsic Factor – Can Be Negative and Still Have PA)

stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

bloodjournal.org/content/bl... (Haematologist B12 Treatment Review March 2017 – Includes Advice No Reason to Advise Against Self-Injection/More Frequent B12 Injections)

stichtingb12tekort.nl/weten... (B12 Deficiency and Neuropsychiatric Symptoms)

gov.uk/drug-safety-update/n... (Low B12 - Nitrous Oxide Contraindications)

ncbi.nlm.nih.gov/books/NBK2... (Gastric Autoimmunity: Heliobactor Pylori)

Your GP sounds dreadful (to,put it mildly) and I'm so sorry that you're being treated (or not treated) like this.

Are you able to change to another surgery (though there's no guarantee that a new GP would know more about B12 deficiency - but common decency and a willingness to learn would go a long way, for a start 😀).

Anyway, very best of luck, post again if you need more help, and let us know how it goes.

👍

P.s many here (as you may have spotted) are forced to turn to self-injection when (if) all else with GP fails. So, if this is a route that you decide to go down, then we can offer advice about where to safely buy B12 for SI, etc. 👍

[Gcart]

I am appalled and saddened by these posts. What on earth is happening to the 'care' system ?

[Amth]

Ok I finally got the strength to collect my print out but to be honest it might as well be in Japanese I have no clue whatsoever 😩

Should I have started a new message ?