B12: Hi, Could anyone help me? I’ve had... - Pernicious Anaemi...

Pernicious Anaemia Society

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B12

AMR930
AMR930

Hi,

Could anyone help me? I’ve had a previous B12 deficiency with symptoms, I went on the jab for 2 years and my symptoms dissipated. Shortly after coming off it my symptoms started again. I’ve had numerous blood work done and my GP states my B12 and folate is normal (I live in the UK) - I’m currently at my wits end with my symptoms as they’re increasingly getting worse.

My last test results came back with -

B12 - 214 ng/L

Folate - 4.3 ug/L

Can anyone make sense of these?

44 Replies
oldestnewest

It is possible to have a normal Pernicious Anaemia B12 reading and have a deficiency . It is known as a FUNCTIONAL B12 deficiency . Do ask your doctor ro consider this possibility , because your symptoms are returning , so you need the B12 injections ASAP . Failing that , I would self-inject , as many of us on this forum have to do, when our symptoms return before the next injection .

I agree with Wedgewood.

Your b12 level is pretty low anyhow but you know the answer.

B12 sorted your symptoms .

So get back on it asap.

What was the range for the B12 result? 214 ng/L will probably be fairly close to the bottom of the range.

Download this - onlinelibrary.wiley.com/doi... - and highlight the very first point in the key recommendations.

You had symptoms of a B12 deficiency. You had B12 injections. The symptoms went away. Now you have the same symptoms.

Only an idiot wouldn't think repeating the same treatment was a good idea.

Hi guys, I’ve just been told my latest results from the ones above.

187 for B12 and 3.2 for folate.

Nackapan
Nackapan in reply to AMR930

So youn need both treating but b12 first

I’ve requested a telephone call with my GP on Friday but after over a year of them stating my blood results are normal when they clearly aren’t I don’t hold much hope. I’m unsure how to broach the subject & make sure I don’t get fobbed off?

Hi,

Sorry to read that you're having a hard time.

"Shortly after coming off it my symptoms started again."

Did the GP stop your injections and if they did, what reason did they give for stopping them?

Do you have a diagnosis of pernicious anaemia (PA)?

If you were diagnosed with PA in the past, treatment is for life.

"a year of them stating my blood results are normal when they clearly aren’t I don’t hold much hope"

May be more effective to put your concerns into a letter to GP. See link below.

In UK, letters to Gps are supposed to be filed with medical notes so hopefully harder to ignore. Letters give a paper trail which could be useful if there is a need for formal complaint in future. Keep copies of any letters sent or received.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 in above link is about being under treated for B12 deficiency with neurological symptoms.

Point 5 in above link is about being symptomatic for B12 deficiency with an in range B12 result.

CAB NHS Complaints

citizensadvice.org.uk/healt...

May be worth talking to local MP/devolved representatives if struggling to get appropriate treatment.

Have you considered joining PAS as they can offer info and support?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

I suggest you read the documents below before you next speak to GP.

BSH Cobalamin and Folate Guidelines

Cobalamin is the scientific name for B12.

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

BNF Hydroxycobalamin

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

BNF Folic Acid

bnf.nice.org.uk/drug/folic-...

Local Guidelines

Your CCG (Clinical Commisioning Group) or Health Board will have local guidelines on treatment and diagnosis of B12 deficiency. Try to track these down and compare them with BSH and BNF links.

Useful B12 book

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). BNF treatment info in book is out of date, see BNF link about Hydroxycobalamin.

"at my wits end with my symptoms as they’re increasingly getting worse"

Symptoms Diary

If you're able to, might be worth keeping a symptoms diary which tracks how your symptoms change over time and if and when any treatment is given. It could be useful evidence of improvement or deterioration in symptoms to show GP or specialist doctor. You could include blood results and if you notice a drop or rise in results.

Do you have any neurological symptoms?

Does your GP have a list of all your symptoms especially any neuro symptoms?

If GP is reluctant to resume B12 injections you could mention consequences of being untreated or under treated in any letter or conversation.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

Lots of B12 info in my replies on the the thread below eg symptoms of B12 deficiency, causes of B12 deficiency, B12 websites, B12 articles/documents and a few hints about dealing with unhelpful GPs.

healthunlocked.com/pasoc/po...

I left a detailed reply about impact of pandemic on B12 treatment in UK in next link which might be of interest if you're UK based.

healthunlocked.com/pasoc/po.....

I am not medically trained.

Worth looking at the pinned posts on this forum.

AMR930
AMR930 in reply to Sleepybunny

Thank you so much! So much useful advice.

My GP didn’t give any reason for taking me off the B12, she took me off them shortly after filing a complaint against her. Two months after this, I went to the hospital and my haematologist took bloods which stated I was B12 deficient and needed treatment (This was sent to my GP in letter form). My GP then prescribed me B12 in tablet form when it clearly stated on my notes that I couldn’t absorb B12 through my diet/supplements hence why I was originally on the B12 jab. I rang haematology whom told me they advised my GP I should be on injections every three months - My GP then wrote a long winded letter to my haematologist listing reasons why I should not have B12 injections which resulted in me not having them. I then decided to file another complaint about this GP to which my complaint was ignored so I escalated it to NHS England, the GP surgery denied all wrong doing and sent me a letter with a 7 day notice to find a new surgery.

I then joined a new surgery, recently had my bloods taken and my B12 levels were quite a bit lower from the results prior (4 months) from 214, to 187 but when I rang up for my results the receptionist said no action was needed and results were normal - I believe my new GP surgery are basing their opinions/diagnosis on the notes from my old GP surgery which is unfair.

18 months in, I’m having neurological symptoms & classic symptoms of B12 deficiency - The same as before I was originally placed on B12 injections. The GP surgery have proof of this as I had nerve tests & blood tests which lead to my original diagnosis, however I just feel I’m hitting my head against a brick wall.

It’s getting to the point where I feel I’m being treated like a hypochondriac when in actuality I’m living off ibuprofen because I can’t cope with the spasms/nerve pain.

Am I being irrational? My B12 results are 187, that is a low reading isn’t it?

Joboo124
Joboo124 in reply to AMR930

Hi I am in the same position. My GP told me for b12 to be classed as low it has to be under 150. My injections have stopped because i my levels are above this but they won’t tell me what the number actually is. So frustrating. Best of luck with getting what you need.

Showgem
Showgem in reply to Joboo124

If you’re in the U.K. the surgery has to give you this information by law and a print out of the results if you request one.

fbirder
fbirder in reply to AMR930

187 may be low, it may not be low. It's impossible to tell without the units and the range.

Sleepybunny
Sleepybunny in reply to AMR930

You've had a hard time which sadly many of us on here can probably relate to.

Link about when GPs can remove patients from their list

bma.org.uk/advice-and-suppo...

Link about Complaints about GPs

which.co.uk/consumer-rights...

"The GP surgery have proof of this as I had nerve tests & blood tests which lead to my original diagnosis"

I suggest that you think about getting copies of or access to all your test results or even a complete set of your medical notes especially proof of your original diagnosis.

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

You can hopefully see what your old GP wrote about you.

Mistakes in Medical Records

ico.org.uk/your-data-matter...

pulsetoday.co.uk/news/polit...

"My GP then wrote a long winded letter to my haematologist "

Have you considered writing a polite, brief letter to your haematologist and possibly copied to GP? Keep a copy of any letter sent.

You could mention concerns over deterioration, a list of neuro symptoms, below range B12 result and length of time without treatment.

There is an increased risk of permanent neuro damage if untreated or under treated including possible damage to spinal cord SACD (sub acute combined degeneration of the spinal cord). Might be worth mentioning any concerns about SACD in any letter.

PAS article about SACD, sub acute combined degeneration of the spinal cord, access to full article for PAS members only. Non members can access a summary of article.

pernicious-anaemia-society....

Neurologist

Perhaps you could make a polite request for a referral to a neurologist?

Link about letter to GP if under treated for B12 deficiency with neuro symptoms

b12deficiency.info/b12-writ...

The link above has letter templates, people can base own letters on.

Have you had tests for PA?

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

Possible to have PA with a negative result in IFA or PCA test.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

If there is any possibility that you have PA, I suggest joining PAS and talking to PAS helpline before your next appt.

PAS membership

pernicious-anaemia-society....

PAS contact details

pernicious-anaemia-society....

Have you ever been tested for coeliac disease?

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

NICE guidelines Coeliac Disease

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

Tested for H Pylori infection?

H Pylori infection

patient.info/digestive-heal...

NICE guidelines H pylori

pathways.nice.org.uk/pathwa...

Click on blue boxes in flowchart for more info.

Any exposure to nitrous oxide?

Nitrous Oxide

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

NICE guidelines Nitrous Oxide ( see side effects section)

bnf.nice.org.uk/drug/nitrou...

Any chance of internal parasites eg fish tapeworm?

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Peripheral neuropathy is a neuro symptom that most GPs will know can be associated with B12 deficiency so worth mentioning any symptoms suggestive of it.

nhs.uk/conditions/periphera...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

AMR930
AMR930 in reply to Sleepybunny

Thank you, I appreciate everyone’s advice and help so much! It’s been so disheartening to know that I’ve been cast aside despite my ongoing symptoms but all this information has definitely given me an idea of what I need to broach with my GP tomorrow. Hopefully they’ll listen without shutting my down and stating that 187 is a normal result.

Sleepybunny
Sleepybunny in reply to AMR930

"Hopefully they’ll listen without shutting my down"

I have in past written a brief polite letter outlining concerns to doctors after an unhelpful appt. I always tried to include evidence eg symptoms, test results, extracts from UK documents, family medical history that backed up what I wanted to say.

Is there a family history of PA, Coeliac disease, other gut conditions, auto immune conditions?

If there is does your GP know?

A history of auto immune conditions in the family increases the risk of developing one. Already having an auto immune condition increases the chance of developing another auto immune condition.

PA and Coeliac disease are auto immune conditions that can lead to b12 deficiency.

Quite a few members of this forum also have Thyroid problems and/or other auto immune conditions.

Thyroid

Suggest you put any thyroid results you have on Thyroid UK forum on HU.

Some of the symptoms of B12 deficiency overlap with those of thyroid problems.

In UK, GPs often only test TSH but this will not give a full picture of thyroid function.

There are other thyroid tests they can do.

Thyroid tests

thyroiduk.org/getting-a-dia...

Gut Symptoms

Do you have any gut symptoms eg gastritis, IBS, constipation etc?

Have you been referred to a gastro enterologist if gut symptoms present?

Some people on this forum have got a diagnosis of PA or coeliac disease or other gut condition that could affect absorption of B12 from a gastro specialist.

AMR930
AMR930 in reply to Sleepybunny

Just had the phone call with my GP and she stated they cannot do anything until my levels drop below 180 and I’m currently at 187. She’s confirming with haematology right now and going to ring me back.

Sleepybunny
Sleepybunny in reply to AMR930

Hi,

Sorry to read about your phone call.

You could ask her what treatment guidelines the surgery are using and ask surgery for a copy or link to them then get hold of a copy for yourself.

If you are happy for people to know which county or region of the UK you are in, people could help you track down the relevant guidelines. However there may be risks to your privacy if you give this information.

I hope you are not in Gloucestershire which has a bad reputation for its treatment of B12 deficiency.

Might also be worth posting your update message above on a new thread as more people will see it. You could include a link to this thread.

If all else fails, some on the forum resort to self treatment. I did but only when I had exhausted every possibility of getting NHS treatment.

Options

1)Think about putting your concerns into a letter. See letter writing link up page.

It is 200-900 and my levels are at 187.

If you write, I suggest you mention in writing that your latest result is below range and give the actual numbers. You could mention neuro symptoms especially any spinal symptoms, any concerns about risk of SACD ( sub acute combined degeneration of the spinal cord and symptoms suggestive of peripheral neuropathy eg tingling, pins and needles, numbness, electric shock sensations, mention balance problems etc.

PAS leaflet about SACD

pernicious-anaemia-society....

Might also be worth including relevant quotes in any letter from BSH Cobalamin and Folate Guidelines. BSH guidelines suggests treating people wth levels under 200 ng/L and anyone who is symptomatic with an in range result.

BSH Cobalamin and Folate Guidelines

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

2) Consider joining PAS and contact their helpline to see if they can suggest useful info to pass to GP .

3) Talk to your MP/devolved representative (bit of a long shot) to raise awareness of treatment difficulties for patients with b12 deficiency

4) Consider going to private GP, private specialist but don't expect wonders...there's a lot of ignorance about B12 deficiency among private doctors.

5) If you have gut/neuro symptoms push for a referral to neurologist and gastro enterologist as you may be lucky and get one who understands B12 deficiency and may write to your GP suggesting treatment is restarted.

6) Help and support on B12 Deficiency Info website and B12d.org

B12 Deficiency Info website

b12deficiency.info/

B12d.org holds support meetings near Durham, UK

Has held online Zoom meetings during pandemic.

b12d.org/event

B12 article from Mayo Clinic in US

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency.

Article suggests ....

1) No proof that oral b12 is a good at treating B12 deficiency as B12 injections

2) Many current tests eg serum b12, active B12, MMA, Homocysteine, are not totally effective as diagnostic tests for B12 deficiency.

3) Successful treatment should not be stopped

AMR930
AMR930 in reply to Sleepybunny

I live in Lancashire, Nelson. I’m just so confused at this point - It’s really draining knowing that I’m not getting treated for something that I clearly have. The only treatment that made my symptoms dissipate was B12 injections.

Sleepybunny
Sleepybunny in reply to AMR930

I did find out that CCG for your area was in the process of drafting new guidelines for treatment of B12 deficiency in 2019 but not sure if this has been published.

If you can't track new guidelines down you could ask your MP to help you.

There are blog posts that mention your CCG on B12 deficiency Info website. The blog posts are critical of the B12 range the CCG was using at the time .

AMR930
AMR930 in reply to Sleepybunny

Thank you so much! Can anyone find anything that I can send my GP on Monday to finally sort this out? I’ve requested my first levels from diagnosis in 2016 from the hospital. I’m sure they were about the same as my current levels so I suppose that’s something?

Sleepybunny
Sleepybunny in reply to AMR930

"I’ve requested my first levels from diagnosis in 2016 from the hospital"

Can you find out if you have ever had an Intrinsic Factor Antibody test from GP surgery and hospital?

As well as B12 results from 2016, I suggest you get at least folate results, ferritin and any other iron results plus full blood count results.

You could also request copies of any letters the hospital sent to the GP. There should be at least a discharge letter.

It's possible that letters from hospital in 2016 could contain advice on how to treat you or recommendations about further tests.

"she stated they cannot do anything until my levels drop below 180 and I’m currently at 187"

This is not true in my opinion.

A GP is allowed to use their clinical judgement to prescribe off licence if they feel it is in the patient's best interests. See link below.

gmc-uk.org/ethical-guidance...

I'm guessing that GP does not want to deviate from the local guidelines for fear of being sanctioned in some way by surgery or CCG or perhaps because of financial pressures. Nurses' time to give injections is expensive. B12 ampoules are not.

"Can anyone find anything that I can send my GP on Monday to finally sort this out?"

It's possible that your GP may be willing to read following guidelines/leaflets/articles but I suspect some GPs may file a pile of photocopies in the bin or delete an email with links.

This is why I usually suggest writing a letter.

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 Hydroxycobalamin

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

NICE CKS guidance on B12 deficiency

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

BNF Folic Acid

bnf.nice.org.uk/drug/folic-...

Vital that any B12 deficiency is treated at same time as folate deficiency otherwise there is a risk of neurological problems.

There are useful leaflets/articles on PAS website that some PAS members print out and pass to GPs. You will need to be a PAS member to access some of them.

pernicious-anaemia-society....

My understanding is that letters to GP should be filed with a patient's medical notes and not thrown away. I used to put a request in letters to GP that a copy be filed with my notes to make extra sure.

I'm sure there is helpful info in letters link below.

b12deficiency.info/b12-writ...

Think about including a list of all your symptoms. Perhaps you could use list below and add any additional symptoms you have at bottom of list.

pernicious-anaemia-society....

Next link is from East Lancashire Medicines Management Board

elmmb.nhs.uk/elmmb-formular...

It is based on the BNF (British National Formulary). BNF is a book that all NHS doctors will have access to and gives details of recommended treatment for various conditions. BNF info is also available online.

If you join PAS you could probably speak to them on members helpline Sat morning.

PAS membership costs about £20 for a year's basic membership.

pernicious-anaemia-society....

One possible way to find the local guidelines on B12 deficiency would be to submit a freedom of information request to hospital trust, GP surgery.

elht.nhs.uk/about-us/freedo...

Might also be worth contacting person who runs B12 Deficiency Info website to ask if she knows what the guidelines for your CCG are.

B12 Deficiency Info website

b12deficiency.info/

AMR930
AMR930 in reply to Sleepybunny

Thank you so much, I’m going to draft a letter to my GP first thing Monday morning. My folate levels are currently 3.7 contrary to what I originally was told.

As stated previously, my last GP surgery chucked me off the patient list when they found out I’d complained to NHS England so I’m wary of kicking up too much of a fuss with my current surgery, although I do need this sorting ASAP.

Espeegee
Espeegee in reply to AMR930

You should seriously consider complaining to the GMC. I am absolutely staggered that a GP should behave in this way to a patient with a bona fide diagnosis that requires specific treatment. Here's a link gmc-uk.org/about/get-involv...

Espeegee
Espeegee in reply to Espeegee

You should also contact your local Clinical Commissioning Group and raise a complaint there also - eastlancsccg.nhs.uk/contact-us

AMR930
AMR930 in reply to Espeegee

Thank you! I’m just hoping someone can help me soon as it’s so frustrating. Currently got a mouth full of ulcers and got deep heat on my feet & took ibuprofen cause of the pain in my feet. It’s like their constantly cramping, dull stabbing pain.

AMR930
AMR930 in reply to Sleepybunny

Also, will I struggle to get injections with the current lockdown situation? Or does this depend on the GP surgery?

Sleepybunny
Sleepybunny in reply to AMR930

If you struggle to get injections due to the affect of pandemic, please come back to the forum.

WHO (World Health Organisation) has declared that B12 injections are an essential medicine during pandemic.

Link from B12 Deficiency Info website about Covid

b12deficiency.info/covid-19/

There are several PAS news items about impact of Covid on B12 treatment

pernicious-anaemia-society....

Your levels are very low, you will have to self inject along with taking folic acid tablets, but do not forget to check complete iron panel and ferritin levels. Iron deficiency and b12 deficiency have overlapping symptoms. It is easy to mask or miss each other. I got iron deficiency after my cobalamin treatment. Just keep an eye on iron, ferritin levels. Also vit d. Aim for b12 level above 500

Thank you, it’s just all very confusing! I know I’m deficient and the fact I experienced no symptoms after originally going on the jab proves that but getting my GP to understand that is proving extremely difficult.

Cherylclaire
CherylclaireForum Support in reply to AMR930

My B12 was originally tested at the start of 2016:

196 ng/L (range: 197 - 771 ng/L)

Injections were started- loading dose of 6 over a month, then every 3 months.

My B12 was checked again -a few hours after my first maintenance injection - and was over 2,000 ng/L. Two months later, it was checked again: 860 ng/L.

By then I felt like I was dying and no-one was noticing. I was wrong: my GP was aware that something wasn't right.

Two months after that, in desperation, I wrote my GP a letter. She told me that she wanted to start reloading at 3 injections a week, thereafter every 2 months. I had more blood tests, this time before my injection: B12 was over 2000 ng/L again, but MMA was also raised. It shouldn't have been.

She said my B12 was not working, that I had Functional B12 deficiency, which was confirmed by the lab doing the test on MMA. I was to continue on reloading injections and later 1 injection every month !

She wrote "serious B12 deficiency" on my doctor's certificate.

I also needed 3 months of ferritin and folate- they weren't below range, but needed to be higher to stop my hair falling out, my gums bleeding etc. Lowest folate level I had was 5.5 ug/L, lowest ferritin 36 ug/L. They took a couple of years in all to get to better levels and stay there. I got vitamin D on prescription because osteoporosis of the spine was found -lowest vitamin D level I ever had was 74 nmol/L.

As you can see, on paper, none of my levels were particularly dramatic.

I finally felt my B12 injection for the first time just before Christmas, three months after the reloading injections started. It didn't hurt at all - I just didn't have to ask if it had been done yet !

I cannot list all my symptoms, there's not room. I don't need to tell you how frightened I was; you've been there too. I really wish you had a GP like mine: perceptive, tenacious, experienced and, most importantly, caring.

NOT necessary to find a B12 expert. You can learn enough yourself by gradually working your way through Sleepybunny 's links, if you feel well enough, or read Martyn Hooper's book, or just ask on here. Plenty of support, advice and genuine kindness here.

No GP should be comfortable watching you going out of range. Now that's irrational.

stichtingb12tekort.nl/engli...

Take this in. Pertinent information is between #4 and 5.

There was no reason to take you off the shots. We would all be off if we were retested. Because everyone has elevated b12 during treatment.

It is all so crazy.

Not to mention your b12 decreased without the shots, on that second reading.

Do you have your original reading where you were first diagnosed? That is your baseline.

Here's another, a succinct article about retesting and its repercussions -

stichtingb12tekort.nl/engli...

I am sorry you have to deal with this nonsense. My sister had a similar situation. She would be given shots, retested, taken off them, low again, back on - this whole stupid sequence for years. While she suffered with symptoms.

When my GP made several erroneous statements very early on, I remember looking at her and thinking this isn't her health - it is mine. I was self-injecting very early on and haven't looked back (although I just came home from my monthly shot at the office, I still make them pay for one!)

I’m honestly dreading my telephone appointment tomorrow because I know full well that they’ll fob me off and tell me I am not deficient - I’m so frustrated. I don’t want to be rude with the GP, however I want her to understand how this has impacted on my health.

Also, I’ve just checked my range - It is 200-900 and my levels are at 187.

Cherylclaire
CherylclaireForum Support in reply to AMR930

- and I was treated immediately, at a level just 1 ng/L below local range.

Which is what is supposed to happen.

AMR930
AMR930 in reply to Cherylclaire

Update - I spoke to the doctor and she said she would check my haematology results despite me sending them directly via email and said she’d ring me back. After a few hours had passed I rang reception and they said that she’s waiting for my medical record from haematology to which I stated I’d already sent via email. They confirmed they had sent it to the GP but she still wanted the exact same document from haematology and it would be around a week before she contacts me back. (I’m clearly being fobbed off again).

Can anyone confirm if a third party can contact my surgery on my behalf and request that I have my B12 due to the low results etc? Any NHS organisation etc?

Cherylclaire
CherylclaireForum Support

I think Sleepybunny's suggestion of joining the Pernicious Anaemia Society is a good start- they may be able to help if you contact them. Worth asking.

Thank you.

Hi,

Blog post about your CCG from B12 Deficiency Info blog

b12deficiency.info/blog/201...

The B12 reference range quoted in blog post is not the same as the one you have given so I assume their guidelines have changed since 2014.

It's possible to leave comments under the blog posts on this website.

Also possible to leave comments under blog posts from Martyn Hooper's blog about PA and B12 deficiency.

martynhooper.com/

and under PAS news items

pernicious-anaemia-society....

AMR930
AMR930 in reply to Sleepybunny

Yes, it’s definitely changed. Question is, how do they diagnose individuals that clearly have a deficiency but levels are at lower end of normal?

AMR930
AMR930 in reply to Sleepybunny

Does this sound ok to send my GP?

Good afternoon Dr xxxxx,

I’ve sent the relevant information regarding previous test results from Haematology and also had Haematology send the results themselves from their lab. The results are as follows -

- B12 - 214 ng/L. 160-260 ng/L - Vitamin B12 (Cobalamin deficiency possible).

- Since then, my levels have declined significantly within a 6 month period from the recent blood tests conducted by your surgery (187 ng/L).

NHS website guidance -

- Vitamin B12 reference range in non-pregnant adult: 197-771ng/L.

- 150-197 ng/L - Treat with I.M. hydroxocobalamin immediately.

- If there is a suspicion of neurological symptoms start treatment whilst awaiting any additional results.

- Ongoing monitoring of vitamin B12 levels is not required for patients being treated with I.M. hydroxocobalamin.

Further to the above, I have retrieved my B12 results from my original diagnose as I knew the results would be a baseline. They are as follows -

As you can tell from my medical record I have been experiencing classic B12 symptoms now for around 18 months which are worsening over time due to receiving no treatment. As explained previously, the symptoms I am experiencing are identical to those I was experiencing prior to being diagnosed and treated with B12 injections. Again, my symptoms completely dissipate for a total of 24 months whilst receiving treatment then re-appeared shortly after stopping treatment.

My previous surgery concluded I would be in receipt of B12 jabs for life as it was non-dietary, then later discontinued treatment giving no explanation as to why they had done so. Upon symptoms re-appearing and numerous face to face appointments, it became quite apparent that they’d made a mistake and weren’t willing to be held liable for doing so - In the months that followed, I was continuously fobbed off with painkillers and sent on my way.

After another weekend of self medicating with ibuprofen due to the nerve pain, pins & needles, cramping etc I am growing deeply frustrated that I am still not receiving treatment as my levels are considered ‘normal’ despite NHS guidelines stating different. Furthermore, I’m worried that the longer this is left without treatment, that I run the risk of permanent nerve damage or permanent damage to my stomach from the ibuprofen.

I’m still unsure why there is still a question mark surrounding a B12 deficiency given my medical history, symptoms, dwindling B12 levels and the fact the B12 treatment was successful in relieving my symptoms. As you’re likely aware, I don’t reap any benefits from receiving treatment other than my symptoms dissipating.

I’d just like to add that I do not want this email to come across abrupt as this is not my intent but this is having a tremendous affect on my mental health as well as my physical health and I’m simply wanting to be given the adequate care I should of received 18 months ago from my previous surgery.

To conclude this email, I totally understand that the wrong doings of my previous surgery aren’t a reflection on this surgery - However, after seeking some medical advice I felt it would be beneficial to draft this email and provide some background given that the surgery hasn’t obtained all my medical records yet.

Kindest regards,

Admin Note: amended to remove names

Gambit62
Gambit62Administrator in reply to AMR930

Please note I have removed names from the above to protect individual privacy

Sleepybunny
Sleepybunny in reply to AMR930

Hi,

I suggest you don't include details in your post that might give away your identity or that of health professionals involved in your care. See pinned posts about forum rules.

I think would be good to try to make your letter shorter if possible and maybe remove comments that might be perceived as critical or negative relating to current GPs or previous GPs.

The shorter it is, the more likely your GP is to read it in my opinion.

You mention in your thread that you had a difficult experience with a GP in the past. It's possible that your old GP may have hinted to your current surgery that you are difficult to deal with so it might be best to try to appear as reasonable as possible.

Might be worth including a short quote or two from BNF and BSH links.

BNF Hydroxycobalamin

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

Summary of BSH Cobalamin and Folate Guidelines

pernicious-anaemia-society....

BSH Cobalamin and Folate Guidelines

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

"I have been experiencing classic B12 symptoms"

Perhaps a sentence that lists your classic symptoms especially any that indicate peripheral neuropathy and spinal symptoms?

Maybe a polite request for referral to a neurologist?

You might want to start a new thread with a draft of letter and ask for other comments from forum members but I recommend you remove any details that might identify you.

Maybe include a request to file a copy of letter with your medical notes.

Possible that PAS (Pernicious Anaemia Society) and B12 Deficiency Info website might be able to suggest info you could include.

AMR930
AMR930 in reply to Sleepybunny

Thank you. I appreciate this. I’ve decided to not include any info about my previous GP surgery and only bullet point my previous medical history, my test results, symptoms and info from the links you’ve provided.

Mine was 124 b12

And same folate as yours

I was and am having b12 inject

I also had folic acid to start with fir one month

Thought you might find this article interesting.

healthinsightuk.org/2016/10...

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