So frustrated I could cry: For the last... - Pernicious Anaemi...

Pernicious Anaemia Society
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So frustrated I could cry

Clarkie477
Clarkie477

For the last year I have suffered from numerous symptoms, including neurological (fuzzy, foggy head, pins and needles, stabbing pains, cold water feeling in my arms and legs) I became so frustrated at my GP surgery not getting anywhere that I payed for a private blood test. My folate and ActIve b12 came back 2.02 ug/L and 28.7 pmol/L respectively.

I took this to my GP and they did their own test as they didn’t recognise the Active B12 results. It came back at 178 pg/ml and she put me on cyanocobalamin supplements 50 mcg for 50 days as my pernicious anaemia test came back negative. I was having neurological symptoms at this time also. I knew they hadn’t worked as I was feeling even worse. She re-tested and came back at 180 pg/ml. They are refusing to give me a loading dose as my B12 isn’t low enough. This is despite me having neurological symptoms. I was in arguing with them today about it as I was at out of hours over the weekend and the doctor there was perplexed at why I hadn’t been given at least 3 loading doses. I brought this up with my GP and I was told I shouldn’t be listening to a doctor that has only met me once in his life. I am at my wits end as I received only 1 dose on Wednesday 12th 2020 and I’ve to wait another 3 months before the next one. I am in Glasgow, Scotland.

62 Replies
oldestnewest

I'm so sorry to hear this. Have you been referred to a neurologist?

They can help at times. The one I sad in the letter to Gp treat as according g to bnf guidelines for neurological symptoms.

On a recent post all the links are there to help you.

Write your symptoms down in s letter to Gp surgery asking them to adhere to bnf guidelines.

Ask them what's causing your symptoms thdn??

Sometimes letters have more clout.

Tou have proved toh are not absorbing the tablets .

Did you feel any benefit from 1 injection?

I tested negative for PA

I also had problems initially.

Did get loading doses.

Look at recent threads with the links. PAS can help if yoh join.

I hope things improve for you

Clarkie477
Clarkie477
in reply to Nackapan

Thanks for your reply. The out of hours doctor said I may need to see a neurologist but my own GP wasn’t interested. I will write a letter this afternoon and hand it in. I think I may have to change GP surgeries but I’m reading that this kind of attitude from doctors is widespread.

Nackapan
Nackapan
in reply to Clarkie477

It is. Are there any others doctors at tour surgery? I had to go through all 6!

Hope your letter helps.

Has the Gp done bloods for thyroid. Iron . Ferritin vitamin d ect? If not request thses on your letter.

Clarkie477
Clarkie477
in reply to Nackapan

Yes there are other doctors but these doctors don’t give me much faith. For example, I went in with an itchy sore mouth and cracked corners and was told to eat bland food and put Vaseline on the corners. This is a classic sign of B12 deficiency as you know and they didn’t pick it up.

I’ve had a full work up done through the private blood test. The only thing I’d say is my Ferritin and Transferrin are on the high end and my creatine and egfr are borderline so I’m keeping an eye on that.

Hi. I felt that I had to get in touch as I was exactly the same as you, hitting my head against a brick wall (I’m in Aberdeenshire) I eventually asked for the receptionist to pass a note to my GP letting her know that I was going to buy my own b12 and self inject. I wasn’t asking her permission, I only wanted her advice as to which type I bought as I knew there were 3 variations of B12, needless to say I started my loading doses the following week. 3 years on and I now have a folate deficiency, permanent numbness in hands and feet and crazy brain fog. Wish I had fought the surgery sooner as this has been ongoing for 10years plus for me.

This is my fear, that I may never get rid of my symptoms now. Have you been able to see a neurologist re your brain fog and numbness? Wishing you a less foggy day tomorrow. It is a horrible feeling.

Hi again. No I have been referred to a orthopaedic clinic, see why the weakness and numbness. Nerve test all proved fine, shocker... I now have to go back to orthopaedics for them to tell me they can find nothing wrong... I know this all stems from my b12. I know this because the symptoms worsen nearer the end of my 12 weeks waiting for the next injection. But no matter how much I tell them this they only wish to treat the symptoms, I don’t understand why I can’t have the injections 6/8 weekly. I have learned to live with the fog...I keep relentless lists lol and I use my Alexa like a back up memory, my kids and husband add things to her to remind me. My worst symptoms at the moment are vertigo like symptoms, but once again the gave me meds to treat vertigo rather than the injection! I have developed coeliac disease and I believe it’s as a direct result of the b12 deficit but again no one is listening. I’m fed up of fighting. But I hope I have a good day too x

That should have said I hope u have a good day 🙈

I have been on Stemetil for a while due to vertigo. I had no idea until today that it was a deficiency symptom, that and tinnitus. It makes me angry that they have no interest in finding out why these things are happening.

It is soul destroying.

Hopefully you find the strength to keep fighting xx

Same to u xx

Hi, I am exactly the same with Vertigo and Tinnitus. I have injections every 3 months at surgery. , and SI every month. I was also untreated for 10 years, so I think the damage has already begun. And hope over time for some improvement. The GP also offered me medication for the Vertigo, but I would not take it, as I knew it was B 12 related.

Good luck.

Nackapan
Nackapan
in reply to Craigellie

Bnf guidelines have changed. Insist on at least 8 weekly injections. Get them to read them online. I did.

hi i am in paisley scotland i think you need to fight your doctor i have a great doc at the moment hasn't always been like that though but she had me tested immediatey for celiac as she told me they go hand in hand with pa luckily i did not have it but i am off work at the moment with terrible back pain and have a lot of symptoms and i get 3 monthly injections i dont think i will ever feel well

I’ve been told I don’t have PA but now I’m wondering if I’m in the 50% misdiagnosed. I’ve had lots of gastro tests and they’ve told me I will probably need a few more. I ordered B12 online yesterday along with needles etc. I’m not sure if that’s an option for you to see if more doses make you feel better?

LWhelan
LWhelan
in reply to Craigellie

My GP in Aberdeen was also useless hence why I SI. I started to get other issues and only recently was referred to a rheumatologist at ARI who has been helpful and diagnosed a further two autoimmune diseases. She said b12 is an auto immune disease and this makes you more likely to get other autoimmune issues such as coeliac thus it may be helpful for you to ask for a referral to rheumatology.

Craigellie
Craigellie
in reply to LWhelan

I have already been referred, they told me nothing they could do for me, I wondered if I had lupus (my mum has that) but I don’t so I was discharged. No help at all. I have only been tested for coeliacs as I passed out in pain 2 weeks ago whilst in the surgery

LWhelan
LWhelan
in reply to Craigellie

That is so rubbish but unfortunately it seems to be that the medical profession really just don’t know how to handle autoimmune. Some days I literally hurt all over - I went gluten free a month ago and that has helped a little thus I’m looking at diet in general now.

Craigellie
Craigellie
in reply to LWhelan

It’s a constant battle that I can’t ever win unfortunately x

Hi Clarkie477,

Sorry to hear about your frustration, sadly so many of us experience similar issues.

Have you considered joining PAS (Pernicious Anaemia Society)?

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

There is a PAS support group in South Scotland.

Blog post about how PAS can support PAS members seeking PA diagnosis

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

A few years ago a petition about b12 deficiency went before the Scottish Parliament.

parliament.scot/GettingInvo...

"They are refusing to give me a loading dose as my B12 isn’t low enough. This is despite me having neurological symptoms."

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 in letters link is about under treatment of B12 deficiency with neurological symptoms present.

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

The link has letter templates that people can base their own letters to GP on.

CAB Advice Scotland NHS Complaints

citizensadvice.org.uk/scotl...

If you are not getting recommended level of treatment, your local MP will hopefully be interested in your story.

members.parliament.uk/

As NHS is a devolved issue in Scotland, I wondered if your MSP could be helpful?

parliament.scot/msps/curren...

BSH Cobalamin and Folate Guidelines (Perhaps your GP would like a copy?)

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK

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, in order to prevent neurological damage.

BNF

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

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

NICE CKS

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

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...

B12 book 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 show updated BNF info.

Useful B12 article from Mayo Clinic

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

Suggests

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

2)many current diagnostic tests eg serum b12, active B12, MMA, Homocysteine, are not totally reliable

3)successful B12 treatment should not be stopped

Help for GPs

1) PAS website has section for health professionals. It is free for them to join PAS as associate members.

pernicious-anaemia-society....

Perhaps your GP would be interested in joining?

2) PAS library section has many useful leaflets which PAS members can print off. Some on forum pass them onto their GPs.

pernicious-anaemia-society....

" An Update for Medical Professionals: Diagnosis and Treatment " is a useful PAS article which some forum members have passed to GPs.

I don't have time to write a longer reply but suggest you look at my detailed replies in this next link to another thread on the forum. It has links to other B12 books, B12 websites, UK B12 document/articles and other B12 info.

healthunlocked.com/pasoc/po...

Thyroid issues often seem to come with B12 deficiency. I suggest putting any thyroid results on the Thyroid UK forum on HU.

In UK, doctors often only test TSH which won't give a full picture of thyroid function.

I am not medically trained.

Thank you so much for all of that info. I joined PAS this afternoon. I was going to write a letter today but my brain fog has been awful so I will attempt it tomorrow.

I’m not sure if I have PA or just B12 deficiency. GP doesn’t really explain things well

My test came back negative but I’ve since read that it’s not an accurate test at all.

Blog post about how PAS can support PAS members seeking PA diagnosis

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

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.

Both these tests can be unreliable.

It is still 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.

Perhaps you can give your GP some information on Antibody Negative Pernicious Anaemia; see flowchart link in my other post.

Have you been tested for Coeliac disease?

NICE guidelines Coeliac disease suggest anyone with unexplained B12, folate or iron deficiency should be tested. Also anyone with a first degree relative with Coeliac.

Is there a family history of auto immune diseases?

If there is, does your GP know?

Having auto immune disease in the family can increase the chances of developing one. PA and Coeliac disease are auto immune conditions.

NICE guidelines Coeliac Disease

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

Coeliac Blood Tests

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

If you get tested, make sure

1) both first line tests are done

tTG IgA which tests for antibodies to gluten

Total IgA which tests which patients have IgA deficiency

Patients with IgA deficiency need alternative tests for Coeliac.

2) Hopefully GP will tell you to eat plenty of gluten in more than one meal per day for several weeks before blood is taken.

This increases the chance of a positive test result in people with Coeliac disease as it should ensure that there are lots of antibodies to gluten circulating in the blood.

Not eating enough gluten over the weeks before blood is tested could lead to a negative result in tTG IgA test even in someone who has Coeliac disease.

My personal experience was that GP surgery took the blood a few days after suggesting Coeliac disease was a possibility and I was not asked to spend several weeks eating lots of gluten beforehand. They also forgot to do the Total IgA test.

I don't think the result was reliable. In the end I went gluten free and all my IBS symptoms disappeared and I no longer had allergic skin reactions. I queried all this with my GPs but they didn't respond well to being challenged (politely ).

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

H Pylori infection?

patient.info/digestive-heal...

Exposure to Nitrous Oxide?

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

Any chance of internal parasites eg fish tapeworm? Do you ever eat raw fish eg sushi/smoked salmon? One potential sign of fish tapeworm infection is an increase in eosinophils, a type of white blood cell WBC. Eosinophil results can be found on Full Blood Count FBC results.

There are other parasites that can be associated with B12 deficiency in humans eg Giardia Lamblia, other types of tapeworms, pinworms etc

ncbi.nlm.nih.gov/pubmed/119...

If you've ever lived in an area where internal parasites are common may be worth mentioning this to GP.

Access to Blood test results (Scotland)

nhsinform.scot/care-support...

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...

Referrals

Have you requested referrals to any specialists?

I used to put referral requests into brief, polite letters to GP along with evidence eg symptoms, test results, extracts from UK documents etc that supported requests.

Although be warned that ignorance about B12 deficiency exists among some specialists. Be well prepared for any appointments.

As neuro symptoms present, have you requested a referral

1) to a neurologist?

If you see a neurologist, ask them to check your proprioception sense. Two tests that help to do this are Romberg test and walking heel to toe with eyes closed. Problems with proprioception are associated with B12 deficiency. Vital that these tests are only done by a doctor due to risk of loss of balance. If no tests are done with patient's eyes closed then unlikely that proprioception has been fully tested.

2) a haematologist?

NICE CKS link recommends that GPs seek advice from a haematologist for patients with b12 deficiency with neuro symptoms. If GP won't refer you, perhaps you could persuade them to at least contact a local haematologist by letter and ask for advice.

If you have gut symptoms, have you ever seen a gastro enterologist?

GPs do not have to refer you if they don't feel it is necessary but you may be able to make a good case for referrals.

Putting requests into a letter to GP means they are harder for GP to ignore in my opinion. My understanding is that letters to GPs in UK are supposed to be filed with medical records.

Please think about ringing and talking directly to PAS. I'm sure they can suggest useful info to pass to your GP/other doctors.

In the end when I exhausted all my chances of getting NHS treatment I chose to treat myself ..I bitterly regret not choosing to self treat earlier. I did in later years manage to get some NHS treatment.

"came back at 180 pg/ml. They are refusing to give me a loading dose as my B12 isn’t low enough"

BSH guidelines (see link in my first post) and BMJ article suggest that patients who are symptomatic should be treated even if serum B12 level is within range.

I had multiple typical symptoms of B12 deficiency, including many neurological symptoms, with serum b12 results between 300 - 500ng/L.

Functional B12 deficiency

This is where there is plenty of B12 circulating in the blood but it's not getting to where it's needed in the cells.

Functional B12 deficiency is mentioned in this next link.

b12deficiency.info/b12-writ...

If GP refuses to treat you due to you having normal range serum B12 result then may be worth mentioning Functional B12 deficiency to them. I also suggest drawing their attention to the "NEQAS Alert" in above link.

Local Guidelines

Some parts of UK are using out of date local guidelines on treating B12 deficiency. Worth tracking down your local area guidelines and comparing them with national guidelines eg BNF, BSH and NICE CKS links.

Symptoms Lists

Do your GPs have a list of all your symptoms especially any neurological ones? Might be worth including one in any letters you write to GPs.

Neurological symptoms include

tingling, numbness, pins and needles, burning sensations, insect crawling sensations, tinnitus, muscle twitches, muscle fasciculations, flickering eyelids, restless legs syndrome RLS, vertigo, migraine, clumsiness, dropping things, bumping into things, strange gait (unusual way of walking), word finding problems, memory problems, balance issues, brainfog, proprioception problems (problems with awareness of body in space), strange behaviour eg keys in the fridge etc

There are many other neuro symptoms that can be associated with B12 deficiency. See lists below.

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

In relation to B12 deficiency, GPs often look for signs of peripheral neuropathy PN especially signs of sensory neuropathy so worth mentioning signs of PN.

Link about Peripheral Neuropathy

nhs.uk/conditions/periphera...

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

b12deficiency.info/b12-writ...

May be worth drawing GPs attention, in any letter, to the risks associated with not treating or under treating B12 deficiency eg SACD, sub acute combined degeneration of the spinal cord. See links in my other post about neurological consequences.

Symptoms Diary

May also be worth keeping a daily symptoms diary which tracks how symptoms change over time and when any treatment is received. Symptoms Diary can be useful evidence of improvement or deterioration in symptoms.

Changing GPs

Have you considered changing to a different GP surgery?

mygov.scot/register-with-do...

nhsinform.scot/care-support...

citizensadvice.org.uk/scotl...

Support

Do you have someone who can go with you to any appointments that might be challenging eg supportive friend or family member? Even better if they have read about B12 deficiency and understand what you are going through.

My impression is that GPs and specialists are likely to be kinder if a witness is present.

PAS support groups can offer emotional support and are a great way to find out useful info eg helpful GPs in the area.

If there's no PAS support group in your area , PAS are always happy to hear from people who want to start one up.

You do not need to have a confirmed diagnosis of PA to join PAS.

Complaints

Part of the reason I suggest putting queries about treatment/diagnosis into letters is I feel it's useful to have a paper trail in case there is a need for a formal complaint in the future. Keep copies of any letters you write.

It is possible that writing to GPs may irritate them.

Personally I gave up worrying about irritating GPs when I realised that I was headed for dementia and spinal damage if I didn't get treatment.

Good luck

.

Thank you again for being so helpful

palmier
palmier
in reply to Clarkie477

Since your b12 barely changed after 50 days on 50 mcg tablets, it looks as if you have PA or at least some kind of absorption problem. 178 to 180 is within the margin of error, so not really an increase. Does the doctor know that the IF test often gives false negatives in people with PA?

Clarkie477
Clarkie477
in reply to palmier

As far as I’m aware she thinks the test is 100% fool proof

My sympathy for the way you are being treated by your GP.

I had fairly similar treatment from mine. I did get 5 loading as my B12 was very low but they ignored my severe neurological symptoms and stopped the injections as now my B12 was over the base line.

At first I was upset, then angry so I found a private GP who gave me injections and taught me to self inject. It feels very good to be able to have an injection when I need one and not to be ruled by a GP who has not even read the NHS Guidelines for the treatment of B12 Deficiency.

It may come to that for me too, I’ve ordered some B12 from Germany. I am waiting on surgery getting back to me today after I caused a fuss yesterday and pointed out their failings in even diagnosing low B12 when very obvious symptoms were in front of them.

"I caused a fuss yesterday and pointed out their failings in even diagnosing low B12"

Might be helpful to follow this up with a brief as possible, polite letter to GP and a copy to practice manager, which expresses concerns and is backed up with evidence eg symptoms, test results, personal and family medical history, extracts from UK documents etc.

Try to take someone with you to future appointments to act as a witness. Keep things polite.

Sometimes if GP practice think a complaint is possible they can close ranks and become very protective of staff.

There is a possibility that GP/patient relation ship may come under severe strain. Have a back up plan, another GP surgery to go to.

Pressure was put on me to leave one GP surgery.

See section "Being removed from the register by a GP" in next link.

citizensadvice.org.uk/scotl...

They are not supposed to remove patients who have complained but I suspect that there are very subtle ways of pressuring people to leave.

Thank you again for all your help.

Good luck for today. Let us know how you get on. I'm glad you have a back up if they do not see sense.

I’m really sorry that your not getting anywhere with your doctors at your surgery. Maybe change surgery’s to another one in your area

Or you can write a letter to the surgery’s practice manager.

I too have had problems at my surgery and wrote a letter to the manager. I’ve also found out some interesting information about how the B12 is actually monitored.

So it turns out the tests we have is to test for how much B12 is in our body not how much is being absorbed. So we can have all the B12 in our body but not absorbing it or very little.

There is no test currently to test for the absorbing rate for B12

nhs.uk/conditions/vitamin-b...

It states that on the nhs website.

Here is also the guidelines for B12

nice.org.uk/advice/mib40/ch...

I would also recommend asking to get refferd to an endocrinologist which is a speclist who works with people who has deficiencies and maybe there will be a better out come.

Recommended checks:

B12

Iron

Vitamin D

Vitamin C

Thyroid

Folate

There maybe a possibility that if your low in other places it will be contributing to your symptoms.

Just to add I’m not a doctor or medical person I’ve just had a lot going on with my health and have had problems with doctors not taking my health seriously and hope to make it easier for others.

With me I was low on b12, folate and vitamin D

I was in a bad place with my health, I really appreciate what your going through

I hope you find the help you need.

Best wishes

Amy

Clarkie477
Clarkie477
in reply to LittleA

Thank you Amy.

Oh you poor thing. The last thing you need when you must feel really poorly is to have to fight ignorant doctors. The trouble is these days is that doctors treat blood test results as Gospel & frankly are rarely concerned by signs & symptoms if blood tests dont reflect anything. You could try getting the PA Society to talk to your doctor. 180 is very low & youve clearly shown theres a problem as the supplements made little difference. The PA test isn't accurate & there are many false negatives. Also there is more than one cause for b12 deficiency.

I also met a brick wall, though my GP did refer me to a neurologist it was a long wait so I decided to self treat & bought my own B12 vials, needles & syringes in the meantime. For me it took a further 10 months before my GP prescribed as the neurologist backed me so am glad I did this. My GP was amazed by the difference B12 jabs made to me....lol. So you might want to consider this. Its not right but you have to put yourself first....

Thank you. I am going to request to see a neurologist as my husband did a few of the recommended tests above, with me last night and I can’t even put one foot in front of the other without falling and I’m swaying whilst standing still.

"I’m swaying whilst standing still."

If you have neurological and other symptoms that are visible, may be worth getting them on film as evidence to show GP and specialists.

I would suggest that any actions that may result in loss of balance are only carried out in front of a doctor due to risk of injury.

I hope your husband is able to accompany you to any appointments. I had to tackle GPs and neurologists on my own as no-one was able to come with me...very disheartening not to have someone to back me up.

I had film of some of the unusual movements that were happening in my limbs but neurologist was quite rude when I struggled to explain or operate my camera due to severe brainfog. I wished I'd had someone with me.

If you write to GP to request referral to neurologist I'd suggest you mention any balance issues and might be worth asking to be assessed for SACD, sub acute combined degeneration of the spinal cord.

If you ring and speak to PAS directly they should be able to refer you to information about SACD. As you're a PAS member it may even be possible to arrange for your GP/other doctors to talk to PAS but you would need to discuss this with PAS first.

Ok I will look into that thanks.

I think it is appalling that one needs to take someone with you to receive civil behaviour and decent treatment from some GP's. Good advice though.

I

Neurological symptoms mean you should be having alternate day injections until no further improvement. That can take years as progess does slow down as time goes on. Am on daily as my tremors get worse inbetween jabs otherwise so watch out for that. Stick to your guns.....even if you have to buy your own at first make sure you tell them that your doing it to avoid irreparable damage.

Have a look at B12D.org set up Dr Chandry -now retired GP who fought hard for his patients - they have an online assessment with many of the symptoms/signs that shows up which of the nine systems are affected for you which you could print out & show your doctor. The process to get B12 jabs is painfully slow & my patience was sorely tested but keeping calm with your GP no matter how much you have to grit your teeth is vital. Frankly its ludicrous that the nhs make it such a hard process to get the jabs as the cost of a subcut b12 jab if you self inject is miniscule.

Thanks. I will have a look at the site you recommended

The level of response Clarkie477 tells you that you are in good company. Despite having what I now recognise as neurological symptoms when our practice told me I had PA and started the loading injections and was put on three monthly repeats they would not alter the frequency when the peripheral neuropathy got to be intrusive.

I reported that I was needing a top up after as little as three weeks and in desperation self injected, as they had taught me, for relief after about 18 months. That was in late spring of 2017 and have been doing so ever since.

They did write for a haematologist consultants advice who suggested I stop all injections for 6 months and then was retested to prove what I had. I refused.

I have discussed all of this at the annual overhaul us older patients get so they know I self inject. So when they decided I was just about diabetic I should see a neurologist as the podiatrist reported the lack of surface sensation in my feet as peripheral neuropathy. That was last September and I actually saw the consultant a week ago.

It was an interesting discussion following which blood samples were taken for Intrinsic Factor, irrespective of an acknowledgement this is only 50% accurate, plus Hepatitis and HIV, plus DNA. There were several of those little phials of blood filled , one of which had to be in a sealed light proof bag. The preliminary diagnosis was fine thread nerve damage in feet, below knees and in hands. There will be electric nerve tests as well. All this with the objective to determine the real cause on the neuropathy. I know from our discussion that the consultant will not endorse the frequent injection regime (7 to 10 days as required) I am now following.

I have enough 1mg in 1ml hydroxocobalamin injection solution ampoules to last for over two years and German friends who will take delivery of more if needed. So whatever the result of the consultations and tests I can keep myself comfortable, itch, twitch and tingle free. Even with a diagnosis of fine thread nerve damage there is no cure, just treatment and that is with such as codeine, gabapentin or amitriptyline. The latter having been prescribed and tried will not be used as I had bright pink forearms in the early morning after taking the first one and a day pinned to the loo.

There is, if I understand the consultant correctly, no clinical evidence to support there being a benefit for a short period re-injection of B12. In which case as the license for the use of B12 In the UK is for 12 week intervals anything shorter cannot be supported by the cash strapped NHS.

Self injection is easy. With the correct equipment it is safe and more or less painless. Takes about 5 minutes and in bulk (100 shots) costs less than £1 a time. You are then in charge.

I hope everything works out right for you, Clarkie477. This forum is a very real comfort.

Clarkie477
Clarkie477
in reply to kcbrecks

Thank you. I ordered the ampules from Germany yesterday, thanks to this site for leading me there. I’ve also ordered all the necessary needles etc. I am however seriously nervous about injecting myself even though I have no problem with anyone else doing it. I do take amitriptyline now and again because of TMJ pain but it’s only 10mg and it is very effective so I’m able to come back off it usually a week later. I’m not sure if maybe you’re on a higher dose and this is why it’s made you ill? Wishing you good luck in any further tests.

kcbrecks
kcbrecks
in reply to Clarkie477

It was the 10mg pill. It did absolutely nothing for the nerve pain but codeine sorted it at 3am. I looked at the instructions and it said if there was a pink rash don’t take anymore.

Being nervous is what most of us are before we do it. The first time is the worst.

Many years ago I was given advice on handling things you are afraid to do and it is so true - if you can do it once you can do it twice, if you can do it twice you can make a habit of it. (Dale Carnegie)

I think the license for hydroxycobalamin covers 8 weekly intervals as BNF suggests maintenance jabs every 2- 3months for those without neuro symptoms and every 2 months for those with neuro symptoms.

BNF

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

She was rather dismissive of people who inject more frequently and not prepared to move off those intervals. I am just pleased to get the diagnosis of peripheral neuropathy from them. They can’t then say it is all in the mind.

As it is I couldn’t survive comfortably on an 8 week schedule as at the moment it is barely 8 days before I am twitching and itching again. The tinnitus is constant but quiet.

£100 for ampoules and injection kit is not a problem but it would be good to be able to discuss your problems with a doctor occasionally openly. I am lucky I have a retired GP friend who is of the opinion that if it works then it must be the right way to go. He can’t write me a private script though as he is no longer registered with the BMA.

They’ve given me first dosage recommendations as they said my B12 isn’t low enough and I’m not anaemic enough as my MCV and MCH were only slightly raised. 98.3 and 33.7 respectively.

What have they suggested?

Once you start to supplement it may nudge your B12 levels a bit further into the normal range and then they may say you're fine on low level supplements and your chances of getting injections will diminish.

With neurological symptoms suggestive of B12 deficiency, you should be on B12 injections even if your serum B12 level is normal range.

If they have suggested you take low level cyanocobalamin tablets then these are only recommended for proven dietary B12 deficiency. Even if B12 deficiency is due to diet then if neuro symptoms are present, injections should be given.

What's your diet like?

Do you eat plenty of B12 rich foods eg meat, fish, shellfish, dairy, eggs, foods fortified with B12?

If yes then less likely that B12 deficiency is due to diet and more likely that it is due to an absorption problem in gut eg PA, Coeliac, H pylori infection, Crohn's disease and other gut conditions.

Might be worth writing out a typical weekly diet of food and drink for the GP so they can see whether or not you are eating a B12 rich diet.

Have you seen a gastro enterologist?

If B12 deficiency is linked purely to Coeliac disease then a strict gluten free diet may allow gut to heal enough to allow B12 absorption in the gut to improve.

I believe that if Coeliac disease is untreated for a long time there may be some permanent gut damage.

A gastro enterologist should be able to assess level of gut damage from various gut conditions . They should also be aware that gut conditions such as PA, Coeliac etc may lead to nutritional deficiencies such as B12 deficiency.

"I’m not anaemic enough as my MCV and MCH were only slightly raised. 98.3 and 33.7 respectively"

The fact that your MCV and MCH were raised is suggestive of macrocytosis (enlarged red blood cells) which can be associated with both B12 and folate deficiency.

What are your folate levels like?

Do you also have iron deficiency? Check your ferritin levels and any other iron tests.

B12 and folate deficiency can lead to macrocytosis (enlarged red blood cells RBC).

Iron deficiency can lead to microcytosis (small red blood cells).

If you have both iron and B12(and/or folate) deficiency then the effects of the iron deficiency may mask the effects of the B12/folate deficiency and your RBC may appear to be normal size or close to normal size on the Full Blood Count.

If you have the patience, I suggest putting your blood results on here. Make sure no personal details that can identify you or GP are included.

It may be worth mentioning to the GP that about half of those with b12 deficiency do not show any signs of macrocytosis.

Have a look in the BSH Cobalamin and Folate Guidelines at the section that says many with B12 deficiency do not have macrocytosis.

There is a useful summary of mainly UK documents in the fourth pinned post on the forum which mentions that 20% of those with b12 deficiency do not have anaemia.

Might be worth including relevant quotes from BSH guidelines in any letter you write to GP.

BSH Cobalamin and Folate Guidelines

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

How about a letter to GP based on the templates in these links?

b12deficiency.info/b12-writ...

b12deficiency.info/b12-writ...

With balance issues I think it's urgent that you get a referral to a neurologist.

There is a window of opportunity to avoid permanent neurological damage in people with b12 deficiency.

If GP refuses to refer you, are you in a position to seek a private neurological consultation?

This is no guarantee of better treatment though.

I feel angry on your behalf.

I e mailed Tracey this morning and asked her to help me compose a letter if I need to. I know it will cost me money but my fuzziness is worse than yesterday and I want to get it absolutely spot on. I will have the neurologist question put in the letter. If they continue to refuse to treat me and refuse the neurologist then I will change GP practice. My husband wants me to anyway as he is absolutely livid. Also the reason I haven’t taken him with me to appointments. I don’t know if he’d be able to stay calm as obviously he sees such a difference in me since this all started last year and he is also frustrated that he can’t do anything to help me at this moment in time. If need be I will pay for a neurologist. Thanks again.

Just to say that I added more to my post above which you may not have read.

I was put on 50mcg cyanocobalamin for 50 days and they didn’t work so was given one injection and then I’ve to get a follow up every three months.

I eat everything, except for snails! I even add marmite to gravies and love it on a bit of toast.

I think the following may be a reply you meant for kcbrecks as I’ve been checked for coeliac disease and all seems fine on that front. I’ve been told Crohn’s is very difficult to diagnose if it’s in the small bowel and I do have periodical severe pain in lower right quadrant which is currently being monitored by a gastroenterologist. I have been tested for PA and it all came back negative for antibodies etc.

My folate was deficient but is good now.

Thank you for pointing that out..I've altered my post above.

"I’ve been checked for coeliac disease and all seems fine"

Which tests did you have for Coeliac? I suggest checking your test results to see which blood tests they did.

They should have done at least two tests

1) tTG IgA (also known as tissue transglutaminase IgA)

2) Total IgA

If result for Total IgA was negative or below the normal range, it means the patient has IgA deficiency and their bodies cannot make the antibodies to gluten that the tTG IgA test checks for, even if they have Coeliac disease.

People who have a Total IgA test which shows they have IgA deficiency should then be given alternative Coeliac tests such as

1) Immunoglobulin G (IgG) EMA

2) IgG deamidated gliadin peptide (DGP)

3) IgG tTG

Although most UK Gps will order the tTG IgA (tissue transglutaminase IgA) test if they suspect Coeliac, they often forget to do the Total IgA test so strongly recommend you check you've had both.

If patient has symptoms suggestive of Coeliac disease but their blood results are negative, they should be referred to a gastro enterologist.

See link about NICE guidelines Coeliac disease in my other post on this thread.

"I have been tested for PA and it all came back negative for antibodies etc. "

Does your GP know patients can have Antibody Negative PA?

Might be worth mentioning possibility of Antibody Negative PA in any letter to GP. PAS can point you to more info on Antibody Negative PA.

"I’ve been told Crohn’s is very difficult to diagnose if it’s in the small bowel "

Diverticulosis is another gut condition that can sometimes lead to B12 deficiency.

nhs.uk/conditions/diverticu...

"I was put on 50mcg cyanocobalamin for 50 days"

As far as I know that type of treatment is recommended only for dietary B12 deficiency. If you're eating a B12 rich diet then GP should know that any B12 deficiency symptoms are more likely to be from a gut condition.

A high alcohol intake may affect B12 levels so worth mentioning to GP if your intake is high.

I hardly drink at all and if I do it’s always in moderation. I don’t do hangovers.

I am not sure why she did that as she knew I had B12 rich diet.

These are all points I will bring up with Tracey when I speak to her tomorrow. Thanks

Hi everyone. Just an update. The doctor I saw on Monday had a chit chat with the doctor that prescribed one shot only and then one every three months. They’ve both decided this is enough. To say I’m distraught doesn’t even come close.

Please don't give up.

From personal experience I know it can be difficult to pick yourself up from a disappointing telephone or face to face appointment.

Each time I saw a different GP or a different neurologist or other specialist I was so hopeful that they would listen. I had many disappointments and was so upset by bad experiences such as being snapped at and shouted at that I almost gave up fighting.

I'd feel anxious and upset for a few days then I'd start to feel angry about the way I'd been treated. I couldn't bear the thought that other people could be suffering in the same way due to GPs ignorance and I felt that it wasn't just me I was fighting for.

What I came to realise was a very hard life lesson that the only person who was going to help me at that point was me and that if I didn't get treatment I was going to end up seriously disabled.

Keep fighting.. try a letter ....and if all else fails you can consider self treatment.

I cynically think that some GPs would prefer their "persistent" patients to give up trying to get answers.

Why don't you leave a message on the PAS answerphone?

PAS tel no 01656 769717 answerphone

Perhaps contact the PAS group in South Scotland?

pernicious-anaemia-society....

You will need to log in to the PAS website to access contact details.

I realise this group might be too far for you to get to meetings but they may be able to chat over the phone.

In future posts it might be worth mentioning Scotland in the title of the thread as this would hopefully get the attention of forum members from Scotland.

I wondered if you were in an area that had out of date local guidelines for treatment and diagnosis of B12 deficiency. If you get hold of the local guidelines for your part of Scotland I suggest comparing them with NICE CKS, BNF , BSH links in one of my other posts.

Guidelines from Glasgow area.

ggcprescribing.org.uk/blog/...

There is also a patient information leaflet about B12 deficiency from GGC.

Will PAS help me when I’ve had a negative test result for PA?

I will try to keep positive but if they’ve already made up their minds I’m thinking a letter may just be filed under B for bin.

PAS can certainly pass on useful info about PA and reliability of diagnostic tests.

Martyn Hooper, chair of PAS, had negative test results in IFA test more than once before finally testing positive. I think he discusses this in one of his books.

They can support people who are trying to get a PA diagnosis or trying to get recommended level of treatment. See links below.

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

martynhooper.com/2018/05/08...

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 show updated BNF info.

"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".

I also plan to read ""Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD

My understanding is that in UK, letters to GP are supposed to be filed with a patient's medical records. You could always include a request in any letter for a copy of letter to be placed with your medical notes/file.

I used to have a copy of any recent letter with me at appointments in case GP had mislaid their copy.

I also used to refer to previous letters in appointments which meant they had to bring a copy up on their screen.

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

I suggest you also look at Coeliac UK website if you think Coeliac disease is a possibility.

coeliac.org.uk/information-...

Ok thanks Sleepybunny. I don’t feel so great so I’m going to sign off for the night. Thanks for all your great advice

Hi again,

There is a Thyroid support group that meets in your part of Scotland, they also welcome people with B12 deficiency and other auto immune conditions. See next link to a thread on Thyroid UK forum.

healthunlocked.com/thyroidu...

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