Help for next appointment: Well I’ve... - Pernicious Anaemi...

Pernicious Anaemia Society
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Help for next appointment

SMXX
SMXX

Well I’ve had my loading dose of 6 injections and on folic acid 5mg... I’m feeling absolutely horrendous!! The usual symptoms, nausea, body pain, dry mouth, awful taste in mouth, heartburn, also body shaking and as you all know the list goes on and on!! 😔

I’ve had referral to consultant and said I have to have endoscopy which is booked for 7th September!!. Is this procedure as awful as I’m expecting?.

I’m back at the Dr tomorrow to request another set of loading injections, I don’t hold out much hope but with all your support I’m going to give it my best shot !!!

Do i refer to the NICE guidelines as I’ve had no improvement at all, if I’m honest I feel bloody worse !!! X

21 Replies
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I did too after first loading doses. I was very ill. The second lot of loading doses restarted 6 weeks later. I aksi dreaded it. They gave me the best improvement to date. I continused with every other day for some time until 'no further improvement. I took advice from here

Hope same happens for you.

Di try. I asked gopeople to read bnf guidelines. Also neurologist had put on letter to follow guidelines. It wasn't easy but very worthwhile getting thrm

Do you have the link for it love, my brain is scrambled!! Cannot think straight. I had 6 over 3 weeks. I just think I’ll get fobbed off with every 3 months !! I have so many neurological symptoms...

Thank you, you’ve given me hope that I’ll start to feel like the old me again soon ! X

clivealive
clivealiveForum Support

Hi SMXX I would definitely push your doctor to continue with the loading doses "until there is no further improvement" per the NICE/BNF guidelines

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

When it say "No further improvement" that does not mean until all symptoms have "gone".

It would be a good idea to list all your current symptoms and grade them for severity day by day noting which ones are improving or otherwise.

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 you are having starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.

I am not a medically trained person but I've had Pernicious Anaemia (just one of many causes of B12 deficiency) for more than 47 years.

I wish you well.

Clivealive, thank you so much for your response, very helpful.

I’ve been keeping a diary since diagnosed and will also take some notes I’ve taken and your website printout.

My folic acid was low at 1.7 on diagnosis so like you say it will take time to heal.

I’ve been taking 5mg of FA.

Hope you are well ? X

Good morning. Re: endoscopy. My daughter had one done and was very nervous about the procedure. She’s a bit of a wuss! Have the sedative that they offer. My daughter was surprisingly relaxed when she’d had the procedure and said it wasn’t as bad as she thought. Good luck.

Hi,

Has GP checked your potassium levels?

Some people experience a drop in potassium (Hypokalaemia) when they start treatment.

BNF

bnf.nice.org.uk/drug/hydrox... See section on side effects.

Do you have any neuro symptoms eg tingling, pins and needles, numbness, limb weakness, migraine, tinnitus, restless legs syndrome, memory problems, balance problems, vertigo, muscle twitches, clumsiness, bumping into things, dropping things, proprioception problems ( problems with awareness of body in space) etc?

If yes to neuro symptoms then the recommended UK treatment is more intensive than 6 loading doses. It's a loading jab every other day for as long as symptoms continue to improve.

UK recommended treatment for patients without neuro symptoms is ....

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

UK recommended treatment for patients WITH neuro symptoms is ...

A B12 jab every other day for as long as symptoms continue to get better ( could mean every other day jabs for weeks even months) then a jab every 2 months.

UK B12 documents

BSH Cobalamin and Folate Guidelines

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.

BNF

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

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

BNF Children

bnfc.nice.org.uk/drug/hydro...

NICE CKS

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

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

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".

PAS worth joining if you have a PA diagnosis or suspect PA.

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....

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

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

hdapatientcaretrust.com/

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness

b12awareness.org/

B12d.org holds support meetings near Durham, UK

b12d.org/event

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

Link about endoscopy

nhs.uk/conditions/endoscopy/

There are different sorts of endoscopy.

Might be worth asking if your endoscopy is going to look at terminal ileum, part of the gut where B12 absorption takes place.

I am not medically trained, Good luck.

SMXX
SMXX in reply to Sleepybunny

Thank you for all of this information.... sadly to no avail!!!

He told me the haematologist has said to carry on with b12 and FA, but he says that my tingling and pins and needles and all of my other neurological symptoms are due to my gabapentin and cocodamol that are prescribed. What rubbish I’ve been on them both for 10 plus years ! He said that b12 neurological symptoms are both sides that are affected (pins and needles, numbness, etc) not just one side. Sadly he didn’t state how often with B12.

I told dr that I’ve felt worse and he said to come back in a week and he will research what I told him about the higher loading doses of every other day.

He wanted blood test done there and then, I argued saying that would give false readings!! He did not like that and said it would tell him what b12 was doing !!! He ordered loads of other bloods too so we’ll see what happens next Friday eh!!

What I was most upset with was his question of are you suffering from anxiety and depression.... NO !!! I’m absolutely rung out and suffering from b12 deficiencies and neurological symptoms!! 🤯🤬 xx

Sleepybunny
Sleepybunny in reply to SMXX

Hi,

What does GP ( and any specialists) think has caused your B12 deficiency?

Could it be diet?

Do you eat plenty of b12 rich food eg meat, fish, dairy, eggs, foods fortified with B12?

Being vegan or vegetarian can be a risk factor for developing B12 deficiency.

Have you been tested for PA (Pernicious Anaemia)?

If there is any chance you may have PA then I suggest joining and talking to PAS before next appointment.

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.

Have you been tested for H pylori infection?

patient.info/digestive-heal...

Tested for Coeliac disease?

UK guidelines on Coeliac disease indicate that anyone with unexplained B12, folate or iron deficiency should be tested. Also anyone with a first degree relative with Coeliac disease.

NICE guidelines Coeliac Disease (2015 version)

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

Coeliac Blood Tests

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

Any chance of internal parasites eg fish tapeworm? Do you ever eat raw fish eg sushi/smoked salmon etc.

Any exposure to nitrous oxide?

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

Any medication that may affect B12 ( or folate) levels?

Gabapentin and other anti-epileptic drugs have been associated with low B12 levels and folate levels in some studies.

ncbi.nlm.nih.gov/pubmed/212...

Metformin, a diabetes drug, has also been associated with low b12 levels.

ncbi.nlm.nih.gov/pubmed/212...

"Thank you for all of this information.... sadly to no avail!!! "

I always put queries about treatment/diagnosis etc into brief, polite letter to GP.

see letters link in my other post.

In UK, letters to GPs are supposed to be filed with medical notes so hopefully less likely to be ignored than info passed on verbally or on photocopies handed over.

"b12 neurological symptoms are both sides that are affected (pins and needles, numbness, etc) not just one side"

Are your neuro symptoms only on one side?

B12 deficiency symptoms are usually symmetrical but some members of this forum have reported that one side is more affected than other.

Were you ever given a brain MRI to check for signs of a stroke?

Some people with low B12 have high homocysteine levels. High homocysteine can be a risk factor for strokes.

Link about homocysteine test

labtestsonline.org.uk/tests...

Other B12 info

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

b12deficiency.info/what-to-...

Best advice I ever had was to always get copies of all my blood test results. I learnt to do this after being told everything was normal/no action more than once then I found abnormal and borderline results on the copies.

Some UK GP surgeries have online access to a summary of test results/records. Details should be on your GP surgery website.

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...

"I have so many neurological symptoms... "

It's vital that you get adequate treatment. There is a risk of permanent neuro damage if patients are under treated. It's possible that your GP may not be aware of the potentially severe consequences of under treatment.

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.... See Page 2 of articles.

Blog post from Martyn Hooper's blog, mentions SACD

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

If you're a PAS member, they may be able to help by passing on useful info and in some cases they may be able to write a letter. You do not have to have a confirmed diagnosis of PA to be a PAS member. For some people it takes years to get diagnosed.

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

pernicious-anaemia-society....

Referrals

Have you been referred to a neurologist?

It's important to exclude other possibilities besides B12 deficiency.

Hopefully you'll be lucky and get a neurologist who understands B12 deficiency but don't be shocked if they don't...there is sadly ignorance about B12 deficiency among some doctors.

"he said to come back in a week and he will research what I told him about the higher loading doses of every other day"

I suggest taking a copy of BNF advice and maybe a copy of BSH Cobalamin and Folate Guidelines with you to next appointment to show GP. PAS should be able to suggest useful info.

BNF

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

If GP has a copy of BNF book on bookshelf or desk then they need to look at Chapter 9 Section 1.2

GP may not be aware that BNF advice on treating B12 deficiency was updated a few months ago, their BNF book may be out of date. They should be able to access BNF online.

Help for GPs

1) PAS website has section for health professionals. It is free for them to join as associate members, Perhaps your GP would be interested in joining?

pernicious-anaemia-society....

2) PAS website had a library section with many useful leaflets/articles eg

"An Update for Medical Professionals: Diagnosis and Treatment "

pernicious-anaemia-society....

"it’s the top end "

I don't think a gastroscopy looks at terminal ileum which is where B12 absorption takes place in the gut. You could ask if terminal ileum is going to be looked at. Any damage to terminal ileum is likely to affect B12 absorption.

Gastroscopy

nhs.uk/conditions/gastroscopy/

fbirder
fbirder in reply to Sleepybunny

No, a gastroscopy is stomach and duodenum only. To look at the terminal ileum would require a very long (about 8 m) tube.

They can examine the ileum during a colonoscopy. But it's not done routinely,

I presume your endoscopy is a gastroscopy (down from the top end) rather than a colonoscopy (up from the, literal, bottom).

I've had several gastroscopies and they aren't anything to worry about. You'll be given the option of a local anaesthetic spray for the back of the throat (my preferred option) or a sedative. WIth the latter you need to be taken home by somebody afterwards. With the local you can take yourself home after an hour.

SMXX
SMXX in reply to fbirder

Hi, ha,ha no it’s the top end ... I’m gonna go for sedative definitely as I’m panicking about it ... just want it over with really x

fbirder
fbirder in reply to SMXX

Yes, I understand that most do that. But I really wanted to watch it on the TV, so I wanted to be awake. Yes, I am weird.

Now, after four (five?) of them I find it quite easy. It helps if you've learned any meditation or relaxation techniques. I think I'm due another in December.

Re the Endoscopy - I refused one several times until driven to desperation I agreed. The consultant said she would get my endoscopy done by specialist endoscopy nurses. I opted for anaesthetic too. My blood pressure went so high while waiting that they nearly sent me home: I said if you do I’ll never get up the nerve to come back. I had the procedure and once I was ‘out’ it all happened without any problems. I could now face one again, although I would still be nervous. The nurses were absolutely fantastic, so I think that is the way to go. Good luck, and courage.

PS Having just read fbirder’s post I wanted to clarify that I went for the sedative not the anaesthetic spray - had bad previous experience using the spray route. And I am talking about Gastroscopy, not colonoscopy.

Hi love... sleepy bunny they have not said ?? All started from going to the dentist and have smooth patch on my tongue and sore mouth then referred to Drs for bloods and then it all began.

I’m not veggie or vegan and have a good varied diet. Well first dr said I have PA and gave me a leaflet printout and started on FA before B12.

Then another Dr referred me privately to consultant very quickly. Consultant said I’d need another blood test, I’m guessing intrinsic factor and endoscopy very quickly and privately next week.

I’m guessing due to this they think it’s something nasty. I haven’t asked as don’t want to know until tests have been done.

Dr today(different one) sent me for emergency bloods to be done and I saw intrinsic factor on screen plus coeliac screening and others I’m not sure of??

No bugs or parasites 🦠!! Ewwww!! Or raw fish and no surgeries either. I’ll have to wait and see on Friday about the results?? B12 is gonna be high due to loading doses but hey it’s done now. I’m in UK too.

Thank you your help it is really appreciated!! Don’t know my arse from my elbow lately... this is all so bloody overwhelming and your help is getting me through. Xx

Hi,

I hope you will get the help and treatment you need.

I wish I had had all the info I do now years ago...I might not have had over 15 years of suffering. I'm much better now and can enjoy my life although there are still things I cannot do.

What I did learn in a nutshell is that sadly you cannot always rely on GPs and specialists.

Your doctors do seem to be acting quickly which is good.

I had so little interest despite a multitude of symptoms including numerous neuro symptoms, IBS type symptoms, heart palpitations, I could go on.....

I'd stress again that I think it's important to try to get copies of all test results. GPs and specialists can miss things...some of mine did. Easy to get copies of results from GPs but more difficult to get copies of results from hospitals.

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

Link above mentions online records, my understanding is that you can request access to paper records at GP surgery as well.

On GP surgery website , look for Patient Access or Emis Access or Online Access. Online records are just a summary so may not have everything.

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

To get hold of test results etc from hospital

a) Ask specialist's personal assistant for copy

b) Try hospital records office

"and started on FA before B12. "

I'm surprised by this...it's important to treat any co-existing B12 deficiency at the same time as treating folate deficiency. See Management section of next link which warns of potential problems if folate deficiency is treated before B12 deficiency.

Folate Deficiency

patient.info/doctor/folate-...

One of the signs of folate and B12 deficiency is macrocytosis (enlarged red blood cells). If folate treatment is given then red blood cell size may return to normal range therefore masking one of the signs of B12 deficiency but neuro damage may occur if B12 deficiency not spotted.

"I saw intrinsic factor on screen plus coeliac screening and others I’m not sure of?? "

They obviously think PA (Pernicious Anaemia) is a possibility so please think about speaking to PAS before next appointment.

There is a potential problem with testing IFA (Intrinsic Factor Antibody) after starting B12 injections...my understanding is that IFA should already have been tested according to national guidelines.

The problem is that testing IFA after B12 jabs have started can lead to a false positive result.

See section on "is there anything else I should know" in next link.

labtestsonline.org/tests/in...

Coeliac screening

Try to make sure that they do/did both recommended first line tests below. In UK, doctors sometimes forget to order second test.

1) tTG IgA

2) Total IgA

tTG IgA test checks for a particular antibody to gluten.

Total IgA checks which patients have IgA deficiency.

A patient with IgA deficiency will not produce the antibodies to gluten that tTG IgA test checks for even if they have Coeliac disease.

Patients with IgA deficiency will need alternative tests for Coeliac disease. See next link.

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

Were you asked to make sure you were eating plenty of gluten in more than one meal per day for several weeks before blood taken for Coeliac tests?

One reason for negative results in tTG IgA test in Coeliac patients, is that not enough gluten was being eaten before blood taken, therefore not enough antibodies to gluten were circulating in blood to register a positive result.

"No bugs or parasites"

You could check test results to see if you have been checked for H Pylori infection.

"All started from going to the dentist and have smooth patch on my tongue and sore mouth "

Well done to your dentist for being on the ball and spotting the problems in your mouth.

Hi,

I’m glad you are much improved and enjoying life, certainly makes you realise just how quickly life can turn doesn’t it?.

I can’t stress enough how much I appreciate your responses with so much information.

Before consultant appointment I asked if he would have access to my records and recent blood test, Dr printed copy out and I took it with me, glad I did as consultant asked to keep them. I have picture but unsure if I can attach on here?.

I will be sure to mention the intrinsic factor false positive result when i go on Friday, although I’m not hopeful the information will be received well by Dr.

The Dr, just decided at appointment yesterday to test for coeliac disease so nothing passed on regarding prep for the test, I was asked to go straight in after appointment for blood tests!!.

I have received all equipment for Si and I gave myself first injection last night. I was elated it was easy and pain free to be honest, however I’ve got a slight bruise this morning (I went for upper arm) I should have pulled syringe up to check if I’d hit anything but in my haste I forgot!!. I will be sure that I do this next time.

Do you Si ??, I’m wondering how frequently I should be doing it really??.

I had MRI a long time ago for same symptoms but nothing reported back about stroke etc?. I’ve not been referred to neurologist.

The Dr did mention at previous appointment (not yesterday) that I had low folate back in 2014, although no treatment given at the time?.

I will ensure I study the links you’ve provided and print out also to take to my appointment on Friday.

Thank you

Sarah xx

Sleepybunny
Sleepybunny in reply to SMXX

Good luck...

"just decided at appointment yesterday to test for coeliac disease so nothing passed on regarding prep for the test, I was asked to go straight in after appointment for blood tests!!."

Deciding to test for Coeliac and then taking blood straight away is not really ensuring that there is plenty of Gluten in your diet.

I suggest talking to Coeliac UK who have a helpline number.

coeliac.org.uk/home/

" I had low folate back in 2014, although no treatment given "

Were any further tests done in 2014 after low folate result?

I was forced as an absolute last resort to self inject when all my efforts to get NHS B12 treatment failed. I tried really hard to get treatment...thankfully my current GPs are more understanding.

Some GPs are not very understanding of people who choose to SI so be prepared for GP/patient relationship to come under strain.

"I have picture but unsure if I can attach on here?."

Sorry I'm not very good with that sort of thing...you could just type results out in a post.

Make sure there is no personal information eg your name, Gps name etc if you attach a picture.

I am not medically trained.

SMXX
SMXX in reply to Sleepybunny

Hi,

Good to hear that you are finally being looked after by your current GP’s.

No, no further tests happened in 2014!!

Yes I’ve heard that also regarding Si, however I want to ensure I’m receiving the appropriate and correct treatment from medical professionals. So I will push / nudge politely.....

I’ll attempt to type out some of the results as I think I’m unable to attach picture on here.

Serum Vit B12- 157

(Consistent with early b12 deficiency, suggest FBC in 3 months)

Serum Folate- 1.7

(Low folate - consider cause and treatment)

FBC- just out of normal range-

(RBC’s shows mild marocytosis)

Total White Cell count - 9.1

Red Blood Cell- 3.58

Haemoglobin estimation 129

Haematocrit- 0.38

MCV-106.1

MCH-36

MCHC- 339

All of the above were showing ! Showing not normal?.

Hope this makes sense to you??

Sarah xx

Sleepybunny
Sleepybunny in reply to SMXX

Hi,

Do you have the reference range for your blood test results? It makes them easier to interpret.

Ref range will usually be given in brackets after result eg

Serum B12 250 ng/L ( 180 - 900 ng/L)

Your MCV looks likely to be over range which can be associated with macrocytosis.

Macrocytosis can be associated with B12 and folate deficiency. Not everyone with B12 and/or folate deficiency will have macrocytosis. Macrocytosis means red blood cells are enlarged.

Do you have a result for RDW ( RBC Distribution Width)?

Increased RDW means abnormal variation of RBC size which may suggest iron, B12 and/or folate deficiency.

Might also be worth posting these results as a new separate thread then more people will comment on them.

Local Guidelines

Some parts of UK are using local NHS guidelines on B12 deficiency treatment that are out of date and do not match what is in current national guidelines.

Might be worth tracking down local guidelines for your area and comparing them with current national guidelines ( see BNF, BSH, NICE CKS links in one of my other posts). Check when they were last updated.

It helped me to understand why I had not got the recommended treatment.

Track down local guidelines by

1) Search on local NHS website

2) FOI request (Freedom of Information) request to local NHS website.

3) Ask GP practice manager for a copy of guidelines (this may irritate them).

4) Local MP may be able to help track them down if you can't.

Local MP may be interested in your story if you struggle to get recommended level of treatment.

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

Please think about contacting PAS at some point soon.

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