Pernicious Anaemia Society

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Updated B12 and folate results

Hi all,

I have posted a couple of times before but I have just got updated blood results- GP has given me B12 and folate results over the phone but will request others and update in due course.

B12 has dropped to 122 (range 180-1000)

(B12 was 180 in 2012, 192 in 2015)

Folate has dropped to 4.0 (range >4.0)

(Folate was 10.0 in 2012, 7.0 in 2015)

GP has prescribed me a course of B12 injections- at last! She recommended I take some folate supplement but didn't suggest prescribing them as I'm just in normal range- can anyone recommend a good folate supplement? Want to make sure I'm supplementing this correctly as I know it usually drops when B12 injections are started. I'm having the loading doses and then being retested in 6 months, earlier if I feel tired still. Does this sound about right?

She has also referred me to the colorectal team to look for a cause (as I have stomach issues as well). Feeling positive for once!

I'm planning to request my ferritin results as these were 22 (range 10-300 in 2012) as I assume they will have dropped in line with B12 and folate.

Any advice on what to do next would be really appreciated! Folate supplements, any tests I should be asking for etc- should I ask to have folate retested sooner due to B12 injections?

Thank you all so much for your help 😊

Amy

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17 Replies

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FoggymeAdministrator

2 years ago

Hi -___-. Just a quick comment....your ferritin level is very low and could be indicate iron deficency anaemia. This coild make you feel quite poorly. Has you GP prescribed any iron supplements? Ideally your ferritin levels need to be at least 100 or in the top third of whatever reference range is quoted.

Also - people with B12 deficiency often have low vitamin D levels - might be a good idea to get your GP to check vitamin D levels too.

Just wondering of,your GP has tested your anti-IF antibodies to see if your have pernicious aneamia (this can often be accompanied by stomach issues and the B12 deficency it causes)?

I really can't understand why your GP has decided to wait for six months and re-test your B12 levels. This is not the standard treatment for B12 descent, and your B12 level is very very low.

Also - if you have neurological symptoms you should be treated with an intensive course of B12 injections (every other day after the loading doses, until not further treatment). If this is the case, then treatment should be carried on and you should not be waiting six months for a retest.

Might be a good idea to check out the PAS pinned posts to the right of this page when you log on. There's lots of information there that will tell you how your GP should be investigating and treating you (many GP's are not well informed about B12 deficency). In particular, have a look at the symptoms checklist, checking in particular, for neurological symptoms. And note the treatment for B12 deficency with neurological,symptoms - if you have these, you should go back to your doctor and request the intensive regime of treatment. Your GP can find this in a book called the BNF, a copy will be on the desk, it's the second item down sh they will have to read further than normal.

In the meantime, please post again if you have any more questions (you may have some when you've read the PAS pinned posts), or if you need any further support. Or just pop in for a chat. Lots of levels members here who will pop in to help.

Good luck and let us know how you get on 👍

2 likes

-___-

in reply to Foggyme

2 years ago

Thank you so much for your helpful and informative replies! My memory has been becoming progressively worse with a feeling of brain fog, and I can't stop bumping into and dropping things- do these count as neurological symptoms? I am getting a copy of all of the results taken tonight which will include ferritin and FBC so will post those results on this thread then to see if that is still low. No I haven't been prescribed iron tablets.

I live in Gloucestershire where the B12 guidelines have not been updated since 2005 another member has informed me- shocking really!

When I go to the doctors tonight to collect my printed results I will ask for either an appointment or a callback from a doctor to request the intensive B12 replacement and ask if I should be retested earlier, and also ask about the anti-IF antibodies and vitamin D testing.

There is a family history of autoimmune diseases (not sure if there is any history of PA though, would have to do a bit of digging). So perhaps the blood test for anti-IF antibodies would be a good idea.

Thank you so much again!

Amy

FoggymeAdministrator

in reply to -___-

2 years ago

Hi Amy. Yes, they are neurological symptoms.

And yes, shocking about the guidelines not being updated. unfortunately that seem to be the case in most - if not all - areas.

All doctors should be following the 2014 BSH Guidelines for the treatment of B12 deficency and folate disorders - many have never heard of them! (Included in a link below, so you can see how your GP should be treating you).

There's no point in your GP re-testing your B12 levels (unless looking for low levels in case you need more B12). Your levels will most certainly be high because you have had B12 injections - and they are likely to stay high for many months. Your GP should not use this as a reason to stop - or continue to give - B12 injections. All the guidelines state that once treatment with B12 injections has commenced, testing is no longer required / recommended.

Your GP should be testing your symptoms, not,your blood results.

Any autoimmune condition in the family can potentially pre-dispose to PA.

Ask your GP to test your folate levels. B12 and folate work together so if you have low folate, your body will not be able to utilise B12 properly. GP's often say folate levels are 'normal' when they're not. They need to be in the top third of whatever the reference range is.

I'm going to copy and paste some links at the end of this reply. They'll take you to the main things you need to know about the diagnosis and treatment of B12 deficency. They also include the main things you need to know about serum B12 testing (and it has many pitfalls) together with some things that your GP will probably not know about B12 deficiency. This will most likely include any lack of knowledge about the neurological regime of treatment for B12 deficiency, or the fact that you can have B12 deficency without having pernicious aneamia, that 30% of patients present with neurological symptoms without having macrocytic anaemia (often seen in B12 / folate deficency and PA)...and much more (information in the links below).

The most important factor is: your GP should be treating your symptoms - not your serum B12 levels (again, information about this in the links below).

This is crucial where neurological symptoms are concerned since under-treatment in the early stages can potentially result in irreversible neurological damage. I'm not saying this to frighten you - more to give you the courage to challenge your GP if you need to.

Your GP may offer oral supplements (many mistakenly do). This wrong. The recommended treatment for B12 deficency with neurological symptoms is B12 injections. Intensive regieme. 6 x loading doses - to get B12 levels up quickly - then alternate day injections until no further improvement - for up to two years.

Most people find that the best way to deal with this lack of knowledge on the part of GP's is to become their own mini-expert so that they can help their GP's to help them. So...

It would be a good idea to read all the information in the links below - in fact, it's vitally important that you do, since your GP is most likely unaware of it. And understanding it so you can make a case for treatment may be crucial to whether you get that treatment, or not 😖.

Highlight anything that is relevant to your case (pay particular attention to anything relating to neurological symptoms, B12 testing, treatment regimes etc.).

Print the UKNEQAS B12 Alert - show this one to your GP.

Take the documents with you to the surgery and make sure that you actually go through the highlighted portions with your GP if she is reluctant to treat you (not easy, I know).

If you can take some with you, even better. If that person can read your information and be prepared to step in to support you - even better still. GP's are often more attentive and less hostile if there is a witness in the room. Sad, but true.

Finally, please come back for more advice if your GP is still reluctant to treat you.

Good luck and let us know how it goes 👍

LINKS TO GUIDANCE

b12researchgroup.wordpress.... (Serious Caution Note about the use of Oral and Sublingual B12 Supplements)

evidence.nhs.uk/formulary/b... (BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

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

pernicious-anaemia-society.... (BSH B12 Deficiency / PA Diagnostic Flowchart)

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

onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert)

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

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

stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to know before seeing GP)

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

stichtingb12tekort.nl/weten... (B12 Deficiency and / or PA: Relationship (or not) to Anaemia & Neurological Symptoms)

Good luck 👍

2 likes

SleepybunnyForum Support

2 years ago

I am not a medic just someone who has spent years trying to find out what is wrong.

"Any advice on what to do next "

Short answer ....read (and get your family to read )as much as you can about B12 deficiency. B12 deficiency is not as well understood by Gps/consultants as it could be.

I take UK B12 documents with me to appts where B12 is likely to be discussed and if one was available I'd take a supportive B12 informed family member who was willing to speak up for me.

Long Answer... have a look at sources of b12 info listed below perhaps with a supportive family member?

1) BSH Cobalamin and Folate Guidelines. Gives guidance to doctors on diagnosis and treatment of B12 deficiency. I gave a copy to my Gps.

b-s-h.org.uk/guidelines/ click on box that says "Diagnosis of B12 and Folate Deficiency" should be on page 3 of listed guidelines or put "cobalamin and folate guidelines" in search box.

Have you had an IFA test (Intrinsic factor Antibody) test? This is a test that can help to diagnose PA(Pernicious Anaemia). The test is not always reliable and a person can still have PA even if IFA test is negative.

My understanding of the flowchart below is that in UK anyone with low B12 or anyone who is symptomatic for B12 deficiency with an in range B12 result should have an IFA test.

stichtingb12tekort.nl/weten...

I think some doctors think PA is a condition found in older people but it can affect all ages.

There are other causes of b12 deficiency besides PA see next link.

b12deficiency.info/what-are...

2) PAS (Pernicious Anaemia Society) website

pernicious-anaemia-society....

Have you spoken to the PAS?

Some people on this forum join the PAS. They can sometimes intervene on behalf of members by writing letters but I think it's easier for them to help people who have a confirmed diagnosis of PA.

PAS tel no +44 (0)1656 769 717 office open from 8am til 2pm every day except Sundays and some holidays.

There are some local PAS support groups in UK if you are diagnosed at some point with PA......in Gloucestershire, Isle of Man, Worcestershire, Berkshire, South Wales, Anglesey and North Wales. Details of these local groups are available to PAS members.

pernicious-anaemia-society....

3) B12 Deficiency Info website

b12deficiency.info/

4) b12d.org website

b12d.org/

5) BMJ B12 article

bmj.com/content/349/bmj.g5226

6) Pinned posts on forum. There is a useful summary compiled by Fbirder in the third pinned post.

7) book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Martyn Hooper is the chair of the PAS. the book is up to date with current UK B12 guidelines.

8) book "Could It be b12" by Sally Pacholok and JJ. Stuart

9) BNF (British National Formulary) Chapter 9 section 1.2

All UK Gps will have access to BNF.

evidence.nhs.uk/formulary/b...

Blood tests

I get paper copies of all my blood test results. In past I was told everything was normal and then found abnormal results when I got copies.

In relation to B12, I look at B12, folate, ferritin and full blood count.

patient.info/doctor/macrocy...

labtestsonline.org.uk/under...

Have you had a full blood count(FBC) recently? There can be useful clues on FBC . Low b12 and/or low folate can lead to macrocytosis (enlarged red blood cells). low iron can lead to microcytosis (small red blood cells). A person with low iron and low B12/low folate may appear to have a normal MCV

Have you ever been tested for Coeliac disease? in soem cases Coleiac disease can lead to b12 deficiency as it can affect the gut and lead to absorption problems with some nutrients.

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

What to do next?

b12deficiency.info/what-to-...

Unhappy with treatment?

b12deficiency.info/b12-writ...

citizensadvice.org.uk/healt...

HDA pct

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

hdapatientcaretrust.com/

B12 Deficiency Symptoms

pernicious-anaemia-society.... click on Symptoms Checklist

I gave a copy of the PAS Symptoms list to my GPs with all my symptoms ticked plus any extra symptoms added.

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

"I'm having 5 injections over a two week period, and then will have a blood test after 6 months. If it's still low then I'll have maintenance injections (I assume permanently?) "

This pattern of treatment sounds like it comes from a set of local NHS b12 guidelines rather than the BSH Cobalamin guidelines.

Can you track down the local NHS b12 guidelines for your area? By an internet search or a search on local NHS website. Some of these local guidelines have not been updated for several years.

Maybe your GP has not seen the BSH guidelines before and may not realise the guidance in them might be different to the local NHS B12 guidelines.

the BNF (link above) says 6 injections over 2 weeks not 5....

Is there any chance that your low B12 is diet related? B12 is in meat, milk, eggs, fish, shellfish so if you are vegan or vegetarian, diet related B12 deficiency is more likely. its possible that the GP thinks it is diet related. If you eat plenty of meat, eggs,milk, fish then diet related B12 deficency is less likely and it's possible that there is some sort of absorption problem going on.

Cases of b12 deficiency related to absorption problems may well need lifelong b12 injections.If a person has B12 absorption problems then a six month break without B12 injections could cause problems.

Do you have any neurological symptoms?

My understanding of UK B12 guidelines is that anyone with b12 deficiency with neurological symptoms whatever the cause should receive loading injections ASAP every other day for as long as symptoms continue to improve then once symptoms are stable its an injection every 2 months.

Info on UK b12 treatment a quarter through BSH Cobalamin guidelines.

-___-

in reply to Sleepybunny

2 years ago

First of all, thank you so much for all of the helpful resources! I will certainly get reading on all of those- I've done quite a lot of reading around B12 but the more you know! I will ask my GP to look at the updated BNF advice on the matter as this is clearly contradictory to what she has prescribed.

Personally I can see no chance that is is caused by diet. Same with my folate. I have always eaten meat and fish, as well as eggs and milk and my diet contains a lot of green vegetables.

Neurological symptoms (not sure if all of these are)- but I've had a persistent brain fog, gradual decline in memory (e.g. If I've just read something or watched a TV programme I will struggle to remember what has happened, even immediately afterwards). Recently I've been bumping into things a lot and dropping things- extremely frustrating!

Thank you so much again,

Amy

SleepybunnyForum Support

in reply to -___-

2 years ago

I'd urge you to contact the PAS soon.

PAS tel no +44 (0)1656 769 717 There is an answerphone so messages can be left.

They should be able to point you to useful info.

Bumping into things, brain fog, memory problems, clumsiness are all mentioned on the PAS Symptoms Checklist (link in post above). Some of the symptoms you mentioned are normally considered neurological symptoms.

Do you have balance problems, tingling, pins and needles, tinnitus?

If you have neurological symptoms due to b12 deficiency it's really important that you get treatment ASAP (not after 6 months) because neurological symptoms due to B12 deficiency can become permanent if left untreated or inadequately treated.

UK b12 treatment for those with b12 deficiency with neuro symptoms is loading injections every other day for as long as symptoms continue to get better then injections every 2 months. This could in effect mean loading doses for a period of weeks even months. Gp can check this in the BNF Chapter 9 section 1.2 and also in BSH Cobalamin and Folate guidelines.

Does your GP have a list of all your symptoms especially the neurological ones?

If you are a young person, some GPs may not consider PA as a possibility at first because it's more common in older people.

Have you ever had any thyroid tests? Quite a few people on this forum have both thyroid problems and B12 deficiency. The symptoms can overlap.

thyroiduk.org.uk/tuk/

there is also a Thyroid Uk forum on HU.

Do you have someone supportive? The reason I'm asking is that quite a few people on this forum were told they had ME/CFS/fibromyalgia and sometimes its very hard to challenge GPs without support from others.

My experience is that once stuck with a label of ME/CFs/fibro all investiagtion stops unless a person is very determined.

"When I go to the doctors tonight to collect my printed results I will ask for either an appointment or a callback from a doctor to request the intensive B12 replacement and ask if I should be retested earlier, and also ask about the anti-IF antibodies and vitamin D testing."

Maybe you could take a copy of the BSH flowchart with you. It makes it clear that people with low B12 or symptomatic for b12 deficiency with an in range result should have an IFA (intrinsic Factor Antibody) test.

I must admit I'm struggling to understand why you have not had an IFA test. Have a look at the paper copy of your B12 blood test. it's possible that the laboratory that did the test may have added a note advising an IFA test because your B12 was low.

I thought some of the info about writing to GPs in this link might be relevant for you. The person who runs the website can be contacted by e-mail.

b12deficiency.info/b12-writ...

"perhaps alter my course of treatment and retest sooner"

In the BSH Cobalamin and Folate guidelines I think it mentions that retesting after treatment has started is irrelevant.

Sadly sometimes people get the initial loading injections, their b12 levels increase and they are then told they don't need more B12 because their levels are within range. People with PA need injections for life. There are other causes of B12 deficiency that require lifelong B12 treatment besides PA.

Be prepared to really fight for correct treatment.

"Personally I can see no chance that is is caused by diet"

Does your GP know that you have a diet rich in B12 foods? If they know that hopefully they will consider the possibility of an absorption problem.

"There is a family history of autoimmune diseases (not sure if there is any history of PA though, would have to do a bit of digging)."

Family link in PA

pernicious-anaemia-society....

a note of caution....

Sometimes Gps don't react well to being questioned or challenged politely. This is why it can be helpful to have someone with you.

-___-

in reply to Sleepybunny

2 years ago

Just got printed copies of results. Everything looks pretty normal apart from the B12, folate and ferritin. Lab automatically did an intrinsic factor antibody test which was negative (although underneath it does point out this doesn't rule out pernicious anemia). I will follow this up with the GP. Obviously B12 is deficient and folate is borderline deficient (4ug/L, range is >4ug/L normal).

Underneath the B12 result the following is written:

'Low B12. Intrinsic factor Antibody result to follow unless already tested within the last 12 months. Prescribe parenterap B12 replacement.

- if IF Abs positive. Continue 3 monthly parenteral B12 replacement.

- if IF Abs negative. Withhold further parenteral B12. Repeat FBC and B12 after 6 months. If B12 fallen to low level resume 3 monthly parenteral B12 replacement. If B12 normal monitor FBC and B12 annually'.

Ferritin result is 26ug/L (range 10-300ug/L). Seems low but not 'abnormal' in laboratory's eyes clearly.

I will try and contact the PA society tomorrow.

Tinnitus- yes I frequently experience it. Pins and needles yes, but to be honest I dont know if I do more than your average person. Balance problems it's hard to tell- not usually but when I play sport (I play netball) yes!! Recently I've been all over the place falling over etc and not being able to stop my body from falling over!

I've had a TSH test on this latest set of blood results but nothing else before.

Yes my mother (and boyfriend) are both very supportive and I know either would come with me and fight my corner so I'll print of the resources and get her to have a read so we are armed with information at the next appointment!

One GP tried to send me down the pain clinic route before- not a chance, I know my body and know something is wrong- physical markers such as blood in urine and faeces must have a cause is my logic!

Interesting to see that retesting is determined irrelevant. That is my fear about the levels rising just enough for them to not treat again. After 5 years with a level below 200ng/L I've had enough!

GP mentioned possibility of diet and I did refute this and explained I had a good diet and have never cut out any food groups (let alone going vegetarian/vegan) so I hope she took notice of that, as I really don't believe it could be diet. I wouldn't want to rule anything out but I just can't see how it could be!

SleepybunnyForum Support

in reply to -___-

2 years ago

"GP mentioned possibility of diet and I did refute this"

Can be helpful to put things in writing.

b12deficiency.info/b12-writ...

Link does not seem to mention BSH Cobalamin and Folate guidelines, which I do when writing about B12.

My understanding is that letters to GP have to be filed with medical records so are a record of issues raised. Always keep your own copies of any letters written.

"I've had a TSH test on this latest set of blood results"

Might be worth putting a post up on Thyroid Uk forum. From what I have read about thyroid problems, a TSH result is not enough to get the full picture.

Marz who is active on this forum knows about thyroid problems and could hopefully tell you what other thyroid results it might be useful to have.

Just one thing i thought of...

Have you ever eaten raw or undercooked fish? Fish tapeworm infection can lead to b12 deficiency.

nhs.uk/Conditions/Tapeworm-...

There can be indications of parasite infection in full blood count (FBC) tests. I think a person with fish tapeworm infection may have increased eosinophils( a type of white blood cell).

labtestsonline.org.uk/under...

"Obviously B12 is deficient and folate is borderline deficient (4ug/"

If folate is deficient it will have a knock on effect on B12 levels. what have they said about your folate levels? Its important to treat any co-existing B12 deficiency at same time as treating a folate deficiency. See Management section in next link for more info.

patient.info/doctor/folate-...

Hopefully the colo team will be able to help you find answers. B12 deficiency can be linked to conditions that affect the gut. Some are listed in this link.

b12deficiency.info/what-are...

"Recently I've been all over the place falling over etc and not being able to stop my body from falling over!"

Neurologists

With possible neurological symptoms are you going to see a neurologist? B12 deficiency can lead to balance problems.

I saw quite a few neuros , only one had a reasonable knowledge of B12 deficiency so if you do see a neuro, go well-prepared and take someone with you.

Hopefully they will carry out neuro tests with your eyes closed that check how good your balance is and also something called proprioception( I think it means awareness of body in space). People with b12 deficiency sometimes have problems with proprioception. I did. I used to lose balance if someone walked directly towards me because I could not see all my surroundings.

There are stories on Martyn hooper's blog about younger people with PA/B12 deficiency

martynhooper.com/

martynhooper.com/2015/08/20...

2 likes

-___-

in reply to Sleepybunny

2 years ago

That link on writing a letter is brilliant- thank you! I will certainly write to my GP (and perhaps get my mum to write as well) and book a follow up appointment around the time of my last injections to see if I should be getting a sixth, or potentially more for neurological symptom treatment.

I've never eaten raw or undercooked fish (never raw, certainly not undercooked to my knowledge). So don't think this is it and I don't have raised eosinophils (in fact mine were lower than the acceptable range).

Doctor said folate is low but on the range number so she suggested I supplement this myself.

I'm hoping and praying the colo team will find some answers! Unfortunately the appointment isn't until the end of March but hopefully it'll be worth the wait.

I'll have a look in the thyroid forum and see what they say- from what I understand there are many more thyroid markers available so perhaps these would be good to have done especially as I am cold all of the time, even when others are boiling hot. As I understand this is a symptom of hypo? (And potentially anemia but I'm not sure if I've remembered that correctly!)

I will mention the possibility of seeing a neurologist in my letter and at my next appointment, it hasn't been suggested but I would rather be checked if my GP agrees to ensure everything is okay.

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