Unsure I’m getting the right treatment for B12 deficiency

[Pheonixnite]

Hi all. I’ve recently been diagnosed with B12 deficiency but without pernicious anaemia. My B12 level is currently 101 but my doctor has told me that’s normal. I having one shot of B12 on Monday to top me up in the words of the doctor. I’m having neurological symptoms and I’m seeing a neurologist who has instructed my doctor to treat me for B12. Can you please help me understand what treatment I should be receiving as the doctor is dismissing it as I don’t have the anaemia but I have a lot of other ones including tiredness, numbness, blurred vision and anxiety. I also asked for a coeliac test due to most of my family members having it for years. Many thanks in advance

[VaishaliG]

Hello Pheonixnite, a B12 level of 101 is very low and should not be taken so lightly by the doctors, especially with you having neurological symptoms. My B12 was 134 and I was started with injections one per week for 5 weeks. My fatigues and weakness has reduced a lot but still some weakness in legs is there. Kindly request your doctor to give you more frequent injections. The other members on this forum will definitely suggest you what to do next and soon. Wish you the best

[wedgewood]

So what tests have you had that tell you that you do not have Pernicious Anaemia? That if the first question .

[Pheonixnite in reply to wedgewood]

I don’t know- when I went to my doctor to get my results, she just said I didnt have anaemia. I just want answers to why I feel so bad and I feel like they are not listening to me

[fbirder]

hey.nhs.uk/wp/wp-content/up...

[clivealive Forum Support]

Has your Folate level been checked Pheonixnite ?

[Pheonixnite in reply to clivealive]

To be honest I don’t know. I had to beg them for my B12 level which they claim is normal. They are trying to give me as little info as they can

[clivealive Forum Support in reply to Pheonixnite]

Were you able to read the document linked above? Page 5 deals with Treatment for B12 deficiency and page 8 deals with Folate Deficiency and these are NHS guidelines your doctor should be following.

Alternatively make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

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 (a form of B12 deficiency) for more than 46 years.

I wish you well.

[Pheonixnite in reply to clivealive]

Thank you. You have been very helpful. I’m trying to stay calm but it’s making me quite tearful.

[clivealive Forum Support in reply to Pheonixnite]

You are not on your own Pheonixnite as there are a lot of very helpful and experienced people on here and as Hidden suggests get hold of your test results and show them on here.

Are you able to print any of the information that's been suggested?

Can you contact the neurologist you saw and ask him to instruct your doctor?

Please do not be too distressed for if push comes to shove you may be able to do as so many other on here and that is to self inject. But let's get your G.P. sorted first because if you can "educate" him you will help his next patient who comes along with the same problem.

Goodnight for now.

[Foggyme Administrator]

Pheonixnite. Your doctor is wrong. And offering one injection of vitamin B12 'to top you up' is ridiculous nonsense, not treatment.

First, you don't give the reference range for your B12 result (the two figures in brackets after the result) but nevertheless, a level of 101 is very very low and likely to be well below whatever reference range the lab used - you have a proven case of B12 deficiency. You also have a neurologist who has asked your GP to treat you for B12 deficiency. You have the symptoms of B12 deficiency - including neurological symptoms. What on earth is your GP waiting for!

Your GP is obviously not aware that B12 deficiency can exist without haematological changes - that is, without having macrocytic anaemia:

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

Here's more information about things your GP is unlikely to know:

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

You can have B12 deficient without having Pernicious Anaemia - lots of other causes (Coelic disease being just one...there are many others).

Treatment you should be receiving: because you have neurolgical symptoms you should receive the intensive regime of B12 treatment (your GP may not have heard of this). You should have 6 x 1mg injections of Hydroxocobalamin given on alternate days (the loading doses) and then continue with injections every other day until there is no further improvement (sometimes for many months). Once you are sure that your symptoms are not improving, thismthen reverts to an injection every eight weeks (that’s not enough for some people - but that’s a 'story' for another day).

Details of this intensive B12 treatment regime can be found in a book called the BNF (prescribing guidelines for GP - there will be one on the doctors desk). The BNF describes this regime as treatment for pernicious anaemia (with neurological,symptoms) so your GP may try to fob you off by saying - ah ha, you don't have PA, so you don't need this. WRONG. Why...

1. Because the treatment for pernicious anaemia is treatment for the B12 deficieny it causes. So the treatment for B12 deficiency is the same - whatever the B12 deficiency is caused by (and as above, many causes, not just PA). Also note - treatment for those neurolgical symtpoms is about the third paragraph down - you may have to,point that out to your GP because most don't read that far. Here's a link to the BNF so you can take a peek (and print to take to your GP):

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

(BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

2. There is no accurwt treat for PA. The anti-IF test (which I don't think you've had) is not reliable - 40%-60% of those with PA test negative for it, so,you can test negative and still have PA.

3. PA and B12 deficiency (with neurolgical,symptoms too) can be present in the absence of macrocytic anaemia.

4. One injection of B12 May putmyour levels back into the 'normal' range but it will not treat your defiance properly. Testing B12 levels after injections is meaningless - all thet's being measured is how much B12 has been injected. So tells you nothing about the efficacy of treatment. GP should treat according to symptoms, not serum B12 levels. Here's link to information about that:

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

These are the diagnostic and treatment criteria your GP should be following - in fact, what all doctors should be following - they'll help,you,to,understand what your GP should be do8ng for,you in terms of diagnosis (looking for the cause of your deficiency) and treatment (what you should be having right now).

onlinelibrary.wiley.com/doi... (British Committee for Standards in Haematology (BCSH) Guidelines for the Diagnosis and Treatment of Cobalamin and Folate Disorders)

When B12 deficiency presents with neurolgical symptoms all the guidelines state that treatment with B12 injections should begin immediately in order to prevent potentially irreversible neurological damage (something your GP is oblivious to, it seems). Failure to treat the deficiency (or under-treatment - your one proposed B12 Injection) can result in a neurolgical condition called subacute degeneration of the spinal cord, which cause neurolgical damage which may be irreversible. (noted in the BSCH guidelines in the link above, if your GP needs evidence). So...

Here's information about the importance of treating neurogical symptoms swiftly and appropriately:

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

Suggest you go back to your GP with some of the evidence above and ask to be treated in accordance with the guidelines for treatment of B12 deficiency with neurolgical symptoms - and in accordance with your neurologists request. You could point out that:

1. B12 deficiency can be present without evidence macrocytic Anaemia in a blood test

2. You have a proven B12 deficiency (your serum B12 blood results)

3. You have the symptoms of B12 deficiency - including neurogical symptoms, which all the guidelines state should be treated immediately

4 You would like to be treated in line with the BSCH and BNF guidelines for the treatment of B12 deficiency- the intensive regime of injections

5 Your neurologist has asked for you to be started on the treatment regime for B12 deficiency (with neurolgical symptoms)

6 You are concerned that if you do not receive treatment according the guidelines, you may be put at risk of developing subacute degeneration of the spinal cord (and about that, not suggesting you have it - just a case of making your GP aware that this exists. He probably won't know about this and it may sharpen his thinking a little...and encourage him to do what he should be doing - which is, starting you on the approprwtue B12 injection regime (as above).

7. One injection of vitamin B12 will not treat your deficiency appropriately - serum B12 levels are meaningless after injections. Treatment should be according to symptoms, not serum B12 levels (as per above)

So, go back to your GP and have the above conversation (print the documents to take as evidence). It may help if you can take someone with you to back you up and speak up on your behalf, if necessary. GPs are often more attentive and less hostile if there is a witness in the room. Sadly.

To give you courage...you have a serum B12 result that 'proves' you have B12 deficiency. You have the symptoms of B12 deficiency. The absence of macrocytic anaemia does not mean that you do not have PA. Nor does it mean that you do not have B12 deficiency. B12 deficiency has been confirmed by a neurologist, who has asked for you to be treated for it. Treatment is not one B12 injection (a shocking suggestion). In short...

Good grief, what on earth is your GP playing at.

If your GP still will not treat you, can you try a different GP in the practice? Or you could try putting treatment appeal/request in writing (more difficult to ignore) - copy the letter to the GP and the practice manager...and ask for an urgent response - also ask them if they are unable to offer treatment, please can they put that decision in writing and include evidence to,support that decision (they won't be able to, there isn't any).

May not be easy so you may have to be (politely) persistent.

Good luck, let’s us all know how it goes, ask if you need more help...and get a print out of your serum B12 results (your legal right, they cannot refuse).

Good luck 👍

[JoRR]

You've had some good advice here. Just to add - one of the things that can mask anaemia in FBC due to B12d is having iron anaemia at the same time. B12d can cause enlarged red blood cells, measured in full blood count as RBC distribution width. However, low iron (best shown in ferritin levels rather than serum iron - they may not have tested ferritin) causes small red blood cells. RBC distribution width takes an average, so you can get a 'normal' result despite very few of your red blood cells being the right size. Also, ferritin reference range is usually very large - being within range but at the bottom is not good. Here the range is something like 14-200, but really you need to be at least 80.

Also, once you hopefully get some B12 injections, please take folic acid supplements at the same time - B12 will not work without it and even if your folate is in range at the beginning it will probably plummet. Some people recommend taking 5mg daily while on alternate day injections, reducing that as / when injection frequency decreases. 5mg is *12* (approx) of the standard over the counter folic acid tablets sold for pregnancy. You can buy higher dose tablets online.