GP stopped my injections and referred me to the neurologist. How long before I can have another B12 test?

After thinking that my GP was great to acknowledge the fact that I need B12 shots every other day till no further improvement of my neurological symptoms, he is now saying that after talking to a neurologist, he is not convinced that B12 is the reason for my neurological symptoms and he is happily referring me to a neurologist. When I asked what are the possible causes for the pins & needles in my left arm & leg and the fact that it feels as if my left side is going to be paralysed, he had no answer (!). I said that I believe it is B12 because I can see the clinical response, again he didn't say anything and I believe he was probably thinking but did not dare say that everything is in my mind and I am probably a neurotic patient.

Now who knows how long it will take to have my appointment with the neurologist, who knows what he has written in his referral letter ( will the neurologist take me seriously if he has said that I am neurotic and I have probably googled my symptoms? something like this was implied last year)

I have had 18 injections so far and according to my GP he was advised by the neurologist that I have so much B12 in my body by now that I certainly don't need any more..that the B12 is enough to heal any damage and it will sustain me for several months. Now, has he suggested another B12 test? No! Has he suggested looking into why I was B12 deficient in the first place? No! Last February, I had an IF test, which came back as Normal ( not positive or negative) and that was enough for them to say ( and I quote the GP) that there is no problem with my gut and my gut can absorb the B12 - so, I had to eat more food rich in B12. When I tried to argue that I do eat lots of food rich in B12,the GP advised me to cook the meat less. Little did I know then to reply that the B12 is a vitamin that doesn't get destroyed by cooking.

I have now decided that I need to take the Active B12 test privately but how long should I wait before the result is not skewed by my 18 injections?

Do you know if the neurologist can investigate the causes of B12 deficiency? Should I be referred to a haematologist? I don't think my GP will be happy to refer me to a haematologist anyway...

I know I will probably have to SI but I don't want to jeopardise my appointment with the neurologist and skew any blood tests. On the other hand, I don't know how I will cope with the numbness in my left arm & leg.

Thank you for your help and ... Merry Christmas!

Vickyx

18 Replies

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  • Your GP is correct to say that your neuropathy may not be due to a B12 deficiency. There are many possible causes and the neurologist will need to do various tests to determine what can be eliminated as a cause.

    My neurologist says that the timing rules out B12 as the cause of my neuropathy. I started B12 jabs in June and the neuropathy only started being bad in December.

    Your GP is wrong to assume there's no absorption problem purely based on a negative IFAB test. Ask to see a gastroenterologist to look for signs of gastric atrophy. That, in combination with low B12, should be enough to diagnose PA.

    An 'active' B12 test will be affected by your injections. Three months is the recommended 'drying-out' period.

  • But my neuropathy came before finding out that my B12 was low ( 165) and it became better after I had the injections.

    Three months? wow... I have a long wait ahead of me then....

  • Hi Vicky B12.... have you had any improvement at all since you started injections, also do you know what your serum B12 levels were before injections?

    Your GP should send you a copy of the letter to the neurologist if not you can request a copy via the receptionist at your surgery... a copy of your blood test results is also very useful. You can post them on here if you need help with them.

  • Yes, the improvement was great - first of all I managed to get decent sleep. before I had insomnia and when I did go to sleep, I woke up many times during the night because of the numbness in my arms and leg.it felt as if someone was holding me VERY tight.

    Re serum levels, I had 190 in 2012. My GP at the time was alerted to the fact that as a Hashimoto patient, I might have Pernicious anaemia and he sent my blood results to a haematologist. I was then advised that as there were no haematological changes, I didn't have pernicious anaemia and my B12 was normal. No further investigations were carried out. Last January, I started having pain in my left arm & pins and needles. I also felt tired and had heart palpitations. I went to see my GP and she said I had a lump ( with the possibility of being cancerous!) and the lump was affecting my nerves. She also checked my TSH and I also asked her to check my B12, which was 165. She then checked the IF,w which was normal and advised me to eat more food rich in B12. After a few months wait and terrible pain ( I was literally sleep deprived!) , the scan showed I had a blood clot and then they said that the clot was affecting my nerves. I wasn't referred to a neurologist and no connection between low B12 and neurological symptoms was made. At the end of May I managed to convince my GP that perhaps B12 injections might help and he prescribed the first 6 loading dose. I can't even begin to describe the difference they made but 1 month and a half later the pain came back! I waited for the next B12, which was like giving a thirsty woman a sip of water! I could feel I needed more. A month later I saw another GP, who probably not convinced I needed any more B12, she ordered for another test. So after 7 injections in 4 months, my B12 was 325 and my ferritin & folate were very low, too. I have also supplemented with B12 patches and I had some liquid iron.

    I didn't know I can ask a copy of the referral letter. Thank you for letting me know.

    Thank you all for your help so much!

  • "I said that I believe it is B12 because I can see the clinical response, again he didn't say anything "

    In past I have sometimes followed up discussions with GP with a letter to them so there is a record of what was discussed as I'm not sure GPs can remember everything. My understanding is that letters have to be filed with a person's medical notes.

    Have you thought about speaking to PAS (Pernicious Anaemia Society)?

    pernicious-anaemia-society....

    PAS tel no +44 (0)1656 769 717

    Is your GP aware of the BCSH Cobalamin and Folate Guidelines which mention when Antibody Negative PA can be diagnosed (PA where IFA, Intrinsic Factor Antibody test, is negative)?

    I gave my GPs a copy of BCSH Cobalamin guidelines because they didn't seem to know about them. I also gave them a copy of Martyn hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"

    b-s-h.org.uk/guidelines/ click on box that says "Diagnosis of B12 and Folate deficiency" think the document is on page 3 or put "cobalamin and folate guidelines" in search box.

    Link to flowchart in BCSH Cobalamin guidelines that mentions when to diagnose Antibody Negative PA.

    stichtingb12tekort.nl/weten...

    It's made clear in recent UK documents that peopel who are symptomatic for b12 deficiency should be treated even if b12 level is normal range. See

    1) BCSH Cobalamin and Folate Guidelines

    2) BMJ B12 article

    bmj.com/content/349/bmj.g5226

    3) UK NEQAS statement

    archive.is/hbPHE

    Unhappy with treatment?

    b12deficiency.info/b12-writ...

    citizensadvice.org.uk/healt...

    HDA patient care trust

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

    hdapatientcaretrust.com/

    I found the summary fbirder wrote useful. lots of quotes from mainly UK B12 documents. Handy if GPs have not done homework on B12 deficiency.

    Link to his summary in third pinned post (last link in list).

  • Oh, yes he is aware of all the guidelines and I wrote a letter accompanied by all the documents prepared by the Pernicious Anaemia society & B12 deficiency group. This is why he agreed that I was going to have 1 injection every other day till no further improvement of the symptoms. But the nurses ( one in particular) were very negative about me having injections and every time I was stressed because I had to explain why I need more and it was obvious that they didn't know that patients with neurological symptoms need more B12. And they kept asking me: Really? Have you seen a difference? Because the patients say they see no difference!

    Thank you for the extra information! I didn't know about the charity.

    Vickyx

  • "Your GP should send you a copy of the letter to the neurologist if not you can request a copy via the receptionist at your surgery"

    People should also be able to access copies of letters sent by neurologists to GPs as well. Can be helpful to see what has been said. Should also be possible to see hospital records linked to seeing neuros but it's more difficult to access hospital records. May involve form filling or formal written request and visit to hospital records office.

    nhs.uk/NHSEngland/thenhs/re...

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

  • This is great! Thank you so much! I went to the A&E last April because I couldn't breathe and I felt as if I was going to faint. They said the symptoms showed panic attack. I would like to access a copy of the tests done in the hospital because I remember one of the doctors saying that ( I think) Holo was high and it was because of the blood clot. I am now wondering whether the holo was high due to B12 deficiency. I can't believe it was a mere coincidence that the blood clot appeared the same time with the neurological symptoms and B12 being 160.

  • VickyB12, if your symptoms begin to improve with B12 injections, then you are clearly deficient in B12 and need more of it. Don't let your GP fob you off.

    As for malabsorption, be aware that you may have this even if tests do not show it. People with PA/B12D don't necessarily show evidence of gastric atrophy with endoscopy or barium contrast - I didn't, but I still need to take betaine HCl with meals, and I have confirmed antibody positive PA. Some people benefit from drinking lime juice or cider vinegar in water with their meals, but I've never found it effective personally.

    If all else fails, you may have to consider self-treatment to recover your health and forestall any further damage.

  • You may have to diy injections. Dr's and Consultants seem increasingly to ignore all vitamin treatment

  • Hi Vicky,

    I wondered if you had ever had a homocysteine test? I read that high levels of homocysteine can be linked to an increased risk of blood clots. Homocysteine levels may rise if B12 levels are low.

    labtestsonline.org.uk/under...

    If you are already supplementing with b12, results of a homocysteine test may be affected.

    b12deficiency.info/b12-test...

    I am not a medic just a person who has struggled to get a diagnosis.

  • Thank you, No, I haven't had a test and I have also read that homocycteine levels rise because of low B12 and that is why I think the blood clot was a result of the B12. I think I mentioned Holo in another post, sorry I should have said Homocysteine - when I went to A&E last May, with symptoms of B12 def, I am almost 99% certain that one of the doctors said that a blood test was high because of the blood clot - that is why I am going to look into how I can get hold of my blood results when in A&E.

    Festive wishes,

  • I find really disturbing that, although your GP is prepared to refer you to a neurologist, he is stopping B12 injections especially as, looking at your history in past posts, you have serious symptoms of B12 including numbness. If, as you already suspect, your doctor is not taking your symptoms seriously I personally would consider self injection as soon as possible.

    In the meantime, your GP/neurologist may not be aware that:

    * deficiencies begin to appear in the cerebral spinal fluid below 550Pg/ml.

    * you are in another high risk category, e.g. **Hashimoto's Autoimmune disease.

    *. hydrochloric acid diminishes from around 60 years of age and will make for difficult absorption from diet alone.

    It would be a good idea then to again write or go back armed with your list of symptoms and information, take someone close to you for support to ensure that injections are reinstated, and emphasise that the longer your symptoms are left untreated, the greater the risk of permanent damage.

    For the neurologist and GP:

    cmim.org/pdf2014/funcion.ph...

    The above latest UK research document has a useful summary and important information re. blood tests - bottom of page 4 under 'how is response to treatment assessed':

    "Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment,24 and retesting is not usually required."

    ............

    **Hashimoto's and PA, both autoimmune, have many symptoms overlapping, and researchers believe the source is 'leaky gut', so following a gluten free diet usually helps.

  • Thank you Polaris... every bit of information I get is so helpful.. thank you all so much... The GP said that he is stopping the B12 injections because he was advised by the neurologist! The neurologist said that I must have so much B12 in my body after the 18 injections that it should be working to heal my nerves and it will last me for several months. I do believe that I need to start injecting but I am afraid I will jeopardise a proper assessment in the future and that if they don't hear from me again, they will think I was crazy and harassed them over nothing. But my health is more important and I certainly don't know how I am going to cope with the numbness in my left arm and leg. I know I need to make a decision soon. I can't tell them that I SI, can I? Will they refuse treatment?

    Festive wishes x

  • At the stage you're at Vicky, I would put myself and survival above anything else. In any case, how will they know you're self injecting, as they have already said you "have so much B12 in your blood and your body", so they are presumably not going to notice any more and you can still be assessed by the neurologist before or in case they test again! The BMJ and BCSH guidelines, as pointed out above, ought to convince then that a further serum test is not relevant as it won't show whether it is actually being absorbed - whether or not they take notice is another matter...

    Re. your IF test, I believe Martyn Hooper tested negative three times and would have probably ended up with further damage if he hadn't obtained his own injections. I hope this helps you decide what to do next.

    From the book, 'Could it be B12?', by Sally Pacholok and Dr. J. Stuart, a reminder perhaps not to be afraid to recruit extra support from the PAS or a close relative/friend when battling for continued injections:

    "Unfortunately, when it comes to B12 deficiency,....politeness can be fatal. In our own practices, we've seen dozens of people who were diagnosed as B12 deficient at some point in their lives but later allowed doctors to discontinue their treatment. Several paid a high price for this lack of assertiveness because they now have permanent neurological damage or dementia. Conversely, we know of patients with B12 deficiency who are alive and well today only because they, or an assertive family member insisted - sometimes in the face of significant resistance - on proper diagnosis and treatment."

    Very best wishes for better treatment Vicky x

  • Some people on the forum join the PAS.

    pernicious-anaemia-society....

    The PAS can sometimes intervene on behalf of members by writing letters...at the very least they can point out useful info. I'm guessing its easier for them to help people who have a definitive diagnosis of PA.

    There are stories on Martyn hooper's blog about how the PAS have helped people.

    martynhooper.com/2016/09/23...

  • After years of being ill (nearly 20) with typical symptoms of b12 deficiency (including neurological)but IFA test negative, I ended up self treating.

    I desperately wanted to avoid this but when I had had b12 deficiency diagnosed a few years ago, I only had one set of loading injections then nothing. I asked on several occasions for a further trial of B12 injections and raised the issue of possible B12 deficiency with neurologists, endos, rheumatologists but no luck.

    When I finally started to self treat, some of my neuro symptoms disappeared although some appear permanent. I wish so much I had found out about B12 deficiency years ago and not accepted my GPs view after the one set of loading doses that I was okay now because my B12 levels were in range.

    Causes of B12 deficiency

    It's possible for people to have more than one cause of b12 deficiency at the same time.

    b12deficiency.info/what-are...

    Had any surgery involving nitrous oxide?

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

    SACDS

    There is a document in the PAS library about Sub Acute Combined Degeneration of the Spinal Cord (SACDS) which is only accessible to members. I think I read that Martyn Hooper has SACDS. SACDS can occur in people who are b12 deficienct. I believe some members have given this document to their GPs.

    pernicious-anaemia-society....

    As Fbirder says there can be other causes of neuropathy besides B12 deficiency.

    Have you ever been tested for diabetes?

    diabetes.org.uk/

    For Coeliac disease?

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

    For thyroid problems?

    thyroiduk.org.uk/tuk/

    There's a very active Thyroid Uk forum on HU. Quite a few people on this forum also have thyroid problems.

    thyroiduk.org.uk/tuk/

    Do you have any blood relatives with PA or other auto-immune conditions?

    pernicious-anaemia-society....

  • You are so helpful and supportive... thank you so much... both my mother and I have Hashimoto. I asked my GP whether the neurological symptoms could be related to Hashimoto and he categorically denied any connection... not that he could give me any explanation at all.

    No, I haven't been tested for diabetes or Celiac. They only did the IF test, which came back as normal ( why not negative? everybody in the forum comment as the result being negative or positive?) and they didn't do the parietal cell antibodies.

    Everything started last January...it's almost a year now..

    Thank you and everybody who is trying to support me.

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