New to this forum and looking for your advice. I had neuropathy symptoms and a B12 level just above the minimum for normal B12. (182, normal range 180 to 900). The GP suggested a course of B12 injections (UK based). However instead of having the injections every other day until neuropathy symptoms go, I've had 5 loading doses. I did see improvements to my energy levels, less headaches and my legs felt stronger during the first 4 injections. However on my last injection the fatigue came back, and now one of my legs is feeling much weaker again. The neuropathy symptoms if anything got worse during the course of injections (more intense pins and needles in my legs) and are now levelling off again, but are no better than they were at the start. I have also developed a neck ache/grinding during the course of injections. Did anyone else experience this during their loading doses? Im worried its not B12 and something worse. Any help would be greatly appreciated.
B12 symptoms after loading doses - Pernicious Anaemi...
B12 symptoms after loading doses
Hi bzvvvd
According to the N.I.C.E guidelines on loading doses they should continue "until there is no further improvement" so I think you should mention this to your doctor or nurse when you attend for your sixth one.
The guidelines are 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...
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.
It is also important that your Folate level is monitored as this is essential to process the B12.
There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.
Symptoms of a folate deficiency can include:
symptoms related to anaemia
reduced sense of taste
diarrhoea
numbness and tingling in the feet and hands
muscle weakness
depression
Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.
Initially, replacing B12 will lead to a huge increase in the production of blood cells and platelets (which occurs in the bone marrow) and can lead to rapid depletion of folate and iron stores; this can then limit the expected recovery of Haemoglobin.
perthhaematology.com.au/B12...
See "Therapy" at the bottom of page three.
I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 46 years.
I wish you well.
Hi,
"However instead of having the injections every other day until neuropathy symptoms go, I've had 5 loading doses. "
What B12 treatment is GP planning to give you after loading doses?
If you're in UK and the answer is no more treatment or just maintenance B12 jabs every 3 months then my understanding (I'm not medically trained) of current UK B12 guidelines is that GP is not following the guidance on treating B12 deficiency where neuro symptoms are present.
Symptoms of B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/signs-an...
UK recommended B12 treatment for patients without neuro symptoms is ......
6 B12 loading jabs followed by a jab every 2 or 3 months.
UK recommended B12 treatment for patients WITH neuro symptoms is ......
A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months.
Local Guidelines
Some areas of UK are using outdated guidelines for B12 deficiency. Might be worth tracking down the guidelines for your local area and comparing them with national guidelines.
Some areas of UK only give 5 loading doses. BNF link recommends 6 for those without neuro symptoms and every other day loading injections for those with neuro symptoms.
If you're in UK, I suggest reading all the following documents. Sadly B12 deficiency is not always well understood by some GPs and specialists.
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 when PA and Antibody Negative PA can be diagnosed in UK. Has GP followed diagnostic process on flowchart?
BMJ B12 article
Emphasises need to treat people who have B12 deficiency symptoms even if B12 level is within range.
BNF
bnf.nice.org.uk/drug/hydrox...
If in UK, GP may not know that BNF guidelines on treatment of B12 deficiency have changed recently.
pernicious-anaemia-society....
NICE CKS
cks.nice.org.uk/anaemia-b12...
Link above suggests that GPs should seek advice from a haematologist for patients with B12 deficiency with neuro symptoms. Has GP done this?
What does GP think has caused your low normal result for B12?
Has GP excluded following possible causes?
1) Diet
Do you eat plenty of B12 rich food eg meat, fish, shellfish, dairy, eggs, foods fortified with B12?
If yes, then B12 result at bottom end of normal range becomes less likely to be due to diet and more likely to be due to an absorption problem in gut.
2) PA (Pernicious Anaemia)
In UK, test for PA is an Intrinsic Factor Antibody test (IFA). Have you had this test?
IFA test is not always reliable and it is still possible to have PA even if IFA result is negative.
3) H Pylori infection
patient.info/health/dyspeps...
4) Internal parasites eg fish tapeworm
One potential sign of fish tapeworm infection is an increase in eosinophils, a type of white blood cell. Eosinophil result can be found on results of Full Blood Count test.
Fish tapeworm infection can be picked up from eating raw or under cooked fish.
5) Coeliac disease
NICE guidelines link below recommends that anyone with unexplained B12, folate or iron deficiency should be tested for Coeliac disease. Two tests are recommended but UK GPs often only do one
a) tTG IgA
b) Total IgA
If you were tested , did you have both tests?
NICE guidelines Coeliac Disease (2015 version)
nice.org.uk/guidance/ng20/c...
Coeliac Blood Tests
coeliac.org.uk/coeliac-dise...
6) Nitrous Oxide
gov.uk/drug-safety-update/n...
There are other many risk factors for/causes of B12 deficiency.
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
Best piece of advice I ever got was to always get copies of all my blood test results. In relation to B12 deficiency, I look particularly at B12, Folate, Ferritin (or other iron test) and Full Blood Count (FBC) results. There can be useful clues on FBC.
Access to medical records (UK)
nhs.uk/using-the-nhs/about-...
Link mentions online access. My understanding is that you can also ask to view paper records. Process may vary in different parts of UK.
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...
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 is up to date with most UK b12 guidelines but does not include recent change in BNF .
"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".
If you think PA is a possibility then may be worth joining and talking to PAS. Some info on PAS website is relevant to other causes of B12 deficiency.
Getting a PA diagnosis can take years in some cases.
PAS (Pernicious Anaemia Society)
Based in Wales, UK. Offers support and info about PA.
pernicious-anaemia-society....
PAS tel no +44 (0)1656 769717 answerphone
PAS support groups in UK
pernicious-anaemia-society....
May be a group close to you.
Blog post from Martyn Hooper's blog that shows how PAS can support those seeking PA diagnosis.
martynhooper.com/2017/06/24...
B12 Deficiency Info website
B12d.org holds support meetings near Durham.
UK B12 Blogs
Martyn Hooper's blog about PA
B12 Deficiency Info blog
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Point 1 in above link is about under treatment of B12 deficiency with neuro symptoms.
CAB NHS Complaints
citizensadvice.org.uk/healt...
HDA patient care trust
UK charity that offers free second opinions on medical diagnoses and medical treatment. They use a network of UK specialist doctors.
Consequences
It is vital to get recommended level of treatment or consequences can be severe. Many forum members find that even if they get recommended UK treatment it is not enough for them.
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.
Blog post from Martyn Hooper's blog, mentions SACD
martynhooper.com/2010/09/21...
Other Referrals
1) Neurologist
If you have neuro symptoms, have you been referred to a neurologist?
There are many causes of neuro symptoms besides B12 deficiency. I warn you again that B12 deficiency is not always well understood by specialists including neurologists. I speak from personal experience.
Be well prepared for any specialist appointments.
2) Gastro-enterologist
Do you have any gut symptoms?
Gastro specialist hopefully would pick up signs of gut damage from PA, H Pylori, Coeliac etc.
3) Haematologist
See NICE CKS link.
Caution
Some GPs and specialists find it difficult to cope with an assertive patient. Be prepared for GP/patient relationship deteriorating.
May be worth taking a supportive person with you to appointments, even better if they have read about B12 deficiency. It's my impression that GPs and specialists can be kinder if a witness is present.
More B12 info in pinned posts on this forum.
I am not medically trained.
Hi, I am experiencing almost identical reactions. I am on every other day injections for my 5th week and have pins and needles (still though not so bad) in my lower legs/ feet and neck and shoulder pain. Some of my symptoms such as tinnitus have waned significantly and my energy levels come and go. My digestion is improving (I think!) I have however been deficient for at least 10 years - it was not picked up correctly all those years ago.
Good luck with your treatment, I wish you well.
Hi,
I also wondered if you live in Gloucestershire bzvvvd ?
There are other UK areas besides Gloucestershire that only give 5 loading doses.
Hi, thank you all for your responses. Lots of bedtime reading for when I can't sleep :). I have my follow up appointment with the GP this week and will certainly chase up why I am not having injections every two days with regard to the neuropathy symptoms. The GP hasn't given me any information regarding follow up treatment yet, I am hoping those details will be provided this week. As to possible causes of the B12 deficiency or referral to a haematologist or neurologist, again there has been no discussion of this, yet. However thanks to your responses I can now go in far more prepared then I ever would have been. I live in Swansea.
"I have my follow up appointment with the GP this week"
Might be worth sending a brief, polite letter to GP prior to next appt. or as a follow-up. It could contain symptoms, test results, relevant family history (any blood relatives with PA, Coeliac, other auto-immune etc), extracts from relevant UK B12 documents.
In UK, letters to GP are supposed to be filed with patient's medical records. Letters avoid face to face confrontation and if they reach GP before appt give GP chance to do some B12 homework.
"As to possible causes of the B12 deficiency or referral to a haematologist or neurologist, again there has been no discussion of this."
UK test for PA is an Intrinsic factor Antibody test (IFA). IFA test is not always reliable and it is still possible to have PA even if IFA results are negative.
Flowchart link in my first post outlines UK diagnostic process for PA. Has GP followed this process?
You're within your rights to request a referral but GP does not have to agree. I put referral requests in brief, polite letters to GP along with evidence I felt supported request.
If GP won't refer you, you could contact HDA patient care trust (link in first post) to see if they can help. They use a network of UK specialists. Have you considered going private?
Paying for private consultation is no guarantee of better treatment, I speak from personal experience. Ignorance about B12 deficiency exists in NHS and private sector.
GP/patient relationship may be put under strain if you are assertive. I think you have to weigh up risks of not being treated adequately against risk of upsetting GP.
Some forum members take a supportive friend/relative to appts. It's my impression that GPs/specialists are sometimes kinder if a witness is present.
"I live in Swansea"
The PAS office is in Bridgend. If you join PAS you might be able to speak to them before next appt and they could tell you more about diagnosis of PA.
Blog post about how PAS can support those seeking PA diagnosis.
martynhooper.com/2017/06/24...
There are two PAS support groups in Wales.
Halfway through loading doses feeling unwell
Coping after 2weeks loading injections
B12 loading doses
B12 loading doses query 
