I’m new to PA and all the information on this group has been incredibly helpful. I have a question about the progress of peripheral neuropathy - can the pain decrease as the condition increases?
My illness started with heart palpitations and extreme fatigue in October last year. In January I started to feel pins and needles in my hands and feet. That progressed to become pain. By last week my feet felt permanently bruised, with some burning sensations. My hands also felt permanently achy with increased sensitivity to any knocks, pressure, heat and cold. On Sunday that pain started to reduce and has felt progressively better over the last few days.
My very low levels of B12 were discovered just over a month ago and my GP immediately put me on Cyanocobalamin tablets - 50mcg twice a day - while we investigated possible causes. As far as I could tell these did very little for me and she’s agreed to give me injections starting next week. In the mean time we have ruled out coeliac disease and helicobacter. I’m waiting on the result of the IF antibody test. I’m not vegetarian or vegan and have no reason to think my diet is deficient in B12. I haven’t been shown my full results but the GP says my folate and iron levels are “normal”.
My question is: is it possible that after a months the cyanocobalamin tablets are beginning to work? Or does the progress of peripheral neuropathy ebb and flow?
Thanks for your help!
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that isn't quite true - 1% of B12 is absorbed outside the ileum. This means that very high doses taken orally can result in enough B12 getting through. Its unlikely to be a practical means of correcting a significant deficiency because it will be very slow but there have been a lot of studies - including one large scale study - that have shown that very high dose oral can be quite effective as a maintenance regime and may be preferred by a large number of patients. Unfortunately though it doesn't work for all patients and the reasons for that aren't clear.
I agree with Hidden that getting copies of test results is a good idea. In relation to B12 deficiency, I look particularly at b12, folate, ferritin and full blood count.
"GP says my folate and iron levels are “normal”."
Sad to say my trust was affected when I was told everything was normal and I found abnormal and borderline results on copies of test results. These days I always get copies.
"we have ruled out coeliac disease and helicobacter"
What tests did you have for Coeliac disease? I found that in UK, GPs don't always order both first line tests recommended in NICE guidelines. If you've not had total IgA test then I don't see how GPs can rule out Coeliac disease.
In UK, two first line tests are recommended.
1) tTG IgA
2) Total IgA
My experience is that Total IgA test is not always done but I think it's an important test as people with IgA deficiency will need different tests for Coeliac disease.
Has diet been ruled out as a possibility of cause of B12 deficiency? Do you eat plenty of B12 rich food eg meat, fish, shellfish, eggs, dairy, foods fortified with B12?
If yes to eating plenty of b12 rich food then diet as a cause is less likely and more likely that there is an absorption problem.
Parasites/Fish Tapeworm
Have you ever eaten raw or undercooked fish? Fish tapeworm infection can lead to severe b12 deficiency.
Does the progress of peripheral neuropathy ebb and flow?
Have you seen a neurologist? Hopefully they could answer this question.
NICE CKS link below suggests that GPs should seek advice from a haematologist for patients with b12 deficiency with neuro symptoms. Has GP contacted a haematologist? Have you been referred to a haematologist?
With neuro symptoms and very low levels of B12, I'm surprised you were not put straight on to injections.
My understanding is that in UK, oral cyanocobalamin is only given for proven dietary deficiency (see BSH Cobalamin guidelines) . My understanding is that for other causes of B12 deficiency, injections are recommended.
For a patient with b12 deficiency with neuro symptoms, following pattern of treatment is recommended, whatever the cause of B12 deficiency........
A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months.
A lot of UK people on forum get following standard pattern of treatment....
6 B12 loading jabs over 2 weeks followed by a jab every 3 months
Neuro Consequences of B12 deficiency
Untreated or under treated B12 deficiency can lead to further deterioration including spinal problems so it's vital to get correct treatment as soon as possible.
"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 UK b12 guidelines.
"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.
PAS (Pernicious Anaemia Society)
If you suspect PA then may be worth joining and talking to PAS. They can offer support and info and in some cases may be able to intervene on behalf of PAS members.
"I’m waiting on the result of the IF antibody test"
I hope GP is aware that it is possible to have a negative/normal range result in IFA test and still have PA. See flowchart link above which outlines when PA and Antibody Negative PA can be diagnosed in UK.
There are many possible not-dietary causes of B12 deficiency. See Risk factors links.
Link about What to do next if b12 deficiency is suspected
My feeling is that in UK, B12 deficiency is not always as well-understood as it could be so it pays to do some B12 homework in case GP/specialist has not done theirs.
Thanks for your replies. I’ve requested a hard copy of the results from the GP.
Everything I’ve read here made me think it was unlikely that the tablets had done much, so I was surprised when I started feeling a bit better. There are so many factors at play, I suppose it could be down to any number of things. I’m just glad I can finally start loading doses next week - is it weird to be looking forward to injections?
Thanks again for all the info. It makes so much difference to be able to educate myself on the condition.
It's not weird to look forward to injections. I was excited when I finally got B12 as I felt some hope for the first time in years.
Before you start loading doses next week, I hope your GP checks their copy of BNF Chapter 9 Section 1.2 and sees that loading doses for someone with neuro symptoms should be every other day for as long as symptoms continue to get better (could mean weeks even months of loading doses).
If they only give you 6 loading doses over 2 weeks followed by a jab every 3 months then they have put you on standard treatment which might not to be enough to prevent further deterioration in my personal opinion, for someone with neuro symptoms.
If GP surgery put you on standard level of treatment, might be worth
1) Writing a letter pointing out, neuro symptoms, potential consequence of under treatment of b12 deficiency with neuro symptoms and including extracts from BNF, BSH CObalamin guidelines etc that support need for neurological treatment regime.
Link below is about writing letters about Under Treatment of B12 deficiency with neuro symptoms.
2) Joining and contacting PAS who can pass on useful info.
"I’ve requested a hard copy of the results "
Good idea.
If you look at results for full blood count (FBC), check MCV result. High MCV can be found in B12 deficiency and folate deficiency and indicates the possibility of macrocytosis (enlarged red blood cells).
The picture may be complicated if a person also has low iron as this can lead to microcytosis (small red blood cells). The effects of low iron may mask the effects of low B12 /low folate. A person with both low iron and low B12/low folate may appear to have normal range MCV.
If a person has both low iron and low B12,low folate it may be worth asking for a blood film (also known as blood smear). A blood film may show up both macrocytic and microcytic cells in someone with both low iron and low b12 and/or low folate.
I hope you get results for ferritin (or other forms of iron in body), folate, B12 and full blood count.
Also worth looking at RDW (Red Blood Cell Distribution Width) on Full Blood Count.
If RDW is increased then this can indicate red blood cells of a wide range of sizes which may indicate possibility of microcytosis and macrocytosis.
I hope you are able to update the forum on how you get on with treatment and if you get a confirmed diagnosis of PA. If you do, it may be worth putting update in a new thread as posts on older threads sometimes do not get noticed.
Thanks for all the tips. I’m seeing the GP for what I suspect she thinks is the last of the 6 jabs. I plan to go armed with the information you’ve linked to.
"for what I suspect she thinks is the last of the 6 jabs"
So you have been put on the standard pattern of treatment not the neurological treatment pattern. I feel concerned on your behalf.
Would suggest joining and talking to PAS before appt. as they may be able to suggest info you can show your GP.
Have you considered writing a letter addressed to GP containing info you want her to see and handing it into surgery before appt? I think letters should be as brief and polite as possible. This would give GP time to check info and would avoid confrontation...some GPs find it difficult to cope with assertive patients.
My understanding is that in UK, letters to GPs are filed with a patient's medical records so are a record of issues raised. A word of warning...some Gps may be irritated by letters so possible GP/patients relationship may be affected.
Link in my post above has letter templates with suggestions on what to write to GP if not getting recommended treatment for b12 deficiency with neuro symptoms.
There is a useful summary of b12 documents in third pinned post. lots of useful articles available to PAS members on website.
Thanks. I’d prefer to start with a face-to-face conversation. My GP is generally quite amenable - and she was aware of the issues with the IF test. I’m hopeful that she’ll go with the BNF guidelines when they are put in front of her. But it’s very useful to have a back up plan. I’m determined that I will get the treatment I need, even if ultimately I have to get the B12 ampoules from Germany and do it myself.
"hopeful that she’ll go with the BNF guidelines when they are put in front of her"
I'd also suggest having a copy of BSH Cobalamin and Folate Guidelines with you. BNF concentrates on PA and macrocytic anaemias and not everyone with B12 deficiency has macrocytosis.
BSH Cobalamin and Folate Guidelines is clearer that neurological treatment regime applies to any cause of B12 deficiency where neuro symptoms are present. Treatment info is about a quarter through BSH guidelines.
"she was aware of the issues with the IF test"
Does she know about Antibody Negative PA? Process for diagnosis of PA and Antibody Negative PA in UK is outlined in flowchart below.
Saw this post on Martyn Hooper's blog that I thought might be of interest. It mentions a useful PAS document called 'An Update for Medical Professionals: Diagnosis and Treatment’. You would need to be a PAS member to access the document.
I also was told everything was normal by my family doctor but subsequently went to see a naturopath who told me my b12 should be 4-5 times what it was and my ferritin should be 2-3 times what it was. Folate wasn’t even tested. So - best to get a copy, post here and ask these kind and knowledgeable people for help. I was also put on sublinguals and saw no improvement in my symptoms. Good luck!!
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