I just wanted to share my story with b12 so far and see if anyone might have any advice on the steps I can take from here.
I’ve been on an extended trip to India for the past year and a few months ago I’d noticed numbness in my left leg, tingling sensations, chest pains and heart palpitations, as well as feeling tired and anxious a lot of the time. I got all kinds of blood tests including thyroid which all came back fine, and eventually a b12 serum test just over a month ago showed I had a deficiency. My level was 136 pg/ml. My blood count also showed some mild anemia. The doctor there recommended I start injections as soon as possible, so as I was due to come home to the UK, I decided to wait, see my doctor and hopefully start a course of injections here.
While I was still in India, as a kind of insurance policy, I bought some b12 injections (mecobalamin 500mcg) over the counter as they were super cheap and I’d heard that sometimes in the UK it can be difficult to get treatment on the NHS. I also bought some b12 tablets (mecobalamin 500mcg) and began taking around 2 of those a day.
I saw the advanced nurse practitioner upon my return home (not possible to get a doctor’s appointment) who ordered a load of tests, which showed my b12 had risen up to 242 ng/l. All of my symptoms were still there. As my levels had now reached over 200, she said I wasn’t eligible for injections, and prescribed me a course of oral supplements for one month, with a plan to retest my b12 after that time.
When I picked up the tablets at the pharmacy, I realised she’d prescribed 50mcg. I’d been supplementing with 500mcg, 2 tablets per day, for a few weeks now, so I knew that the weak ones they’d prescribed wouldn’t do much for me at all. I went back the following day to request a stronger dose. At first the nurse was adamant that I should stop taking the stronger tablets from India, stick to her low 50mcg dose for one month, and then get retested. After some begging, she agreed to get advice from her own pharmacist, who later phoned me and said they would book me in for a loading dose of injections.
So I’ve had 3 injections over the past week and a half, and I’m due to go in for my 4th and final injection tomorrow. I’m not sure what the plan is after this, but I’m assuming they will now leave me for a month or so and then retest my b12 levels then.
Sometimes I think I’m feeling a little better in terms of energy levels since having the injections, but overall I’m still weak, still have chest pains and heart palpitations regularly and still have some numbness in my right leg.
Another thing to mention is that in India an Echocardiogram showed that I had mild pulmonary hypertension. I had an ECG on my return to the UK which showed some nonspecific abnormalities. I’ve been referred to a cardiologist, but my appointment isn’t until April. I’m trying not to worry too much about this, as I’m hoping that these chest pains/palpitations and maybe even the pulmonary hypertension, could all be related to B12. My hope is that once I’ve tacked the b12 issue, the heart issues will also settle down.
I guess right now I’m unsure of whether to follow the NHS’s pathway of seeing how I feel and how my b12 levels look in a month, or to start taking the stronger 500mcg oral supplements again and possibly even learn how to self inject with the injections I picked up in India. The thought of self injecting freaks me out a bit but I’d tackle my fears and go for it if I needed to.
I just want to feel well again, and I’m not sure if I should be taking matters into my own hands to do that.
I know a lot of other people on here have been through struggles with their GPs and getting the correct treatment, so I just wanted to reach out, share my story so far and see if anyone could throw some wisdom me way. Thank you
Written by
graciefac
To view profiles and participate in discussions please or .
Wow graciefac You've actually managed to achieve from the NHS, what many of us are refused, ie recognition of B12 deficiency. That's an achievement in itself? Well done - many of us will only be jealous LOL
I'm assuming you are not vegetarian/vegan, eat various meats including red meats (where we get most of our Vit B12 from) and perhaps eat foods fortified with B12 etc? Having taken oral tablets for a few weeks and your level has only risen such a small amount, I think this suggests you are unable to process and absorb B12 from your diet, hence the need for the injections.
I don't see anything about Folate levels in your post. I assume these were checked and were well within the normal range and not 'scraping along' the lower level? It is very important to ensure Folate levels are reasonable and not deficient before actually starting Vit B12 injections but, as you've started the injections of B12, it would still be worth checking. (Usually, B12 and Folate would be checked together)
So, I would suggest you continue with your 'Loading doses', which in UK should be 6 injections over 2 weeks. After that, according to NICE guidelines, you should continue with 3 x week regime until any neurology is no longer improving - cks.nice.org.uk/anaemia-b12...
Your B12 and Folate levels can be checked after a few weeks/months but this is just to check if your levels have responded. If your levels are high, ie +/- 2000, for instance, this is good BUT not a reason to stop injections. You will need injections, every 8 - 12 weeks (although some require far more frequent and usually get refusal from GP so end up self injecting to feel well). It has been known for some HCPs (Health Care Professionals) to stop injections once the level is shown to be improved, apparantly thinkinhg all will be well - but it won't. If you don't absorb B12, you never will as long as the causative factor still remains so it could be useful for you to have further tests to try to establish the cause. For example, for me, it seems I'm likely deficient due to taking Metformin and antacids (Ranitidine) or PPIs (Omeprazole, Lansoprazol etc) or various other medications known to potentially inhibit the absorption process.
So, these injections are for life, unless the cause is removed People having autoimmune issues causing B12 deficiency, then known as Pernicious Anaemia, will certainly need injections for life.
It can take a while before much significant improvement is felt but do stick with it. Sounds like your surgery/nurse are 'on the case' - lucky you
I wish you luck with getting the treatment you need.
I'll warn you that many on this forum find that GPs and specialists do not always have a good understanding of B12 deficiency so it pays to be well informed.
It can also help to take a supportive person with you to any appointments that might be challenging. Even better if person has read about B12 deficiency and understands what you are going through. GPs are sometimes kinder when there is a witness present.
If you suspect PA (Pernicious Anaemia) is a possibility then I recommend joining PAS (Pernicious Anaemia Society) who can guide you on helpful info to pass to your GP.
My understanding of current UK guidelines is that your GP should have tested you for PA and also for Coeliac disease.
"I realised she’d prescribed 50mcg"
This strength of B12 tablet is prescribed for dietary B12 deficiency in UK. Have your GPs assumed your B12 deficiency is due to your diet?
Do you eat plenty of B12 rich food eg meat, fish, eggs, dairy, foods fortified with B12?
If yes then B12 deficiency is less likely to be due to diet and more likely to be due to a gut absorption problem eg PA, Coeliac, H Pylori infection, fish tapeworm infection plus other possibilities.
A vegan or vegetarian diet can be a risk factor for developing B12 deficiency.
Might be worth typing out a typical weekly diet; food and drinks for GP.
Even if B12 deficiency is due to diet, in UK if neuro symptoms are present my understanding is that you should be on B12 injections.
"still have some numbness in my right leg"
Numbness is a neurological symptom.
What other neuro symptoms do you have?
Neurological symptoms include
tingling, numbness, pins and needles, burning sensations, insect crawling sensation, tinnitus, muscle twitches, muscle fasciculations, flickering eyelids, restless legs syndrome RLS, vertigo, clumsiness, dropping things, bumping into things, strange gait (unusual way of walking), word finding problems, balance issues, brainfog, proprioception problems (problems with awareness of body in space) etc.
In relation to B12 deficiency, GPs often look for signs of peripheral neuropathy PN especially signs of sensory neuropathy so worth mentioning signs of PN.
Make sure your GP/any specialist has a list of all your symptoms especially all your neuro symptoms.
If you have any neurological symptoms, you should be on following treatment pattern if in UK.
A B12 loading injection every other day for as long as symptoms continue to get better then a jab every 2 months.
There is not time limit on how long the every other day loading jabs can continue for, it could be weeks even months as long as improvement is continuing.
If no neuro symptoms present then in UK following treatment pattern is recommended.
6 B12 loading injections over 2 weeks followed by a jab every 2 or 3 months.
"So I’ve had 3 injections over the past week and a half, and I’m due to go in for my 4th and final injection tomorrow."
Assuming you're in UK, the pattern of treatment you have received does not match what is in UK guidelines.
I suspect you may be in an area of UK that has out of date local guidelines for treatment of B12 deficiency. I suggest you track down the guidelines for your area of UK and compare them with national guidelines/articles below.
UK B12 documents
I suggets reading all the documents/articles in this list.
I feel it is more effective to put queries about treatment into a letter to GP.
1) In UK, letters to GP are supposed to be filed with medical notes so therefore are less likely to be ignored.
2) Writing a letter can avoid face to face confrontation especially if GP/patient relationship is under strain.
3) Writing a letter creates a paper trail which can be useful evidence if there is cause for complaint in the future.
4) Letters could contain symptoms list, test results, personal and family medical history, extracts from UK documents/articles, requests for referrals etc.
Always keep copies of any letters you write. There may be some GPs who get irritated by receiving letters.
Best advice I ever got was to always get copies of all blood test results. Most UK GP surgeries have online access to a summary of medical records, some have access to complete medical records. Details will be on your GP surgery website.
Some on the forum find it helpful to keep a symptoms diary tracking how symptoms change over time and when treatment is received. It can be useful evidence of deterioration or improvement.
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 does not show updated BNF info.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies. I cried when I read this as it was as if I was reading about myself.
"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".
I also plan to read
"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD.
Referrals
Have you been referred to
1) a neurologist as neuro symptoms are present?
If you see a neurologist, ask them to check your proprioception sense. Two tests that help to do this are Romberg test and walking heel to toe with eyes closed. Problems with proprioception are associated with B12 deficiency. Vital that these tests are only done by a doctor due to risk of loss of balance. If no tests are done with patient's eyes closed then unlikely that proprioception has been fully tested.
2) a haematologist ?
NICE CKS link up page suggests GPs should seek advice from a haematologist for patients with B12 deficiency with neuro symptoms.
If GP won't refer you to a haematologist then perhaps you could request that they write to a local haematologist for advice.
3) a gastro enterologist if gut symptoms present?
Gastro specialist should be able to spot signs of gut inflammation (gastritis) from PA, Coeliac and other causes.
I wrote a very detailed reply with lots of links to B12 books, B12 websites, UK B12 guidelines/articles and other B12 info on another thread recently. See link below.
Can you afford to pay to see a Carciologist privately. It would be much faster than waiting until April. An initial appointment could be around £250, but you could say that any tests would have to be on the NHS. It would get you into the system faster.
So u bypassed the gp and went to a nurse which finally resulted in b12 injections? Asking because my gp are refusing despite heamotologist advice and below normal b12 blood test results. I’m wondering if going straight to the nurse instead of fighting doctors might work for me
I wasn't able to get an appointment with my GP, so had to see the 'advanced nurse practitioner' instead. She wasn't having any of it at first, as my b12 had risen to 242, and just prescribed a tiny dose of oral b12, but after a bit of a melt down from me in her office, she sought advice from her own pharmacist who agreed I could have 4 loading dose injections.
It's not the full dose they are supposed to give if there are neurological symptoms etc, but it's certainly better than nothing.
If I was you, I'd keep pushing and ask for a second opinion from another GP until they agree to treat you. Good luck
Wow, thank you all so much for such detailed and helpful replies. It's amazing that such a supportive forum exists.
To answer a few questions...
I've yet to talk to an actual GP about this. The only appointments I've been able to get since I've been back in the UK have been with the advanced nurse practitioner. I had to battle with her to get this loading dose. She seemed to think my palpitations, chest pain etc were likely down to anxiety. I argued that these symptoms, along with the anxiety, could easily be a symptom of my b12 deficiency. After my begging, she sought advice, I was then prescribed the loading dose.
I've only been given 4 loading injections, over the last 10 days or so. They will now wait and see how my blood levels look in 4 weeks to see if I need more or a regular injection every 3 months.
Sleepybunny- I've read through many of the guidelines for GP's which you linked to (thank you so much for such detailed info) and I do believe that you are correct that they are not following the national guidelines. I'm planning on printing this off, getting a GP appointment (not an easy task at my surgery right now) and talking it through with them.
As far as neurological symptoms go, the main thing is my right leg numbness. It's not totally numb, but the skin has way less sensation when i touch it than my left leg. I was also experiencing some strange twinging sensations in that same area while exercising (squats) for weeks at a time, however due to general fatigue/breathlessness/palpitations, I've had to cut back my exercise regime to next to nothing for the last couple of months, so I've not noticed this recently. Aside from this, the only other neurological symptoms are brain fog, a general feeling of being out of it much of the time, and itchy skin all over, without any rash. I'm not sure if that last one is b12 related or not.
They check my ferritin and folate levels along with my b12. Folate was at 6.9 ug/L (ref range 3.9-19.8) and ferritin was at 54 ug/L (ref range 12-300), so both within range. Perhaps it could be wise to supplement with some folate anyway, just to get that number up?
My mum has offered to help me out with going private for a cardiology consultation to get into the system quicker. I'm going to try with the GP to see if I can get it fast tracked through the NHS, and if not I'll definitely consider this route.
I'd like to start taking my oral supplements again, the ones I got over the counter in India (500mcg) to boost my levels, but part of me is hesitant as it may affect my blood results and give a false high reading when they test me in a month. If that happens, I'm afraid they might refuse all treatment.
As far as my diet goes, I'm pescatarian, so I don't eat meat, but I do eat plenty of fish (almost every day in some form) and also plenty of dairy and more eggs than most people consume. I'm always trying to keep my protein levels up so these foods feature pretty heavily in my diet, so I'd be surprised if I wasn't getting enough through food. I've heard that the oral contraceptive pill can affect b12 absorption. I've been on the pill for many years, but since finding this out, I've decided to stop taking it entirely. I've been off the pill for about 3 or 4 weeks now.
Pernicious anemia is still a definite possibility. I had the Intrinsic Factor Antibody serum blood test done in India, which came back negative at 8.74 (ref range <20.0), however I understand that this test doesn't necessarily exclude PA as only 60% of patients with PA have this antibody.
Anyway, apologies for the wall of text here. I do so appreciate everyone here and the help and advice you have offered.
"Sleepybunny- I've read through many of the guidelines I do believe that you are correct that they are not following the national guidelines. I'm planning on printing this off, getting a GP appointment... and talking it through with them."
I'd strongly recommend that you consider joining and talking to PAS before you tackle GP.
PAS office reopens 4th January but in mean time you could leave a message on their answerphone.
PAS website has section with useful leaflets which you can print out if you're a PAS member.
For example " An Update for Medical Professionals: Diagnosis and Treatment "
Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK
Do you have a family history of PA, Coeliac or other auto immune conditions?
If yes, make sure GP knows about it and hopefully excludes the possibility of other auto immune conditions eg thyroid disease, diabetes, lupus and related conditions such as Hughes Syndrome (also known as antiphospholipid syndrome APS) and others.
I suggest putting any thyroid results on the Thyroid UK forum on HU. In UK, GPs often only test TSH but there are other thyroid tests they can do.
"As far as my diet goes, I'm pescatarian... I do eat plenty of fish...also plenty of dairy and more eggs than most people consume"
The fact that you are eating plenty of B12 rich food suggests that there is probably a gut absorption problem.
Do you ever eat raw fish eg sushi or cured fish eg smoked salmon, salted fish, pickled fish etc?
One potential sign of fish tapeworm infection and some other parasitic infections is a rise in eosinophils, a type of white blood cell WBC. Result for eosinophils will be found on Full Blood Count FBC test results.
Has GP tested you for Giardia Lamblia, another parasite that has been associated with B12 deficiency and is common in parts of India?
If you suspect parasitic infection from abroad is a possibility, you may need a referral to a tropical diseases specialist.
"I'd like to start taking my oral supplements again...to boost my levels, but part of me is hesitant as it may affect my blood results and give a false high reading when they test me in a month. If that happens, I'm afraid they might refuse all treatment. "
You are right to be concerned about the possibility of GPs refusing treatment.
It's possible to have severe b12 deficiency symptoms with a result that is well within range but GPs are often not keen to treat someone with normal range B12 despite UK guidelines/articles suggesting they should if patient has B12 deficiency symptoms.
Link about writing letters to GP if symptomatic with an in range B12 result
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
LOL
Vitamin b12/Folate deficiency
B12 deficiency - next steps
Teenager with B12 Deficiency - Help
Going private in UK for B12 / folate deficiancy
New B12 Deficiency sufferer
