I found this community last night and am so glad I did. I’ve been worrying all weekend having had a call from the GP nurse on Friday to tell me that I had low B12 and need to come in on Monday as a matter of urgency for injections.
Although it took me having to pay for my bloods to be done privately to get enough information for the NHS to intervene. I am pleased in a way, that there is finally a possible cause to the lethargy, brain fog, low mood that I have experienced since my teens (I am now 37). I had tired all sorts of cures, various SSRi, talking therapies, exercise(!), diet, ketamine some of which worked a bit, for a time, but always the symptoms would return. I really hope this might be a turning point. I am grateful that my GP has picked up on it and is acting upon it as i know this isn’t always the case
Any advice / questions I should ask for my first consultation and injection today?
I’ve attached my bloods, just in case anyone has experience of reading these and can shed any light on them as it is all Greek to me.
Thank you,
Ed
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Eddy23
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Hi Ed! You look very healthy! Thyroid and iron panel are perfect, you must have a very good diet! I can't see b12 on the list, so, in my view, based solely on this result, its too soon to attribute the high MCHC to PA. Sure it is a possibility, but low folic acid can have a very similar result.Since b12 injections can do no harm, i would have them, but i would also request my folic acid to be tested. Just to be safe ((Hugs))
Thank your message 2FloorLuka, I will request folic acid levels to be tested. Will also try and get some more information from the GP to try to understand their reasoning behind the need for B12 injections. I’m glad my bloods look healthy! Although I don’t feel it. Fingers crossed this will help. Thank you.
I'm struggling to see your results but did notice that your ferritin result was quite far up the range although not above range. Do you take iron supplements?
Some links I post may have details that could be upsetting. I suggest you take a week or two to sift through the info so it's not so overwhelming.
The reason I post a lot of information is my personal experience of the lack of knowledge about B12 deficiency among health professionals I had contact with.
Link about "What to do next" if B12 deficiency suspected or newly diagnosed.
Each CCG/Health board in UK is likely to have their own local guidelines on management of B12 deficiency. I suggest you track down the local guidelines for your CCG/Health Board and compare them with BNF/NICE CKS and BSH links.
Some local guidelines have been posted on this forum so try a search of forum posts with terms "local guidelines" or try an internet search with "name of CCG/Health Board B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to CCG/Health board asking for a link to or copy of local B12 deficiency guidelines.
Some local guidelines in UK are unhelpful. See blog post below.
Many forum members find that their doctors and other health professionals lack understanding of B12 deficiency. The links below should give you an idea of some of the more common misunderstandings that some health professionals have.
Blog post that mentions misconceptions about B12 deficiency
Thank you SleepyBunny, it was all a bit much for me to take in when they phoned on Friday. I have my meeting with the GP later today for the first injection. I will ask them about the ferritin levels. I have taken iron supplements, but only since the bloods were taken.
Take plenty of time reading through things.I hope you have someone supportive who could help you.
Has your GP said what they think is causing your low B12?
What's your diet like?
If you eat plenty of B12 rich food eg meat, fish, eggs, dairy etc then diet as a cause is less likely and more likely that there is an absoprtion problem in the gut.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, more B12 books, more B12 websites, more B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Thank you Sleepybunny, My family are pretty busy with their own stuff, so I am on my own with this one.
It wasn’t the best start today! I turned up to the surgery as instructed only to be told I should have picked up my B12 from the pharmacy prior to attending. Fortunately they managed to fit me in later in the day once I’d collected.
The nurse GP had stated on my notes that they thought my B12 deficiency was down to diet. Although I eat lots of eggs, although not much meat. Otherwise my diet is varied and good.
I’ve not been tested for Coeliac disease, although have wondered about it being an issue for me.
I have arranged an appointment with the GP or possibly nurse GP on Wednesday to get some more info from them on their prognosis and plan. Aiming to get them to set up a B12 Serum, Folate, Ferritin, MMA, tHCY tests (got these from your links so thank you!) if they can’t do this, I will look to go private with MediChecks or similar (any place for private bloods that you’d recommend?) and then refer results to GP.
I am slightly worried that they have only got me on the loading of 3 injections a week for 2 weeks and then one every 3 months, and even this they aren’t sticking to this week as I am only having two injections on on Monday and one on Thursday. Given I have Neurological symptoms (again thank you, as it was only by reading you links that I noticed these) insect crawling sensation, word finding problems, brain fog, RLS, vertigo, feeling cold all the time, flickering eyelids. I have orders 10 x VITAMIN B12 DEPOT PANPHARMA 1000 μg/ml Inj.-Lsg ampules from bodfeld and am going to start self injecting to infill what they are offering. Does this seem silly?
I’ve really struggled with the GP over the years, the least I have to do with them the better in my mind.
Hi! It doesn't look silly at all. Unfortunately many People here had to do the same. Its important to give NHS a try, though, because b12 deficiency can be also a symptom of something else (coeliac disease, as mentioned above, for example). If that's the case, once you have started treatment for the right condition, you probably won't need as much injections as us (My father doesn't need them anymore). If you are not vegan/vegetarian you must tell them very clearly. Otherwise they will only give you a bunch of tablets and this information won't get in your records.
Intrinsic factor antibody is a tricky test, but i would have it as well. Good luck!
Brilliant advice from all above. I would also reiterate to get your own health records and stuff online from your GPs so that you can look at your results and comments about your health and challenge where necessary. Good luck, I'm sure you sound proactive enough to restore your own health. 😀
"had stated on my notes that they thought my B12 deficiency was down to diet. Although I eat lots of eggs, although not much meat."
B12 rich foods include meat, fish, shellfish, most dairy products, eggs and other foods fortified with b12 eg some breakfast cereals.
If you don't think your B12 deficiency is due to your diet then I suggest you write out a typical weekly diet, food and drink and discuss this with your GP. Highlight any B12 rich foods or B12 fortified foods you have eaten.
May be worth stating in a brief, polite letter to GP that you do not feel it is dietary and ask to be tested for PA and Coeliac.
Link below suggests leaving at least 48 hours and up to two weeks after a B12 injection before having the Intrinsic factor Antibody test ( a test for PA).
If there is a family history of PA (Pernicious Anaemia), Coeliac disease or other auto immune conditions, this is worth mentioning to GP. Having a family history of auto immune conditions can increase the chances of developing an auto immune condition.
It's possible to have more than one cause of B12 deficiency at the same time. See Risk Factor links in my other reply.
"Aiming to get them to set up a B12 Serum, Folate, Ferritin, MMA, tHCY tests"
Bear in mind that results from a serum B12 test, MMA, Homocysteine (tHCY) and Active B12 (holotranscobalamin) test are likely to be affected by any B12 injections or B12 supplements you have had recently.
Some forum members have had B12 injections stopped when they recorded a normal range result even though they had typical symptoms of B12 deficiency.
If they said you have B12 deficiency , I assume that at some point they have already tested your serum B12 so check your medical records when you have the time and energy.
I think getting your folate and ferritin (or other iron tests) is a good idea.
"Given I have Neurological symptoms"
Make sure your GP has a list of all your symptoms especially every neurological symptom and definitely any symptom affecting your spinal area.
BSH guidelines (can't remember which page) indicate that patients with B12 deficiency with neuro symptoms should be treated according to the BNF pattern for those with "neurological involvement".
As far as I can tell, this advice applies to any cause of B12 deficiency, even dietary B12 deficiency.
GP will have a BNF book and the info on B12 treatment for those with "neurological involvement" can be found in Chapter 9 Section 1.2
"slightly worried that they have only got me on the loading of 3 injections a week for 2 weeks and then one every 3 months,"
Your GP appears to have put you on the BNF treatment pattern for patients with B12 deficiency without any neurological symptoms which is
6 B12 loading injections over two weeks followed by a maintenance B12 injection every 2-3 months
BNF pattern for those WITH neurological involvement is
A B12 loading injection every other day for as long as symptoms continue to improve then a maintenance injection every 2 months
There is no set time limit as to how long the every other day loading injections can continue for if neuro symptoms are present. Could be weeks even months of them.
Both patterns of treatment in BNF allow for maintenance B12 injections to be given every two months. Your GP may not know this as BNF guidance was changed a few years ago.
Letter
See Point 1 in the letter writing link in my other reply which discusses what to do if you are being under treated for B12 deficiency with neuro symptoms present.
If your GP is reluctant to put you on the treatment pattern for those with "neurological involvement", it might be worth discussing politely with GP that untreated or under treated B12 deficiency may lead to damage to spinal cord (SACD, sub acute combined degeneration of the spinal cord).
I am not saying you have this, I am not medically trained but I am saying that your GP should be aware that SACD is a potential consequence of B12 deficiency if untreated, under treated or treatment is delayed. Discussing this may make GP pay more attention to what you are saying and may be enough to nudge them into putting you on pattern for those with "neurological involvement".
I should also warn you that some GPs cannot cope with assertive patients who ask questions so be prepared for GP/patient relationship to come under strain.
I recommend you track down local guidelines on B12 deficiency for your CCG/Health Board when you have time. It may help to explain why GP is only planning to give you injections every 3 months.
Thank you for all this. Have a call with the GP today going to push for these tests. I have just found the active B12 on the last page of the report. Active is 134pmol. They have reduced my injections from three a week to two a week based on these results.
I'm really sorry, I can't read the results. May be worth you typing them out.
"Active is 134pmol"
I think your Active b12 result is probably at or towards the top of the reference range.
Do you know what the reference range is...should be in brackets next to the actual result.
Were you supplementing with B12 or getting B12 injections before you had the Active B12 test?
Supplementing with B12 prior to diagnostic tests for B12 deficiency can make it harder to make a diagnosis of B12 deficiency.
Above range serum B12 results and above range Active B12 results where there has been no B12 supplementation and no B12 injections should be further investigated as they can be associated with some serious health conditions.
Have you asked your NHS GP if you need further tests?
Thanks SleepyBunny, the reference range is 25.1 - 165 I am sure that I read online somewhere that in some countries the active B12 range should be between 500 and 1000…I have a call with the GP this afternoon going to run through further tests.
"I am sure that I read online somewhere that in some countries the active B12 range should be between 500 and 1000"
That would be very unusual...are you thinking of serum B12 ranges ?
A typical ref range for serum B12 (also known asTotal B12) in UK would be 180 - 1000 ng/L but they do vary a lot between different CCGs/Health Boards/NHS Hospital trusts in UK.
Hi, you seem to have all your blood results apart from your B12 level. I would ask for that. Usually b12 and folate are automatically tested together. It would be useful to know how low your b12 is and if your folate is normal. Now you have started on b12 injections your level will have gone up so not much point in having it tested again so soon. It’s very unlikely that you will have more frequent b12 injections offered by your Gp. My Gp said that they only do that in a hospital setting if people are having problems walking despite the NICE guidelines. If you have low serum b12 levels this can be because either you don’t eat enough b12 in your food via meat and dairy or because you don’t absorb the b12 from your digestive system into your blood to be transported to your cells. Either way injections are the quickest way to raise your b12 levels. If the cause is dietary then b12 tablets can work in the long term as maintainance if neurological symptoms have resolved. There are several causes of malabsorption of b12. Pernicious anaemia is when you don’t have enough intrinsic factor in your gut which is needed to combine with b12 so it can be absorbed. This is an autoimmune condition and frequently people with PA also have another autoimmune condition. PA can cause macrocyclic anaemia or just neurological symptoms ( the name is confusing; you don’t have to have macrocyclic anaemia to have PA). You can have a blood test for intrinsic factor antibodies. If this test is positive it means you have PA but if it is negative it doesn’t rule PA out. You may have malabsorption of b12 if you are coeliac, sibo, H pylori infection, had stomach surgery, take ppis eg omeprazole. If you take ppis then you don’t produce enough stomach acid to separate the b12 from the food. B12 tablets may work for this long term. There are many other causes of neurological symptoms so you might want to consider asking for a referral to a neurologist although this will take some time on the nhs. Assuming your b12 levels are definitely low then b12 treatment seems the best thing to do first. It also might be worth having your Hb1ac tested to check for diabetes as you can get neurological symptoms with diabetes. Also vit d level. It is possible to have blood tests for MMA and homocysteine levels which can help in diagnosis of b12 deficiency but this is usually only done in a hospital . Good luck. I hope your symptoms improve.
Hi! Ed, i am totally intrigued by your results. Folate, thyroid, active b-12, Iron... everything in order! You don't look like a typical case of PA. Were you on any kind of supplements? If you were, it can explain a lot!I have to fix my first input. You don't have macrocytosis - unusually large Red blood cells (high MCH), you have too much haemoglobin inside of a single blood cel ( high MCHC) - probably related to your Iron status.
It's very discrete, but, as you dont feel well, its worth checking. Have you considered hemochromatosis?
Well that escalated quickly! The nurse GP just hung up on me, after I told her I wasn’t a vegan and didn’t think my B12 deficiency was dietary, I pointed out that I’d got various neurological symptoms, twitching eyelid, collapsing legs, brain fog, word finding problems, restless legs. Based on this I asked to be put on a every other day injections regime, as originally agreed. To which she said that I had the sort of personality that runs away with things like this and there was nothing to worry about, and I should stick with two infections a week do three weeks. When I informed her that I would be injecting every other day she put the phone down on me. Not ideal. I think I will try to speak to the actual GP when I go back to them after a few weeks of injecting.
In answer to your question I did uses to supplement with Lamberts B50 complex, Vit D 4000ui, Vit C, K2, Magnesium, Mega Mineral.
Eddy23. Several of the images of results you posted within this string contain your personal details (name, date of birth etc.) so I've deleted them to safeguard you from potential identify theft (and identification - since replies here are also streamed across several NHS sites).
Please can you redact your personal information and re-post the images of results (if you wish to do so).
Thanks to the forum member who spotted this and flagged it to admin.
Hi Eddy23. Before I was diagnosed with PA, my primary ran some other test. Instrinic factor which should be 0.0-0.1 which has to do with lack of absorbing in the stomach and something called MMYTHFR. Sounds like a dirty word but is testing gene mutations. Each of my parents had one that caused my PA.
There are some things that you can check on your own that are telltale signs...like if you find that you sigh a lot(sounds strange, but PA can cause a lack of oxygen so you sigh to get more air) or try standing up closing your eyes. Make sure you stand near a couch or something in case you fall over. If you feel like your falling or fall over, that's a big sign of PA. I could stand at all. Best of luck and hop you get more answers soon
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Have I got B12 deficiency 
Finally got bloods done
Just got diagnosis, what else should I be taking
