Newly diagnosed B12 deficiency

Hi everyone,

I'm new here and have received a diagnosis of B12 deficiency this week. Thankfully I had already done plenty of research before I was officially diagnosed so I knew that I may have a battle with the GP on my hands before going in there.

I received a result of 142 for B12, she mentioned 'low iron stores' too so gave me some iron tablets, but insisted I was only just below the B12 deficiency threshold (which apparently is 150). I have a history of PA in my family, (my mum was told she had it when she was incredibly poorly just before giving birth to me, and her mother died as a result from PA complications) so I used this to convince the doctor that injections were the way forward as I am feeling so lousy. She referred me, but when I contacted the nursing team to book the appointments she had only referred me for 1 injection. After lots of hoo-ha yesterday I managed to get a different doctor (who was quite rude and ended up hanging up the phone on me) to change it to proper loading doses, and they will start tomorrow.

I'm hoping I have done the right thing but a part of me is worried that I've signed up for something that I don't need? I'm feeling very foggy at the minute and incredibly indecisive, so I'm wondering whether taking charge of this myself has been a good idea. Can anybody tell me how 'bad' a result of 142 really is? Or is it down to each individual and how they feel? I am awaiting the result of a test for Intrinsic Factor to come back in the meantime, which I also had to push quite hard for.

21 Replies

oldestnewest
  • Hi fakeplastictwee whether you have P.A. or not "may" be determined by the IF test but at least treatment for you low B12 will be started so that's good.

    You don't say that you have the neurological symptoms associated with a B12 deficiency.

    In addition to your low iron was your Folate level tested?

    You probably know the NICE guidelines telling doctors how to treat you but just in case click on the link below, then click on "Scenario Management" then on "Treatment for B12 deficiency"

    google.co.uk/url?sa=t&rct=j...

    I wish you well.

  • Clive that website is only available in Great Britain. I can't believe it's blocked here in Ireland?

  • Considering the Japanese use 500 as their benchmark, your 142 is just a fleabite. Sounds as if your GP's are as bad as a lot of people's on this site. Good luck. I'm not a medic just another patient who has been ill treated by my GP.

  • Hi

    You have done everything right and with your level at 142 you certainly need B12 and regularly however as happens so often your gp has not identified the cause of your b12 as with a history and other markers like low iron then you should have been tested for PA.

    Have you any blood results showing your folate and ferritin levels as they are important markers to support diagnosis. You may also want some advice from the pernicious anemia society about your next steps to get the Right diagnosis.

    Mark

  • Hi guys,

    Thanks very much for your replies! So it would seem that I have done the right thing so far regarding pushing for B12 injections? She offered me tablets to start with but agreed to injections when I pushed the family history thing.

    I feel a little vague about my symptoms because I have been backwards and forwards to the doctors for 15 years with fatigue, stomach pains and bowel issues, and anxiety. All seem to strike randomly and I have tried to address the issue from the point of view that the anxiety was causing the other issues, so have had CBT, counselling and hypnotherapy (the latter two paid for myself). I was given a diagnosis of IBS last April but have always felt that my symptoms are too sporadic for it to be this. One symptom that is ALWAYS present is bloating and feeling full, which I have recently learnt can be linked to B12. Since my blood test a couple of weeks ago I have started to get bad tinnitus and pins and needles/crawling sensation. I'm not sure whether this is B12 linked or if I am still fighting a water infection which I was given antibiotics for.

    I will be having my first injection today. I asked for my blood test results yesterday and they are as follows:

    Serum B12 142 ng/L (150 - 620)

    Serum Follate 14.8 ug/L (3.1 - 19.9)

    Serum Ferritin 10 ug/L (15 - 200)

    The doctor said my "iron stores are low" and prescribed me iron tablets but when I asked about the possibility of PA she said that I'm not anaemic.

    I've also had a look through my full blood count and have spotted that MCHC is slightly high 363 g/L (315 - 350) which I have read is similar to MVC for b12 deficiency but not for Pernicious Anaemia? This trend is present last year too when my B12 was JUST above 'acceptable' at 156 and my MCHC was 352.

    SInce it takes years for a deficiency to build i'm hoping that this has been what the problem has been all along, and last year's test results seem to show this trend. It would be interesting to get my bloods from over the last 15 years but I'm not sure how to do that.

    Apologies for the long post.... seems like it's a difficult subject to be succint about! I have had a total NIGHTMARE since Tuesday with my doctors, but I'm too tired and stressed to type it all out again. It has essentially resulted in me having to bully 3 doctors into giving me the right prescription for 6 loading doses, and the prescription is still wrong. I was only given 5 ampoules even though it says its for 6 injections on the same prescription label. They are writing me a separate prescription for the final ampoule but will not waive the prescription charge for that one. I'm more than a little angry but have decided to focus on the fact that my first injection is today!

  • Hi again fakeplastictwee

    You wrote about your doctor "when I asked about the possibility of PA she said that I'm not anaemic" I think there is a confusion with the word anaemia with P.A. and iron deficiency anaemia. The two are not the same but I'm not medically qualified or knowledgeable enough to explain the difference.

  • Variation in population is such that serum B12 can't really be used as a single indicator of whether or not there is a B12 deficiency - it will fail to pick up 25% of people who aren't B12 deficient but will also pick up 5% who are

    so, symptoms are very important in evaluating a potential B12 deficiency - quite likely that you don't show signs of macrocytosis (enlarged rounder red blood cells) because of the iron deficiency which would tend to make them smaller - so evaluating the other symptoms and it sounds like you have plenty of them. There are a few other tests that can help to clarify but think, given the symptoms you had, these would be an unnecessary expense and you are doing the right thing.

    generally if the injections are being done at the surgery there isn't a charge - or at least that's what happens with mine and most others. You can source the B12 from reputable on-line pharmacies in Germany for less than the prescription cost.

  • My surgery don't do the injections themselves, I have been passed on to the district nurse team (who practice in the same building) and I have had a nightmare getting the doctor to do the referral properly. The district team told me I need a prescription of the B12 (which I pay for) so I then had to go back to the doc to tell them this, and then three separate doctors got the prescription wrong. One of these doctors told me on the phone that I'm "only just under and 6 isn't necessary". They didn't like it when I was forceful and then said to me, "well you don't really need it but I'll authorise it" and then hung up on me. The nurses, doctors and pharmacy (with the drugs) are all under the same roof. Never known such utter incompetence.

  • I'm sorry but I really think you are being mislead and sent from pillar to post. I have never paid for a B12 prescription. I have had injections given by district nurse (admittedly following discharge from hospital) and at no point was there any suggestion that I should be paying for any prescription. The prescriptions used for my injections are filled at the surgery but I have never been charged.

    Not really sure where you can take this - perhaps raise it with the practice manager.

  • Hmm... I will definitely look into this!

  • My nursing friend has just pointed out that once I have a long term medical problem diagnosed (Pernicious Anaemia) then I will be exempt but at the moment I don't have that, I'm just b12 deficient. Maybe that's the difference on whether you pay or not.

  • can't help feeling its a bit of nit-picking - your deficiency isn't dietary so must be an absorption problem and unless that is h pylori its unlikely its a reversible problem so will be injections for life.

    hope you get a proper diagnosis soon

  • Hi Fakeplastictwee. Your b12 is indeed very low and without the right treatment your symptoms will get worse. My own b12 was 164 when tested last June, but by then I had major neurological symptoms which have not gone away although eased a little with 3 injections weekly for last 6 months. So please do not be fobbed off you need to get adequate b12 to start to improve. I wish you well.

  • Sorry to hear about your symptoms not going away.

    Since I had the blood test I have started feeling breathless, having tingling sensations and dizziness... a little like when you have a virus. I'm hoping that this isn't B12 related. It would be quite a coincidence that these symptoms kicked in just after my blood test, when B12 wasn't really on anyone's radar, including my own.

  • From reading on here, some people seem to feel worse before they get better. I think it is something to do with the B12 getting to the cells and 'waking up' the nerve endings. Although care should be taken if you have an adverse reaction to them, but that would be pretty immediate. Hopefully things will settle soon. Take care.

  • Thank you. I've got worse since the initial blood test, not B12 dose. I had my first dose two hours ago so it's a bit soon to say! But I will definitely try not to panic if I get worse first. Thanks :)

  • Hi fakeplasticwee, I can only speak from my own experience and research which I did prior to being diagnosed and getting lots of information on this site. The tingling sensations are neurological, and dizziness or lightheadedness or symptoms of vertigo are all b12 deficiency related. I know in my own case dizziness, palpitations, breathless etc came several years before neurological symptoms began and connections never put together or blood tests taken. It is so important to get adequate b12 injections or I believe the condition gets worse.

  • Hi potter5. The tingling sensations have started literally this week, so I'm hoping that if it is due to B12 then I am catching it just in time. I'm still unsure as to whether it's B12 related as I recently took antibiotics for an infection, which seemed to help my general feeling of wellbeing, and the tingling sensations arrived when the poorly feeling came back a few days after antibiotics finished.

    I am reluctant to go back to my doctor to find out due to the way I have been treated this week.

  • I have read that some antibiotics can deplete B12, if I am wrong, I'm sure someone with more knowledge will correct me! So if you were already low, they could have depleted further. Just a thought as the symptoms you describe could be related to the low B12.

  • Hi Fakeplastictwee, yes, if the tingling sensations are a new symptom hopefully with the b12 injections you will prevent further neurological damage, but I think it would be prudent to go back to your doctor and let him know you have experienced these sensations, it can only reinforce your need for regular b12 injections. When you have neurological implications you should have injections every other day until symptoms improve. I receive 1 injection each week at my doctors surgery, only got this by going privately to neurologist. and I self inject a further 1 or 2 times weekly. The important thing is to start your treatment immediately especially as your b12 is so low to give you the best chance of full recovery, and

    don't worry about having to go back to your doctor, he has a duty of care towards you. I wish you well.

  • I too just find out that I am B12 dificiant as well but not with my primary dr. It was the naturopathic dr. Who orderd the homocysteine test. My number was 10 and she said it should be between 6-8. She told me that my body has harf rime to absorb the B Vitamin. So, she put me on special form of the B- complex that my body can absorb it right.

    It's name is B-Comolex Pluse by pure encapsulation company. It worked for me after two mounths my number were down to 6.

    I told my Primary Dr. and laughed at me and told its a joke. I also talked about the homocysteine blood test to two diffrent cardiologists and they also laughed.

    I don't understand why the conventional drs don't believe the nathropatuc drs at all.

    Anyway, the natural dr told me that from now on I should take this form of B complex for the rest of my life.

You may also like...