Doc ignored my levels help pls

Hi, well my last serum b12 was 213. I ordered the active b12, folate and ferritin blood test from blue horizon. My results were..

Active b12 52

Folate 4.8

Ferritin 19

I'm an absolute mess. Been under neurology for a year had ms, als, lupus and so on ruled out.

Im feeling very ill. Weak, diarrhoea, bloated, nausea, twitches/spasms, tinnitus, collapses/faints, excessive/urgent urination and bowel movements, muscle pain really bad.

Consultant not seeing me till Oct so went to gp who has up till now been great. She wouldn't hear of it being anything to do with b12. Said 213 is just as normal as someone 900. Absolutely not that she said.

So no extra tests to check intrinsic factor or paracial cell thing.

No celiac test to see about my diarrhoea and stomach pain. Nothing.

I cried my eyes out. I don't know what to do. My awful thoughts are back because I can't go on like this. I'm falling asleep in charge of my toddler, no love life with hubby as I'm so exhausted and in pain, list my job. Essentially I'm disabled and housebound and medical world ignoring me as they don't believe in b12 issues.

Please someone help me, tell me what to do. I'm sinking xx

24 Replies

  • Hi Gem Lou,

    Can you pay to see a haematologist privately? Its not that expensive I found, but it was a long time ago.

    With out ref ranges of normal used by horizon's lab I can not really say much, it just looks like your Active b12 52 is borderline (may need to test MMA), Folate 4.8 on the low side but still OK, Ferritin 19 to low.

    Are you on iron tablets? Do you know the size of your MCV, have you got copies of blood tests?

    I will add the link to your previous post that has far more info in it see:

    Its very difficult for me to say much, in the end you seem to have a lot of other issues as well, it may not be a B12 problem for you, and seeing a gastro could help, but it all will take time..sorry I can not give you something more straight forward, its just B12 may help, but your ferritin is the one that really looks to low so you should first have an iron def addressed it looks like, and a haematologist is the one who will know most,

    Kind regards,


  • Hi Marre

    The active b12 range was 25.1 - 165

    Folate range was 4.6 - 18.7

    Ferritin range was 13 - 150

    Doc won't order any tests she totally doesn't acknowledge b12 or anything as an issue.

    I'll have a look at how much a private haematologist app would be but we don't have much spare after rent and bills.

    Would they sort me out in one private app do you think?

    Can't believe they are leaving me this way. Xx

  • Hi Gem Lou,

    Your results are all so near being deficient, the NHS will just wait until you are deficient sadly enough, before you would get treatment, and that means months more of struggling on. A haematologist should not cost you more than say £150,-,, I rung the local private clinic in my area (but you can also just look online) and ask to speak to a haematologist, who (2006) was happy to see me for an hour for £100,-. It helped me a lot, but I can not say it will help you, I just hope it will,

    Kind regards,


  • I really feel for you. I really struggle and I don't have young children, I'm astounded , whether it's B12 or something else, that we are left feeling like this. I hurt every single day, vision bad, and need to sleep lots with no energy , it's not normal but no professional seems to care

    I do wish you well and you get your answers and treatment


  • Have you tried contacting the PAS to see if someone there might be able to help you argue your case with your GP.

    I'm really sorry that there is so much ignorance and snootiness when it comes to B12 - like they think vitamins don't count but then vitamins are vital - that's why they have been investigated and studied. It's not as if it is something expensive and it seems rather stupid that they aren't even prepared to try it ... and absolutely disgusting the way those doctors who are prepared to try then seem to get persecuted by the medical establishment, even when the treatment obviously work.

    Its difficult to really know what to say on private help because some people find that even when they go private they are dismissed, but I really hope that you manage to get to the bottom of things.

  • Thanks, I have a volunteer who helps me once a week at home.

    She's compiling the relevant reresearch/ NICE guidelines etc.

    She rang me earlier and said she is going to compose a letter and we can think about sending it to my consultant. Maybe that might help.

    If no luck after that then yeah suppose I'll have to contact pas


  • Good that you have some support. Hope it works out.

  • I'm so sorry GEMlou - it's unbelievable and outrageous that you are being left like this and with a young child to care for, when relatively cheap and simple injections could make such a difference,

    It is good that you are writing to the consultant and I really hope you will be heard this time. It's also a good idea to contact the PAS, who might be able to make suggestions and advise on the best way to proceed so that no more time is wasted.

    Don't forget that we are all behind you and wishing you well.

  • If I can't get my consultant to do the tests for pernicious anaemia I'm going to start self injecting as I can't carry on.

    Hopefully my Gp will arrange an earlier appointment with him as she said she was going to speak to him directly about my case although not with regards to b12 etc.

    If he won't I'll have totaled matters into my own hands. X

  • Hi GEM,

    So sorry to hear what you are going through but sadly not surprised. Gambit's advice about contacting the PAS is good. I have spoken to them on several occasions. Head office: 01656 769 717

    The next website has examples of letters you could send to your GP/consultant. There are e-mail contact details on the site. Perhaps your volunteer could take a look. I've contacted the person who runs the site and they are very sympathetic.

    Look at the section "B12 - Writing to your doctor"

    You may also be able to contact someone at It can take a while to get a reply from this site.

    If you haven't already I would get a copy of the following books

    Could it Be B12 by Sally Pacholok

    Pernicious Anaemia; The Forgotten Disease by Martyn Hooper

    Living with Pernicious Anaemia by Martyn Hooper

    It must be so hard trying to look after your toddler when you feel so rough, have you thought about contacting Homestart.

  • Hi again,

    Just to echo Polaris' advice on your other thread...if at all possible take someone with you who is prepared to speak up on your behalf and has read up about B12 deficiency, in case you are too tired to.

    I'd take copies of the following documents to your next consultation/appt with the relevant bits circled

    “In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord. We recommend storing serum for further analysis including MMA, or holotranscobalamin and intrinsic factor antibody analysis, and treating the patient immediately with parenteral B12 treatment.”

  • Hi Gem, your symptoms really do sound more like Coeliac disease than B12, per se, although your B12 is far too low, especially with all your symptoms. I would insist on coeliac testing, or perhaps better still, insist on seeing a gastroenterologist. You will have more luck getting thorough testing form them, hopefully. It's possible that you have a coeliac disorder which is causing B12 malabsorption. Either way, you need to start somewhere.

    Perhaps if you set yourself one goal, to see a gastroenterologist, or to get coeliac tests, then just stick to that. If you pursue one thing at a time, instead of inundating docs with lots of symptoms, you usually fare better. The poor things are easily confused!

    Best of luck!

  • Hi, I did a celiac test two days ago at home (ordered it online) it was negative.

    My volunteer is from homestart she's fab, she's been researching and printing guidelines off.

    I will contact pas and look at purchasing the books.

    I've started taking folic acid 5mg a day as my folate was 4.8 with 4.6 being the lower range. I've been told this may take my b12 under the threshold for them to treat me so will watch symptoms and get them to retest me in a few weeks.

    I've been like this a yr and can't carry on this way...I'll do it myself if no help after retest and contacting pas xx

  • Hi,

    Good luck. I hope you find the help you need. My heart goes out to you.

    It may be worth you looking at the Coeliac UK website and others. It is possible to test negative and still have Coeliac's disease. It mentions about this on NHS Choices

    "I'll have a look at how much a private haematologist app would be"

    My advice would be to choose who you see very carefully. I spent hundreds of pounds on seeing a private haematologist and feel the money was wasted.

    Have you asked your family if they know of any relatives (living or deceased) who have/had PA or B12 deficiency or Coeliac's disease or any auto-immune conditions? There can sometimes be a genetic link.

    If your docs ruled out lupus and MS, did they rule out Hughes syndrome?

  • I've never heard of hughes syndrome. My ana lupus test was negative and although I have 'several high frequency foci' on brain mri apparently they weren't in places that would be diagnostic.

    I'll talk to family to see. My mum has psoriatic arthritis, brothers have skin psoriasi.

    I think I'll just end up self treating to be honest. I can't take anymore.


  • Hi,

    One of the symptoms that the PAS lists as indicators of PA/B12 defic is psoriasis.

    Have your relatives with psoriasis ever had their B12, folate, ferritin, full blood count checked? If they have they should be able to get paper copies of these results, may be a charge for this.

    Does your GP know your relatives have psoriasis? I was told by a rheumy that it is possible to have psoriatic arthritis without psoriasis. I was checked for this when I mentioned a close relative had psoriasis.


    pernicious-anaemia-society.... This one lists psoriasis/psoriatic arthritis as possible symptoms.

    Not sure if these are of any use but looked for articles linking foci with coeliac/gluten intolerance.

    One of the characteristic signs of Hughes is livedo reticularis. Livedo is associated with many auto-immune conditions including pernicious anaemia, MS, fibromyalgia plus others.

  • Thanks for all the info 😀

    I'm not sure if they've ever had those things checked but will ask.

    My mum's always suffered tiredness. Currently she fighting recurrent breast cancer in lymph nodes.

    Rhumy didn't think I had psoriatic arthritis. I do get scalp psoriasis and elbows but not as bad as my brother and mum.

    I'll have a read through the articles you have given once kids in bed.

    Thank you for the info x

  • Hope you find something that helps.

    The book "Could It Be B12" by Sally Pacholok mentions possible links between breast cancer and B12 deficiency.

    It is possible to have the IF Intrinsic Factor tests done privately without referral from GP. › ... › Intrinsic Factor Antibodies blood test

    I only started supplementing myself when I felt I had done everything I could to get help from my GP. I do not have a diagnosis of PA but have many of the symptoms and have had B12 deficiency in the past.

    Once you supplement yourself with B12 it will invalidate many of the tests for PA/B12 D that a GP might do and it might be hard to get a diagnosis from the NHS.

    Has your GP checked levels of other vitamins? especially Vitamin D? Vitamin D deficiency is often associated with Vitamin B12 deficiency.

  • How are you these days Gem_lou? I had an idle few minutes and was just going through old posts when yours caught my eye, and I just wondered how you got on.

  • Hi, well got nowhere with gp so I started my own jabs (nurse neighbour did first one in case of reaction) I'm following the every other day guidelines.

    I've since received blood results from hospital saying I've got the lowest vit c level possible and low vit d.

    So I've been started on treatment for those by doc who now says 'oh your vit b12 was low too, think we should refer you to gastroenterology to check for malabsorpsion issues'

    So hopefully they will sort me out as I can honestly say I've felt like I'm dying and not in a melodramatic way.

    My migraine issues have been really bad tbe last few weeks so not been on here much.

    Hoping all the treatment starts making me feel better soon although I understand it can take time.

    Hope the rest of you are doing ok. X

  • Good you are getting sorted. My GP wouldn't refer me to gastroenterologist , so it is good yours is. Hopefully you will soon start to feel a lot better! All the best!

  • Thanks for letting me know. I am glad that things seem to be moving forward for you, albeit slowly! Go get'em!

  • Firstly , get all your records and make a complaint to the P.H.S.O . Send your results from Blue Horizon .

  • I hope they sort you out Gem,

    Perhaps they will check you for coeliacs again. Are they going to give you a gut biopsy?

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