Well folks, my first visit to my GP yesterday to discuss the POSSIBILITY of low B12 levels was met with just the suspicion and hostility that I predicted. I came away in tears and once again felt like I was wasting time and should really just get on with being a neurotic, 58 year old, depressed whinger. Despite 3 years of progressively worse symptoms and multiple diagnoses, I was met with that "glazed" look when I suggested all my various symptoms may be linked.
My memory is so poor, I had listed all my symptoms, using your check list and not adding anything that I couldn't be totally honest about. I had a few extra of my own- restless legs and difficulty starting to pass urine to add to a myriad of other neurological stuff, heart problems etc etc.
I had a FBC last week. My GP said that was normal and nothing on it indicated I needed a test for serum B12. He said my RBC were a normal size and they would be large if I needed a test for B12. I asked him to consider that my father has PE, all my symptoms, my DESPAIR too! Very reluctantly and to humour me I suspect he ordered serum B12, and only that. No folates, no folic acid or Vit D and no Intrinsic factor antibodies. He was adamant- he said ONLY if serum B12 was low would he do any other tests. He said I wasn't anaemic and was obviously reluctant to do test.
I came away feeling defeated and tearful again.....more ammunition for the depressed, mad, hypochondriacal, menopausal woman diagnosis. I said that whatever was going on was robbing me AND my partner of a life.
So....where to go from here? I shall of course phone for my results tomorrow. I strongly suspect they will be within normal range. I asked as advised by the lovely members on here, for an appointment next week to discuss results. I was shocked to hear that the surgery is going to a new "triage" appointment system. I can no longer make an appointment but have to phone "on the day" where my needs will be triaged and the Dr will phone me back at "some stage" that day to discuss whether a telephone consultation will surffice or whether I am deemed worthy of an appointment. I feel defeated before I begin!
So...I have started a journal today, logging all conversations, relevant facts. I have downloaded the Important Information For Clinicians sheet so feel better armed with that and am slowly getting my head around understanding more about PE and B12 deficiency thanks to your amazing forum and the PAS.
I plan to challenge the Dr on Monday...obviously it will have to be via the phone now which is disappointing. I feel as if I am at the start of another long journey, having already had a battle over the last few years. What ever happens I feel if I have neuropathy on top of everything else, I would like to be given the chance to just TRY B12 injections . I feel I deserve a chance!
Thank you again for the support and valuable advice here.
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Jesswoozer1
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Hi Jesswoozer1. Oh dear, I'm so sorry that your appointment went so badly and left you feeling so distressed.
To refuse testing for PAa when it runs in the family is just disgraceful, especially in view of all your symptoms.
I note your GP says your FBC results were normal - hmm - I wonder? And he obviously does not know that 30% of patients who have B12 deficency and neurological symptoms do not have large red blood cells (macrocytic anaemia) - what he mistakenly looked for, on your case. This type of aneamia often only appears in the later stages of pernicious anaemia - and can be masked if you also have iron deficency anaemia (which reduces the size of red blood cells and makes them smaller).
So...a couple of suggestions...can you get a copy of your FBC results and post them here, together with the reference ranges? We could look at them, see if your GP is correct...or find some evidence to help,you argue your case.
It would also be useful if you could post your serum B12 results (and the defence range) before you either speak to or see your GP. They often assume that scraping in at the bottom of the range is good enough and don't realise that you can have B12 deficiency even if,you levels are with what they call the 'normal' range.
Please don't despair...we can help you put together the right arguments to present to your GP and also provide the evidence you will need to support those arguments if it looks like you do have a possible problems with B12 deficency. And given your family history and current symptoms, this is quite likely.
As I mentioned before, GP's are often ill-informed about PA and or B12 deficiency and can be quite hostile...as you found out to your cost....disgraceful.
What many people find is that the best way to deal with this is to become knowledgable about the conditions (B12 deficency can have causes other than PA - which again confuses medics 😖).
So...I'm going to post some links below that will help,you to start understating what your GP should be doing for you in terms of testing, treatment, and ongoing management. The links also contain 'myth busting' information which will help you to counter some of the very odd notions that many GP's seem to have. This is all information and evidence that can be used to support a treatment request, if needed.
It'll be easier to give more focused advice about this once you've posted your B12 and FBC results 😄.
So in the meantime, have a read of the documents and please don't be daunted by what looks like a lot of links. Most of the documents are only one page and very easy to read. The BSH Cobalamin Treatment Guidelines are longer but do contain very useful summary sections throughout. Just print them out and read at your own pace....eat the elephant in chunks...and perhaps highlight anything that relates to your case so that it's easy to find again. This is all information and evidence that will help you in the future.
And you're right, this is a long journey...which GP's can make so tough because of their open hostility. But just remember that there are people here to help and support you. And most of us have been given labels in the past - hypochondriac, menopausal, depression, anxious, ME, CFS, fibromyalgia, MS (to name but a few)...so,you're in very good company 😄.
Anyway, don't let this beat you, post again soon, take very good care, and here's those links:
stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)
Thank you so much Foggyme! I feel so supported and so much less lost than I did a few days ago! I can phone for blood results after 2 pm tomorrow and shall ask for a print out of serum B12 levels and last weeks FBC. I will post them before I speak to the GP next week.
Just a quick word...do I carry on posting on this thread or start a new one each time ?!
People tend not to go back to old posts - unless there is something to prompt them - such as mentioning their name so probaby better to start a new thread.
Hi Foggyme. Your reply above and to my post under "Newbie" are very informative and I thank you for that.
You can have all the arguments written down and go to the GP armed with info about ranges etc but if the GP won't listen then you are stumped.
Cut a long story short........I even asked for a referral to a private endocrinologist and the Gp said it was not necessary. If you self refer and results get sent back to your GP he/she will more than likely be annoyed. It is not so easy to change GPs in the NHS without implying negligence.....even though they ARE being negligent when they dismiss low B12 levels.
Those of us who are low Vit D and B12, Hashimotos etc are ILL and vulnerable and are unable to keep up an argument with a GP who just won't listen. For my part, I just don't know where to turn next
The next stage would be to use the materials that Foggyme has provided to write to your GP drawing their attention to the following
a) B12 serum is not a test that can be used as a single indicator to rule out a B12 deficiency - if it is used in this way it will result in picking up 5% of people who are not B12 deficient and missing 25% of people who are
b) Macrocytosis is not a defining characterisitic of B12 deficiency - it is a symptom and one that isn't present in 25-30% of patients when they present.
c) symptoms are an important part of evaluating B12 deficiency - B12 is used by many process in the body - creating of red blood cells in your bone marrow, maintenance of lining around nerve cells, recycling neurotransmitters both outside the brain or in the brain, and the processes by which energy is released in cells and muscles, recycling homocysteine and MMA into a useful building blocks. As a result the symptoms associated with B12 deficiency are many and diverse. Different people develop symptoms in different orders.
Recognise that there is a huge overlap with other conditions and that this means evaluating symptoms is difficult.
Sometimes it is easier to rule out other possible causes and if you are left with B12 deficiency then ...
PA is one possible cause of a B12 deficiency. The test for PA is prone to give false negatives so if it comes back negative that doesn't rule out PA as the cause of a B12 deficiency.
Thank you- depending on results and next weeks consultation, I shall certainly be formatting a letter. I sort of dread the confrontation- partly because I feel so brow beaten and low I think . I shall do it though... life has become intolerable in so many ways.
Hi you sound like me just 6 weeks ago. Similar consultation with GP . I took my health in my own hands read loads on this site and PA website and Dr Chandy site . Started injections I feel like I have woken up after living in a muddy fog for over a year. Still not back to my usual self but so so much better. Good luck in your journey x
It might help you to hand in a letter outlining all you want to discuss, symptoms and relevant guidelines, prior to your phone consultation( if you cant get a face to face). Have a copy of the same during the call then you can both be cross referencing.
Triage systems are quite a good thing as it means you aren't dependent on getting through on the phone before appts are all gone, and they can assess how urgent it is for you to see a GP. You can say you want to see a GP to discuss the results but it doesn't necessarily need to be that day. Our practice works like that and most people find it helpful. They may try and just give you the results over the phone but you can say you want to discuss it face to face, and get the print out of the test results first so you are prepared before you see anyone.
If you are in England ask them to give you access to your records online. You are entitled to it. If you have repeat prescriptions and appts online they just have to turn records access on. If you don't have anything yet, ask for all of it and they will give you a username and password. It means you can look at your records, work out what the test results might mean with assistance from people on this forum before you see a GP.
Thank you. I shall phone for results today and then ask for copy before appointment next week. We'll see how the triage works out! I think it just felt like another thing to "block" any progress when I first heard about it!
I am in the same boat as you, without it seems, a lifeboat. I have just had a B12 test result of 120 which is very low but he refuses to medicate until another test in 6 weeks off my reflux meds. Thank goodness for a lovely relative of mine who is very informative and supportive but despite her efforts, I feel like I am banging my head against a brick wall.
Oh bless you- there seem to be so many of us. I haven't had a diagnosis yet, but have already had a lot of valuable support here and from PAS.
What, oh what is the huge reluctance to diagnose and treat, to offer the correct blood tests and why the HUGE gap in knowledge with GPs?? I just don't understand it. I shall follow your journey with interest too! I wish you good luck....oh, and strength to battle!
A friend of mine said that Gps are only good for two things...to cure you or bury you, nothing in between. I am beginning to think that is correct. I believe the name GENERAL Practitioner is correct in that they know a little about many things but not enough about specific problems. If I go to my GP armed with lots of info I can see the "here she comes again, what now?" creeping over his face.
I have been suffering since the age of 35, undiagnosed till the age of 57 and I am now 68. I usually go for appointments but end up not saying all that I had planned to, a thing that happens to all of us. I recently wrote a three page letter to my GP prior to an appointment in order that he could see the whole picture. I was stunned when he said "Yes, I read your letter but what do you want me to do?"
I did come out with an appointment for blood tests but I felt very deflated and to some extent, lost
I plan a letter this week, detailing symptoms, all the bizarre diagnoses I have been given over the last few years and various print outs from the PAS website...plus some print outs links to treating patients with neurological symptoms and serum B12 within normal ranges, I can hardly wait to see how that will be greeted!
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