As seems sadly to be the norm, my GP too has ruled out B12 deficiency & PA on the strength of blood tests falling within ‘normal ranges’, despite a 14 yr history of symptoms inc neurological deficits, maternal Pernicious Anaemia treated by B12 injection, & paternal & sibling coeliac disease (so absorption issues).
I have a diagnosis of depression, anxiety, CFS (all 14 yr history) & am being seen by neurology to rule out MS due to recently reported carpal tunnel/ulnar nerve like, numbness, pain, & pins & needles symptoms.
My iron levels were at the low end of normal (15?) so my GP reluctantly agreed to prescribe ferrous sulphate.
A concurrent (reluctant) & recent referral to the Sleep Clinic due to disordered sleep, exhaustion, memory issues etc seconded these findings & recommended boosting iron to the higher levels (150?) to help remedy severe Periodic Limb Movement Disorder which was detected from one of the studies carried out.
I have not asked my GP for actual copies of the blood tests results yet as having tried to broach the issue with her along with showing her the symptom checklist from PAS & their recommendations of what exactly we should be testing for, she has on 2 occasions ruled any B12 deficiency or PA out.
What experience have people had going private? I just don’t think I have the energy or fight left in me to campaign for something I myself do not fully understand, (despite the incredible resources available here & elsewhere), nor do I have the mental clarity or ability to retain the information I’ve read & then articulate it at my appointment time which are running at 6 week’s wait to be seen. Nor do I feel confident in driving my treatment in the nuanced way that it seems to need to be conducted.
I just don’t have faith that my GP is sufficiently knowledgeable or motivated to be, to properly help me.
I’m wary of thinking well just go private & miraculously I’ll be offered the protocols & treatment as recommended by the current literature & practise in the field.
Are there specialists & if so are there any published (regional) lists? As so many private practitioners also work in the NHS, is it again just hit & miss as to who you find that works in the informed way required to help properly rule in or out this deficiency.
Cost is obviously an issue so has anyone received private help initially & then used that to inform then receive subsequent treatment via the GP & the NHS??
Anyone’s thoughts /experiences appreciated.
Many thanks
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Sorry to read you are struggling. Has your GP also ruled out Thyroid issues with the correct testing. Low Iron - B12 - Folate and VitD often go hand in hand with Low thyroid.
Labradorfan, I am afraid that we can't provide recommendations of particular medical practitioners on this forum.
Unfortunately many on here have experiences of private practitioners who also knew little or nothing about PA and B12 deficiency. Unfortunately the symptoms of B12 cut across a number of specialisms and your probably better off looking for a GP who has a specific interest in PA/B12 deficiency but I am not sure how you would go about trying to identify one.
I would ask on what tests had the gp ruled out b12 defiency/PA.
The tests for PA are often wrong.
Homocystein levels and others are sometimes done too. You don't have to be anaemic to have b12 defiency. I didn't.
I tested negative for PA but serum test was low. What was your level?
Have you been taking b12 supplements?
Some doctors will trial you on b12 injections going in symptoms.
Ask how they will treat you otherwise?
I paid to see a neurologist as could not wait the 14-18 weeks to get my Brain mri read. I was having a battle to get more frequent injections. He put in his letter to treat as per bnf guidelines. I.e every other day until no further improvement.
The gp read the guidelines. They all disagreed on regime .
As you say all the private ones are NHS trained and often do both.
I don't think b12 specialists exist.
So it's hit and miss like you say. Will you get better treatment? ? More blood testscyes if you pay i exprct thst arnt done on the nhs lokr active b12 test. Tou should get more time. Or book a double appointment at gPs.
You just pay to get seen quicker . (All wrong I know) but at least someone had the NHS appointment.
Can you see another doctor?
I saw everyone in my practice (5)all seemed clueless and didn't think my symptoms were b12 related ti start with. My treatment was delayed by 5 weeks post collapse. Even a and e staff missed classic signs saying I was having a panic attack!!!!
List your symptoms you think caused by B12 defiency.
I was very unwell and my B12 was low ( 150) My GP said everything was normal . My symptoms were classic B12 deficiency. My numb feet “idiopathic “ I was sent on my way . I went to a private GP .He did blood tests and found that I had PA . Went back to my GP , who asked for a letter from the private GP , with the diagnosis , and I was then treated . This all took place over several months . I was getting worse and worse . It was a horrible time . So yes , if you do go to a private GP / consultant , you can get the treatment that you subsequently need from the NHS .
Thanks all for your replies & insights - I can’t believe how helpful they are.
There just seemed so much information to digest on this, to have to then use to campaign confidently for tests & treatment that you don’t fully understand yourself, when you’re feeling far from confident or capable of doing so.
But it’s given me the encouragement I needed that this really is the only way to get the correct help & whether it’s via purely the nhs or a combination of the two Wedgewood, it is possible. So thank you all.
I do understand Gambit62 how problematic it could be to recommend /promote practitioners on here.
So I’ve requested copies of my test results Nackapan & made a list of questions to ask my GP.
Also printed off & got my head around the guidance to practitioners & symptom checklists for PA & thyroid from Thyroid UK (thanks Marz) & going to enquire if any GP’s locally have any special interests in this area (worth a try!)
Can’t believe your GP disagreed with BNF approved treatment recommended by your neurologist Nackapan. It really does seem that at every stage of the process there are major obstacles to navigate.
So having been daunted & despondent I now want to know what my results & ranges actually are & get a sense of what they actually mean. And strap in for a bumpy ride.
I requested additional testing due to my high B12 with no explanation, the GP is very much on side regards wanting answers why my B12 has gone from normal in 2015 and 2017 to 100% and 88% increase.
Anyway after research and discussion with GP he went away to check what additional tests he was allowed to do and he said he could do the Methylmalonic acid urine test, now awaiting results, and I have checked with my private bmi hospital about what blood tests they can do and I have decided to get the others that the NHS do not appear to carry out through GP done next week, the cost for Methylmalonic acid blood test is £140 and I want a repeat B12 which is £78 my GP has written a referral to the laboratory and I can pop in any time mon-fri 9-4. I only have a choice of one private hospital where I live and no private labs, it might be worth you checking where you can get the other tests done because you will unlikely be offered anything additional by GP but they can and do refer if requested.
The correct testing for Thyroid is TSH - FT4 - FT3 and Thyroid anti-bodies TPO & Tg to rule out Hashimotos. Sadly not all the tests are done within the NHS and so people remain undiagnosed and under-treated due to over reliance on the TSH only testing. Private testing in the home is available - for more information click onto the link below and then Click onto About Testing to read about Blue Horizon and Medichecks ... used by 100's on Thyroid UK.
After an IFab negative result, GP said it wasn’t PA after all, wouldn’t treat it any longer.
Chatted to a fellow attendee at a PAS meeting (thanks!) , got the name of a private doctor, £85 initial consultation, £25 per injection, short course of (re)loading doses, shown how to SI, never looked back.
Got a new GP now who keeps the folate, iron, etc., where it should be, but won’t give jabs. Which is not an entirely satisfactory situation, but no longer a worry for as long as the channel to Germany stays open.
And if it closes, well then, as my American friend says, “We’ll burn that bridge when we come to it”.
I am so sorry for what you and your daughter are having to go through your dr. Sounds ignorant. There are special clinics now for chronic fatigue/Me and fibromyalgia - they will instruct Your to give GP to give a regime of B12 injections whatever her B12 level is. They have a more up to date attitude to B12 deficiencies. Is there one in your area?
My daughter had fibromyalgia for about 15 years and finally got herself referred to one in Epsom. They recommended a regime of b12. She improved dramatically.
But you have to have a GP referral.
Is there another dr you could see in your surgery who is more approachable and educated.
Low normal can be B12 deficient as the serum b12 contains only about 20% active B12.
Plus there are conditions in which the B12 can’t be transported into the cells to be used.
You can get homocysteine levels done privately and get a copy to present to your GP. B12 down = homocysteine level up. Concrete evidence. Neurological symptoms can show up years before anemia.
Hi thanks for your post. I’ve got a neurology appt in Feb ‘20 so am going to go prepared & see what their approach is to B12 & what scope exists for any specialist service.
When I asked my GP if I could be referred to a ME /CFS service she said no because a) there are non locally
& b) I’m too well to be eligible as the people referred are the ones who unable to even walk they are so unwell.
Hi, I don’t know if this will help but I’ve recently been seeing an osteopath, on first app, diagnosed pins & needles in hands/arms resulting from neck/spine, rather that carpal tunnel which I had been diagnosed, after three app no more pins & needles!
"have not asked my GP for actual copies of the blood tests results "
Best thing I ever did was to get get copies of all my blood test results. Some UK GP surgeries have online access to a summary of results/records. See your surgery website for details.
With relatives who have Coeliac disease, have you been tested for Coeliac?
If you were tested, were both recommended tests done; tTG IgA and Total IgA and did the GP tell you to eat plenty of gluten in more than one meal per day for several weeks before blood taken?
I think I had all the symptoms you have mentioned in your thread plus many others and apart from one set of B12 loading jabs could not get treatment. After years of deterioration I resorted to self treatment.
ME/CFS
Had this as a diagnosis plus fibro plus hypochondria plus psychosomatic symptoms and sadly was a very angry person as I knew there was a physical cause of my symptoms but no-one was listening.
Be wary of NHS ME/CFS clinics/services if you're in UK as NHS in some parts of UK views ME/CFS as a mental health condition.
Was told by ME/CFS sufferers that there are a couple of good private hospitals in UK that specialise in ME and related conditions.Don't think I'm allowed to mention them on forum though.
I believe I never had ME/CFS and that I was suffering B12 deficiency, gluten intolerance and possibly thyroid issues.
My feeling is that although ME/CFS is a real neurological condition, many people get diagnosed with it because some GPs and specialists do not know about, are unwilling or unable to test to exclude other possibilities .
Once I was diagnosed with ME/CFS all investigation into other possible conditions stopped. I had to be very persistent which upset my then GPs to get other tests to rule out other conditions.
Well since joining here I contacted & joined the PAS who pointed me to how to present your case to your GP & the supporting evidence to use & I’m speaking to them again on Monday - as when I rang it was out of there hours (unknowingly by me).
Since then I’ve been reading non stop & found the b12deficiency site really useful too.
I’ve read many of your posts on here that are really informative & come across the advice on what to include in writing to your gp specific to you, which makes a lot of sense.
So I’m amassing info at this stage - waiting to pick up copies of my blood tests so I can see exactly what has & has not been done.
I’ve asked for coeliac tests virtually every time I have had a blood test over this whole course & every time they’re negative but I don’t know which ones they’ve been doing & tbh because of my family history & eating habits I tend not eat much gluten in my diet anyway, hence they may not have even been reliable on that front. And no, no GP has ever bothered to mention to do so prior to a test.
I am even contemplating having the biopsy & have read up on which samples to request - which again are not necessarily done - to ensure multiple parts of the ileum (?) or bowel at least are properly investigated.
Because my fear is that I’ll be fobbed off with at best case scenario (like you) some b12 shots from the gp so as to placate me & then be told that I’m fine according to their tests, so stop wasting our time - when any other underlying cause for deficiency not be properly investigated, as I at the moment do not meet the criteria for PA.
I don’t want to take shots either via a medical professional or by myself & not be fully sure that what could functionally be causing any deficiency not have been fully addressed. And as they’re water soluble & from what I’ve read largely excreted in your pee, am concerned that I’ll be dosing up on yet another sticking plaster, that isn’t getting to the root of the cause.
I keep noticing that I’m telling myself that I’m going to once & for all find all these things out, & yet accessing even the correct medical professionals to be able to do that via any private route doesn’t necessarily seem that straightforward either!!!
TBH I had only in the past few years even heard about PA as my mother told me she was being treated for it & had been for some years prior. And from spending more time with her in recent years I can see how she is when she needs needs an injection & how different she is after. And I relate to it so badly.
I am going to check because I think she is only receiving them every 3 months & if so she’s not receiving the recommended monthly amount. And I am with the same GP which shows the reality of the ignorance out there & the battle I am faced with, if this is the case.
ME
I have a neuro appt in Feb due to carpal tunnel like symptoms, nerve , burning arms, numbness etc. The GP wants to rule out MS. I was hoping then to see what they say if anything about B12 & to broach the topic with them then in the hope that they will instruct the GP to run further tests etc.
While keeping an open mind, I do not think this is at all likely from the experience many & you have shared. But I am hoping to go in prepared.
So I am arming myself with everything I need to find out & then have decided to seek the appropriate testing privately & take it from there, as I cannot endure years & years more of this crap.
I do not feel confident really that even if some such ‘specialist’ were to inform my GP as to what I should be receiving, they are going to be knowledgeable enough to be properly able to manage this - with I assume the appropriate blood checks every so often etc & I find it hard to imagine they are going to be collaborative & take their lead from me (& why should they because I’m not medically qualified?) even though service delivery is meant to be patient centred & the patient is the expert type of thing, in reality they’re liable for your ‘care’ & if they’re not the kind of individual prepared to be curious, or have the time or motivation to, why would they?? What I’m saying is that I see it from their side too & really at a systemic level the whole organisation of health via a general practitioner IMO is at one of the roots of the problem here.
I share your thoughts as to ME. I too feel it is a very real neurological condition & yet is used as blanket term to categorise you if no other illnesses/conditions apply & as such what that condition even means, what treatment is required & how how you should be managing it, is of no concern to your GP or anyone else really.
I have been floored, angered & amazed by the literature on B12 deficiency & mental health & yet a person’s whole life can be determined by the outcome of a few blood tests, that are not even fit for purpose.
As for the anger - I think sadly I’ve suppressed all mine & turned it in on myself - because in the absence of any other explanation for my symptoms & wellbeing, like so many in here by the sounds of it, I’ve had to just accept that it is just me, my depression, my ME & I’ve stoically tried to do everything to tailor my life to it & appease, tame & endure it. To the extent that I have no life & that what life I do consists purely of trying to just functionally exist. (Said without any melodrama intended - as I’m sure you understand -it’s just a fact for us people with chronic conditions. Fact maybe but still not right.)
I question constantly how I know others who suffer from depression, but seem to manage to have more of a functional life than me. And that whilst I ‘have ME’ is this crushing tiredness, irritability, feeling like a zombie, immersed in a constant fog & cognitive custard really true ME? Or depression??
And then there’s the whole thyroid side of things & that angle to be investigated too. Oh god!!
I suppose amid all the light that this is shining for me & the potential for hope, I fear my tests may come back & show that there is no deficiency (even the all singing all dancing ones) & that this is yet another false alarm & that I’ll be back to square one.
But it doesn’t feel that way - mainly because in the short time I’ve been supplemented with ferritin, I’ve noticed an improvement in my cognition, & felt a bit of a spark of the old me returning (after all this time).
And I think at a gut level (possibly even literally!) I know there is some mileage in this, I just know.
I hope (know) you don’t mind that what was intended to be a normal reply has snowballed into a lengthy confessional!
The only concern on here is how much is possible to reply to everyone’s comments & advice as the ability to be able to is as we all know, somewhat compromised.
Might be worth taking flowchart with you as some GPs are unaware of BSH Guidelines.
Part of the problem is in some UK areas, GPs are looking at local guidelines on treating B12 deficiency and some of these local guidelines have not been updated to reflect what is in national guidelines.
I suggest tracking down a copy of local guidelines for your area and comparing them with national guidelines.
Worth getting access to or copies of your blood test results. Does your surgery have them online? Look on surgery website for Online Access/Patients access/Emis Access. My understanding is that you can also request access to paper records .
Should be information about GDPR requests on surgery website.
My understanding of NICE guidelines on Coeliac is that if patient continues to show symptoms consistent with Coeliac disease after negative tests, they should be referred to a gastro enterologist. See NICE Guidelines Coeliac disease link in other post.
Coeliac disease can present with purely neurological symptoms.
I used to put referral requests into brief letters to GP along with evidence eg symptoms, family medical history, test results, extracts from UK documents etc that supported request.
Does your current GP know that there is both PA and Coeliac disease in the family? Was your mum ever checked for Coeliac?
Having one auto imune condition increases the chances of developing others so it is possible to have both PA and Coeliac. Has GP excluded other possible conditions that have overlapping symptoms with PA eg Thyroid disease, Lupus, Hughes Syndrome ( also known as Antiphospholipid Syndrome APS) plus others?
"And then there’s the whole thyroid side of things"
I suggest putting any thyroid results on the Thyroid UK forum on HU. It's a very active, supportive forum.
In UK GPs often only test TSH which won't give a full picture of thyroid function. There are other thyroid tests they can do but local guidelines and finance and ignorance can place restraints on what GPs order.
Many blood tests you might want can be obtained privately in UK; NHS GPs won't always consider private results although a positive test in a private test might be a nudge to an NHS GP to order the same test.
Neurology Appointment
"I have a neuro appt in Feb due to carpal tunnel like symptoms, nerve , burning arms, numbness etc."
Has your current GP got a list of all your symptoms especially all your neurological symptoms?
Go well prepared for neurology appointment. Do you have someone supportive who can go with you; even better if they have read about PA and B12 deficiency?
It's my impression that doctors are kinder and more polite if a witness is present. I had several unpleasant experiences with doctors including being shouted at and wish I'd had someone with me who was prepared to speak up on my behalf.
I saw multiple neurologists both privately and on NHS and they all missed typical symptoms of B12 deficiency with the exception of one who raised it as a possibility but did not make a diagnosis due to majority of my test results being normal range.
When you see neurologist, make sure they check your proprioception sense (awareness of body in space). Problems with proprioception can be associated with b12 deficiency.
Two tests that help to check proprioception are
1) Romberg Test
2) Walking heel to toe with eyes closed
Vital that these tests are only carried out by a doctor at medical premises due to risk of loss of balance. Videos of these tests available on Youtube.
If no tests are done with patient's eyes closed then unlikely that proprioception sense has been fully tested.
Be prepared for ignorance about B12 deficiency and PA even from specialists.
"GP wants to rule out MS"
B12 deficiency can sometimes be misdiagnosed as MS and of course it is possible to have both B12 deficiency and MS.
There is chapter in Sally Pacholok's book "Could it Be B12" about MS and B12 deficiency.
NICE CKS link up page suggests GPs should seek advice from a haematologist for patients with B12 deficiency with neuro symptoms.
Blood Tests
There can be useful clues on Full Blood Count (FBC) tests as to whether B12, folate or iron deficiency are possibilities.
One of the signs GPs look for as an indicator of B12 deficiency is macrocytosis. Unfortunately, some GPs may be unaware that about 50% of people with B12 deficiency do not show signs of macrocytosis.
B12 deficiency ( and folate deficiency) can lead to macrocytosis (enlarged red blood cells).
Iron deficiency can lead to microcytosis (small red blood cells).
A person who has both B12 deficiency (and/or folate deficiency) plus iron deficiency may appear to have normal size red blood cells due to effects of iron deficiency masking effects of B12 deficiency.
PCA is not recommended as a diagnostic test for PA in UK.
Both these tests can be unreliable.
It is still possible to have PA with a negative result in IFA or PCA test.
About 50% of people with PA test negative on IFA test.
About 10% of people with PA test negative on PCA test.
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.
"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".
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.
"don’t want to take shots either via a medical professional or by myself "
I tried my utmost to get a proper diagnosis and treatment but when I had exhausted all avenues for NHS treatment I chose to self treat. For me it was an absolute last resort but I'm so glad I did.
I got to the point of spinal symptoms and dementia type symptoms and life felt unbearable. Took a long time to show improvements but so many of my symptoms have improved or disappeared. I think of all those wasted years.
"I fear my tests may come back & show that there is no deficiency (even the all singing all dancing ones)"
None of the tests eg serum b12, Active B12 (also known as Holotranscobalamin), MMA and Homocysteine are infallible.
If you've taken any supplements containing B12, results for these tests may be affected and it could make diagnosis difficult.
From personal experience I know that it is possible to have normal range results and severe b12 deficiency at the same time. Most of my serum b12 results were between 300 - 500 ng/L.
Link below is about being symptomatic for b12 deficiency with an in range B12 result. It is possible to have Functional B12 Deficiency; where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells.
If you look at the bottom right hand corner of the flowchart I linked to up page, it says that doctors should consider continuing B12 treatment if patient has responded to B12 even if secondary tests such as MMA, Homocysteine, Active b12 are negative.
Vital to get adequate treatment ASAP if a patient has b12 deficiency. There is a window of opportunity for treatment to work before neurological damage becomes permanent.
Is there a PAS support group close to you? They can be a source of emotional support and info such as helpful GPs in area. You do not have to have a confirmed PA diagnosis to join a PAS support group.
Don't worry about replying to everyone on a thread.
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.
Will NHS GP accept results of Medichecks IFAB test if positive?
Private bloods for B12 and folate
The NHS is a monopoly.
Further frustrations with NHS
