My GP has asked for the above test to be done as it does not say on records I have pernicious anemia. Bearing in mind I have had it since my early 20’s and was diagnosed in Ireland.
Family history, my mother, 3 sisters plus myself 3 nieces all have pernicious anemia. With 4 family members including my own daughter have under active thyroid problems.
Most GP's don't realise the PA test is notoriously unreliable. Because of this she will probably try and stop your injections. Most GP's have a mistaken belief that B12 can be harmful.
You may have a good doctor who will actually read the info you gave her but most of us who gave our doctors info found out they didn't bother to read it. They have a deep seated prejudice against 'Dr Google'.
I think you will end up like most of us with DIY treatment. Luckily there are many on this forum who can guide you. We don't have medical training but have plenty of experience and common sense.
If all they do is test your TSH it won't show up much at all. But arrange for the blood draw to be first thing, before 9am, and don't eat or drink anything but water from the night before. Don't take any thyroid medication until after the blood draw or you will have a false high reading. Last levothyroxine dose should be 24hrs before a test. This is all patient to patient information. Don't expect a GP to understand this.
People with normal thyroids and no medication will usually have a TSH around 1 or just above. Those on optimal thyroid meds will probably have a TSH of 1 or below. If it's more then you likely need more meds, but you also really need more tests.
FancyPants54 Thank you for your input also. At the moment I have not been diagnosed with any thyroid problems it is just that so many family members have under active thyroid problems while others have pernicious anemia and some have both! I wanted to be checked for it again as I should not be feeling like I do. I had a total knee replacement 2 years ago and appear to be going downhill since then!
You are right to want to check again given your family history and no, a knee replacement should have given you a new lease on life, not made you feel ever worse. Getting a diagnosis of hypothyroidism can be hard. Hence the instructions for when and how to test so that your TSH level is at it's highest for the day. That gives you a better chance of diagnosis given the GP's reluctance to look at signs and symptoms and to rely solely on TSH.
Thank you so much for your reply. The reason the B12 was being challenged was immediately after my last B12 injection the nurse took a blood test to check my B12 and it was over 2000. I did explain to the GP while on B12 injections my read would of course be very high.
I did send her the links from the site and my results were only updated today so I am expecting a call to be update re my results.
Nackapan What I mean re the B12 injection is I feel the frequency of the injection is not improving my symptoms . I had my injections stopped for a period when I came to UK and I got an urgent phone call to attend my old GP practice and was given which I now know to be a loading dose. Unfortunately I did not have this wonderful site then to discuss it. I think my loading dose was just stopped without all the symptoms being resolved.
I will be looking at self injecting soon Ithink. I had already asked if I could. It might be the best way to go.
I suggest that when all medical routes fail, self-inject and see what happens. Because B12 is not toxic at high levels there is no risk involved just the enormous relief of being self-empowered. Then you will find out what works from your symptoms. I resisted injecting EOD but now I do and the improvement to my health and life is remarkable.
Orchard33 Thank you for your reply. Yes I have been considering SI for some time now. I was hoping the GP would allow me too first and then get the confidence to buy my own and increase the frequency. Maybe I might have to do it sooner than I anticipated. I am such a coward tgat is all that is stopping me. Lol
It is almost painless and you can find how to do it on YouTube. If you know a retired nurse ask them to be there the first time, or someone you know who does it.
I was and most of us were coward, but that's why we are here cheering you on!!!!! It's totally WORTH it! I've improved so much. We do so empathize with your hesitations esp when not encouraged by the GP.
B12life Aw thank you so much. I just have so much going on in my head it just feels like another knock. When I have my next blood test at the end of May I need to pick myself up and be prepared for battle. Thank you all so much for giving me the strength to fight on!
The Intrinsic Factor Antibody test is only positive in around 50% of cases of PA; the other 50% still have PA. So, as a test it's helpful when it's positive, and give the doctors more time to look at the other 50% of patients.
Did you have other blood tests before you started? Were you ever anaemic? [many folks aren't] but if you had a Megaloblastic Anaemia showing Macrocytosis [large red cells, raised MCV] then the B12 injections should have sorted that, providing you weren't folate deficient at the same time. The other symptoms can take much longer and require more frequent injections, but don't give in; keep at it! Keep in touch.
FlipperTD Thank you for your reply. That is good to know only 50% of people with PA test positive! Yes I have had some blood tests recently. I did post my results on here. (Sorry I do not know how to link to them) I have been put on Vit D tablets and folic acid 5mg as both were low. I am due to have another blood test within the next 2 weeks before my B12 injection is due. This is for B12 , Full blood count and Thyroid function test. My last B12 test was over 2,000.
I will certainly be putting my results on here for advice.
Low folate can cause a b12 deficiency so increasing that will help. Be sure to take methyl folate (5-MTHF) not folic acid as this is more bioavailable than plain folic acid.
Need to rephrase your discussions with doctor then, I think. Focus on your symptoms (in order of neurological symptoms first) and then diarise any change in symptoms in fays following injetion. Be totally objective.
And if doctor still won't increase frequency then worth buying your own supplies and learning how to jab yourself like many of us have to do.
Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.
May be worth discussing with GP that under treated B12 deficiency from PA and other causes may lead to permanent neurological damage including damage to spinal cord.
This may make them think twice about stopping injections.
PAS article about SACD, sub acute combined degeneration of the spinal cord
Sleepybunny Thank you so much for your very detailed replies. It was your links that you gave me previously that I sent to the GP. She said they followed the Nice guidelines. I have other health issues too which include arthritis in my spine, bulging discs and trapped nerves. Unfortunately since my previous GP moved away we were transferred to a large practice that has about 12 GP. In the 2 years since this happened I have only had 2 face 2 face appointments with a locum. All other appointments have been by phone or with the nurse for the B12 injections. I assume the GP who ordered these test (this was a phone appointment) will wait until I have the other blood tests done before she contacts me. Thank you so much for your detailed responses they are extremely helpful.
Oops accidentally deleted my previous post. Sorry.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
I suspect your GP surgery is under pressure from management or the ICB (Integrated care Board) or Health Board to reduce the number of people on B12 injections....probably cost cutting.
Maybe you could ask your GP if there is a review of people on B12 injections in your area or contact the ICB or Health Board and ask them.
I'd urge you to find out what's in the local B12 deficiency guidelines for your ICB/Health board. If you can't find them online or by searching forum posts here then best bet is to submit a FOI (Freedom of Information) request to ICB/Health Board asking which b12 deficiency guidelines are being used locally and for a link to or copy of them.
I did type a lengthy reply, but froze my comuter and lost it ! maybe a brevity hint !
So i'll be brief against my own nature -
Advice given here is kind, helpful, supportive (and vital) but I understand why you would want NHS onboard too. I felt the same. It is worth trying.
Look at the symptoms lists available. Sleepybunny has given links to some more realistic and comprehensive symptoms lists. Going with symptoms depends on what your GP believes the symptoms are. Most GPs have no idea of the range and severity - and so waste an awful lot of time and money looking for something else, something "more serious".
Fine - we all want eliminations, but not without concurrent treatment of the most likely cause if harmless. Consultant appointments are costly, slow to arrive and not all consultants are familiar with b12 deficiency symptoms or effective treatment. Can be quite a disheartening journey.
Look at the current medical guidelines - again, sleepybunny has provided links. NICE , BNF, BCSH - these are where GPs get their advice from on symptoms, treatment etc. Testing of B12 after injections have started is NOT advised - as my own GP said ; "pointless".
If my GP had not followed her own observations, had not listened to me and believed me, I would have continued to deteriorate. This can be difficult - a GP can be restricted by the practice, by poor advice, by lack of knowledge - so a symptoms list, a previous diagnosis, a family history, a copy of medical guidelines might help your GP to help you.
If your GP believes you, there must be a cause - so if it's not pernicious anaemia, what is it ? And if you are sent on the elimination route, why not first reinstate your previous treatment, as it has proved so far to be harmless (if ineffective) ?
This might just be a question of frequency. A "maintenance" dose implies that you have reached a level of symptom reduction/ elimination during "loading" that you would be happy to maintain, and that the chosen frequency is proving able to maintain that. Neither of which appear to be true for you (yet).
If all of this gets you nowhere, at least you tried. But please don't deteriorate, just to prove to your GP that that is what happens if untreated. This risks nerve damage that cannot always be repaired, and in any case, may not change hearts and minds.
Well, I failed spectacularly in keeping that brief - but I wish you well and hope it helped.
Cherylclaire Thank you so much for your very detail reply also. I will go through all of the links. I do think I had not reached my maintenance dose and this is why I am always trying to play catch up. With my previous surgery I was so lucky to have just 1 GP who was excellent and took the time to listen. Now because it is a much bigger surgery I do not know any of the GPS yet.
Hopefully this GP will follow up with me and maybe then I will start to see some positive results. I will have plenty of reading to do before I speak with the GP thanks to the wonderful people on this site.
Yes - I do think it is worth getting a better understanding of what you are dealing with, the limitations of various tests, treatment etc. It helps to know enough to be able to ask for certain tests or have a discussion about where your GP's investigations are heading re secondary care tests etc.
I found that the GPs and even the nurses had very different attitudes to treatment of B12 deficiency -because they had varying positions regarding the severity and range of the symptoms. I know this is just about education and training - but it made some of them appear very uncaring at times when I was desperate for help.
Luckily not all the GPs or nurses in a practice are the same.
There are two populations of B12 Deficiency patients, based on symptoms:
1) B12 deficiency with hematologic symptoms;
2) B12 deficiency WITH NEUROLOGICAL symptoms.
There is very little overlap in symptoms.
Assessment of the two B12 deficiency symptom types is mostly different.
1) B12 Deficiency with hematologic symptoms is primarily based on results of lab tests.
2) B12 Deficiency with neurological symptoms often produced lab test results in the reference range, even when symptoms caused by nerve demyelination are severe. Therefore, diagnosis is clinical, based on patient responses to physician inquiry, and on what the physician can detect by neurological symptoms screening.
Treatment of the two populations is quite different:
1) Treatment of B12 deficiency with hematologic symptoms is simple and the symptoms resolve readily. Treatment is daily injections for a week, weekly injections for a month, then injections monthly or even less frequently.
2) Treatment of B12 deficiency with neurological symptoms is complex, and symptoms can resolve very slowly, as slowly as over the course of years. Treatment (as apparently stated in British national healthcare standards) is an injection every other day or twice a week, for two years, or when no further improvement (even on the glacial pace just described) is seen.
Doctors tend to only prescribe treatment intended only for patients with hematologic symptoms, regardless of the presence of neurological symptoms, disregarding NICE and other printed treatment standards.
I suggest supplying your physician with the article "The Many Faces of Cobalamin (Vitamin B12) Deficiency".
WiscGuy Thank you so much for your very detailed explanation. I need to do more reading to try and understand more about it all! Thank you to all in the community for your very detailed responses.
I really wish that UK treatment guidelines advised 2 years of every other day injections for those with neurological problems. In fact the suggestion that a review of this frequency be held after three weeks, to my mind, leads GPs to interpret this as the opportunity to stop frequent injections - either because they have worked or because they haven't.
IF the aim is to gain as much as possible of your old self back, which is what one would expect - by elimination or at least reduction of symptoms in frequency and/or severity - then surely a three-week trial for completion of nerve repair would be unlikely to reveal much in the way of recovery. A subsequent "maintenance" dose of an injection every 2 months at this point would provoke a setback, surely.
My GP decided to continue my 2-per-week injections for six months, because she could see that I was getting better. She was delighted - some of the nurses must have been furious !
Yes, I would agree that nerve repair would likely take years. You'd want a couple of years, wouldn't you, before you gave up looking for your former self ? Why maintain only half of what is actually possible to regain, given time ?
We are aware that there are people on this forum who have to live with the results of permanent damage to nerves. Whether through late presentation, late diagnosis, rapid deterioration or just bad luck, I don't believe it should ever be due to undertreatment or early curtailment of a treatment frequency that could, given time, have improved quality of life. Isn't this all hard enough ?
I do not believe that there are only two categories of B12 deficiency patients either. If we are basing this purely on symptoms, I'd have to say innumerable. And therein lies the problem.
Drives me nuts to read B12 is easily treated. It is if the symptoms are not neurological. I wonder if it is not a matter of that the symptoms progress if not treated when the symptoms are just hematologic.
I hope I have included everyone who commented on my post in my reply.
I logged into my online GP account and saw the following entries.
Referral outHospital Choose and book advice and guidance requestCoded entry
Choose and booking enhanced services administration (XaMJa)Coded entry
Choose and book advice and guidance request (XaYv5)
I panicked when I saw the entries today and rang the surgery. The receptionist spoke with the GP’s secretary who advised her it means the GP is getting further information from I think she said the haemoglobin department. I had myself so worked up by that stage as I thought I was being referred somewhere and wasn’t told about it. I wonder is this a good or a bad thing that she is asking more questions? Any thoughts on this please?
PLEASE NOTE: There has been a change in Ferritinreference ranges for some age groups.Ferritin results should be interpreted togetherwith the clinical picture.
HbA1c >=48 mmol/mol is diagnostic of DiabetesMellitus (DM).
If asymptomatic repeat HbA1c within2 weeks for confirmation.
If repeat <48 mmol/molnon-diabetic hyperglycaemia is present, please seebelow.HbA1c 42 - 47 mmol/mol indicates
'Non-diabeticHyperglycaemia' (NDH) with high risk of developingType 2 DM. Lifestyle changes are advised andrecheck progression to Type 2 DM.
If NDH resultis within the last year, please consider referralto the National Diabetes Prevention Programme.HbA1c < 48 does not exclude diabetes in patientsdiagnosed with plasma glucose testingHbA1c < 42 mmol/mol does not exclude ongoing riskof diabetes.
If patient is clinically high riskfor developing DM, suggest repeat in 1 year.***
Please note anything that alters red bloodcell turnover will make HbA1c results unreliableeg anaemia, B12 deficiency, renal failure, recentblood transfusion
Sleepybunny Thank you so much for the heads up. Apologies I did not realise there were ID numbers in the above. I have managed to bring my blood test forward to 19th at 8am so I can go fasting only drinking water as had been suggested in this thread. I am anxious to see what those results will be.
Sleepybunny All it said on my results were borderline. I did not have any follow up. I do not understand my test results. Is this in connection with my kidneys maybe? The reason I ask is I have had repeated kidney infections. My daughter has had to have 1/3 of her kidney removed due to diseased kidney. This was a locum GP I had seen.
My bloods details below were repeated 15/11/2022 just over a month after the above test. This was the results. it said satisfactory on the report I would love your opinion on these too please.
SpecimenSpecimen Type: BloodSpecimen Reference#:
1Specimen Providers Comments: (Interim Report)Collected: 15 Nov 2022Received: 15 Nov 2022Provider
Pathology InvestigationsClotting screening test
One stage prothrombin time 11.6 Seconds [9.0 - 14.0]
Partial thromboplastin time activated 29.8 Seconds [26.0 - 38.0]International normalised ratio 1.0 [0.8 - 1.2];
Therapeutic range: 2.0 - 3.0 for PE, DVT, AF, MI.
Therapeutic range: 3.0 - 4.5 for Prosthetic heart;
Normal range: 0.8 - 1.2valves and recurrent VTE.
Activated partial thromboplastin time ratio 0.9 [0.8 - 1.2];
Therapeutic range for Heparin therapy: 1.5 - 2.5; Normal range (no treatment):
0.8 - 1.2eGFR using creatinine (CKD-EPI) per 1.73 square metres eGFR using creatinine (CKD-EPI) per 1.73 square metres 63 mL/min [> 60.0];
Renal function probably normal when eGFR >60 withno other evidence of kidney damage.Interpret with caution in elderly, pregnant andamputees.
Sleepybunny Thank you for your reply. No one has mentioned anything to me about the results. I did try to Google this and had found out about CKD stage 3. I mentioned to the nurse when I was having a B12 injection about this and my daughter having had 1/3 of her kidney removed. I wondered if this could be connected to kidney disease for me and she just said not to worry that comes with age and it is no harm at all.
I had my blood test on 19th as I am getting so anxious about it all.
I have only had 1 result back so far.
SpecimenSpecimen Type: BloodSpecimen Reference#:
1Specimen Providers Comments: (Interim Report)Collected: 19 May 2023
I suggest comparing this set of results to any previous results for Full Blood Count.
Look for trends in results.
Maybe FlipperTD might be able to comment on the Full Blood Count results.
Both B12 deficiency and folate deficiency can lead to cytosis (lower than normal numbers of blood cells).
It might be worth starting a new thread with the Full Blood Count results. Replies on older threads sometimes don't get noticed. Include a link to this thread if you start a new one.
Link about macrocytosis (enlarged red blood cells)
Sleepybunny Thank you for your input yet again. I will start a new thread and input my blood results sorry it is very mixed up looking here!
The results are marked as normal and the second test as satisfactory on my GP’s website. Which means the GP will be happy with them! I have read on some of the causes could be alcohol abuse. In my case I have not had a drink for at least the past 5 years so this would not apply in my case. 🥰
I will try and put all my blood test results together in 1 thread in date order and when I have my phone appointment I can have my list of questions ready.
I assume the appointment will be to decide if she thinks I have PA. (Which was confirmed approx 1988 in Ireland) before I came to UK. If the GP thinks I should continue with my injections or stop them or maybe even increase them.
"the appointment will be to decide if she thinks I have PA."
Have you got a list of bullet points that point to having PA eg
1) Diagnosed in Ireland (date of diagnosis if possible and name of health professional)
2) Family history of PA (maybe have list of blood relatives with PA)
3) Symptoms suggestive of B12 deficiency
etc
If the appointment is unhelpful, consider writing a letter to GP with above info in it and point out the consequences of inadequate treatment or withdrawal of treatment.
Sleepybunny Thank you so much for your reply. I will get together my list of bullet points. I will update after the appointment. I might be very surprised 😲 by the call. I can but live in hope🤣
I have had another test result which I will add here.
This was retesting my results (as my previous test taken 23/03/2023 (over 2,000 B12 level) had extremely high B12. )
This test was taken 19/5/23. B12 was 959
I will add my previous test results below my latest results, as looking at both tests my B12 appears to have dropped dramatically from my blood test 23/3/23 to my test 19/05/2023.
SpecimenSpecimen Type: BloodSpecimen Reference#:
1Specimen Providers Comments:
REQUESTED TEST SETS COMPLETECollected: 19 May 2023
I have a phone appointment with my GP on 09/06/2023. Any advice on the above results would be appreciated. Would my drop in B12 in an 8 week period be usual?
I wonder if the strain on your body having a knee replaced 'used up' your B12. It seems to me that it is logical and justified to self inject .5 mg of hydroxocabalamin every day SC and see if there is improvement. Assuming all the co-factors have been tested and are at least in range.
Yes it does take a leap of faith to self inject.which always takes courage. Both the leap and wondering where you will land. With B12 there happens to be no negative on landing and a whole lot of positive.
WIZARD6787 hi , thank you for your reply. I had the total knee replacement in October 2020. I think it is looking more like I will have to take a leap of faith and self inject! I need to have all my facts written down for my GP phone appointment as I will try and see what her plan is first. Either stop or increase my B12 injections. When I know that I can then decide how to go forward.
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