There are so many well informed people on this forum. I do hope you can guide me.
Four years ago my blood test showed B12-
300. Intrinsic factor test was positive and parietal cells negative. As soon as I knew my B12 was slightly low and I have a family history of pernicious anaemia I used a B12 sublingual spray. Over the last few months I have developed symptoms - tingling in hands and pins and needles with sometimes stabbing pains down my legs. I also get breathless on climbing stairs. I asked my GP if I could change from the spray to injections but he refuses saying that there is no evidence that I have pernicious anaemia. My last blood test a few weeks ago was 700 but this of course was with me using the spray several times a day.
I have bought some B12 injections.
I would be so grateful for advice. Thanks.
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mocr
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if you had positive IFA then that is pretty good evidence that you do have PA - the test may not be very sensitive (high probability of not picking up IFA) but it is very specific (not prone to false negatives.
Suggest that you clarify exactly what your GP means by 'no evidence' of pernicious anaemia - may be that he is confusing it with the B12 deficiency it causes - so expecting low B12 levels and probably also expecting to see macrocytosis - but macrocytosis isn't present in 25% of people presenting with B12 deficiency anyway ... Without some form of supplementation you will experience falling levels and unfortunately oral supplements don't work for everyone.
If that doesn't work then I suggest that you join the PAS and contact them for support
My History is ... The first blood test four years ago was taken when I went to GP with pain in both knees. I knew it wasn't arthritis because I had knee replacements. The GP I saw then thought the pain could be nerve pain and he had the blood tests done. B12 was 300 and I had a raised MCV. That doctor left and nothing was followed up. In view of my family history, my gran and my dad had pernicious anaemia I started to treat myself using the sublingual spray and taking folic acid every day, It helped but the pain in my knees was always there and a year ago I had a stress fracture of my fibula, I saw another GP and my B12 then was 800. I presumed this was because I was taking a high dose of the spray daily. I told the GP this but he thought it was okay. two months ago I contacted the GP to inform him that my symptoms had become worse e.g. Sharp pains and tingling down my legs and feeling as though hot water was being poured over them. tingling in my hands. my nails were brittle with ridges. my hair was thinning , I had digestive problems and I couldn't sleep. I asked if I could change to the injections instead of the spray. He said I would need to have a blood test first, I felt in despair as I knew my serum b12 would look okay because of what I was taking.
I do belong to the Pernicious Anaemia Society and so I contacted Martyn Hooper who advised me to write to the GP which I did. I carefully worded the letter but I have received a letter from the GP which was not very patient friendly. It was in this letter that he said there was no evidence of me having P A. Where the Intrinsic factor was positive the parietal cell was negative. He said that he suggested monitoring my B12 to see if it becomes low. He does not seem to understand that it will not become low because for four years I have been taking a B12 spray. I thought I had given the GP a good understanding but it seems not. I also gave him a copy of the guide lines which Martyn suggested I do. Alas, it seems all in vain.
not clear from what you say whether you have replied to the GP to point out that GPA negative does not necessarily rule out PA but IFA positive is a strong indicator that you do have PA. unless you had been supplementing close to the IFA test (which can result in a false positive). Have you contacted the PAS to update them on the content of the GPs letter and if so what did they say?
I have not replied to GP letter. He suggested I see another doctor in the practice for a second opinion. In my letter to him I thought I had explained quite clearly that my B12 test would be high because I was supplementing with a high dose of B12 spray. He does not seem to understand this . I feel he was angry and did not want information from the patient, I thought I had explained it quite well. His argument is that a positive IFA may indicate that there is risk of developing pernicious anaemia. I will enclose a paragraph from his letter
" I accept that you have had a positive IFA but equally a negative GPA. While this as I discussed with you may indicate that you are at risk of developing PA, it does not mean that you have this condition and this is why I suggested we should monitor your B12 to see if it becomes abnormally low."
I tried to explain that my B12 would not be low because I was supplementing with the spray. When I spoke to Martyn Hooper I asked if I should stop supplementing and have a test and he advised not to stop as my symptoms could become worse.
My test result before supplementing was 300. That is above low but I also had enlarged red cells at the time. That was four years ago. I have been supplementing ever since and the GP was informed of this. My neurological symptoms had become worse over the last few months. I thought I would now be better with the injections and I had asked the GP if I could change to injection. He wants me to have a blood test first and I had tried to explain to him that unless I stopped takin the B12 my blood result would not be low.
I think I will just get on with things myself as many others on the forum have had to do.
a second opinion isn't necessarily a bad thing - though I suspect the result is likely to be the same
It does appear from the letter that your GP has confused PA with macrocytic anaemia and B12 deficiency.
From then BCSH guidelines
Pernicious anaemia is characteristically diagnosed by the presence of anti‐intrinsic factor antibodies (anti‐IFABs) (Annibale et al, 2011; Bizzaro & Antico, 2014).
High titre IFAB may interfere with assays of cobalamin, leading to a false normal serum cobalamin level.
The algorithms provided in the study clearly show that IFAB positive should be treated with injections for life. IFAB being positive in the presence of serum cobalamin levels >148 pmol/L or >200 ng/L is included as biochemical evidence of Pernicious Anaemia.
Whilst it is up to you whether or not you follow up again with your GP I would suggest that you try writing again quoting the above as indicating that you do in fact have pernicious anaemia and requesting that you are treated accordingly. If he continues to feel that you should seek a second opinion then do that armed with the above - and please contact the PAS again.
The first test I had showed B12. 300. MCV was raised. This improved with taking the B12. That was four years ago.
I think my Dr did not like me giving him information so I feel I would only be more upset if I wrote to him again. I would not want a second opinion from another doctor in that practice. There is another GP practice in the area so I think the best thing is to register with them.
I will, like many others treat myself in the meantime. It is bad enough feeling so unwell but when you come up against such uncaring medical practice it makes you feel even worse. Thank goodness for the forum and people like you who can help us to get things into perspective and give us confidence and hope.
"no evidence of me having P A. Where the Intrinsic factor was positive the parietal cell was negative."
Is GP aware of family history of PA? PA can run in families. This is evidence, in my opinion, of a risk factor for PA.
Is GP aware that BSH Cobalamin and Folate Guidelines (link below) make it clear that in UK, parietal cell antibody test should not be used as a diagnostic test for PA. Think it also says that parietal cell antibody test can be negative in some PA patients.
Have you asked GP what is the likely cause of a positive IFA test?
"I have received a letter from the GP which was not very patient friendly."
Have you replied to his letter?
Link about writing to GPs about b12 deficiency
Point 1 is about under treatment of b12 deficiency with neuro symptoms.
Point 5 is about being symptomatic with an in range B12 result.
Flowchart and BMJ link below and BSH Cobalamin guidelines above , emphasise need to treat people who are symptomatic for B12 deficiency even if B12 level is within range. is your GP aware of these documents?
Flowchart from BSH Cobalamin and Folate Guidelines
NICE CKS link below, suggests doctors should seek advice from a haematologist for patients with B12 deficiency with neuro symptoms, has your GP done this?
PAS website has a section for health professionals. Health professionals can join PAS for free as associate members. Thought your GP might be interested.
I have written some longer replies on other threads, may be some useful info if you search for them. More b12 info in pinned posts on this forum including useful summary of mainly UK B12 documents.
Thanks Sleepybunny for all the information you have provided
I had told the GP about family history.
I did give the GP a printout of the guidelines as Martynn Hooper had suggested. I don't think he appreciated my doing that.
He did agree that my symptoms could be due to PA but there could be other causes. He suggested I see another GP in the practice for a second opinion. My letter was not sent as a complaint. It was asking for help and also giving him information but he did not appreciate this.
I will now get a nice cup of tea and work through the links you have so kindly given me. I really do appreciate it.
I have just looked at my calendar 2014 and realised the B12 result of 300 that the GP has given me was the second test, After the first test when I saw Gp ( different one ) he told me that B12 was low and MCV slightly raised and they wanted to check my liver so I had a GGT test and repeat B12 which was done a week after seeing him. He didn't tell me the result but the fact that because of my family history I immediately bought a Boost B12 spray and used it twice a day. Do you think that would have improved the result. I have been using that ever since but my recent symptoms were making me feel the injections would be better. I don't want to go back to that doctor, he is a bit frightening and not quite honest as he did not give me the first result in his letter. I will give the injections a go and see how I get on.
I know it would be hard to do, but maybe stop the spray until it's out of your system and then get retested. If you go to someone else with a 300, they might think the same way. It seems most only look at what the numbers show regardless of what you'e taking
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