I've posted before re my high b12 level & had some really helpful replies but just couldn't get to the bottom of it & constantly had the shutters pulled down by my gp surgery. Brief background - diagnosed with low b12 (139) - no pa diagnosis. Gp started me on b12 injections for about 5 years then suddenly pulled me off them over 2 years ago because he said my level was too high 🙄. 2 years down the line started having neuro symptoms muscle twitches lethargy, very depressed, pins & needles & this coincided with very bad heartburn to which I was referred to gastro. Had some blood tests & b12 came back high 1900 without supplements of any sorts. Asked gp for b12 injections to be reinstated after the help i had on this forum & took various paperwork which stated that b12 should be for life & even with a high b12 level i could still be deficient due to my body not absorbing it properly (it's a complicated process & I cant even begin to explain it but it can & does happen!). Gp said "no" "no" & "no" again how dare you keep asking for injections when your level is through the roof!
One visit I saw a locum gp & she took a bit of interest in my high b12 & recommended I have a "special " blood test to see if I was absorbing b12 properly 👍she called it "macro b12" (b12 complexed to immunoglobulin) apparently! I had the blood test & it was sent to Consultant Chemical Pathologist). I heard nothing for a month so I phoned my surgery who couldn't find any results on the system so I made a telephone appt with my gp who never phoned me at the allotted time but a week later. Almost accusatory she told me the blood test was normal & i couldn't have the b12 injections reinstated & please stop asking. Oh & would i like some antidepressants?
Meanwhile I was having gastro tests scans etc to get to the bottom of the heartburn. Nothing really turned up apart from esophagitis & a strange condition called pancreas divisum. I have no idea whether this affects absorption of b12 as I have yet to look into it. Anyway, 6 weeks ago I had my follow up appointment with the gastro & I mentioned how awful I was feeling & showed him my twitching muscles!
He said he would have a word with the Consultant Chemical Pathologist & let me know what he says. I went away & thought nothing of it. 2 weeks later I was called to my surgery & told my b12 injections needed to be reinstated straight away. I had a copy letter from my gastro who told my gp he had spoken to the CC Pathologist & he had diagnosed me with macro b12 earlier in the year!! My gp had lied to me & I dont know why.
Sorry to bang on but high b12ers dont give up - there is always a reason for high levels- some quite serious and they must always be investigated.
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Irismay
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Thank you irismay for telling us your story . I’m so glad that your injections have been reinstated . It’s due to your persistence, which is so difficult when you don’t feel well . Excellent news !
Do you know , I get so confused with all this b12 business! I am currently under gastro care at the hospital where they FINALLY may get to the bottom of my b12 deficiency as I have never had a clear diagnosis. I've no idea how they test for cellular take up of b12. I think it might be a via intrinsic factor blood test. I have copied & pasted below the best explanation I've found. Whether your gp offers these tests I dont know or maybe you have to get referred to a gastro.
Measurement of serum vitamin B12, either preceded or followed by serum methylmalonic acid measurement, is the first step in diagnosing pernicious anemia (PA). If these tests support deficiency, then intrinsic factor blocking antibody (IFBA) testing is indicated to confirm PA as the etiology.
I will be asking my gastro the same question!
Good luck & sorry couldn't be much help. If you pose the question to the whole forum someone will enlighten you further as they are extremely knowledgeable & helpful.
Thank you so much! I have other health issues and feel it might be the last piece. Please, pkease, please keep me updating on some new infos! Take care
So sorry you have health issues. It may be all wrapped up with b12 & pernicious anemia. That's what I think too - I have gut issues, joint issues & other weird stuff! it's such a long process! If I can get any new info i will pass on to you. My next appt with gastro is 27th May - seems such a long time away!
Blimey! How bad is your GP!? Funnily enough my daughter is awaiting a result for IFA. Her previous GP, who, on the surface appeared to be very good said it came back negative. New GP looked at results and the IFA results had not been received, since last November! On the plus side, she is being treated for B12d, her level in November (2018) was 122. Glad to hear you’re back on the injections and wishing you a steady return to ‘normal’ health.
Yes , in a way I agree , but I am guilty in the same way . I didn’t complain when I should have . We are all very reluctant to go down the path of an official complaint . First of all doctors close ranks when a colleague is complained about. And there are repercussions I can assure you ,if you get into a doctors “bad books” .
I remember asking members who self-inject, if they told their doctors , and a resounding majority did not , they said for fear of annoying their doctors . That is the hold that doctors have over you . It is ridiculous .
If I hadn't of 'taken it up' with my surgery on the advice to get more jections from here I'd be even more ill. It was extremely difficult as I was so ill . I remember just sitting calmly (so as not to fall over! ) until I could speak to someone about the refusal of a B12 injection that day and frequency. I sat for ages . Asked to see the practice manager. As sitting with a hat on and dark glasses heard my name being called. I went straight into the doctors room only then to realise it was the practice manager shouting bot even having the curtisy to come over. To my suprise the doctor saw me and read the bnf guidelines in front of me. She put me on alternate days again. I was shaking line a leaf . The nurse sausage she wasn't being awkward but 3 doctors shed asked refused and said I had to wait 3 Months. The cab ride home was diffucult as I couldn't speak as been so stressed and at the time balance and walking a problem. Yes I shouldn't have been put through that. I think I'm labelled as awkward. I hope at least that doctor more aware of b12 treatments. I still see her. She still is at a loss what time do with me but she always asks how the b12 injections are helping. She said she was learning from me.
I agree probably easier to inject yourself and take control. It didn't evenue cross my mind at the time
It is so difficult to argue one’s corner when you are feeling so very ill .The weird feelings , the confusion , the weakness etc., all combine to make one feel like giving up . I thank the Lord that I found this site . It’s a life -saver . Best wishes "
Thank you so much Daffodi1 & I wish your daughter the very best. I did try to move surgeries at one point but we only have 3 in the local area & they are all straining at the seams & not that brilliant either. I think they all stick together & back each other over complaints anyway. I have had previous experience with this with my daughter- it wears you down in the end!
Yes it’s a sad state of affairs. Don’t get me wrong I have a great deal of respect for the medical profession, in particular GPs who are over stretched and have to have such a broad knowledge, but someone who has blatantly lied!? But I also agree with you and wedgewood hence my energy/inclination reference. Perhaps the GP will be a little more attentive and understanding in light of the Consultant Chemical Pathologist’s findings. Best wishes.
I'm afraid I could not leave it if someone had lied to me. I personally would speak to the practice manager. There been a few mess ups with my surgery and it was the locum who sorted it . I was wrongly prescribed. I happened to speak to the locum as couldn't work out why I felt extra ill. If desktop with in a calm way things can be sorted. Closing ranks happens but normally when dealing with aggression ect. Yes it's a hard profession to be in. It doesn't have to be an official complaint . Doctors must learn by their mistakes like everyone else else. A family member actually had an apology for low b12 being missed. I thought that rare!!
Hi Nackapan - wow you've certainly been through the mill. I also regularly read your helpful posts. I have made an appointment this morning to see a gp at my surgery to discuss the gps phone call I had about the macro b12. I do feel as if i need to sort this for my peace of mind. Only trouble is I have to wait until the end of September to see someone 🙄. Best wishes to you & good health.
The reason I told my GP about self-injecting was because I wanted her to be able to see and understand how and why I was getting better. I also knew that she had done her best to find a frequency that would stop me getting worse, and sent me to consultants when she could not find one.
When the haematologist (who had told me that B12 was toxic, carcinogenic and highly addictive -but of course failed to mention any of this in her report to my GP) decided that my GP should not be giving me more than 1 injection every 2 months, I had no other choice since I already knew that this frequency was inadequate and would lead to deterioration again.
So although I get 1 injection every 2 months from the NHS, I am also self-injecting every other day. It has not been a miracle cure, just a steady slow return : no day yet without symptoms, but that is my next goal.
I was diagnosed with B12 deficiency, then functional B12 deficiency when B12 (after 1 every 3 month injection regime started) was >2000ng/L, but symptoms still getting worse and MMA found to be raised. This was confirmed by the central hospital laboratory that carried out the serum MMA test. Renal problems had already been ruled out.
There is one other patient that I'm aware of at this practice who has the same diagnosis: apparently she is able to manage on 1 injection every 3 months and has done for many years. Yet the only research on treatment of functional B12 deficiency that I could find (Talbot and Turner) would suggest that on this frequency, one might only expect no further decline. Is it possible that this patient self-injects without telling the GP ?
While we do need to be honest with GPs in order to help them to help us, this would depend entirely on having built up a relationship of mutual trust. Find a GP that you trust and stick with them - this is often a longer journey back than you could imagine.
Saw a different GP yesterday- and my partner mentioned my frequency of injection: he absolutely freaked, haha: won't be going back to him ! To change his opinion on how harmless B12 is, I might well have to educate using the "decrease and deteriorate" method, and I'm really way too far down the line for that !
Thanks for sharing your story Cherylclaire. My journey pales into insignificance listening to you all and .your stories & symptoms. I sound like the "the other person" at your surgery. I had 3 monthly injections for years & seemed to manage quite well on this dose alone. I'm hoping now they've reinstated same this will be enough if it starts getting complicated I wont know what to do! Best wishes & good health to you.
I have been very lucky with my GP and believe that I'm now getting slowly better.
I am sorry that your GP has treated you so badly and had to be brought to account by consultants. Did this GP send you to see them or did you have to pay for that ?
I am glad that you were doing so well for so long on 1 injection every 3 months (surely proof alone of correct approach -if proof were needed! ) and hope you get "reloaded" after all this time so that you can get back on track as soon as possible.
And I am really, really hoping that you can find someone more humane to deal with your problems at your practice in the future. Or at the very least, a GP who is aware that there is no point to testing your serum B12 once injections have started.
It must be tough and quite lonely at the frontline for GPs, but this condition can be frightening, lifechanging - and it would really help if you didn't have to fight so hard on top of that, wouldn't it ?
Hope all goes well from now on- let us know, okay ?
It was only by chance that I was having separate issues with my digestives that my gp referred me to have an endoscopy & at the follow up appointment with gastroenterologist I mentioned my high b12 & related symptoms, particularly my twitching, which was actually in overdrive on that day so I was able to show him! The consultant decided to get advice from Consultant Pathologist. The CP said I had had a blood test earlier in the year which was suspicious of "macro b12" which I think means a functional b12 deficiency but I'm not sure so I need to get that clarified by my gp who incidentally told me that the blood test sent to the CP was normal back in April so I need that clarified as well.
It is such a shame we have to work so hard to get people to actually hear what we are saying. I do appreciate the gps dont know everything about everything & I woulnt like to be in the firing line every day but they should be there to help make us feel better instead of making us feel like a nuisance as soon as we walk through the door.
I will certainly let you know what happens, if anything, after I've seen the gp at the end of September. Xx
They found that all of their samples (with high levels of serum B12) had the B12 bound to IgG. Some of those samples had more than half of the B12 bound to IgG.
The results don't really seem relevant to anything unless you know how much B12 is bound to IgG in samples with normal, or low, levels of B12.
Did they check to see if their technique could differentiate B12 bound to IgG from that bound to transcobalamin or haptocorrin?
Yes, also unsure of the purpose of this, fbirder : do you think they are looking at whether the IgG is binding the B12 surplus and treating it like a virus - disabling it ?
Overenthusiastic antibodies ?
Like you said, no norm established first, so how could they tell?
Thank you very much for your support. I am going to see my gp yet again as I am more confused than ever. I need a proper diagnosis & a decent explanation but I can see them building that brick wall already.....i
Keep copies of any communication eg letters between you and GP surgery .
Probably worth getting a complete set of medical records/test results before starting complaints procedure. Sometimes things go missing from files. There will probably be a charge for printing these out. Can be very interesting to see what had been written by GPs in past.
GPs have to correct factual inaccuracies eg wrong name, wrong date of birth etc. They do not have to change a diagnosis just because a patient disagrees with it but patient can request that a comment is inserted in records explaining that they disagree with what has been written. I suggest any request to change records is submitted in a brief, formal, signed letter to GP and practice manager( and keep copy of any letters).
Access can be denied if GP etc thinks that to allow access could cause you harm. You do not usually have to give a reason for wanting access but I think you are supposed to tell them if you are planning an action for clinical negligence.
I've included a lot of other B12 info below as I don't think I've replied on your other threads.
Have you checked your medical records/test results to see if you were tested for PA?
Did GP ask you questions about your diet?
B12 rich foods include meat, fish, eggs , dairy, foods fortified with B12. Being vegan or vegetarian can be a risk factor for developing B12 deficiency.
Tested for Coeliac Disease?
In UK, two first line tests are recommended.
1) tTG IgA
2) Total IgA
NICE guidelines Coeliac Disease (2015 version) recommend testing anyone with unexplained B12, folate or iron deficiency.
"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".
There's a recently published book " " which I haven't read yet, but plan to.
"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
Hi Sleepybunny - wow thanks so much for your very detailed post - it's just fantastic of you to take time out to write. I do follow your excellent posts as well on this forum.
I tried to find out about this macro b12 but as you said there isnt much out there so I'm not really sure what blood test they gave me! Ive ,made yet another appointment to see a gp to discuss the whole thing as I feel more confused than ever!
I've had a celiac screen & it was negative & I feel I've had iga tests as have attended rheumatology clinic over the years with bone marrow edema, degenerative discs & various aches & pains. My mum had underactive thyroid & my daughter has hashimoto's diagnosed as a child.
I have presented some evidence from PAS & info from this forum to the surgery & they even had a meeting about me (apparently) about a year ago where the Practice Manager apparently decided that under no circumstances should the b12 injections be reinstated!
I am so confused right now, I've even started to question my own sanity, I feel so low, I sometimes sit & cry - I lost my beloved dog 6 months ago & I am struggling to come to terms with it, he was my furry soulmate! I have no energy to talk to the gps again about this but I know I need a proper diagnosis. I hope with the reinstatement of the injections it wont do any damage with all the b12 running around my system not actually going anywhere. The gp put that doubt in my head. Without a proper diagnosis I just run around in circles.
I will take time to go through your checklists to make sure I havent missed anything. All my other blood tests are normal that they carried out at the surgery - I had a positive ANA but the gp said that doesnt mean anything as people can have a positive ANA without having autoimmune disease and also my WBC was low & from memory my ferritin was 42 which i think is on the low side. I was told I didnt have PA as well.
I am a member of PAS but thought they dealt with low b12 rather than high b12. I dont feel theres enough information out there about high b12 in language I understand!
Sometimes finding answers is exhausting. I'm sorry to read things are so difficult for you and you've lost a treasured companion.
I've given you a lot of information. If you're tired might be best to read it over a few days.
"I feel so low"
B12 deficiency can have a profound effect on mental health but sadly I'm not sure if B12 deficiency is on the radar of some mental health professionals.
I hit rock bottom several years ago when no-one was listening to me, I'd had really unpleasant experiences with more than one GP including being shouted at and pressure was put on me to leave one surgery. I was told the symptoms were because I was depressed and I kept telling them I was depressed because the symptoms stop me living the life I want to live. It wasn't that I didn't want to do anything; I desperately wanted to do things, get out, drive, ride a bike, go for walks, get a decent job but couldn't due to the physical symptoms. I was also diagnosed with hypochondria and psychosomatic symptoms.
I had always tried to be polite but was scared and felt very alone as didn't have access to the type of support I needed. It wasn't unusual for me to come out crying from an appointment; I was at the point of total collapse physically and mentally and no-one seemed prepared to help.
It wasn't just GPs, it was some of the specialists I saw, I was snapped at by one neurologist. I learnt a very hard life lesson at the time and that was that the only person who was going to help me was me...
I realised that if I didn't get treatment soon, I was headed for dementia and spinal damage.
I also learnt that GPs and specialists are not infallible.
Although I'd worked out that B12 deficiency was most likely, with typical symptoms over many years and multiple potential causes of B12 deficiency in my life, the picture was complicated by the fact that most of my B12 results were well within range 300 - 500 ng/L. I did have one below range result in past. I contacted PAS and other organisations/individuals about B12 deficiency, sought help on PAS forum, made several polite requests for B12 treatment by letter to GPs backed up with as much evidence as I could find in documents etc.
In the end I had to resort to treating myself for a while as requests to GP were refused despite all the evidence I provided. I had been ill for over 15 years, it took many weeks to see any improvements .
"so I'm not really sure what blood test they gave me!"
I'd suggest getting copies of all your blood test results so you can see what blood test was done and check if they tested you for PA (PA test in UK would be an Intrinsic Factor Antibody test IFA).
If the Macro b12 blood test was done at a hospital, you may need to contact hospital records office to ask for a copy of test results. You could also contact the personal assistants of Consultant Chemical Pathologist and Gastro-enterologist and ask for a copy of test results/letters sent to GP etc. Suggest you send any request as a letter.
"My mum had underactive thyroid & my daughter has hashimoto's"
I suggest putting any thyroid results you have on Thyroid UK forum on HU. It's a very active, supportive forum.
Hashimotos is an auto immune condition affecting thyroid function. Having a history of auto immune conditions in family may increase chances of developing other auto immune conditions. PA is an auto immune condition.
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. See links below.
Marz who posts on this forum knows about thyroid problems so may be worth searching for her posts.
"I am a member of PAS but thought they dealt with low b12 rather than high b12"
You had low b12 in the past. PAS can support anyone who has a PA diagnosis or suspects they have PA. An auto immune condition in the family may increase chances of developing PA . PAS can advise you on diagnostic process for PA.
PAS may be interested in hearing your story as it shows it is possible to have B12 deficiency symptoms despite high B12 levels.
"All my other blood tests are normal that they carried out at the surgery "
Have you seen all the results and got copies or were you just told they were all normal?
I lost trust in what I was told about results after being told everything was normal/no action more than once and then finding abnormal and borderline results on the copies. These days I don't trust what I am told about results unless I have a copy in my hands.
"I was told I didnt have PA as well."
It's possible you had an Intrinsic Factor Antibody (IFA) test in the past which came back negative. What your GP and specialists may not know is that it is possible to have PA even if IFA result is negative or normal range. See flowchart below.
Flowchart from BSH Cobalamin and Folate Guidelines
Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK
It's also possible that the GP did not do an IFA test and has just said you do not have PA so important to find out if IFA test done.
PAS (Pernicious Anaemia Society) can tell you more about diagnosis of PA and Antibody Negative PA.
"I've had a celiac screen & it was negative"
I suggest getting a copy of results of Coeliac screen and checking both these tests were done. UK GPs sometimes forget to order the Total IgA test.
1) tTG IgA checks for a particular antibody to gluten
2) Total IgA checks which patients have IgA deficiency.
Patients with IgA deficiency do not make the antibodies to gluten that tTG IgA test checks for even if they have Coeliac disease. Patients with IgA deficiency need different tests for Coeliac disease, see "NICE guidelines Coeliac disease" link in my other post for details of alternative Coeliac tests.
"I feel I've had iga tests"
Worth requesting test results for Total IgA test. If they haven't done Total IgA test in past then perhaps you could request they do it. If you turn out to be IgA deficient it may have affected some of your other tests for auto immune conditions.
Before you had blood taken for Coeliac tests, did your GP tell you to eat plenty of gluten in more than one meal per day for several weeks before the tests?
One reason for a negative result in tTG IgA test is that not enough gluten was eaten before test therefore not enough antibodies to gluten were circulating in the blood to register a positive result.
Many on forum have found benefit from a gluten free diet even if they do not have a Coeliac diagnosis. Some on Thyroid UK forum have benefitted too.
"I know I need a proper diagnosis"
Some people never get a definitive diagnosis. I'm not sure I ever will, at least my current GPs have accepted that my symptoms are typical of B12 deficiency, that I respond well to B12 jabs and that I deteriorate rapidly without them.
One benefit of a diagnosis is that some causes of B12 deficiency are potentially reversible eg
If it's due to diet then diet can be changed.
If it's due to Coeliac , a gluten free diet may allow gut to heal enough for B12 absorption in gut to improve.
Do you have any supportive friends or family members who could support you and perhaps accompany you to appointments? Even better if they have read about b12 and understand what you are going through.
B12 deficiency can lead to cytopenia, reduction in blood cells. It can happen with RBC red blood cells, WBC white blood cells and platelets. It might be one type of cell affected or two or three. Sometimes it happens to a specific type of WBC eg neutrophils.
Your second post are the articles I have found & printed off to mull over & try & make sense of! I mentioned to my rheumy maybe bone marrow edema is related to autoimmune & b12 deficiency & he said I was probably right - I also had sensorineural hearing loss before I started b12 injections & he thought that was probably autoimmune related. He then went on to say there are hundreds of autoimmune diseases & like looking for a needle in a haystack.
I actually get a copy of my bloods every time I have blood tests now & they are either within limits or borderline apart from the b12 & low WBC. I actually told you some incorrect info - my ANA was normal - it was my autoimmune profile that was positive - sorry about that I read it incorrectly.
I have been dairy & gluten free for nearly 2 years & it made a huge difference to my digestives. If I mistakenly eat anything with either in it I pay for it with pain & bloating & nausea!
Looking at other recent results my igG was 7.7 dsDNA negative (no idea what that is). The TSH level was 2.10 mIU/L (0.3 -5.0). There might be a potential problem with my liver in that the serum alanine aminootransferase level is always above range but I've had a liver scan & fibroscan which were normal but did report 3 large benign lesions. I think I may do as you suggest & have a private full thyroid panel done, that is a great idea. I will also ask gp if I have had iga test in the past.
So you see I have had lots of tests & I can see why the gps are wringing their hands but no reason for high b12 level. Like you say, I may never get a definitive answer.
I am preparing for my next visit to gp with new questions but I hope with injections reinstated my symptoms will start to decline & I'll feel more like my old self (I'll never be that without my dog though)! I have a feeling the gp will just say "you've got what you wanted now stop with the constant questions". Last visit he said that people these days get too hung up on numbers & should just get on with life! Easy to say if you feel great!
Kind regards & grateful thanks for all your help. Hopefully I can update with new info after I have seen gp at the end of Sepember!
Testing just the TSH is such a cheap trick. The TSH as you possibly know is a Pituitary hormone and tells the thyroid to produce T4 - ( a storage hormone ) - so it makes sense to know what the thyroid is producing. T4 must then convert into the ACTIVE thyroid hormone - T3 - needed in every cell of the body ... brain cells shout the loudest for T3 - followed by the gut/immune system - then the heart and so on ! So more detailed testing is required - TSH - FT4 - FT3 & Antibodies - TPO & Tg.
Happy to help when you have your results - with ranges 😊
Hello Marz - thanks you very much for your further support. I am thinking private tests for thyroid as I'm sure theres no hope for the gps help! It does seem strange that either side (mum/daughter) has thyroid issues but maybe they do skip generations! When I get them done I'm sure I will need further help analysing!
Click onto - About Testing - in the above link to find the companies that send out home testing kits. Used by 100's on the Thyroid UK Forum in order to have the correct tests done. 😊
Thanks Marz my daughter is a member of Thyroid UK, which has been extremely useful to her in the past. I will definitely do as you advise to make sure I get the correct tests done from a reputable company.
I have a high b12 also in test 1000 which is over the 800 range. I have a slew of symptoms it no one has helped me with any and can’t figuire out this. Hmm.. I will have to look in to it
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