Hi, for nearly 10 years I have been returning blood tests with low b12 levels, recently these have been 140 / 155 / 170 and 2 weeks ago 165. I continued to advise GP that there was an issue. In 2018 I had 6 loading doses but no follow up treatments. Throughout 2023 I reported tiredness and more concerningly occasional heart flutters, either missed heart beats or increased heartbeats when active. I have had Holter monitor test (24 hrs) and ECG and BNP blood test all of which have come back fine. I have always been a very active individual, from rugby to gym member and regular golfer and long walks with my dog every day. In Oct 23 just before a 3 week trip to Japan I had to report to local A&E as palpitations and heart rate was concerning. My usual resting heart rate is 52-56 bpm and I was near 90-100 bpm. Some of this may have been anxiety as I didnt want to travel if i had developed a heart condition. All checked out well apart from possible ectopic heartbeat and things seemed to settle down although A&E prescribed 2.5mg bisoprolol which I only now take occasionally when heart rate quickens. Back to B12. GP was made aware and has just put me on 50mcg cyanocobalamin however I am aware that this is the start for diet deficiency and I had hoped that I would move to stage 2 ie IM hydroxocobalamin. I have a blood test in 8 weeks but fear that taking even such a small dose will skew the real results. I still have some general tiredness, small numbing in thumb and index finger and occas balance / wooly head feelings and put this down to a B12 deficiency. My big worry is that the heart palps seem to come more frequently and often I feel phlegmy chested as well when i run up stairs or go on a long walk. I have gone from a confident outgoing active 60 year old fit male to one harbouring health fears and concerns often too anxious to go and play golf / walk dog etc. Being aware of B12 symptoms and dietary requirements my wife and I have excellent diet, focusing on b12 benefits and folate input.
I do read that heart palps are a common sign of B12 deficiency. Has anyone words of advice regards B12 and heart palps? Do these generally subside when treatment commences? Or should palps be considered outside of b12 symptoms. My GP believed that as there has been no "issue" over last 12 months then its not a heart based issue as everything else checks out fine.
My wife has noticed a change in me allround and I want to get back in front of the GP to get myself sorted. To add to the issue my GP practice is now a Teaching Practice and we only get to see student Dr's who spend more time typing into their PC and not looking at the patient.
Any supportive or similar stories?
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Sailing63
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If you have a healthy diet with red meat then it looks like you either have PA or an absorption problem. 50mcg of B12 is much too low an amount to help much but you are right in saying that it will raise your B12 levels which will probably convince your GP that everything is OK. It's a really tricky situation. From what you say about your GP I don't think he is going to be much help.
Your symptoms do sound like they are caused by low levels of B12 and that B12 will sort them out. I can't understand GP's being so reluctant to give patients B12. It is non toxic with no side effects ( except the occasional temporary outbreak of spots ). Yet they are happy to hand out antidepressants like sweeties.
Don't worry about your physical condition. I was in a terrible state when B12D. I couldn't even go upstairs without getting out of breath. But now I use my exercise bike for an hour every day and go for very long walks at least twice a week.
It all comes down to you. Do you think you will get a satisfactory result from your GP i.e. injections? If not then it's time to start thinking about helping yourself and obtaining your own B12. It doesn't always have to be injections, I have PA and find that oral b12 works for me. But I have to take a lot. At least 5000 mcg daily.
Hi Charks, just coming back on your supportive post. I have started B12 jabs (3 of 6 received so far) and prior to this managed to get the IFA blood test completed so jabs didnt skew the results. My IFA reading on NHS site is 5.0 and the "Normal Range" is 0.0 - 20.0. Dr states I am not anaemic, dont have PA and red blood cells count and size are fine. We are discussing treatment plan if its not PA, and so tablet and jabs may be way forward, but its a better picture than a few weeks ago. In regards to the faster heart rate, if this is B12D related, how long did it take for your improvement to be noticed? I did a 90 min walk today but felt a few "blips" although nothing worrying. My 3rd jab was today so didn't expect a lift from that. My first jab was Thursday eve and 2nd Sat am. Am I expecting too much to soon?
I used to get heart palps when I was anxious. Interestingly my blood sugar also went through the roof. Since B12 supplementation this doesn't happen. Although I did experience some heart palps in the early days of B12 supplementation. I think B12 acts as a stimulant on a body deprived of B12. Everything goes into overdrive. The effect subsides as the body rights itself.
As to the jabs. It's early days yet. Although I experienced quite a rapid response. I was in a terrible state before B12. I couldn't stand up and walk without help and had problems with my speech. I had to get my partner speak to the doctor as I couldn't get the words out. Within a week I could walk again and after a month my speech was normal.
There isn't 'one size fits all' with B12 supplementation. Everybody reacts in a different way to B12. For example a lot of people report 'reversing out' problems but I didn't have any.
Sorry to hear you're having such a time,its appaling your Dr is not acting on your results & symptoms!Yes a diet high in nutrients is always best,but you can eat all the b12 you like, if its not being absorbed or getting into cells, then you need treatment.
My diet was checked by NHS & told I was eating 570% b12 a day(not quite sure how on a dairy free diet, but there you go!) But my serum b12 still just 260. Not low enough to be considered a prob by NHS Dr even though I'd been ill for many yrs.
It was bit of a battle, in end I paid for an Active b12 test which was barely in range, & referred for MMA test which was very high and told I had a Functional deficiency,technically enough b12 in blood,but not getting into cells. So goes to show even at a blood level deemed adequate by Dr, I was severely deficient &feeling very unwell. So it's very possible results as low as yours are making you unwell.
Yes, I too noticed more episodes of faster heartbeat, pounding on doing things I usually found easy, awful breathlessness & a feeling of gasping forvair at times,etc which alone causes anxiety, but so does low b12. I can remember many a time feeling like wanting to go & hide in a cupboard as the smallest of tasks seemed too anxiety inducing! All of which eased with regular b12 injections after time,but you must feel satisfied you've had adequate heart checks, so push on to get what you deserve.
Those symptoms you describe numbness,etc are neurological, so your Dr should be listening & treating you better-a loading dose, but ideally every other day until neurological symptoms disappear though most folk struggle to get more than 6, then according to new NICE guidelines,should be at least every 2mnths,ideally more!
I'd suggest asking for your blood results so far & putting them on here,they may give other clues- jave you the NHS App? Have you had an Active b12 test, iron,ferritin,vit d, full blood count, intrinsic factor,thyroid,etc? Low ferritin/iron can also cause palpitations,pounding heart,anxiety too, so could be a contributing factor alongside b12.I know easier said than done,but try to remember until you can get the treatment you need, you are no doubt feeling anxious due to concrete symptoms.
I've found we are in very safe hands on this site,so many helpful knowledgeable people who will support you...take care...
No worries Nackapan, we are a buy one,get one free kinda combo, between us I'm very muddled after another loading dose,so am sure you've said it more clearly! 😀
Yep, years serum b12 and range shows as 187 - 883 and I scored 165. In recent years its was 144 and 157 so a history of low reads. Serum folate range 3.3 thru 20.5 and I scored 5. The b12 society advised that many hospital ranges run from 5 as a starting point and so may be an issue with a score of 5. One thing I am so surprised about is with b12 and folate deficiencies being so widespread why are GP's generally so poor at handling the issue and why aren't test ranges standardised. Originally I was advised that b12 above 300 was fine, below 300 was LOW and below 200 deficient. My GP claims at 165 I am borderline but my response has been look at all the accompanying classic b12d symptoms and not simply the 165 score. Factor in that for 6 b12 tests my highest score was 172 and issue have been ongoing for years. I am not sure what it will take for my GP to do one simple thing, that being his job correctly! But it's something I plan to ask at next appt and I will be armed by much of the excellent advise I have received in this thread. Thanks again one and all
I had had heart palpitations, and daughter did too but her cause was low ferritin levels Another daughter had many many tests .
Her autonomic system was affected by low ferritin, low folate and severe low B12.
Very scary thumping heart ect mimicking a panic attack .
I was told a panic attack after a and e decided on a brain CT .
Thankfully clear .
It was not a panic attack!
Was your ferritin and iron levels okay ?
Before taking high oral b12 supplements ask fof an IFAB test.
It shows up about 50% of those with PA .
As we age wd produce less stomach acid so can absorb fewer nutrients however good ouf food is.
I'm assuming its a serum B12 test you had. Useful to have measurement used and 'in range ' in brackets on the right of your result .
Look at the new NICE guidelines.
MA tests explained if 'in range ' but systematic.
Active B12 tests also .
Most of us over 50 need vitamin and mineral supplements.
I also thought mg good diet was enough.
However if you cant absorb enough from food it'd unlikely you will absorb from oral or sublingual b12 unless yoo take mega doses as there is evidence of passive absorbtion.
Also a very expensive way.
Blood levels are raised but you've no idea of it reaches cell level.
I would push for more tests to rule our anything else .
The Pernicious Anaemia Society has good resources.
Also other sites like Tracey Witty .
10 years s is a long time.
When you had loading doses why were you not put on 2-3 monthly b12 injections.
Ask.
Look at your notes .
List your symptoms.
Don't try snd push through until you know what's going on.
I tried that as told depression/ hormonal changes.
I collapsed and was seriously ill.
Only then was B12 tested along with every othef blood test thd G.p could thik of.
Go back time snd time again see different doctors.
Students may be more open minded and work with you .
State 5 worst symptoms.
Refer back to medical notes when you had loading doses.
Many things cause heart palpitations.
Process of elimination.
B12
Folate
Ferritin
Full iron count
Vit D
Should be added to full bloods.
I was on no medications . Was active.
Also a very good diet .
Nothing ekse found on my bloods apart from
Very low B12
Very low vit D
Low ferritin .
To date nothing else found to treat .
B12 tablets and sublinguals work well if dietary or absorbtion has slowed .
Did nothing for me as ? not 'caught in time or simply couldn't absorb enough '
Too deplete of b12 .
I need regular b12 injections that i know go straight into my blood vessels like the majority on here .
If B12 deficiency is the cause of your symptoms you need to act as soon as possible .
Loads of posts to read through to make the next move .
Yes, I had heart palpitations as part of a whole range of B12 symptoms. But heart fine, I was told. Then I was diagnosed with severe B12D and began NHS treatment protocol. Not enough. After a year I had to SI EOD as indicated on this site. Now symptoms lifted including heart palpitations due to frequent B12 replacement regime.
Your bloods demonstrate b12 deficiency (Google NICE guidlines), more importantly you have symptoms of b12 deficiency and need to be correctly treated with b12 shots as there is a risk of long term and irreversible deficiency symptoms setting in.
Cutting to the chase either you can persuade the GP to do their job, go private or self administer. The thing that is important is that the deficiency is corrected.
Yes I also had terrible heart palpitations and I was not myself (mentally depressed and full of anxiety). Very unwell. I jave not had any palpitations since starting injections! So they definitely work.
There is a private doc in Cambridge that is helpful to get a diagnosis and will communicate this with your surgery. PM if you want details.
I found it an essential necessity to educate myself concerning B12, its effect on the body and its lack, so I could have a more knowledgeable conversation with my doctor and counter with questions where I disagree. I hope it showed I couldn’t be fobbed off. I keep it very polite and respectful, we are moving forward (he knew very little about B12). A helpful article found I was pointed to was in the British Medical Journal (BMJ) on B12 Theraputics, well worth a read and inviting your doctor to take a look, or print it off for him.
I gifted a book by Dr Chandy (a hero to many B12 sufferers) called B12 Deficiency in Clinical Practice (£6 on Amazon), I have yet to have another appointment with him since dropping it into the surgery, I am interested to see if he even opened it. In my own way I try to do a little to educate medics who cross my path. If you have not seen the new NICE guidelines the link is below.
Thanks to everyone for their positive messages. I have been asked regards blood test results. I engaged with The B12 Society (Heather - very informed, supportive and reassuring) and shared my full test results with her to view. It seems that even with all the amount of info regards B12 symptoms and issues being hard to sometimes pin down, the standards for interpreting results are not universal. Heather immediately saw that my iron was low at 5.0 when the scale is 3.1-20.5 and some hospitals see 5 as the minimum! I am now more aware of Active B12 and the need to see homocysteine results for a clearer picture. However, the message from all is clear, take charge of my own situation and with being informed, engage positively. Good point that Student Dr may engage well as they are keen to perform. Step one is to improve the B12 and iron levels and see if they gives the progress I need. Once on the right track I am sure my confidence will return and will be strolling my fabulous golf course twice a week.... so B12 scores UP and handicap DOWN! Initially will try to avoid the self inject route thats stage 5 in the plan and I am currently at stage 2 so will move through the stages positively until treatment is successful. Thanks again all and I wish you all good health, and as a sailor, calm sea's and fresh winds!
Please try to get more testing before taking this small supplement and skewing your results. The palpitations, anxiety, neuropathy and fatigue are very likely to be down to low B12 (and probably low folate as it cannot metabolise fully without enough B12 - which means it can build up in blood and serum may actually look high). Just raising serum level of B12 with oral supplements may not be enough, as there are several processes that need to be working well for the B12 to get from blood to cell and do its job. Injections work, oral may work but may not - so best to keep a good list of all possible symptoms and a diary. Assuming that you got benefit or at least signs of change from the 6 loading doses in 2018, then I'd be wanting to know what was recorded then, why they didn't give you proper treatment then and why they are offering something wholly inappropriate now. Best wishes
I also have the racing heart and shortness of breath on occasion, which I now recognise as a warning that I need to increase my injection frequency. Before I knew I had PA I spent several hours in the emergency department having my heart fully investigated- all normal. Diagnosis: "stress". Well, my body sure was stressed! 4 years on, it features in my diary from time to time, and responds well to extra B12.
In addition to suggestions from our other forum members I'll add a couple things...
1. You should get a proper diagnosis of "autoimmune Gastritis (AIG)" aka Pernicious Anemia. That's blood testing for PCAB, IFAB, and serum Gastrin. If you are positive for AIG then as I say "It Ain't Just B12!" AIG is slowly progressive and the earlier you know you have this the better to manage. AIG symptoms, PA due to malabsorption of B12, gastric issues due to low or no gastric acid, and Iron Deficiency.
2. Iron Deficiency... Although there can be many causes of heart palpitations, iron deficiency is one of them. It's important to figure this out as iron deficiency for prolonged periods can damage your heart. If you are positive for AIG then Ferritin is not a valid marker by itself for iron levels. Those with chronic inflammation due to AIG should keep Ferritin above 100 ng/mL versus the low normal of 30 (normal range for the lab I use is 30 to 400 ng/mL). You should have a full TIBC iron panel done, another blood test. Iron Deficiency can also occur without the telltale anemia the doctors look for. Doctors will typically look at low Ferritin then if RBC and HBC look normal they'll discount iron deficiency. Iron Deficiency with normal RBC and HBC (e.g. no anemia) is called Iron Deficiency Without Anemia (IDWA). See my post on IDWA there are links and references there that you can take to you doctor if need be.
Some people with PA can get by with supplementary B12. But the dosage should be MUCH higher. Try 1000mcg or higher sublingual B12. You would be better off however starting with B12 injections, EOD to start until your symptoms dissipate. If you can't get your doctor to give you regular injections, there is lots of info on this forum on how you can do it yourself.
So quick update. Managed to get a GP appt today and discussed most of the above. This was my 3rd "new" GP in 3 appointments. He agreed that 50mcg would only serve to skew results and ran through returned blood results in more detail. He ruled out iron deficiency and mis-shapen red blood cells and folate issues based on scores 3 weeks ago. Focus is now on the ongoing B12D and he has agreed loading doses to commence and see how things progress thereafter. Thought I was moving forward until I returned to Reception who advised no blood tests for Intrinsic Factor issue for 6 weeks (unless I go to main hospital and wait in lengthy queue) and Practice Nurse has no available appointments to start the EOD dosage. I insisted that an appt to be given as I am on 2 weeks holiday at end May and for continuity reasons I had to complete the initial 6 loading doses before then. Apparently I will receive a call tomorrow to advise / discuss. So 3 steps forward but possibly 2 steps back!!
Great post SB and again thanks. I have just been advised by my GP practise that one nurse doesnt work Wed/Fri and the other nurse is away form work for another 4 weeks. Asking then how they deliver EOD services I was advised " I dont know" and will receive a call back "soon". Crazy that GP prescribes and I have picked up the hydro ampules but they cannot now deliver. I also cannot get a IFLA blood test at the practise for at least 6 weeks and will have to go to local hospital walk in centre to progress this. Read your informative thread "Help..." and The B12 Society have pointed me in the direction of NICE guidelines. Thanks again for the support as it does make a difference. I can see my next research will focus on which Self Administering process is best IM or Subcutaneous as my GP cannot deliver an effective or acceptable service.
Maybe you could point out that if treatment is delayed or inadequate it increases the risk of developing permanent neurological damage. In severe cases, spinal cord may be affected.
Perhaps you could show them this article from PAS.
Just back from hospital walk in after blood test. Seems was full B12D request on top of IFA test. Told the phlebotomist the above issues who was unhappy that practice actions throws workload onto an already overburdened service. She also advised me to write to practice manager. Hopefully results will allow clarity and progress although still no returned call re when EOD can be delivered. Seems I have the bit between my teeth in getting progress.
Dear Sailing63, I too had low levels about like yours were/are. I knew something was dire wrong when I broke down and started crying vehemently and could not stop. I don't mean I cried some and then later that day started again. I mean I started crying and could not control it, could not stop. Wife thought I might be having a stroke and called 911(we're in the U.S.), and they came out took my blood pressure and looked me over and told her it was all in my head. They told her I need a shrink. I started researching on what my problem was. I ordered a book titled "Could It Be B12" by Sally Pacholok and Jeffrey Stuart. That book helped me tremendously. They also made a movie about Sally's story. It is really eye opening and let's you know just how uneducated doctors are. That's right, after you read my response to you here, you'll probably know more about B12 than your GP does. That's not a joke either. There's also a good book about B12 issues by Martyn Hooper as well, he started this forum. Here's my suggestion. 1 Tell your GP you want an "IF test" (intrinsic factor test). If he refuses to order one for you, find another Dr. who will. This test will let you know if you have pernicious anemia, also sometimes called megaloblastic anemia or vitamin B12 deficiency anemia (just different names for PA). Your levels are way too low. Again, way "too" low. GP's and most other medical doctors and healthcare workers know a scant little bit about B12 deficiency or how to treat it. When I first realized that my B12 levels were low, it was hard finding anyone who was willing to give me a shot. My GP told me to take some folate pills and Vitamin B12 tablets and I will be fine in no time. I wasn't. Most people will think you've lost your marbles, and they would be somewhat correct. Many people are diagnosed as having Alzheimer's or other mental conditions when in fact it's just B12 deficiency. Finally, after I felt miserable, weak, memory issues, lethargic, and was having all kinds of symptoms, (psychological ones as well), I found a place where I could buy Methylcobalamin (a form of B12). I took 1 injection per day, for 30 straight days straight and low and behold I began to notice a difference. Then I downgraded to 3 shots per week with an occasional 4th shot on some weekends. Now I currently take 1 shot M, W & F. How much to take and when is a trial and error type venture. If you have pernicious anemia you really do need to take that IF Test. Other people on this forum know a lot of what I am telling you plus even more. Don't fear listening to them as well. Hope at least some of this helps. MJatip.
Thanks for the post MJatip and glad you found your own pathway to sorting the curse of B12D. Here the good news that after some persistency I received the IFA blood test on Thursday and armed with the new UK NICE clinical guidelines for B12 shots also received my 1st B12 injection, followed up this am with my 2nd and have a program booked for all 6 next week. My GP did spend much more time looking more closely at all other recent blood test results so I am happier that at last he knows that I am not going away and am relatively well informed regards B12D. So hoping that by the end of the shots things start returning to normal and depending on IFA results a planned treatment pathway will be agreed, either tablet if not PA or more shots if it is. The main learning from my engagement on this forum is that there is a wealth of knowledge held by people in the same positions who can help and it is ok to take your own health plan seriously and have an informed discussion with your GP. They do say that "information is king". Onward and upward I hope.
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I'm very muddled after another loading dose,so am sure you've said it more clearly! 😀 
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