Just needed to share the latest. My GP still categorically states I DO NOT have PA. He can't explain how he knows that, he accepts all the symptoms match but he will not budge. I have given him the Guide for Medical Practitioners, he said that it was irrelevant because I do not have PA. I know I will have to change GPs, I know that and I will. The latest thing is he had me wear a 24 hour ECG. I had the results back yesterday and he said I have Ventricular Ectopics and he wants to put me on betablockers. I am a bit worried about that, not sure whether to take them, worried about side effects etc. Any advice would be welcome. I know B12 deficiency can cause cardiac arrhythmia - again the GP will not entertain that, because I had the loading dose and my b12 was high when he repeated the blood test.
Aside from that, I had a b12 injection at the beginning of this month. Symptoms are better, brain fog is definitely not as evident, not experiencing the crushing fatigue I have had for months. The main problem is low mood, and the irregular heart beat. I am really low, don't want to do anything or see anyone. I go to work, wear my mask, get through it, but after that I just want to hide away. Is this part of the b12 deficiency, or am I just mentally ill, as the GP states? He said he cannot explain why the loading dose had such a great effect on me, made me feel like me again, because if it was b12 deficiency causing it the loading dose would have lasted three months, as it does in a typical patient. I said we are not all the same, he ignored me. I know I need to change GPs, there is nothing else I can do. It's just a massive step when you feel so low and worthless and that nobody is listening. It is hard to talk when people just rubbish what you say. Would just appreciate some advice from people who know what they are talking about. Particularly in relation to the betablockers.
Thanks
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Dee215
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Hi D215 , others will answer your PA problem soon as I'm not experienced enough , but I think your GP needs to refer you to a cardiologist before he precscribed you beta blockers , I take them but was prescribed by cardio at the hospital after many tests . Good luck with your new GP asap , . I think you just walk in to new gP surgery and ask to register , no need to explain to present GP , thinking of doing the same as my OH has PA and he's undertreated . I'll go now to make way for the others who are brilliant ps I inject him weekly with b12 and he is improving slowly , I never thought I could do that but amazing what you can do when you see a loved one suffering needlessly .
Changing GP is not as easy as you think it is. I was categorically told to register at a particular surgery around where I live now, NO CHOICE, even now that I want to change because of similar experiences described above. So I will try to see different GP within practice. B12 won't be mentioned anymore as I deal with that myself from now on. Will inform them about having them self administered or done privately. Can't be bothered with the negativity, having to explain myself to someone obviously not interested.
I am and never have been a person regularly visiting a GP Surgery and with past experiences will not do so in the future very often either. Flu jab once a year will suffice for now.
Private blood tests twice a year and full body scans every 2-3 years in Germany. Maintaining my health is my priority above all else, I know how it was and how it can be.
I am fortunate that I (again ) together with the help of my dear hubby , are able to provide for our needs and hope to keep it that way a bit longer or else 😏.
I totally agree with you. I can't be bothered to keep explaining it to someone who is obviously not interested so I am going to deal with it myself. Going to try sublinguals, then patches if they don't work, then self injection. I am not going to let him make me feel small and stupid any more. I know my own body, he doesn't. And I am not going there with the beta blockers either until I have tried the sublinguals and the patches. I am sure the arrhythmia is caused by B12 deficiency.
Your Doctor is able to see you don't have the antibodies by looking at you? He is able to know what is wrong just by glancing over your file? No, of course not.
With the heart issue, insist on being referred to cardiology, if he's not competent enough to deal with your symptoms of B12 deficiency, he's definitely not competent to mess with your heart.
Did the doc fit you with the ECG or was it the hospital? If it was the latter, they may have reported on the result and suggested you be put on betablockers, you are best off finding out where the suggestion came from, him or the hospital after reporting on the test to your doctor. If the latter, I would suggest you go on them as suggested.
When you say "the loading dose" did you just have the one, or the recommended 6?
It IS different dependant on each patient. I had 7 injections, one every 3rd day and I'm a week since the last one and I have crashed big time.
Your mental symptoms very well could be B12 related, don't let him refer you to psychiatry or psychology, not before you've proved that the injection makes those symptoms better.
Even if you don't have PA, there are other reasons for B12 deficiency.
The practice nurse fitted the ECG, the GP showed me the tracing on the screen, all the blips are supposed to go up apparently but a lot of mine go down as well. Nobody else has seen it only the GP and myself. He said it is not dangerous and if I left it without taking the betablockers or having any treatment it wouldn't cause me any harm. It doesn't hurt, or anything like that, it just feels uncomfortable and a bit scary. Can the b12 deficiency cause that sort of thing?
I had the loading dose at the beginning of August, 6 injections over 12 days. I felt fantastic after them, but the symptoms started for return after about a fortnight. Then I had another single injection at the beginning of this month, it's supposed to last three months apparently. Feel better than I did, the brain fog has definitely lifted and the crushing fatigue is less crushing. Looking at buying subliminal b12 but it's a confusing market, don't know which to go for.
Ugh, that's horrible - {{hugs}} - as Annnon58 says others will have more info, I'm new here too and anxious about what my doc's going to do next week when I've booked up to go back and press for the proper loading. It's so hard when you don't have the energy either and you know a dose of B12 sorts it out!
Put yourself first, go find new doctor, and if that doesn't work, try another. It's your life, not theirs, and you've a right to the right treatment, just a shame we seem to have to push so hard for it sometimes.
nobody has actually been able to state where the 3 months used in the UK with hydroxocobalamin comes from so does sound as if your GP really doesn't know much when it comes to B12 deficiency - he's blindly following guidance without really looking into the condition - but that tends to be par for the course when you are trying to juggle hundreds of conditions as a generalist.
The BCSH guidelines actually cover all absorption related B12 deficiencies not just PA, which is one potential absorption problem - unfortunately they are probably looking at the NICE guidelines which are a long way from being as clear as they could be in relation to absorption problems and it is very easy to interpret the focus on PA as meaning that treatment only relates to cases where PA is the cause of the absorption problem. Problems with false negatives on IFA test are also far from clear in the NICE guideance.
Your GP can access the BCSH guidelines through the BNF but does rather sound as if they really aren't interested.
B12 deficiency can lead to cardio-vascular problems. As far as I am aware, the mechanism involved seems to be related to the role that B12 plays in recycling homocysteine.
This article talks about treatment of venticular ectropics - and it does appear that some types - VEBs relating to exercise - do appear to be benign though there does seem to be some question mark over this and some sub-types where this doesn't apply
suggest you try for a cardio referral as per others above.
sublinguals (as opposed to subliminal - loved that typo ) may or may not help - its a very individual thing. Popular brands are Jarrow and Solgar. I'd recommend trying to find something that wasn't methyl, or mixing methyl and adenosyl. I have some adenosyl sublinguals that I use (along with methyl and hydroxo nasal sprays) that I source from a company called detox-people. All you can really do is give one a try ... and don't feel constrained to use them per the recommendations on the pack. It might be better to start using them immediately after a maintenance shot as what you are trying to do is to keep your levels really high so starting from a point where your levels are going to be very high anyway, rather than a point where it has probably dipped a bit to low for you - which sounds like it is a couple of weeks after an injection - would probably have more effect than trying to rely upon them to not only maintain but also increase your levels to the point you need - which would be the case if you start taking them after the symptoms recur.
So sorry to hear of all these problems with your GP but 'join the club' So many people have the same/similar issues with their GP being a pratt (for want of a better word), my GP being the same.
I'm not, at the moment, going to change @GPs, mainly because so many are just the same. At least my current GP knows I'll disagree with him etc and he's generally pretty good re the 'run of the Mill' GP work
So, I've been self-injecting, feeling so much better and many symptoms have gone/improved. In spite of that, and blood results that paint a good picture (IMO) my GP still says I'm not deficient etc.
They are not taught, during med training, re the value and importance of vitamins, don't seem to have time to research (so they say) so there you have it.
Whether you have PA or B12 deficiency, although the cause is useful to know, the treatment would be the same, ie injections, unless you are veggie/vegan in which case some suppliments may be sufficient.
Like you, I would suspect your current symptoms are also due to lack of B12 so you'll have to choose your route - new GP (in the hope they're more sympathetic), insist on referal to cardiologist or self-treat (not expensive but that can be relative )
Maybe just be a devil and go for self-injecting Unfortunately, this would mean you don't get a formal diagnosis but many of us are in that boat.
At least, this way, you're in control and know you'll get the right dose, at the right time. If your GP does happen to crawl off his pedestal, then you'll have his option too. Don't even have to tell him ...
Sound awful, similar to me. My doctor tried to make me say I had anxiety and depression. . Tried to trick me onto saying it. I had an Iregular heart beat for about a month and was awful...
A pint of coconut water a day actually helped relive this...don't know if it will help you? Its because I was taking folic / b12 sublingual and depleted my potassium. May not be the same for you but couldn't hurtell to try. Potassium had a lot to do with heaRte rate. Im not a doctor but i would recommend either b12 sublingual or .... self inject. I self inject and it's saved my life. Sublingual doesn't really help me (but depends on the person) but injections do help me. It's not as scary as it sounds most countries out of the UK sell them over the counter anyway. My mum or brother usually inject me but I have started myself also and I have to say it's not that bad.my depression and heart problems have eased alot... without injections I too go to work with a "mask" and struggle to see a future...but with injections I feel myself again. Especially seeing as you felt yourself after the loading doeses that is almost proof in its self that you need it? Again not a doctor but that's from my experience ... my doctor also says I don't have PA because I am not "anemic" ...which doesn't matter anyway so I won't rely on my GP any more as I went to him with my symptoms 5 years ago and he could have treated then if he had the sense but didn't. Anyway hope this helps and good luck x
Thank you so much for that. You have given me some hope, you sound exactly like me. I am going to try sublingual B12 and see how it goes. I am already taking iron and folic acid. Self injection is not something I am look looking forward to doing but I am prepared to try anything to feel better.
" I go to work, wear my mask, get through it, but after that I just want to hide away. Is this part of the b12 deficiency, or am I just mentally ill, as the GP states?"
B12 deficiency can have a huge impact on mental health.
"he cannot explain why the loading dose had such a great effect on me, "
The BSH Cobalamin and Folate Guidelines make it clear that someone who is symptomatic for b12 deficiency and who responds to B12 treatment eg symptoms improve, can be diagnosed with PA or Antibody Negative PA provided other causes of B12 deficiency have been excluded. If you respond to B12 and dietary B12 deficiency and other possible causes of B12 deficiency from absorption problems such as Coeliac disease have been ruled out then Flowchart below seems to indicate PA or Antibody negative PA can be diagnosed.
Thanks for that, I have felt so low since seeing the GP again, I always get hope from this forum. If I have all the symptoms, and the b12 injections improve them, then it stands to reason that the cause is b12 deficiency doesn't it? I don't understand where the GP is coming from at all, he was just so adamant, so absolutely determined to tell me I was wrong. And when you feel so low it's easy to believe someone who is supposed to know what they are talking about, and just feel stupid for getting it wrong, isn't it? That's how I felt anyway. After having read so many posts on here again I am sure my difficulties are caused by b12 deficiency in some form or another. Whether it is PA or not I don't know. But it is something. Not psychological as the GP says. I have ordered some sublingual b12, hoping they will help.
What you say all makes complete sense. Your Dr's behaviour is unbelievable but all too common. To understand how you feel about such shabby treatment you could Google "Recovering from Gaslighting".
I too was told I do not have PA although tests did show B12 deficiency. I had all the symptoms you describe, including ventricular ectopic heart beats and other arrhythmias, These have all stopped since I started self injecting and taking the vital supporting supplements to make the extra B12 work properly.
For more information you could look up my profile by double clicking on my name and see my post "My Experiences".
If B12 deficiency is the problem then getting enough (and that may mean a lot) will be the only thing that will make you better and beta blockers will not provide a long term cure.
Good luck with getting the right treatment for you.
In all three London practices I've attended over the past 30 years, it's nearly impossible to see the same GP twice, especially if you make an appointment the same day on a non-routine basis (i.e., don't book a month in advance). Maybe they all don't work that way, but I wouldn't waste another second with this GP. See another. And a third and a fourth if you need to. It 100% worked for me. (Also, I hate to appear sexist, but I've found female doctors generally listen better.)
I spent years at a practice, where on several occasions I was treated unkindly. I thought I was the problem until I changed GPs and realised it wasn't me , it was my previous GPs who had the problem.
I had multiple typical symptoms of B12 deficiency including neurological symptoms. Looking back if I had stayed with them I believe I would now be showing signs of dementia and spinal damage.
I believe I had mild PTSD symptoms for years afterwards triggered by the unkindness and unwillingness to listen and look at evidence I provided about b12 deficiency.
I was scared because my body and brain were not working properly and it seemed everyone including GPs and specialists was trying to say the symptoms were all down to depression and I kept trying to tell them I was depressed because the symptoms were stopping me living the life I wanted to. I was told by one medic that I had hypochondria, by another that my symptoms were psychosomatic, by another that it was ME/CFS ( which in the area I live seems to be viewed as a mental illness) and these labels followed me every time I saw another specialist in the same NHS area.
The one person who showed some understanding was a neurologist I saw in another part of the UK.
My view is it's not a good idea to stay at a surgery where you are not treated with respect and kindness or you are unable to get treatment you need.
Have you considered
1) Writing a letter to GPs including symptoms , extracts from relevant B12 documents, blood test results etc
GPs may pay more attention to a letter as my understanding is that letters are filed with a person's medical notes.
Link about writing letters to GP about b12 deficiency
I really appreciate you taking the time to help me. I too have been treated unkindly by the doctors in the surgery, and they have no respect for me. I know it is wrong that they treat me with no respect, but my worry about changing is that I will have to explain it all again to new GPs and they will just be the same. I am hoping that I can self treat with either the sublinguals or maybe patches, and I won't need to go to the surgery any more. I have been on antidepressants for years and the GP won't even offer me any more help in that department, he says I have tried talking therapies and they haven't worked. No, actually, they stopped me having counselling because I had had my quota, the NHS wouldn't pay for any more. I had CBT but the therapist said my mood was too low and he couldn't help me so he discharged me after two sessions.
I am a member of PAS and have contacted them but my experience was they can only help if you are already diagnosed.
I have written letters to the GP, and enclosed the information I have been offered on previous posts, the guidance for medical practitioners and the information which states loading doses should continue until there is no further improvement. The GP will not budge, he just states categorically "You do not have Pernicious Anaemia". He says the symptoms are all psychological and there is nothing he can do, he can't wave a magic wand. Another example of his lack of respect for me. He wasn't happy when I refused his offer of betablockers. I asked him, if the ventricular ectopics are not dangerous do I have to take any medication for them, or can I just live with it. He said you can if you want, so I said I will do that then.
I will definitely try HDA, I haven't heard of them before.
The equating of B 12 deficiency and Pernicious anaemia a i.e.if you have B12
deficiency then you must have pernicious anaemia and variations of this association in a cause and effect way , not helped by the fact that the tests for PA are unreliable, is, at least at my surgery, reinforced by the fact that when was diagnosed the doc tor commented that he could not enter B12 deficiency on its own but was compelled by the software to enter B12 deficiency/PA (Dont know why typeface keeps changing - no significance )
I can't guarantee that HDA pct can help but it might be worth a try. Lack of understanding of B12 deficiency is quite widespread in my experience in both private and NHS healthcare.
"but my worry about changing is that I will have to explain it all again to new GPs and they will just be the same"
There are a lot of things to weigh up in deciding to change surgeries.
I thought about what the outcome would be if I stayed where I was and decided the risk of dementia type symptoms and spinal damage was enough to make me move. The next surgery was a bit better but I am now at a GP surgery where I am treated kindly.
At least you are getting some treatment eg 6 loading jabs then injections every 3 months although this is not the recommended treatment for those with neuro symptoms.
It can be a long slow process of building up evidence before some people get a diagnosis and some people never know what has caused their B12 deficiency.
Do you have any blood relatives with PA or other auto-immune diseases? Having auto-immune diseases in family is a risk factor for developing one.
Have you seen any of the following?
A cardiologist...in view of your heart related symptoms , I'm surprised you have not seen a cardiologist.
A neurologist....might know that neurological symptoms due to B12 deficiency need more intensive treatment than once every 3 months. There are many causes of neuro symptoms so neuro appt can hopefully rule out other causes besides B12 deficiency.
A haematologist.....B12 deficient patients with neuro symptoms are supposed to see a haematologist. See BNF links.
A podiatrist....neuropathic symptoms in feet can occur in B12 deficiency. UK podiatrists with correct training are allowed to prescribe B12 injections.
Are they planning to give you B12 treatment for life? Sadly sometimes B12 injections are stopped.
See blog post from Aug 31st, 2017 from B12 deficiency info website about injections being stopped and what to do about it.
Do you get copies of blood test results and have you ever looked at your medical records? It could be interesting to see what has been written in the past especially if the GP/patient relationship is strained. Costs £50 in UK to get complete set of paper records.
A UK patient has the right to have factual inaccuracies corrected in their records. Patients do not have the right to have medical opinions changed but they can have a note inserted into their records which gives their view.
I don't know about other family members, my mum and sister both have depression I know that. The gp gave me the loading dose but won't give me any more B12 because I have high levels now. Even if I self treat am I still at risk of spinal problems and dementia?
The BSH Cobalamin and Folate Guidelines mention that testing B12 levels after treatment has started is irrelevant. Link to BSH Guidelines in my longer post above.
I think there is something in fbirder 's summary of B12 documents about testing B12 levels after treatment is started. Link to his summary in third pinned post on this forum.
Link to article (in English) on Dutch B12 website about high levels of B12.
I am despondent. I read it over and over again on here too, why do the GPs not take us seriously? Do they not know how poorly this makes us feel? Or do they really just not care? I finished my iron tablets yesterday. The GP originally said I was to take three a day of Ferrous Fumarate, but it gave me severe stomach pains so he took me off that and put me on Ferrous Gluconate. He said to try one a day at first, and if I tolerated it he would increase the dose, because one a day would not make much impact on my low iron levels. I have finished the first months worth at one a day and have been fine. I telephoned the surgery yesterday morning to explain that I had tolerated them well and to ask for a) more and b) an increased dose as recommended. The receptionist told me the tablets would be ready to collect at the pharmacy today. I then had a text message this afternoon asking me to contact the surgery. I did so, to be told I was not allowed to have more iron tablets until I have had another blood test. They offered me an appointment on 1st November. So I have to go without any treatment until then. Am I being paranoid or is the GP playing power games? I couldn't get a blood test for love nor money when I needed one, before the private blood test I had which showed the original b12 deficiency. Now I can't have the treatment the GP already knows I need because my iron levels are always low, until I have had my third blood test in six weeks.
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) may or may not help - its a very individual thing. Popular brands are Jarrow and Solgar. I'd recommend trying to find something that wasn't methyl, or mixing methyl and adenosyl. I have some adenosyl sublinguals that I use (along with methyl and hydroxo nasal sprays) that I source from a company called detox-people. All you can really do is give one a try ... and don't feel constrained to use them per the recommendations on the pack. It might be better to start using them immediately after a maintenance shot as what you are trying to do is to keep your levels really high so starting from a point where your levels are going to be very high anyway, rather than a point where it has probably dipped a bit to low for you - which sounds like it is a couple of weeks after an injection - would probably have more effect than trying to rely upon them to not only maintain but also increase your levels to the point you need - which would be the case if you start taking them after the symptoms recur.
So many people have the same/similar issues with their GP being a pratt (for want of a better word), my GP being the same.
Any connection with B12 deficiency and Bladder issues?
Beyond frustrated
