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[BleekerStreet]

My GP has offered to refer me to a PA specialist, although there is some debate between the GPs at my surgery as to whether I have PA. Two I have spoken to say I just have low B12, the other says I have PA.

Firstly, I did not think there were PA specialists on the NHS. Am I wrong?

Secondly, assuming that this appointment doesn't come about (the GP seemed dubious) can anybody recommend a good private consultant who might talk through my concerns and questions rather than immediately state I need to self inject, without even seeing me or talking to me?

My three main concerns are: 1) If my palpitations (irregular but unpleasant when they happen) are related to PA, are they less dangerous than if they were connected to my heart condition?

2) My memory is terrible. I am a freelance writer, and am really struggling to find words. Will my memory improve with more B12, or is this a condition which will just stay as it is now. I passed the memory clinic test, but that is very different to my memory problem.

3) Similarly, will the horrible brain fog and anxiety I have ease, or is that now a permanent fixture?

I am assuming from what I read that the physical symptoms will ease with B12.

I had my first set of six jabs over two weeks, and was better for about three days, but then experienced the worst palpitations I have ever had. Since then I have been no different to before the jabs. Had my top up yesterday. No different today. I feel like I am really whinging, but nobody seems to know, and the three GPs who have contacted me all say different things.

Frustrating and worrying.

[charks]

All your symptoms will ease with B12 providing they were caused by B12D. I have always had a brilliant memory but when I had B12D I too struggled to find words - I stuttered as well. And experienced intense anxiety and brain fog. So much so that when I started to return to normal with B12 I felt like a genius ( in comparison ). I think this is why B12 injections are thought to boost intelligence. It does if the recipient is in the early stages of B12D. For example a relative of mine started to take oral B12 on my recommendation. She raves about it saying it has made her 'think clearer'. I think she had low levels of B12.

You sound like you aren't getting enough B12. And not likely to with your GPs lack of knowledge. I don't want to sound pessimistic but the chances of getting help from the NHS is very slim. You mention consulting a private consultant but most of them are just NHS consultants earning a bit of money on the side. Waste of time and money. Luckily this forum will be able to help you with your B12D questions and enable you to come up with a plan of action.

[BleekerStreet in reply to charks]

Thanks, that is encouraging, sort of.

[KatieG75147]

Hi BleekerStreet. I was diagnosed with B12D last summer. Like you, I had the loading doses, felt some improvement, then massively declined in the run up to my next injection at 12 weeks, which when it finally came did nothing. The GP I spoke to at that point (different to the one I had been seeing) dismissed my symptoms as CFS, despite my protests of the fact all my symptoms still matched the B12 deficiency. He reluctantly agreed to refer me to a specialist for the B12, but told me if I didn't go private it would be a ridiculous wait and as far as he was concerned there was nothing more to do than accept I had CFS. Luckily I have insurance through work and was able to have a more productive conversation with a GP through that, as the referral I had was useless as he hadn't directed it to anyone in particular. Went to see a private haematologist in December. This was some help, and he was able to supply more helpful treatment instructions back to the GP, but I would be hesitant to call him an PA/ B12D expert, as his main focus was leukemia. But he definitely was more informed that the GPs and I have managed to get some better treatment off the back of it, albeit still not what I would have settled on if I'd had more energy to fight. In terms of symptoms, I think everyone's experiences are different. I've never had palpitations with mine, but the others are familiar. My brain fog started to ease in the first few months of this year. That's following a second course of loading doses in late December and now having six weekly injections, following the haematologist'appointment (I still had to fight for this, so go prepared if you do see someone). So in my experience, there is hope, but it's a very long and exhausting journey.

Good luck, I hope you manage to get some success.

[BleekerStreet in reply to KatieG75147]

Thanks

[Cherylclaire Forum Support]

Not a whinge at all - it is difficult to know what to worry about, isn't it ?

If you already have a heart condition, it is only sensible to have concerns. Having anxiety as a symptom makes it harder to discern for yourself whether this is warranted.

Re heart arrhythmia: I became concerned when my occasionally thumpy heart became a daily (and nightly) occurrence back in September 2019. It would wake me suddenly which was a bit disturbing, especially since both my parents had died of heart problems.

The GP got me referred to the hospital for a 24-hour heart monitor. I had had 4,000 "episodes" - ventricular ectopics - which did not warrant further investigation and was left to the GP to deal with. Additional electrical signals in lower part of the heart. This condition can appear suddenly, is alarming but harmless, but does not develop into anything worse. It can go as suddenly as it starts - so I decided not to take the medication offered (Bisoprolol) and just wait. A month or so later, it did go.

I thought worth finding out, given family history. I certainly, up to that point, had dismissed the occasional thump as just another B12 deficiency symptom to put up with- possibly connected to my anxiety (?)

Strangely, I had been checked previously (early 2017), pre-op for badly healing broken shoulder, and told I had a slow heartbeat (sinus bradycardia) - and the nurse had to check that it was still okay to put me forward for the op.

Perhaps further investigation would help you with the anxiety regarding heart-related symptoms ? One less problem.

My GP noticed that the usual treatment (injection every 3 months) was not stopping my deterioration, and had my MMA tested. This, after inital loading injections, should have been within range, having made appropriate links with the injected B12 and moved on to do work at tissue/cell level. Mine wasn't, despite now being flooded with B12, so functional B12 deficiency was diagnosed and confirmed by the testing lab - after renal problems eliminated as cause. This meant the introduction of B12 injections at 2 a week and finally, some improvements ! Eventually, three years later, my MMA tested as within range for the first time on my 6th test.

All my symptoms have improved - not gone, never to return, but controlled. Some get better results and quicker. They are less likely to be here on the forum though - way too busy !

[BleekerStreet in reply to Cherylclaire]

Thanks. I have had a number of monitors but they have shown nothing, but they have not coincided with an episode of palpitations. Pretty sure my cardiology appt next month will once more say that I have no heart issues, which would suggest the infrequent problem is B12 related. Maybe the cardiologist will be able to advise. Hoping so. Thanks for replying. Hope your own condition is under control.

[Cherylclaire Forum Support in reply to BleekerStreet]

The cardiologist should be able to set your mind at rest.

My condition very much improved once on frequent B12 injections. Not quite who I was - but certainly rid of the nightmare life became. All good.

I still think my heart problems were to do with B12 deficiency.

Just like hair loss, bleeding gums, loose teeth, air-hunger, joint pain, stiff feet, confusion, cognitive issues, dizziness, wordfinding problems, mood-swings etc - never the same day twice. This must make it hard for GPs to identify - but way, way harder for those of us who have to live with it (and long-suffering partners).

By the way, in six years, I have never actually met an "expert" in B12 deficiency, despite my GP's best efforts to find one. I honestly feel that she knew more than most, just did not realise it.

The nearest I came was when I was sent to a senior ENT consultant, who recognised that I still had B12 deficiency symptoms, despite by then self injecting every other day. I was starting to think there was something else, something being missed - he told me that I was doing absolutely the right thing, to continue at that frequency, to be persistent as it would take a long time to get better. He also agreed that saliva duct strictures had compromised my ability to get useful B12 into my system (protective haptocorrin originates in saliva). No tests necessary - he just knew what he was looking at.

Recently, my Oral Medicine consultant has been talking to B12 experts, who have completely changed his attitude to my self injecting regime. He has now told me that I should not try to reduce my injection frequency any further as my body would not cope with less, and that tablets would not work for me at all. A complete reversal of attitude - which is why I like him: not afraid to learn or admit to mistakes. No more nagging about "sky-high serum B12 results" - leaving him free to concentrate on my angular cheilitis and burning tongue, which are his area of expertise.

I'll leave it to him to decide whether or not these are B12 symptoms. I think yes: especially since he has not managed to get the expected culture to develop. I'm also not averse to being proved wrong !

[B12life]

what was your b12 level before injections and was it a serum or active b12 test?

Do you have confirmed heart issues or just issues that you have dealt with. I agree with CherylClaire that getting a heart issue ruled out won't hurt.

I had never had heart issues up until my b12 deficiency. Then I had a high resting heart rate of 105. And was having strong palpitations esp at night. I was close to going to the ER but never did. I also was short of breath and of course always exhausted no matter how much sleep along with the severe brain fog and neuro symptoms.

It took about 3 or more months of frequent injections to resolve my heart palpitations. Much longer, maybe 1.5 years to resolve the high resting heart rate. It takes a long time to get depleated (years), thus the healing takes time as well.

I looked back historically at my tests over the years and sure enough my b12 was gradually decreasing over 4 years until I was severely low.

I kept trying to space out my injections and would end up back to ground zero. My lowest serum b12 was 190 before any injections, so not incredibly low.

[BleekerStreet in reply to B12life]

Thanks for the reply. Yes, I had a heart attack in 2018 with very strong AF for about a week after the incident. Palpitations began about six months later and are infrequent. Been checked about four times for heart related issues, but the monitoring is yet to coincide with an incident. Last one was prior to my PA diagnosis, and I have the follow up meeting next month (only 20 weeks after the test!!). In fact, it was the cardiologist who identified possible PA and got the doctor to test. I think a serum test? So I am hoping he might be able to advise. I suppose I should wait to see what he says, then take it from there. Glad your symptoms settled down. Had my last B12 jab on Weds, no difference at all. In fact, so breathless walking the dog today I could barely move. Desperately anxious and low as well, but don't really know why.

[B12life in reply to BleekerStreet]

b12 deficiency can cause anxiety and depression, as well as the fact that you feel unwell will also cause uncertainty which in turn causes anxiety.

Keep up the injections. they will help with all of it. Glad that you are following up on the heart test and hope that the b12 will help you like it did me!

Do you know what your b12 level was right before any injections?

[witchcat43]

look into The Cambridge Iron Clinic…Dr A K (not sure I can mention his name here) is supposed to be brilliant with PA/B12 issues.