I’m currently pursuing a diagnosis of PA, though the pandemic has slowed things the last few months. Low serum B12, high antiparietal, nerve symptoms for many years, anemia symptoms for two years.
My question is about blood pressure symptoms. I have felt thumps, sharp jolting pains, and drops. I also have intracranial pressure, often when I go from sitting to standing. It pounds in time with my heartbeat and goes away after a few minutes. Two cardiologists and a home monitor have found nothing.
Has anyone had similar? I’ve been self-injecting once a week for a month now, still having these issues.
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siamesefrmsiam
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Hiya I suffer with palpitations through PA. Took me a long time to get diagnosed, I even at one point was taken to hospital in an ambulance as I was fearing I was having a heart attack! Sadly just a side effect of my PA, however mine have eased a lot! I have also had similar blood pressure symptoms. I am only 21, had various blood pressure tests and found to only be raised when I was having bad episodes of panic and anxiety, so was out onto a mild medication. Sometimes I’ve felt those pains and strange sensations just due to my B12 levels and my BP has been normal and in rage! It’s a funny condition that always seems to present itself in new and different ways! If there’s anything else I can do to help feel free to pop me a message! Take care
Yes, palpitations are so anxiety-inducing, becomes a chicken or egg scenario. And at the doctor, I'm often complimented on how steady and low my bp readings are. PA is so strange. And thank you
Yes palpitations are just one of the symptoms of.P.A. . There are so many it’s incredible But luckily no one get all of them - just a choice selection . These symptoms do overlap with other conditions But with the correct treatment of adequate b12 injections , combined with enough folate , everything will improve. The rate of improvement will depend on how long you have been deficient in vitamin B12 . It’s getting the right treatment that’s so difficult , as doctors have poor knowledge of P.A. It’s even difficult to get a diagnosis as well. . I’ve had to turn to self-injection to keep well .. Having P.A. means having life-long treatment . You don’t mention that you are receiving any B12 injections . I hope that you are . Best wishes ,
I have very little to add to Wedgwood's very comprehensive answer other than to second that, while I appreciate that it would feel good to see more improvement having done 4 or 5 injections, it might take much longer to come completely right.
Many people also benefit from taking a daily broad spectrum multivitamin and mineral supplement - cheap supermarket ones are as good as any.
This may boost the levels of everything you need enough but be aware that you might also have low levels of iron and vitamin D to complicate the matter and it would be good to monitor your potassium and magnesium levels with blood testing too.
At least make sure your diet is rich in all of these. (You can Google them to find rich sources that you would like to eat or drink).
It is only my theory but I think you will be likely to be better in the long run with slower but surer improvements on weekly jabs than you will be if you increase your injection frequency and risk upsetting your body's balance.
There is a lot of talk about methods of monitoring nerve damage but in practice the best way seems to be from observating your body's physical responses - nerves are such tiny strands they are hard to pick up with imaging techniques but, by nature of the beast, you can "feel" if they are working OK or not!
In a way they are like wires carrying tiny electrical impulses around the body: if they are working then all's well (the lights come on and go off when you change the switch and you almost take them for granted), if they are alive but damaged they hurt or you can feel them a lot (the lights flicker and may come on or go out at random) and if they have died you can't feel them at all(no light, no matter what)!
Our bodies are brilliant at healing nerve pathways but it does take time - usually at least 6 months and often 18 or more if the healing process is set back in any way, eg with other deficiencies.
Brilliantly well done for getting this far! Now keep going and don't lose faith, obviously while remembering to keep your mind open to other possibilities too.
Please come back and ask further questions as they arise.
The best way of testing nerve functioning is to have nerve conduction studies carried out. It’s like testing an electrical connection with a multimeter. If the nerve is damaged then it will lose a lot (or all) of the signal intensity.
However, the cardiovascular symptoms described are unlikely to be caused by a B12 problem. High homocysteine (which can be caused by low B12 or low folate) is well known for causing cardiovascular problems. Getting B12 and folate levels back up should fix low hCys within a few weeks.
I finally had homocysteine tested last week, but this was after a few weeks of injecting. Results were normal, right in the center of the range. Don't know if injections would have already changed the results.
I suspected the cardiovascular is something else. I will talk to a cardiologist. Thank you.
Thank you for your detailed response! I have had low vitamin D for a few years and have taken supplements. But I will look into a daily multivitamin. Recent testing showed high iron, but I will get potassium and magnesium looked at too.
I have seen vast improvement of dexterity in my left hand since injecting. It was my most affected area- loss of strength, precision, and sensation. So I will try to keep the faith and trust things are improving everywhere
I suspect I've had low B12 for almost ten years, starting with bowel issues and slowing progressing to nerve damage and now fatigue and anxiety. I've seen a variety of specialists, none of whom suspected PA or any vitamin deficiency. It took my primary care physician to test for B12. My loading doses never happened, due to the pandemic, so I'm self-injecting weekly now. And thank you!
It’s amazing how little doctors understand about Pernicious Anaemia/ B12 deficiency . I asked a doctor how long was spent on learning about P.A.at medical school “ - about an hour one Friday afternoon “ was the response. That’s shocking ! I mean we all know what Pernicious means ,don’t we.? Knowing what I know now about P.A. , I honestly believe that my mother died from it without ever having been tested . It does take many years . But it’s pretty awful . It will not happen to us anyhow siamesefrmsiam . Do you really come from Thailand , a country I visit every year?
No, sorry to confuse! I'm from the US. I just really love Siamese cats lol
I am now seeing B12 everywhere I look in my family. It's become a boogieman, lurking in a history of personality disorders and dementias. Amazing how little known it is!
Yes , your observations are starting to tell you what has happened to blood relatives . The dementia that comes at an advanced stage of the condition ( I always like to refer to P.A. as a condition , not a disease or illness !) is not at all the same as Alzheimer’s .
And the symptoms of this condition can be completely annihilated if caught early enough and treated and tailored to patients variable needs , by a really cheap vitamin , which most of us are able to self-administer. And no dangers of overdosing ( remembering what my doctor told me “ Too much B12 is toxic “ !. And here we are in 2020 arguing with doctors, who should take it upon themselves to find out about it , and believe what their patients tell them . This would save the NHS millions , and save patients from suffering . End of rant ( for today , that is )
Orthostatic hypotension. Something I've had since I was six years old (when I was about 6” taller than the other kids in my year). When my doctor put me on meds to lower my blood pressure it got unbearable. We agreed that I needed ‘high’ blood pressure to get it up to my brain (190 cm from the ground).
That makes sense, as I don't feel the palpitations when exercising (presumably when heart rate and pressure are raised). I have never felt faint or dizzy, just strong head pressure. I will look into, thank you.
With all the great explanations I just want to add. Stay. with the rollercoaster of symptoms. Try and stay calm think of it as healing /repair I know hard and very scary at times.
Check everything as mentioned. . Have any test offered to rule out or in anything else going on.
Hi I just want to add (it may or may not be relevant), I have read from the NHS website with regards to B12 that even though Hydroxocobalamine B12 is a common type of B12 in UK but it says in their website that this type of B12 isn't advisable for people who have heart palpitation. I have been searching for B12 injectable Methylcobalamine but can't seem to find any good suppliers.
Thank you for letting me know, I was not aware of this. I have yet to try hydro, only cyano and methyl.
I ordered methyl from this Australian company a few months ago, and was pleased with the quality. The ampules are manufactured in Japan. I live in the US and while it looks like they're not currently shipping to the US, they seem to still be shipping to the UK. vitaminb12online.com/
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I suffer with palpitations through PA. Took me a long time to get diagnosed, I even at one point was taken to hospital in an ambulance as I was fearing I was having a heart attack! Sadly just a side effect of my PA, however mine have eased a lot! I have also had similar blood pressure symptoms. I am only 21, had various blood pressure tests and found to only be raised when I was having bad episodes of panic and anxiety, so was out onto a mild medication. Sometimes I’ve felt those pains and strange sensations just due to my B12 levels and my BP has been normal and in rage! It’s a funny condition that always seems to present itself in new and different ways! If there’s anything else I can do to help feel free to pop me a message! Take care 
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