Hi ,
I’m newly diagnosed with PA, Still having neurological symptoms of para thesis in my arm/ hand - I’ve now had 22 injections of B12 since the end of Feb and continuing whilst my GP awaits advice from a haematologist. Every time the injections are stopped or a gap longer than a week my BP shoots up to high figures ie 170/103 , during injections my BP returns to a more ‘normal’ level of 126/90- has anyone else experienced this high level of Bp when there’s a gap in injections?
This is exactly what is happening to me. I am in the USA. 54 years of age. Keep being told menopause is the culprit although BP drop w/ B12 injection. Let's share what we learn if you are comfortable. I'm awaiting an appointment with a hematologist at UCLA.
Hi,
That would be good to share our experiences…. I’m in the UK. My GP has written to a haematologist for advice, so I’m just waiting to hear!
I found this article earlier which may be of interest to you..
😊
Thanks for the article!
Thank you!
Hi,
The haematologist gave rubbish advice to my GP I’m sorry to say- seemed to know little about high BP and P.A.
I’m wondering if I have high levels of homocysteine and every time I have a B12 injection it lowers the homocysteine level (which causes high BP/ neurological symptoms, gastric disturbances etc).
hat triggers homocysteine?
“One of the more common causes of high homocysteine is a B6, B12, or folate deficiency. This is because the body needs these nutrients to break down homocysteine. A lack of them can lead to a buildup of homocysteine in the blood.”
Found this article …
ncbi.nlm.nih.gov/pmc/articl...
I’m finding this whole process of working out P.A a minefield with my GP having very little knowledge 😫
When my homocysteine and MMA were high this coincided with a BP increase from 120/80 or lower to 140/90 or higher. I was in such bad shape before injections I had balance/walking issues and visual disturbances where stationary objects appear to move which I think is called oscillopsia and yet I still had to battle GP to prescribe enough injections. Since I'm 54 and female all - 100% - of my odd symptoms which started years ago were deemed due to peri-menopause and then menopause. I had to recollect my maternal grandmother (Oma) getting bi-weekly B12 injections when she visited us in the USA to even think about researching and then need B12 injections. It is very frustrating. My GP will not prescribe more than one injection per month so I'm hoping a hematologist will. Will find out and share...
I did read menopause in and of itself can cause elevations in homocysteine. So that's fun. In my case MMA was also elevated which pointed towards B12/PA. Question for you...when your most severe symptoms emerged did you also experience gastritis and/or repeated episodes of diarrhea for more than 3 days? I'm honestly scared of getting a stomach scope although likely needed. Have you had one and if yes was anything found related to PA gastritis? My parietal and intrinsic factor labs came out negative.
And one tidbit in case it helps. MTHFR. I had mine tested and it came out positive as 677TT. This genetic trait can result in high homocysteine and MMA as well. My symptoms are B12/PA related based on a ton of research, to be certain, so I appear to have both a folate and B12 problem.
Can't wait to hear the outcome. My experience was hematologists just wanted to take me off b12 and absolutely don't understand b12 deficiency at all!!!
I found neurologists to handle it better. But the BP may normalize once you get your b12 levels up.
I found going to specialists an utter waste of time as in the end it was all just b12 injections I needed and since b12 can't be tested accurately after injections are started then I just had to base my results on the gradual improvement.
Yes. I still ensured I ruled out other things and I did have wild symptoms like high resting heart rate and BP, heart palpitations at night (injections in the morning). So if seeing docs about b12, keep your expectations low. Very low. And come prepared to defend your need diplomatically or just walk out and refuse to pay.
Again this article was the best thing to back up my arguments in the US. Docs can discredit us, but can't easily discredit medical science. I was diplomatic with it, but my doc warned me that hemotology wouldn't understand and boy was he right. I hope you have the opposite experience and prove me wrong. But buyer beware.
ncbi.nlm.nih.gov/pmc/articl...
At least in the USA it seems there is zero knowledge around PA and related symptoms. So truly frustrating. Even the pharmacist questions why I am being prescribed B12 injections even at a 1 per month ration (pulling my hair out).
hello , yes my blood pressure was creeping up to high 141 and then 153 systolic , but diastolic low before b12d diagnosed.
Dropped considerably once s.i. and pulse hard to find. Now both lowish for my age but in normal range.
Thanks for the reply. That’s good to know it can potentially be kept under control- seems to be if I don’t have an injection for a week or more it shoots up 🤨
I think it shows you need more frequent injections. x
My systolic also went up although potentially related to dehydration from gastritis since dehydration can cause diastolic elevations even when systolic is under control or below 130.
That's very interesting. I drink water a lot and I know I have malabsorption, dehydration is something to consider.
And lastly if increasing fluid intake - be careful and do not drink too much water all at once of course - doesn't lower diastolic try magnesium.
Oh my...menopause moment...I meant to say, "My diastolic also went up..."
I am really interested to read this post. I have never had high blood pressure until my PA diagnosis (with so-called 'neuro phsychiatric' involvement). I now have levels of up to 160/100 recorded. I was convinced a contributing factor was severe sleep disruption from terrible anxiety (nightmare-like sleep disturbances). I would be most grateful to hear from anyone else who has ended up with high blood pressure in the society to see if this likely linked to the condition.
I've had some scarily high BP readings over the last couple of years.
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