Blood pressure

[Justiina]

I have always struggled with low BP, often has been difficult to measure, even at doctors.

My BP is often 90/60 which makes me feel awful. Since B12/B6/B1 injections my BP has been around 110/70 and I feel good. I have tried to extend the gap between injections but if it goes over 10 days my BP drops down to 90/60 and I feel incredibly heavy.

Low BP doesn't make dizzy nor I feel like fainting, gotten used to it or my body has gotten used to it. But it makes me feel heavy like wearing led armour. Atm I am thinking using BP as a guideline how often I get my injection as there are nothing much they do about low BP. I use salt and drink coffee which has very little impact if any.

Anyone else having issues with low BP?

[JillMaryC]

Hi Justina, yes my BP was always generally low. However after five years of increasingly being unwell then B12D diagnosed, subsequently my BP got shockingly low during episode of ataxia, dizziness and what emergency GP said "let's call it a type of vertigo and how about something for the nausea?". At that time I was 82/53. My GP finally agreed to a 24 hour BP monitor and then saw the results"oh that's low!?!" An Endocronologist later said nothing to worry about. Aaaagh. Not sure why it's happening, but think the whole metabolism is out of balance, so having to work incredibly hard. So, have you asked your doctor to put you on a 24 Monitor? Might help to track, gain some evidence. Wish you well.

[Justiina in reply to JillMaryC]

Oh my that's low ! I don't know what is lowest for me as sometimes the device just says error, home and at doctors and then we try again until we get reading.

Did your BP normalise? Tried florinef?

I had a chat with nurse today she was like oh dear 90/60 isn't good at all! I figured they'd just congratulate of having low BP instead high. She told me to record my BP for two weeks and then will see how to continue, if proper monitoring is necessary or would it slowly stabilise on vitamin B injections and I need it once a week to feel well. I get to decide when to get injection, I don't have to self-inject atm.

[JillMaryC in reply to Justiina]

No I haven't heard of Florine, will check it out. My BP currently feels better, I'm not so faint, nauseas, dizzy etc. I kept a diary, then took an average. Finally GP organised the 24 hour monitor device. Honestly, I thought it would rocket up, as each time the machine puffed into action it startled me, but still it was low. That is amazing that you get to decide when yiu get the injection. Yiu must have heroic GP support!

[helvella in reply to JillMaryC]

The product is Florinef, not Florine. Making this clear in case you are trying to search for more information and not getting what you want!

en.wikipedia.org/wiki/Fludr...

[JillMaryC in reply to helvella]

Thank you

[Ronja]

Hi, just been recently diagnosed with pa ( but actually think I most have had it for years) but have had low blood pressure pretty much all my life. During pregnancy went as low as 60/40 , but the doctors never have been really concerned with it, cause low is better then high, right?

Not sure if this is related to pa, would be nice to know though!

[Justiina in reply to Ronja]

I have understood PA could cause low BP. Yours has been very low, sounds awful.

For me there is some type of connection ,but I get B1 and B6 as well as I have some sort of mild mitochondrial disease causing hiccup in crebs cycle. So could be those doing the trick for me.

[Pinn14 in reply to Justiina]

Interesting. How was that 'hiccup' diagnosed?

[Justiina in reply to Pinn14]

In my case diagnoses based on symptoms and the fact that trialing neurobion (b1+b6+b12) injections relieved most of symptoms. Other illnesses causing similar symptoms was ruled out by testing.

It's not exact science in mild cases. My symptoms were the same for two decades so it rules out progressive conditions.

[BirdlessBox in reply to Justiina]

So interesting! I have a problem with the Crebs Cycle apparently as I have an SDHD gene mutation. This was discovered because I had a Pheochromocytoma and they wanted to see if the could find out why. I have never known if there was anything I could do to compensate for it - this is the 1st thing I have ever heard.

[Justiina in reply to BirdlessBox]

Oh, well I assume it's not that common subject as vitamin treatments are not "real treatment" for mitochondrial diseases. But I have understood its common procedure as there are no other type of treatment that could fix the problem. vitamin B combo is workaround that might work.

There is so wide range of different conditions that combo B might not work for you , that's why it's not even mentioned, but b6 and b1 are important for crebs cycle and needed to make energy from carbs and aminoacids.

I would definitely ask if in your case it's safe to try vitamin treatment.

I cannot function without my shot as I need B6 to help making energy from aminoacids. We still don't know why, but trying to figure it out.

[Wagonwheel]

Hi Justina

Thanks for writing about this I’ve had low bp for years 90/60 often lower, I didn’t think I had any symptoms - but I do now with your perfectly described as akin to wearing a lead suit of armour!

I’ve not been able to run much over the last 3 years because my legs feel like they’re full of lead - it would make sense to me that there’s a link between B12d / low bp/ lead armour.

I’m interested to hear if monitoring your bp helps in managing B12d levels.

😁

[Gsmandin in reply to Wagonwheel]

My BP in the drs office was 60/40. Dr not concerned. Said to use more salt and be careful when getting up from a lying or sitting position

My B12 level was 215, on the low normal level

I had very frequent palpitations, vertigo off and on over the last 3 years, pins and needles in my feet and legs becoming more severe where they involved my whole legs and felt like someone was skinning my legs with a knife at night some nights. Dr called it Restless Leg Syndrome and told me to take magnesium and calcium at night which didn’t help

Finally I asked him if I could have B12 injections and he said sure and ordered them once a week

Have been on them for just over five months

My BP goes up to about 130/60 during the week and then starts dropping towards the end of the week until I have my shot. My palpitations have disappeared, vertigo is much better and my legs hardly hurt at all most nights, just a little tingling in my toes

I am not worried about whether it is PA or just B12 deficiency, not worried about intrinsic factor antibiotics etc as long as I can continue my weekly injections.

I am a believer that I need them

[KimberinUS]

my bp was 90/68 for years. after eradicating h pylori it is now 120/80 which scared the crap out of me, so i mentioned it to nurse. she said oh thats good. my prior doctor never mentioned that my bp being 90/68 was low so i thought my new doctors ought to be made aware of this increase.

nope, no one cares. glad to know it could be that the previous was possibly low due to h pylori messing with b12 /and iron and that my new higher bp might be a good thing.