Severe dangerous low blood pressure all day destroying my life, gp can’t find anything. Please help

[Fineyoungtang]

This is seriously seriously affecting my quality of life

i cant put into words how bad this is affecting me

all day I’m suffering

the highest bp I ever had measured was 85/40

This is with like 10 strong cups of caffeine, crazy amounts of of salt and water and compression stockings

i feel like a zombie, passing out, falling and injuring myself, can’t get any work done, blurry vision all day, today i was found unconscious on the floor with bp 65/30

its now affecting my heart and I get chest pain and tachyrdia when it falls this low

blood tests are all fine, iron, ferritin, vitamin d etc

gp doesn’t understand, says it no big deal

what do I do, what specialist could help me

The obvious question is have you seen a cardiologust? And are you eating normally?

Yes, they didn’t find anything. Other than tachycardia. And yes I am

Intermittently I also suffer from low systolic pressure (~60) and also low heart rate (30-40!) but these periods have happened for periods of 3-6 weeks after a viral illness that typically lasts 4-7 weeks. Have you had any viral illness recently? My GP is investigating - they are looking at a possible leaky mitral valve. When has this happened and how long for? When did the symptoms start?

I also get these moments when I feel I'm close to blacking out - sometimes 6+ a day yet I can also have days where I have none. I also have days when I'm very fatigued and again days when I feel fine.

They did a tilt test? Cardiologist ruled out pots?

then maybe on to an endocrinologist. Private or you’ll be waiting ages

I second this. Also get them to check your sodium levels.

They found pots but cardiologist says this blood pressure problem is not pots? That pots can’t cause this very low bp

WTF?! If GP can't find anything they need to refer you. Personally I'd go to A&E, you could have internal bleeding. Slowly bleeding stomach ulcer that you're unaware you even have? Bowel issues? People with IBD can pass blood but unless you looked you wouldn't know it was happening, although you'd have pain I expect. Heart problems, not pumping properly?

Also NHS barrier for "fine" on test results is woefully inadequate in the real world. Symptomatic people so ill they can't work being told they're fine and won't get treated, that's even if the NHS admits there's anything amis. Get the blood tests repeated privately if you can or just get someone to look at your NHS results if they're recent.

I am a GP - bloody hell.
Has your doctor considered Addison’s Disease?

You need to change your doctor

Did you go to the hospital today?

I think you need to be admitted and have lots of bloods / tests and find out what is wrong

Next time you are unconscious go to hospital

How much salt water are you drinking? That cant be good for you

What tests did cardiology do?

Dearie me. Go back to GP, another cardiologist or suitable consultant.
For years I’ve had palpitations that make me light headed momentarily. I have seen at least 3 cardiologists and finally I had a 24-hour ecg that picked up benign ectopic beats - I’m still not 100% convinced that it’s them causing the lightheadedness as I didn’t have an obvious palpitation when wearing it. However, it showed that you do need a few goes on the monitor for anything to show up.
I also had an ultrasound of heart years ago and cT-scan on nhs more recently that my GP said was ‘gold standard’ for heart issues (had some chest pain round that time too). Sadly all
my GPs have changed bar one who I can never see as she’s so good!

Hi my DD has POTs and this has been a massive issue for her . Look at the POTS uk website . You could even look for a specialist and ask to be referred and get a second opinion . My DD has low BP , tachycardia. She has stockings , salt tablets and has been on some medication to help bring up her Bp
@PoopedAndScooped people with POTS need salt as it helps with the BP .
Forgot to mention DD also has to drink 3 litres water a day .

Please get a second opinion ! Sounds like you need to present to AE if BP so low and as GP said to get checked for addisons .

Id really push for further help, if no other cause is found and if it could be postural hypotension, many of my patients are on fludrocortisone to help but we worry about higher than your readings as low bp in my speciality

This.

You need an early morning 8-9am cortisol blood test. Asap.

I've just posted a very similar thread. My heart rate and blood pressure (although blood pressure not always as low as yours) are always very low. Gp said I must run marathons...nope, not at all.
Hope you find your answers. I'm really struggling.
They did a tilt test on me years ago. My blood pressure did drop significantly when I stood up. The advice was to get up slowly.
They said my blood pressure would get higher with age. It has but still often below 100/60.
Now it is a whole host of other weird symptoms that are just brushed off. And I feel awful. It definitely appears that the GPs ( multiple) at my surgery think I'm just being dramatic but feeling groggy, having chest pain and being exhausted is not fun.

Oh and I was told by one doctor to eat crisps to get more salt in my diet.

My DD is prescribed midodrine to raise blood pressure. There are options available.

You need Addisons excluding

Assuming it isn't that, how much salt? I did see a cardiologist but had to go privately.

He told me 3 teaspoons of salt every morning (grim but you get used to it) + full length level 3 or 4 compression stockings/tights. And at least 3litres of water every day, drinking most of it in the morning.

This made a massive difference and sorted it for me. However he was clear I could try medication like fludrocortisone or midodrine if this wasn't enough.

Blood pressure is a big deal I was in trouble at work as I was passing out all the time so couldn't do my job.

My BP has got higher with age as well but I still get times when I look 'dramatic' as it's gone through the floor.

I've got POTS and similar BP to you.

The only thing that I've added that is missing from your routine that I take medication (was on Midodrine now on Ivabradine, had to go private to a Cardiologist to get it) and I've build up a lot of strength in my legs through exercise with a PT...I do a lot of Isometric exercises to as these help to raise my BP and a lot can be done sitting. I'm not rich by any means but I had no life and felt paying for help was my only option.

Yes, I was also told to build up muscles sitting - ideally recumbent bike which I didn;t do but would have been perfect

When I started exercising I'd regularly have to stop and lie down with my feet in the air. I also could do nothing that involved raising my arms over my head.

However it did improve and it got me out of a vicious cycle of can't exercise because dizzy, don't exercise so muscles weaker, get even dizzier, do even less...

Lots of information here from my cardiologist's NHS clinic:

https://stopfainting.com/

Sounds like POTS but many GP and cardiologists don’t know anything g about it don’t want to diagnose it

If everything else has been excluded the there are blood pressure raising medications but you need to find a cardio well versed in autonomic dysfunction.

Endocrinologist and then referral to whoever on your region specialises in POtS . GP may need ti do digging or perhaps if you post where you live people might suggest a clinician

Man here with lots of fatigue problems. I had Echo and ECG. The Echo indicated a slight malfunction of heart valve (?mitral). But not 'serious', which I take to mean I was likely to get home and not make their room untidy.
Time has come for update for me in November.
Someone upthread said about internal bleeding. I have had this. Blood clotted in bladder. Rarer I think in women. Mine was a prostate gland problem.
Good luck OP