Need advice about the vaccine, but who do I talk to? (Gp can’t help)

[SomeKindOfFloppyWeirdo]

I’m posting here in the hope that someone has been in the same situation or is a doctor and can point me in the right direction

My covid vaccine is booked for next week, quite excited about it, but I have a health condition that leaves me with a high heart rate and sometimes quite badly short of breath.

I talked to my gp about this, as I’ll likely have Astra Zeneca vaccine and there is the tiny tiny possibility of a blood clot. While I’m not too worried about this, one of the symptoms to look out for is shortness of breath. I raised this with my gp, as I wasn’t sure if I would recognise whether the shortness of breath was due to a potential blood clot, or just my usual shortness of breath. They weren’t very sure, but did advise that I should postpone the vaccine if I’m feeling ill/short of breath in the day. (I’m short of breath pretty much all the time so that’s confusing/frustrating as I actually want to be vaccinated!)

Is there any kind of vaccine advice line/place that could help with this? I’m between consultants for treatment at the moment as they’re passing me between consultants while they try to work out what’s actually wrong with me, so no one to ask for advice there.

Or a way to ask for a different type of vaccine? I’m 43 if that makes a difference.

Thanks for any advice!

No advise other than you could wait in
The queue. And once they announce what brand vaccine it is. Then just walk out.

Someone did that when I was there

That’s possible, thanks! Our local site seems to be 100% Astra Zeneca right now. I’m worried they might think I’m a bit weird if I suddenly leave though! I’m sure they’ll be fine with it if I explain, but if I don’t have it I’ll have wasted a slot for someone else. (Possibly overthinking this! )

I wonder if there’s a way to contact the vaccination centre beforehand to explain/ask? Has anyone done that before?

Have you tried calling 119 for advice?

It's a tricky one really as the vaccines are fairly new I doubt anyone has a definite understanding how they affect every single different set of medical issues before vaccination. You could take comfort in that no/little knowledge on your specific medical conditions means that there's not an obvious or common reaction from any vaccine but that's just my cynical p o v nothing with any medical scientific substance to back that up

119 will likely tell you to talk to a GP, which isn't much help. Try a different GP at the practice to get one who's willing to give definitive advice?

Did you have covid, as they can cause tachycardia? Heart effects are rare from vaccines, but are as common with each vaccine type, which I would think that would be more of a risk for you than blood clots with your history.

For looking after yourself... do you have a blood pressure monitor at home to keep an eye on your heart rate? Do you live with someone who can keep an eye on you? Can the GP arrange a full blood count before and after vaccination as you're concerned about symptom recognition?

Thanks well It’s a frustrating condition, as the main parts are vaguely known of, but these “extras” are even baffling the cardiologists. I get a lot of “well something’s wrong but we don’t know what!” which is great! But you’re right in that I haven’t seen any issues raised in people with my condition so I’ll hold onto that good news!

MRex thanks. Yes, frustrating if they just refer me back to a gp! There’s is another gp I could try - she’s been great in the past at getting to the bottom of ds’s issues.

I’ll definitely ask gp about a full blood count before and after - what would I need to ask them to look for, what kind of discrepancy in the before and after readings would be useful to look for?

I didn’t have covid that I was aware of (ds had it badly in the 1st wave though so it’s possible I had it asymptomatically.) These symptoms pre-date that by about a year anyway. Heart itself is structurally perfect no irregular beats - just borderline inappropriate sinus tachycardia. Despite the shortness of breath, my blood oxygen is always 97- 100%, even when I feel really short of breath. Blood pressure is always low end of fine, and I have a monitor at home.

The other GP might be more useful then. Whichever vaccine you get it is worth having a plan for doing (and writing down!) lots of blood pressure readings before and after, so that you have clear information about any impact. I've always found GPs and consultants love getting my recent readings, it's as helpful as a blood test result.

I presume you were already checked for hyperthyroidism, anemia and other easy to check causes?

Yep, blood tests all come back with perfectly normal levels of everything, lung function test was clear, heart scan clear, ecgs always good apart from the inappropriate sinus tachycardia. And of course being short of breath. (Definitely also not panic attacks or asthma.) It’s very frustrating!

Love the idea of taking regular readings of everything. I will definitely do that. I’m already taking a list of when I’m feeling short of breath, how long for/what I’ve been doing etc for the next consultant. I’ll end up with a novel by the end of it!

If you are thinking of not having it because of the risk of a clot, do also consider that you may be much, much more vulnerable if you do have a heart condition if you catch Covid... and the risk of a blood clot with Covid is approximately 9 times that of the risk with a vaccine.

Good luck!

Grimbelina

Hilariously (!) the gp did say to me the risk from covid was slightly higher to me due to my condition (understandably. And i work in a secondary school where we’re seeing an uptick in cases) but that receiving the vaccine while experiencing these symptoms could also have a slight risk (very specific to me, so I don’t want that to put anyone off!) I was like thanks, that’s a great choice

I am definitely going to have the vaccine. If you think the risk of a clot is very small, then factor in the risk of not noticing and shortness of breath being the only symptom, then that’s a tinier than tiny risk. I just wondered if there was some kind of vaccine helpline for the perpetually confused with weird ailments

(And my heart itself is actually very strong and good - last consultant thought it could be an autonomous nervous system glitch rather than the heart itself.) but I completely understand and agree that covid itself is riskier than the vaccine.

Thanks MRex

OP, I presume you are thinking of breathlessness as a symptom of pulmonary embolus, and are concerned that you wouldn’t notice it on top of your “usual” breathlessness.
However, the (very rare) serious clotting risk with the vaccine seems to be cerebral sinus thrombosis rather than dvt/pulmonary infarct or embolus, so breathlessness wouldn’t be a feature. You would definitely notice prolonged headache, blurred vision, or signs of a stroke!
As PPs have pointed out, the risks of Covid in your age group far outweigh the risk of the vaccine. It is only in the under thirty group where it begins to be relevant.
I would go ahead with your vaccine appointment as planned.

Thank you Babdoc that’s really reassuring! I would definitely notice those symptoms. This is the NHS guidance where I first noticed the “shortness of breath” comment. It really hasn’t been mentioned elsewhere, has it?

I agree the risk is low but the advice is for all clots/ embolism not just CVST.
From www.gov.uk/government/publications/covid-19-vaccination-and-blood-clotting/covid-19-vaccination-and-blood-clotting
“What to look out for after vaccination
Although serious side effects are very rare, if you experience any of the following from around 4 days to 4 weeks after vaccination you should seek medical advice urgently:

a new, severe headache which is not helped by usual painkillers or is getting worse
a headache which seems worse when lying down or bending over
an unusual headache that may be accompanied by:
blurred vision, nausea and vomiting
difficulty with your speech
weakness, drowsiness or seizures
new, unexplained pinprick bruising or bleeding
shortness of breath, chest pain, leg swelling or persistent abdominal pain“

I feel for you OP as I am in a similar boat with my pre-existing condition, migraine etc, and wondering whether I would be able to tell whether it’s the usual or something jab related.

It’s a tiny risk but I not looking forward to the wondering afterwards.

Also OP, does your condition pre-date your COVID/ your son having COVID?

I raised this with my gp, as I wasn’t sure if I would recognise whether the shortness of breath was due to a potential blood clot, or just my usual shortness of breath. They weren’t very sure, but did advise that I should postpone the vaccine if I’m feeling ill/short of breath in the day.

That's a really odd response from your GP. Thousands of people have respiratory conditions causing shortness of breath and thousands have had the AZ vaccine. Very strange your GP would advise not to have it due to SOB.

That’s the same one I’ve seen mossrock Sorry to hear that your having this stress too. It’s exactly that, isn’t it? Happy to have the jab, not looking forward to trying to judge any side effects for up to 4 weeks after.

Not for the first time I wish bodies could just print out a status update from your ear so you knew what it was complaining about!

My symptoms all pre-date ds having covid. The main symptoms started about 10 years ago, then these new ones (breathing and heart rate) appeared out of the blue late 2018. Had a year of hospital appointments in 2019, and still not much closer to an answer (apart from they’ve found lots of things it isn’t !)

Very strange your GP would advise not to have it due to SOB.

And yet it happened!

He said if I should rebook it if, on the day, I felt unwell (which seems common advice), and with my shortness of breath comes dizziness and faintness. So whether he was saying “avoid it specifically because you’re short of breath” or “avoid it because your shortness of breath causes dizziness and faintness, which won’t be great on top of potential mild after effects.”

I can’t tell you which he meant, mind reading is sadly not one of the side effects.

Apparently neither is grammar!

I’ve read that Pfizer can cause palpitations and a fast heart rate. Think Israel are investigating a possible link with heart failure and myocarditis with the Pfizer vaccine - AZ might actually be the option for you.

RoseWineTime Yes, I’d heard that (and not worried to much!) Do you know what, I might just get them all at once and let them fight it out inside me

Sorry conywarp I read back my reply to you and it sounds quite snippy. I was in two minds about starting this thread as I was worried someone would accuse me of being an undercover anti-vaxxer (which I am definitely not!) so I was a bit over sensitive. Sorry

It is very difficult. I also have a number of conditions that make me clinically vulnerable and also have some of the symptoms to look out for often daily (some automatic nervous system involvement too).

However, when I look at my perceived risk (which is obviously not a fixed value) and the statistics of clots with Covid etc., I know it is better to have the vaccine and if I have an increase in any of those symptoms I would attend A&E.

Thanks grimbelina I feel the same way - there’s no way I’m not getting this vaccine!