21yo dd has a pulmonary embolism

[QuebecBagnet]

Just a bit shocked really. No risk factors, she doesn’t even take the pill.

theyre talking about further investigations to see why she’s developed a clot so not sure what that will be. She’s already got a couple of auto immune conditions, fibromyalgia and coeliac disease. Also has EDS and POTS. I know some auto immune stuff can cause clotting issues so wondering if she has another which we don’t know about yet

She’s blaming her covid vaccine

In the absence of any other risk factors I’d blame it too. It is associated with formation of clots.

Blimey hope she's ok!

Oh your poor dd & you. If she has auto immune conditions ask them to check for Antiphospholipid syndrome also known as Hughes if they haven’t already.

www.google.co.uk/url?sa=t&rct=j&q=&esrc=s&source=web&cd=&ved=2ahUKEwjfu-6LpbX7AhWcQEEAHfgaDGYQFnoECAgQAQ&url=https%3A%2F%2Fwww.nhs.uk%2Fconditions%2Fantiphospholipid-syndrome%2F&usg=AOvVaw0uJ5v68_kEE29JiGJH8qKX

Dh has this. He had a pe about 6ish years ago. He is on blood thinners for life but day to day is grand.

I hope your dd is recovering well.

I should add I have it & RA. Mine was diagnosed after miscarriages. I take a daily aspirin & clopidogrel. Also have Sjogrens - often misdiagnosed as fibromyalgia. Good luck.

Thanks for the replies.

really interesting, my dad had srojgens syndrome

she has been referred to haematology so hopefully they will get to the bottom of it if she does have a clotting problem. They’ve sent her a blood test form already so she has results for the appointment

Just read the link about APS and she has some of those symptoms. Pins and needles, brain fog, tiredness

Just a thought but does your dd have a rheumatologist? Maybe ask for a referral to exclude APS.

It doesn’t always show up in blood tests. It can be hereditary. Dsis & one of my dcs has it. As do some of my mum’s paternal cousins.

Good luck.

Hi! Sorry to hear this happened to her- I’m 27 and same thing has happened to me- I’m trying to push for a referral to but no luck so far- has your daughter had any results back? X

Extremely unlikely to be the COVID vaccine. I know I will get bashed for saying that but the truth is there are other, much more likely, causes of a PE.

All her results came back clear, so no known clotting conditions which have been picked up. Hope you’re doing ok. It’s all a bit scary. Did you have any risk factors like being on the pill?

Sure, but she doesn’t match any of the more likely causes 🤷‍♀️. It’s all a bit of a mystery. Maybe not the vaccine but possibly covid. I have read some stuff that says if you’ve had covid you’re at higher risk for a clot for six months afterwards. She was just in the six month bracket since having covid. She had the vaccine booster a few months after having covid. So that was nearer to her PE. Both do raise the chance of a clot but I guess we’ll never know.

they’ve said she’ll be on blood thinners for life but she’s a total nightmare and never orders her repeat prescriptions. Don’t think she’s had any for weeks!

Was she texted for factor V Leiden? It's hard to test for apparently but being diagnosed with it explained my 3 DVTs.
I'm on blood thinners every day now. They've improved amazingly- not like warfarin in the old times. I take one tablet of enexoparin a day and I'm fine.

Yes she was. The haematology guy said they’d tested her for something like the most common 5-7 clotting disorders but they can’t/won’t test her for all of them.

I do wonder about doing something like a 23 and me test for her, see if that throws anything up.

I know this is an old post but my husband is going through the same and family history has revealed AAT-1 Deficiency which is linked to blood clots but doesn't seem to be commonly linked so may be worth checking that.

Thank you. They tested her for the “five most common” clotting disorders (not sure which) and she was negative for all five. They’ve said they won’t do any further testing as it won’t alter treatment. Either she has a more obscure clotting disorder and needs to be on thinners for life, or she had an unprovoked clot and needs to be on thinners for life. 🤷‍♀️

she is happy being on the thinners for now. She is terrified of getting another clot particularly as her symptoms weren’t that severe, she’s worried she might miss any signs and just die in her sleep. It’s a shame there’s no definitive way of knowing. If we knew it was because of Covid or the vaccine she could maybe come off the thinners, obviously there’s a risk to her being on thinners.

I was going to ask if she’d had it - seems to be the only
correlation for the huge spike in otherwise healthy young fit adults falling ill with blood clots and heart conditions

Of all the anti coagulants apixaban has the best clinical data.

It is really hard, they've said the same about my husband. He will be tested for the rare genetic deficiency because his sister has it but its not publicised readily that it can cause blood clots so could be easily missed. I'll let you know if anything comes back.

@Whitegrenache I think the treatment is dependent on the cause as my husband got additional clots while on one type so they have changed to another.

While I was considering the vaccine as a cause, I realised how easily we can be thrown off course having a 'logical' cause stuck in our minds so I'm trying to avoid hypothesising and just look for different things to mention to my Husband's doctor.

Yes. We read this. She’s on rivioxiban and gets stomach pains and really heavy periods. So she saw her gp asking to go onto apixiban and he refused and said they’re all the same. I’m going to print off the research papers and send her back armed with them. 🙈. I hate how wrong doctors can be and just sit there either lying or incompetent.

Studies have shown that heart issues and blood clots can be linked to having Covid.,

I had PEs a couple of years ago. When I tell people now that I've had them, they assume the vaccine but it was before the vaccine was available. I was tested for the covid antibodies, which I had, so must have had an infection even though I'd never had a positive test at that point.

I hope your daughter is recovering well, I'm on apixaban and have very heavy periods as well as the usual bruising and bleeding from small cuts.

OP, wouldn’t it be the Haematologist rather than the GP changing her meds?