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I'm more at risk of getting blood clots so WTF do I do re: AZ?

28 replies

StitchInLime · 14/04/2021 12:18

Hi everyone. So during some fertility tests I discovered I have thrombophilia (specifically something called PAI-1 gene polymorphism). This makes me more susceptible to getting blood clots. It meant I had to have regular clexane injections to ensure I had a healthy pregnancy.

Naturally, all this talk of blood clots has me scrutinising the pros and cons of having the AZ jab if offered (am in my 40s so be offered it soonish, I guess?). I spoke to my GP who said the guidance is pretty basic beyond the 'people under 30s' and I can't 'opt' to have another jab (like the Pfizer one) as as far as he can see from the little info he has, I am not in a risk group. He admitted there was no mention of those with thrombophilia.

Is anyone else in a similar situation and / or can offer any guidance / thoughts? I mean, WWYD in my situation? I don't have any health issues btw (as far as I know).

OP posts:
paralysedbyinertia · 14/04/2021 12:21

If your GP advises you to have it, I would do that personally. Clotting is a significant risk from covid itself, far greater than any risk from the vaccine, so if clotting is a particular concern for you, I think it's a no-brainer to have the vaccine.

TheThingsWeAdmitOnMN · 14/04/2021 12:24

There are several Doctors etc on MN who maybe able to give some general advice. I'm sorry I'm not a Dr!

But just a wee 'bump'

HolmeH · 14/04/2021 12:25

I’m no expert on any of this but does it make any difference that these AZ/J&J clots are an unusual type caused my low platelets? As opposed to DVT type clots?

BramStoker · 14/04/2021 12:29

The risk of clots if you contract covid is significantly higher than the risk from the AZ vaccine

The vaccine is currently the best way to protect yourself from covid infection so unless your specific circumstances make your risk of contracting covid extremely low then I would absolutely have the vaccine

seanceinterrupted · 14/04/2021 12:33

Currently the advice for those with anti phospholipid syndrome is to not take Astra Zeneca. The clots look to be an autoimmune reaction, similar to that happening with those who have covid itself, and the mechanism may be similar to APS. I have aps, I've had covid and I've had my first AZ shot (6 weeks ago, literally the day before clotting made the news here where I am). I'm fine but I did start taking a daily baby aspirin as soon as I heard about the clotting issues. I'm seeking advice for the 2nd shot.... but we are a small country and no one has decided anything yet.

TuvoknotSpock · 14/04/2021 12:35

I also have a clotting risk. I. Am 34 so not due an Invite for a while (Also did clexane during PG - what a "fun" experience)

I'm not saying I definitely won't but when my time comes (in absence of GP guidance) I think the advice is to book an appt and tell them when you arrive that you can only have a MRNA one, they should then provide that. Otherwise I will watch and wait to see how other thrombophilliacs respond. I think there is advice on the government website 're this- let me check

ViperAtTheGatesOfDawn · 14/04/2021 12:36

I recently found out I have a hereditary clotting disorder, have already had my first AZ and will be having my second.

We don't know yet whether the vaccine related clots are linked to pre-existing clotting disorders, or even to the vaccines, and, tbh, the risk of clotting from covid and the risk of long covid concern me far more than the teeny risk from the vaccine.

Scottishskifun · 14/04/2021 12:43

Hi OP
Can you contact your local authority vaccination line? I asked my GP about it as I have a family history of clots and also my medical history means I can't take certain medication due to a much higher blood clot risk.

I spoke to the vaccination line who put me in touch with the clinical team. They agreed that given medical and family history I shouldn't have the AZ vaccine. I have to wait for my letter and call the reschedule/vaccination line again to schedule to a vaccination centre which has the other vaccines available and then explain again on the day. I don't know if this is just a Scottish solution though. I would have thought picking a bigger vaccination centre or hospital would have the others potentially available and you can explain medical history.

TuvoknotSpock · 14/04/2021 12:43

So it basicslly says you need to balance the risk of covid to yourself. Fwiw my Dad (who I think is the parent who passed me this gene) has had one and will have the other AZ dose as he is an older male so it is better for him to risk a clot vs covid whereas for me it's the opposite.

I would like to see some data on age and sex of people who developed clots from covid also.

A lot of people will say just get it as they are not at risk and it doesn't matter to them but imo if you are at risk it's better to wait, just as if I had a severe allergy I would not be taking Pfizer ;)

I'm more at risk of getting blood clots so WTF do I do re: AZ?
DandelionSprout · 14/04/2021 13:28

Looks like they recommend people with thrombophilia to receive the vaccine.

I'm more at risk of getting blood clots so WTF do I do re: AZ?
Azuretwist · 14/04/2021 14:10

I have that @StitchInLime and had clexane in all 3 pregnancies. But it was only picked up due to infertility tests. I have had AZ nd told ok to have second dose. I also have Factor V Leiden and have ha da previous TIA.

conkersarebonkers · 14/04/2021 14:10

This was updated recently (5 days ago): www.gov.uk/government/publications/covid-19-vaccination-blood-clotting-information-for-healthcare-professionals/information-for-healthcare-professionals-on-blood-clotting-following-covid-19-vaccination

"Individuals over 30 years of age with past clotting episodes and those diagnosed with thrombophilia, whether or not they are on long term anti-coagulation, remain at risk of COVID-19 disease and should be vaccinated with any of the available vaccines (provided they are not otherwise contra-indicated)."

Imfedupwithallofthis · 14/04/2021 14:18

DandelionSprout, was just coming here to say that.

Initial advice, released 7 Apr 21 was as given in the link above by WiseupJanetWeiss. This has now changed to the advice above, released 12 Apr 21.

Those with thrombophilia (including antiphospolipid syndrome, if no previous problems have been shown), can be given AZ vaccine, unless specifically contraindicated.

I have followed this because I have inherited thrombophilia, and am due my 2nd AZ vaccine this week.

WiseUpJanetWeiss · 14/04/2021 15:19

The link I posted is the current information for healthcare professionals for the vaccine - it’s the precursor to the Summary of Product Characteristics which will be published when the vaccine is fully licensed. It is accurate and current.

The screenshot posted is the JCVI’s interpretation of the risks and advice to the vaccination programme. This does not supersede the Information for HCPs. They are two separate things.

Imfedupwithallofthis · 14/04/2021 16:34

www.gov.uk/government/news/mhra-issues-new-advice-concluding-a-possible-link-between-covid-19-vaccine-astrazeneca-and-extremely-rare-unlikely-to-occur-blood-clots

7 Apr 2021
MHRA issues new advice, concluding a possible link between COVID-19 Vaccine AstraZeneca and extremely rare, unlikely to occur blood clots

As a precaution, administration of COVID-19 Vaccine AstraZeneca in people of any age who are at higher risk of blood clots because of their medical condition should be considered only if benefits from the protection from COVID-19 infection outweighs potential risks.

www.gov.uk/government/publications/covid-19-vaccination-blood-clotting-information-for-healthcare-professionals/information-for-healthcare-professionals-on-blood-clotting-following-covid-19-vaccination

9 Apr 2021
Information for healthcare professionals on blood clotting following COVID-19 vaccination

Individuals over 30 years of age with past clotting episodes and those diagnosed with thrombophilia, whether or not they are on long term anti-coagulation, remain at risk of COVID-19 disease and should be vaccinated with any of the available vaccines (provided they are not otherwise contra-indicated).

In current situation (would alter if cases began rising rapidly), under 30s are going to be offered an alternative to AZ, as the benefits of vaccination do not outweigh the risks.
In those over 30, according to statistics, the benefit of AZ or any other vaccine does outweigh the risks.

I agree that the advice from MHRA on 7 April has not been superceded by the advice on 9 April, as the benefits to those over 30, with or without thrombophilia, outweigh the risks.

GrumpyHoonMain · 14/04/2021 16:36

@StitchInLime

Hi everyone. So during some fertility tests I discovered I have thrombophilia (specifically something called PAI-1 gene polymorphism). This makes me more susceptible to getting blood clots. It meant I had to have regular clexane injections to ensure I had a healthy pregnancy.

Naturally, all this talk of blood clots has me scrutinising the pros and cons of having the AZ jab if offered (am in my 40s so be offered it soonish, I guess?). I spoke to my GP who said the guidance is pretty basic beyond the 'people under 30s' and I can't 'opt' to have another jab (like the Pfizer one) as as far as he can see from the little info he has, I am not in a risk group. He admitted there was no mention of those with thrombophilia.

Is anyone else in a similar situation and / or can offer any guidance / thoughts? I mean, WWYD in my situation? I don't have any health issues btw (as far as I know).

I have the same thing, and was told to have the vaccine by my fertility clinic because there is a link with PA-I and severe preclampsia and so therefore my consultant believes people with PAI are probably more likely to get die from or get / severe / long covid. I have 4G/4G but 4G/5G also carried a risk.
WiseUpJanetWeiss · 14/04/2021 16:54

I agree that the advice from MHRA on 7 April has not been superceded by the advice on 9 April, as the benefits to those over 30, with or without thrombophilia, outweigh the risks.

Totally agree with this, sorry. Pressed post instead of review and meant to clarify in another post but got distracted by work Grin Hmm. The SPC is the definitive document that details cautions etc. but the guidance you posted is a centralised elaboration on that caution in the context of risks from the pandemic IYSWIM.

I’d take this vaccine no problem.

GrumpyHoonMain · 14/04/2021 16:59

I think it should be pointed out that the NHS doesn’t consider PAI 4G4G as a thrombophila but yes to the 4G5G is, and many hematology experts don’t know enough about the homogenous variant to have an opinion. So fertility clinics and areas within the NHS that examine recurrent miscarriages are best places to get the info.

bookworm1632 · 14/04/2021 17:02

The mechanism by which the vaccine causes clotting is wholly different so you likely face the same risk with the vaccine as anyone else. Nor would the vaccination have any impact on your existing risk.

bookworm1632 · 14/04/2021 17:03

The mechanism by which the vaccine causes clotting

Sorry, meant to say the mechanism BELIEVED to cause the clotting - a fair amount of evidence supporting it being an AutoImmune response though

101spacehoppers · 14/04/2021 20:24

I have an increased risk of clots (GP put me in group 6) and had AZ a few weeks before the clot panic. GP felt that c19 was a significant clotting risk itself so better to have it. I also have an autoimmune condition (although currently in remission).

I'm perfectly happy to have the second dose.

LemonRoses · 14/04/2021 20:58

Do an econsult. I had already had one stab with O-AZ but was moved to start again with Pfizer and advised against second O-AZ.

seanceinterrupted · 15/04/2021 10:35

No one has had a clotting issue on their second AZ jab.... so if you've had the first, then shouldn't be any issue with the 2nd

ittakes2 · 15/04/2021 19:28

I also found out I have a single blood clotting gene while preparing for IVF and had to thin my blood during pregnancy and for six weeks afterwards. The doctor put me in group 6 because long covid was known to cause clots and therefore she considered I had a higher risk. I also have ceoliacs which is an autoimmune condition. I had AZ before the info about the clots came out. I have just spoken to a GP about my second AZ. I asked about thinning my blood with aspirin before my second dose and he said absolutely for me not to do this because that increases the risk of me having low blood platlets. I also had quite a reaction to AZ so he is going to talk to the other GPs about whether I have another AZ or have a Pfizer. It is so confusing as since I have autoimmune issues and the clots are linked to autoimmune issues - I am partly wondering whether my body will react less to just getting another AZ and that might be better for me anyway rather than my body having two different vaccines in my body. My 2nd jab is in May so time is not on my side in terms of the medical profession gathering data to help me make a decision!