Pulmonary embolisms- lack of aftercare. I’m scared. Any drs about?

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Just over two weeks ago, I was taken to A&E with breathing difficulties with low 02 sats. I had X-ray and ct scan with contrast and bilateral extensive pulmonary embolisms were diagnosed. Admitted onto the ambulatory/ A&E overflow ward. Given high dose blood thinner jab, then another in the evening and again the next morning then sent home with tablets. Told I would get a phone call in a couple of weeks and that was it. Got phone call, he couldn’t have been less interested if he tried. Talked over me, blamed hrt patch which is wrong as the transdermal patches do not increase risk ( I had a private menopause specialist appointment last week to discuss this, so expert knowledge). He wouldn’t listen and basically said well if you are go7ng to take hrt then you have to stay on 20mg rivaroxaban permanently and wouldn’t explain why. I asked if I would be followed up on but he said no and that I wasn’t actually under any consultant and he was a dr from ambulatory ward. I don’t feel reassured and I was trying to tell him how my leg that hadn’t previously shown any signs of blood clots now is hurting and pinching and feels very much like my other leg that had the dvt that went to my lungs but he just talked over me and he said it must be something else. Thati can’t have more clots on my 15mg twice a day. Is that true because this leg really hurts and feels like the other one did. Any advice? Thanks.

I’m on rivaroxaban 15mg twice a day.

There's nothing more for them to do. Take the medication as prescribed and see your GP soon so you can discuss how long you're to take the anticoag for. Medically, that's it. You could discuss risk factors with GP in case there are any lifestyle changes you want to/can make.

This does suggest you should get a follow up appt after a few months but the treatment you’re on does sound appropriate. Them saying you have health anxiety is absolutely appalling and I would complain, including saying you think your gender was a factor and that they are ill informed about HRT. Put in a proper complaint. Do see your GP as well https://www.brit-thoracic.org.uk/document-library/quality-standards/pulmonary-embolism/appendix-4/

can I get a new blot clot while on the blood thinners?

https://www.nice.org.uk/guidance/ng158/chapter/Recommendations#outpatient-treatment-for-low-risk-pe

There are also NICE guidelines on this.

Look up Wells Score for DVT. It considers your symptoms and calculates your risk.

Thank you.

In my trust, once a PE or DVT is diagnosed and a patient is discharged, follow up is via their own gp. Other trusts have an out patient clinic for follow up after approx 3 months, so it will depend on local procedures for where you live. Blood thinning tablets , like the ones you have been given are the typical treatment for PE/DVT. The exception to this would have been if you were very unstable when you went to hospital or were unable to take blood thinning medication for any reason. The wells score for DVT isn’t really useful for you at this stage. It is a risk assessment tool used to calculate the likelihood of you having a DVT based on symptoms and certain aspects of your medical history. You have already been diagnosed with a PE and DVT. It might be worth making an appointment with your own gp to talks things over, which may help you feel reassured.

Thanks for that information, so it’s normal then. My leg is fine today so I have a gp appointment booked for next week as it’s not urgent now.

The dr told me I needed to stay on 20 mg rivaroxaban for life rather than the 10mg because of me going back to hrt. Is there risks of such a high dose for life. What happens if I’m in an accident?

Thrombosis UK are brilliant and very supportive

Don't forget sugar makes blood thicker so I'd stay off that and drink lots of water.

Another clot should show as pain and heat in the leg.

I'm not medical but do have part Factor Five Leiden so that's just a few tips I've picked up.

Worrying isn't it.

I shall go look for support from them. Thanks. I’m constantly worried now.

I was thinking of going keto to try and lose weight so hopefully that with help. Even though I’ve got lots of clots from my leg it wasn’t hot once. It was like I had pulled my hamstring tight pinching pain.

I’m terrified of my period due in a few days. Carrie won’t have anything on me. I’m a heavy flow girl already.

Don't be terrified, be prepared! I had very heavy periods (before I stopped having them) and I'm sure that was due to the a Rivaroxaban. Make sure you're stocked up with whichever period products you use.

After a while my GP gave me 10mg to take when my period started, but see how it goes. I doubt you'd want to be on a lower dose yet and it might not be that bad.

20mg is a standard dose of Rivaroxaban. You should get a card in each packet to carry with you in case you have an accident. It's important that people know obviously, but try not to worry about everything. A lot of these things can be managed by thinking ahead.

I totally understand because I have problems with anxiety and my PEs / DVTs sent the anxiety sky high at times.

I must be a similar age (I'm 50) and understand the issue with being anxious about clots if you've already had experience with it before. But if NHS provision was as it should be, all it would take to allay the anxiety is someone to listen to you about WHY you're worried, to examine you, and to talk through things properly about options, or to provide reassurance. I honestly think the way people are treated by many NHS professionals just makes anxiety so much worse, because you don't feel like anyone has a grasp on the situation. This is what happens when the NHS is reduced to fire-fighting. Fire-fighting is exactly what happened to you - they confirmed your PE, they gave you the blood thinners and there you go - their patient didn't die of what they went to A&E for. It's a win for them, and about all we can expect for some things at the moment.

It used to be that your GP would be the person you could go to to talk through things like your situation, OP. But I feel that now it's a battle to get a GP appt, or you get someone who doens't know you.

To be honest the evidence around transcutaneous HRT and DVT / PE is not that robust. If I had a PE I would stop taking HRT. If you look at the manufacturers info leaflet for evorel and the NHS website they advise not taking after a PE…

Yes, I looked into this when I wanted to start on HRT and thought it was odd that the leaflets said that, when I'd read that transdermal doesn't cause clots. It's too ambiguous for me so for now i'm struggling through, HRT-less.

I had a private menopause specialist appointment who said there was very little risk, wouldn’t say no risk as she said there wasn’t much data on use after PE, nothing negative but just not much at all, but felt my other factors ie weight were much greater than hrt. She thought lifelong blood thinners for weight (going to try dieting again)was reasonable at 10mg. But the dr said hrt caused it and that was it. He really admitted he didn’t know much about menopause when I said what my specialist said. But still blamed hrt. No data to back it up.

I always feel the leaflets always over egg it to protect themselves. If you read the paracetamol leaflet you probably wouldn’t take it so readily. My specialist I believe more than the leaflets.

Rivaroxban 10 mg is not a treatment for DVT PE long term - as others have said 20 is standard dose - your meno specialist is wrong . It's not based on weight . There is data to back up hormone risk for VTE - eg pregnancy , OCP, HRT oral preparations and tiny risk in transdermal .

If you're worried about risk factors - go and have a proper chat with GP. You could ask for ref to haematologist in absence of any outstanding RF but transdermal HRT carries a very tiny risk - that's why your specialist couldn't say no risk . ( I worry too as I'm on it )
Have you got any other risk factors ? Have you had reduced mobility ? Family history? The latest research shows that even sitting still for 90 mins is a risk . You mentioned weight - are you very heavy ?
At my trust , we advise Riva longer term if women want to stay on HRT , so having it whilst you are on HRT ... the hospital otherwise should have given some guidance on how long you will be on blood thinner .
so that's good advice . I think I remember your thread from a couple of weeks ago ? The main thing is that you're not having any further PE symptoms.
Did you have a look at Thrombosis UK ?
Blood thinners do have long term consequences ie risk of bleeding , but at the moment if you're not on them you are at risk of clotting again so take the correct dose . I hope you start to feel better soon - it's not an easy ride

Was also going to mention Dabigatran comes out better for bleeding with periods over Rivaroxaban in trials .

Thank you for that. Very helpful. Yes I’m a size 24 unfortunately. Reduced mobility in that I sit a lot at work. Peri menopause has made me so tired that I just sit about now after work and weekends. I don’t sleep much. Weight has just gone on. I just looked at my specialist report and it’s my mistake not hers. I read it as 10mg but it does actually say 20mg. I’m so exhausted I must have read it wrong. Last night I got 33m deep sleep according to the app. I re read the whole report again and I didn’t even remember a part of it! I’m my own worst enemy with lifestyle. I need to change.