Hi, my first post after joining and it’s a long one, sorry! I’m 46 and had an 8 hour emergency surgery having no idea that I had a heart problem. They found I had a bicuspid valve, dilated aortic root and ascending aorta (5.1cm). I had a graft of the ascending aorta and mechanical aortic valve replacement. Following surgery on 1 March I also ended up suffering a stroke 10 days later as a result. I’ve been on warfarin since (Except having to have IV heparin for a while). I had a few complications following the surgery and stayed in hospital for three weeks, not my most pleasant three weeks at that!
I have an INR range of between 2.5 & 3 like most people but I cannot stabilise within therapeutic range.
I haven't drunk alcohol, I don’t eat processed food, I’ve eaten the best balanced diet I ever have done and know about the impact vit k can have on levels so try to watch the amount of leafy greens etc without being “strict” (emphasis on balanced!)
Without going on and on my worry is that if I cannot stabilise the risk of stroke is higher. Having already had one after surgery that’s left me with hemaniopia and destroying my confidence and independence, and then finding out recently that the valve they replaced is leaking and more treatment is likely to be necessary I don’t want another stroke. I am really concerned that I’m doing something wrong.
Does anyone have any tips on what might be affecting my levels? (I’m 9 weeks post op, am I having too high a level of expectation!) sorry to go on and on, I’m just worried.
Sorry this is so long, thank you for reading!
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PalSal73
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I have taken warfarin for 20 years plus, tho not for a heart condition, that came later!I had my first stroke when I was 36, my son was less than 6 months old.
Consistency is the key and you seem to be doing that better than I do!
The half life of Warfarin is about three days, I’m sure some warfarin clinics test to often, I stress that is my personal opinion only. Also how and when your INR is checked can effect the result so try and get tested at the same time of day.
I can only imagine what you are going through but keep with it you will get there. Your op wasn’t that long ago and it can take time for warfarin levels to stabilise.
Might also be worth thinking about getting blood tests for T3 and T4 these are thyroid tests, and VitD and B12 these aren’t always done routinely.
If you need anything else feel free to PM me at any time.
Thank you for your reply, it makes an enormous amount of sense so will take on board what you’ve said. Not done this before so very much led by the healthcare experts that “sometimes” forget little details that may help as they are so busy.
It must have been very difficult for you with such a little one to look after. I hope you’ve been able to make a good recovery, it’s so indiscriminate - I was reading today that the athlete Michael Jordan had a stroke last year, far more severe than mine, and has recovered well. Must be one of the fittest men out there and it has happened to him.
I’m sure I’m not doing something right but try to limit the extras - not always easy when the family has a nice glass of wine with dinner and ice cream for pudding and I’ve got my bottle of water and apple!!!
Your point about the thyroid test really makes sense too as I was diagnosed with overactive thyroid (still don’t know how I have that as I need to lose weight and wasn’t the classic overactive thyroid patient!) at the same time as discovering my heart problems. Trouble is with the surgery I needed its sort of on the back burner until next week (thyroid and losing weight though the food I’m not eating now helps!) when I see the endocrinologist at the hospital! I will question this though as it might help if the meds I’m on are conflicting with each other.
I need to just be a bit more patient with it and as consistent as possible! Thank you so much for replying, it’s helped enormously, I may well PM in the future as you’ve kindly offered. 🙂
Hi, you’ve been through an awful lot and your body is having to do a heck of a lot of mending and adjusting. My husband is on Warfarin having had an AVR last year. He hasn’t had many issues with his INR but balancing the dose is a combination of science and art. It can be challenging when other drugs you’ve had recently are still in your system and gradually reducing.
The AF forum is really helpful in respect of Warfarin and there an Anticoagulation forum too which can be worth looking at. The AF people have a website with a couple of info sheets about foods and drugs which are useful.
Sounds like you have had a really hard time of it. I too am on warfarin like a lot of members of the forum. I have now been taking warfarin for nearly two years. I remember that feeling that my INR would never settle down but it did eventually. It took several months but I got there.I have been on the same dose for several months now. I have to add that I eat mainly home cooked food , I am careful about the amount of green veg I eat but do take some. I also drink red wine but keep strictly to the limit. I go for moderation and being sensible .
The testing is rigorous to start with but hopefully will settle down. To answer your question directly, nine weeks is quite early. Remember that at nine weeks you are still in a period of physical and psychological improvement, your appetite will hopefully be improving and your physical activity increasing.
Another thing for you think about, some people on this forum including myself self test. You need to check out if your practice supports self testing, mine does. It means having to buy your own tester (£300) , my practice provides the rest. Self testing means I do a simple finger test when asked and phone in the results and am advised on any changes I need to make and when I require to retest.
All the best to you, sounds like you are doing amazingly well.
I’m stubborn and independent sometimes too much so, unfortunately my son is also stubborn so you can imagine some of the discussions we have!
Another thought there is a mathematical formula that works out how long you have been in hosp which is after all an institution and how long it takes to ‘normalise’ back home. For a three week stay that roughly equates to 3.5 months. Hated maths at school but love statistics sad I know, and can be read in many different ways. Food for thought, shows your in very early days.
A glass or two of wine won’t hurt. Try and relax, sending hugs
I'm probably the worse person to give advice on warfarin, I've been on it for 7 years, and I can't really say I've changed my habits that much.
I drink, up until recently I drank daily, a couple of glasses of wine every evening, but as I'm trying to lose some weight I've cut out week day drinking, and only drink Friday and Saturday.
I eat salads in the summer, and hardly any veg all winter, I do take daily exercise, INR is checked every 5-6 weeks, and it's generally always in range, only on the odd occasion it goes a bit high, but never above 2.7.
So for me I just forget about it, and live my life within my own limits, everything I do I am consistent with it, and that for warfarin is the key x
My advice is to do what you want, eat what you want, but do it consistently.
I take 2mg of warfarin 3 days a week and 2.5mg 4 days a week, I always take it just before bedtime, and even that varies daily.
The whole point is we are all different, and I think we need to find what works for us x
Sounds like you have it licked! Good to hear that it does settle. I’m sure I will in time too!
You make a good point, we’re all different I guess and will react differently. Thank you for replying though. All the replies have been so helpful in reassuring me. 😊
Don't obsess about these numbers, they vary hour to hour. As long as you keep taking your warfarin and stay roughly between 2 and 3 the odd variation isn't really significant.
I've been on warfarin for years and have got used to the odd peaks and troughs.
I've been down to 1,8 and up to 3,5, spent weeks having my dosage adjusted and ended up on the same dosage I started with, your body is not a metronome, variations are quite normal.
There are alternatives, but for some conditions warfarin is th best, have you been offered apixaban or similar meds?
Great advice there but Palsal has you has mechanical valve replacement you can't have apixiban or any of the similar New anticoagulants as they are not effective on the valve therefore it has to be warfarin.
I’ve not hit target since be released (not discharged, felt more like a prison experience 🤣!!’n) and it has dropped to 1.6 on Tuesday. Going to the nurse again on Friday for another check.
Like Mary says, with a mechanical valve I can’t switch to anything else. 😞 just need to be less keen to get it all sorted sooner rather than when my body is ready! Thank you though. Still helpful.
It often takes months to reach a stable INR, I think you must persevere and I'm sure you will be ok soon.
The dosage is normally only increased slowly as being too high can cause hemorrhaging which I'm sure you know can be very serious according to where it happens.
My mother was on warfarin and her consultant told her to drink red wine as long as she drank it every day and that it was a good quality wine! It took time for her levels to stabilise but once they did she was fine. The only time they began to go awry was when she decided to lose weight and switched from vegetables to salad. Judes is right - consistency is the key.
Ah man! Who’s the consultant!! I did smile that in my booklet it does say ‘if’ you drink do it consistently! I took that as drinking “all” the time!!
Poor attempt at a joke aside I’ve stopped drinking, adding salt, having sugary stuff, and trying to be healthy without being OTT. Perhaps that’s why it’s not working!
I’ll get there, just need to relax a bit. 🙂. Thank you for your reply.
Wow. You have been through the works. Usually post-op you will have a local system for measuring your INR and managing your dosage. Many people self dose and/or self test, though the medical profession has uneasy feelings about that. For some it works amicably, for some the patient has to take charge and stand firm. I have been self dosing for over 25 years. Here are a few facts.
1/ The minimum you need for protection is 2.0
2/ There is a Margin of Error (MoE), even in venous testing, which means you probably need to start at 2.5. The existence of an MoE is not widely acknowledged, so we end up with too much reliance on the INR. The MoE could be as high as 0.5. For instance, Favaloro as recently as 2018 writes that "evidence continues to show that variability in INR values between laboratories remain[s] unacceptably high" [Mathematical rounding as a post-analytical issue in pathology reporting: generation of bias in INR resulting. ncbi.nlm.nih.gov/pubmed/297...]
3/ You do not need to be concerned until you get a result of 5.0 or higher.
4/ Meier compared narrow and wider target ranges and found that tight control led to more swings 2007[A comparison of anticoagulation results of patients managed with narrow vs. standard international normalized ratio target values ncbi.nlm.nih.gov/pubmed/174...]
5/ I cannot find much serious published study of the natural variation of INR within patients. My own published data is that a variation of >2 is normal. One example is a jump from 2.4 to 4.8 which antocorrected without changing the dosage. You will find more advice in this article for how to stay stable. [Lowe I. 2017. Warfarin self-dosing, a case study on long term self-management of anticoagulation. Journal of Observation Pain Medicine Vol 6 pp 31-40. joopm.com
So, I would argue that 2.5 to 4.5 is a comfortable range where intervention should be minimal. Relax, eat what you want. Let your gut bacteria keep you stable.
Ooo, thanks for the links to papers and information. I will have a good look at them later. I find it really interesting getting academic information in this too. My small attempt at trying to know what I’m talking about ‘sometimes’!
My range is 2.5 to 3 and I’ve only been in therapeutic levels for 23% of time since surgery, hence my concern in respect of clots. I’m now up to 10.5mg of warfarin. They’ve also prescribed 75mg of aspirin so hopefully there will be extra protection there. I have a feeling the meds I’m taking for overactive thyroid ‘may’ be affecting the levels too. Going to look into that a bit more as well.
Thank you all for the advice, links and suggestions. Been really helpful reading your replies. Far more helpful than overthinking it in my head and panicking!
I had 2 valves repaired on 7th March was discharged on 15th went for checkup with a nurse practitioner on 26th and was found to be in Atrial fibrillation was prescribed Bidoprolol and referred to my local hospital Warfarin clinic. My levels have been all over the place but have settled this week at 2.7 si I've to stay on the same dosages for the next 2 weeks. It's complicated but I take it at 5pm every day. It will take time to settle I think. I've not really been too careful about what I'm eating or drinking. I hope you get things sorted soon I wouldn't buy a monitor go to the clinic. I think I would be checking too often. My doctor has advised me to get a BP monitor today. I fainted yesterday at home fortunately my husband was standing right next to me and stopped me falling! Dr says NHS approve of this now so I should check BP when I get a dizzy spell. I'm not sure if I will get one.
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