Another antigoagulant question

[Jafib53]

Hello. A year ago I had painless thyroiditis which sent me into Afib and I remained in Afib constantly for 5 months for which I was on bisoprolol and an anticoagulant. I was then put on an anti arrhythmia meds at the time the thyroid cleared up and was soon back in NSR. That was last March. Since then I have come off the bisoprolol and the anti-arrythmics and have so far remained in NSR. I have had ECGs every two months and all have been okay. My next appointment with my doctor is at the end of the month and I think we may discuss coming off the anticoagulant. I think because the thyroid was my trigger and it has now cleared up, it could be possible that it is now not necessary. I am 53 and have no other issues as afar as I know.

However, reading this board has made me nervous about possibly stopping. I get the occasional ectopic which worries me and the fact I had Afib makes me think even without the thyroid issue, it could come back. But I suppose Afib could hit anyone at any time. I don't have any major problems with the anticoagulant apart from the fact I can be prone to nosebleeds in the winter months. That said, I have had a few and they all stopped quite quickly. The bleeding risk is a bit worrying as I am tall and clumsy and live in Japan where doors are low so can bang my head a bit!

So, at my age, is there any downside to continuing with the anti-coagulants? And on the flip side, at my age and in my situation, would you think there is a great risk in stopping them? I know we are not doctors here, but just curious. At present I feel more inclined to maybe keep taking them for a bit longer, at least.

[babssugar]

Hi Jafib53

Personally I would keep on taking anticoagulants better to be safe and not risk your health .But get in touch with your doctor.hope all goes well with you

Hugs barb 😃

[mjames1]

"I think (my doctor) may discuss coming off the anticoagulant...However, reading this board has made me nervous about possibly stopping (anticoagulants)...

is there any downside to continuing with the anti-coagulants"

--------

Please do not let anything you read here make you nervous or scared about not taking anticoagulants/thinners. This is not what support group should be all about.

The thinner decision should be a shared decision between you and a trusted doctor, based on your own unique risk factors and medical history. It should not be based on stroke anecdotals, etc. often mentioned here, any more than it should be based on anecdotals of major bleeds.

Either, as well meaning as they may be, only serves to scare people and turn what should be a medical decision into an emotional one.

And of course they're downsides to anticoagulants if you don't need them, just like they're downsides to not taking anticoagulants if you need them.

Good luck whatever you and your doctor decide.

Jim

[Jafib53 in reply to mjames1]

Thank you. I will of course discuss it with the doctor, but you are right in that sometimes the most well-intentioned posts can induce fear. It's hard to know what your own personal risk is with whatever course of action is available.

[secondtry in reply to Jafib53]

I totally agree with Jim's approach; neither way is a guarantee of success but following his suggestion at least you /your loved ones can't reproach your decision.

[CDreamer in reply to Jafib53]

I also agree with Jim’s sound advice, also secondtry’s comment there is no foresight of what is right for you so we must make the decision based upon the known, knowns and trust our own and our doctor’s experience and judgement. Unfortunately fear is contagious and it can be very easy to be swayed by other people’s fear - which is why it is important to be well informed.

[BenHall1]

Hi,

Just a different approach to your post ......... two things, you mention your chronological age as being 53. What is your heart age ...... the two can be different things. To the best of my knowledge only an Echo can give your Consultant an idea of your heart age.

Next, and I know I'll be corrected if I am wrong BUT an AF origin stroke can often be quite severe even leading to death. I have read that the causes of different types of strokes can all be different BUT From AF it is often fatal.

On this and similar forums we read of all sorts of conjecture as to causes of this, causes of that and so on ..... something often overlooked is genetics. To help you in your decision making ( and I believe it is your decision and your consultant should work with you and respect it ) it maybe of interest to examine your family history ( on both sides ) to search out incidents of heart issues and strokes. If this incidence is high, the mortality rate is high then its a no brainer ..... but its still your decision.

I was diagnosed with paroxysmal AF at 65 thrown into the mix was that I can be at times asymptomatic ! I'm now 79 been on Warfarin all the time ( since 2010 ) and will be on it for life. My AF is now non existent BUT THERE IS NO WAY WOULD I STOP WARFARIN.

Back to genetics - my paternal grandfather died from a series of strokes ( 6 in fact ) of different types and shapes and sizes. He was 82 in 1964. I often wonder if he had undiagnosed events of the AF family. I got diagnosed with AF at 65. My 2nd cousin got diagnosed with AF at 72. This 2nd cousin's father was my grandfathers brother. My daughter was diagnosed with AF during her two pregnancies ages late 20's early 30's. Genetics !!

Apologies for labouring this point with a long post BUT if I were you I would be taking the anticoagulant.

Good wishes in your decision making.

John

[Jafib53 in reply to BenHall1]

Thank you. I have no idea about my heart age but when I had an echo when the AF occurred, the doctor said my heart looked 'very healthy'. My grandmother had two small strokes, neither which caused lasting damage and lived to 93. No idea what caused them but I suppose it is quite possible she had AF. No history of heart disease in family as far as I know, but my elderly father (83) was recently told he has AF which was said mostly as an aside during his treatment for cancer. He is asymptomatic and so who knows how long he has had it! As I mentioned, I am leaning towards continuing with the anticoagulants for now anyway. Maybe if I get to a few years and still no recurrence of AF I will reconsider but if I come off them now I suspect I will be constantly nervously checking my pulse in fear. I do that enough already! But will seek doctor's advice.

[BenHall1 in reply to Jafib53]

Well that is a very encouraging outlook for your future and you certainly seem to be very much on top of the challenges. I do wish you well.

John

[Jafib53 in reply to BenHall1]

Thank you very much.

[waveylines]

I honest think this is a discussion to be had with your heart specialist and also the Endocrinologist. Your position is not the same as many on here but does need serious consideration. Your Endocrinologist should be able to explain the risk of reoccurance. This will be an important factor in deciding whether you will need ongoing anti coag or not. I would suggest that you ensure both speciskists can contact each other to discuss.You don't say whether the anti coag has caused you any symptoms. This is something else to consider.

Though it's always great to hear from others. The problem you have is you really need to hear from others in the same position as you. Many won't be. So in your shoes I would be listening to your two specialists and if still unsure consider a second opinion.

I have Hypothyroidism as well as Afib but mine has no chance of causing a spike in thyroid hormones unless I take an excess of medication! So I can't help much either.

Take care.

[Jafib53 in reply to waveylines]

Thank you. Yes, my thyroid condition was a bit odd in that painless thyroiditis is usually caused by an infection or something like that and I didn't have any that I knew of. But it caused hyperthyroidism and so the fast heart rate and then Afib. But my thyroid issue was self resolving and the endocrinologist seemed to think it probably wouldn't recur. I don't have any problem with the anticoagulant. My endocrinologist and cardiologist were in touch but I don't think they spoke deeply as my cardiologist had me booked in for an ablation until I told him the details of my thyroid issue and that I no longer needed to be treated for it. I asked if that might mean the ablation isn't necessary and he agreed that it might not be and canceled it. I think up until that point he was under the impression I had Graves or one of the thyroid conditions that would cause many flare-ups.

Thank you for your reply. Very sensible advice.

[waveylines in reply to Jafib53]

Glad your Endo seems to think it won't reoccur again. That's great news. Will they be checking your thyroid hormones regularly for a period of time because this would give more of an early warning which you might find reassuring? Once their monitoring stops if you still feel u want to check you can order your own thyroid blood test privately (TSH Ft4 & Ft3) not that expensive but you might find reassuring. Wishing you ongoing good health.

[Hidden]

Hello Jafib, it’s great to hear that your thyroid treatment has had such a great impact on your AF. I don’t know what the general health care arrangements are in Japan but I assume they use the CHADsVASC method of assessing the need for anticoagulants and the HASBLED method for assessing your bleed risk. From what you have told us, at your age the chances are that your CHADs score may well be 0 and all being well, it could stay that way for some while. Obviously this is something to discuss with your Doctor and hopefully, he will suggest stopping them because it’s likely that your bleeding risk outweighs the risk of stroke.

Whilst you are right, AF may return, even if it does, you will still be zero provided your condition remains the same and you are not old like me. Nobody should take medication when it’s unnecessary so be guided by your Doctor and please let us know what is recommended……

ps Waveylines makes a very valid point, discuss it with your Endo as very often they have a good working relationship with EP’s/Cardiologist’s

[Jafib53 in reply to Hidden]

Thank you. I have a good idea now of what I need to ask my doctors.

[Sixtyslidogirl]

medics best places to answer and the old Chads-vasc score. If you look at the nice guidance, you can also see the studies which underpin the guidance which can bring some reality to your thoughts. We humans aren’t great at estimating risk. I also looked at the risk of stroke from ectopics and found a review paper that said 5 per hour was the risk boundary. Here is another one which says something similar

ahajournals.org/doi/10.1161....

[Jafib53 in reply to Sixtyslidogirl]

Thanks. I think I maybe have a few ectopics a day. I'm not always sure if what I feel is one or not but there have been a few times where I definitely have a 'missed beat' which I think is usually an ectopic.

[mjames1 in reply to Jafib53]

That's normal. Almost everyone has a few ectopics daily. As to the paper cited, not clear at all if the ectopics or a fib were the cause of the cited stoke stats. Nor was there any inference in the psper ( or anywhere that I know of) that ectopic activity alone required anticoagulation.

Jim