Coming off Bisoprolol - Worried: I had a... - AF Association

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Coming off Bisoprolol - Worried

FancyPants54 profile image

I had a cardioversion in February which was largely successful, I'm back in NSR and haven't had any Afib that I have noticed. But I have had ectopics and it left me with higher HR. It's running in the 80's and 90's. It used to be 70's. I was on Bisoprolol 2.5mg and Digoxin before the cardioversion after getting stuck in Afib for 11 months.

After the cardioversion I was told to stop the Digoxin immediately. This week I tried to talk to my GP about the Bisoprolol. I have tingling numb feeling toes, horrible heal pain in the right foot and in bed at night my feet burn and sting and prickle. I often wake early with cramp in the top of my foot which pulls my second and third toes right up in the air. Really painful. I'm also worn out all the time and have no energy or stamina. I am also hypothyroid though and that is an ongoing problem.

I asked to switch to Nebivolol because I've heard people here saying they had less side effects with it. He seemed reluctant but said I could if I wanted. But he suggested I come off the Bisop first and see how I felt with nothing. So that's what I'm doing. This morning I cut my pill in half and thought I'd do that for a couple of weeks. I'm nervous. I don't know why my heart rate is fast. I fear it getting faster. My BP is good/slightly low and will no doubt rise.

What can I expect to happen? 2.5 seems such a low dose, perhaps it's not this at all and I'll just make myself worse coming off it.

34 Replies

Did you test positive for the DI02 gene test? Unless your thyroid levels are optimal your Afib will play up. I have similar issues, have had two Cardioversions. I have tried to wean myself off heart medications but the Afib came back with a vengeance. I take bisoprolol 2.5mg and Flecinide 100 mg and 60 mg T3 only as I have gene defect so T4 does not work. Doing OK but when I try cutting either the Flecinide or Bisoprolol the Afib kicks in. So leaving it alone. Don't want to be anywhere near a hospital at the moment with Covid19. Magnesium is very helpful for Afib assume you're on that too?

Yes, I have just recently tested positive for Dio2 from one parent. I haven’t spoken to anyone about that yet.

Yes just like me, I have read that we would be better on combination thereof T4 & T3. But my NHS Endocrinologist told me I cannot convert T4 or if I could it would be too little. Explains why I had hypothyroidism symptoms for 20 year's on T4 only massive doses up to 250 mg per day under Kings College & still unwell. I decided to go T3 only, they wanted to keep my dose low because of aggrevating the Afib, but I bit the bullet feeling that my body has been starved of this life giving hormone. So gradually increased to 50mg then tried to reduce heart meds. That was a mistake so as I said above sticking to heart meds. I think I have hit a happy medium for now. Heart rate steady at 60 at rest. If you go T3 only your T4 level will drop but as it's only the storage hormone you don't need it if taking T3. This will flush out any reverse T3 in your body. But go slow with your increments. Basically 60 mg a day is the maintenance dose for T3 only, but you need to get there slow and steady. I would not drop your beta blocker until you get to a maintenance dose. It's very difficult to distinguish your symptoms of tiredness when you have two conditions going on. You can now get an NHS prescription for T3 from your Endocrinologist, just take a copy of your gene test. NHS give me Morningside which is better than Tiromel. Problem is I can only get 20 mg tablets on NHS sometimes 5 mg but they are expensive. I take 20 mg at 5 am 4 hours before my heart meds and vitamins. Then 40 mg around lunch. ( I only eat breakfast & evening). On T 3 only your TSH should go down to around 1 or a bit less. Hope this helps.

Thank you. I do know the T3 only process. I have tried it in the past and still didn't get well. I have seen an NHS endo once and he just discharged me as "fine". I pay to see a private one now. I haven't spoken to him since I had the gene test returned. I must arrange that.

This morning I have spoken to my GP about it and made sure he had a copy with all my thyroid results on it, carefully charted. But he's said the gene test means nothing to him and my thyroid results are all in range so they are fine and it's not that. I don't believe him, but I'm not going to get anywhere with him about thyroid, I can tell. My TSH doesn't conform to what you might expect when taking medication and my T4 will rise and fall with dose changes but T3 barely moves. If T4 gets too high, T3 drops. The endo I'm seeing will want to work with combo T3 and T4. I know that. But we were trying some Levo experiments only, then I did the gene test and then the brown stuff hit the fan in the UK.

Have you had an echocardiogram to check the health of your heart?

Yes. It's good. Nothing wrong with it. Just the electrical signalling that's causing the Afib.

BobD profile image
BobDVolunteer

I know you probably don't want to hear this but any heart rate below 100 and above 60 is considered normal and would not be treated. I think maybe your doctor needs to see how you progress without any drug treatement.

FancyPants54 profile image
FancyPants54 in reply to BobD

Yes, he tells me it’s (HR) fine. I want to try to get off the drug because I don’t know what is causing my numb toes, painful feet and bad fatigue, which I didn’t have before the advent of Digoxin and Bisoprolol, (well I did have fatigue). Removing Digoxin didn’t change that at all.

I cut my first tablet in half yesterday and by last night my anxiety level was much worse. And I’ve woken up with it too. I don’t know what to do. I don’t want to go back into Afib. Do you think this is the wrong time to experiment like this? Would I be better trying a different brand of beta blocker instead?

I was positive about trying it, but the anxiety is kicking me in the butt this morning.

PaulDB profile image
PaulDB in reply to FancyPants54

Reading your post your first issue is you are stressed. Maybe some counseling would help. Try to deal with that first.

FancyPants54 profile image
FancyPants54 in reply to PaulDB

Yes I'm stressed. But only last night and this morning. I'm not generally stressed about this, so the anxiety is unusual. And it's wearing off a bit now too.

I would go for a slower weaning. Bisoprolol tolerance seems to be very different for individuals and the reaction to lowering the dose does too. Instead of taking half a pill try taking three quarters and stay on this till you have stabilised. Then go down to 1.25 mg and do the same. If you are still having problems you could ho back to GP and ask again for a switch to Nebivolol. Your foot problems sound like a combination of peripheral neuropathy and plantar fascitis. They may not necessarily be a side effect of the Bisoprolol.

Spoken to the GP. My cardiology follow-up is next week so he now says he won't switch my medications, I have to see cardiology first. I can continue with the cutting down of the pill though. I'm not sure where the anxiety is coming from. It's wearing off now. I have taken my half of a pill for the day, but your suggestion is a good one if I have the same problems tonight and tomorrow morning.

Yes I think you are right about what the problems are with my feet, but I have to find out what's causing it. And it is a side effect on the PIL for Bisoprolol. GP says it's not likely. But it's there and I never had it before. But I also didn't have it right from the start. I thought I had no symptoms from the rate control drugs at the start.

You haven't by any chance taken a fluoroquinolone antibiotic in the last couple of years ? Both plantar fascitis and peripheral neuropathy can be late onset side effects of this. Dropping beta blockers often results in anxiety. I am decreasing my Nebivolol dose at the moment and am suffering a lot from low blood sugar symptoms - beta blockers can tamp down these so a decrease makes them more obvious. I do not get anxiety though I have suffered with it in the past. I think the magnesium supplement I take helps a lot with this.

No, I've never had that.

If this doesn't work I was hoping to swap to Nebivolol as I have heard people saying the side effects are less. Why are you coming off them?

I'm OK blood sugar wise. I'm hoping tomorrow morning will be less eventful. Now I know I'm back in Afib again, I'm not so sure coming off the beta blocker is going to be such a good idea. But I'm going to hold it here until I speak to the cardiologist.

Nebivolol is better for me than Bisoprolol. I just don't want to take a drug every day for afib which manifests fairly infrequently. I have had 7 episodes in five years. I would rather take a PIP. It's bad enough having to take the Apixaban . I came off Bisoprolol with no problems after my first attack of afib but I was only on it for 6 months. This time I have been on first Bisoprolol then Nebivolol since April 2016. I went into afib again in hospital after major bowel surgery. It is harder coming off this time.

There cramp maybe because of low Magnesium. I take one dose of magnesium a day and my cramp has disappeared.

I do that already.

Difficult to know what to do. I was alright on Bisopralol until i got the really bad cramps. Magnesium sorted them but now all the GP can suggest is doubling up the bisopralol....

Hi I am reducing from 2,5mgs Bisoprolol very slowly as the withdrawal effects for me are horrendous. I am having to stop it because I had numb feet and very low blood pressure. You may be lucky and not have withdrawal but if you find you do then I would withdraw very slowly over a longer period of time. I will not be free of this drug until December this year and it will have taken me a whole year to withdraw from it.

I agree with taking a magnesium supplement, either magnesium citrate or taurate. It will help through the withdrawal.

All the symptoms you are having I also had but now that I am halfway to stopping some of the are gone.

The worse withdrawal symptom I have is the anxiety (which I never had prior to Bisoprolol) Bodily jitters and insomnia.

Good luck and I hope you are free of the drug very soon.

FancyPants54 profile image
FancyPants54 in reply to

Thank you for this. I'm sorry you are having to go through it, but it helps me to see someone who might be in the same boat. How long were you on this drug before you started to wean off?

I'm not in a rush, perhaps going from 2.5 to 1.25 was too much. I will see. Someone above suggested doing it in 1/4 tablets. If tonight is as bad I will try that.

Auriculaire profile image
Auriculaire in reply to

Have you had any light-headedness or dizziness? I am experiencing mild dizziness with the latest reduction. It is slightly worse than the last step down and I am hoping it will go away as it did before once my body ajusts to the lower dose.

in reply to Auriculaire

Yes I have had a lot of light headed ness and dizziness especially dropping from the 2.5mg down to 1.5mg. I am a little better now but still have to be careful when I stand or get out of bed and the strange thing is that where as blood pressure normally goes up slightly when reducing my has gone lower.

How much are you reducing by each time?

My main problems with reducing is the insomnia and being unable to get back to sleep after about 4am and the early morning anxiety jittery feelings are bad but they get easier and not so prolonged about an hour after I take my tablet.

Auriculaire profile image
Auriculaire in reply to

Thank you - it is reassuring that someone else has had dizziness on reducing. I am going very slowly. I came off Bisoprolol the first time I was put on it nearly five years ago with no problems but I was only on it 6 months. This time I have been on beta blockers since April 2018 first on Bisoproplol then Nebivolol for the last year. I started on only 1.25 mg then reduced to about 1.00 mg with no problem . It was on the next reduction down to about .8mg that I experienced the first dizzy spells. They nearly always came just before my dose was due which was when I was preparing dinner. I put it down to low blood sugar being less masked by the lowered dose. After about a fortnight or so they went away. I have now dropped down to .65 mg and been on that dose for about a fortnight and they have come back . Slightly stronger and also at other times. It was quite pronounced yesterday . I had been kneeling down weeding and felt quite dizzy when I got up especially when bending over to pick up the weeds to put them in the wheelbarrow. I don't have any problems with jitteriness but do have some insomnia. But I have not slept well whilst on them anyway and have very vivid ,bizarre dreams.

in reply to Auriculaire

Yes I have found especially when doing gardening that I get very dizzy and sometimes feel quite nauseous. Do you have a home blood pressure machine to see if you blood pressure alters considerable when standing. They found out when I was in hospital with the Bisoprolol side effects that my blood pressure would fall up to 30 points from sitting to standing and my heat also raced to over 100 beats a minute. It took a few minutes to stabilize back to normal.

I am only reducing by .025mgs at a time because the withdrawal for myself is so severe so I think you are doing really well. Maybe if you stop on each reduction dose a little longer you will stabilize.

Good Lick and I am here if you need to ask anything else.

Auriculaire profile image
Auriculaire in reply to

I stayed on the .8 mg for about 3/4 months ! The Nebivolol pills are 5mg scored in 4. It is quite difficult cutting the quarters in half to get .65mg. I don't think I'll be able to cut them the next time and might have to go to every other day or every 36 hours to start with. I have not got a blood pressure monitor. My blood pressure has always been ok when checked.

in reply to Auriculaire

I have bought a 1mg scale off eBay which was about £10 and although it is not 100% accurate I take the average of 5 readings but after quartering a tablet use a clean piece of sand paper to shave a little off each drop of tablet. I tried to drop .1mg at the start and the side effects were to great so now I am only dropping .025mg once a week and although the first couple of days are rough I then have 5 reasonable days before the next drop.

I also drink pukka tulsi tea every day which I think helps with the jitters and take 300mgs of Magnesium Citrate a day which is said to help also.

FancyPants54 profile image
FancyPants54 in reply to

What were you put onto Bisoprolol for? And how will that be dealt with when you are off? This is niggling me. I was put on it because my heart was too fast in AF at the time. Here I am, trying to wean off to see if I feel better without it, but rather worried about what will happen to my heart rate. It's not too bad so far, but...

in reply to FancyPants54

I was put on biso for palpitations and ectopic beats but besides the side effects of the biso it made my palpitations worse.

I think there are many other medications that would help with your AF without so many side effects I would ask your doctor or consultant.

I am hoping that the magnesium that I have now been taking for several months is going to help control them a little better.

Look at Sanjay Gupter a York cardiologist on you tube he explains a lot of things about the heart and medication you can take and is very down to earth about explanations on various heart conditions.

No I'm not. It's mainly anxiety I think, and that could be from something else, which I have just adjusted back to where it normally is so I will see if that helps to reduce it. I took my BP and HR this morning and it was pretty much normal for me now again, which is good. But I feel my heart beat more I think. I thought it was faster, but no. If this other hormone adjustment helps it might also bring the HR down a bit further too, which would be nice. Basically I need to hold my nerve for now.

Are you referring to thyroid meds? I used to take a T4/T3 combo with about 9mg T3. When I was taken to hospital with my first attack of afib the cardiologist went spare as my TSH was almost undetectable and blamed the afib on that. Even though the T4 and T3 were well within range. They stopped the T3 and reduced the T4 to 75 mg. Last winter my TSH shot up to nearly 7. GP said to up the Levothyrox. I have been doing this very slowly as in combination with lowering the beta blocker I only can do one at a time. THS dropped to about 2.7 last time but I feel this is still too high. I have never felt that good after dropping the T3 and have put on more weight but am scared to try it again in case it sets off the afib. I do not think this was the cause the first time. I am pretty sure it was Cipro that was given for a suspected UTI. I had been taking T3 for about 14 years with no problems before and my endocrinologist was happy with my dose.

Not what I was referring too. I use HRT patches and I'd upped my oestrogen because I was feeling depressed. That can pull me up out of it again, but if I get too much it causes anxiety. I've taken my patch off for the day and will replace it later with the usual dose rather than the raised one. In the past I've noticed that too much oestrogen can seem to raise my heart rate.

If your T3 and T4 were within range then it wasn't the T3 that caused the Afib. It wasn't the TSH either, or indicated by it. But cardiologists do freak out about T3. You had done well on it all those years. Afib tends to increase with age and is hereditary to some extent. But I know how you feel. They frighten us so that we will do as we are told and it's so wrong. I had started adding a little T3 to my levo in late 2018. By early 2019 I was just starting to think I might perhaps be getting somewhere and I could manage to go for a walk again. Then I had a bout of Afib that didn't stop as it always had before. I did a thyroid test and everything was well within range but the A&E doctor had a fit and told me to stop it. She said I could have more T4 if I needed it. I didn't stop but I did reduce to half and waited to see the cardiologist. When he found out he had a fit too and told me to get off it. I did and nothing about the Afib changed but I felt worse again. And that's where I still am today. It quite frightening knowing that you can't really believe the heart doctors. There are papers out there, proper research papers, that show a tendency for hyperthyroidism to cause Afib, but also, to a lesser degree, but still there, for hypothyroidism to cause it too. They ignore those ad leave us sick with struggling hearts.

My Dad had AF badly for decades. His sister has it. His brother had it and that brother's daughter. I'm genetically predisposed to it I suppose. But having an underperforming thyroid replacement isn't going to help me or anyone.

Yeah - they act like it's cocaine. They don't seem to have ever learned that a normally functioning thyroid produces T3 as well as T4 - about 9 mg. They seem to believe that all you need is the conversion of T4 in the tissues.

I was only on 2.5mgs for 3 months, was rushed to hospital New Years Day with a suspected stroke but again was a side effect of taking the bisoprolol.

I will have literally lost 15 months of my life because of the debilitating effect of taking and withdrawing. At the moment I am only withdrawing by .025mgs every 5 days. When I saw my doctor about the withdrawing process and what I was going through she said I could withdraw quickly and spend a couple of months in bed with the withdrawal effect to withdraw very slowly and have a bit of a life. She also gave me antidepressant which I haven’t taken as I don’t feel depressed and also Valium tablets for if the anxiety withdrawal is bad I can take these. Needless to say I don’t want to take these either as I would again have withdrawal effects so I put up with several bad days and a couple of good days each time I drop a dose.

I have a friend who had no withdrawal effects at all and hope that you will also be lucky enough not to have any.

If you do and want to talk you know where I am.

Good luck.

FancyPants54 profile image
FancyPants54 in reply to

Thank you.

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