Mitral Valve Af and fed up

[Gilly1372]

hi all, I’ve been diagnosed nearly two years ago with AF. Cardio version worked for 5 days so was put on Amiodarone 200mg along with the usual others, Apixiban, Nebivolol. The Amiodarone messed my thyroid about so was put on a higher dose of Levothyroxine. Fast forward 5 months I get an appointment with the Cardiologist who informs me I have Mitral Valve problems but believes an ablation will not be beneficial. He said he would reduce Amiodarone to 100mg to see if that would help me not go back into AF and is looking at doing another cardioversion. I am feeling absolutely awful. I’m constantly exhausted and unable to walk too far. Is this normal?

[Autumn_Leaves]

I’m sorry to hear that. Have you discussed mitral valve surgery as an option? I don’t know much about thyroid but perhaps you may need to review that situation too, in case you need your medication adjusted.

[Gilly1372 in reply to Autumn_Leaves]

thank you Autumn Leaves. I’ve got to go for another echocardiogram and chest X-rays so will probably know more from there. It’s just the tiredness that is getting me down. I’ve had a very stressful year so far with my darling husband dying and then having found my kitchen has been leaking for a couple of years which has resulted in all that being ripped out so maybe that hasn’t helped but it’s a struggle these days to just get out of bed. I just wondered if anyone else had this exhaustion and breathlessness and whether it was normal

[Autumn_Leaves in reply to Gilly1372]

I’m sorry to hear that. You really do seem to have a lot going on. Your upcoming echocardiogram will provide you with up to date information about how well your valves are functioning and if there has been any progression. They tend not to operate unless you have severe regurgitation as it’s quite a major op, but I have read people’s experiences on the BHF forum who have said their AF improved and their atrial enlargement reduced after valve surgery, which I know sounds promising but it’s major surgery, certainly compared with an ablation, and it’s not done with relatively moderate regurgitation presumably because the risks have to outweigh the benefits. I suppose you’ll just have to bide your time until you know the results of your echocardiogram. It might be worth giving the BHF nurse helpline a ring so they can help you make sense of all this.

[jeanjeannie50]

Have you tried any other drugs to correct your heartrate? Flecainide, Diltiazem etc ?

Amiodarone damaged my thyroid, I was fine before taking it but will now have to take Levo for life to rectify it.

Yes, it can be normal to feel as dreadful as you are if your heart is still out of rhythm? I felt that way and had to adapt my life around it. At the time I felt I used my supermarket shopping trolley like a zimmer frame and like you I couldn't walk far at all. A cardioversion put my heart back into normal rhythm and a third ablation followed.

I know nothing about the mitral valve other than mine is slightly leaky, which is apparently normal as we age. I think you need to find out just how bad yours is.

What is your thyroid TSH result now?

Feel so sorry for you.

Jean

[Gilly1372 in reply to jeanjeannie50]

Hi Jean, I had under active thyroid before all this, so used to taking the meds. I’ve just had some bloods taken so waiting for results. I’m on 100mg a day at moment. Yes it is very draining isn’t it. Cardiologist thinks an ablation will work, not sure why as it was on the cards with maybe a pace and ablate. Oh well I suppose they know best eh!

Thank you for your concerns. We are all init together aren’t we so I appreciate the support ❤️

[waveylines]

Gilly it could also be the drug Amiodarone causing the fatigue, especially as you have hypothyroidism. Even though they've reduced the dose Amiodarone has a long life so it could be quite a while before you notice a difference.

A friend of mine had a leaking mitral valve that had to be replaced. She opted for Keyhole. She's now six months post op and has far more energy with colour in her face. She felt dreadful before her surgery and could not do much.

[Ducky2003 in reply to waveylines]

Hi. Can I ask where your friend had her op please? I'm under UHCW and last time I spoke to the surgeon, he wasn't keen on keyhole surgery but I've since heard that they have done some.I've heard that the recovery time is a lot quicker with keyhole too.

Many thanks.

[waveylines in reply to Ducky2003]

She had her mitral valve replaced by Mr Hunter, Thoraisic Surgeon at Sheffield Northern Hospital. He specialises in key hole surgery.

[Ducky2003 in reply to waveylines]

Thank you. That must be THE Mr Hunter who does the Hybrid ablations, as seen by MummyLuv and 4chickens .

[waveylines in reply to Ducky2003]

Indeed it is. He's done my mini maze too. Recovering at the mo.

[Ducky2003 in reply to waveylines]

Ooh, splendid. Hope you have a full an speedy recovery.

[waveylines in reply to Ducky2003]

Awww thank you!! ♥️♥️

[MummyLuv in reply to Ducky2003]

He has done thousands of valve replacements Ducky2003 vs hundreds of mini maze. Valves are his day job. He’s worth a chat with. X

[Ducky2003 in reply to MummyLuv]

I didn't realise he was a plumber as well as electrician 😉.Sheffield is a bit too far for me but I know the keyhole has been done in UHCW since I first saw my chap. They are going to do a Cox IV Maze at the same time if it's OHS but I don't see why they can do some sort of Maze at the same time keyhole.

Hope you're still doing well.x

[MummyLuv in reply to Ducky2003]

All good here, grateful to my electrician 🤣🤣. Quite right, push them for what you want!

[Rainfern]

Hi Gilly, that’s really bad luck and hope you soon find a way forward to better health and energy levels. I recently joined the Thyroid UK forum for info to help my husband and they seem very well informed and may be able to help regarding any potential medication adjustments or supplements. And keep posting here. I know how miserable it can be to feel breathless and low in energy - we’re all here for one another.

[Gilly1372 in reply to Rainfern]

yes thank you Rainfern. I’m also on the thyroid group, I’ve been under active for 15 yrs and it has been a struggle with doctor’s understanding it, but I stick my ground and go with what I feel is best for me with the doctor. I think I’m really run down with everything else going on…..I’m on a respite break at the moment but my goodness it’s a struggle to keep my eyes open. I expect it’s a mixture of the heart and thyroid! But thank you 🙏

[Ducky2003]

I'm on Amiodarone but can't say its made me breathless or tired. Bisoprolol did (stopped that 7 years ago) and being in AF persistently did.Fortunately, after another cardioversion 18 months ago, which has held me in NSR, I have felt massively better.

Had an ablation 2.5 years ago which didn't work and then they discovered an issue with my mitral valve. The AF has caused the left atrium to enlarge, which has pulled the valve out of shape.

I'm currently on a list for valve repair surgery and they plan to do a Cox VI Maze at the same time.

My surgeon seems to think I should be suffering and out of breath with the valve issue but I'm certainly blessed to not be at the moment.

Hope that your tests show no imminent action is needed on the valve but make sure that they keep on top of the AF so that doesn't make anything worse.

[Gilly1372 in reply to Ducky2003]

Thank you Ducky, I hope they sort you soon 🙏

[Ducky2003 in reply to Gilly1372]

Thanks. I'm not chasing it before Christmas though 😁.

[Autumn_Leaves in reply to Ducky2003]

Good luck with all of that. I’ve heard people feel so much better once they’ve recovered from valve surgery.

[Ducky2003 in reply to Autumn_Leaves]

Thanks. To be honest, I'm feeling pretty chipper, much to my surgeons surprise, but I'm acutely aware that could change suddenly, so I'm grateful for feeling as well as I do currently.

[2learn]

Hi Gilly, just personal experience, but I have AF and over 2yrs ago my mitral valve leak was bad enough to need surgery. Had open heart Dec21 to repair valves and they did an ablation when I was on the table. Nearly 2yrs now and a recent heart scan, 2 mths ago, says everything is ok. So fingers crossed for yours being sorted out.

[Gilly1372 in reply to 2learn]

Wow, that’s good news 2learn. Maybe after all the tests I mat know a little more. Good luck in the future and May it long continue to work 🙏

[Ducky2003 in reply to 2learn]

That's encouraging as I need surgery. Did they do a Cox VI Maze or just a normal ablation, if you don't mind me asking?

[2learn in reply to Ducky2003]

Hi Ducky, sorry but I have no idea, it wasn't until I'd started looking on this site that I became aware there was more than 1 type of ablation. I think it was just standard NHS issue, whatever that is. I've checked my info from surgeon and it just says ablation.

[Ducky2003 in reply to 2learn]

Ahhh, I would have thought they'd specify if it was a Cox IV Maze.Good to know uou have recovered well.

[Autumn_Leaves in reply to 2learn]

All sounds good! I’m glad you’re continuing to do well.