Would really appreciate feedback if you have the time.
Does everyone with heart failure have oedema,
(water retention) or is it just right sided hf that causes it,
or specific heart damage such as heart valve damage, or chronic heart damage?
Just a yes or no with your diagnosis in comments would be useful but I would also be interested to know if after heart surgery or treatment, you still suffered with oedema.
The reason I'm asking is because I've suffered with mild oedema since I was a young child with no explanation from the NHS,
but I've also suffered with hashimoto's for many years, so I'm wondering if I've had right sided heart defects since birth.
This year, before I was diagnosed with right & left side HF & AF,
the oedema was so much worse than ever before, but it was non-pitting,
whereas it's pitting oedema that is normally associated with HF.
I was given diuretics intravenously & in tablet form whilst in hospital & over 11 days I lost a stone & a half in water weight.
I'm currently taking Furosomide;
2×40mg twice a day plus Spironolactone 1×12.5mg with no weight loss.
I'm roughly a stone & half overweight but still think I have water weight to shed.
Last week I saw a HF nurse who checked me over, she could see that my ankles were still a little puffy but she said that because they were not pitting, ( leaving a deep dent after being pressed with fingers)
she thought It must be due to something else, probably hashimoto's.
Also,
If there is anyone else with thyroid issues linked to this forum, who has also suffered from heart Failure or/& AF & oedema please get in touch.
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Butterfly65
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Hello again & thanks for replying. The mitral valve is on the left side of the heart so it would make sense that oedema is just right sided HF.
I have both right & left sided HF with mitral valve damage & also severe tricuspid damage, plus damage to both left & right ventricles.
Just that I was speaking to a friend who said that two people she knew who have or had heart valve problems didn't have oedema so was wondering if it's just right sided damage.
My husband has left sided HF due to damage caused by a heart attack. He's had HF since at least 2012 but it's only I'm the last few years that he's started to get oedema. Last year he had it so bad that it literally took months to get it under control.
There is also a condition called venous insufficiency which also causes your ankles/legs to swell up but it has nothing to do with HF at all.
Hello & thanks for replying. I first remember my ankles swelling when I was just 7 years of age, (I was of normal weight & height)
it might have happened before that but that's the age I remember it bothering me. Both parents passed away prematurely 20 years ago so have no one to ask & not many photographs of me as a young child.
I am aware of other reasons for feet, ankle & leg swelling but no GP has ever bothered to diagnose it.
Yes that is the usual procedure. My husband has to weigh himself daily and if he puts on 2kg within 2 days then he has to contact his nurse. Very odd that you had swollen ankles at such a young age though
Yes very much so as you can see from the photo. Although they've never been able to totally remove the fluid, mainly because he has kidney issues made worse by the diuretic it is under control at the moment & hopefully that will continue 🤞
Thank you for posting. I do get deep indents like that when I wear socks from the elastic at the top but I don't get indents when I press hard with a finger.
Is that what the indent is higher up on the knee?
I think I'm going to have to ring either TBHF or the HF nurses at the hospital to ask them why some of us have oedema whilst others don't.
The only other reason I can think of is that those of us with oedema are in class 3 or 4 of HF stages numbered 1 to 4.
If I'm right or get a different answer I'll let you know.
Yes the indented bit is the pitted oedema. The way to tell is by pressing your finger in, you shouldn't be pressing hard, and if the indent doesn't immediately spring back or is slow to spring back then it will likely be fluid retention. I chose to show you that photo as it shows the puffiness/swelling of his leg above & below his sock line, this swelling is fluid retention The sock line doesn't spring back for a few hours. I've posted another photo that shows the indentation from pressing his legs with my finger. I took the photos to send to his nurse so that they could see how bad it was getting. I'm not sure why your socks would indent you but pressing with your finger doesn't other than perhaps your socks are too tight? How long does the sock line stay there?
I'm not sure that you have to be HF stage 3 or 4 for oedema though, the first time my husband started retaining fluid his EF was 51 & apart from the fluid retention he was asymptomatic.
Yes, good idea to get clarification from the nurses & yes please let me know what they say
I have been suffering from water retention now for months and can put on 4lb in a day and it goes the next . Saw my GP but says they don't give out water tablets and referred my back to my cardiologist and has requested him to authorise an echocardiogram been 4 years since my last one . Had a letter last month to say I am on the waiting list this was after I had been waiting 2 months . I don't expect to been seen until the new year. It's not the pain that gets to me as been in pain my whole life with my neurological condition which effects my limbs and host of other things.I was born disabled but only had my diagnosis April 2022 when my neurologist had the results of having my whole genome genetically tested and it's rare . The blood was sent off in January 2020 but because of covid results didn't get sent off but lucky my neurologist put me on Clonazepam and after 32 years of limb jerks and 4 seizures within 2 weeks my limbs where still and no seizures.
My legs from the knees down swell and the skin gets very red ,shiny and very tight feels like my legs are being strangled . I was diagnosed with a small hole in the side of my heart 2020/2021 when a MRI on my heart confirmed where the hole was and luckily the connections between the chambers of my heart are intact. Apparently we have flaps round our heart they close before birth the one between my heart and lungs didn't. It's small so safer to leave alone unless I get chest pain which I don't. Do get breathless at times and have PAF on Flecainide and Apixaban put on them in 2021 . Been on Ramipril for decades.
I lost 7st from 2017 over 5 years by counting calories. The last 2 years battling to lose that last stone I want off. I stick to my cal allowance but with the water retention it's driving me mad as I know it's not fat but water putting my weight up and down . Be glad to see my cardiologist. And get the help I need .
I had mitral valve regurgitation and had severe water retention before my op. Was also taking 40 furosemide daily but still swollen lower legs and sausage fingers.
Post op I’ve only had a problem once (day of an early morning flight).
Years ago I had two bouts of it some years apart but the hospitals I went to only gave me Lasix and Potassium and sent me home while telling me I had a mild heart murmur. Back in 2023 I started having shortness of breath and extreme fatigue which turned out to be partially due to a bad reaction to taking Ramipril for high BP. For a time after I stopped that med it got a lot better but then became rapidly bad with the leg swelling and shortness of breath frighteningly severe. I went to an emergency room and the did extensive testing there and admitted me to the hospital putting me on IV push Lasix immediately, My aortic valve was barely working and I was told I needed to have it replaced as soon as possible or I wasn't going to survive. I had a TAVR and immediately felt much better as it right when I woke up from the anesthesia. I am still on the Lasix and Potassium but do not need to take it all the time as the edema comes and goes but is never anywhere near as bad as it had been
I had swollen ankles as a child, and I was at the time diagnosed with supra ventricular tachycardia (SVT). It was as an adult of 43yrs old, after an angiogram, I got diagnosed with Dilated cardiomyopathy and heart failure, left side. Things are a lot worse now and I battle a lot with fluid retention especially in my upper stomach and ankles. The heat makes it worse. I take Bumetanide after taking furosemide, which stopped working, now this don’t seem to be working much either. I’ve started a new tablet. At first it seem ok but now I’m not to sure. But I’m only on the lower dose.
Thanks for taking the time to reply. Mine have always swollen more during the summer. If I eventually discover it has always been due to my heart health it would makes sense because our hearts need to worker harder in warmer climates.
I also sweated much more than my siblings & peers during PE, games & dance but I wasn't overweight.
kids who were overweight normally had average sized ankles with no swelling. My stomach swells from top to bottom, also had to have wedding ring stretched years ago but my fingers & wrists don't seem so bad recently so wedding ring's become lose.
I've noticed during the past couple of weeks that I'm not peeing as much as I initially did.
I was talking to HF nurse last week about how we tend to normalise things that we never should normalise.
Our parents were ignorant because they didn't have access to the info that we have today.
On one hand, that was beneficial to them because they were able to live their lives without the anxiety that's caused today by information overload & contradictory information,
but on the other hand,
their ignorance could cost them their health & their lives.
My ankle swelling wasn't viewed as a serious problem by my parents because they'd normalise it by telling me it was hereditary or something along those lines.
My parents didn't worry as long as we seemed & looked healthy & ate well.
My mum was a nurse, she would always press it and say it’s pitting😀whatever that meant, and I was told to put my feet up. I was always out and about I think she thought I was ok until age 15 when I had an SVT attack and they had to take me to the hospital and I was put on a drip for a few days. At the time it was put down to exam stress, which wasn’t my case as I wasn’t bothered, then I was put on propanol and told I had a bad heart and had to take things easy. So I never did work out whether it was stress or a bad heart. At 43 I discovered I have electrical problems I was born with.
Thats interesting. Mine wasn't/isn't pitting but I also have a fast heartbeat like you do with chaotic electrical signals but I'm still waiting for my MRI scan results.
When I went to A&E at end of August it was 180bpm.
The thing is,
a few weeks prior to this in June of this year I had a strange week that become progressively worse.
I think the first thing was me waking up in the middle of the night with a heavy nose bleed.
I haven't had nose bleeds in years so it seemed strange.
The next night I woke up with severe right shoulder pain &
the next day my eyes wouldn't stop tearing no matter what I tried.
That evening my husband went to bed earlier than me &
I fell asleep on the sofa.
I woke around 1 or 2 O'clock with severe pain in both eyes. I panicked when I realised I couldn't open either of them.
I was in complete darkness calling out to wake my husband to help me.
We ended up In A & E in the early hours of the morning,
the staff seemed clueless about my eyes that were both badly swollen along with rest of my face.
I was incredibly hot & kept complaining that I felt like I was burning up, & nauseous, plus my eyes felt as though they both had shards of glass in them I was also slightly breathless.
I couldn't open my eyes & when the staff tried to open them the pain was excruciating, so they couldn't open them.
Eventually they could see how stressed I was becoming so they gave me oxygen & hooked me up to a heart monitor.
This Is when I was first told that my heart rate was over180bmp.
The staff kept telling me they were worried about heart rate & that I should try to be calm. Eventually after around 7 hours I got to see an eye DR who said I had an infection in both eyes & I was sent home with a tube of eye ointment.
They didn't even advise me to get a follow up appointment or to contact my GP regarding heart rate but it played on my mind over the coming weeks because I hadn't really felt well after the eye infection episode.
They assumed that the stress of the eye pain was causing my rapid heart beat but that clearly wasn't the case.
I think I told every doctor I saw whilst in hospital. I've decided I'm going to write everything down with bullet points & present copies to the HF nurses, cardiologist & my gp.
It's a bit like the chicken & the egg, is it chronic stress that might contribute to heart damage, or does heart damage cause us to be stressed. I'm really struggling with the waiting for MRI results that I had done 2.5 weeks ago.
I have an appointment first week of January with consultant but I've already had one appointment with him cancelled that should have taken place next week.
The waiting must be less stressful for those who can afford to go private.
how long did they say it takes? I think these days they take a while but hopefully you will hear sooner. You can always ask your nurse the next time you see them if that’s before the cardiologist.
Staff at Papworth said could be up to 6 weeks but usually sent within two to three weeks. I did speak to a nurse last week & let her know that I was really upset about consultant appointment being rescheduled from Nov to Jan 'cos I'm left in limbo. She said that she'd push papworth for results.
I have an appointment with HF nurse in a couple of weeks time so I'm really hoping they'll have results back from Papworth by then & the nurse might be able to tell me more 'cos I'm not very good at this waiting game.
I've felt unwell, as though I've been running on low/empty for a long time but more so during the past 12 years.
I'm 59 but feel as though most of my life has been an uphill struggle health wise.
It is the not knowing but hopefully you will get a quick result. Having a nurse is good. I use to prefer seeing the nurse. I don’t have one anymore but I see the cardiologist every 6 months. I saw him recently now I’m seeing him again in 4 weeks because I’m on a trial drug.
Stay strong, I know it’s a lot to deal with when you’re feeling ill and you don’t have answers or you’re waiting for them. Let us know how you get on.
For me, It's the worry of an underlying cause, (hashimoto's) that hasn't been diagnosed by NHS that may have caused heart failure & AF or possibly sleep apnea caused AF. I've had to live my life with awful hypo/hashimotos symptoms for well over 12 years.
Oh no!! I hope you get it diagnosed. I don’t know anything about hashimoto but I think I’ve seen it mentioned on here before. I had angiogram which diagnosed dilated cardiomyopathy for me. It runs in my family.
My legs used to swell in Summer even before I had my HA and got left & right stents. I bought an EMS foot stimulator and it pretty much relieved them.
After the HA I got puffy ankles & legs again. The doctor prescribed Water Tablets and other things that had side-effects without being particularly effective. Then the Heart Failure Nurse said I should either keep my legs up, higher than was generally possible, while at my desk or keep them moving. I got an Orbitrek (which is moving my legs while I type this) and by the time I was signed off by the HFC, the swelling was pretty much gone.
I have HF that is under control. I had oedema early in my diagnosis and it is now much improved. I also have lymphodema; this is genetic. It started when I was 15. To keep it under control I have Manual Lymphatic Drainage therapy from a registered practitioner (highly recommended).
My cardiac history: aortic valve replacement 9 years ago, AF with tachycardia/bradycardia., severe LVSD with ejection fraction 20%. EF now 55% and well controlled with entresto, dapagliflozin and metoprolol.
Oedema of the ankles is important feature of heart failure but not all HF leads ti oedema. Yes I agree impaired pumping of the right chambers of heart is also known as congestive cardiac faulure leads to oedema, Failure of the left chambers of heart ( LVF) do not lead to ankle oedema unloess vey chronic. Its very important to remember some medication particularly for hypertension leads to oedema. Are you on other medication apart from diuretics. Poor circulation due to varicose veins can additionally lead to oedema. May I correct you? Mitral valve is on left side and that can cause LVF. I hope that helps. Regards.
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AF & Heart Failure
Diuretics use for treating blood pressure
Heart Failure onset 
Heart failure
HF diagnosis due to 2 leaky heart valves 
