H I have been referred to the arthymia clinic 5 month ago, still heard nothing back about an appt. Was also referred 3 years ago, again never heard back for an appt. Would just like some advice
My heart was struggling to beat, had chest pains and couldn't walk from one room to another without feeling like I was about to faint. I am 35 and this came on suddenly. I've suffered with heart palpitations and flutters for years but this was awful. Began back in October and the slightest exertion would cause my heart to beat so fast and the all day dizziness was horrendous (bumping into things, everything off balance).
I began taking iron off my own back as my ferritin was at 20 (dr not concerned about this and said it wouldn't cause these symptoms as my serum iron was ok). Things improved after taking for a month but I had about 5 days of not taking them. Began to have palpiations, flutters etc again. When I've started taking them again my heart rate has gone up from 60s/70s to high 80s/90s.
I experience big dips in blood pressure anything from 85/60 - to more recently 120/61 (highest the top number has ever reached). Sometimes second reading can go up in the 70s. Always had low blood pressure and just recently bought a blood pressure monitor.
My heart problems get much worse after eating for some reason and I can only eat little amounts not mixing protein and carbs as my heart just goes funny.
My heart is sometimes irregular and was meant to receive an overnight ecg but that never happened
The longer I'm being left the worse it is all getting. Family history - dad irregular heartbeat maternal grandfather - triple bypass in 40s, angina in all grandparents and heart issues in a couple of my aunties in their 50s (valve issues)
Also bought an oximeter and my oxygen has gone up since taking iron, it also shows my heart rate goes up into the 110s upon standing up from rest position, haven't used it while actually carrying out any activity. I've lost muscle strength in my body for a few years now, just feel weak as a kitten and can't do anything moderately strenuous. Walking is about it, even pushing y children on the swings I can no longer do
You must follow up the promised appointments in the cardio. dept. and keep asking when you may be seen. Where are you on the list for an appoint.? Keep on asking.otherwise nothing will happen. i am afraid that is how it is now and those who 'shout' the loudest are more likely to be seen. This is not how it should be but it is the way of things now. List your priorities and deal with each problem one by one. I have actually been to the hospital to the cardiac dept. and this sometimes get you an appoint. Make sure you have all your details of the promised appoints and do not leave the hospital until something is done to change the situation.What is your gp doing to help?
Nothing, I'm just told I'm on the waiting list but the hospital tells me an app can't be made as there is nothing on the referral form but the doctor insists it says 'palpitations'. Hospital now tells me its a 42 week wait. Is it normal for your heart to race after eating? It seems to worsen when I eat a small-medium meal
i am not a medic .Most people on here respond with regard to their own experiences.As I wrote to you you must act on your own behalf or nothing will happen. This is how a lot of the nhs is functioning at the moment....not very well.
I've also developed varicose veins in my left leg over the past couple of years, something my maternal grandfather who had triple bypass in his 40s has and has severe leg problems with them in his 70s now, does this increase heart risk? I have always had poor circulation, limbs go dead in the night pins and needles and constantly cold when everyone else is too hot ? Basically I'm just asking should I be concerned with all these symptoms
Throw your toys out of the pram, bang some desks and start being a real PIA or nothing will happen. You have the right to be treated and you are being ignored. Don't be!
If all else fails default is emergency services or a private cardiology appointment but the latter should be last resort.
Emergency services use costs your surgery money and your GP would probably get a sharp comment from them if you turned up in A&E a few times with something your GP should have investigated thoroughly.
I have actually been to the walk in clinic and was shouted at and told 'we simply can't have you on the list of you've had a heart attack go to a and e'. I've been to a and e twice but was too ill to wait up to 15 hours and had to get home to my children as there dad has to go to work and there's no one else to help. I phoned an ambulance once it didn't turn up and after 4hours I just cancelled it and went to bed thinking I wouldn't wake up
How is your digestive system? The reason I ask is that my daughter has been unwell for some time and has recently been diagnosed with coeliac disease. She was only having mild bowel problems but has suffered from nutrients not being absorbed. I have had the same problem with heart pounding after meals but at the same time I was having episodes of diarrhoea. That was all put down to AF when I was diagnosed but sometimes I wonder if it was the other way round - digestive problems causing the heart disturbance. If you could afford a Kardia - little device which, paired with your phone can record a rhythm strip which is accepted by cardiologists. It costs about £100 pounds but many of us have found it worth every penny to prove what sort of arrhythmia we have got. Palpitations in medical speak simply means awareness of your heart beating so no wonder the clinic is not bothered.
My stomach is awful, began age 15. Blows up between my ribs every time I eat anything. Was told I had h pylori in 2014 but I had back to back pregnancies and nurses do didn't want to start the antibiotic treatment at that time as I was told h pylori wouldn't cause my issues or eradicate them after treatment. Then the pandemic happened. Asked for treatment of h pylori but they are telling me it can't be found in my notes and now they say I don't have it after a still test. I do have absorption issues but doctors won't listen. I'm chronically iron deficient no matter what I eat and I now inject b 12 after being advised by a hairdresser who suffered from pernicious anaemia that I sounded exactly like her before diagnosis. Drs won't entertain it. I'm not coeliac but I cut it out as much as I can now. Thanks so much for the advice I will look into the kardia device
I totally agree ........ absolutely ..... go kick ass ! And bloody hard too. I have had to do this in recent years and I used the good offices of my MP. When I wrote to him outlining the issues I requested also that he take my issues up with the Secretary of State for Health ( at the time).
I tell ya what - it was as if my Fairy Godmother had waved her magic wand. The response was astronomical ( it involved my local NHS Hospital Trust) and the grovelling of apologies too. But they weren't the point - what was the point was getting the care I needed at the time. It worked though.
That is terrible. When I was diagnosed with AF I went on metroprolol the following day. I had had a stroke caused by AF and thyroid cancer undiagnosed until a carotid art arteries scan which was all clear.
You need to follow up when nothing has gone forward. We have booking clerks in NZ and I keep on them as they know if there is anything forward.
It happens all the time but first one gets a letter after the referral to tell you where you are placed in wait time.
If you haveAF the ? is whether you need anto.co.agulant to prevent stroke.
Also if you are over 100 H/Rate and you need an operation surgeon and anaesthetists won't operate.
Manage Your Health and raise the roof. You deserve to be heard with tests done.
I know, I've finally got a referral to gastro and I'm worried about the endoscopy as I really think I would die if I was put under now. I did feel like I was going to have a stroke and I would jump at a loud noise and scare easily if that makes sense. The phone ringing would make my heart jump and I felt like I was going to keel over When my kids were fighting or my husband was arguing with me as my chest would start to hurt and I would feel like I was going to pass out. Things have improved but I can't shout at my kids like I used to and their behaviour has gotten worse because of it. Can't discipline in the same way as I can't get worked up as I feel too weak and honestly feel like I would have a heart attack. I've been taking b12 injections and I really feel they've kept me alive as they bring homcysteine down and prevent strokes/ risk of heart attacks
You know that the shout has to grow louder and louder to get a resonse.
Children seenm to play on it.
I would sit them down at any age and tell them the truth. Can you help Mummy, me? You can earn stars. Then we will talk each week about what we can do. etc.
I had a mouth to stomach test under an anaesthetic and a colonscopy too then an ultra sound.
Little balls in the vicinity of gall bladder. Then I told them that my grandfather had his gall bladder out.
Ok for removal.
Stones were not calcium stones but fur balls. My gall bladder had disintegrated and surgeon picked off bits from surrounding organs!
That was in 2000. Never looked back. Acid stomach and episodes of pain since very young. Mum gave me Dinnefords (Milk of Magnesia).
No chicken fat or melted cheese or fatty foods for a time. Even 1/2 avocado no good.
That was year 2000.
You are sedated with these tests.
Take care as you get on the road to recovery, Rachael. JOY
Anither 4 portholes and Gall Bladder removed through tummy button.
Call the hospital and ask where your referral is. I never wait longer than a month and if I have had no acknowledgment of the referral ring the relevant hospital department and ask about my appointment. they may well then tell you that you have another 3 months to wait or whatever - but at least you know it is there and they are dealing with it. Referrals do get lost and mislaid - even on computer systems - especially on computer systems so don't be afraid to call and ask whats happening.
Hi if you understand will allow book a private appointment with cardiologist .Absolutely worth the £300it will cost as they can get you seen quicker on the NHS.Dont feel guilty ,y cardio wait was almost a year on NHS.
Have you had your thyroid levels checked? Can you think of any specific thing that happened before these problems started? Like an infection or a covid vaccination? The discrepancy between what your GP and the hospital say about the referral letter needs to be cleared up. I would be inclined to write to my MP about this and send a copy to both the GP and the hospital. The advice about the Kardia is good if you can afford one as then you would have paper documentation of what is going on in these episodes. I strongly suspect your age and sex are leading to dismissal of your problems by your GP. This happens to lots of women but your family history of heart problems needs to be taken seriously.
Once you see your GP and given your age you should also rule out untreated severe sleep apnea. Symptoms such as shortness of breath, palpitations, tiredness low O2 are all symptoms of this....something to be aware of.
Yes thyroid checked they are all in range but on lower end. I was very run down after a stressful move then my grandfather died in october. I had been having dizzy spells a year before though and heavy monthly blood loss a couple of years before, heart skipping and fluttering for around 3 years steadily getting worse. I'm told I have ME so my health has always been bad since age 15 but it was like a complete health crisis in october. About 6 months before October I remember thinking something is really wrong with my heart here, I was also very weak and my husband noticed how I couldn't help him lift something and he says now he thought it was off at the time and that I was just trying to get out of it as I've never been weak like that. When we found out we were moving in July I knew I couldn't physically do it but we had to and I was wrecked. I was slurring words and falling into things and constantly dizzy at end of October, since I starting injecting b12 that has gottenbetter but if I stop it comes back. I don't believe I've been absorbing b12 or iron and it's like I've been malnourished despite a healthy organic diet to manage my endometriosis. I don't know if that's what's impacted my heart as I know long term iron deficiency can do that. They say I haven't got anaemia and my serum is normal but my ferritin was at 20 (iron stores).
My AFib, which has very recently become permanent after 20 years of it being intermittent (paroxysmal), now seems to become more prominent after I've eaten. Plus if I move it also rears it's head. That becomes most evident when I'm in bed. I may be lying there with it being no more noticeable than a little mouse inside my chest, but if I get up for a tinkle, suddenly it's more like a rabbit until it settles down again. At it's worse mind you, when my AFib was paroxysmal, it was like a kangaroo! So you're not alone Rachael.
What makes me laugh on here is the way certain members tell you to simply have a word with your AFib nurse or team 😂 What's that I think to myself??? Here in the UK I've had a cardiologist (electrician, not plumber) assigned to me since last October, but have yet to meet him. In order to diagnose AFib I had to buy a Kardia and send him PDFs of the traces I took whenever an episode occurred. But it took weeks and weeks for him to respond. I've since been put on Bisoprolol (beta blockers)and Apixaban (Blood thinners) remotely by email with absolutely no instructions whatsoever what to expect or what side effects there might be. I've finally got an appointment to speak to someone in May, so hopefully might find out a bit more then. As for AFib nurse or team, don't make me laugh!!
So did they diagnose you with the readings from the kardia or did they actually do any testing in person? Did they say what causes your AF. Yes the UK is horrendous I've never received help from the NHS, left to just deteriorate with my stomach issues which has had an impact on every system and now b12 deficiency undiagnosed for years requires me to inject myself every 2 days getting the b12 from Germany (fobbed off as Ibs) heart issues (fobbed off for years as anxiety) extreme weakness and tiredness (fobbed off as ME) and I had to pay private when I was told my extreme pain was 'constipation' turned out to be stage 2 endometriosis and my organs were fused together causing the immense pain. If my head was hanging off the first thing they would ask is 'are you stressed'
I was offered an ablation on the strength of Kardia readings showing pauses in heartbeat. Some surgeries lend them out, must save a fortune in ECGs and monitors. The NHS needs to work smarter.
Yes from diagnosed by Kardia. I had originally worn an ECG monitor for a week, but typically my AFib didn't materialise itself, despite me deliberately goading it with beer, which seems to be my trigger. So the only way was to buy this Kardia device and then take readings once an episode emerged. So was diagnosed and prescribed medication by email essentially.
A very fit 68 year old. Might have developed AFib through high intensity training regimes throughout my adult life. Or by drinking more than I should. Or both!
it is a horror story. If you can pay for a private appointment go for it. NHS really got horrible reputation thru your story. Or create a go fund me account people might able to help you if needed.
Sadly we're in an age where you have to chase and chase. I was referred last July with af, heard nothing by September so I spoke to appointments who had received the referral but no action initiated!! They very kindly gave me the email address of my ep's secretary and she spoke to him and agreed to see me November 8th, got a call the day before he wasn't well so cancelled!! Rescheduled 20th November, nurses strike, cancelled but reinstated to a phone consultation. Agreed to book me in for an ablation 3 - 4 months wait!! Phoned last week for an update still 3 - 4 months as I'm in the "routine" category!! , Had an appointment with my gp (yes got a face to face) and he agreed to write and try getting me bumped up the list? And so it goes on and all the time daily life is a challenge, no energy, shortness of breath so frustrating but if you don't chase nothing happens.
Sounds very familiar, I've been chasing up for months and phoned secretaries to the cardiac doctors. Ended up getting huffy with me and saying contact your doctor, round and round we go
Sorry to hear that you are having trouble accessing medical care. Perhaps you need to shout louder to get noticed, or try another GP? I’m with Buffafly here and suggest you get a ‘Kardia’ from Amazon (about £90) and record your ECG during an event. Take this to your GP or to a private cardiology consultation. This could avoid numerous visits to Cardiology OPD for 24/48Hr holter monitors which may not capture an event. Most cardiologists accept that Kardia ECGs are of diagnostic quality and this may help you get the treatment you need more quickly. Good luck on your journey.
where do you live Rachel? I live in Cambridge and have a trusted life saving sensible cardiologist. I do see him privately once a year . He is worth every penny !!!!!! Not all cardiologists are . When I have severe AF I go straight to A and E !! I would wilingly wait days in there when I feel so ill. It feels safer, you just have to zone out and not look at other people.
All this banging around , phoning, e mailing writing to MPs is likely to bring on AF. Go to A and E or see my man.
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