I am really unwell right now an loosing the will to carry on. Know I should seek some medical help but who do I go to for help? Honestly, over the past 18 months I have had to fight to get the help I needed via the NHS. What a battle that was.
Last week, had severe palpitations lasting 6 hours which is a new experience for me. Usually, when heart plays up, I get AFib notifications, and AFib reading on my fitbit when I do heart check. Got no AFib confirmations so knew this was something new, perhaps a warning sign after coming off Amiodarone 10 August, that something was going wrong with heart which needed to be addressed.
So day after, went an seen GP re: palpitation experience. Besides was still really unwell with symptoms that emerged after palps stopped. Ran all my symptoms by her, showed her my fitbit heart reading to validate my reason for being there. Explained that I not been on any AFib medication since Amiodarone was stopped in August. Asked her if palpitations indicated AFib was sitting in the background waiting to pounce. Response was, "You will have to ask your cardiologist" ! !! My response was, "I not under a cardiologist was discharged right after I had stent fitted in May" Now here comes the worse part, she informed me, "You can't be referred to a cardiologist because you have already seen one in the past two years" I was/am devastated.
What's going on here?. Besides AFib, I also diagnosed with Enlarged heart, Angina, hypertension, mild mitral stenosis. Also had a stent fitted on 16 May (no follow up assessment). According to cardiologist who discharged me, some where in the past I have had a heart attack that I'm not aware of. Considering, list of heart problems and stent should I still be under a cardiologist?
To top it all off, get again, got severe palpitations 6pm yesterday evening which lasted until then AFib joined the party at 11pm whereby I received first AFib notificatios from fitbit since last one in May. AFib numbers were very high at times showing I was in peak cardio mode. Afib finally stopped this afternoon. Feel like I've done 10 rounds with Mike Tyson.
So yes I am loosing the will to carry on! Feel so abandoned and deflated. Reached a point whereby I unable/unwilling to fight for some health care any more.
Incidentally, I also hypothyroid...due to Amiodarone side effect which pushed thyroid numbers to bottom of range. Hence was advised to stop the Amiodarone.
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DizzyD
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I'm not in the UK, but I must react to your message. What about the British Heart Foundation? They have nurses who can be contacted by phone. They should be able to offer some help.
Certainly others on here will be able to offer some advice and support.
Let us know how you get on. There are people here genuinely interested, even if you feel you are getting nowhere with a system that is supposed to provide help and support to those who need it.
Sorry to hear you feel that you are not getting the help that you need.
I'm not too sure why you mention palpitations, they are what people get when anxious/nervous. I have no idea what severe palpitations are? Perhaps you are using that expression to mean AFib or Aflutter?
Amiodarone is a strange drug and takes months to leave your system as you probably know. So yes that episode you had could have been due to that drug finally leaving. It damaged my thyroid too which I was not very happy about.
You say your AF numbers were really high, what were they?
It's dreadful how our NHS is crumbling, especially since Covid. I can understand your frustration. The only advice I can give you, if you can afford it, is to see a cardiologist privately. I believe the cost is about £200 and then get him/her to revert you back to the NHS, if any follow up is needed.
I don't live in the UK, but I read about the NHS and my sisters and cousins etc, are still there and I hear various snippets from them and it astounds me - Nye Bevan must be turning in his grave. I read about how overworked they are, but frankly, I know a woman who was a senior midwife, but is now behind a desk after a hip op. who seems to have more holidays and weekends away than anyone I know. She has just come back from the Far East, has had numerous weekends in places such as Bucharest and Venice, as well as local places, and I know her from when she lived in South Africa, and she was here about 18 months ago, and also in Australia. Therefore, I have to ask, is the NHS really so badly treated as they would have the outsider believe?
My daughter works for the NHS, is well paid and has lots of holidays.
I had to go to hospital recently when I thought I'd had a TIA. The many tests I had and care was absolutely amazing - first class. Just wish they could be so thorough with other medical problems.
I have never heard of anyone being restricted access to a cardiologist simply because they’ve already seen one in the past 2 years. That’s quite shocking.
The GP has been clear she doesn’t know what is causing the palpitations and you say these are occurring independently of the Afib? I think I’d be questioning the reliability of Fitbit notifications as Afib and palpitations would normally go hand in hand. But palpitations can also be triggered by imbalances in the thyroid system and parathyroid, it’s all so complex which is why you need specialist help.
I do know you have a right to some kind of explanation and clarity if nothing else, and clearly the GP doesn’t wish to commit to an opinion. With your heart history it seems reasonable therefore to be requesting a cardio appointment so Czech Mate is right. Give the BHF a call and ask for help in taking this forward. And the Thyroid UK forum seems very helpful too.
I’d also be inclined to request a second opinion. This can really turn things around if you go in with all the facts and leave your frustration at the door. Wishing you strength, comfort, hope and a successful outcome.
Very sorry to read of your distress. I agree about the state of the NHS .... and have you noticed how the two major political parties never discuss it in their TV debates with news presenters ... !
I don't suppose you could scratch the money together for a private consultation with a totally different cardiologist who practices nearby to where you are. I am not sure - maybe other wise peeps on here could advise - but I didn't think you needed a referal from your GP for that. Just a thought that's all.
I used a different approach on one occasion about my local Hospital Trust and made a formal complaint about Ageism and shoddy treatment about Cataract surgery. Well I didn't even get shoddy treatment, I got no treatment - despite having had a preop assessment. I made my formal complaint, (and as far as I could, I also named names), to my MP with the request that the matter be referred to the Secretary of State for Health for investigation. In this complaint I mentioned I was a bus driver who needed good eyesight to pass his forcoming medical for licence renewal.
Boy oh boy - did that get a change in attitude. Sorted in a flash!
I have experienced ageism, when this cataract business cropped up I was around 73 ... there was almost an attitude - like - "well he's 73 he shouldn't be driving buses at that age, should be at home with his feet up ". I tell you I really did go to town. I'm 79 now and still drive buses ( part time 30 hours a week) and that I can do this means I'm still fit enough ( generally speaking) to pass my annual medicals for DVLA and keep out of the clutches of the NHS.
Not much help to you I know but I thought I'd mention the avenue I took which are available to people. However, with your medical history I feel you should be under the care of some Cardiologist who is top of their trade, not the rats and mice of their trade. Forget GP's, they are only generalists ... 'office wallahs'.
Singwell, it's sad but true. My surgery is already skating on thin ice as a result of unfavourable reviews by the Care Quality Commission. If I have too many more problems getting appropriate arthritic pain care that's the direction I'll go down.
Oh no. I felt like that after stroke with rapid persistent AF NO follow up. Also had Ca Thyroid to deal with. 4 mths later Thyroidectomy (19mm carcinoma right lobe & minimal in left lobe with 12 right side lymph nodes removed (2 infected).
Your TSH should be kept at between 1.5-2.5.
I take 125mg Synthroid. (comes in locked container, with expiry date, anti-humidity capsule inside), kiddie lock. I don't drop like I did the bulk ones also they weren't reliable. You take them early morning with no food for hour. With water.
Then I take my AF pill Diltiazem 120mg another without food.
I take Bisoprolol 2.5mg PM (BB separated from above CCB)
It is important when and how you take them.
Then PRADAXA 110 x twice day later 10am and 10pm. With fruit and water.
Try this regime and see an improvement.
I know your feeling as I was left uncontrolled.
I went to a priv H/Specialist and he was interested in me and my diagnosis.
So sorry to read this and to learn that your GP has really shown little interest. I fully appreciate the mess the UK is in right now with the Health Service however this is unacceptable as is the fact that once fitted with the Stent said cardiologist discharged you. Who was it that put you on Amnioderone in the first place, I am surmising it was a cardiologist? If it was me, I would do one of two things, either insist that your GP refers you to a cardiologist or Cardiology specific nurse practitioner, working with a cardiology department, or contact the secretary of the cardiologist you saw originally and request a further appointment. If all else fails, the next time you have any episode relating to your heart ring for an ambulance, as a heart patient you should get priority. There is an alternative to both, if you can afford it, book an appointment privately with a good cardiologist in your area, it will cost you a couple of hundred pounds, he/she can then advise and treat and refer you back into the NHS system. Please don't even think of giving up, put your big girl knickers on and stand up for yourself, refuse to be ignored! Good luck xx
Who put you on the Amiodorone? It won't have been your GP. Can you not be referred back to that person?
I too am hypothyroid. Are you now taking medication for that? If so, the palpitations and AF might be a side effect of the levothyroxine. It certainly increases the metabolic rate and can cause palpitations. I had to go super slow with uploading my levothyroxine- it's taken me 11 months to get to 75mcg. I started getting palpitations about a month after taking even 12.5mcg of levothyroxine. Occasionally I'd take a 1/4 pill and took it really slowly. Luckily my GP was very supportive and I'm doing well now.
So, my suggestion is to look at the interaction between the thyroid treatment and the heart. Not saying you should come off the levothyroxine - if you're hyperthyroid you need it and mustn't leave it. Talk to your GP and if appropriate go buy yourself a pill.cutter.
Sorry for late reply Singwell. You so kindly asked, "Who put you on Amiodarone" it's long story and I don't have the mental capacity to answer the question just now. A previous post of mine titled 'Prescribed Flecanide: Worse AFib attack ever' explains why I ended up on Amiodarone. It's a travesty really. If you decide to read my post you may understand why I am loosing the will to carry on.
Just read your bio surprised to see that your TSH level was 11.9. Eight weeks after stopping Amiodarone an doing retest, my TSH was 11.9, T4 12, T3 3.5.abysmal numbers, but I did not have any AFib attacks even with such low numbers. Post test, levo dose was 50mcg alternative days. ( don't have a thyroid). When I got these results, I panicked and increased levo dose to 50mcg daily.
Having read your post I have come to realise that increase I made was too high. About 4wks after levo increase crazy, long lasting palpitations (no afib recordings/notifications) started on 13 November. Since, then it's progresse, now having severe AFib attacks....! I might have to reduce the 50 levo increase to 25. Hopefully, in time AFib will take more of a back seat.
Really do appreciate your reply. Without it I don't think I would have been able to connect the dots. Like yourself, suspect that I will have increase levo very slowly indeed.
Oh I'm so glad it's helped. I wish our GPs would join up the dots. I had to cut my 25mcg I half for the first 2 months. I then bit off half of the other half to increase around 6mcg. The levothyroxine has a 7 day half life, so it builds up in the body. As I got closer (after after a year) to my likely optimal dose, I had to take less one or two days a week to avoid the build up. A lot of people in the thyroid forum manage their levels this way too. Hope things settle down for you. It's so distressing isn't it? But you do need to fix the thyroid levels.
Are you on the thyroid forum? Might be worth joining. They've been helpful to me, even though initial I was 'told off' for cutting my dose in half when it was already so small. But they're u9 to speed now with heart interactions
Hello Dizzy, dont even think of giving up, I have experienced a very low part in my life, saved by my mother who gave me a good talking to, bless her.
Also been through the AF route with the end result of a pacemaker, life back to as normal as it can be at 78.
It may be worth you considering going to A&E just saying that you feel ill and unwell, chest pains etc and you may be put through a series of tests that may inicate a route forward. I did this once and found them very helpfull.
I live in Weston Super Mare with a hospital and of course Bristol has a super Heart Department.
As said earlier in replies, "Go for it" let no one stop you, its your right to be treated
I am sorry you are feeling so unwell and really understand your frustration.I personally would not trust Fitbit readings although it did indicate AF when I was persistent.I would invest in a Kardia or the one I use called emay pm20.You can send readings to your Gp.
I also use an app called Fibricheck.3 day free trial with reports.Expensive monthly cost if you want reports each reading but 5.49 a month if you just want readings.
I would question the refusal to refer you within 2 years and write to your practice manager and ask them to show you official guide lines.
Thank you katz. Yes fitbit is not ideal but mine always notified me not long after irregular arrhythmia starts. Could always get AFib reading or NSR on fitbit device. Bought a kardia not long after being diagnosed with afib. Never managed to get a single reading of any sort on it.
Which Fitbit were you using ? Mine would only record afib during the night? do you mean the Kardia just didn't catch an afib episode.I was persistent so my emay showed arrythmia or Atrial fibrillation constantly.when in ablation recovery palps showed as premature beats or missed beats.
I’m sorry to read of your situation, sadly your follow up situation is not uncommon, having experienced similar experience.
Just a thought, does your cardiology dept have an Arythmia Nurse team? I have been advised by my pacemaker clinic to contact them if I have any issues or concerns. May be worth looking into and contacting them for advice. Best of luck.
Try to stay positive I know it's easier said than done, I'd force a GP appointment if you can ive got to the point now where I just walk into the surgery and physically force an appointment. I've been down the thyroid amioderone road and it took me a good six months to get it somewhere near. Palpations vary especially with stress but for me the breathing exercises suggested on this forum did help . Keep pushing for answers and please keep faith and don't give up.
Do you still have your thyroid? I don't....had a thyroidectomy over 30 years ago. Did you come off the Amiodarone due to it messing with your thyroid levels of are you still taking it? Amiodarone pushed my levels over range even after levo reductions...endocrinologist advised I stop taking it. Yes palpitations are triggered by stress which is why I unable to confront health care providers and fight for appropriate care.
Contact the secretary of the cardiologist you last saw, even if they have discharged you. Tell her what’s happening and how worried you are. They may well get you in for another appointment.
After he done stent (50% blockage) few weeks later found out that he discharged me??
I was still on trolley in theatre he said, "I don't know if this will help your AFib or not Mrs ............". Have no idea what he meant by that remark?
The main reason I got to see him in the first place was because of afib.
Do you think it would be a good idea to ask his secretary for a written explanation as to why I was discharged after stent procedure?
DizzyD - Get your boxing gloves back on and fight like hell - get back to GP and demand a referral to Cardiology - if that fails ask for a complaint form - we have so much passion for the NHS but do not complain enough when things aren’t done as they should. Get a complaint registered and if this doesn’t change the result book a private consultation which will be £200-250 and doesn’t mean you’re opting out of NHS treatment - Good luck I know this isn’t easy!!
Thanks MWIC for reply. Totally get where you are coming from and appreciate your advice. Wish I was well enough to put it into practice. Thing is the stress involved in having to fight literally triggers AFib so I avoid confrontation as much possible now. Will get a complaint form (if there is such a thing) from GP practise though.
The good news is today I am living in the AFib solution, rather than problem caused by lack of care and support in NHS. I have contacted Liverpool Heart Chest Hospital for private consultation with cardiothorasic surgeon hopefully to get mini maze procedure done to stop afib. Fingers crossed I don't have to wait too long for appointment.
Procedure going to cost £30,000 or over. Just hope I am a suitable candidate considering other heart problems.
Fingers crossed for you - very frustrating and agree it’s not what you need when you feel unwell- I’m waiting for an ablation since March but still no sign or hint of a date - get an episode of AFib now every 2-3 days so understand it’s not an easy task to keep positive but you have to and keep as stress-free as you can
I'm pretty sure your GP Is wrong; you can be referred back to your cardiologist if there are problems. IF it happens again ring 111. I had a massive bout of ectopics a few months ago. They were so bad my BP monitor couldn't get a reading. I rang 111 who sent out an ambulance. The paramedics of course did an ECG and left me hooked up to it as they were so taken aback by how erratic it was. It meant many hours in A&E but I was admitted for 4 days to be monitored. I was discharged but since then my GP has been in touch with him a few times when I had problems with the tablets I was given.
Hi Dizzy, I feel you. I felt the same many times in my AF journey, my real disease has been the health system both private and NHS. Last week I flew to italy to get a cardioversion, which says a lot. I made a complaint about my GP to the health board and since that I received a bit of medical attention from GP. I'm about to write to my local MP about A&E not treating me.
I found a lot of help from the British Heart Foundation nurse phone line, they have been the only people always there for me in the UK. I have another cardiologist in Italy which answers to my emails within few hours whatever the day. But all of this has really put me in financial strain and I don't know if I can sustain it long term.
I don't understand why everyone is accepting not receiving life saving medical care and why we are not all complaining and campaigning in the streets. I took a picture of myself in the airplane toilet showing the burned sign of the electrode on my chest. My friends want me to move to Italy because they are truly concerned for my welfare in the UK. This is my country too and I feel ashamed. Somedays I want to give up but most of the days I wish there were more people speaking up and stand their ground.
So sorry DizzyD, your last statement might be the clue you need to look into. I have recently been listening to a series of podcast where these two medical students and researchers talked about how thyroid function can cause heart issues and high blood pressure. Maybe that is something to look into. Plus I have often thought that our liver health is another contributing factor to the Afib and irregular heart beat. Just my thoughts.
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