My first visit to a cardiologist; not a success

[24yearsandcounting]

I have had Afib for years now; 25 at least, so I know my own heart and what it feels like. I had an ECG in 1994 and they said that ‘they could see it happening but there was nothing wrong with me’. So I battled on and ignored it as best I could.

In April 2017 I was finally – officially – diagnosed with Afib and put on Bisoporol and Warfarin, both of which I tolerated well. The Bisoporol calmed the worst of the lumpy heartbeat, but I still felt very tired, and (evidently) I still have a fast heartbeat. My G.P. told me to reduce my thyroxine to get the heart rate down. He made an appointment for me to see a cardio specialist at the Norfolk and Norwich University Hospital. My last question was, ‘is he a plumber or an electrician?’. He told me, ‘Electrician.’

He wasn’t.

It didn’t go well.

He wouldn't listen to anything I said about my condition prior to the ‘proper’ diagnosis in April last year; he poo-pooed the idea that I had suffered for years. Saying that I had probably ‘noticed a few ectopic beats’ He wearily endured my tale about air hunger that left me so frightened that I had to empty my bowels instantly on the lawn.

He ‘couldn't find’ the notes from 1994, and barely looked at the results of the ECG and echo-scan thing that I had that morning. He certainly didn't show them to me, nor did he explain anything about it.

He has given me a script for some more pills – Digoxin – which he very carefully explained were extracted from foxgloves!

And he wants me to reduce my thyroxine, which I did a couple of months ago and started falling asleep all the time, so I said ‘I will have to keep a sleep-diary’ and he said ‘you are probably not sleeping well because of the erratic heartbeat’ !! NOT SLEEPING WELL? I could turn it into an Olympic sport. They don’t listen do they?

He didn’t particularly show any interest in the fact that my brother had Afib and has been booked for ablation, cardioversion et al.

He ate his biscuits (yes, really) and let me talk.

I explained that I probably only had 25 years left (I am 70) and I wanted to live them as well as possible; I had endured ME / CFS for maybe 10 years, and I am getting fed up of being ill.

I haven’t even collected my prescription for the Digoxin, but I have started taking magnesium in a last-ditch attempt to improve matters. Any advice on that would be really appreciated.

Have I been short-changed here?

I wonder if I should go out and buy a pace-maker and fit it myself.

24yearsandcounting

[Hennerton]

I think a lot of your problems are coming from being under medicated on your thyroxine. How long have you been taking it? If you post your most recent blood tests on the HealthUnlocked Thyroid UK site, members can advise. Your mention of air hunger and sleeping a lot are typical of thyroid being low. It will also affect every organ and cell in your body, including your heart but is misunderstood by many doctors. They have half a day of training in medical school on thyroid, which is not enough to teach them a highly complicated subject. Most GPs are thoroughly confused between T4 and T3 so you need to become your own doctor in this respect. (I had to explain it to a new junior doctor at my practice a few weeks ago).

[soberhoumom in reply to Hennerton]

I see an endocrinologist for my thyroid because they know there are at least four components to testing for hypothyroidism. Also many of the meds for A-Fib interfere with the thyroids ability to function.

[meadfoot]

I hear you and empathise. I had a similar such experience with a gastroenterologist last year, he was worse than useless. Paid £200 for the privilege then saw him on NHS a month later and he had no idea who I was and I had to explain everything again,. He was dreadful. I now have to see him again and although I have asked to see someone else I am asked to give him one last chance and if I still don't get assistance tell him I don't want to see him again. In the meantime my health continues to plummet. I will tell him alright, to his face and in no uncertain terms. I will be speaking with Pals at my hospital and will not tolerate lack of care from him any longer.

I agree you need to keep your thyroid in check as it can affect everything. Why don't you go to your GP and insist on seeing a proper EP who has a good reputation and will actually listen to you, even if you have to travel to another hospital to get the care you deserve. I really do despair about some medics who we are referred too, experts, well I wonder. Find yourself a good medic and life can be transformed,

[24yearsandcounting in reply to meadfoot]

Hi Meadfoot; yes, when i have calmed down i will go back to my GP (Dr Marmite) and try to find out a few things - like why he sent me to a plumber instead of an electrician: what a waste of a day! thanks for your advice. Su

[Finvola]

He ate his biscuits . . .

Says it all to me. Dismissive, unprofessional and patronising - I feel for you.

I agree with the previous posters and you need to go back to your GP for a referral to a competent EP. Can you research in your nearest hospitals and pick one with a good reputation?

Best wishes, sometimes we do need to fight our corner hard.

[24yearsandcounting in reply to Finvola]

Hi Finvola; you are right about having to fight our corner; trouble is we are ill, and not medically trained; they are generally male and fit and well and THINK they know all the answers. Having waded through the morass of CFS for years, i get a bit disillusioned. I will take you all with me (in my mind) when i go to see the GP. Watch-out Dr Marmite, i am making notes.

[hock217 in reply to Finvola]

I'm in N.Y.. we do surveys for Doctors, Hospitals etc and they can be seen by all. Even this does not improve NOT CARING.

[Hidden]

Amazing. Your cardiologist sounds like a complete 'joke'. As meadfoot has said....you need to get back to your GP and ask to see a proper EP. It is all so upsetting when one is treated in such a patronising manner, not to say plain rude.

Do let us know how you get on.

Best wishes

Sandra

[24yearsandcounting in reply to Hidden]

Thanks Sandra; part of me wants to forget the whole idea of seeing medical professionals; don't they realise what a lot of expectations and hope walk through their door, and what a confidence crusher their attitude can be, and not just for a while either, the effect can last years. but i am optimistic; i have started taking magnesium to see if it really works; i haven't taken his digoxin or altered anything else, i just want to give magnesium a try. I will report back later. thanks for the post. Su

[Hidden in reply to 24yearsandcounting]

Su, I found taking magnesium taurate made an immediate difference to my frequent bouts of tachycardia . They haven't disappeared but are much less frequent .

[Janith in reply to Hidden]

Same here ... make sure it’s taurate!

[hock217 in reply to 24yearsandcounting]

A movie called "The Doctor" with William hurt came out in the 80's. Google it. I think you might like it.

[dizzielizzie1]

Hi there, I do feel for you. It's not nice to feel that you're not being listened to, by experts, who are supposed to be there to help. I am only taking Apixaban, Losartan , magnesium and a small dose of iodine( too much is bad for you) and my heart hasn't missed as much as one beat since I started taking it( iodine) two months ago. I see you take warfarin. Didn't your GP offer you one of the newer anti-coagulants--that would make life a little easier for you as you wouldn't have to keep having your INR tested. Good luck with everything.

[24yearsandcounting in reply to dizzielizzie1]

Hi Dizzie; i am very glad you replied to my post; you say you are taking magnesium, this is something i have just started on after doing lots of research on-line and finding suggestions on this forum. i will let you know how it goes. I really wish that NHS doctors knew more about vitamins, minerals and trace elements; they are too quick to give you nice fat expensive drugs, and whip out their scalpels! As to the anti-coagulants, I was in such a state of frustration and anger when i was finally diagnosed after suffering for 24 years (and it was a little female nurse who spotted my syncopated pulse) that i chose wafarin over the others. when the doctor hurled three long preparation names at me with Warfarin tagged on at the end, i chose Warfarin because it was the only one i have ever heard of. But at least i get to see a nurse regularly without a three-week break, and they are more approachable than doctors. thanks again.

[Hennerton]

Can anyone tell me why members post a question asking for help and then completely ignore all the posts and give no thanks for all the advice so kindly given? Sorry but feeling very grumpy about it thIs morning.

[24yearsandcounting in reply to Hennerton]

there! half a dozen replies all done in the precious quiet time before the advent of husband, cat, phone and all the rest that constitutes my day. I get grumpy too. It's hard work being ill.

best wishes, and good health to you all.

[24yearsandcounting]

HEY, SORRY! i was glad of the replies and thank you all very much; i was going to sit in the quiet of this morning and reply to each one individually. i am tremendously boosted by everything that has been said. As to my thyroxine levels - in 1989 i was on 300 microgrammes, which is a lot, but my doctor prescribed it so who was I to argue: but i felt hyper, and driven so i reduced the dose (gradually) to 200 and have been on that ever since. My TSH is low, which indicates that the thyroxine is still high-ish.

my journey continues.

[Hennerton in reply to 24yearsandcounting]

Not necessarily good that your TSH is low and thyroxine high unless you also know from a blood test that you are converting well and that your free T3 is good.

[24yearsandcounting in reply to Hennerton]

Thanks again; nearly 30 years on 200 microgrammes, with at least four GPs quite happy with it tells me i can leave it as it is for a while. I only ever change one thing at a time, otherwise I can't tell which alteration improved matters.

[Hennerton in reply to 24yearsandcounting]

I was not suggesting you change anything but simply flagging up the huge effect low thyroid levels of T3 have on the heart and suggesting you have a full thyroid test to see exactly where your levels are. Only then will you know if those four doctors know anything about thyroid matters - sadly, highly unlikely. Knowledge is power.

[Mike11]

I think this highlights that you should always check who you are being referred to by your GP and challenge it if incorrect. Details of every doctor's skills are online now so it's very easy.

I've just had a similar thing where both GP and my insurance company continually tried to refer me to a neurologist rather than a neurological surgeon for a non AF problem, even though another consultant had given them the name of the exact person I need to see. Fortunately I got it sorted and am seeing him this afternoon !

[24yearsandcounting in reply to Mike11]

isn't hindsight a wonderful thing? I am such an innocent i believed all i was told. My doctor, and the specialist both told me that the results of the 24 hour monitor test I had done in 1994 would not have been kept, so there was no way to do a comparison. Now i am told by a Doctor friend that they save your notes until you die! does anyone know what the truth is?

I hope your visit to the neuro-surgeon went well; it's so uplifting when it does.

thanks for the reply.

Su

[Mike11 in reply to 24yearsandcounting]

Unfortunately there's only a legal requirement to keep notes for seven years so it's hit and miss after that. I know the echos I had after my heart bypass no longer exist.

Neuro-surgeon has referred me for an MRI on my neck so we'll see.

[24yearsandcounting in reply to Mike11]

That's cheered me up no end! but thanks for the reply, Mike11.

su

[hock217 in reply to 24yearsandcounting]

Can you get copies when results are in? I get copies of my blood work and N.Y. Presbyterian Queens has patient portals where you can view all hospital notes once you sign up and are given a long, secure password.

[24yearsandcounting in reply to hock217]

Actually i am in the good old UK, and i can inspect my results; they don't make it easy, but i can access them.

[OlderDownUnder]

Magnesium OXIDE is the least useful - generally - but the cheapest form. Consensus seems to be around taking more than one type. Mg threonate is another one worth looking into.

Agree. You need to learn and become competent in YOUR condition. And don't be afraid of calling them out when they're behaving without manners.

- At least he might have offered you a biscuit !

[24yearsandcounting in reply to OlderDownUnder]

Oh I love your comment about him offering me a biscuit! As to the magnesium, i grabbed the first one i saw in the pharmacy: It is Mg Citrate 125 mg, and i take 2 a day at a different time from all the other pills. i want to give it a fair trial before taking the Digoxin that biscuit-eater gave me, and before i reduce my thyroxine. Am I taking enough of the Magnesium?

i shall buy threonate if i see it, or at least find something different. Years ago i heard that Dolomite is best as it has calcium and mg in the correct proportions. I shall look into that.

thanks for the advice. Onwards and upwards!!

[OlderDownUnder in reply to 24yearsandcounting]

Yes, I think that would be plenty. Citrate is a good choice for "bio-availability", with "oxide" being the least, but not that it REALLY matters!

I take the view that ANY intake must benefit the person if they have any level of deficiency in their (food) diet. Our soils have been greatly depleted of natural minerals etc since the 1930's when mechanized farming and intensive cultivation regimes became the norm. Food grown in these soils are thus 'deficient'.

Bottom line for me is the Recommended Daily Allowance of all vitamins is very, very conservative and is the amount needed to keep obvious symptoms at bay, with vit.C being the best example.

The more you take...the more it co$ts, which limits me !

[24yearsandcounting in reply to OlderDownUnder]

Hi 'Older..' i have given up booze, and cakes, and biscuits, and sweets, and real butter, and most cheese in order to loose weight, reduce my diabetic score and get my cholesterol down, so i have plenty of spare money to flash around on supplements and having a great time!! (Sarcasm there btw.) i am willing to spend whatever it takes - within reason.

thanks for the reply.

[OlderDownUnder in reply to 24yearsandcounting]

.. (Sorry, I tend to start with the latest email and work downwards...)

And what have you replaced butter with ? Please don't tell me it's "margarine" !!!

Go back to butter. Coconut oil is your best all-rounder, followed by cold-pressed olive oil. Eat 'Brie' cheese, - for a good source of vitamin k2. Tastes nice as well.

Give up the CARBOHYDRATES !!! You don't need them. Keep your protein "moderate" and eat FAT. If you find your protein intake is too high, cut the fat off your bacon and eat it. - throw away the bacon !

Carbs drive glucose production which in turn drives up Insulin to huge levels..then the body gets fed up with such amounts...and protects itself by ignoring it.

a.k.a. "insulin resistance = Diabetes 2. Then CVD.

[24yearsandcounting in reply to OlderDownUnder]

hello again! yes i bought olive oil marge as it tastes of nothing. 250 gr lasts me a month. The trouble with real butter is that we get through so much of it. i use olive oil for everything else, and sesame oil when i get tired of olive oil. Yes i have reduced carbs down to a minimum, we eat LOADS of veg and fruit, and wholemeal bread - 2 slices a day for me. and stinky fish, mackerel and pilchards. i have lost almost 2 stone so I must be doing something right.

(i wish this website would automatically capitalise i )

[Janith]

The magnesium should help. See a different cardio.

[24yearsandcounting in reply to Janith]

Hi

I am working on seeing a proper electro physiologist; but i want to give th magnesium a proper trial. I wonder how long i should give it, and what strength pills?

[Janith in reply to 24yearsandcounting]

I take pure magnesium taurate ... Vital Biologics ... it’s a powder ... they provide you with a small measuring scoop. I also take magnesium citrate in powder form ... just a pinch ... keeps my gi tract in proper order. I order through Amazon (US) ...Vital Biologics also sell directly. Also, l have been taking both from the start ... approximately two years ago ... immediate relief. I have had two afib attacks in two years. Mix the powder in tea, coffee or juice. I use tea.

[24yearsandcounting in reply to Janith]

I didn't know you could get powder; my citrate pills are enormous and take quite a bit of swallowing. i understand that you can get oil to rub on your skin, and take it in transdermally. More research methinks.

thanks for the advice, Janith.

[Janith in reply to 24yearsandcounting]

I have the oil as well ... l use it on occasion on the bottoms of my feet! It peels off any rough areas ... also Epson salts baths ... it contains magnesium.

[OlderDownUnder in reply to Janith]

YES !

(Any excuse to take more (epsom) 'salt' baths is a Good One !!!

[24yearsandcounting in reply to OlderDownUnder]

well I wish i could take baths; getting in is no problem, but getting out requires at least three fit able blokes to heave me out! i dont suppose a salt shower would have the same effect? My mother used to use Epsom salts to stick on home-made xmas cards as glitter!!

thanks Older and Janith

[OlderDownUnder in reply to 24yearsandcounting]

Well, I'm going to be a bit impolite and suggest a shift to 'Low-carb/High fat' dietary style which will... over time... reduce the barrier to you climbing out of a bathtub unaided...

Not only but also, this will bring your diabetes under control and will eventually put it in remission, and slow down CVD which is the bedmate of T2 Diabetes.

It will also make your coronary arteries last longer !

[hock217 in reply to Janith]

Don't you love Amazon....about two yrs ago their stock was down to $400. Went online and it was near $500 so I waited. Big mistake. Not my area of smarts. I do love them and am a Prime member.

[Janith in reply to hock217]

Super ... you can buy everything on Amazon ... l take it you are in US?

[24yearsandcounting in reply to Janith]

no, good old England with its good old NHS.

[OlderDownUnder in reply to 24yearsandcounting]

... You mean the good old NHS that is fast going broke...coping with chronic, 'life-style' diseases ???

[24yearsandcounting in reply to OlderDownUnder]

Yes, the good old NHS that is now refusing to do unnecessary operations like breast reduction (my god, have they any idea how painful big breasts can be?) but they are happy to continue gender reassignment which they even have to reverse when the individual finds it not to their liking. And tattoo removal. grrrrrrrrrrrrrr!

[OlderDownUnder in reply to 24yearsandcounting]

... But I bet they so breast enhancements...

[24yearsandcounting in reply to OlderDownUnder]

well, they have to get their priorities right!

[Cas33]

Now, I’ve been down the same route as you, I’m 60years old.

My AFib came on with a vengeance last year Feb time.

I had every single test you can think of. Five Cardioversion. In Five months.

Two Ablations.

It all came to a head this year in Feb when my specialist/ Cardiologist sujested yet another Cardioversion, while I awaited surgery for a pacemaker, he put me on loads of Degoxine which did keep me stable in the six weeks I had to Waite for the pacemaker to settle down . the later I had on May 7th then June 22 an A V Node Ablation.

He has told me there is no cure, but I hopefully will have a better quality of life .

[24yearsandcounting in reply to Cas33]

My goodness, after 5 cardioversions an 2 ablations I wish you all the best of luck with the pacemaker, you say you are 60, well despite the youthful photo of me, i am now 70. I told the specialist that i only have 25 years left, and i want to make the most of them.

[hock217 in reply to 24yearsandcounting]

I love that you clearly defined your expected life span to him.

[OlderDownUnder in reply to hock217]

25 'GOOD' years... Stick around long enough to annoy your cardio's successor.

[24yearsandcounting in reply to hock217]

but he didn't bat an eyelid, or ask why i believed it. My family all live to to their mid-nineties.