I am new here as I think I have AF and potentially other things going on and I'm hoping you may be able to shed some light on my symptoms and whether they're typical of AF. I do apologise for the length of the post, there is however a bit of a backstory.
I am 29, I have Hashimotos thyroiditis and have suffered a few years of palpitations. They take various forms, some pvcs, pacs, an irregular washing machine type palp that lasts a few seconds and a fast heart rate on minimal exertion.
In May I went to see a cardiologist who did a VERY quick echo (no abnormalities found but was so quick) and a 7 day holter. Nothing showed on it except multifocal ventricular ectopics and isolated SVts. I didn't feel anything out of the ordinary while it was on (typical). I was discharged with a Kardia smartphone monitor and told it was 'stress'.
Things have got a lot worse since. While driving two months ago my heart started banging really fast and I felt like I was losing consciousness. I chalked it up to stress but was rather uneasy with it. After seeing the GP she once again reassured me it was stress.
This incident happened again while driving, I struggled to find a heartbeat in my neck and then my heart went boom boom boom for about five seconds and I felt lightheaded again. I pulled over and then went to the nearest hospital. Nothing out of the ordinary on the ecg there so they sent me home.
Since then, I've been having constant palpitations, especially if I've eaten anything sugary or fatty. I have a healthy diet although due to moving house ordered a pizza and had to stop eating it. My heart was going boom boom (long pause) boom boom boom (long pause). I went to the GP who was going to do an arrythmia clinic referral. Yet to be seen.
Then, on Thursday night just gone, I'd had a bite of my partner's pudding while lying on the sofa. Within a couple of minutes my heart did a very odd quivering thing, almost like it was shaking jelly. I've had this before but for nowhere near as long. I felt the pulse in my neck and that too was quivering. I felt scared and went to bed to sleep it off.
On Friday I woke up feeling super tired and didn't manage to do anything all day other than lie on the sofa. At about 5pm I got up to sort some washing out and felt lightheaded and that my heart was funny. I wasn't as lightheaded as I was during the driving episodes (during which I felt like a plug had been unplugged and i was on my way) but I still felt I needed to lie down. Before I did that though, I used my Kardia monitor to check my heart. To my shock it said 'possible AF.'
I tested it again five minutes later to ensure it wasn't an inaccurate reading, and once again it said 'possible AF'. Off to hospital I went, feeling sick, lightheaded and completely out of sorts. The funny beating was chugging along all the while in the waiting room, I had a cup of cold water and by the time I had my ECG the funny beating had stopped. Great.
I showed the doc the ECG recordings my Kardia monitor did and she said they definitely looked irregular but as THEIR ecg was ok and whatever was happening had stopped, I could go home. They have set me up a fast track appt with a cardiologist next week.
I'm now at home and getting 'normal' readings on my Kardia monitor. I do feel tired and out of sorts and have a bit of chest pain. I have felt very tired over the last couple of months and get out of breath doing very simple things.
My great grandmother had a cardiac arrest in her early 40s and my mother gets all kinds of odd palps that she 'never has time' to get checked out. My 16 month old daughter was born with coarctation of the aorta and a very rare heart condition called hypoplastic left heart syndrome.
So, I suppose I'm wondering the following:
1) Does all of this sound like AF? And the random heart quivering?
2) Can AF or atrial flutter make you pass out all of a sudden? I'm referring to the boom boom boom almost pass out situation I have experienced driving...rather than the lightheadedness I felt on Friday's much longer episode of supposed AF
3) How on earth could I have AF at 29?
4) What should I be asking the cardiologist for when I see them next week?
Obviously I'm not driving at the moment - I'm too scared to! The sudden episode of fast palpitations and near blacking out has scared me silly.
Thanks so much for any thoughts or advice. I'm so worried something is going to happen suddenly and I'm not going to be here for my daughter who really needs me. x
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jellybean000
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Oh jellybean how awful for you. I think you should push to see, preferably, an electro physiologist who is a cardiologist specialising in heart rhythm issues. I have very similar symptoms to you. They come and go known as paroxysmal for that reason and have taken me to hospital many times.
You need a full overhaul by a specialist to get to the bottom of your issues. Try not to panic they will get to the bottom of it for you. You say you have been fast tracked which is good.
People can have af at an early age. I would mention your mums symptoms, your gran and your daughters issues so they can look at any familial link. I would ensure you write down your symptoms and frequency as you have listed in your post. Are you taking someone with you as it helps to have two people to listen and question. Hopefully you will be given lots of tests post consultation so they can get a full picture.
Once you get a diagnosis you will feel better as a treatment plan will be devised and you can get back on track and resume your life.
Thanks so much, it's reassuring to hear that others suffer from the same symptoms. It's just horrid isn't it. I will be taking my partner as when I'm nervous information quite often goes in one ear and out of the other! Have you almost passed out too?
My partner looked up afib and said 'don't worry it's really common'. Not helpful as when it's happening you feel absolutely horrid! He was actually trying to be reassuring.
Yes I almost pass out. It goes on and on for hours. I also get terrible chest pain. Medics say of af that it won't kill you which is reassuring. However while going through it it's terribly frightening I agree.
Get a full diagnosis then you will be offered the best treatment. Chin up you will get back on track.
Have you looked at the afa website there is lots of sound, helpful information there to assist you in getting to grips with things.
It may be common but many of those are either asymptomatic or only have very mild sympathy. They are the ones most at risk of strokes and 60% of the major / fatal strokes are people with AF.
Yes I definitely will. I have been following these threads for a while and an unfinished story drives me mad! I will definitely mention thyroid issues to the cardiologist too.
jellybean000 Hashimoto's is an autoimmune disease--so this implies you may have other immune system triggers. For ex. should you exclude gluten??? Gluten, if you are sensitive, intolerant of it or have an autoimmune response to it--can cause all sorts of abnormal behaviors in various organs. It may be useful to temporarily eliminate it to see what happens, also to see an allergist to get tested for allergies, especially food allergies. Yes, I have also had your creepy symptoms. While driving, having to pull over because I felt I was going to faint. This has also occurred in the middle of a tai chi class, in the middle of shopping with my husband in a store, after teaching 3 classes when I was working, after using asthma meds--it is really sort of horrifying,.
Aside from the gluten and allergy trigger, certain prescription meds can cause afib0------- quinolone class of antibiotics (cipro, levaquin, avalox and---floxins) and large macrolide antibiotics such as biaxin and zithromax; broinchodilators for asthma; also over the counter drugs (most of them).
SEE an electro physiologist. He is the most knowledgable and can help you. If you have abnormal ekg on the holter monitor but happen to be normal during the brief ekg in the offixc e this still means you have something abnormal going on and should be addressed. Feel better. Try not to aggravate yourself worrying, there is a solution to your problem.
Hi, I have had all the symptoms you describe but at my age and after investigation and treatment I have come to accept that my heart's electrics are frayed and I can usually ignore the funny feelings. But at your age and in your situation I couldn't and wouldn't so I agree you need to see an EP and hope you either get them sorted or reassurance that they won't have dire consequences 💕
Hi, thanks so much. My last cardiologist virtually laughed in my face when I told him I thought I had AF back in May. I've moved areas now so hopefully a new team will investigate properly. Thank you for your help x
I can see you have had some good advice already. This is a brilliant forum to find advice and info and I have learned so much here.
I don't know if you've already seen it said on this site but the general idea is, cardiologists are the 'plumbers' of the heart, dealing with structure - valves and so on, and electrophysiologists are the 'electricians' of the heart, dealing with how the heart conducts the electrical impulses that make it beat.
So if you have a problem with heart rhythm, the Electrophysiologist (often abbreviated to EP on this site) is the one who can help you and the 'plumber' wouldn't have a clue, because if he can't see it on an echocardiogram it doesn't exist.
Hiya jellybean000 , I can see from your post that you have put the work in to try and understand what is going on with your heart and are being a responsible and proactive patient.
So you may know all this already, but just in case it's helpful:
In case you get brain fog on the day, it's a really good idea to print your questions out on A4 for the EP to glance down and get the gist quickly.
(In fact even if you don't have brain fog on the day it's a great way to get a lot out of the appointment).
A reasonable guideline I've been given is:
If you can, print out a page for each of these:
your symptoms;
a personal medical history;
a family medical history;
and your concerns and questions.
And you can leave a copy with them to refer to. Any decent doctor should be grateful.
An EP is likely to be grateful if you print out some of your Kardia ECG's and bring them to your appointment.
(In fact my GP has urged me to do this!)
The Atrial Fib Association may be able to suggest who would be a good EP in your area, you can ring them on 01789 867 502.
You sound so knowledgeable and your post looks like a great summary, so I am guessing that all that will help you get what you need.
I agree with Boombiddy on writing out lists, on my last visit to A&E for a different situation I had a list of my medical history that I had compiled from old diaries and memory going back as far as I could, I also had my NHS and hospital numbers as well as name age and address. My husband handed it to the doctors who immediatley told him it would save up to an hour of gathering the right records. They photocopied it and it stayed with my file through the week I was in hospital.
I scanned over your article and didn't read any of the comments - so excuse me if i repeat anyone. At your age you must ask to see an electrophysiologist - tell your cardiologist you insist.
All I can add is don't let them bully you stick up for your self they are human and only you know your body. A nd if it's not right you need to know why hope all goes well for you
Hi Jellybean - sending hugs! It does sound like you have AF, it's just like the thing that it disappears the moment someone else tries to measure it. The Alivecor readings will be very helpful though. Try not to worry too much - the symptoms (the banging and quivering) are typical of AF and yes you can feel very poorly. Just ask the cardiologist everything you can think of and keep the pressure on to do something, you do need help with this. But you're really not alone.
Hi Jellybean, sorry to hear of your difficulties. You are on the right track by insisting on you getting properly tested. I have AF since my late teens but like your mother did not follow up on getting tested. Like the medics say, it wont kill you but you will need monitoring if you do have AF. Try to stay calm and ride out the attacks. Tell your mother to please go to her GP. Not getting treatment is bad news. I dont want to scare you but your mothers age is also against her.
Hello everyone. Thank you SO much for taking the time to reply and for your very good advice. I am overwhelmed by your support.
The bit that scares me the most is the two episodes I've had where my heart goes super fast over a five second period (rather than over a few hours like my episode on Friday) and I almost immediately blackout. Shall I explore WPW syndrome? Is there anything else I should be looking out for?
I've obviously been reading things online (perhaps I shouldn't) but I can't find anything to say that normal AF can do this.
Once again many thanks for your kind words. I wish you all good health x
jellybean000, I think you are looking for a reason this is happening to you!! I also think that because it is so scary you get more stressed which in turn can exacerbate the physical aspects.Your family history may also be something that is subconsciously adding to your feelings of despondency. You have a lot going on!! I think from here on in the advise given by the lovely people on this site is a great place to start getting things in perspective. Focusing on all of this will help you be prepared for your next step. You are not alone and you will improve in the longer term with all that's available to you. I used to constantly be chasing reasons as to why this had happened to ME!! I also found that for me I was making things worse by reading to much info. Chin up now, keep us informed
I'd be at the GPs being a bit of a pest until I got things on the move fully. I didn't have to do too much because the AF did the work for me, with passing out and being rushed to hospital by ambulance, many times, which is the main reason for handing back my licence. You wouldn't want to hurt anyone (your baby in particular !!). Having had my licence since 1973, and a motorcycle licence before that, handing it back was a bit upsetting to begin with but I think I did the right thing. Hope you get things sorted out, take care. Dave
Absolutely not. I am determined to get to the bottom of this and have a treatment plan working before I do any driving! That's if they take me seriously this time :0
Good! Another thing, I couldn't afford a Rolls Royce anymore, neither could I afford the insurance, tax, nor, for definite the fuel. I've got a disability bus pass instead. Dave x
Trying to help but this is a bit blunt. My dad used to say you are at where you are at, even though it's not where you thought you'd be. You can only move forwards and you can only look back to help you move forwards.
Genetics probably plays a big part. Certainly write the family health history starting with each set of your grandparents and the their siblings (ie you get two lists). Write their name, how old and if they have died in bold as the heading. (ie JOHN SMITH AGE 53 DIED 1999 - HEART). Then put bullet points underneath with medical conditions starting with oldest to newest. That way it's easiest for consultant. Also include all first cousins. The year of death is quite key because classifications and understanding have changed. For instance my aunt died aged 44 in 1972 from angina except if quite possibly would be that today.
Boombiddy has made some good points re lists but make sure they are all billet points.
Also do implore your mum to get seen ASAP because it can only get worse as time goes on and whatever she had it's better to capture it earlier rather than later (as to my cost I have found out).
If it were me, and I hadn't had any incidents after five days on the monitor, then I would eat that dessert again to see if the effect could be repeated. Note that there are RISKS in doing that but that's my approach from an engineering and analytical perspective. Your choice.
Hi Peter, that's great, thank you for the advice. I may well try the dessert again to see what happens. Been frightened away from coffee though after the driving incidents so have given that up for good. All the best x
I too have had all of the symptoms you are having. I was diagnosed with SVT and PVC/Pac's. When the heart rate would get up to the 240 beats per minute I would almost pass out. I ended up having a cardiac ablation in March 2016 which got rid of the SVT but unfortunately I still have to watch triggers for the PVC/Pac's. My triggers are artificial sweeteners (especially aspartame but sucralose as well). I cannot even chew a piece of gum with aspartame in it without it making my heart go crazy. Also, caffeine, alcohol will do it. I can no longer have any gluten or wheat products because those set it off. Digestive enzymes and even coenzyme q-10 supplements will cause major flip flops, pounding and flutters. I was told that I do not have afib but what I do have can turn to afib later in life. I am 47 and this all started for me about 3 years ago. I am also borderline needing meds for hypothyroid but both levothyroxin and armour meds make the palps unbearable so I don't treat the thyroid other than taking supplements to help it. Check out your thyroid meds as a possible cause too.
Hello, interesting what you say regarding triggers. I've always been quite sure that I have more palpitations after drinking squash! I am sure levothyroxine makes things worse but the doctors just say 'if your TSH is in the normal range then that's fine'. I'm not sure I buy that at all, especially if you have thyroid antibodies. Hey ho. Perhaps we should have been doctors so that we can investigate and treat ourselves! I hope you don't develop afib x
jellybean I looked on some UK gov't web sites. The standard seems to be that if your tsh is above 10 you are normal. That is pure iodiocy. Your dr. and the people deciding the standards of treatment are making a financial decision to same the government money since the UK has a one payor free health care for all system. this is a cost benefit analysis--not a scientific health decision. I would advise you to look on and read the lef.org web site. After you find the total supreme thyroid panel of tests--look for the more information icon, click on that and read about the significance of each test. print out the test list qand the mjore informqaiotn page, and take it somewhere, where an intelligent, enlightened doctor can help you. I would suggest Berlin or Hamburg ,Germany. Do a web search for alternative doctors that are MDs but who specialize in hormones, sexd hormones and thyroid hormones and also do blood tests for nutritional substances, such as D3, Co Q 10, B12, B6-- do you take a multi vit /min supplement with a bit of iodine? Do you take some D3. Have you had your D3 tested it should be around 60
Thank you for your reply. I will look into this further and prod my GP again - I am seeing her on Friday. If she refuses to help I will try and change GPs. I don't take any supplements. I trialled a high strength b12 vitamin once and it gave me the worst heart palpitations ever - that scared me a bit. It was almost as though it threw my thyroid into overdrive! x
jellybean000 see a private doctor in the uk, but first read the website of dr. henry lindner (pa., usa) at hormonerestoration.com take his info plus the test descriptions from lef.org to a private doctor.
I would suggest coming to the USA to see dr. lindner , but he is not accepting new patients as his patient load is really full. He does have international patients. they come to the usa to consult with him and get blood tests. Usually they have friends or relatives in the USA, and they mail his Rx. hormones to them.
Fortunately there is excellent health care available. Unfortunately for your pocket book it will cost $$. Many doctors give excellent amazing health care and opt out of insurance so the insurance company/government (medicare( cannot dictate how they should treat their patients,
. Ex. I had viscotherapy (injection of hylauronic acid joint lubricant)--3 shots into my right shoulder. Excellent results. BUT the fda has approved this only for knees. This procedure works fantastically well on any joint with a synovial lining (producer of natural hyalauronic acid joint lubricant). there fore Medicare (USA) paid for the doctors tests (x-ray, and MRI) and for his services (injecting the supartz, the lidocain(local anesthetic) involed, the nurse who assisted, the sonogram machine he used to guide the injection), but did not pay for the 3 supartz shots.
The regular price is $1000, but I used an Rx. discount company called "goodrx" to get the price cut to $640. Since my pharmacy only had 2 shots, and had to order the stuff I had to pay the $30 fed ex delivery charge.
The original supartz was made by a company in japan, which has an american branch with a different naME; then the supartz is distributed by a company called "smith and nephew" which is originally a british company with a brnach in Massachusetts( USA) with the same name, and the pharmacy gets it from there distributor in Massachusetts who delivers to this specific chain of pharmacies.
It got very complicated and also costly. All this just to be able to move my shoulder and avoid drugs and surgery!!!! and Medicare or any insurance only pays for knees!! Also absurd. By the way WP thyroid will have to be ordered since your pharmacy has never heard of it, but it is not expensive (if you need it( and if you need bio identicqal hormones insurance will NOT pay and also it is not vvery expensive. If you onoly test tsh and treat with symthetic T4--you are missing getting T1, T2, T3; also the converswion of T4 to T3 is not being considered. If reverse T3 is too high this could be implicated in afib. It is a bit complex and all aspects need to be addressed.
Never drink squash! Devil's brew, completely my personal opinion of course, but besides the sweeteners if any it contains preservative which is dangerous for asthmatics and I can't believe does anyone any good! My grandchildren are given very diluted fruit juice if they feel the need for something more tasty than water.
needlestone you can get compounded T4 and T3 with a slow release (methylcellulose added to the T3) the conpounded part means the compounding pharmacist gets the pure drug T4 and T3-- without any othe added excipients, fillers or dyes *which are often the things causing the problem) . the trick is having the doctor determine the correct doses of each T4 and T3 in this compounded med. You usually start very low--have a blood test every 3 weeks for free t4, free t3, tsh and reverse t3 to monitor. the problem with Armour is that although it comes from a natural source in making the tablet the manufacturers include a lot of stuff that is not good for you
Good to know. I will talk to my hormone doctor about this. I am super sensitive to so many things and often wonder how in the world I will make it if I really "need" meds for anything.
Can you get any of that in the UK? I asked my doctor before this last episode if she could test my free t4 levels to see if there's anything funny going on there and she told me no, they only test TSH because that's the only thing they treat. When I asked about alternatives to levothyroxine she told me there aren't any alternatives, only in America?! X
jellybean000 That is outragously terrible!! Treating to tsh is ignorant. You can have subclinical hypothyroidism, with a normal tsh. So, I guess the only things doctors give you is synthetic T4. Oh my g--!!! This is really stupid and scientifically ignorant and backwards.
Look at the web site called LEF.org and click on to their blood test site. Look at the complete thyroid panel. copy this on your printer. Bring it to a Private Doctor. NO WONDER you have all kinds of symptoms and doctors do not know what is going on. I cannot imagine that these tests are not available in the UK> You definately need a different doctor. This one is not too bright. If coming to the USA ias too expensiver, try a doctor in Germany. That is closer to you.
jellybean000try web site for Thyroid UK ( previously ca,,ed thyroid action group and stqarted by Lyn Mynott who suffered for 15 years with incorrectly and undiagnosed hypothuroism. Also see book in Uk titled: THYROID FOR DUMMIES by Alan L. Rubin MD ANF dR. sARAH bREWER also look at UK thyroid info/ simon waters.
Your tsh, whie beuing adequately treated with thyroid hormone , is irrelevant, The Free Ts, Free T3, t total T4, Total T3, r4everse T3, T3 uptake, and the 4 auto antibodies against the thyroid are essebntial. If your reverse T3 is too high it can cause afib . You should also have a blood test for your iodine levels, if it is too low you can have hypothyroidism and also all your other endocrine glands will be functioning abnormally.
My food triggers are cadburys chocolate , any kind of sweeteners, and can only drink 1cup of decaf coffee and only drink decaf tea
I have had paroxysmal AF for 20 years I had my second pacemaker inserted a few years ago Certain foods trigger my AF . Hope you get the answers you need . Write everything down on an A4 sheet and hand it to the cardiologist he will read it and usually asks can they hold on to itgood luck
A pacemaker seems to be used when the heart is pausing for too long, to make it start beating again when it happens. It doesn't actually stop the AF. Meds should slow down and/or decrease or stop the AF. If they don't then an ablation is usually the next step.
PeterWh sotalol does both rate and rhythm and is detoxed through the kidney not the liver so avoids issues with underfunctioning detox liver pathways as per the P450cyp detox system--most adverse drug reactions are caused by uinderfunctioning pahtways in this system.
If you're not doing one already, keeping a symptoms diary might be helpful, to see patterns. It could also help you bring clear succinct info to your doctor.
I know you're really busy as a young Mum, but very short entries are good. "Orange squash 3pm, heart galloping for 30 minutes" even, as it gives a possible trigger, a time and duration, and at least some idea of severity.
Example: Because I have other conditions which require a symptoms diary in order to help me manage fluctuations and variations, this has helped me also see interactions between them and so on. I have to stay well hydrated and record every drink and how much. This helped me realise that getting a bit dehydrated can trigger ectopics, and I can do something about that.
Thank you Jo. I'm not sure if I was getting pauses or not, I iust had four of five seconds of a banging heart and that was that. what you have said makes sense though so thank you for sharing your experience. I'm learning a lot from you guys! X
Oh this resonates.... I have Hashimotos and have had a number of episodes of palpitations recently. I had put it down to my thyroid meds being out of whack the main feeling being a skipped (ectopic beats) that went on for days last week. I have had 24 HR monitor earlier in the yer, been under. Lot of stress so anxiety also in the mix but I don't have fast heart rate just the bumping and thumping described.
Is afib always fast heart rate - my resting heart rate has been low down at 60 throughout which again made me think I was undermedicated and that it was thyroid issue. I am on warfarin for other reasons but still concerned I had 3 ecg's earlier in the year all were OK.
Very little interest or knowledge about thyroid issues it seems when I go to GP my TSH has been all over the place - you can do private blood tests check out Blue Horizon
Apologies for not replying sooner and updating following my cardiology appointment.
As suspected when I arrived the cardiologist went on a diatribe about how young I am and that it would be very unusual for me to have a heart problem. She read through my medical history and symptoms and classed all my palpitations as the same, despite me telling her the very clear differences (missed beats, quivering, fluttering, stop/starting).
She listened to my heart and then said she didn't need to do anything because I'm probably 'one of those people' that is more aware of their own heartbeats. She just suggested an echo. I got quite angry as I am sick of being fobbed off. When I asked for a reveal loop recorder she said no, I didn't need one.
I asked for a second opinion as she was a registrar and in my experience (through my daughter's heart condition) they can be above their station. Off she stormed and minutes later she came in with the consultant cardiologist.
The consultant initially had her back up until I told her about my symptoms, the fact that I'd had lots of holter monitors etc. I told her about my daughter's condition (hypoplastic left heart syndrome) and about the near passing out. Her attitude then changed and she said to do a mini reveal loop recorder implant and an echo. I'm waiting to have these done. Neither the consultant or reg had seen the kardia monitor and they weren't sure how to interpret the ecg print outs I took.
I asked whether they thought the near syncope was worrying and they said because I didn't actually hit the deck it's ok. I thought this was odd given the fact that a) I was driving and b) I could feel myself blacking out like I've never felt before (lightswitch going off/unplugged feeling).
Since the episode of fluttering heart/suspected Afib my heart has been behaving itself again. It is as though I have periods (of say a month or two) of my heart going completely bananas and then it returns to normal(ish).
I cannot understand why my heart issues seem to flare up dramatically and then wane. The doctor's are insistent my thyroid can't change that fast and when I ask for a reason for this they can't give me one.
Despite saying things have calmed down recently (which they have) my daughter only slept for half an hour last night and I've felt the familiar fluttering all morning
My Kardia has said 'possible Afib' about ten times over the past two weeks. Every time I send off the recordings the reader says it isn't afib. But I've felt my heart fluttering when it says it. I am so confused, surely there can't be that many false positives?!
On top of that I've found a lump on my breast and I'm waiting for an appointment at the breast clinic.
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