I saw the cardiologist on Friday last week, was seeing the Ep for a possible ablation, I didn’t see him but one of his team.
He said that although I was in AF 24/7 I was managing with my symptoms, and an ablation would not lengthen your life but just stop symptoms and some have to have at least 2.
my thyroid had been out and he wanted that sorting.
he did a tsh only blood test although he wanted a full one but system would not let him activate.
My results came back in range 1.98 (0.1- 4) so it doesn’t seem to be my thyroid
I am not seeing them now for 4 months
I have tried everything to get out of it, he did mention a cardiversion (spelling!) but said until thyroid right nothing would work as I would just go back in.
at a loss what to do as I am breathless doing things.
Am in mid wales U.K.
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Lilylui
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What do you mean by your “thyroid has been out”? Your results seem to indicate that it’s not the source of the problem. Are you on thyroid medication? If not then your results seem to be OK. If that’s the case, then it’s perfectly reasonable to ask your EP (preferably not one of his registrars) to reconsider the possibility of an ablation and take it from there. There is quality of life to take into account too, and you are quite symptomatic so it’s not unreasonable. It is true that people sometimes need more than one ablation and it’s also true that multiple ablations don’t always result in near-permanent NSR in the longer term. You need to weigh up the pros and cons. There are some people on this forum who have had multiple ablations and still found themselves in permanent AF eventually. They might share how they manage it and what helps them, after all you are in permanent AF now and you’ll still need to live with it for a while longer until you can have an ablation, if you choose to go ahead. So, do your homework and leave no stone unturned so you can go to your next appointment with lots more information and knowledge.
Thank you, apparently my thyroid is in range so it’s not that, I don’t see them again for another 4 months now
I want a full blood test but can’t get the blood draw as no place at all near me nearest one over 1.5 hours away. I have asked chemist etc, and go surgery won’t do it either.
I can’t afford a nurse to come out as nearest one on list was 70 miles away ! I think I really know what is going on.
Lily you can get full thyroid function test with Monitor My Health. Don't need blood draw...it's finger prick blood sample. Cost £29. I can't ever get enough blood with finger prick method but it works for lots of people.If you don't mind me asking, how old are you?
I have checked Lily...monitor my health still does thyroid tests...price gone up to £42 though. Make sure you go into Monitor My Health wedsite. I found other sites offering MMH tests at a higher price. If I were you I would get finger prick Lancet from chemist first and to see if you get a decent blood flow after pricking your finger. If you do get decent flow more than likely you will get sufficient blood sample to send off for testing. I could never get an sufficient amount of blood via finger prick even though I was on apixaban!
I’m not aware that being hypothyroid is any reason not to have an ablation. I can understand there may be some concern if it’s not stable and more likely to cause AF but if it’s well managed that’s no excuse. Some people with thyroid issues on this forum have had ablations, so it doesn’t automatically exclude you from that option. Even if your thyroid condition is well managed, you may well still have AF so I don’t get what this doctor is saying at all.
Hi Lily, it’s not always possible to get a full profile thyroid test on the NHS. My husband has just paid for one - the thyroid UK forum has good info on this.
It’s not good enough to be told that an ablation won’t lengthen your life and will only relieve the symptoms. It is not everybody’s choice, but if that’s what you wish you should be respected. If you are looking to get an ablation it wouldn’t hurt to be on a waiting list while you are waiting to sort out other issues. In some areas there is a year waiting list and you’d hopefully have thyroid problems under control by then.
I have just had an ablation for persistent AF and it’s a blessing, so this post is biased by this and I don’t have a medical background.
The thyroid affects every cell in our body and if there is anything amiss there, it could be affecting your heart. What did you mean by mentioning it? Has it ever been fully checked? Ask for full testing of Free T4, Free T3 and TSH. Then post on the thyroid forum for advice. They are very knowledgeable and will help you.
NHS will not do full thyroid test unless you are on NDT or if you thyroid levels need to be suppressed due to cancer of thyroid. Hence, I have to get private thyroid function tests.
3.1/2 years I keep my TSH 1.5-2.5. Directions from Mr Gary Clayman top USA surgeon in thyroidectomies and my Surgeon. I discovered same Surgeon as well.
In 2020 Feb, 4 mths after stroke due to Papillary Cancer (shadow diagnosed on thyroid through a carotid arteries scan), had thyroid and 12 right lymph nodes removed (2 infected). I declined RA and Suppression TSH as Low Risk and Heart Condition with AF.
There are other tests like T3 and T4(total). Secretion, Immunity
I have a TSH whenever I wish to check. I take synthroid 100 and 25mg and in each month I take a reduced 100mg x 3 separate days.
My wife is in persistent AF. There's quite a range of tests you can do via post with you taking blood via a finger prick. My wife checked her thyroid function this way, Think it cost us £45. Normally they do a cardioversion to see if heart would go back into NSR before an ablation. Have you had one? Wife had 2, both failed so ablation not offered. A change of meds might help, as was the case with wife when she switched from Bisoprolol to Nebivolol.
No it wasn’t offered on the letter I received they said once thyroid okay I could go on flecainide then be cardioversion, not sure why I have to go on flecainide first though? Did your wife? It’s worrying as it seems to be live with it.
Wife was put on Nebivolol by consultant, and had to be on it 4 weeks prior to all the tests, then a further 10 weeks waiting for cardioversion which failed. She has been offered another cardioversion but would have to also take another drug amiodarone for 4 weeks prior. They emphasised the many bad side effects of this drug, some of which are irreversible, so she's decided not to attempt any more CVs.
Yes, she is in and will stay in persistent AF. Next review in 6 months. Nebivolol is keeping her resting rate below 90 without making her permanently exhausted like the Bisoprolol did.
The cardiologist said cut tablet in half and take morning and evening since then it has dipped to 47 at times so have stopped them and will use as a pip for now.
I can't have ACE or METOPROLOL BB and DILTIZEM SAVED ME. Public H/SPECIALIST left me on nothing to lower a h/r of 154.
I was referred private by locum dr.
but h/r high for 2 years 3 months.
= DILATED ATRIUM SEVERELY
REGURGITATING RIGHT VENTRICLE
Normal chambers. no way of cardioversion, ablation or anti-arrhymn.
But that article and others call DILTIAZEM an anti-arrhymnic med.
IT didn't change rhythmn but it dropped h/r to 51. the 180mg did. the 120mg more suitable.
Diltizem comes in a capsule so i cannot 1/2 it.
I asked the new young chinese cardiologist was the damage to the atrium caused by rapid heart for 2 years 3 months. he told me to look forward and not back.
i also have a systollic soft heart murmur just like my mini schnauzer JAZ. she remains level 1 and she is 10. (70) so we are both a couple of heart abnormals.
Doesn’t it scare you the thought of a stroke or heart attack? Mine is now controlled but the breathlessness is a real annoyance I wish I could sort that out, not sure if it’s the apixban, verapamil or AF !
Flecainide is a rhythm dose tries to get you back into normal rhythmn but your ECHO or MRI needs to be structurally normal. I can't have as dilated LV.
This is my experience and hope it may help.It worked for me and maybe some things maybe useful.I really don't know if and how you can get this decision changed.After a long fight I eventually got a referral to the fantastic Arrythmia nurses at our local hospital.The initial phone consultation was very disappointing.I was told that with my age and comorbidities it was highly unlikely that they would be able to help but agreed to a 24 hour monitor.I had to chase the result and spoke to a different nurse.In AF 95% of the time.They would try CV.9 month wait.
Failed after 9 days.Push again for Ablation.Another year but a couple of months of me making the decision.
The reason for my pushing was QOL.
I was very active pre the switch to Persistent and did not want to give up on this.I still exercised but the unpredictably was the worst thing.I really don't want to worry you with the length of my fight .This was Jan 20 it all started.Everything affected by Covid.
I hope someone can help you find a sympathetic ear that will help you push forward.I know 4 months can seem a long time but keep notes. Do find a way of monitoring you AFib.I used an Alternative to Kardia called EMay and an app called Fibricheck .Try to get full thyroid test as suggested.
Quality of Life is now more widely appreciated and so important.
I can only wish you well in your journey.This forum has been so much help to me so ask as many questions as you need.
The members helped me so much and I even felt as if some members were holding my hand when I was in hospital awaiting my procedures.
When your ECHO or/and MRI shows normal structurally sound heart and there are other factors such as your age, weight, how long you have had AF etc then you may be offered an ablation. Then there is type.
Reading more the balloon type ablation is more superior.
I can't have see, above structure abnormal. Dilated LV and RV regurgitating.
I suggest you have a carotid arteries check and check thyroid. The hospital after stroke showed clear carotids but a shadow on my thyroid. Biopsy showed 19mm carcinoma papillary cancer.
Thyroidectomy and 12 right side lymph nodes removed (2 were affected) Just in time.
when I had it checked a month go via doctors it had raised to 8.4 so he only had that result, he did a tsh and it was down when I rang the other day.
I had a carotid scan I asked doc for it and it was totally clear, I had a thyroid scan I paid for in 2022 and that was fine but have got hasimoto’s as well apparently.
I don’t take any thyroxine I only take T3 I take that first thing in morning and leave an hour before having anything else, in the afternoon I do the same nothing for an hour before or after it.
If you don't have a thyroid Thyroxine is prescribed. T4 not T3.
Try taking thyroxine - nugget/s under your tongue as then they go straight into the bloodstream. So water early morning nuggets dissolving and 1/2 hr to 1 hour. No calcium on breakfast, or iron - egg, soy at breakfast. 4 hours gap best for absorption.
Remember take T4 Synthroid daily as you have no thyroid otherwise no hormones for body processes like digestion, elimination, sex, everything is relied on the thyroid.
Do speak to your surgeon about what you are taking. T4 to T3.
Happy seasonal future. Be happy, well and control for your meds to work well.
Are you breathless because your heart rate is high or because of the AF, do you think? If the first, a small dose of bisoprolol is often given (that's what I take).
Some beta-blockers are much more "cardio-selective" and can be safe for mild asthma, I think. AF in itself can affect the lower chambers, reducing the heart's output, but often this is through making them beat a bit to quickly (or much too quickly!). Keeping the rate down can help relieve symptoms - well, that's the theory and I find it does calm me a lot and help.
"He said that although I was in AF 24/7 I was managing with my symptoms, and an ablation would not lengthen your life but just stop symptoms and some have to have at least 2. "
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There's a certain truth mixed up with some arrogance and stupidity in what your doctor says. While being in persistent may not change your life span, that statement doesn't take into account the quality of you life. Being "breathless" is not a way to live, if you have options. If this doctor isn't providing and advocating options such as meds or ablations, time to get another opinion, preferably from an ep.
I was supposed to see the EP as I was referred to him, but at the appointment it said or one of his team so I never got to see him just the cardiologist on at same time.
is difficult as my heart one blames my endocrinologist.
But I believe it you when all research and information done who manages your own thyroid but heart you need a specialist to change medication.
Can you keep your TSH at below 4.2? I get a normal between .4 - 4.2.
Different Labs can give differing levels. I try to get same one at same time.
Be patient. I started high TSH after operation and surgeon said that was good because a patient can go toxic after throidectomy. I didn't. He increased my throxin gradually until I levelled and then I did the twinking.
Jim it's not that easy here in UK to get appropriate medical referrals for treatment, let alone to an ep. I have tried to get referred to an EP for months now...In the end I had to go private. I live in a inner city areas so strictly speaking there is more medical opportunities to be had in built up communities.Lilylui lives in mid Wales, countryside most probably, so she will be at a disadvantage seeking opinion from an ep or any other medical practitioner for that matter. She has less choice than the rest of us....sadly, her options are limited. Hope Lily is not offended by my comment, sure she will put me in my place of I have got it wrong.
Could not have said it better my self, a lovely place to live but 1.5 hours to a hospital either wales or England, and the health service here is hopeless. We get a visiting EP from Birmingham come every 6 weeks I really hoped I was seeing him as my cardiologist wanted me to have an ablation, I thought I would go on the list while I had time to think about it. So quite disappointed not getting a chance.
Hi Lilylui, I am severely hypothyroid due to being prescribed Amiodarone for afib. I don't have permanent AFib though.. Off that drug now. My THS 11.9 T4 below range T3 a tad in range.Surprised to hear that you cannot have an ablation because you are hypothyroid. I recently saw a cardiologist (privately) for AFib, who knows that I'm hypothyroid. He referred me to another doctor for ablation.
So why have you been told that you cannot have ablation until your thyroid levels been sorted? Besides, your thyroid blood results are for TSH only. Without T4 and T3 numbers you do not have a complete thyroid test result.
Have you considered getting private thyroid test with Monitor My Health...you get blood sample using finger prick method. Cost £29.
What he said was if I have an ablation and thyroid still out the ablation would not hold, and I would go back into AF, I am worried about an ablation to be honest he would not offer a cardiversion either until my thyroid sorted .
I get where he is coming from. Seeing you have had hypothyroidism for years, I suspect he might be attributing your AFib to hypothyroidism. Was your AFib diagnosed first of was it hypothyroidism?
In all honesty Lily, I can't recall if it covers antibodies. Go to their website that should tell you. I use Medichecks now £68, full thyroid test, antibodies, vitamin levels, inflammation markers, iron levels. This test available for blood draw or finger prick method. Join thyroid UK....I In that one. Like yourself, I not on any beta blockers....I'm hypothyroid an today I In afib. It's possible hypo status is triggering the afib.
Yes am going to try and get a finger prick test but they all seem so expensive most want a blood draw which I can’t do as tried everywhere to get one and no luck. Live very rural.
Hi Sincere thanks Joy. Yep I am certainly hypo and I don't have a thyroid neither. AFib attacks are on the increase this past month since I stopped Amiodarone August gone. Initially the Amiodarone pushed my thyroid levels over range despite levo dose decreases. When I stopped the amio thyroid levels fell to the basement as you can see. Have just done a private thyroid test after a levo increase 8 weeks ago. Increased from 50mcg levo every alternative day to 50mcg daily. Thing is, due the long half life of Amiodarone have to do low increase of levo, Going by hypo symptoms and AFib attacks not expecting much of a change with blood test results.
I've never been TSH that high except when the thyroid was removed. Surgeon put up my Synthroid gradually until he and I read that LOW CANCER - PAPILLARY patients should keep TSH at a little higher than lowest to 1.5-2.5.
High TSH you run the risk of cancer returning.
I find it easy on 125mg daily to keep my TSH there.
You may have an absorption of thyroxine. Therefore I would suggest you take it under the tongue and dissolve it. It will go straight in the blood stream.
Hi JoyHad my thyroid removed 1992....papillary cancer. Like yourself, was put on levo dosage to suppress THS but my levels were zealously suppressed way lower than 1.5-2.5. For many years. I was hyperactive ...thought this was aspect of my personality but now know over zealous prescribing of levo, to suppress THS, caused hyperthyroid type symptoms for many years. 2020 endo consultant looked into history of my thyroid test results. His words, not mine: "You have been over treated with levothyroxine for many years which is why you are now burnt out" He also said, "More than likely your heart will be damaged".
My heart certainly has been damaged in more ways than just afib.
Anyway got results of recent thyroid blood test. Retested after levo increase from 50 levo alternative days to 50mcg daily. THS now 1.52?!!!! Don't understand how it got from 11.9 to 1.52 with such a small levo increase.
Will definitively take levo under tongue will know for sure then that it's getting into my blood.
Mine was 1.2 then whilst eating liquorice shot up to 2.8 and now I am back to 1.6 without liquorice! I read that it could upset your TSH levels.
You have no thyroid so you have no hormones that will process your holestic procedures in life. Without any thyroxin you would pass this world.
Take daily do not skip any days.
Its what you wake up to. with water first then take the nugget/s. How much do you weigh as it goes on weight.
I have a fighting talk to the cardiologist as he said my T4 was abnormal at 23.
Now that I am back down to 1.6 I could take a 100 instead of 125 one day this week. To make him happy. As I said T4 amount is my trying to level my TSH. More to bring it down or less to hedge my TSH up.
I don't know how he expects otherwise.
Some food will change the balancing. As you can see 1 x nugget 25mg can change the ongoing amount.
Here's to Christmas season. I've purchased a gluten-free cake and a slab of chocolate with blueberry and raspberries and cherries.
I'm thinking of slow cook lamb shanks in an infusion of mint fresh from my garden. 1 each for dinner for a while. I get SilverFarm Meats which are grassfed in NZ.
Thank you Joy. Unfortunately, due to Amiodarone toxicity and long half life of this drug which I no longer take I cannot reduce/increase levo meds the way I usually would have done prior to the Amiodarone treatment which totally messed up thyroid levels. Due to Amiodarone issue being so complex, thyroid UK forum cannot help me that much the way it did in the past prior to me taking Amiodarone. I have to see a a specialist endo who is familiar with thyroid conversion problems due to Amiodarone toxicity.
Enjoy you Christmas feast lovely! I love any cut of lamb even lambs liver!
Have not planned Xmas dinner yet. Too much to handle with all wants going on health wise
Have joyous and prosperous christmas. Peace be with you.
Listen now you don't have a thyroid so regardless of anything else you will NOT be producing any T4. So you need the replacement synthetic thyroxin.
Now your weight governs the daily intake of thyroxin. I take Synthroid as the pluses I have before mentioned make it easier to keep at a level OKed by your thyroid surgeon. Every year I have a neck scan to rule out the return of cancer.
The Anaesthetist had thyroid cancer but it had spread down to lymph nodes central. He had 2 lots of RAI post operation. Sadly it has returned at 15 years.
He has now left his job. He and my surgeon fought to have my thyroidectomy plus a.s.a.p (got to 4 mths) whist the Endocrinologist demanded that 6 months should elapse from the stroke.
I lost all respect of theis person who disregarded my MO to Metoprolol. Then I told her NO to RAI and large amount of thyroxine to keep me in TSH suppression.
The latest research is that low risk papilllary cancer patients should choose whether to
1. Have RAI
2. Be kept in toxic suppression. ( I was 70 years with a heart condition).
If Am... mucked up your thyroid when you still had one it is no longer a problem.
I have been living with AF for some years now and I regularly get breathless especially when rushing. The advice from my cardio is just to slow down until the breathlessness goes away and start up again at a moderate pace so that you are helping your heart to take the strain.
In your case I should want to see my GP about my medical history and get personalised advice from them. But don't despair with the right medication ( blood thinning and heart rate control) you should be able to manage the condition. It's being sure what exactly is causing any symptoms that is the key thing.
That said all AF patients seem to experience tiredness at one level or another, but we must keep mobile, even if only at a steady pace. Good luck.
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