Atrial Fibrillation

[Cat-222]

I have just been diagnosed with Atrial Fibrillation and have to take medication and blood thinners.

🥲 its very scary! Does anyone else suffer with this? How do you manage the condition.

Can you give me some positive advice. Thank you 😊

[SlowDragon Administrator]

Loads of posts on here discussing AF

healthunlocked.com/search/p...

May or may not be linked to having thyroid disease

Atrial fibrillation can be linked to being on inadequate dose levothyroxine

Looking at previous posts are you still only on 75mcg levothyroxine?

What are your most recent results and ranges for TSH, Ft4 and Ft3, plus vitamin D, folate, ferritin and B12

[Cat-222 in reply to SlowDragon]

I am still on 75mg levothyroxine.

Having my bloods checked on Thursday as I have blood in my urine. Having a full blood count done and different vitamins not sure which ones.

Doctor only checking TSH, I will have to go private to check rest. The consultant I saw today said my thyroid levels need to be optimal.

He said my thyroid could have contributed to AF as well as age.

[SlowDragon Administrator in reply to Cat-222]

Looking for Ft3 at least 50% through range

Usually Ft4 will need to be a little higher, at least 60-70% through range

Is your test on Thursday early morning?

ALWAYS test thyroid early morning, ideally just before 9am, only drink water between waking and blood test….and last dose levothyroxine 24 hours before test

ESSENTIAL to have OPTIMAL vitamin levels too

Vitamin D at least over 80nmol

Serum B12 at least over 500

Folate near top of range

Ferritin at least over 70

When were vitamin levels last tested

What vitamin supplements are you currently taking

Is your hypothyroidism autoimmune thyroid disease, also called Hashimoto’s, if yes are you on strictly gluten free diet and/or dairy free diet

[Cat-222 in reply to SlowDragon]

my test is just after 9.

I have to drink water during the night as I wake with a really dry mouth and go through 2 glasses.

My last vitamin D test last November was 96.

Serum B12 was 534 - Nov 22

Folate 3.6 - Nov 22

Ferritin 84 - July 22

I am currently taking Probiotics, vitamin C and omega 3.

I have just hypothyroidism, I do try and stick to gluten free. I do have dairy.

[SlowDragon Administrator in reply to Cat-222]

Absolutely fine to drink plenty of water before test

B12, folate and ferritin need testing at least annually

Serum B12 was 534 - Nov 22

Folate 3.6 - Nov 22

Ferritin 84 - July 22

obviously need ranges on these results

Folate was either deficient or virtually deficient. Were you prescribed folic acid, or did you start taking daily vitamin B complex?

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

if both antibodies negative have you had ultrasound scan of thyroid

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

[Marz in reply to Cat-222]

Folate looks low in range. I would research - low folate and AF.

[Cat-222 in reply to Marz]

I tried taking folate but it made me ill. Didn’t agree with me.

[Marz in reply to Cat-222]

Which one do you take ?

[helvella Administrator Thyroid UK]

An awful lot of us have atrial fibrillation! Both people with thyroid issues, and many without.

Some have Afib for short periods, some long, some permanent.

Some really notice the Afib, some hardly at all.

You can see from the attached that I have it all the time. Just checked, and I am at 120 bpm right now. And now 66 bpm. Over the past six months, my heart has ranged from 41 to 210.

My point is really that it is just another factor. Many people have it for an extremely long time, and with extremely variable rates, symptoms, etc.

Screenshot of my AF from Apple Watch

[Cat-222 in reply to helvella]

Thank you for your response and the information that’s really helpful.

It’s all new to me and very scary. Are you on beta blockers and blood thinners?

Do you have any helpful tips to treat it?

The doctor told me to keep my weight down which is difficult when you have hypothyroidism. I am 12 stone.

Cut out caffeine and alcohol

Stay hydrated and do exercise.

[helvella Administrator Thyroid UK in reply to Cat-222]

I was offered Bisoprolol - but decided not to take it.

I was offered a blood thinner. But am not wholly convinced. Probably just me!

I have absolutely NO helpful tips.

You might consider getting some sort of monitor. I got an Apple Watch (eventually) - there are other options. It is a difficult balance between using something like that to check from time to time. And getting utterly obsessed!

I have been both under-dosed and, I think, slightly over-dosed on levothyroxine at times. Doesn't seem to make much difference to me!

Just as with thyroid issues, we are all different. Don't get convinced by what I say. Or what anyone else says. Take it into account and decide for yourself.

Hah! Caffeine. If anything my Afib improves when I've had a good double espresso. I suspect alcohol does have some impact - but not much (for me) with moderate intake.

[Cat-222 in reply to helvella]

Oh wow! Aren’t you worried about the risks not taking the medication?

I will take it because I want to feel better and dont want to risk blood clots or a stroke as I am high risk.

I have felt awful, having really bad dizzy spells and nearly passing out. My heart beats so fast it’s scary 😟 it happens when I eat so I have difficulty eating.

I feel so weak at times and have trouble walking.

I will take the medication to control the Afib and hopefully feel better and have a better quality of life.

[helvella Administrator Thyroid UK in reply to Cat-222]

As I say, we are all different!

To a very great extent, I have no idea how fast my heart is beating. I can view the screen and see it going up and down, over seconds or minutes, and feel absolutely nothing. No hint that it has changed at all, let alone between distinctly low and pretty high.

That is why I don't feel an imperative to treat it. And it is clearly incredibly different to you.

I worry as much about taking medicines as not - at least in this case. I did actually try a few Bisoprolol but they didn't make me feel any better at all. If I had noticed an improvement, that would be another matter.

And worry, anxiety, is clearly a major contributor to Afib. If you need to do something - take a medicine - and that helps reduce your level of worry that will, in itself, be helpful.

I'm not saying that Afib isn't concerning. It is. But to know that at least some people carry on for years with permanent Afib, I hope that helps you to see things slightly differently.

[jezebel69 in reply to helvella]

I totally agree about anxiety being a huge factor in AF. Mine started in the Pandemic and my heart rate along with my BP went sky high. I stupidly blamed my T3 (maybe because I knew the doctors would) and stopped taking it. It has taken me since then to get my dosage right again. Food seems to trigger AF but only if I'm already anxious. I would LOVE a chill pill

[SlowDragon Administrator in reply to Cat-222]

I have felt awful, having really bad dizzy spells and nearly passing out. My heart beats so fast it’s scary 😟 it happens when I eat so I have difficulty eating.

I feel so weak at times and have trouble walking.

This could be down to being on too low a dose levothyroxine…..rather than AFib

Approx how much do you weigh in kilo

75mcg is a low dose unless very petite

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine:

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

[Cat-222 in reply to SlowDragon]

I weigh 12 stone.

I have been advised by the cardiologist to start taking beta blockers and blood thinners otherwise I am at risk of a stroke it very scary.

The doctors have said I am on the right dose of thyroxine so what more can I do?

It’s very stressful which I am trying to avoid because it makes me feel worse.

[SlowDragon Administrator in reply to Cat-222]

Suggest you get FULL thyroid and vitamin testing done yourself

Medichecks or Blue horizon

Test early morning, before 9am, only drink water between waking and test….last dose levothyroxine 24 hours before test

Guidelines suggest is you weigh 12 stone = 76kg

76 kilo x 1.6mcg Levo = suggests daily dose likely to be around 120mcg Levo per day = 840mcg per week

Currently on 75mcg per day = 525mcg per week

When left on too low a dose levothyroxine low vitamin levels are likely

[thyreoidea in reply to Cat-222]

Mine used to skip around whilst eating too and straight after taking Bisoprolol as well.

[CoeliacMum1]

My mum (in her 80s) has AFib she was in hospital last year for 3wks unfortunately she has only one heart medication that she can take now as all others cause other reactions. Now she is on Amiodarone which has caused hypothyroidism (well known fact cause thyroid problems) but like me she has had reactions to some Levothyroxine. I was surprised as it was Mercury brand so another change. My mums heart condition is under control now and it was extremely out of control for few months around late May 2022 she ended up in A&E then in high dependency ward a week before going into cardiac ward throughout most of August 2022.

The bottom line is don’t be too worried, these tablets which ever you settle on, as you may need to adjust, will get to work and you will be fine… it all seems daunting but what I experienced watching my mum this is where pharmacology is brilliant in maintaining quality of life… many people live long lives with this condition.

…my mums experience is complicated she has been on various BP medication warfarin and water tablets more than 20yrs, her previous heart meds never really worked well and was yo-yoing on various medication... her GP had thought she had High BP as always high at Drs but they weren’t taking into consideration the amount of pain she is in as requires both knee replacements ….Lockdown soon pointed out that it wasn’t the case when nurse took readings at home and her BP was quite normal only on exertion was it raised so requires something as her mobility with swollen legs bad knees makes everything an effort, she was taken off heart meds but not put on another and obviously her heart struggled more as she needed some sort of heart medication and taking her off and not addressing this caused her more fluid retention and cellulitis more over 12months. Since hospital stay and changing her meds her legs are normal size and no cellulitis for a year which she was getting reoccurring every year for decade or more as water was leaching through skin getting infected… everyones journey is different how we end up with various conditions but what I saw with new heart medication will settle you when get it right … I saw a miracle happen to my very elderly mum she is very overweight and obviously tired getting around due to needing knee replacement too, but she will not have a wheelchair 🙄

Afib is a common problem caused by many things… my mums was after hip operation she came out of hospital with it when in her late 50s early 60s was put on blood thinners - warfarin which never regulated but she’s on another now forget the name but has worked a treat, later on BP meds then water tablets for more than decade. She is at present suffering with hypothyroidism symptoms so having to adjust things but it was expected.

It’s understandable but hard thing to do but try not getting too anxious is probably going to be more helpful to you, do try not to get obsessed with monitoring leave it to the GP/Consultant or nurses… is there anything you can do a hobby or craft which can take your mind off elsewhere? Getting distracted into something other is helpful as is breathing exercises to calm things down. My mum loves reading and she is always much calmer and relaxed she has tendency to easily get overwhelmed and worked up but it’s understandable but doesn’t help this condition.

I do hope it all settles quickly for you it’s not pleasant when we get new conditions, I wish you well 😊

[Cat-222 in reply to CoeliacMum1]

Thank you so much for your story that was very helpful.

Sorry to hear of your Mother’s journey and hope she is feeling better now. It is a struggle to get things right.

I get me meds next week. I hate taking anything and am really scared but will definitely take them as I don’t want to risk getting a stroke. I am just overwhelmed with the diagnosis.I am nearly 63 and have been through so much but anything to do with heart is frightening.

I work 25 hours a week as a retail Manager, I just wish I could afford to retire but unfortunately I can’t. It’s a very physical and stressful job.

[bantam12]

I have Afib and I’m on Apixaban and Bisoprolol, no big deal and best to do what we can to prevent problems like a stroke !

If you are feeling dizzy and getting pre syncope you shouldn’t drive until symptoms are under control. Are you having more tests for that ?

Join the A F Association forum for lots of help and advice.

[Cat-222 in reply to bantam12]

Thank you for info. Yes a don’t want to risk having a stroke. I have had symptoms for a long time recently have got worse.

I only get the dizziness when I am standing, walking and eating otherwise I am fine so I have been driving, just being careful. If I did feel dizzy at all while driving I would definitely stop. It’s the way I travel to work everyday.

What is pre syncope?

I have had an echo which was normal. Blood pressure 24 hours cuff which was OK sometimes the pressure would go up but the beta blockers should sort it out.

I had a heart monitor on for a week.

I just hate taking tablets, have a phobia and scared of the side effects.

Where would I find the AF forum?

[bantam12 in reply to Cat-222]

Pre syncope is passing out. With heart problems you can faint without any warning !

AF forum is here healthunlocked.com/afassoci...

[Cat-222 in reply to bantam12]

Luckily that has never happened. This is all new to me I was only diagnosed on Friday so I am still learning. I had no idea what was going on.

I should get my prescription on Monday so will be able to start the meds then.

Thank you for the link 😊