Just to let you know I have atrial fibrillation directly caused by hyperthyroid about 25 years ago. I had my thyroid removed eventually. About 20 years ago.
I appear to be very sensitive to medication changes.
So I was taking 100mcg levo 5 days and 125mcg on Monday and Friday.
This was reduced from a higher dose where I took 125mcg Monday,Wednesday and Friday as I started getting more AF and tests showed I had dropped to below reference limit.
But eventually on the lower dose my hair started to fall out, nails breaking and so on.
tested and now above high reference limit. So dose increased.
The doctor wanted to increase to 25mcg addition five days a week but I insisted on only one extra tablet.
In the eight months since the increase I had one thyroid function test and the result put me in the mid range. I felt fine. Hair and nails recovered well.
But now I’m back to AF attacks again and recent test show I am sliding back down to very low but inside the reference points. 1.5 (0.35-4.9)
It appears I am incredibly finely balanced.
clearly I’m going back towards hyper given my state of anxiety feelings and TSH result. It’s too low for me and my AF.
So 50mcg extra I start towards hypo. 75mcg extra I start towards hyper!!
Is it that finely balanced or is it something else?
My Flecainide, bisoprolol and warfarin stay the same. I take calcium and vitamin d daily on medical advice.
I eat healthily and my diet is as consistent as possible. We eat a mix of meat, veg and vegan.
I don’t drink alcohol as it messes with bisoprolol. Don't smoke.
Try to walk every day.
I’m not sure what my perfect dose is.
I’m 68 and a retired teacher.
Is this normal for other people who have thyroid issues and AF.
Originally I took 125mcg daily after my thyroidectomy for many years. Repeated AF episodes always were associated with a lowering TSH result.
Maybe someone could shed a light on whether such a tiny alteration can make such a big difference. And how do I keep on top of it?
I wish there was a home use test kit like for diabetes and that I do for my warfarin that would tell you where you are at every week. Lol.
Thank you if you get time to respond. 😊
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Gilli54
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Essential to test vitamin levels at least annually
Very common to need to supplement to maintain optimal vitamin levels
do you have any other blood test results, apart from TSH
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Calcium was low. Cardiologist aware. Warfarin and supplementing with vitamin K is a tricky area. I’m looking into how to do it safely obviously warfarin is a vitamin k antagonist
Parathyroid is optimum
I have a scan to check arteries etc every ten years.
thanks for your input this has given me a whole lot of things to check up on
A quick test to see how well you are converting is fT3 ÷ fT4, when on levothyroxine only (any meds with T3 in distort the results).
Yours is 3.6 ÷ 16.2 = 0.22
This puts you in the realm of poor converter according to Midgley et al in this research 'variation in the biochemical response to l-thyroxine therapy and relationship with peripheral thyroid hormone conversion efficiency '.
As a result you would likely benefit from some T3 replacing some of the T4 in your thyroid meds.
Low T3 level may be causing afib.
See articles by professor Tania Sona Smith on www thyroidpatients.ca.
Your T4 to T3 conversion rate for these results is slightly better. 4.8 ÷ 19.3 = 0.25. Selenium, B12 folate, vitamin D, iron, and ferritin, are all important for T4 and T3 conversion. Ferritin needs to be at least 70.
It is important to remember that atrial fibrillation is extremely common and the majority of sufferers don’t have an underlying thyroid problem. It may be that your AF isn’t being caused by your levothyroxine dose. It may be that your anti arrhythmic medication needs to be reviewed. Of course you may be correct and levothyroxine is the trigger but please consider other causes as well.
I am under a cardiologist and use a Kardia monitor for my heart, so it is easy to correlate test results and AF over a number of years now. And historically when I used to have to attend A and E my TSH was found to have been below the reference level. Thus dose changing remedied the situation.
I was going to consider ablation, but the cardiologist added Flecainide to the mix about eight years ago and that works well if my TSH is in range. But ablation is still an option. It is medically recognised that hyperthyroid, pre thyroidectomy, which I allowed to get away with me when my mum was seriously ill, was the trigger for the AF. Didn’t take my meds properly
But I will send my heart ECG to my cardiologist and request an appointment .
After a thyroidectomy it is essential that you are dosed and monitored on your Free T3 and Free t4 blood tests as these 2 vital hormones need to balanced within the ranges at around a 1/4 ratio T3/T4 .
The TSH blood test is reliant on the HPT axis - Hypothalamus - Pituitary - Thyroid - feedback loop - but since you haven't a thyroid any longer this circuit loop is broken and a TSH reading seen in isolation very unreliable measure of anything.
The TSH was originally introduced as a diagnostic tool to help identify a person suffering with hypothyroidism and once the person became a patient and on any form of thyroid hormone replacement they should be monitored and dosed on Free T3 and Free T4 blood tests, with the TSH being the third leg of the milking stool and not the first and only one.
A fully functioning working thyroid ould be supporting you on a daily basis with trace elements of T1, T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg.
T4 - Levothyroxine is a storage hormone and needs to be converted by your body into T3 the active hormone which runs the body and said to be around 4 times more powerful than T4.
Your ability to convert the T4 into T3 can be compromised by non optimal levels of ferritin, folate, B12 nd vitamin D, and inflammation, antibodies and any physiological stress either emotional or physical - depression, dieting and ageing can down regulate T4 to T3 conversion.
In order to say anything more specific we need to see a full thyroid blood panel to include the vitamins and minerals as already detailed by SDragon.
If you doctor is unable to help you there is a list of private companies who can run the blood test for you, some even offer a nurse home visit so not too stressful and when you are sent back the result simply start a new post with all the results and ranges and you will given considered opinion on how best to get back to a better health and well being.
For all things thyroid including the list of private blood test companies go to Thyroid UK - the charity who support this amazing forum - it's where we all start off - thyroiduk.org
Were you diagnosed with Graves Disease and why your thyroid was removed ?
I too have Graves Disease but had RAI thyroid ablation in 2005 becoming increasing unwell around 8 years later and I now self medicate and buy my own full spectrum thyroid hormone replacement as the NHS refused to prescribe me and other treatment options in 2018 and now I am much improved thanks to a few books and a couple of amazing forums.
Thank you for your detailed reply. I hear everything you say and agree totally that there are many things that can be tweaked to give you a really good quality of life.
I often look at the helpful supplements for AF and the helpful additions for thyroid issues and they don’t mix. Flecainide and warfarin don’t like a lot of things. Sadly.
I’m even cautious with foot soaks with beautiful salts and other essential oils and found they were no nos in lots of cases
So as you say one thing balances another, but it seems I can’t use these other remedies as the two conditions and the meds conflict
I already have alarms set to take meds at all sorts of times including spacing out the vitamin d and calcium
It makes the day an alarm nightmare lol
But I will consider carefully all your suggestions and see what I can take away from it as far as I am aware all my other levels are optimum and it was just calcium and vitamin d that was needed Hb and ferritin potassium and magnesium B12 all ok and parathyroids working well too. Bone, liver and kidney, cholesterol and blood glucose all excellent. That test that has 1c in it that checks your levels over time. 😊
I do very much appreciate you taking time to reply and share your experience
I’ve looked at this again and see your reasoning around the T3.
I guess I’m afraid to experiment with my heart issues.
Maybe an appointment with an endocrinologist would help. Though I understand there is huge resistance to prescribing T3.
But it could make a huge difference to my hair, nails, skin and maybe even weight. I’m not overweight but borderline despite a very healthy diet and regular walking. I just can’t seem to shift below 79kg. I’m tall. Size 9 feet. Lol.
I wish I was braver, but the AF is so unpleasant I hesitate to make things worse. It literally intervened in my doing stuff just in case it kicks off
But much food for thought. I’m going to do more research around this thank you for making me consider another course
Interestingly I too am just under 6 feet with size 9 shoes and i was a lot heavier.
If with Graves Disease there is even more reason not to rely on the TSH reading though fully appreciate that in primary care that's all the yearly thyroid function comprises of :
Graves is an auto immune disease for which there is no cure.
There can be a genetic predisposition, maybe a generation away from you with someone with a thyroid health issue, or it can occur simply out of the blue, but it most cases it tends to be triggered and driven by stress and anxiety.
Everybody's journey with Graves is different and why it is so poorly understood and badly treated in mainstream medical.
At some point your immune system was triggered to attack your body and these Graves antibodies ' sit on ' TSH receptors which drives down the TSH reading which in turn signals your body to increase your thyroid hormones which causes higher and higher levels of T3 and T4 causing horrible symptoms and life threatening if not treated, initially with Anti Thyroid drugs, such as Carbimazole or PTU.
There is no way of removing these Graves antibodies that are ' sitting on ' your TSH but since you now have had your thyroid removed they don't interfere with anything except a TSH reading - and another reason why the TSH is a very unreliable measure of anything especially in Graves patients.
I likened myself when not optimally medicated to driving a car with kangaroo petrol and frequently breaking down exhausted and in a layby stressed, exhausted and unsure how much petrol I had left to get anywhere or do anything and just not reliable which I thought was my middle name.
If with Graves Disease you might to dip into the Elaine Moore Graves Disease Foundation website - Elaine's own experience of Graves/RAI thyroid ablation/ and continued ill health resulted in Elaine now being the leading researcher on Graves with now several published books, her own website and forum and a a World wide following, elaine-moore.com
A book by Barbara S Lougheed another Graves Lady - From Hyper to Hypo to Healing - Breaking the TSH rule.
Your Thyroid and How To Keep it Healthy is an excellent basic book on how the body works, how it's all interconnected and cause and effect - Barry Durrant-Peatfield wites in a easy to understand, sometimes insightful humorous way and still my go-to some 6 years on from my starting my own thyroid journey back to better health.
I am going to take some time to look into this. You are spot on. Graves disease. Driven by stress and anxiety while my mother in law was dying of cancer and other big issues. My dad had a thyroid problem plus Type 1 diabetes. There is autoimmune illness in his side of the family. I was extremely poorly before diagnosis.
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