I suffered for years from this condition, had no idea that was why I felt so tired and I put that extreme tiredness down to my AF:
Dr Sanjay Gupta - The Heart and Hypothyroid... - AF Association
Hi Jean, interesting read. I have had an underactive thyroid for nearly 30 years & that's when I first noticed ectopics & had them ever since. My blood test in December suggested that my levels were too high so I was reduced from 100 to 75 to see if that was better. I have a follow up blood test next week. The point is you certainly feel 'off' when you are out of range & your heart is not too happy
Great information Jean, thanks for posting. I have some of the symptoms mentioned but my thyroid is good - my symptoms are more to do with Autoimmune/Autonomic Dysfunction.
I think that it just confirms just how complex human biology is and that treating the mechanics in isolation is not the way forward. That’s why I don’t believe AF will ever have A ‘cure’.
It is an automatic test but they only do one test and evidently there are several hormones which can be deficient. I don’t know too much about but if you go HU Thyroid community they know all the ways & wherefores.
My cousin kept testing normal for under active thyroid for years - until a new GP came along & tested her with a more sensitive test - sure enough she was under active.
Blood tests can also be borderline so not treated but you can be symptomatic.
The NHS routinely only tests TSH levels. TSH is a pituitary hormone not a thyroid hormone but they think it's the gold standard!
The proper thyroid blood test that is necessary to see what's really going on should be done first thing in the morning (8am if possible) having eaten nothing since the night before and not having taken any thyroxine for 24hrs. And they should be testing TSH, free T4 and free T3.
If they don't test fT4 and fT3 together it's a pointless test. Then when the results are in, being in range means nothing. The free T's need to be in the top 3rd or even quarter and once on Levothryoxine your TSH should be 1 or under. Sadly NHS rarely understand any of that. Most of us test ourselves using blood tests from labs we can buy them from and then we treat ourselves and tell the GP what we want when we know it works. It's a right pain. It's a very misunderstood condition and it wreaks lives.
Blame a man named Toft. He was involved in inventing TSH test and responsible for the dogma that if TSH was in range no need for meds. The dogma used to be that there was no need for treatment till TSH topped 10 and never mind how many symptoms of hypo you had. Doctors are no longer trained to recognise subtle signs like non pitting oedema and loss of outer third of eyebrows. I doubt they even recognise "myxie" face any more. My very first thyroid test 27 years ago showed TSH just over range but free T4 below range. My GP in Brum did not recognise that this was a red flag. Did not know that in the early stages of hypothyroidism the rising TSH usually "whips" the thyroid into producing sufficient T4 to keep free T4 in range and my result should have meant more testing at least. I suffered another 7 years before finally getting treatment after a routine set of blood tests at the hospital. TSH had still only risen to 7.5 but the hospital doc flagged it to my GP and said I needed treatment. I decided to educate myself about the thyroid as it was plain my GP had let me suffer by sticking to the orthodoxy.After feeling well on a combo of thyroxine and Liothyronine for many years the latter was stopped after my first bout of afib in 2015. Downhill all the way since. TSH has now risen again to out of range. Putting up T4 has to go very slowly as being floxed has made me more sensitive and I don't want to provoke afib episodes. I wish I could pluck up the courage to try some T3 again.
Thank you for that info.
I'm seeing a nurse this afternoon for an INR blood test. I'll ask her if I can have a thyroid test. Think I may have to go for one of the private blood tests to get the full one carried out, as the lab that tests blood for this area is not happy to do the full range. I'll see if the surgery will be willing to take a phial of blood for me to send away. I'm quite good at turning on the charm and grovelling, being extra nice to everyone can bring it's benefits when needed. I live in hope.
TSH has a daily cycle. It's highest in the morning and lowest in the later afternoon and evening. So if you don't want your dose lowered or you want a raise or just to be diagnosed, you need to drawer blood first thing and don't eat or drink anything but water first. Obviously don't take your day's meds.
How on earth do they let you keep a TSH so low? When I was hospitalised with my first afib attack the cardiologist went apeshit at my underrange TSH even though my free Ts were well in range. He ranted on about T3 as if it was cocaine even though my dose was only what a normal , undamaged thyroid produces. I believe he sent an admonitory letter to my endocrinologist and when I next saw her she did a U turn and said I could not run a practically undetectable TSH anymore . Cardiologists seem to rule the roost.
They don't understand thyroid. They react to anything they have been told affects the heart. To keep a low TSH you have to take it into your own hands.
I was taking a small amount of T3 last year when I went into Afib persistent. Just 12.5mcg You would have thought I'd diced with death to hear them. It had been the first time I felt a bit better in years. I stopped it and focussed on the Levo again. But I can't get my T3 level to rise no matter how how my T4 is, even over range. I'm about to do the DIO2 gene test to see if I have the mutation to show I don't convert.
I too am scared to try T3 again, but mostly because of how they react. It doesn't mean I won't. I pay for a private endo. We will see where I might go next in April when I next see him.
Thanks Jean. Really useful. Complicated reply coming...
I was tested for thyroid issues in hospital after my first af episode in 2006. They found I was slightly hypothyroid but decided not to treat it for fear of exacerbating the af. Many doctors believe/d that only too much thyroxine caused af and that not enough didn't. It was only after my hypothyroid level was extreme (as was the af) that they conceded there was a link.
So... I was recently told I have a fatty liver condition, despite me being tall and skinny and a non drinker (it usually affects overweight heavy drinkers). This is a serious condition which can lead to cirrhosis, liver transplant and cancer. Lo and behold, on reading around it, I have found connections (too complex for here) to thyroid hormone deficiency and heart rhythm...
So... I came upon all this through researching the impact of probiotics on the gut flora, because I was making my own kefir (fermented milk). Long and short of this is that there are known and proven benefits to the endocrine system from improving the balance of what lives in your guts; and that this might ultimately impact on the incidence of af - via changes to the way your body deals with inflammation and to your hormone balance, in particular your adrenaline levels. Home made fermented foods (not pasteurized shop-bought) are the only proven way to do this yourself as far as I can see.
I think this is worth exploring as I haven't seen all these connections made in this way yet, and I am prepared to put this all together in a short paper if people would find it useful (including instructions on making kefir...).
My wife tells me she comes home from work expecting to find me like Mickey Mouse in Fantasia, with the house awash with kefir and me trying to fight it back with a broomstick.
The internet is full of instructions for making kefir, which is easy and pleasant. Gut health will not replace a failing thyroid, but can help calm things down if you have Hashimoto's thyroiditis. But then you find a whole load of people with that condition claiming dairy is the devil's spawn so it's still a minefield.
It's true that gut health cannot directly influence the health of the thyroid, but it has been shown to influence autoimmune activity. Given that autoimmune issues, such as, as you say, Hashimoto's and also Grave's disease, constitute a major proportion of hypothyroid illness, then this is very relevant.
Also, much of the research on which these conclusions are based involved the use of probiotic supplements, which have been shown to have limited effect on the levels of nacteria in the gut; whereas use of home made and non- pasteurized probiotics has been shown to lead to significant increases in gut bacteria populations. This seems to me to challenge these research conclusions.
As you say, kefir is a very pleasant (and very inexpensive) food, as is homemade 'real' yoghurt. If somebody told me I had an outside chance of helping my hypothyroidism and subsequent af through eating yoghurt every day I'd give it a shot.
If you read what I said you will see I said it might help Hashimoto's sufferers. It certainly won't help people with central hypothyroidism or non-autoimmune thyroid conditions.
All fermented foods are good for us. I eat a lot of it because my husband makes all sorts. I doubt it will ever help my Afib or my thyroid as I don't have Hashimoto's.