On the Thyroid UK forum, there is much scepticism about the competence of physicians, including some endocrinologists, to diagnose and treat some thyroid problems. Routine thyroid function tests are seemingly too insensitive to pick up outliers.
It seems logical to me to posit that early, or under the radar, thyrotoxicosis is, like hypertension, inflammation, or genetic predisposition, one of the many associations with early atrial irritability.
Were this to be the case, more sensitive testing in selected groups of at risk people, and appropriate treatment, might slow the progression of atrial fibrosis and defer the need for burning the endocardium.
Thats an interesting question. I have no idea if my cardiologist looked into my thyroid status when i was diagnosed in hospital with arrhythmias. However when i later began with gastric issues too, especially in tandem with my arrhythmias, my GP was quick to look into my thyroid status.
My thyroid appeared to be functioning without problems but as time went on without a diagnosis of my health issues she referred me to an endocrinologist who was hugely impressed with the prior tests my GP had initiated and commented that it was most unusual for a GP to have gone so far in the testing she had generated. He initiated further tests to double check and didn't find a connection.
However i am not sure there isnt/wasn't a connection overall which could possibly still remain for me, who knows. I am most certainly open to the possibility as was my GP. I would be interested if others have found a connection and if so where has this connection taken them, if anywhere and has there been any thyroid treatment and positive improvement in their arrhythmia health.
My cardiologist told me that the tiny amount of T3 I was adding to my Levothyroxine when my AF became persistent would be very dangerous. He scared me off it. I'd only just started. He said I could have more Levo if I came off the T3. Bloody stupid instructions those were. Now, 2 years later and a private Endocrinologist because it's really, really hard to find a good one for thyroid on the NHS, I am on a much better level of T3 again and going through the painfully slow and upsetting dose adjustments. That cardiologist cost me 2 years. EPs understand the heart's need for T3. It's one of the organs that needs a lot of it, like the brain. But I've not seen one of those.
From my own observations and knowledge thyroid blood tests are one of the first things done if you present with palpitations or arrhythmias . You should be campaigning for better tests for as you point out the results are frequently inadequate. I think the main problem may be the wide spectrum of "normal" which is currently used.
When I was first diagnosed my GP instigated a full set of blood tests in advance of seeing a cardiologist. My TSH was low, T4 in range and T3 just in range. In the letter between the Cardiologist and the EP he included the results and concluded I was probably OK and in range (cannot remember the term used). Latterly, because my T3 had reduced, I had RAI treatment and they prompted my EP to postpone my third ablation. In my case, everyone involved seemed to be on the ball!
Wide spectrum of normal and completely inadequate tests added to the total lack of training of doctors with thyroid. They get 1/2 a day in 6 years and that's to cover both hypo and hyper and all they seem to learn is that the TSH test is gold standard (it's oh so not!) and that everyone is well if their results are in range (they are so often not at all well at that point).
Yes I had thyroid checks done right at the beginning too then again when I was on amiodorone for a short time. I understand that a full thyroid check would need to be made and is not always done so thyroid disease is missed so would we have had that full thyroid check?
Raised T3 with normal T4 and suppressed TSH makes the diagnosis of T3 thyrotoxisosis. Some over there say the NHS won’t allow GPs to order T3, at least that was my understanding.
Over range T3 is an issue. Most of us need it in the top third or top quarter of the ref range.
GPs occasionally ask for T3 to be tested and the damn labs decide they know best and don't do it! I'm lucky, I've never had it refused. You literally don't have a clue what's going on without a test to show TSH, FT3 and FT4 and even then you need that test done first thing in the morning. They will do them late afternoon when TSH is naturally at it's lowest point and then declare you "fine" whilst you would not be fine at 8.30am.
Don’t quite understand what T4 and T3 is l normally have a thyroid test every year but not had one for a while l know one can cause weight increase and the other weight loss l have A Fib so now I’m going to ring about my test as can’t remember when l last had one, also what are the opinions on here towards this Astra Xeneca jab as I’m worried as l am high risk of stroke or heart attack. I do take blood thinners but it’s worrying about this jab anyone in the same position.
If you have hypothyroidism you really need to learn all you can about it. You can't rely on GP's or even endocrinologists telling you anything helpful or making you well. We have to advocate for ourselves. If you don't know what T4 and T3 is you are woefully under prepared to get better. Also, that annual test will just be TSH and the GP will declare you "fine" if you are anywhere in range. And I bet you have had your tests at random times of day and after your medication for the day. From now on be strict. Test first thing in the morning (before 9am) nothing to eat or drink other than water from the night before and don't take your daily meds until after the test. Always ask for a print out of results (reception will do them for you) and keep it in a file so you can track progress or deterioration. Once on Levothyroxine your TSH will probably need to be 1 or below for you to feel well.
Go over to the Thyroid board on Health Unlocked and start reading and learning. You are as likely to have Afib from low T3 as from high T3. And no one you see about your thyroid will tell you that, they won't even know it. The standard of care for us hypos in the UK is diabolical.
This Thyroid Patients Canada web site is full of excellent information. Here's a very good look at Afib with hypo for you.
Yes, my cardiologist ordered thyroid tests immediately after diagnosis. I was so hopeful that it would prove to be overactive again and was treatable . . .
Thyroid problems are not good news for the heart . My mother had an overactive thyroid which they overtreated leaving her with an under active thyroid they didn’t adequately control . Hypothyroidism raises cholesterol accelerating atherosclerosis and my mother died aged 56 years 33 years ago and on this Mother’s Day I can say I still miss her every day . Her cousin Joyce , I hadn’t met previously turned up at the funeral and told me she had had a heart attack even younger which they told her was caused by a hitherto undiagnosed over active thyroid . So cardiac/thyroid problems are on my radar. Fortunately mine seems fine every time it has been tested but it’s a good issue to raise Badger
What I’m trying to get at here, is that the routine panel of thyroid function tests may be normal, but this may not necessarily rule out early thyrotoxicosis.
Consider this parallel ; glycosylated haemoglobin (HbA1c) was introduced 40 years ago, allowing the identification of the prediabetic state, and the early detection of incipient problems.
A more proactive approach to treating subclinical hyperthyroidism [see below] may delay AFib emerging. Similarly, a more determined search for subclinical hyperthyroidism in AFib, may help in managing the arrhythmia. Also, measuring Free T3 as part of the routine thyroid panel in this context may be worth exploring.
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“3.7. Treatment of hyperthyroidism to prevent atrial fibrillation [from paper linked in OP]
In patients with overt hyperthyroidism without atrial fibrillation, thyroid treatment is warranted to reduce the risk of this potential complication. Treatment of subclinical hyperthyroidism should be done in individuals older than 65 and with a TSH level of <0.1 mU/L. If the patient is less than 65 year-old and TSH >0.1, treatment of subclinical hyperthyroidism should be done if the individual has symptoms or has other risk factors i.e. heart disease or bisphosphonate treatment.”
Not testing free T3 for either hyper or hypothyroidism is a big part of the problem and is no probably due to penny pinching. Relying for the most part on TSH alone leads to underdiagnosis of both hyper and hypo as the feedback mechanism between TSH and the thyroid hormones can be faulty and this is probably not as rare as made out. I was tested for TSH, and the free Ts in hospital . My TSH was very low but the free Ts well within range but I was told I was overmedicated and the cardiologist was horrified I was taking T3 albeit a modest dose- no more than a fully functioning thyroid produces. He carried on as if it were cocaine! My own cardiologist says he knows nothing about the thyroid! Removing the T3 and reducing the T4 meds has not prevented my afib from progressing but has resulted in putting weight back on and my hair starting to thin again - though I suspect the Apixaban isn't helping the latter either.
I’m a stubborn fellow and have usually gone my own way with prescribed medication. Not that I would ever suggest that anyone else should be as foolish as myself in this matter.
I firmly believe that the afib attack I was taken to hospital with was due to being prescribed Cipro for a suspected UTI. The previous year a similar episode had occurred after being exposed to Cipro but the runaway heartbeat and palps only lasted a couple of hours and by the time I saw my GP the next day all was normal. The trouble with FQs is that once you have a reaction it can mess up your tolerance of drugs and even food that your body was happy with before. I have gradually put up my levothyroxine to just under what I was taking with the combo of Naturethroid / levothyroxine before but I have never dared go back on the T3. In 2017 there was a reformulation of the standard levothyroxine made by Merck here in France. Lots of people who had been stable for years developed problems with the new formula. I had my next afib attack so I think the Cipro exposure has made me very sensitive to any changes. My TSH has also had wide fluctuations for no apparent reason.
I believe it to be responsible for my lone AF. I was treated for years with a high dose of Levothyrox ( 150)after a sub- total thyroidectomy. All the Professor of Endocrinology of a big hospital said " if your heart gets a bit excited take these" and gave me a prescrition for something like a anti anxiety pill. Never took any. But he never explained the link with the heart. After my operation I had a fast pulse. I eventually developed PAFib. My cardiologist lowered my dose saying a low TSH was bad for the heart. But the objective of the endocrinologist was to stop the nodules I developed turning malignant (the thyroid grew back with more nodules). I would love to see a savvy GP who could link the two and follow me .Sorry for the long- winded reply but I feel I'm in a gap trying to juggle 2 pathologies being treated separately but are linked!
Thank you Lilypocket. I wonder if it would be worth writing to your endocrinologist to highlight your very real concern. In my experience, the endo medics are rather more sympathetic than the cardios. Even better, if you can catch the attention of the Professor or a research registrar in the department, the prospect of a case report to add to the CV, may galvanise their response.
They just don't work together. 150 Levo is not a high dose. There are plenty around on 200 or more. I'm just moving up to 150 alongside my 25mcg T3 that I have to buy. I get my prescription for it from a private endo who does seem to understand the importance of T3 for Afib patients thank goodness.
Before I was diagnosed with AF - in year before when I was getting really unpleasant palpitations (not necessarily AF) it certainly coincided with my thyroxine tablets being doubled (this was done because I was feeling very tired and it was thought by the GP that the low dose I was on wasn’t sufficient). Without making a connection - this then started a period of really horrible palpitations I had for around four months. Another GP made the connection and stopped the thyroxine altogether until I had blood tests and he had kindly fast tracked my cardiology appointment. Naturally, the situation became much better - I still had random ectopics but far less so - and here’s the thing: I still haven’t re started thyroxine because my regular blood tests show that my levels are normal! I’m now wondering whether I ever needed it in the first place - I’d been taking a low dose thyroxine for ten years! Subsequent blood tests remain normal. I’d be very wary of ever taking it again now.
Low dose. What does that mean? Low dose just shuts our own thyroids down and makes us worse. When on medication we need a TSH of around 1 or below. If it's higher then the dose needs to increase. It's usual to have a rough ride with Levo as dose increases at first, but essential. We should start on 50mcg and retest in 6-8 weeks. Then increase by 25mcg a day and retest in 6-8 weeks and so on until we feel well. We only ever increase by 25mcg and we must be retested and adjusted until our TSH is around 1 or below or we are just making it worse. GPs know so little about this and sadly that goes for many Endos too.
Well years ago l had a partial thyrodectomy to remove a benign tumour normally have a yearly blood test for this, however they have never called me after having this so presumably I’m ok But l do suffer from A Fib
Badly diagnosed and terribly badly treated hypothyroid patient here. Those threads over on the related boards are absolutely right. The standard of thyroid diagnosis and treatment in the UK is terrible. Also you just can't get prescribed T3 if you need it.
Endos threaten all hypos with AF if they take too much hormone. Well it's just as likely to cause AF if your T3 level is too low for you. Not for the reference range, but for you as an individual. But they won't test T3. So we have to pay for our own tests and then the doctors ignore them. Some of us have to pay for a genetic test to try to work out what's happening when we don't respond to Levothyroxine. Then the doctors say they don't understand the test and ignore it! It's criminal what they do to thyroid patients who don't do well on bog-standard, cheap as chips Levothyroxine.
So it's not just too much hormone to watch out for. It's too little. And sod the reference ranges, we need to go by how we feel. So many are kept sick because doctors do nothing other than test a pituitary hormone called TSH and from that deduce your thyroid status based on a far too wide reference range.
It's not even as if T3 and NDT were expensive. I've imported Armour then Naturethroid from the US for years - my husband still takes the Naturethroid . I blame a prof Toft. He was a developer of the TSH test and said during the start of the controversy over combo treatment in the late 90s " the science is settled ". Well anyone who says that is not a scientist.
Ha! Sorry Hidden you have hit the Mother-load of my bitterness with this post. I am so over ridiculously inadequate doctors putting the fear of god into us if we digress from their damaging methods and ideas.
I have to pay for the help I need. Apart from that I know far more about hypothyroidism than they do and the AF connection is very real at both ends of the scale. There is good work out there for us from the Canadians. Here's a link.
This is a good post. I agree with many of the others here. The primary Drs just assume your thyroid is okay if your lab tests show you are in the "normal range". The one size fits all. 🙄 I've asked my GP. All she does is stare at her computer. No answers. I brought it up to my cardiologist along with maybe some more in depth testing for deficiencies of nutrients and I thought his head was going to implode. Same when I asked him about the vagus nerve. It amazes me that these Drs don't want to consider these very important tests. But here in the USA the insurance companies rule everything and don't pay for these tests. Plus too many Drs are pills and procedures and nothing else. 🙄 And who suffers.... We do.
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This is interesting- I have h-pylori
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