Just had tests done - ECG, blood tests, chest Xray and waiting to see g.p.
Wondering what I should expect to come out of consultation and do I expect referral (have work private healthcare so should be available if needed).
Background is
Hypothyroid on T3
Haemochromatosis (carrier only)
On HRT
Had palpitations for years when next T3 dose was due that went away when took it, found this harder to manage over last couple of years since started HRT. Now getting it lots so tried increasing T3 but probs just made worse and now gone back down again.
Thought it was either side effect of HRT or chest infection post Covid last year causing random light cough, tiredness, breathlessness, heavy legs, but appointment with gp last week said no it is AF.
Health watch says AF when test ECG with that too (altho realise probs not that reliable), b.p not increased (<130/80), HR resting 60 -70 and on walking 90 -140 . Temperature normal.
What should I expect? Thanks
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AKatieD
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Hello Katie, I’m no medic but apart from the Haemochromatosis and HRT, like many others here, I have experienced most of what you are going through. The thyroid can have a significant effect on AF whether it’s under or over active and generally most cardiologists/Electrophysiologists (cardiologists who specialise in arrhythmias) will encourage you to get that sorted out before anything is done (apart from medication) to treat AF. The ECG is the most accurate test for determining if you have AF and it sounds as though your heart rate, certainly at resting, is pretty good and in range but as it’s irregular, it’s likely to cause the symptoms you describe. The chest X-ray is probably to see if your heart has enlarged which is not unusual but likely to return to normal once a treatment plan is in place. One of the most important issues is to assess whether or not you should be taking an anticoagulant and that is done using CHADsVASC (try googling) as AF does increase the risk of having a stroke. It is always worth being referred and if you have insurance you would be daft not to because that would enable more relevant tests such as an Echocardiogram but it will be interesting to hear what others suggest….hope this helps.
That is very helpful thanks. Referred to any specialist in particular or cardiology in general? Is there a good consultant list? I live not too far from Papworth so presumably there
If you’ve got private healthcare, I’d just google cardiologists and preferably electrophysiologists near to you and Papworth, or if you need a GP referral for private work, ask your GP to refer you straight to private and bypass the NHS if possible. It could take many weeks or months otherwise to be seen by the NHS and get any investigative work done.
Your GP may want to put you on medication, but might wait for a specialist to advise on that, I’m not sure.
I have no personal experience but it has a very good reputation. I’ll find a link to the AF Association web page which lists specialists but I’m just about to have my brekkie on the first day of my holidays so give me an hour or so 😉
Always best to see an EP (Electrophysiologist if possible…..
As you have private healthcare I would ask to use it and get referred to an Electrophysiologist (EP) I was referred to a cardio - there wasn't one in my hospital so saw a nurse who was on the phone to one in a hospital 60 miles away and was given apixaban and bisoprolol. Not good with bisoprolol so eventually used my private health care to get to see a cardiologist and also got various tests done privately - had to wait for 5 months to get them at hospital - despite calling out ambulance twice or three times in the night due to AF and resulting low HR from bisoprolol - once down to 36 and we honestly both thought I was "slipping away" no tests just kept in for a day and monitored but got them the same day I saw a cardio with private health care just a month later and eventually got to see an EP privately and then put onto his NHS list. This was before Covid so any of the hold ups in seeing a cardio and unavailability of an EP and even cardio (my GP told me it would be a long wait to see a cardio as we had been without one for 15 months) in our area was just normal for our area. Thankfully since 2017 things have got slightly better as regards availability of specialists but now can't get to see them because of the backlog! You can't win.
You will need to fill in the top bits to narrow the search down to country and area.
The list is not conclusive, my EP isn’t featured, it’s just a guide and only includes consultants who have asked to be included so they are not recommendations as such……
Hi, I followed link to table but no matter what I put in at top the table just gives me a list of medical people from around the world. non of my narrowing, eg london, cardiac surgery etc makes any difference. The surgeon who did my open heart valve repairs at the Brompton is not listed, nor any of cardios I have seen at Birmingham. If I put in the names of cardios I've seen the table just closes down. On the face of it, it would appear from the table that the people who've treated me, surgery and ablations don't exist, perhaps only a bad dream, but I have the scars. Is the table of any value??
No I could not get it to filter either but it os easy enough to find locations near you.
As Flapjack said, the consultants have to elect to be on the list and so not all are.
I just used it to pick a couple from the local area to narrow down the list a bit as there are loads and I did not know anything about any. A place to start I suppose.
My understanding of the BUPA Consultant finder is that those listed have agreed (mostly-but not always - so check details) to stick within BUPA’s fee structure so you (or your company) shouldn’t be charged extra…
Personally with insurance and living near Papworth I would see someone there. Good luck.
Hope you get sorted Katie. Their best bet is to get you to wear a 48hr Holter. This where you are wired up on a small portable device that tracks your heart all the time & stores the reading. Intermittent Afib is often missed on ECGs as it comes and goes. ECG trace is very brief in time so monitoring your heart and recording it like this is more likely to pick up heart irregularities that are not constant.
As far as T3 is concerned. Are you on a stable dose and do your blood tests shown that it is keeping you withing the Ft3 range? Are you only taking T3? T3 is fast to absorb and therefore has tenancy to spike and dip in levels because of this. Cardiologist don't like that. Therefore taking it split into several doses over the day helps to reduce this. NDT has a much slower uptake so is more even and slower with it's increase & drop in levels. The less spikes of T3 you can avoid the happier your cardiologist will be.
At the moment it feels like AF happens almost all the time. Have not managed to get watch reading without it showing up over last week, for example.
I used to be on NDT but found there were problems with the brands - took one for while, then potency problems arose, so moved to new one and then that had a problem, etc. At that point gave up and did not want to keep feeling ill so went for seemingly more reliable T3 (multiple dose 3x day).
Problem I have found is the HRT (and change of dose) has messed with my thyroid levels and over last year been struggling to get it right. This is when AF/ feeling unwell has occurred.
The watch readings aren’t always reliable. In my experience they will falsely suggest AF when it’s a lot of ectopics going on in one 30 second trace, but they have been accurate in identifying AF at other times, so you really need an experienced eye to look at your tracings. If you have any cardiology appointments coming up I suggest you take some printouts with you.
I don’t have any experience of thyroid problems but many people here have, and there seems to be quite a tricky balancing act in getting the meds right, and it does seem to have an influence on arrhythmias. I’m sure the kind people here will share their experience.
I have haemochromatosis and i have venesection treatment. Having the gene isn’t the same as having the condition though. If you overload iron, that’s haemochromatosis, in which case you’ll be monitored and treated, usually at the haematology department. Carriers can overload and require treatment but typically don’t, so if you’re not overloading and not in active treatment, you needn’t worry unnecessarily. Just keep an eye on your ferritin levels in case they go out of range, and of course avoid iron supplements (as I’m sure you do). I am undergoing venesection treatment at the moment and it’s certainly not my idea of a party. It didn’t prevent AF and made no difference to my ectopics.
I’m also on HRT for osteoporosis and it’s been helpful, but I had a relatively symptom free transition into the menopause, not many hot flushes and I didn’t go mad or anything like that. We all have very different experiences and very different reactions to HRT, and the reasons for taking it differ too. So far my BP is low and my BMI is at the low end of what is considered normal and my blood work is good (except all my iron indices are way out of range right now) so my consultant is happy.
A diagnosis of AF is a lot to get your head around, especially if you have other long term conditions to manage, as many of us do. Many people will advise on their various lifestyle tweaks and changes, but again, we’re all highly individual and have different health priorities. I feel uncomfortable saying ‘do as I do’ because there’s more than one right way, and it’s far more important to do what we can sustain over the long term.
G.p. phoned and confirmed AF shown on ECG and wanted to start blood thinners etc straightaway. Mentioned things on Hidden 's CHADsVASC list and concluded score of 1 for being female but wanted to prescribe meds anyway.
She was not keen to refer but agreed and so I now have appointment at Papworth hospital with specialist EP for next week (so will hold off pills for now).
As for HC, just keep giving blood from time to time to keep ferritin down. Altho if I now have to declare heart problem, I am not sure they will take it anymore.
Thanks for all the help so far everyone, I would not be moving forward so quickly without it.
That’s very good that you can see an EP so quickly. It’s better to have a specialists opinion though I found that they’re not all that bothered about AF unless you’re very symptomatic. I too have a score of 1 for being female but the consultant said there was no need for an anticoagulant at the moment. My AF episodes are infrequent so the benefits may outweigh the risks at this stage. Good luck at your appointment.
Glad you’ve got an appointment for next week. I too score 1 just for being female, but it’s not a trigger for anticoagulants and I’ve been told ( by an EP and a cardiologist). If you are younger than 65 the 1 for being female is disregarded. That’s also what I’ve been told. I’ve asked a few times too. I don’t need to take them until 65 ( I’m 57). My episodes are also not frequent though like Autumn Leaves. Good idea to hold off until you see a Specialist first as they might have a different view.
You should ask or get an ECHO of your heart and 24 hr heart monitor.
The ECHO will show any defects including enlargement, whether valves woeking etc and latter if AF episodes and type.
It sounds as if you take no meds for AF.
H/R and BP great but you can still have AF on low H/R and BP. It just means your heart is irregular.
My tests 1 year 3 months after Stroke with Af caused by Thyroid Cancer was diagnosed as rapid and persistent. LV enlarged chamber ad now controlled with CCB Calcium Channel AM and BB PM.
Cancer removed and in Feb my 3rd Neck Scan is clear.
It may be a Rhythm med needed if your symptoms are high on how you feel. Some folks live with AF without meds.
Why aren't you taking the synthetic hormones T4. Read your TSH level. Hypo
is under .4. T3 is 3.9 - .... sorry I forget . I am 4.0. T4 total 22.0 top of normal
which tells me I am taking enough. TSH I keep between 1.0 - 2.0.
And I take 1 x Synthroid 100 and 1 x Syn. 25. I weigh between 80-87kgs.
Licourice interferes with thyroxin and have no food 4 hours before taking and
4 hours after of iron, dairy.
I see the change if I take anything that interferes like others statin over 20mg or steroids.
One gets used to it. 3 years and 3 years of cancer free.
Then there is AF meds. CCH AM and BB PM. Keeps me Controlled H/R under 88.
I'm 74 with counting number, female, 1 AF, 2 Stroke 3. So PRADAZA 110mg (heart problem and age) x twice a day.
I chose it because "can be reversed in case of accident causing bleeding".
I take Colofac 140mg with large glass of water when necessary before b/Fast for Constipation.
Poly Gel 4 times day for dry eye. (nothing on blotter test. Eye Spec prescribed.
Flixonase - Nose spray x 1 . Cyst in Sinus area showing on my C.T.
That's me.
Allow enough time to assess meds first. Ablations scar your heart with risk. Cardioversion under sedation surgeons stop your heart.
My heart has never been cardiversion done as I had discovered thyroid cancer and they never did an echo. An xray does not see all behind chambers correctly as mine was assessed as normal size but the echo saw behind and it was noted that the back chamber was indeed enlarged.
You have a lot of results from tests and meds to weigh up.
I was delighted on friends farm that I can now walk down to the jetty and back whereas in 2020 after my thyroidectomy and on Metroprolol could only walk 25 yds.
I'm on CCB and BB with lower dose of PRADAXA 110mg x twice my anti - coagulant.
Thanks for the interesting insight. I don't know about the AF meds but I would prefer physical solution to pharmacologic if possible. But I do know a lot more about thyroid.
T3 is the active hormone and you need to convert any T4 (levo) to T3 to be effective. But i have the genetic fault that reduces T4 to T3 conversion making T4 is less effective, so I take T3 only.
Used to take natural desiccated thyroid which is also good but there have quality control issues with several brands over recent years, which caused variable potency so I have stopped using them.
Once you are being treated with thyroid medication, TSH is not important. TSH is part of a feedback loop that tells your body how much circulating hormones are present and so how much it has to make. Once you can't make enough of your own, and add in external hormone pills, you shortcut this loop and so there is no point in taking TSH into account (most gp do not seem to know this).
What matters is the level of actual circulating hormones and how they make you feel. A good resource is the website Stop the Thyroid Madness. But it sounds like you are happy with your levels.
As for me, nearly 60, walk 3 miles per day with dogs, so doing ok for now and hoping to keep it that way. Preferably be able to get back to slow running, but that means I need to get rid of the breathlessness if at all possible.
Having no thyroid hence not making hormones is me.
When that happens TSH is the important element to be monitored.
Top USA surgeon who wrote The Head and Neck Atlas explains all the different operations and he specialises in removal of thyroids and lymph nodes and does botched up operations again.
He reports those who have had cancer and removal should keep TSH level at low normal. So TSH1.0-2.0 is ideal. Before cancer my TSH ran at 1.9-2.0.
Suppression is indicated for medium - high risk patients as cancer cells left can grow on the TSH serum. But if older or with a heart condition suppression is not recommended.
Listed thyroxin my Synthroid brand is the only brand that you can cut up and I take mine by dissolving under the tongue.
Food piece of banana within an hour.
T4 is the total amount of thyroxine I am taking and 22 is at the top of normal. On weight.
The Pituatary Gland I still have I understand it signals to thyroid to make the hormone.
The world has been manufacturing synthetic hormones for almost 100 years.
Having your thyroid means that it could be making thyroid hormones a little.
I can remember I was way up at TSH 12 until those hormones were used up within a 2 days and I had to take up to 150mg of thyroxin to reduce it.
I read about pig thyroid. No pig organ is the same. it could not be measured and NZ does not qualify any of it. I did talk to the chemist after op for alternatives. I did not any information on risks of taking anything else. Like you alternatives to meds I was seeking.
Through that enqiry I learnt how magical is the thyroid!
AF is another hurdle. Control is the magical word.
Sounds like you developed AF from either hypo or hyper thyroid.
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