palpitations-a cautionary tale: I’ve had... - Thyroid UK

Thyroid UK

137,904 members161,723 posts

palpitations-a cautionary tale

Pearlteapot profile image
43 Replies

I’ve had palpitations since starting on levothyroxine and I’m under medicated. When I give the doctor a list of my hypo symptoms (with objective of getting an increased dose) I include palpitations. I was under the impression that palpitations are a well known symptom of being hypo/under medication and that the doctor would say ‘oh yes, we better increase your dose before your heart tissue suffers’ or something.

Wrong. Three doctors have now responded by saying palpitations are inconsistent with my biochemistry (hypo) and must have a cardio work up before dose increase. So stuck on lower dose and guess what …. Palpitations. I’m not sure logically how that circle will ever be broken since if the cardio work up does indeed show palpitations they will presumably refuse to increase my dose.

I wish I had never mentioned them and stuck with my list of all the other symptoms.

Or perhaps 3 doctors are right?

Written by
Pearlteapot profile image
Pearlteapot
To view profiles and participate in discussions please or .
Read more about...
43 Replies
Charlie-Farley profile image
Charlie-Farley

SeasideSusie ? SlowDragon ?

crimple profile image
crimple

Pearlteapot, I used to have palpitations on Levo only. I am a poor convertor due to Hashimotos disease. Since having 15mcgm of Liothyronine added to 100mcgm of levo I no longer have palpitations. I never mentioned palps to my GP! I don't think they should be mentioned in the context of Hypothyroidism within NHS. Equally, I ignore my very low TSH reading, been like that for 10 years and only look at T4 and T3 readings. I do hope one of the admins can point you towards some research papers and that you get your meds increased.

Pearlteapot profile image
Pearlteapot in reply to crimple

It’s just a warning or comment really. I won’t be able to change my dose till after the cardio investigation now. It has been increased 7mcg meanwhile 😌

fiftyone profile image
fiftyone

I have heard that palpitations can arise with too lowT3 as well as, perhaps, with too high, but not sure of this myself.

I had a 6month period of atrial fibrillation. One or two doctors automatically suspected my high dose of levo. However, the problem stopped suddenly after six months and I continue to take a high dose of levo. Have had perhaps two one-day episodes in over 2 years. Take beta blockers if it occurs. So not all high heart rates are due to levo dose. I feel that doctors sometimes like to make the 'quick and easy' diagnosis.

helvella profile image
helvellaAdministratorThyroid UK in reply to fiftyone

Be aware that beta blockers can affect things like T4 to T3 conversion. Some more than others. This is well known for propranolol.

Pearlteapot profile image
Pearlteapot in reply to helvella

pubmed.ncbi.nlm.nih.gov/168...

Here is a link for anyone else who is interested. A bit depressing that when I need more t3 for my heart I’m prescribed a medication that will actually reduce it.

Thanks helvella. I already was against taking it for bradycardic reasons but this new info seals it.

helvella profile image
helvellaAdministratorThyroid UK in reply to Pearlteapot

Over thirty years and it still has not penetrated general practice.

Worse, it has not penetrated much endocrinology and at least some cardiology. Though, to be fair, some cardiologists do seem now to appreciate that adequate T3 is important.

Pearlteapot profile image
Pearlteapot in reply to helvella

This thread has been really useful for me. It now seems clear that my best bet is to go fully armed with articles etc to the Cardio appointment and try to get them to say (1) no tachycardia and (2) that any palpitations might be due to low T3 in the light of my doses and biochemistry tests during this period. Then take that comment back to Endo. The issue I think is that Endo won't prescribe T3 while there is a cardio risk and will obviously defer to expertise of cardiologists. So the key is to get the cardiologists to agree about the effect of thyroid on the heart, rather than the endocrinologists.

I'd like to try a tiny dose of T3.

BiscuitBaby profile image
BiscuitBaby in reply to Pearlteapot

HiI had terrible palpitations when I was first diagnosed. It was what drove me to go to the Dr. That and missing periods. They never really stopped until I went on t3. Now I only get then mostly after exercise or occasionally in my bed. I never have the sensation of a racing heart and my watch certainly doesn't indicate my heart is racing. In fact my heart rate has recently dropped. I think your ploy to arm yourself with evidence is a good one. But of your doctor is anything like mine they won't listen anyway! Good luck! Hopefully you'll get sorted.

Pearlteapot profile image
Pearlteapot in reply to BiscuitBaby

I imagined I had been referred to see a cardiologist, a person I could actually talk to. It turns out it was just a referral for a 48 hour tape. I think my best hope is that it reveals no palpitations so that they will be willing to raise dose.

Why has your heart rate gone down again do you think? I thought mine would have increased by now but it hasn’t really. Still got rhr around 50.

BiscuitBaby profile image
BiscuitBaby in reply to Pearlteapot

When you're dealing with the NHS all sense goes out the window! What you think will happen and the reality are usually poles apart. I had my t4 reduced fro 125 to 75 and my t3 increased from 10 to 15. The drop in my heart rate coincided with that! Interestingly, my palpitations are a bit less now. Still triggered by exercise now but less often random. I hate the feeling. I'm glad your doctor is investigating. I had the 7 day halter when I was diagnosed and every time I mention it now I'm ignored. But I think they think I'm a hypochondriac despite never being at the doctors before this all happened.

Pearlteapot profile image
Pearlteapot in reply to BiscuitBaby

Exactly. If I was a hypochondriac I would have been at the doctor asking about symptoms years/decades ago. I only contacted them when on my knees with a TSH of 71. Makes me mad when they suggest fatigue, swelling etc’ just part of getting older’. They can jog on. Before starting levothyroxine I was spending my summers climbing mountains with a full camping pack, no heart issues and problems. I often regret starting on this medication and wonder if my natural thyroid production would have improved by simply correcting the D3 and other deficiencies.

Anyway, interesting that your heart rate dropped when you decreased T4/increased T3. I would have assumed it would be the other way around. But palpitations stopped. That seems like a good outcome? I thought that there is nothing inherently bad about a low heart rate unless it means the heart is struggling with pumping harder. But if palpitations have ceased then not struggling? Is that too simplistic? Plus you probably have good heart muscle because you are or were recently fit.

SeasideSusie profile image
SeasideSusieRemembering in reply to Pearlteapot

That article is specifically about Propranolol. There are other betablockers. I am on Bisoprolol because I have sporadic tachycardia (not connected to my thyroid or thyroid meds) and I test often enough to know that it does not affect my results in any way. With the caveat, of course, that everyone is different.

Pearlteapot profile image
Pearlteapot in reply to SeasideSusie

Yes it's about propranolol. That is what I was prescribed. It's useful for people who definitely need betablockers to know that there are others available that may not affect conversion but I guess each one needs to be investigated for that risk.

SeasideSusie profile image
SeasideSusieRemembering in reply to Pearlteapot

That is what I was prescribed.

This begs the question why is the doctor or pharmacist not checking that it's OK to take when on thyroid meds.

Not sure if the information is in the Patient Information Leaflet but the patient should be reading this anyway.

Pearlteapot profile image
Pearlteapot in reply to SeasideSusie

It was prescribed by a consultant endocrinologist who is on the Thyroid UK list and seemed rather reassuring in other respects. I haven't looked at the leaflet because I have not taken the script to the chemist yet.

humanbean profile image
humanbean in reply to Pearlteapot

I haven't looked at the leaflet because I have not taken the script to the chemist yet.

This website : medicines.org.uk/emc/ contains lots of Patient Information Leaflets (PIL) and Summaries of Product Characteristics (SmPC)

For Propranolol PILs and SmPCs:

medicines.org.uk/emc/search...

Note that emc stands for "Electronic Medicines Compendium". The website doesn't contain every single PIL or SmPC for every product prescribed in the UK. Some manufacturers keep their documents on their websites. But if you haven't had your prescription dispensed you won't know the manufacturer anyway, so just find one that fits your criteria. All PILs for Propranolol will be similar, for example.

Pearlteapot profile image
Pearlteapot in reply to humanbean

Thanks humanbean I have read the PIL now. No mention of T4/T3 conversion. Unless I start having a fast heart rate in the near future I very much doubt I will go and collect the prescription. My heart rate is already slow. I need more T3 not less.

LAHs profile image
LAHs in reply to Pearlteapot

Just a two cents worth here. Go get your Selenium level measured. If it is low you are probably not converting your t4 to t3. You need selenium since it is the catalyst for the T4 to T3 conversion. This would be a way to squeeze the lasts drop of T3 out of your T4 (which you are getting). While you are measuring your selenium also get your Free T4 and Free T3 measured so that you have a baseline. If it turns out your selenium is low get it from Brazil nuts rather than a pill - but that is your preference, I just think that some (quasi) heavy metals should be taken or at least introduced lightly.

blondpalomino profile image
blondpalomino in reply to Pearlteapot

Hi Pearlteapot, I have no thyroid and am taking Levothyroxine and T3. I was prescribed Propranolol for migraines years ago, and had to stop taking them as soon as I started them as they gave me such bad palpitations I thought I was having a heart attack! I also cannot tolerate more than 75mcg of Levo, as any more and I have palpitations and sky high blood pressure, so I have T3 as well which doesn't cause any problems.

It may be that you cannot tolerate too much thyroxine either, and should try and get an appointment with an Endo to see if they can prescribe some T3 as well.

Flecmac profile image
Flecmac in reply to SeasideSusie

Hi excuse me for dropping in on this post. I am on propranolol for migraines. I am on 10mcg Liothyronine and 63mcg levo. Recent tests show T3 lowering, T4 a tiny bit. I wonder if this is due to propranolol? I don’t want to stop it as migraines have reduced to occasional. Not sure what to do and don’t know if Bisoprolol would help migraines. Thank you.

Pearlteapot profile image
Pearlteapot in reply to Flecmac

Hi. You should make a separate post, including your latest test results, as your question will not get picked up from the middle of this thread. Has the reduction in T3 made you feel symptomatic?

Flecmac profile image
Flecmac in reply to Pearlteapot

Thanks.

Flecmac profile image
Flecmac in reply to Pearlteapot

👍No

bookish profile image
bookish in reply to fiftyone

Perfectly possible that my palpitations are due to something else of course, but can't be overmedication as not on anything - whereas T3 is pitiful! So low T3 seems a reasonable suspect. Cheers

AndiRiley profile image
AndiRiley

Low heart rate and palpitations so bad that my body shook were a major symptom when I was hypo. Taking a dose of T3 always stopped the palpitations within about 20 minutes.

Pearlteapot profile image
Pearlteapot in reply to AndiRiley

Why don’t doctors know this? I was given beta blockers but my heart rate is 58. I’m not planning to take them. Palpitations are treated as a problem of high heart rate even when they have taken your pulse and observed a low heart rate. I Can’t get my head around it. Glad to know that T3 solved things for you. There have been several articles linked here recently that link t3 and heart palpitations. I think/hope that’s where I’m heading. I think he’ll prescribe it but not until I’ve had my cardio work up whenever that ends up being. From his professional point of view I can actually understand taking the path of least risk until I’ve had an angiogram. From my perspective, a needlessly miserable summer ahead of me, struggling to perform at work because I’m so tired.

helvella profile image
helvellaAdministratorThyroid UK in reply to Pearlteapot

Why don’t doctors know this?

First, I think many know that high heart rate and palpitations are often associated with hyperthyroidism.

Second, they see low heart rate common in hypothyroidism.

They then make an assumption.

As I see it, any inappropriate level of thyroid hormones will affect our whole bodies. But the precise effects might less obvious or not what a simplistic guess will suggest.

AndiRiley profile image
AndiRiley in reply to Pearlteapot

If you leave it too long, the heart may re-model itself due to the unnatural heart pulsation and end up with an enlarged left ventricle. This happened to me. I self medicated with T3 and lo and behold my heart re-modelled itself back to a healthy state with no enlarged left ventricle. My NHS cardiologist was gab-smacked and discharged me - he'd never seen such a recovery. Why can they not learn?

Pearlteapot profile image
Pearlteapot in reply to AndiRiley

That's really interesting, thank you. I was wondering about long term damage. What kind of time scales are you talking about? This started in March this year, when I was started on 50mcg Levo., so by the time I have enough medication, maybe 6 months of my poor heart struggling.

LAHs profile image
LAHs in reply to AndiRiley

Wow, that's pretty impressive and interesting. Well done.

radd profile image
radd

Pearlteapot,

Many of us have been through it. Not only keeps us symptomatic for longer but is a terrible waste of resources.

serenfach profile image
serenfach

I had really bad palpatations when I was on a dodgy batch of Thyro-Gold. GP listened to the heart, fixed me up with a 24 hour monitor which showed huge pulses and then flat for a bit (over twice what is should be). What did they do? Absolutely nothing, apart from saying "oh dear, thats not good".

I changed to Thyroid-S and the palpitations went.

Beau55 profile image
Beau55 in reply to serenfach

Hi seren, was this by any chance a batch after they went out of stock during covid? I noticed my thyrogold went a bit weird when I finally got hold of some and never managed to find a good dose again. I also started getting all my hypo symptoms again!

serenfach profile image
serenfach in reply to Beau55

No, it was before that, when many on here were saying the same thing. I looked at getting a lab to examine the pills to see if they contained any thyroid products, but the cost was huge. They were from the USA

Batty1 profile image
Batty1

Seems this is a standard medical procedure patient says they have pain and they must do a flurry of blood test and X-rays and when neither show anything its all in your head …. Thyroid issues are treated the same way your labs fall in range although low in the range and your still struggling but instead of trying and increase in dose they assume it’s something else and do a ton of test and when those come back good its then said its something your doing…. It’s ridiculous medical practice but sadly its what they do…. Definition of insanity: Doing the same thing over and over and expecting a different result.

Polly91 profile image
Polly91

I too had palpitations when on Levothyroxine only and due to poor conversion I had relatively low T3 despite TSH being v low. Once optimally treated (in my case metavive) the palpitations stopped.

Good luck to you

Lindzlouise profile image
Lindzlouise

I'm wondering if my heart beat going to 200 has something to do with thyroid lm hypo but gone other way since episode ..no-one tested t3

Pearlteapot profile image
Pearlteapot in reply to Lindzlouise

Have you tested your own T3 levels? Have you tested your adrenals? What did they test?

Lindzlouise profile image
Lindzlouise in reply to Pearlteapot

No I haven't fir 4 years

Angelamargaret profile image
Angelamargaret

Potassium helps with palpitations worked for me good luck

LAHs profile image
LAHs in reply to Angelamargaret

I agree, but try eating bananas rather than taking a potassium pill because an overdose could be fatal.

mohster profile image
mohster

Hi the doctors are correct as palpitations are more likely if your hyperthyroid not hypo thyroid. But they need to investigate as it may be atrial fibrillations or something else that is more common with hypo which you are thinking are palpitations, that is what I thought was happening to me and found it was heart block and atrial fibrillations.

It could also be that your swinging into hyper as your thyroid tries to correct the situation and too much hormone is produced in response to high tsh (and on top of that your taking thyroxin )and that is causing palpitations. The problem is that it takes time for medication to make changes to thyroid function and sometimes thyroxin causes a temp hyper situation but is not picked up for months.

Either way its best to let them check things out and find out what is going on. The endocrine system is complex and gps arnt always clued up best to let the endocrine consultant evaluate things.

The other thing to evaluate is stress, because the adrenals can be a cause of palpitations if you are suffering from adrenal problems, (which normally go hand in hand with thyroid problems) such as adrenal insufficiency, possibly taking ashwiganda which helps restore the bodies hormones to homeostasis may help.

You may also like...

Palpitations... no like!

am I saying I want more or need less levo? I’m only on 75mcg. Can I get palpitations if I’m hypo?...

Palpitations

high dose of Steroids, due recurring Mouth ulcers, which I'm not sure were coursed by my under...

Anxiety and palpitations

anxiety too but feel if I say any of this the endo will say I am over medicated still. Does anyone...

T3 advice - heart palpitations

and built up the dose over 2 weeks. I got hyper symptoms and decided to lower the dose to half a...

palpitations

weeks and I’m worried as I’ve not had them this bad before they seem to be worse when I’m resting...