Levo & palpatations: Hi everyone I’ve been taking... - Thyroid UK

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Levo & palpatations

Sunnydays11 profile image
52 Replies

Hi everyone I’ve been taking levo for 4 months and have been getting palpatations day and night could I be allergic to levo? My gp told me to take 25 instead of 50 but it’s still happening. I asked to try something else he said there is nothing else! I’m new to taking thyroid meds is this right ? I’m feeling down and worried would love some advice many thanks :0)

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SlowDragon profile image
SlowDragonAdministrator

Palpitations are frequently due to being UNDER Medicated

50mcg levothyroxine is only a STARTER DOSE

Bloods should be retested 6-8 weeks after each dose change

Were bloods tested after 6-8 weeks on 50mcg

Which brand of levothyroxine are you currently taking

Many people find different brands are not interchangeable

Teva brand upsets many people

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels and thyroid antibodies if not been tested yet

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Sunnydays11 profile image
Sunnydays11 in reply to SlowDragon

Thanks I ended up in A&E last week tests were all normal but low vitamin D also on HRT could that cause palpatations ?

SlowDragon profile image
SlowDragonAdministrator

Can see from previous post that 50mcg dose was Teva initially

Did you get brand changed to 2 x wockhart or 50 Mercury Pharma or Accord (Almus via Boots or Northstar via Lloyds)

Sunnydays11 profile image
Sunnydays11 in reply to SlowDragon

Was changed to mercury phama. Doctor at hospital said my thyroid test was normalBut palpatations are nasty when they are all the time don’t no what will stop em .

SlowDragon profile image
SlowDragonAdministrator in reply to Sunnydays11

What were test results BEFORE starting on levothyroxine

What were results after 6-8 weeks on 25mcg

Same question after 6-8 weeks on 50mcg

Low vitamin levels can badly affect thyroid levels too.

Low magnesium can be linked to irregular heart beat

Are these palpitations fast heart rate or irregular heart rate

Do you wear a Fitbit or equivalent

What vitamin supplements are you currently taking

Sunnydays11 profile image
Sunnydays11 in reply to SlowDragon

Hi sorry for delay replying. I don’t no what my level was before going on levoI have been taking vit tablets but stoped em because thought maybe cause of palpatations. Doctor just told me to stay on levo but take it every other day. Think he doesn’t no much about thyroid.

Hopefully I’ll feel better soon thanks for your advice x

SlowDragon profile image
SlowDragonAdministrator in reply to Sunnydays11

Come back with new post once you get hold of all test results

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.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is under 2

When adequately treated, TSH will often be well under one.

Most important results are ALWAYS Ft3 followed by Ft4.

When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)

Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works

If palpitations are due to being under medicated, reducing dose will make it worse

jacobite33 profile image
jacobite33

Hey Sunny hope your good!

I ended up in hospital more times than I care to remember over a year.Once when I collapsed and other times with palpitations and heart racing off the scale.It is not a nice feeling is it and very unnerving! I was even diagnosed with an ectopic heartbeat and put on bisoprolol that never helped.I was slightly over medicated and once reduced the palpitations stopped but having other issues now as it’s too low.Got to the stage though I was hoping to get a free NHS tv with remote as I was in that many times

Be good to see what your results were before going on levo?

Tell you what though your in the best place for advice and understanding! These folks are fantastic and very helpful!

Hey SlowDragon hope your good! As ever I see your still in the thick of things helping and giving advice.Your a bonafide angel!

Stay safe folks and take care!

Dillongirl profile image
Dillongirl in reply to jacobite33

I agree - this Forum has been so helpful to me too. Thank you Slow Dragon.

Georgie120 profile image
Georgie120

Hi. I have frequent palpatations...cant exercise at all now my heart rate sores 😔 I was in 100 levo now reduced to 75mcg.Vit D constantly low so take supplements oral spray D, &B12, Mag spray twice a week on feet before bedtime and 2 brazil nuts each day for selenium. Its trial and error the body is a strange and wonderful thing. Good luck

jacobite33 profile image
jacobite33 in reply to Georgie120

Hey Georgia hope you staying safe and well!

Have you put up a thread with your blood results and brand?

Is the symptoms of palpitations and low vits not a sign of being under medicated?

M1ssmolly profile image
M1ssmolly

Hi,

I’ve been on Levo for 16 years and I always get palpitations day and night when I’m under medicated. It was in fact the main symptom that took me to Drs when I was initially diagnosed.

Unfortunately most Drs in my experience only link this to over medication. I recently increased my own dose when they started occurring again and hey presto they’ve gone 😐.

Auntyp62 profile image
Auntyp62 in reply to M1ssmolly

Yes I am the same, after many years I take notice of where my pulse is when I feel good. When undermedicated pulse drops and palpitations step in. Blood test show in range so gp says all ok but they are at lower end. Raise thyroxine so at higher end and pulse goes back to good and palpitations stop

M1ssmolly profile image
M1ssmolly in reply to Auntyp62

To be honest until this thread I thought it was only me haha. It’s a relief to know others have the same experience. My Gp wanted to put me on Beta blockers! I told him that I know it’s my thyroid condition causing it and he said that’s impossible. So I increased my own dose and it stopped them 🤨🙄

Auntyp62 profile image
Auntyp62 in reply to M1ssmolly

Gps seem to know less than us. My mantra is they will only understand when they all have it.lol

Sunnydays11 profile image
Sunnydays11 in reply to Auntyp62

Omg your so right lol

Dillongirl profile image
Dillongirl in reply to M1ssmolly

Yep, over the years I've been on beta blockers which made me feel even worse. December 2019 I was put on Mirtazapeine - a tranquiliser, sort of helped but didn't solve the problem. Strange to have the affects of one medicine medicated by another. Wish that the GP's training about thyroid problems included 'being open' to 'things that can't possibly related' Take care

LAHs profile image
LAHs in reply to M1ssmolly

Tell your doc this. Any little bit of anecdotal evidence might help them understand their subject a little better. I can understand that they think overmedication causes palpitations, but they probably don't realize under medication does also.

Dillongirl profile image
Dillongirl in reply to LAHs

Yep and that a particular medicine may have an ingredient that is an allergen.

LAHs profile image
LAHs in reply to Dillongirl

Yes, that too. Ask him to get a chemical or pharmaceutical analysis of the pills he is prescribing, it all helps.

vienna2010 profile image
vienna2010

I get palpitations when under medicated. I also used to get palpitations on levo and that stopped when I changed to NDT. However, the brand of NDT I take also affects how my heart behaves. So it may also be a question of the drug or brand not suiting you. It is trial and error to get to the right solution. Takes time so hang in there.

Jazgirl profile image
Jazgirl

Hi I noticed caffeine causes heat palpitations if taken within four hours of my thyroxine. Now have caffeine free tea in the mornings and problem solved. Hope that helps

Bread profile image
Bread in reply to Jazgirl

I cut out most caffeine a year ago and my palpitations only reoccur now if I eat a lot of chocolates or have a coffee with caffeine in it. Soy and too much salt also can gave an effect on me too.My results came back low tsh last time so I was asked to reduce my levothyroxine very slightly on alternate days from 100mcg to 75mcg and I am due another blood test shortly to check it again.

As I am generally feeling well at the moment I am reluctant to reduce my medication further as I know that doctors focus on low tsh due to concerns with bone density in older people. I go with the advice on here about low tsh and I try to follow a healthy diet, get as much exercise as my sore knees can tolerate and not worry too much.

infomaniac profile image
infomaniac in reply to Bread

Same here. I've had to cut out coffee, chocolate and most alcohol (trial and error has decreed I can take fizz with a bit of water in it thank God!) but it's worth it to be "normal" apart from the very occasional flutter.

Dillongirl profile image
Dillongirl in reply to Jazgirl

Me too, I now have no tea or coffee until a good 4 hours after taking levo. A nice cuppa tea in the afternoon does not pose a problem to me.

Goldenbeads profile image
Goldenbeads

Hi I know how you feel ! It’s very scary and makes you feel terrible. I thought I was allergic because happened straight away! So as I was borderline under active I came off it for a long time.

I started to get symptoms and checked again so felt I needed it . I have Levothyroxine 25 mg every other day and I have been fine. I hope you find the right levels for you. Putting your heart under strain is not good. My doctor took it very seriously luckily.

Sunnydays11 profile image
Sunnydays11 in reply to Goldenbeads

Oh that’s what my doc told me take it every other day !

Romvi profile image
Romvi

Hi, if you're having problems with your heart rate/ palpitations you need to get it checked out, it might not be your medication. I suffered for years sometimes they were really bad. Then I eventually found out I had SVT and had a cardiac ablation done. It was all to do with the electric impulses in the heart not working properly, I'm fine now. Have the odd flutter.

Sybilla14 profile image
Sybilla14

Hi. I have noticed that my palpitations go away when I supplement iron after a break of taking it. My ferritin level is not deficient but fairly low, always below 70. I take iron every day now and it has also helped with the sensation of heart rate in my head/body, which I used to get when lying down to sleep at night.

Lulululu71 profile image
Lulululu71

Is your pulse rate high as well, or are you just feeling palpitations?

morningside4518 profile image
morningside4518

HiI have been taking Thyroxine for over 20 yrs with no problem however last year the pharmacy gave me a different brand by Teva and I had terrible palpitations. I called Dr who took me off it and prescribed a different brand tablet and within 2 days the palpitations had stopped. Try a different brand as some contain fillers that can cause palpitations

Dillongirl profile image
Dillongirl in reply to morningside4518

Wow, you're lucky to have a GP who 'enquires' is open or just knows that thyroid problems are more complicated than the text books say.

Quest64 profile image
Quest64

I was on Levothyroxine and doing ok until I went to pick up my refill and they gave me Euthyrox instead. The heart palpitations and increased heart rate made me quit. Had to go back to NP Thryoid. It could be a sensitivity. Sure didn't agree with me.

ssbook profile image
ssbook

Levo did NOT work for me. Was initially on nature throid. Dr. switched me to Synthroid towards the start of Covid. Made my muscles rigid, extreme dry mouth! I could hear my heart pounding in my left ear and could feel my heart flutter often. Dr. Switched me to Armour. No problems now.

helvella profile image
helvellaAdministratorThyroid UK in reply to ssbook

The formulation of Synthroid might suite you better, but Synthroid is just a brand name for a levothyroxine product. It is not a different active pharmaceutical ingredient.

Sunnydays11 profile image
Sunnydays11 in reply to helvella

Yes I’ve heard it has less ingredients in it .

helvella profile image
helvellaAdministratorThyroid UK in reply to Sunnydays11

I don't know that is the case.

Synthroid contains:

acacia,

confectioner's sugar (contains corn starch),

lactose monohydrate,

magnesium stearate,

povidone, and

talc

Another make, chosen randomly, Sandoz, contains:

Magnesium Stearate, NF;

Microcrystalline Cellulose, NF;

Colloidal Silicone Dioxide, NF; and

Sodium Starch Glycolate, NF

(Both also contain colorants.)

Oatcake profile image
Oatcake

You say you have had Teva and Mercury Pharma brands. These both have acacia powder as an ingredient. I found that Mercury Pharma gave me palpitations about an hour after taking it. I can only take tablets that don't have acacia as excipient.

Sunnydays11 profile image
Sunnydays11 in reply to Oatcake

Hi what do you take now then ? Thanks.

Oatcake profile image
Oatcake in reply to Sunnydays11

Hi, I always get Accord which is the name of the manufacturer and licence holder. It can be packaged as Accord, Almus for Boots or Northstar for Lloyd's chemist. That's ok if you take 50 mcg or 100 mcg. Northstar's 25 mcg tablets are from Teva.

fioradonna profile image
fioradonna

I get them too and basically my Dr has done nothing. I do better on Armour but I'm trying to get pregnant so she won't let me take the T3

jacobite33 profile image
jacobite33

Geez oh some ladies that’s quite a lot of differences and experiences with different medicationsI’m just a guy that usually gets a square jawed equivalent male doc in a tin flute (suit) that has a look in his eyes that say’s that the Chinese named two fireworks after me.Rocket and banger! Even the fine female docs said no when I asked if the change could have caused the problems

Theres another bonafide HELSvella angel giving out great advice I see as usual too.Hope your good too and staying safe!

Morningside (lovely place in Auld Reekie) my problems started with heart shivers around September 2017 sure that was about the same time I had a different supply for a while.Not been right since! (They say I was never right being left handed)

So you’s fine people are saying under medicated gives palpitations? Hmmmmm? Maybe those fireworks are named after me after all?

If i get my results before my levo was reduced would you’s kind peeps give me your verdicts.A firework to be or a firework not to be?

Hey Sunny my apologises if you think I’m gatecrashing your thread! Your more that welcome to tell me off and give me a clip around one of my large protruding lugs! (Well gently please as it stings!)

Sunnydays11 profile image
Sunnydays11 in reply to jacobite33

Hi least you’ve cheered me up lolHope your well. The nice people on here have given me some kind advice hopefully I’ll feel normal soon I live in hope ! Just so scary when the palps go on for weeks . Thanks for your reply :0)

jacobite33 profile image
jacobite33 in reply to Sunnydays11

Sunny (puts me in mind of a great song Sacred child from Paul Simon,think that’s spelt sonny though.Anyhowz) you got to laugh!

I’m getting better every day and that’s since I put a thread on here and got great advice and made a plan.Your right they are nice and kind and you will get better soon.I can’t say normal as I don’t understand what that means been told all my life I’m Abby Normal!? lol

Put the make of your meds up along with your previous results as you can get to the bottom of it with there great advice.Or learn to accept it as being non life threatening.I was told my mine never interfered with my normal sinus heart rhythms.Peace of mind? It took a while as yes it was scary and still can be

Used it to my advantage though when standing in a queue

Ssssh a wee secret here!

I call it PAYPALpitations

It mysteriously develops when it’s my turn to pay with the family and I have to go sit down

Very strange indeed but it can save me a fortune!?

robynrose67 profile image
robynrose67

Hi there, i know how daunting and scary this can be, I suffered with palpitations when starting levo and this was one of the symptoms I had that took me to getting diagnosed. I usually get them when my thyroid is off and when it's level i'm fine. Sometimes it just takes some time for your body to get used to it and get level and on the correct dose for you. Keep talking to your doc if you are not happy. Try meditation to help keep you calm, you will get sorted :) x

Sunnydays11 profile image
Sunnydays11 in reply to robynrose67

Thanks for your advice I’ll try meditation hope it works x

windysea profile image
windysea

I'm hypo and still working on balancing my meds. My first hypo symptom was palpitations, I didn't know I was hypo and went to a cardiologist who found high blood pressure, benign arrhythmia (premature atrial contractions) but no other heart-related physical problems. They left it to me to figure out it was a thyroid issue.

I found some suggestions on cardiology forums that palpitations could be calmed by magnesium, and it worked well for me. Of course it didn't solve the high BP or arrhythmia due to my being hypo but it meant I could finally sleep and get through my days. It's worth a try, as it's an essential mineral for every body, and deficiency is linked with increased risk of cardiovascular disease and metabolic disorders (including hypertension).

I tried quite a few types but magnesium glycinate gave me the most reliable relief.

jacobite33 profile image
jacobite33

Mediation?

Hey there’s an amazing thing!

Now you got mediation and deep breathing exercises then throw in a bit of singing or humming change of diet exercise and a few other health changes will stimulate your vagus nerve

That in itself they say will help with anxiety depression and boost your immune system

It also connects your brain and stomach directly and if your diet vits minerals are all good it will help your mood as the majority of dopamine and serotonin receptors are in your stomach they say

The ancients knew!

I first heard of vagus nerve last year and thought it was to do with gambling ooooops DUH!

Dillongirl profile image
Dillongirl

Hi, you've received good information and advice from Slow Dragon who has been so helpful to me too. I joined last Autumn and found it to be a tremendous relief that the symptoms I was experiencing were not imagined and many others had similar ones. I just wanted to add my perspective.

I've had palpitations on and off over a few years, when checked out in hospital everything was 'normal' - they became constant during November 2020 and they were debilitating. I really sympathise. Then by chance my prescription last December was 100mg Mercury Pharma - this ran parallel with reading the information about TEVA on this forum. I'd been taking 75mg TEVA throughout 2020 (may be a bit before)

Nothing much changed, although the palpitations became less frequent so I requested Mercury Pharma on my repeat prescription (that's another story) I had a particularly destressing episode on 2nd January (heartbeat spike - I have a pacemaker) THEN the week after I woke up and felt so well. I have not had one palpitation since then. It probably took a few weeks to get the mannitol out of my system. It is so liberating after all these years.

To me it is too much of a coincidence. If I don't get anymore palpitations for the rest of this year then it will confirm that TEVA does not suit me. . . and its been the cause.

My GP has agreed to ask for Mercury Pharma in future - there is another story around that but I'm adamant not to take TEVA anymore.

So my advice to you is to keep on enquiring, get the health checks as it won't do any harm BUT ask for a different levothyroxine. Also, follow the advice on this Forum about when to take it etc. I think that has contributed to my wellbeing also.

You know your own body and know when something is wrong - Doctors should be there to help you enquire and find out what it is. - not tell you that it something else.

Good luck

jacobite33 profile image
jacobite33 in reply to Dillongirl

Dillon hope you good girl!

Starting to think that different brands have been my problem now but they keep telling me no

I had a different brand back around 2017 it came in a brown foil and can’t find out what brand it was

Have even went to my chemist and asked if I could trace the prescriptions back they said no as I had couple of different chemists (two or three at most) from my original chemist with working around Scotland

Since June it has been Teva 50mcg and 25mcg

Before that is was 100 mcg Accord and 25 Teva and I just got another repeat with 25mcg Teva and 50mcg accord

It’s very confusing at times (but I’m easily bamboozled) but I am now getting a clearer picture in my head and it’s not football and juicy burgers! This is fantastic!

Take care!

Dillongirl profile image
Dillongirl in reply to jacobite33

There is definitely something in it. I really haven't had any palpitations since start of January. They decreased during December - and since January I haven't had one. I assume that it took some time for the mannitol to work out of my system. For me it is not a coincidence. I shall stick to the new brand during this year and if I still don't have palpitations then it must have been TEVA that didn't suit me.Good luck

jacobite33 profile image
jacobite33 in reply to Dillongirl

Thanks Dillongirl!

Im finding my palpitations eased on MA Holder Teva Uk Ltd and my symptoms seem to be with Accord

The more I find out the more confusing it becomes for me ooops!

Stay safe!

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