Levo related heart palpitations?: Hi I'd be... - Thyroid UK

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Levo related heart palpitations?

tge1230 profile image
57 Replies

Hi

I'd be interested to know if anyone can relate to my Levo experience so far.

In November 2024 I was diagnosed with hypothyroidism following a blood test taken as a result of my experiencing extreme itching in the evenings on a regular basis. It drove me nuts.

Blood tests showed raised TSH, low T4 so I started on 50mg Levothyroxine. I didn't take any notice of the brand as I saw no reason to (in my naivety). Having Googled images for Levo I think I had been taking Almus. A week or two into starting them I experienced extreme fatigue and muscle aches/weakness which quickly resolved and I felt really good - much less tired after work and generally feeling stronger and more energetic (and the itching stopped!).

I did a privately purchased blood test after 2 months and saw my TSH had come down but was still somewhat high, and T4 was optimal.

After 2 months on the original brand, my repeat prescription was a different brand - Teva. Although still 50mg I noticed the tablets were larger but didn't think much of it. However, shortly after starting this brand I experienced a thumping heart. I was experiencing the physical symptoms of anxiety although I was not actually anxious. I ignored it as they came and went until one day my heart was thumping all day and it became actually quite exhausting. I started halving the tablets and the heart palpitations stopped, although I am now feeling less energetic again.

I would be interested to hear any insights that anyone may have to share.

Thank you.

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Obsdian profile image
Obsdian

Is your GP not following up with blood tests? Also if one brand suits you, you can ask your GP tp include that brand name in the first line of the prescription.

tge1230 profile image
tge1230 in reply toObsdian

Hi Obsidian, yes, I was scheduled for a blood test 3 months after commencing medication but I did my own one privately (a) because I was curious to see what was happening and (b) I wanted testing for antibodies to see if I had Hashi's (which I do) and the NHS test didn't test for that. I have subsequently seen my GP and he has confirmed that if I find out what my initial brand was he will state it on my future prescriptions; interestingly he said most people prefer Teva.

The main point of my post, however, was to see how certain brands have affected other people, and in particular to learn more about the causes of heart palpitations. From what I have seen so far it appears that under medicating can be the cause, although mine stopped when I started taking half a tablet (ie, 25mg) instead.

FancyPants54 profile image
FancyPants54 in reply totge1230

I raised a yellow card against Tiva Levo because it gave me serious nosebleeds. I won’t touch it. I stick to Mercury or Wockhart. Different brands most certainly are not interchangeable.

Buddy195 profile image
Buddy195Administrator

Welcome to the forum tge1230

So we can offer better advice, can you share blood test results (with ranges in brackets) for:

TSH

FT3

FT4

Plus any antibody and key vitamin tests (ferritin, folate, vitamins D and B12)

If your GP is unable to complete all the above (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health:

thyroiduk.org/help-and-supp...

Regarding heart palpitations, I ended up in A and E with these (plus high anxiety/ tremor/ fast pulse) when my thyroid medication was not optimal. I’ve had similar symptoms when I’ve tried to increase or decrease thyroid medication too quickly. I now adjust super slowly, adding (or reducing by) 12.5mcg (alternate days at first), then daily, until well tolerated.

tge1230 profile image
tge1230 in reply toBuddy195

Hi, and thanks! OK - full disclosure!

5.11.24 (pre-diagnosis and medication):

TSH 8.47 mlU/L (0.27-4.2)

FT4 10.1 pmol/L (12-22)

B12 410 ng/L (>178)

Ferritin 47 ug/L (13-150)

Folate 4.5 ug/L (>2.9)

8.11.24 - Commenced 50mg Levothyroxine (not sure which brand but had gold packet). Initially felt awful then really good.

8.1.24 - Private blood test (Thriva) results (I had only been taking the first brand at this point):

TSH 4.47

FT4 15.7

FT3 3.4 pmol/L (3.1-6.8)

T4 104 nmol/L (59-154)

TPOA 240 klU/L (0-34)

TgAB 92.6 kU/L (0-115)

17.1.25 - GP blood test (been 9 days on 50mg of different brand (Teva) at this point:

TSH 5.73

FT4 14.4

So it seems on the new brand, even at the same dose of 50mg, the numbers were looking less rosy. Also, by this time the heart thumping was becoming an issue. After an A&E visit (as instructed by 111) I reduced the dose to 25mg to try to relieve the palpitations. Had a GP appointment and he condoned my halving the dose, and said if I can determine what the original brand was he will try to ensure I get that one.

Other info, 56 year old female, 5'4", 54kg, run 3 times a week (not mega distance currently due to a pesky achilles injury) and resistance train twice a week. I have a physical job working with horses. My BP is good and Vo2max is 43. I rarely drink alcohol, avoid UPF, don't smoke. Despite this I have high cholesterol but that's another issue! I supplement with Vit D3/K2, turmeric, creatine and collagen, these latter 3 only since the new year.

Buddy195 profile image
Buddy195Administrator in reply totge1230

As TSH should always be under 2 (and many forum members saying they feel best when this is closer to/ under 1) you definitely could do with an increase. As, like me, you have experienced palpitations etc, I would ‘think tortoise not hare’ and add additional Levo super slowly.

tge1230 profile image
tge1230 in reply toBuddy195

Thank you. My next prescription will be 25mg tablets so will afford more flexibility. Is it reasonable to expect the palpitations to subside in due course then? They are alarming as even when running 20 mile cross country races my heart doesn't thump that hard; faster yes, but not thumping out of my chest as on the Levo! It's also confusing as under medicating seems to be a common cause of heart palpitations, but in that case I can't help but wonder why I didn't have heart palpitations when I was on no meds at all, ie pre diagnosis?

Buddy195 profile image
Buddy195Administrator in reply totge1230

I also experienced palpitations when started a small dose of Levo (not before)- Others here have reported similar until thyroid medication is slowly increased.

As a former x country runner, I would definitely cut back on the miles until your adverse symptoms fully pass and your thyroid medication is more optimal. I initially found that trying to continue with my exercise regime made the adverse symptoms worse (ie my pulse was higher) BUT I was able to return to former exercise routine once medication was optimal. I’ve now switched to spinning though- as it’s better for my knees! 🤣

greygoose may be able to offer further advice/ reassurance re cholesterol and hypothyroidism

tge1230 profile image
tge1230 in reply toBuddy195

Thanks so much for your input it's much appreciated.

Buddy195 profile image
Buddy195Administrator in reply totge1230

As SlowDragon advice, try some gentle exercise options. When I was initially diagnosed / whilst adjusting medication I took up pilates and meditation- both of which I have continued with (as I’ve found them beneficial to my physical & mental health)

SlowDragon profile image
SlowDragonAdministrator in reply totge1230

run 3 times a week (not mega distance currently due to a pesky achilles injury) and resistance train twice a week. I have a physical job working with horses.

You are going to need to reduce training and strong physical activity while you get use to and increase your dose

You need to SLOWLY build up your Ft4 and Ft3 levels

Exercise can rapidly diminish Ft3

Gentle walking or yoga at the moment are more appropriate

Despite this I have high cholesterol but that's another issue!

High cholesterol is side effect of being hypo and will reduce as dose levo increases

nhs.uk/conditions/statins/c...

If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.

tge1230 profile image
tge1230 in reply toSlowDragon

High cholesterol is side effect of being hypo and will reduce as dose levo increases

Bizarrely, after my 2 month (private) blood test which showed my TSH reduced by half and T4 up to optimal levels, my total cholesterol went up from 8.0 to 9.4, and the latter was a fasting blood test too! It's a minefield.

Thanks very much for your input.

FancyPants54 profile image
FancyPants54 in reply totge1230

I don’t know why you think your T4 was optimal. It was nowhere near optimal and your T3 was dire. All that exercise and hard work on a sick thyroid is a recipe for serious adrenal issues. Do please take notice of what others have said. No running. No gym. Gentle exercise and work will be more than enough. You have a long way to go before you reach optimal so pace yourself.

FallingInReverse profile image
FallingInReverse in reply toFancyPants54

tge1230 3x marathon runner here, literally countless half’s, 10ks, and for a time I did a “5k a day” in slow training months.

I emphasize advice given to respect your new diagnosis and lean towards taking it easier.

All those runs and such before diagnosis , your thyroid (the body’s engine) was giving up a bit. You just didn’t really know it. Because during that time, your adrenals (your turbo boosters) like cortisol and adrenaline, we’re compensating.

Looks like you caught it early… before a big crash… but extreme incessant itching was the manifestation of a very imbalanced and dysfunctional system. It reflected intolerance or inflammation or low immunity deep down that was manifesting as that itch.

But that wasn’t the only thing your body was experiencing, just the one thing you were aware of. Your low thyroid hormones were depriving hundreds of of cellular processes from the energy and cofactors they needed.

By the time you got diagnosed - you have a hole to dig out of , and taking Levo will do that but now your whole body is in a chain reaction as you adjust to more sufficient levels of thyroid hormones.

There are a million ups and downs in the months and years while things get back to working.

Over time, with hypo, we get very in tune with the ways autoimmune rolls through our bodies.

tge1230 profile image
tge1230 in reply toFallingInReverse

Thank you, I'm learning a lot here. I am on a skeleton running regime at 3 x per week; normally at this time of year I would be running 5 x per week with much higher mileage and duration, so perhaps the achilles issue is a blessing in disguise! I'm tempted to put myself back up to 50mg Levo again, now that I know from you guys that heart palpitations are part of the process and not just something I will have to put up with forever. I realise we are all unique individuals and that "normal" is something of a myth, but I'd still be interested to know if anyone out there found that they experienced heart palpitations with one brand but not another.

FallingInReverse profile image
FallingInReverse in reply totge1230

I do recommend you use the search function here, filtering on this thyroid board, using key words like palpitations or the various brands.

Also - as you know none of us here are doctors and no one truly knows anything about you from just a few posts.

But yeah - 50 is the starter dose, 25 will likely just suppress your tsh while not delivering anything close to enough.

There is lots of consensus here that low (increasing by 12.5 a day at most) and slow (waiting at least 6-8 weeks on a consistent dose) is the way to go.

I don’t think anyone here would disagree that back up to 50 is a good choice, and that in 6 weeks you will likely benefit from another increase to 75 (possibly waiting at 62.5 for a week or so first.)

No one of us is the same but manufacturer s guidance does say general dosing is 1.6 mcgs per kilo of body weight.

If interested - here’s a post I wrote last year about palpitations: healthunlocked.com/thyroidu...

Keep in mind, I was put on too much t3, too early, all at once and had to dig out of that.

But in that post you can get a sense of the different palpitations and heart topics that come up sometimes.

Obsdian profile image
Obsdian in reply totge1230

Injuries, muscle cramps and muscle pains were a symptom for me.

tge1230 profile image
tge1230 in reply toFancyPants54

Both Thriva and NHS state 12-22 as the desirable FT4 range and Thriva said my FT4 was 15.7 which was optimal. FT3 range 3.1-6.8 and mine was 3.4 which was considered normal. Are they incorrect and if so where do you find correct info?

FancyPants54 profile image
FancyPants54 in reply totge1230

Those ranges, as someone else has written here, don't mean much to an actual patient at all. We all need what we need. And what I need may be much more or much less than you. I might need my FT4 to be 90% of the range to feel well. Or I might need it to be 60% to feel well. It depends how well I convert FT4 into T3 the active hormone. So a doctor will look at a seriously ill patient who can hardly move and declare them well because the numbers are in range or even in the middle of the range. But if that person's sweet spot is 2 points from the top of the range, they are still a long way from well.

Those generic drug leaflets are hopeless, as are the reference ranges. Our bodies tell us what's right and what's not right.

SlowDragon profile image
SlowDragonAdministrator in reply totge1230

Well you’re nowhere near optimal levels of Ft4 and Ft3 yet so hardly surprising cholesterol is higher

Levothyroxine doesn’t “top up” your own thyroid output…..it replaces it

So when on low starting dose it’s common to actually be more hypo and increasing hypo symptoms

tge1230 profile image
tge1230 in reply toSlowDragon

Both Thriva and NHS state 12-22 as the desirable FT4 range and Thriva said my FT4 was 15.7 which was optimal. FT3 range 3.1-6.8 and mine was 3.4 which was considered normal. Are they incorrect and if so where do you find correct info?

FallingInReverse profile image
FallingInReverse in reply totge1230

If you surveyed the population and determined a range of “normal “ women’s shoe sizes, you would get a range of about 5 to 11 for women.

But if you were a size 10 and the doctor said - well, here’s a size 5.5 for you… no reason it should hurt, normal starts at 5 and you’re now “in range”!

That’s kind of how ranges work.

Normal is defined as the lowest and highest results among about 95% of the population (they lob off the long tails at the very top and very bottom) AND excluding anyone who has a thyroid disorder.

So at the core of the big bait and switch is making a normal distribution (a statistical calculation - not an assessment of symptoms) of euthyroid population numbers and conflate that with the levels us hypo folks “should” have no symptoms at.

SlowDragon profile image
SlowDragonAdministrator in reply totge1230

Free T4 (fT4) 15 pmol/L (12 - 22) 

Your Ft4 currently only 30.0% through range

Free T3 (fT3) 3.4 pmol/L (3.1 - 6.8)

Ft3 worse at only 8.1% through range

Many, many (most?) on Levo will need Ft4 (Levo) at least 60-70% through range

Ideally Ft3 not far below that

Guidelines on eventual dose levothyroxine is likely to be approx 1.6mcg Levo per kilo of your weight per day

So unless extremely petite, vast majority are on at least 100mcg per day

SlowDragon profile image
SlowDragonAdministrator in reply totge1230

Guidelines of dose Levo by weight

approx how much do you weigh in kilo

Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)

cks.nice.org.uk/topics/hypo...

bnf.nice.org.uk/drugs/levot...

nhs.uk/medicines/levothyrox...

Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.

Some people need a bit less than guidelines, some a bit more

TSH should always be below 2 on levothyroxine

gponline.com/endocrinology-...

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

onlinelibrary.wiley.com/doi...

If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).

sciencedirect.com/science/a...

The optimal daily dose in overt hypothyroidism is 1·5–1·8 μg per kg of bodyweight, rounded to the nearest 25 μg.

Kisca profile image
Kisca in reply toSlowDragon

Hello SlowDragon ,

Does Armour replace or top up your own thyroid like Levo does ?

Thank you 🙏

SlowDragon profile image
SlowDragonAdministrator in reply toKisca

All replacement thyroid hormones do this

Anything with T3 in it shuts your own thyroid down faster

Kisca profile image
Kisca in reply toSlowDragon

Thank you ☺️

waveylines profile image
waveylines in reply totge1230

Uve not been on levothyroxine for long do unlikely to have turned your cholesterol around. It will take several months at least for you to find the optimal dose eith gradually increases and for your body to recover. Always the snail that wins the race in hypothyroidism I'm afraid.

Consider this. With Hypothyroidism the whole body slows down...... various variable parts don't work as well due to lack of thyroid hormone.....however if a sudden rush of the thyroid hormones hits your body it can't just up speed and resume as normal.. it has to gradually wake up and resume normal speed. So you feel better than as your body is ready for a bit more you feel rubbish agsin until the next increase .... until your optimal and generally feel well. This is called Tiltration.

However on top you have autoimmune and this can cause bouts of thyroid hormones being suddenly released as the thyroid gland is attacked.

This could be the reason for feeling that sudden change.

Keeping to the same brand rules one element out ie diff responses to different brands the second is more tricky. If it's a surge then you either reduce temporarily like you did or some people stop for few days to let things settle then restart. It's not easy.

I agree eith others I'd knock of the hard exercise programme- give your body time to heal and recover.

FallingInReverse profile image
FallingInReverse

From what I have seen so far it appears that under medicating can be the cause, although mine stopped when I started taking half a tablet (ie, 25mg) instead.

I’ve had similar symptoms when I’ve tried to increase or decrease thyroid medication too quickly. I now adjust super slowly, adding (or reducing by) 12.5mcg (alternate days at first), then daily, until well tolerated.

Palps are very common when under-replaced and especially when changing a dose.

Happened to me and many of us.

There are of course intolerance to various fillers in different tablet brands.

But also - Levo has a 7 day half life. If you took one pill now . In 7 days you would have 50% of that dose in your blood. So when you take your daily pills it builds on itself over time until in 6-8 weeks you have a stable level of hormone in your blood.

That’s why we wait 6-8 weeks to test, the more weeks the more stable.

And in those 6-8 weeks your whole body (including your heart) is adjusting to having waht will eventually be a full replacement level that s optimal for you.

Only you know yourself, and you def should get the core blood tests that Buddy listed out as a dashboard that you monitor every 8 weeks as you titrate.

But we all caution - that period and especially the first 3-5 weeks can be very up and down. Usually the answer is to hold the line.

Just sharing my experience, and noting yes, it’s very common in the early days of diagnosis and treatment.

If you share more info, we can share our relevant experience, and over time you’ll begin to have a better sense of what’s more usual, and what is cause for concern. Only you will know ultimately. But yes, it’s common when titrating and changing doses even when the dose your on will ultimately settle to where you need to stay.

It can take 1-2 years to get to a full replacement dose. That doesn’t mean it will take 2 years to calm down and feel functional. But hormones take time to ramp up, it’s a long, low & slow journey.

edit- and I see you brand brand new to the forum! Welcome! I actually found this board for the same reason a couple years ago. I thought I was going to have a heart attack with the palpitations I was feeling! As I always say - just because we are hypo doesn’t mean we don’t have other things wrong with us (like heart problems)… so stay vigilant and learn everything you need to to advocate for yourself. But for me and quite a few others, for some it is just what happens and it resolves as we get to full replacement dose.

tge1230 profile image
tge1230 in reply toFallingInReverse

It's becoming clear that palpitations are a very common part of the early process and that's reassuring. I'm happy to be amongst others who like to have some advocacy over their own health. Thank you very much.

tattybogle profile image
tattybogle in reply totge1230

hi tge , welcome...

healthunlocked.com/thyroidu.... list-of-references-recommending-gps-keep-tsh-lower-in-range-

healthunlocked.com/thyroidu... explanation-of-what-*high-tsh-is-telling-us-when-our-ft4-level-is-normal-on-levothyroxine-the-shoe-size-analogy.-(*over-2.5-3-ish)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

A Helpful Quote from another members GP ,on what to expect when starting treatment for hypothyroidism.

"The way my new GP described it was ..."You know how your body is continually breaking down and rebuilding itself? Well, the thyroid controls the rebuilding, so if it isn't working you carry on breaking down but don't rebuild properly. Your body now has a lot of catching up to do, which will take a minimum of 12 months, probably a lot longer...." or words to that effect. He also said it would be a saw tooth recovery (get better, go backwards a bit, get better, go backwards a bit) and he's been right so far."

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

SlowDragon profile image
SlowDragonAdministrator

Testing should be 6-8 weeks after starting or any dose change in levothyroxine

50mcg is only the standard STARTER dose

You are likely ready for next increase in dose levothyroxine

Levothyroxine doesn’t “top up” your own output….it replaces it

It’s important to get dose increases upward

Palpitations are often when not on high enough dose levothyroxine

What were vitamin D, folate, ferritin and B12 results on private test

What vitamin supplements are you taking

Has GP done coeliac blood test, if not get that done at next test

tge1230 profile image
tge1230 in reply toSlowDragon

I didn't get vit D, folate, B12 or ferritin done on the private one as those (excluding Vit D which wasn't tested but I supplement with that) were all ok in the NHS one so I saw no cause for concern. I have spoken to my surgery and pharmacy today and discovered the first brand, which I could tolerate 50mcg of, was Almus. I have asked for this brand in 50mcg for my next prescription. I have also requested a coeliac test as you recommended. Many thanks.

SlowDragon profile image
SlowDragonAdministrator in reply totge1230

How much vitamin D are you taking

Test twice yearly when supplementing

Can test via NHS private testing service

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7.

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

NHS Guidelines on dose vitamin D required

panmerseyapc.nhs.uk/media/2...

tge1230 profile image
tge1230 in reply toSlowDragon

Sorry for delayed response - there's a lot to learn and process. I'm taking Vit D at 5700 IU per day. These ones: british-supplements.net/pro...

I did a private (Selph) coeliac test which was negative, although I eat very little gluten anyway so could be inconclusive.

When I next get a private blood test done, probably at the end of March when I will have been back on a steady 50mcg dose of my original brand, Almus, I will get Vit D tested, along with the B vitamins everyone recommends. I eat minimal red meat because I understand that it's hard on the gut and high in saturated fat, however when I search for ways to boost ferritin levels, the internet tells me to eat red meat. Do you, or anyone on here, have any suggestions for ways to increase ferritin levels please? Thanks again.

SlowDragon profile image
SlowDragonAdministrator in reply totge1230

you need to test vitamin D twice a year

test via NHS private testing service

vitamindtest.org.uk

If taking vitamin D pills or gels these need to be at least 4 hours away from taking Levo and take vitamin D with high fat meal ……so usually dinner

Low iron/ferritin

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.

It’s possible to have low ferritin but high iron

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

If taking any iron supplements stop 3-5 days before testing

Medichecks iron panel test

medichecks.com/products/iro...

Increase iron and ferritin by eating red meat and eating liver once a week, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Shellfish and Mussels are excellent source of iron

healthline.com/nutrition/he...

List of iron rich foods

dailyiron.net

ThyroidFrazzled profile image
ThyroidFrazzled

Hello

You’ve already received so many useful replies - I just wanted to add that I developed irregular heart beats when my brand of Levo was switched (dose remained the same) . These lasted for months and I eventually had a full cardiology work up, which found no cause for them. The cardiologist was puzzled.

The pharmacy switched me back to my original brand a few months later and the irregular heartbeats stopped immediately.

I’ve heard similar stories elsewhere when brands are switched.

(I was switched from Glaxo Wellcome to Mercury and back.)

tge1230 profile image
tge1230 in reply toThyroidFrazzled

That is very useful to know, thank you and I am glad your unpleasant and alarming heart issues have abated.

rosco1 profile image
rosco1

Hi tge1230,

I to am taking Levothyroxine ( sorry unsure what brand I get as it is a blister pack ), but contacted my Gp and was told I was having palpitations.

Was referred to the hospital to have a heart monitor fitted for 24hrs, results showed nothing, but I still get the feeling .

tge1230 profile image
tge1230 in reply torosco1

Hi, have you been on Levo for long? Aside from the palps have you had any other effects, good or bad? Thanks.

rosco1 profile image
rosco1 in reply totge1230

Hi,

Yes, have been taking Levo for 35yrs. Have no energy and suddenly i am sleeping 16hrs a day.

Been for blood tests and my results came back normal, only thing was my Gp said my sleeping could be related to my grief.

I'm still at a loss as to what's causing these new symptoms.

tge1230 profile image
tge1230 in reply torosco1

I'm sorry to hear that, I have nothing helpful to contribute but I slept A LOT when I lost my mum. Unless I was moving, I was asleep! I hope you get to the bottom of it and feel better.

rosco1 profile image
rosco1 in reply totge1230

Thank You for your kind words. My mother death has been a shock to me to as it was sudden.

I'm the same, as soon as I sit down I'm fallen asleep. Hope you feel better soon to

MyOrangeDog profile image
MyOrangeDog

I totally understand your issues, I have experienced them myself and actually ended up in A&E because my heart was thumping and irregular.

Firstly the Teva brand doesn’t suit everyone. I think there are fillers in it which some people are sensitive to. On my prescription the GP always puts not Teva Brand.

It is always advised to try and get the same brand too. I will sometimes have to phone around pharmacies to see if they have the brand I’m best on ( Wockhardt) . To complicate matters there’s a new kid on the block called Hillcrest on the box but have Teva tablets inside ( I think it’s the 25mg ones).

The physical anxiety symptoms you felt when not actually anxious is exactly how I felt too! It was confusing and worrying and then I really did feel anxious!

I think I am particularly sensitive to Levothyroxine. I can’t take much of it at a time .

I had been taking 25mg a day and they said I needed to up my dose to 50 with an aim to get to 75mg. I had already split my 25mg dose into two, AM and PM.

When I upped to 50mg (25mg AM and 25mg PM) it was terrible and that’s when I ended up in A&E. My heart was producing extra beats all the time and I thought I’d collapse. I felt awful.

The medics had no idea why and I was sent home but said it couldn’t be my Levo. I was pretty certain it was.

In the end my GP just said ‘you know your body, take what you think you feel best on’

I’m not sure what I thought about that but I now split my Levo into 3 and can tolerate 50mg now. I think the 75mg is a long way off atm.

It’s taken a long time, months and months . People often say on here it’s best to take any increase very slowly if you think you’re not coping well with it.

I bought a pill cutter and am quite an expert at cutting a tablet into four. 😂

Because Levo has to have time away from food and supplements it can be a bit of a faff taking it 3 times a day but it is the only thing that worked for me; it really got me down before.

I bought a really pretty pill box with the cut up tablets in and pop it in my bag before I leave for work. Once you’re in a routine it’s fine.

Good luck x

tge1230 profile image
tge1230 in reply toMyOrangeDog

Well done on sorting it out for yourself! I would like to get back to 50mg if I can get the original brand; the pharmacy should know what it was. Thanks for your input.

MyOrangeDog profile image
MyOrangeDog in reply totge1230

You’re very welcome. I guess it’s reassuring that so many others have had a similar experience. Knowing that helped me. Just remember, try not to rush it or it can come back and bite you 😂x

csj113 profile image
csj113

hi, also a former endurance athlete here (cycling). I had palpitations caused by low Ferritin (you probs know it’s common in female athletes). Your Ferritin is a bit on the low side so I’d also look to supplement that.

tge1230 profile image
tge1230 in reply tocsj113

Sorry for delayed reply, lots to process! Do you have any recommendations on how to boost Ferritin, other than eating red meat please? Thanks again.

csj113 profile image
csj113 in reply totge1230

You can buy ferrous fumarate 210mg tablets over the counter in a pharmacy. This is iron and when your haemoglobin is normal the next thing to be replenished is your ferritin (iron store). Btw if you haven’t had your haemoglobin checked I’d get that done as anaemia can also cause palpitations. Low ferritin with normal haemoglobin is known as iron deficiency without anaemia (IDWA).

If you take one every other day (away from tea and coffee, some say with vitC or orange juice but actually the jury’s out on that one in terms of whether it helps absorbtion) your ferritin should come up slowly. You can take higher doses but the side effects can then be unpleasant and it’s not always much more effective.

SlowDragon profile image
SlowDragonAdministrator in reply tocsj113

csj113

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.

It’s possible to have low ferritin but high iron

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

If taking any iron supplements stop 5-7 days before testing

Medichecks iron panel test

medichecks.com/products/iro...

monitormyhealth.org.uk/anae...

tge1230 profile image
tge1230 in reply toSlowDragon

These were FBC results from November 2025 which the GP accepted as no action needed. Do they suggest low iron? Thank you very much for all your insights.

.
tge1230 profile image
tge1230 in reply totge1230

Ferritin was 47 ug/L (range 13 - 150). This was before HT diagnosis and starting Levo.

SlowDragon profile image
SlowDragonAdministrator in reply totge1230

Below range RBC …..indicates low iron or B vitamins

nhs.uk/conditions/red-blood....

and low haemoglobin - suggests low iron

verywellhealth.com/low-hemo...

csj113 profile image
csj113 in reply toSlowDragon

Absolutely 100% agree you need to be checked for anaemia too with palpitations.

I had v low ferritin (7) with top of range haemoglobin and my consultant assured me that an infusion was safe (tablets too just much slower) and that my ferritin would be topped up and my haemoglobin unaffected- that’s how it works apparently (he did explain at the time, in detail). And that’s exactly what happened (in fact, my haemoglobin dropped v slightly post infusion). He also advised the every other day tablet regime if my ferritin dropped again.

About to get an infusion for my young daughter - haemoglobin at top of range but ferritin 17. We reckon it’s possibly a genetic thing!

tge1230 profile image
tge1230 in reply tocsj113

Thank you very much, I need to learn how to interpret blood test results!

Catlover1981 profile image
Catlover1981

No palpitations felt but I was playing a dangerous game with my life. I decided I didn't need all my medication so I took myself off everything in March 2024 and I then got a phone call 2 months later asking why I haven't been ordering my medication so fast forward to August and I started taking medication again and I ended up in hospital with an extremely fast heart rate of 160bpm. It turns out going from 0 to 150 mcg made my poor heart go fast.

I have learnt my lesson and I will never EVER take myself off medication again especially as things only get added. I am now on 2 extra medication now. If I had gone to my GP and said I don't think Ramipril and Amlodipine are suiting me i wouldn't have had to be rushed into Resus.

Joiesmom profile image
Joiesmom

I've been on thyroid medication for 31 years. Armour, T3&T4 combo, and levothyroxine. One side effect of too much medication is rapid heartbeat. I've had palpitations since childhood with Mitral Valve Prolapse but they became increasingly more frequent and longer in duration after starting medication. Eventually I was put on a beta-blocker to control my heart rhythm. I might add that when I first started medication (age38), I had symptoms similar to heart attack which sent me to the ER.

Fatigue is altogether a different subject. I have autoimmune thyroid disease. My energy and fatigue have been the same. Not sure if my symptoms are due the disease or medication. Is just is what it is. I've learned to live with it.

It took several months to get the medication dose dialed in and it has changed over the years as the disease progressed. I'm now taking 125 mg of levothyroxine. Just keep your doctor well informed of your symptoms.

This is my experience. Everyone is different. Best of luck .

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