Please could you read this, I would appreciate it very much! I'll try to explain things as quickly as possible. After coming home very ill from travelling south east Asia 3 years ago, I had every scan, test you could possibly have and nothing showed up. The only thing was a slightly raised TSH (on NHS levels) and Hashimoto's. So after fighting the Dr and specialist for the best part of 12 months I finally received a trial of levothyroxine and then found myself settling on 75mg a day. This medication severely improved my day to day life and symptoms but wasn't really the answer and has still left me with a below par day to day quality of life.
Where as now the muscle pain, aches in joints, stomach issues, dizziness/floatiness are less, I still have particularly one symptom which is really impactful and that is the pounding of my hearbeat. This is intensified hugely when I am active or in exercise as it makes me feel so uncomfortable, I get lightheaded, headaches, tremors and it just feels like my whole body is pounding.
I have seen gastro and had multiple colonoscopy/parasite screens/endoscopy etc so we can rule that out. As well as that I've seen multiple cardiologists which have ruled out any heart defects. They actually found a hole in my heart which I'd had from birth but it is quite a common thing, I had it closed just incase there was any possibility of it being the problem but even after the operation my problems still remain and the cardiologists ensure me that it isn't heart related.
There was a time that a neurophysiologist believed I had a rare muscle disorder called Pompe Disease. This was after I had multiple tests related to my muscles and a biopsy of the thigh. After further bloods the Dr ruled out that disease but has found some evidence of myopathy but nothing diagnosable.
So I'm not at a place where I'm not really seeking the answer but I want to try and improve my days and that'll only be achieved if I reduce the worst symptom for me and that is the pounding heartbeat. My pulse/heart rate is fine and blood pressure also.
My thoughts are asking the Dr for a Exercise tolerance (stress) test as it seems impossible for me to think that they wouldn't see how struggling I am considering how I know I feel when I'm going through it..
Secondly, should I be asking about some T3 treatment alongside the levothyroxine? I know it's not prescribed on the NHS commonly but is there any possibility? If not prescribed I could maybe attempt to source some online and inform my GP so he will monitor me whilst I'm trying it?
And finally, should I be asking about a blocker of some sort to help the heart problems? It's such a strange one as this symptom is commonly associated with hyperthyroidism yet I'm hypo/subclinical hypo with hashimoto's and it is so prevalent for me. I had this symptom prior to levothyroxine by the way so I know it's not the extra T4 that is solely responsible.
Thank you for reading!
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Curtis90
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I would say definitely ask for the stress test. To be honest after that, it sounds like you had more than enough heart investigations if you've seen multiple cardiologists.Perhaps a low dose beta blocker could take the edge off the thumping provided you don't have a particularly low resting heart rate.
I wouldn't take a high dose if don't need to as can make you feel worse.
Are you sure anxiety is not a factor?
Only as if your conscious of your heart all the time, it can seem more prominent. You may know this if symptoms are less or go when your doing things or distracted etc.
I take thyroxine but not T3. My dad took it for years then stopped it and actually feels better now. Who knows with the thyroid it seems like a minefield.
I have had periods of time when I've had bad palpitations but they have settled. They can be caused by the nature of hashimotos whereby damage is done, it releases the hormones (you feel hyper symptoms) then you have more underactive symptoms.
But my endocrinologist didn't explain this to me it was someone on here.
I am in same boat where my quality of life isn't great. But I'm just trying to do what I can until I see cardiologist next week.
Are you normally an active person? Have you been more inactive?
I think my resting heart rate is quite low unfortunately which could be a sticking point for sure..
Yeah I mean most people will say it but I don't believe anxiety is a problem. I'm too far into this to be worrying about it now, plus even my partner has noticed when I've been sleeping or just lounging around how crazy my heartbeat can pound throughout my body etc.. I've also volunteered through the years to try anxiety treatment in the hope it was anxiety.
Yeah I think the hashimoto's spitting out hyper/hypo symptoms is probably what is happening. I've done so much to try and improve that though, gluten free/vegan for 2 years now as well as the levo treatment.
3 years ago yeah I was super active, I still try to be as active as I can be now. Exercise daily to some degree and go on a 20-30km bike ride once a week. It sounds from this that I'm in pretty good shape but it's hard work and doesn't leave me feeling good at all, but seen as I know I don't have heart problems as such I'm not afraid of exercising if that makes sense?
I just need to stay on top of trying to improve my symptoms but it's hard to know where to go with it..
It doesn't sound like anxiety as such then. Have you had a longer heart monitor like for 48hrs plus?Also when you say it's pounding, how many BPM is it? Like does it randomly just go up on its own?
If so surely it could be attributed to something like inappropriate sinus tachycardia, you wouldn't expect the thyroid to cause problems like this for years of being on treatment I don't think.
And if you other symptoms seem to relate to when your hearts pounding, you know it's something heart related.
I think you could try a low dose beta blocker even with a low HR , but much lower than the standard dose.
No nothing over 24 hours I believe, and I wouldn't necessarily complain about the speed of my heart, its more the strength and pounding of it. Then when I exercise and naturally my heart rate increases the pounding is even more impactful.
A nuclear medicine doctor I consulted re RAI, I asked him if my palpitations would stop if I had RAI for my Graves thyroid. He said possibly if the palpitations were due to a high heart rate.
However, he added that going hypo and if the heart rate was low, that could also cause palpitations.
What's the status of your Hashimoto's? Has it run its course? Is it well managed?
I haven't had an antibodies test for as long as I can remember but I've done everything over the years in regards to diet to try and control it. Tomorrow I'll request for my antibodies to be screened too just to see if the number has come down substantially or not.
Yeah it's such a weird one because I'm fit enough to go out and run a 5K in 24 minutes but the feeling and discomfort it would give me afterwards and for the days following is unbelievable
Yes, it's worth checking the Hashimoto's status. If the thyroid is destructing rapidly, your thyroid might not be producing enough thyroid hormones as u go hypo, and that could cause a slow heart rate.
I've always had a slow resting heart rate but yeah definitely worth checking. Likewise if I have managed to reduce the antibodies I might be having too much medication rather than not enough?
Yeah I used to run 4-5 times a week, I don't run at all now. Miss it so much... I find swimming and cycling is easier to recover from on the body.
Are Hashimoto's antibodies used to titrate medication, and not thyroid hormone levels?
Sounds like u do quite a lot of running. That probably accounts for your slow resting heart rate. It could be that with the changing Hashimoto's status, ie that it's moving towards hypo, it's affecting your heart rate and slowing it further, hence the palpitations.
Its good to hear you've found alternatives in swimming and cycling.
Yeah I'm just not sure if I'm completely honest. From everyone's stories it seems there really isn't an exact science. N that makes it so much harder to accept that the medication is so restricted so it's near on impossible to experiment
Frankly Hashimoto's not on my radar so I've not actively looked into it. But one thing's clear is there is a medical protocol to follow for treatment of any condition, and you need a doctor who knows how to treat Hashimoto's.
When I took levothyroxine alone it gave me severe palpitations, especially during the night. The cardiologist was puzzled and was thinking of putting an implant in my heart to 'see what was going on'.
T3 was then added to T4 (Liothyronine and Levothyroxine) and palps reduced but when I took T3 alone they resolved. That's not to say that will be everyone's experience.
I never had to consult with the cardilogist again.
Thanks for the info. Did you have a similar background to me in terms of your diagnosis or were you quite clearly Hypo?
Also are you prescribed T3 through the endo now or do you source it yourself?
All worth the try for me to be honest as I'm not enjoying the years as they pass by at the moment.
I just had a thought too, I've always taken medication first thing in the morning. Maybe last thing at night is an option? I'm just doubtful it'd have that much of an effect.
If you click on my name you can read about my journey to be diagnosed.
I was prescribed T4/T3 by an Endo initially but I then purchased my own and it is now very difficult to do so, especially due to 'shut-down' because to the virus and the BTA has now removeds older well establish thyroid hormone replacements i.e. NDTs. (natural dessicated thyroid hormones which were prescribed since 1892. Before 1892 we just died. I still take one beta-blocker when I go to bed.
75mcg levothyroxine is only one step up from a starter dose
The aim of levothyroxine is to increase the dose slowly upwards in 25mcg steps until on or around full replacement dose levothyroxine. This is typically at least 1.6mcg levothyroxine per kilo of your weight
How much do you weight roughly in kilo
What brand of levothyroxine are you currently taking
Do you always get same brand
Absolutely essential to regularly retest vitamin D, folate, ferritin and B12 too
What vitamin supplements are you currently taking
When were vitamin levels last tested
When adequately treated on levothyroxine TSH will definitely be under 2 as absolute maximum. Most patients will have TSH well under one
Most important results are ALWAYS FT3 followed by Ft4
Aiming for Ft3 at least 50-70% through range. Frequently Ft4 needs to be higher
For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common with Hashimoto’s
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)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Thank you for replying in such detail for me, please see my responses next to each point below.
How much do you weight roughly in kilo - currently 75kg approx.
What brand of levothyroxine are you currently taking - currently Teva
Do you always get same brand - have used different brands before but predominantly Teva and has been for the past 5 months.
Absolutely essential to regularly retest vitamin D, folate, ferritin and B12 too - My vitamins are all fine, I recently got Active B12 too through medichecks which was high in the range.
When were vitamin levels last tested - Sept 2020.
When adequately treated on levothyroxine TSH will definitely be under 2 as absolute maximum. Most patients will have TSH well under one - My past 2 results have been 1.9 and 1.7 TSH
Most important results are ALWAYS FT3 followed by Ft4 - Don't believe I've had FT3 tested in quite some time, I'll ask for this on Monday with GP. Latest FT4 was 17.2 (range 11pmol/L - 22.6pmol/L
Aiming for Ft3 at least 50-70% through range. Frequently Ft4 needs to be higher - I believe my FT3 and FT4 are usually and have always been in this range..
I am on a strict gluten free and vegan diet so no dairy either. Have been now for 2 years +, it did give some slight improvements..
I think based on this you'd be tempted to suggest to my GP that they contact the endo and ask for me to slowly make my way up to 125mg a day?
Recommend you get TSH, Ft4 and Ft3 tested as next step
All thyroid tests should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
I will get all my latest test results together and send them across, I don't have access to them at the address I'm at currently and I don't want to answer you in bits and bats. Would rather get it to you all in one go.
I don't have all my results as it's proving difficult to get them printed out but I have some positive news I guess...
My TSH came back as 3.3 mu/L (0.2-4) - therefore in need of a dose adjustment.
Serum FT4 5.2 pdmol/L (3.5-6.5)
I paid to see a Endo Dr privately as to not have to wait 2-3 months on the NHS. He has put me straight up to 100mg levo, wants to try get my TSH to 1.0 and then see how I am at that point with my symptoms. Also is open to trying me on T3/Levo combination in the future.
Only on this new dose for 1 day so I shall let you know over the weeks how I get on as well as including the other results once my GP surgery gets them to me printed. This my not be the answer but at least its something for me to try. Thank you
Even if we don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on, or near full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.
RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
First step is to get FULL Thyroid and vitamin testing
Get all four vitamins OPTIMAL by supplementing
As you have Hashimoto’s strictly gluten free diet often helps or is essential
We have to get ducks in a row first 🦆 🦆 🦆
If after these steps, Ft3 remains low then likely to need addition of small doses of T3 prescribed alongside levothyroxine
It’s possible, but difficult to get T3 prescribed on NHS
Often best to start privately
Email Thyroid UK for list of recommend thyroid specialist endocrinologists.......NHS and Private
tukadmin@thyroiduk.org
The aim of levothyroxine is to increase dose upwards until Ft4 is in top third of range and Ft3 at least half way 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
Just a silly question do you drink lot of coffee? Energy drinks? Supplements with caffeine? At your age (many moons ago now) i lived in Italy and was working a lot and studying always on the go to keep me going i was always drinking coffee until my heart started to have a life on its own lol was diagnosed with tachycardia and asked to stop drinking coffee after that it stopped and i always been careful not to have too much of it... Hope you find a solution...
Thanks for your reply.Yeah I've cut off caffeine in the past for months but to no effect. Now have coffee a few times a week and never more than once a day.
Hi everyone, little update. I have now managed to get onto combination treatment of T4 and T3. I was on 100mcg of Levo but now I take 50mcg of levo and 10 of T3 twice a day (20 total).
It will be 2 weeks on Monday that I’ve been on it and in complete honestly it’s not agreeing with me to this point.
I’m due to have my bloods done to check on things next week but I’d more like to ask if anyone has any advice on how to take the medication.
I know it’s important to not have iron, calcium or coffee in the three hours after taking the medication. Let’s say I wake up at 7 and take my medication straight away, I’ll currently avoid those 3 things until 10am, but I will have some form of food around 8:30-9am.
Then during the day I eat up 2-2:30pm before stopping to take my second dose of T3 around 4-4:30pm.
Again I’d then wait until 6-6:30pm and try to avoid iron, calcium in my meal.
Is there anything else you all can advise that may help me see the benefits of this new medication more?
Also any scenarios where it’s taken a number of weeks to set in with other people would go a long way to putting my mind as ease.
I'm wondering if you had success with you T3 treatment, or if you have any other information about what may have contributed to or caused your illness and (hopefully) recovery?
I have very similar symptoms to your and am desparate for answers.
Strange thing: I happened upon someone posting on reddit who had/has symptoms just like yours (and mine). Soon after, I found your profile here on HealthUnlocked. I originally thought that the two of you were the same person, given similar symptoms and because both of you posted about becoming ill during a trip to Southeast Asia. Later, I realized that (probably) you are two different people (since, for example, your ages and countries of residence are not identical).
Any updates you are willing to share would be so much appreciated.
I'm glad to say that adding the T3 did help me. After the initial period where I had problems, I found real improvements after learning to take the medication in the morning, and then leaving 2-3 hours before eating (especially avoiding foods high in calcium and iron in the first meal). Being vegan and gluten free makes this a little bit more difficult but it's more than manageable.
I'm now back to working full time, I run 4-5 times a week, completed half marathons, and scheduled to run a marathon in April 2024 also.
I have had flareups in the period between my last message and now, but flareups where I knew what had been responsible which really helps fix it and turn it around.
If you need to ask anything or to talk, let me know and I'll try to help the best way I can.
Thanks so much for your reply. I'm really glad that the T3 treatment worked for you. Getting back to running marathons sounds like a major improvement! This gives me hope! I was a runner, too, until *this* happened ...
Did all of your symptoms disappear after the T3? I read that you were having strange dark yellow urine - did it normalize? (Sorry to bring up such a personal-type issue - it just seems like other people I find who have symptoms most like mine also have this odd bright yellow urine.) Did you ever have a vibrating sensation throughout your body - like muscle twitches or vasospasms all over? I read that even your hair was falling out - did it ever grow back?
I'm curious to know about your flairs after starting the T3. You mention being able to identify certain triggers. Were these always diet related, or relating to timing of your medication?
Would you mind if I mention your HealthUnlocked profile to the reddit user I stumbled across who also developed symptoms like yours while travelling SE Asia? I wonder it your experience could help him.
I'm sorry to ask so many questions.
Thank you SO MUCH for all of your help! And I'm really glad that you are doing so well!
You will get back there, just try and be patient as possible when things aren't going as you'd hope.
No I wouldn't say all the symptoms disappeared but they lessened to where they're more manageable now. My urine did improve yeah - I don't have any reasoning as to why but it did. I did have those muscle twitches too and again they have gone away. I don't know whether to look too deeply into these symptoms though as they're probably the result of being inactive more than anything? As for my hair, it's certainly thinned since 2017 but that may just be natural ageing at this point.
Flares for me would happen if I don't take my medication correctly. For example, if I eat too close to taking my medication too often. More so though, flares would happen due to diet related things. Have to be incredibly careful with any alcohol intake too!
I'd rather you didn't share my profile as such but feel free to share the link to this thread - hopefully as you say, it can help someone. Even if it's just a bit of hope that things will improve.
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Awakened with rapid pounding pulse and profuse sweating.
irregular heartbeat
Half a Pound to my first Stone!
Pounding pulse wakeup
Ectopic heartbeats put me in a cardio ward today. 
