(My original post describing symptoms and within the thread a long list of blood tests had so far:healthunlocked.com/thyroidu... )
The fast heart rate I've been having is becoming more troublesome along with a pressure in my neck (and more recently pain on the RHS).
So yesterday my sitting/resting heart rate was in the mid 90s and increasing so I go to lie down for a while to lower it, which has worked well the last few months. It didn't work this time so I go into the garden (it was freezing!) for some fresh air and within a minute my standing HR was 67 - unbelievable!
I found a similar situation with a cold shower in the evening, it lowered my HR considerably and even helped with my sleeping HR, but unfortunately it creeped back up while I slept.
I've attached a picture of my sleeping HR graph from my smart watch... This is one thing that has me on high alert, because my sleeping HR used to be in the mid to low 60s when I was having more good days and is creeping up now with the more 'bad' days I'm having. Has anybody else experienced this?
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Mine is averaging 85 to 90 at the moment. Sometimes we can suffer with “white coat syndrome”. I am not saying this is the case with you but I once had to wear a blood pressure monitor because my GP had taken my blood pressure and said it was too high I was found to have normal blood pressure and it was the stress of having to argue my case with my local GP
Are you suffering with a flu bug or do you have stress. Both these things can raise your heart rate.
Ah I appreciate this and do consider it regularly... It's the combination of many problems that are getting worse that makes me know it's not 'in my head' if that makes sense.
Interestingly I have a 24hr BP monitor upcoming so that could offer some info.
Ah I'll do that thanks Lora7again. And I've been suffering a few years now so in my experience things aren't much better I'm afraid... Unless I'm an outlier of course.
Ah, now we're talking. My body seems to get annoyed when I eat, and sugar does kick it off. Been through a period of zero appetite for a couple of months recently and lost a load of weight (I needed to, tbh), but appetite is back currently.
I really want to exercise but I pay so badly afterwards it's putting me off. Last time I tried I could barely stand in the drs waiting room before my appt, which was worrying. Night time HR after exercising during a day goes even higher. I tried twice in October when all this kicked off and both times wiped me out completely in an unusual way (I used to run half marathons and gym each day so I'm no stranger to the good type of exhaustion), so it's put me right off incase I blow a gasket or something.
Most doctors have very limited knowledge and understanding about POTS & dysautonomia. Recommend heading to a specialist thats listed on the POTS UK website. If you can go privately then so much the better. potsuk.org/clinics/
Have a look around the POTS Uk website for coping stategies etc
For me, I am better with unprocessed foods low in carbs. It took many years before I could exercise but slowly I'm getting back to it. Recommend building up time on a rowing machine.
Ah thank you re the POTS info - a list of helpful specialists could be useful... It's an avenue I may need to investigate. My pots symptoms are transient though, which is the problem. I had it SO bad a couple of weeks ago (lying down every five minute to try to help!), but ATM it's not bad but I do get drained through the day.
Yes it seems related to food in someway... I wasn't sure if it was salt related for me... Like if I eat low salt I get troubles, but feel better with salt intake.
I like the rowing machine idea too, at least that's exercise from a seated position which could be easier!
Dysautonomia... I've read a little about this, but will have a proper look - really appreciate the suggestion. Much of my research led me down the path of the vagus nerve, which seems relatable to many things I have going on... I think this is related?
I've had palpitations for a good while and hence had 24 HR heart monitors but only came back with like 4 ectopic beats over the whole day so they discharged me as such. I. Fairness, I think taking magnesium has got rid of the palpitations at this point so I'm made up with that, but all my other problems remain.
I can understand how frightening a high heart rate can be I actually collapsed in A&E because I thought I was having a heart attack. The doctors and nurses went into cardiac arrest protocol which was terrifying. I rang my children to tell them goodbye because I thought I was dying. I hope you find out what is wrong.
Also coffee affects my heart so I would avoid it if you can
Oh wow that is frightening, and I can relate. I've got all my affairs in order and written messages to all my loved ones just in case because I've had a few scares so far. Not something I thought I'd need to even think about at 40.
Wow, yes even on a quick search I can relate to a LOT of things here. Even the pupil issue, mine can't stay still for even a couple of seconds when shining a light into them, they open and close.
What issues did you have if you dont mind me asking, and are there specific tests that can help in a definitive diagnosis?
Description of dysautonomia symptoms including Adie's pupil, gastroparesis and HR issues
Yes I did read about that as a possibility as well... Another strike towards the adrenals with my low blood cortisol reading previously, so this is the path I'm currently investigating with vigor.
I just want to note I have hashimoto's and suspected cfs (waiting second attempt at referral, first rejected due to new symptoms that were later dysautonomia) and some symptoms cross over or get enhanced by dysautonomia.
We think I had dysautonomia at a lesser degree in 2020 that was not diagnosed at the time and may have lessened or gone into remission until 2024.
I got a sinus infection at Easter 2024 that triggered symptoms that worsened over a few weeks until I was bed bound. At first I thought it was a return of allergies as I got breathless and that pressure in my neck. I already suffered with ongoing fatigue but it began increasing to a whole other level.
My heart rate went higher and higher and I couldn't even turn over in bed without my heart racing and palpitations. Getting out of bed to do absolute basics took a couple hours recovery. Having a bath and water temperature made my heart go very high especially just stepping out and it used to take 4-5 hours to recover.
Horrible fatigue.
My resting heart rate was high but moving even a little around the house was like running a race. I got breathless on relation to the heart rate.
Also had digestive issues. Very random vomiting, stools that seemed loose and or undigested. Muscle weakness, soreness not in proportion to physical activity.
I got high heart rate standing still (for example washing dishes or preparing food).
I started getting what felt like panic attacks or entirely overwhelmed or sad which is a fight or flight response both physically and emotionally but unconnected to thoughts.
Its been around 9 months thereabouts. I take beta blockers and do a lot if pacing from chronic fatigue syndrome guidance.
Some of the above symptoms have gone away and others have lessened or are less frequent.
I continue to have my heart rate going up with movement despite medication, but doesn't go as high and comes back down far far faster.
I have strong fight or flight responses to stress triggers (which my body takes as stress not necessarily mind).
My muscle weakness has improved a lot.
My muscle soreness has also improved and I seem to have more issues with shoulder arms and back muscles rather than all of them.
My fatigue is a lot closer to what it was before dysautonomia over a day. But individual activities physical or mental give me small bouts of fatigue and drowsiness that require a lay down but not sleep. Have got that down from every tiny thing needing a rest to sit downs in the day and a lay down around 2.
I have forgotten in all of that brain fog that links directly with level of fatigue.
Anyhow, those are my main things, I have probably forgotten some.
Also, despite my thyroid levels and medication being better I continue to have some symptoms in that respect too.
Ah wow that's a lot - I sympathise completely. Really glad to hear that things have improved for you more recently though!
My doctor has offered me beta blockers, but I'm very dubious about medication and always have been. Well, not just medication, but 'masking' symptoms if you know what I mean. I told him I want to know the cause of my heart rate probs and palpitations before I fix any of the symptoms. I suppose I suffer a little more than necessary because I'm not even one for painkillers, I'd much rather know where my body was up to as the pain is there for a reason.
Still, once I know for sure what's causing all these issues I'll be happy to take meds for life if that's what it takes to get me back to normal or even close!
Thanks for sharing your story - it's good for others to know there's some light at the end of the tunnel!
Really just adding to what has been said , with a different spin/ experience. I have had Long Covid for nearly 5 years, first and persistent symptoms being high BP and HR…put on 5 hypertensives , including beta blocker bisoprolol, but no improvement, infact getting worse with faints ( wondered if this linked to your comment re.barely being able to stand in Gp waiting room). Eventually found a specialist to be referred to from map of clinics on Pots Uk website ( even 18 months ago it was very out of date, of 4 nearest clinics nearest to me, which were 2 hours away, 3 no longer worked, and my specialist Falls Consultant working within a Geriatric Dept has since retired)… got tested with tilt table. Found what I thought was POTS ( from DIY NASA lean test at home) was infact postural hypotension , ‘definitely not Pots’ though seemed to meet stat.criteria…Bp dropped to 61/40 while HR compensated to 135+ to get oxygenated blood to brain. First thing Falls specialist did was remove bisoprolol, as she thought it hindered body’s need to get heart pumping blood to where it was needed. But get random HR rises doing small domestic jobs: emptying tumble drier 145, standing trying to make cheese sauce at cooker 150+ and breathlessness doubled up like done a 4 min.mile. Although I have managed to go swimming 50 mins 5 days a week over last 21 months, no improvement…I’m looking at trying the vagus nerve stimulation ( with help from specialist Facebook Group…though having difficulty choosing a device as brain fog won’t cope with info overload and statistics!). Anyway have a go at the NASA test to provide ‘proof’ for GP, and have a look at the clinics’ map and have a phone around to see who is still working with tilt tables/ diagnosing dysautonomia. I found cardiologists where I live totally uninterested as scans showed heart physically ok. But my favourite relevant site is run by a London cardio ‘ stopfainting.com’…very up to date. Have had GP convinced that despite OH diagnosis that high HR was ‘overmedication of Levothyroxine’, but a NHS endo.( who I chose as one interested in hypothyroidism and heart problems) said ‘no’, and thyroid hormones do not seem to have been obviously effected by Long Covid. Good luck.
Thanks for your story - have you ever heard of Pheocromocytoma? The only reason I mention this is because I did some heavy research in this area and the hallmark of it is hypertension that is resistant to hypertensive medicines.
I'm still open to this avenue in terms myself, but some testing is suggestive this is not my root cause.
Btw, I'm sure you can tell this by reading the thread but I'm not in any way shape or form medically trained and not suggesting it's your problem either!
No had not heard of pheochromocytoma…looked it up but other than fast HR don’t really fit with the sweaty, pale, headaches etc symptoms. A lot of US dysautonomia sufferers talk about the epinephrine etc hormones but all I have had tested have been cortisol…I did the private saliva test showing it was too low on waking but too high rest of the day/ night; while the NHS waking blood test was around 550 ie ok. I was interested in the kidneys and hormones ( renin- angiotensin axis) and way they could go array giving incorrect sodium, potassium etc etc levels…but nothing matched NHS bloods. Thus trying the vagus nerve protocol next…. The vagus nerve facebook group is called ‘AVA A Vagus Adventure’ if you want to look/ join.
Hi again, I read you loud and clear there and can relate.
The vagus nerve is very interesting to me, particularly as I have neck pain in this area and associated problems, so thanks for the tip off. I found out about this nerve a couple of months ago after some reading around my high heart rate. My interest was piqued when I tested and my gag reflex was completely gone. I can also 'manipulate' my heart rate to some extent with a cold pack on my neck, which I assume stimulates the nerve to bring the HR down. I experiment a fair bit after this and have found that cold showers, slow breathing (an obvious one), and even closing my eyes for a while helps me lower the HR.
The complexity of the human body is astounding... I can see why doctors have so much trouble finding a diagnosis for some of us with many symptoms as they seem to span a massive range of different problems/systems.
Have you had a recent iron panel done? Low iron and/or low ferritin (iron stores) can increase heart rate, fatigue, and breathlessness. And please note that doctors define "low" as being below range, but as a patient I define "low" as being "low in range" or "too low for me to feel well" because I care about symptoms but doctors don't.
This is old but is well worth reading on the subject of iron deficiency, its effects and associated symptoms.
Ah thank you humanbean; yes I've had my iron panel done a few times because I have one hemochromatosis gene so my ferretin is consistently high (600-700), but 'iron' in the normal range from I understand. The Transferring saturation has been 50% but was 36% last time it was checked.
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, the attached image was my heart rate from last night.
Very high heart rate after exertion/exercise
Low resting Heart Rate after Total Thyroidectomy
Hashimoto’s heart rate increase
Heart rate 
