So to follow on from yesterday I woke up feeling better this morning and my overall resting heart had gone down a notch - I did usual routine and even went out on my motorcycle but since 13:00 I can’t get my heart rate back down sitting in mid 90s up in the low 100s now so I’m now 100% convinced something has gone haywire with Graves….
Looks like I’ll have to start all over again now that’s if something serious doesn’t happen overnight … I just don’t understand it, no digestive issues that I can pinpoint, no weight loss, no cramps (used to get them bad when hyper), no hand tremors or uncontrollable hunger, hair seems to be falling out less, no rage issues, yet this heart rate???
I’ve wanted to give up a lot but I really am at the end of what I can deal with with this peice sh!t disease! Even writing this it’s sat at 105bpm 🤷♀️ and I’m just sat here. Just want it to take me and be done with it 😡😖
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My own heart rate a minute ago was 107, and has ranged 48 to 146 today. With resting heart rate usually hovering around 90.
And it has at times been above 190.
But between about a year ago and now, my heart rate has generally been slightly more stable, and hasn't peaked as high. That vaguely aligns with changing dose of levothyroxine from 112.5 to 125.
The reason I am replying is to suggest that while heart rates are important, and they are affected by thyroid hormones, the story often isn't at all clear.
I have a private blood test I could do on Tuesday see if it’s that … just went for a walk to the shop and initially I rocketed to 167bpm - never ever seen it that high then quickly came down to my normal walking pace of 120bpm and now it’s at 76bpm 🤷♀️😂😱😭
I have been on a hospital bed watching the ECG going between 80 and 180 (or around that) within seconds. And back.
Part of me is lucky that I hardly notice it at all. On the other hand, that can be more worrying.
But seeing it can make it worse. If, for example, I can seen those sorts of results on my Apple Watch before seeing it on a proper ECG, I would be every so much more concerned.
Yeah I only know through my Fitbit as although feeling a bit weird I’d not know I had jumped up that high … I can’t ever really feel my own heart beating and really struggle to find my pulse .. 😕
I’ve not a damn clue I wish I had something but nope I just went for a walk to the local shop and it rocketed then came back down to normal walking pace of 120bpm now in the 70s - I give up I have no clue what’s happening to me 😂🤷♀️😖
Is your condition permanent must be awful I’m sorry you’re dealing with that 😞 I wish I had better words for you … but sending a virtual hug x
With anxiety, my heart rate can remain high for several hours. As I’ve said before (in previous posts), checking/ rechecking heart rate (or other adverse symptoms) can actually make things worse. It can send you into a spiral of ‘catastophising’ (ie thinking the worst possible outcome). Sending you best wishes 🦋
Thanks buddy I was completely relaxed when I checked it so it was weird then tried to have a nap to catch up on myself after a busy morning and nope it just wouldn’t come down enough to do it - usually when poorly a nap is my go to for sorting things out 🤷♀️
It’s very well known on the heart forums that constantly monitoring your rate with a Fitbit or similar is a major cause of stress which sends it even higher, many people buy the gizmos and they end up in the bin for that reason !
I’m like you - I mostly use it to look at the number of steps I’ve taken. I looked at my heart rate when it was over the top because I felt awful - I didn’t expect it to show what it did.
I use the timer quite a lot and look at the weather forecast bit and the rest of the stuff I don’t really bother about. I like it though.
Last time my heart rate went totally berserk was in 2021 when I had fractured my sacrum and was prescribed Naproxen along with omeprazole as a ‘tummy protector’.
My heat rate went up well over 100 and stayed there. It feels really horrible - completely different to your heartbeat going up on exercise. Anyway my GP said to stop the naproxen and double up on the omeprazole which I did by that time I had the diarrhoea to end all diarrhoea which didn’t stop until I stopped the omeprazole too.
I’ve got an Apple Watch but I’m not sure looking at that was the cause - just kind of confirmed what I knew anyway. Still using my Apple Watch though. My relaxation thing is to breathe in for 6 hold the breathe for 6, breathe out for 6 and hold for six before starting again, I find it’s great for sending me to sleep if I wake up in the night.
Whenever I try the breathing thing it goes down for a few seconds then goes worse than it did before I've yet to find a method that works for me - apart from what appears to be exercise - but that does make any sense at all 😭
Hello - no other prescribed medication - I take vitamins E, D and B complex, L-Carnitine, Selenium and magnesium (I get a lot of debilitating cramps when Hyper) - caffeine doesn't have an impact on me ie no changes to heart rate and never has but I only have one or two cups of coffee a day anyway ... the only recent changes I can think of is a reduction approx. 4 weeks ago from 3/4 5mg carbimazole to 1/2 carbimazole daily or the stress of the endo appointment which was last Tuesday .... although I only have telephone appointments I found it really stressful as I hadn't received my results from my blood test prior t the telephone call .... and since that call although he said pretty much sweet FA apart from you're "spot on" I've felt really quite unwell .... I don't have anything other than that to go on My son will do a private finger prick test on me tomorrow morning see where the land lies .... was very unwell last night, hot and cold and tingling in my feet hands and face, hardly slept etc .... sigh
I was diagnosed with Graves in 2009 and had radio-iodine treatment in 2010. I was VERY hyperthyroid (literally off the scale) because I thought I was menopausal and didn't go to the GP quickly enough. All in all it took three years of treatment before I was settled on Levo, but I've been on 125mcg for 12 years and everything has been stable. You need to have blood tests to find out exactly what's going on. Then you need whatever treatment is required. It's a long and, sometimes, depressing road, but you will get there with perseverance and the right medical support. Don't lose heart.
Yeah unfortunately I've been on this journey for a while now - and had tests just under two weeks ago TSH 0.94 (within range) T4 15 (just under middle of range) but I think in that time I have somehow rocketed - unless I have something else?! My joints have started aching this evening and I've become quite tired - I wasn't stressed in the slightest after my ride out so I can only assume that I have rocketed back to hyper again - although feeling quite stressed now knowing I'll have to up my dose of this vile medication that makes me so ill
Personally I wouldn't be able to consider RAI and have told the Consultant that - as I have pretty much 90% chance of breast cancer, and although they've found no gene, the obliteration of the female population in our family states they either haven't found it yet, or we're exceptionally unlucky. I can't have the contraceptive pill or HRT when the time comes. Although Consultants say it's inconclusive regarding the RAI and breast cancer link - none have felt confident enough to want to sign an agreement stating I can sue them personally should I get it within five years of treatment ahahaha
I am devastated that I spent so much time and effort trying to get well and I appear to be right back where I started two years ago - feels pointless now tbh.
Anyway I'll take myself off to bed and hibernate for a few days and contemplate what I'm supposed to do next I guess
Whilst I have had to consider myself ‘cowardly’, I now defy anyone to put up with those sort of symptoms while you are climbing the wall and awaiting timing for blood test results ‘to see what is happening’. I have just replied to Prosecco1997 post this morning about similar.
As I said there. This is an important enough issue to be properly attended to. The knowledge is ‘known’. What are medics doing about it? Well in many cases the ‘wrong’ things, not taking a ‘panoramic’ or an ‘holistically’ determined view. Looking at it only from their own ‘specialism’ (e.g. cardiologists). Too narrow. Really IMO medical negligence.
I have found that ‘not knowing’ when my heart rate is raised (or some other cause) itself can be disconcerting. I have come to discover another symptom grouping very much associated with it. I call it my unknown “unwellness” syndrome. I can’t sense my heart is working overtime but I feel nauseous, a lump or spasm in my stomach that won’t release for hours. Heart rate I have found (purchased a oximeter) during these episodes to be raised only slightly BUT from a low (chronic) resting heart rate any increase is disturbing to the body I have found.
The condition POTS or high blood pressure springs to mind🤔…ie there are many things that cause this. As you know below 60 bpm is classed as very low…90 ish is more normal .
Also, consistently higher bpm or up and down is relevant.
Are you taking beta blockers? I took them daily for years and then as required. Made me feel calmer and reduced the RHR fairly quickly. Also reduced my tremor. Doses ranged from 10mg to 40mg depending on the day. Bonus, no migraines.
I have severe Graves since 2016. I have had a lot of severe symptoms with my heart when hyper and usually end up in A&E with off the scale racing heart (too fast for me to count the beats), severe breathlessness and chest pains - very worrying. I'm now on block & replace (thats Carbimazole/Levo both taken together) which has managed to stabilise me although still have other symptoms but not ones where I feel like I will die.
A heart rate of around 60 - 90 bpm I believe is normal and a heart rate a bit over 100 is not outrageously fast but if you don't think it is normal for you then you need to tell your GP you think you might be going hyper and get thyroid bloods tested again if it persists. Just because you had them done a week or two ago doesn't mean you can't suddenly go hyper - I have - as if you have high immune antibodies as I do (TRAb) then this can often mean you can go overactive very quickly and severely - my endo said you could test one day and be okay and sort of the next day go hyper so if you think you are then get them tested again.
I also have had issues with my heart just taking off at fast rate when resting for no good reason and even when my thyroid bloods were normal. If this is the case with you then I suggest you get your GP to send you to cardiology, as mine did, to get a 24 heart monitor/trace. It's just a small electronic device which you wear under your top and it just has some sticky pads which attach to your chest - the hospital fits it and then you go home and wear for 24 hours (even whilst sleeping) and it just records a heart trace for 24 hours. You then take it back and they analyse the recording ( takes a few weeks before you hear anything back) and see if anything is amiss - if your heart/rhythm is working normally. They can tell a lot from it such as irregularities such as atrial fibrilation etc. among other things. I've had two and they're easy and painless to do and not uncomfortable. You can still exercise and do your normal stuff. I had a cycle around when I had one. You just have to wear it for the day and not get it wet - so shower just before you go to get it fitted. On the days I had it though nothing out of the ordinary happened but they said they couldn't see anything from the recordings - so it is reassuring.
You are best to get checked out though because I had a friend (of a friend) who had Graves and had a heart attack and died in only his early 50's which was caused by his not properly controlled Graves. I don't know why it wasn't controlled - whether he wasn't taking his meds properly or he had just gone hyper all of a sudden - which is dangerous and can happen - I don't know. I don't want to scare/worry/panic you (as that will just make your heart rate higher) but just want to point out why you should get it checked out asap and not just leave it. I have mentioned about him in some of my own posts on here and in replies to some others as it really worried me to personally know someone who it had happened to but many people don't appreciate how serious Graves can be - it can be life threatening. It is known as thyroid crisis (or thyroid storm which you may have heard of).
Hope you sort it out but try not to get over stressed/anxious as that will just make it worse - although I appreciate when you don't feel well it is easier said than done.
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I've yet to find a method that works for me - apart from what appears to be exercise - but that does make any sense at all 😭
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