Just spent 2 days of being checked at hospital, endless ECGs etc because of a tachycardia episode. While I was there my autoimmune condition of course came up.
The conversation went something like this -
Dr - do you have any other existing conditions
Me - ME and Hashimotos
Dr - you mean you HAD Hashimotos
Me - no I still have it
Dr - no you don't. It comes, attacks the thyroid and then disappears.
Me - oh, I thought you had it for life
Dr - no, attacks and then whoosh it is gone, so you don't have it anymore
Me - oh....ummmm.....then why are my antibodies still so high
Dr - well that needs investigating
(Later.....Dr - you don't have a thyroid problem, we have checked - for one thing you haven't put on enough weight)
If I hadn't felt like my heart was exploding out of my chest I might have argued but I was feeling ill, brain fogged and disorientated and what's the point. That level of not just ignorance but downright wrongness is scary .
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PurpleNel
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"we have checked " checked what ? ..... was it not an NHS GP who agreed to put it on record and prescribed you 50mcg Levo last year... has that evidence 'Whooshed' away too ?........ or was he just looking at current blood results from hospital .
I never put much weight on either perhaps half stone at most, but i had become very skinny before so it didn't show anyway .. i probably looked 'healthier' .. my cheeks and eyes and the bridge of my nose went a bit puffy/lumpy ... some of us just don't ... But my TSH was 6.8 and my TPOab were >3000 , and i'd already been symptomatic for about 4 years following a birth.
Bizarre conversation. It's so worrying when you feel your health is entrusted to highly trained health professionals who seem ignorant of your illness. It's such a common condition so why aren't Drs more knowledgeable? Hope you're feeling better now though.
yes indeed ..and i found 'feeling so lousy i don't have the energy to go to the shop / carry shopping home / stand up for half an hour at the hob , and regularly slumping into a semi coma before dinner is served' ...... is quite likely to result in me loosing weight too.
Hashimoto's thyroiditis. They need to look up 'itis' in their medical dictionary. Here is a list of a few other itises that go whoosh affixes.org/alpha/i/-itis.html .
Regardless of the conversation with the ignorant doctor, I'm impressed that you had investigations for your tachycardia.
When I had my first episode a few years ago, I was taken to hospital in an ambulance with a heart rate of 170 and BP of 190/??. One and a half hour's drive to hospital (I live in a rural area), wait in ambulance queue outside for two and a half hours, once inside a one minute ECG, one BP test and blood draw. Left completely alone for 3 hours, nothing to eat or drink and nobody checked on me. When doctor eventually came, no discussion, checked my heart, said "You're fine, you can go home. If heart rate goes over 120 again call an ambulance".
Well, it did go up to about 150 next time, I called an ambulance and they offered to take me to hospital. I said "Don't bother" and when I explained what happened the previous time they said they didn't blame me!
Looks like the hospitals are as bad as the GPs where I live 🙄
I hope you got some answers from your investigations 🙂
Hi and thanks for your response. My results were very similar to yours - heart rate 170 and BP 190. I picked them up on my BP monitor and thought I must have read it wrong. When it kept coming out the same I called 111 for some advice and was told to make my way to A&E immediately as heart can't maintain that pace for too long. Very reluctantly I went and over the course of the next 8 hours was given endless ECGs that kept coming out abnormal. I too was left for hours in between with my heart feeling like it was going to explode out of my chest. I witnessed some terrible care of others while I was there.They eventually got it down with some medication (think it was a beta blocker?). They are going to fit me with a 24 hour monitor as they said they can detect a flutter with a stethoscope. Originally told me that if I had it again I must call 111 or even 999 straight away, cause for concern blah blah blah. The doctor left the room to speak with the consultant one last time and returned a little later like an entirely different person. She said something about GP notes, told me nothing wrong with my thyroid and said if it happens again have a cup of tea and massage my chest, no need to call anyone. The only thing I can think to account for the sudden abrupt change in attitude is something in some notes somewhere that said I was an attention-seeking/neurotic/hysterical woman??? It was almost surreal.
Today my heart rate keeps rising to around 125 but oddly, usually only when I've just stood up for something and it is a very big rapid rise. When I lie back down it comes back down again.
I am obviously concerned (hard not to be) but wondering if you still have this Seaside Susie or it has righted itself with thyroid levels being addressed? What do you do? Does yours come down quickly or stay high for hours? Does it get worse on standing? Sorry for all the questions but trying to understand if I just need to file this away with all the other not-quite-right symptoms and results and stop worrying.
said if it happens again have a cup of tea and massage my chest, no need to call anyone.
It's like reading a work of fiction! I was told by the hospital and the GP surgery that if it goes over 120 (resting heart rate) to call an ambulance.
wondering if you still have this Seaside Susie or it has righted itself with thyroid levels being addressed? What do you do? Does yours come down quickly or stay high for hours? Does it get worse on standing?
I have never connected mine with my thyroid, my levels are pretty stable and I private test regularly and if necessary adjust dose to keep them there. Heart problems are rife in my close family and even though there is only my brother left now he was diagnosed with Atrial Fibrilation in his later 60s, so I think it was inevitable that I would probably get some kind of heart problem at some time.
I've had this sporadic tachycardia for a few years now, sometimes short gap between episodes, sometimes I can go a year. Referrals to cardiology have been cancelled because when they send off results of heart monitor - 24 hours, 48 hours, even 14 days, they say there is nothing untoward showing so my referral is cancelled.
After the second time an ambulance was called and I realised there was no point in going to hospital, I've just sat it out at home. Might not be the best idea, especially considering how far from hospital I live, and if I lived in a city with a hospital quite close I probably would go to hospital.
It has usually lasted for a few hours and I don't try to do anything, maybe make a drink or something to eat, that's all. I let my son know if I'm having an episode (I live alone) and he checks on me and as he used to be a First Responder he'd make sure to call an ambulance if he thought it was necessary.
I was originally put on BP meds as my BP even at home was showing over 140 systolic. My most recent episode of tachycardia (last year) actually showed a low BP (90 systolic) so I rang the surgery to be told to stop the BP meds. I said I didn't think that could be done, just stopping abruptly, but I didn't really know. Anyway, after almost begging to speak to the Advanced Nurse Practioner who knew my full history I was granted a telephone appointment with him. I explained everything and he spoke to the doctor who said to stop the BP meds. He got back to me and said they'd put me on a betablocker (Bisoprolol) at a very low dose (1.25mg) and because that also lowers blood pressure then to stop the BP meds. Since then things have been stable. However, my tachycardia has no pattern and no triggers and just happens so I don't know if the problem is solved or not, time will tell I suppose.
It is always so interesting to read the story of others, so thank you for all of that. I think I instantly assumed it was thyroid connected, especially as so much else seems to be. And also as my TSH had gone up again on my last thyroid test a week ago to 4.8.I think I too will just sit it out and see what happens. My BP monitor has also recently started showing an irregular heartbeat about once a week but I suppose it is just a case of catching it because, like you say, if something isn't present all the time then the monitors will miss it anyway.
She said something about GP notes, told me nothing wrong with my thyroid and said if it happens again have a cup of tea and massage my chest, no need to call anyone. The only thing I can think to account for the sudden abrupt change in attitude is something in some notes somewhere that said I was an attention-seeking/neurotic/hysterical woman??? It was almost surreal.
This is more concerning than the ‘whooshing Hashimoto’s’ notion.
Ask for a full copy of record and notes from Hospital. Then you can see what they read and all results on record. Was any blood tests done, showing thyroid results on this recent visit?
webpages usual lists a health records department / library. Often a person contact or department email & address is listed. If not try the switchboard and ask it there’s a records department.
Then they usually have there own application form where you can request single, or entire record. Usually ID and a witness signature is required. I have done this and submitted information entirely via email.
Thank you for that. Not sure what is on my GP notes any more I am going to try increasing my NDT but I m concerned about low cortisol. I have been told that very low cortisol (I am right at the very bottom of the range for waking levels but still in range). will reduce efficiency of thyroid meds.
This sounds like a comedy skit. Except that it's more like a crying shame that our well-being depends on these kind of Dr's who know so little. How is one supposed to get well when the Dr spills out this kind of information's????
Reading your exchange was like entering the twilight zone. You have my sympathies for having to dealing with incompetence, ignorance and gaslighting at such a vulnerable moment.
I've been dealing with tachardia accompanied by excruciating pain that causes me to stop and clutch my chest for almost a decade so I can relate. I've had a holter monitor done and was offered a beta blocker but I've refused since they reduce blood pressure. I have really low blood pressure already. When my thyroid levels are worse than usual my tachycardia gets really bad. Also when my ferratin drops midway I tend to experience more tachycardia/chest pain.
The specialist I saw years ago said that my tachycardia was due to how my body was made. That some hearts race more than others. What he said didn't make sense then nor now.
Thank you for sharing your story Nd your supportive words. It is interesting to hear that your tachycardia correlated with your thyroid levels worsening because that is the same for me. I also get those chest pains. So sharp they make me gasp.In some ways it is also reassuring to know that you have lived with it without anything more happening but I am so sorry to hear if your prolonged suffering
Later.....Dr - you don't have a thyroid problem, we have checked
I know you haven't been on Levo for very long so your thyroid results won't be optimal yet, but they will have altered (and hopefully improved) since you started the Levo. For the doctor to tell someone taking thyroid hormone replacement that they don't have a thyroid problem is absurd.
I can imagine a situation of someone having a thyroidectomy, being put on thyroid hormone replacement of some kind, getting TFT results that showed results that doctors considered "normal", and then the patient being told they don't have a thyroid problem and they don't need treatment. Thyroid training of doctors is so poor that I wouldn't be surprised if they've nearly killed or actually killed people as a result.
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On the subject of tachycardia I developed this about 10 years ago, maybe a bit more. I found out by getting out of bed one day, then getting a very uncomfortable feeling in my chest, including pain. An ambulance was called. It turned out that my heart rate was 150 bpm.
I was taken to hospital and put on a heart monitor that showed my heart rate not really changing over the course of a few hours. But eventually I was given a prescription for beta blockers and then I was discharged. Despite the beta blockers it took four days for my heart rate to drop below 100 and by the end of it I was absolutely shattered.
Thank you so much for sharing your tachycardia experience. It is so helpful for me as this is all so new and it was, initially, a little scary. I also am feeling shattered like you were. The bad day was Sunday and my heart rate is still thumping - has-been around 110 for most of today - as high as 125 so still too fast but nothing like it was when they monitored it in hospital over the whole day.Did they ever explain to you why this happens?
2) I had a long-term chronic GI bleed and my iron levels were severely low. Low iron is known to cause tachycardia and chest pain, but medical sources rarely mention it. This link does, but just in passing - look at the symptoms and complications :
3) I was untreated for thyroid disease when my tachycardia first started. Before I started treatment I discovered my T3 was only 11% of the way through the range. My TSH had been over the range for 5 tests in the previous four years but doctors hadn't even mentioned it.
Edit : I had to find these possible causes for myself. Doctors never mentioned them or considered them.
Thank you so much for this info. Interestingly I have taken amitriptyline in the past, just occasionally to help me sleep but not recently. My latest iron results suggest far from optimal too so that is another similarity. Latest thyroid results show T3 40 per cent through range so nowhere near as low as yours but still not great. (My T4 is an even lower percentage which I didn't understand).I think at some point during my 2 days at the hospital anxiety was mentioned but I might be getting muddled.
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