sunbun

I know the amount they take is pretty minuscule (around 25ml) but I’ve had 3 sets of labs within 6 days and the one today hit me hard. Already slightly anemic which doesn’t help. Heart rate is now 160+ standing up from 120 earlier today. I also ate some chocolate to get my blood sugar up and forgot chocolate is another trigger for my tachy. Anytime my heart rate climbs this suddenly I tend to get anxious. Does anyone else react like this to even small blood/volume loss?

I’m so sorry to hear about your diagnosis but also happy you finally found out what was causing your symptoms. Thank you so much for all the useful information you’ve given, I never knew there were so many other facets to investigating thyroid disorders. I’ve also heard about the gut thyroid connection! It’s amazing how our microbiome influences so much. I’m definitely going to ask my GP for more thorough thyroid testing. Take care.

As far as I know I’ve had my thyroid levels checked many times at the ER. I’m not sure if they test all TSH, T3 and T4 and free T3 and 4, so I’m going to ask my dr today. But what’s weird is I have all the symptoms of a thyroid disorder. Swelling under neck area, problems with weight (either gaining or losing it way too easily) as an adult my eyes have become more protruding and bulgey and buggy (in fact I was looking through my old pictures as a young teen and noticed how much less buggy my eyes were back then, I have a lot more upper eyelid exposure now and my eyes are much rounder and they seem to bulge a lot under the lid to the point you can see it from the side, up until I was about 16 I always had hooded eyes with hardly any eyelid show, and now they just seem to be getting bulgier and bulgier, I get a lot of pressure too and sometimes feel like they’re going to pop out of my skull lol) I have zero energy, very slow or very fast digestion, dry skin but also sweat a lot and am always either freezing or boiling hot, dry brittle hair which keeps getting dryer as I get older. I also have outer third eyebrow hair loss, as well as blood sugar crashes and insulin resistance despite a healthy low carb diet. I also have these kind of adrenal crises where my blood pressure and heart rate will go through the roof and I become extremely agitated and overheated and feel like I’m going to collapse, but it always gets blamed on on anxiety or hyperadrenergic pots. Like I said I look pretty thyroid-y so the dr looked at me she immediately suspected thyroid and was surprised when it didn’t show anything. My dad’s side of the family all struggle with thyroid disorders too. I feel like it’s hard to differentiate pots symptoms from something like thyroid disorder. I keep reading that these tests are very sensitive but are there any way they could have missed it on the blood panels? Are there any further checks I can get to rule this out?

I get this feeling frequently too, it was actually one of my first symptoms of POTS. I would be sitting there watching tv or reading a book, and suddenly it was like I was fainting and falling to the ground but I was perfectly still, or dropping in an elevator, like I was falling and moving towards the floor but everything around me was staying where it was even though I felt like I was falling down down down. It would scare me so much I became afraid to leave the house. It’s kind of like when you are on your phone and you scroll down the page, except everything around me was the page and my eyes and body were scrolling down without me moving. It would really frighten me because it felt like presyncope and sometimes I would yell out or scream because I thought I was going down. My dr claimed it was vertigo but I’m pretty sure it was transient drops in blood pressure or low iron. When I’m really anxious and flareing it happens more frequently too.

Usual HR is 80 at rest and 120 standing. Recently had flare where resting HR was 120 and standing was 150-60+. Last two days HR was 55 at rest and 80 standing which is very low for me and makes me feel very lightheaded. I woke up from a nap an hour ago to get some water and bam, HR is back to 80 + 120 just like that. I know none of these HRs are particularly concerning but they each make me feel really woozy because I never know which one I am gonna have when I wake up. Just wondering if it’s normal to get such large fluctuations in HR day to day. I’m assuming it’s all just part of the nervous system being out of whack.

As a fellow UK resident this doesn’t surprise me at all and I believe every word you say. I struggled with POTS for a decade before anyone took me seriously enough to investigate it and I had to fight tooth and nail for it to be considered to be anything other than anxiety. I’ve found most doctors and cardiologists here either completely ignorant or downright dismissive of this condition and too frequently it gets shelved as anxiety or some other PC version of saying ‘female hysteria’. NHS is pretty decent when it comes to injuries or other emergencies but when it comes to chronic or rare illnesses then good luck trying to find any specialist to take your case on. When I asked the A&E dr for some IV saline when I was flareing badly and could barely stand without fainting he just laughed condescendingly and said ‘if you can still swallow you don’t need IV fluids’ and told the nurse to get me a cup of coffee instead. Sadly yes there is also a lot of arrogance and anti American sentiment among UK doctors too unfortunately, because they view working for a universal healthcare system as some kind of virtue signalling bragging right and as you said seem to erroneously believe that even esteemed American doctors are all money hungry quacks. I’m not surprised at all that he immediately shut down the idea of a dialogue with Dr Blitshteyn, again another combination of ignorance, arrogance and probably some subtle sexism too, sadly a lot of these male specialist doctors are narcissistic and have a not so subtle bias against female patients and specialists, even women who outrank them in terms of qualifications. I seriously envy the American posters who have so many great cardiologists and POTS specialists available at places like Vanderbilt and the Mayo clinic who know all about this condition and are well versed in it. I can count on one hand out of the hundreds of UK doctors I have talked to since 2011 who knew what POTS was. The only suggestion I can make to you is to self refer for a private consultation with a different cardiologist (usually costs between £150-200) preferably one who is familiar with dysautonomia and see if you have any better luck finding one you are compatible with because quite frankly your current one sounds like a uncaring patronising ****.

Jillmae, I find that any time my body is fighting an infection, or I start taking antibiotics, it can trigger a POTS flare, which is why I take a boatload of probiotics and cranberry juice and try to avoid antibiotics like the plague unless necessary. I also suspect Candida plays a part too. Have you taken any antibiotics recently? I got palpitations and heavy sweating after taking just one dose of trimethroprim, made my gastritis flare up too. And it’s considered one of the more being antibiotics too.

Oof here we go again. Like I said I absolutely dread October and November. The last week have been having a flare with worse tachy and sweating profusely, but I can’t seem to sleep and it’s making my symptoms worse. Finally got 9 hours sleep yesterday and my heart rate finally went under 100. It’s been sitting at 130 at rest since Monday. Did you have any colds or flus recently? Have you had a UTI test?

Its so funny you mentioned this, I’ve been getting ectopics for years (the pause then big THUMP types, which I don’t pay any mind to anymore as I’ve been having those for a decade) However on Tuesday while doing some crunches in bed I suddenly got a run of fluttery heartbeats that lasted about 10 seconds and scared the absolute crap out of me. Got an ekg an hour or so later and nothing showed up. I suspect I may have vasovagal syndrome too. I definitely notice my ectopics are way worse when I’m doing something that stimulated the vagus nerve. Which isn’t hard as I have a hiatal hernia that constantly tickles my diaphragm and vagus nerve. Whether it’s a heavy meal, spicy food, sitting or laying in a position that puts lots of pressure on my diaphragm, tensing or clenching my stomach when nervous; going to the bathroom etc. And as I was doing crunches with pressure on my stomach and vagus nerve I think that’s why I got that weird flutter. Nothing helps except completely relaxing my stomach muscles and trying not to think about them! They’re also particularly bad when I haven’t slept or during my period. Basically anything that makes you relax will soothe your vagus nerve and help stop it tickling your heart. Adrenaline rushes will stimulate it and make the ectopics worse. It’s great news that your heart is structurally normal and your cardiologist isn’t worried. However I know how scary these ectopic can be. Can I ask if your NSVT or trigimeny makes you symptomatic and if you can feel these runs at the time? Are they like a row of the typical skip-then-BOOM beats? Do they feel like a row of fast hard machine gun type beats? Or are they a light fluttery sensation?

Hey all, last weekend I developed severe body aches and a mild pain in my ovary area that got worse when peeing so dr assumed a mild UTI. Took trimethoprim but after just one dose i started getting more ectopic beats so dr told me to stop. No more pain down there but for the last week since I have been flareing badly. Had some chest pain on Monday and went to hospital. They gave me an ekg and a bag of fluid then sent me home. Started getting some weird fluttery heart beats and started getting concerned after reading about ventricular tachycardia so went to the Hospital again. They did another EKg and examined me and sent me home again with advice to follow up with cardiologist. Thankfully haven’t experienced the scary flutters again but still having ectopic beats and dizziness and tachycardia is worse over the past few days, can’t sleep, also been sweating quite heavily with mild exertion and feeling hot all the time but no fever. I was a little disappointed they didn’t take troponins At the er to check for heart muscle damage just in case. I actually asked my cardiologist today if he would take bloods and check my troponin and stuff but he said he doesn’t think it’s necessary and wants me in for a holter and echo next week instead. I already had an echo in 2018 so not sure why. I’m still quite concerned over the chest pain on Monday and funny 10 seconds of fluttering on the Tuesday. Had another ekg yesterday and again it’s normal. Asked the dr about myocarditis but he said if someone has that it shows up on their ecg. I want to believe this is just another relatively harmless pots flare but something is making me uneasy about the pain and palpitations coinciding like that. I went to a and e twice in 48 hours with the same thing, I think in America if you do this they have to admit you but they don’t follow that protocol here in UK. I actually asked hospital to keep me in for observation but dr refused and discharged me despite me telling him I don’t feel safe or reassured going home, I pleaded for him to do bloods or an echo or cardiac MRI or just anything to check my heart is still structurally normal so I can forget about these palpitations and not worry, he said he saw no reason to, he seemed pissed off with me and thought bloods and further testing was unnecessary because of my previous emergency room visits for similar pots stuff and young age I guess. My anxiety goes through the roof during these flares and as soon as you tell the doctor that they put EVERYTHING down to anxiety and being a hysterical silly woman. Still feeling scared, symptomatic and tachy 😕

@PistolInteresting, I’ve been reading a few studies about this and it says T wave inversions are common in CFS and POTS people especially when standing due to autonomic stimulation, it seems any kind of strain whether hyperventilating or standing too quickly can bring it on. I know some people always have T wave inversions but as far as I know this is the first time T waves have shown up on my ECGs and I am symptomatic with pain so I’m still a little worried about something like myocarditis. @SushiA great idea and I would love one of those machines but I’m penniless at the moment! @MTRJ75Did this only happen once, and did the doctor seem concerned at the time, were you offered a holter, stress test or echo or any follow up tests afterwards? @MikeOThanks Mike I’m really hoping this is just a nothingburger.

October is always the worst month for me in terms of POTS flares and symptoms. I believe it’s the rapid weather change, less sunlight and later morning which affects my circadian rhythm, and all kinds of nasty viruses going around. My depression and anxiety always gets worse in fall too. The absolute worst time for me was October 2018. I thought I was going to die. I had a heart rate of 180 that wouldn’t come down for 3 days even when reclining, got kept in hospital and had to go all kinds of nasty invasive tests and scans. I believe it was triggered by a stomach virus. Even a mild cold or cough can really set me off into a spiral. I have to be very vigilant about wearing a mask in public and making sure I use a harsh hand sanitizer that kills non enveloped viruses like norovirus as well as regular enveloped viruses that are easily killed with alcohol. Any kind of immune response can really throw my autonomic system out of whack. The sweating definitely sounds related to autonomic overstimulation. I get chills when my vague nerve is irritated or I am anxious, like full body shaking, and have had sweats too. The only upside is that my blood pools a little less during cold weather and I don’t constantly feel like I’m going to pass out from heat exhaustion.

Hi all. I had a particularly bad case of jaw and shoulder and left arm pain last night so decided to call an ambulance. Upon my initial ECG in the ambulance, one paramedic remarked to the other that it looked like I had some T wave inversion. The other paramedic seemed very dismissive of it and said it’s common in adolescent females (im 30 lol -_-) and he said it could be the fact I was shaking quite a lot so they did another one which was apparently much better with less noise and said it looked normal. Went to A&E, had another ECG, apparently this was normal too and the doctor was totally unconcerned when I told him about the T wave thing in the ambulance. No bloods or labs were taken and he said he was happy with my vitals and said I could go home. In fact he took longer lecturing me about calling an ambulance than telling me whether my ECG was okay or not. No follow up offered. i dont feel reassured without the labs and because I’ve had bloods tested so often they usually refuse to do it again (NHS). Apparently my previous ECGs have always been normal but this new transient change has got me very anxious. I really don’t know if it was just a machine error or legit but it seems T wave inversions can stem from completely benign things (like eating too much sugar, being very fit, breathing in/out too hard, hyperventilating) or more serious things like MIs, myocarditis etc. I have no idea what to make of this and can’t seem to relax. I recall a few years ago one of those ECG machine algorithms and paramedic diagnosed me with atrial fibrillation which turned out to be nonsense and was a simple error from background ekg noise. I’m really hoping this was just a false reading too.....

Was having lots of PVCs and dizziness. EMTs came and checked me over. Said all my vitals were fine and my ECG was good. When I was watching the screen, I noticed the pulse oximeter that was counting my heart rate suddenly flipped from 110 bpm to 0 bpm, then after a second or two, went back to 110. I forgot to mention this to the paramedic. The doctor at the hospital said my ecg was fine. My anxiety is acting up and I just want to know why the oximeter said 0bpm. Asystole? Machine error? I never fainted, but i might have been having a PVC. So I don’t know if maybe the pause and lack of perfusion was counted briefly as zero bpm. I have researched these things though and it seems unlikely. The nurse told me these things are finicky and if it had really measured zero bpm I would have been on the floor. I have a pulse oximeter at home and sometimes it will say — or error, but never actually 0, as if it’s really counting 0.

Oh and one more thing - my blood pressure has been pretty high lately, like 155/90. Could the higher blood pressure be decreasing my heart rate?