I've posted on here a few times before, about how my meds weren't working for some of my most stubborn symptoms. I've been on Armour for 6 months now and my bloods are good and stable, and some of my symptoms have drastically improved (for example flu like symptoms, muscle aches, hair loss, depression)
But some have stuck around and even got worse (palpitations, shortness of breath, brain fog, sudden sleepiness, dizziness, stomach issues, difficulty being upright)
...turns out I have a form of dysautonomia called POTS. Triggered by major surgery last year. Diagnosed by a cardiologist with a specialism in this area. I wasn't aware POTS could cause many of the symptoms I suffer with. They can be so similar to thyroid symptoms. But instead of not having enough thyroid hormone, it's because I don't have enough blood flow to my brain!
Medication and lifestyle changes (massive increase in fluids & salt, wearing compression stockings) are making a difference, so that's how I know it's not my thyroid doing this.
Just wanted to throw this out there because I know we all focus heavily on the thyroid, but occasionally there may be something else going on. I finally feel like I understand what's going on in my body, and that niggling voice that was saying "hmm this doesn't seem right for Hashimoto's" was right.
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rosael56
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Yes I've seen some of the emerging evidence that POTS may be autoimmune. Very interesting. It was definitely triggered by surgery for me, I haven't felt the same since the day before my surgery. But perhaps as I already had Hashimoto's (and hypothyroidism - but undiagnosed as I was told "normal"), I was more prone to developing POTS as my body was already struggling at the time of surgery. There's so much still unknown about all this stuff!
Yes I believe it is. My doctors don't believe that can be causing POTS though.
Now that I know what's going on, I'm able to see the patterns. My symptoms are very obvious when I stand up and resolve when I'm sitting/laying down. I even experience the typical POTS blood pooling in my legs (peripheral acrocyanosis). And I meet every diagnostic criteria for it.
My symptoms are so variable. I will be feeling extremely woozy/sleepy, and then I'll lay down and it lifts. Or I'll be feeling fine and then eat a meal and suddenly feel dizzy. Or I'll eat a load of salt and feel better. It just doesn't fit for thyroid issues, but it does fit for POTS.
I was recently prescribed Ivabradine & Fludrocortisone, and by taking those, increasing my salt levels, and wearing compression garments under my clothes, meant I was able to function almost normally on my wedding day. It was amazing.
I also am now able to see I've had these symptoms since my surgery (May 2023). Way before I started Armour, or even Levo. The surgery changed something in my body. I had Hashimoto's undiagnosed at the time, and likely had had it for years, but this was a sudden change, and I'd always questioned why thyroid symptoms would suddenly appear overnight. But then I learned POTS can be triggered by surgery.
So I honestly don't think it has anything to do with my thyroid medication any more
What sort of symptoms do you get, if you don't mind me asking? Do you get the 30bpm jump when going from laying to standing?
I'm only asking because I haven't ruled out increasing my FT4 to see if it improves anything. Planning to ask my thyroid doctor about it next time I see her.
I'd be interested to know if you meet the diagnostic criteria for POTS when your dose is off. There's a very specific criteria you need to meet for diagnosis, and I wonder if the symptoms are caused by hypothyroidism whether those criteria would be met 🤔 would be very interesting if they are
Yeah I feel like they overlap a lot. I did just home POTS tests. My sodium is always borderline low, but aldosterone is too high, or my pulse can be super high even resting, but then goes up more when standing up.
Oh ok, you did the standing test? That's interesting. My pulse is always normal at rest (usually 60-65) and will jump up 30-60bpm while standing for the 10 mins and I'll really struggle with standing. As soon as I sit down again it returns to normal and all symptoms (shortness of breath, dizziness, blood pooling) resolve within minutes. I've noticed over the past few months that my tiredness is improving, I need less sleep than I did. So I know the Armour is doing something, but it isn't touching the POTS symptoms. Which is why I'm so wary of blaming this on thyroid.
Have those symptoms gone away for you then now you've adjusted dose? Are you sure you don't actually have POTS?
Also do you get a drop in blood pressure when standing, or is it only heart rate changes?
Yeah, I'm sure I don't have POTS as symptoms go away with dose changes. I also go to a cardiologist frequently, he said it's thyroid for me, nothing else. When my ft3 is high in range, I get POTS symptoms.
Fair enough, that makes sense. That makes me more sure mine is POTS, as these particular symptoms haven't changed on any dose or medication. Same before levo, same on levo, same on all doses of Armour. My FT3 has increased a lot on Armour, but these symptoms are the same as when it was lower.
Looking back I thought the symptoms I was getting were panic attacks. I think it was a month after surgery I was prescribed beta blockers for "panic attacks" which actually, looking back, were just my heart racing when I stood up.
But I'm still going to look into increasing my FT4 to see if it has any effect on anything. Maybe it will help - it's definitely possible some of my symptoms are still thyroid related. I'm still exhausted a lot, and who knows if that's POTS or thyroid.
Thank you for answering all my questions! I know I asked a lot lol. Appreciate it.
I was recently diagnosed with dysautonomia as well (a different one post viral dysregulation of the autonomic nervous system).
I read a little article on weighted blankets and dysautonomia and decided to give it a try. Finding it helpful when things start aggravating my symptoms (which is very easy to do).
Isn’t that just another bucket diagnosis though? Along the lines of medics saying, “We’ll give it a name for you but we have no idea what’s causing it.” Like fibromyalgia, CFS, ME…
Sort of. They do actually know what's biologically happening in the body though, unlike in ME/CFS or Fibromyalgia. POTS causes the body to not regulate the autonomic nervous system correctly, so there's reduced vasoconstriction, and therefore blood flow can't get to the brain effectively. In some people there's also too much increase in norepinephrine when standing up, or a drop in blood pressure.
Thankfully there is also treatment for it too.
But you're right, it is a "syndrome". There's emerging evidence that it's autoimmune, but no one really knows the exact cause. Thank you.
Dysautonomia is just an umbrella term, POTS is a form of dysautonomia. There are many forms of it. Sadly some people do get branded with a "general dysautonomia" diagnosis when they clearly have autonomic dysfunction but don't meet the criteria for a specific form, which I imagine is very frustrating.
It is horrible 😭 but I'm grateful there are treatments and actual tests for it, unlike conditions like ME/CFS. Being told you have something but there's no way to prove it and no treatments just sounds beyond horrific.
I am diagnosed with dysautonomia, along with hypothyroidism, diabetes and fibromyalgia… although I meet the criteria for PoTS my Falls consultant with a tilt test table insists it is not PoTS but postural hypotension: BP plummets to 60/40 with standing ( from hypertension at rest) and heart tries to compensate with fast pumping so HR rises. My dysautonomia is Long Covid related (4 1/2 years ago BP rose, and put on 5 hypertensives). My trouble now is I have been taken off some of the hypertensives by Falls expert ( I was fainting) and referred back to GP despite still having raised BP/HR problems, cardios don’t want anything to do with situation…the GP is insisting it’s the ‘overmedicated levo’ that is causing the high HR. The last 2 weeks dropped down to 75 levo ( from 100) with same T3, and at the same time reissued hypertensive indapamide…my BP hasn’t improve but HR now regularly 120-130 just walking to a room at home! All very complicated with no dr.having the knowledge or taking responsibility for support…hope your PoTS and hypothyroidism remain ‘discreet’ and monitored.
Oh I'm sorry to hear that, it sounds rough. I do know that if you have a drop in blood pressure then it's not POTS, it's Orthostatic Hypotension - which is just a different form of dysautonomia. It causes very similar symptoms to POTS and the treatment is essentially the same, so really it doesn't matter much about the actual name - it's just that the diagnostic criteria for POTS doesn't include drop in blood pressure.
Tricky though that your GP is not helping. GPs are so stuck on the idea of levo being too high causing all the issues. Is your HR high at rest? If it's normal at rest then that seems very unlikely it's due to Levo, as my thyroid doctor told me overmedication causes resting HR to be high.
My POTS has been quite delibilitating unfortunately, but now I'm learning to manage it it's improving.
I didn't get on with indapamide -- felt I would die from the constipation. Because my potassium had been low, I suggested getting tested for Conn's syndrome to my cardiologist. The results were inconclusive, or not evaluated as well as by someone with a specialistion, but I was put on amiloride, nevertheless, which has made the biggest difference to my hypertension. It's a bit more expensive than the run of the mill options, so I don't know whether a GP could prescribe it, or arrange a trial. My symptoms post C-19 weren't caught by the testing, so I too was discharged back to GP care.
Blood test on Thursday related to indapamide with BP in surgery…so hope something will drive GP to try something else ( bet it will be phone message via receptionist).
My heart rate was doing that too, going crazy high on basic activity. Or even higher moving and getting hot or after a bath. I'm currently on bisoprolol which is helping massively.
Currently on a long plan to reduce it if possible very slowly in hopes my autonomic nervous system finds it's way back to normal. Not feeling very confident on that but GP reassured me on a sensitive plan.
Bisoprolol was the first hypertensive the Falls consultant removed as she thought it had a play in the hypotension/ high HR. It also gave me very vivid highly claustrophobic nightmares, so liked that going!
Thank you so much for posting about this. Last autumn my son was diagnosed with autonomic dysfunction. He passed out a few times, leaving him extremely tired and unable to participate in his usual activities for about a week after each episode. His heart rate shot up during these episodes and he’s had blood pooling in hands and feet.
He was advised to take 4 teaspoons of salt a day to help him retain water and breathing exercises. He did this for a while then stopped. He has been ok since until we were on holiday last month and he nearly passed out again, ruining the last few days of his holiday. He was probably dehydrated and got too much son. He’s now returned to having salt and doing his breathing. Would you advise him to use compression garments too? He gets hot v easily. How much salt do you have a day? I’m a bit worried 4 teaspoons is not good for him in the long run.
I’m really pleased to hear that you got a diagnosis and now know what’s going on.
I'm sorry your son has this too! I was advised to have basically as much salt as possible. 6g a day minimum, but up to 10 would be fine. Apparently in people with POTS/dysautonomia, it's not harmful. I was also advised to drink a lot alongside the salt, otherwise it won't do anything. My cardiologist told me to drink 4 litres a day. I also drink electrolyte drinks which contain sodium, that can be easier than trying to eat salt.
Compression socks do help for me! I just bought some on Amazon in funky colours. They help reduce blood pooling in the legs, therefore keeping it higher in your body.
Well thank goodness you have been able to get to the root of this. I hope it helps.
And a big thank you too for re-posting and letting us know there is some sort of resolution in your case. Too often people disappear into the woodwork and we never know how it’s turned out for them, fearing the worst (all round) especially when others suffer similar and the info could be absolutely vital.
Hopefully you can now fully benefit from this discovery!
Thank you! It feels like such a relief to know what's going on. The symptoms have been so up and down and really didn't seem to fit for thyroid issues, so it was very confusing for a while. I couldn't shake the feeling that something else was wrong.
Hopefully I will improve in time with the right medications and lifestyle changes!
I am confused about this as I get POTS symptoms especially when taking significant doses of synthetic levothyroxine: getting very out of breath/gasping for air, dizzy from bending to standing, even bending to put clothes in washing machine, looking down to see something or even looking up for too long, going up just a few steps, get clumsy, drop stuff or trip over. I also struggle daily with terrible brain fog, tiredness, random feeling of malaise, difficulty concentrating, I also notice heart beating very loudly when exercising, feeling worse or even sick after eating and extreme sweating. All this is much better with working T3 but I am never 100%.
Have spontaneous severe allergic reactions and breathing problem and chronic angioedema and hives too. But the angioedema is so random is it is weird. Simply picking up something heavy, a sudden physical rush of activity (running for the bus), bending down suddenly, being hot or being cold, or not sleeping or sitting too long or being cramped or falling over can bring it on (I fell over a box in my passageway once and my face started swelling up and hives appeared immediately) along with eating any random thing (although high histamine food is a more consistent trigger) all indicative of some odd autonomic dysregulation. Or severe ongoing allergy.
So I went to see this silly expensive doctor to investigate for mastocytosis and as part of the investigation he said he had to rule out POTS/ dysautonomia (because these conditions can present with pseudo food intolerance and some of the other symptoms, and that is interesting) I had also been wondering about it. Also he said the chronic angioedema urticaria can be due to an autoimmune disease and so can dysautonomia. And so is mastocytosis!
Anyway, he performed the tilt test in that he told me to lie down and stand up.
Nothing bloody happened! Heartbeat was fine. Naturally my insistence that it isn't always so was disregarded.
Failing the tilt test put me back to square one. BUT I did notice that symptoms get worse past taking say 25mcg levo, especially levo on its own,and at the time of this appointment I wasn't taking any a few days prior.
I mean I'm now on a combi T4/T3 and still have random bad days, I really don't know. It's weird I can get days when I think I'm getting my life back followed by down times. Autoimmunity seems to present with added complications that just aren't considered. I have a fibromyalgia diagnosis that I've never been happy with as an explanation. Then cortisol is probably part of it. But I do believe if we are out of hormonal 'sync' as it were,then the autonomic nervous system is going to go awol.
On that point to throw further confusion into the mix, at the time of my fibromyalgia diagnosis I was given a phone number by my GP to call for a lady in Scotland (it might be worth noting that this GP insisted that Fibromyalgia and M.E. were the same condition, that was her private view) This lady had taken part in a German research trial and and learned a lot from close association with a dual German/English doctor who is now dead apparently (why are all the best ones dead?) who was investigating the brain/fibromyalgia connection. She seemed to know a lot and had doctors calling her for advice apparently.
She said the hypothalamus is chiefly involved and it affects the autonomic nervous system. Of course low thyroid hormone, low T3 affects functioning of the hypothalamus. On this point I also contacted Barbara Hoffman some years ago and she told me a lot of the ongoing symptoms of hypothyroidism and chronic fatigue/M.E. were chiefly down to the hypothalamus and pituitary but mainly the hypothalamus, and it needs good T3 levels and when deprived over time it affects its signalling (she put it better than this but I am paraphrasing,)
So it's really confusing because M.E. is purported by some to be a problem with the hypothalamus/CNS (others say mitochondria or virus, but then if it's a condition with similar symptoms the pathway could be multiple) and so is dysautonomia and so is fibromyalgia, and thyroid disease causes related symptoms. There appears to be overlap between them all. It's futher confusing when you add in autoimmunity of which doctors themselves do not know much.
I intend to go back to the doctor to request a heart checkup but it requires me being forthcoming about my thyroid meds and I'm not up to it atm.
I'm sorry you're going through it all because this all sucks, it may seem small but it affects your life so profoundly. I'm happy you've got something of an answer and at least have been taken seriously. It's horrible to be in the dark wondering if you're on enough hormone etc or is it something else?!
Doesn’t sound like proper tilt test table test, or even NASA test…I did the NASA test DIY at home but a BP cuff( even oximeter) was not sophisticated enough tech. to pick up my sudden huge hypotension drop ( 60/40). Even my local NHS ‘s NASA type test didn’t record it…so might be worth getting referred to genuine tilt test centre ( look up POTS Uk website they have a map showing clinics tho very out of date…of 4 i tried to contact only one replied/existed in NE). I also have fibromyalgia ( post septic shock acute pancreatitis)…so heavens knows what is happening in ‘big picture’ when not attempted to be diagnosed with one symptom at a time!
Alanna you might even get better testing on the NHS. I'm not sure how the land lies now since long covid and so many more people going down with POTS/dysautonomia but theres probably a better chance of getting a proper tilt test and other testing than going privately.
Do message me with who you saw as there are other doctors dotted around who might be better. Perhaps join a POTS group and get some pointers from there.
That is very frustrating that your heart didn't do anything for the tilt test. Have you tried performing an at home test? Lay down for 10 mins, see what your resting HR is. Then stand up and monitor your HR while standing still. If it jumps by 30bpm or more within the 10 mins, and stays that way, that is the diagnostic criteria for POTS. If it jumps but then goes back down, that is not POTS. Mine nearly always does the 30 jump. Occasionally late at night when I'm well hydrated it doesn't do it, but early in the day it jumps by 50-60. If I stay standing it just keeps climbing until I cant breathe.
The fact that your symptoms change depending what thyroid meds/dosage you're on does seem like it's more thyroid/hormonal related for you maybe? My symptoms don't change whatever medication or dosage I'm on.
I'm so sorry you're getting no answers though, very frustrating. Thank you, it does affect my life very badly but having answers feels like such a relief. Not knowing was dreadful so I know how you feel x
Thank you and sorry for replying so very late. I will try this and yes, I do think there's a strong possibility it's either underlying hormonal dysfunction related to thyroid, or my autoimmune condition making cortisol go deranged (which is hormonal again!) or heart related. Heart problems do run in one branch of the family. Anyway I will try this tomorrow when I have some quiet time. Thanks for taking the time to respond and sorry again!x
I also have pots and thyroid. I see an endocrinologist that my pots specialist works with. Pots makes medicating harder. When my thyroid numbers are good my pots is bad. When my thyroid numbers are very low my pots is good. Luckily my endocrinologist wants me to feel good and works with me. Good luck on navigating this
Glad the Armour worked some for you. I tried it and there wasn’t any difference I could tell. I also have fibromyalgia, a fatty liver, sleep apnea, and no spleen. Not sure exactly how much the last three may be involved but the fibromyalgia kicks my butt. Oh yeah, I have a ton of arthritis and imagine when I soon get some tests run my RF will show rheumatoid arthritis. I say this because my mother had it, along with her fibromyalgia.
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