I read here often, but haven't posted on the thyroid board. I am based in the US and was diagnosed with Hashi's in 2014. Been on compounded T4/T3 since. I apologize for the length of this, but I have a long history.
I actually thought Hashi's had been confirmed by antibody testing previously, but looking at old results, the thyroid peroxidase and thyroglobulin antibodies were normal, but plain thyroglobulin was elevated at 120. Don't have the units or ref ranges on that as it doesn't show on my online med recs.
This past January, I began having nighttime runs of tachycardia - approximately 150-160 beat per minute - that woke me up and landed me in the ER since I had no idea what was going on. The rhythm is always normal sinus rhythm, just fast. I've probably had these occur about 10 times now and have been to the ER a handful of times when I couldn't get them to slow down through vagal maneuvers.
No tachy during the day, but do have palps, presyncope, lightheadedness, etc.
Due to my history of Hashi's, the ER usually runs a thyroid panel because they think I may be going hyperthyroid. Of course, they only test TSH and Free T4 during these instances. For the most part, FT4 has been normal during the ER visit, but TSH is always elevated (I'll list labs below).
Family doc sent me to a cardiologist/electrophysiologist (EP) who diagnosed me with autonomic dysfunction/blood pressure dysregulation. He has been rather vague so far and just says that my body is relying on adrenaline to maintain my BP during the day and then is all kind of dumps out at night, causing these episodes. The EP has me on increased fluids/salt and wearing compression stockings and taking midodrine.
I just had another bad episode the other night that I couldn't get to abort on my own and ended up in the ER. TSH was the highest it's ever been, even before I was diagnosed. Recently treated for low vit D and B12, both of which are improving. Family doc thinks we should raise my thyroid meds, but I'm hesitant just because my FT4 and FT3 generally look okay.
Anyone else have nighttime tachycardia and elevated TSH? I feel like something is going on with my thyroid that may be causing/influencing all this? Advice?
TSH (range .30 - 3.80 uIU/mL)
Jan 2018 4.61 - first ER visit
Jul 2018 6.76 - most recent ER visit
TSH during follow-up visit with family doctor have been:
1.38 (Mar 2018)
2.42 (Apr 2018)
2.51 (Jun 2018 - about 10 days before most recent ER visit)
Free T3 (range 2.30 - 3.80 pg/mL)
Jan 2018 3.33
Mar 2018 3.22
Apr 2018 3.20
Jun 2018 3.24 (again 10 days before most recent ER visit)
Free T4 (range .80 - 1.80 ng/dL)
Jan 2018 1.32
Mar 2018 1.40
Apr 2018 1.25
Jun 2018 1.22
Jul 2018 1.22 (at ER)
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swebes
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In my experience heart rate and palpitations are symptoms of thyroid imbalance. The difficulty of course is that that may not be the only thing going on and it can be very frightening.
I never went to A&E as I always have suppressed tsh so I knew the outcome would be a reduction in dose and more illhealth, so I took a chance and never reported it.
I did used to reduce my dose if I got a lot of palpitations, but eventually found out that regular, if possible daily, exercise and if possible weight reduction helped. I’ve read on here that Levo causes palpitations but for me, it was sometimes the peak in dose that occurred following a dose of T3. I found that avoiding caffeine, alcohol, overeating, and overexertion helped. Good luck
Thank you for your input. I am on a pretty structured daily exercise regimen that is supposed to help the dysautonomia.
And I do try to avoid all those triggers the best I can as at this point, I have no idea what is triggering everything. I do think there is some room to move up in T3 and T4 so a small dose increase might be worthwhile.
We are testing my numbers again in a few weeks before making that call. The fluctuation from a mid 2s TSH to over 4, 5, and 6 just confuses me, although maybe it has always done this and we are only now catching it because I've had my thyroid labs tested more frequently due to the ER visits.
You don't state what you are taking as replacement thyroid hormones.
I had very similar to you and was in an ambulance more often than I wanted to. Palps worse during night - and any time during day, no matter where I was or doing . I had umpteen ECGs and overnight recorders etc.
For me, the cause was levothyroxine (synthroid) and the cardilogist was thinking of putting (don't remember actual name) in heart to record but I haven't seen him since, nor have I had palpitations since switching to T3 alone.
Some might do better on NDT (Armour etc) as it is not synthetic but made from animals' glands.
Levothyroxine is synthetic T4 and has to convert to T3. Rarely is T3 tested.
I'd copy and paste your history into your Profile so that members, if you post in future don't need to ask too many questions.
I am not stating that liothyronine suits everyone but levothyroxine is T4 only and synthetic and has to convert to T3. Maybe some people's bodies don't like synthetic.
You are on a POTS treatment protocol. I thought initially my issues were thyroid related but they were dysautonomia and POTS. I take NDT and although exceptionally cautious with times and doses I actually needed to raise my meds.
I agree with Shaws as more info needed re your meds. Adrenaline surges over night are a common feature for us.
Hi cwill. I'm having a hard time accepting the dysautonomia diagnosis because there wasn't much testing done other than him checking my pulse during a quick bedside tilt table test and a few labs.
I know that some specialists are shying away from doing all the in-depth testing now, but I feel like it would be helpful in confirming the hypovolemia and excessive adrenaline that he suspects. I am going to Cleveland Clinic in November for a second opinion.
He suspects that these are adrenaline surges at night, but has suggested that I take a dose of diltiazem if I can't get it to stop myself. If it's due to adrenaline, seems like a selective alpha blocker would make more sense - a line of reasoning my family doctor agrees with.
When my body is having these crazy surges, would it make sense that the pituitary gland could be trying to signal that I need more hormone (by raising TSH) because it thinks I'm working out incredibly hard...or fighting off a lion
Could adrenaline push the heart rate that high - 150s and 160s?
I think there is a link between. TRH released by hypothalamus in order to stimulate TSH release by pituitary, and palpitations. TRH may cause palpitations?? Sorry I don’t keep record of what I’ve read. Also, it takes a long time following arriving at correct dose for all of the hormones to align, so I’d avoid any unnecessary changes in dose if you can.
Yes! Family doc wanted to increase my dose and I said I wanted a full thyroid panel done before doing so as the ER only looked at TSH and FT4. I'm curious to see what FT3 looks like. I'm redoing those labs in another 10 days.
Interestingly, family doctor ran some pituitary labs in case something wonky is going on there like a pituitary adenoma. They're not all back yet but cortisol and prolactin are both elevated. Not sure what that means so far.
I’m still getting to grips with all this as my decline was swift and my symptoms are now so severe I can’t sit. I was having dreadful nights with surges of heat and high HR that made sleep near impossible, but due to the disconnect with me and these symptoms I couldn’t sleep even during the day when exhausted.
Thankfully that settled when I fully adapted to 4 light meals a day, plenty of salt and at least 3 litres of drinks a day. I think I also had become so frazzled after 5 months of this that something had to give.
Symptoms are better settled overnight, bar heat intolerance, and I have raised my NDT dose with some success I think. I seem to be better settled above a certain dose but when everything got so much worse I was very hesitant to increase. Difficult to do though as I am having all the tests with a cardiologist at a specialist centre and obviously I don’t know how much a suppressed TSH is going to worry them and if they are used to seeing FT3 readings. But I am still working through the tests and then have to wait to see the consultant so it’s only DIY available here.
Other forum members suggest cold packs, cooling towels etc on the neck and cold water but no idea if they are symptomatic control or significantly effect the underlying systems. Certainly confusing.
Sorry to hear that you went through such a rough patch. I feel like most doctors underestimate the impact of POTS and dysautonomia in general.
I had an appt with the EP'S nurse practitioner yesterday and she made the comment that I was young and healthy and didn't have anything to worry about when I get the fast heart rates. I certainly don't feel young and healthy!
I'd really like to dig to find the underlying cause of it all.
POTS is seriously disabling and very common but I think it falls into he ‘fainting young women’ category, who must be anxious and really are not ill. On my forums we are quickly dismissed with doctors insistence that despite readings that are far from normal we have absolutely nothing wrong. Rather an ableist viewpoint that you would not expect from healthcare. Here they also dismiss anyone older as it is ‘an issue of the young’ so they really are trying hard to deny its existence.
Widening access to psychological services is largely responsible as they are pushing Medically Unexplained Symptoms as very common and resulting in denied services to the patient. Further testing encourages our ‘false beleifs’ so listening and real health care stops. Patients are simply offered CBT for diverse symptoms such as dizziness, IBS and seizures. No doubt the US has fallen for the theory although they are a bit more careful in applying the no medical care rule?
I don’t know incidence rates for dysautonomia and POTS but anything that is seen as predominantly effecting women is poorly researched, subject to medic disbelief, and poorly served by health care. I appear to be the first all of my health care professionals have met, very tiring.
Hi so I thought I'd have a look at your posts and we are very similar..highish ft4..
Don't get any vagal stimulation as this won't work for us..I was told to crouch..bending both knees up to the chest and wrapping your arms around them..I went all funny last night and it actually helped!
Yep...my mother who's suffers with svt and af...yep..sure...but cardiology told me never to do it with this...and just do the other thing..he wasn't impressed when I told him a and e were the ones telling me to do it.
Hmm, there doesn't seem to be a consensus on anything with this does there?! My cardio/EP suggested I try a vagal maneuver with the tachy happens (mine is only at night) and it's actually worked for me all but one time. From EKGs at the time, I know I've been in sinus rhythm. EP told me it was worth a try to get it to slow down.
Ye I mean I've supposedly been in sinus tachycardia/ arrhythmia...but I'm sure svt was mentioned...I've got weird ECG changes, but after reading a book, it says you can get all sorts of ECG changes..including st t changes, inverted t waves..all of which I have..I'm hoping that once I get my thyroxin sorted, it'll be ok.
But ye, if it works for you, do it. Tbh. Not completely sure my BP drops..it seems to go up along with my pulse..which is like ye..POTS...but..there's no pattern ..it goes up, it goes down...I don't even know any more. I'm at GP on Mon, and I'll be discussing possible adrenal fatigue...
The very first time the crazy heart rate thing happened, I ended up in the back of an ambulance. When they ran the EKG, they said something about a T wave abnormality, but then said that can happen from stress or just from being in the back of an ambulance (again, the stress or something?). No docs have even been concerned with it and it's never showed up again.
Have you worn a 30-day heart monitor? Mine only showed sinus tachy during the episodes.
Nah nothing to worry about..it can be dodgy, but it's probably because of ya thyroid. Only had a 24hr (battery's ran out! More like 16hr) monitor which showed tachycardia, then I was on cardiac ward for over week, I went tachy and all funny after eating, but because it was sinus no one cared.. discharged me even though I kept feeling faint! Ye I've had to call an ambulance a few times...very embarrassing since I do a lot of work down in a and e ahaha.
I'm due to have a tilt test before my wedding and a 3 week spider flash after.
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Blood Results - (after rubbish GP visit last week)
Hashimoto's with low TSH, RLS worsening
Why would my TSH remain out of range if my T4 and T3 is dropping after meds increase? Please can you advise?
T3 taken away, looking for a new source please :)
Dose changes advice please 
