Breathlessness follow up

[Murphysmum]

Thank you to everyone who replied to my previous post, it was a whopper!

So, I reduced my dose of T3 last weekend but clearly dropped it too much, as I spent the tail end of the week and this weekend feeling lousy. The breathlessness did seem a little improved when I did do anything though, so maybe on the right path.

My iron panel came back fine, which is kind of disappointing if I’m honest! Ferritin was slightly lower than I’d have liked but everything else is ok - I will supplement a bit to make them all nearer the top of the range rather than the middle though.

Today though, wow!! So I quite regularly have skipped beats or palpitations, especially around certain times of the month, and especially if my T3 levels are on the low side. Now they clearly have been lower the last few days but I had increased part way again and initially today felt better. This afternoon though has been like one long, permanent palpitation. I feel like I can’t have a long breath out or my heart will stop, even though I have my finger on my pulse in my neck and it’s beating away ok.

I feel awful and I’ve even googled heart attack symptoms as I’ve never felt like this for so long. My head feels like it might explode with a constant pressure going on. Again, I’ve had this before but it normally passes and it’s always an under medicated thing.

I’m sitting in the car waiting on my son finishing a class about 50 miles away from home (don’t ask!) and I’m quite seriously tempted to go to A&E when I get him home!

Anyone want to offer any advice or tell me they have this happen and it’ll pass? I’m certain it’s another “off day” but man, it’s never been like this before 🤦🏼‍♀️

[tattybogle]

just trying to work out dose changes ? ... you were on 60 T3 ...you say you lowered it a bit and did feel bit better , and then put it part way back up a few days ago , and now this happens ? have i got that right , or have i missed something ?

what did you lower dose to , and what did you increase dose back to ?

perhaps lower it again and see if problem improves again... and please don't go in the fast lane on the way home .. or we'll all worry about you . xx

( Kid's eh! .. iv'e just swapped chauffeuring daughter around for a year ( driving tests kept being cancelled) for worrying about her driving on the motorway without me .. not sure which is worse )

[radd]

Murphysmum,

Just rereading previous post & you state ‘FT3 at that point was 5.5. (Range 3.1-6.8pmol/L)’ when medicating 60mcg T3.

I still think we should have expected it to be higher in range on that dose and indicates excess is bound to SHBG which increases with high levels of T3.

I mentioned it before, have you tried milk thistle or any other liver- clearing sups?

[Murphysmum in reply to radd]

Yes you did, thanks. I did actually go to order new milk thistle last week but ended up with some NAC which I’ve been going to try for a while. It appears to me that maybe they’d overlap a bit, so I decided to try that alone first? Feel free to tell me otherwise though 😊

[london81]

have you had sex hormones tested? is your oestrogen low?i had palpitations at very low free t4 but since i increased my ndt it went away ( waiting on the 24hr ecg as i mentioned earlier)

what about your adrenals?

[Murphysmum in reply to london81]

My hormones are both in range (or were, haven’t tested for a wee while) but I do suffer from oestrogen dominance and my progesterone is a little low. So kind of the opposite really! Adrenals are good 👍🏻

[london81 in reply to Murphysmum]

it’s hard to keep up with it all isn’t it i hope you find some answers if you are stressed your cortisol could be impacted sporadically ?

have u considered a heart rate monitor watch to see how your heart rate is and sleep, across the month/a longer period?

i know that my hormone tests showed oestrogen dominance, and when i took progesterone cream i didn’t feel better, but also that some of my symptoms could be perceived as oestrogen deficiency ( gynae, weight gain, rages etc)

i’m doing my hormone day 3 test again this month so i’ll see if anything shows.

good luck and keep us updated

[J675]

Has the brand levo that you're taking changed in the past few weeks, either with or without your knowledge? I'm asking because I felt very similar last week with increasingly distressing palpitations, chest pains, unable to breathe and so on. It culminated with me feeling so bad that I thought that I was going to pass out (or die, I'm embarrassed to admit) and called 999 for an ambulance.

It turned out that I wasn't dying (!) and I was just having a super massive panic attack brought on by a very bad reaction to my usual Actavis having been changed to Accord without my noticing. I stopped the Accord immediately and all of my symptoms disappeared within the week. So it might be worth checking if your own levo brand has changed and seeing if that might be affecting you.

[Murphysmum in reply to J675]

Thank you for this. It’s very scary isn’t it? This was exactly what happened to me when I had my “crash” as I call it and following ill health that lead me to this forum.

It’s very worthwhile identifying what brands work for you and making sure it’s noted with your pharmacy. I’m T3 only now so this event wasn’t related to that but it’s very useful advice and my pharmacy know to only give me certain brands. Makes life a lot easier when you can almost rule out any discrepancy with your meds - you just need to work out what else is wrong after that! 🤦🏼‍♀️

[SlowDragon Administrator]

Personally I get irregular heart rate when T3 dose is too HIGH…..but that isn’t necessarily reflected in my Ft3 results

Recently bought an Apple Watch that does ECG (clever bit of kit!)

I never have hyperthyroid type symptoms if over medicated …..in fact the reverse.

[Murphysmum in reply to SlowDragon]

Thanks SlowDragon . I agree. I find it quite hard to tell over and under apart. The only thing I have found that indicates I’m a bit over is my eyes - I struggle to focus and it’s not helped by glasses. Very odd but only happens when I have a little too much!

Regards yesterday’s episode I think I’ve sussed it radd , london81 and tattybogle .

I’ve got some new B complex vits and (as I’m certain I’ve done before) I took two after my lunch. After having a wee snack while son did his thing, I started to feel better and realised that what I felt was that horrid “too many vitamins” feeling. Quite why it induced the palpitations I don’t know - maybe them continuing was in fact me panicking a bit and hyper focussing on it. The box says I can take up to three and I normally take two for a few days to give a bit of an initial boost so no idea what happened. Maybe combined with the heat and the fact I was just beginning to increase my T3 level again was why. Who knows!!

Better today though, onwards 💪🏻 Honestly, never a dull moment with this disease huh?

[tattybogle in reply to Murphysmum]

Yes maybe your body was just saying " really? ..... you want me drive you where! , on a hot day.... while i'm trying to figure what on earth you're trying to do with MY T3 levels ?... i'd feel much happier sitting under a shady tree with a tall glass and some ice cubes..... ah ha! I know how to make you lie under a tree... i'll make you think you're having a heart attack...!

So i think u should spend the next 2 days sitting under a tree while son brings things in a long glass .... just to be on the safe side.

[Murphysmum in reply to SlowDragon]

Ooh, and yes I LOVE my Apple Watch too SlowDragon - isn’t it clever?

[Zebra5 in reply to SlowDragon]

Hi SlowDragon I wondered if you could let me know what version of Apple Watch you have gone for and whether you are finding it easy to use for ECGs. I have never had one but am thinking about it. As I am one of the 'suppressed TSH' people, I am always being warned about atrial fibrillation. Does the Apple Watch pick up palpitations and so on, and how do you know what is a palpitation, or racing, for example, and what is atrial fibrillation? Many thanks for your help

[SlowDragon Administrator in reply to Zebra5]

Apple Watch 6 can do ECG

When experiencing “palpitations” you sit still, select ECG option and it records 30 seconds. You can then keep these recordings on phone indefinitely and also email them to yourself or medic as pdf

In my case never a fast heartbeat, always very slow, but more a “heavy” or irregular beat

I recently experimented with increasing T3 from 20mcg to 25mcg. Initially dose increase seemed better, but after 6-7 weeks, on less busy days I was getting very irregular heart beat, distinct loss of muscle in upper arms and very sharp pain in shoulders (rotor-cuff?)

Ft3 was NOT above top of range

Reducing T3 back to 20mcg…..(10mcg 7am, 5mcg at 3pm and 5mcg at 11pm) saw irregular heartbeat episodes reduce. Stayed at that dose for several weeks

About 3 weeks ago I reduced T3 to 15mcg (3 x 5mcg) irregular heartbeat stopped completely. Shoulders improving

I also take 112.5mcg levothyroxine (split as 100mcg at bedtime and 12.5mcg at 5am)

I expect to increase levothyroxine back to 125mcg after next test, or possibly 125mcg and 112.5mcg alternate days

I have always found I need very fine dose adjustment

Example of ECG below showing irregular beat

ECG

[Zebra5 in reply to SlowDragon]

Hi SlowDragon Thanks for your explanation and the ECG example. I find I need very fine dose adjustment too - it is difficult to get it right (but hopefully not impossible). It is very interesting and good that your irregular heart beat has returned to normal on the adjustment of your T3. Could I ask what prompted you to experiment and raise your T3 to 25mcg from 20mcg - did you have other symptoms you were looking to reduce? I take T4 and (self-sourced) T3 and am working on different amounts but I think it will be a while yet before I get close to where I would like to be. I now have swollen feet (worse now it is hot weather but started before the sunshine). Another new symptom. Thanks again

[SlowDragon Administrator in reply to Zebra5]

I had been particularly busy in early spring ….very very painful legs/bones after busy days

But possibly also vaccination upset levels slightly (who knows)

But I now think symptoms were perhaps more likely due to T3 needing reduction…..I find it’s easy to miss-read over medicated as under medicated

seems common that many people find they can reduce T3 slightly after being on it few years ….plus getting older!

I had been on 20mcg since 2017 (prescribed by NHS)

Always split as 3 doses roughly 8 hours apart

[Zebra5 in reply to SlowDragon]

Thanks for explaining. I do too (under and over medication). It's a lifetime of hormone replacement and a lifetime of learning.

[Murphysmum in reply to SlowDragon]

I would completely agree with this. Apart from at the very start of my T3 experience, I find that almost every symptom is the same with over and under medicating.I’ve just ordered another blood test. Like you say, so often the symptoms are from being slightly “off” one way or another.

I’ve had so many months of being well…. Hate when it suddenly goes off!

[Zebra5]

Hi Murphysmum I am sorry to hear that you having a worrying time and that you feel so bad. I do hope you got back home OK and that your symptoms are relieving. Let us know how you are getting on. I hate it when my heart starts beating hard or have palpitations - or when other strange things arise - it is such a worry when you are hypothryoid and trying to get the level of thyroid hormone as best as possible (and no, I haven't managed that yet). On the topic of hearts, I am going to reply to SlowDragon and ask about the Apple Watch ECG thing.

[Murphysmum in reply to Zebra5]

The Apple Watch thing is fab. Really useful for setting your mind at ease. I’ve had mine a while now too and actually what I use it most for is monitoring my heart rate at night.

Despite being on T3 only now and feeling well on it (despite the events of the last week!), I still have a low heart rate. Normal for me is in the 60s when just living about, and when sitting it’ll often be in the 40s. I have the watch set to alert me if it drops below 42, which happens sometimes at night.

The ECG thing is great to check regularly. It can’t detect a heart attack and tells you this, but it’s great for routinely keeping an eye on. Personally I find I miss any skipped beats though - by the time I look it up it’s invariably passed which is dead annoying!

[Zebra5 in reply to Murphysmum]

Thanks for the info. That's really helpful. I am hoping it will be useful to convince an over-zealous endo that I am not 'hyper'/overtreated 🙄

[tinkerbell22]

Have you tried potassium rich foods and drinks? I used to get palpitations, skipped beats a lot and found my potassium was low in comparison to salt and calcium in a hair mineral analysis test I did. This was such amazing info for me! Dehydration can cause potassium to be lower in comparison to salt, and that can cause these heart symptoms. I also found b12 lowers potassium so when I take that or eat b12 foods I must also keep my potassium up with food and drink so as to not get heart symptoms. Just adding some potassium foods and drinks stopped my heart symptoms.

I also get these symptoms with T3 which is annoying as I feel I need it. But I can't seem to take it at all right now.

So try something like a glass of orange juice, a banana, some cooked spinach (not raw!), a bowl of carrots, etc, to see if these potassium foods stop your symptoms for now.

Staying hydrated is also key but not to the point of losing loads of fluids as that also causes low potassium.

Ps a blood test for potassium isn't always helpful as you can be in range but low for you, not optimum.

Hope this helps