Since stopping my adventure into T3 because of a fast pounding heart. Each night I am awakened by it. I am wondering if anyone has any first aid tips on how to deal with it. I think I must go to A&E but that is not a prospect I relish.
I saw a private endo to try and cut down on husbands anxiety but no reply other than instructions to stop T3.
This doesn't sound much fun 😕 Is it possible you have got yourself in a cycle of low T3 causing anxiety and panic attacks and the thought of taking T3 has the same effect?
The heart really needs a good level of T3 to run smoothly... not sure A & E is going to have a soothing effect and more likely cause post traumatic issues to play on your mind further 🙄
It does sounds like an adrenalin rush which my Mother outlaw suffers from and is often ringing the paramedics who are lovely but find nothing wrong and suggest its a panic attack and to practice belly breathing deep and slow and then a sweet cuppa and a book.
Found this chat which might help...🤗
healthunlocked.com/thyroidu...
Whilst it is very difficult to tell the difference between panic attacks and fast heart rate I am pretty certain this is not a panic attack - especially as they are lowering slightly in level each night, or I am not so shocked! This was a very common symptom for me about 45 years ago until it turned into a more angina like effect. Shortly after introducing levo (nearly two years ago) these angina pains have been almost non existent. Painful angina symptoms as opposed to just fast heart. The recent intervention of T3 especially not taken as I was told not fully understanding the need to use a split dose has got something to do with it. I think. humanbean or it could be you (I have read all the posts before I replied to anybody) guided me to an old post where RB10 describes the sceanario where this happens. T3 is especially needed between 2 am and 4 am. The timing is spot on.
So far my ‘first aid’ has helped a bit. Sitting up in bed. Making my abdominal muscles crunch as if defecating. Putting a hot water bottle over the abdominal muscles which are in spasm. Putting on the electric blanket after the initial ‘rush of heat’ becomes a deep deep cold. I remain wide awake until morning when I then get a couple of additional hours. I am just putting this in here in case it helps anyone suffering same in future - like the posts I have been referred to.
This pattern of wakefulness around these hours have been with me for many years. However it’s many years since I would have described them as a panic attack - although the symptoms are classic.
My thoughts are, I have irritated the whole process by wrongly taking only one small dose of T3 trying not to take too much. This I think because of T3’s workings, I have totally f..ked it. Another sobering thought after this carry on and should I have the nerve to have another go in about 8 weeks is - if this is how profoundly T3 works - how terrifying not to have access to it suddenly!!!
Eeyore100. I am worried and I did panic the first night until I realised “been there probably 100s of times before and collected umpteen T-shirts”! However I can’t thank you enough for getting back to me. I do go on but it’s been a comfort you replying with such kindness.
It's always good to put it out here and someone will connect, identify, shine some light and offer a myriad of solutions hopefully... that way we all benefit
I don't really know too much about panic attacks but isn't it often the effect of a sudden unnecessary adrenaline rush? So it could well be your heart is making a plea for T3 as we know you are running on low levels and you have given it a tantalizing taster?... Maybe a little before bed might be the solution, it does seem to aid sleep which seems hard to believe as it is such a pick me up but if your system is crying out for it maybe it'll settle thing down... 🤷♀️
It's all just trial and error as the Dr's don't have the answers and often cause more harm or upset by going in with other disruptive big guns or offer nothing🙄
Bean has added a lot of very sage advice 🤗
I admit I was feeling bereft. I have been trying to be such a good little soldier and it’s still not ‘happening’ for me. I do worry that I won’t get there. I have had a frank talk with my husband and that has helped set my mind at rest a bit too. It’s all hurting him as well.
I could very much agree with you about the adrenaline rush. That is what it feels like. If it’s shouting give me more T3, I was unable to translate that. Indeed I would not have been confident to supply it at just that moment. I would be worried I would make it worse! BUT if I am going to go on with this, I will wait six to eight weeks, take a blood test and armed with this experience and information, I will try again. Scary!
You know it’s kinda basic but wouldn’t it be great if when we are tackling this tweaking business that someone who ‘knows’ was right by our side, in the moment. If there was some sort of ‘drop in centre’ where this stuff was freely available in the flesh at just the moment of need. Maybe even a comfortable bed for overnight. Many people must be on their own tackling these frightening episodes. If I win the lottery, this is one of the first things I would do. Like this forum, provide a service the medics seem entirely unable to. Just think of the money it could save our NHS.
For the next six to eight weeks whilst I am waiting to stabilise my bloods, I was thinking what can I do? I never thought it would get to this point but I have seriously been thinking about hiring a wheelchair so I can go perhaps to a gallery or the cinema. It may sound melodramatic - I can walk- I just can’t for very long. I can’t stand for long. I couldn’t even conceive of getting out in this way before. The embarrassment etc. Can hardly believe I am thinking about doing something other than surviving.
Thanks again Eeyore100 for listening.
I think the fact that everyone reacts differently is what scares the Dr's, they surely see all to often that the bloods don't match the presenting patient and they all specialize in one field and we all know the endocrine system effects everything.... it may be why many do well with naturopaths as they understand it's a journey to balance the whole system not a quick fix, packet of pills and off you pop see you in 6 months after a generic BT.
An outing is a great idea, go have a try out at a garden centre or somewhere they provide them and see how much mayhem you can cause.... got to be worth a giggle 🤗
Entirely agree. I do not forgive medics for their lack of respect, understanding, knowledge and expertise. However I am less angry about it! How could I not be less angry with the support shown here?
AND yes I love the viewpoint about the mayhem. Made me laugh out loud. A wee taste of freedom though.
Get your kicks anyway you can 😁🛺
The T3 has a short half-life. It will be gone from your system well before a week is out. So you might want to give it 2 or 3 weeks for your body to settle back down but no need to wait for 6-8 weeks before you do a test after such a short experiment.
That would be brilliant but I definitely feel cautious now. That’s the worst effect of the meds that I have experienced; although the symptoms are not unknown to me, I have not experienced this for many years. SlowDragon has suggested my T4 needs to be higher before recommencing T3. I really think this is the way I will go. I think my ‘deadlines’ before Xmas were a bit tight I was so keen to get to the T3. I just wanted it all to happen but not fully unaware. A bit of denial. Crikey, I actually have a lot of respect for this process but ……. Damn! Thank you for your post. It’s helped me feel more hopeful again.
Making my abdominal muscles crunch as if defecating.
Sounds like you are stimulating your vagus nerve in some way. I know that people can do this in various ways but I know absolutely nothing about it or what benefits people get from it.
Yes it is about the vagus nerve. My abdominal muscles go into spasm, much like I think the heart is reacting at those times. Between the ‘defecating’ movement and the hot water bottle it somehow helps the spasm to release. Afterwards it feels like you have taken a blow to the abdomen. It takes hours to subside, affecting appetite etc. I have been known to take paracetamol at that point and miraculously that helps but only when the muscles have already relaxed.
Do you take magnesium? It can help muscles relax.
I used to have regular severe cramp in my legs, eyelid twitching and spasm, benign fasciculations (if you don't know what these are do a search for the phrase on Youtube).
This almost disappeared when I started taking magnesium supplements. Vitamin D helps too. So does potassium (although I wouldn't take potassium without testing).
I was so cross when I read it can also help with menstrual cramps - I wish I'd known when these were a massive problem for me.
I do take magnesium. I have taken it for a long time so it’s ‘benefits’ are now just an accepted part of my picture. In desperation I did not take it last night. Just in case it was that. Somehow. The potassium thing is a bit different. I have taken it in the past with strict fear warnings. It did not do anything noticeable. The work you did on your initial post was so gratefully received and so wonderfully tailored. Thank you it’s a wonderful reference document for me.
If you are interested in potassium you might like this link :
drmalcolmkendrick.org/2013/...
Personally I take potassium bicarbonate powder a few times a week. I take about a quarter of a teaspoon of it in orange juice along with magnesium citrate. I find both the magnesium and the potassium taste vile which is why I try to disguise the taste with the OJ.
OK humanbean. After reading that fab drmalcolmkendrick again - love his stuff on statins - I realise, I do take potassium in one of those group powders (including magnesium too) for constipation. I used to take them regularly but now use it less often, almost as a kind of measure of where my hormones might be. Very constipated = meds likely to be low. So then I have to take more! No problem in the short bursts of the duration of T3 I have to announce! Happy to say I eat lots of broccoli but cut back on spinach because I understood it interfered with uptake of thyroid hormones. I need to look more closely but he does not recommend a big dose. He covers all the bases with this. Does seem sensible. Where have all the scare stories come from about potassium?
humanbean I want to save that post you highlighted. The fear of hormones one. Can you explain how I can do that and have access to it? If you can’t explain maybe someone will see this and attempt to explain how to me. Thank you.
1) Go to this thread you want to save :
healthunlocked.com/thyroidu...
2) Then click on Save Post at the bottom of the very first post in the thread.
To find the threads you've saved in future if you want to look at them again, go to "My feed" which, on my PC, is at the top of my browser screen, or go to this link :
3) On the feed page you'll see an option for "Saved posts". Click on that then you'll see all the threads you've saved.
Aha! Managed to save it. Brilliant. It will save a fortune on printing and my dreadful executive functioning abilities will not need to be relied upon. I have checked it’s there on my feed. Thank you so much.
Hi arTisappleMy palpitations are bad when I am undermedicated. When I started taking t3 they lessened but haven't gone away. However I definitely feel they are better when I take a slightly higher dose on t3 at bedtime. I hate that feeling when you're in your bed and your heart is just not behaving. It's frightening! That makes it worse. I find deep breathing helps. There are apps you can get that help with the rhythm. That helps you think about something other than your heart! I have experimented with my dose and its definitely better for me if I take a larger dose at night. I think it helps with sleep as well. I hope you find something that helps you. Take care.
Thank you BiscuitBaby. I can’t tell you how important it is to read other people’s experiences of this thoroughly horrible lonely time in the middle of the night. I was thinking that this is the end of the road for me. I was getting very low very fast. I won’t be experimenting again for a bit but I will keep this in mind for the future. Thank you again. You take care too.
Try not to let yourself get too low. I know it's hard. I've been there. We all have, that's why this space exists. We are all different and you obviously havent found what works for you. I think you maybe still need to do some tweaking to your doses. What were your doses? Did you split them? I have read people splitting t4 into multiple doses during the day to help with tolerance. Some still do. I really hope you find what works and unfortunately it's slow progress. That's the frustrating bit. The medics out there give you your meagre dose of levo, pat you on the head and send you on your merry way. Life's not that simple. Take care.
I have been very uninventive with my dosing. In fact humanbean directed me to a set of posts for people ‘afraid of thyroid hormones’. You know what? I did not realise I was afraid. I thought I was being respectful but this last episode has taken me into ‘afraid’ but more a case of afraid of not getting to grips with this and getting them to help me. Same thing maybe I am splitting hairs! I have to agree with you. What the medics do just does not work and they certainly try to make you think it is their way or the Highway. Thumbs up for the forum again.
Absolutely agree with you. I don't know where I'd be had I not found the forum. I get the thing about being afraid and also respectful. But you know your body and how it works (or doesnt) It's maybe worth keeping your dose as is but change how you take it? That might help. It's amazing what can make a difference. There's lots of people couldn't take t3 at bedtime but I feel better when I take a larger dose then!!! There doesn't appear to be a one size fits all. Makes things more difficult though. Maybe start a symptoms diary so when you tweak something you have a reference when it works or doesn't. Hopefully you'll get there.
I think I will do something like this. But I am giving myself a bit of a reprieve for a few weeks. It’s all just too much at the moment. Thank you for everything you have said. A lot to think about.
1) Try changing the time that T3 is taken.
2) Cut the T3 into smaller doses without changing the total dose.
3) You could try splitting your Levo dose as well.
4) Ensure your basic nutrients are optimal, or as close to optimal as you can get them.
5) Ferritin is a measure of your iron stores. It is iron which is locked up tight so that pathogens can't get at it and use it to help themselves to reproduce. There is also serum iron, which is "free" iron which pathogens can get at. If ferritin is high in range it doesn't mean that iron is guaranteed to be high in range too. Ditto with both being low or mid-range. It is possible to have good levels of ferritin and very low (or high) levels of free iron, or vice-versa. Both ferritin and serum iron, ideally, would be at good levels to help tolerance of T3. Getting a full iron panel is a good idea.
I mention iron and ferritin levels because they can affect the rhythm and speed of the heart.
6) Low or high cortisol can severely affect tolerance of T3. A saliva test is a good idea.
Note that when people first start taking T3 there are several effects that might be noticed.
a) Heart speeds up soon after taking T3.
b) Heart returns to normal 20 - 60 minutes after heart speeds up.
c) When T3 in the blood has been "used up" or gone into the cells the heart can speed up again as an indication that more T3 is needed.
d) If people think T3 is dangerous (which it isn't) then this may add to the speeding up of the heart because they become anxious or panic.
e) Please read this link :
healthunlocked.com/thyroidu...
This is a smashing full reply. It covers so many eventualities.
Whilst many of the suggestions are enlightening (to say the least) I know I have a specific problem with my ferritin level. Last check it had dropped from 502 to 480 I think. I have been trying to eat less red meat to bring it down. However I understand now my paternal grandmother developed PA in her later years, so as ferritin levels don’t actually guarantee good iron levels, I think I will get this investigated more.
My heart rate definitely increased a bit in taking the T3. My pulse is normally pretty low. I was very happy that things were moving comfortably in the initial few days because I was getting some stuff done more easily. Dishwasher emptied etc. I was initially benefiting!
Your directions to the old post was informative in that someone RB10 , has come to a similar conclusion to myself of T3 being necessary at just the moment this thing starts to kick off during the night. AND I will have to check again for anything Ray Peat says in light of this. I did try to find reference to the Circadian Rythym but could not find anything specific enough (or did not understand it well enough) to put my mind at ease.
This is just the weirdest of illnesses. How would we survive without the support, care and knowledge provided on this forum? I was apprehensive to bring this up, not least because I have been a bit of an idiot. It has been distressing as well as embarrassing. So that’s now twice I have made this specific mistake. I am now going to give myself a six to eight week ‘space’, check my bloods and try again.
Thank you for everything you have provided.
Could it be something you’re eating/drinking in the hours before bed?
Alas, I can only rarely drink alcohol these days because that makes my heart race. But so do other things sometimes, including milk.
Honestly Jazzw I take as much care as I can about this specific issue. I don’t drink alcohol at all, for many years. I don’t use caffeine. No fizzy drinks with either pretend sugars or the real thing and I am particular about high carbs (sugar) because I know this can cause drops during the night. If I feel peckish I have something with protein and low carbs.
However I thank you for picking up my post. It’s reassuring that you are there wanting to help.
Personally, I think…..once this all settles you need to look at SLOWLY increasing levothyroxine next
As you’re currently not on high enough dose levothyroxine it’s incredibly difficult to add T3 …..because your body is desperate for it
You’re currently on 100mcg levothyroxine?
Which brand?
In 4-6 weeks…..once everything settled
Look at adding 25mcg (as 12.5mcg twice week) …..wait 6 weeks
Increase by another 25mcg per week (so now on 112.5mcg 4 days and 100mcg 3 days week)
Wait 6-8 weeks…..then retest thyroid levels
Meanwhile yes get full iron panel test done
But high ferritin levels relatively common after menopause
Over 60 years old Ferritin is normal up to 650
healthunlocked.com/thyroidu...
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
Yes SlowDragon I think you are correct about the levo. Obviously this is going to be a longer trek than I hoped BUT it must be done. I am resigned to the wait. I was horrendously ill on the 125 mcg. I still have the tablets, I will cut them up, when the time comes. AND I think you are correct “because your body is desperate for it”. This is exactly the kind of wisdom I need.
In 4-6 weeks I can try the first change - Yippee.
Ferritin - I am 70 - so the new range still applies to me. So probably no worries there after all but will pursue full iron panel.
Recent 100mcg of thyroxine is accord. Can’t remember previous but NOT accord.
Recent additional 25mcg WockHardt.
Soy free but not gluten free. Not dairy free either. I do keep both gluten and dairy to a minimum. They are not a huge part of my diet. If Medichecks or someone does a gluten test I will get that done too.
Thanks for all your help. I can see a bit of future again, so important.
No point testing for gluten or dairy….you just have to try it
It’s to do with Leaky Gut…..rather than intolerance
Gluten free does need to be strictly gluten free to be effective.
These days dairy free is getting easier and easier
So many great alternatives
Not a problem having “non milk” out at most cafes in U.K. (at least)
I am just contemplating my first trip abroad since going dairy last summer
I have never had problem getting Gluten Free aboard
Especially if take a card in language of country visiting
Yes the milk thing is no bother. In better days I used to make Raw Cheese. You know that phase when everything had to be raw. I loved it but up here in the cold north no restaurants like that survive. Everything is DIY. OK re: gluten. I will have another go at that. Save on testing.
SlowDragon, sorry to bother you again. It’s two weeks today since I took the last T3 (5mcg) after my pounding heart issues. That has all settled thankfully. I seem to be as well as can be expected in myself, whilst notably under medicated. However I am now left with very bad constipation. I have tried my usual ‘go to’ but nothing is shifting. My question is should I try another over the counter remedy or can I now increase my levo as you described above? Adding 12.5mcg twice per week for six weeks?
Suggest you start increasing levothyroxine
Meanwhile
Do you take magnesium
Calm vitality magnesium powder (max citrate) good for constipation
This is original unflavoured version
Lots different flavours available too
uk.iherb.com/pr/natural-vit...
Best taken at bedtime (or early evening if take levothyroxine at bedtime)
Must be 4 hours away from levothyroxine
Starting with teaspoon dissolved in warm water. Drink while still fizzy. Increase dose until get desired effect. Too much can cause diarrhoea
Thank you for getting back to me so quickly. Much appreciated. Ok I have this minute ordered it. Unfortunately won’t be delivered until 22nd earliest. Will have to try something over the counter in the mean time. Also increasing the levo as instructed.
you might get magnesium citrate in local health store
Aha. Ok. Thank you!
Re: increase in levo!! Same thing again, rapid pounding of heart. On night of second dose (three nights apart) another visit to A&E. I have not been able to get in touch before now, dealing with my disappointment and confidence shattered. Another couple of ‘rabbit holes’ appearing for me. I have to be monitored with a 72 hour (holster thingy). I did tell them again that I thought it was due in some way to my attempting to increase my thyroid meds and asked for all hormones to be checked. Duh! Apparently they are fine (TSH only). Huh. When asked why I was persisting with this, I replied “to try and get rid of my hypothyroid symptoms”. “Which ones are they?” “My muscles are making me an invalid.” “That would be an extremely rare presentation of hypothyroidism” says she. Even without benefit of the forum I have seen this in another hypothyroid I have come across myself - even worse than me and she is happy with her treatment! I have therefore done a bit more research myself. It’s in the literature and it sounds like it is considered rare but the references are there. It’s called pseudo myotonia. Anyway the other major issue was “Some people just can’t tolerate thyroid meds”. I just had no comeback for that one. If this is so, I am stuck at 100 mcg, with all my hypothyroid symptoms, some a bit better, some no better and worsening. Other than just leaving everything for a few months and undertaking the ‘rabbit hole’ stuff, this last almost throwaway comment has floored me. I see other people have dealt with ‘can’t tolerate thyroid meds’ on the forum and I kind of have not looked/denial of the possibility. I have always hoped my case would be simple. I realise I must also phone this private endo and finish off the cycle of the prescription of T3 which had to be stopped, to see if she has any advice.
Sabbatical from increasing medication but some words of hope for the future please SlowDragon?
Did you split levothyroxine dose or did you just take as single dose
Might be worth trying splitting dose levothyroxine
Which brand of levothyroxine are you taking
You may need small doses of propranolol (beta blocker) to tolerate dose increase….
Though if you have/had asthma propranolol can’t be prescribed
Are you taking magnesium supplement?
I did not split the levo dose. I think of myself as creative but I now realise I need to be told this stuff and to remember it. Thank you.
Accord (100) used to be Aristo changed at last prescription plus Wockhart (25).
I wonder if they will give me a beta blocker? I would prefer them not to know I am doing that to enable me to take more levo, in case they won’t prescribed it. Now you mention it I have seen this mentioned before on the forum. Always hoping my case will be simple. Aargh! No asthma and I may have been on it years ago.
I do take Bio Magnesium. A 200mg combination of M carbonate, M hydroxide and M acetate. Pharma Nord.
I have lost my confidence for the moment but I will do this when I next attempt it.
Thank you so much SlowDragon.
Also …..remind us ….are you on gluten, dairy and soy free diet?
Soy free only. I am rapidly coming to the decision that the other two must again be attempted. Can hardly think about making food at all, never mind get my head around particularly gluten free.
Gluten free is easy once you get used to the change
Spend couple weeks thinking about what you would eat instead at each meal
That is a solid idea. I can do that.
M&S are good on gluten free…even in lots of their ready meals
Lots of things are naturally gluten free
Bread …..most GF is grim.
Some is great, especially toasted
Personally my favourite is Waitrose brown seeded sliced. Put in freezer and take out slice or two as required
Use a separate dedicated GF toaster and don’t share butter/jams/cutting boards etc
Excellent. I do like a plan - especially one I don’t have to think of myself. Thank you.
SlowDragon, got the Magnesium citrate. It has calmed me down (noticeably with the first dose not so much with subsequent doses) but has also helped the dire constipation that I had developed quite suddenly. Waitrose GF bread you recommended has gone down well.
Otherwise the news is not so good. I finally spoke to the private endo who is now refusing and advising no T3 again, ever, or even further treatment. “It’s too great a risk for your heart. It’s not strong enough to take the T3”. This was on Monday and it’s taken all this time to gird my loins to report to you, what has been devastating news for me. She also said that I was unlikely to be able to increase my levo because of my heart (without any examination etc - being left to NHS to sort out). Halter thingy in May!
I am recovering my optimism and hope slowly; although I have no idea right at this moment how to move forward.Delgor has been private messaging and supporting me. I am very appreciative.
It’s ironic that since my first horrible issue with T3 in mid December, my brain fog is better, depression is better (excluding recent events). Then my second attempt recently has improved my muscles a bit. I am having less trouble climbing the stairs at night. It might not seem much but both improvements are hugely important to me and I never seem to run out of theories.
I am communicating this stuff because it’s better for me to say, not keep anything back but I have added it to this old post for several reasons.
I was devastated on Monday but remain optimistic (or downright delusional). I still read the forum email every day but I will sit back for a bit till I can give this a chance to see where I have got to.
Thank you for all your help. It is my intention to keep up with the forum.
Great to hear magnesium is helping
Have you seen any improvements yet on gluten free diet or too early to say?
Endocrinologist sounds like she just wants shot of you
Suggest you consider finding different endocrinologist
Email Thyroid U.K. for list of thyroid specialist endocrinologists and doctors who will prescribe T3 or NDT
tukadmin@thyroiduk.org
Too early for gluten free results. Just finding my way about again. I am thinking about NDT because I think I have read about it being more gentle. Up until now I have avoided discussions about NDT. I was kind of hoping my case would be simpler! I do have the Thyroid UK list. In fact ….. I got the endo from there. I distinctly got the feeling that we often feel with our doctors, that there was no way they were going to take the risk; no matter how keen and reluctant I was to give it another go sometime in the future. “Get shot”, pretty much describes it but at the moment I still do not feel well and my confidence is low. I am avoiding (at every cost) not to feel ill.
These symptoms are not brand new, I used to suffer them a lot when I was much younger but it’s an old heart now and I am wary. I know AF is related to vasovagal ‘attacks’ and those I am a wee bit familiar with but I had one of those the other day just to remind me. Foul. Thanks again for getting back to me.
This may not be relevant to your circumstances but after adding T3 I had episodes of adrenaline rushes late in the evening or at night. It took me a long time to work out what was going on but eventually I realised that my body was no longer able to process caffeine as it used to. I can only drink caffeinated drinks before midday and also I cannot eat very dark chocolate in the afternoon as there’s enough caffeine in it to give me the same symptoms.
Strangely these symptoms would come on hours after I consumed caffeine, I was never affected immediately.
Yes whatever the cause in me it was well after what I understood the ‘life’ of T3 was when it ran out. That was confusing but I think I have an explanation now. Circadian Rythym decides it was time to rev up the T3 the body thought it was getting but it was already used up. One dose instead of split dose. Plus SlowDragon highlights an issue with T4 still not being high enough. There is so much to learn. BUT my experience with caffeine, similar to yours is hopefully behind me. Dark chocolate rarely enjoyed now! I wonder if in regular coffee drinkers, the caffeine is mainlined into them and they don’t experience it the way non or rare drinkers do. Another little sign of how individual we all are. At the moment I just need to still be sorting stuff out. Thank you for replying to me in my hour of need. It’s just great to know people with experience are watching out for others.
intolerance of caffeine is common when under medicated…..but on T3 can be an issue too
interesting! Haven’t come across the ‘life’ of T3 aspect in this. I’ve been on a single dose (at c. 2-3am) as splitting wasn’t working for me when I tried initially.
Hope you’ll work it out soon. There’s a lot of trial and error needed in overcoming this disease and the learning of own physiology that comes with it. Lifestyle, nutrition and supplementation changes have did the trick for me eventually.
Whilst I say ‘life’ of T3 I have read about different ‘life’ lengths. So it’s not a formal fixed time that I am aware of. I don’t have any particular proof at all. However now that you mention it, it’s clearly something I need try to understand better. Whatever, it’s my own personal reaction it would seem. Other people may have more or less free T3 running around in their bodies, making their own timing different for when their bodies call for it. I See your 2-3am is remarkably close to my ‘time’ it would seem. I hoped my ‘case’ would be straightforward. When I met the first other person I came across with hypothyroidism, I got an inkling it might be difficult. I certainly did not want that for myself. I thought, keep it simple. Unfortunately it’s not simple. It may be one day when I am able to look back I can say that but now it seems remarkable complicated.
So I have read some of your posts with details about your diet and I think you're fairly immobile? The nocturnal high heart rate is something that I do/have suffered from and I just wanted to share my experience in case it is relevant to you.
A while back I had a full polysomnography sleep study done and it picked up a sleep condition called Periodic Limb Movement Disorder or PLMD for short. During sleep the legs can twitch and even kick but also it affects the autonomic nervous system. My ANS changes about 47 times an hour apparently to include blood pressure and heart rate changes. It's quite disturbing during sleep and can lead to unrefreshing sleep or being woken with a high heart rate.
I did try medication for it but wasn't able to tolerate that, so now just live with it. I mention it as although obviously disturbing in more ways than one, it is actually a pretty benign condition that causes a high heart rate during sleep. For sure having low T3 is going to make this far worse than it needs to be.
I also have a diagnosis of POTS and pandysautonomia and I see someone mentioned the vagus nerve in a reply to you. A neurogastroenterologist I saw advised me to use vagus nerve stimulation for its affects on the gut. I bought a stimulator and do that for an hour a day and theres no doubt it helps to bring the sympathetic and parasympathetic sides of the nervous system back into balance. Has helped my PEM no end as well as my gut and other random symptoms.
Sorry to take so long to get back to you. I am quite tired and still a bit wired. That is very interesting, the PLMD diagnosis. I have been told I have Sleep Apnoea and had my licence taken away. I have never felt happy about this diagnosis and what you are describing is much more like what I get. My husband says I kick him often. I am aware of doing it at least some of the time. It annoys me very much to have this Sleep Apnoea and whilst I am having all these symptoms I just don’t have the energy etc to challenge it. Most frustrating, but I hope if I improve I will ask for the test to be done again. I am fairly immobile - another source of complete annoyance. Even when I was experiencing very difficult angina stuff, I fought my way through it for years. I can still walk but not far. I can’t hang around anywhere, it’s exhausting and eventually painful. I need to sit down all the time. I can no longer visit the city centre etc. I can only go where I can be dropped off very close to my destination. Seriously thinking of a wheelchair so I can get out of the house for something other than a quick trip to the shops. I have often thought about the vagus nerve. I know it’s a problem in atrial fibrillation. That ‘defecation’ move is a form of stimulation for it. Basic but able to do at any time - if I do not forget. I am thrilled so many people have not only made suggestions but have told me of their experience. It’s when things are not going the way I want them, I need to suck up all this accumulated experience and knowledge. There just is nowhere else like it but on this forum. Thank you Jaydee1507.
You're welcome. You do sound very much like my twin, that's not a good thing by the way! I do also have sleep apnoea and use a CPAP, well APAP, also have a circadian rhythm disorder and take melatonin. Three sleep disorders, it's no wonder I don't ever have any energy. You do need a full polysomnography at a sleep clinic for the PLMD diagnosis but I hope it's some reassurance that it's perhaps not the fault of the T3, also not to be too concerned about, it so long as other things have been checked out. Just pretty uncomfortable, scary at times and a flipping nuisance.
On levo alone and low dose of T3 my heart rate changes were worse. It's possible you may have to weather a bit of a storm to come through the other side. Perhaps taking the T3 at bed time might help? I'm now feeling that the T3 is actually doing something (that the Levo never ever did) although I need to be more mobile with better weather to entice me outside. Like you I don't travel far, have a blue badge, park close to where I need to be and don't wander. I rent a mobility scooter if I'm out at a large park or venue where possible.
Have you monitored your heart rate at all with a smart watch? If it would make you more worried then please don't but for me it is a bit of reassurance in a weird way.
I have the CPAP and can’t use it. I have a follow up in March. I will just have to be honest. Too many things to deal with when really am not at all confident in that diagnosis. I want to get my meds right first. I could go on. I am going to follow you so I see what you are writing about. Circadian Rythym stuff I was always aware of but only getting round to really trying to understand it now. Who could believe there is so much involved in one “easy to treat condition”? Hah!
There's a lot of help for sleep apnoea on Facebook groups. I hear you that you aren't confident in the diagnosis but have to say back when I got diagnosed I was so grateful for something that might make me less sleepy. It did really help and since then my condition has got worse and they have put my pressure up quite high now. I'm a regular at the sleep clinic, got 2 appointments next week with them alone! My dysautonomia consultant also makes sure I use my CPAP as untreated OSA is so bad for blood pressure and the heart. Having got used to it I would struggle and not feel confident sleeping without it. Many people are like that.
Good luck for your March appointment and be sure to mention the night leg kicking and raised heart rate.
I was very grateful for the diagnosis as I hoped very much for help. Unfortunately no help and losing my driving licence did not help! I will check out the Facebook. Good luck with your appointments.
Why arent you confident about your sleep apnea diagnosis?
Are you on the mild, moderate or severe category? If mild-moderate you can look into a mandibular advancement device or a tongue retaining device. There is also a new device on the market called exciteosa. There is also the Iqora that is NHS prescribed if you're in the UK.
Vik Veer has some informative videos regarding sleep apnea on YouTube.
Sleep apnea places a lot of stress on the heart and I wouldn't be surprised if that is the source of your pounding heart. I was diagnosed with tachycardia/palpitations in the middle of the night through a holter monitor. My EKG always was normal . The sleep apnea Facebook I belong to has countless members that have dealt with palpitations/tachycardia etc due to their apnea
I have an appointment with a sleep surgeon near the end of the mouth, God willingly. Also waiting on a DISE (sleep endoscopy) , God willingly. I'm also waiting God willingly to get a mandibular device refitted because my case has proven to be difficult.
Regarding t3, I could only tolerate it in ndt. Otherwise my heart would go berserk with anything above 5 mcg.
I am not confident in the diagnosis because the night of the test I realised later I was very ‘wired’ that night. I had a urine infection (unknown to me at the time) up and down to toilet many times and really I was awake far more than asleep. I tried to contest it at the time but the man was so charming I believed him. However added to all that, I can’t use the CPAP machine. It brings on the very symptoms of sleep apnoea. Coughing and choking! So even if I have it, that is not the remedy. I looked at the mouth thing that an orthodontist can fit but was put off because at that point my gag reflex was bad. Better now.
I am going to check out your references. That will be interesting.
The symptoms are nearly gone now - 6 days now so I am virtually certain it’s the T3.
I hope this will all work out because I do not want problems tracking down and learning about NDT.
I hope you will post when you have had your appointment letting us know how you get on. I will be very interested.
Thank you Imaaan.
You would be surprised what they can find out from a relatively short sleep. Many people struggle when having a sleep test, kind of performance pressure and all that and they wouldn't diagnose you if they weren't sure.
Many people struggle initially with CPAP, you are not alone. It's a shame you didn't get a sooner appointment for follow up or talk to them on the phone. A humidifier can help a lot with coughing etc, not sure if you have one already? Also there's different settings that can be adjusted such as the 'ramp' setting which starts the pressure off much lower then builds up to where you need it.
Many people find they need to practice with it while watching TV or reading to get used to it as well.
Anyway I hope your appointment goes well.
As Jaydee1507 said you dont need to have full sleep to catch an apnea. To give you perspective, a DISE (sleep endoscopy) is about 15 min. They drug you to sleep and place a scope inside to catch the apnea and obstruction sites. That said, you could always ask for a repeat study at the clinic or at home to ease your mind.
Hope you're able to revisit the mandibular device since your gag reflex is better.
As for the coughing and gagging when using cpap , have you been tested for GERD or silent reflux? Sleep apnea and reflux can exacerbate each other and cause coughing and gagging. Also, the cpap pressure can increase reflux for some.
I'll link a video talking about the different obstruction sites. One of them is the epiglottis. For those that struggle with this have a harder time with cpap because it further causes an obstruction. So that could possibly explain your issues with cpap.
Imaan I am going to have to take my time taking all this in. I am having difficulty with this, no doubt about it. Thank you. I will catch up with questions another time.
Oh goodness you are right about the “performance pressure” for sure. That was there too that’s why I feel sure I never slept! I could be in denial. It seems to be my “go to stance” in old age. Both you and Imaaan are trying your best for me!
We are, and it's for your own good. 😉
I had terrible performance pressure doing my polysomnography study. They hook your scalp up to quite a few wires then a net was placed over the top to hold them in place. That and wearing the CPAP mask was a bit much. My circadian rhythm thing was kicking off as well and I swear I didnt get a wink of sleep until about about 5am. They wake you up at 6.30am. Still got the PLMD diagnosis though.
Imaaan made a really good point about the reflux and the symptoms you describe. Remembered I had that myself for while and struggled using the CPAP.
Oh and CPAP machines are in high demand at the moment. They used so many during Covid then there was a manufacturers recall of one type of machine so lots of stock got used to replace them. Some people newly diagnosed are waiting 9 months for a machine. Those machines are gold dust at the moment.
I think like me you have a lot going on sleep disorder wise and fixing just one would really help you feel a bit brighter and help you sleep better. May well also settle your heart a bit.
Not sure how fast your heart went on T3 but mine rose to about 88 for a few weeks then dropped back down again to low 70's. I'm so used to silly heart rate nonsense so barely paid it any attention as I knew I wasn't over replaced anyway.
I definitely would not feel comfortable at 88. However if it went up slowly, allowing my body to get used to it, that might do. Some years ago when it was in the 80s, I was aware of it but it was not really uncomfortable.
You have created a completely different range of possibilities for me re: sleep apnoea. I was going to cancel that appointment but I can see now the possibility to get something further sorted out. I just find too much going on at once is just soooo difficult. Thank you Jaydee1507 and Imaaan .
I will now keep my appointment.
Maybe one of your vitamins level is low .. just a thought.
I am having a look at potassium at the moment. I have taken it in the past. Other vits appear to be optimum at last test just before Xmas. It’s always something we need to keep an eye on. No assumptions. It’s hard work remembering, being compliant etc. Thank you Batty1.
Magnesium meant to be very helpful with sleep and restless legs and things like restleg legs that are also symptoms of MG deficiency.
Have doctors given you an ECG yet?
Mine did after I reported racing heart (which they told me was a panic attack - am still not sure).
If you’ve had it for a while, you need to know.
Also, blood pressure - how is yours? Do you have a BP monitor?
If you have had angina before - which I now see - AND sleep apnea then you should have already had a ECG at least once and a heart monitor that you wear at night and at day.
I had an ecg the last time I made this mistake, some weeks ago. Apparently they could not even see evidence of my heart attack from twenty years ago! It always shows up! Only looked at TSH. Pulse was 84 by the time I was examined (definitely worse earlier). Normally it’s about 60 these days so even 84 was a lot faster than I am used to. Did not see the point in going to A&E again. It’s soul destroying waiting and watching people who are definitely in a bad way, whilst hoping mine will pass. Honestly having experienced many of these issues I knew it was not a panic attack, although I did start to worry it was not going to ease off. I am a lot older now! BP is a little odd. It’s a wee bit high on top and low on the bottom. However even my GP did not get back to me on that. Same old same old. That’s why I posted to see how others might have dealt with it. I was embarrassed again, making another mess. I got up my courage and I have had lots of info and help. Much more than if I’d gone to A&E again. However it’s always an option for the future!
Just reading Dr Myhill's book and the suggestion is that a good resting heart rate, assuming we are not athlete's🙄 would be 70-75.... I bobble along presently at 64-66 since the addition of T3 which is up from high 50's before T3
Looking back at my levels over the last 6 months I felt at my best during the three months I was ticking over at 70-72, presently taking half the dose of T3 that I was then (as hoop jumping for Endo) but I'm going to aim to get back up to this tick over this month 🤞🤗 as I feel sluggish on the current regime
Mmmm. Interesting. I have the book but only just started it. Before diagnosis I was running at 80ish. The complications of jumping hoops after even finding a sweet spot! I need to check Ray Peat too.
Hmm, suggest you are undermedicated no?
For me it's another telling sign, if I'd had the book during sweet spot I'd have read it in a day and would be able to remember 90%, at the moment book has been here 2 weeks... apathy held me back... then I thought oh I'll just read the bit about adrenals yesterday as feeling so droopy and then felt shamed and had to start at the beginning today but I nod off after 5 minutes as my brain shuts down 😳
Not that it isn't a great book but learning is exhausting when underdosed, body obviously wants a therapeutic treat rather than a bit more knowledge, so the book is great either way 🤗
Oh Eeyore100. I am so glad you said that. Yes underdosed. Too much information (and I like information). I vote for a therapeutic treat on this occasion. Love that phrase. However according to certain endos that would make me a junkie as opposed to someone wanting to get well.
It'll no doubt be a while before I hear back from my endo sooo... my dose choice will kick in 😏 well in the wee small hours in a dark bathroom who knows what I might take accidentally ....whoops 😆
Eeyore interesting re heart rate. I am the bloody awkward one, got to be different. When I am hypo undermedicated my heart rate increases - resting rate 78 to 82. Now I am better medicated on combo my resting heart rate has dropped to 68 to 70 !
How on earth do you manage that??? Surely that defies all the theories 🤯are you running on scotch 🤣
arTistapple I take it all back! Just goes to show you can't go with a mass theory, Lala has thrown a spanner in the workings.... look back on your previous readings and see what your pattern is.... though we know from your bloods you are v low on T3
Edit.... thinking about it, is this more down to adrenal reserve and yours being able to pick up the slack? It would seem my adrenals are on their holibobs as don't even bother to kick in when I stand up
Don't know if it was because I was originally hyper and had RAI. I also lose weight when hypo undermedicated. There's always one!
You must have excellent adrenals that power you through... could you lend me one? 🤗
I definitely think your case is extra complicated to deal with. You have managed incredibly well, I think. I delude myself, or consistently hope my case is simple. However not working out that way so far. My mistakes, brought about by a not so quiet desperation, are very much contributing.
I think I understand that.
I’m the same my heart rate increases when under medicated.
What does BP high at the top low at the bottom mean? I didn’t even know this was possible. If I was a doctor I would love to see and think about unusual cases like yours. But I am not!
I think it is some type of heart failure. Probably the stress on it after years and years of being undiagnosed. The British stiff upper lip. Either that or so dopey I never pushed the medics hard enough. Now I see so clearly how they hate being questioned, never mind challenged! I feel like cannon fodder.
Seeing an NHS endocrinologist tomorrow - any tips?
Any tips for nausea? 
Chronic inflammation - any tips?
Any tips on starting T3?
Body pain
