Hi Guys
Apologies for my last post, I was in a very bad way and struggling with anything written/ requiring thought 
healthunlocked.com/thyroidu...
And apologies again for the lengthy post - it's just a bit complicated I suppose and I'm running out of ideas.
I've been having issues with my heart and seemingly my autonomic nervous system (ANS) since I was in Hospital at the beginning of March. I had multiple issues but also sinus tachycardia and POTS. At the time my heart rate was 120-130 lying down, 150 sitting up and 180 and out of sync beat upon standing - a difference of 50 (as per POTS) linked to the autonomic nervous system (ANS) and all my symptoms mentioned in above post do correlate with ANS and HRV is dire also indicative supposedly so I suppose I will go with that as being the issue. Was completely unable to do anything even stand up for more than a few minutes or sitting up for too long.
I did have an echocardiogram/ 7 day ECG Monitor and there was nothing found to be wrong with heart or valves physically or structurally so doc said it's something driving my heart rather than my heart itself. Also had the veins in my legs and pelvic area checked for another reason and they were found to be in pretty good condition although was noted I have a lot of fluid in my legs that should be investigated. I do smoke but all doctors had to admit that there is currently no evidence at this time of this being a cause of said issues or valve issues etc. I do really want to quit but am reluctant at the moment due to current exaggerated stress responses that I don't want to worsen. They also checked some adrenal issues via metenephrines and hydroxyindoleacetic Acid but nothing significant. They suggested caused by Covid (easy way out) but no indications of having been ill prior to March or current antibodies - I likely caught it last February 2020 though.
Was prescribed Ivabradine but decided not to take it until worked out what was behind it as is my usual stance. Figured I may have just buggered my ANS via not getting enough sleep or lifestyle etc and wanted to check for patterns to get to the bottom of it. Anyway, fixed a few things and have it a little more under control and can function again to a degree and do school runs etc - the difference of 50bpw is still pretty much there (30 or just under on period) but managed to get my heart rate from between 60-85/90 to 120-150 lying to standing (60 obviously being asleep lol) depending on good or bad days by effectively micro managing my ANS (which is exhausting tbh). All sorts of things make it worse that I've learned to avoid- too hot (mostly) or too cold, eating too much or not eating/drinking enough, doing too much physically or sitting still for too long and so on, also stress responses and allergic reactions are heightened too etc etc and have a bad impact plus I'm having to manage my blood sugar levels a little better.
Anyway, sorry for the lengthy background but now onto my thyroid as I'm just soo suspicious something not right there still. I used to be on T3 only for 15 years+ (60mcg) as they couldn't get my tsh down any other way and T3 levels under range. However, against the consultant's wishes, started on a little bit of T4 a few years back as started to have issues when T4 dropped to unrecordable levels (assumed thyroid died as had autoimmune thyroid issues for almost 30 years and because my TSH went funny and a little T4 did the job). However, I found more and more that I just could not tolerate the T3 anymore and have been switching this out for more T4 for the past couple of years. Since last year I was supposed to be on 100mcg T4 and 20mcg T3 split between two doses a day. But again found I just could not tolerate the second dose of T3 many days anymore so mostly started only taking 100/10 although did take the full dose a couple of days in the week before I was in hospital as felt so tired. The above occurred and couldn't tolerate barely any thyroid meds for a few days or more so kept missing doses almost entirely from when I was in hospital as felt hyper and then did a test:
03/03/21
TSH 1.15 (0.27-4.2)
T4 18.3 (12-22)
T3 7.25 (3.1-6.8)
Please note that these were taken at the wrong time as were in a heap of other tests looking at other things so wasn't really looking for the thyroid labs so were only a 2 hours after taking dose of 100/10 together. Historically my TSH would have normally been suppressed at these thyroid levels.
I felt positively hyper but as the helpful people here pointed out, because the test was taken two hours after dose, they likely were artificially high and that I am undermedicated and likely the cause of my problems as not taking full dose (plus I had taken biotin within 24 hours) so figured maybe I am undertreated and just not having the same symptoms as usual or maybe my body got too used to T3 only for so many years that my systems not happy with these changes.
So I forced myself to stay on 100 T4 and 10 T3 since (separately unlike before with T3 late afternoon only) and gave it a while to retest without biotin too and at the right time. However throughout this time tracking, I have noticed some patterns such as I am definitely sensitive to my thyroid meds and my heart rate is worse after taking the morning dose coming down around 4.30 and then again after the evening T3 only starting to come down at around 11pm and then significantly further (almost normal) some point between 1-4am in the morning. Then I take my dose of T4 again and it starts all over again. Not every day but most days seem to follow this pattern. My results having taken the same dose for a couple of months with 24 hours after T4 and 12 hours after T3 (apart from I did accidentally take the T3 with dinner/food for this test so likely absorbed a little less than usual):
24/05/21 8am
TSH 0.51 (0.27-4.2)
T4 16.3 (12-22)
T3 5.6 (3.1-6.8)
This to me suggests I definitely would have been high on the 100T4 and 20T3 from last year so was right in my extinct to keep skipping the 2nd T3 dose many days since then anyway as these seem perfectly fine (if not better than expected) just as I would be taking another dose.
However although perhaps okay on this dose, I am definitely still feeling more pants when I take my meds and I can't ignore other factors such as the significant weight loss of two stone since the last test even steady on the 100T4 and 10T3 nor other indicators such as my nails are literally growing two or three times faster than their normal rates and I am too warm all the time (super cold since a child) with hands that are really red and so hot my daughter can no longer hold them and I cannot hold a wrapped choc bar more than 3 seconds before melting it to oblivion so am still not comfortable that nothing is up with me thryoid levels.
I figured doing the test again at the point at which my heart rate drops at night might offer some clues to see whether I am spending the majority of the day hyper and this is what I got around 12.30am (should have done them a little earlier tbh):
14/06/21 Midnight
TSH 0.38 (0.27-4.2)
T4 15.2 (12-22)
T3 5.5 (3.1-6.8)
They are pretty much exactly the same as the ones I did 8 hours later which is really confusing me!! The ones in the morning are actually better than these taken 8 hours earlier. Admittedly they were on different days so not directly associated but my thyroid labs were always so consistent in the past you could literally tell what time of day I did the blood test from how much it had changed or dropped off so this really is not my usual and something has changed from the 3 decades I've had thyroid issues. I'm thinking I should do them again but on the same night?
I decided to do my antibodies too just to see and these were somewhat surprising to me too:
TPO - 243 (0-34)
TG - 76.6 (115+)
I know these are often up and down but I've had about 20 tests over the years and my TGs have always been very high and my TPOs are half of what they've always been and can see they've been reducing with each test in the past few years on the tracker. But as noted, likely insignificant I know.
Anyway, I suppose at least I can write off having been undermedicated as being the cause and clearly I am not having a problem with converting T4 into T3 like I used to as only on 10mcg of T3 so can't be that my body was too used to T3 only like I desperately pondered as there's enough T3.
I still feel pants though and I still feel wrong and cannot ignore that many of symptoms are typically of being high and not how I feel when I've been hypo which I've had a lot of experience with over the decades so as of last weekend I reduced my dose to 75mcg T4 and 10T3 just to see what happens as figured a couple of weeks shouldn't hurt too much and my instincts telling me to get off the T3 previously and then reduce were obviously correct. If it doesn't work, I'll just have to take 75 and 20 until I can get new prescription for 100 again.
I've had mixed results to be honest. Most of the things I've been tracking are improved a little this week - resting heart rate/sleeping heart rate, the high heart rate up until a certain point at night moved to much earlier, HRV has gone up to a more normal 30+ and stayed there. Iam having more tingling again though. Even Friday, I was walking around outside the office momentarily and my heart rate stayed at 90 for about 15 minutes which is astonishing. However other times, it's just as bad or worse especially with brain and tiredness/alertness but it's actually worse than before after taking meds which is confusing me even more so. Both yesterday and today after taking the morning T4, I had sweaty palms, fast heart for no reason etc and felt crap until about 10.30pm yesterday. My brain was not functioning at all even though I imagined going totally hypo would take a little longer and was almost ready to take meds and give up as thinking I can't cope with this and what am I doing but then I suddenly felt hugely better at 10.30pm - after my levels drop a little I would assume? slightly better today but am resting but super hot. So my meds are having an impact some how or another but possibly I'm just sensitive to them because of what else is going on like everything else I am sensitive too at the moment,
I'm still searching for answers though, all other labs and tests haven't come up with much to be honest - maybe a few changes that I noted could indicate a high turn over of red blood cells or something else like that up and I am struggling to keep my iron up at the moment unlike previously. My eyesight is still too blurry and I'm struggling with this. The opticians I saw a few weeks after hospital say it's an expected change at my age and just need new glasses but I can't help but wonder why it happened so suddenly on the exact same day I went into hospital and why it's got worse again since having the eye test so must go back.
The only other pattern I've got to work with is that there are normally significant improvements for a few days on my period which is in opposition to most female POTS patients. I've checked all my female hormones a couple of times in the past month (once as included in other tests and the other more in depth including testosterone, progesterone and prolactin). There's nothing seemingly up with these - well apparently I'm more likely to still be able to have a baby than I was last year perhaps I think testosterone is too low as not really got a proper result, just less than 0.4 but their range started from zero. I was again surprised at this as have had no sex drive for the past few years and grow beard hairs (wonderful) so figured might be down to high testosterone but clearly not. I obviously did these on my period as you are supposed too which is the point at which I feel better but I think I will redo them in the latter half of my cycle perhaps to try and work out why it's better on my period which then might give me a clue as to why I'm having these issues or what might be piggy backing off these hormones at other times.
I also want to do my cortisol but medichecks aren't doing the saliva ones at the moment - is there anyone else you can suggest with reliable results? I perhaps need to so some more blood tests in the adrenal areas too to write that out as have had failing adrenals/issues in the past.
Obviously I may need to see a neurologist too but just trying to discount the more obvious first - plus would nervous system problems improve on your period - I would assume not??
I'm starting to ponder a few other things too - as many doctors warn whether fact or fiction, maybe this is the result of being on T3 only for too many years when I really shouldn't have been. Or maybe a system can only cope with the over range/under range of unbalanced levels of thyroid replacement hormones for so many decades that wouldn't be the case without thyroid issues.
Anyway, suggestions of anything I might not be seeing or am missing would be hugely appreciated or anything else you can suggest to look into.
Many thanks, Sarah
Thyroid test is “normal” but still have signs of thyroid issue
Heart implications? Or just more thyroid issues?
Thyroid levels and heart failure
Confused over blood results 
Confusing Thyroid blood tests
