Just wanted to give specific details of symptoms I had with none or little T4 in system as might just help someone else in a similar situation in the future who can't figure out what's wrong with them.
I have had hashis since my teens 25 yrs ago and was put on T3 only five yrs or so later as showed no conversion. Was on 50-60mcg Liothyronine all that time until a few yrs ago when decreased to 30-40mcg after going gluten free. Had multiple other health issues which also disappeared after going GF and spent two years feeling amazing. I then had to undertake three gluten trials and felt awful again. Once these were finished, the normal health issues that I get on gluten disappeared again as expected but started to get new symptoms I had never experienced before and was starting to feel like my body and brain were literally about to fail completely.
These were the symptoms:
Bizarre thyroid results and inability to lower TSH
My thyroid results were all over the place and nothing would reduce my tsh even if had over range T3 levels as you can see in this post:
Some results were TSH 4.56, T4 <3.2 and T3 6 (3.8-6.7) and TSH- 10.18 T4 - <3.2 T3 - 4.5 (3.8-6.7) or TSH 3.8 T4 <3.2 T3 6.9 (3.8-6)
Prior to this time, my tsh had always been kept at 1 or just under even throughout pregnancy and regardless of other health issues. It seemed my body wanted something other than T3.
Result after T4: TSH started dropping after six weeks of taking T4 again and dropped with each increase until now normal at below 1 again.
Hyper/Toxicity of thyroid meds and vitamins
I basically felt toxic most of the time (worse immediately after meds) and had physical indications of being over medicated including nausea, hyper reflexes, sweating, weight loss, etc. This happened whether or not T3 was in range or above. I felt like too much was getting to some parts of the body and not enough in others and my body had somehow lost its control of this. This basically also applied to all my other meds/supplements, couldn't take them including Vit B12, Vit D, Iron, and so on- simply became toxic after a few days and sometimes dangerously so. I've been anaemic etc for years and on iron and never experienced problems taking meds for this before. Had to chose to purposefully become very hypo for a long time and ignore nutritional levels as was better than the above and body would accept nothing. Felt like something was missing.
Result after T4 - calmed down almost straight away and resolved completely after a month or so. Most deficiencies resolved themselves as well after about six months without meds strangely. Can take all meds now without any issue.
Zero Hair Growth on head/legs only
I literally had no new hair growth during this period (eyebrows seemed okayish) - Did start growing a couple of beard hairs though typically lol! I have very thick hair and have had hairloss multiple times before with various health issues but I wasn't losing hair unnaturally - simply didn't grow any new stuff which after a year became visably thinner and thinner and have had to hide it by putting hair in bun every day. also greyed faster than before.
Result after T4: started to get new hair growth after a month or so and growing ultra fast- now have half a head of hair down to my bum and half a head at bob length - great look lol!!!! Colour also better with some jet black strands rather than grey in some areas - possibly unrelated though lol!
Was diagnosed by optician with photophobia as pupils no longer responded to light at all causing terrible headaches and problems with glare - had to sit in dark, have screen turned to lowest brightness possible and was prescribed dark glasses but still struggled outside and had to look down or avoid.
Result after T4: Pupils were dilating normally within a month. No more problems with light although am left with sun damage typical of an 80 yr old because too much sunlight being able to enter.
Two weekly periods and zero sex drive
I literally had periods every 14 days on the dot for nearly nine months towards the end when I was purposefully hypo - hypo had always made my periods further apart before so didn't fit with historic experiences. Have not thought about sex for a few yrs at all although had high sex drive before these issues. Not menopausal although possibly early ovarian failure - still not clear.
Result after T4: The next period I had immediately after taking the T4 went back up to three weeks and now at 3.5 weeks so completely resolved. Sex drive not returned lol! Only just got up to proper dose a few months ago so am still hoping lol! Maybe other cause for this one?
Long term Memory loss
My memory declined so much during this time that I honestly believed I might have early on-set dementia or similar although I was losing the early memories first. I've had issues before with short term memory when severely hypo with ataxia for example and was suffering similar this time and not taking in new memories - lots of people saying we'd had conversation that I just couldn't recall etc. But I've always remembered everything I remembered before - had a ridiculously good memory from age 2 - remember every second sat in class in school as if there etc. During this period, I was losing large chunks of memory daily and could no longer recall anything from childhood, daughter's date of birth etc. Was scary to be honest and causing huge issues at work as well. Thought I was doomed.
Result since T4 - stopped losing more memories within a month. Luckily it's slowly started to all come back - sometimes just bits here and there and some days being flooded with large amounts - so issue seems with access rather than actual loss. Still a way to go though but getting better weekly.
Lack of Emotional Response and depersonalisation maybe?
Zero - felt nothing, love, sadness, happiness, excitement, laughter - nothing. No longer cried at music or films which used to make me cry, hugs from daughter - felt nothing and no interest in anything. This happened slowly over time and wasn't so noticeable at first. Felt like no me in there or couldn't identify myself anymore - too strange to explain properly really. Didn't seem like me in the mirror, felt weird and no longer wanted to spend time just with myself and thinking like I always enjoyed. Felt strange like I simply could not access this part of brain or me basically like with my memories.
After T4: This is also coming back but very much slower than anything else but definitely reversing - have had tears, laughed, felt smooshy a couple of times - am interested in things again.
I'll be honest, in regards to the memory/emotional issues, due to a somewhat previously unresolved postnatal ptsd issue that had magically cleared up, I did seek professional help on this as was trying every avenue to work out what was going on with my health and this can lead to memory/emotional issues. This doc actually had a special interest in brain formation and biology or neuro stuff etc - can't quite remember what it was. After six months of weekly appointments (during which I started the T4 and she said the difference in the way I spoke and memory a few weeks after starting t4 was dramatic), she actually concluded in a letter to GP that it more likely the hormonal issues causing some kind of issue with amygdala/hippocampus/dendritic spines or something and that this is likely why the ptsd suddenly disappeared for no reason as part of brain involved almost switched off physically i think is how she explained it to me - all way above my head to give any further explanation anyway as don't really understand or remember too much???? On the plus side, she literally blasted my docs for years of incompetence and failure to resolve my physical health issues in her discharge letter lol!
My maths - even basic was becoming dire - problem as my job is currently accounting and figures lol! Just couldn't do it and would take me ages to do basic stuff I'd been doing for years and just could analyse any figures or work out what the errors were etc. This is the complete opposite to what has happened before as have experienced issues with my vocabulary before to the extent had to relearn all language at one point - but never affected my maths. Language seemed fine this time?
Result after T4: All is okay with my maths now - maybe a month or two to get better enough to complete the company accounts on time lol.
I've had trouble moving in the past because of no energy or unable to get out of bed or because of lots of pain/inflammation in bones/joints (which were not an issue during this time) and also instability and falling over with ataxia but never lost strength before and could always push myself - felt like muscles were wasting and becoming extremely weak. Had to break up simple things like brushing my hair/washing up and stopped doing makeup as found it really difficult to keep my arms up high for any length of time. Started having to get taxi's everywhere instead of walking and so on.
Result after T4 - improving, can walk fine now. Slow progress but to be honest it's more likely that I'm not doing enough to build muscles up again but don't have the same wasting feeling so am happy can resolve with a bit of effort lol!
Finally my last set of results were:
TSH 0.567 mIU/L 0.27 -4.20
FT4 *8.19 pmol/L 12.00 -22.00
TT4 *55.0 nmol/L 59.00 -154.00
FT3 5.98 pmol/L 3.10 -6.80
I did do one blood test after which showed tsh at 0.23, t3 top of range and T4 just over bottom range and endo was happy to keep me on that as previous lower dose made me feel slightly hypo so now all good and as shown - much improved.
I had been experiencing these problems for approx three years - starting gradually building to a point where I thought I literally wouldn't last much longer and was on the verge of becoming senile and I literally tried everything and anything to try and work out what was going on and trying different things - but nothing worked. These were all brand new symptoms I had never experienced before in all my decades of multiple auto immune issues, deficiencies and health problems and they have all resolved at exactly the same time so I believe 100% that the only cause could have been a lack of T4. It has been 9 months back on T4 so long enough to believe it's not just a temporary reprieve from something else and it all improved in line with each and every increase of T4 so can't believe it can be coincidental.
I wanted to detail them exactly in case it rings a bell with anyone suffering the same. it took me a long time to figure out what the issue was as had been on T3 only for so many years and had never took any notice of T4 results so hadn't even contemplated this as a possible cause. It was only a last ditch look at all historic results from the beginning after ruling everything else out that it suddenly became apparent that up to the exact point I started having these symptoms, I had been producing my own T4 to just over or slightly under range which was no longer the case. I think maybe the gluten trials was the last straw for my thyroid possibly? On the plus side, since quitting gluten, I can actually convert T4 perfectly fine now and is actually easier than the ups and downs of t3 only as feel far more balanced over the day.
Furthermore, before I had gone gluten free, my health had deteriorated so badly, if I hadn't have had a really healthy couple of years before this happened, I might have just accepted that my body just wasn't coping anymore and nothing I could do about it. I don't want anyone else to feel the same way or deteriorate this badly and I think so many of these issues could easily be accidentally associated with other health issues, just accepted as old age/menopause or something separate or ignored - not everyone needs maths or wants to be emotional lol! I personally found it boring and disturbing! I think these are very distinctive symptoms also.
There are many who will disagree but there's a bit of research supporting some of it at least and I can't believe your body can live without at least a small amount of T4 - for example, you won't even be able to make reverse T3 at all as made from T4 and so on- and I wholeheartedly believe every hormone is there for good reason. Many of those on T3 might only be feeling great as possibly still making some T4 like I did for decades, many who've had their thyroid removed may also have a small amount left or regenerated a little etc etc. I would want to someone to prove to me they've had zero or unrecordable T4 levels for three years and still feel great and perfectly normal for me to accept maybe it's just my own body that requires it or I had some other bizarre disorder! I am open to the possibility though lol.
I think its rare for many to have been on T3 only for the amount of time I've been - up until now anyway so maybe other people might start facing the same issues at some point so just wanted to put something out there as i truly felt worse than I've ever experienced before - and that's saying something!
Apologies for the extensive essay but wanted to fully demonstrate why these issues were very different to anything I'd had before. There's little info around or personal accounts so thought this might help at least one person one day