T3 only - Life without T4 - Or lack thereof!

[Saggyuk]

Hey guys

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:

healthunlocked.com/thyroidu...

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!

Dilated Pupils/Photophobia

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!

Maths

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.

Muscle Weakness

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

[Sallybones]

thank you Saggyuk I can identify with so much of what you have written. It's so helpful to read other people's histories and how they've got to where they are. Gives me the heart to soldier on and battle to get my life back.

cheers SallyB

[trelemorele]

Hey

How much t4 + t3 do you take now?

[Saggyuk in reply to trelemorele]

I'm on 30mcg T3 and 50mcg T4 - still not quite perfect though. 25mcg T4 was definitely not enough but I need to change something as sometimes feel ever so slightly too much - not at a level that is a problem, just tiny things on some days like a little warmer than I should be and not being sleepy early enough. Might just need to take my t3 earlier in the day now and not take a dose in the evening now I have T4 in system as well or maybe need to alternate one with a slightly lower dose every other day - not sure which one to alternate yet. Possibly increasing my activity levels more in line to what I was doing before will resolve the issue. Still working on perfecting it lol

[marigold22 in reply to Saggyuk]

How long have you been on the dose of 30mcg T3 and 50mcg T4? I've replied to you today (8th Feb); looked back at your previous posts. I'm actually getting excited - to realise that maybe it's a small dose of T4 I need to feel completely sane. I've been on T3 only since 1995 when the renowned private doctor Dr P changed me over from T4 only to T3 only. He said my body "couldn't convert" & I've battled ever since to stay on T3 only via NHS. i remember that in 2013 when I had a melt down, my FT4 was extremely low.

I've been doing the Auto Immune Paleo Diet for the last 10 days & my body does feel much better. Living on bone broth, loads of veg braised in olive oil, bits of fruit in smoothies, & not much else. I've forgotten what 'normal' is now. Diagnosed in 1981 when my son was 8 months old.

[Saggyuk in reply to marigold22]

I think about 8 months ago, tsh came down to 2.something and then 1.something after adding 25mcg and then down to 0.something after adding another 25mcg. Last results being stable was just before christmas.

Yes changing diet to gluten free helped enormously for me. Don't do that for too long as not enough calories etc and need your carbs and nutrients

Just found some of the links:

ncbi.nlm.nih.gov/pmc/articl...

frontiersin.org/articles/10...

tiredthyroid.com/rt3.html (lots of links to follow in here too that's understandable)

There was also an article about T4 requirement during pregnancy in mice or rats and this is in my posts - not direct and not humans but definitely adds to support there are times when T4 is required.

I followed it through and found evidence of other things that had preference for T4 that would have consequence down the line but just cannot remember what as memory was so bad at the time. I keep meaning to retrace my steps and get the info but never have the time lol! I might do it this weekend actually so will get back to you

[Hidden]

That is an incredibly interesting account you've given us, Saggy! Very frightening for you, the whole experience, am glad you're coming back to normal. )

Can I ask, have you ever tried NDT? Since it contains both T3 and T4, plus T1, T2 and calcitonin?

[Saggyuk in reply to Hidden]

Thanks. Yes, I have been more and more lately as still have this feeling body is not quite the same as when i had some function or some natural hormones left? I want to give it a few more months of making everything else better and getting everything else perfect before messing around again and then might give it a go

[Hidden in reply to Saggyuk]

Yes many talk of NDT being the ideal replacement since it contains all the mix that our thyroid has naturally. I've yet to try it myself, am still on a T3/T4 journey along with sorting out other health issues. It's such a long slow process isn't it, so I totally understand getting yourself to a better place before embarking on that.

[SlowDragon Administrator]

Very interesting.

I assume you checked your vitamins

Have you considered dairy as a problem?

Pity you had to go back on gluten. Was this to check for coeliac?

[Saggyuk in reply to SlowDragon]

Hiya, yes checked everything - vits were not 100% optimal but no where near as deficient as most of my life before GF. checked and double checked everything - including ingredients in them and tested everything trying to find cause.

Yes, I needed more evidence as negative on coeliac blood tests so had other tests this time like stomach and skin biopsies and monitoring of my other issues. I wouldn't have done it for myself but it was quite clear my daughter was starting to follow in my foot steps health wise and no one would take me seriously or stop giving her gluten - like her dad at weekends or the school. Was a necessity I suppose and i'd rather my daughter be well than me so I have to keep reminding myself lol - gluten was proven to have direct impact on my thyroid levels!

I seem to have no real reaction in regards to dairy and nothing that would suggest continuing allergies or intolerances like when on gluten - no inflammation, no gut issues, skin issues etc? I did realise I had lowered dairy intake considerably and unconsciously in the past few yrs mind you although blood calcium levels remain perfect - not sure whether instinctively if no longer producing calcitonin - who knows lol?

[SlowDragon Administrator in reply to Saggyuk]

Yes I did endoscopy for same reason. If I was coeliac then it had implications for next generation.

My results some what ambivalent Even with "probable " negative coeliac results, (DNA test suggests not coeliac). the fact an eminent gastroenterologist has confirmed severe gluten intolerance has made medics not dismiss it as a fad!

[Saggyuk in reply to SlowDragon]

Yes, mine too. My gastro was pants though lol - said nothing wrong with me and admittedly, the part of the stomach they biopsied looked a perfect picture of health. Didn't take into account other tests had shown I have a massive problem somewhere in my stomach and didn't care to explain so maybe damage is elsewhere or maybe I didn't eat enough gluten in the trial as wasn't quite six weeks and found it very hard to force gluten down my throat.

However, the consultant who did the skin biopsy of my blisters stated categorically severe non coeliac gluten sensitivity - she found evidence of them being caused internally and other immune cells even though not the specific coeliac ones. When I first went to see her, I didn't have any skin conditions as was GF so dared her I could prove it by eating a piece of bread in front of her and showing her the blisters that pop up twenty mins later - fortunately she was intrigued enough and when the blisters did in fact pop up after twenty mins, she immediately booked in the biopsy for the end of the next gluten trial lol.

My endo was the one pushing these tests in the first place because he could see I was so much healthier and appeared to completely reversed Addisons and diabeties which had just started and an autoimmune sleep disorder vanished when I went gluten free plus was the first time I wasn't under range with iron. So he did tests on all my other issues the day before each gluten trial and the day after and it was clear it was having a major impact on my immune system and associated conditions. For example, my tsh shot to 30-50 at the end of each six week trial and took three months to normalise after.

So he also gave me diagnosis of NCGS. Both consultants had seen my daughter at every appointment during these trials as she did them with me so they could clearly see the results for her too but were unable to state officially as she was not their patient so both decided to state highly genetic in nature so would cover my daughter as testing her would be difficult, stressful and she didn't have the damage I had yet. Thankfully this was enough as even GP spoke to her dad to tell him to get her off it and said cause of her increasing symptoms of stomach distention, so called toddler diarrhea, eczema, asthma at night, inflammation in joints etc. So fingers crossed it was early enough to prevent all what happened to me and all these issues resolved immediately.

The consultant who did the skin biopsy said it has become apparent to her and many other docs now that there is another issue similar to coeliacs but is diagnostically different and appears to have a wider affect on the body rather than focused on the stomach and that they won't be able to dismiss it much longer due to mounting evidence and believed they would have a name for it in a few yrs but are still unsure diagnostically so hopefully other people might be sorted properly too in the future. She was a wonderful doc to be honest.

I was lucky to have an okay endo who I've seen regularly for fifteen yrs or so to be honest as although he didn't initially think trying GF would do anything, it was only because of him seeing the clear difference and major improvements that got me anywhere near a diagnosis. It would be a different story for most who see different ones every time or none at all or have crap docs as usual lol!!

[SlowDragon Administrator in reply to Saggyuk]

Yes exactly. That's why I stuck with my endo through thick and plenty of thin!

He can't believe the difference since I went GF

I had absolutely no symptoms, other than couldn't walk!

He did standard coeliac test twenty years ago. Negative. And GP did one just before endoscopy. Still negative

When I saw gastroenterologist, I was virtually immobile, unable to walk, having very recently gone gluten free. Advised I must not do gluten challenge, was I was too badly affected. He did endoscopy straight away (no wait if you pay!)

Endoscopy suggested it was coeliac

DNA test after endoscopy suggests NOT coeliac but NCGS

Yes he told me they are working flat out to try to get a test for NCGS

[Saggyuk in reply to SlowDragon]

Yes, I was in a similar bad way and unable to get out of bed and it was clear I was deteriorating quickly plus the prospect of having to take meds for other auotimmune diseases and thinking what would be next.

Finally and miserably, I was having to consider giving up full time custody of my daughter as single mum and was no longer fit to look after her well enough after she stopped napping a lot during the day and was required to get to places like nursery on time - and certainly in no fit state to work.

This was what motivated me to desperately relook over any newer and older research with a fine tooth comb and read everything and anything I could find with any link between causes of thyroid/diabeties/immune system etc and learn this stuff for myself. I had looked sporadically over the yrs but nothing available or found. Didn't know there were good sites like this now and last time I had looked at forums 10 or so yrs ago, they weren't exactly easy to take seriously at the time or knowledgeable on what they suggested and hadn't thought to check again lol.

I did come across research on rats suggesting gluten is highly influential in their diabetic status and another from europe suggesting a much higher incidence of gluten intolerance in auto-immune thyroid peeps when put through extensive testing including stool analysis and also read that coeliac testing itself was unreliable. It just clicked immediately as complicated as my health might have been, digestive problems had preceded the thyroid and everything else by 10 yrs since I was about 5 and had to be sent home from school every day after lunch. Had these problems so long thought my digestion was just the way it was supposed to be all those yrs lol. Wasn't hopeful but thought at lest might sort the diabeties out but transformation was astonishing and everything I wasn't expecting cleared up too!

Anyway changed my life although I have to stop myself from dwelling on what if I'd known sooner

Glad you're feeling better, did you get your full mobility back?

[SlowDragon Administrator in reply to Saggyuk]

Yes, but not till T3 added approx a year after strictly gluten free.

Now walking or "gentle gym" every day for an hour, building up my strength

More on my profile

[Saggyuk in reply to SlowDragon]

Oh I'm glad, did have a quick look on your profile but must have missed that bit. Glad you're feeling better

[SlowDragon Administrator]

Recommend reading Dr Chatergee new book The four pillar plan. Lots on gut etc.

[nightingale-56]

Well done Saggyuk for being so observant. Although I (and my special needs son) are having awful skin problems since being changed from Goldshield Eltroxin almost 8 years ago, I instinctively feel that I definitely need some T4 in my system. I have felt very buoyed by your interesting and helpful post. Wish you well in the future.

[Saggyuk in reply to nightingale-56]

Hey Jbee, skin problems are so aggravating aren't they! I hope you are able to work it out soon and get some relief - I''m sure you'll get there, it just always take sooo long lol. Warmest regards to you and your son

[ShinyB]

This is fascinating. I reduced my levo from 100 to 50mcg as it just felt toxic. I'm wondering if I need to stop taking levo for a while and just take T3. I'm so brain fogged at the moment that I struggle to think straight! But T4 obviously has a vital function, beyond just being a storage hormone.

[Saggyuk in reply to ShinyB]

Hi there, I did have a quick look at some of your posts and didn't see anything specific and just in case you haven't tried yet - I had the worst sleepiness and foggyness for years and was even diagnosed with an autoimmune sleep disorder so know exactly how that can feel - this reversed alongside much else a few months after going gluten free so well worth a try

Yes, it seemed when I was first put on T4, it also seemed to pool in my blood, I could almost sense it and body didn't seem to do naff all with it and refused to convert it to t3 which is why I was on t3 only in the first place. Inflammation appears the cause in me and prob mixed up wit nutritional deficiency and other issues but inflammation definitely key. It didn't happen when I was on T3 only (until I had no T4) although had to have over range T3 results throughout so still clearly wasn't utilising the hormone enough. I suppose theoretically, T4 stays in your system for much longer meaning more likely to accumulate if you keep adding to it whereas T3 clears pretty quickly meaning less likely to accumulate - I always felt it declining after about 3/4 hours after taking some. Anyway just pondering rather than anything scientific lmao!!!

Anyway since GF, I need half as much meds as I used to need and I am now clearly converting??

[ShinyB in reply to Saggyuk]

Hi I've read your reply about six times now and my brain still won't compute! ugh. I hate brain fog with a vengeance!

I am largely gluten free and grain-free and have been since early 2016. I did this along with a high fat, low carb regime. I definitely felt good on it for at least a year. Really good in fact! And I lose 3 stone in half a year without eating any less (I'm a bit of a piglet when it comes to food lol). I had more energy and had less depression.

But... after a year, I found I had less energy.

I did a full thyroid profile in Sept 2017 which showed low T3, below range -

THYROID STIMULATING HORMONE 1.62 mIU/L. 0.27 -4.20

FREE THYROXINE 14.9 pmol/L. 12.00 -22.00

TOTAL THYROXINE(T4) 66.1 nmol/L. 59.00 -154.00

FREE T3 *2.77 pmol/L. 3.10 -6.80

REVERSE T3 16 ng/dL. 10.00 -24.00

REVERSE T3 RATIO *11.27. 15.01 -75.00.

It was at this point that I increased my levothyroxine (I'd been on 50/25 mcg alternate days since 2013). And the brain fog problem started from the levo increase.

It improved a teeny bit when I first added in some T3, but it's not made that much difference. I'm now up to 25mcg T3 and am having a blood test on Monday to see where I'm at.

I'm seeing a nutrition therapist and am rattling with supplements lol, but I take digestive enzymes, various things to reduce inflammation (although my CRP -HIGH SENSITIVITY was only 0.9 mg/l 0.00 -5.00 which I didn't think was that bad), stuff to support adrenals, and lower cortisol. Nothing seems to be making any difference. I'm actually wondering if I'm absorbing anything from them all if I'm having a problem using T3 because of T4 toxicity. I have no idea, really! I'm clutching at straws perhaps, but I'm finding this constant brain fog really distressing and unbearable!

Sorry for the waffly reply... I will keep re-reading your reply till my brain absorbs it! Thank you