Been on a bid of a journey with my medication this year and becoming increasingly frustrated and confused as to where to go next. Would really appreciate a steer from the collective please 🙂
I'll give you a potted history and try to keep it brief!
- Diagnosed subclinical hypo with antibodies 2017, started levo
- Titrated up to 187.5mcg equivalent by 2020-ish, usually Actavis as allergic to acacia and taken at bedtime with water to avoid interferance (taken as 2x 100mcg 3 days and 1x 50mcg + 1x 100mcg on the fourth day)
- FT3:FT4 ratios always very good / didn't seem to exhibit signs of not converting well - always followed testing protocol advised here ie. test early, last dose levo 24hrs before, no food, only water etc.
- Found I felt alright for a time on levo but slowly deteriorated to being pretty much house bound with hypo symptoms creeping back in
- Worked over the years under advice picked up here to better vitamin results for folate, B12, vit D. Always take methylated vits, D3 as oral spray with K2-MK7 and magnesium to support. Dabbled with zinc, NAC and selenium but found no noticeable difference
- Tested adrenals via 24hr saliva test on occasions where I had symptoms of low cortisol. Supplemented with adrenal glandular kindly recommended by SeasideSusie while she was still with us until improved
- Sought lio through private GP beginning in 2022 - think this is where I started to make some mistakes! Can't remember the particulars but started adding 5mcg to levo and over time increased lio / reduced levo. Now think I might have done this too quickly and not properly identified the signs of over medication as it had been so many years since I'd felt "normal"
- Eventually moved to just lio and found a comfortable dose of 40mcg taken 8am 10mcg, 3pm 10mcg, 8pm 20mcg. Appreciate unusual to take the larger dose at bedtime - we'll come to that. Found it helped me sleep and avoided jittery feeling / jumping heart rate. Was comfortable on this for a good many months, thought we'd cracked it
- Jan 2024 started getting severe low cortisol symptoms and sought private endo help from a doctor recommended here. While waiting for appointment, did cortisol saliva test and began supplementing glandulars again based on results
- Endo supportive of lio approach and understood the intervention I'd made but suggested late large dose of lio was giving me a peak overnight which was bringing my morning cortisol peak forward, meaning I was hitting a dip on waking which of course wouldn't have shown on the testing I was doing
- Under advice, adjusted lio dosing to 10mcg every 4hrs from waking, removed gladulars and saw immediate improvement to low cortisol type symptoms
- As temperature increased during summer, found my tolerance for lio dropping and steadily reduced dose over the summer months until I found a point where it felt like taking less felt under medicated and more felt over medicated
- Continued not to tolerate dose so had to drop it as I was feeling incredibly anxious, heart pounding - had a couple of trips to A&E because of the feeling of pressure in chest and heart rate so it didn't feel like a choice to drop it. Each drop usually resolved over medicated feeling for a time
- TSH increased so we reintroduced levo in July as I couldn't hack any more lio - responded well to this initially
- Continued to increase levo and reduce lio - aware I've not been on enough but choosing what I perceive to be the lesser of two evils and be steady but hypo rather than over medicated and feeling like my heart's going to explode.
Summary of more recent test results below, testing protocol of last dose lio 8-12hrs before, last dose levo 24hrs before, early testing, water only followed for each. Also ensured no B vits in week prior to testing.
Jul 2024 - taking 20mcg liofor 3-4wks, no levo
TSH 4.78 mIU/L (0.27-4.2)
FT3 5.4 pmol/L (3.1-6.8)
FT4 6.2 pmol/L (12-22)
Sep - taking 25mcg levo for 8wks prior, 15mcg lio for 4wks prior - reduced lio 5mcg at 2wks into change and further 5mcg at 4wks into change
TSH 5.33 mlU/L (0.27-4.2)
FT3 5.33 pmol/L (3.1-6.8)
FT4 10.6 pmol/L (12-22)
Oct - taking 50mcg levo, 5mcg lio for 5wks prior. Requested testing early as feeling deeply hypo and anticipating it would only get worse!
TSH 5.62 mlU/L (0.27-4.2)
FT3 4.8 pmol/L (3.1-6.8)
FT4 13.1 pmol/L (12-22)
Folate 6.9 nmol/L (7-35)
B12 66.5 pmol/L (37.5-187.5)
Vit D 61.7 nmol/L (50-250)
Since those tests, increased to 75mcg levo and 10mcg lio which felt too much. Reduced to only 5mcg lio, then no lio until feeling slightly hypo. Now can't reintroduce even 2.5mcg lio without feeling over medicated. Also reintroduced my B complex, folate and vit D3 and K2+MK7 as suboptimal.
So this is my conundrum and a few questions I have around where I am now, what I think's going on and where to go next...
- Suspect I've moved too quickly historically and I'm kind of yo-yoing now between too low and too high - probably being to reactive to each?
- Based on my history, I'm inclined to think that levo only wasn't right, lio only wasn't right, I convert ok - do I need a good steady dose of levo to get my FT3 and FT4 back up top of range and then maybe a little lio just to get that cell saturation?
- At this juncture where I don't seem to be able to reintroduce even a little lio, am I best sucking it up for a 6wk period on only 75mcg levo so I can retest, increase and maybe try reintroducing lio later when my vits are better? I don't think I can physically or emotionally take persisting with even 2.5mcg lio for a period of weeks!
- Is there something I'm missing here?! My cortisol doesn't feel out of whack currently, I'd guess it's possibly high if anything. I've trialled gluten free in the past but found now discernible benefit. I love dairy and don't seem to exhibit an intolerance so they'll have to prise milk and yogurt out of my cold dead hands 😂 But is there anything else I'm not considering!?
More than happy to provide any other info that might help. Willing to consider just about anything at this point! Many thanks in advance 🙂
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hjh88
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As you've tested before the minimum 6 weeks then these tests cant be relied on.
The intolerance may be due to lack of optimal vitamin levels which is a fairly common. Now you have restarted supplementing then over the next few months you should hopefully find you tolerate increases better.
When you were on Levo alone, were your key vitamin levels all at optimal levels?
My understanding is that not converting well is just one of the reasons why someone might take lio - I’ve deffo been wrong before though so would appreciate the steer if this doesn’t make sense! For me, I took levo only for roughly 5yrs and found that it never resolved all of my symptoms and, despite some initial relief, my health deteriorated in that time to the point I was basically house bound. Symptoms unresolved included fatigue, poor sleep quality, intolerance of physical activity, continued weight gain, cold, brain fog, hair loss etc. Taking lio stopped all of these, I even realised I had thinning outer eyebrows (they’d never grown in) and I started getting ovulation pain which is never experienced before.
Noted re: tests. I’d been under the impression that on lio only testing could be done at 4wk intervals, hence the 4wks in July. Appreciate the others aren’t up to scratch - this is me trying to hit the bare minimum for changes because I’ve felt so ropey. I’m just going to have to brave it out aren’t I.
Yes, worked on vitamins over many years with the help of this forum while on levo. Focused on B13, folate, D + K and magnesium glycinate and supplemented consistently up until earlier this year. I paused supplements when getting into dose adjustments in case of any interference and so I wasn’t changing too much at once - this seems to have ultimately backfired as it’s been a much longer process than expected and in that time they’ve all dipped to suboptimal or low. Always careful to take separately of each other and of thyroid meds. Usual day of supplementing with meds looks like lio on waking, usually by 8am, Bs and folate between 11am-1am depending on lio and breakfast timing, D and K at 5pm, magnesium between around 6pm. While on levo only, remove lio and add in bedtime levo, usually 10-11pm depending on when I ate and other supplements.
Brand I use for supplements are those I’ve seen recommended here. Used to take the Thorne Bs and folate until that became hard to get hold of. Currently using the Think Pink B complex (aware the B6 in this is quite high so make sure to take breaks), Vegavero folat, BetterYou D and K oral sprays, and magnesium glycinate now Time Health but have taken Calm mag citrate powder in the past but don’t need the effects on digestion anymore. Have also used BetterYou magnesium flakes and lotion at times when I’ve struggled with timing around other meds and supplements.
All to say I know my vits aren’t looking great at the moment but it’s been a very consistent labour over the years. As has the timing of levo, making sure I was taking it optimally with water only, 12hrs away from contraceptive pill and ultimately removing the contraceptive a year after starting levo. I was consistent on brand. Tried everything to make it work and I just got worse - hence introducing the lio and the thought now being that perhaps my conversion is good but I became by some mechanism hypo on a cellular level. I have tested with high testosterone previously which I think can impair how the body uses thyroid hormone. Part of the reason for seeing the endo is also to rule PCOS in or out but because of the interplay between testosterone and thyroid hormone it’s a one thing at a time job. Although my understanding of the relationship between the two is limited so if investigating and resolving PCOS could be a factor then I can look at pushing that on!
It was you who said you didnt have problems converting. It might have been the vitamins that were lacking on Levo? So FT3 results always looked good?
Sorry if I’m not explaining well. I was trying to answer your question If you convert well then why are you taking T3? Just to clarify, I do seem to convert well, ratios always good on bloods, FT3 and FT4 always within a unit or so of top of range when I got into the higher dose. For some reason, levo doesn’t suit me and resolve all of my symptoms. But taking lio has provided better relief, albeit now more complicated.
Re: vitamins, they were certainly lacking to start with but I fixed this within a couple of years of starting levo so I don’t think this was the issue in the end. I had about 3 good years on levo with decent vitamin levels - the odd minor drop to suboptimal vitamin levels but never back into deficient and always remedied as quickly as I could. I also didn’t find that those few changes to vitamin levels had a noticeable impact on how hypo I felt. I just always felt hypo and worse the longer I was on levo.
I'm afraid so, in fact leaving it 8-12 weeks even when you're close to being optimally replaced is better as numbers are still settling at that point.
Unfortunatelydon’t think I’m close to optimal at the moment but will definitely revert to 6-8wks for testing for now and adjust up to 8-12wks when I’m feeling a bit closer, thank you.
Keep changing dose and symptoms will never settle. Have to give everything a lot of time.
Appreciate this. Have been quite reactionary this year, particularly the last 6months basically running from feeling over medicated.
Your supplements would have stayed the same so all the more important when making dose changes to maintain vitamin levels.
Noted. Now I’m back on them again I’ll be sticking with them til optimal.
Just to say high testosterone is common in PCOS, in untreated/poorly treated hypothyroidism it’s often low.
PCOS diagnosis should generally be made via bloods(testosterone raised and lh/FSH ratios inverted…estrogen dominance is always common…but not always)trans vaginal scan and symptoms too. But having said that each PCOS woman is unique and doesn’t always tick every box.
Thanks for setting me straight. Whole new area for me to research!
My oestradiol when tested is really quite low. Was meant to be at its peak given where I tested in my cycle but it was 173 (151-1461 PMOL/L). Think when I’m next in touch with the endo I’ll see if we can get started on looking into it, although given I seem to have acted too quickly recently I’ll need to be careful about adding another element into the mix!
No worries, I’m no expert and still learning but I know a little!
It would defo be a good thing to rule out! Low estrogen levels can also happen with PCOS (mine are ‘in range’ but low in range!) I believe it’s a bit less common but is more likely if you’re slim or have had very few/no periods. I don’t know your age but menopause could also possibly be a contributing factor?
I think it’s okay to work on thyroid and female hormones together as they all impact each other and rely on each other
Feels like the more I see about PCOS the more I realise it’s basically any combination of any symptoms. Hormones are baffling! 😂
Useful to know though thank you. Strangely though I am very much not slim (haven’t been since thyroid was a factor) and always have a period. If anything, historically I’ve had too many too heavy periods!
I guess it could be very early menopause but I’m only 35. Mum and maternal grandma both also hypo and both didn’t go into menopause until into 40s so loosely expecting similar. Also showing no signs of stopping periods. Have had a slightly longer cycle when under medicated recently but very much within the bound of what I recognise as the affect of being hypo on my periods.
And that’s reassuring! I’ll see about getting the ball rolling 🙂
Deffo eager after 7yrs of being diagnosed. More than anything this year I’ve been hitting over medicated and unable to stand the anxiety, panic attacks and rapid heart rate so it’s all been very reactionary. To my detriment but I couldn’t have stuck out sometimes up to 4 additional weeks with more lio ploughing in!
Why were you put on levo with subclinical hypothyroidism? Just curious as most doctors want the TSH above 10 and free T4 below range before prescribing levo.
What were your initial symptoms that led your doctor to prescribe levo?
What are your antibody levels now?
People with subclinical hypothyroidism have been known to be able to come off thyroid hormone replacement altogether in some cases. I am not saying you should go off thyroid hormone replacement, just wondering why you were put on it in the first place?
I got really lucky and saw a GP at my surgery who asked about family history (both mother and father diagnosed hypo, sister had rheumatoid arthritis at the time so autoimmunity present, since diagnosed hypo as well) and based on that ordered antibody tests. I also had a goiter and when tests came back positive, she was of the mindset that it would only go one way so, since I was already symptomatic (all the classics - extreme fatigue, weight gain, irregular periods, neck pain, constipation, cold, high lipids etc etc etc) she agreed to start me on 50mcg levo. More than anything, it was just an incredible stroke of good fortune to get in front of the right doctor quite early.
So ultimately no, I can’t come off hormone replacement as my thyroid is very much dead or dying.
Thyroid peroxidase ABs 119 kIU/L (0-34) at most recent test. This is very typical for me - steadily over range for many years but no absolutely outrageous numbers. I feel like I’ve had flares over the years where I might have tested higher had bloods been run.
But very aware I am an outlier in getting diagnosed with the numbers I had!
It is reassuring to know it’s not just me. Think it can feel quite isolating when you’re surrounded by people in generally quite good health. And then to be in a position where I’ve kind of messed it up further for myself somewhat! Thank you, it’s much appreciated.
Hi and so sorry you're feeling so poorly. I recognise some of these struggles myself. I have autoimmune issues as well as hypothyroidism. I have two suggestions, one is that if you are struggling to tolerate x medicine, for me it's adrenals complaining. I would support these with an adrenal cortex supplement and also I'd say try pregnenolone too. Start low and slow 🙏 pregnenolone historically was used to treat rheumatoid arthritis and is a precursor master hormone to the cortisol and sex hormone cascade which if you're in perimenopause could help. Your body is stressed and is telling you loud and clear!Also I figured out that the pink tribe b complex doesn't have the best form of vitamin b6 (pyridoxine rather than pyridoxal 5 phosphate) so I switched to Thorne basic b, may not matter but it's something to consider 😊
Could well be a stress element to it, it has been a stressful few months in terms of life events. I’ve got the recovery time now which has deffo helped.
Don’t think perimenopause is a factor currently - I’m 35 and not seeing any cycle changes that don’t immediately follow / look like that I expect from med changes. Historically I’ve used adrenal glandulars and they’ve worked pretty well. Interestingly not had the usual symptoms I get related to cortisol but very believeable that it’s out of whack at the moment. Maybe time for a test!
Thanks also for the mention of the think pink Bs. I used to favour the Thorne ones but found they’ve been hard to get hold of recently. Perhaps I’m just missing the restocks!
35 is definitely not too early to be in perimenopause nowadays.
Also, as you mentioned being on the pill, there is a good chance there your own sex hormones have been messed up and what is most likely is that you are progesterone deficient even if your oestrogen is testing low. Contraception unfortunately is one of the really bad triggers of hormonal imbalances, including thyroid.
Stress added to all this sounds like a recepie for a hormonal disaster, which seems you have been experiencing. IF your nutrients are dropping without supplementing I would also wonder about your general digestion and absorption?
Fair enough! I've been working on the assumption that I'll likely follow the pattern of my mother and maternal grandmother - both also hypothyroid. They went into peri / full menopause in their 40s. I know some of the symptoms have crossover with hypo symptoms but as yet I've not experienced anything different or worse than the hypo feeling I've been very familiar with over the last 8ish years.
Yes, was on the pill for quite a long time - put on it because of issues with period in my teens. I now know the symptoms I was experiencing back then are classic PCOS symptoms but I never had any hormonal testing done so don't have a baseline. Been off any kind of hormonal birth control now for around 6/7yrs.
And yes, stress definitely a factor. More than anything I think the persistent stress of being unwell over the years is a very bad baseline. I've been doing everything I can to limit it as far as possible but of course there are unavoidable curve balls in life!
My nutrients have always (well since hypo diagnosis) dropped without supplementation - but then I believe that even while medicated I've often still been hypo which I know can have an effect. That said, I've always seemed to absorb my thyroid medications quite well so I don't know whether the absorption mechanisms are different, or is it possible that I can absorb the nutrients but not use them?
Hi, well I take the Thorne Adrenal Cortex one which I like because it's just the glandular and no herbal additives which can have variable effects in some people so I keep it simple 👍
I can also add to this. I've used both the Nutricology adrenal cortex and adrenal gladular over the years. Both seemed quite gentle and also no herbal additives like in Adrenavive. Link here: yourhealthbasket.co.uk/prod...
One thing to note is that Nutricology is the commercial facing brand but there's also Allergy Research Group brand which I think usually is available to practitioners. As I understand it, they're the same product, just different branding so, when ordering from the site above, sometimes you'll get one brand, sometimes the other. Weirded me out a bit to start with but SeasideSusie was very well versed in the ins and outs and set me straight. There might be some posts and comments from her still searchable on the matter
Hey I'm sorry you're feeling so unwell too, I'm in a similar boat. Can I ask why you switched from Levo + Lio to just lio? I'm at a good range in my latest bloods (like you I seem to convert okay) but I'm house bound and feeling really terrible again (neen 18 months of this nonsense trying to get upto a good dose). No room to increase my Levo now but possibly a little Lio?
Sorry to hear you’re up against it too. Of course! Worth saying that I think with hindsight I probably transitioned a bit too quickly really. At the time, I was finding I would add a little more lio, reduce the levo a bit, then feel a bit better for it but by the time I was testing start to feel hypo again. And there was often room in my numbers to allow for it so we upped the dose.
Think my issue was in part not having ever experienced over medication before and also having not felt “normal” for many years. Think I missed the slight jitteriness because I generally felt in better health and I wasn’t getting the obvious symptoms at that point like increased heart rate and anxiety/panic attacks. I thought oh this must just be what functional feels like.
That’s all to say that I think I probably messed it up and wish I’d been slower and steadier about it. I guess you can use mine as a cautionary tale but if you’re still feeling hypo, the numbers will allow and your dose has been stable for at least the usual 6-8wks for testing then trying a little extra might not hurt? Would definitely recommend avoiding the yo-yoing I’ve got into though 😂
Thank you for that, it's so hard hard though when you feel unwell! 6-8 weeks feels like a life time 🫠. Also when you are trying to make educated guesses about what might make you well, then you feel guilty/peed off when it doesn't work. It's taken me 18 months on Levo to 'tolerate' a higher dose, so I'm thinking my body might just need a bit more time but it's more time 'wasted' living no life of it doesn't work. I'm struggling to know when to give up and change course
It really dose. And I’ve been finding it harder to tolerate the wait on the over medicated side compared to the under medicated feeling.
And absolutely. It’s very emotionally and psychologically gruelling isn’t it. I feel very similar to you - there’s stuff I want to be doing and I can feel it passing me by and there’s kind of a grief with it. And yet we must persist!
Absolutely it's grief! I know many of us have lost years and years to this and with no light at the end of the tunnel it feels very overwhelming. I've had some very dark thoughts over the past 18 months. It's only my 6 year old who keeps me fighting some days, I need to be better for him because the guilt is so huge. I find comfort in reading how others have eventually got their health back and just have to keep beliveing it will happen x
Really glad you’re still fighting. I am too but yes, very familiar with that feeling some days where it’s just to hard to face the grind again. Its so important to remind ourselves that a way out is possible <3
I really feel for you. Feeling jittery/palpitations can occur when under or over so not a good guide.. Sweating loose stools are signs of over treatment. Higher temp is too. And of course blood test results. When ure thyroid levels are tested do you test ure antibody levels too? I'm wondering if what's been happening is due to flare ups? This is when the thyroid suddenly dumps a load of thyroid hormones.....usually people often have to reduce or temporarily stop thyroid treatment until settles and then go back in at same dose. After a flare up uktimately you might need an increase. This is not easy.
Thank you. I probably should have mentioned that over the summer I was unbearably sweaty and hot and that accompanied the palps and anxiety. Sometimes loose stool. I spent many days in cold baths just to be able to cope and it’s never been a concern for me before.
I think the major tell for me and why I’m reasonably confident that it is a feeling of over medication is that it follows the intro of extra lio very closely. Eg. When I’ve added 5mcg I start to feel less hypo, and sometimes quite well, over the next few days. Hit a feeling which I think might be close to optimal, then at the 2-3wk mark my heart rate jumps, start to feel anxious. At the point it becomes intolerable, that’s usually when I remove the extra lio and start traveling in the I posit direction - back through what feels like optimal, then back into hypo. It feels like such a predictable pattern but equally I do know I need more of something at the moment.
I test antibodies not every time but every few times usually, aim for a couple of checks a year. Can definitely increase the frequency of this though to see if it might be the reason I’m not tolerating more lio.
Am I right in saying I would probably see a jump in FT4 and FT3 if the dying tissue was dumping hormone? Just thinking that even without an antibody test that might be a clue.
I think it would be interesting to know what ure antibody levels are at the same time as ure TSH Ft4 & Ft3. To compare alongside signs & symptoms. It may give a clue as to whether its a flare up. It maybe this is what's muddy the waters. During a flare up its perfectly sensible to reduce or stop medication temporarily. Other checkers are temperature and pulse first thing alongside pulse rate.
Keeping a log of this alongside signs symptoms uve got plus blood trst results with anti bodies may help.
I would not stop supplements....unless the blood test for them indicates you will be over replaced if you continue.
The recent frequent changing of medications maybe further confusing the picture.
It is certainly not easy to mamage if you are having flare ups.
Funnily enough, I religiously kept a spreadsheet for years tracking daily symptoms, doses and then bloods as and when. I eventually found ti too much to maintain but perhaps it's time to bring it back in a smaller way.
Agree though, definitely think the chopping and changing is muddying things - all very reactionary at the moment!
It's understandable!! Poor you. I had a reaction to a drug that has a very long life indeed and completed messed up my ability to a double and convert thyroid hormones. It's over a year now.....am It's an ongoing saga. I also swapped around at first and every do often fall into the same trap. Thibg is It's frustrating and you just want to sort it!!!
Yeah nothing quite like the desperation to fix it. It definitely drives some questionable decisions 😂 What a palarva getting knocked off kilter like that with another drug though. Really hope you’re starting to get a foothold 🤞
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