Hi,Took 125mcgs levo for yrs, reduced early Summer as over felt medicated..GP reduced it to a 100mcgs but altho bloods were ok I felt dreadful...so since Aug have been taking 100/125 mcgs on alternate days ie average 112.5mcgs daily...I will book a blood test soon but am thinking I should book it for 24 hrs after taking 100mcgs not 125mcgs as that would show my bloods at their lowest...mb flawed thinking?
Went GF a few yrs ago as result of advice here, best thing I ever did but recently have eaten quite a bit of gluten ( I know...stupid) ..could someone remind what gluten does to us re thyroid function..does it impair fT4 to fT3 conversion?
I always do bloods first thing in morning. fasted and 24 hrs after last dose.
Im still feeling rubbish on 100/125mcgs..but ENT are sending me for a brain MRI to exclude acoustic neuroma so mb just worrying about that.
Appreciate any advice, thank you
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Gluten doesn't do anything to t4/t3. Gluten can cause leaky gut so affects absorption. Also, when the gliadin part of gluten breaches the protective barrier of the gut, and enters the bloodstream, the immune system attacks it. Gliandin is similar to thyroid tissue so when the immune system has finished with the gliandin it may then go on to attack the thyroid if you have hashis.I agreed about measuring 24hrs after your lower dose.
instead of taking 100/ 125 alternate . i prefer to cut a 25 in half to take 112.5mcg everyday as i find it a bit unsettling to take different doses each day ~ i just think it makes me feel a bit generally rubbish to alternate doses. (and it also means i can't get confused about what day it is)
So , even if you don't do this all the time and are happy to alternate . you could certainly do it for a couple of days before testing ,, then you know you'd get the average level.
I also split it am / bedtime .. which although it 'shouldn't ' make a difference ,,, i personally think it can in some of us . The thyroid doesn't naturally give us one single huge dump of T4 . it gives us a fairly even spread over 24 hrs with a bit more over night in response to circadian TSH peak .
My advice to anyone who is still feeling crap on levo , is try taking an even dose every day rather than alternating ... and also comsider a few months trial of am / bedtime split dosing .. both are a worthwhile experiment.
split dose really helps me, I sleep better and occasionally even make it through a whole night, more so recently after last dose increase 🎉 (celebration)
I'm really good about alternating..I have a "chart" on bedside table to tell which dose to take ( thats nurses for you 🤣). I did try splitting the 25mcgs tablet but despite razor blades, pill splitters I ended up with a crumble! I recall being told that the drug might not always be evenly distributed thru the tablet so I was worrying that somedays I might be taken more or less than I thought..as in one of my half tabs might not have 12.5mcgs..if only could get 12.5mcgs that were n' t Teva...Im not sure if I understood about timing..did you mean swapping from morning to evening? ? Or taking half in morning and half at night?? Happy to try anything..I have to take mirtazepine at bed time..its sedating so I cant take it at other time - not sure if ok to take sametime as levo? I feel worse as day goes on by mid afternoon feel dreadful...would that be worse if Im taking levo at night?..I know, impossible to know..just have to try..
Can I ask about timimg of blood tests when doing PM levo..and what has improved for you with change of dose time please? 😊
I think tattybogle meant splitting the dose to morning and night, I take 25mcg at about 10.30pm bedtime and 100mcg at about 7am. I’m not sure how it would work with mirtazepine. I know some people split morning and afternoon when they have night meds. Hopefully someone who does this will answer 🤗
Thank you! I realised after that was what tattybogle may have meant after I sent!Providing it was ok mirtazepine wise I wld def be up for trying that..if its ok to ask what umprovements did you find with the split dosing and does it affect timing of blood tests?
I found I sleep better, and I seem to last through the day better somehow. Early on in my dose increases, quite a few months ago now (75mcg) I was getting a bit hot and sweaty/jittery at midday. (My vits weren’t optimised and leaky gut not resolved back then either, so lots of possible culprits). Splitting the dose stopped that, so back then I did 25/50 then on 100mcg I used a pill cutter and did 25/75 and now I’m 25/100 just done first week of this and feeling ok so far, early days. Will test in 6 weeks and see where I am with it. 😊
RE how to split a tablet .. healthunlocked.com/thyroidu... this post was enlightening.. and surprisingly works very well ... (personally i just bite them more or less in half with my front teeth and put the other 'half' back in the foil until the next day , but then i'm a philistine not a nurse )
I don't worry about an accurate split either for size , or for the distribution of drug within the tablet ... it could perhaps cause issues if you split loads of tablets all at once .. and ended up taking all the 'fat' halves on week and all the 'thin' halves the next.... but if you only do one at a time as needed and take the remaining half next day, then at worst it can be no more 'unbalanced' than alternating would .. and that's highly unlikely.
12.5mcg tablets would be handy of course . but currently they are charging about £13 a pocket as opposed to about £1 for all the other sizes.... so even if there were any that are not TEVA .. the cost might be ridiculous .
yes, i meant taking half my dose morning and the other half at night... not possible if you need to take other things at bedtime though . so maybe you can't try that ..... probably not worth splitting dose unless it's simple to find a time to take your other half of Levo that is consistently away from eating / taking other tablets ... i always eat dinner about 6/7pm .. and so i'm happy enough to take Levo at about 11/pm midnight without worrying that i'm compromising my absorption of it .
Honestly , it's hard to be specific about the benefits .. years ago i experimented with taking half at breakfast and the other half at 2 pm , because i was crashing at about 4 pm every day. and i had to drive to get kids from school.
I did genuinely think it helped at the time .. i did it for several years .. then at some point i stopped bothering when i learned how long the 'half life; of levo was ,and decided i'd probably just been kidding myself . Hard to say if stopping this felt worse as i was going through menopause when i packed it in .. so everything was pretty messed up anyway.
But this last year , i've been doing it again , but this time with the other half at bedtime ... it was purely an experiment based on somebody else's theory that having an unnatural high peak of fT4 once a day , might possibly contribute to our TSH being lower than it would be with a more natural distribution of T4 over 24hrs.. Anyway the upshot is... i have felt increasingly better over this last year ,,,, so well that i'm not inclined to change back to single dosing to confirm the experiment Over the years i've learned to trust my instinct more about what feels best , over what the book says ' should' or 'shouldn't' work .....same as i've learned to trust my sense that TEVA makes me feel naff.
I'm on 112.5mcg because 125 was possibly a tad too much ,and 100 was clearly not enough. I take 50 mcg when i wake up and 62.5 when i go to bed.
(I take them both with tea .....i was diagnosed in my 30's and decided there was no way i was waiting an hour for a morning brew for the rest of my life .... But i do it consistently , so if there is any effect of reduced absorption due to tea or milk ,it will be same everyday and my dose has therefore been adjusted over time to compensate for this)
The reason for "Levo 24hrs" advice is to avoid the high peak tha occurs between approx 2-6 hrs after ingestion of a full daily dose ... when splitting dose we have already significantly reduced this peak .... so i just take my bedtime dose as normal .... then delay the morning dose till after blood test.
Whatever testing regime you come up with , Keep it simple, then it's more likely you'll manage to do future tests consistently.
Plenty of us nurses are philistines!! I have no quibble with biting in half..if it works then it works is my motto ! I completly get what you mean about fat halves etc...I think at end of day its whatever works for us and what we have trust in. I also have a cup of tea about 30/45 mins after my levo..and like you I slways do it do redultscare level.playing field...I saw Prof Toft several years ago and his view was that it didnt have that much effect..his words not mine!
It will be intrresting to see my results as I have always been v. sensitive to small changes...I felt overmedicated the last yr on 125...lots central chest pressure..100 I ground to a halt...now been on 112.5 since Aug..no thyroid blood test yet..but chest discomfort, nausea,no appetite and heart rate dropped to 36 for a couple of mins recently..ecg clear..need to make appt for TFTS
Thank you...due to work my evening meal can be erratic so I think I willbe best to levo in AM and MTZ PM.I had bloods taken last week but didnt include TFTS...my heart rate dropped to 36 for 2 mins..felt like death...too fed up to argue about TFTs but will go back to get them done..they did a few tests inc ecg (normal) but because of Christmas Im unsure exactly what was done..
My ferritin was 80 something in Summer..post meno so assume same...B12 was 500 ish then.
Hba1c in 30"s
Vit D..I take 400iu daily.
I have been Gf but last few weeks have eaten quite a bit of the stuff..I know it was stupid ..I am wondering if that might be the reason I now crash in afternoon with chest discomfort...I will post my next TFTS when I get them
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