So here's a new one, spoke to the blood specialist this morning about munchkins ongoing saga with her levels. He suggested that if she is struggling to remember to have them daily, that she takes 7 days worth once a week? So that means she would take 1,225mg in one day and then nothing until 7 days later. Surely there's a reason it's never been suggested in her 17 years isn't there?
Surely she would just be hyper for a few days and then come down to being hypo?
Thanks for any advice given.
Xx
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Vanessa09
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This protocol is sometimes used, often when a patient is non-compliant or for any other reason they can't realiably take them daily. I think it's usually done under medical supervision, ie they go to the surgery and take their weekly dose there.
Does she struggle to remember taking them? If so there surely can be a way around this - setting an alarm or putting them on bedside cabinet with a glass of water to take on waking or taking before bed providing time gap from food/drink is followed.
Does she live with you? Can you not check that she's taken her daily tablet?
Ah ok, thank you.I don't think she does however her results are continuously saying otherwise. She/we have tried everything to get her to remember - alarm, pill box, bedside table, simply reminding her and me checking daily too but I obviously don't want to do that for the rest of her life, I'm trying to let the lead go abit to trust her more.
There is a lot of talk about her blood not absorbing hence the specialist calling me.
I've said that I will yet again check that she's taking them, get her bloods done in 6 weeks and then move forward from there.
it's an idea that's been around a long time, for use in circumstances of last resort... ie. it's better than not getting any at all , if someone can't (or won't) take it regularly on a daily basis.
Somebody in here was given an absorption tests a few weeks ago .. involving taking 7/10 ? days worth of Levo dose all in one go .. followed by blood testing at then end of the period .
(in this instance it was done to investigate whether the levo was absorbed into the blood as expected when taken under controlled circumstances to make sure a) it was actually taken and b) it was taken in ideal circumstances for absorption ie. on an empty stomach)
The result for that patient was the first few days they felt no difference . ( not feeling overmedicated ). but the last day or so of the test period they were finding everything extremely difficult .. asleep all morning , difficult to rouse for lunch , ate it in bed ,and fell back to sleep immediately afterwards)
I think dosing like this as a regular thing should be very much a last resort if no other way can be found to ensure regular tablet taking.
I'm absolutely certain it would make me feel dreadful for more days of each week than not .
And i really can't see this variation in hormone levels being a good idea for anyone who is already struggling with their health / memory / anything else.
I've never taken such a big dose all at once .. so don't know how that feels .. but i do know how i am impacted if i forget to take even one days dose ..... nowadays i am quite well tuned to my body's responses, so i'd notice by about 2 pm on the same day that something felt amiss.. and realise i'd forgotten. But years ago when i wasn't so tuned into myself ,, what i noticed was that if i forgot one days tablet .. it was a dead cert that i'd forget the next day's too.. because i just wasn't very 'with it' the next morning so my normal morning routine would be a bit flaky.
it's a tricky situation for you . 'not taking the tablets as instructed' is the first assumption that is always made when any unexplained thyroid results are found . it is written everywhere .. in all the training literature/ guidance for the medical profession.
So it is the first thing they always think of .
i've been asked more times than i care to remember "if i was taking the tablets regularly ,, or if i'd misunderstood the dose instructions etc etc " ... and my thyroid bloods are usually boringly predictable ,and i'm a perfectly well organised sensible adult with 2 kids and a bank balance that i manage to organise well enough .. and yet they still think .. "oh, if the result is illogical , she's must just be forgetting to take them as directed".. even though the question has been asked and answered already a hundred times.
But i know perfectly well that i DO take them as prescribed every day.. even when the doc thinks i might not be and can't explain the results be any other means .
But when it's your kid with their own autonomy.. then even you can't be totally sure if she is or isn't taking them .
I know from my own experience that you can take Levo exactly as prescribed , and take blood tests under closely controlled circumstances to make sure the results are comparable to each other .. and still get utterly illogical variations in thyroid hormone levels . So just because her weird results suggest she isn't taking them .. that doesn't mean she isn't .... and feeling like people don't believe you when you are telling the truth is in itself, very damaging .. and quite likely to lead to thinking "sod it ,i really wont take the bloody things then if nobody believes me when i say i do " .. especially in a teenager.
My instinct, like yours seems to be, would be to let go the reins more and give a teenager more responsibility for the consequences of taking it (or not) , rather than less...
if she wants to try the option of weekly dosing on a monday morning , let her try it .... if as we all assume , it feels crap by thursday night and she's an utter zombie for the weekend ... she might decide she prefers daily dosing anyway .... it won't do her any harm to try it and learn about her bodies reaction to it for herself .
i'm trying to remember what it feels like to be teenager , and put that together with what i know about hypothyroidism and being treated by Doctors and having my quality of life in their hands when if feels they don't believe what i say to them anyway .
Humans want independence and autonomy and freedom ( well i do anyway )
Hypothyroidism exerts a control over us that we didn't ask for, and can't ever escape. Doctors/Parents telling us 'what to take' exerts a control over us that we can choose to escape... in an attempt to feel more in control of a condition we have no control over.
If i was a teenager with hypo that was proving difficult to balance, i can imagine i might go through a phase of needing to exert my own form of control over the situation by not doing what i was 'told'....
There is only one person who knows whether she wants to take them and is taking them ... and if she doesn't want to take them regularly she's not going to be able to tell you, because she knows you're worried about her anyway.
if SHE was not certain if she was taking them ,due to being disorganised / can't remember if she had taken that days tablet or not / lost the pill dispenser etc etc ... then she knows there is an element of doubt, and if SHE wanted to make sure she took them every day, she could choose to fix the problem by asking you to make sure she took them every day in case she forgot .
a few years ago ,when I realised that i had become depressed due to hypo having 'taken away' my life .and worse, being at the whim of some doctor who didn't know me at all , who was making decisions based on lab numbers without believing a word i said .... i realised i needed to feel more in control of the situation.. mostly in a psychological sense .. i realised it was MY treatment not theirs .. i realised the decisions were mine not theirs .. That shift in mindset helped me enormously .. and until i made it i hadn't previously realised how much of our autonomy hypothyroidism takes away from us .
if she isn't taking them and is not able to tell you the truth about why she isn't .. then perhaps realising SHE is in charge ,will help with allowing her to CHOOSE to take them .. rather than feel that she 'should' be taking them ?
Sorry if this is a load of waffle .. seemed like a good idea when i started writing it ... not so sure it will come across the way i intended , but i'll post it anyway
Interesting thought. My 18 year old (on thyroxine for the last 2 years) was showing signs of being under replaced so I arranged a blood test. To which the answer was ‘well do I need to go because I haven’t been taking the tablets’. Argh! So yes TSH came back high unsurprisingly. I was trying to understand the mindset so your response is is helpful I hadn’t thought of it that way
Hi Vanessa. I would feel like you in that it would cause hyper and then a big swing low if given all in one go. I'm very sensitive to dose changes and if I was given that amount in one go I think I'd be very ill. I assume this is a tested practice that is known to work but it doesn't sound right to me. If the recipient was elderly or had other illnesses I'd be concerned too.
We've never tried this before and the consultant seems to think she won't notice any changes however I beg to differ. If it isn't a problem to take them all in one massive dose then why aren't you all taking it like that!? Maybe because thyroid conditions vary so much, who knows but as you say, it must've been tried and tested prior to now. We can but try!
This post it was suggested her rash could be linked to various vitamin deficiencies
Recommend getting FULL thyroid and vitamin testing done via Blue horizon
Always test thyroid levels early morning before 9am and last dose levothyroxine 24 hours before test
Make sure she takes levothyroxine every single day for minimum 6-8 weeks before test. If forget one, take it immediately realise. Get a weekly pill dispenser
Here's what @dogenes has to say about weekly dosing:
Weekly dosing
The basic problem is that, to get an average acceptable dose over a week, at first when you take a big dose, you overdose and your body sees the excess T4 as a toxin, and diverts it to reverse T3 which is inactive as regards helpful hormone. The overdose also inhibits conversion of T4 to T3 the active hormone. Then over the week your T4 level steadily drops (half of it lost in 7 days) so that at the end of the week you are underdosed and now are not making enough of the active hormone T3 from it, in sufficient quantity. The need is to keep your T4/T3 level as constant as possible over time, which is what happens naturally.
I realise you can't keep reminding her on a daily basis for the rest of her life, but if she starts taking it regularly, and her levels improve, so will her memory, and after a while - don't know how long it will take, though - it will just become a way of life and she'll do it automatically.
But, are you sure she's not taking it? It's not some kind of absorption problem? Doctors always like to blame the patient for anything that goes wrong, couldn't possibly be their fault, or something out of anyone's control. Does she know she's forgetting it?
The suggestion it isn't being absorbed correctly has been suggested a couple of times but because I can't 100% say she is taking it daily I said I would check on her, get bloods done again and then I can say categorically she is definitely taking it and let's move forward with other investigations xx
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