Fancy taking your levo once a week?

Spoiler alert: doctors are d***s.

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

Okay, aside from LOLing furiously re 'non-compliance' (hahahahahaHAHAHAHhahaha) being the leading cause of lingering uat I did wonder how people who regard themselves as scientists can follow a scientific protocol all the way through their case study until they find themselves perplexed by something... so they simply guess that the patient is lying - ?? Sure why not. Scientific supersleuthing!

(I was particularly aggrieved to read that because I'm nothing if not compliant in taking my meds every single day at the same time every day and I hate to think that my gp is secretly thinking I lie about it.)

Anyway, I was just musing on what might account for the success of the weekly protocol. Could it be that after a massive dose of levo the patient enjoys a nice substantial shot of hormone for a significant time instead of eking it out over the week? Could it be that higher blood levels of levo for part of the week is more therapeutic than lower doses all week long?

I don't know enough about the rise and fall of hormone in your blood to know how it works, but we do know that if you take your dose of levo right before a blood test it can come out high. What if you took your weekly dose and the t4 kept climbing (and converting to t3, which also kept climbing) until some time later in the week, when it began to fall, and the cumulative effect of those 'high' days was more effective than the day-to-day dose?

Anyone want to weigh in on this? helvella?

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  • *Sigh!* I can't help thinking that if Levothyroxine successfully relieved symptoms within a reasonable time frame there would be no patient compliance issues :o I see, too often, patients saying they feel no better after taking Levothyroxine. One can only assume those patients are under medicated or Levothyroxine is not working for them.

  • Yes, there are a lot of folk who say they've stopped taking meds or don't bother to take them properly because they don't help, but what stood out in this paper was that both patients denied being non-compliant but the researchers still concluded that was the reason their health problems were unresolved.

    I guess it makes a change from saying 'There's nothing wrong with you' - ! They believed the patients were symptomatic but didn't believe they took their meds. And while they did seem to believe these patients had unresolved uat symptoms (as opposed to unrelated depression), a possible cause of 'non-compliance' was thought to be mental health issues!

    Levo didn't resolve my symptoms but I carried on complying. God loves a trier! :-)

  • PB,

    If desired TSH level equated to 'feel well' I expect there would be 100% compliance.

    If, as so many members complain, they don't feel any better, and in some cases feel worse, why would researchers and doctors be surprised that patients stop taking their medication?

    15 months of compliance saw me bed bound. I regret it took me so long to see the light!

  • The researchers aren't surprised. They're saying these patients aren't euthyroid because they were lying about taking their meds.

  • PB,

    I don't doubt there are patients who claim they are compliant despite evidence (high TSH) that they aren't. Once x week dosing in front of a doctor may be the only way to ensure compliance.

    I would find it more interesting if the researchers were able to establish why people who presumably felt unwell enough to get a hypothyroid diagnosis and treatment subsequently declined to comply with the treatment.

  • The "researchers" are doctors who treat patients hence the arrogant accusation of non-compliance. The author information states:

    "S Rangan, A A Tahrani, A F Macleod, P K Moulik, Department of Diabetes and Endocrinology, Royal Shrewsbury Hospital, Shrewsbury, UK"

    If the researchers were just research scientists they wouldn't dare put that in a paper for publication or if they did they would be made to remove it by their reviewers.

  • bluebug my thoughts exactly. As I read it I thought, 'Hmm that's not really science is it?' If at the end they posited that one of all the possible reasons these subjects weren't euthyroid was non-compliance but they hadn't done the study in a way where daily dosing was confirmed, that is one possible conclusion to draw but if you can't prove it it's worth nothing.

    Doctors do see themselves as scientists though.

  • While doctors may see themselves as scientists, due to a certain doctor who was struck off, many scientists don't see them as such.

    Anyway the research in this article is case histories. You cannot extrapolate every hypothyroid patient due to TWO case histories but doctors will. This is bad science.

  • Quite.

  • PB,

    I don't think even "scientists" could answer that as all hormones are not only reliant on each other but good health ! ! ! ...

    It is ironic that the secondary conditions of our illness is generally what prevents the replacement hormone from working well in some people.

    Deiodinase enzymes are essential control points that control cellular activity of thyroid hormone in varying body tissues, and it is these that determine our (good or bad) response and unfortunately respond in various behaviours in differing physiologic conditions.

    This is what doctors should be learning......to look at the whole picture and not to dose us weekly like a naughty child, whilst blaming poor compliance on psychiatric disorders of a depressive nature ! ! ...

    Weekly dosing has proven successful for some but for many, those deiodinase behaviours dictate that thyroid hormone needs to be administered in a low & regulated dose, so to umbrella us all would be detrimental.

    Doctors should remember that patients want to become well.

  • Doctors should remember that patients want to become well.

    I agree. But doctors often don't. They think patients want attention.

  • Well of course in the name if science they would ASSUME the patients were lying and did not take their medication rather then there actually being a problem with the medication itself!! And the assumption automatically becomes proof!! Astonishing the blindness that can occur from rigid thinking!! Never ceases to amaze me the arrogance of some!! Frankly if they were sat in our shoes they would realise that NOT taking our medication just isnt even in our thinking si desperate are most people to get well! Lol....

  • Many years ago when I was on Levo only I was under the care of an amazing endocrinologist. I was pretty hopeless at remembering to take my tablets every day and on mentioning this one visit he told me to "work out how many days I had missed and take them all in one go" he said "Levo has a very long half life so it won't harm me if I take them all at once" I used to do this, I think the most I ever took was 5 days worth. , (1000 mcgms) I have to say never once did I get any energy spikes or jitters or any kind of symptoms that would lead me to think I was over medicated, I never felt any different than I usually did taking my dose every day, so maybe a weeks dosing at a time has some merit, I think it would work for my daughter who like I used to be, very often forgets to take them or collect her prescription. I think to do that with Liothyronine that I now use would probably give me a heart attack. But if I was still on Levo I would give it a go...... For sure

  • I use a daily dispenser and never forget. If I did I would realise the next day and could take 2 doses.

  • Oh I never forget now, but I was much younger with three small children and an ass of a husband who's only concern was how my illness would impact his life!!! Since getting rid of the husband most other things have fallen into place x

  • How did the patient feel with their results in the "normal" range. Probably no different but the scientists would be happy. Plus, how long after the weekly dose were the bloods checked because that could skew the results.

    Jo xx

  • Only these "researchers" aren't scientists they are doctors hence their arrogance and getting away with stating "non-compliance".

  • I've had 'probable non-compliance' printed on my thyroid panel blood results in the past! At a time when I was being kept on a ridiculously low dose. But it seems like a similar thing. They don't even consider the possibility that the issue is the prescriber.

  • The lab techs don't know the patients. One one of my full blood count tests I had "drug addict???" on it as they couldn't work out why my white cell count was repeatedly very low. The real reason was on a previous test which had tested everything and it was due to malnutrition.

  • That's a terrible one! All these notes are so morally judgemental, as well. The assumption is that the patient is up to something, rather than that they're sick and looking for help.

  • I came across the blog I contributed to for the late, great Dr David Lewis and this wee gem stood out.

    "Note that in patients on T4 replacement all T3 is produced by peripheral conversion, and so circulating T4 levels may need to be maintained slightly above the “normal” reference range to generate adequate tissue T3 concentrations." maturinuk.wordpress.com/201...

    The one and only time I felt well on Levothyroxine was when I was erroneously taking double my dose, 200mcg instead of 100mcg. Of course, the second our T4 goes over range (and TSH suppressed), we are immediately given a far lower dose and told we'll die of a stroke. Idiots.

  • @LC. Yes, I can say exactly the same thing. During the early days when I was trying to find my correct dose after my total thyroidectomy I had a few weeks on 150mcg Levo - and I felt great! My T3 was 130 (ng/dL?) and I use this as my bench mark for my feeling well. And, of course, just like your experience my dose was immediately lowered and I became sick again.

  • Well if it helps I had a similar experience when t3 was added to my levo and I felt great for months and eventually was found to be a bit over the range for t3. My doctor at the time said because I had been feeling so well I should only reduce very slowly (25 less every other day), which was encouraging, but in fact before I even had a chance to change my meds I crashed and have never felt as well since.

  • I am astounded to see that Dr A F Macleod is listed as one of the authors of this piece of sh*te... He was my endo for many years and during that time I found him to be a very attentive, genuinely caring doctor who put me on T3 when it became obvious that, after over 7 years on T4 alone, it wasn't working. Since 2011, he'd monitored me on a yearly basis and pretty well allowed me to adjust my dosages myself to find the best combination of T3/T4. He retired this year and I was transferred to the care of Moulik (co-author of this article), although I did not see him, but a new endo I'd not come across before. When he asked me why I'd decided to start taking T3 I told him I didn't and that it had been Dr Macleod who'd put me on it, the appointment was over and he told me to come back in 12 month's time... Not exactly inspirational is it?

    However, perhaps it's only fair to point out that this article dates from October 2007... well before he started me on T3, so he may have changed his opinion since then. Certainly when I met him, he never asked me about whether I was forgetful or non-compliant about taking my Levothyroxine.

  • Interesting. Maybe all the doctors participating didn't share the same agenda.

  • Good to hear that whichever doctor you saw had the sense to keep you on the T3 as it had been prescribed by Dr. Macleod.

  • Some months ago diogenes wrote here about the variation in sensitivity to levothyroxine - and speed of conversion, etc.

    I am convinced that even if weekly dosing is fine for some, it might be dreadful for others!

    For example, I am now taking 112 micrograms of levothyroxine a day - and feel distinctly better than alternating 100 and 125. Of course there are several possible explanations but all the way through I have felt that even a slight overdose is very unpleasant.

  • Yes, some people are very sensitive to levo.

    I certainly don't feel like anyone should be compelled to take a weekly dose (in case that was in question). I wondered if for some people it might be legitimately therapeutic when a daily dose was less successful.

  • I'm sorry to cut in on this discussion, but I have a simple answer to the questions implicitly posed about doctors within the post and subsequent text that simply knocks all your arguments into a cocked hat. The answer to the conundrum of doctors' behaviour is quite simple.

    There are three types of doctor. The first and most common type is the Dickhead. This is the type that thinks through the scrotal sac. Be the doctor male of female, because as is perfectly evident, the females of the species, once through the process of qualifying as a Dickhead, must inevitably become like the other Dickheads graduating from the Schools Of Medical Dickheads, and develop a quasi scrotal sack by virtue of proximity. A bit like a bitch without pups developing lactating mammaries when given an unweaned pup to nurse.

    Along with the development of said sack and in direct but inverse proportion is the shrinkage of the part of the brain that governs humanity, from whence the original Hippocratic Oath sprang. Also from a person with a real scrotal sack, but he was probably gay anyway, so his scrotal tendencies were tempered with being in touch with the more intuitive side so often associated with females. (Wrongly, in my estimation. I have met too many human females without a shred of either conscience or compassion.) So thinking through the scrotal sack imbues the so-called thinker with an omniscient belief and Ptolemaic conceit that emerges thus: "I am God, I know all, I am right, you are wrong therefore you are either mad, lying or just plain inferior." Culminating eventually in any and all forms of behaviour from the Dickhead towards, and conversations with, patients who refuse to get well, in the medical equivalent of "F*** off."

    The second type of doctor is the Nazi. Similar to the Dickhead but with the added bonus of being sadistic. This type buries their mistakes and malpractice and is rarely caught, unless the mode of death is too obvious and too frequent. Not to be confused with the psychopath, who deliberately kills off nuisance patients or those of whom certain aspects are found offensive.

    The third type is an old breed and now, sadly, very rare. These are called TRMs, or The Real McCoys. These are men and women who retain a vocation for healing and alleviating suffering that is lodged in the same neural network in the brain as from whence the Hippocratic Oath sprang. These are men and women who can listen not only with their ears, but with that strange and elusive quality that is sometimes called intuition. They do not rely on computers or blood tests, seeing these intrusive forms of measurement as either an adjunct or a distraction.

    TRMs retain a skill that the more modern Dickheads and Nazis have lost. That of diagnosis. Their ability to orchestrate their scientific understanding with this elusive quality of intuition, along with skill and experience and a dash of humility gives rise to the alternative moniker of Diagnostician.

    But, like a rare and unusual example in any flock or herd, they are often mercilessly and persistently attacked by the rest of the flock or herd, and either pretend to be Dickheads and shrivel or die an untimely death. Alongside the creeping infection of the medical-test virus, this means that the Diagnostician is a very rare type indeed.

  • I couldn't have put it better myself. Well done.

    Jo xx

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