Sokratis Mourselas of the School of Maths, is conducting a survey for his master’s project, supervised by Richard Booth of the School of Computer Science and in collaboration with Salubrious Ltd.
If you have thyroid disease and are on medication, you are being invited to take part.
You can find more information about the survey here:
cf-my.sharepoint.com/:b:/g/...
If you would like to take part in the survey you can find it here:
I've filled in the study form , showing that i never miss any doses . cos i never miss any doses.
I've only ever missed about 10 doses in 17 yrs, and have always noticed within hours and rectified the situation immediately.
I don't believe there IS a big problem of patient's missing doses of thyroid replacement hormones.
It's just that "check patient compliance" is No1 on the GP's checklist of "what to do if you see unexpected TFT's".......... because they don't know enough about the subject to have another explanation, and have been trained by the 'TSH is infallable' school of medicine.
Well said!
Why is it that thyroid patients are assumed to be non-compliant with taking medication? We seem to be singled out.
I have never forgotten a single tablet. Why the heck would I? I also have to take an anticoagulant which has a short life and needs to be taken at the same time twice a day. I use a phone alarm for those. Never missed one.
It's a ridiculous and spurious argument. We have weird results because we are broken and we need a doctor to use their brains and help fix us. What do we get? A lecture on taking our medications regularly!
They assume this because they are actually told to ....... in the past i've nosy'd around on some GP help /resource sites....If you look up '? confusing TFT's', you find 'check patient compliance' is usually top of the list....... Quite often there is nothing else on the list.........
When I speak to some people, they do tell me that they keep forgetting to take their tablets, sometimes for days. There is also the question of those that have memory problems such as my father. Also, those who have been newly diagnosed often need reminders....
But those are specific and probably predictable, cases, although setting alarms for new medications gets around the "getting used to it" phase nicely. The suspicion seems to be on everyone all the time. If it were dementia medication it would be warranted.
Sorry, just a rant of mine. We get the thin end of the wedge in everything.
Yes i'm sure it is a problem for some, but i worry that a survey like this one will not be filled in by many patient's who always take tablets correctly, and so could end up falsely showing a high proportion of patient's who don't.......... which if you are a cynical old trout like me , you worry it could end up being used as evidence to bolster the incorrect idea that Weird TFT's are usually due to 'non compliance'.
Weird TFT's in experienced patient's are much more likely to be due to....... everything we know here.
So i think it's important that those of us who have not had problems 'being compliant'! fill this in too.
If some people tell you that they don't find any difference when they miss a dose - even for days - it is most probable they don't have hypothyroidism or that they feel so unwell on levothyroxine that they're reluctant to continue to take it.
I didn't find any benefit at all on levo but when some T3 was added to T4 it was the difference between heaven and hell. On T3 alone it is heavenly even if I have to buy my own. I think people who rule that T3 is prohibited should have their thyroid glands removed.
What do doctors know.
I take T3 only.
Doctor phoned after a test to tell me my TSH was too low and T4 too low". I said 'yes doctor' it should be as I take T3 only. He said 'but T3 converts to T4! I said 'No doctor it is the other way around'.
Unbelievable isn't it!
It's because we are given thyroid hormones that don't relieve our condition. It is insisted the levothyroxine alone is the 'Be All and End All' of replacing our hormones. This is T4 alone and it doesn't work for me and makes me far more unwell.
They've withdrawn NDT which contains all of the hormones a healthy gland through would have produced and being made from animals' thyroid glands may be more conducive to many people due to being 'natural' rather than synthetic hormones. It has saved live since 1894 without blood tests but the skill of the doctors in slowly increasing/decreasing if necessary.
They've also now withdrawn T3 - the Active Thyroid Hormone needed in our millions of T3 receptor cells due to its rising cost,
Patients now have no alternative to levothyroxine.
I think I must have run up more expense to the NHS through having to (when initially diagnosed) have more heart checks and vists to the A&E when on levo.
T3 has resolved symptoms but I have to purchase my own due to the withdrawal of it by the NHS leaving levo alone (except if we have an Endocrinologist's authority).
I notice from the first link that the survey seems to be connected to the development of an app to remind people to take their meds.
I know from past experience of trying to keep records that I don't forget to take prescribed drugs very often but I do give up on keeping records very quickly. I wouldn't want an app for this purpose. I would prefer to use just a standard alarm clock of the type found on ordinary mobile phones.
I'm almost speechless!
My thoughts...
A pointless study compiled by people who clearly do not understand thyroid disease....or thyroid patients!
Are we deemed so incapable of managing our own medication?
Maybe we have a poor reputation within medical circles....a target audience!
Blame the patient and suggest that help from this Pillipala thyroid diary will improve their health!
If there is a problem, and yes, as we all know there is, it is not the patients that are at fault - although we must assume there may be a few who miss the odd dose.
If, in fact, that is the correct dose for the individual.
The fault lies, for the most part, with the medics who misdiagnose and wrongly medicate their patients
No "health giving" app is going to overcome this however accurate the timing of the dose.
Do we need an app to (basically) track our behaviour....we have an inbuilt app it is called memory. But yes, it does fail.
Instead we have alarms on watches etc. A
s backup
I used an alarm when my brain was very foggy and when I might otherwise have forgotten to take my meds. I never did!
I have absolutely no doubt that this student seeks to do some good, I hope this study achieves that....
But why single out thyroid patients and their supposed non compliance when the world of Computer Science is full of interesting challenges.
I wonder, which came first, the student with a research proposal or this Salubrious app....
I'm not convinced that it will be - according to definition - "health giving".
It sounds more like a marketing exercise for an electronic device
I'm sure if I've missed the point somebody will set me straight!! Feel free.
Well that rant is maybe more blunt than I intended.....iffy day!
Best everyone
DD
And, to add to all the other very good points that have been made, has it never occurred to anyone that doctors are very much at fault if the patient is non-compliant? How many times do we read on here, people saying that they've no idea what it's all about, the doctor didn't explain anything? It happens all the time. S/He just hands the patient a prescription and tells them one little pill a day and they'll be fixed. No word about how important it is to take that pill every day, and that their lives depend on it. So, many of them end up here, and learn about it all. But, what about all those that never find a helpful forum? That don't realise how important it is to take their pill? The don't miss taking it because they're being awkward or rebelious, but because they just don't understand. Why can doctors never admit any blame for the way they handle things but automatically blame the patient? How about an app to remind doctors to treat their patients like reasonable, intelligent people? I think that would do far more good!
That sounds like a perfect app!
I do hope the person compiling this questionnaire is reading these comments. They will be far more informative than any questionnaire could ever be.
They've no idea of how unwell a patient feels when levothyroxine doesn't suit their bodies. I was shocked when first prescribed (diagnosed myself) levothyroxine and to find that I was so much more unwell than before. They fail to realise that one tablet doesn't fit 'all those who are hypothyroid'.
They ignore all scientific evidence that directs them away from levo only.
greygoose DippyDame
I suspect (but have no proof) that many thyroid patients are considered to be "troublesome" or "heart sink" patients because so many of us complain repeatedly about how we feel due to doctors not knowing the symptoms of thyroid disease, not testing actual thyroid hormones rather than a single pituitary hormone (TSH), rarely testing nutrients, always assuming that within range = fine no matter how close to the range a result is, having absolutely no clue about the long-term effects of under-medication and only caring about over-medication based on an unreliable marker, and assuming that once people are over 50 they don't need much thyroid hormone at all.
Since doctors can never imagine that they could be at fault they will automatically assume that the patients aren't compliant with their Levo or whatever.
in he words of my mother when she was fed up with me ........."AND Another Thing!!!"
............ what is all this stuff about accurate timing anyway? ......
The only thyroid hormone that needs dosing with accurate timing ...... is anything with T3 in it .
But we're not 'allowed' anything with T3 in it by the NHS!?
We're allowed T4.
And NHS say its perfectly practical to give 'non compliant' patients a whole weeks worth of levo on a sunday...... because of it's long half life.
They say if you miss a dose , it doesn't matter as long as you take it later.
(i don't agree with them , but that's a different subject)
I'm fairly sure that any patient who has gone to the trouble or expense of getting themselves some T3 or NDT would already be quite on the case about taking the blumming stuff.
I quote;
" What is the purpose of this study ?
The 'Pilipala -thyroid diary' constitutes an iOS application developed by salubrious Ltd with the intention of addressing the problem of non adherence to medication for people with thyroid or other diseases/........../Some of the most common disorders of the human body are caused by the thyroid gland, such as hypothyroidism, hyperthyroidism, and thyroid cancer. In most cases the symptoms are mild, but if a treatment is not followed carefully , then the implications might lead to serious issues. The treatment involves a specific medication schedule, which has to be followed systematically. It has been identified that a large number of people are struggling to be adherent to this schedule, and therefore are either missing or delaying important doses."
1.If it's for thyroid AND other diseases , how come its called 'pilipala-thyroid diary'
2. "in most cases the symptoms are mild"...... oh really, must just be me then.
3."treatment involves a specific medication schedule which has to be followed systematically"......it's one pill a day...... (as far as NHS is concerned) ......I would have thought that diabetics on insulin would be more in need of help with the schedule.
4."it has been identified that a large number of people are struggling to be adherent to this schedule"..............really ? identified by WHO ?
Where are these guys getting their information on thyroid disease ?
And, where did they learn to speak English??? "struggling to be adherent to this schedule"? To be adherent? Give me strength!
Well, that all seemed a bit pointless. No differentiation between delaying a dose and missing it, and I do sometimes take midday dose late if I'm dealing with a client and miss lunch). Well, I suppose it's for some Apple fan boi, not anyone with any understanding of medicine.
I suspect that most of those who do not take their levothyroxine almost religiously every day do not appreciate why they need to. I really don't see them as likely to download and install an app. Still less, pay a substantial amount for it.
I cannot comment on what the app does as I have not installed it and it wouldn't be fair on the app, the developers, or us to do so.
But just reminding is trivial on most smart phones - even some very basic models can do so very easily.
I have bought myself a Xiaomi Mi Band 5 (think wristwatch device) and connected it to my iPhone. That produces sleep analysis, heart rate recording and analysis, passes alerts on from the phone to the band, records what it sees as exercise, etc., etc.
The physical band only cost a bit more than the annual cost of this app. I paid £25.74. (My old Mi Band 2, which was much cruder, has lasted years).
The upcoming Apple Watch 6 is rumoured to include pulse oximetry on top of everything else previous versions have had. (OK - quite a few years of Pilipala to get to the cost of an Apple Watch.) The older Apple Watch 3 starts at £199.
Maybe if we actually got regular (reasonably frequent) blood tests it would make more sense?
Have now installed the app - and seem to get forced to set up payment and Sign in with Apple - even if I can later cancel. That does not encourage me.
Don't get me wrong - I want there to be a useful, effective, helpful thyroid app. Just not convinced that Pilipala achieves that at present.
Fortunately , i don't have to worry about any of this, since i'm still a confirmed luddite (apart from being a nuisance on here)...... I genuinely don't know what an APP is , my phone is an 1990's Nokia who's only clever trick is 'space invaders', and all my apples are round.
sometimes i still wear a watch, it's got two hands that go round and round. but since i'm still a bit behind the times i haven't yet got the new fangled second hand (invented by Robert James Graves!, yes that Graves) in the early 1800's.
Plenty of room for Luddites. 
An app really is just like space invaders. Something you can download and use. There are at least hundreds of thousands of them around the world so next to impossible to describe them as they do so many different things.
Just in case anyone is at all interested, the Mi Band 5 is described on the manufacturer's UK site:
(As said earlier, I didn't pay as much as their price.)
having just checked out the 'mi-smart-band-5' i'm not sure whether to be fascinated or terrified........ I wonder what the 'idle alert' consists of ......electric shock?
Just a gentle buzz-like feeling in the wrist - it has a tiny motor which makes it vibrate. Very noticeable but gentle. No electric shocks needed!
motors use lots of battery power so that would be ok then .... if i ignored it for long enough it'd run out of battery,so i could carry on being idle.
No chance - battery lasts ages. Unlike most smart watches (think Apple Watch or Samsung Galaxy watches), which only last something of the order of a day or so, the Mi Band 5 lasts maybe 14 to 20 or so days.
Long enough to drive you totally insane!
I decided to get rid of my BT phone line and I now have a top of the range iphone which BT supplied free of charge. It is much cheaper and I can use the internet anywhere in the UK because of BT wi-fi hotspots. Just to add I gave my Dad my older iphone which I used through Tesco mobile.
I haven't even got a mobile phone!
There is nothing worse than being labelled a ‘non compliant patient’ what an absolute kick on the teeth after years of being fobbed on and gaslighted! Every year or 6mths for ten years I’d be crying in the GP room telling them I can’t go on like this, I’m so tired, I feel low, I can’t cope. They’d say my bloods were ‘in range’ or if they were low they’d say I probably wasn’t taking my meds. I’d tell them I was religious about them. I’m I’ll why would I miss the one thing I believe will help.
The last straw was when the pharmacist spoke to me like a child with all other customers around me ‘your GP has asked me to talk to you about how you take your Levo........’ I was shaking with anger! He was arrogant and condescending! I was 44yrs old and being spoken to like a child! (Actually I’ve never spoken to my children the way he spoke to me!)
It was my private Endo that said that most doctors will blame their patients if the desired outcome is not happening. They don’t blame the diagnoses or the prescription, they blame the patient!
Money talks - how much does NOT treating people with thyroid diseases cost the NHS and the country as a WHOLE - please take the survey
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