Placebo Thyroid medication

Hi everyone,

I read on the internet that 97% of GP's give out placebo's at least once a week. I found this quite shocking. Does anyone know if GPs and Endos give out placebo thyroid meds and if so how can we tell if its fake? My T3 comes in a plain tablet bottle and when I collect it from the chemist, it only has the chemist sticker on it, whereas the T4 comes in bliser packs that have the logo all over them. Sometimes, I have been given T3 in a plain tablet bottle. Can placebos come with a brand name all over them.

Thanks

31 Replies

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  • I would think that's complete rubbish, and would be totally illegal - unless you've signed up to a specific experiment/trial. I've been on t3 for over ten years and I would know immediately if there were no t3 in it as I am very sensitive to the ups and downs of it and have never come across one that didn't work (unless maybe it had fallen out and sat at the bottom of my bag for an unknown length of time and took in emergency lol)

  • Anyway, it's the pharmacies that give them out not the GPs so they would have to have some sort of code or (P) in brackets on the prescription to inform the pharmacy to dish out the fake ones lol!

  • and it if helps you worry less, all t3 comes loose and are not blister packed so the pharmacies have to count them out and will put them into clear bottles whilst counting. My last dose actually allowed them to just give me the original sealed tubs they come in from the manufacturer and was just given those but i imagine they will now have to start counting them out again as they will have to split open the tub to give me the right amount

  • Not so.

    The only packages that Mercury Pharma liothyronine is supplied in are 28 tablet container packs. It is not supplied in bulk packages at all.

    See section 6 of Patient Information Leaflet here:

    medicines.org.uk/emc/PIL.24...

    In my view, everyone who is prescribed the standard 28 tablets (or multiples) should get the product in its original package. No decanting should be allowed.

    If that is not happening, demand it when you present your prescription. (Not when you go to collect. Only fair to give them a chance to do what you ask.)

  • The liothyronine that I get is 28 tablets, tho, I have never ever received it in its original packaging. Thank you for that information, it's very useful to know. I never questioned anything, just accepted what was given to me.

  • Sorry I meant they were giving me six container packs of 28 up til now - I didn't mean bulk anymore than that. I have reduced my meds to a dose where they will have to split open a pack as otherwise can't give it to me. I was on an uneven dose before and they used to do that?? But maybe the rules have changed now as was a couple of years ago but they used to open them before I went onto a dose where they didnt have to

  • I ask the pharmacist to NOT decant t3 into clear bottles ,as I like to see expiry date and info on original tub they come in.

  • Actually, thats a good idea, as I would like to see the sell by date on T3 like I can with the T4 that comes in blister packs.

  • I was under the impression that prescribed medicines in the UK always had to have an expiry date shown somewhere, and that giving out a Patient Information Leaflet (PIL) was obligatory.

    I did once get given a bottle of loose pills without a PIL and the pharmacist was extremely apologetic about not giving me a PIL. She said under normal circumstances she could print one off for me, but her printer wasn't working.

  • Pleased to hear it.

  • I think the OP means this study - nhs.uk/news/2013/03March/Pa...

    In the study 97% was for impure placebos e.g. actually gave other medication including that were there was no evidence it worked. So if a GP decided T3 didn't work but still prescribed then according to the study criteria that would be considered an impure placebo.

  • Sometimes I am given a PIL but other times I am not. I have never questioned it or even thought of aksing why. The only date on the T3 bottles is the date that they print the label.

  • Not only should you be told the expiry date, but the batch number as well. If there was a problem with the medicine, those details would be needed to trace the source! It's appalling that pharmacists are so lax about such things, there's no excuse for it.

  • Completely agree RedApple.

    Zero. Nil. Absolutely NO excuse.

    Always, always ask (if needed) for a PIL and the batch number and expiry date in writing. Even if you know where to look on the internet, or have a previous copy, you should get the one that came with the product or, at worst, a specially printed copy.

  • My prescription was due yesterday and the same as last month, they could not get the mercury brand. I asked about the online pharmacy option but they didnt really know what I was talking about, but I will speak to my gp practice about that. I then found another chemist, a local indepdendent one which do stock mercury so that was good :-). So, I have all the T4 I need. And, they had to order the T3, so I rang today and asked if it was in and also if I could have it in it's original packaging. They mentioned that the original container does not have a child lock, but I explained that thats not a problem for me (I have no children, have a cat instead and they are kept out of his reach). So, will have it in its original packaging sometime today. Thank you for your help

  • If you want to find Patient Information Leaflets in the UK you can use this site :

    medicines.org.uk/emc/

    It doesn't let pharmacists off the hook - they should be supplying PILs anyway. The fact they can be read online is NOT an acceptable substitute.

  • Yes, thats the one

  • I distrust doctors quite a bit but this would be truly shocking if they were doing this.

  • Doctors often prescribe things not really believing they will make a difference, and that will count as placebo. But, except in medical trials, you will never be given an inactive substance purporting to be a real medication.

    Furthermore, in the case of thyroxine its effect is measurable in your blood tests, so you can be safe in the knowledge that you are getting what was promised.

    Distrust/suspicion is a clinical symptom of hypothyroidism. And fearing that you are being duped to the extend of fraudulent medicating by your doctor would count as quite extreme in my book. Do you have recent blood results? Because I am wondering if you are under medicated.

  • That is reassuring to know. Yes, I do have recent blood results and they were all ok. TSH suppressed as I keep it that way because I cannot function otherwise and T3 and T4 at top of range, but even with those levels I still have chronic fatigue and other hypo symptoms. I have a printout of them somewhere.

  • Then there is more going on! Not helpful, I know. Have you looked at Adrenal fatigue, other AI diseases, diet?

  • I had a Short Synacten Test done about 2 years ago - was told, all normal. Diet is not too bad, am vegetarian (though, I could never give up chocolate), am incorporating some gluten free things into it like pasta. I dont eat much bread at all as dont really like bread, and do get my 5 a day in. And, also I excercise regularly, yoga, pilates and gym.

  • The short Synacten Test will only show an abnormality if you are close to death! What you need is the Geneova 24 hour saliva test, which looks at the level changes throughout the day.

    Your diet sounds likely to be high in carbs. I went ketogenic 3 months ago and am better in so many ways. Not as easy when veggie, but possible. Look at vegetarian keto diet.

  • The nhs testing seems to be a waste of time as it would be too late by the time anythings shows up - I had the Short Synacten done on the NHS. They dont seem to detect anything early. I think that my diet is probably high in carbs and also sugar too, though, I only drink the innocent smoothies so that there is no added sugar. Thanks, i will look those up

  • Innocent smoothies may have no added sugar, but they are still loaded with sugars! In fact most fruit is full stop!

    I was a sugar addict extraordinaire. I would eat it from the packet - at my worst I would simply pour it into my mouth. Until a few months ago I could eat a whole Plain Bounty without noticing until I found the empty packet in my hand! Once I had made the fatal decision to 'treat' myself (what interesting terminology!!) the result was inevitable. I KNEW it was harmful, but could never get through a day without a fix in some form. Then I did a herbal candida cleanse and within two weeks I was able to avoid sugar. From there I started reading into low carb diets and eventually ended up doing the keto diet.

    Yes I did eat Christmas cake over the holiday, once I had one slice the rest of the story was rather predictable. But I stopped as soon as I got home, and will not be making another, ever! It brought back all the bloating reflux and wind, and generally made me feel horrible, no cake is worth that!

    You could potentially have Candida. The later stages of systematic candida have all the same symptoms as hypothyroidism. Tests are unreliable again, with lots of false negatives and conventional doctors not understanding candida anyway. Here's one article healdove.com/disease-illnes...

    You could also (or instead, not required to have both) have parasites.

    mindbodygreen.com/0-11321/1...

    My guess is that our compromised stomach acid lays us open to parasites and candida because they aren't killed off in the stomach as they should be.

  • Looking at the link, I would say that I am a stage 4. I lose count of how many chocolate bars I eat in a day. I managed to cut out coke and lucozade, but due to fatigue am back on them as craving the boost in caffene and energy - mmm, not good at all. Have eaten 7 or 8 choc bars today alone, thats without the large smoothie and a bottle of lucazade 500ml. Thats just so far

  • Right, well you clearly need to look into it in more detail. Here's what I wrote to someone else about a month ago. Bits in square brackets are today's updates

    Yes, ketogenic diet is essentially what Jason Fung advocates - so until you know what you are doing, you need to count how many carbs you are eating. I try to stick to 20grams a day, and don't top 30 except on disaster days. He also advocates fasting, but I have only gone one day beyond 24 hours. I rarely bother with breakfast, and lunch is usually mid afternoon so I end up eating in a six hour window, or so.

    But there is a back story. I posted about my peculiar poos (and I think you commented!) and candida. Once I had got about half way through my candida cleanse, my sugar cravings vanished and then I was able to stick to sugar free. From there, over a few weeks I gradually cut down on carbohydrates generally, first the high carb foods like spuds and rice (already gluten free so the rest wasn't that high anyway), then middling carbs like carrots and fruit. Now I only eat leafy veg, green beans, cauliflower/broccoli and protein and fat obviously. I aim at normal protein, and do not limit fat - I'm not deliberately eating more fat, but I am putting butter on veg, and making sauces with cream (no thickeners, you see)

    I am losing weight, and more importantly all sorts of other things are improving.

    [BMI down from 28 to under 25, and more to go. I can pull size 12 jeans down without undoing them]

    Skin - except for when I iced the Xmas cake I won't be eating, my sebhorrhoeic dermatitis is pretty well gone. No spots, nails seem stronger

    Digestion - no heartburn, constipation which has been with me all my adult life is resolving despite lower fibre content, no wind

    [No burping, no farting, no gastritis]

    Energy - up

    Sleep - is good as long as I maintain my electrolytes. There's not much natural salt in a diet devoid of carb heavy foods! I wake up in the morning awake. If I wake in the night I can barely open my eyes a crack!

    Headaches - not a single migraine!

    [Anxiety - I used to be a serious worrier (as diagnosed by a psychiatrist no less! Now life is so much calmer. I no longer wake in the middle of the night in a panic. If something stressful happens I deal with it and move on. How cool is that?]

    There's more, but that is enough for me! I am not diabetic, or even pre diabetic but that sugar consumption would surely have taken me there in time.

    It is, of course, quite extreme. And its taken me a while to get my head properly around it. There are all sorts of foods that are off limits, and convenience food is pretty well impossible. But then it doesn't take much effort to throw a chop or three under the grill. You can make quite a lot of bready things using ground nuts, but they aren't the same, of course!

    The big downside really is that there is little hope of going back to normal eating. Does that matter that much? Not really, my hope is that eventually I will be able to eat relatively normally in social situations, but if we don't have starchy stuff at home it really doesn't matter much. And of course normal eating is what got me into this mess in the first place! [Actually, having eaten forbidden foods at Christmas I probably won't bother in the future. They weren't anything like as nice as I imagined, and then it was difficult to stop. Sugary stuff has been hoofed out of the house now]

    To understand what happens when we eat sugar and refined starches, read Dr Jason Fung's 'The Obesity Code' or his blog free, but not as well organised at intensivedietarymanagement.com or anything by Gary Taubs.

    The candida cleanse I used was from Humaworm.com

  • Thank you so much for all that. I will have a look at the webside about the candidia cleanse as well. The first thing that has to go with me is the fizzy drinks. Combating them will be a real acheivement for me. I lasted a month without them, but the last few days I lapsed, though I have none in now (as finished the last bit of lucozade for breakfast as I barely wake-up otherwise, which is not good), so wont buy anymore of them. I had a look online at the low carb high fat diet for vegetarians and there were some really nice options on there, though others I will need to adapt as dont like yoghurt (but I can substitute that) or any salad with dressings. I tend to be a very plain eater anyway and very fussy with it, but my weaknesses are pasta (gluten free) and potatoes, and chocolate which I really need to address.

  • Yes I've been diagnosed with gestational diabetes and we have been told not to eat more than 3 portions of fruit a day. That isn't great if you are veggie. Also avoid blended fruits as the process they go through in blending makes it effect our blood sugars pretty much the same as white sugar. It's actually shocking the amount of foods that contain sugar though. Sauces, breads allsorts so it's so easy to go over and not realise it.

  • If you have diabetes (gestational often goes away, but rarely for ever) then you MUST read The Obesity Code by Jason Fung.

  • I will thanks. I do suspect I had signs of it before pregnancy but because the range they use for gestational is much lower I would be classed as pre diabetic after pregnancy. I really need to change things permanently I know.

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