Come clean to my gp?

I've been self medicating now for about 9 mths with Ndt.I have not told my gp but have continued to go for the blood tests they offer and according to these test have raised or reduced dose of levothyroxine that I was previously on.Of course I have just been throwing it in the bin!However I feel quite bad for this and my question is ..if I come clean will I still be able to get my bloods done if they know I am taking ndt and self medicating ? (Yes I know tests are not the be all but last time they actually did freeT3)...And ...if I stop collecting my levo prescription will I loose my medical exemption card and have to pay for all other prescriptions I might need sometimes?...Has anyone been in this situation? Thanks

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  • It is up to you what you do but I am sorry please consider NOT abusing the NHS. For the NHS to supply you with tablets, on a free prescription, that you do not use, in that you 'throw it in the bin' does not sit well with me, even if I am fed up with the NHS! As far as I am concerned, this would be totally acceptable if you were throwing away privately sourced meds that you had paid for and did not need but NHS meds - no!

    Come clean and get treated like the rest of us.

    Pesonally, I am struggling to fund my own treatment privately but I would never dream of abusing the NHS by continuing to accept meds I was not using in order to keep a free prescription and blood tests!

  • ajs100uk...Of course I pay my taxes /insurance and therefore i am ultimately paying!...I have also spent an absolute fortune on all kinds of complementary therapies herbal supplements and unlicensed medication to get well over the last 7 years!I think it is in my own personal experience that the nhs has abused me and been of no help or assistance in my quest to get well! I did not want judgement. ..as I said I was feeling guilty about this anyway. .I simply wanted an answer to my question

  • I was not judging! I simply do not agree with collecting a prescription for medication and then throwing it in the bin! That is wrong and goes towards the problem of NHS losing money which ultimately causes them to find other areas in which to save ie scraping T3. We all pay but that does not mean it gives us the automatic right to waste resources.

  • Just one other thought to mentiont is I have refused several medications (that the NHS have wanted to waste money on !) by trying to throw at me which would be totally unnecessary including statins,antidepressants,anti anxiety migraine medications,hrt etc etc all of which would be very wasteful of them as it is not those medications that are needed but optimal thyroid health instead.

  • That is good, I am sure alot of people have said no to taking certain meds, told their GP so, and not accepted a prescription.

    That is not the same as taking your doctor's prescription, filling it, and throwing the meds away in the bin! This must have been what you meant, as the doctor would know if it was just the paper prescription (ie not collecting the medication) as the records would show you had not 'cashed it in' and he /she would be wanting to know why ie the GP would be saying 'why are you not tking the meds I prescribe you as you have not had a pharmacy fulfil the script I gave you?'

  • Don't feel guilty , the NHS is treating most of Easter Europe and half the rest of the world on your money.

  • I thought your comment a bit harsh. The OP is entitled to accept whatever parts of the NHS treatment they deem suitable and to reject others. I don't call it abuse . I do the same . It's called self preservation.

  • I got the impression that the OP was getting prescribed meds, not using them, and throwing them in the bin, in order to continue a free prscription. The OP was concered that by 'coming clean to their GP regarding this, the free prescription would be taken away, therefore by keeping it 'live', as far as their GP is aware, this would not happen.

    We are all entitled to an opinion and mine is that this is wrong, no matter how badly the NHS has treated you (and I am one of those too both as a patient and employee).

    Taking meds and throwing them in the bin is not 'rejecting' it is waste. Unfortunately, this is a typical attitude in this day and age but I was brought up not to be wasteful.

    I believe rejection would be the GP saying to OP 'here is you prescription for levothyroxine' and the OP saying 'no thank you doctor, I no longer need/want etc to take that.' Waste is saying 'thank you doctor', get home throw in bin.

  • I'm of the opinion that misleading your doctor isn't doing anyone any good. If your doctor doesn't want to help you you should find another, then again there's the chance that your doctor WILL help you.

    I personally went through 4 different GPs and 3 Endos before finding one who was happy to treat with t3 or NDT, it's much more beneficial to me to have professional support. For me it's better than having to self medicate and source things without prescriptions.

  • Lozzer66

    "Of course I have just been throwing it in the bin!"

    I hope it's just the prescription that you're throwing away and not getting the prescription filled and throwing the Levo away.

    You risk your GP saying he will have nothing more to do with your thyroid if you tell him. That happened to me when I saw Dr P and took Armour. It didn't help so eventually I went back on Levo and I got my prescription back and was allowed the blood tests again.

    If you feel better on NDT and intend to continue with it, you might be able to persuade your GP to monitor you but be prepared for him not to then you will have to pay for your own tests to monitor yourself.

    Some are more open minded than others, only you know your GP.

  • I collect my levo prescription and have a cupboard full of those tablets. You never know, one day you might be grateful for a cupboard full of out of date Levo. Next financial crisis , we could look like Syria .

  • To my way of thinking, that does not seem the best use of NHS funds.

    I would collect the prescription but not get it dispensed.

  • JS33 in all honesty I have actually thought this about one day this happening! Scarey thought...

  • Just a thought....levothyroxine costs pence it will hardly break the nhs....that's why we can't have the ndt or t3 we want as it is more costly. ..but at what "cost" to health

  • I'm the type that likes to be prepared for all eventualities and hate the fact I'm fully dependent on pills and what would happen if I couldn't get them. I looked into it and apparently the only solution would be eating animal thyroids directly - the fresher, rawer and bloodier, the better ewwwwwwww :-( NDT fresh off the line :-( But there you go, maybe will make you less worried about it lol :-P

    I also have a cupboard of old pills - something might be better than nothing lmao! Bear in mind, I didn't collect them on purpose for this reason, just unused levo from when I was pregnant and dropped afterward :-)

  • The way i see it , I need thyroid hormone . preferably NDT but levo in desperation , to stay alive . Having what is now about 2 years supply in my electric cupboard is fine, if we ever get nuked or some disaster befalls us , I will have time to hunt some piggies ( god bless em )

  • Lol, I'm sure any animal will suffice to stay alive. Yes, it really bothers me as don't produce anything of my own, lets just hope it doesn't come to that otherwise I see a lot of rampaging hypos with a face of a vampire that's just had it's fill with many a pet going missing, love my pets to bits and pieces lol

    Maybe you should ensure are in waterproof container in case of flooding ;-)

  • If we get nuked , I have levo for sale , price 6 eggs and some coffee , preferably radiation free.

  • Well if we get nuked, I imagine everyone in the country will be fighting for the levo as thyroids are the first to go in this situation so I wouldn't make it public knowledge that you have some :-P

    I'm not commenting on the rights or wrongs as there's worse things in life and some people have their reasons or concerns. I think if people felt more secure in being treated properly, this wouldn't happen.

    In my position now with my little one now at school and working, I would admit it to the doctors and get myself tested if they don't want too. A few years ago, when single mum of a baby/toddler and couldn't afford to work because of childcare costs and could barely find scrimp enough money to eat and pay bills and the only xmas presents I could buy relied on how much I could sell the stuff we already had on gumtree or ebay - there was no way I could have afforded testing myself and this concern alone would have made me question whether or not I would admit it to the GPs so maybe I would have made the same decision to be fair. We're all in different circumstances which can make these decisions easier or harder than others.

    And maybe for those particularly anxious about not being able to obtain some in worst case scenarios, maybe this is cheaper than treating the anxiety they might have if not stockpiled in some cases lol :-P

  • Completely understand, it can be hard to understand another point of view without fully understanding the circumstances we can find ourselves in. At age 56 I will inevitably behave differently to how I did at 30, my life,is so different now. I just want to wish everyone well, and to continue the journey to better health.

  • Yayyyyyy party time in JS33's electric cupboard. ...don't take with the coffee though...lol

  • The cost of dispensed but unused medicines costs the NHS £300 million per year. That money could be used elsewhere. Just saying.

  • Like prescribing everyone T3 who needed it for instance.

  • Lozzer66,

    If you tell your GP you are self medicating NDT you won't lose your medical exemption card. It is the hypothyroid condition, not the medication you take, which entitles you to exemption from prescription charges. If you decide not to tell your GP you don't have to get the Levothyroxine prescription dispensed. Just don't take the prescription to the pharmacy.

  • Thanks Clutter that's what I needed to know ..whether it was the condition or the prescription that warranted it!

  • Can I ask where you get your NDT from, do you see a private GP? Or source them online? I'm really wanting to try NDT but not sure where to go for it.

  • Kirstenje. .for some reason I can't pm you ...I would start a new thread by posting this question if I was you

  • For all concerned I have decided to come clean and tell my gp that i am self medicating and if they refuse to do bloods then I will as with everything else pay for them myself ..

  • Lozzer66 Good for you. I did tell my GP that I was going to see a private Dr - I explained that I had been on T4 for over 20 yrs with no benefit - just increasingly debilitating symptoms. The Endo I had seen had helped a little by adding a small amount of T3 to the T4, but that benefit was short lived. The way I put it was that after going through the 'normal channels' (including seeing a psychologist) and still feeling unwell, I had to try something different. I asked him to support me in this. He did say he would. And he did. I eventually ended up on T3...works so much better for me.

    However, my GP retired 18 months ago. The other 'senior' GP is not so accommodating. (Rolls his eyes when I mention 'Thyroid') That said, I recently asked for a repeat prescription with an increase and was given it no question.

    If you can prove to your GP that the NDT is.has been more helpful to you and, perhaps, 'tell' them that you are looking to find something that works better for you as the T4 is not benefitial - and maybe ask for their support (in monitoring you whilst you do this) I don't think they will be too adverse - it will mean that you are not using their budget for treatment for a start. If they are against it, tell them you want to try adding T3 to your meds then....

    If your GP is very negative, do try to find another.

    I'm of the opinion that you have to know what you want, going into the GP, these days (how many have been asked by GP 'What do you want from me today' or somesuch?)

    I also think that if you go in and tell the GP what you want, and back it up with reasons as to 'why', they will struggle to refuse. After all, if they do refuse and it turns out that you needed what you asked for, it could come back to haunt them?

    Do try to keep the GP's on your side, you may need them for other things ongoing.

    Don't tell them you have been binning previous prescriptions!

    All the best.

  • I assume you have just been collecting the prescriptions and not levothyroxine?

    I am not qualified to say but once diagnosed as hypothyroid that would continue for your whole life with the exemption certificate.

    I'd just tell your GP you are now taking the original hormone replacement for treating hypo NDT. He may be unaware of what it is but you can give him a copy of link below and tell him it has been in use safely, without blood tests, since 1892,

    If you've been feeling much better, the proof of the pudding, as they say, is in the product.

    thyroidscience.com/Criticis...

    However the blood tests wont correlate which were introduced for T4 only and yours contain all of the other hormones, particularly T3.

    So if you are taking the very original thyroid hormone replacement, you treat yourself as follows (remembering no blood test were before the 1950's.

    web.archive.org/web/2010103...

  • I think you should come clean, if we do not tell them we are self medicating then the stats they look at will be incorrect. Also if it is not on your records and one day you need emergency help it could be very dangerous not to have a correct record of medication.

  • Hey Lozzer66

    You appear to have been subject to some intemperate and unhelpful opinion on this matter, additional to some good advice. £2.02 a month, assuming you are on 100mcg levo/day, will hardly bankrupt our always on the brink nhs. £3,600 for a single locum shift is probably more likely to lead to its insolvency but that's all academic.

    Trusting this might help, chose a pharmacy and stick with it. I chose a supermarket pharmacy near one of my places of work and asked for a pharmacist consultation. Having explained I wanted a pick n mix fulfilment ( that one, that one, but not that one, thanks...) and being subject to a caution that I should tell my t*t of a GP, 'so that he can monitor your thyroid appropriately...' I told her that I was monitoring my bloods and blood pressure myself, both of which had improved since I started self medication and had an nhs nominated health forum to approach, in addition to my GP (ha!) if I needed advice. She was more than happy to go along with me and gave me her card so that I could pick n mix at her pharmacy counter in the future without eyebrows being raised.

    Incidentally, I have recently been advised by one of the families I'm assisting through bereavement that their aged mother had four black refuse sacks worth of unopened meds in her granny flat as she left this ship of fools...

    I would no sooner 'fess up to my useless GP that I wasn't swallowing his cr*ppy-for-me thyroid meds than I would tell him that I was planning on eating steak and chips with a bottle of red this evening. Clutter is spot on with the reason for your medical exemption certificate and if my experience is anything to go by, your pharmacy will not split on you. Easy peasy and the nhs is a few quid a month better off. Hurrah.

  • Exactly Rapunzel! ...I hope no one is offended by you having steak and chips lol!

  • We expect honesty and trust from our GP's should they not expect the same from their patients. Ok self treat as many do but to string the doc along by accepting prescriptions when not needed is wrong and I wouldn't blame any doctor for being annoyed. Just my opinion.

  • I told my GP who then referred me to an endo. He tried to persuade me half heartedly that levo was better but ultimately supported my decision and I continue to get tests on the NHS and keep my exemption card x

  • I'm not judging anybody, we've all done things which are wasteful. I would probably instead of coming clean say that you don't feel the levothyroxine is helping and is there something else you could try. I've been on prescriptions for years and if I don't need it I just don't order it and it doesn't seem to make any difference. It is there on my repeat if I do wish to order it. If it does get questioned just say you had a surplus or didn't feel you needed it often. You get your yearly review and if you're happy with things it is extended again..

    Just some general advice for anybody who is reading this thread.

    Never throw unused or expired medicines in the rubbish bin or flush them down the toilet. Children or animals could take the medicine from the bin, and medicines that have been flushed down a toilet could end up in the drinking water system or harm the environment. Take unwanted medicines to a pharmacy, where they can be disposed of safely.

    Unused prescription medicines cost the NHS across the UK over £300 million every year.

    £300 million could pay for:

    80,906 MORE hip replacements

    101,351 MORE knee replacements

    19,799 MORE drug treatment courses for breast cancer

    11,778 MORE community nurses

    300,000 MORE drug treatment courses for Alzheimer's

  • ...but no MORE T3 or

    MORE appropriate intervention in the first place for thyroidies.

    I hear you mrp; there are signs such as this at every pharmacy. I'd like to know how those figures have been extrapolated, wouldn't you? :)

    And in the case of the MORE hip replacements, it doesn't add that you have to be bedridden and in agony to secure one in the first place, does it?

    Like government, (don't get me started) ultimately we get the health service we deserve and if we're not prepared to pay for it and do something to staunch the void that Sunonarainyday writes of, nothing will change. :(

  • I would hope some of that 300 mill of unused drugs is Anti depressants people have cashed in and then come to their senses before taking or shortly after - I know I did this once lol. Maybe much of it is stuff wrongly prescribed and people then stop taking it as makes them feel worse and read up on it a little more lol :-)

  • This one always makes me smile as it's merely confirming that the NHS *as it is* is not fit for purpose. Either it can function or it can't. You can't have *more* of something when you already have a free at the point of contact healthcare system, you might have quicker care but of course we already have that as if you can afford it you go private and that takes some of the pressure off for those that can't.

    If you go private then that's on top of your National insurance payments, in effect you're paying twice but if faster treatment is important then that's worth the extra financial layout, we already have a two tier health service.

    In actuality of course you would get neither 'more' nor 'faster' treatment as the limitations are purely of time and space! As the population grows and because people are living longer and taking up more resources, the NHS will either continue to fail or something will have to change.

    However as it is seen through rose tinted glasses by most people and any change is vehemently resisted, then it can only go one way.

  • Although I think the NHS is not in a great state, I definitely prefer it over private health care and it is quite efficient in what thing costs in relation to other health care systems. I think it's been badly managed whether on purpose or not but still think it's a good idea and definitely wouldn't want to lose it. In regards to bad docs, well you get them private or non private lol :-)

  • Within the last two years I've had 3 friends die without even having their conditions treated or even diagnosed properly, I'd call that a pretty big fail.

    One was a 42 year old neighbour from a brain tumour that had been mis-diagnosed by the GP as 'anorexia caused by a bump on the head', 15 months she lasted before dying in front of her husband one evening, he called for the ambulance and I went to help him, they started her heart but she was brain dead, they'd begged for her to be referred. The tumour was huge according to the hospital she was taken to. I might add they'd taken her to A&E a few times and she'd been admitted overnight after a bad fall because she had no strength, still it was never diagnosed!

    Another was an online friend (38) who was diagnosed by a consultant as having fibromyalgia, she too actually suffered from a brain tumour and found out 6 hours before she passed what she actually had. Her young family were obviously devastated.

    The third was a neighbours sister (50 something) who kept pestering her GP that she was losing weight and was chronically tired all the time. She had bloods taken but was told all was fine. She passed just before Christmas 2 years ago at home on her own as she was single, turned out she had stomach cancer.

    My own mother was treated for diabetes for months when she actually had pancreatic cancer, she was given 6 months but lived 18 months. She had a lot of fluid built up in her abdomen so went in to hospital for a routine drain, they drained over 21litres of fluid from her, her weight dropped to under 5 stone (from 9.5 stone) due to the weight of the fluid, she was in chronic pain after they drained it, we asked for pain meds and they brought her 2 paracetamol which she couldn't take as she wasn't eating by then and couldn't swallow. Eventually a jr Dr appeared with a syringe of morphine, he injected her and she fell immediately asleep as they'd not taken into account her loss of weight. She never woke up. TBH it was a blessing for her but even so it shouldn't have happened.

    Our own son found a lump in his testicle, rang the GP for an appointment, told them what it was for and they offered him one in 3 weeks time! This was just to see a GP, let alone getting referred! He rang a private hospital that afternoon, got an appointment the next day for a check, had a scan the next morning and chat with consultant for results straight after. Happily nothing to be concerned about but at £500 the lot it saved weeks of worry! You can't put a price on reassurance.

    These are people connected to me, just how much of this actually goes on? BTW non of them sued as their families didn't think it right to do so to the NHS despite me telling them that they're insured for this type of thing. Imo if more did so they'd have to get their act together, I sure as heck would have done!

  • Words actually fail me..!totally shocking!..Unfortunately I have several similar stories i could cite and I'm sure so has everybody else...yes of course there are also many good stories with positive outcomes but I for one have not heard any of these in a very long time...sadly

  • This made my morning brighter, thank you. I read the OP's comment as meaning they threw the script in the bin, not the tablets.

    Either way if anyone thinks the NHS is organised enough to know whether you fill a script or not then you're very much mistaken and the largest cost to the NHS is the salary of the GP during the 10 minute, if you're extremely lucky, consultation. The only healthy, and therefore working, part of the NHS is the emergency services, the rest is a mess of epic proportion which will never change no matter how much money is poured into the void. I worked within it for most of my working life and the emergency services have to be good to make up for the inadequacies that come before it.

    On a personal note I've not set foot in a GP's surgery for over 20 years, taking control of my own health has been one of the most freeing things I've ever done. Btw I'm on here because of our yd, not me.

    What the OP is doing is making use of the good bit, the blood testing, and replacing her NHS meds with private meds, personally I'd carry on as you are but just not fill the script...mainly because I'm not keen on the thought of unused meds going into landfill.

  • nice one :D

  • Sunonarainyday 20 years without seeing a GP??? Wow, that is seriously good going and take my hat off to you.

    Your post is really interesting and so sad that you've seen first hand the failings of the NHS.

    My current feeling is that I'm done with NHS charlatans masquerading as doctors and being discriminated against for having Lyme disease is the final straw.

    May I ask what "our yd" is?

  • Haha thanks, I've been lucky I guess but I keep a good eye on things myself and try to eat and live the healthiest way I can. Having to walk 8 large dogs everyday helps 😏

    Yd stands for youngest daughter, she's sub clinical hypo so GP won't treat, I've put her on inositol as well as supplements advised on here which might help (she's pcos , not ovulating etc.), tbf she needs to lose weight and is trying very hard, she's 20, her fiancé is 6'2" and eats like a horse which meant she also ate more and piled on the lbs, it's coming off extremely slowly though 😔

    Sorry you've had so many problems, sounds appalling treatment, I'll take a look at your threads if that's ok? xx

  • Sunonarainyday you're clearly doing a terrific job of keeping yourself healthy and it's paying off. That's a lot of dogs to walk but not all at the same time surely??!!

    Must be hard for you to see your daughter suffering with inevitable frustration that the GP won't treat. It's good that you're there to help and advise and for her to trust you which is obviously important. Guessing with pcos it will mean weight loss won't be easy but it sounds as though she's on the right track.

    My posts tend to be a bit ranty I'm afraid, like so many on here I was left untreated for years and had to take matters into my own hands.

  • I haven't read the replies but my immediate response would be don't feel guilty, don't come clean. Look after yourself. Nobody else will. GPs or consultants certainly won't - not educated enough, not interested enough. Play the (useless) system. Use it for blood tests. You need those to monitor your progress. Best of luck. Get better.

  • Just read the other replies out of curiosity. Interesting :)

  • .... for what it's worth I tend to agree, and he's particularly if you have respectfully paid your dues for years, it's not your fault the can't give you what is required to support you, there is a time that you dnt have to be holier than though it's balanced, You don't have to collect the prescription (if relevant, watch the dates If in a stock pile 🤒)

  • Ps has long did it take for tsh to reducepls?

  • How long for tsh to reduce on ndt? ?....I'm not sure seeing as bloodtests aren't that frequent...but it seemed to be more or less within the first few weeks that tsh was less that 1 in my particular experience.

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