ADHD healthcare in the UK is very hard to come by. You can only get It on govt insurance (NHS) basically via something akin to a loophole (Right to Choose), and the prices of private relative to median wage and disposable income render It inaccessible for most.

To put this into context for non-brits I was diagnosed in January after around a 10 month wait after my GP referred me, and still waiting on titration, I was quoted a waiting time of 6 months, and I’ve been following up every month since through every contact form available and still no sign of when this will be okay. I work in the tech sector (software development company) as a mid-level cybersecurity engineer. My salary is in the 70th or so percentile for the UK, and paying private would easily take a quarter of my disposable income after rent and bills.

It sucks to see how people just suffer endlessly waiting. But there is a way to have your cake and eat it too and its called self-medicating. It’s not a perfect solution but we don’t live in a perfect world/system, and for me the benefits to life quality make the hassle well-worth it.

However I was banned by /r/ADHDUK when someone asked whether self-medicating was a good idea and I responded with a list of pros and cons in what at least I thought was an extremely sensitive, dispassionate and balanced manner, and the thread was locked shortly after, with the mods lock comment putting in a final word that self-medicating is “always a bad idea” - a narrative that seems not at all accurate in my view.

To my shock though this didn’t seem to be just a case of power tripping mods, but an overwhelming community consensus as well.

Coming from the trans community where self-medicating to transition is arguably almost more common than receiving genuine medical care due to various failures and malice on behalf of the government and the healthcare system in the UK, I am somewhat shocked people had such a negative view of even the idea, and that it seemed fairly common even across the ADHD space as a whole. Honestly I started self-medicating about as soon as I put the referral in, I knew I had ADHD, the diagnosis etc. is just hoops for me to jump through.

So I’m curious what is the outlook in this community? Positive? Negative? Neither? What do you think of self-medicating and why?

  • shani66@ani.social
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    30 days ago

    As long as you know what you’re getting into i don’t see the big deal. Doctor aren’t some higher beings, hell a lot of them are idiots, you don’t need a fancy piece of paper to understand a science (let alone a niche as small as medicine as it’s applicable to you specifically). Just put the legwork in before hand and you can probably even do minor surgery on yourself just fine.

    Although this does not comment on the legality of substance that would be used for that, the law has no baring on right and wrong.

    • StoneyDcrew@lemmy.world
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      29 days ago

      Doctor aren’t some higher beings, hell a lot of them are idiots

      What? How do you have this take towards one of the most important and respected jobs in the entire history of mankind? Self-researching/medication isn’t going to be comparable to a trained professional. Especially since they have extra resources specifically for medical research.

      Sure, Doctors are only human and make mistakes from time to time, but there is a strict vetting process (that isn’t simply “fancy paper” as you put it) that only the most competent doctors are allowed to practice medicine. And a process to arrest them for malpractice if they fail afterwards. Without context of adhd, it reads like an anti-vaxer justifying the use of oils.

      Medical advice should always be sought for these issues. If you didn’t trust a specific piece of medical advice? Get further medical advice i.e a second opinion.

      If you need urgent help? Ask your doctor what can be done while waiting for your diagnosis.

      There is absolutely no reason to think that the human body (esp. The brain) is simple enough that a layman can do it.

      These are addictive substances with potentially dangerous side effects requiring specific doses and ongoing management. I’m on elvance and I needed to make sure my blood pressure was suitable before starting and then later going to a higher dose. People could be hurt, or killed with the self-medication advice and that isn’t a risk I would consider acceptable.

      • LainTrain@lemmy.dbzer0.comOP
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        29 days ago

        How do you have this take towards one of the most important and respected jobs in the entire history of mankind?

        Most people in this profession couldn’t give a better assessment than an unplugged sega genesis.

        Self-researching/medication isn’t going to be comparable to a trained professional.

        Yeah, but not the way you meant it. It’s usually better to research yourself. When it matches I’m actually surprised they got it right. Never been wrong yet.

        Especially since they have extra resources specifically for medical research.

        Patient-facing doctors and those who do research are two circles that do not overlap. The patient-facing people only do research to see if they can deny you treatment based on race/sex/(insert immutable trait here) or how they can otherwise jerk you off until you die or leave to save on the budget.

        but there is a strict vetting process

        Universities are privatized degree factories. It don’t mean jack or shit.

        that only the most competent doctors are allowed to practice medicine.

        Makes me wonder what the rest must do to get rejected.

        And a process to arrest them for malpractice if they fail afterwards.

        Good luck proving any of that shit in court or having the money to against unions that protect them like the cops.

        Without context of adhd, it reads like an anti-vaxer justifying the use of oils.

        Thats the thing - they are justified to distrust the medical establishment and approach it with extreme skepticism. They’re just wrong because they’re elderly rightoids who fall for the same pill mill scam but by Alex Jones instead of big pharma.

        Medical advice should always be sought for these issues.

        That’s not true. If you want you can seek it - but I don’t think it should be a requirement or even the default recommendation. What you should do depends.

        If you didn’t trust a specific piece of medical advice? Get further medical advice i.e a second opinion.

        Maybe in the US it works differently, but this isn’t possible in the UK. You are simply discharged if you disagree and further referrals are blocked. There is only one semi-functional non-provate ADHD service. Doctors will often actively try to sabotage your care for disagreeing with them.

        If you need urgent help? Ask your doctor what can be done while waiting for your diagnosis.

        Yeah he’ll say “have you tried not being sad. Also maybe stop being transgender/black/woman.” That is if they respond at all, usually it’s just silence, or being told to fuck off and wait.

        My life won’t pause itself. I’ll never get those years of waiting back if I wait. Or I can just do what I know is right and what I know helps and bypass this circus of drug gatekeeping.

        There is absolutely no reason to think that the human body (esp. The brain) is simple enough that a layman can do it.

        And if a layman can’t do it, a doctor is even less likely to.

        These are addictive substances with potentially dangerous side effects requiring specific doses and ongoing management.

        Nah. Just Google what amfexa doses are there, pick lowest, eyeball napkin math it out to match it’s racemic Amph equivalent, wash the amph, put into capsules at desired dose and take it. If it works - great, stay at that dose until you no longer can, then increase or tolerance break.

        If it doesn’t work - try more, but first make sure you’re eating/drinking/sleeping well.

        If you increase dose too much you waste money and ruin tolerance, so just don’t do that. Amph physical addiction is very weak, you will feel sad for three days, as long as you understand there is no rational reason and it’s just a chemical imbalance it’s very easy to override the feeling. Mind over matter.

        Take 5-HTP (standalone, not Amazon supplement diarrhea suprise shit) and L-Tyrosine to mitigate withdrawal somewhat (this is broscience).

        I’m on elvance and I needed to make sure my blood pressure was suitable before starting and then later going to a higher dose

        *Elvanse. And yeah this is obvious enough. Before taking a substance you Google what side effects it possibly has. Lisdexamphetamine (Elvanse) raises your BP. So check your BP before starting. My BP was actually out of spec due to a faulty reading (I find those fucking things extremely uncomfy) and the docs didn’t even bat an eye before approving me. Now I’m doing my own research. Heart rate also worth checking. Use a pulse oximeter. Cheap and easy/quick to measure. If you want continuous monitoring (to e.g. pick up something that happens briefly) use a Fitbit. It’s not accurate but it will give you general trends. E.g. my heart rate goes up during come-down. Something doctors don’t do. First gen versa is nice and stylish.

        • StoneyDcrew@lemmy.world
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          29 days ago

          Most people in this profession couldn’t give a better assessment than an unplugged sega genesis.

          Oh? Care to back that up with evidence?

          And if a medical professional would give poor assessments what makes you think Billy-Bob with a 9 year old smart phone can assess him self better? If Billy-Bob does it wrong he could hurt himself or make his mental health worse.

          Yeah, but not the way you meant it. It’s usually better to research yourself.

          What? There is nothing wrong with with researching symptoms yourself, but to think you are more correct than a trained medical professional is insanely egotistical.

          When it matches I’m actually surprised they got it right. Never been wrong yet.

          “they got it right”? Ah, I see your issue. You are going to the doctor to confirm your biases and get treatment for it, not to get their professional opinion.

          If they don’t agree; "can’t believe they got it wrong. They’re useless. " If they do; "hey they got it right for once. "

          You are one of the people that I feel aren’t fit to self-diagnose. Your symptoms could have been autism, bi-polar, or various other conditions. Could have even been a combination. Convincing yourself it was 100% adhd is reckless and should be tempered by an outside opinion.

          I’m not sure where this lack of respect comes from. if you are in the UK like me it probably stems from the lack of funding for the NHS leading to “revolving door” Quick assessments as they aren’t able to spend the proper time going through everything. I have my own gripes with the NHS but I trust that the qualifications they have makes them more specialised in dealing with my health than I or the average person.

          Patient-facing doctors and those who do research are two circles that do not overlap. The patient-facing people only do research to see if tpsychosisdeny you treatment based on race/sex/(insert immutable trait here) or how they can otherwise jerk you off until you die or leave to save on the budget.

          “Deny treatment”, huh? Sounds like someone self-diagnosed and demanded medication and the only professional in the room wasn’t having any of that shit. How are they supposed to trust what you say your symptoms are when you are clearly biased towards what you think you have, you’d look like an addict trying to get a fix.

          I doubt bigotry is involved, but if it was then you could easily get a solicitor involved and he could help prove that you weren’t reviewed fairly, by having a second doctor examine you and comparing that to the original.

          Regarding research, doctor regularly attend medical conferences and research treatment options throughout thier career as medical sciences advance. You don’t stay a doctor otherwise.

          Yeah he’ll say “have you tried not being sad. Also maybe stop being transgender/black/woman.”

          If by “have you tried not being sad” you mean they suggested the usual rounds of meditation, exercise, diet, etc then that is perfectly normal to do and shows proven mental health benefits.

          Maybe they offered anti-depressants/anti-anxiety to help cope? My GP did (as I had a report from work that suggested that I’m showing signs of depression) but I said I would rather a mental health specialist assess the symptoms as they can overlap with adhd and I want a fair assessment for when they do.

          I seriously doubt they mentioned race/etc.

          That is if they respond at all, usually it’s just silence, or being told to fuck off and wait.

          This part I can sympathise with. I waited 4 years for adhd to get treatment and I needed to chase them for updates every step. It’s frustrating, sometimes I feel like they are throwing pills at me and throwing me out the door hoping this time it will improve. (though in a way that’s really the only way it is done right) I wish their was more monitoring/reviewing of treatments, but I am perfectly fine with their knowledge on the subject.

          I attribute this to a lack of funding and a huge waiting lists rather than simple negligence. There simply isn’t enough budget/enough doctors/enough time to give everyone the time they need.

          That said; as frustrating as it is, that is no excuse to recklessly/stupidly to self-diagnose and self-medicate. Doing so invites health risk that I’m not comfortable with people taking.

          My life won’t pause itself. I’ll never get those years of waiting back if I wait. Or I can just do what I know is right and what I know helps and bypass this circus of drug gatekeeping.

          Waiting sucks I know. If that is unbearable then seek private treatment. If that is not an option then wait like everybody else. Until funding improves that’s what we are stuck with. This “circus of drug gatekeeping” is there for a good reason, and it is because a layman is not a good judge.

          And if a layman can’t do it, a doctor is even less likely to.

          Wait, are you seriously claiming a doctor has less knowledge than a layman? Really? 8 years of studying to somehow know less than the average person?

          Going to assume you are being hyperbolic rather than actually believing this. It’s one thing to be frustrated with the current system; it’s borders on conspiracy theories thinking they are all incompetent for no good reason.

          Nah. Just Google what amfexa doses are there, pick lowest, eyeball napkin math it out…

          This is insane. No one should be doing this, least of all people with mental health issues. There are MANY steps that allow human error to mess things up. Messing up the measurements via simple misreading of a decimal is a simple one that could get someone hurt, and maybe even killed. The LD50 is only 96.8 mg/kg from what I found. If you don’t know what LD50 is without Googling what it is, then stop immediately. You are not anywhere near informed enough to be doing this.

          Phycosis is a also common side effect of its misuse. And I’m not convinced anyone doing this would have sound judgement.

          Letting someone decide their own dosage for an addictive drug is also a recipe for disaster.

          There is no sane professional that would consider this bootleg treatment safe enough to match commercial treatment.

          If you aren’t stopping immediately, then at minimum don’t spout these dangerous ideas that could get someone else killed.

          • LainTrain@lemmy.dbzer0.comOP
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            29 days ago

            Doing so invites health risk that I’m not comfortable with people taking.

            And who the fuck are you to decide for others what is and isn’t a risk worth taking?

            If that is unbearable then seek private treatment.

            “Lol just be rich, no problem”

            If that is not an option then wait like everybody else.

            Ah yes the good old British tradition. Wait meekly in the queue. Know your place. Let your teeth rot due to executive dysfunction.

            Y’know when I started I had a problem with that. First ever dentist appointment after meds I was told my gums receeded due to my lack of brushing prior as a result of ADHD. Not something I’m proud of.

            My teeth were fine but that’s because I don’t eat baked goods or sugar very much. Gums, again, not so much. Second appointment, some months into meds? Gums were no longer receeding. Even the professional clean was far less bloody than the first time.

            If I had “waited like everybody else” who knows, maybe I’d be missing teeth by now as a 26-year old woman. Thanks darknet amphetamine!

            Oh? Care to back that up with evidence?

            No, just personal experience.

            And if a medical professional would give poor assessments what makes you think Billy-Bob with a 9 year old smart phone can assess him self better?

            So far I have been better so it’s that.

            If Billy-Bob does it wrong he could hurt himself or make his mental health worse.

            Same applies for a doctor.

            but to think you are more correct than a trained medical professional is insanely egotistical.

            Believe me I didn’t start off with that assumption. I came to it gradually after 10+ years dealing with the NHS nearly constantly.

            Ah, I see your issue. You are going to the doctor to confirm your biases and get treatment for it, not to get their professional opinion.

            Their “professional opinion” is just a confirmation of their biases. That said just like mine I don’t place zero value on that, I take it into account, but I don’t rely on it like gospel.

            If they don’t agree; "can’t believe they got it wrong. They’re useless. " If they do; "hey they got it right for once. "

            You are one of the people that I feel aren’t fit to self-diagnose. Your symptoms could have been autism, bi-polar, or various other conditions. Could have even been a combination. Convincing yourself it was 100% adhd is reckless and should be tempered by an outside opinion.

            And says who? You?

            For the record I was never 100% convinced, and still am not, that:

            1. ADHD is even real
            2. I have ADHD
            3. It is not in fact a combination of ADHD and any of the above

            But I’m not an idiot, I can look at the symptoms checklists and see that it’s not autism or bipolar that’s the primary issue.

            If anything the thing that convinced me most was the fact that the meds helped as much as they did when I tried Amph on my own prior to getting a diagnosis at all.

            I’m not sure where this lack of respect comes from. if you are in the UK like me it probably stems from the lack of funding for the NHS leading to “revolving door”

            I wish this was true so I could get the stuff I know I need and bypass them as much as possible.

            What does lead to this lack of respect is every experience I’ve had, through all the dismissiveness and the inherent need to get as many patients to fuck off as possible to shorten waitlists.

            I trust that the qualifications they have makes them more specialised in dealing with my health than I or the average person.

            And I don’t.

            Sounds like someone self-diagnosed and demanded medication and the only professional in the room wasn’t having any of that shit.

            This is projection. I have no need of doing this when I can acquire any drugs with next day delivery without groveling before so-called professionals.

            How are they supposed to trust what you say your symptoms are when you are clearly biased towards what you think you have, you’d look like an addict trying to get a fix.

            They already don’t trust me or anyone for that matter.

            I had strep throat once. It was so bad for a week I could barely eat, speak or sleep, and constant fever. Instead of being prescribed antibiotics I was told it can’t be strep throat, I’m probably just exaggerating (read: hysterical). I was told to take some paracetamol and rest. As if I hadn’t been doing that already.

            I knew it was strep because I googled for 5 minutes or so.

            Several more phone appointments and my constant pestering they gave in and prescribed some anti-biotics.

            Cleared up in a few days. What’s funny is that paracetamol didn’t actually help at all with the pain, nor did ibuprofen, all it did was in my feverish haze I accidentally took one too many in an effort to have the absolute max dose possible, but was lucky enough to suffer no ill effects, only Ricola actually did help me, but I guess that hasn’t come up yet at all those conferences they’re supposedly attending.

            I’m just glad I didn’t end up like this kid: https://news.sky.com/story/amp/boy-died-from-sepsis-despite-four-visits-to-london-hospital-in-a-week-inquest-hears-13196518

            Or this kid’s story I found while looking for the above article. Only what, 3 months apart?

            https://www.bbc.co.uk/news/articles/crgg6e0p3e6o

            This tracks with my experience.

            I’m sure we’re all just addicts trying to get a fix though, right?

      • shani66@ani.social
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        29 days ago

        Plenty of people in every profession are idiots, doctors included. They are no more special than mechanics or programmers.

        The ‘strict vetting process’ is only a method of keeping the supply of doctors low. Literally, that isn’t conspiracy. Edit: although that is a u.s. issue specifically.

        This in no way sounds like anti-vax rhetoric? Doing actual research and doing something that doesn’t affect others is literally the exact opposite of what those people stand for.

        The human body is just another machine. You can learn it as easily as you can learn how to fix whatever horrible sound you engine is making. The only advantage a doctor has over a layman is more direct access to resources (both knowledge, as in easy access to research, and tools, such as blood tests), but that doesn’t exclude a random from using those resources themselves.

        • StoneyDcrew@lemmy.world
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          29 days ago

          Plenty of people in every profession are idiots, doctors included. They are no more special than mechanics or programmers

          Firstly:Those two professions are also skilled and a lay man should not pick up. A bad mechanic causes car crashes, a bad programmer causes security issues. Maybe for minor things like weird car noises, or maybe installing a mod for a game would be fine, but comparing medication to weird car noise is not comparable.

          Secondly: it takes 8 years to become a fully fledged doctor and one of the the most competitive jobs to go for, and for good reason, as it is people’s lives that are at stake. They maybe idiots in other areas, like can’t cook or bad at spelling, but they are medical professionals and it is their job to ensure your safety.

          If you are going to be constantly state they are just as incompetent as the next guy you are going to need evidence. For that to be the case.

          The ‘strict vetting process’ is only a method of keeping the supply of doctors low. Literally, that isn’t conspiracy. Edit: although that is a u.s. issue specifically.

          I agree that this isn’t acceptable, but I’m struggling to understand how this supports your argument? you think the doctors they pick for that “low” numbered group is just as incompetent as the people they didn’t pick? They are picking the best/more professional doctors from the lot and the rest don’t make it or try again another time.

          This in no way sounds like anti-vax rhetoric? Doing actual research and doing something that doesn’t affect others is literally the exact opposite of what those people stand for.

          Anti-vax see themselves as doing “Actual research” and that doctors are “idiots that don’t know what they are talking about” (or corrupt). That all they have is a “fancy bit of paper”

          They don’t understand how dangerous ignoring medical advice can be because they don’t know enough about the science behind it and think their research online is sufficient to keep them informed.

          The human body is just another machine. You can learn it as easily as you can learn how to fix whatever horrible sound you engine is making.

          Then why does it take 8 years minimum to study for it? Even if it was “horrible engine noise” kind of fix unless this would be 100% accurate of the time, it can potentially break the “car”.

          If it is so easy to get into the profession then go become a doctor and save lives. Should be easy to beat those “idiots” you seem to be implying are rampant. After you’re a doctor I will put a bit more weight into your opinions. Especially the one were some doctors can be idiots.

          The only advantage a doctor has over a layman is more direct access to resources (both knowledge, as in easy access to research, and tools, such as blood tests),

          Wow, almost made it sound if those things were easy and not important at all.

          but that doesn’t exclude a random from using those resources themselves.

          Sure, technically. In the sense that every random person has a chance to go to medical school.

          Not everyone can pass medical school. Definitely not everyone should.

          But unless you are 100.00% confident that not a single person would be negatively affected by self-medication instead of doctors advice (or even absence of advice) then your energy is better put to complaining that there aren’t enough doctors to meet demand rather than trying to advocate they can be substituted with sufficient Internet research.

          • shani66@ani.social
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            29 days ago

            You really have issues, my guy. Your obsession with authority is something you should get help shedding.

            First and foremost, yes a layman should pick those jobs up. It’s not difficult to get the basics down and to safely work on things. Ffs sounds like you are terrified of even changing your own oil. i don’t expect people to swap out their own engines or build their own OS, but plenty of ‘advances’ knowledge can be learned in a week and be useful.

            Secondly; the reason it’s competitive is because the number of doctors is artificially lowered by government intervention, not most people failing out of school or some shit. It’s also common knowledge to anyone who has ever worked in or adjacent to the medical industry that plenty of people in it are complete morons; hell there is a worryingly high number of anti-vaxxers even! Which i didn’t appreciate you comparing me to, jackass.

            The lay person can have access to plenty of research materials, they just aren’t bundled in a major network, and many tools that you’d need to watch out for in self medication are cheaply available from smaller clinics.

            • StoneyDcrew@lemmy.world
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              29 days ago

              We both “have issues” its why we are on the adhd community. But “Obsession with authority”? Hardly.

              It’s a healthy respect for a profession that takes a lot of hard work and talent to get into.

              All you’ve done is complain they are “stupid”, they only reject treatment due to bigotry, that an average Joe can somehow compete with 8 years of dedicated study. That universities are “degree factories” All without proof as if it is self-evident.

              This isn’t healthy scepticism, it’s borderline conspiracy theory territory rooted in mistrust for the establishment. You are trying to shoot down my arguments by stating the whole system is corrupt and cannot be trusted. To me this blind mistrust mirrors the anti-vax sentiment. if you don’t want to be compared then don’t go implying that the whole medicine industry is out to get you.

              There are idiots in every profession. What’s your point? That doctors would need to be idiots too? Maybe, but the difference between other professions would be overwhelmingly on the smart side of things. Also; Doctors could be idiots but that doesn’t mean they aren’t specialised in their fields. I heard it is not uncommon for a doctor to have difficulties with taxes or cooking, but that doesn’t necessarily translate to bad medical practice, because if it did, they couldn’t be doctors as they would be kicked out. Bad doctors happen, sometimes human errors/mistakes happen, but not at the rate that you can disregard any medical advice from them.

              You would need a better “proof” than that if you are going to prove that most doctors opinions are not to be respected.

              Basics are not enough to do advanced work. Practicing medicine is probably one off the most advanced work you can do.

              Regardless if the number of doctors is artificially lowered or not; It’s still competitive. Meaning higher quality candidates are a survival pressure. So unless you got some more conspiracy theories for how a “moron” is picked over a good doctor, then there is no arguing that the majority is qualified for the position.

              A lay person is not trained to research. Not taught on critical thinking skills, not trained on symptoms to look out for, heck some people don’t know how to use a computer. They shouldn’t be given the chance to hurt themselves through silly self-medication advice and shame on you for encouraging it.

              Hell it is even recommended that doctors do not self-diagnose, and they certainly are not allowed to prescribe themselves class-B drugs whenever they want. No way a layman should.

              If a medical professional doesn’t trust his own bias to cloud his judgment, you shouldn’t either.

              “He who represents himself has a fool for a client.” this same principle applies to medicine as well.

              I hope you stop self medication, and seek proper medical advice. However we both know your stubbornness won’t let you. Even if a registered doctor came in this forum to convince you it is dangerous you would ignore him. regardless of what qualifications the person convincing you has you would stick to your opinion.

              This is particularly frustrating to me as from my point of view you could hurting yourself slowly, both mentally and physically, and I worry this is affecting your life in ways you can’t objectively see.

              I can’t stop you from doing this to yourself, but I can ask you to stop giving this advice out to avoid other people hurting themselves.