ADHDUK - For All Things ADHD in the United Kingdom

Please post all of your frustrations, wins, concerns regarding medication shortages, on this post please.

Whilst the mod team empathises, and experience this personally, when every post is regarding specific shortages, it clogs up the feed and means other people may not get their posts seen.

This megathread allows everyone to share their problems in a singular space.

Any posts relating to shortages of any medication, will be deleted and OP asked to post it as a comment here.

this is specific to psychiatry uk but welcome to hear ppl’s experiences from other services.

i got diagnosed with ADHD (inattentive type) last year and i’m going through the last few weeks of titration.

i know there’s a lot of overlap between ADHD and autism but the more i research and examine my own behaviours, i feel more certain that i also have autism or at least have a lot of the traits. has anyone else suspected they also have autism after being diagnosed with ADHD? i never really brought it up with my psychiatrist or GP because at the time, i was more sure i had ADHD and didn’t know much about autism.

and have you pursued a diagnosis with the same service who diagnosed you with ADHD? how did it go? do i have to do the same thing i did when i pursued an ADHD diagnosis (e.g speak with GP about concerns, get asked to be referred to a specific provider under RTC and go on waiting list from there?)

the only reason i want a diagnosis is for validation. in a nutshell, i’ve always been weird i guess socially and have been called ‘autistic’ by certain family members. a diagnosis would get them off my back and help explain to them (and myself) why i am the way i am.

I know its silly, and will be anti climactic, but im shitting myself thinking about taking it. Anyone else in the same boat? Can we virtually hold hands?

it has been a mess for AS LONG AS I CAN REMEMBER now, probably a couple of weeks, i do believe it is cause of anxiety also i struggle with low motivation so i haven’t done as much of the stuff i SHOULD DO (improve arabic skills, get back into my laptop but i’ve been struggling to change the password and finger id doesn’t work…, etc!) i have the app bettersleep which i use as a tracker (free version) sometimes i can be asleep for 3 hours other times 13 😵‍💫 if you guys have gone or been going through this, what would you do?

I (16M) have a lot of symptoms of ADHD and have spoken to my mum about getting a diagnosis but I’m pretty sure she thinks I don’t have it. And now I’m wondering if there is any point to get diagnosed. I’m nearing 6th form/college now and tbh I’m not seeing a point other than closure to get diagnosed or at least tested so I could really use some advice: are there any benefits to having been tested/diagnosed or should I just leave it. (I’m ngl I do wish I had tested earlier so I could get extra time on exams, but atm I’m just not too sure.)

Edit: update just spoke to my mum and she said we can get a Start on it and talk about it. Thanks everyone for the help!!!

What do you use instead? I really don't want to go down the medical route.

If money wasn't an object (reasonable, not millionaire but enough to pay for certain regular treatments/things that help cope) what would you use? Like therapy or meditation or something?

If you're not using medication what do you currently do?

i have been diagnosed with ADHD since around last July, and i went through a private ADHD team since i couldn’t wait 3 years for a diagnosis from the NHS. i have been on a stable dose of methylphenidate for 5 months now and i tried to arrange shared care with my GP to change over to NHS so my bills reduce significantly (i pay around £200 a month on the prescription + medication, and it is a huge bill out of my wages).

my gp have said that they don’t like to do shared care with a private diagnosis (even though the doctor who diagnosed me is a well respected doctor within the NHS) and that i should be near the front of the queue and i should just wait for an NHS diagnosis.

first of all, i was told 2/3 year wait for a diagnosis, so i’ll have to pay £200p/m for the next 2 years to wait for the NHS to diagnose me something i so very clearly have, and that’s proven, to move me onto their scheme.

is there any way i can move on to the NHS scheme or have any advice on how to change? or am i just stuck and have to wait until the NHS decide to put me through diagnosis

any advice appreciated thanks

So sorry if this has been asked a thousand times already. I've gone with Psychiatry UK under RTC and have been waiting since early December for an appointment for an assessment. Given the waiting time after assessment for titration is about 7 months with them at the moment and that it has just taken them a month to respond to a message I sent them, I'm assuming I'm going to be waiting a very long time before I get to see any sort of treatment.

I'm thinking of either asking my GP to refer me to ADHD360 under RTC and go to the back of their (hopefully shorter) queue or biting the bullet and going private.

Can anyone help me understand how long after assessment I can expect to wait for titration to begin because that will probably influence my decision?

Didn’t get a lot of sleep last night so this morning was a blur, couldn’t remember if I took my 70mg or not, figured I didn’t and took (another) one.

Now very much realising I took 2. Has anyone done this? 70 is the max dose so I’m freaking out that I’ve taken 140!

i have exams coming up but i’ve been doing titration and the side effects have been making me extremely exhausted which in turn have effected my productivity.

i end up lying in bed most of the day trying to nap it off because i become too tired to do work quite early in the day

do you think a university would accept this reasoning for doing my exams later? by august i’m sure i would’ve figured out the right medication and dosages.

Edit: D&I (/DEI) = Diversity, Equity & Inclusion

Would be curious to know if anyone here is involved in their workplace D&I/ ADHD / related networks?

What’s been your experience being part of a workplace network?

Has it provided you with support for your ADHD?

Have you managed to effect any positive changes for others within your workplace?

I’m asking because I have considered joining mine. However my concerns are:

1. I’m not ‘open’ at work about having ADHD

2. Any previous interaction I’ve had with D&I / ADHD awareness type training has always been negative. I’ve never felt that ADHD as a condition is properly acknowledged; either being grouped in with other conditions/ lack of understanding/ only a space to discuss the positives / ‘tick box’ kind of exercise

3. Communications from the ADHD network in my company are also aligned with my above experience; heavily ‘positive’, which I find quite toxic.

This overly ‘positive’ agenda is what I would like to address if I joined my company’s ADHD network.

But I’m not sure if that would be well received as it wouldn’t fit the narrative.

However, it would help people like me, who presently feel very isolated by not being given a space to discuss our difficulties without the ”ah ah ah, but it’s a superpower too”!

So my 8 year old has been reffered for adhd / autism assessment first appointment in a weeks time . I know there is no diagnosis yet but I’d like to start learning properly how to help him even if it isn’t . Where can I start , what good resources are there such as books , people to listening to etc ?

Hello

I was previously on 50mg Elvanse with a 10mg Dex top up…..till I recently started feeling the Elvanse was wearing off much quicker and the Dex top up didn’t help much.

I’ve now been up’d to 70mg Elvanse and 15mg Dex top up as and when required.

So far, taking the 70mg Elvanse together seemed a bit harsh, so now I take 50mg then 20mg around 3-4 hours later, which works better.

I’ve not needed the Dex top up so far during the day, however as I work shifts (days nights), I do struggle a bit at night.

I wake up around 2.30pm to get ready to go into work, but I don’t start till 6.30pm so that’s when I take the first 50mg dose and then 20mg around 10pm.

Between the 2.30pm when I get up and getting to work I do struggle with focus etc, but feel it’s a waste to take the Elvanse 50 when I get up, as I need it to last till around 6.30am.

For the past few days, I took 15mg Dex when I got up around 2.45pm, then as usual the 50mg Elvanse around 6.30pm and the 20mg around 10pm.

This so far seems to be working for me, but it obviously means I have stimulants inside me for nearly 16 hours.

I’ve emailed the clinician about this, but just wanted to know if anyone has/had the same experience to share and how it worked out?

Sorry, the above is very long, there may have been a much simpler way to explain it all!!

Thanks 👍

I'm addicted to scrolling on my phone and although meds have definitely helped a bit with that impulse I'm still struggling. Sometimes I'm not even looking at my phone and still scrolling, it's like a comforting stim.

I want to limit my screen time in the evenings so thinking of getting a lock box.

My phone is the main issue so just a box that can fit that. I'd spend maximum £50 on it.

I fell like if i take it more than 2-3 times a week it starts to down-regulate my dopamine and i feel really blank and low without it. Do you guys take it daily and have the same experience?

I've recently gotten my first steady job with regular hours and paycheck (woo). I'm not struggling for money but at the moment my "budgeting" is based far more on vibes than on spreadsheets.

Is there any free or cheap (or good value) service that would help me put together a rough budget? So I can figure out what I need to put aside, what I should save, and how much I really have available?

I'm a woman, if that helps. I've been suggested what I think are common medications: Methylphenidate, Dexamfetamine, Atomoxetine and one other that he didn't put on my report but mentioned and I can't remember what it was. My appointment is tomorrow so any feedback would be good! Thanks. I also have mental health issues.

why does it feel so good but hurt so bad? WOAHHH (update: I meant FILING not filling omg)

Now I know that 30mg Elvanse (Lisdexamfetamine) is equivalent to 8.9mg dexamfetamine (Amfexa)

I know that Elvanse is released over 12 hrs.

I was put on Amfexa during the shortage, then later went back onto Elvanse.

So why is my ADHD well treated on 30mg Elvanse once per day, when I need 10mg Amfexa twice per day (total dose 20mg) to feel OK?

20mg Amfexa is equivalent to about 65mg Elvanse. But if I took that much Elvanse it wiuld be too much for me.

Individual drug variation? Something to do with my body? Before someone says it - no I don’t take the Elvanse with citrus/fruit juice or any other potentiators🤣.

Thanks for your thoughts.

So I currently have 3 diamond arts, 2 1/8 model cars (Delorean and 1966 Batmobile) and 2 Revell Star Wars kits (Grogu and the Razor Crest) in progress. OK so the Razor Crest kit in unstarted, but its knocking on my skull.

Plus Im trying to get to the gym and be healthier.

During the first month on Xaggitin I felt like I was getting somewhere, things felt clearer and I thought I'd hit a turning point, but now things are grinding to a halt, I'm losing interest in everything and everyone. In some cases things feel worse than before!

I have a meeting on Tuesday where Im going to bring this up. I just needed to vent.

Hi 👋🏻 I’m currently on the PUK waitlist for an assessment, but the thought of having to wait another year before titration has me looking at other options. Thinking of getting my GP to swap my referal

What I would like to know is how long after assessment is titration for the following providers and how where they for the assessment ; Dr J & colllegues ADHD360

It's coming up on Mon 3rd June. I'm really worried about it. I feel like they're going to overlook my case because of the stigma / non belief in this problem.

I literally couldn't manage without my parents at 35. They help me out with everything from finances, appointments, reading through documents.

I sleep 5 or 6 broken hours of sleep because my head won't stop whirring round.

I would have been high functioning and quite capable if I had the energy to do the things I need to do to keep a healthy life running. I'm so embarrassed about how much support I need. I need them to remind me and to help be organise my life.

We had a huge argument a few months ago and they said they feel like my carers. It hurt because they are not wrong.

I give them my money to help me budget. I need so many reminders and still screw things up.

I've lost friends, I struggle with large crowds. I feel like everyone is talking too fast for me to keep up when my mind wanders off on a tangent.

I could really do with this money and it would make a huge different to my life - I want to give myself the best chance. Literally ever penny will go on services and tools to help me to live an independant life.

Half of me wants to cancel but I've paid into this system and I feel like I deserve help if it's warranted.

What am I expecting during this phone call?

I work in a large organisation with multiple sites around the globe. Its a cybersecurity company, and I work in the Corporate IT org, a global team, specifically the IT Helpdesk division at a site which is highly where we support the organisation doing all kinds of IT work from tickets in JIRA to hardware deployment, hardware shipping and working with other Corporate IT Teams like the Network team to solve network issues and upgrade the network etc.

Its a strong mix of behind the desk work and hands-on zooming around the office kind of work, which takes you away from being attached to Teams and JIRA. Incident tickets and service requests are assigned across our helpdesk team on a round robin basis in Jira. We are not a contact centre/call centre.

Anyone else work in a similar job?

Does your employer support your ADHD, and if so, how? What do they put in place or what understandings are there.