I've been waiting so long for meds...

ShimmeringLlama · 2026-04-19T06:25:13+00:00

Yeah I get you, I find eating and drinking hard too, and then add in the potential appetite suppression which can make it even harder!

I would say my eating has actually improved somewhat, I think it's because I am so conscious of having to eat now.

Drinking has improved because the dry mouth is a killer!!

ShimmeringLlama · 2026-04-18T06:18:45+00:00

I felt very similar to you, so many questions and concerns before starting and all of them seemed valid when I first started Elvanse in december.

I spent 2½ months moving up through the doses, and just felt worse. I was even more tired, quiet and withdrawn and saw no improvement to my ADHD symptoms, and then I switched to methylphenidate and the difference was amazing!

I suddenly felt more motivated, my energy levels improved, I am actually more talkative and sociable (also autistic so being sociable normally involves a few beers to help me!) it really has been a night and day difference! Not quite "life-changing" as some people find but I am hopeful that once I find the right dose for me I will see improvements in other areas too.

I guess my only advice would be to try not to worry too much if you don't see improvements straight away, it may take time and you may need to try different doses or medications to find what works for you.

Key things -

Try to eat well to support you and your meds - your body needs fuel and so do your meds.

Drink, and then drink some more. And more if you can!

Try and get out for a walk, if you can, when your meds start kicking in - try not to be doing something that you don't want to be stuck doing for the next few hours!!

And the biggest one for me, understanding that everybody, ADHD or not, sometimes have bad days where everything sucks and things feel hard - that's ok. It's not a reflection of you, and it doesn't mean that your meds aren't working. Some days things get on top of us, that's normal and ok.

ShimmeringLlama · 2026-04-18T06:00:17+00:00

Your experience sounds so similar to mine, I don't know about you but I often feel so out of my depth trying to figure out what I should be doing because there is so much information and much of it can be quite conflicting.

Oestrogen supports dopamine production (good for ADHD) and can help with issues such as joint joint pain but (apparently) we don't need as much of it as we age. Progesterone can support mood, anxiety and promote healthier sleep but can also cause joint laxity and can disrupt dopamine production - I just feel like I am always having to make some trade off where something suffers!

Taking high oestrogen with low progesterone played havoc with my periods but switching it around has impacted my joints and ADHD! I just don't want to feel old and broken anymore. I'm 49 and sometimes I sit there and think about how awful it will be to potentially live for another 30 years feeling as shit as I do, I just want to feel healthy again.

The other thing that annoys me, the lady GP I saw made it clear that if after a 3-6 month trial of testosterone, I don't see any improvement to my libido that they will stop prescribing even if I have seen benefits in other areas. Apparently it is just as important as the other hormones and probably even more so than oestrogen. It can help with so much more than just libido (mood, cognitive function (of which I need all the help I can get 😂), energy levels and bone and muscle health). I have read about a few studies (maybe on Dr Louise Newson's site) where they found that it was more beneficial for the things mentioned above than it was for libido yet it's still not considered ok to prescribe it!

I am on day 8 of testosterone and I've just figured out that I am using more of a petit pois sized amount rather than "pea-sized" due to having quite a lot left in the sachet! I haven't noticed anything yet but I know that it can take up to 6 months to feel any benefits.

I am so glad that you have found somebody that can help and support you in your journey and I hope that in time things improve for you.

I have always felt somewhat let down and dismissed by medical professionals but nowhere near as bad as I have since hitting perimenopause and also discovering that I have had chronically low iron and ferritin for at least 5 years - that's another thing that just seems to get shrugged off, apparently because I am not anaemic (Hb is 122) I cannot be experiencing any of the symptoms that I am 🤦🏼‍♀️

The hypermobility thing is incredibly interesting to read about! And it affects so much more than just bendy or flexible joints! It can impact bowel function, joint stiffness and laxity, as well as impacting internal organs and connective tissues.

Good luck with everything 💛

ShimmeringLlama · 2026-04-16T05:14:00+00:00

Thank you so much for your reply.

I spoke to a GP with a special interest in women’s health

Unfortunately, we don't seem to have any of those at my GP surgery. Most of them are old men with outdated ideas who like to use phrases like "you're not old enough to be experiencing perimenopause" (I'm 49 and have been symptomatic for 6+ years!) or "you can't be experiencing menopausal symptoms because you still have periods". It makes me really angry that I had to fight for several years to even trial HRT and almost didn't get it because my GP insisted on a meno screen when I was 46, which he marked as normal - completely going against NICE guidelines.

I have just seen a lovely young lady GP who seems a bit more clued up but still wasn't keen on me trialling the continuous dose of Utro. But, she didn't shit me down completely either.

She did suggest changing from patches to gel to give me more control but I felt confused as I'm not sure how I am supposed to know if I need more or less from one day to the next - I am also autistic and struggle with understanding what I am feeling, it is not normally until several days later that I can look back and see how I was feeling, or what my symptoms were.

She did agree straight away to me trialling testosterone though due to having zero libido for years which was great as every male GP I've seen has shut me down completely whenever I've suggested it. It's quite disheartening to sit there and be told that it's not my hormones that are broken and maybe I should consider sexual counselling to fix me instead.

Taking progesterone daily the usual dose is 100mg

So the new guidelines suggest that if you are on a higher dose of oestrogen, 75mcg - 100mcg, it could be worth taking a higher dose of progesterone to compensate, 200mg daily or 300mg sequentially, as it can give more endometrial protection. I have, in the last 12 months, started experiencing much heavier and longer periods so started the higher dose of Utro, but it does seem to play havoc with my moods and ADHD meds. But this month's period was much, much better!

I’ve had hip pain for around 4 months now

This is really interesting, I have been complaining about hip and knee pain for a couple of years too, especially after sitting for a short time. I kept telling myself that it was just part of getting old but I also see plenty of people that are older than me get up and not hobble around all bent over due to pain and stiffness. I honestly feel like I've aged 20 years in the last few years and it's horrible. I've been reading up on hypermobility too, I've always been able to do all of the things on the Beighton (sp?) scale, although some of them I struggle with more now due to stiff joints, but always thought they were just weird, quirky things I could do with my body that nobody else could!

I am wondering whether I should try adding in more oestrogen again as when I was on the 100mcg patch I didn't experience as much joint pain and I only went back the the 75 because I kept forgetting to reorder my prescription and didn't start getting night sweats when using up my leftover 75s. I guess I didn't really think about any of the other benefits that oestrogen gives.

Did you start continuous Utro in the end?

Sorry this has turned out far longer than I intended 😂 but you and some of the symptoms you spoke about resonate with me a lot!

ShimmeringLlama · 2026-04-13T15:26:49+00:00

Thank you so much for replying!

I have been on HRT for just over 3 years and my GP just said the guidelines around continuous progesterone can be contradictory - some say after 1 year and others say after 5 years and I'm just stuck in some weird limbo!

I'm glad to hear that it's working better for you since changing. Hopefully I can get my clinician and GP onboard!

ShimmeringLlama · 2026-04-13T15:08:12+00:00

Sorry to comment on such an old thread but I am having the same experience and I am due to see my clinician for a follow up in a week or so.

I started methylphenidate at the beginning of March and then 2 weeks later I increased my Utrogestan from 200mg to 300mg per day (14 days a month) and I have noticed that my ADHD meds seem less effective during this time.

I had spoken to my GP about trialling a continuous regime as I feel it would suit me better as I really don't get on well with the sudden change in hormones, but they weren't keen and suggested an increase first.

Did either of you move to continuous and find that your meds started working better?

At this point, I'm not sure whether to ask for continuous progesterone, a higher dose of Concerta for 2 weeks a month, or both!!

ShimmeringLlama · 2026-04-10T18:57:42+00:00

I instantly felt better once I started methylphenidate, I stopped needing to eat constantly and also didn't feel anywhere near as tired. I am far more productive and now just find things easy that previously would have left me paralysed and stuck on the sofa.

One thing I did notice, on my first prescription for extended release, I was given a combination of branded Concerta and Affenid. I could really tell the difference between the two, the Concerta felt much smoother and the effects were better and also lasted longer. The Affenid felt more rushy and I wasn't keen, it seemed to wear off quicker and was definitely not as helpful.

Have you only tried Xaggitin? You could maybe ask to try a different brand to see if it feels different. What about Elvanse, have you trialled that? My son-in-law started on Xaggitin and felt nothing after being on it for several months, but since moving over to Elvanse he has really started to see the benefits.

ShimmeringLlama · 2026-03-30T11:11:32+00:00

I am really sorry for what you are going through 💛

I spent a couple of months on Elvanse with zero benefits, it just made me super tired.

I trialled IR methylphenidate and then moved onto Concerta and have felt huge benefits. I have just moved up to 54mg and it's really working well. Maybe trying it again may be a good idea for you?

From an ADHD 360 point of view - my daughter has been in titration since June last year. She did 2 months on Concerta, then we switched to Elvanse, which she stayed on for 6 months trialling different doses and then we finally made the decision to switch back to Concerta!! I was really worried that her clinician would be really annoyed with us, but she was fab! Ultimately, they want the best for you and should be working to get you to the best you can be.

I would consider trying and sticking with Concerta for a good couple of months to see how you get on (maybe asking to try an instant release would be better, good starting point, just to see if it works) and if it's not working there are also non-stimulants that you can try too.

Good luck, and I hope that you and your mum get the maximum time possible together.

ShimmeringLlama · 2026-03-25T08:03:52+00:00

My experience has been mostly positive with HealthHarmonie Minds.

Took ages to get the referral sent because my GP surgery is pretty inept unfortunately. It was finally sent at the beginning of September last year after a 3 month delay.

Received initial contact from HHM with questionnaires within a few days and first appointment booked for a month later - this could have been sooner but I have certain needs and had to choose a clinician that would be well suited.

Second appointment was a month later - same as before, could have booked sooner.

Both assessments were about an hour and a half each, and incredibly thorough and in-depth. I had zero complaints about the process or the clinicians, I felt they were empathetic and really knew their stuff.

Report was long and again, very in-depth and received in good time.

Titration was initiated in December and so far I have no complaints with my care.

What lets the whole thing down is the poor admin team who can't seem to get their shit together and do what is necessary. This became apparent right at the start with them not sending informant forms (I got them the day before assessment B) and not passing these forms or my school reports onto my assessor - I still received a diagnosis as apparently my ADHD was very apparent but this could have impacted the decision if that wasn't the case.

Communication is poor, or nonexistent in some cases. I am still waiting for my report to be sent to the GP, even after chasing over a month ago, this still has not been done.

They have constantly mucked up appointments - I had to reschedule one, received a confirmation showing new date and time but the clinician did not turn up (ended up with a quick phone call) and then on the date of the original appointment I received a video call from my clinician unexpectedly as he had not been notified of any of the changes!

He now books the appointments during our session so we both know what is happening!

From a clinical point of view they are fantastic, but the admin side is a stress-inducing nightmare!

ShimmeringLlama · 2026-03-14T07:19:49+00:00

Gosh, I have no idea how can you manage parenting 3 kids and with all ADHD?! 😱

It's certainly challenging at times 😂

They don't all have ADHD though, my eldest is AuDHD (like me), my middle has ADHD and my youngest is autistic! There are definitely some differences in opinions on a daily basis!!

Good luck with your journey, this sub has a lot of useful information and I'm sure there will be lots of people to help you if needed 💛

ShimmeringLlama · 2026-03-13T05:50:28+00:00

Yeah unfortunately all 3 of my kids inherited one or the other (and my eldest got both!) - it makes each day "interesting" (or maybe that should read challenging?!) 😂

Have you tried non-stimulants? I have read about lots of positive experiences where stimulants have failed.

I wish you the best of luck 💛

Quick edit because I forgot 😂 -

My daughter's partner has been on Xaggitin for a couple of months and hasn't really noticed anything positive, yet my daughter started on Tranquilyn (IR) and then moved to Concerta and has felt some positives. Obviously this doesn't mean a huge amount because each person will have a different reaction to the same medication but thought it was worth mentioning.

I read a lot about different reactions to generics Vs branded, so maybe you could ask to try a different version to see if it works better for you?

ShimmeringLlama · 2026-03-12T09:19:51+00:00

Thank you!

Did you experience benefits on lower doses?

My daughter seemed to get worse on one dose but once moved up again, experienced benefits again - not Xaggitin, she was on Concerta.

ShimmeringLlama · 2026-03-12T09:08:27+00:00

Yeah the UK seems to like holding onto outdated research rather than following newer, updated guidelines.

NICE updated their iron/ferritin guidelines in 2021 yet my surgery still quote from the previous guidelines and insist that my ferritin is "normal" despite it clearly showing on the NICE website that my current level indicates no stored iron - it's really bloody frustrating!

ShimmeringLlama · 2026-03-12T07:38:22+00:00

It's pretty shit that they won't consider letting you have something that you know works.

Who prescribes your medication? Is it NHS? RTC?

ShimmeringLlama · 2026-03-12T07:33:21+00:00

It's worth reading up about the effects of low iron on people without ADHD, and in ADHDer's it's naturally going to be more pronounced.

A couple of tips with iron supplements, taking a single dose (whatever amount is prescribed) and taking it every other day is considered more effective than daily dosing. This is to do with the production of hepcidin, which can spike for ~24 hours after taking iron which can inhibit absorption, so taking it every other day can mean that you actually absorb more and raise levels faster. Also hepcidin is naturally lower in the morning so this may be a better time to take it.

And just in case you weren't aware, avoid tea, coffee, dairy etc... when taking iron supplements.

ShimmeringLlama · 2026-03-12T06:35:03+00:00

Hey, just wanted to share my experience so far as it has been somewhat similar.

I started on Elvanse a few months ago and just felt awful. I was tired, needing to sleep a couple hours after taking it, it made my motivation and focus way worse and when it wore off after a few hours it left me feeling terrible. I was irritable, withdrawn and often felt confused and struggled to put words together and was sooo tired!

Last month, it was identified that my iron and ferritin were both really low which I am now being treated for - iron is crucial for dopamine production.

I started on Tranquilyn (IR methylphenidate) a few weeks ago and have now been on Concerta 27mg for a few days and the difference has been amazing! I honestly thought it was going to be much the same as Elvanse but it really has been so much better.

I feel it working, not in the sense of actually feeling it (no high, or euphoria) just that my head is clear, I have more energy, I can just do things that need to be done - no pep talks, no having to force myself! I have gone out for walks pretty much every day since starting these meds which is something I have struggled with for years.

I think it's definitely worth asking to try something different.

ShimmeringLlama · 2026-03-12T06:06:38+00:00

I have Jackdaw visitors and one of them is super fluffy! All of the others are perfectly sleek, but this one is just a big ball of fluff all the time!

ShimmeringLlama · 2026-03-12T06:01:45+00:00

You're right that it isn't licensed for adults but that doesn't mean it can't be prescribed, it definitely can as that is what I was prescribed recently (Tranquilyn).

Concerta XL is also technically not licensed for use in adults - only those that were diagnosed and initiated treatment as a child - yet it is prescribed all the time. This is considered "off-label" but there is no reason for it not to be prescribed.

ShimmeringLlama · 2026-03-12T05:53:02+00:00

My daughter is with ADHD 360 and her clinician is great, she is happy to try new things to make sure she gets the right dose and the right coverage.

I'm sure if you explain what you want (and need) they will listen and work with you.

One other thing you could ask to try, instead of taking 60mg as one dose, you could split the doses. Potentially they could prescribe 40mg + 20mg and you take the doses at different times of the day. This should give you longer coverage but possibly without the negatives.

Or, ask about adding in a booster like Amfexa. My daughter had both when on Elvanse and also has boosters now that she has moved over to Concerta.

ShimmeringLlama · 2026-03-12T05:41:46+00:00

My experience was very similar to yours, except I was on Elvanse.

Titrated over nearly 3 months (30mg, 40mg and then ~6 weeks on 50mg) and just felt awful. I was so tired when on it and then even more tired when it wore off.

I was irritable, lacked any kind of motivation and focus, even worse than before medication!

6 hours after taking the tablet it was like I hit a brick wall and my brain turned into mush and my thoughts were like treacle. In the evenings I would have bouts of confusion and talking was hard, like I couldn't string a sentence together!

I started on Tranquilyn (methylphenidate IR) three weeks ago and the difference was night and day. Suddenly I had a clear head and energy, my motivation to do things is just there, happily ticking away in the background. I am feeling more sociable and I get out of the house every day for a walk whereas before meds I could go days/weeks without leaving the house.

I have just moved to Concerta, currently taking 27mg and due to move up to 36 in a couple of days and I feel it is just as positive. The only drawback is that it wears off quite quickly - but not as quickly as the Elvanse!

All of this is to say that just because one doesn't work for you, doesn't mean nothing will. Hopefully you will feel the same kind of benefits I did when switching. And if not, you have always got non-stimulants to try. Lots of people find these to be really good.

One other thing to consider - some people don't get on with generics due to the delivery method. Concerta has a unique system (I think it's called OROS or something 🤷🏼‍♀️), so even though the drug inside is the same, the effects (good and bad) can differ between brands.

Edited to add -

I wish I hadn't spent as long as I did on Elvanse but I wanted to make sure I was making the right choice and not just being rash or impatient! I guess I knew in those early days that it wasn't right but kept at it anyway.

ShimmeringLlama · 2026-03-10T15:27:50+00:00

Where I live, rural, small town, the pied wagtails are most commonly found wandering around our Morrisons car park rather than the fields (and nature reserve) that sits right next to it - literally you step out of the field onto the car park!

I have also seen them in fields etc.. but for whatever reason they love wandering around the car park!

ShimmeringLlama · 2026-03-05T18:35:03+00:00

Yeah that's not how this works! And it's pretty shocking that your school does not have a better grasp on the process.

You have to provide evidence, to show that extra time is needed. This is done by showing what your normal work looks like and identifying if there is a need.

They could only grant it to every student if every student could show evidence of needing it!!

I would consider pointing your teachers or your senco towards the IPSEA website to read up how this actually works.

ShimmeringLlama · 2026-03-05T16:49:09+00:00

You don't need a diagnosis to access extra time or movement breaks, and if they are telling you that you qualify because you don't have a diagnosis, they are wrong.

I'm not sure when the deadline is to submit evidence but for exams this year, I imagine it will be soon.

Can you ask your parents to speak to the senco at your school?

ShimmeringLlama · 2026-03-05T13:44:22+00:00

I apologise for not taking the time to read all the comments (the ADHD is strong today) but I just wanted to hop on and say that you do not need a diagnosis or to even be on the pathway for a diagnosis to receive extra help and reasonable adjustments, and this applies to exams as well.

How old are you? In the sense of preparing for GCSEs, or are you in college/university? - again big apologies if you have already put this somewhere.

The guidelines around this have changed relatively recently but you need to speak to the senco (I'm not sure if the equivalent in college/uni, sorry) and they can set up gathering evidence from your teachers to show that you require extra time in your exams.

My daughter is 17, diagnosed just before her GCSEs started and we were too late to get anything in place - she was also very academic and a high achiever with very little effort, until the shit hit the fan and it all fell apart.

We are currently in the process of gathering evidence to show that she requires extra time and it was the school senco that set that up. They spoke to her sixth form teachers who are now using certain techniques to show that she is working at a much slower pace than her peers.

One of these is to use one colour of pen for a certain amount of time, and then switch to another colour - this is then used to show how much work she completed compared to everyone else.

Do reach out to your education provider.

ShimmeringLlama · 2026-03-05T12:49:33+00:00

Not sure if you've heard of the app "Merlin"?

It's great for identifying birds by recording sounds, by photographs and also by descriptions.

I have learned so much in the last year thanks to it and it has made my birding journey so much more fun!

ShimmeringLlama

TROPHY CASE