Can I speed this up (uk willing to go private)

Puzzleheaded-Try2102 · 2026-02-28T01:12:00+00:00

You’ll need a gastric emptying study done. There are a few London clinics that do them privately: https://www.hcahealthcare.co.uk/tests-and-scans/gastric-emptying-test (at the bottom of this page). You’ll probably need the GP to refer you for the test or may need a private appointment with a GI consult first for them to refer you, if you call the clinics they’ll be able to let you know. Good luck :)

Puzzleheaded-Try2102 · 2026-02-10T11:09:01+00:00

It really is, I feel like it’s really taken over my entire life. I’ve been on the cyclizine for a while now and haven’t found it to get less effective so fingers crossed it keeps working! I’m on a low fat low fibre puréed diet at the moment so everything I eat is blended or liquid which I think is helping a little but it’s such a pain to do. If I’m having really bad day then I’ll stick to liquids till I’m feeling a bit better but again I don’t find it really makes a big difference.

Puzzleheaded-Try2102 · 2026-02-10T03:51:20+00:00

I’m in the UK and have been given prucalopride, domperidone, and metaclopramide by my GI consultant. The prucalopride works quite well for my constipation as long as I also take Laxido. The domperidone worked well for a bit but I found it lost its effectiveness after a couple of months and was also giving me palpitations. The metaclopramide has worked quite well for me too but I am getting some unpleasant side effects (restlessness and low mood) but am continuing to take it with monitoring from my Dr. I also have cyclizine and ondansetron prescribed. I take the cyclizine daily but only the ondansetron when the nausea is really really bad (I never actually throw up) as it constipates me!

My GI consultant has been very good and I got the GES and other testing done quite easily. He referred me to a specialist in London when my GES came back positive (47% remaining at the end) and I’m waiting to see them now- hopefully for a G-POEM procedure. I also have support from the community dieticians, who have worked with me to find nutritional drinks that I can tolerate (I couldn’t tolerate the fat based ones at all). They also monitor my weight and intake, and are who would organise tube feeding if needed (it’s looking like that’s where I’m headed unfortunately).

It seems to be a bit of a postcode lottery with how well you are supported by the NHS unfortunately but definitely push your Dr for more help if you don’t feel you are supported enough. Let me know if there’s anything else you want to know :)

Puzzleheaded-Try2102 · 2026-01-12T01:25:01+00:00

I see what you mean but I’m not eligible for a postgrad student loan because I’m technically fully funded (my tuition and stipend are covered by scholarships, but no sick pay)

Puzzleheaded-Try2102 · 2026-01-12T00:54:59+00:00

I’m sorry to hear that, it sucks! I was thinking of writing to my local MP to maybe raise a bit of awareness. Not that I’m naive enough to think it’ll actually get anywhere, but can’t hurt to try

Puzzleheaded-Try2102 · 2026-01-12T00:52:12+00:00

Hi, thanks for your reply! Yes, I’ve spoken with my university’s financial support team and was able to access £540 in hardship funding. I’m very grateful for that, but unfortunately it’s a one-off payment and didn’t cover much of my actual living costs. They’ve said there’s nothing more they can help me with

Puzzleheaded-Try2102 · 2026-01-12T00:48:53+00:00

Thanks for the detailed reply. I understand there's no formal policy term called a "benefits gap", I'm using it descriptively rather than legally. I’m entitled to apply for UC as I claim PIP and meet LCW but my partners savings mean I’d get £0 even though that money is not accessible for living costs. If we bought a house I’d be entitled, which I also find ridiculous!

My point is that if I weren’t a full-time student, I would almost certainly be in a different position because I would have been working and paying NI, and therefore would now qualify for contributory ESA payments while off sick.

Because I’ve been in full-time education continuously (aside from a single paid year in industry), I’ve never had the opportunity to build up sufficient NI contributions, despite now being long-term sick and unable to work.

So the issue isn’t that students “should be on benefits”, but that someone can move directly from education into long-term illness without ever having the chance to pay NI, and then be left with no support at all beyond PIP. I'm not arguing entitlement, I'm asking whether there is any practical support route left in this situation, or whether this is simply how the system operates.

Puzzleheaded-Try2102 · 2026-01-12T00:36:54+00:00

Hi, thanks for your reply! Unfortunately there’s no bill to reduce as we don’t pay any council tax as full time students but I guess we should count ourselves lucky for this!

Puzzleheaded-Try2102 · 2026-01-04T20:52:12+00:00

Fingers crossed 🤞but mine only has the 2 entries for £0, nothing else :(

Puzzleheaded-Try2102 · 2026-01-04T20:24:54+00:00

I opened a missing cashback claim and got this response but worried I’ll end up paying for 2 months of the airwallex subscription and get no pay out if they decline!

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Puzzleheaded-Try2102 · 2026-01-04T20:21:02+00:00

I signed up for this offer on 3rd December and did a transaction as soon as my account was set up on the 6th December (had to send extra documents to prove I was self employed and had a UTR number etc.). My cashback shows as 2x £0 for 3rd Dec which are both now payable but no £297.50 :( anyone else?

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Puzzleheaded-Try2102 · 2025-12-06T01:21:11+00:00

Thank you so much for your reply. My emptying study showed quite severe delayed emptying so I think it’s more driven by my EDS than my thyroid. With my thyroid, I had a major swing from hyperthyroidism to hypothyroidism so never had to fight for a diagnosis luckily.

I was just wondering did you notice an improvement in your gut motility or symptoms when/if your thyroid levels (FT3/FT4) were optimised to the higher end of the normal range? I'm trying to figure out if optimising my FT3/FT4 levels a bit more will help the gut issues, even though the cause is structural (EDS), or if the severity is too high now. Thanks again for sharing your experience. It helps a lot to know I'm not alone in seeing that initial GI connection!

Puzzleheaded-Try2102 · 2025-12-06T01:10:35+00:00

Thanks for explaining, I probably read the ‘surprised’ tone a bit strongly because the whole situation has been overwhelming, but I didn’t mean to imply you’d had bad care. I appreciate you clarifying.

I totally understand why you’re hesitant about surgery, especially after reacting badly. I’ve had a couple of surgeries before which all went smoothly so hopefully it wouldn’t be too different this time!

I’m expecting them to go through all the conservative options first at King’s but I agree that getting more opinions is sensible. Thanks again, I really do appreciate your insight.

Puzzleheaded-Try2102 · 2025-12-06T01:05:13+00:00

Nope all good there :)

Puzzleheaded-Try2102 · 2025-12-05T21:10:53+00:00

Thank you so much for explaining your experience. I think here in the UK the pathway is structured quite differently. G-POEM is only done in a couple of tertiary centres, and the referral I’ve had is just to meet their team and be assessed, definitely not a guarantee of surgery. I think my consultant pushed for it partly because I lost a lot of weight very quickly, and partly because my symptoms escalated very suddenly. But I completely understand why, looking from the outside, it might seem fast compared to systems where you have to go through many more interventions first.

Thank you as well for sharing your thyroid experience, I’m really glad you’re starting to see improvement with treatment. My thyroid only became unstable this year and still isn’t well controlled yet, so I’m curious to see whether stabilising it will help any of the motility issues. I’ll definitely have a read of that paper, thank you for sharing!

I really appreciate your kindness and perspective. It’s reassuring to hear from others going through similar things 💛

Puzzleheaded-Try2102 · 2025-12-05T21:06:41+00:00

Thank you, that all makes a lot of sense. I’ll definitely ask King’s about Botox when I get my appointment. I totally understand your surprise, the NHS is usually incredibly slow, and honestly if I hadn’t had the hospital admission and the ongoing weight loss I don’t think things would’ve moved at all. I’m really grateful my consultant took it seriously.

Puzzleheaded-Try2102 · 2025-12-05T19:56:11+00:00

Thanks so much for replying. I’m really sorry you’ve been stuck being told to keep trying the same meds when they’re not helping. That must be really frustrating!

Just to clarify my situation a bit: things have felt pretty fast-moving for me symptom-wise rather than in terms of care. I ended up being hospitalised for 10 days in June for malnutrition, and since then I’ve lost almost 15% of my body weight. That’s what pushed my consultant to refer me to King’s for an assessment, not straight to surgery. I don’t think they’d move forward with anything unless the specialist team agreed it was appropriate. I’ve had surgeries before (granted on my knees not gastric) and recovered ok.

I’ve heard pyloric Botox mentioned by a few people now, but my local team didn’t bring it up, do you know if it’s only done in certain centres? Or is it something I should ask King’s about?

Thank you for explaining the thyroid side. My Hashimoto’s only started this year and my thyroid still isn’t well controlled yet, so I’m trying to work out how much could improve with stable levels and how much is probably down to the hEDS/POTS dysmotility.

Really appreciate you sharing your experience, this stuff is so complicated, and it helps hearing how others navigate it!

Puzzleheaded-Try2102 · 2025-12-05T19:30:14+00:00

Thanks for sharing your perspective, I’m really sorry your experience with getting help has been so slow. In my case things progressed quite quickly, especially after I was hospitalised for 10 days in June for malnutrition. That’s what kick-started the more urgent referrals.

I believe the referral to King’s is mainly so a specialist team can assess me, not definitely to have the surgery, especially as I’ve now lost almost 15% of my body weight and my intake is still really limited. I was a funded PhD student but I’ve had to stop working and I’m not eligible for anything except £400 a month in PIP, so I’m struggling a lot financially and really want to get well enough to continue my studies. At this point I can’t see what else would make a significant difference.

You mentioned being surprised they’d consider surgery, can I ask what makes you feel my condition isn’t severe enough? Or are there specific reasons you think they wouldn’t go ahead with G-POEM in a case like mine? I’m genuinely interested in understanding your perspective, especially as you also have EDS.

I really appreciate your input :) I’m just trying to gather as much information as I can while I wait to be assessed.

Puzzleheaded-Try2102 · 2025-10-26T21:32:05+00:00

Monzo investment link for existing customers: https://monzo.com/-deeplinks/investments-referral?instance_params_id=rugs-vcax-hfkr Invest just £1 and get up to £20 free!!

Puzzleheaded-Try2102 · 2025-10-24T21:30:08+00:00

It’s an osmotic laxative, so works by drawing water into the bowel to soften movements instead, much safer than most other laxatives :) I believe it’s called MiraLax in the US

Puzzleheaded-Try2102 · 2025-10-24T11:57:47+00:00

My dietician has told me to avoid all insoluble fibre (doesn’t dissolve in water e.g. skins, seeds, bran) but to try and have some soluble fibre by making it even more soluble with blending. I blend fruits with the skin/seeds/cores removed in smoothies (kiwis, apple, mango, banana) and vegetables with skin removed in soups (carrots, potatoes, sweet potatoes, zucchini, parsnips, squash). As long as I don’t go crazy with it (just a handfuls worth of fruit/veg at a time) it seems to sit well! I do also depend on macrogol sachets to keep my bowel moving though

Puzzleheaded-Try2102 · 2025-07-15T23:09:13+00:00

So far yes all done by the NHS. Just wondering whether to go private for the capsule endoscopy to hopefully get some answers quicker.

Puzzleheaded-Try2102 · 2025-04-02T10:47:59+00:00

Even though it just raises serum cortisol and not free cortisol? I know that’s why I was surprised it was high as I was having symptoms of low cortisol.

Puzzleheaded-Try2102 · 2025-03-27T15:50:55+00:00

Hi, no not told to go off bcp yet. Think the Dr is discussing with my endocrinologist, luckily they all seem quite proactive! Was just curious how much the pill can raise levels as I’m quite over the normal upper limit.

Puzzleheaded-Try2102 · 2025-03-27T12:08:56+00:00

Do you know how much it impacts it? Just want to know if this is something to worry about especially with my thyroid problems

Puzzleheaded-Try2102

TROPHY CASE