[Diabetes] General Chat and Support Thread

banie01

https://www.boards.ie/discussion/comment/120912167#Comment_120912167

1 thing to be aware of using BYODA is that if you don't have an update for 6 months, that the app will throw up a connection error. It's rectified by just reinstalling it. I was thrown by this when it happened me but it's explained in the BYODA github as an intermittent integrity check.

So if you never update, the app will throw the error after 6 months to force an update.

banie01

https://www.boards.ie/discussion/comment/120917327#Comment_120917327

I have annual Travel Insurance included in my Revolut metal plan. The issue of loading for diabetes was queried by me and they came back to confirm that no additional loading would apply for me.

ebbsy

https://www.boards.ie/discussion/comment/120918829#Comment_120918829

cheers bud

Alanstrainor

Is anyone else struggling to source FIASP insulin? My pharmacist hasn't had any vials for a couple of weeks now, and does not know when this will change. I found a 'shortage notification' on hpra.ie:

https://www.hpra.ie/docs/default-source/Shortages-Docs/fiasp-vial-shortage-letter-15-june-2023_final.pdf?sfvrsn=2

Which suggests this should have been resolved this week, but as yet there's no sign. I just got back from my pharmacist who gave me FIASP pens as a stop-gap. I can fill pump reservoir from pens for now, but it's not ideal.

I almost always keep a good stock of insulin, and one of the only times I let it dwindle there's a shortage of the stuff.

CramCycle

https://www.boards.ie/discussion/comment/120659280#Comment_120659280

I'm confused, were you diagnosed with Diabetes and they gave you CREON or you have issues with pancreatic enzymes and they think you are Diabetic?

Kremin

Diagnosed with T1 Diabetes and then later with exocrine pancreatic insufficiency. CT scans and other tests were all fine so not sure how my pancreas got so damaged but here we are

Portrush Postman

Hi everyone; I’m new to the site and recently diagnosed type 1. I’ve been getting foot ulcers and wondering if anyone could recommend the best foot ware to use? I need a wide fit, deep toe box and after doing a lot of research online, I’m none the wiser!!

CramCycle

https://www.boards.ie/discussion/comment/121076114#Comment_121076114

Fit is more important than anything else followed by quality. Don't do online research for it, go to a shop that still fits shoes and get a recommendation. After that, keep your feet dry at all times (as in properly dry after bath, if you have been out in the rain, get them out and dry as soon as is reasonably practicable), don't expose to extreme temperatures (although I never abide by this) and do your best to get good glycaemic control (easier said than done but a CGM is a game changer). Where are you based? People might have recommendations.

Kremin

Hello everyone 👋

Starting Dafne in a few weeks and pretty nervous. Was asked to ensure I get bloodwork done before and log everything coming up to the appointment. Numbers have not been great recently so I’m worried there’s gonna be a lot of judgement :(

ohnonotgmail

Interesting article on a possible new diagnosis method for T2

https://www.diabetes.co.uk/news/2023/oct/say-what-ai-can-diagnose-type-2-diabetes-in-10-seconds-from-your-voice.html?ref=futuretools.io

Donutz

RTE news : Pharmacists to be given power to extend prescriptions

http://www.rte.ie/news/health/2023/1106/1414835-pharmacists-new-powers/

Looks like we won't need to get prescriptions renewed every 6 months for much longer.

banie01

The last 3 months have been the hardest I've put down in 20yrs in relation to my diabetes management. It's been rough enough on the personal front. I lost one of my younger brother's in July and no doubt grief has a part to play in where I'm at currently.

My HbA1C is still surprisingly decent at 7.9% but the time in range, and hitting extreme lows (lower than 3) and those lows are gaming my HbA1C. Time in range over the last 90 days has dropped from years of being quite consistent in the 70% plus in the green, to 55% and over the last 30 days it's even worse at 46%. Despite being out of target range for over half the time, my a1c for that time is reading at 7.8%.

On top of the personal issues over the last while, I'm dealing with quite a severe pain issue that is restricting my movement. If I'm upright for any amount of time, I end up in severe renal and ilioinguinal pain. From my kidney to my knee, the pain is a combination of renal colic and burning nerve pain, with an dollop of scrotal Pain just to add a cherry on top.

Pain management involves neuropathic meds, ice-packs and elevation and if any movement or travel is needed? Then it's planning the day around when I can take top up opioids.

I'm in with the endocrine/diabetes team next month and hopefully I can get some strategy or tips on how to better manage my BG rather than just upping basal insulin and bolusing.

I'll get on top of it, and at least regain a modicum of good control 😉 If nothing else?

Think of my moaning above as an example of just how quickly and by how much stress and external factors can affect our health and our diabetic control.

ebbsy

https://www.boards.ie/discussion/comment/121076114#Comment_121076114

I had that problem.

2 things.

1. Shoes have to be properly fitted. I went to Lyles in Portarlington. Not cheap but these guys are the best.

2. Socks. Wear them inside out.

ohnonotgmail

https://www.boards.ie/discussion/comment/121333364#Comment_121333364

--Certain medications will not be eligible for prescription extension.

I'm curious what medications will be ineligible.

ebbsy

Actually further to my previous post there is also a very good podatrist working out of Lyles shoeshop as well.

kippy

https://www.boards.ie/discussion/comment/121386330#Comment_121386330

You've got to hope that the types of meds that people like ourselves might have been on for years would be the easiest to put on this scheme. Insulin, Metformin etc

ebbsy

My Doctor gave me GRANUFLEX dressings for the foot ulcers. These proved very useful as they only have to be changed every 4 days or so.

With regard to the shoes, you can get them from the HSE but it takes years.

I didnt have time to wait.

ebbsy

Just as a follow up to my foot posts :

I was back to see Richard Barrett Podatrist in Portarlington yesterday.

Blisters are now gone and big toe ulcer is 95% healed.

He said the shoes and runners have made a huge difference.

He told me to start using CCP foot cream at night time, I tried it last night and it felt great.

ebbsy

Over in Newcastle again having got another 6 months of Noctura 400 masks. £600.

The scans this time show that the condition is actually showing signs of improvement for the first time since 2012. This is after 4 years of usage.

As this technology is new there is no data yet to show any point in the future where I can stop using it. So I have to continue using it.

Kremin

Hey all,

Firstly some positive news, I seen today that Libre 2 is now an option to self fund and get funded from the hse! Anyone have experience with using the l2 and how it compares to Dexcom? I used the Libre 1 for a few months before I got prescribed the G7. I’d love to try the Libre 2 and potentially swap over if it worked well but they won’t even let me have a trial sensor because I used Libre 1 previously.

secondly, kind of looking for advice and/or experiences. All consultants I currently see are part of the public system. My gastro related issues are continuing to worsen and worsen which is severely impacting my personal life. I had to fight so hard just to get my appointment moved up a few weeks and the consultant barely even looked at me for more than a glance. I’m considering, if possible, asking my gp to refer me to a private consultant. I have never gone through this before, is it possible to be referred privately for one thing but also remain under the other various consultants I see in the public system? Is it worth it? I do understand the healthcare situation is under immense pressure and these clinics are always booked up for months and months but unfortunately I don’t think I can keep living and waiting 7-9 months at a time just to be dismissed by this guy again

banie01

https://www.boards.ie/discussion/comment/121472529#Comment_121472529

Hi Kremln,

On the Libre 2 option, I was in with my Endo yesterday and he said he prefers the Libre 2 to the Dexcom G7 on basis of both cost (if self funding) and the format of the reports. The 14 day sensor life of Libre 2 Vs the 10 day life of Dexcom was also something he preferred.

That said, I'm on Dexcom G7 and I'm quite happy with it now. The 1st 3 months I was using it, I had 40%+ rate of failure on the sensors. Dexcom did replace every faulty one but, I did fear the whole system was flawed in my 1st 3 months or so of usage.

On a different note. How are the insulin dependent among us getting on? I usually adjust my basal at night to try and keep Lantus need to a minimum and offset the risk of insulin related weight gain. After going over my reports yesterday, my Endo recommended a more than 10% jump in my basal.

Fully appreciate that he wants to tighten up my HbA1C, that said yesterday's was a 56 and that's better than I expected after an awful few months. I am stuck between a rock and a hard place on the insulin Vs activity issue. Ongoing pain issue mean any exercise is very restricted. My fear is that upping basal will lead to a spiral of upping basals and further weight gain.

Any tips on mitigating that? Will be very appreciated.

To all on this corner of boards. Merry Christmas and happy new year! May 2024 bring us all better control & happier Endo s😁

gary29428

Hi Folks

My 14yr old son was recently diagnosed with Type1. We are getting on top of everything now and he's doing good. He is a super keen rugby player and is mad to get back training and playing.....looking for advice on pre game/training insulin injection....have read how parents give maybe half the shot required, but what if I do that in anticipation of him playing the whole game but he comes off with a knock after 5mins....would imagine his level would spike.

Any advise is greatly appreciated, how others handle there kids sports and type 1.

Thanks

CramCycle

https://www.boards.ie/discussion/comment/121521520#Comment_121521520

Are you in a financial position you could take up less painful exercise like a spinning bike (I'm a cyclist, all I could think of, I am sure there are others). As for the basal fear, I know that concern. It's hard to give advice as everyone is different. If you can keep your bloods in range without it, then I wouldn't but if your just bolusing alot, then you are just codding yourself. This said, diet and exercise can take a big sting out of it if you can find a way around the pain issues.

CramCycle

https://www.boards.ie/discussion/comment/121543021#Comment_121543021

It won't spike, it will rise and you can correct afterwards. Be careful of correcting to quickly as bloods can spike temporarily with sudden, intense, bursts of exercise. It will be a learning curve but as he is young, don't try to get it perfect for the first while. Better to run a little high and learn what works than have a hypo.

banie01

https://www.boards.ie/discussion/comment/121551571#Comment_121551571

Thanks for the reply. I'm lucky enough to have access to a rowing machine and some other gear at home that I can use without too much pain. The nature of the pain issue rules out any cycling, even though I have a fairly decent mountain bike. Fully agree with you that additional bolusing is just kidding myself. I have another referral sent off to a neuro-urology specialist and hopefully something good will come of that.

CramCycle

https://www.boards.ie/discussion/comment/121551847#Comment_121551847

Preaching to the converted I am sure but if your aim is simply keepng your BG in check, then as much low intensity exercise as you can manage. Increases insulin sensitivity and basically ignore athlete training advice, don't feed to train or achieve muscle growth, just only want you need to get by. Try and wrap up any exercise before you get any hunger urges or bonk, thats about it. Not much else you can do. Easier said than done with persistant pain issues, but not sure there is much else to say until you get more help with that.

BlackEdelweiss

Can someone refresh my memory please. When counting carbs do I use the total carb figure or the sugars only component?

banie01

https://www.boards.ie/discussion/comment/121603069#Comment_121603069

AFAICR, at my last nutrition course emphasised that it's total carbs, not just "of which sugars".

Rulmeq

Hey guys, looking for some advice here, My HbA1c has been rising for past several months (no dietary changes, and I've increased my exercise levels considerably), to the point where my endocrinologist prescribed Semaglutide (Ozempic). I went to my usual pharmacy and they told me the only get a small allocation, and that they can't fill it for me. So I guess my question is what do I do? Should I try and find a pharmacy that does have it (not sure how I would even go about that, and I'm going to assume that since there's a global shortage, there's not going to be anyone with it). Has anyone else experienced this? Should I just go onto insulin instead, or is there some sort of a waiting list I can go on (how do I get on it)?

ohnonotgmail

try every pharmacy close to you. just phone them all. if you find one that has it ask your regular pharmacy to send it to them. there still is something of a shortage but not as bad as it was last year. i've been on it for 18 months. it has been a difficult 18 months. I wont lie. the first 12 were the worst. it has eased off since then but i still get days where the nausea is such that I cant really eat. on the plus side i am 30Kg lighter and wearing the same clothes size as i was 30 years ago.

Rulmeq

https://www.boards.ie/discussion/comment/121756848#Comment_121756848

Thank you, I will try this. Fair play to you on the weight too!

Donutz

Anybody on here taking levemir? Just heard its being discontinued.

leche solara

https://www.boards.ie/discussion/comment/121975612#Comment_121975612

only in the U.S. for now

jimmyrusseII

hi all,

have some concerns that I might be diabetic, I have the following symptoms

Constant Thirst even though I drink a lot of water (2 -3 litres per day on average)

Waking up with numbness in hands

Waking up with extremely dry mouth

Heart palpitations

Profuse sweating

These symptoms are all exacerbated when I eat too much sugar.

No, I went to my GP with those concerns and he immediately dismissed them as I am not overweight and I go to the gym regularly, I took a urine and blood test and both came back negative, but I still have the same symptoms. In anyone's experience can a diabetes diagnosis be missed by those tests?

CramCycle

https://www.boards.ie/discussion/comment/122011387#Comment_122011387

What urine/blood tests? A BG tester from your pharmacy and do fingerprick tests will give you a good indication but even if it's not diabetes, it's not nothing and needs investigation.

ohnonotgmail

https://www.boards.ie/discussion/comment/122015733#Comment_122015733

A finger prick or urine test (I presume they mean a dipstick type test) don't tell you very much on their own. You need a hba1c test. When I first went to my gp she did the dipstick test and told me I didn't have diabetes. She took some blood for a hba1c and that confirmed I did.

CramCycle

https://www.boards.ie/discussion/comment/122017654#Comment_122017654

A glucose tolerance test will give you quite a good idea actually, very simple, overnight fast. Take a test, then take a test every 15 minutes for about 4 hours. Drink a large cup of orange juice or sugary soda at 30 minutes, look at the spike and return to base time.

This aside, with those symptoms, definely worth getting a full work up regardless, hence why I asked what blood/urine tests were done. Was it a dipstick and finger prick (as you said, singularly will tell you nothing) or was it a full vial taken and a HbA1c done, antibody, C peptide etc, as well as urines sent away for metabolites, glucose, protein and more.

banie01

A little PSA for any of the folks here taking any SGLT-2 inhibitors, the likes of Jardiance, Farxiga and other drugs. If you are awaiting elective or planned surgery?

1st be sure to flag it to your operating consultant, as you will need to stop taking them pre-op. There is a significantly increased risk of DKA (still small but statistically relevant)

I had a surgery cancelled on Monday as despite providing my list of meds at a consult and again on the morning of the op, the risk wasn't spotted until the Anaesthetist was reviewing my file.

Delighted to know that the cross checking and verification worked. I was on the trolley in pre-op when it was spotted and the surgery cancelled. Frustrating of course, but far better to be safe than sorry.

https://medtruth.com/articles/fda-regulation/fda-sglt-2-inhibitors-ketoacidosis-after-surgery/

In the announcement, the FDA tells patients taking SGLT-2 inhibitors canagliflozin, dapagliflozin, and empagliflozin to discontinue the medication for 72 hours prior to the scheduled surgery. For patients taking the SGLT-2 inhibitor ertugliflozin, patients should cease taking it 96 hours prior to their scheduled surgery. For all of these medications, the FDA recommends resuming treatment of type 2 diabetes with the medication as soon as the risk factors for ketoacidosis have dissipated.

Patients are advised to never stop taking a medication without consulting with a medical professional to discuss potential repercussions.

ohnonotgmail

https://www.boards.ie/discussion/comment/122030968#Comment_122030968

this must be a new thing. i had surgery 4 or 5 years ago and this was never mentioned.

banie01

https://www.boards.ie/discussion/comment/122031155#Comment_122031155

Since 2020 in the US and not long after in the EU. The Anaesthetist said there was a case in the recent past of a patient in Tallaght unfortunately passing away with SGLT-2 medication identified as a contributing factor.

The evidence is still under review but the current practice is to stop SGLT-2 for 3 full days pre-op.

Some more reading here.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8987984/

https://pharmaceutical-journal.com/article/ld/perioperative-management-of-type-2-diabetes-mellitus

Donutz

I'm under the care of the diabetes team from UL hospital group and they don't provide insulin pumps to adult type 1 diabetics. I have considered getting referred to Cork or Galway by my GP just so I can get a pump.

Does anybody know if this is actually possible to do?

Ezeoul

https://www.boards.ie/discussion/comment/122030968#Comment_122030968

Thanks for this. I'm having surgery soon, as I started on Jardiance in February so will mention it at my next appointment.

banie01

Sometimes the triggers that can spike BG should be blatantly obvious, and yet? One can labour on oblivious to it.

A case in point. My having a BG spike and slow decline in the mornings. I tend to wake high in the mornings anyway but over the past week I noticed that I wasn't getting the continued rise and slow drop that I'm used to. I had somehow stumbled into having a decent BG that plateaud and responded nearly normally.

I spent a little while wondering what had changed before I walked into the kitchen and the "obvious" slapped me silly 🤦‍♀️

I have a bean 2 cup coffee machine that was out of service for a week or so whilst I serviced it as I was waiting on a part.

Anyway it occurred tome that the improvement in my BG corresponded with the machine being out of order. I was still drinking coffee, so I knew caffeine wasn't the trigger.

Then it dawned on me. My usual morning coffee(s) were 2 big lattes made with lots of milk and 2 shots of coffee. It was the milk, I completely forgot to take the bloody milk into account!

Anyway, from now on, it's big Americanos with lattes reserved for treats and weekends 👍

dianaadrr

My sister was diagnosed with type 2 diabetes. That is so sad to hear

CramCycle

https://www.boards.ie/discussion/comment/122075015#Comment_122075015

It's annoying and upsetting for her but your pity won't be of any use (apologies, but it just won't help), so here is my view, maybe it is good news in the long run. I used to get down about my Diabetes until I realised how without it, I wouldn't be as disciplined as I am (and I am not that disciplined), but Diabetes has probably added 30 years to my life provided nothing else happens. Take the positives from it, regular check ups, a drive for more exercise and diet adjustments etc. something to focus on. Since it is Type 2, there is also the possibility that the side effects can either be slowed in their progression or even reversed. Tell her to get involved in some of the online groups who love to help out (Daibetes Ireland on FB, here, etc.). Ask questions about what is happening, what each drug does etc, but pity is only good for the first day, after that she needs your support and a positive twist on this, because it takes work to do well with Diabetes and she will need someone to remind her that with a bit of effort she will have as long and as healthy a life, possibly better, than she would have had without it.

banie01

This is one of those good news, bad news kind of posts for me. The bad news, I had surgery towards the end of last month for a chronic serious pain issue. The surgery went well, and the 1st 10 days after the op, I had near zero pain. The longest span of pain-free time I've had in 5yrs. Mobility was good and everything looked and felt resolved. Alas, it was too good to be true and the pain returned with a vengeance.

I am trying to look on the bright side for now. The op definitely disrupted whatever is causing the issue and there is likely another couple of surgeries possible, that may nix the issue. It's going to be mid July before the surgeon takes another look.

So, currently I'm back to being either immobile and swaddled in ice packs, or, mobile and relying on opioids to stay upright.

The lack of mobility and the myriad of neuropathic and analgesic meds aren't helping my BG and the last visit to the Endo in December, he wanted to push my basal out to minimum 50iu.

Like most, I find when I push up my basal that I gain weight. Between December and mid March, I added 13kg 🫤 not the end of the world, it's brought me up to 110kg but I'm 195cm tall so I don't look as fat as I am 🤣

Anyway as I'm fairly immobile currently, I can't exercise. So I started paying a bit more attention to my food and my basal.

Just being a tad more careful has helped me to knock the basal back down to 40iu. I've also massively improved both my time in range and hopefully, based on my Dexcom at least, my Hba1c, my December 23 A1c was a 58. Dexcom is telling me that my current A1c is tracking for 49 or lower and I'm managing 83% time in range.

Its the only aspect of my health I have any real control over at the moment, so fingers crossed I can at least maintain it 👍

ebbsy

https://www.boards.ie/discussion/comment/122134007#Comment_122134007

We will think about you often Mr.B.

ebbsy

So I am just back from Newcastle after getting another 6 months of the Noctura 400 glasses. £600.

No changes in eye pressure/ reading ability/fluid. The back of the eye is stable. (They have hospital standard equipment there).

Next month I will have a routine check up in Adelaide Road.

This mask is now used in all major eye hospitals in the UK. It should be used here as well.

banie01

https://www.boards.ie/discussion/comment/122171388#Comment_122171388

Thanks Ebbsy, much appreciated.

https://www.boards.ie/discussion/comment/122171407#Comment_122171407

Great to read that the Noctura is still proving effective for you and that it's benefit is being recognised by more NHS trusts.

I'm still on 6 monthly DRS appointments and whilst I've managed to stay stable. I can't help but feel some proactive measures like Noctura could be a benefit, not just for me but for everyone who's retinopathy is caught early enough to manage conservatively.

ohnonotgmail

Had something weird this morning. did my finger prick test and it came back as 10.3. I was shocked. it is normally in the 4 - 6 range and nothing has changed. so i did another test on the opposite side of the same finger. that came back as 4.7, which is more normal. did i do something wrong? any idea why that might happen?