[Diabetes] General Chat and Support Thread

kowloon

https://www.boards.ie/discussion/comment/119971578#Comment_119971578

Wear a jumper with holes in it and walk with a bit of a limp, subtle manipulation. Failing that just remind them that the NHS is giving them to everyone and that can't be allowed to stand uncontested.

CramCycle

https://www.boards.ie/discussion/comment/119971578#Comment_119971578

Yeah, shouldn't cause the sensor damage, with the paracetamol and a few other things, it reads a false BG, as in your BG is higher in reality. Obviously something, maybe an excipient of paracetamol itself affects the readings. The NSAID I think genuinely lowers BG, so shouldn't affect the monitor at all, your bloods will just be slightly lower.

banie01

Bit of a moan post and feel free everyone to ignore it. I really am just venting.

I had my Endo appt yesterday, went well prepared with a a printout from tidepool and some other bits.

I went looking for 2 things. 1, a transmitter script to go with the sensors they'd prescribed for me last December. 2. Some degree of holistic care or advice regarding a neurological/neuropathic issue that has really destroyed my QOL due to no-one wanting to prescribe high dose NSAID or steroid therapy outside of Hospital without my being on a CGM.

Due to current cocktail of meds I've no confidence in my hypo-awareness. That's before I even broach the opiates that I am on. Everything in my day for the past 3.5yrs has had to be planned around how long I am going to be upright and how much I can do to abate that without topping up meds. I suppose I am lucky insofar as the maintenance meds do take the edge off and that opiates do work when needed. What should be noted at this point? Is that the registrar didn't have my notes available. Yes results up on the system but no clinical notes.

That said, Urologist and Vascular surgeons are happy to let the issue persists until there is risk to function. That's despite me having seen various specialists privately. The one constant in all the opinions is that as 1st line treatment is NSAID and Steroids where appropriate. That they are contra-indicated by diabetes that it's put up with pain unless/until an endo decides otherwise.

I laid all this out yesterday to a registrar who listened, went to talk to the Specialist who sent the sensor script last year, and then came back to say as I was GAD -, I wasn't entitled to a Dexcom. Folks, she prescribed the sensors last year, but not the transmitter 🤦‍♂️🤷‍♀️

My control is still fairly tight, a touch over 7 but I am basically immobile. I've been self funding the G6 transmitter for the past year at @ €220 per quarter. It's not a huge cost but with the price of everything else rising so quickly this year? It's one that has to be put on the back burner for a while.

The registrar,made it fairly clear that if I have a marked decline in control? That a reassessment will be made. Then marked me in for a 12 month review.

I'm rapidly approaching the end of my tether with pain issues and I don't know how to knock heads together out there at this point. I may write a letter to the Endo or I may just roll into a ball neck an Oxy and see what tomorrow brings while I rock myself in pain.

On a cheerier note, Merry Christmas and may the pancreas god be good to ye all this holiday season.

CramCycle

https://www.boards.ie/discussion/comment/120027122#Comment_120027122

Merry Christmas to you too. I sometimes despair about Irish doctors. It's probably buried here but when I went for a pump I was told my control wasn't good enough (basically you're a waste of money), tightened up to return to a different consultant who said I didn't need one as my control was so good. I walked out and didn't come back to an appointment for years. This BS response of you have to get worse before we help out is borderline criminal.

If you have a good DSN, talk to them and in as friendly as terms as possible, find out what box you need to tick to get it done in a few months and get them to write it on your record. Then kick up holy hell the next time your in. Possibly talk to Diabetes Ireland as well

Really sorry they are treating you so sh1t, particularly when you have all the other stuff going on.

Xofpod

https://www.boards.ie/discussion/comment/119901542#Comment_119901542

This exact same thing just happened to me. Sensor expired, turned out transmitter expired too, no replacement had been sent. Got on to Dexcom who informed me that my funding had been "completely depleted" and the hospital/clinic had not renewed it. I've left a message for the clinic but for the last 7 days it's been the ol accu-check for me.

Snake, would you mind sending me a DM as to which hospital/clinic you attend? I just want to get a feel for whether this is a local or a systemic issue.

feedthegoat

I am becoming frustrated with my good diabetes control. Too good control to get any type of sensor and nothing seriously wrong with me so I won't get appt in public hospital diabetes clinic for 18 months. Self fund ssensor from time to time when I have the cash, no longer go to private consultant. Only thing I get is retina screening which is a positive. After 46 years of good tight mgnt ot diabetes surley I, and others like me, deserve sensors and public appointments. I almost feel like I am being disadvantaged by looking after myself. Rant over.

kowloon

https://www.boards.ie/discussion/comment/120094478#Comment_120094478

Everyone should automatically be getting a sensor. They should be handing the things out on diagnosis. The long-term benefits are worth it. If the NHS has figured this out so can our lot. If this doesn't happen I suspect a lot more people will be telling their consultant they're losing hypo awareness.

feedthegoat

I would be telling my consultant that I am losing hypo awareness but I don't even have a consultant, cannot grt into the public system for 18 months.

CramCycle

https://www.boards.ie/discussion/comment/120096180#Comment_120096180

Thats insane, and then they put 6 month restrictions on LTI prescriptions. What hospital are you trying to get to for public appointments, it should be a 6 month max wait. Who has referred to you and who gave you the time to wait? There is nothing wrong with me and I get an appointment 6 months apart like clockwork, I'd be honest and say annually is plenty for someone like me.

feedthegoat

Had attended a fantastic consultant in the Mater Private until he suddenly retired. Didnt click with new specialist so my GP has managed me since then ie. reviewed regular blood tests and renews prescription. He referred me to Drogheda at my request in November 21, long term he advised me the service would be better. I got letter of acknowledgement from Drogheda and it stated there is an average wait of 180 days, waited that length before ringing and was told my case had been reviewed and would be a least another 6 months as I had no pressing issues. The secretary jokingly told me not to ring back in 6 months quoting her if I hadnt got an appointment. Was with GP last week and he rewriting letter.

Another issue that frustrated me recently was that my GP would only give me cert for a 3 year driving licence, told me that he was hamstrung by new RSA guidance. Don't know if anyone else has had the same experience.

Snake Plisken

Clinic times have certainly slipped since Covid I should have had my 12 month checkup last September but as of yet haven't been called. Just seems to be the way things are gone in the heath service

ohnonotgmail

anybody else waiting on a retina screening appointment? mine was due last august. They did contact me and tell me they were way behind and it will probably be the new year. not heard from them since,

Xofpod

https://www.boards.ie/discussion/comment/120107269#Comment_120107269

Was informed at my clinic last year that standard appointments for people without any significant complications were being pushed out to every 8 moths rather than 6 months, to better manage the growing list. Prescription only last six months of course but they said they'd renew over the phone and they've all been pretty decent about that in fairness.

Xofpod

https://www.boards.ie/discussion/comment/120116591#Comment_120116591

That's for my clinic of course. Every clinic operates under their own guidelines I guess

Xofpod

https://www.boards.ie/discussion/comment/120114530#Comment_120114530

Wasn't aware of a huge delay with this service. I'd definitely get on to them again. They should at least have a cancellation where they could slip you in

Xofpod

Diabetes Ireland doing an experience survey at the link below. Worth taking a few minutes to fill in, especially if you're having issues with the service at the moment.

https://twitter.com/Diabetes_ie/status/1615386239846285313

kowloon

https://www.boards.ie/discussion/comment/120114530#Comment_120114530

I got mine (in Meath) early this time, wouldn't have been due for another few months. Actually had to cancel because it landed the same day as an appointment in Dublin.

Tony H

Hi hopefully this will be my first and last post in this forum (nothing personal) , had a abnormal urine test pre covid , was taken by my rheumatologist 3 years ago , queried my GP a few times but nothing was done , moving on , before Christmas had bloods and urine tested by the GP's nurse and blood was found in the urine ,

sent to MUH (Mercy) and had a CT scan and more bloods inc PSA , nothing serious found apart from cysts on one of my kidneys , bloods all good inc BG ,

eventually last week I contacted the GP nurse and asked about results , she checked and was told that my BG was very high , I think it was in the 70's , and she asked me to come in for a glucose tolerance test which was done last Thursday , I do have some diabetes symptoms , like sudden crashes in energy and lately having loss of feeling in my small toes , but I never expected this ,

I have other health issues , inc losing most of my colon to UC , which will probably complicate things even more , but if the tests are positive for Diabetes , I will need a good Endocrinologist and will go private as I could be waiting for a while with the HSE , I'm living in Cork and Maeve Durkan seems to be getting good recommendations , has anyone got any other doctors they would personally recommend , if allowed by mods ,

anyway thanks for reading , hopefully I won't be back annoying everyone with my rambling .

Anyway its confirmed , nurse rang me and told me that I have type 2 diabetes , can't be seen by gp as they are so busy but still need a letter of referral for a good Endocrinologist , if any one has a good diet plan I would appreciate it if they could pass it on , thanks again .

CramCycle

https://www.boards.ie/discussion/comment/120107055#Comment_120107055

Seems to be guidance but they can sign you off for 10 years but I seem to be in a minority, got mine the other day without issue.

https://www.boards.ie/discussion/comment/120147972#Comment_120147972

BG or HbA1c? I suspect the latter as that would put you at around 9 in old money, if it was BG only, then depending on mmol/L or mg/dl you are either fine or dead. If its HbA1c, which it has to be, then yes its high but they need to do more test before deciding you are a T2DM. If you can get your hands on BG monitor, do a few tests over a day and also try a GTT test, a quick google will help you find how to do it but it is fairly simple, to bring to your endo. Lots of illnesses can cause high BG, so talk to your endo and see what they say.

If it is T2DM, reduce calories best way to do this is by switching as much as possible to less energy dense food rather than just cutting out food as that is tough. Diets are a bad idea IMO as they are not likely to last in many people, diet in modern terms implies short term, in reality, make sure it s a diet you can live with goign forward on a permanent basis. Less fruit, more Veg, less Carbs, more protein, a food diary would be very useful or examples of what you currently eat and people here could make replacement suggestions. More gentle exercise to spike insulin sensitivity, plenty of water to help your kidneys, cut out booze if you drink (or cut down), Cut out sweets, pastries. If you have a sweet tough, be prepared, the withdrawal of refined sugar can be tough on some people, it is incrediubly addictive without realising it.

TLDR, eat like you imagine your GP would tell a normal person to eat but actually do it.

feedthegoat

Short update, just got appointment in March.

Tony H

https://www.boards.ie/discussion/comment/120159114#Comment_120159114

thanks for that great info cram , some good info there , she started me on 500mg Metformin twice a day , bloods taken once a month using a HbA1c test  , said no need for BG monitor at the moment but I might get one anyway for peace of mind

banie01

Hey Folks, hope all here are keeping well and that the New Year is going well for ye all.

My GP runs a "cycle of care" programme for his patients with chronic/lifelong illness and I have to say, I'm liking how it's implemented.

The appointments are every 6 months. For a Diabetic, it's a fairly thorough review. Weight, waist measurement, feet check, BP and a chat with the nurse before being handed over to the GP for a medication review and a chat.

Prior to today my last review was in June. I'd then had my hospital Endo appt in December and it completely slipped my mind to make the GP appt.

The nurse is fairly on the ball. Rang me on Monday to come in today for the works. I know that a lot of people aren't able to avail of programmes like this. I do think though that the move to ensuring this care is provided at GPs and as part and parcel of the care pathway. Is a real benefit to the patient and the HSE. It really helps patients develop a sense of agency regarding their condition and it's management.

It goes a long way towards humanising the patient and is a far more rewarding interaction than my visits to my Endo and his registrar's box ticking exercise.

ohnonotgmail

https://www.boards.ie/discussion/comment/120192498#Comment_120192498

You're very lucky to have that. If i make a GP appointment the odds are that the GP will be one I have never met before. It is a big practice with a lot of turnover.

banie01

https://www.boards.ie/discussion/comment/120192581#Comment_120192581

I've been at the same practice since birth. My registered doctor has changed over time but there are now 3 GPs left in the practice and whilst I usually see the same one every time? I also know the other 2 quite well. It does make a massive difference to the quality of care and to my level of trust in everyone in the practice.

It's a busy urban practice but it's one that really does patient care well.

CramCycle

You guys can get a GP appointment, I rang for one in December and was told it would be late January. I asked what happens if it gets worse (bacterial infection) and was told just go straight to A&E.

Xofpod

https://www.boards.ie/discussion/comment/120192498#Comment_120192498

Would love to say my GP experience has been like that but in reality, far more like the other posters. Rotating cast of GPs, a different person every time I attended, very little specialist knowledge of diabetes, etc. Far better care since I switched over to a nurse-led diabetes clinic, a good few years ago.(that said, still waiting for funding to be processed for my renewed cgm, almost two months later....)

I agree with the OP that GP-led, care in the community/at the most local level possible is the ideal way to go, but we're a long way off from that possibility with most GP practices in the country at the moment, as far as I can see

banie01

https://www.boards.ie/discussion/comment/120195190#Comment_120195190

This is another thing that I've honestly never encountered even during the peak of lock down. I'd ring up to ask for an appt, then it would be a call back by one of the GPs for phone triage and an appt next day if needed.

Now my practice has 3 doctors, 2 nurses and 12k patients so it isn't like they're quiet. I know lots of people are still struggling to find a GP let alone get an appt with one. So I know how lucky I am regarding mine but, I do wonder how much of the pressure on GPs is down to GP practices procedures rather than demand pressure?

CramCycle

https://www.boards.ie/discussion/comment/120195771#Comment_120195771

I'd say its a mixture of things and really is a case by case basis. Where i used to live, we always got appointments within 24 hours, if not 3 hours, if it was important. A neighbouring clinic about 5 minutes down the road which had 4 times the staff was always a waiting time of a month and even in an emergency the admin staff turning people away at the door with the local FB page saying the staff wouldn't let their child in who was having A, B or C, so they had to leg it up the road to Loughlinstown. Our nearest one now won't register you so we attend one we went to 5 years ago in an emergency and our names are on their computer. Like that, the appointment times are booked out. A friend runs a practice in south Dublin and she prebooks all the routine stuff months/years in advance and seems to have no issue.

banie01

A couple of months ago I posted on here that the Dexcom G7 was available and prescriptions were being issued.

I couldn't find the GMS number nor could I find it on the LTI core list F as the last update was Feb 22.

Anyway, I managed to find the GMS info for it today and just in case anyone else is after this info 😉 it's Dexcom G7 CGM Sensor STP-GT-002 1 (A) 75.00 and the GMS number is 97631

It's covered for those eligible via HSE Primary Care reimbursement service. The February list is attached.

https://www.hse.ie/eng/about/who/cpu/non-drug-reimbursement-applications/personal-diagnostic-monitoring-and-delivery-guidelines/guidelines-pdmd-version-2.pdf

Tony H

type 2 here , newly diagnosed with a HbA1c level of 59 , on metformin and doctor says I don't need any monitoring other that a HbA1c every 3 months , can I insist that at least for the first few months that I could be prescribed with strips and a BG meter ?

don't want to piss off my GP , but my only other option is to insist on a referral to an endocrinologist and hope they will prescribe them ,

my other problem is that I have no colon (UC ) and that makes eating in general problematic ,

thanks