[Diabetes] General Chat and Support Thread

kippy · 20-08-2020 9:11pm

banie - sorry to hear that.

Others,
Can you advise on the continuous blood sugar monitors (the one that is on your arm all the time?
That types are available? Pros/cons cost?
Also,
do any of you use apps for logging sugar/dosage/food etc?
Any advice appreciated.

calfmuscle · 20-08-2020 10:25pm

banie01 wrote: »

After 19months of referrals, investigations, tests and ongoing agonizing pain.
I was given a provisional diagnosis of inguinal and Genito-Femoral neuralgia this morning.

No opinion was passed on whether it's related to my diabetes, but it was raised as a strong possibility.
None of that peripheral neuropathy nonsense for me
Straight on to the central ones! :pac:

Sorry to hear this ! Tis a strange diagnosis unless you have had surgery. I hope you get a definite either way!

banie01 · 21-08-2020 8:57am

calfmuscle wrote: »

Sorry to hear this ! Tis a strange diagnosis unless you have had surgery. I hope you get a definite either way!

Well it's more likely an impingement or inflammation than a trauma related cause.
That said, the pain management specialist did say it's quite an unusual presentation in someone over 30 without a traumatic injury or being overweight.

It struck me out of the blue March 2019 and it has been a trek to get a diagnosis and anything other than symptomatic relief.
The most debilitating and prolonged pain I've ever experienced.
3 Urologists and 2 pain management specialists but delighted to report that there is at least progress in the treatment and prognosis now.

I had nerve blocks 4 weeks ago as part of the diagnostic process that provided 3 days of absolute pain free normality

Followed up yesterday by a Rhizotomy on 2 nerves.

thehorse · 25-08-2020 7:02pm

Hello All,

Is anyone being treated for retinopathy here ? I’ve a little touch of it in my left eye and the DRS (diabetic retina screening) program highlighted it.

I’ve gotten treatment for it in UHL hospital and it’s been grand, my vision is perfect.

My issue is that my consultant is not updating the DRS system and each time I get my eyes screened by DRS , they have no info on the treatment i have gotten.

How do I approach this problem ? Is it the DRS or the consultant who’s at fault ?

Thanks

calfmuscle · 25-08-2020 9:36pm

thehorse wrote: »

Hello All,

Is anyone being treated for retinopathy here ? I’ve a little touch of it in my left eye and the DRS (diabetic retina screening) program highlighted it.

I’ve gotten treatment for it in UHL hospital and it’s been grand, my vision is perfect.

My issue is that my consultant is not updating the DRS system and each time I get my eyes screened by DRS , they have no info on the treatment i have gotten.

How do I approach this problem ? Is it the DRS or the consultant who’s at fault ?

Thanks

Its either the hospital not communicating with the DRS service or the DRS service isn't logging the information Correctly. To be honest I'm not totally sure if your consultant should be updating them. I'm not sure if it is just up to them to take the images, analyse them and report to the consultant or if they should be informed of your treatments. Either way id ask in the hospital.

ohnonotgmail · 25-08-2020 9:39pm

thehorse wrote: »

Hello All,

Is anyone being treated for retinopathy here ? I’ve a little touch of it in my left eye and the DRS (diabetic retina screening) program highlighted it.

I’ve gotten treatment for it in UHL hospital and it’s been grand, my vision is perfect.

My issue is that my consultant is not updating the DRS system and each time I get my eyes screened by DRS , they have no info on the treatment i have gotten.

How do I approach this problem ? Is it the DRS or the consultant who’s at fault ?

Thanks

i have the same issue. when i go to my consultant they never have the results of the retina scan either. they dont seem to talk to each other at all.

thehorse · 25-08-2020 10:57pm

calfmuscle wrote: »

Its either the hospital not communicating with the DRS service or the DRS service isn't logging the information Correctly. To be honest I'm not totally sure if your consultant should be updating them. I'm not sure if it is just up to them to take the images, analyse them and report to the consultant or if they should be informed of your treatments. Either way id ask in the hospital.

The issue is that the consultant believes themself to be above everyone else and as a result , is not providing any feedback to DRS.
DRS sent me to this consultant in the first place when the retinopathy was identified. The treatment is an injection in to the eye and it rectifies it but the injections are needed every 6/9 months. My belief here is that the consultant is in the wrong but I may be incorrect.

Perhaps I will ring DRS and speak to someone at a managerial level to see WTF is going on

From my exp, the DRS and hospital communication is non existent

thehorse · 25-08-2020 10:59pm

ohnonotgmail wrote: »

i have the same issue. when i go to my consultant they never have the results of the retina scan either. they dont seem to talk to each other at all.

Your consultant should be taking their own scans too and will perform laser or injections to rectify the issue

calfmuscle · 26-08-2020 12:04am

thehorse wrote: »

The issue is that the consultant believes themself to be above everyone else and as a result , is not providing any feedback to DRS.
DRS sent me to this consultant in the first place when the retinopathy was identified. The treatment is an injection in to the eye and it rectifies it but the injections are needed every 6/9 months. My belief here is that the consultant is in the wrong but I may be incorrect.

Perhaps I will ring DRS and speak to someone at a managerial level to see WTF is going on

From my exp, the DRS and hospital communication is non existent

Unfortunately that is how it still works in Ireland. The consultant rarely communicates with anyone bar the gp or for an onward referral. Its very backwards but it is how it is.

CramCycle · 26-08-2020 7:51am

All my DRS stuff is on the system when I have a hospital appointment. I'm not sure why the consultant would be updating DRS since they are simply a screening program, should the data not be one way only or am I being stupid? My understanding if DRS take the shots, review them, highlight issues and at most will call you back for better screening if there are potential issues but they are not a treatment or diagnosis centre, in fact knowing you've had a treatment could bias their review.

ohnonotgmail · 26-08-2020 8:24am

thehorse wrote: »

Your consultant should be taking their own scans too and will perform laser or injections to rectify the issue

my consultant hasn't even looked at my eyes since the retina screening began. To be fair any exam they do isn't going to be anywhere near as accurate as the retina screening.

calfmuscle · 26-08-2020 9:53pm

ohnonotgmail wrote: »

my consultant hasn't even looked at my eyes since the retina screening began. To be fair any exam they do isn't going to be anywhere near as accurate as the retina screening.

To be fair they work off the reports from the screening service. Looking in your eye won't show them what the report does.

calfmuscle · 26-08-2020 10:03pm

Update on my issue with being told I can't participate in my sport unless getting signed off by a doctor. I sent them a letter including a letter from diabetes Ireland and a supportive email from the ICGP. They sent one response that was very defensive and no effort to reconcile the isssue. I sent a reply sympathising with how difficult things are due to covid but pointing out equality must still be respected.

No response in 3 weeks. I'm appalled. As per a suggestion on here im making a complaint to the IHREC. And I've left the organisation. Which im really sad about as my team mates are great. But I think its an awful and very backwards way to treat ppl with type 1.

calfmuscle · 26-08-2020 10:59pm

Thanks banie1 really quite upset and sad about it. Never should have happened. I loved playing.

CramCycle · 26-08-2020 11:11pm

I'd also be going through Sports Ireland as well, and if possible, fire a shot across the bough of your welfare officer (your club should have one). Who is your clubs Covid 19 officer, check in with them, they should have one and they should have completed the sports Ireland and Sport specific training. Having done the same myself, they sound bang out of line. Very poor form.

calfmuscle · 26-08-2020 11:25pm

CramCycle wrote: »

I'd also be going through Sports Ireland as well, and if possible, fire a shot across the bough of your welfare officer (your club should have one). Who is your clubs Covid 19 officer, check in with them, they should have one and they should have completed the sports Ireland and Sport specific training. Having done the same myself, they sound bang out of line. Very poor form.

I'm the teams covid officer...... ironically I was working on the weekend they brought this in and had a meeting about it. I feel things would have been different if I was there. I've 3 organisations saying its out of line, but good idea to approach sports ireland. I feel so disrespected and un-valued.

naasrd · 27-08-2020 8:51am

Gremlinertia wrote: »

naasrd - do not adjust anything without medical advice, medical advice is not allowed on this site

No, absolutely no. I will adjust MY meds as I see fit. You must remember that Metformin among other treatments are relatively new. From the ‘60s and even later, we are still in the learning process. What works for me works for me. I’m not of the old “cap in hand” school where doctors know what’s best, some times they don’t. With Diabetes they only know what we tell them, nothing more. And all we can tell them is what works for us. As far as my GP is concerned I could be talking about life on Mars as she’s has no clue about diabetes. Please refrain from giving medical advice on adjusting. You are merely a moderator, you’ll do well to remember that.

ohnonotgmail · 27-08-2020 9:11am

naasrd wrote: »

No, absolutely no. I will adjust MY meds as I see fit. You must remember that Metformin among other treatments are relatively new. From the ‘60s and even later, we are still in the learning process. What works for me works for me. I’m not of the old “cap in hand” school where doctors know what’s best, some times they don’t. With Diabetes they only know what we tell them, nothing more. And all we can tell them is what works for us. As far as my GP is concerned I could be talking about life on Mars as she’s has no clue about diabetes. Please refrain from giving medical advice on adjusting. You are merely a moderator, you’ll do well to remember that.

if your gp knows nothing about diabetes then find another one. and nobody has given you medical advice. you asked for medical advice and were told you would not be receiving it here. they are telling you to seek medical advice. your "i know better" attitude could land you in serious trouble. if you drive i assume you are telling your insurance company that you are self-medicating? they would find that information very useful.

CramCycle · 27-08-2020 9:45am

calfmuscle wrote: »

I'm the teams covid officer...... ironically I was working on the weekend they brought this in and had a meeting about it. I feel things would have been different if I was there. I've 3 organisations saying its out of line, but good idea to approach sports ireland. I feel so disrespected and un-valued.

I'm our covid and welfare/child safety officer. There are times, when for a persons safety and that of those around them, they have to be excluded until a medical professional says it is safe. I have had to deal with that once and it was an awful process. Is this one of those cases, not even close, you have said you are okay and you understand the risks, presuming you are not posing any more of a risk to others than any other person. Nothing here suggests that is the case, hope it works out.

Galbin · 27-08-2020 8:29pm

naasrd wrote: »

No, absolutely no. I will adjust MY meds as I see fit. You must remember that Metformin among other treatments are relatively new. From the ‘60s and even later, we are still in the learning process. What works for me works for me. I’m not of the old “cap in hand” school where doctors know what’s best, some times they don’t. With Diabetes they only know what we tell them, nothing more. And all we can tell them is what works for us. As far as my GP is concerned I could be talking about life on Mars as she’s has no clue about diabetes. Please refrain from giving medical advice on adjusting. You are merely a moderator, you’ll do well to remember that.

Sadly, that is how it is with most endocrine disorders. We have to go by our own bodies. Everyone is different. Personally, doctors have failed me many times. So to me, a doctor is like a contractor I consult with as opposed to a parental figure who is infallible.

calfmuscle · 27-08-2020 10:09pm

CramCycle wrote: »

I'm our covid and welfare/child safety officer. There are times, when for a persons safety and that of those around them, they have to be excluded until a medical professional says it is safe. I have had to deal with that once and it was an awful process. Is this one of those cases, not even close, you have said you are okay and you understand the risks, presuming you are not posing any more of a risk to others than any other person. Nothing here suggests that is the case, hope it works out.

Thanks for the support, its been a bit miserable. As I said iv left the team and took your advice and rang sports Ireland. They gave me an email address iv to contact. Ill chase up the IHREC too. Left a voicemail with them today.

wiz569 · 01-09-2020 1:24pm

Hi guys, can i please ask a quick question,

My Wife has been a diabetic for 45 yrs now but just recently her LTI book has been replaced with the new LTI card, my question is that with the book her prescription is written into it and renewed every 6 months but what happens with the card?

Does she need to get a separate written prescription and bring that with her to the chemist as well as the card?

If so it seems counter productive as the book covered both things in one.

TIA

kippy · 01-09-2020 3:56pm

Mail for DI today - assume most are on this mailing list etc.

Diabetes Ireland hosting its second education webinar specifically for people with Type 2 diabetes

“Managing Type 2 Diabetes During Illness”

Diabetes Ireland is hosting its second education webinar on Thursday 10 September at 7pm. This webinar is specifically for people with Type 2 diabetes and their families. We are delighted to have Ms Ailish Condron, Clinical Diabetes Nurse Specialist, Diabetes Integrated Care, Beaumont Hospital as our guest presenter. The webinar will offer guidance on managing your condition if you become ill during the COVID 19 pandemic. Ailish will cover a range of topics including:

Current HSE guidelines on Covid-19
Importance of good glycaemic control
Planning ahead, being prepared and informed if you become unwell
General guidelines on managing Type 2 Diabetes during illness
Managing your medication
When to seek help
Useful resources

For this series of 3 patient education webinars, Diabetes Ireland is being supported by Novo Nordisk who will host the webinars on its meeting platform. To register for this Type 2 Diabetes webinar click https://register.gotowebinar.com/register/9107488318579599115. Ms Clair Naughton, Diabetes Ireland who will moderate the webinar said “this is a free event and an opportunity for you to receive the most up to date information available on current guidelines and effective Type 2 diabetes management. I hope people will avail of this free event.”

Type 1 Webinar

Our third webinar will be specifically for people with Type 1 diabetes and will feature Dr Kevin Moore, Consultant Endocrinologist as our guest presenter. We are still finalising details with Kevin but hope to host it in late September. Further details will be issued in due course.

Almost 200 people attended our first webinar to hear Dr Austin Bayley, Senior Clinical Psychologist, Mater Hospital speak on ways of managing stress and coping effectively during COVID-19 as a person with diabetes. Feedback was very positive with a range of comments such as:

“Thank you so much for this webinar. It has helped and encouraged me to really face my stress properly as so many people don’t realise, I am hurting inside. I found your piece on meditation and journaling very helpful and I plan on trying to meditate and write down my thoughts.”

“Having just sat through the webinar, I would like to thank all involved. It was straightforward, easily understandable and very helpful. I’m so glad the psychology of having diabetes is finally being addressed.”

For those who may have missed it, our first webinar with Dr Bayley is available to view at the following link https://attendee.gotowebinar.com/recording/8179457623611563022.

Thank you so much for your continuing support of Diabetes Ireland in these difficult times. Stay healthy and well.

Xofpod · 02-09-2020 10:37am

wiz569 wrote: »

Hi guys, can i please ask a quick question,

My Wife has been a diabetic for 45 yrs now but just recently her LTI book has been replaced with the new LTI card, my question is that with the book her prescription is written into it and renewed every 6 months but what happens with the card?

Does she need to get a separate written prescription and bring that with her to the chemist as well as the card?

If so it seems counter productive as the book covered both things in one.

TIA

I haven't been upgraded to the card yet but I've always gotten a separate prescription every 6 months which I leave behind the counter with the pharmacist and pop in monthly to pick up my supplies. I don't think there should be any practical impact for your wife, just a separate piece of paper to hand over instead of the LTI book.

Xofpod · 02-09-2020 10:39am

Retina screening back up and running. Went for my scan last week, results in the post today. Got the all clear, which I'm delighted with, as my HbA1C went a bit mental over Lockdown.....

calfmuscle · 02-09-2020 10:43am

Xofpod wrote: »

Retina screening back up and running. Went for my scan last week, results in the post today. Got the all clear, which I'm delighted with, as my HbA1C went a bit mental over Lockdown.....

I went out to the advanced screening clinic a few weeks ago and got my results with still some retinopathy. I rang them for more info and she was really reassuring. Told me it's only the tiniest bit and its getting smaller. The only reason they are watching it because of were it is. Feel so much better after getting more information. Well worth speaking to a person rather than just depending on the letter.

ohnonotgmail · 02-09-2020 10:45am

Xofpod wrote: »

I haven't been upgraded to the card yet but I've always gotten a separate prescription every 6 months which I leave behind the counter with the pharmacist and pop in monthly to pick up my supplies. I don't think there should be any practical impact for your wife, just a separate piece of paper to hand over instead of the LTI book.

i normally get my prescription in my LTI book but for the last renewal that wasn't possible due to covid. my gp was emailing prescriptions to a pharmacist instead. Once the pharmacist has your LTI number there are not issues.

Gael23 · 03-09-2020 10:36pm

Are glucose monitors provided free or do you have to buy that yourself?

banie01 · 03-09-2020 10:48pm

Gael23 wrote: »

Are glucose monitors provided free or do you have to buy that yourself?

They can be purchased, but don't!
Anytime I've needed one I've given the specialist nurses on the local diabetes unit a shout and they've sorted me out.
There is almost always a Rep from one of the glucometer suppliers present at the hospital clinics too and likely will be again whenever those clinics start up again. Who will be doling out meters to patients.

The important thing is to ensure that you get whichever test strips are needed added to your prescription.
Test strips can cost up to €50 for 50 if one hasn't gotten an LTI book/card sorted.

Also important to take a note of what testing regime is needed.
A T2 on oral meds will be limited to specified amounts based on your treatment regime.
1200 if you carry a hypoglycemic risk, 600 if you don't.
With patients anywhere on the Diabetic spectrum on insulin afforded "unlimited" test strips.

Getting set up with a Good GP and Diabetes team will get you sorted.

If you are stuck in the meantime?
I have a spare onetouch verio you are welcome to, can even throw you on some test strips with it too.

Gael23 · 04-09-2020 8:11am

banie01 wrote: »

They can be purchased, but don't!
Anytime I've needed one I've given the specialist nurses on the local diabetes unit a shout and they've sorted me out.
There is almost always a Rep from one of the glucometer suppliers present at the hospital clinics too and likely will be again whenever those clinics start up again. Who will be doling out meters to patients.

The important thing is to ensure that you get whichever test strips are needed added to your prescription.
Test strips can cost up to €50 for 50 if one hasn't gotten an LTI book/card sorted.

Also important to take a note of what testing regime is needed.
A T2 on oral meds will be limited to specified amounts based on your treatment regime.
1200 if you carry a hypoglycemic risk, 600 if you don't.
With patients anywhere on the Diabetic spectrum on insulin afforded "unlimited" test strips.

Getting set up with a Good GP and Diabetes team will get you sorted.

If you are stuck in the meantime?
I have a spare onetouch verio you are welcome to, can even throw you on some test strips with it too.

No it’s grand don’t worry.

I’m interested in the ones that have a sensor in your skin and you don’t need to draw blood such as the freestyle libre. Does the HSE contribute towards those? ones

[Diabetes] General Chat and Support Thread

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