[Diabetes] General Chat and Support Thread

calfmuscle · 04-09-2020 8:18am

Gael23 wrote: »

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

Yes I have the dexcom g6 and its covered on my lti so I dont pay anything.

banie01 · 04-09-2020 9:12am

The freestyle Libre is covered for only a very specific cohort of diabetics on LTI at present.
It's quite restricted.
Currently it's covered for patients who are

The FreeStyle Libre system has been reimbursed, as of the 3rd of April 2018, for some patients aged between 4 and 21 years.

^Eligibility Criteria:

1. Type 1 Diabetes

2. Children and young adults aged 4 - 21 years

3. Patients using multiple daily injections of insulin or insulin pump therapy

4. Patients who have increased blood glucose testing requirements (≥8 times daily)

5. Frequent episodes of diabetic ketoacidosis (DKA) or hypoglycaemia which have included hospital admissions

6. Patient is not pregnant.

If you are a Type 1 diabetic on an insulin pump, the associated cgm for that pump will be covered/included AFAIK.

Continuous CGM is a game changer, but access to it is based on either the Freestyle criteria above.
Or the CGM additions to insulin pump.

If you don't meet the criteria.
You can buy the freestyle and claim back 20% of the cost on your med1 yearly.

I stand to be corrected by those currently using CGM and more experienced with the foibles of the system.

kippy · 04-09-2020 9:40am

banie01 wrote: »

The freestyle Libre is covered for only a very specific cohort of diabetics on LTI at present.
It's quite restricted.
Currently it's covered for patients who are

If you are a Type 1 diabetic on an insulin pump, the associated cgm for that pump will be covered/included AFAIK.

Continuous CGM is a game changer, but access to it is based on either the Freestyle criteria above.
Or the CGM additions to insulin pump.

If you don't meet the criteria.
You can buy the freestyle and claim back 20% of the cost on your med1 yearly.

I stand to be corrected by those currently using CGM and more experienced with the foibles of the system.

Would be interested to hear the costs for anyone paying for this at the moment?

ohnonotgmail · 04-09-2020 9:50am

kippy wrote: »

Would be interested to hear the costs for anyone paying for this at the moment?

you can see the prices here https://www.freestylelibre.ie/starter-pack.html

banjobongo · 04-09-2020 10:10am

ohnonotgmail wrote: »

you can see the prices here https://www.freestylelibre.ie/starter-pack.html

I looked this up and a sensor costs 60 euros but the site does not say how many sensors are in a pack. So I dont know if its one, two or more in a pack. If it just one in a pack and if you can get 14 days out of you would two packs per month = 120 euros. I cant afford 120 euros a month unfortunately!

calfmuscle · 04-09-2020 10:43am

banjobongo wrote: »

I looked this up and a sensor costs 60 euros but the site does not say how many sensors are in a pack. So I dont know if its one, two or more in a pack. If it just one in a pack and if you can get 14 days out of you would two packs per month = 120 euros. I cant afford 120 euros a month unfortunately!

If you are type 1 you should qualify unless you have perfect control. Talk to your team.

ohnonotgmail · 04-09-2020 11:05am

banjobongo wrote: »

I looked this up and a sensor costs 60 euros but the site does not say how many sensors are in a pack. So I dont know if its one, two or more in a pack. If it just one in a pack and if you can get 14 days out of you would two packs per month = 120 euros. I cant afford 120 euros a month unfortunately!

a single sensor in a pack.

banjobongo · 04-09-2020 12:29pm

calfmuscle wrote: »

If you are type 1 you should qualify unless you have perfect control. Talk to your team.

yes IM Type one but as far as I now if you are an adult with TYpe 1 you are not entitled to this in Ireland. I would LOVE to have it if Im wrong, any more info on why you think an T1 adult in Ireland can have it for free?

ohnonotgmail · 04-09-2020 12:35pm

calfmuscle wrote: »

If you are type 1 you should qualify unless you have perfect control. Talk to your team.

banjobongo wrote: »

yes IM Type one but as far as I now if you are an adult with TYpe 1 you are not entitled to this in Ireland. I would LOVE to have it if Im wrong, any more info on why you think an T1 adult in Ireland can have it for free?

at the moment only available to those under 21. The HSE did a review of the use of the Libre but they have never released the report. Michael Lowry asked as recently as July 30th for an update and none was forthcoming

https://www.oireachtas.ie/en/debates/question/2020-07-30/1075/?highlight%5B0%5D=freestyle&highlight%5B1%5D=libre&highlight%5B2%5D=freestyle&highlight%5B3%5D=libre#pq-answers-1075

banjobongo · 04-09-2020 12:45pm

ohnonotgmail wrote: »

at the moment only available to those under 21. The HSE did a review of the use of the Libre but they have never released the report. Michael Lowry asked as recently as July 30th for an update and none was forthcoming

https://www.oireachtas.ie/en/debates/question/2020-07-30/1075/?highlight%5B0%5D=freestyle&highlight%5B1%5D=libre&highlight%5B2%5D=freestyle&highlight%5B3%5D=libre#pq-answers-1075

thanks, that is what I thought. If you are an adult, its not available free, you need to pay for it yourself, so that is 120 e per month every month = around 1500 a year. A lot of money. Pity, I would love it.

I was lucky enough to have a free trial for a few weeks and they made a big difference.
If I win the lotto I will get them!

Gael23 · 04-09-2020 1:13pm

Couldn't sustain that expense forever either.

So if you are not in the eligibility criteria for this does that mean you are stuck with the old finger prick option or are there others?

calfmuscle · 04-09-2020 1:28pm

If your consultant writes a letter outlining the medical need its free. Id recommend the dexcom over the libra. If your control isn't perfect and a cgm could improve it, that is the need justified. My hba1c went form 7.5ish to 6.5 and has stayed in or around that for 2 years now. I love it.

Gael23 · 04-09-2020 1:29pm

Yeah I follow a guy on Instagram and he has the dexcom g6

calfmuscle · 04-09-2020 1:53pm

Gael23 wrote: »

Yeah I follow a guy on Instagram and he has the dexcom g6

Yeah I love it, definitely a game changer. No more being high for a few hours before you even realise it. Plus alarms at night. The reports and suggestions it makes when it picks up a pattern are great too. My nurse can log in and see all my data also. So she can remotely monitor me in real time. Its just brilliant. Can't even believe some people still have to keep blood sugar diaries etc

banie01 · 04-09-2020 2:22pm

calfmuscle wrote: »

If your consultant writes a letter outlining the medical need its free. Id recommend the dexcom over the libra. If your control isn't perfect and a cgm could improve it, that is the need justified. My hba1c went form 7.5ish to 6.5 and has stayed in or around that for 2 years now. I love it.

Do you have the dexcom feeding data to a pump?
Or are you still managing insulin by injecting?

The CGM all seem to have a fairly marked effect on control for all shades of diabetes.
Would love to get into the specifics of the HSE numbers on benefit of prolonged tight HbA1C control versus overall cost of care per patient.

Does going with CGM give enough scope to allow savings or even cost neutral?
If it does, even on the comfort factor alone for patients, surely it's worth it?

If it doesn't?
I'd hope they will show their figures, rather than push back the review again.

Gael23 · 04-09-2020 2:34pm

calfmuscle wrote: »

Yeah I love it, definitely a game changer. No more being high for a few hours before you even realise it. Plus alarms at night. The reports and suggestions it makes when it picks up a pattern are great too. My nurse can log in and see all my data also. So she can remotely monitor me in real time. Its just brilliant. Can't even believe some people still have to keep blood sugar diaries etc

Is the dexcom covered by the HSE?

CramCycle · 04-09-2020 2:47pm

Gael23 wrote: »

Is the dexcom covered by the HSE?

Yes, for all ages once you have a suitable pump, but it can take awhile to get. The main part of it is provided through your healthcare provider via the HSE and then you get the insertion packs via the LTI in your pharmacist

calfmuscle · 04-09-2020 3:13pm

CramCycle wrote: »

Yes, for all ages once you have a suitable pump, but it can take awhile to get. The main part of it is provided through your healthcare provider via the HSE and then you get the insertion packs via the LTI in your pharmacist

I'm still on injections. I had a pump but I ended up in dka a few times so went back to injections years ago. Yes the hse pay for my dexcom. If the tslim tandem pump ever comes over here ill try that for sure. Its automatic mode looks incredible!!

Would love to know the cost factor also Cram but good luck trying to get the data. From experience working in the hse I bet you they have no idea of the cost benefits.

CramCycle · 04-09-2020 4:18pm

The HSE are like alot of departments where if the financial benefit isn't in the immediate term they can't understand. You then end up with people who have smart ideas who end up having a trial by media until the HSE via politics backs down. It's quite upsetting, and in that regard, diabetics do better than most. Glad to hear the pump isn't a necessity, as the CGM is the game changer.

banie01 · 08-09-2020 4:04pm

From early July.

banie01 wrote: »

Had my HbA1C back today.

I was expecting a dip in my control due to some other concurrent medical issues, let alone lockdown.

It's gone out to 59, it's my 1st one over 50 in 4yrs or so and then was due to a medical issue too.

Had an Hba1c on the 1/9 and already have it brought back down to 52.
That's despite being a long period of being fairly inactive due to ongoing pain and mobility issues. Those issues are improving, finally got hold of a specialist who is getting a good handle on my issue and it's making a difference.

I have an appointment with my endo towards the end of Oct and I'm hoping to be back to mid 40 range then.

It's great to be seeing some improvement, my PMS pointed out that even without restricted movement that chronic pain issues very often has a bad affect on BG control.
Triggers the stress response and leads to prolonged elevated BG.

ebbsy · 14-09-2020 1:03pm

Just an update regarding me eyes.

Was unable to travel to Newcastle to get a scan and the Noctura mask.

Maker of the mask posted it to me this time after a phone consultation with Newcastle.

Had an outpatients appointment in the Eye and Ear this morning. First with them in over 2 years.

The outcome was that I am at the same good position as 2 years ago, which means the mask has to be working.

They do a fantastic job in Newcastle and here.

banie01 · 23-09-2020 5:32pm

Had an issue with the Onetouch reveal app not syncing data on a new phone over the past few days.
Went through the usual clear data, restart, reinstall palaver but the sync timed out everytime.

Fired an email to their support late Monday, in the meantime I managed to sort the issue out.
They rang me back today, fully ready to walk me through the foibles of getting the app running on a rooted android!
The girl on the other end of the phone had pulled info from xdaforum on the potential issue and other US diabetic forums and was ready to get this problem solved.

Told her I'd sorted it, and how but thanked her for her time and professionalism.

Well done to the Onetouch support team.
Really was a great demonstration of customer service and support.
I know many aren't fans of their meter but for me the verio flex and the app are a good fit and I'm in no rush to change until libre or similar becomes available on LTI.

graflynn · 25-09-2020 11:31am

Gael23 wrote: »

Is the dexcom covered by the HSE?

Yes, I've had Dexcom through the HSE for 5 years. It's based on clinical need but if you are attending a pro-technology consultant and team they're not too strict with the criteria. Sometimes you have to fight for it though.

This might be helpful for you before you have this conversation with your team - https://bloodsugartrampoline.com/blog/2020/9/22/cgm-versus-freestyle-libre

banjobongo · 25-09-2020 7:20pm

graflynn wrote: »

Yes, I've had Dexcom through the HSE for 5 years. It's based on clinical need but if you are attending a pro-technology consultant and team they're not too strict with the criteria. Sometimes you have to fight for it though.

This might be helpful for you before you have this conversation with your team - https://bloodsugartrampoline.com/blog/2020/9/22/cgm-versus-freestyle-libre

If Dexcom is available through the HSE in Ireland, is the FreeStyle Libre also available?

banie01 · 26-09-2020 11:01am

graflynn wrote: »

Yes, I've had Dexcom through the HSE for 5 years. It's based on clinical need but if you are attending a pro-technology consultant and team they're not too strict with the criteria. Sometimes you have to fight for it though.

This might be helpful for you before you have this conversation with your team - https://bloodsugartrampoline.com/blog/2020/9/22/cgm-versus-freestyle-libre

Great post and info.
Must give your blog a follow too, seems quite good.

banjobongo · 27-09-2020 11:26am

Any body know if you can get Dexcom through the HSE, on the basis of:

1/adult
2/Type 1
3/Im injecting my insulin every day, ie IM not on a pump and I dont think I want to be on a pump...

ddarcy · 28-09-2020 3:28pm

banjobongo wrote: »

Any body know if you can get Dexcom through the HSE, on the basis of:

1/adult
2/Type 1
3/Im injecting my insulin every day, ie IM not on a pump and I dont think I want to be on a pump...

There’s a bit of a checklist to get one. If you’re hypo unaware you’ll get approved (be forewarned that this other other implications with driving etc).

You can also convince your doctor as well. For instance I’m very active, cycling, weight lifting, 5a side etc. So you could get it for that as your blood sugars could fall quickly.

Honestly talk with the diabetic nurses. They well know all the ways to get one.

Buford T. Justice XIX · 29-09-2020 7:46pm

I booked in for my Flu shot tomorrow but there appears to be a delay or shortage of some kind in delivery of the vaccine. I must contact the clinic in the morning to check they have received the delivery before they can confirm they have a shot for me.

The procedure is changed now as they come out to give the shot in the car rather than us going in.

I said I'd mention it for those that may want to get it early, there may be some delays.

kippy · 29-09-2020 10:08pm

Buford T. Justice XIX wrote: »

I booked in for my Flu shot tomorrow but there appears to be a delay or shortage of some kind in delivery of the vaccine. I must contact the clinic in the morning to check they have received the delivery before they can confirm they have a shot for me.

The procedure is changed now as they come out to give the shot in the car rather than us going in.

I said I'd mention it for those that may want to get it early, there may be some delays.

Speaking with my GP there today and they are getting very limited supplies and prioritising the over 70s currently, he reckons twill be end of October before they have their full quota in.
So yeah. Defo call ahead. I don't mind waiting another few weeks.

pew · 01-10-2020 5:26pm

Quick question for those who inject.

Do any of you have any pain at your injection site sometimes?

I just have a bit of pain where I usually inject once a week and to be honest I keep forgetting to change up the site. Without even thinking I keep going for the left hand side.

banie01 · 01-10-2020 6:15pm

Not rotating your injection for insulins can lead to lipohypertrophy or lipodystrophy.
I'm not sure if the SLP-1 injectables have the same effect but it's good practice to rotate the injection sites.

If you inject into your stomach, think of it like a clock face and move on an "hour" with each jab. Also remember to not inject too close to your navel.
If you inject in your thigh or upper arms, it does tend to be much sorer but rotation is still important.

pew · 01-10-2020 8:05pm

banie01 wrote: »

Not rotating your injection for insulins can lead to lipohypertrophy or lipodystrophy.
I'm not sure if the SLP-1 injectables have the same effect but it's good practice to rotate the injection sites.

If you inject into your stomach, think of it like a clock face and move on an "hour" with each jab. Also remember to not inject too close to your navel.
If you inject in your thigh or upper arms, it does tend to be much sorer but rotation is still important.

Made the mistake of being too close to the navel once...oh never again.

I'll definitely rotate next week. Seemingly a side effect for ozempic is abdominal pain...the joys

banjobongo · 02-10-2020 10:10am

quick question re CGM, through the HSE - Im thinking of asking my diabetes team about applying for one. Im a Type 1 adult. My guestion is, what implicatons, if any, are there re your driving license/ability to drive? In other words, in order to get a CGM through the HSE would this impact on having a driving license/being allowed to drive?
If so, I dont think I will bother....
Would be grateful for a reply from somebody who, like me, is a TYpe 1 and who has enquired about getting a CGM through the HSE?
Thanks!

CramCycle · 02-10-2020 10:14am

banjobongo wrote: »

quick question re CGM, through the HSE - Im thinking of asking my diabetes team about applying for one. Im a Type 1 adult. My guestion is, what implicatons, if any, are there re your driving license/ability to drive? In other words, in order to get a CGM through the HSE would this impact on having a driving license/being allowed to drive?
If so, I dont think I will bother....
Would be grateful for a reply from somebody who, like me, is a TYpe 1 and who has enquired about getting a CGM through the HSE?
Thanks!

I have a CGM through the HSE, never made a jot of difference to my driving or insurance. I said what had to be said to get the CGM to my Diabetes team. To my insurance company I told the truth (good control and no issues). I do find it handy when driving in that I leave my pump on the centre console and my partner picks it up to look at my levels every now and again which is handier than pulling over to test every 45 minutes.

Buford T. Justice XIX · 02-10-2020 10:16am

banjobongo wrote: »

quick question re CGM, through the HSE - Im thinking of asking my diabetes team about applying for one. Im a Type 1 adult. My guestion is, what implicatons, if any, are there re your driving license/ability to drive? In other words, in order to get a CGM through the HSE would this impact on having a driving license/being allowed to drive?
If so, I dont think I will bother....
Would be grateful for a reply from somebody who, like me, is a TYpe 1 and who has enquired about getting a CGM through the HSE?
Thanks!

I'm on CGM with a pump and it has no effect on your driving licence. I think there's a bit of a crackdown in the last few years on getting 10 year licences so I'm told I'll have to renew every 3 years when my current 10 year licence expires.

banjobongo · 02-10-2020 10:56am

Buford T. Justice XIX wrote: »

I'm on CGM with a pump and it has no effect on your driving licence. I think there's a bit of a crackdown in the last few years on getting 10 year licences so I'm told I'll have to renew every 3 years when my current 10 year licence expires.

thanks. Its just that some feedback I have had is that in order to show you are an exceptional case to get the CGM (without a pump) you need to show that you are suffering from hypos and poor control and I was afraid that this might impact on your driving license, but I cant get a clear yes or no answer....

Harry Palmr · 05-10-2020 10:10am

Just got a notification of a phone consultation. To have ready blood sugar dairy, med list, any questions. But they also included a bloods dept document, presumably they just put that in by rote rather than expect me to get bloods taken.

MrMacPhisto · 05-10-2020 10:39am

Harry Palmr wrote: »

Just got a notification of a phone consultation. To have ready blood sugar dairy, med list, any questions. But they also included a bloods dept document, presumably they just put that in by rote rather than expect me to get bloods taken.

I was similar position in May. Im a patient in Beaumont clinic. I rang the Diabetes Team to enquire. They asked me to attend for bloods/urine at the blood department as per usual 10-14 days before Clinic appointment if I was comfortable doing so. There was no issue, I was in and out of blood department in 5 mins.

My appointment was over the phone with one of the Diabetes Nurses and they had all my latest results. Prepare yourself for the appointment. They will ask you the usual questions. Have a good think of anything you might like to ask them.

Snake Plisken · 05-10-2020 11:06am

Buford T. Justice XIX wrote: »

I'm on CGM with a pump and it has no effect on your driving licence. I think there's a bit of a crackdown in the last few years on getting 10 year licences so I'm told I'll have to renew every 3 years when my current 10 year licence expires.

Wow didn't know that about the Driving Licence as my 10 year one expires at end of year, renewal every 3 years is going to be a pain.

Harry Palmr · 05-10-2020 11:10am

MrMacPhisto wrote: »

I was similar position in May. Im a patient in Beaumont clinic. I rang the Diabetes Team to enquire. They asked me to attend for bloods/urine at the blood department as per usual 10-14 days before Clinic appointment if I was comfortable doing so. There was no issue, I was in and out of blood department in 5 mins.

My appointment was over the phone with one of the Diabetes Nurses and they had all my latest results. Prepare yourself for the appointment. They will ask you the usual questions. Have a good think of anything you might like to ask them.

Cheers the letter didn't reference the need to get bloods taken, anyway I'll need to confirm my availability for the phone call so I'll mention it.

ddarcy · 05-10-2020 11:18am

Snake Plisken wrote: »

Wow didn't know that about the Driving Licence as my 10 year one expires at end of year, renewal every 3 years is going to be a pain.

I’ve been told the same, every 3 years. I know that is the standard in the UK anyways. It’s not official here, but looks to be more prevalent in usage.

I believe if they classify you as hypo unaware there can be issues with driving. But I would say is more of as grey area right now. But it could lead to losing your license more easily.

banie01 · 05-10-2020 11:24am

ddarcy wrote: »

I’ve been told the same, every 3 years. I know that is the standard in the UK anyways. It’s not official here, but looks to be more prevalent in usage.

I believe if they classify you as hypo unaware there can be issues with driving. But I worked day is more of as grey area right now. But it could lead to losing your license more easily.

This, there isn't really any grey area. There is a requirement to notify the NDLS if you are on sulphonylurea,medication that actively effects blood glucose levels or on an Insulin it must be notified to the NLDS.
Being hypo-unaware can severely impact what and if you can drive.

RSA have a very good leaflet on it here.
https://www.google.com/url?sa=t&source=web&rct=j&url=https://www.rsa.ie/Documents/Licensed%2520Drivers/Diabetes%2520and%2520Driving%25202016.pdf&ved=2ahUKEwj-g7DLnZ3sAhXsURUIHZkwBWgQFjACegQIARAB&usg=AOvVaw2iDpFhNV9UnUQvLEgPj_0n

thehorse · 09-10-2020 11:12pm

Hi All,

I’ve been getting treatment for retinopathy in my left eye and found out today that I’ve a touch of it in my right eye now too.
I’ve been getting injections in my left eye and will also have to have them in the right now as well.
My vision is excellent.

I’m frightened by it to be honest and am wondering if anyone else is getting injections in both eyes ?

Thanks

Slime Princess · 10-10-2020 2:30pm

Does any one know if metformin extended release is covered either by lti or the medical card? Had a bit of a shock going into the pharmacy and being charged almost €50 for it.

banie01 · 10-10-2020 2:51pm

Slime Princess wrote: »

Does any one know if metformin extended release is covered either by lti or the medical card? Had a bit of a shock going into the pharmacy and being charged almost €50 for it.

Its covered by both, but if you are prescribed it as a diabetic it's covered on the LTI scheme under core list F.

If you have a medical card, it's covered as per usual GMS scheme rules.

Slime Princess · 10-10-2020 3:55pm

banie01 wrote: »

Its covered by both, but if you are prescribed it as a diabetic it's covered on the LTI scheme under core list F.

If you have a medical card, it's covered as per usual GMS scheme rules.

I was told that it wasnt covered by either because its formulation is different to regular metformin therefore its use was "off licence". Pharmacist was very insistent it was "1000% not covered".

I've severe gastro issues and ibs on top of that so its been difficult to tolerate regular metformin. I have only been prescribed it since last month and didn't have to pay anything extra last time, but this time was told i need to pay extra. I also have a sinus infection and an angry screaming baby with me so i left it, but I really don't have €50+ to spend on this every month. I don't know what other treatment options are if i can't take metformin at all.

echo beach · 10-10-2020 6:42pm

Slime Princess wrote: »

I was told that it wasnt covered by either because its formulation is different to regular metformin therefore its use was "off licence". Pharmacist was very insistent it was "1000% not covered".
.

It is off license so isn’t on the Core List but will be covered if on LTI under a special approval process. It may take a few working days.
The whole system is so complex with so many exceptions to the general rules that even the admin staff in the payment unit don’t always give pharmacists the correct information and it can take several phone calls to get things sorted.

banie01 · 11-10-2020 1:00pm

echo beach wrote: »

It is off license so isn’t on the Core List but will be covered if on LTI under a special approval process. It may take a few working days.

Thanks for that, honestly was not aware of that.
It's a strange one IMO that the xr formulation is off license.

Is the XR more only licensed for PCOS or similar conditions then?
Medical card would still cover the script tho?

echo beach · 12-10-2020 11:23pm

banie01 wrote: »

It's a strange one IMO that the xr formulation is off license.

Is the XR more only licensed for PCOS or similar conditions then?
Medical card would still cover the script tho?

Medicines licensing in Ireland often has more to do with commercial demand than medical logic. Many first line treatments and medicines that have been used for decades aren’t available in a licensed form. A license costs a lot of money and takes a lot of time.

Most unlicensed medicines, including Metformin XR, are not covered by the medical card. Some are covered for particular LTI indications. There is a discretionary hardship scheme which isn’t part of the usual pharmacy contract that may or may not approve supply in particular cases. Approval can take weeks or months.

In summary, the whole system is dysfunctional. Pharmacists spend hours trying to sort out supply and find ways to get unlicensed and off licensed medicines paid for. Many of the patients who need them are sick children, oncology patients, palliative care patients or those with less common conditions but the HSE leaves it to busy professionals to work out if and how expensive medicines can get to those who need them.
Rant over.

banie01 · 13-10-2020 10:31am

Thanks for that very frank explanation of the current state of play Echo Beach.

[Diabetes] General Chat and Support Thread

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