[Diabetes] General Chat and Support Thread

jeffk

I had similar

My results were great, your flying, got them down etc. go back around January, jumped to 47, with 48 being diabetic. Why? Eh don’t know here’s tablets and well put you on waiting list for Loughlinstown weight place
Metformin

IF you get upset stomach, cramps etc, push the doctor to change you to another tablet. I was on them for a week or even less, Monday cramps etc, Tuesday got worse, rang doctor, ah stick it out. Friday both ends, cramps etc, into doctor at 9 for emergency appointment.

There’s LOADS of tables, I got changed to Forxiga and find it great, it’s a weight loss as well. Too much sugar and you pee a lot, defiantly better than the Metaformin side effects

gctest50

https://www.acs.org/content/acs/en/pressroom/presspacs/2017/acs-presspac-may-31-2017/sugar-sponges-sop-up-and-release-glucose-as-needed.html


The researchers nicknamed their treatment the "sugar sponge." It's an injected lectin-coated polymer vesicle that sopped up and bound glucose when glucose levels were high, and released the sugar when its concentrations were low in laboratory tests.

They also tested the sponge in mice with type-I diabetes, and within two days, they saw antidiabetic effects

.

ohnonotgmail

My doctor started me on a new drug called empagliflozin (trade name Jardiance). Is there anybody else on this medication? Anybody else try it but couldnt tolerate it?

banie01

ohnonotgmail wrote: »

My doctor started me on a new drug called empagliflozin (trade name Jardiance). Is there anybody else on this medication? Anybody else try it but couldnt tolerate it?

I went on to Jardiance earlier this year.
Was having some unpleasant gastro issues due to Victoza, and whilst the numbers were great the discomfort wasn't worth continuing with Victoza.

Regarding the Jardiance, I'm taking it with Janumet and Insulin.
Have heard some horror stories regarding the possibility of UTI's but to date I've not encountered any issue.
The mode of action is to cause excess sugar to be flushed with your urine, increasing the frequency of urination and (affecting any dipstick tests).

That said, I've not noticed any increase in my need to go Just more volume when i do.
One thing I'd advise watching is of course your hydration.

I'm @6months on it to date and my numbers are great(More due to basal insulin I'd think) and havent encountered anything I'd consider a side effect yet.
That said I was on Victoza for @18mths before i started suffering side effects.

ohnonotgmail

banie01 wrote: »

I went on to Jardiance earlier this year.
Was having some unpleasant gastro issues due to Victoza, and whilst the numbers were great the discomfort wasn't worth continuing with Victoza.

Regarding the Jardiance, I'm taking it with Janumet and Insulin.
Have heard some horror stories regarding the possibility of UTI's but to date I've not encountered any issue.
The mode of action is to cause excess sugar to be flushed with your urine, increasing the frequency of urination and (affecting any dipstick tests).

That said, I've not noticed any increase in my need to go Just more volume when i do.
One thing I'd advise watching is of course your hydration.

I'm @6months on it to date and my numbers are great(More due to basal insulin I'd think) and havent encountered anything I'd consider a side effect yet.
That said I was on Victoza for @18mths before i started suffering side effects.

thanks for the feedback. Can you remember how long it was before it started to make a difference? I only started on saturday and no difference so far. Did it help you lose weight?

banie01

ohnonotgmail wrote: »

thanks for the feedback. Can you remember how long it was before it started to make a difference? I only started on saturday and no difference so far. Did it help you lose weight?

It made no difference to my control, I was already in a good range. It was swapped in for a medication that was causing me gastric issues.
Going on to it rather than Victoza made a huge difference to my wellbeing as the side effects of that were brutal.
I've had no weight loss but I wasn't expecting any really as my weight isn't an issue.

arybvtcw0eolkf

Just a small update since my last posts.

Two weeks on Metformin now, and following dietary advice and I'm down from 120kg to 114kgs this morning.

I stay pretty fit mostly year round, but I've always hated jogging but I know from past experience that I lose most weight when I jog. So I cut back on the swimming and started a Couch to 5k' plan.

My medium term goal is a work 10k in October (An Costantoir 10k), and around the same time I compete in the Irish Judo Open (Masters) which I've won at +100kgs for the last three years, this year I'd like to come in under 100kgs (haven't done that since 2008).

I don't know what my GP has planned for me, I'm back with him in two weeks. Fingers crossed.

dontknowyet1

My son is using the Free Style Libre Sensor and finds it great, but i wonder would anybody know if there is a facility whereby when he goes low that his sensor reader could notify my phone that his reading is Low? He sometimes uses his phone to take a reading. As he goes low quite often, i am very concerned about him going low in bed at nightime.
Would appreciate if anyone has any comments.

CramCycle

dontknowyet1 wrote: »

My son is using the Free Style Libre Sensor and finds it great, but i wonder would anybody know if there is a facility whereby when he goes low that his sensor reader could notify my phone that his reading is Low? He sometimes uses his phone to take a reading. As he goes low quite often, i am very concerned about him going low in bed at nightime.
Would appreciate if anyone has any comments.

Alas no, the best you could hope for is that if you had the phone right beside it and set to scan but I am not sure how feasible that is.

on a side note, if he is having alot of lows, are you doing basal scans and reducing the background insulin?

dontknowyet1

CramCycle,
Thank you for your reply, he goes to his doctor regularly enough as far as i know and gets his insulin dosage adjusted when advised by doctor.
It looks like i will just have to continue to keep a close eye on him during the night.

CramCycle

dontknowyet1 wrote: »

CramCycle,
Thank you for your reply, he goes to his doctor regularly enough as far as i know and gets his insulin dosage adjusted when advised by doctor.
It looks like i will just have to continue to keep a close eye on him during the night.

I would be talking to your diabetes nurse. You probably should be adjusting the dose yourself at this point if he is having loads of hypos. Some hospitals wait for you to visit to adjust but it is generally seen as bad practice.

is he on a pump or injections? Basically if he goes to bed without eating and has no top up insulin (just his basal), his bloods should remain uniform over night. You will have to stay up for this and scan for him and check he is not having a hypo.

Use the libre to get an idea of the pattern. If you can see a hypo now, it is your basal that is the issue, and you need to either dial back the basal injection slightly or you need to tell the pump to drop back a bit just before this period. If you don't see a hypo now, it is your bolus (what you give him for food) that is incorrect. You need to adjust the ratio for this. Different times of the day can have different ratios, so don't dial it back everywhere.

C-Shore

dontknowyet1 wrote: »

My son is using the Free Style Libre Sensor and finds it great,  but i wonder would anybody know if there is a facility whereby when he goes low that his sensor reader could notify my phone that his reading is Low? He sometimes uses his phone to take a reading. As he goes low quite often, i am very concerned about him going low in bed at nightime.
Would appreciate if anyone has any comments.

I've tried to reply to this with a long reply but it's getting cut off. Think I hit a character limit. So I'm trying to split into 2:

I haven't used this, but some people have ordered it — I haven't seen any feedback/reviews yet: https://www.ambrosiasys.com/
It's essentially a Bluetooth add-on for the Libre that will then provide that constant connection and therefore alarms.

I will say though, having used the Libre and now a Dexcom G4, you're being sold short with the Libre. It has no alarms, and only retrospective data, so no indication of rising/falling blood glucose if you forget to scan/are asleep — and that is one of the biggest things for maintaining control.

Just to note for my calculations below, a Libre's life is hard-set at 14 days. A Dexcom sensor is listed as 7 days, but on average I get 21 days per sensor. So I've calculated the costs at my (and many others) average sensor life.
The Dexcom setup is a sensor and transmitter as opposed to the 1 piece Libre, just so you know what the figures below are.

C-Shore

Freestyle Libre

• Libre Initial Outlay is €60 for reader
• Annual cost of sensors is ~€1550.
• Total: €1610

Subsequent annual running costs: €1550


Decxcom G4

• Dexcom G4 Initial Outlay is €750 for reader and transmitter
• Annual cost of sensors (averaged lasting 3 weeks) is €1129
• Total: €1879

Subsequent annual running costs: €1459 (€1129 for sensors plus 1 new transmitter per year @ €330)


So essentially you're paying an extra €270 in the first year for the benefit of a real CGM that will give you alarms and also allow you to monitor your son remotely. After that, they work out much the same annually, if not cheaper for the Dexcom assuming every sensor lasts 3. Some sensors gave me 18 days, others gave me 29!
Plus the reliability of a Dexcom is far greater in terms of adhesive and hardware. Actual blood glucose accuracy is going to be subjective person to person, and meter to meter, but I am much happier with the accuracy of my Dexcom.

The other option you have is a Dexcom G5, where it connects directly to a phone, however since it is Bluetooth, the transmitter doesn't last as long. This means you have €1129 annually for sensors plus 4 new transmitters per year adding €1020 to give you a total of €2149.
So it's more expensive, but if you have the money and want the benefit of connecting to a phone, it may be worth it to you.

Obviously if you're happy with the Libre, the BluCon Nightrider I linked above is a cheaper option for now.

Also keep in mind that there is a good chance that 1 if not all of the current CGM solutions will end up on LTI within 2 years, possibly even 1 year. Current options being Dexcom G4/5, Freestyle Libre, and Medtronic Guardian Connect. In case that factors in to whether you (or anyone reading this) might like to make the investment right now.
As a side note, but while I'm in a writing mood, here's my reasoning:

• FDA have recently approved the G5 for dosing, meaning it can replace a blood glucose monitor excluding calibrations. However, the G6 is rumoured to only require 1 calibration per day. Other CGMs will likely match this and then the EU will follow the FDA ruling too.
• A CGM sensor currently costs on average €60 to consumers,which will of course be lower for the agreed HSE price
• A box of 50 test strips is from what I've been told about half that at around €25-€30
• Competition in the CGM sector will bring costs down further

So testing 4 times a day for a T1D is costing €60 per month with test strips I.E. 100 per month. This is even higher for a lot of people.
As soon as CGM comes down to €50 a month, plus €12 for once per day calibration with test strips, the cost becomes the same.

Then, while it is subjective and often argued about in terms of how the HSE quantify it; the reduced long term complications easing the lifetime cost of the disease on the HSE, makes it worth it to add to the LTI for T1D.
I doubt it'd be made available for T2D though.


Sorry for such a long comment!

CramCycle

C-Shore wrote: »

• FDA have recently approved the G5 for dosing, meaning it can replace a blood glucose monitor excluding calibrations. However, the G6 is rumoured to only require 1 calibration per day. Other CGMs will likely match this and then the EU will follow the FDA ruling too.
• A CGM sensor currently costs on average ?60 to consumers,which will of course be lower for the agreed HSE price
• A box of 50 test strips is from what I've been told about half that at around ?25-?30
• Competition in the CGM sector will bring costs down further

So testing 4 times a day for a T1D is costing ?60 per month with test strips I.E. 100 per month. This is even higher for a lot of people.
As soon as CGM comes down to ?50 a month, plus ?12 for once per day calibration with test strips, the cost becomes the same.

Then, while it is subjective and often argued about in terms of how the HSE quantify it; the reduced long term complications easing the lifetime cost of the disease on the HSE, makes it worth it to add to the LTI for T1D.
I doubt it'd be made available for T2D though.


Sorry for such a long comment!

I am not as convinced on the safety of the auto sensing and cut offs from the G5/6. I think it runs the risk of people becoming too complacent, although better than the current situation.

My understanding from someone who knows more than me is that Libre sensors will be covered within the year (actually next few months). This is of course hearsay and should not be read as guaranteed.

My old strips were about 45euro for one brand and 55 for another, this was not too long ago but may have come down since then.

For me at the minute, I use one pack of strips a week, so roughly (45x50) 2250 per year. In an ideal world I would require one sensor a month and about two packs of strips per month ((60*12)+(90*12))which works out at 1800 per year. This said if they made the libre sensors covered completely, I would be on 2 a month (120X12) 1440, plus one pack of strips a month (45*12) 540, so a total of 1980.

Either way, financially, CGM is a no brainer, without even going into the benefits to the HSE over time with increased glucose control.

C-Shore

Yeah, within the next few months sounds right, as it seems to be that after the summer is when the LTI/HSE review things. I was in touch with Novo Nordisk about Fiasp and they said they are presenting this to the HSE at the moment, and decisions are out "after the summer". On that though, it seems a cert to be added as the cost is the exact same as NovoRapid — I'm really looking forward to swapping to that.
I was also asking Omnipod about that being added, and they said the same thing. So it must be the time that they review things. So the Libre is probably the same.
Additionally, I know that Dexcom are pushing to be added if the Libre is added! I'm sure they'll both have to agree a similar price for total running costs.

Yeah your calculations are what I would agree with. I know the guidelines for T1D is actually unlimited use, but I'm sure the HSE consider 4 as an average. Especially since those of us testing >4 times per day are balanced out by those testing less frequently.
On a Libre you probably wouldn't even use one box of strips per month if you aren't verifying readings. If there's a v2 of it, I'd say that will have an improved MARD that would reduce a lot of the inaccurate readings.

uli84

talking about money - does Enlite sensors really cost like 50 Euro each? I'm in shock, I reckon the cure will never happen, also how on Earth the hospitals are not putting people on Dexcom instead? (seen calculations above of the yearly cost being in the region of 2000 eu.)

CramCycle

Looks like Dexcom sensors have got the nod. Nothing official yet but my application went through and has been added to my LTI. I suspect it will be a bit like the pump initially with applications having to go through your specialist to the HSE, rather than just getting them to throw it on your script but no harm in asking if you are already on a Dexcom

banjobongo

I recently had my 3rd three month / Hba1c reading , which was 53 mmol.
(I was diagnosed with Type 1 diabetes last June 2016 as a 53 year old man)
Blood pressure they said was perfect. The consultant thinks that 53 is a good reading and says its my target, and that he thinks Im coming to the end of a “honeymoon” period as my levels of insulin being injected are gradually increasing.
So he is happy, but Im a bit dissapointed as my previous reading was 49 mmol, in April 2017, so to me it looks like Im getting worse....

CramCycle

Quick question for Dexcom users, is there anyway to disable that awful low BG alarm, or at least turn it to vibrate only. I nearly threw it out the window last night.

C-Shore

CramCycle wrote: »

Quick question for Dexcom users, is there anyway to disable that awful low BG alarm, or at least turn it to vibrate only. I nearly threw it out the window last night.

Aha the beeping when you go below 2.8? No.
You can set the vibrate profile, but once you go below 2.8, I think it's one alert of 4 vibrates, and then the next one is the beeping, and the beeps get louder I think after each alert.

The only other option would be to disable all low alerts I.E. removing the red line from your graph.

CramCycle

C-Shore wrote: »

Aha the beeping when you go below 2.8? No.
You can set the vibrate profile, but once you go below 2.8, I think it's one alert of 4 vibrates, and then the next one is the beeping, and the beeps get louder I think after each alert.

The only other option would be to disable all low alerts I.E. removing the red line from your graph.

I removed that, alert still goes off. Its not so much the alert it is that it takes ages for my bloods to come up if I don't want to overshoot and can resist the temptation to eat everything around me. I get it, I am having hypo, been at it for nearly 35years, have acknowledged your warning. Now go away.

Eurovisionmad

Does anyone know what the standard issue insulin pump from the HSE is at the moment? I got a Medtronic 715 almost 3 years ago & the 4 year warranty is out early next year & I'll be due for a replacement. The team also mentioned applying for a CGM enabled one but I'm just interested to see which one I might end up with by default!

calfmuscle

I have fallen out of routine with my hospital team over the last few years and haven't been into them in over 4 years. However I decided I really wanted a cbgm so booked a private appointment with another endo and asked for one. Here are 4 weeks later and the dexcom 4 arrives by post today. Is this the norm now a days?? I really thought it was going to be a battle to get one! So easy!!

jcrowbar

Do you have to pay for it yourself?

calfmuscle

jcrowbar wrote: »

Do you have to pay for it yourself?

No it's been funded by the hse. Happy days!

Eurovisionmad

calfmuscle wrote: »

No it's been funded by the hse. Happy days!

I know they've definitely added the Medtronic Enlite Sensor to the PCRS (GMS reimbursable) list, can't find any Dexcom on it but I suppose they must have loosened the purse strings for them!

feedthegoat

Can anyone recommend a consultant? Since my last consultant retired 4 years ago I have been without one. Please PM.

Buford T. Justice XIX

feedthegoat wrote: »

Can anyone recommend a consultant? Since my last consultant retired 4 years ago I have been without one. Please PM.

Letting us know where you live might help?:)

CramCycle

feedthegoat wrote: »

Can anyone recommend a consultant? Since my last consultant retired 4 years ago I have been without one. Please PM.

What hospital were you attached to? Did they not try and draft you onto another one?

Buford T. Justice XIX

There is an interesting Finnish trial on a vaccine against an enterovirus that seemingly cause more type1 diabetics in Finland than elsewhere and they hope to reduce the 6 fold increase in Type 1 diabetics in the future. Apparently the care for a child with diabetes costs about 1 million euro over their lifetime:eek:

https://yle.fi/uutiset/osasto/news/finnish_diabetes_vaccine_trials_to_start_in_2018/9730247