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08-07-2018, 13:26   #31
Harry Palmr
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Fair bit of ignorance from jobsworths still out there. There was a very famous case (on boards.ie!) regarding if I recall rightly the confiscation of an insulin pack at a certain high profile festival event.
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08-07-2018, 15:27   #32
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Fair bit of ignorance from jobsworths still out there. There was a very famous case (on boards.ie!) regarding if I recall rightly the confiscation of an insulin pack at a certain high profile festival event.
Plenty of ignorance indeed. A son of mine who is type 1 had bother getting his bottle of Lucozade through a security check at a concert a couple of years ago. They relented a little by saying he could take the bottle in but without the cap but his girlfriend just fluttered her eye lashes and smiled at the security men and he was then told to go on.

In fairness he's been abroad a few times and never had any difficulty at the airports.
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08-07-2018, 15:34   #33
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A couple of questions:

Do you have many hypos and if so what time of the day are they generally occurring?

How do you find the medical support i.e. is there enough being done for you by way of clinic appointments, regular tests or assessments by your local GP practice or local hospital?

Do you feel that you know more about the condition (at times) than some of the so called professionals?

Finally and just as a FYI for you and other diabetics - are you aware of the woman who sued for discrimination in a case in NI a couple of days ago? Ever encountered anything like this yourself?
I'm being seen in Sligo University Hospital. I feel the "care" is lax to say the best. Every time I'm there, I have to go through my whole history again, as its nearly always a different person seeing me. They can't quite figure me out, as my blood sugars run somewhat high, especially in the morning, but my Hba1c (a measurement done through blood test, gives a snapshot over blood sugar control over a certain time period) is almost always perfect. Last time I was there it was a 6.7. 6.5 is the ideal.

With regard to knowing more than them, I feel that way certainly. My blood sugar could be perfect going to bed, and rise then before I wake up, giving me a high reading. They can't figure this out in sligo... There's something that's very well known called the Dawn Phenomenon that has all the hallmarks of what I'm experiencing. They've never heard of it. I've ended up making my own adjustments to insulin down through the years, without getting their advice. I kinda feel I know now what works for me.

I've got an insulin pump in sligo hospital. It's been there for 2 years, and they haven't given it to me yet. I know it's there for a fact - the manufacter sends me literature in the post semi regularly.

As for gp care - non existant. They expect the hospital to look after all the diabetes related stuff.

Hypos with me are almost always in the evening. I'll occasionally have them in the afternoon, but 9 times out of 10, it's after 6pm.

Thanks for that link - I read that earlier in the week. I read about the case someplace else and they mentioned the word disabled in it - I don't agree that diabetics should be covered under the blanked term of disabled (with the exception of those with limb loss, sight loss naturally)
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08-07-2018, 15:47   #34
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Oh ya, it gave me a right scare. I'm more worried about something like that happening to my kids now. I have 2 lads, aged 3 and 2.

When the youngest fella was 18 months, he woke a couple of mornings in a row showing signs of hypoglycemia. Of course he couldn't tell us, but when we tested his blood using my kit, his sugars were low.

Brought him to A&E, and after some testing / overnight stays, they told us it wasn't diabetes but something called Ketoic Hypoglycemia, something brought on due to common illness. That was scary, let me tell ya! I was beyond scared, and felt really guilty for some reason (As if i could control the genes passed on like!)
.


My son has ketotic hypoglycemia and we attend temple street metabolic unit . He is 14 now and has grown out of it . He was a severe case and had to be fed every 2 hours and admitted to local hospital if every got sick at all . We have had genetic testing the lot but the consultant was very clear it was nothing to do with regular diabetes etc and genetics for that .
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08-07-2018, 16:01   #35
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I'm being seen in Sligo University Hospital. I feel the "care" is lax to say the best. Every time I'm there, I have to go through my whole history again, as its nearly always a different person seeing me. They can't quite figure me out, as my blood sugars run somewhat high, especially in the morning, but my Hba1c (a measurement done through blood test, gives a snapshot over blood sugar control over a certain time period) is almost always perfect. Last time I was there it was a 6.7. 6.5 is the ideal.

With regard to knowing more than them, I feel that way certainly. My blood sugar could be perfect going to bed, and rise then before I wake up, giving me a high reading. They can't figure this out in sligo... There's something that's very well known called the Dawn Phenomenon that has all the hallmarks of what I'm experiencing. They've never heard of it. I've ended up making my own adjustments to insulin down through the years, without getting their advice. I kinda feel I know now what works for me.

I've got an insulin pump in sligo hospital. It's been there for 2 years, and they haven't given it to me yet. I know it's there for a fact - the manufacter sends me literature in the post semi regularly.

As for gp care - non existant. They expect the hospital to look after all the diabetes related stuff.

Hypos with me are almost always in the evening. I'll occasionally have them in the afternoon, but 9 times out of 10, it's after 6pm.

Thanks for that link - I read that earlier in the week. I read about the case someplace else and they mentioned the word disabled in it - I don't agree that diabetics should be covered under the blanked term of disabled (with the exception of those with limb loss, sight loss naturally)
Thanks for that.

My wife is pretty much like yourself with the long term bloods being okay but the daily testing can vary but usually downwards. Her hypos would also be mostly in the evenings and just recently she has decided (herself) to take a unit less of insulation at tea time. The similarity doesn't end there though. If there was such a thing as type 1.5 then you would both have it. Like yourself she's stuck between 1 and 2 but still has to inject 4 times daily and take tablets also.

Apart from eye tests she doesnt attend clinics as such. Our local GP practice are fairly good in that regard and look after her well.

I've a couple of sons with type 1 also and its amazing that unless they talk to a dedicated "diabetic nurse" or the likes then most other professional medics dont have much of a clue about diabetes which is really unacceptable. You can understand the ignorance of the general public but when dealing with health care professionals this should never be an issue.

No pump mentioned for my wife or sons yet so I must tell them to chase this up.
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08-07-2018, 17:35   #36
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Thanks for that.

My wife is pretty much like yourself with the long term bloods being okay but the daily testing can vary but usually downwards. Her hypos would also be mostly in the evenings and just recently she has decided (herself) to take a unit less of insulation at tea time. The similarity doesn't end there though. If there was such a thing as type 1.5 then you would both have it. Like yourself she's stuck between 1 and 2 but still has to inject 4 times daily and take tablets also.

Apart from eye tests she doesnt attend clinics as such. Our local GP practice are fairly good in that regard and look after her well.

I've a couple of sons with type 1 also and its amazing that unless they talk to a dedicated "diabetic nurse" or the likes then most other professional medics dont have much of a clue about diabetes which is really unacceptable. You can understand the ignorance of the general public but when dealing with health care professionals this should never be an issue.

No pump mentioned for my wife or sons yet so I must tell them to chase this up.
Thank you. Certainly chase up pumps - I thought they were supposed to give these to kids as standard now?

Have any of your family had the opportunity to try out a Continuous Glucose Monitor? I had a 2 week trial for the Libre Metre. Fantastic piece of kit
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08-07-2018, 18:00   #37
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Plenty of ignorance indeed. A son of mine who is type 1 had bother getting his bottle of Lucozade through a security check at a concert a couple of years ago. They relented a little by saying he could take the bottle in but without the cap but his girlfriend just fluttered her eye lashes and smiled at the security men and he was then told to go on.

In fairness he's been abroad a few times and never had any difficulty at the airports.
I've been abroad myself a few times, never had a bother. Always carry a doctors letter with me just in case though
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08-07-2018, 22:27   #38
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Thank you. Certainly chase up pumps - I thought they were supposed to give these to kids as standard now?
My 2 lads are grown men now so Im not sure what the position is in relation to providing pumps for adults these days. They were told some time ago that they would be assessed in the future so Im taking that as meaning that only the young and perhaps adults with regular stable readings would be eligible. But they havent heard any more about them.


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Have any of your family had the opportunity to try out a Continuous Glucose Monitor? I had a 2 week trial for the Libre Metre. Fantastic piece of kit
Actually one of the lads is only out of hospital a few days and he has one of these on his upper arm which was done in the hospital but it expires tomorrow. Apparently the replacements are something like €60 each and they only last 2 weeks and then the test strips are another €125 approx but it uses less strips than the older system.

The joys (and costs) of being a diabetic
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09-07-2018, 23:15   #39
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Actually one of the lads is only out of hospital a few days and he has one of these on his upper arm which was done in the hospital but it expires tomorrow. Apparently the replacements are something like €60 each and they only last 2 weeks and then the test strips are another €125 approx but it uses less strips than the older system.

The joys (and costs) of being a diabetic

@muffler - I think if they're U21 it'll qualify on the LTI... and surely the test strips are free on the LTI?
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09-07-2018, 23:32   #40
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@AMA...

Hi, I was diagnosed T1 on NYE16, aged 42.

Reading through the thread, it's disappointing that things you've encountered in your 8 years have not improved in in the last 1.5, in my experience.

IME, it's very much up to you to own the disease!

If I may ask, what's your regime... we all know us T1 love a bit of regularity. Think you mentioned 2:1 in the morning, how does that go through the day? Do you actively cut out carbs? How'd you handle pizza?

Did you do a DAFNE to get the ratio?
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10-07-2018, 17:15   #41
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@AMA...

Hi, I was diagnosed T1 on NYE16, aged 42.

Reading through the thread, it's disappointing that things you've encountered in your 8 years have not improved in in the last 1.5, in my experience.

IME, it's very much up to you to own the disease!

If I may ask, what's your regime... we all know us T1 love a bit of regularity. Think you mentioned 2:1 in the morning, how does that go through the day? Do you actively cut out carbs? How'd you handle pizza?

Did you do a DAFNE to get the ratio?
Ya my ratio is 2:1 in the morning and 1.5:1 at all other times. Sligo had me on 3:1 morning and 2:1 all other times - far too many hypos this way so I changed it myself. My long acting insulin (Tresiba), I take 64 units of this before bed

I don't actively cut out carbs. If anything, I eat more carbs in the evening than the morning.

As regards pizza, I've read to take half the dose required with the meal, wait a couple hours, then take the second half of the dose.

I don't really do that! I can be very bad for taking insulin with the evening meal. Sometimes it could be several hours after the meal before I take it. Naughty, I know!

I didn't do DAFNE, but I was shown the basics in a half hour crash course when I was being treated in St. Vincents
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10-07-2018, 23:49   #42
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@muffler - I think if they're U21 it'll qualify on the LTI... and surely the test strips are free on the LTI?
Yeah, the ordinary strips and glucometers are free to all age groups on LTI but the Continuous Glucose Monitor and the strips for that monitor (apologies if thats the wrong description of them) are not available on the lTI scheme for adults anyhow. Perhaps in the future they will be
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11-07-2018, 02:28   #43
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Yeah, the ordinary strips and glucometers are free to all age groups on LTI but the Continuous Glucose Monitor and the strips for that monitor (apologies if thats the wrong description of them) are not available on the lTI scheme for adults anyhow. Perhaps in the future they will be
Apparently they're free if you are aged up to 21. I'd say it'll be a phased system with everyone eventually included. Here's hoping anyhow, its such a handy system
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11-07-2018, 18:16   #44
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Great AMA, thanks for taking part. I've an 8-year old daughter, diagnosed before her 3rd birthday so am fairly well-versed in T1.
We try to educate folks we meet on what Type 1 is and how it comes about, do you get annoyed if asked "do you have the good type of diabetes" or do you just let it wash over you?

I've found a shocking level of ignorance about Type 1 in the general public (but don't get me wrong, I'd be up there had I not been brought into that world in 2013), is it the same in your experience?

I can't recommend the pump highly enough - you can tell it bolus for complex carbs like pasta and rice and it will take care of all that stuff for you, no need to inject half now / half later etc.
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11-07-2018, 18:19   #45
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I am hearing lots about ketogenic diets or LCHF (low carb high fat) as a treatment for diabetes. Eg. The swedish government is backing this

Have you heard anything about it in ireland? Has your endocrinologist ever said it to you?
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