[Diabetes] General Chat and Support Thread

CramCycle · 12-04-2012 2:32pm

BlackEdelweiss wrote: »

Cramcycle, have you heard much about brittle diabetes in your research?

I have heard the phrase but never encountered it before(or so I thought until I skimmed a few papers), it would appear that the definitions of who has it are pretty varied from someone with no control through their own doing (maybe forced through other issues) to those who cannot control their sugars regardless. I presume you got your data from a quick google but I would warn you to be careful.

From the few papers I have glanced over, the causes are various from person to person but identifiable in the majority of cases. Go into Google scholar (not google, that will lead to alot of americans with blogs blabbing on about something they know little about) for a clearer picture.

What you should focus on in my opinion, is identifying the underlying issue, be it psycological, issues with absorption, abnormal insulin resistance, overdosing insulin, overcompensating etc.

Personally, the only reason I imagine alot of people do not get diagnosed with it is because they hide it well (I remember people making up results to fill their book before going into the clinic as a child, myself included on a few occasions).

Diabetics are quite prone to mental health issues, particularly when their bloods are not running well, wether the hen or the egg came first is a discussion for another time.

I have anecdotal evidence galore but am tired at the moment (concidentally from high blood sugars that cannot be explained) so I will leave that alone, that and I am a scientist and anecdotes are a dangerous thing.

http://qjmed.oxfordjournals.org/content/89/11/839.full.pdf+html

http://care.diabetesjournals.org/content/8/1/12.full.pdf+html

Haven't read through the above but the abstracts looked promising.

tbh · 12-04-2012 2:52pm

my friends dad had brittle diabetes, he was the first person I talked to after I was diagnosed. In his case, the term "brittle" referred to the unpredictability of it - for me, for example, 10g CHO causes my BS to rise by about 2, and is accounted for with 2 units of insulin, give or take, every time. 1 Unit of insulin will cause my BS to fall by about 2 units, give or take, every time.

for him, 10g CHO could cause his sugars to rise by up to seven or eight, or not at all. Sometimes he could have a meal, take 3 units and be high as a kite, or he could have the same meal, take 3 units, and collapse from a hypo.

Sounds like a nightmare tbh.

BlackEdelweiss · 12-04-2012 3:27pm

tbh wrote: »

for him, 10g CHO could cause his sugars to rise by up to seven or eight, or not at all. Sometimes he could have a meal, take 3 units and be high as a kite, or he could have the same meal, take 3 units, and collapse from a hypo.

Sounds like a nightmare tbh.

That sounds like me alright. Last week I had a ham salad sandwich for my dinner, I wasent very hungry so I reduced my dose to 6 units instead of 8, still thought it was bit high but I was going to monitor it in case I dropped quickly. 2 hours later I was feeling a bit strange, checked my blood, I was 21.4. The last 2 days has been similar, low enough at breakfast, 2 hours later in the high teens. Not sure what is going on lately.
It dosent make life easy.
It was the consultant who said it could be brittle diabetes, not me self diagnosing.

CramCycle · 12-04-2012 3:39pm

BlackEdelweiss wrote: »

It was the consultant who said it could be brittle diabetes, not me self diagnosing.

I didn't think it was but I have had cases like this myself all the time. When I was younger it was quite prevalent whereby there was no way to predict where my bloods would go, I even remember a nurse giving out to me when I was admitted to hospital as I must have been doing something behind their back.

I find now that my control is generally good but when I have flare ups of other issues I suffer from that I lose my control almost instantaneously and dramatically.

Basically my point was don't brush it off as "I have brittle Diabetes, there is nothing I can do about it". If your consultant thinks that is the end of it, maybe some research into possibilities and suggestions for checks on your return visit might be a good idea? It could very well be that there is nothing to be done but its worth exhausting every and all possibilities.

CathyMoran · 12-04-2012 7:10pm

I have had brittle diabetes since surgery I had over 5 years ago, am not overweight but am female. I get a thing called dumping sydrome which makes life interesting too. I have to test a lot.

Redmal · 13-04-2012 11:11pm

I've always wondered how people cope with their diabetes. I have had it for 16 long, horrible years and have never, ever come to terms with it. I would love to be able to deal with it the same way other people do but I just can't allow myself to. I do consider myself to be very lucky however as I have never been seriously ill with it, I have always managed to keep myself on the periphery of being really bad (at the moment my HbA1c is about 7.4, I don't know what the percentage is, it's been better and it has also been way worse).

One of my huge problems with it is that my legs are covered with Necrobiosis Lipoidica and I have had terrible ulcers. Nothing thankfully for a long number of years. Do many other people have this problem? Every time I'm at a clinic, a doctor takes a picture of it and all I want to do is shove their camera phones down their stupid picture taking throats! But seriously, is this really not that common?

Royal Legend · 14-04-2012 11:09pm

even though this is a great thread, it might be good to have a type 2 thread as well (me being a bit selfish here) as some of the stuff u types ones talk about does not relate to type twos, whats other type twos thoughts on this?

CathyMoran · 14-04-2012 11:31pm

How about every poster says at the begining of their post their type?

ElBarco · 14-04-2012 11:38pm

I think two threads might be the way to go. Although there is alot of common ground there is enough of a difference that a bit of streamlined discussion wouldn't do any harm.

Royal Legend · 14-04-2012 11:41pm

CathyMoran wrote: »

How about every poster says at the begining of their post their type?

Type 2

I like that idea, keep everything together in the one thread and just stick type 1 or type 2 at the beginning of each reply

ElBarco · 14-04-2012 11:42pm

Royal Legend wrote: »

Type 2

I like that idea, keep everything together in the one thread and just stick type 1 or type 2 at the beginning of each reply

Are we not just creating two threads of conversations but with an added complication of filtering a tag?

CathyMoran · 15-04-2012 8:52am

I feel that we have some things in common, eg meters etc but sometimes I am wondering what type people are.

Redmal · 15-04-2012 10:00am

Surely the only real difference between the two is just the medication though really? All side effects, related illnesses, blood sugar readings and targets etc are all the same.

CathyMoran · 15-04-2012 10:09am

Redmal wrote: »

Surely the only real difference between the two is just the medication though really? All side effects, related illnesses, blood sugar readings and targets etc are all the same.

Type 1. They are totally different illnesses, type 1 diabetes is an autoimune disease and people who have it may have other ones. I produce no insulin what so ever, type 2 produce insulin.

BlackEdelweiss · 15-04-2012 11:18am

I suppose the people to ask are the type two's. If they want a forum of their own then they should have it rather than feel they are being thrown out of this forum by the type 1's.
Maybe have a poll for type 2's only to vote in.

CathyMoran · 15-04-2012 11:22am

BlackEdelweiss wrote: »

I suppose the people to ask are the type two's. If they want a forum of their own then they should have it rather than feel they are being thrown out of this forum by the type 1's.
Maybe have a poll for type 2's only to vote in.

T1 Personally I feel that we can learn a lot from one another but we do have different illnesses.

Redmal · 15-04-2012 11:23am

CathyMoran wrote: »

Type 1. They are totally different illnesses, type 1 diabetes is an autoimune disease and people who have it may have other ones. I produce no insulin what so ever, type 2 produce insulin.

:rolleyes:
What I mean is that both types suffer high blood sugar levels, low blood sugar levels, both benefit from good diet and weight control, both run the risk of heart problems, limb problems, eye problems and both need long term support, care and encouragement from other people. I know the technical differences.

Edit: T1

CathyMoran · 15-04-2012 11:29am

T1 I can eat anything as long as I balance my insulin, I do not know the diet of T2. Personally weight has never been an issue for me but I have been told that if I became overweight that my sensitivity to insulin might reduce. Yes, my blood sugars have to be watched but the illnesses are totally different.

The_Conductor · 15-04-2012 11:40am

Redmal wrote: »

:rolleyes:
What I mean is that both types suffer high blood sugar levels, low blood sugar levels, both benefit from good diet and weight control, both run the risk of heart problems, limb problems, eye problems and both need long term support, care and encouragement from other people. I know the technical differences.

Edit: T1

The commonality between T1 and T2 (and T1.5) is an issue with producing normal levels of insulin. This is a symptom though in many cases, rather than the defining factor (which is why you hear lots of stories about Type 2 (and 1.5) diabetics claiming to be able to control their condition through dietary and/or exercise regimens)).

Both diabetic types *can* suffer high and low blood sugars- however a type 1 insulin dependent diabetic is far more likely to be affected by hypoglycaemia (lows) while a type 2 is more likely to be affected by hyperglycaemia. This is borne out by the different approaches in diabetic clinics (and in the likes of maternity hospitals) towards the different types of diabetes- they no longer accept a 'one size fits all' approach- particular care is taken to ensure Type 1's in particular aren't slotted onto a HbA1c table which looks at long term trends- which would be the norm for a Type 2 (or in the case of pregnant women- those diagnosed with gestational diabetes).

A healthy diet and a moderate exercise regime- are very useful tools for *anyone* with a chronic illness- not just diabetics- in the case of diabetics, it is no longer the case that the one size fits all prescription is doled out to everyone by any means whatsoever.

To be honest- where many endochrine used to view Type 2 as a subset of diabetes in general- the current position is that it is increasingly being viewed by most professionals as a distinct condition- as opposed to a subset (this is esp. following the recent tragic cases involving Type 1s).

BlackEdelweiss · 15-04-2012 11:43am

As someone who has been treated for both types I can say in my experience that the only things that have changed in my life since my original diagnoses is that I can eat more freely now I am taking insulin. All the associated worries and problems are still the same, I go to the same clinic, see the same diabetic nurse, use the same blood monitor, still have loads of hypos and highs.
I dont see it that we have different illnesses just different causes to the same illness. Our resistance/sensitivity to insulin may differ but from what I can see on this forum no two peoples diabetes is the same whether they be type 1 or type 2.

Redmal · 15-04-2012 11:51am

BlackEdelweiss wrote: »

As someone who has been treated for both types I can say in my experience that the only things that have changed in my life since my original diagnoses is that I can eat more freely now I am taking insulin. All the associated worries and problems are still the same, I go to the same clinic, see the same diabetic nurse, use the same blood monitor, still have loads of hypos and highs.
I dont see it that we have different illnesses just different causes to the same illness. Our resistance/sensitivity to insulin may differ but from what I can see on this forum no two peoples diabetes is the same whether they be type 1 or type 2.

That's the point I've been trying to make!! Now I'm being given a lesson on the differences in Diabetes and the fact that they are totally different! I really didn't want to get into a whole debate thing about it all.

BlackEdelweiss · 15-04-2012 12:17pm

I think people are forgetting the title of this forum. [Diabetes] General Chat and Support Thread.
Its not a medical science journal, its is a support thread where you can come and ask a question, have a laugh at some of the lighter side of things, get a bit or reassurance when things are not going great.
Lets not turn it into an elitist "we're sicker than you" type thing. We all have a life changing illness that will probably result in the premature death of some of us.
This is a great place to come for advice on diabetes, why try and fix something that is not broke.

calfmuscle · 15-04-2012 12:39pm

BlackEdelweiss wrote: »

I think people are forgetting the title of this forum. [Diabetes] General Chat and Support Thread.
Its not a medical science journal, its is a support thread where you can come and ask a question, have a laugh at some of the lighter side of things, get a bit or reassurance when things are not going great.
Lets not turn it into an elitist "we're sicker than you" type thing. We all have a life changing illness that will probably result in the premature death of some of us.
This is a great place to come for advice on diabetes, why try and fix something that is not broke.

I think you might be getting the wrong idea here. Nobody is being elitist and certainly not "we're sicker than you". (thats actually quite insulting)
However, I think there are as many similarities as there are differences.
You are correct it is a support thread and that is why I felt type 2's would get MORE support if they had their own thread. Just because there could be 2 threads would not mean a person cannot post in both. But they could get better information on type 2 specific problems if they had their own thread to really discuss it in. And also have the benefit of discussing the general issues that the types have in common in here if they wish to do so.
There is also a good bit of misinformation in the general public, as this is public forum I would like to see both types distinguished/differentiated.

BlackEdelweiss · 15-04-2012 2:02pm

calfmuscle wrote: »

But they could get better information on type 2 specific problems if they had their own thread to really discuss it in. And also have the benefit of discussing the general issues that the types have in common in here if they wish to do so.

I'm not trying to get into an argument here, there is enough of that all over boards but if we go down that path this thread will have to be split into 3 sections, Type 1, Type 2 and General. Why should Type 1 get to keep the main thread?

I found this forum a great help when I was considered a type 2 and have found it a great help since being considered a type 1.
That is my only point.
If type 2's want their own forum give it to them but lets not cast them out because they are not the same as us.

ElBarco · 15-04-2012 2:04pm

smccarrick wrote: »

To be honest- where many endochrine used to view Type 2 as a subset of diabetes in general- the current position is that it is increasingly being viewed by most professionals as a distinct condition- as opposed to a subset (this is esp. following the recent tragic cases involving Type 1s).

What tragic cases are you referring to? (Unrelated to the discussion - just curious)

CramCycle · 15-04-2012 2:09pm

BlackEdelweiss wrote: »

Lets not turn it into an elitist "we're sicker than you" type thing.

ON a cheerier note, I thought of this when I read that:

https://www.youtube.com/watch?v=Xe1a1wHxTyo

BlackEdelweiss · 15-04-2012 2:09pm

ElBarco wrote: »

What tragic cases are you referring to? (Unrelated to the discussion - just curious)

I was wondering that aswell.

CathyMoran · 15-04-2012 4:05pm

T1 I wish that people would just always say their type. There is different advice in most cases for the diffferent types. For instance I can have toffees if I want to, am not sure with Type 2's...

BlackEdelweiss · 15-04-2012 6:21pm

Type 2's can have toffee's as well, not too many of them though, just like type 1's.
The dietary requirements of type 2 diabetes are more limiting than for a type 1. You have a set limit of carbs that you can eat per meal or per day, all depending on your body type, activity level etc. If you want to have a treat later on you can eat less earlier on and build up the points so to speak.
I personally found type 2 the harder to live with, you are very restricted in your diet and I was constantly hungry and wanting more food. I lost a lot of weight as a type 2 and had less energy.
Type 1 was a release for me, I could eat more of what I like, still within limits but things like pizza which send my blood sky high for some reason are now back on my menu, albeit very rarely.
Given the choice I would be a type 1 diabetic.

CathyMoran · 15-04-2012 6:36pm

BlackEdelweiss wrote: »

Type 2's can have toffee's as well, not too many of them though, just like type 1's.
The dietary requirements of type 2 diabetes are more limiting than for a type 1. You have a set limit of carbs that you can eat per meal or per day, all depending on your body type, activity level etc. If you want to have a treat later on you can eat less earlier on and build up the points so to speak.
I personally found type 2 the harder to live with, you are very restricted in your diet and I was constantly hungry and wanting more food. I lost a lot of weight as a type 2 and had less energy.
Type 1 was a release for me, I could eat more of what I like, still within limits but things like pizza which send my blood sky high for some reason are now back on my menu, albeit very rarely.
Given the choice I would be a type 1 diabetic.

T1 You say that you are a type 1, does that mean that you have the autoimune one? I would consider Type 1 is where you have the autoimune one, not that just that you are on insulin. How many units a day do you take on average. I take 2-4 in the morning, 2-3 at morning break (high GI 15g carb coffee) , then 4-10 (upto 80 g of carbs) at lunch but it does vary depeneding on food and about 6 at dinner then 8-9 launtus depending on my time of the month. I founf pregnancy a lot easier though the responsibility for an always wanted child was huge.

BlackEdelweiss · 15-04-2012 7:32pm

When I was diagnosed I was treated as a type 2 but I dident have the typical symptoms of it, nor did I have the typical symptoms of type 1. It was described as late/slow onset type 1. I was on oral medication for a year and a half but it gradually became less effective. Exactly a year ago I was diagnosed as a type 1 diabetic, the auto-immune type, I have the test results to prove it.
I take 4 units of novarapid in the morning, 4 at lunch and 6 in the evening then 16 levemir at night. My consultant said he thinks I have brittle diabetes as I have never been able to control it with any type of medication and my reaction to insulin is so sensitive and unpredictable. So if if I have to classify myself I would have to say I have type 1.5 brittle diabetes.

The_Conductor · 15-04-2012 7:37pm

BlackEdelweiss wrote: »

I'm not trying to get into an argument here, there is enough of that all over boards but if we go down that path this thread will have to be split into 3 sections, Type 1, Type 2 and General. Why should Type 1 get to keep the main thread?

If there is an acceptance that there is a distinct difference between type 1 and type 2 diabetes- which does appear to be the case- perhaps its not an unreasonable question. There are various discussions of particular pertinence to type 1s (such as the postgrad survey in Trinity at the moment as an example)- which are not applicable to type 2s- and similarly there is a new EU funded campaign aimed at type 2s, as opposed to type 1s. Yes- you have a group of people referred to as type 1.5s- actually in an Irish context there are more recent 1.5s diagnosed than there are type 1s- however the advice and support from either type1 and T2 would be applicable (of course keeping in mind the unique nature of how any particular person is affected).

BlackEdelweiss wrote: »

I found this forum a great help when I was considered a type 2 and have found it a great help since being considered a type 1. That is my only point. If type 2's want their own forum give it to them but lets not cast them out because they are not the same as us.

Personally I think it would be great to have this as a general thread- and specific threads pertinent to T1s, T2s etc- but thats just my tuppence.

Redmal · 15-04-2012 7:45pm

I do believe that type 2 is more restrictive as far as diet is concerned as type 1's can adjust their insulin accordingly if they fancy a little treat after dinner or if they just aren't as hungry as they usually are. However, I have found from experience that weight can tend to creep up the more you mess with insulin so it is generally best to stick to a pretty regimented diet, although we all have our weaknesses!

CathyMoran · 15-04-2012 7:48pm

T1 I was diagnosed with it when I was 10 but when I had my oesophagus removed I suffered from dumping syndrome (food can litterally rush through me) which makes life complicated. My insulin intakes are highly variable as a result. I am supposed to eat several times a day but end up eating small high calorie meals. I did have the honeymoon period for a while before all my islets of langerhans gave up and was off insulin for a year after diagnosis. In those days you had to use a syringe and animal insulin to which I had a bad allergic reaction and had to take antihistamines to counter, so I was always tired in school as they did not have the next generation of antihistamines then. Having it as a child has coloured my views as i was bullied for drinking diet drinks as "only fat people drink them" and I was not fat, still am not. There is so much ignorance about diabetes. Having said that there are far worse things.

Eurovisionmad · 15-04-2012 8:08pm

T1
I presume there's no way to re-open a SHARPAK once it's locked? (I'm an idiot and locked it by mistake while messing with it) and it's the Public Health Nurse who you give it to, to dispose of it yes? I've only been diagnosed a week so I'm still getting a handle on all of this!

5live · 15-04-2012 8:15pm

Redmal wrote: »

I do believe that type 2 is more restrictive as far as diet is concerned as type 1's can adjust their insulin accordingly if they fancy a little treat after dinner or if they just aren't as hungry as they usually are. However, I have found from experience that weight can tend to creep up the more you mess with insulin so it is generally best to stick to a pretty regimented diet, although we all have our weaknesses!

T2 but i can eat what i want, within reason, as i have plenty of opportunity to burn it off. And i vary my insulin to suit my readings and expected work load. So i use a T1 regime to treat T2? Not being argumentative (well just a bit;)) as i had forgotten which i had until this T1vT2 issue came up.

I would be against splitting as there seems to be more T1s on the thread, judging from the last few pages, and i think the T2 thread would fade away leaving a T1 thread and nothing for the occasional lookin by a T2. Imo anyway

CathyMoran · 15-04-2012 8:34pm

Eurovisionmad wrote: »

T1
I presume there's no way to re-open a SHARPAK once it's locked? (I'm an idiot and locked it by mistake while messing with it) and it's the Public Health Nurse who you give it to, to dispose of it yes? I've only been diagnosed a week so I'm still getting a handle on all of this!

T1 It happened with mine - my husband had to use brute force to open it - not to be reccomended:P

Eurovisionmad · 15-04-2012 8:40pm

CathyMoran wrote: »

T1 It happened with mine - my husband had to use brute force to open it - not to be reccomended:P

Sounds like a possibility, I can't imagine the Public Nurse (he/she is the one I give it to yes?) would be too happy if I turned up with an almost empty box and asking for a new one!

The_Conductor · 15-04-2012 8:59pm

BlackEdelweiss wrote: »

What is a sharpak?

You dump your test strips and needles in it when you're cleaning out your kit. You're not supposed to dump them in the general refuse.

Eurovisionmad · 15-04-2012 9:06pm

smccarrick wrote: »

You dump your test strips and needles in it when you're cleaning out your kit. You're not supposed to dump them in the general refuse.

I was told I could dump my test strips in refuse, come to think of it they are covered in blood, probably best not to!

Meauldsegosha · 15-04-2012 9:08pm

Eurovisionmad wrote: »

Sounds like a possibility, I can't imagine the Public Nurse (he/she is the one I give it to yes?) would be too happy if I turned up with an almost empty box and asking for a new one!

Happened to me when I was first diagnosed as well. It was something new to play with so I had to test it out

. Brought it to the local health centre the next day and got a new one, no hassle.

Meauldsegosha · 15-04-2012 9:12pm

smccarrick wrote: »

You dump your test strips and needles in it when you're cleaning out your kit. You're not supposed to dump them in the general refuse.

I was told the sharps box was only for neddles not to put anything else in it. My test strips go the bin. The nurse showed me how to open the strip so part of the package stays intact and the blood side of the strip goes back in it.

The_Conductor · 15-04-2012 9:30pm

Meauldsegosha wrote: »

I was told the sharps box was only for neddles not to put anything else in it. My test strips go the bin. The nurse showed me how to open the strip so part of the package stays intact and the blood side of the strip goes back in it.

I was told glass vials, syringes, needles, test strips and alcohol wipes- could all be disposed in it- but not to go over the marked line under any circumstances. We have insulin, neocytamen and other injectable medications (Clexane etc) and their needles in the box).

As a vet I sit next to in work once said- if my wife and I were horses- he'd take both us out to the back yard and shoot us....... (no disrespect intended to poor Synchronised)........

triona1 · 15-04-2012 11:21pm

My 10 year old is type 1.I have done that also with the sharpak.You could just go to the chemist and get a new one from them,They do be smaller also and easier to store.The chemist might take the one you locked if its similar to the one's they use.Hope that help's.

Actually just saw smccarrick post on glass vials,Now you think your silly for locking your sharps box eurovisionmad.My son is 4 years ty1 so how do you dispose of the insulin in a vial if its been open/used up to the 5-6 week opened date.My son would never go through a full vial and he is on 3 injections a day.Do you just stick it in the sharps box,I'm very careful about what i'd pour down the sink.

calfmuscle · 15-04-2012 11:36pm

Does everyone have a sharps box? I've never had one, either has my dad (he is about 35 years type one) I do remember asking my pharmacy for one years ago and they said they didnt supply them.

Meauldsegosha · 15-04-2012 11:40pm

calfmuscle wrote: »

Does everyone have a sharps box? I've never had one, either has my dad (he is about 35 years type one) I do remember asking my pharmacy for one years ago and they said they didnt supply them.

Diabetic clinic in Beaumont hospital gave me one and told me to bring it to my local health centre when it was full and get a new one. How do you dispose of your neddles?

triona1 · 15-04-2012 11:41pm

Yep i was handed two huge one's when my son was 1st diagnosed leaving the hospital,At that time it took a year nearly to fill one,as he was only on one injection.I was told the chemist take them by the hospital or just to bring it back at his next visit,So i took it to the chemist and they said they could only take their own one's back.Maybe not all chemist do them.

triona1 · 15-04-2012 11:42pm

Was just about to ask the same question as Meauldsegosha

robinph · 15-04-2012 11:46pm

I never had sharps boxes until they started me on the pump. They send out huge ones in the post for me as the insertion things wouldn't fit in the regular sharps bins. I just hand them to the reception at the GP's as the pharmacy won't take the big ones.

calfmuscle · 16-04-2012 12:06am

Thanks guys,

When I was on injections I just capped the needles and binned them, I did have clipper thing for them about 12 years ago but that got lost at some point.

Im on the pump now and I just bin everything. The insertion needle has its own folding mechanism so people are protected from it and it is broken and unusable when it is binned. Everything else is just packaging.

[Diabetes] General Chat and Support Thread

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