Type 1, slimming world and DAFNE - anyone else?

[Petrichor]

Wow! I'm so glad I stumbled on this thread!

I'm Type 1, for 16 yrs, and been on a pump just a few months, did DAFNE at the same time as getting the pump (as part of a study).

Done SW a few years back, but it never really did a lot for me as I was always confused when I hypo'd and ended up eating the cupboards (and almost started on the furniture at times too!)

My biggest issue was the implant. I had it for 2.5 years, and was around 10 - 11 stone when I had it put in, and gained 6 stone in 3 years! prior to the implant i was skimping on the insulin quite a bit tbh, but my resistance was very high and by the time I had it removed last month I was taking arouhnd 100u a day, (60-70 basal, 30-40 bolus). And I can honestly say I dont eat sweets, or massive amounts of carbs.

Since having it removed, I'm averaging 50 - 60 units every day so very happy with that!

So now I'm basing my knowledge of food and recipes etc from SW, but using a bit of Xenical to help me along the way. (theres massive shortages of it right now, so only taking 1 or 2 pills a day rather than the 3 you're meant to, so wont lose as quickly as some of the Xenical people usually do, but I'm glad to be losing and not gaining for the first time in almost 3 years!)

It's nice to see other people in the same sort of situation, not many people understand the juggling T1 is, especially when you have to diet, or take other meds into consideration.

 

[*Claire-Bear*]

Wow! I'm so glad I stumbled on this thread!

I'm Type 1, for 16 yrs, and been on a pump just a few months, did DAFNE at the same time as getting the pump (as part of a study).

Done SW a few years back, but it never really did a lot for me as I was always confused when I hypo'd and ended up eating the cupboards (and almost started on the furniture at times too!)

My biggest issue was the implant. I had it for 2.5 years, and was around 10 - 11 stone when I had it put in, and gained 6 stone in 3 years! prior to the implant i was skimping on the insulin quite a bit tbh, but my resistance was very high and by the time I had it removed last month I was taking arouhnd 100u a day, (60-70 basal, 30-40 bolus). And I can honestly say I dont eat sweets, or massive amounts of carbs.

Since having it removed, I'm averaging 50 - 60 units every day so very happy with that!

So now I'm basing my knowledge of food and recipes etc from SW, but using a bit of Xenical to help me along the way. (theres massive shortages of it right now, so only taking 1 or 2 pills a day rather than the 3 you're meant to, so wont lose as quickly as some of the Xenical people usually do, but I'm glad to be losing and not gaining for the first time in almost 3 years!)

It's nice to see other people in the same sort of situation, not many people understand the juggling T1 is, especially when you have to diet, or take other meds into consideration.

Bless ya honey!! that is ALOT of insulin WOW, before i went on my pump (jan this yr) i was on about 40 units a day so i cant even begin to imagine what it was like to be on 100 ... well done you bringing it right down .. i on about 20 units a day now with my pump, wonderful little things arent they

 

[Petrichor]

I am so pleased with mine, I am so forgetful, so all the reminders, and being able to see if i have taken my bolus is amazing!

I spent too many years not taking enough insulin, just to help keep the weight off, but regret it deeply now

I fell pregnant with an Hba1c of 14.9 and it scared the living pooh out of me! I dragged it 4wonto 7 within 3 months, but suffered retinopathy and neuropathy as a result. I will say that my little girl is the most perfect healthy child Ive ever known, so I must have done something right The little monkey literally saved my life... but thats another story for another night

so Chuffed to meet you all!

 

[Penguin_Hell]

I am so pleased with mine, I am so forgetful, so all the reminders, and being able to see if i have taken my bolus is amazing!

I spent too many years not taking enough insulin, just to help keep the weight off, but regret it deeply now

I fell pregnant with an Hba1c of 14.9 and it scared the living pooh out of me! I dragged it 4wonto 7 within 3 months, but suffered retinopathy and neuropathy as a result. I will say that my little girl is the most perfect healthy child Ive ever known, so I must have done something right The little monkey literally saved my life... but thats another story for another night

so Chuffed to meet you all!

Was you always getting DKA with not taking enough Insulin?
That is what they have accused me of, not taking insulin to keep weight off. It's called Diabulimia, and is an eating disorder.

Although, i always take my insulin, and still get DKA.
One thing i've noticed though, i can't get pregnant. My consultant said it was to do with the DKA, because when i get that i don't get periods either.

I am so glad it hasn't affected your little girl

 

[Petrichor]

I seem to have had a 10 year-ish honeymoon period! I never had a DKA until 4 years ago, before that I had ketones - mod to large, but never DKA, and my DSN had mentioned MODY, which sent me off on one, tryintg to "prove" i wasn't actually T1.

I pent about 5 years taking a little bit of insulin every day (5 units before bed) and just drinking water and sleeping and getting up to pee! I'd have the odd night out, and would just dance for hours on end - people thought I'd taken something :/

I actually told my GP I had Diabulemia, and she said that as it wasnt recognised by the DMV IV, that there wasnt anything they could do, just speak to the dietician etc, but they just tell you to eat bread and rice and pasta FFS!

My husband and I were not using any contraception for 6 years, aas I was certain I couldnt fall pregnant with sucha high sugar level. It turned out that I could! But I'm convinced it was a complete fluke, and a mirical that saved my life

I also believe that being a total food nazi during my pregnancy did more good for me than any amount of years of preparation could have - did that comment make sense at all, lol ??? What I meant was that the hard work during pregnancy is what made the baby, the foundation of my Hba1c and the conditions of conception etc had little bearing on it.

 

[Penguin_Hell]

I seem to have had a 10 year-ish honeymoon period! I never had a DKA until 4 years ago, before that I had ketones - mod to large, but never DKA, and my DSN had mentioned MODY, which sent me off on one, tryintg to "prove" i wasn't actually T1.

I pent about 5 years taking a little bit of insulin every day (5 units before bed) and just drinking water and sleeping and getting up to pee! I'd have the odd night out, and would just dance for hours on end - people thought I'd taken something :/

I actually told my GP I had Diabulemia, and she said that as it wasnt recognised by the DMV IV, that there wasnt anything they could do, just speak to the dietician etc, but they just tell you to eat bread and rice and pasta FFS!

My husband and I were not using any contraception for 6 years, aas I was certain I couldnt fall pregnant with sucha high sugar level. It turned out that I could! But I'm convinced it was a complete fluke, and a mirical that saved my life

I also believe that being a total food nazi during my pregnancy did more good for me than any amount of years of preparation could have - did that comment make sense at all, lol ??? What I meant was that the hard work during pregnancy is what made the baby, the foundation of my Hba1c and the conditions of conception etc had little bearing on it.

I've never met anyone else who has had DKA too

My consultant TOLD me i had Diabulimia..but when you do actually take your insulin and you keep getting DKA, it's so stressful.
I still drink loads and go to the toilet loads during the night, so something still isn't right. But the Diabetes centre don't really care, they haven't even sent me a follow up from my last hospital admission, in Feb.

They even checked up on me to make sure i was still getting my insulin on my prescription. They just plain blank don't believe me that i am injecting my insulin! They even offered me counciling!

I've noticed different hospitals treat DKA differently too. One hospital treated me in intensive care (because i was in a coma), and i was there for a few weeks. But then a different hospital just put me in Emergancy Assessment Unit for a few days, even though i was still unconcious, and even worse than i was when i was in Intensive Care.

Also, i've noticed on the symptoms for DKA, there is 'Extreme Hunger', but whenever i have had it i can only eat Mash Potato with lots of butter. Usually because i get that nasty taste in the mouth and nothing tastes right, plus i feel so sick it's impossible to eat.
Do you ever lose appetite?

It's sad i'm actually excited about being able to talk to someone about this ! lol

 

[Petrichor]

It's not sad, I also find it very interesting! It's good to hear it from a person and not a Dr There is only so much that a book can teach about being diabetic.

I had a lot of symptoms which varied from time to time, but the thirst was my biggest one, I would lie in pain from bloating after drinking so much water!

I had obviously skimped on the insulin for a long time with ongoing thirst, could eat non stop, but never felt food - and it was always carb cravings - toast and butter! I could easily eat a loaf of bread toasted, 2 slices at a time (eating 1 lot whilst waiting on the toaster) and my friends would be shocked, cos I was only 10/11 stone, and I'm 5'11". My "secret" was water, of course they saw me drinking it like a marooned pirate lol I would just say that i could eat whatever i liked as long as I drank loads of water. Then I'd go home and sleep for 16 hours or so, only waking for peeing and having another drink. I would usually drink 3 litres in 1 sleep session.

When I "woke up" I was always still really tired, so I used ephidrine to help keep me awake during the day, then that would supress my apetite for a few days and I would lose another few lbs. When ephidrine became impossible to get hold of, I went to South Africa and got it there, then it stopped altogether and I did a lot of research into where it came from etc, managed to find a chinese herbalist who had a homeopathic version for asthmatics - of course I rushed round there and told her I had terrible asthma and managed to get some of that for a while. By that point I was convinced I had MODY and the insulin had turned me into a T1, so I started taking a chromium supplement, but it did nothing at all (except make my urine very expensive and chromium rich )

My first DKA was the week my brother died - I was in the middle of moving house, my home had been repossessed and my husband and I had lost all of our businesses and other properties, and on the night of my daughter's christening my brother jumped out of his 6th storey flat and died on impact. To be honest, my head was not really there, and between all of that and organising the funeral and move etc, I genuinely forgot to take my insulin.

I felt like cr*p, but wasn't really tuned in, and just forgot I was diabetic. I went for about 5-6 days before I was really ill and the next day, I went on a 300 mile round trip to pick up family from the ferry. I got sick in the car on the way home and literally pulled in and said I couldnt go any further. My aunt drove out and my uncle drove my car back for me. I got my sister to call nhs 24 and get me anti sickness pills, as I could not stop being sick. I refused to go to the hospital as my brother had been there. So out of hours saw me and said I should go in for the night, but I couldn't do it. Anyway, a few hours later I had to go to A&E and remember passing out in the waiting room. I was awake for a bit and transferred to another hospital, but had to check myself out for the funeral the next day, on the promise that I'd go straight back after the funeral. I had to sign a paper saynig that I accepted responsibilty for coming out of hospital aganist Dr's wishes. Though they were very understanding.

So in answer to your question I was not really conscious of being ill :/ but i do remember having really bad acid in my stomach, sickness, being hot all the time, really fast heartbeat. And yeah, the taste thing! eugh, not quite metallic, but something really not right, anything with butter tasted fine

Ive had 2 since, but through food poisoning and being stuck in the trap off being sick and not being able to eat or keep fluids down, so not wanting to inject. I had a terrible fear of hypos (my brother was also T1 and tried to kill himself by ODing on insulin several times under my care, and it done some damage to my trusting insulin and hypo awareness etc). On both occasions, I was ill before the DKA, so cant say at what point the symptoms got different, maybe when the heart rate and feeling like I was pumping syrup and not blood started?

This for me is the crux of the pump - I feel safe with a BG of 5-7, and admittedly it took me a few week s of results in the 20's then the teens ,but I'm confident that 3 jelly babies fixes a hypo, and that I wont die I used to come into DAFNE in morning and when my results had come down a few points, I kept saying "and I did not die!" only half joking tho

Wow, well done if you got this far, I never intended to but that turned into war and peace!

 

[Penguin_Hell]

It's not sad, I also find it very interesting! It's good to hear it from a person and not a Dr There is only so much that a book can teach about being diabetic.

I had a lot of symptoms which varied from time to time, but the thirst was my biggest one, I would lie in pain from bloating after drinking so much water!

I had obviously skimped on the insulin for a long time with ongoing thirst, could eat non stop, but never felt food - and it was always carb cravings - toast and butter! I could easily eat a loaf of bread toasted, 2 slices at a time (eating 1 lot whilst waiting on the toaster) and my friends would be shocked, cos I was only 10/11 stone, and I'm 5'11". My "secret" was water, of course they saw me drinking it like a marooned pirate lol I would just say that i could eat whatever i liked as long as I drank loads of water. Then I'd go home and sleep for 16 hours or so, only waking for peeing and having another drink. I would usually drink 3 litres in 1 sleep session.

When I "woke up" I was always still really tired, so I used ephidrine to help keep me awake during the day, then that would supress my apetite for a few days and I would lose another few lbs. When ephidrine became impossible to get hold of, I went to South Africa and got it there, then it stopped altogether and I did a lot of research into where it came from etc, managed to find a chinese herbalist who had a homeopathic version for asthmatics - of course I rushed round there and told her I had terrible asthma and managed to get some of that for a while. By that point I was convinced I had MODY and the insulin had turned me into a T1, so I started taking a chromium supplement, but it did nothing at all (except make my urine very expensive and chromium rich )

My first DKA was the week my brother died - I was in the middle of moving house, my home had been repossessed and my husband and I had lost all of our businesses and other properties, and on the night of my daughter's christening my brother jumped out of his 6th storey flat and died on impact. To be honest, my head was not really there, and between all of that and organising the funeral and move etc, I genuinely forgot to take my insulin.

I felt like cr*p, but wasn't really tuned in, and just forgot I was diabetic. I went for about 5-6 days before I was really ill and the next day, I went on a 300 mile round trip to pick up family from the ferry. I got sick in the car on the way home and literally pulled in and said I couldnt go any further. My aunt drove out and my uncle drove my car back for me. I got my sister to call nhs 24 and get me anti sickness pills, as I could not stop being sick. I refused to go to the hospital as my brother had been there. So out of hours saw me and said I should go in for the night, but I couldn't do it. Anyway, a few hours later I had to go to A&E and remember passing out in the waiting room. I was awake for a bit and transferred to another hospital, but had to check myself out for the funeral the next day, on the promise that I'd go straight back after the funeral. I had to sign a paper saynig that I accepted responsibilty for coming out of hospital aganist Dr's wishes. Though they were very understanding.

So in answer to your question I was not really conscious of being ill :/ but i do remember having really bad acid in my stomach, sickness, being hot all the time, really fast heartbeat. And yeah, the taste thing! eugh, not quite metallic, but something really not right, anything with butter tasted fine

Ive had 2 since, but through food poisoning and being stuck in the trap off being sick and not being able to eat or keep fluids down, so not wanting to inject. I had a terrible fear of hypos (my brother was also T1 and tried to kill himself by ODing on insulin several times under my care, and it done some damage to my trusting insulin and hypo awareness etc). On both occasions, I was ill before the DKA, so cant say at what point the symptoms got different, maybe when the heart rate and feeling like I was pumping syrup and not blood started?

This for me is the crux of the pump - I feel safe with a BG of 5-7, and admittedly it took me a few week s of results in the 20's then the teens ,but I'm confident that 3 jelly babies fixes a hypo, and that I wont die I used to come into DAFNE in morning and when my results had come down a few points, I kept saying "and I did not die!" only half joking tho

Wow, well done if you got this far, I never intended to but that turned into war and peace!

This has brought tears to my eyes!

You have described exactly what i feel when i go into DKA. And like you, i don't even realise i am ill. I think this makes the DKA worse, because if i am ill for a few days then i probably do forget to take my insulin.
One DKA episode was so bad, i even forgot who my bf was, who i was etc!

The acid reflux thing and the taste thing is the worst for me. I always crave lucozade because that's the strongest flavour i can think of to get rid of the taste.

I know what you mean about the hypos too. I have thought "forget this" a number of times and been tempted to not take my insulin, just for the fact that i feel like a smack head shaking while i'm out shopping. I hate the panic feeling..but i've come to realise it's not really worth the syrup blood, the heart palputations and the organ failure.

I've had DKA 8 times now i think. And every time they tell me 'You were lucky this time...maybe not next time'.

I'll be here if you ever wanna talk, my DKA buddy lol

 

[berryhead]

hi everyone im type one too just joined slimming world and im on a pump have been for 4 years so nice to meet others sometimes feel like im the only one hehhee look forward to chatting with u all xx

 

[*Claire-Bear*]

hi everyone im type one too just joined slimming world and im on a pump have been for 4 years so nice to meet others sometimes feel like im the only one hehhee look forward to chatting with u all xx

Hey Iv had my pump since January ... I feel like I'm the only one ... Xxx

 

[berryhead]

I have not had a good first week I have had several hypos need to adjust all my Basals and bolus settings aaarrgghhh I take it slimming world doesn't give u an allowance for lucozade and glucotabs

 

[pazza]

I've was diagnosed type 1 at the age of 10, I'm 43 now. Since diagnosis I was taught to Count carbohydrates and match to my bg levels and carb intake. However I did the DAFNE course a couple of years ago and i still learnt from it. I've successfully lost 3st 5 lbs since February following SW. I'm now a target member but I'm still wanting to lose another 7lbs on my own....If I fall hypo I have marks and spencer fruit gums!! They hit the spot at 5 carbs per sweet and 1 syn per sweet.... It's do able!! Good luck....

 

[Penguin_Hell]

I have not had a good first week I have had several hypos need to adjust all my Basals and bolus settings aaarrgghhh I take it slimming world doesn't give u an allowance for lucozade and glucotabs

They would be classed as syns.
The lowest lucozade i could find was:
Lucozade Sport Gel, Orange, 45g sachet - 6 syns

I presume this is the one you add water to? It's a lot less syns than a bottle of lucozade which is about 17 syns.

Maybe worth having chocolate? Like, curley wurleys are only 5 syns i think.
Can of coke is 7.5 syns.


I usually have a banana, activia snackpot (more sugar than muller lights), and 2 alpen light bars.
Then if i use my alpen light bars as healthy extras, i haven't even gone into my syns, but i've cured a hypo!

I have just grabbed a can of coke while being out and having a hypo..at least it's only half my syns gone then.

 

[pazza]

I've never fixed a hypo with glucotabs or lucizade...my choice is marks and spencer fruit gums, 5 carbs per sweet, 4 of them ( 20 fast acting carbs) hit the spot...4 syns in total. I would just work the syns out for whatever form of fast acting you have, nothing is banned on slimming world, all you have to do is tot up the syns in what you've had...10 syns allowed per day....room for 2.5 hypos if fixing with the fruit gums...I don't thankfully have many hypos though.

 

[Petrichor]

I think the secret to sorting out hypo when you are dieting is nor over treating! I now have 4jelly babies, and it works!! Admittedly, it took a few months to trust it, and not keep going. The faster the sugar, the quicker you feel better and dont want to eat as much.

Of course I'm preaching to the choir, and you all know this - you just have to trust it

 

[michmick]

Well I'm glad I started this thread, not looked for ages and have just spent time reading everyone's posts, really interesting.
My pump appointment is less than a month away now along with my preconception clinic first appointment, scary times ahead. Not sure I'll get funding for the pump as Croydon where I live is one of the the worst prescribing boroughs. Fingers crossed though.

 

[michmick]

Just to refresh this thread I am now a pumper! Got my pump a month ago and had time off SW to cope with the changes. Things have settled down now so returned to SW tonight. All going well!

 

[Penguin_Hell]

Just to refresh this thread I am now a pumper! Got my pump a month ago and had time off SW to cope with the changes. Things have settled down now so returned to SW tonight. All going well!

Congrats I'm happy it's all working out for you! X

 

[Petrichor]

hello peeps! just crawled back in to see You all! I've fallen off the wagon a bit over Christmas, and pretty much chucked the xenical altogether. I have the odd one after really fatty meals, as they don't give me any digestive problems, and I like to think they stop some of the fat hanging around! sitting at 16st and 6lbs just now, so still lighter than when I began losing. joined the gym too....

hope you are all doing well

 

[hayboo]

How you doing with pump and sw? Ive just started the plan