T1 Diagnosis & Treatment Experience (New & Old)

[River83]

Hi everyone,

I’m interested in hearing what happened once you were diagnosed and to see how things have changed over the years. I was diagnosed with T1 in 1984 at the age of 5 and am sure the process of stabilising and educating newly diagnosed T1’s has changed a lot since then.

Obviously it was my parents that received the advice and information and then I learned as I grew up. In a nutshell it went something like this:
- I lost a huge amount of weight over a short period of time, constant thirst and frequent visits to the toilet, all the typical signs. Visit to GP and ended up being admitted to hospital with BG of ~ 28mmol/L.
- Spent a week in hospital whilst BG was brought under control.
- Was given a fixed regime of ‘x’ carbs per meal and ‘y’ units of insulin per day. This was just a single dose of long acting insulin, I believe it may have been Monotard.

In terms of the education and information provide to my parents, it seems to have been extremely limited. Whilst I had regular check ups and HbA1c’s were monitored, there was no real flexibility encouraged. I wonder if this is still the case when newly diagnosed? I think that quite a fixed routine is probably still a sensible option at this stage until confidence is gained through experience?!

As a newly diagnosed T1 today, how much different is your experience? Are DAFNE courses offered straight away? Do you get an option of a pump when starting out? If like me you have had T1 for a while, did you get much information at the outset? How much of what you do now is self taught rather than from the DSN’s and Consultants?

Thanks!

 

[therower]

Hi @River83 . I think things have changed quite considerably. It's just so difficult to actually get in the T1 club these days
Diagnosed at 27 yrs back in '91. All the symptoms..........went doctors explained what was going on.
GP asked if I could do a urine sample? What a stupid question .
5 minutes later I was a T1, prescription next day, injecting ever since.
It appears that nowadays you have to have far more tests over a longer period of time. They really have upped the anti for getting a definitive diagnosis.
DAFNE isn't offered at diagnosis because of the instability of the honeymoon period.
I often think a Type 1 starter pack should be made available. Logistically it would be a nightmare.
The NHS would want to own it, consultants and specialists would want a majority of input, sponsorship would likely come from food industry , pharmaceuticals would steer medication to suit there shareholders and ultimately the single most important input would be largely overlooked. People like us would offer real advice from a real 24/7 perspective, sadly qualities often dismissed.

 

[kev-w]

1984 for me too, 17 years old, delayed diagnosis had me at around 35mmols, my first injection was at the hospital and in front of an office full of medical students.
I think my starter pack was two bottles of insulin, a months supply of 5 syringes and a couple of photocopied sheets, one with pictures of what not to eat and the other had pictures of food I should eat, with portion sizes.
The only info I took away was I had to drink Diet Pils, which I did the same night and woke up in A&E on a drip the next day.
Oh and there was no such thing as a honeymoon period back then, all the hypos I had were my fault I was told...

33 years later and I've never been offered a course as we don't do DAFNE where I live.

 

[River83]

Hi @River83 . I think things have changed quite considerably. It's just so difficult to actually get in the T1 club these days
Diagnosed at 27 yrs back in '91. All the symptoms..........went doctors explained what was going on.
GP asked if I could do a urine sample? What a stupid question .
5 minutes later I was a T1, prescription next day, injecting ever since.
It appears that nowadays you have to have far more tests over a longer period of time. They really have upped the anti for getting a definitive diagnosis.
DAFNE isn't offered at diagnosis because of the instability of the honeymoon period.
I often think a Type 1 starter pack should be made available. Logistically it would be a nightmare.
The NHS would want to own it, consultants and specialists would want a majority of input, sponsorship would likely come from food industry , pharmaceuticals would steer medication to suit there shareholders and ultimately the single most important input would be largely overlooked. People like us would offer real advice from a real 24/7 perspective, sadly qualities often dismissed.

I agree that a T1 starter pack should be available if it’s not already, but as you say its management would be a nightmare. At the very least people should be made aware of resources like this site and given access to all options available in terms of managing the condition.

 

[River83]

1984 for me too, 17 years old, delayed diagnosis had me at around 35mmols, my first injection was at the hospital and in front of an office full of medical students.
I think my starter pack was two bottles of insulin, a months supply of 5 syringes and a couple of photocopied sheets, one with pictures of what not to eat and the other had pictures of food I should eat, with portion sizes.
The only info I took away was I had to drink Diet Pils, which I did the same night and woke up in A&E on a drip the next day.
Oh and there was no such thing as a honeymoon period back then, all the hypos I had were my fault I was told...

33 years later and I've never been offered a course as we don't do DAFNE where I live.

It seems to be that DAFNE rules are different in a lot of areas. Where I live it is mandatory before they will allow you to have a pump, or at least it was around 6 years ago when I did mine.

 

[Deleted Account]

It would be interesting to know what happens now.
I was diagnosed 14 years ago.
I went to the doc because I was weeing a lot. I was told I had a UTI and sent away with a prescription for antibiotics.
Two weeks later and no change, I returned. A urine test strengthened the doc's idea that I "probably" had diabetes. No mention of which type at that stage.
Next day went to the hospital for blood test and confirmed diagnosis. Was given Insulutard (sp?) to be taken on a fixed dose twice a day and told not to change my behaviour or diet ... which meant eating what I what when I want. Was shown how to inject and how to measure my BG. Sent home same day and had follow up calls with nurse daily for the next 2 weeks as she tweaked my insulin dose.
Six months later I was put on basal-bolus (NovoRapid and Lantus).
Twelve years later I went on a DAFNE type course.
Two months after that I went on a pump.

 

[River83]

It would be interesting to know what happens now.
I was diagnosed 14 years ago.
I went to the doc because I was weeing a lot. I was told I had a UTI and sent away with a prescription for antibiotics.
Two weeks later and no change, I returned. A urine test strengthened the doc's idea that I "probably" had diabetes. No mention of which type at that stage.
Next day went to the hospital for blood test and confirmed diagnosis. Was given Insulutard (sp?) to be taken on a fixed dose twice a day and told not to change my behaviour or diet ... which meant eating what I what when I want. Was shown how to inject and how to measure my BG. Sent home same day and had follow up calls with nurse daily for the next 2 weeks as she tweaked my insulin dose.
Six months later I was put on basal-bolus (NovoRapid and Lantus).
Twelve years later I went on a DAFNE type course.
Two months after that I went on a pump.

It’s interesting that you were told not to alter your diet at all during that first few months. I would have thought you’d need to be tracking food in order for them to recommend a basel level and bolus ratio. I was also on NovoRapid & Lantus pre pump but never had anywhere near as good control as I do now.

 

[EllieM]

I was diagnosed aged 8 in 1970. I must be one of the few T1s to have been diagnosed early. As my mother was a typical diagnosed very late T1 she was quick to notice extra thirst (she always described it later as asking for water at night) and I was diagnosed after one blood test. They sent me to hospital to be "balanced" and allowed my mother to go to the same hospital to be "rebalanced". Though she wasn't in the same ward as me she was just round the corner and I'm very grateful to whoever arranged that bit of kindness. I was lucky in that my parents paid to use disposable syringes rather than the NHS ones and I was put onto a fixed insulin/carbohydrate dose, I think just one injection but it might have been two. This was pre glucometer, so I had to urine test twice a day.
I quickly learnt to carb count: and memorised a little blue booklet of "carbohydrate values of proprietary foods". I still remember "Rose's diabetic orange", the only low carb cordial available, and very occasional sharing of a can of coca cola with my older (non T1) brother. Half a can (one child poured, the other chose the glass) was 20g of carb, so it really was a big deal.

 

[therower]

@kev-w . Diet Pils at 17 yrs old???????? You rugby players , nothing but pi****ads.
Lock and flanker for me, school and a few years after.
Lowenbrau or Loony brew was my go to " it'll be okay for a diabetic " tipple many years ago. Was quite often proved wrong on that one

 

[SueJB]

Hi @River83 . I think things have changed quite considerably. It's just so difficult to actually get in the T1 club these days
Diagnosed at 27 yrs back in '91. All the symptoms..........went doctors explained what was going on.
GP asked if I could do a urine sample? What a stupid question .
5 minutes later I was a T1, prescription next day, injecting ever since.
It appears that nowadays you have to have far more tests over a longer period of time. They really have upped the anti for getting a definitive diagnosis.
DAFNE isn't offered at diagnosis because of the instability of the honeymoon period.
I often think a Type 1 starter pack should be made available. Logistically it would be a nightmare.
The NHS would want to own it, consultants and specialists would want a majority of input, sponsorship would likely come from food industry , pharmaceuticals would steer medication to suit there shareholders and ultimately the single most important input would be largely overlooked. People like us would offer real advice from a real 24/7 perspective, sadly qualities often dismissed.

So completely agree. Without the wise words and info on here I'd have been doomed. I really would have welcomed a starter pack written by someone with T1 that was honest and kind and informative.

 

[SueJB]

1984 for me too, 17 years old, delayed diagnosis had me at around 35mmols, my first injection was at the hospital and in front of an office full of medical students.
I think my starter pack was two bottles of insulin, a months supply of 5 syringes and a couple of photocopied sheets, one with pictures of what not to eat and the other had pictures of food I should eat, with portion sizes.
The only info I took away was I had to drink Diet Pils, which I did the same night and woke up in A&E on a drip the next day.
Oh and there was no such thing as a honeymoon period back then, all the hypos I had were my fault I was told...

33 years later and I've never been offered a course as we don't do DAFNE where I live.

I'm staggered @kev-w at how poor the "treatment" was. Brilliant you for making it on your own.

 

[Scott-C]

I'm a relative newbie with this at only 30 yrs in, dx'd in 1988, but the thread is bringing back some memories.

It's so long ago, I'm vague now about my initial treatment but I'm pretty sure it was a mixtard type thing.

I recall being given papers which set out "exchanges" : I was allowed a certain number of carbs which could be "exchanged" for others on the list, depending on what I fancied eating that day.

Don't know if it was a local thing or not, but there seemed to be a big emphasis on relating everything to the carb content of Digestive biscuits.

I had a doc and dsn who bred confidence. They both told me, here's the basic rules, but go off and experiment with them - this is yours now.

I've no idea how it is for newly dx'd these days. T1 has been called the "ultimate self-treated condition". I think there's only so much we can expect from docs. There always comes a point where we need to say to ourselves, this is mine, I'm making the decisions.

Of course, it would flippin well help if they would tell us right at the start that 1u tends to drop by about 2 to 3, and 10g tends to raise by 2 to 3, adjust as accords for yr own individuality, instead of waiting a year for a dafne course!

 

[SueJB]

It would be interesting to know what happens now.
I was diagnosed 14 years ago.
I went to the doc because I was weeing a lot. I was told I had a UTI and sent away with a prescription for antibiotics.
Two weeks later and no change, I returned. A urine test strengthened the doc's idea that I "probably" had diabetes. No mention of which type at that stage.
Next day went to the hospital for blood test and confirmed diagnosis. Was given Insulutard (sp?) to be taken on a fixed dose twice a day and told not to change my behaviour or diet ... which meant eating what I what when I want. Was shown how to inject and how to measure my BG. Sent home same day and had follow up calls with nurse daily for the next 2 weeks as she tweaked my insulin dose.
Six months later I was put on basal-bolus (NovoRapid and Lantus).
Twelve years later I went on a DAFNE type course.
Two months after that I went on a pump.

I'm really shocked about what happened to you and feel I should not even think about moaning. Well done you though @helensaramay for being amazing and also for helping me and many others.

 

[Circuspony]

I was diagnosed LADA T1 last year. There's a lot more focus on upfront education now (a US study showed upfront investment reduced problems down the line).

I had weekly appointments with one of DN, nutritionist or consultant in first 8 weeks. I was asked to phone in daily for first fortnight and keep a food diary while they helped me sort my doses.

Saying that other newly diagnosed T1s on here have been sent away with insulin and **** all support so I think where you live really makes a difference.

 

[SueJB]

I'm a relative newbie with this at only 30 yrs in, dx'd in 1988, but the thread is bringing back some memories.

It's so long ago, I'm vague now about my initial treatment but I'm pretty sure it was a mixtard type thing.

I recall being given papers which set out "exchanges" : I was allowed a certain number of carbs which could be "exchanged" for others on the list, depending on what I fancied eating that day.

Don't know if it was a local thing or not, but there seemed to be a big emphasis on relating everything to the carb content of Digestive biscuits.

I had a doc and dsn who bred confidence. They both told me, here's the basic rules, but go off and experiment with them - this is yours now.

I've no idea how it is for newly dx'd these days. T1 has been called the "ultimate self-treated condition". I think there's only so much we can expect from docs. There always comes a point where we need to say to ourselves, this is mine, I'm making the decisions.

Of course, it would flippin well help if they would tell us right at the start that 1u tends to drop by about 2 to 3, and 10g tends to raise by 2 to 3, adjust as accords for yr own individuality, instead of waiting a year for a dafne course!

8months in and I was never told this. Everyone knows it's a shock to take in the diagnosis as an adult so it needs to be written down and given out immediately not just told. I've heard too that too about "ultimate self-treated condition" and in some cases it gives DSNs a cop out. "We like you to take ownership of your diabetes" I was told. That's fine but you can't own something or make informed decisions if you don't understand the rules or the parameters of play. I still feel ignorant. Thank goodness for everyone being here.

 

[lizdeluz]

I was diagnosed in 1985, aged 30. My daughter was a toddler, and I was doing some part-time teaching. I guessed what was wrong with me when I found I couldn't last through a 50 minute lesson without being desperate for water. I was exhausted too and losing weight by the day. I went to the school library and looked up diabetes in a medical encyclopaedia and read about my symptoms, and took myself to the GP at the end of the school day. She did a blood test and arranged an appointment at the local hospital for the next morning. I went there on the bus and spent the whole day there seeing consultants and nurses. I was so tired that I welcomed the chance to just be quiet and inactive for a change. The first insulin injection was very welcome, it was something that would deal with feeling rubbish. I think I was given Actrapid and Insulatard, but I'm not sure I'm remembering right. I then had two weeks off work and received home visits from nurses who taught me how to handle my diabetes in the light of what was known in 1985!

 

[EllsKBells]

Definitely agree with @Circuspony about where you live making a difference - I had to find out what doses I was meant to be taking from my discharge notes. Almost everything I know about diabetes I learnt here. I did eventually do a course of sorts, when they needed someone to replace a drop out, but it was a big waste of time - they served pizza for lunch, if that gives you any idea. I was on fixed doses for about three years, but eventually figured out myself that I would need to change it for different meals etc. I saw a DSN occasionally, who, when asked anything, would say "that's a very good question", and then change the subject.

This was in 2012.

I definitely agree about a 'starter pack' from real T1s - all I got was the JRDF leaflet with the manufactured quotes about how it didn't need to stop you doing anything.

 

[Scott-C]

8months in and I was never told this. Everyone knows it's a shock to take in the diagnosis as an adult so it needs to be written down and given out immediately not just told. I've heard too that too about "ultimate self-treated condition" and in some cases it gives DSNs a cope out. "We like you to take ownership of your diabetes" I was told. That's fine but you can't own something or make informed decisions if you don't understand the rules or the parameters of play. I still feel ignorant. Thank goodness for everyone being here.

Yeah, Sue, that 1u, 10g thing is one of the basics and it is surprising that educators don't put it up front and centre as a basic starting point. It's not always true, of course, it's a general rule which needs tweaking but it's an ok starting point.

The other basic rule which is worth considering is to do with hypos: it's always way too easy to over-eat in the panic of a hypo, leads to a hyper, then a shot to bring it back down, rinse and repeat. With some practice, though, 10g is usually enough, although it obviously depends a lot on how much active insulin is still on board. If there was one thing I could tell newly dx'd to make their lives easier it would be to resist the temptation to over-treat a hypo and just see how that initial 10g pans out after 10 mins, then take another 10g if it it's not looking good at that point. Takes patience, but it's worth the effort to avoid crazy hypo-fix hypers.

And pre-bolusing. HCPs are insanely cautious about having us inject 20 mins before a meal, even though we know that it gives insulin a chance to meet carbs head on instead of playing catch up.

 

[Deleted Account]

I'm really shocked about what happened to you and feel I should not even think about moaning. Well done you though @helensaramay for being amazing and also for helping me and many others.

I think I was lucky. Once the diagnosis was confirmed, I met a fantastic nurse who I still see. She has a wonderful attitude which has motivated me ever since: in my first meeting she told me “diabetes should not stop you doing what you want.” That included the Moonwalk, a 26 night time walk for breast cancer, 3 months after my first diagnosis.
Ok, no training but I was motivated to find ways to do “whatever I want” and learnt through trial and error.

 

[kev-w]

@kev-w . Diet Pils at 17 yrs old???????? You rugby players , nothing but pi****ads.
Lock and flanker for me, school and a few years after.
Lowenbrau or Loony brew was my go to " it'll be okay for a diabetic " tipple many years ago. Was quite often proved wrong on that one

I'm up north so it was RL for me , centre 3/4 or second row from school till I was 32, I started playing union a couple of years into my 20s, a workmate played for one of the local chocolate factory works teams and I had a go at full back as they were short, the only advice given was don't hold the ball in the tackle but enjoyed it so played for around 7 years.

Blood tests were BM sticks back then, diagnosed in the October my boxing club banned me until my Dr would sign a form that he never signed, and the rugby club said I should come back for training after the summer once stable, as an apprentice fitter/machinist(making sewerage plant & machinery which isn't a sh*t job) I was banned from using high speed machinery for 12 months, 6 months on a push bike for 07.30 starts till I got my licence back, diabetes clinic with the majority of the queue in wheelchairs having had amputations (probably not that bad but it's how I remember it, or remembered it reading a Nokindofsuzie post the other month cringing)
I know my first insulins were pork, one to mix and one clear but don't remember their names...
The BDA were the 'go to' for wrong diabetes advice.