Newly Diagnosed Type 1

[Deleted member 391597]

Hi everyone.
I was just looking for some tips, advice and reassurance really. I'm 28 and have a normal bmi. I had gestational diabetes diagnosed in the third trimester last year and managed to keep my blood sugar under really good control using small amounts of insulin. I stopped all injections after my daughter was born and have had no signs or symptoms of diabetes during the 6 months since she has been born.
The week before last I ended up being unwell with the Norovirus and was very sick. 36 hours later I was still throwing up and started getting breathless. I tested my ketones on a monitor I was given when I was pregnant and they were very high along with my blood sugars. I ended up in hospital for 3 days with DKA.
I'm yet to see a consultant so under the diabetic nurses care at the moment. This has all been a huge shock! My numbers now are much worse than when I was pregnant and my understanding was that they are supposed to be worse when you are pregnant! I just don't understand it. I've been put on 6 units of Lantus once a day and 4 units of NovoRapid 3 times a day with each meal.
I was just wondering what other people's blood sugars varied from really and how much insulin people are taking. I can't imagine ever being able to have a treat or a night out with alcohol ever again at the moment! I'm too nervous to even eat a tiny bit of chocolate.
I'm looking for positive lifestyle experiences and hopefully people I can turn to for a bit of advice if I need it. It's all come as a huge shock especially as when I was pregnant my consultant told me I would never get Type 1 because of my age?! Finding it difficult to get my head around - especially with a 6 month old.
Thanks in advance.

 

[himtoo]

Hi @Hollieo4
welcome to the forum !!
my very first bit of advice would be to try ( hard I know ) to take things really slowly.
at first it is so much to take in and the worry starts as well..............
and you can only learn and adjust in real time.

over the next few months you will get to see a consultant , hopefully you will be sent on a carbohydrate counting course ( which will then allow you to adjust your insulin to what you eat )
do ask your diabetic nurse about the carb course ( they usually want you to wait 6-12 months before putting you on one.)

edit to add -- don't worry -- treats and alcohol will make their way back into your diet over time ( no need to rush though )

hopefully you will also make some good friends on here as well -- it really is a good place to get support from like minded people.

all the best !!

 

[urbanracer]

Hi @Hollieo4 ,

It takes some adjustment but when you get used to the idea you'll realise that although it's a pain in the *&^% you don't have to let it take over your life. In terms of the positive lifestyle experiences, did you know that Theresa May is a T1 and so is Sir Steven Redgrave, so there's still time for you to be the Prime Minister or an Olympic rower if it takes your fancy.

I was diagnosed at the age of 54, it hasn't stopped me from doing anything yet ( and nor will it ) !

Have a read around these forums and also the front pages of the website where you'll find lot's of great information. Don't be afraid to ask questions here - most of us are quite helpful.

 

[azure]

@Hollieo4 Unfortunately Type 1 can occur at any age. I'd guess you were heading for it before you became pregnant and that your GD diagnosis was incorrect. Just my non-medical opinion. That's happened to a lot of women here and elsewhere. Type 1 doesn't develop until you've lost 80% of your insulin production ability.

You'll still be able to have treats No food is forbidden - you just have to take a bit more care and thought about how/when you eat it.

What you're feeling is completely normal - upset, confusion, even anger. They're all normal emotions after a Type 1 diagnosis.

I recommend you get the book Think Like A Pancreas. It's fantastic for Type 1s

I also recommend you test lots and push to have carb counting explained to you asap.

You'll be ok, I promise

 

[Juicyj]

Hey @Hollieo4 Your story sounds quite similar to mine..

I was diagnosed with gestational diabetes at 23 weeks and was put straight onto insulin, it was a bit of a shock but I adjusted knowing it would go once i'd given birth and yes it did, however mine took about 3 years to materialise again as type 1, I went on a skiing holiday and during the week became very ill, almost to the point of embarrassing as I was constantly drinking, peeing, losing weight and lethargic, I came back to the UK and went to the docs straight away and was diagnosed and went into hospital. I used to wonder why and how and I never really understood why it happened, i'd been very healthy all my life. As soon as I came to terms and started educating myself I learned how to cope better, it's really about confidence and knowing what you can do and what the effects of it will be like, this does come in time, now. It does get alot better but talking to others, learning and listening to your body will help. There's many here who know and understand exactly what you are going through, so lean on us for support

 

[Deleted member 391597]

Thank you so much for all of your replies! Think it's just going to take a lot of getting used to. Getting anxious waiting for an appointment from my consultant. I had such perfect numbers while I was pregnant so it bothers me a lot to see numbers above 7 now. Have any of you got a target for 2 hours post meals? I'm seeing a lot of 8s and 9s so goodness knows what they are after 1 hour! My diabetic nurse is reluctant to up my insulin because she doesn't want me at risk of hypos with the baby...but surely these numbers can't be good if a "normal person" never rises above 7?

 

[db89]

Hi @Hollieo4

Welcome to the forum!

It is a lot to get your head around at first and I would second the recommendation to get Think Like a Pancreas if you can, it is really helpful explaining many aspects.

Being newly diagnosed I would think you'll be in contact fairly often with your DSN to make adjustments and figure out what you need initially. It was a few weeks for me before I started being able to adjust my fast acting for what I was eating. I found it helpful to have similar meals at first to try and spot patterns which when discussed was then used to adjust doses (e.g. levels higher than I'd like a few days in a row 2 hours after similar breakfasts).

NICE set targets a couple of years ago for testing levels with diabetes which were:

Adults with Type 1 diabetes (NICE 2015)

• on waking: 5–7mmol/l
• before meals at other times of the day: 4–7mmol/l
• 90 minutes after meals: 5–9mmol/l.

There are things you can do with time which I have learned from this forum such as adjusting the timing of a bolus dose before meals. Try to make one change at a time if you can to see what works and what doesn't and soon you should get a clearer picture of your own diabetes and how it behaves.

 

[azure]

'Normal' people can spike as high as 10 after a big meal, and up to approx 8 after a regular meal @Hollieo4

Your DSN is being very sensible in trying to avoid hypos with a young baby. I've had Type 1 more than 20 years and I still make sure that I'm higher than normal when I have a baby as I do now.

The pregnancy targets are extra strict because very tight control is important during pregnancy. Bear in mind also that you were nearer the beginning of the Type 1 slope into full blown Type 1 when you were pregnant so that would have helped your control too.

Slowly and steadily is sensible, especially when you have a baby

 

[NatalieK]

Hi Hollie,

We have very similar stories, im also 28 and was diagnosed with gestational diabetes last year at 18 weeks. I came off the insulin when I had my daughter but had very high numbers and to cut a long story short I've ended up with a type 1 diagnosis.

I'm back on insulin and still struggling to get things under control, my daughter is now 9 months.

Would be good to link up more and chat, I've been feeling quite lonely in my situation!

 

[Deleted member 391597]

Thank you all again for your very kind advice - I'm sorry if I seem a bit negative about it all, it's just all come as such a shock.

@NatalieK - I'm sorry to hear that this has happened to you too! I can't believe we are the same age witu such similiar stories. How long did it take for them to adjust your insulin doses? I'm finding it a struggle every day to get good numbers at the moment. I seem to creep up between meals without even eating which I find very frustrating!

 

[TheBigNewt]

Curious as to why, understanding you were hospitalized for 3 days in DKA (which is very serious), you have yet to see an endocrinologist. That seems quite odd to me. That's sorta like being hospitalized for a heart attack and not seeing a cardiologist. Right?

 

[azure]

Curious as to why, understanding you were hospitalized for 3 days in DKA (which is very serious), you have yet to see an endocrinologist. That seems quite odd to me.

I'm sure the OP received appropriate care in hospital from a multi-disciplinary team.

 

[TheBigNewt]

I'm sure the OP received appropriate care in hospital from a multi-disciplinary team.

I assume so. But was she assigned to a specialist for care afterwards, or taken care of by hospitalists (as we do here) and the after hospital care was left to someone entirely new?

 

[azure]

I assume so. But was she assigned to a specialist for care afterwards, or taken care of by hospitalists (as we do here) and the after hospital care was left to someone entirely new?

Consultants are based at hospitals. When I was diagnosed and admitted to hospital, I saw a consultant and then saw the same consultant again later as an outpatient.

 

[TheBigNewt]

Consultants are based at hospitals. When I was diagnosed and admitted to hospital, I saw a consultant and then saw the same consultant again later as an outpatient.

That's what I would think., but she said "I've yet to see a consultant so under the care of a diabetic nurse for the moment."

 

[himtoo]

Thank you all again for your very kind advice - I'm sorry if I seem a bit negative about it all, it's just all come as such a shock.

@NatalieK - I'm sorry to hear that this has happened to you too! I can't believe we are the same age witu such similiar stories. How long did it take for them to adjust your insulin doses? I'm finding it a struggle every day to get good numbers at the moment. I seem to creep up between meals without even eating which I find very frustrating!

Hi @Hollieo4
it is a huge shock to any of us when we get this diagnosis -- you must try to not worry about sounding a bit negative -- it is completely normal.
all of us replying to you will feel a great empathy for you ( as we have walked in your shoes )
just big hugs from me young lady !! [[[hugs]]]

 

[noblehead]

Welcome to the forum @Hollieo4

I can't imagine ever being able to have a treat or a night out with alcohol ever again at the moment!

I can assure you that the time will come where you'll be confident in doing both.

Being diagnosed with type 1 is a huge shock, in the first weeks & months there's so much information to take in and it can be overwhelming, but in time it will all make sense and believe me life will return to normal again. Best wishes and take care.

 

[urbanracer]

I assume so. But was she assigned to a specialist for care afterwards, or taken care of by hospitalists (as we do here) and the after hospital care was left to someone entirely new?

That's what I would think., but she said "I've yet to see a consultant so under the care of a diabetic nurse for the moment."

The UK has numerous 'health trusts' governing different areas of the country and whilst there is a governing framework for them to operate under, there are often subtle differences in the way they go about their business. It might also depend on how you were 'introduced' to the hospital - for example, did you walk in or were you carried in on a stretcher.
I presented to my local doc with blood glucose levels above 30 one morning, I was sent to the hospital's Endocrinology centre the next day for my first insulin injection and was sent home in the afternoon with 2 pens and an information pack. I'd had a nice chat with a diabetes nurse but I didn't actually see the counsultatant until 3 months later!

 

[urbanracer]

Thank you so much for all of your replies! Think it's just going to take a lot of getting used to. Getting anxious waiting for an appointment from my consultant. I had such perfect numbers while I was pregnant so it bothers me a lot to see numbers above 7 now. Have any of you got a target for 2 hours post meals? I'm seeing a lot of 8s and 9s so goodness knows what they are after 1 hour! My diabetic nurse is reluctant to up my insulin because she doesn't want me at risk of hypos with the baby...but surely these numbers can't be good if a "normal person" never rises above 7?

Have a look at this page. The blood glucose levels are idealised but it indicates that 8's and 9's aren't massively bad even though you probably want them lower.
http://www.diabetes.co.uk/diabetes_care/blood-sugar-level-ranges.html

 

[TheBigNewt]

. I can't imagine ever being able to have a treat or a night out with alcohol ever again at the moment! I'm too nervous to even eat a tiny bit of chocolate.
I'm looking for positive lifestyle experiences and hopefully people I can turn to for a bit of advice if I need it. It's all come as a huge shock especially as when I was pregnant my consultant told me I would never get Type 1 because of my age?!
.

Whomever told you you would never get Type 1 because you are 28 didn't know much about diabetes. I was 32. And I have dark chocolate and red wine rather often, and my BS doesn't suffer from it either. And neither will yours. The thing I miss the most is ice cream though. I used to like that stuff a LOT!