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vicky1974

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Hi I’m new here and looking for some advice please.

Recent diagnosis of type 1 - cause autoimmune and went into DKA

Home for a week and sugars always high. Haven’t had a reading under 13 yet and normally around 19 mid morning.

Eating healthily and exercising.

Diabetic nurses have put insulin up 2 units in the morning (lantus) now 18 units and novorapid 8 three times a day. Reviewing this weekly.

I’m really concerned that my sugars are to high, any advice please?
 
Hi @vicky1974 - sorry to hear about your diagnosis but you are amongst friends here - Welcome to the forum - I'm relatively new to diagnosis (2 1/2 years in) as well, and it can be frustrating and worrying to start with - I can assure you that it will get easier though

In assuming your're using a CGM (Libre or Dexcom) to track your blood glucose? If so it is a brilliant way to see how you body reacts to different things (food, exercise etc. etc.)

They key for many on insulin therapy is getting the long-lasting (basal) insulin dosage right (in your case, Lantus) - if this is right, then it will be gradually releasing insulin (in a way) to keep the base level down when you are at rest/not eating anything etc. It sounds as if you've had sound advice to increase this gradually from your DSNs. Readings of 13+ all day are quite high, so any changes to your basal insulin should hopefully help this - they may consider splitting your doses (morning and evening) and/or a change of insulin to a different type but the fact that they are monitoring it on a weekly basis is fantastic

With regards to your mealtime insulin (in your case, Novorapid), are you taking fixed doses for each meal? And is it working in terms of slowing down the spikes after eating? (You will never eliminate them completely, but the curve can be softened with the right dosage) - Have you noticed any bigger spikes with certain foods? The carbohydrate content in food will have an impact on this, which is why we count carbs before injecting (to try and best work out how much to take)

Sorry for all the questions! Just trying to get a better handle on your situation so I can try and help - there are many many people on this forum who genuinely want to help - A T1 diagnosis is a tough thing to deal with, but you are not alone, and try not to worry - it does get easier!
 
Hi 🙂 thank you so much for your reply. I have a Libre sensor and they really are amazing. My sugars are about 15 when I get up? I have 18 units of lantus and then 8 units of novoparid 3 times a day with meals. Sugar spikes about 19 each morning then levels out more over the day…between 13-16. I’m just concerned it’s so high. I’m also feeling very tired and thirsty all the time. Ketones are around 0.5. Diabetic nurses have been great but if I only keep putting the lantus up 2 units a week then I feel they’ll never get under control. It’s such a minefield, I’m finding it all a bit overwhelming. Thanks again for your help
 
No problem - that's what we're here for - It can be very overwhelming to start with as I'm sure others will agree too - 15 in the morning is high and I'm glad you're testing for Ketones especially since you've had DKA - if they go over 0.5 that would be a concern - insulin is a powerful drug which is why they are only increasing it by 2 units at a time for your basal insulin (this is a sensible, and the right thing to do) - It does sound to me that they are trying to get your basal dosage right and unfortunately, this may take some time as these adjustments do need to be taken slowly - It also sounds as if your bolus (mealtime - Novorapid) insulin does seem to be working, if you're not going over 19 after meals (from a base of 13), and you're not having hypos - it is a case of getting your long-acting insulin right to lower the base level in a safe way - You say that the spikes are worse in the morning which is certainly not uncommon - many people (including myself) take more fast-acting insulin with food for breakfast, than we do for dinner for example (but everyone is different, I must stress!) - Personally once I was moved on to split dose basal insulin (once in the morning and once at night) rather than once in the morning, it helped with me not waking up high, but this is a decision for your healthcare team - I really hope you get it all sorted, and don't be a stranger - feel free to ask ANY questions you may have (Nothing is considered "Silly" on here) - and it does get easier, I promise
 
Thank you. I think I’m probably being impatient! It’s just all so new. Could I ask which long lasting insulin you have please?
 
It does take time to get it right I'm afraid - you can see what insulin I'm taking underneath my posts - it's on my signature 1731944613083.png
 
Hi,
Sorry to hear about your diagnosis. It sounds like you are managing amazingly well. I was diagnosed with T1D last year.

It can take a bit of time to get your blood sugars under control. I’m glad that you are being well supported by your DSN’s, I called mine all the time in the first few weeks for advice!
Eventually you will be offered a carb counting course; this is what really helped me to manage my diabetes. I did this about 8months after diagnosis, I was very keen to do it earlier, but I’m glad I didn’t as I needed time to get my head around the diagnosis.

The diabetes uk website is a great source of info.

Take care,
Liz
 
Lily.D said:
Hi,
Sorry to hear about your diagnosis. It sounds like you are managing amazingly well. I was diagnosed with T1D last year.

It can take a bit of time to get your blood sugars under control. I’m glad that you are being well supported by your DSN’s, I called mine all the time in the first few weeks for advice!
Eventually you will be offered a carb counting course; this is what really helped me to manage my diabetes. I did this about 8months after diagnosis, I was very keen to do it earlier, but I’m glad I didn’t as I needed time to get my head around the diagnosis.

The diabetes uk website is a great source of info.

Take care,
Liz
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Hi Liz

Thanks for your reply.

I’m really trying to get my head round it but it’s so difficult. I keep reading about high sugars and the damage it can do so want everything sorted out.

I know I’m being impatient but I feel so awful! Everyone’s been great though. I can’t wait to do the course? I didn’t know about it.
 
vicky1974 said:
Hi Liz

Thanks for your reply.

I’m really trying to get my head round it but it’s so difficult. I keep reading about high sugars and the damage it can do so want everything sorted out.

I know I’m being impatient but I feel so awful! Everyone’s been great though. I can’t wait to do the course? I didn’t know about it.
Click to expand...
Hi vicky I was diagnosed type 1 in April, it does take time to come down my bg was 30 and keystone 3.25. I was very tired and extremely thirsty plus eyesight was awful. You just have to have patience and you will get there
 
Woodywoodpecker said:
Hi vicky I was diagnosed type 1 in April, it does take time to come down my bg was 30 and keystone 3.25. I was very tired and extremely thirsty plus eyesight was awful. You just have to have patience and you will get there
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Thank you, I’m glad you’re getting there. Yes I do need to be patient. I keep thinking it must have been an awful lot higher before I found out. I’m struggling with my eyesight too, tired and thirsty. It’s really hard to stay positive but trying my best.
 
vicky1974 said:
Hi Liz

Thanks for your reply.

I’m really trying to get my head round it but it’s so difficult. I keep reading about high sugars and the damage it can do so want everything sorted out.

I know I’m being impatient but I feel so awful! Everyone’s been great though. I can’t wait to do the course? I didn’t know about it.
Click to expand...
The course you need to do is called DAFNE (Dosage Adjustment for Normal Eating) and it is brilliant (at least it was for me) - It empowers you to change your dosage yourself (on both basal and bolus (before food) Insulin without fear, based on trends in your glucose trends over a period of time) - hopefully you will get on this course soon - and as @Woodywoodpecker says, it does take time, and @Lily.D is spot on, this website & forum is an amazing source of info - we all really wish you all the best and are with you on your journey
 
vicky1974 said:
Thank you, I’m glad you’re getting there. Yes I do need to be patient. I keep thinking it must have been an awful lot higher before I found out. I’m struggling with my eyesight too, tired and thirsty. It’s really hard to stay positive but trying my best.
Click to expand...
I was actually diagnosed for 7 months with type 2, lost 3 stone in a few months doctors kept saying eat more. Then hb number came in at 123 was sent home over weekend with medication, and if I felt pain or sick to 999. Had appointment for the Monday at hospital, went every Monday for 6 weeks to learn how to cope with it all. Took about 4 months for my eyesight to go back to what it was before, thirst has gone and energy levels getting better. I’m not 100% with it all but getting there, as I am sure you will too. This forum is brilliant, actually better than doctors for advice and tips
 
vicky1974 said:
I’m struggling with my eyesight too, tired and thirsty.
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Those things should resolve as they get your levels down to something closer to normal.

I'm sure if you mention those and that you think your levels are taking a while to come down they'll explain what they're trying to and why. There are obvious risks in going too low, but there are also less obvious risks in sugar levels falling too quickly (it can apparently cause retinopathy, I think). That's something that's being carefully considered while putting people on hybrid closed-loops (who're typically a bit better controlled than you are now).
 
mashedupmatt said:
The course you need to do is called DAFNE (Dosage Adjustment for Normal Eating) and it is brilliant (at least it was for me) - It empowers you to change your dosage yourself (on both basal and bolus (before food) Insulin without fear, based on trends in your glucose trends over a period of time) - hopefully you will get on this course soon - and as @Woodywoodpecker says, it does take time, and @Lily.D is spot on, this website & forum is an amazing source of info - we all really wish you all the best and are with you on your journey
Click to expand...
That sounds really helpful. I will ask about this. I think given time that’s what I’ll need to do. I agree this forum is brilliant, so glad I found you all
 
Woodywoodpecker said:
I was actually diagnosed for 7 months with type 2, lost 3 stone in a few months doctors kept saying eat more. Then hb number came in at 123 was sent home over weekend with medication, and if I felt pain or sick to 999. Had appointment for the Monday at hospital, went every Monday for 6 weeks to learn how to cope with it all. Took about 4 months for my eyesight to go back to what it was before, thirst has gone and energy levels getting better. I’m not 100% with it all but getting there, as I am sure you will too. This forum is brilliant, actually better than doctors for advice and tips
Click to expand...
I’m glad you’re getting there, I agree better advice than I’ve had from my gp. It’s so reassuring to know there’s some lovely people out there. Thanks for the reply
 
Bruce Stephens said:
Those things should resolve as they get your levels down to something closer to normal.

I'm sure if you mention those and that you think your levels are taking a while to come down they'll explain what they're trying to and why. There are obvious risks in going too low, but there are also less obvious risks in sugar levels falling too quickly (it can apparently cause retinopathy, I think). That's something that's being carefully considered while putting people on hybrid closed-loops (who're typically a bit better controlled than you are now).
Click to expand...
Fingers crossed, I am worried about my eyesight. I’ve been reading lots of things on here and found some great info. Thanks for the reply
 
vicky1974 said:
Fingers crossed, I am worried about my eyesight. I’ve been reading lots of things on here and found some great info. Thanks for the reply
Click to expand...
Issues with eyes can be very concerning but if it is that your vision is out of focus is should settle down once your blood glucose comes down. People often only notice a problem when levels become very high as high blood glucose causes the shape of the eye to change altering the focal length but it occurs slowly so your brain adapts but then as blood glucose falls because of dietary changes or medication the eye environment returns to the more normal salty so the shape changes again so you then notice changes in your vision.
Once blood glucose is more stable it will usually settle down.
This is of course different to the potential risk of retinopathy but you should have retinal screening to check on that.
 
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