Newly diagnosed with type 1its a bit like herding kittens!

[SaraKaya]

Hello,
I was newly diagnosed in September. I lost three stone in three months ( an unexpected bonus!) had everyone saying how well I looked but I was feeling terrible. Didn’t want to bother my Gp but when my eyesight started to deteriorate at a rate of knots I made an appointment.
diagnosed with a 149 mmol/mol and enough ketones to make a few pear drops!!
taking Humalog 2units (typically) with Absaglar 10 units.
It’s taken 3 months for my sight to stabilise but it’s ok now, I have worked really hard to get my levels to 5-7 on waking and 7-9 after meals and bedtime. I was in the high teens for the first two weeks.
I find the Carb and Cals app really helpful and makes me realise exactly what i am eating. I cook from scratch which helps enormously in knowing what you are eating!
I didn’t factor in stress and the now dreaded honeymoon phase though! Sometimes I don’t even know what causes a spike or a low it just sneaks up on you! Some foods you think are ok numbers wise don’t work and can give a high reading it’s baked beans for me! Sometimes I must sneak out a last minute bit of my own insulin and then I am into low territory and feeling dizzy and sweaty! It’s no honeymoon!!
I also have had a few technical difficulties especially when I replace my humalog cartridges. I have a savvio lily pen but have to ‘pump’ the cartridge lots to get it to dispense that first dose! I didn’t know this and had my first diabetes meltdown! Doing all this via remote control and YouTube has been tricky but getting there! I also found the blood testing tricky to start using up so many strips and getting the dreaded ER 3 code on my glucose meter!!
this is my first post but I have found the forum so helpful and it has made me feel I am not alone and I am not doing anything wrong when it all goes pear shaped!! Thank you

 

[Squirrel768]

Hello,
I was newly diagnosed in September. I lost three stone in three months ( an unexpected bonus!) had everyone saying how well I looked but I was feeling terrible. Didn’t want to bother my Gp but when my eyesight started to deteriorate at a rate of knots I made an appointment.
diagnosed with a 149 mmol/mol and enough ketones to make a few pear drops!!
taking Humalog 2units (typically) with Absaglar 10 units.
It’s taken 3 months for my sight to stabilise but it’s ok now, I have worked really hard to get my levels to 5-7 on waking and 7-9 after meals and bedtime. I was in the high teens for the first two weeks.
I find the Carb and Cals app really helpful and makes me realise exactly what i am eating. I cook from scratch which helps enormously in knowing what you are eating!
I didn’t factor in stress and the now dreaded honeymoon phase though! Sometimes I don’t even know what causes a spike or a low it just sneaks up on you! Some foods you think are ok numbers wise don’t work and can give a high reading it’s baked beans for me! Sometimes I must sneak out a last minute bit of my own insulin and then I am into low territory and feeling dizzy and sweaty! It’s no honeymoon!!
I also have had a few technical difficulties especially when I replace my humalog cartridges. I have a savvio lily pen but have to ‘pump’ the cartridge lots to get it to dispense that first dose! I didn’t know this and had my first diabetes meltdown! Doing all this via remote control and YouTube has been tricky but getting there! I also found the blood testing tricky to start using up so many strips and getting the dreaded ER 3 code on my glucose meter!!
this is my first post but I have found the forum so helpful and it has made me feel I am not alone and I am not doing anything wrong when it all goes pear shaped!! Thank you

Welcome, @SaraKaya . I agree, the forum is a very helpful place, for encouragement and advice, especially when we go through a rough patch. It sound like, despite the challenges, you are already making amazing progress in mastering this new challenge in your life

Touch longer as T1 here (like, by 32 years LOL) but I remember my 'honeymoon period'. I wasn't running as high as you were, but when I lost a stone in a fortnight, and was falling asleep at the slightest provocation, I went to my GP. Immediately diagnosed, and booked to go into Birmingham General that afternoon (a Friday). Back to hospital on the Monday for a 4-day stay to be stabilised and taught how to manage my new condition! So much easier nowadays - back then, check levels with a urine dip and match the colour chart - zero glucose meant not high, and zero hypo meant not low LOL).

Within a few weeks, my insulin requirement started to tail off, and I was actually not needing any - my consultant kept saying it wouldn't last, but even he was amazed that it was for about 18 months! (I know, not everyone is blessed with a long time ...) and I was so thankful that I had been able to learn to monitor and adjust my doses accordingly (guess it was their own version of what later became the DAFNE course). Yes, eventually, it did start creeping up again, but trying to draw up 1 or 2 units of Insultard was harder work than I thought it would be So easy to overdose at those levels!

Now, years later, and 9 weeks into using Libre sensors, plus blood test meters, insulin pens and cartridges, etc. life has become so much easier for us all to try to keep on top of our T1D.

So, don't panic as everything is settling down, and you are getting into your stride with mastering this. Remember, when it seems to go pear shaped, it isn't a defeat, it is a hurdle. Climb (or jump) over it, and carry on running with the rest of us

 

[freesia]

Hi @SaraKaya and welcome to the forum. It sounds like you are getting to grips with your diabetes and doing well. Don't stress about the odd spikes or lows. We all have them. Sometimes you can identify what caused them, other times you won't have a clue, just put it down to the Diabetes Fairy who comes along and puts a spanner in the works just when you think you've cracked it. Cooking from scratch is great and i've found it much easier to try and plan a menu for the week so i know what i'm having rather than grab something quick and not so healthy or higher carb.
Any qusstions, come on here. There is usually someone who has had a similar problem/question. Remember..no question is too silly.

 

[Flower]

Hello and welcome @SaraKaya glad you've joined us

Sorry to hear about your diagnosis , it is a huge shock and you have to hit the ground running. Herding kittens is a great analogy especially when you have recently been diagnosed and it is all so new

There is an excellent book- forget the age references in the title- it is an excellent reference book for dealing with all things Type1.It is an investment but well worth it for the up to date information. It is updated and the 7th addition is the latest I think. https://www.amazon.co.uk/Diabetes-C...p-185959798X/dp/185959798X/ref=dp_ob_title_bk

Keeping a record of everything you do - food eaten, carb count, insulin dose given , blood sugar before and after eating etc is a really good way to build up a picture of what is going on and it is so useful to look back on what worked and what wasn't so successful. I use the mySugr app there's a free version where you can enter all the usual stuff and keep a record - other apps or a notebook are available!

The so badly named honeymoon phase is a challenge with your struggling pancreas squeezing out some insulin just when you don't need it and causing problems. All you can do is what you're already doing and monitor, record and react to the results.

Things do settle into a new normal. This forum is so helpful for information, support and being part of a wider group of people dealing with the same diabetes challenges and for having a rant if that's what you need to do.

 

[SaraKaya]

Hello and welcome @SaraKaya glad you've joined us

Sorry to hear about your diagnosis , it is a huge shock and you have to hit the ground running. Herding kittens is a great analogy especially when you have recently been diagnosed and it is all so new

There is an excellent book- forget the age references in the title- it is an excellent reference book for dealing with all things Type1.It is an investment but well worth it for the up to date information. It is updated and the 7th addition is the latest I think. https://www.amazon.co.uk/Diabetes-C...p-185959798X/dp/185959798X/ref=dp_ob_title_bk

Keeping a record of everything you do - food eaten, carb count, insulin dose given , blood sugar before and after eating etc is a really good way to build up a picture of what is going on and it is so useful to look back on what worked and what wasn't so successful. I use the mySugr app there's a free version where you can enter all the usual stuff and keep a record - other apps or a notebook are available!

The so badly named honeymoon phase is a challenge with your struggling pancreas squeezing out some insulin just when you don't need it and causing problems. All you can do is what you're already doing and monitor, record and react to the results.

Things do settle into a new normal. This forum is so helpful for information, support and being part of a wider group of people dealing with the same diabetes challenges and for having a rant if that's what you need to do.

Thank you so much! I have been using the forum for information for a while and like you all say someone somewhere has probably had a similar problem as you!
I record everything which helps me tremendously, thank you for the book and app recommendations ( the upside is I can justify spending money on nice diabetic stationary/ bags pouches... every cloud!!) keeping good records really does help especially when everything is over the phone now with consultations. My hair has started to fall out so when I read on here it was a common thing my stress dropped tremendously! Having bloods to check it’s not a thyroid thing also info found on here!! I feel more prepared for my chats with my diabetic nurse. I have had excellent follow up from the NHS and feel this has helped me hit the ground running! Sorry others have felt ‘abandoned’ that’s not good.

 

[SB2015]

Welcome to the forum @SaraKaya

It sounds like you are doing brilliantly already. Well done.

As @ Flower said the Honeymoon Period is a ridiculous name. I enjoyed my honeymoon but not my Diabetes Honeymoon. It just mucked around at irregular intervals with my pancreas deciding to join in again with no warning. Hearing cats is a good description of the start of things, BUT it does settle and you get to spot the signs of the anomalies.

The book by Ragnar Hanas that Flower mentioned is excellent. Ignore the age reference. I was diagnosed at 53 but still found all the information very useful. Also there is plenty of knowledge, and a lot of support, available on here. Any questions that you have Just Ask. Nothing is considered silly on here.

Well done on getting to grips with things so quickly. I look forward to hearing more, whether it is for more info, a rant (we all need them now and then), or some burning questions.

 

[Ralph-YK]

Welcome to the forum Sara.

 

[everydayupsanddowns]

Welcome to the forum @SaraKaya

Sounds like you’ve made a great start, and importantly you’ve already realised that perfection isn’t possible and that your diabetes can sometimes seem to have a mind of its own.

This list of 42 factors(!) which can affect blood glucose helps to explain some of the ‘randomness’

42 Factors that affect BG

A useful list for when you're making that 'piece of cake' calculation :) ETA: Article about the table: https://diatribe.org/42factors

forum.diabetes.org.uk

You might find some of the resources in the ‘useful links’ thread helpful too - especially the free online e-learning courses like DAFNE and BERTIE which can give you a good grounding in modern insulin therapy

Useful links for people new to diabetes

These links provide useful information, particularly to those newly-diagnosed. You can also browse the Recommended Books and Links sections for further information :) Contents: Type 1 Section Insulin Pumps Section Type 2 Section General Help and Information Section Complications and screening...

forum.diabetes.org.uk

 

[MrDaibetes]

Hi and welcome to the forum, I also found the book Think Like A Pancreas very useful so I would suggest you maybe get that book too.

 

[SaraKaya]

I have just got the book that Flower recommended by Dr Ragnar Hanas!
What a find! Brilliant content and explains things in plain English!
I had my first dabble with Fish and chips at the weekend and was pleased it went well, a bit of maths to work out the insulin, I went with an extra 5 units and the top tip of extra vinegar!! Kept everything below 7! What a result, it was just what I needed as the fear of ‘carbs’ and what I call treat foods was beginning to get to me. It’s such early days after diagnosis and although I am well supported by my diabetic nurse I have found the Forum really useful I am glad I discovered you all!
I am back to doing the odd waking night shift at work, dropping my Abasaglar by 2 units the night before to stop a low through the night and testing at intervals and having snacks between get ups! Does anyone else work nights and what do they find works for them?

 

[KARNAK]

Welcome @SaraKaya to our forum.

What a wonderful post and a great response from fellow members, keep doing
what you are doing, its great to have you onboard. xx

 

[everydayupsanddowns]

I had my first dabble with Fish and chips at the weekend and was pleased it went well, a bit of maths to work out the insulin, I went with an extra 5 units and the top tip of extra vinegar!! Kept everything below 7! What a result, it was just what I needed as the fear of ‘carbs’ and what I call treat foods was beginning to get to me. It’s such early days after diagnosis and although I am well supported by my diabetic nurse I have found the Forum really useful I am glad I discovered you all!

Glad it worked so well for you

I don’t work nights I’m afraid, but I think @Lizzzie does?

 

[Lizzzie]

Hello! I used to do 12-hours night shifts; I'm not sure what it is you do, but for me the trick was organising what to do about food in advance, to stop the ups-and-downs effect (there were always chocolates around from grateful clients, which can be a pain when you're stressed and they're *there.* Once I'd learned to leave the chocolates alone it was all good). I used to prefer working somewhere busy; working all night then sleeping all day (before the kids were born at any rate) because it was more predictable. At quiet places I spent a lot of time doing yoga with the door closed! High fibre breakfast cereals worked best for me at 'meal' times. Don't know if that helps.

 

[everydayupsanddowns]

Thanks @Lizzzie

Did you find you had to make changes to your basal for the times you were on shift? Or were your shift periods not long enough for your basal needs to change?

 

[SaraKaya]

Thanks @Lizzzie I do 24 hr care shifts and I also Nanny for a family so my work hours are a bit variable.
I use cereal bars in the night as a snack if my levels drop and I test through the night depending how many times I am up. Dropping my Absaglar by 2 units the night before a shift seems to help so I am continuing with that to stop going low in the night early mornings. I have looked into getting a libre freestyle GM but my GP says I don’t work enough nights to warrant a monitor ( I don’t test enough on a regular basis apparently despite my fingers being very sore if I am testing 8 plus times in a 24 hr period!) I think I cost the NHS more in test strips than the cost of the test pads!! I am happy to fund the ‘machine’ but I can’t run to the £100 cost of the pads
Have others found it difficult to access the libre? Is it just a postcode lottery?
I am still in the early days so sometimes my pancreas gets a bit enthusiastic and pushes out a bit of insulin without telling me which can cause a few problems. I have been reading Dr Ragnar Hanas’s book which I am finding useful.

 

[everydayupsanddowns]

Have others found it difficult to access the libre? Is it just a postcode lottery?

It was initially, but now there are mandatory criteria for the whole of England, and if you meet the criteria you should be able to access Libre without having to jump through ridiculous hoops!

NHS England » NHS England flash glucose monitoring guidelines for CCGs

Health and high quality care for all, now and for future generations

www.england.nhs.uk