Newbie - Type 1

[cypriot_enigma]

Hi All,
I've recently been diagnosed with type 1 diabetes (awaiting antibody test results but my ketones were 7.3 when I went to A&E and I am 29 and not overweight so the diabetes team are pretty sure it's type 1) following a stay at the hospital and a HbA1c of 171mmol/mol.

My diagnosis story:
I've had symptoms of being overly thirsty and weight loss for a few months, it came after 8 months of me doing at least 100km on a stationery bike each week so I naively assumed that it was a delayed affect of that after I stopped cycling as much in June.

I eventually called the GP and the clinical pharmacist sent me for a blood test on Thursday 23/09, they results came back the same day however no appointment was booked until Monday 27/09 although I later found out there was a note saying to book a appointment within 48 hours. I'm the meantime my parents and I bought a blood glucose machine where I consistently tested >20 mmol/L. So my family got my to call (I was fairly reluctant at the time labouring under the assumption if it was serious the GP would have scheduled an urgent appointment) decided to ring 111 who advised me to go straight to A&E where I was diagnosed and put on an insulin drip.

Currently:
I'm on Levemir as my long acting insulin and NovoRapid as my rapid acting. I've been told to take 8 units of Levemir twice a day (breakfast and bedtime) and 5 units of NovoRapid before meals. The initial advice was to eat as normal, following my meeting with the dietitian on Monday they said to aim for about 45-50g of carbs per meal so I don't have to vary my rapid dose. My current assumption is to just do 1 unit per 10g of carbs if I do vary my carbs in a meal but I'll learn more once I go on since courses get more information on how my blood sugar is affected by certain foods

They also have me some targets to aim for:
• Before breakfast: 5.5 - 7.5
• Before lunch: 4.5 - 7.5
• Before dinner: 4.5 - 7.5
• Before bed: 6 - 9

Currently I tend to be outside these ranges however my results recently have generally been below 10. I have had a couple of readings below these values but high enough not to experience hypo symptoms.

Since I was in hospital my eyes have changed, they're better than they were not still bag enough that staring at a monitor for work is difficult and my glasses are unusable.

I've also been tracking my foods using myfitnesspal which has been useful to try and hit my carb goals.

Questions:
• When first diagnosed would the tendency be to have your blood sugar a little high? For instance, my reading before bed last night was 6.7 however I tend to be much higher in the evenings and it comes down a fair bit so I ended up having a piece of toast with peanut butter as I'm not really sure yet how Levemir affects my blood sugar. This morning before breakfast I was 9.3 so it has gone up but not off the scale.
• I've read that it can often take about a month for eyes to revert back to how they were. It's this a gradual thing or will I wake up one day and my eyes have completely reverted back?
• How do you decide how to adjust long acting insulin?
• How did you cope with the lack of data when you were first diagnosed? I'm hoping to get a freestyle libre so I have a clearer picture of what is actually happening rather than just snapshots.

Everything is still a bit new but starting to get my head round it.

 

[Inka]

Welcome @cypriot_enigma 🙂 from another Type 1 (approaching 30 years for me). First to answer your questions:

- yes, it’s normal to be slightly high/above target in the first few weeks. This is because things are still settling and your doses might change. In addition, suddenly dropping from very high to normal blood sugars can make you feel a bit off and can also on rare occasions cause issues. My initial target was to stay under 12, then under 11, then under 10. My targets gradually tightened over the weeks. Also, safety is important, so avoiding hypos is sensible.

- yes, your eyes will go back to normal but this happens gradually over a few weeks or even months.

- you decide if you need to adjust your long-acting insulin in consultation with your team in the early days. It’s not unusual for your needs to drop. Longterm, you decide by doing a basal test to see if your Levemir keeps your blood sugar steady in the absence of food. Basal needs often change a little - for everyone with Type 1. They go up and down. The key to knowing if the amount is right is your blood sugar - and experience.

- I don’t have a Libre and have never had one. I fingerprick. If I think there’s an issue eg in the middle of the night, I set an alarm and test. I do that a few times to get enough data. There is such a thing as too much data. The important thing to know about Type 1 is that perfection isn’t possible. You’re trying to do the job of a pancreas but with limited tools. You control rather than conquer.

 

[Inka]

Type 1 is a condition where you have to become your own expert, but that takes time and experience. Go slowly and go cautiously. Diabetes is a marathon not a sprint. Two books about Type 1 are:

Think Like a Pancreas’ by Gary Scheiner.

And Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas (ignore the title - it’s great for adults too)

 

[cypriot_enigma]

Hi @Inka,
Thank you so much for all the advise and welcoming me to the forum. It is really interesting to hear about the target setting and how you gradually lowered them. I'm a little apprehensive to aim to lower them too much so I can avoid hypos, plus based on my HbA1c I've had high blood sugars for a while so such a drastic change might not be great for my body.

It sounds like the Levemir and getting everything under control will happen with a bit of experimentation over time but I'll need to keep constant tabs on everything as insulin requirements may change. The basal tests sound like something I'd like to explore over time once I'm a little more settled and confident.

Very good to know that my eyes will revert back, I'm hoping sooner rather than later as my job is screen based especially at the moment as I am working from home so all my meetings are video calls.

Thank you for the book recommendations, the reviews look really good. I've found the majority of diabetes are aimed at type 2 given that most people with diabetes are type 2 so any type 1 specific books are a great help!

 

[helli]

Welcome @cypriot_enigma
It sounds as if you are taking your recent diagnosis in your stride.

The only thing I would add to the great advice from @Inka is that it may be worthwhile purchasing a pair of ready reader glasses to get you over the next few weeks of screen work. It is never advised to get a new pair of expensive prescription specs but you can purchase a pair of ready readers from Poundland for ... a pound
That price is not as obvious as it used to be. I saw something in Poundland for £3 the other day!

Feel free to ask more questions, rant or just chat to people who understand. That's what the forum is here for.

 

[SB2015]

Welcome to the forum @cypriot_enigma from another T1.

Firstly congratulations on getting your head round things so quickly. @Inka has answered your specific questions in full, and I would just reiterate the fact that it is impossible to get perfect levels. We each just do the best that we can with whatever tools we are using.

I used a Libre in the past and found it very helpful for heading off highs and lows, and also learning how my levels reacted to specific foods. We are all different and we just find out what works for us.

Do come back with any other questions. Nothing is considered silly on here, and there is loads of experience to tap into.

 

[cypriot_enigma]

Thanks @helli & @SB2015!

Still a bit of a shock but I am glad I now know what I am dealing with. Slowly getting my head round everything and getting used to counting carbs and the process of checking blood sugars and taking insulin before meals.

I did go to boots and another pharmacy to try and get some reading glasses but they were all making my vision worse. They were all positive prescriptions whereas although my eyes have gotten better I am still short sighted. I've got some -1.0 prescription glasses arriving in the post today which I am hoping will help.

Interesting to hear your experience with the libre was positive, I have signed up for a study by Exeter that would require me to try a supplement drink and provide some blood samples, as part of it I'll get a libre for a couple of weeks which will give me the chance to test it out.

 

[helli]

Interesting to hear your experience with the libre was positive, I have signed up for a study by Exeter that would require me to try a supplement drink and provide some blood samples, as part of it I'll get a libre for a couple of weeks which will give me the chance to test it out.

If you want to try a Libre before the study starts, you can register for a free trial on the Freestyle website
However, take care not to become overcome by the amount of data when you are just starting out.
During the honeymoon period, you still have some insulin producing cells and some which are dying but may suddenly jump back to life. Therefore your levels may be less predictable at this stage and trying to draw conclusions from Libre data can be incredibly frustrating - diabetes burnout is a genuine risk.
When I was diagnosed, I had no option for a CGM - it was just finger pricks. I am grateful for this because I could focus on the new process of injecting for my meals rather than the constant data that is available to me now.

I appreciate we are all different and information may be very important to you. Just take care that you understand how to convert the data you get from Libre into actionable information. For this you need to understand its limitations and the limitations of your diabetes management.

Don't get me wrong, I love having a Libre now and I am a constant tweaker with my insulin doses based on what it tells me which gives in a not too shabby numbers. But a few months at the start with less close control is unlikely to lead to lifelong complications.

 

[Inka]

I agree with everything @helli says above except the last bit. It’s perfectly possible to have excellent control without a Libre 🙂

 

[everydayupsanddowns]

Welcome to the forum @cypriot_enigma

Sounds like you have made a great start!

It can be a bit overwhelming in the early days, so take things gradually and allow yourself time to adapt.

Those guidelines you’ve been given represent the optimum values, but no one would be expected to hit those levels all the time. In fact the international consensus on time in range suggest that you can spend almost 1/4 of your time above range and still have an on-target HBA1c 🙂