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Newly diagnosed Type 1

OscarC

Member
Messages
13
Hi Everybody,

I actually signed up a few weeks ago and have been dipping in to visit the forums to see what I can learn - I have been very impressed how supportive people are on this forum as from my experience of other forums (not just ones related to diabetes) it can get quite heated from time-to-time.

Apologies for what will be a long introduction as my diagnosis came about by chance and I'm still trying to wrap my head around it all.

I was admitted at the beginning of February to hospital with what was eventually diagnosed as severe COVID pneumonitis - was on oxygen for a fair while but thankfully was never quite bad enough to make it onto Intensive Care. On admission, it was noted that my blood sugar was very high and my initial HbA1C was 123 mmol/mol! My high glucose readings were partly blamed on the fact that I was taking fairly high dose steroids to treat my lung infection but I was commenced on treatment for Type 2 diabetes. TBH, my admission was all a bit of a haze and even now my memory of the whole thing is a bit sketchy at best. Initially on discharge, my main concern was the tiredness and breathlessness as well as getting hold of some decent quality food! During my admission, I did feel a little confused that I was told that I was diabetic but being offered predominantly things like apple/orange juice, sandwiches made from white bread, biscuits, tinned fruit to eat - most of the time I was so hungry isolated on the ward that I gratefully accepted whatever food was on offer.

After discharge, I had contact from my GP's surgery who told me that my antibody tests had come back negative and that I was indeed a Type 2 to be treated with insulin and Metformin initially. However, a few days later, I received a telephone call from a consultant diabetologist who having seen all of my blood test results stated that one of antibody tests had later come back as positive and after review of the rest of my results felt on balance that I was in fact a Type1.

So here I am now still trying to muddle through all of the information that I need to know to manage my diabetes - have seen the diabetes specialist nurses and dieticians who I have to say, have been excellent so far. I think they are trying to give me information in stages so that I am not overwhelmed with it all. I would be lying if I were to say that I found carb counting straightforward - I have the Carbs & Cals app and although it is helpful along with nutritional information on food packaging, they do not cover everything and then I find myself guessing (wrongly half the time!) or I deny myself food that I would like to eat. I had been quite pleased with myself initially as my BMs around meal before meal times has been pretty well controlled. However, I have now had a Libre 2 for the last couple of days and been very alarmed at some of the peak BMs after a meal that of course, I never saw when finger prick testing just before meal times. I'm also struggling to factor for food that has no carb content - can I really eat a big steak and not worry about insulin or do I have to factor in some insulin for the fat content later on? In addition to this as I am trying to rebuild some fitness up whilst recovering, exercise is having an unpredictable effect on my BMs too.

So, I finally plucked up to courage to post and get involved with this forum and hoping that I can learn from other members as I try to return to a normal life again. Thank you if you made it through my essay.
 
Hi @OscarC , and welcome!

You've really been through the wringer this year!

Most of your questions in your last paragraph are answered by trial and error, and patience. Learning takes time, and diabetes is a marathon, not a sprint. No need to do everything right within a few weeks, and both you and your diabetes team will need to recognise patterns before you can act on them.

As for the steak question, no carbs in steak!
People who follow a very low carb way of eating may find they do need to dose for the protein (not the fat!) but if you're having some carbs with most of your meals I'd start with ignoring this. Personally, I don't seem to need to inject for it.
However, I have now had a Libre 2 for the last couple of days and been very alarmed at some of the peak BMs after a meal that of course, I never saw when finger prick testing just before meal times.
What kind of peaks are we talking, and how long before they come down? A prolonged peak of 25 is something different than hitting low to mid teens for a short while.
You've only just started, give yourself time! With a hba1c of 123 you must have been running very high teens on average for quite some time.
 
Hi Antje77,

Thank you for you reply and for putting things into perspective for me! The peaks were just after main meals today (which I would expect) with a fairly quick rise and drop over a couple of hours to low teens - I was alarmed as this happened yesterday but my peaks stayed at around 9. I only have two days of data to work from but I was a little alarmed simply because I was introduced to the concept of being "in range" (set at 4-10 for me) by my diabetes team. I guess it's just my personality that means that being "out of range" for even a short time makes me uncomfortable ( I know that 70% within range is acceptable as reasonable control).

You are right in saying that I have only just started and I guess that I'm trying to run before I can walk. I'm still struggling with my insulin dosage as I seem to need much more than the often-stated 1 unit of insulin per 10g of carbs - I think I'm somewhere between 5-6g per unit but even then, it's a bit of a guess. I also don't know how to factor exercise into all of it yet (mainly because since discharge, I hadn't being doing any as I was too breathless). I had a hypo last week for no apparent reason and so I'm slowly learning that it's all a bit unpredictable at the moment. My worry is that while I am still signed off sick for the next few weeks and can experiment with this all in the safety of my home environment, how will I cope on returning to work?
 
( I know that 70% within range is acceptable as reasonable control).
And that's for long standing diabetics who have been playing this game for years!
a fairly quick rise and drop over a couple of hours to low teens
Perfectly acceptable. In time you're likely to learn how to play with the timing of your injection depending on the kind of food you eat. But for many a quick rise and drop is just how it is, without much worrying.
I'm still struggling with my insulin dosage as I seem to need much more than the often-stated 1 unit of insulin per 10g of carbs
This ratio is just a starting point to work from, and a rather random one. The only way to work out your ratio's is trial and error, and keeping notes, because we're all different.
We have members who only need a total of under 10 units a day, including long acting, and there's people like me on the other end of the spectrum, with 90 units of basal, plus mealtime insulin.
You might find your ratio's vary, possibly by a lot, over the day (and the weeks). I need at least three times the amount of insulin for the exact same food in the mornings than I need in the evening. For others it's the other way around. Starting to see a pattern with the trial and error here?
I had a hypo last week for no apparent reason
Erm, yeah. It happens. And it sucks. Checking your Libre a lot might help catching them before it happens, but don't fool yourself into thinking you'll be able to prevent every hypo. You won't. Seeing as you've already found out 70% TIR is acceptable, have you also seen how much time spent low is deemed acceptable?
how will I cope on returning to work?
What problems do you foresee at your workplace? Will you be able to scan away during work, and inject and eat as necessary? A little chat at the workplace may do a lot of good on them understanding your needs as a newly diagnosed T1. If this isn't enough, you do have legal rights:

The Equality Act 2010 protects people with type 1 diabetes from discrimination at work, and requires an employer to make reasonable adjustments for disabled employees and job applicants who are disadvantaged as a result of their disability, like taking a short break to treat a hypo or check your blood glucose level.
(Copied from here: https://jdrf.org.uk/information-support/living-with-type-1-diabetes/everyday-life/work/#:~:text=The Equality Act 2010 protects,check your blood glucose level.)
 
What problems do you foresee at your workplace?
The people at work are great - I'm sure that they will make necessary adjustments. It's just that my work can be quite variable and at times unpredictable so it won't be as easy as it is currently to keep an eye on blood sugar levels/insulin/"fixed" meal times etc.
 
Hi @OscarC ,

Welcome to the forum.

Glad you plucked up the courage to say hello.

All I can say at this stage for you is take it at your own pace.
Although, it is great you have a Libre. Fantastic tool.
What can happen when you go low is the sensor takes (for me.) twice as long to show a rise on treating it than a finger prick test does & even to how I feel comming back up?
So a hypo on a Libre graph can look like you were low for longer??

What insulins have you been prescribed?

Return to work, job wise. What do you do?
 
Sounds very good regarding your workplace!
You mentioned carb counting before, are you already adjusting your mealtime insulin to the carbs you'll eat?
In an ideal world, our basal insulin keeps us steady and we use the bolus to deal with food. (of course there's a bit more at play but as a base this somewhat works)
So as soon as you're adjusting your bolus insulin to what you'll eat there is no need for fixed mealtimes.

Your workplace being nice likely means you can flip out your phone or reader every 30 minutes for a quick scan if you like. This means you'll likely be able to react to anything which happens before it becomes a problem.
 
Hi @OscarC ,

Welcome to the forum.

Glad you plucked up the courage to say hello.

All I can say at this stage for you is take it at your own pace.
Although, it is great you have a Libre. Fantastic tool.
What can happen when you go low is the sensor takes (for me.) twice as long to show a rise on treating it than a finger prick test does & even to how I feel comming back up?
So a hypo on a Libre graph can look like you were low for longer??

What insulins have you been prescribed?

Return to work, job wise. What do you do?
Hi @OscarC ,

Welcome to the forum.

Glad you plucked up the courage to say hello.

All I can say at this stage for you is take it at your own pace.
Although, it is great you have a Libre. Fantastic tool.
What can happen when you go low is the sensor takes (for me.) twice as long to show a rise on treating it than a finger prick test does & even to how I feel comming back up?
So a hypo on a Libre graph can look like you were low for longer??

What insulins have you been prescribed?

Return to work, job wise. What do you do?

Hi Jaylee,

Thanks for your message.

I agree that the Libre is a great tool - think I’m lucky that my diabetes team prescribed one for me so early on. It has caused me a little anxiety as I find myself checking it all the time but then again, the warning of possible hypo has been great and I’ve avoided two so far because it alarmed. One just this evening!

I’m on Levemir and Humalog.


I work for the NHS as a surgeon.
 
You mentioned carb counting before, are you already adjusting your mealtime insulin to the carbs you'll eat?

Yes. My basal insulin seems to be pretty steady - my Specialist nurse seems to have got it spot on when she set my level after switching me from the mixed insulin initially used to treat what was initially thought to be Type 2 diabetes.

I’m using various apps to help me carb count and plan. At home it’s relatively easy at the moment as I can read the nutritional information on most food and I bought some mini scales to help me weigh portions. It’s not always straightforward as tonight demonstrated as I overestimated the amount of carbs in a Chinese takeaway we had tonight as a rare treat and my BM fell a bit - grateful to the Libre and it’s alarm. What I return to work it will not be as easy to do all this unless I prepare my own pack lunch beforehand (which is something I’ve never done).

So far, the trends that I can see are that eating what I thought was a sensible choice of whole meal toast at breakfast is the thing that really causes spikes in my BM. I am currently avoiding the likes of rice, potatoes and pasta. If I simply eat meat/chicken/ fish and vegetables/fruit, my BMs don’t seem to peak or trough as much and I’m pretty much in range all the time. In my own mind, I am therefore better (for now) sticking to a low carb diet. However, my dietician although very encouraging has suggested a “balanced diet” which includes carbs and so I find myself finding carbs to add to my meals to achieve this. Some of my friends who are also type 1 diabetics are trying to sell me the idea of eating normally and simply using my short-acting insulin to “cover” whatever carbs I happen to eat. It’s all a bit confusing for a newbie!
 
@OscarC Welcome. As @Antje77 says most of your questions are answered by trial and error.
As you are finding out, diabetes is not something you balance after a few weeks and find a doddle to manage. There are far too many variables, due to being a human being and not a robot. Food is obviously our main variable. In this you have to find your own way. I started out sticking to a healthy diet which included brown grains, rice and pasta. Very rarely ate anything sweet unless hypo. In the early days a frightening aspect. Something which I am more relaxed about over 7 years in. I then started to read more and join forums and my knowledge and thinking shifted. Today I eat a lower carb diet as I enjoy it more and have had good results. However, that doesn’t mean I am strict every single day. In fact today a portion of my homemade, sugar free but not carb free Christmas pudding is on the menu. Last week I treated myself to Pizza, a hard slog to manage but very enjoyable.
I think your idea to take pack up to work is a good one. Certainly in these early days. It means it is there without you having to organise it, will already be carb counted, you will be able to inject without having to work it out. Very important in view of your job.
You will get there, slowly but surely. You are obviously very intelligent, so read up, there are many great books-Think like a Pancreas by Gary Scheiner- comes to mind. There are also books to help you manage when exercising. Personally, I would also do some research on basal insulin’s. Humalog is quite an old one and I am surprised as a newby you have been put on it. I know in my area they were pulling people off it 4 years ago.

My best advice would be. Treat each day as a new challenge, do not look back and beat yourself up about yesterday’s high/low numbers. They happen, more often than we may like. But hey that’s life.
 
What she said! :rolleyes:

As for packed lunches, I'm starting to think I'm lucky to live in a country where packed lunches, both in school and in the workplace are the norm, and provided or bought lunches the exception. Much easier, and because everybody does it no reason at all to get annoyed over your diabetes.
 
@becca59 and @Antje77

Once again, thank you for your support, advice and insight.

The last 24 hours has been interesting. Last night I tried a takeaway but overestimated the amount of carbs so found my sugars dropping and having to drink some Cola to make up (which I thoroughly enjoyed by the way!).

My Libre has been alarming a few times today for dropping BMs despite me trying potatoes for the first time since diagnosis (experimenting a bit to see what foods do what to my blood sugars) and matching my “usual” insulin dose for carbs eaten. Of course it then dawned on me that in my attempt to improve my fitness (the bad weather putting me off my usual walk with the dog) by spending 20 minutes on an exercise cycle (the discomfort of the saddle preventing me from carrying on any more!) has probably reduced my insulin requirement today.

You have all pointed out to me (and I am slowly getting it now!) that it will take time and much trial and error before I reach any sort of normal pattern so I’m trying not to dwell too much on numbers and readings. At least for now, I can make my mistakes in the comfort of home!
 
So I’m still trying to experiment with trying to return to a more normal diet (for me!) and seeing if I can still maintain good control. I ate a pretty large meal late in the evening that was quite protein (meat) heavy. I split my short acting insulin into two doses (it was a fairly large dose for me) as advised by my nurses - one before eating and one shortly after. This avoided the big post meal spike that I sometimes get with a carb heavy meal quite nicely. However, my blood sugar then started to rise an hour or so after midnight and remained elevated all night and into the morning. It wasn’t a huge rise (8-9 mol/l) and within my target range of (4-10) but given that I normally run at 5 overnight, is it something I should take extra insulin for next time, say an hour or two after eating?
 
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