New to insulin. . Late onset type 1 feeling a bit desperate

[Justkeepswimming83]

Hi Everyone.

This is my first post here. . . I have late onset type 1 which I had been honey mooning with for the past 8 ish years. . .(picked up in my last pregnancy) I am now 37.
This Year has been pretty sucky with a breast cancer diagnosis weeks before lock down. . . And I had to start insulin after my first chemo. A nurse came to talk to me literally while I was sat in my chemo chair and talked me through it and since apart from phone calls with her I have been on one own. . . ( started insulin in may) I am now nearing the end of 20 daily radio session's (4 left) and quite honestly falling apart. I am struggling to keep a hold of checking my sugars and if I skip that I also skip my injections which I know I must not do.
I had my yearly review yesterday. . .6 months late due to both the virus and of going through chemo and I was honest about not coping. . But it was dismissed.
What's usually done when you start on insulin? I am not happy with my along sugars or my control but she just said it looked ok on her screen and my hba1c is now 7.1 so she didn't offer any help me advice at all.
The only stuff I was told or given back in may was a diabetes UK leaflet and told to tell Dvla. Sorry this is a waffling long post. . My blood pressure was also quite high yesterday and having to have that checked daily now. . . The nurse was concerned about that but the consultant didn't even mentioned it and we only discussed it as I said about it and the they fact the nurse had remarked it was high.

 

[NicoleC1971]

I sent you a hug because it sounds as if you are having a tough time having been diagnosed whilst going through cancer treatment at a time when you might normally have had some face to face support so well done on getting through with a decent hba1c and you've found this forum which has plenty of type 1s to support you.
it sounds as if you want to feel more comfortable/confident with this though and this will come through practice but the basics are as follows:
1 Do a basal insulin check - if your background levels of insulin are right this makes the meal time dosing a lot easier.
If you have the energy to do it, check your bg s every 4 hours to get an idea of if it is going up in the night time or at certain points in the day or conversely sending you low (below 4).
If you can afford it, spend £50 on a freestyle libre sensor so you can see what's happening 24/7 without finger pricking (they may send you a free sample) provided you scan your sensor every 8 hours or so.
https://www.freestylelibre.co.uk/li...kTCbIGEgTlmZianIplUNOG7m4_TS-OpxoChlEQAvD_BwE
Ideally at this point you'd have some useful data to show your consultant or diabetes nurse so that they can help you tweak the dosing. If you decide to do this solo then I'd advise keeping changes small e.g. 2 units up or down.
2 When the basal is done you can focus on the bolus. It is important to note that this is an art and not a science so don't expect to be perfect at it. None of us here are!
Do you have a few meals that you regularly eat and enjoy or tolerate ? It could be a 'ping' dinner or cheese on toast. It can just be a Mars bar if that is what's best for you right now.
You could work out how many units you need to take to 'cover; the meal and this gives you a rough ratio of insulin to carbs that you can use for other situations. A good starting place might be 1 unit for 10g carbs but keep the sweet drinks handy and check bgs 2-4 hours afterwards to see how the dose worked.
Not sure how your appetite is now as I've never had to go through what you are doing now but I think it is true that being reasonably consistent with meal timing and quantities will help you avoid feeling even grottier because you've gone low or too high.
So again do ask on here because as a newbie on insulin you are supposed to be a little overwhelmed and possibly fed up!

 

[EllieM]

Welcome to the forums. No one wants a T1/LADA diagnosis, but it does sound as though you've been dealt an unusually bad hand as regards moving to insulin at the same time as chemo and lockdown. This forum is international, so any time you want some moral support there should be someone awake to give you some (virtual) help.

An hba1c of 7.1 is actually pretty good (by my standards anyway, and I've had a wide range of hba1cs in my 50 years of T1). So your nurse probably isn't worried because she's seeing other people with levels of 8, 9 and above....

A couple of questions
1) Do you know if you're still producing any insulin. If you are then you can expect your insulin needs to gradually go up....
2) Are you on a basal/bolus regime? (Some new diabetics get put on a fixed dose where they have to match their food to their insulin.) What are your current insulin(s)?
3) Which country are you living in? (Though T1/LADA does not respect geographical boundaries, treatment protocols and emergency numbers do, and though most of the folk here post from the UK, your hba1c is using units that suggest you could be elsewhere).

Try not to panic. Getting the hang of T1 is very much a long term process, there will be ups and downs. But best to try very hard not to skip insulin injections. You'll feel much healthier (and happier) if you have enough insulin on board. A freestyle libre would certainly help the blood test situation, but they are expensive if you can't get them on prescription (the UK's fairly mean about giving them to T1s, but I would have thought that you could play the chemo and the stressed out cards and see if they will let you have one, even if only for a trial).

Good luck. Sending some virtual hugs your way.

 

[Daibell]

Hi. I don't fully agree with your nurse. My DN tries to get me nearer 6.5% which makes sense. I'm sure if you persevere with the insulin dose management you will get there. Also keep the carbs sensibly down.

 

[Justkeepswimming83]

Thanks for the replies. . I am UK yes. She (the consultant yesterday) did say another number first then said it converts to 7.1. . . Think it might have been 54? My sugars are sometimes up to 15 odd pre meals which I am thinking is too high . . .yet she didn't seem bothered at all and didn't say anything at all about the fact I was honest about missing blood checks and injections. It's like I am trying to juggle too many balls and some thing has to give and at the moment it's this. . . . I am taking levemir and novorapid. . . (20 Levemir am and at tea. And n rapid. .10 breakfast 20 lunch 20 tea. ) I really do need to lose weight as well. . . I did any way but have piled on quite a bit since Feb. . Fair bit of comfort eating going on with isn't helping! I did tell her that yesterday as well but nothing was said.

 

[EllieM]

Thanks for the replies. . I am UK yes. She (the consultant yesterday) did say another number first then said it converts to 7.1. . . Think it might have been 54? My sugars are sometimes up to 15 odd pre meals which I am thinking is too high . . .yet she didn't seem bothered at all and didn't say anything at all about the fact I was honest about missing blood checks and injections. It's like I am trying to juggle too many balls and some thing has to give and at the moment it's this. . . . I am taking levemir and novorapid. . . (20 Levemir am and at tea. And n rapid. .10 breakfast 20 lunch 20 tea. ) I really do need to lose weight as well. . . I did any way but have piled on quite a bit since Feb. . Fair bit of comfort eating going on with isn't helping! I did tell her that yesterday as well but nothing was said.

OK, it sounds like you are on basal (lantus) and bolus (novorapid) but they haven't yet taught you how to count carbohydrates?

www.bertieonline.org.uk

might be useful to you if you want to learn how to carb count, but I appreciate that you may not want to have yet another task stacked on your plate just at the moment.

In the long term, your basal will carry you through the day and night so that your blood sugar stays level when you don't eat.

Then, when you eat you'll have a carb ratio (eg 1 unit of insulin for 10g of carbs, but some people need 1 unit for 20g and others 1 unit for 2g so it's very much dependent on the person and their body). Your clinic should help you to calculate this.

Correction doses : eg 1 unit of insulin brings you down by 2 mmol/L. This amount is also massively variable, so your clinic should help you work it out.

So suppose you have a meal of 60g of carbs, your starting level is 11mmol/L (you want it to be 5) and your insulin ratio is 1 unit for 10g of carbs, your correction ratio is 1 unit per 2 mmol/L. You'd have 6 units for the food and 3 units for the correction, giving a total of 9 units of novorapid.

Your clinic is probably trying to not overload you, but that is the sort of calculation you'll be doing in the long run. Correction doses are very important, because your blood sugar can go up for all sorts of reasons (eg illness).

Good luck again

 

[VashtiB]

Hello and welome

Another hug from me- I'm a type 2 so no help to you at all but there are some great type 1s here who can give you some advice. the post from @EllieM looks like a good place to start.

It sounds like you've had a terrible time. It can be very overwhelming g even without the added factors of cancer and the virus but there will always be someone here who is willing to listen and offer support and advice

just know that it is totally okay to vent here- I certainly have found that useful. Hope to see more of you around the forum

good luck and welcome.

 

[searley]

I was diagnosed 10 years ago miss diagnosed t2

I've just been diagnosed t1 later onset I'm now 47

I was just honeymooning for the last 10 years... I still get days when I'm producing a bit of insulin

I've got to the stage now where I just don't let it bother me anymore


But I can see why it gets to people..

I'm lucky I'm in a good area care wise and now that I'm classed t1 I'm getting any help I need including starting on a pump next week


Might be worth seeing the gp and insisting on better care and advice??