Hi Everyone. Hope everyone here is doing well. Recent diagnosis Type1.5.

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PuckingPancreas

PuckingPancreas

Member
Relationship to Diabetes
Type 1.5 LADA
Pronouns
He/Him
Incorrectly diagnosed in 2017 with Type2. 7 years on October 2023 I went into sever DKA twice and then diagnosed with Type1. A month later I was diagnosed with LADA(Type1.5) diabetes.

Its overwhelming….HbA1C at 17%

This is the start of a new journey…here we go!
 
Welcome to the forum @PuckingPancreas

Gosh what a slog you’ve had to get here, and sorry it had to get to DKA before your diabetes type was properly identified.

It will be some adjustment for sure, but welcome to the wonderful world of insulin-on-tap, after so many years of dwindling production and meds not working no matter what you did.

Insulin has it’s own frustrations, of course, and diabetes will still be a fickle and contrary so and so, but as you learn to balance your menu with flexible meal doses, plus background insulin to keep you steady if you skip, delay, or miss meals, you should be able to eat a normal healthy diet, and get your diabetes back into its corner. Well most of the time anyway!
 
The frustrating thing about LADA is that it frequently presents as Type 2 and also, responds OK to Type 2 drugs for some time which can be short or long until they don't work any more and the only thing that does, is insulin.

Whatever goes awry with the body (or brain) if it can be treated successfully, well great, so let's just get on with doing that.

All of us will certainly be glad to offer you any advice we can and importantly try and answer all questions that might occur to you - which don't usually occur when you happen to be sat in front of a medical professional, but you think of afterwards - cos we've all 'been there'.
 
Hi Everybody,

Thank you so much for responding back, it feels great knowing that this forum exists as I feel more motivated than ever to put my head down and focus until i can reach my goal.

I have an adjustment disorder so I am only using basal insulin. They are slowly getting me on the insulin as part of the intensive insulin therapy.

I am actually having another issue which is whenever I inject sometimes pricking the skin is so painful my automatic reaction is to pull away and then I cant inject as I get this fear. I also sometimes get a burning pain when injecting the insulin and it feels like a needle hot till it’s red going in. This prevents me from being able to administer the full units.

For the reason mentioned above I have switched from Lantus to Levemir however the problems persist.

Im so new to all of this so in terms of the actual support and treatment i should be receiving Im not sure if i am because I feel like having 1 appointment every 2-3 weeks for an hour to talk about how I am doing with taking insulin. Do I have to figure the rest out lol

Exactly that, always forget all questions when at an appointment but remember randomly when at home. It will be really helpful to have everyone here with lots of experiences to answer any questions I have. !

I have so many different healthcare personnels telling me different things and it has left me confused.

My family still seem to think I caused this, never hear the end of it lol

P.s You can call me by my name…Naeem
 
the MOST significant issue now is I feel as though I have a sort of fear of taking it because of the instances it caused immense pain. The injections have left areas bruised or with small bumps.

anyone experience anything similar?

Also, doesn anyone know how accurate the Libre sensor 2 estimated HbA1C is?
 

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PuckingPancreas said:
I am actually having another issue which is whenever I inject sometimes pricking the skin is so painful my automatic reaction is to pull away and then I cant inject as I get this fear. I also sometimes get a burning pain when injecting the insulin and it feels like a needle hot till it’s red going in.
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Make sure you're using a modern choice of needle (so probably 4mm, 32G, and not 8mm or 12mm (as was used long ago)). Inject at right angles (so straight through the skin) and try and relax. It might be worth asking about different needles because they're not identical and you might just happen to have been given one that (for some reason) doesn't work for you.

If you're not pushing the needle its full length into the skin then injecting is likely to hurt. Similarly, if you try and inject the insulin too quickly that's quite likely not to be absorbed correctly and could hurt.

Regardless, it's obviously an important thing to try and resolve, so don't be worried about bringing it up with your healthcare team.
PuckingPancreas said:
Also, doesn anyone know how accurate the Libre sensor 2 estimated HbA1C is?
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Mostly depends how accurate Libre 2 is for you, which isn't something we can really know (though we can compare against our test strips to get some idea). I find it's useful to give an idea (so if it said 60 I'd suspect I was heading for an unusually high HbA1c, but when it says 40 or 50 I assume I'm at the usual (for me) low 50s; doesn't tell me much more than that, though).
 
I find there are areas within my injection sites (tummy, thighs and buttocks) which are quite sensitive and the needle can be quite or even very painful going in and other areas where it really doesn't hurt at all and I can barely feel it. I touch the needle to to the skin to try to find the least sensitive spots before I push it through. I find that stretching the skin helps the needle go through more easily, particularly on areas where I have a bit of cellulite. That can be either pinching between finger and thumb or stretching by pushing finger and thumb away from each other whilst gently pressing on the skin at the site I intend to inject.

I also experience stinging sometimes, both with Levemir and Fiasp. It doesn't happen every time and I haven't been able to figure out why it does it sometimes and not others. What I have found is that it builds to a level of discomfort that I can tolerate over a period of a few seconds and I know that it won't get any worse, so I just breath and relax and the stinging sensation diminishes until it is gone.

Occasional bruising and bleeding is also normal and just means you nicked a little blood vessel. I have several little bruises on my tummy at the moment but they fade after a few days.

If I am really unlucky, I hit a sensitive spot where the needle hurts and the insulin also stings going in and it leaves a bruise, but there are other occasions I am lucky and I don't feel it at all. After 5 years I just accept that that is the way it is. I think knowing that I can cope with the pain and that it will be gone in a few seconds helps me to get through it and just get on with it, but everyone's pain threshold is different and I can understand you finding it daunting. I wonder if the "TickleFlex" device might help you. If you do a Google search you will likely find info on it.

I agree though that you want 32guage 4mm needles. Some brands have different coating to help them slide in more easily and perhaps you are sensitive to the coating on some, so ask to try a different brand of the same size needle and see if that is any better.
 
I can identify with so much of what @rebrascora has just said to @PuckingPancreas about injecting and thus indirectly about injection techniques. The harsh reality is that we have to do this, several times daily, and no-one (I guess?, hope?) willingly wants to subject themselves to this necessity of injecting insulin.

The slightly curious thing is that injecting as a topic/question/concern pops-up periodically (not surprisingly) and yet a search within the forum topics just now [injection techniques] didn't bring specific answers. On 29 Jan 24 a different thread naturally moved into a concern about injecting, which triggered duplicate responses by @Inka and @everydayupsanddowns with links to advice on Injection Techniques - and again this didn't seem to emerge from my search just now.

@everydayupsanddowns, could there be merit in pulling the various bits of useful info on injecting into its own thread and pinning that near the top of the Newbies Section? Or getting something similar into the opening Welcome and Getting Started first segment of this Forum?
 
Perhaps people’s attention could just be drawn to the info about all the many topics on the Diabetes U.K. site @Proud to be erratic rather than having a lot of stickies, eg

Injecting insulin

You can inject insulin using an insulin pen and needle or some people use insulin vials and syringes instead of a pen. Or insulin can be released using a small electronic insulin pump which you attach to your body. If you’re an adult and need to inject insulin – or help a loved one inject...
www.diabetes.org.uk www.diabetes.org.uk

Then if they have additional concerns or specific questions due to their circumstances they could ask here.

@PuckingPancreas The right needles are important. I also ‘pinch up’. This reduces pain too. If it’s the insulin causing the pain, maybe you could ask about a swap. Some seem to sting more than others. Neither of mine do (when I use injections - on a pump normally).
 
Inka said:
Perhaps people’s attention could just be drawn to the info about all the many topics on the Diabetes U.K. site @Proud to be erratic rather than having a lot of stickies, eg

Injecting insulin

You can inject insulin using an insulin pen and needle or some people use insulin vials and syringes instead of a pen. Or insulin can be released using a small electronic insulin pump which you attach to your body. If you’re an adult and need to inject insulin – or help a loved one inject...
www.diabetes.org.uk www.diabetes.org.uk

Then if they have additional concerns or specific questions due to their circumstances they could ask here.

@PuckingPancreas The right needles are important. I also ‘pinch up’. This reduces pain too. If it’s the insulin causing the pain, maybe you could ask about a swap. Some seem to sting more than others. Neither of mine do (when I use injections - on a pump normally).
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Thanks @Inka, ultrafast response!

I do recognise we could get saturated with an excess of stickies and I personally don't particularly like having to scroll down past the pinned stickies to get to the recent posts. But injecting is pretty fundamental for insulin dependency and the link you've provided just doesn't leap out (for the 3rd time of looking for it - just out of my curiosity). There are a lot of useful "fact sheets" here about different diabetic matters and nothing that leaps out about injecting. Perhaps I'm expecting too much in one place; digital tech can do that and my own expectation can sometimes take me into some pretty confusing series of links or steps, to a point where I no longer know where I've go to. Or I'm just getting old?

I'm probably at a stage where I extensively use the Forum as my constant unofficial reference source, without really thinking about what I do want to get from this Forum, rather than a reference book or an open Google search. I am progressively becoming irritated and frustrated by Google (or similar) searches getting high-jacked by algorithms or AI (or probably both) trying to force feed me answers which don't answer my question.
 
PuckingPancreas said:
Im so new to all of this so in terms of the actual support and treatment i should be receiving Im not sure if i am because I feel like having 1 appointment every 2-3 weeks for an hour to talk about how I am doing with taking insulin. Do I have to figure the rest out lol
Click to expand...
Honestly, an hour every 2-3 weeks to talk about the insulin is absolutely an awful lot of 1:1 support. I don’t think I’ve heard of anyone getting that much time before. I get 20-30 minutes 1-2 times a year, I have had it for a while but even in the beginning of using insulin is was 20-30 minutes every couple months.

It does make sense to give you the support you need given your difficulties but just to set your expectations, diabetes definitely is something we have to figure out for ourselves yes. There should be a number you can call if really stuck and need some advice, we hear back within a week on ours then, though I wouldn’t say I call it more than once every couple of years. Some people call more, especially in the beginning.

Dont expect the drs to sort your doses out and then that to just be the dose you always take. Diabetes doesn’t work like that. The doses constantly change, and the decision on changing them (once you’ve settled into things) is a decision you make yourself without needing to see a medical professional every time.
 
Great answer @Lucyr,

Setting or managing expectations is definitely the key here for @PuckingPancreas. I constantly felt I'd like more "considered" time appropriate to my needs immediately after my surgery and my own GP, who I knew well and thought would help, made it extremely clear that neither she nor the Surgery were going to do that. I had a DSN who was a delightful person but clearly adrift of my needs as someone with no pancreas and "enjoying (not!)" the chemo experience etc; so spent most of my first year with no CGM, on the BG roller coaster from dreadfully low racing to equally dreadfully high.

In the end, after 9+ months, I broke out of the chemo fog, made the decision to not just own my diabetes but endeavour to understand a great deal more about it and in reading, learning, asking and at times challenging nonsense - I've arrived at my 4th anniversary yesterday feeling I can manage this well enough. Yes it's frustrating; yes it's fickle with inexplicable silly days; and yes it's (in)furiating at times.

@Pucking Pancreas much of what I know and understand today about my diabetes I've found from this Forum and rather less (well in truth very much less) from the NHS. I'm truly grateful a Surgical team recognised that my cancer could be resolved by major surgery and I had wonderful support from them for a while after; I also felt loved and cared for by the Nurses in the chemo Annex, afterwards supported by McMillan. But managing MY diabetes is MY responsibility and needs MY decisions on a daily basis. I apologise if that sounds harsh to you, @PuckingPancreas, at such an early stage in your new status after your diagnosis; there is plenty of knowledge around you within this Forum's membership and people here are willing to offer that knowledge and experience. Do ask about whatever might be worrying or mildly bothering you and someone will pick up your questions.
 
Not sure i undestand...OP do you get an hour every 2-3 weeks, or feel like you should get it?
To be honest, my diabetes managment only improved when i stopped relying on the medics and took control.
 
Hi Everyone,

I firstly want to just say thanks for all of the responses.

After reading your responses I realise my expectations is what was causing me to feel so confused. It has helped me to know that if I want to improve my BG levels and live a better healthy life, I have to be the one to drive that forward and no one else. @Lucyr @Proud to be erratic @Tdm The reality check was needed!

Seeing how everyone here manages their diabetes so well independently is really motivating. I appreciate How respectful everyone is on here as well!

I need to start educating myself further on every aspect of managing diabetes instead of expecting it to be done for me.

I have injected in a right angle and it did not hurt. @Bruce Stephens @rebrascora I will update you further on this later once I can put your advice into practice. I have just done a quick google search on the tickleflex. I will definitely be investing on one to see if it helps.

I think I do have the right needles as I think its just the unfortunate case where I got unlucky so it hurt. Lantus would usually burn when the insulin was going in and as a result I have been put on Levemir now. I have not had the burning pain since the switch however, there have been a few instances when it has hurt when the needle was going in. If this is something that comes as a package with diabetes, Ive already accepted it. I will of course put all of your advice in to practice!

Again, Thank you as this is exactly what I have needed in order to be able to take control!
 
I find some spots are just painful for injections...if i hit one i either keep going if its not too bad, or move half an inch away, where often i won"t feel it. A new needle may help as the occasional one may be bluntish.
 
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