New to Insulin, unsure...

[Yeoc]

Hi everyone,

I am a type 2 diabetic that did well with diet for about 7 years. Spent two years trying oral meds, but my stomach wouldn't accept any if them and I had gastritis for those two years. A scan showed that I was starting to get pretty bad erosion of the stomach lining...every time I came off the diabetic meds, it started to calm down. So I came off the oral meds. Did that and got blurred vision and really bad nerve pain in my legs...explain in a bit.

I already take an injectable medication, so the diabetes team thought I would be suited to being on insulin and this was the only option anyway. That said I think they are worried I might have hypos and want to keep the dose low, as my hba1c was not bad at 62 - their words.

Anyway they gave me a Lantus pen last Tuesday and said to take 6units at the same time each day, so not a meal based insulin, just background?

I got the Lantus pen Tuesday and was supposed to get 4mm needles with it, but they messed up my prescription...and gave me the wrong needles. They said they can't get 4mm needles in stock for a week and I have to use the 8mm needles I use on my other medication. Does this still sound ok? I hope so.

My numbers with a diary a week prior to the pen were typically 10nmol pre meal. I had the odd one as low as 8.6 and I had a few around 13nmol.

Only 4 days in with the pen, but my numbers are unmoved. Maybe a little higher if anything. I guess it is early, but I am getting fasting numbers of 11nmol. post meal after two hours of 14/15nmol.

No idea if anyone can make any sense of this...maybe the above is all minor, if so good lol. I am just unsure.

P.S

I am on a low carb diet, pretty strict.

My grandfather was type one and my mother and both/only siblings are type 2 and me and both/my only siblings are also type 2. So nobody from my mums side of the family down from my grandfather down is anything other than diabetic. Despite this I still get told all the time that this was my fault and lifestyle based...Mmm I used to be a tennis coach, spent decades playing four matches a week and running 20 miles a week lol.

I have a history of cancers, my first cancer was at 17. I have severe nerve damage in my legs, but not from diabetes, but from a drug called Cisplatin. That said, if I eat a meal with too many carbs, I get electric shocks in my feet from the pre existing nerve damage. Great fun lol.

^ Most of this is probably irrelevant...like I said, unsure.

Any thoughts are appreciated....

 

[Sally71]

Possibly you need a higher dose of the insulin, but your doctor will have to help you with that, we can’t tell you how much to take as everyone is different. They do tend to start conservatively though and tweak it from there, don't want you having hypos all of a sudden, and dropping much lower all of a sudden when your body is used to being on the higher end is not good for you anyway.

The size of the needles doesn’t matter much as long as they fit the pen, insulin only needs to go under the skin though, you don’t need to stick the needle very far in. Hence most people these days being given 4mm ones, hopefully you can get the right ones soon!

And ignore anyone who says it's your fault, they haven’t got a clue what they are talking about. Yes diet, weight etc can add to the risk but it's not as simple as all that, otherwise everyone overweight or not very active would have diabetes and everyone not overweight and active wouldn’t be, and that isn’t the case. Genetics and luck also play a part, and what is more important is how you manage it now you’ve got it. Hopefully your doctor can help you reach better levels soon. Good luck 🙂

 

[Robin]

Hi Yeoc, a couple of thing occur to me. Yes, it’s fine to use an 8mm needle with your Lantus injection, it’s what I was prescribed 10 years ago, since then, needle length has tended to get shorter and more comfortable, but it won’t do you any harm.
Your Lantus dose is quite low, and this may be for a good reason. Any sudden drop in blood glucose can exacerbate neuropathy pain, so your clinic is erring on the cautious side. You should keep in touch with them, and they may give you advice on gradually titrating it upwards til your numbers come with in range.
Edit,@Sally71 types faster than I do!

 

[Yeoc]

Thx Sally and Robin, both replies are as helpful as they are reassuring, v much appreciated!

Thank you.

P.S

What has knocked my confidence is the needle error by the gp. They were told to provide the 4mm needles and I used the wrong needle right off the bat. It's nothing more than a coincidence that my other med now takes a 8mm subQ needle. My prior medication used to have large intra muscular needles...I wouldn't like to think what would have happened if I tried putting that into my stomach.

The diabetic team seem to know what they are doing...I trust them at least.

 

[Bloden]

Hi there @Yeoc. 🙂 Are you jabbing Lantus into your stomach? I was told to inject basal into my thighs, deffo not my stomach because it gets absorbed more quickly in that area. The thighs (and buttocks?) are a slow-absorption area. Maybe it’ll help?

 

[trophywench]

Yeah, but that was because we were also injecting fast acting insulin 3 times a day as well as long acting, it was sposed to help site rotation.

If you inject at a bit of an angle rather than 'right angled' with a longer needle it might help reach the bit it's intended for, easier. If it hurts, don't do it again, cos pain usually means you've gone too deep.

Just curious now .... what definitive tests were carried out to show that you are still producing your own insulin?

 

[DaveB]

Hi. It sounds like your dose may need to be increased or even be moved to the Basal/Bolus regime with two insulins. Can you let us know what your BMI is as that can imply a level of insulin resistance. I'm surprised your pharmacy can't get the 4mm needles next day or so. My local Lloyds always keep good stocks and can get next day delivery on most meds.

 

[KARNAK]

Hello @Yeoc probably best stick with your hospital D team to get
those figures down a bit. I see you joined in April 2019 would be
great if you can keep us up to date with your Insulin requirements
and any figures through blood tests, especially HbA1c.

 

[Yeoc]

Hey Bloden,

I was given a link to watch for injections and it was for the stomach and the side of the leg. Just taken the Lantus in differing positions in the stomach, as I was unsure if a 8mm need might hit muscle in my leg...maybe that should not be a concern? The one thing with the link/video was it seemed generic and not about Lantus per se...but maybe that's fine? I don't know I am new to this, so it's beyond my pay grade lol.

Hey Trophy,

Part of the thing with me worrying if the needle is too long relates to my nerve damage. I can't feel injections at all. I mean, that's ok in so much as it doesn't hurt, but it also means I don't get to feel if anything is wrong. I just followed the video and have been injecting directly in at 90 degrees. Hope this is right?

I haven't had any tests for a long time and Covid19 meant this was all done via phone consultation. I tried for two years with all the oral meds and the gastritis was very bad in terms of the scans and with pain...If I could have been ok and tolerated oral meds I would have been happy to go with that, but...that just never worked out. Two years was a long time to grip the floor in pain, I couldn't do that anymore. think my medical history might relate to why I can't tolerate them. I had most of my liver removed from primary liver cancer at 17 (no alcohol and non cirrhosis - only person in Europe that year at that age and first like that in 25 years at Clatterbridge). The Chemo caused the nerve damage and is severe in my feet, lower legs and fingers, and the surgery for the liver means I can't feel my stomach, I overheard my surgeons say they removed my gallbladder (funny), maybe that has affected oral med tolerance? I can feel everything else lol, but I'm on strong painkillers for osteoporosis and that then means I can't feel the legs enough for such a small needle haha...you have to laugh, it is kinda funny. My kidneys were damaged by chemo too, had a second primary cancer at 25 but am ok now - cancer free for decades. Just left with loads of late effects, pituitary disease (GH deficiency - take injection for that), heart arrhythmia/mitral valve disease, high blood pressure, severe osteoporosis of the spine etc. My diabetes seems less bad than a lot of people though, not complaining. Most of the rubbish I have mentioned is just...well I think the late effects is probably why I can't tolerate the oral meds one way or another.

No testing on insulin levels though, for good or bad.

Hey Dave,

My BMI is almost certainly bad as I am overweight and have a belly on me. I never used to have this. I have spent more of my life underweight. I went from coaching tennis, playing four matches a week in two teams and running 20 miles a week and looking like an athlete after my cancers to all the Osteo stuff and my body breaking down. So from 2009 onwards I just put weight on. I get unhealthy looking consultants telling me I must do more and exercise. It's like telling a man with no legs to run. I used to be addicted to exercise, all I ever thought of once upon a time. If I were back in 2008, was in that shape now, I'd be at the tennis club signing up for teams and going for a run. I can't stand on my feet half the time, can't walk half the time. Getting some ill looking consultant telling me to do more grrrr. So irritating lol. Maybe the diabetic team will up my meds or change as you say...they seem professional and flexible.

Hey Karnak,

I'll post as things move forward. I think the diabetic team will get me there.

A friend has sorted me out with 4mm needles, so can rotate and do the leg now too.

Thx everyone for all the replies...v much appreciated.

sorry for waffling.

 

[Bloden]

Waffle away! We’re all ears.

 

[DaveB]

Hey Bloden,

I was given a link to watch for injections and it was for the stomach and the side of the leg. Just taken the Lantus in differing positions in the stomach, as I was unsure if a 8mm need might hit muscle in my leg...maybe that should not be a concern? The one thing with the link/video was it seemed generic and not about Lantus per se...but maybe that's fine? I don't know I am new to this, so it's beyond my pay grade lol.

Hey Trophy,

Part of the thing with me worrying if the needle is too long relates to my nerve damage. I can't feel injections at all. I mean, that's ok in so much as it doesn't hurt, but it also means I don't get to feel if anything is wrong. I just followed the video and have been injecting directly in at 90 degrees. Hope this is right?

I haven't had any tests for a long time and Covid19 meant this was all done via phone consultation. I tried for two years with all the oral meds and the gastritis was very bad in terms of the scans and with pain...If I could have been ok and tolerated oral meds I would have been happy to go with that, but...that just never worked out. Two years was a long time to grip the floor in pain, I couldn't do that anymore. think my medical history might relate to why I can't tolerate them. I had most of my liver removed from primary liver cancer at 17 (no alcohol and non cirrhosis - only person in Europe that year at that age and first like that in 25 years at Clatterbridge). The Chemo caused the nerve damage and is severe in my feet, lower legs and fingers, and the surgery for the liver means I can't feel my stomach, I overheard my surgeons say they removed my gallbladder (funny), maybe that has affected oral med tolerance? I can feel everything else lol, but I'm on strong painkillers for osteoporosis and that then means I can't feel the legs enough for such a small needle haha...you have to laugh, it is kinda funny. My kidneys were damaged by chemo too, had a second primary cancer at 25 but am ok now - cancer free for decades. Just left with loads of late effects, pituitary disease (GH deficiency - take injection for that), heart arrhythmia/mitral valve disease, high blood pressure, severe osteoporosis of the spine etc. My diabetes seems less bad than a lot of people though, not complaining. Most of the rubbish I have mentioned is just...well I think the late effects is probably why I can't tolerate the oral meds one way or another.

No testing on insulin levels though, for good or bad.

Hey Dave,

My BMI is almost certainly bad as I am overweight and have a belly on me. I never used to have this. I have spent more of my life underweight. I went from coaching tennis, playing four matches a week in two teams and running 20 miles a week and looking like an athlete after my cancers to all the Osteo stuff and my body breaking down. So from 2009 onwards I just put weight on. I get unhealthy looking consultants telling me I must do more and exercise. It's like telling a man with no legs to run. I used to be addicted to exercise, all I ever thought of once upon a time. If I were back in 2008, was in that shape now, I'd be at the tennis club signing up for teams and going for a run. I can't stand on my feet half the time, can't walk half the time. Getting some ill looking consultant telling me to do more grrrr. So irritating lol. Maybe the diabetic team will up my meds or change as you say...they seem professional and flexible.

Hey Karnak,

I'll post as things move forward. I think the diabetic team will get me there.

A friend has sorted me out with 4mm needles, so can rotate and do the leg now too.

Thx everyone for all the replies...v much appreciated.

sorry for waffling.

Thanks for the reply. It sounds like you may need to further reduce the carbs if you can? Excess weight can cause insulin resistance and you can be in a vicious circle with the insulin and needing larger doses. Exercise is always good but the right diet is usually the more important thing to focus on. Assuming you had Metformin at one time was that the Slow Release (SR) version?

 

[everydayupsanddowns]

Reading with interest @Yeoc

Another old skool injection trick for slightly longer needles where you dont have much flesh is to slightly (and gently) pinch up the area so you get a low hump of tissue and greater access to the s/c layer without poking into muscle.

More useful for 12mm needles that we had in the old days, but perhaps worth trying if your thighs are slim?

I am also wondering if full basal:bolus might suit you better (though if you are low carb your boluses are likely to be small

It will probably take you and your team a while to get your doses titrated properly, so hang in there in the meantime, and keep us updated with how you are doing.

 

[Yeoc]

Hey Dave,

My diet is the same it was from the first day I got diagnosed. I changed overnight to less than 60carbs a day.

I got my hba1c down to 42nmol.

I eat zero:

fruit
fruit juice
potatoes
pasta
noodles
rice
breakfast cereals
bread (other than low carb 3g a slice burgen)
chocolate
crisps
biscuits
cake
chips


My typical meals are things like:

lean chicken and halloumi
Mackerel and roast veg
Turkey and eggs
Halloumi salad no dressing
burgers without buns, halloumi fries

The exact same diet that rowed my 75 back to a 42.

I take a fasting glucose and sometimes it is 11nmol or 13nmol.

I just don't see what I can do from a diet perspective beyond going zero carbs.

I don't lose weight no matter what I do anyway. Two years back when I was much more physically able I went from doing nothing to zero carbs and walking 15 miles a week, every week - I didn't lose a single ibs in weight. I suspect the pituitary disease and other medications are a big factor. I know I can weigh a stone heavier from one day to the next, so guessing that part is water retention.

I'm just bored of hearing the diet angle, same goes for exercise. I'd be running 20 miles a week and playing tennis 4 times a week if it were up to me. I stayed on court playing tennis for years beyond what I should have...taking very strong meds just to try and limp on. I am on all kinds of meds that create weight issues like pregablin for nerve damage and other strong pain killers for the osteoporosis etc. And I know the diet worked for years and years whereas other diabetics saw their hba1c just shoot up within 3 years or less. I dunno, I just think things are getting worse at this point in my life...it's disappointing, but I mean, If the last thing you eat is two pieces of mackerel at 10pm and you test your glucose at 3pm and it reads 11nmol and that is with water and nothing else....what more can anyone do? I know about diets and exercise, I used to work in David Lloyd centers as a PTR tennis coach for a living. I'm just spannered now, where I find myself I mean.

P.S

What you said was good, sorry if I make it seem different, I don't mean to. Your thinking was excellent. I guess I am just so frustrated with busting it in terms of effort and it not panning out. It's like when I had the gastritis and I was told to just give the meds longer to settle in...y'know, that turned into two years of maybe give this one a bit more time. I'm really tired of trying and knowing that all roads seem to lead to failure. I think the only thing that is going to fix me now is enough or the right insulin. I'll still stick to the diet to try and stay better for longer whatever that means. I won't be taking more insulin to slack off on the diet I mean. But my body is letting me down I think. I can't see how much more I can do for it?

I do thank you for trying to help me with good thinking...so frustrated with things this end.

I was on three differing forms of metformin, two differing brands of slow release and a number of other meds including flozins - every med caused the gastritis to get severe and that's the xray speaking rather than me.

 

[Yeoc]

Reading with interest @Yeoc

Another old skool injection trick for slightly longer needles where you dont have much flesh is to slightly (and gently) pinch up the area so you get a low hump of tissue and greater access to the s/c layer without poking into muscle.

More useful for 12mm needles that we had in the old days, but perhaps worth trying if your thighs are slim?

I am also wondering if full basal:bolus might suit you better (though if you are low carb your boluses are likely to be small

It will probably take you and your team a while to get your doses titrated properly, so hang in there in the meantime, and keep us updated with how you are doing.

I'm carrying weight everyday, no issue finding flesh this end.

I think if I ate like some diabetics do...instead of quite strict low carb. Well, I think I would have been on insulin in the first year...like nearly a decade a go. If I ate a non low carb meal, I think I would get double figures in nmol in pre meal testing lol.

I don't think I would get an in range post meal test unless I didn't eat for two days.

My body shape is weird...very muscular/no fat on my legs from so many years of tennis and running. I carry no excess weight anywhere except for my stomach. I look stocky, but with a belly.

Your pinch idea was a good one...thx

Thx to everyone for listening and trying to help... especially with all my long winded self indulgent waffle.

 

[rebrascora]

Hi and welcome from me too.

Sorry to hear you are having such problems.

No need at all for you to apologise for providing plenty of background info ( certainly not self indulgent waffle in my book). It is far more useful to provide too much info and less frustrating for us than people who only tell you a 1/10th of what you need to know to help them.
I hope some of the posts are reassuring and helpful, but sometimes one of the best functions of the forum is just having the opportunity to offload some of the frustration in a place where other people can understand and empathise. Having a good rant occasionally is one of the benefits of the forum.... and you certainly have plenty to need to vent about than most of us, so please feel welcome to stick around and be part of our community.
I particularly like and would recommend the "7-day waking average" thread.... which is like a virtual coffee morning where we check in with our daily fasting readings and just exchange snippets of information about our daily plans/lives and discuss any diabetes related ups and downs.

Anyway, best of luck. I think you probably will need a significant increase in your basal insulin (Lantus). If you are properly Type 2 (and insulin resistant) then it is not unusual to need as much as 10x that dose or more, so liaising with your diabetes team to discuss increasing your dose would be the way forward. It is important to do this gradually under their guidance though, so get in touch with them and give them feedback regarding your diet and readings.

I also wonder if you might be LADA (Latent Autoimmune Diabetes in Adults) rather than Type 2 and would perhaps suggest you ask for C-peptide and GAD antibody tests, since you also have Type 1 in your family history.

 

[Yeoc]

Thx Rebrascora,

Everyone has been helpful and trying to help. Even where something might not be absolutely right for me I can see it is coming from a good place and very sensible overall/might be dead on for someone else speaking as I am. I'm very grateful for the help and reassurance and have just been going on too much. Most people have diabetes worse than me, nothing I should complain about. I'll see how things go, i'm sure it'll pan out ok.

You mention a couple of tests I haven't had, would they matter at this stage?

'When I got diabetes', I say it like catching a cold because it seemed to happen over a weekend lol. I was fine on a Thursday or Friday and then I found myself in a restaurant drinking about 30 pints of water, I didn't notice how odd that was which is ridiculous, my partner did. I was in a rush to drive home as I desperately needed a drink lol. The consultant said they thought it would be type 1 and was surprised when it wasn't. My granddad - he suddenly developed type 1, in his twenties I think.

Anyway time for me to shut up - all the help here has been v good and generous. Thx everyone.

 

[rebrascora]

That is exactly the way it hit me and it is unusual for Type 2 to exhibit like that, so I think there is a fair chance you are Type 1 or LADA. Having a correct diagnosis is important to get the correct treatment and the tests I mentioned should point to a correct diagnosis. Most mature adults are assumed Type 2 especially if they confess to a poor diet or are overweight.

I was also out for a meal and the thirst hit just as I was leaving the pub. I thought that maybe the steak and ale pie had been unusually salty. I spent all night and the following days with a raging thirst and started to realise that it must be diabetes. I cut back on sugar intake and drank plenty of water but after a fortnight of 4-5 pit stops a night I was dead on my feet and went to the doctors and a blood test showed my HbA1c was 112. I started on oral meds and very strict diet for Type 2 but a fortnight later my HbA1c went up instead of down and I was started on a basal/bolus system of insulin. It took another couple of months to see the consultant and get the testing done which confirmed Type 1.

 

[rebrascora]

With LADA the onset can be slower or the symptoms initially respond to Type 2 meds or a sudden change of diet to low carb can give the failing pancreas a chance to cope because it's work load is reduced, but sooner or later it runs out of Beta cells and insulin production is no longer enough to keep BG levels in check. There are probably quite a lot of Type 2s who have been misdiagnosed and are actually LADA because most GPs have never heard of LADA

 

[rebrascora]

Just to clarify, there is no specific test for Type 2. A mature adult with an HbA1c of 48 or more is usually assumed to be Type 2 particularly if they are overweight and that diagnosis tends to get stuck with them, particularly if they respond to oral meds and/or dietary changes. The GAD antibody and C-peptide tests are only done when Type 1 is suspected. If you haven't had those tests then in reality it is just an assumption that you are Type 2.
Many Type 2s end up on insulin because they don't modify their diet and their body becomes more and more resistant to the insulin they produce, so they need to inject large quantities extraneously because they are no longer sensitive to it. Most Type 1 diabetics will need a fraction of what a Type 2 diabetic uses, because their body is not producing enough, so they still have good sensitivity to it.

 

[Yeoc]

Sorry to take so much of people's time, it must take a lot out of people, especially running through so much of what has happened for you all. I have PTSD due to other things, my diabetes is minor compared to others and I just waffled a lot of rubbish. Good to learn some things here.

Rebrascora and everyone...thx. Loads of helpful stuff/thoughts.