Change of diagnosis

[Joanneclairebarnes]

Good to hear you have Libre but do push for more help and explanations for what their thinking is re medication. I believe that Metformin can also inhibit the liver from dumping glucose into the blood stream so that may be why they have prescribed it but that may be potentially dangerous if you are also having hypos, which may be why they don't want you to take insulin at lunchtime, although as I understand it, Metformin takes time to build up in the system and is not specifically active after each dose, but builds up to a level of effectiveness throughout the day.

On my DAFNE course they actually said that they consider a hypo 3.5 or below rather than the typical 4 because non diabetic people can naturally drop below 4 on occasion, so whilst they shouldn't be too concerned there is much more focus these days on preventing "hypos". I would have thought they should maybe look at changing your lunchtime insulin:carb ratio to prevent them rather than suggesting you don't use insulin at lunchtime.
Have you been taught to alter your insulin doses to match your meals? Have you done a DAFNE or equivalent course?

Another option would be to have a low carb meal at lunchtime and not use insulin. I am Type 1 and I follow a very low carb higher fat way of eating and there is nothing wrong with that if you can get your head around it. In fact I often don't have any lunch at all and just have breakfast and dinner. There is no harm in cutting carbs and it can be an enjoyable way to eat once you know how. I certainly use it as a means of helping to control my diabetes and use less insulin, so don't be offended by the suggestions made above. I am sure they were made in good faith. Yes, as Type 1s we are encouraged to eat "normally" but there is no harm in experimenting with low carb. It is not harmful, provided you reduce your insulin dose accordingly.

Thanks this is all very interesting. I am definitely going to ask why metformin.

I have done dafne but I just feel like I'm really struggling with dosage adjustment as I take such small amounts already. I think I lower carb lunch maybe something to experiment with. Also with a young baby I do find it hard to prepare lunch, count carbs accurately, work out ratios etc.. I think I am also struggling mentally with getting my head round having to do this all the time. I feel like im starting again after pregnancy and just don't know where to start.

Thank you so much for your time and advice. I'm not offended by the suggestions above, it was more the way it was put across. Just feeling a bit sensitive at the moment!

 

[rebrascora]

It is to be expected that you are feeling sensitive, especially when your levels are fluctuating and no doubt you will be tired with having a young baby and that in itself will make everything more difficult. In the longer term with diabetes it is common to have spells of "burn out" where the day after day grind of it all gets too much. The forum is here to support people through this and re-motivate them as well as provide tips and tricks to manage levels better, or just to listen when you want to have a rant about the unfairness of it all, because we get it!

Maybe try something like a boiled egg or tuna salad or an omelette with whatever fillings you fancy again served with salad and lots of creamy coleslaw or full fat mayonnaise for lunch, but no bread or perhaps a small slice of low carb bread like Livelife or Burgen if you really can't manage without. The key with low carb eating is to increase the fat content of your meals as that provides slow release energy without spiking your levels like carbs do. It also keeps you feeling full for longer because it takes more time to digest. This is why I rarely have lunch these days, because I just don't feel hungry anymore. It amazes me how little food I actually need now, whereas pre diagnosis I used to eat like a horse... usually carbs, carbs and more carbs. I like not constantly thinking about food and having to figure out what I am having for lunch and how much insulin I need for it. I still need bolus insulin on a morning because I get Dawn Phenomenon and depending what I eat, a bit on an evening.

Anyway, let us know how you get on both experimenting with lunch and also getting some better answers/support from the consultant and his team.

 

[Ljc]

Another thing about Metformin is is it makes you more sensitive to insulin be it home brew or injected. Some folks who have T1 are put on it because they have insulin resistance, which in my non medical opinion you don’t seem have.
As I am sure you already know, Those of us with T2 often make shedloads of our own but because we are resistant to our home brew our beta cells have to work doubly hard . Me, I like to be different lol , My ratios are quite low.

Metfartin as it is not so fondly called here was originally designed to aid weight loss, then they started to find it had other benefits. It is now the first med of choice for t2s .

 

[SB2015]

Welcome to the forum @Joanneclairebarnes

Having read through this thread it sounds to me like you are simply a T1 who needs small doses of insulin.

You need what you need and certainly a half unit pen makes this a lot easier. With your sensitivity I would be pushing the consultant to consider you for a pump. You can then change a dose by as little as 0.1 units. It certainly made my life easier.

Like you I picked up from DAFNE that I could eat whatever I wanted and all I needed to do was match the right amount of insulin. The libre showed me the spikes I was getting after meals and also helped me to time my bolus so that the insulin was working when the glucose hit. I then reduced my portion sizes to reduce my spikes.

With a half unit pen or pump you will have the tools to make adjustments you need .
Keep pushing for answers and keep in touch. We are all entitled to a whinge.

 

[Inka]

I agree with the above - the timing of your bolus is very important. It’s what stops any spike. People can also sometimes reduce the amount of insulin they take as it’s being used better. I found that with my breakfast bolus - having it 30 mins in advance stopped the spike and meant I was able to reduce my dose by around 20%.

Carbs shouldn’t be demonised and I don’t think skipping meals is ideal either. Nor do I believe extremely low carbs diets are best for Type 1s. So I understand why you were upset @Joanneclairebarnes I felt the same when I read similar statements elsewhere. Please be assured that most people with Type 1 eat reasonable amounts of carbs.

 

[Drummer]

I am not type 2. I was diagnosed at 19 with no risk factors and was advised to eat carbs with insulin.

That was my point - if you WERE a type two.
You are going high eating high carb foods - that seems to be the problem, you are using the insulin to fight the diet, so I was proposing that the diet is the problem. Stop the ping pong of carbs/high/insulin/low/carbs/high/insulin and let things settle down into a calmer situation of low carb/no need for extra insulin/no hypo.

 

[stephknits]

Hi, nothing much to add, just wanted to say hello and agree with @SB2015 . Lots of type 1s on here that need very little insulin. There was an interesting thread where people posted their Total Daily Dose and they varied significantly, we need what we need. What it did show, was that type 2s insulin required a lot more than the type 1s, so quite the opposite.

 

[Northerner]

Hi
I'm Jo and was diagnosed type 1 13 years ago, aged 19.
Honestly I'm pretty fed up and need some advice support so figured this would be a good place to look for it!
I have always had v low insulin requirements and in the past asked my doctor if I could be type 2, if I could have the antibodies test and was refused.
I had my first baby nearly a year ago. During and after pregnancy my insulin requirements remained very low. I had never seem a consultant before pregnancy and during pregnancy the consultant I did see questioned whether I could have MODY. I have had screening test which have been negative. I have also had a negative type one antibodies test and my c peptide test showed a reasonable insulin production.. Unheard of after being diabetic for 13 years.

I have been put on metformin 4 x 50mg a day (I've been told more than this won't make much differencr) I've been advised to stop insulin as I have a lot of hypos even with between 2 - 5 units. If I don't take insulin my blood sugars spike to around 20 after meals and take quite a few hours to settle.

I feel like whatever I do doesn't work I've basically been told by my consultant that I need to go with it and will have a follow up on 6 months. My husband says I need to call back but I just feel like I will be given the same advice.. And because they don't know what's going on they don't know how to best treat me. any one hve any ideas of someone else I could talk to? Or any one had a similar experience?

Thanks

Hi Joanne, welcome to the forum 🙂 You've already had some splendid advice which I hope you have found helpful and reassuring 🙂 I'm with the people who think you are just a Type 1 who needs only small amounts of insulin. I'm also in this category, although with some slightly different characteristics. I was diagnosed Type 1 12 years ago (aged 49, so much older than you) and put on lantus and novorapid, but after 4 years I found that even though I reduced my lantus as far as I could (I was down to 2 units and only had a 2 unit pen) I was still waking in the low 4s and having occasional night hypos, so I stopped using it - I have not needed it since! My novorapid use has also dipped significantly from the time of my diagnosis, but it can vary quite a lot, from 5 units a day up to 20 units, depending on various factors, particularly exercise levels. Last year they finally gave me a C-peptide test and discovered that I, like you, was producing a 'reasonable' amount of insulin. There was some debate about whether I was actually Type 1, MODY or Type 2, but it seems I don't fit the criteria for any of the MODY variations and I'm definitely not Type 2 as I have never had any of the features of that. So, I am Type Weird, and can't be placed in any category - I have remained as Type 1 for the purposes of my treatment, since that is what I most resemble 🙂

As it happens, I have a friend (former Forum member from many years ago) and she has had a similar experience - diagnosed Type 1, eventually needing less and less insulin. She's in her early 40s now, about 10 years after her diagnosis and no longer needs insulin - instead she occasionally has a half-tablet of glicizide - I may have missed it, has this been suggested to you? I agree that there is no need for metformin. My friend does a lot of sport - running, triathlons etc. plus she eats quite a low carb diet, which no doubt makes her very sensitive to the insulin she is still producing. I am the same, my requirements dip right back when I am able to get frequent exercise (can't do as much as used to!).

So, people like us do exist and it should not be assumed by healthcare professionals that if you don't match one type then you must be the other - diabetes is far from being that simple and its manifestations can vary considerably! 🙂 I've encountered at least half a dozen others here on the forum over the past 10 years whose experiences have been similar. The most important thing at the end of the day is that your diagnosis provides you with the treatment that is appropriate for you to be able to manage your blood sugar levels well 🙂 Don't let them pigeon-hole you into some crude category, they need to treat you as an individual, not as a category 🙂

 

[Joanneclairebarnes]

It is to be expected that you are feeling sensitive, especially when your levels are fluctuating and no doubt you will be tired with having a young baby and that in itself will make everything more difficult. In the longer term with diabetes it is common to have spells of "burn out" where the day after day grind of it all gets too much. The forum is here to support people through this and re-motivate them as well as provide tips and tricks to manage levels better, or just to listen when you want to have a rant about the unfairness of it all, because we get it!

Maybe try something like a boiled egg or tuna salad or an omelette with whatever fillings you fancy again served with salad and lots of creamy coleslaw or full fat mayonnaise for lunch, but no bread or perhaps a small slice of low carb bread like Livelife or Burgen if you really can't manage without. The key with low carb eating is to increase the fat content of your meals as that provides slow release energy without spiking your levels like carbs do. It also keeps you feeling full for longer because it takes more time to digest. This is why I rarely have lunch these days, because I just don't feel hungry anymore. It amazes me how little food I actually need now, whereas pre diagnosis I used to eat like a horse... usually carbs, carbs and more carbs. I like not constantly thinking about food and having to figure out what I am having for lunch and how much insulin I need for it. I still need bolus insulin on a morning because I get Dawn Phenomenon and depending what I eat, a bit on an evening.

Anyway, let us know how you get on both experimenting with lunch and also getting some better answers/support from the consultant and his team.

Thanks for the ideas! I do find it hard thinking of lunch ideas with no carbs and didn't know increasing fats provides slow release.

 

[Joanneclairebarnes]

Welcome to the forum @Joanneclairebarnes

Having read through this thread it sounds to me like you are simply a T1 who needs small doses of insulin.

You need what you need and certainly a half unit pen makes this a lot easier. With your sensitivity I would be pushing the consultant to consider you for a pump. You can then change a dose by as little as 0.1 units. It certainly made my life easier.

Like you I picked up from DAFNE that I could eat whatever I wanted and all I needed to do was match the right amount of insulin. The libre showed me the spikes I was getting after meals and also helped me to time my bolus so that the insulin was working when the glucose hit. I then reduced my portion sizes to reduce my spikes.

With a half unit pen or pump you will have the tools to make adjustments you need .
Keep pushing for answers and keep in touch. We are all entitled to a whinge.

Thank you. My problem is I am all ready for a whinge and then never do it at appointments doesn't help with them being over the phone. I'm going to have my husband with me for support next time!!

 

[Joanneclairebarnes]

Hi Joanne, welcome to the forum 🙂 You've already had some splendid advice which I hope you have found helpful and reassuring 🙂 I'm with the people who think you are just a Type 1 who needs only small amounts of insulin. I'm also in this category, although with some slightly different characteristics. I was diagnosed Type 1 12 years ago (aged 49, so much older than you) and put on lantus and novorapid, but after 4 years I found that even though I reduced my lantus as far as I could (I was down to 2 units and only had a 2 unit pen) I was still waking in the low 4s and having occasional night hypos, so I stopped using it - I have not needed it since! My novorapid use has also dipped significantly from the time of my diagnosis, but it can vary quite a lot, from 5 units a day up to 20 units, depending on various factors, particularly exercise levels. Last year they finally gave me a C-peptide test and discovered that I, like you, was producing a 'reasonable' amount of insulin. There was some debate about whether I was actually Type 1, MODY or Type 2, but it seems I don't fit the criteria for any of the MODY variations and I'm definitely not Type 2 as I have never had any of the features of that. So, I am Type Weird, and can't be placed in any category - I have remained as Type 1 for the purposes of my treatment, since that is what I most resemble 🙂

As it happens, I have a friend (former Forum member from many years ago) and she has had a similar experience - diagnosed Type 1, eventually needing less and less insulin. She's in her early 40s now, about 10 years after her diagnosis and no longer needs insulin - instead she occasionally has a half-tablet of glicizide - I may have missed it, has this been suggested to you? I agree that there is no need for metformin. My friend does a lot of sport - running, triathlons etc. plus she eats quite a low carb diet, which no doubt makes her very sensitive to the insulin she is still producing. I am the same, my requirements dip right back when I am able to get frequent exercise (can't do as much as used to!).

So, people like us do exist and it should not be assumed by healthcare professionals that if you don't match one type then you must be the other - diabetes is far from being that simple and its manifestations can vary considerably! 🙂 I've encountered at least half a dozen others here on the forum over the past 10 years whose experiences have been similar. The most important thing at the end of the day is that your diagnosis provides you with the treatment that is appropriate for you to be able to manage your blood sugar levels well 🙂 Don't let them pigeon-hole you into some crude category, they need to treat you as an individual, not as a category 🙂

Thank you for taking the time to reply. I have never heard of glicizide!

 

[Northerner]

Thank you for taking the time to reply. I have never heard of glicizide!

Gliclizide is a pill that stimulates the pancreas to produce more insulin, so rather than injecting it, the pill prompts your pancreas to make more of its own. It's often prescribed to people who have a slow-onset version of Type 1 called LADA (Latent Autoimmune Diabetes in Adulthood) whereby the person is still producing insulin, but insufficient for requirements. Some argue that it simply speeds the decline of the body's own ability to produce insulin in such people, although I'm not sure if there is scientific evidence for that. As I said, my friend only needs the occasional tablet, or even half tablet if her levels become elevated for whatever reason 🙂

 

[NotWorriedAtAll]

Thank you for your reply but I do find this quite upsetting. I have done courses on dosage adjustment and have been told to eat carbs. I am not type 2. I simple said I wondered if it could be the case due to low insulin requirements. I haven't been advised to follow a type 2 or low carb diet but I do try and eat similar foods each day.

Oh sorry. It didn't occur to me that it might upset you and I should have been more considerate. Please accept my whole hearted apologies. I wouldn't add to your stress levels for the world. It just worried me because I was considering the situation of you being type 2 as a possibility as it had been raised. But I should have been more careful how I couched my post.

 

[Joanneclairebarnes]

Oh sorry. It didn't occur to me that it might upset you and I should have been more considerate. Please accept my whole hearted apologies. I wouldn't add to your stress levels for the world. It just worried me because I was considering the situation of you being type 2 as a possibility as it had been raised. But I should have been more careful how I couched my post.

Thank you so much for saying. I probably didn't work my original post very well then took this the wrong way.

 

[everydayupsanddowns]

I think it would be hugely beneficial for you to consider pump therapy @Joanneclairebarnes - if it appeals to you. You can have all your ratios already preconfigured in the pump and just tell it approximately how many carbs you are expecting and it will deliver precise doses down to 10ths or 100ths of a unit. No more rounding up or down needed.

Plus a basal profile (or several for different types of day) which more exactly matches the rising and falling of your insulin needs throughout the 24 hour period. 🙂

 

[Joanneclairebarnes]

Thank you
This definitely appeals to me I had just never considered it before as I didn't realise you could administer such small amounts!
I will definitely be speaking to my consultant.

 

[Joanneclairebarnes]

So today i haven't taken metformin and I had a low carb lunch (salad, egg, Coleslaw) my blood glucose was 6 all morning and prior to lunch so did take 1 unit of insulin as lunch contained a lot of veg and 6 is higher than I'd like before lunch, though not awful! My glucose spiked to 10 after eating but came down to 4 by 430, so sacked to prevent hypo. I feel like my lantus is reasonable for my blood glucose to have remained at 6 for most of the morning, but perhaps I should have only had a half unit novorapid with lunch. Or perhaps I'd be better to increase lantus 1 unit and not take novorapid at all with this type of lunch?

 

[Joanneclairebarnes]

Also wanted to ask, does anyone know if there is a lantus pen which can administer half units?

 

[rebrascora]

My half unit pens are Novopen Echos and take cartridges of whichever insulin you use, so rather than having disposable insulin pens, the pens are reusable and you just change the insulin cartridge when it is empty. It also tells you what your last dose was and roughly when so if you have a "Did I or didn't I inject" moment you can look at the pen and see, Better for the environment, cheaper I would imagine in the long run as the insulin cartridges must be cheaper than disposable pens and better for the user.... what's not to love! I don't know if you can get Lantus cartridges for them as I have Levemir as my basal insulin and so both my insulins are made my Novo Nordisk. I have a blue pen for Levemir and a red pen for NovoRapid as oppose the orange and green the disposable pens come in.

That seems like quite a big rise in BG for what should have been such a low carb meal. Did you have lots of tomatoes in the salad or could it be something you drank or the protein from the eggs being converted? Protein usually takes 2 hours to start releasing glucose, so I usually bolus after a low carb meal containing protein. That said the fact that you spiked up to 10 suggests that you perhaps didn't bolus quite soon enough in advance of eating. How long after eating did your BG hit 10?

I would agree that your Lantus is probably right if you were a steady-ish 6 all morning, but Lantus does have a peak of activity so it may be responsible for the dip in the afternoon .... when do you take it? Or is it possible that your activity levels are causing this dip in the late afternoon?

 

[Robin]

Lantus insulin cartridges won’t fit in the Novopen Echo, but there is a pen with half units that will take a lantus cartridges, because I had one.(Just looked, it was a Sanofi Junior star)