LADA diagnosis

[bearlady]

I was diagnosed 18 months at the age of 60 with Type 1.5 LADA after being admitted to hospital with an extreme UTI. I was then told the great news that I had diabetes. This was very distressing and after loads of tests and seeing a diabetic nurse (who frightened the death out of me) and if I could have sewn my mouth up never to receive food again then I would have done so and consultant telling me it was not a big deal I was discharged into to the outside world. I really struggled to come to terms with the diagnosis and why was this happening to me. The information provided was very daunting and I muddled on as best I could from what had been provided to me. I was given a blood glucose monitor and told to take 14 units of Lantos in the morning and 4 units of Novarapid with my meals and told to test my sugars before each meal and at bedtime. I have carried on with this regime as I did see a consultant a few months later and also a dietician. The dietician basically just said try and follow a low carb diet and that was it. I am also lactose intolerant. Two months after my diagnosis my husband was then diagnosed with throat cancer. He received radiotherapy and was told he was doing well and then it reoccurred and at New Year in covid lockdown he was admitted into hospital for emergency life saving surgery to remove a large tumour that was covering his airways and resulted in the removal of his voicebox. As you can imagine the stress levels for us both was immense and then I lost my job of 45 years. I have struggled to come to terms with things and I was always a very fit we both were climbing mountains, walking, cycling and then reduced to doing nothing nothing as I am scared of having an hypo. I was therfore amazed last week when I eventually got to see my consultant that he said I was doing extremely well. My HbA1c was 6.5%, BMI 21-22, cholesterol fine but blood pressure slightly elevated. 1 day average 7.2, one week average 7.4 and 30 day average 7.6 BG readings. He said that he would only need to see me now every 12 months. He did however say that perhaps I should check my sugars 90 mins after food too just to see if if my BG levels spike due to certain foods. I have done this today after my breakfast consisting of around 50g carbs and my BG had spiked to 13.1 and keytones showed up and after checking this it was 0.1. After a further 2 hours and before lunch it had dropped to 7.2 and this has really worried me as what am I doing wrong? My daily intake of carbs is about 120 gm. I also eventually had my firstv eye test last month due to covid restrictions and was devastated to find out that it had caused damage to my eyes and I now have to go back in 3 months to be checked again. I was told that the damage could have been caused due to the condition not being diagnosed for a while or poor management of BG. Does this mean that as I have not been checking 90 mins after food have I been experiencing spikes without my knowledge and could this be causing poor BG management resulting in the damage to my eyes?

If anyone has any advice I would really welcome it as my eye sight is very important to me and I am scared stiff of losing it. Actually any advice on any of it would be advantageous as one day I would like to get back to exercise again under proper supervision. Even the hoovering seems to lower my BG!

 

[SB2015]

Welcome to the forum @bearlady from another late starter (53). It is indeed a shock and to add in your husband’s diagnosis you have had a lot to deal with.

Reducing Spikes
I am pleased that you were able to see your consultant and that you received such positive feedback. You are not alone in seeing spikes after a meal. I was surprised at the size of mine when I first started to use a sensor. The post meal spikes can often be reduced by :

Giving the bolus ahead of your meal.
This allows the insulin to get active in the blood stream to meet the glucose.
If you gradually move your bolus forward and carefully keep a watch on your levels afterwards you will find out what works for you. Some people find that they need different times at different times during the day

Reducing the number of carbs
We dropped our meals from about 50g to 30 g per meal, which works for me. Each of us is different and it is trial and improvement.

Identifying if certain foods are spikier for you
In general I find more sugary things are spicier for me. Breakfast cereals are out for me as well as porridge which was a disappointment.

I hope that makes sense. I also see that you mention fixed doses of quick acting insulin. As you are eating a fixed amount of carbs that does not need to be a problem. Most places offer a course for people with T1 on adjusting their own doses so that you can eat whatever you want (with appropriate timing of bolus)

Exercise

Aflyer diagnosis I was too scared to go swimming, but the education course also taught me how make adjustments to enable me to do this. It needs a combination of adjusting carbs , eating extras before/after exercise and/or adjusting insulin doses.

The course I did was called Dose Adjustment For Normal Eating (DAFNE). Do ask what they offer in your area. There are also online courses.

keep in touch and come back with any questions that arise.

 

[Inka]

Welcome @bearlady 🙂 What an incredibly stressful time you’ve had! You’ve done well to keep good control of your diabetes during that time.

For me, the key to reducing spikes is injecting my mealtime/fast insulin far enough in advance of eating. This time varies for different meals eg for breakfast I have to have my insulin 30 mins in advance but only 10-15 for my evening meal. The difference in my blood sugar with getting the injection timed right is significant. It has stopped my spikes.

I wonder if getting a couple of books about Type 1 would be helpful for you?


The first book is Think Like a Pancreas’ by Gary Scheiner.

The other book is Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas (ignore the title - it’s great for adults too)

I find them useful to dip into, both for practical advice and for reassurance.

 

[bearlady]

Welcome to the forum @bearlady from another late starter (53). It is indeed a shock and to add in your husband’s diagnosis you have had a lot to deal with.

Reducing Spikes
I am pleased that you were able to see your consultant and that you received such positive feedback. You are not alone in seeing spikes after a meal. I was surprised at the size of mine when I first started to use a sensor. The post meal spikes can often be reduced by :

Giving the bolus ahead of your meal.
This allows the insulin to get active in the blood stream to meet the glucose.
If you gradually move your bolus forward and carefully keep a watch on your levels afterwards you will find out what works for you. Some people find that they need different times at different times during the day

Reducing the number of carbs
We dropped our meals from about 50g to 30 g per meal, which works for me. Each of us is different and it is trial and improvement.

Identifying if certain foods are spikier for you
In general I find more sugary things are spicier for me. Breakfast cereals are out for me as well as porridge which was a disappointment.

I hope that makes sense. I also see that you mention fixed doses of quick acting insulin. As you are eating a fixed amount of carbs that does not need to be a problem. Most places offer a course for people with T1 on adjusting their own doses so that you can eat whatever you want (with appropriate timing of bolus)

Exercise

Aflyer diagnosis I was too scared to go swimming, but the education course also taught me how make adjustments to enable me to do this. It needs a combination of adjusting carbs , eating extras before/after exercise and/or adjusting insulin doses.

The course I did was called Dose Adjustment For Normal Eating (DAFNE). Do ask what they offer in your area. There are also online courses.

keep in touch and come back with any questions that arise.

Hi thanks for your very useful information.

I did have two poached eggs and a slice of rye bread for breakfast together with 30g of shreddies with about 50 ml of lactose milk. My fear is that sometimes I am minded that I don't eat enough as I have lost a lot of weight although I have put little back on now and feel better for it.

I was at the beginning having an omelette and a small bowl of cereal which would be either weetabix with a spoonful of lactose Greek yoghurt and a handful of berries or shreddies or scrambled eggs, mushrooms, grilled tomato and again a small bowl of cereal and 4 units of insulin. I have only just introduced porridge and rye bread to my diet for fibre and variety. Perhaps I will have to go back to that as that seemed to work. My ethos was that as long as I matched the insulin to carbs then it would be ok but realise that certain foods can affect people differently. It is so hard at times.

I was offered a course by my diabetic team at the hospital but unfortunately at the time my husband was having his treatment. I have purchased several books and just had Take Control of your Type 1 diabetes by Dr David Cavan which I found very useful in trying to understand it a little bit more.

I am sure once my husband's recovery improves and we get back to normal a bit then we can start to do some meal planning and get into a good routine. At the moment meal times are daunting as I don't know what I need to eat and he has trouble swallowing food and we either end up eating on our own and different meals and times as he prefers to eat when he fells like something and mainly soft food like pasta, rice etc which I avoid. I do have broccoli rice and cauliflower rice but it's not the same. He has always been the cook in the household and we loved to cook everything ourselves from scratch and never had processed or takeaways so at least that helps.

 

[bearlady]

Welcome @bearlady 🙂 What an incredibly stressful time you’ve had! You’ve done well to keep good control of your diabetes during that time.

For me, the key to reducing spikes is injecting my mealtime/fast insulin far enough in advance of eating. This time varies for different meals eg for breakfast I have to have my insulin 30 mins in advance but only 10-15 for my evening meal. The difference in my blood sugar with getting the injection timed right is significant. It has stopped my spikes.

I wonder if getting a couple of books about Type 1 would be helpful for you?


The first book is Think Like a Pancreas’ by Gary Scheiner.

The other book is Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas (ignore the title - it’s great for adults too)

I find them useful to dip into, both for practical advice and for reassurance.

It has been extremely stressful and there is only the two of us so we have had no help.

I have purchased a few books but the more I seem to read and get the information the more it seems to stress me out as i think should I be doing this and why haven't I done that. It is all confidence too and although I have been told I am doing really well since I had my eye test it has really put me on edge about everything and struggling with it all again.

Perhaps it is information overload at times but then I get negative and tend to dig a hole for myself and struggle.
I have taken on board about the timing of the insulin and will give it a go to see if it works.

Thanks for the time in replying it is good to know that there are people out there to help.

 

[Ljc]

Welcome to the forum.
Oh my what a rough time you have both had of it.
When things are more settled for you , ask again about the course its probably DAPHNE (dose adjustment for normal eating ) in the meantime their is an online course that is not eas but I found it helpful,
BERTI. I find the link for you and post it, unless someone else beats me to it.
It’s for T1 so just tick T1 ok.
I did it when I it was thought I was an insulin dependent T2 .

You will find their is hardly any good info on LADA out their , in fact I have found none of the GPs at our group practice have heard of it , luckily the practice diabetes nurse i see has. And researching online can be dire ‘ as some places on dr Google totally mix up the info for T1 and T2 , ie telling T1 to lose weight , when many need to get it back on after diagnosis an£ the insulin is doing its stuff. .

In the meantime make good use of our knowledge and ask all the questions you need to about diabetes.

 

[Ljc]

Here it is. I hope you find it helpful

Bertie Diabetes

 

[bearlady]

Here it is. I hope you find it helpful

Bertie Diabetes

Thank you so much for the link, I will have a look once I have had my tea, insulin and hopefully no spikes haha!!!
Yes it has been hard but we are hanging in there and coming out the other end and just take things a day at a time.

 

[trophywench]

I was going to suggest BERTIE online too in the absence of a face to face course - and guess who was VERY involved and instrumental to bringing the BERTIE course online to the masses? Only a Dr by the name of David Cavan!

 

[bearlady]

I was going to suggest BERTIE online too in the absence of a face to face course - and guess who was VERY involved and instrumental to bringing the BERTIE course online to the masses? Only a Dr by the name of David Cavan!

Thank you, I am definitely going to give it a go. I did download loads of recipes and information from the NHS website and there were little exercises you can do in learning to count your carbs etc but I have not been able to digest and really look at it all with everything going on with hubby but perhaps time to dust the folder off and get going.

BERTIE by Dr Cavan here I come. At least one thing diabetes is not going to take away and that is my sense of humour.

 

[trophywench]

Dr C was head honcho at Bournemouth Diabetes & Endocrine centre when they first rolled Bertie out - and a good many other hospitals went there to train how to deliver such courses to their diabetes patients. Coventry was one of the other hospitals - but the other hospitals all had to come up with different names, so Coventry's course is CARBS 4 1 whereas the George Eliot Hospital at Nuneaton, called theirs GERTIE!

 

[helli]

@bearlady welcome to the forum. Sounds as if you have done amazingly well considering what has been thrown at you and your partner recently.
I agree with others that one of the Type 1/LADA courses would be helpful. One of the great things about BERTIE (or DAFNE or whatever they call it in your area) is that it is focused on people with Type 1 and LADA. Whilst there are some fantastic things on the internet about managing diabetes, 9 out of 10 people with diabetes have type 2 so much of the advice (e.g. eating low carb) is aimed at managing type 2.
Yes, some people with Type 1 and LADA prefer to eat low carb but many of us find it is not necessary and prefer to focus on learning to dose insulin appropriately. Unfortunately, insulin dosing is not easy - as you have found, it is not just how much insulin to dose but when to dose it. Different foods are digested at different rates but the speed at which our insulin works is fixed. Ideally we want to match the peak of food digestion with the peak of the insulin strength - if we inject too early, we go low and, if we inject too late we go high.
And when calculating how much, we sometimes have to consider more than the carbs we are eating - are we ill, stressed or active? what are we going to do after eating? if the meal was low carb, what proteins have we eaten? ...
The other thing to remember is that we are trying to mimic the behaviour of a major organ that has evolved over thousands of years to do this and still gets spike and lows. So don't expect perfection - learn when you see a spike or trough. Some people learn and decide that food is not for them. I am too stubborn and refuse to give up food (unless it is something I am not that keen on and only eating it because my partners wants it) and I will persevere and work out the correct insulin dose and time.

As well as the courses, there is also this forum. Ask questions, express your frustrations, celebrate your successes. But remember we are all different and some of the well-meaning replies may come from people who may be different to you.
And be nice to yourself.

 

[everydayupsanddowns]

Thanks for the time in replying it is good to know that there are people out there to help.

Welcome to the forum @bearlady

Glad you have found the forum helpful already 🙂

Keep asking away with any questions and confusions that may arise over the coming weeks and months.

And well done on the amazing progress you have made so far 🙂

 

[bearlady]

Thanks for all your help.
Still struggling to work food out. I still seem to be getting it wrong. I didn't know that when you injected could make a difference too, I just used to innject just before eating my meals.
I have binned porridge altogether which was a shame as I did enjoy it as it looks like it takes me over 10 most times. I tried 10-20 mins before eating and it still took me up to 9.2. Then after testing just before my next meal it seems to go down into the 5's or lower if I have been active and had four units of insulin to counteract the carbs ratio.
Cereals (well a weetabix or about 30g shreddies still on the fence about those as they seem to have the same effect.
Tested on waking up and was 7.2. Had my 2 poached egg, tomato, mushrooms and a slice of ryebread this morning for breakfast injected 20 mins before eating with 4 units of insulin and then tested 2 hours after and was 9.1. 2 hours later tested again before lunch and was 5.4!!!!!! What is going on and could someone please put me at ease as I am verging on paranoia about it all at the moment and is this ok.
Trouble is I am putting in good numbers at times and then it spikes up at other times. Never really thought much about how my BG was doing 2 hours after meals until consultant said to check this after 90 mins-2 hours after eating.
I have started to do this and was shocked to see that it was raised up more than the 2 units that they recommend after your reading.
I have been told by the consultant that I am doing really well and I am going in the right direction but not really sure. Perhaps this low-carb is no good for me and I should go down the road of eating anything and doing the insulin to match the carbs and do it that way but I thought the low-crb would be more healthy and I would like to maintain my weight.

 

[Robin]

I have started to do this and was shocked to see that it was raised up more than the 2 units that they recommend after your reading.

Who is the 'they' that recommend no more than a 2 unit rise after eating?That's incredibly tight, my clinic doesn’t ask that of me, and I would say its unachievable for a Type 1 who actually wants to live a normal life. I think the NHS guidelines for 2 hours after a meal is not above 8.5 for a Type 1, and for those of us using a Libre, the target range is 3.9 to 10.0, with the aim of being within the target range 75% of the time.

 

[Inka]

@bearlady LADA is basically a slower-onset Type 1. My targets were under 12, then under 11, then preferable under 10 - you are doing fine. Even someone without diabetes goes up more than 2mmol!! Please do not compare yourself to diet-only Type 2s. You have a different condition.

You’ll notice that the Type 1 targets often give a ‘before next meal’ target rather than 2 hours. That’s normal and it’s because, especially for the recently diagnosed, you’d spend your time hypo and basically have no life if you aimed too low at 2 hours. Be kinder to yourself.

Insulin is the issue for Type 1s usually, not food. If you get a high sugar it’s more than likely the insulin not the food. I eat porridge but if I injected 10 mins before eating it my blood sugar would go up like yours. However, using my insulin appropriately, I do not go up that high. For breakfast I need to inject 30 mins in advance of eating. I also choose proper porridge not ground up cheap oats.

You’re setting yourself impossible standards then beating yourself up when you fail to meet them. That’s so sad. It’s often said that diabetes is a marathon not a sprint. You need to pace yourself. Go along slowly and steadily. Move your breakfast bolus 5 mins earlier and eat your porridge. Try that for 2 or 3 days then if it doesn’t work, move it 5 mins earlier. Everything takes time. Slow and steady 🙂

 

[bearlady]

Good advice, thank you. Think I am beating myself up a bit over it all. Before I didn't think about it twice with all the stress I was under just got on with it - if I had a 10-14 reading then it used to upset me, but thought what the heck I am doing my best (it was only one off perhaps when miscalculated the insulin) and obviously my last check up backed that up.

"They" is on-line searches "google" etc so should have taken notice of the forum as you are the ones living it!

Just want to stay well for my hubby's sake as he has been through so much (well we both have) and the recovery is having a few blips (side effects) of his treatment so one step forward and on step back, but need to give myself a break and get on with life and calm down!

 

[Inka]

Ah, Dr Google! That’s one ‘doctor’ to keep well away from @bearlady !

You genuinely are doing well. I meant that in all honesty 🙂

 

[rebrascora]

Totally agree with comments above. I am not sure if you are misunderstanding targets or your team are setting unrealistic targets but at this early stage, if you can keep your spikes below 10 most of the time you are doing really well. They will go above sometimes and that is OK. This is what I really like about the time in range targets for Libre sensor users. Keeping your readings between 3.9-10, 70% of the time is your target. Anything above that is over achieving which you can give yourself a pat on the back for and it can then become a mission for achieving personal best's beyond that, but that basic target is not too difficult to attain.
As regards porridge for breakfast, you could try having it with cream instead of milk to slow the carbs down a bit (fat tends to slow down the digestion of carbs)and premium jumbo oats rather than the likes of Ready Brek or similar small floury oats and bringing your bolus injection forward. I was needing to pre bolus over an hour with NovoRapid at breakfast to prevent spikes and it is about 45 mins with Fiasp which is one of the fastest acting insulins but just 15-20 mins at other times of day so do experiment with bringing it forward a bit more with porridge to see if you can reduce the spike to a better level.

 

[Ljc]

Hi. I like others would be interested to know who advised you to only have a 2.0 As you are on insulin a 2.0 post prandial rise , I hope it wasn’t anyone in here

Ok
A post prandial rise of no more than 2.0:mom/l is far, far to tight , in fact it’s even tighter than we recommend for a diet and exercise controlled T2.
Your rapid insulin is still active at 2 hrs and could be active for another 2 or 3 hrs , so you have to allow for it dropping even more if you test while it’s still active before your next meal.

It’s not only when you inject your rapid insulin pre meal ,it’s also if its fatty meal as well as the type of carbs your eating and if your Basal insulin is not right ,you will have problems no matter what you try with your rapid insulin . My Basal needs change several times a year, whereas my bolus ratio is pretty stable , fingers crossed lol.

T1s (which basically we are once we become insulin dependent) can and often do eat normally rather than low carb
In fact their is a course called DAFNE for T1s ,Dose adjustment for normal eating you might be able to get on one .

So please don’t panic , you are doing well.