Recently put on insulin - random high blood readings

[Ash94]

Hi, I've always read a lot of info on this site and finally signed up, I'll try putting only relevant information apologies if it's a long one, not sure if this is the right place to post this either.

I'm 24 and I was diagnosed with type 2 around 2014, my first year I controlled it really well through diet and mettformin, eventually I could not take Mettformin anymore as it was making me frequently ill, after that first year quite a lot had happened to me and I went off the rails to put it kindly, I also had moved house and was forced out of the specialist team I was with because I had moved from England to Wales (even though it was 5 minutes up the road ) I didn't really get on with the doctor I was assigned too and eventually stopped attending appointments, through that time up until now I had a few good months and a few bad, I'm not really proud of how stupid and naive I was being as I was living my life as if I didn't have the condition.

I started getting symptoms tied to having hyperglycemia like folliculitus, thrush etc so I decided to get a grip and booked an appointment during my week off from work, I had bloods and urine samples taken and was promptly phoned back as soon as I got home and was told my ketones are extremely high so much so that they were puzzled how I was feeling fine and had not been sick or had any symptoms of DKA, the way they reacted scared me quite a bit - and rightfully so, I started an strict no carb diet for the days following to try and sort things out, they contacted a diabetes specialist nurse and she had rang me asking if she could come and put me on insulin as my ketones were measuring 4.9 - but me being a stubborn idiot insisting that I felt fine ( I actually did) asked her to give me just a little more time to avoid insulin.

That night I drank 9 litres of water to try and flush them out of my system, I came home from work the next day and they were still around the 5 mark, I rang her and she came over and started me on insulin - she was hesitant about the doses at first because I had such good blood readings at that time because of the low carb diet I was on. The first week was fine, never going above 8 but having to eat something before going to sleep because they were creeping down to 4.

My ketones went from 5 to 0.2 in a day or two, the issue I have is that I'm eating almost the exact same things I was eating when I had my first week on insulin and this week has just been a nightmare, waking up with a 9 or 10 reading and only dropping to 8 mmol 2 hours later.

For example last week I had two weetabix and 4 units of novorapid and be absolutely fine maybe only raise by 1mmol two hours later, this week it can jump from 6 to 12, it just doesn't make any sense to me and it's really frustrating, I rang up the nurse thinking that my insulin might have gone off because it seemed quite "weak" she told me to dial it up to 5 for my novorapid and 9 for lantus so I did that yesterday and woke up with 10mmol and stayed there after my weetabix this morning, although I had my sandwiches 2 hours ago and my readings are just as they were last week.

Sorry for the long and messy post, do you have any advice or can see what might be happening? Thank you.

 

[Guzzler]

Hello and welcome. Just to clarify, when you started the insulin did you drop the strict low carb? I ask this because weetabix and bread are not strictly low carb.

Tagging @daisy1 for the fabulous info pack offered to all newcomers.

Edited to add,

Because of your age have you been tested for T1 at all?

 

[Ash94]

Hello and welcome. Just to clarify, when you started the insulin did you drop the strict low carb? I ask this because weetabix and bread are not strictly low carb.

Tagging @daisy1 for the fabulous info pack offered to all newcomers.

Edited to add,

Because of your age have you been tested for T1 at all?

I was told to have some carbs in my meals with my doses since my sugars were low already when starting insulin so started having some carbs again, my sugars were still pretty good even when I reintroduced them again, I'm eating the exact same foods up until tea time but still get the odd spike out of nowhere it seems. the highest amount of carbs I've had in a meal is 45g which the insulin covered with 4 units just fine but this week I had the same meal and it jumped from 6 to 11, this is what I'm not understanding.

I don't even know what type I am anymore, they diagnosed me as 2 but later on found some antibodies in my blood and thought I may be type 1 instead. I'm seeing my doctor again soon so will probably hear more info on it but for now the nurse was sent out just because of the ketone levels.

 

[daisy1]

@Ash94

Hello Ash94 and welcome to the Forum Here is the Basic Information we give to new members and I hope you will find it useful. Ask as many questions as you want and someone will be able to help.

BASIC INFORMATION FOR NEW MEMBERS

Diabetes is the general term to describe people who have blood that is sweeter than normal. A number of different types of diabetes exist.

A diagnosis of diabetes tends to be a big shock for most of us. It’s far from the end of the world though and on this forum you'll find well over 235,000 people who are demonstrating this.

On the forum we have found that with the number of new people being diagnosed with diabetes each day, sometimes the NHS is not being able to give all the advice it would perhaps like to deliver - particularly with regards to people with type 2 diabetes.

The role of carbohydrate

Carbohydrates are a factor in diabetes because they ultimately break down into sugar (glucose) within our blood. We then need enough insulin to either convert the blood sugar into energy for our body, or to store the blood sugar as body fat.

If the amount of carbohydrate we take in is more than our body’s own (or injected) insulin can cope with, then our blood sugar will rise.

The bad news

Research indicates that raised blood sugar levels over a period of years can lead to organ damage, commonly referred to as diabetic complications.

The good news

People on the forum here have shown that there is plenty of opportunity to keep blood sugar levels from going too high. It’s a daily task but it’s within our reach and it’s well worth the effort.

Controlling your carbs

The info below is primarily aimed at people with type 2 diabetes, however, it may also be of benefit for other types of diabetes as well.

There are two approaches to controlling your carbs:

• Reduce your carbohydrate intake
• Choose ‘better’ carbohydrates

Reduce your carbohydrates

A large number of people on this forum have chosen to reduce the amount of carbohydrates they eat as they have found this to be an effective way of improving (lowering) their blood sugar levels.

The carbohydrates which tend to have the most pronounced effect on blood sugar levels tend to be starchy carbohydrates such as rice, pasta, bread, potatoes and similar root vegetables, flour based products (pastry, cakes, biscuits, battered food etc) and certain fruits.

Choosing better carbohydrates

The low glycaemic index diet is often favoured by healthcare professionals but some people with diabetes find that low GI does not help their blood sugar enough and may wish to cut out these foods altogether.

Read more on carbohydrates and diabetes.

Over 145,000 people have taken part in the Low Carb Program - a 10 week structured education course that is helping people lose weight and reduce medication dependency by explaining the science behind carbs, insulin and GI.

Eating what works for you

Different people respond differently to different types of food. What works for one person may not work so well for another. The best way to see which foods are working for you is to test your blood sugar with a glucose meter.

To be able to see what effect a particular type of food or meal has on your blood sugar is to do a test before the meal and then test after the meal. A test 2 hours after the meal gives a good idea of how your body has reacted to the meal.

The blood sugar ranges recommended by NICE are as follows:

Blood glucose ranges for type 2 diabetes

• Before meals: 4 to 7 mmol/l
• 2 hours after meals: under 8.5 mmol/l

Blood glucose ranges for type 1 diabetes (adults)

• Before meals: 4 to 7 mmol/l
• 2 hours after meals: under 9 mmol/l

Blood glucose ranges for type 1 diabetes (children)

• Before meals: 4 to 8 mmol/l
• 2 hours after meals: under 10 mmol/l

However, those that are able to, may wish to keep blood sugar levels below the NICE after meal targets.

Access to blood glucose test strips

The NICE guidelines suggest that people newly diagnosed with type 2 diabetes should be offered:

• structured education to every person and/or their carer at and around the time of diagnosis, with annual reinforcement and review
• self-monitoring of plasma glucose to a person newly diagnosed with type 2 diabetes only as an integral part of his or her self-management education

Therefore both structured education and self-monitoring of blood glucose should be offered to people with type 2 diabetes. Read more on getting access to blood glucose testing supplies.

You may also be interested to read questions to ask at a diabetic clinic.

Note: This post has been edited from Sue/Ken's post to include up to date information.
Take part in Diabetes.co.uk digital education programs and improve your understanding. Most of these are free.

• Low Carb Program - it's made front-page news of the New Scientist and The Times. Developed with 20,000 people with type 2 diabetes; 96% of people who take part recommend it... find out why
  
  
• Hypo Program - improve your understanding of hypos. There's a version for people with diabetes, parents/guardians of children with type 1, children with type 1 diabetes, teachers and HCPs.
  

 

[Antje77]

later on found some antibodies in my blood

If you have antibodies you're type1.

 

[KK123]

If you have antibodies you're type1.

Hi Antje, I was told by my Consultant that that is not necessarily true. He said type 2's can also have antibodies and even people without diabetes can have them! No wonder we are all confused.

 

[Antje77]

Hi Antje, I was told by my Consultant that that is not necessarily true. He said type 2's can also have antibodies and even people without diabetes can have them! No wonder we are all confused.

I thought that testing for antibodies was the way to see if t1 or t2. How can you diagnose t1 if antibodies aren't proof?

 

[Daibell]

Hi Antje, I was told by my Consultant that that is not necessarily true. He said type 2's can also have antibodies and even people without diabetes can have them! No wonder we are all confused.

I hate to challenge your consultant as an amateur but many would disagree with him. It is possible but unlikely to have antibodies but not be T1. At age 24 unless you are really obese, T2 is unlikely and having very high ketones suggests T1 as well. T1 at age 24 may have a so-called honeymoon period when the pancreas still has some working beta cells. Most people who are T1/LADA will be taught to carb-count. That means adjusting the NovoRapid at each meal to suit the carbs in the meal. Many like myself were started with one unit of insulin to each 10gm of carb. Do ask the consultant or nurse. Sometimes they leave discussing it for a while or until a training course (!) to explain it. You may now want to slightly reduce the carbs if you don't really want them but be careful as the NovoRapid might need a tweak back down (or set according to carb-counting rules). As usual test frequently to avoid a hypo and discuss with the nurse as needed. Your Basal (Lantus) may also need a tweak so talk to the nurse or come back to the T1 forum for more advice on balancing it. I suspect things will settle down over the next few weeks particularly if you can carb-count and reduce the carbs a bit as well.

 

[Ash94]

I thought that testing for antibodies was the way to see if t1 or t2. How can you diagnose t1 if antibodies aren't proof?

I hate to challenge your consultant as an amateur but many would disagree with him. It is possible but unlikely to have antibodies but not be T1. At age 24 unless you are really obese, T2 is unlikely and having very high ketones suggests T1 as well. T1 at age 24 may have a so-called honeymoon period when the pancreas still has some working beta cells. Most people who are T1/LADA will be taught to carb-count. That means adjusting the NovoRapid at each meal to suit the carbs in the meal. Many like myself were started with one unit of insulin to each 10gm of carb. Do ask the consultant or nurse. Sometimes they leave discussing it for a while or until a training course (!) to explain it. You may now want to slightly reduce the carbs if you don't really want them but be careful as the NovoRapid might need a tweak back down (or set according to carb-counting rules). As usual test frequently to avoid a hypo and discuss with the nurse as needed. Your Basal (Lantus) may also need a tweak so talk to the nurse or come back to the T1 forum for more advice on balancing it. I suspect things will settle down over the next few weeks particularly if you can carb-count and reduce the carbs a bit as well.

Thanks for all your responses, I do recall my doctor was not in a hurry to put me on insulin when the results of antibodies came back (although this was a while ago), maybe because my ketones/sugars were still low? I did hear the nurse talk about a honeymoon period but she didn't really explain it, it's just a lot of info to take in at once especially when starting on insulin so I forgot to ask a lot of questions that I should have. I know that ever since they found antibodies all the doctors and nurses have been quite confused by my diagnosis.

Hopefully will know more on next appointment.

 

[KK123]

I hate to challenge your consultant as an amateur but many would disagree with him. It is possible but unlikely to have antibodies but not be T1. At age 24 unless you are really obese, T2 is unlikely and having very high ketones suggests T1 as well. T1 at age 24 may have a so-called honeymoon period when the pancreas still has some working beta cells. Most people who are T1/LADA will be taught to carb-count. That means adjusting the NovoRapid at each meal to suit the carbs in the meal. Many like myself were started with one unit of insulin to each 10gm of carb. Do ask the consultant or nurse. Sometimes they leave discussing it for a while or until a training course (!) to explain it. You may now want to slightly reduce the carbs if you don't really want them but be careful as the NovoRapid might need a tweak back down (or set according to carb-counting rules). As usual test frequently to avoid a hypo and discuss with the nurse as needed. Your Basal (Lantus) may also need a tweak so talk to the nurse or come back to the T1 forum for more advice on balancing it. I suspect things will settle down over the next few weeks particularly if you can carb-count and reduce the carbs a bit as well.

Hi Daibell, thank you for that information, when I next see him I will pin him down. He definitely said that a type 2 could still have antibodies, my results came back GAD positive and I said 'so I'm definitely type 1 then' and he said 'probably but type 2s can also have antibodies.

 

[Daibell]

Hi Daibell, thank you for that information, when I next see him I will pin him down. He definitely said that a type 2 could still have antibodies, my results came back GAD positive and I said 'so I'm definitely type 1 then' and he said 'probably but type 2s can also have antibodies.

What you have come across is the grand confusion between diabetes types and the changes to definitions a few months back has made it even worse. It is a very complex condition with many genes involved as well as various antibodies, viruses and so on. I'm still listed as T2 in my notes although obviously (to me) that I'm a LADA. I had a grand argument with my diabetes GP who had just come off training and had not been told that T1 can come on after childhood. In simple terms if you have low insulin output due to managed beta cells then you will need insulin. may be slim due to fat burning and to me that means 'T1' (aka LADA if older and slower onset). If you have insulin resistance in the muscle cells and more likely to have excess weight then you may be producing too much insulin as the body can't use it but the pancreas just keeps trying. In this case which I call 'T2' the solution is weight reduction thru Low-carb and some medication to help. The c-peptide test which many T1s are given at diagnosis can help show what level of insulin you are producing. BTW there are several other very different diabetes types such as MODY which have their own characteristics.

 

[KK123]

What you have come across is the grand confusion between diabetes types and the changes to definitions a few months back has made it even worse. It is a very complex condition with many genes involved as well as various antibodies, viruses and so on. I'm still listed as T2 in my notes although obviously (to me) that I'm a LADA. I had a grand argument with my diabetes GP who had just come off training and had not been told that T1 can come on after childhood. In simple terms if you have low insulin output due to managed beta cells then you will need insulin. may be slim due to fat burning and to me that means 'T1' (aka LADA if older and slower onset). If you have insulin resistance in the muscle cells and more likely to have excess weight then you may be producing too much insulin as the body can't use it but the pancreas just keeps trying. In this case which I call 'T2' the solution is weight reduction thru Low-carb and some medication to help. The c-peptide test which many T1s are given at diagnosis can help show what level of insulin you are producing. BTW there are several other very different diabetes types such as MODY which have their own characteristics.

Thank you. I actually did have a C peptide test and was producing low levels of insulin, I am slim and did have suspected DKA on diagnosis (high ketones, hi glucose readings) so he has put all those facts together and called me type 1. But I am 57 so it probably is lada?

 

[Bluey1]

Hi Ash94, Have you found a good dr you like and is on top of D. If not I would find one ASAP.

My specialist said there are more than 1 sort of anti bodies. Diabetes is still evolving. We had Juvenile Diabetes and you got that before your mid teens. Then it became Type 1 as a number of us ruined that and got it well after our teens, now there is LADA and a host of other tags. To keep it simple there are those that have insulin and it has been modified or the body can't handle it. The other sort is no insulin or very very little or it's slowly decreasing. Gestational is a temporary manifestation while pregnant normally of the little to no insulin group. Theories abound on how you get diabetes and again it appears there is not one size fits all. As you can see from the posts above the GAD antibodies test is not an accurate indicator.

I can't comment on the Type 2 grouping as I know little about it, however with the type 1 group of which you appear to be fitting into, there are so many variables. What we eat is the biggest impact, but mood mainly stress, exercise and even the weather can influence BGL. You can have 3 diabetics of the T1 grouping and excluding sugar etc one can eat something e.g. an apple and it has no effect and another it sends there BGL sky high and the last one sometimes it does sometimes doesn't impact them. Over time things change as well.

That is why it's important to have a really good Dr etc and work out what works for you and what doesn't. It's also OK to feel frustrated and depressed, just don't let D drag you down and keep you there.

 

[Ash94]

Hi Ash94, Have you found a good dr you like and is on top of D. If not I would find one ASAP.

My specialist said there are more than 1 sort of anti bodies. Diabetes is still evolving. We had Juvenile Diabetes and you got that before your mid teens. Then it became Type 1 as a number of us ruined that and got it well after our teens, now there is LADA and a host of other tags. To keep it simple there are those that have insulin and it has been modified or the body can't handle it. The other sort is no insulin or very very little or it's slowly decreasing. Gestational is a temporary manifestation while pregnant normally of the little to no insulin group. Theories abound on how you get diabetes and again it appears there is not one size fits all. As you can see from the posts above the GAD antibodies test is not an accurate indicator.

I can't comment on the Type 2 grouping as I know little about it, however with the type 1 group of which you appear to be fitting into, there are so many variables. What we eat is the biggest impact, but mood mainly stress, exercise and even the weather can influence BGL. You can have 3 diabetics of the T1 grouping and excluding sugar etc one can eat something e.g. an apple and it has no effect and another it sends there BGL sky high and the last one sometimes it does sometimes doesn't impact them. Over time things change as well.

That is why it's important to have a really good Dr etc and work out what works for you and what doesn't. It's also OK to feel frustrated and depressed, just don't let D drag you down and keep you there.

I'm with a much better team now, the doctors I was at didn't really have anyone skilled in diabetes so they referred me to a specialist team in a different town, they're very supportive.

one thing I read from you there is about apples having no effect, my friend at work is type 1 and she said to never eat apples as they will spike me, I did it to test and my levels did not flinch at all 2 hours after eating a medium sized apple - in fact they actually came down lower. Such a confusing and complex disease

 

[ArsenalCath]

Hi Ash94, Have you found a good dr you like and is on top of D. If not I would find one ASAP.

My specialist said there are more than 1 sort of anti bodies. Diabetes is still evolving. We had Juvenile Diabetes and you got that before your mid teens. Then it became Type 1 as a number of us ruined that and got it well after our teens, now there is LADA and a host of other tags. To keep it simple there are those that have insulin and it has been modified or the body can't handle it. The other sort is no insulin or very very little or it's slowly decreasing. Gestational is a temporary manifestation while pregnant normally of the little to no insulin group. Theories abound on how you get diabetes and again it appears there is not one size fits all. As you can see from the posts above the GAD antibodies test is not an accurate indicator.

I can't comment on the Type 2 grouping as I know little about it, however with the type 1 group of which you appear to be fitting into, there are so many variables. What we eat is the biggest impact, but mood mainly stress, exercise and even the weather can influence BGL. You can have 3 diabetics of the T1 grouping and excluding sugar etc one can eat something e.g. an apple and it has no effect and another it sends there BGL sky high and the last one sometimes it does sometimes doesn't impact them. Over time things change as well.

That is why it's important to have a really good Dr etc and work out what works for you and what doesn't. It's also OK to feel frustrated and depressed, just don't let D drag you down and keep you there.

I have just been diagnosed as type 1 after couple years of unsuccessfully being treated as type 2. Went to see diabetic endocrinologist who said if my new doctor hadn’t put me on insulin I would have died. The weight literally fell off me until I was 8st 10lbs which at 5’6” I was skin and bone. So will thank him profusely when I see him. Especially as I have taken on the guardianship of my three year old very active grandson. I need all the energy I can get. I had a stroke in May 2015 and blamed that for all my ailments. But was told I would make a full recovery. However all my symptoms were due to astronomically high bg levels.