Type 1 at 41!?

[PenguinV40]

Greetings all; this is my first post. My name's Paul and I've was diagnosed just before the end of last year with Type 1.

Whilst I had thought that there was quite a high chance of my having brought Type 2 down on myself (middle aged, overweight et cetera) I was extremely shocked to be told that that it was actually Type 1. I wonder if it might by MODY however and I'd be interested in other peoples' views on that as I explain the circumstances.

I'd been feeling pretty rough since early November 2016 but I had assumed this to be down to stress at work (it had been a difficult time during those couple of months, no so much now). In any case I went to my GP after Christmas and said that I thought I might be diabetic based on the tiredness/thirst/toilet combination. A blood glucose was taken and came back as 18.2 and then the ketone test showed 0.8. On that basis and the fact that I had lost 2 stone since the start of November without trying to, my GP was not happy to diagnose me as Type 2 and packed me off to the Diabetes Centre of my general hospital, and they diagnosed me as Type 1 and set me up with all the various kit (insulin pens, meters and so forth).

I cannot praise the diabetes nurses, doctors and dietitians highly enough. Within three weeks I had regained control of the glucose and was counting my own food with the help of the Aviva Expert metre that they had given me.

I assumed I'd have LADA to get Type 1 symptoms at the age of 41, but a LADA test came back negative (although I was told that negative was essentially inconclusive rather than a definite no). I also don't need that much insulin. I definitely do need insulin and I am definitely not in any way resistant (which presumably rules out Type 2) but I'm only needing around 1 unit/14g carb on the bolus and 15 units per day on the basal, despite my current weight of 140kg. (I'm overweight but not hugely fat as I'm also quite tall). Does that point to MODY instead? I checked the family history and we have a lot of Type 2 on my father's side but only a single instance of Type 1 - a distant relative of my mother.

As to how I am finding all this; it was certainly a little overwhelming to begin with but I believe that I am now on a more even keel - I have reached and maintained control, only hypo'd three times (and on every occasion saw them coming so tested specifically for them) and I am now back at work and getting on with things. I do miss not being able to eat without advance planning though.

Cheers

Paul

 

[Clivethedrive]

Hi penguinv40, I'm t2 but will reccomend a very good source of info : Dr Richard Bernstein's Diabetes Solution 4 th Ed' he himself has been a t1 for over 50 years and has helped so many different types of diabetics,
I will ask @daisy1 for the info for new posters,have a good read and come back with your q's ,clive

 

[Winnie53]

Tagging @Kristin251 who has LADA for you Paul.

 

[ME_Valentijn]

assumed I'd have LADA to get Type 1 symptoms at the age of 41, but a LADA test came back negative (although I was told that negative was essentially inconclusive rather than a definite no).

LADA is just a slow onset of Type 1. But in both cases, the cause is autoimmune, and autoimmune diseases aren't known for their consistency. What did they test for LADA? For both Type 1 and LADA there would usually be auto-antibodies detected, and the main difference would be that in LADA there's still a decent amount of insulin being produced at first. If C-peptide tested low, that would be a good indication of Type 1.

I also don't need that much insulin.

This can be normal after diagnosis, for a while. But it might change as more insulin-producing cells are destroyed. With LADA, often no insulin is needed at all for quite a while. I think my fiance had about 6 months where he didn't need to inject, with his LADA onset.

Does that point to MODY instead? I checked the family history and we have a lot of Type 2 on my father's side but only a single instance of Type 1 - a distant relative of my mother.

Possibly. Some types of MODY can produce significant amounts of ketones, and may need insulin for management. But a lack of Type 1s in the family doesn't rule out Type 1 ... again, my fiance had none at all in his family. MODY onset will typically come when young, since there's a lifelong genetic defect in producing insulin or dealing with glucose. Mitochondrial genetic disorders causing diabetes can hit when older, but then there will often be some other health issues on the maternal side of the family, such as cases of deafness (MIDD) , muscle myopathy (MELAS), vision problems (LHON), etc.

 

[Freema]

welcome here PenguinV40

 

[ickihun]

@Clivethedrive @daisy1 's tag only works without space between @ and name. I guess just a typing error. Hope you dont mind retagging.

 

[daisy1]

@PenguinV40

Hello 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 need to and someone will be able to help.


BASIC INFORMATION FOR NEWLY DIAGNOSED DIABETICS

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 147,000 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 free 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. They're all 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.

 

[Kristin251]

Hi Paul and welcome!

I became LADA at age 50. Slowly it was harder and harder to control bs with diet and exercise. Then the rapid weight loss despite eating tons of food.

After becoming extremely ill and finally getting diagnosed with a c peptide of .6 and GAD over 250 I started insulin and gained my lost 25#s which I couldn't afford to lose. 2 months later I had regained my weight but it stopped right there. However I was told to eat 20 carbs per MEAL and that was over 3x what I ate in a day. I couldn't keep my bs steady with all those carbs no matter what I did so I went back to my 20 or less per day. Of course my insulin needs dropped as well. I took 1/2-1 unit per meal and 1 lantus as night. It's been 3 years now since DX and just within the last few months things have changed a bit. Now I take one unit bf, 1/2-1 an hour later and 1/2-1 two hours after that. One with lunch and dinner. Now 2 lantus instead of one. I have to stagger the morning or I just keep rising. It is cold and the insulin needs changed when the temp dropped. Maybe they'll decrease again when it gets warm again. Who knows.
So I too take very small doses but it's because of the way I eat. I eat vlc from above ground veggies, avocado and nuts only. I eat MODERATE protein and I fill in the rest with healthy fats to satisfy. There include avocado at every meal ( bridges the gap to getting food and insulin there at the right time. The fat and fiber make it magical so I don't hypo or hyper) olive oil, nuts and seeds, olives and mayo for the most part.

I eat the same macros at the same times of day and found my meals and boluses. Takes loads of thinking out of it. Then less anxiety. I kind of follow the Bernstein principle. Less, carbs, smaller meals etc means lower insulin doses and that means less errors for both hypo and hypers.

I could never get my insulin there at the same time as my food so generally I would hypo then hyper. The way I do it now keeps me steady.

Timing of your bolus matters too. This of course will depend on your meal. Higher carbs usually require advanced blousing. Higher fat lower carb can mean blousing closer to your meal. I generally bolus 10 min before my high fat meal. In the absence of carbs protein can turn to bs rapidly ( via gluconeogenesis)
So for me 10 min prebolus at lunch and dinner mean if I start at 87 I end at 87 give or take a few points but never anything radical. This is where you need to test test test.

I believe my LADA came to life after a really nasty virus about 8 years ago. But who know. It is what it is today.

I'm glad you're not resistant to taking insulin!!!

Wishing you luck and great health!