I have an unusual case so far...where do I belong?

It is possible that you are LADA (Type 1.5). However, it is possible that you are Type 2/Pre Diabetes TOFI (or MONW). Until you get the results of all your tests it is difficult to say which you are. It doesn't help that some people test negative on some tests and are misdiagnosed.

Midori2018 said:

So I am 36. I was diagnosed with prediabetes two years ago (which I now know IS diabetes, just a light manageable form).

Thing is, I am 5’7 and only 133 pounds..a far cry from overweight.

I noticed I started feeling thirsty especially after big dinner parties. Was getting very bloated. Sometimes after eating a large dinner with friends I could barely fit my shoes on from swelling. I was peeing a bit more too sometimes after lots of sugar I noted. When I say “lots” I’ve neber eaten tons. I eat all natural, all organic food. But at that point still ate bread rice etc.

When diagnosed my A1C was 5.7- not bad. So I started doing glucose monitoring. Most meals if I ate low carb came to be 120-140 one hour post meal. Sometimes if I ate out of had more food at friends it could creep up to 150,160 or 170 at the highest once at an Indian restaurant.

The last month I saw my numbers creep to 150 after what I thought was the typical low amount of carbs I usually eat. So, three weeks ago I eliminated ALL long chain carbs: no bread, rice, pasta or flour. I still get 1800 to 2000 calories, eat high protein and lots of veggies. I am trying to keep my blood sugar one hour post meal 100-115 to rest my body currently and my A1C now according to bloodwork last week is now 5.1 which is awesome. But it’s not without huge sacrifice and work.

I read recently about five new diabetic groups and I think I could be in group two. So far I do not have 3 out of the 5 antibodies for a autoimmune in diabetes. I will test last two this week. Every doctor has told me at my thin weight it is rarely caused by diabetes 2 and that I could have LADA or something similar.

Anyone else not have the antibodies but have blood sugar issues? I’m u sure where I belong, if my body will stay in a holding pattern, or what I need long term. I hate having such an unusual case as I don’t know where to turn.

Thanks so much

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Being a type 2 doesn't mean you have to be morbidly obese. People can be skinny on the outside, fat on the inside; fat cells packed around the internal organs (did you get checked for a fatty liver?) won't show as bellyfat, per se. An echo would show it, as would a scan, but you wouldn't be able to tell just looking at a person; they could be downright skinny. And whether you eat biological health foods doesn't really matter in terms of diabetes.. Carbs are carbs, no matter their origin, and we can't process those properly, but you've already noticed that. So while research is still being done and tests too, don't rule out type 2 just yet. (For me, I'm glad it's that one... I find it relatively easy to control with diet only). If it is, continuing low carb will be best if you want to try and avoid medication and complications. (Though protein can push your bs up too, you might want to consider eating more fat. That one doesn't spike bs at all.). Diabetes is only a very progressive disease if we do nothing about it. And you're off to a good start. Good luck!

I noticed that you are testing one hour after eating - the usual test is two hours after the first bite - because everyone has elevated BG after meals.
Although we are told that fat people with bad diets are the ones punished by becoming Type two diabetics, it is just one of those media myths - if your body cannot cope with the amount of carbs put into it, that is simply a fact, and reducing the carbs will often reduce the BG levels - apparently my readings are often lower than 'normal' people see - but I put on weight so quickly and easily when eating carbs that I need to keep my numbers down. I have had to eat small amounts all my adult life - something many people would not believe.
On a LCHF diet I manage my type two diabetes very well - it is not a high protein diet, as protein can be converted to glucose if there is not enough fat to burn. It is another myth that fats are bad for us - there are essential fats, and we can become rather unwell if we do not get them.

Once you get a final diagnosis you will feel better.
However try not and label yourself.

Have you got assistance from your GP to monitor your bgs and any hypos?
Whatever type, the job is the same keeping below 7.8mmol/1 to avoid damage from glucose which is circulating.
Focus on good bgs. You're welcome in any field we are friendly and don't encourage labels.
Welcome to the forum.
I'll tag @daisy1 for info which may be needed to be kept in mind.
Welcome to monitoring to keep good control and less complications.
They say type1 and type2 have different causes but same treatment. To keep high bgs in good control.

Midori2018 said:

Btw are there any tests they can do to see if you are part of the group that hasn’t too little insulin or part of the group that has insulin resistance?

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Have a look at this https://www.diabetes.co.uk/c-peptide-test.html

@Midori2018

Hello Midori2018 and welcome to the Forum Here is the Basic Information we give to new members and I hope you will find it interesting and 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.
  

Hi,

I hope your appointment will go well.
There is another rare type of diabetes called MODY. It is apparently due to a change in our genes. Some of them can be tested by a DNA test. I am thinking about it because you don't seem to have antibodies and mention being slim ( it definitely doesn't rule out type 2 but may mean you are not very insulin resistant). If you do the c- peptide test, the range for MODY is in between type 1 and 2. The DNA test is quite expensive and the NHS may not do it straight away. Another caracteristic of MODY, if you struggle over time to keep your good numbers with diet alone, is that they are extremely sensitive to gliclazide ( and possibly other sulfonylureas). Some people can stay decades on a very low dose.
All very complex as you know! I am happy to give you more information if you want, as our cases are quite similar, except that I didn't get the chance to be diagnosed as early as you.
As far as numbers are concerned, I try to stay below 7.8 one hour after meal and to be around 6 two hours after. I found out that 70 g of carb is what I need on a long term and adjust the medication accordingly. What I mean is that a very low carb diet doesn't fit everyone, long term....
Good luck!

Hi. As far as pancreatic beta cell death is concerned it can be caused by viruses etc as well as antibodies. The end result and treatment is the same so I would class all of them as LADA even though LADA is strictly (and not very sensibly) named from the antibody cause. I would suggest many T2 people who are thin and with high blood sugar are in fact LADA and not T2. This is a big problem due to rather silly definitions of diabetes types and the recent five new classifications are just as daft. The c-peptide test is more useful then GAD in highlighting beta cell death and hence the right treatment; the cause being largely irrelevant. I would suggest the OP should ask for a c-peptide test and go from there.

Daibell said:

Hi. As far as pancreatic beta cell death is concerned it can be caused by viruses etc as well as antibodies. The end result and treatment is the same so I would class all of them as LADA even though LADA is strictly (and not very sensibly) named from the antibody cause. I would suggest many T2 people who are thin and with high blood sugar are in fact LADA and not T2. This is a big problem due to rather silly definitions of diabetes types and the recent five new classifications are just as daft. The c-peptide test is more useful then GAD in highlighting beta cell death and hence the right treatment; the cause being largely irrelevant. I would suggest the OP should ask for a c-peptide test and go from there.

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Sorry to hijack. Couldnt help notice that I have some these characteristics. Weight is ideal, was diagnosed 2 years back at 51 hbac, cut bread and pasta and came down to 46 and then to 44. Same diet stopped working and it went back to 50. Now I am reducing carbs even more. Can I ask my GP for c-peptide and GAD test?

Hi Midori,
I lurk in this section b/c have not been diagnosed 1.5, but like you have been told that is "probably" what I am/will be eventually (currently classified as "pre" but can only maintain those #s with very low carbs and metformin, so it's a bit iffy). Whatever "type" you are I probably am too--we sound to have very similar profiles. Just chiming in to say you aren't alone--I don't have fatty liver (based on blood tests and ultrasound) and don't know if I have antibodies b/c my current health region won't cover the tests, but had lowish c-peptide, high-but-not-scary-high blood sugars, and classic diabetes symptoms. Always ate very whole food diet and exercised, an similar to you in height/weight/age. There's something about with us, but it seems only time will tell whether/how long we can keep things at bay with diet and minor medication. I try not to get too stressed out about it, but at times the anxiety of "waiting for the other shoe to drop" can be challenging (e.g., whenever I'm getting sick and sugars spike, but I don't know yet that I'm getting sick!).

Hi,

I’m 35 and was originally diagnosed as Type 2 at 26. Before that, I was pushing 16 stone but had lost 3 stone, but fit the criteria in terms of weight and being as risk of it.

Since then, I’ve dropped to a 8-10, generally weighed around 10.5 stone but my control has got steadily worse. I was tested for Type 1 during my pregnancy with my daughter, as I don’t fit the typical Type 2 profile either. The tests came back negative and after I gave birth but initially just put back into Metformin.

That didn’t last long at all and slowly had various medication introduced and before trying for our 2nd child (currently 30 weeks along) was on Metformin, Gliclazide, Alogliptin and Dapaglifozin - by the time I went for preconception advice, none of that was really working and my HBA1C has been creeping up. It’s worth saying now that I don’t have the perfect diet, I indulge here and there, but I certainly behave most of the time, so no real explanation for the sudden increase.

I was sent for some genetic testing for MODI and they came back negative too.

I’ve since been seen by the Consultant through the clinics I have to attend for my 2nd pregnancy and he has switched me to LADA. He said although the MODI test were seen as negative, I had a very small trace of antibodies in 1 of them.

I’m on insulin for my pregnancy but will now be staying on it for the foreseeable future!