Confused about my doctors/consultants advice, am I type 1.5?

[mrbondsbody]

I recently was referred the hospital because they find it strange that I am so thin for a type 2 diabetic. I have been tested for type 1 by two antibodies and its negative. She said there is an 80% chance I am not type 1, however there might be a 20% chance that I am a slow burn type1 diabetic. I am on the VLCD (5% carbs, 15% protein, 80% fat).

I had my ketones measured at the clinic and they were 2.5. Which is not surprising as its a ketogenic diet. However the doctor wants to put me back on a carb diet, just to see if I produce ketones.

The funny thing is that there is a test that can be done (a total of 4 antibodies) instead of going back to carbs but its not offered on the NHS only in research studies. I might go private, however the doctor advised against it. I checked it out and it cost about £600!

My blood glucose are a consistent 5-6 mmol even after eating. But they are worried I could just sky rocket into ketoacidosis.

Any advice?

Thanks,

James

 

[Ian DP]

Hi James
I am not sure what I would do in your case..... So you are right to ask the question and hopefully someone with more knowledge than myself will come along and give some advise..... I am sure they will.

In the mean time, it might help if you could give a little more info. Your age, how long you have been a T2 and if you are on any medication.... And if you have been overweight beforehand and lost weight recently.

I am LADA, age 59, first diagnosed T2 18months ago, then T1 in the honeymoon period (LADA) 15 months ago. The only real difference it made to me was that my consultant said I should stop all my Gliclazide medication strait away, and that my Metformin would not help either.

Like you I am on a very low carb diet (5,15, 80). And am thus ketogenic and often have keytones....that's normal.

If you are not on any medication now, even if you were diagnosed T1 (LADA) I don't think it would change anything.
You are clearly doing everything possible to keep your diabeetes under control. Maybe if you are a T2 you might be able to improve your bodies ability to make insulin following low BG levels, whereas if a T1 you will end up on insulin eventually, But treatment is the same.

 

[jack412]

it's not a silly idea to get back on the carbs if you BG is erratic, till they are happy you're T2..100g a day should knock you out of ketosis and get under 0.6 ketones..do you have the urine ketostixs
have a look at the T1's sick day chart, double numbers and ketones need to be assessed
https://www.ispad.org/sites/default...pad_guidelines_2009_-_sick_day_management.pdf

 

[NoCrbs4Me]

Consistently 5-6 mmol/L?? Why change anything? What are your doctors on about? 10-20% type 2s are thin or normal BMI when diagnosed. What's a "slow burn" type 1?

 

[mrbondsbody]

hi guys thanks for your replies. A little background is that I am 33 years old, I got diagnosed about three months ago. My dad is t2 and was diagnosed at a similar age and is also slim at the time of his diagnosis and has not developed into Type1 (now 65).

I have never been on medication as I refused it. I am a scientist and researched treatment and found this forum. .

I went straight onto a low carb diet and exercise and its looks to be working. I have never been "overweight", although I have always had a belly. My arms and legs are lean however my belly is where all my fat is. I wouldn't say I lost weight without trying, I have always tried to lose my belly fat and never managed it no matter how hard I have tried.

 

[mrbondsbody]

I know, it was a surprise to me. The doctor said the only way to tell if I am type1/LADA is by putting me back on carbs and seeing if I produce ketones.

The slow burn type 1 is what the doctor said to me. I guess she meant being in the honeymoon phase towards LADA

Consistently 5-6 mmol/L?? Why change anything? What are your doctors on about? 10-20% type 2s are thin or normal BMI when diagnosed. What's a "slow burn" type 1?

 

[Daibell]

I don't quite understand the thinking behind your doctor's suggestion to increase carbs to produce ketones? It doesn't make any sense to me. The body produces ketones from Ketosis when it burns fat due to low carbs. If you increase the carbs you will stop producing ketones unless your insulin production is so low that you still burn fat and also risk Ketoacidosis which is dangerous. Why doesn't the doc do a c-peptide test for your insulin levels? I had mine done privately and it confirmed my view that my insulin was low i.e. a LADA as I had never been overweight (my diabetes GP was useless). Note ref the latest draft NICE Dec 2014 diabetes pathways update, the longer you wait to test for anti-bodies after diagnosis the more chance of a false hegative but the c-peptide test becomes more reliable. Do ask the doc for a c-peptide test. At your young age LADA is very likely and a negative GAD may be false. Note viruses etc can destroy islet cells. In any event if you have low insulin you need tablets or insulin to produce/provide more insulin

 

[phoenix]

There could also be a possibility of MODY, a hereditary form of diabetes. Have a look at this site which describes the various types and has an experimental MODY probablility calculator.
http://www.diabetesgenes.org/content/mody-probability-calculator

 

[mrbondsbody]

The doc said she might do a c-peptide test, although she did not say whether she would notify me on the results, I'll try ringing up in a couple of weeks. She just said there was two antibodies not available on the NHS that would provide proof that I was not LADA.

I don't quite understand the thinking behind your doctor's suggestion to increase carbs to produce ketones? It doesn't make any sense to me. The body produces ketones from Ketosis when it burns fat due to low carbs. If you increase the carbs you will stop producing ketones unless your insulin production is so low that you still burn fat and also risk Ketoacidosis which is dangerous. Why doesn't the doc do a c-peptide test for your insulin levels? I had mine done privately and it confirmed my view that my insulin was low i.e. a LADA as I had never been overweight (my diabetes GP was useless). Note ref the latest draft NICE Dec 2014 diabetes pathways update, the longer you wait to test for anti-bodies after diagnosis the more chance of a false hegative but the c-peptide test becomes more reliable. Do ask the doc for a c-peptide test. At your young age LADA is very likely and a negative GAD may be false. Note viruses etc can destroy islet cells. In any event if you have low insulin you need tablets or insulin to produce/provide more insulin

 

[mrbondsbody]

Interesting as my dad has t2 and his mum (my grandmother) had it too. I'll mention it to my doctor next time. Thanks!

There could also be a possibility of MODY, a hereditary form of diabetes. Have a look at this site which describes the various types and has an experimental MODY probablility calculator.
http://www.diabetesgenes.org/content/mody-probability-calculator

 

[mrbondsbody]

Just had a quote back from the lab. I can get the following tests done for £437

Islet Cell Cytoplasmic Autoantibodies (ICA)
Glutamic Acid Decarboxylase Autoantibodies (GADA)
Insulinoma Associated-2 Autoantibodies (IA-2A)
Insulin Autoantibodies (IAA)

I need to check with the doctor which ones I have had so far, so I save on cost.

 

[phoenix]

Many people only have GADA tested because that is by far the most common in LADA ( GAD positivity is often part definition)The normal panel autoimmune includes the 4 you have mentioned :
http://labtestsonline.org/understanding/analytes/diabetes-auto/tab/test/
http://www.diapedia.org/type-1-diabetes-mellitus/autoantibodies
The article above explains why IA-2β isn't normally tested for.
ZnT8 antibodies were only discovered a few years ago. On forums, I have never heard of any one being tested for it (google tells me that there is a fairly recently approved test on the US market but I've no idea if you find a lab doing the test in the UK)

In one study testing for this antibody increased the percentage of T1s found to be antibody positive but 94% were already found to be positive with a test panel of 3 antibodies

62.3 % of new-onset T1D patients found carrying ZnT8 autoantibody, while less than 2 % of controls were positive. Presence of ZnT8 autoantibody was detected in 26 % of T1D patients that were previously classified as autoantibody-negative based on the existing markers. Including ZnT8 in the assays with three other autoantibodies, INS, GAD, and IA2, increased the sensitivity of T1D autoreactivity detection: (1) 98 % of new onset T1D patients tested had at least one of the four auto-antibodies compared with 94 %

(doesn't say how many subjects)
http://www.betacell.org/content/articleview/article_id/234/page/2/glossary/0/

 

[nicolaryan09]

Interesting as my dad has t2 and his mum (my grandmother) had it too. I'll mention it to my doctor next time. Thanks!

My son is 5 year old and was diagnosed diabetic in feb (his dad and grandmother are type 1) but he is showing neg for all antibodies. He is having bloods taken and being tested for MODY later this month and i believe they are looking at his dads diagnosis also. Im pretty sure he is type 1 but they test for this rarer type if you dont have a typical diagnosis (apparently) although i am no expert (yet) It would defo be worth mentioning.

 

[nigelho]

I was diagnosed at the age of 60, never been over weight, so GP said I must be type 2 and given 1 metformin 500mg tablet, don't need meter etc. Two week later in hospital and put immediately onto insulin. Within 2 months C-peptide tests send to Cambridge lab twice and I then found out that the lab refused to carry out the tests saying it's not necessary. WHY////?????I never really found out.....so I've classed myself type 1 since then. A few years later surgery DSN did a C-peptide test but the results were useless as I've already been using insulin. In 2013 got referred to another diabetes team in Addenbrookes and a GAD test done for the records as consultant didn't thing it would prove anything and he's classed me as type 1 which I've been happy with all along. To me it doesn't if it;'s LADA, Type 1.5 or just 1. I take my Apidra, Humulin I and 6 X 500mg metformin SR tablets and most of the time my BSs are 4-7mmol range and my last HBA1C was 49 (6.6%) which is the best I've ever been. Did DAFNE in 2013 and I manage my diabetes with the help of one of the DAFNE nurses who ran my course as I trust her. Both the DAFNE Tean and my diabetes clinic are all in the same dept at Addenbrookes so we have a cross over of treatments there....GREAT.

 

[mrbondsbody]

Funny its addenbrokes hospital that I went to!!!

I was diagnosed at the age of 60, never been over weight, so GP said I must be type 2 and given 1 metformin 500mg tablet, don't need meter etc. Two week later in hospital and put immediately onto insulin. Within 2 months C-peptide tests send to Cambridge lab twice and I then found out that the lab refused to carry out the tests saying it's not necessary. WHY////?????I never really found out.....so I've classed myself type 1 since then. A few years later surgery DSN did a C-peptide test but the results were useless as I've already been using insulin. In 2013 got referred to another diabetes team in Addenbrookes and a GAD test done for the records as consultant didn't thing it would prove anything and he's classed me as type 1 which I've been happy with all along. To me it doesn't if it;'s LADA, Type 1.5 or just 1. I take my Apidra, Humulin I and 6 X 500mg metformin SR tablets and most of the time my BSs are 4-7mmol range and my last HBA1C was 49 (6.6%) which is the best I've ever been. Did DAFNE in 2013 and I manage my diabetes with the help of one of the DAFNE nurses who ran my course as I trust her. Both the DAFNE Tean and my diabetes clinic are all in the same dept at Addenbrookes so we have a cross over of treatments there....GREAT.

 

[Daibell]

I was diagnosed at the age of 60, never been over weight, so GP said I must be type 2 and given 1 metformin 500mg tablet, don't need meter etc. Two week later in hospital and put immediately onto insulin. Within 2 months C-peptide tests send to Cambridge lab twice and I then found out that the lab refused to carry out the tests saying it's not necessary. WHY////?????I never really found out.....so I've classed myself type 1 since then. A few years later surgery DSN did a C-peptide test but the results were useless as I've already been using insulin. In 2013 got referred to another diabetes team in Addenbrookes and a GAD test done for the records as consultant didn't thing it would prove anything and he's classed me as type 1 which I've been happy with all along. To me it doesn't if it;'s LADA, Type 1.5 or just 1. I take my Apidra, Humulin I and 6 X 500mg metformin SR tablets and most of the time my BSs are 4-7mmol range and my last HBA1C was 49 (6.6%) which is the best I've ever been. Did DAFNE in 2013 and I manage my diabetes with the help of one of the DAFNE nurses who ran my course as I trust her. Both the DAFNE Tean and my diabetes clinic are all in the same dept at Addenbrookes so we have a cross over of treatments there....GREAT.

Hi. I've read that a c-peptide test only measures you own insulin production so can be valid in the presence of injected insulin. I assume this is because it measures the related peptides and not the insulin itself?

 

[LucySW]

If you are not on any medication now, even if you were diagnosed T1 (LADA) I don't think it would change anything.
You are clearly doing everything possible to keep your diabeetes under control. Maybe if you are a T2 you might be able to improve your bodies ability to make insulin following low BG levels, whereas if a T1 you will end up on insulin eventually, But treatment is the same.

Yes, that's the point, isn't it. Until and unless your blood sugars rise, only your diet will change, no?

I still wouldn't do it, though. It's VLCHF that is keeping your bloods at a safe normal level. That is great. And I don't see how reintroducing you to non-ketogenic carb levels and waiting to see if you develop v high BG and dangerous levels of ketones can possibly be responsible. If there's a good reason, It's a mystery to me.

If your BG eventually rises, then it will be clear that you do need insulin, ie that you're type 1. That you can catch by testing, and I think that's what you should do.

I don't know what to suggest about tests. Is it GAD you got a negative result on? Phoenix is your best guide here.

So just keep monitoring your BG and, if it begins to rise steadily, your ketones too. It's high BG though - over ? 11 ? - that will be your tripwire. And if your BG rises seriously, you'll be asking for insulin, won't you?

Thank goodness, with diabetes we can do a lot ourselves.

Lucy

 

[smidge]

Hi mrbondsbody! I'm glad to see that several of the guys have mentioned MODY - it seems highly unlikely you are Type 2 - possible, but you do not have the main risk factors i.e. overweight, over 45, female with PCOS, of Asian origin and over 25 (obviously I don't know for sure you don't have this risk factor!). So, unlikely.

LADA would be the first thought - and the lack of antibodies do not actually rule that out (the presence of them would be a cause of diagnosis, but the absence doesn't rule it out). LADA is not hereditary although it is thought to have a genetic element, so your family history of diabetes would be largely a coincidence. I would say that although LADA is the most likely explanation, you do have the markers for the less common MODY - which is a whole set of different genetic forms of diabetes rather than a single condition. If you do have LADA, a VLCD will help with the most effective use of your remaining beta cells, but you will eventually progress to insulin, so you should test fairly frequently and make sure you insist on regular HbA1cs to make sure you don't end up very ill by failing to notice you have progressed beyond the point where you need insulin.

At your age i.e. an age where you have or might expect to one day have children, and with your family history of a non-progressing form of diabetes, the NHS is actually very sympathetic to funding MODY tests, because it is hereditary and you would want to know as soon as possible if you have passed the condition on to children (or might do one day). I think Exeter is the only place where tests for MODY are carried out, although that might have changed in the last few years.

Anyway, have a read of the Exeter MODY web site and if you think it's a possibility, ask your doctor about it - but be prepared that they'll know nothing about MODY and you might need to contact Exeter yourself to see what your options are for testing.

Nothing wrong with low-carb though whichever type of diabetes you have!

Smidge

 

[Spiker]

Many people only have GADA tested because that is by far the most common in LADA ( GAD positivity is often part definition)The normal panel autoimmune includes the 4 you have mentioned :
http://labtestsonline.org/understanding/analytes/diabetes-auto/tab/test/
http://www.diapedia.org/type-1-diabetes-mellitus/autoantibodies
The article above explains why IA-2β isn't normally tested for.
ZnT8 antibodies were only discovered a few years ago. On forums, I have never heard of any one being tested for it (google tells me that there is a fairly recently approved test on the US market but I've no idea if you find a lab doing the test in the UK)

In one study testing for this antibody increased the percentage of T1s found to be antibody positive but 94% were already found to be positive with a test panel of 3 antibodies

(doesn't say how many subjects)
http://www.betacell.org/content/articleview/article_id/234/page/2/glossary/0/

I thought that GADA was the only test out of those 4 that showed a useful correlation to T1?

 

[Spiker]

I'm also confused as to why your doc wants to reintroduce carbs and check for ketones. Have you had an HBa1c test done? The best bet would be her suggestion to do a C-peptide test. Until then LADA, MODY or T2 are all options. Or even straight T1.

The only thing I'm slightly concerned by is that your 2.5 ketone level is on the higher side for nutritional ketosis. That's a blood level and not a urine level right? Have the ketones be tested regularly or just the once, at your first presentation to the doc?