Tests for LADA/ Type 1.5

[Jache]

Hi everyone,

A bit of background (which I may have provided in earlier posts here- sorry if I'm repeating myself):

I'm 36 this year and I've always been skinny. Midway through my pregnancy I was told that I was borderline diabetic. 3 months after I gave birth to my baby girl, I did an OGTT in which showed that I now had "full blown" Diabetes. The first endocrinologist that I saw said it is probably Type 2 because my fasting blood sugar levels were normal. He provided me with dietary guidelines and monitored me. I had 2 or 3 more visits with him after my first appointment in Aug 2013. Each time my hba1c was in the normal range. Thus by the third visit he said I do not have Diabetes anymore. After the doctor's "pronouncement" I ate freely (partly cos I had lost a lot of weight from stress and breastfeeding the past year and wanted to put weight back on) for about 6 months or so. Managed to get my weight up, but just as that happened, I started to experience frequent urination at nights. I feared this was a sign of Diabetes and I booked an appointment to see a different endocrinologist this time.

This second endocrinologist told me that it's unlikely that Diabetes would go away, especially since I was slim at the time of diagnosis. He advised me to monitor my blood sugar levels before and 2 hours after meals for the next 1.5 months, before I see him again. He also told me that because there was a bit of "ketones" in my urine, he would do a blood test during my next visit, to test if I am Type 1.

Sorry for the long story (and thanks for reading this far). My question is, is the blood test for type 1 the same as the blood test for type 1.5? Based on what I read the tests for type 1.5 is c-peptide and GADA. Is that correct?

And based on my regular blood sugar tests these few weeks, there is no doubt that I still have Diabetes.

 

[noblehead]

I'd imagine a GAD Test would determine what type you have Jache.

 

[Ian DP]

I was Dx T2 18 months ago, then through a GAD test Dx T1 15 months ago. My official hospital records say I am a T1 in the honeymoon stage, no mention of LADA. My consultant said at the time my condition was often referred to as LADA or sometimes T1.5, but that really I am a T1 in in the early stages and that I would be a full T1 soon.
If your tests are positive and you are given a Dx of T1, you will be LADA, or T1 in the honeymoon period, this because you obviously still have some insulin making beta cells remaining because you are able to keep to normal, or near normal BG levels. Like myself.
I still have sufficient beta cells remaining, and thus after 15 months am still not on insulin. But this is only because of my low carb diet. With a LCHF diet I am able to keep to normal BG levels without insulin.
Some experts say that beta cells only die off with high BG levels, some put this at anything above 7.8. Some say if you can keep fasting levels at 4.6 and 2 hours after eating levels at 5.6 you can extend your honeymoon period. This is working for me, so far..... Other experts (nearly all those in the NHS) say this is not true.
If you are Dx T1, there are a number of us LADAs here and if you look through the LADA forum section I am sure you will find many posts of interest.

 

[Daibell]

Hi. Yes, the tests for T1 and T1.5 (LADA) are the same i.e. GAD and c-peptide. T1.5 is essentially T1 as an adult. LADA strictly speaking relates to T1 as aresult of GAD or other antibodies, but you can get Late onset T1 thru other things such as viruses, pancreatitis and so on. Note for info that at diagnosis the GAD test is reliable but c-peptide less so, but after many years it's the reverse.

 

[Jache]

Thanks everyone for the replies. Then I am glad my current doctor is going to test me for T1. Based on my profile, I think there is a good chance that late onset T1 is what I have...

I have been trying to eat less carbs (or at least less obvious carbs) but somehow my blood sugar numbers are still not ideal. Eg, when I consumed only home cooked Tom Yum soup, fish, cauliflower and fried leafy veggies, my blood sugar still rose from 5.5 (before meal) and 7.1 2 hours after. When I consumed a mushroom salad with Feta cheese and rocket and chick peas, my blood sugar rose from 4.7 to 5.9. Shouldn't it be that if I ate so little carbs, the rise in blood sugar should be less? Do such figures indicate that I have Type 1.5?

Ian, yes I have been reading the posts on this Forum, and lately the Type 1.5 forum especially. Initially I was terrified at the idea of possibly having T1, but after reading the posts of the folks here, I am comforted that it CAN be managed with effort. At this moment, it is just honestly very frustrating to try so hard to lower intake of carbs, which in turn causes me to lose weight which I don't want to lose, and yet still not be able to "control" my blood sugar levels or have them reach the ideal levels. My fasting blood sugars have usually been 5 plus, and my post meal 2 hours later has usually been above 5.5 I kind of feel like giving up sometimes since nothing seems to be working, but I feel more hopeful just browsing this forum. Hoping and praying that I am able to control this one day, if nothing then for the sake of my 2 little ones. They are the ones that have been keeping me motivated.

Again, appreciate all your replies

 

[LucySW]

Jache, rises of only 2.0 mmol at meals are very good and show you are limiting your carbs, but the point is that you want to get rid of those spikes completely, and you can only do that with mealtime insulin, once you have it. You need it, if you are in fact late onset T-1.

So have the test.

I was completely terrified too of being T-1. I had the worst pictures running through my mind. I thought this was the end. I'd balloon to some strange, alien thing, and be at the beck and call of doctors who knew nothing about me.

But it wasn't like that AT ALL, and once you are on basal/bolus it is YOU who is in the driving seat.

This is fear. It's quite understandable, but try and get thro it. Having said which, it took me six months. Read my thread on here ...

The reality is much less awful than you think.

Good luck, Lucy

 

[Lesleywo]

Jache, rises of only 2.0 mmol at meals are very good and show you are limiting your carbs, but the point is that you want to get rid of those spikes completely, and you can only do that with mealtime insulin, once you have it. You need it, if you are in fact late onset T-1.

So have the test.

I was completely terrified too of being T-1. I had the worst pictures running through my mind. I thought this was the end. I'd balloon to some strange, alien thing, and be at the beck and call of doctors who knew nothing about me.

But it wasn't like that AT ALL, and once you are on basal/bolus it is YOU who is in the driving seat.

This is fear. It's quite understandable, but try and get thro it. Having said which, it took me six months. Read my thread on here ...

The reality is much less awful than you think.

Good luck, Lucy

Can I just ask ..... I get similar rises post prandial as Jache quotes above ..... even when I am low carbing. If you are low carbing and your HbAlc is what the doctors consider normal, how can you be diagnosed with diabetes?

I've been low carbing most of the time for a while ... today I decided I would try some porridge with 1/2 pear, protein powder, cream and pumpkin seeds. Coped well, not much of a rise, but set me off craving more and more carbs all day, resuling in a bit of a blow out this afternoon (4 ryvitas with cheese & NAS marmalade) and one hour later I was at 9.4. Is this too high?

 

[Ian DP]

I find tomatoes and chick peas raise my BG levels. I limit tomatoes to just one small plum tomatoe per meal. Chick peas in very very small quantities might be ok.
The problem of getting your BG levels down further depends on the amount of healthy insulin making beta cells you have remaining. If you don't have sufficient healthy cells remaining, then, as Lucy says, insulin is the key. A little insulin will help you keep your BG levels at normal levels.
There is nothing you can do really to improve your beta cell situation, only stabilise it (with normal BG levels).
I guess you have a few weeks before knowing the test results (my GAD test took 4 weeks to come through). I guess you won't be able to go on insulin before diagnosis, so you have a few weeks to try, with very low carbs, to see if you can get to normal levels.
I also guess that if you are diagnosed T1 / LADA they probably will not want to put you on insulin with BG levels that you have. The NHS guidelins seem to be wait until a patient BG levels are in double figures befor insulin...... Which, in my opinion is very wrong. I have convinced my hospital nurse / consultant that I want to go on insulin much earlier than that, and they have agreed at 7.0 levels, and given me an insulin pen ready to use when I hit those levels.... I will probably use it when I regularly can't get my fasting averages below 6.0.... This to preserve my healthy beta cells.
If you do go very low carb, make sure you eat ample fat.... Protein can / will also raise BG levels, but fat won't. Fatty meats and fish (salmon, pork and lamb chops, fatty steaks, chicken thighs and legs). If you do go LCHF make sure you put salt on your food, especially if you get leg cramps.

 

[Ian DP]

Can I just ask ..... I get similar rises post prandial as Jache quotes above ..... even when I am low carbing. If you are low carbing and your HbAlc is what the doctors consider normal, how can you be diagnosed with diabetes?

I've been low carbing most of the time for a while ... today I decided I would try some porridge with 1/2 pear, protein powder, cream and pumpkin seeds. Coped well, not much of a rise, but set me off craving more and more carbs all day, resuling in a bit of a blow out this afternoon (4 ryvitas with cheese & NAS marmalade) and one hour later I was at 9.4. Is this too high?

You are diabetic because you need to eat low carb foods to keep your BG levels low. My BG levels are same as a normal persons, lower than NHS diabetic guideline, my GP DSN put me in non diabetic category, and keeps on stopping my test strip prescription!, but luckily my GP and hospital DSN realise it's my diet, and only my diet that keeps me at normalised BG levels.

9.4 is much to high, in my opinion.... That's if you want to preserve your few remaining insulin making beta cells. Some research have shown that beta cells destruct over 7.8 levels.... So maybe you lost a few more during that time.... Maybe not.... Know way of knowing. But many have found that if you can keep your BG at normal levels and avoid spikes you can keep your few remains healthy beta cells for a long long time.....
You are doing the right thing, and testing before and after to see what food spike your BG levels.

 

[Jache]

I tested my blood sugar 2 hours after eating lots of broccoli and salad with just a little bit of fish and olive rice. And my level was 10.0! This is my first time hitting double digits.

I'm panicking and so frustrated, really. I never expected such a high reading after a meal like this.

Sorry am just offloading here. I really don't get it. My poor husband has had more than his fair share of crazed panicky text messages from me since I started testing.

 

[Ian DP]

I tested my blood sugar 2 hours after eating lots of broccoli and salad with just a little bit of fish and olive rice. And my level was 10.0! This is my first time hitting double digits.

I'm panicking and so frustrated, really. I never expected such a high reading after a meal like this.

Sorry am just offloading here. I really don't get it. My poor husband has had more than his fair share of crazed panicky text messages from me since I started testing.

What was it before eating.... If high before it will be high after, even low carb
Lots of broccoli can equate to high carb... You have to watch quantities... Not sure what olive rice is.... Rice is very carby..... It might be better if you eat a lager portion of fish and plenty of oil.... I have loads of real Mayo on my salads.... Very low carb..... I find i can eat more carbs the more fat I eat at the same time. Eg little carb, no fat my BG spikes..... Some carbs lots of fat, little rise

 

[Lesleywo]

You are diabetic because you need to eat low carb foods to keep your BG levels low. My BG levels are same as a normal persons, lower than NHS diabetic guideline, my GP DSN put me in non diabetic category, and keeps on stopping my test strip prescription!, but luckily my GP and hospital DSN realise it's my diet, and only my diet that keeps me at normalised BG levels.

9.4 is much to high, in my opinion.... That's if you want to preserve your few remaining insulin making beta cells. Some research have shown that beta cells destruct over 7.8 levels.... So maybe you lost a few more during that time.... Maybe not.... Know way of knowing. But many have found that if you can keep your BG at normal levels and avoid spikes you can keep your few remains healthy beta cells for a long long time.....
You are doing the right thing, and testing before and after to see what food spike your BG levels.

That's what I don't get .. I have to eat low carb to keep to normal blood sugar levels (just like you do, though I'm not as low carb as you and my bloods aren't as low as yours). Yet my endo says I'm not diabetic and even though I'm GAD positive he says 'you've long past the risk period' whatever the heck that means (it was via email as when I saw him the GAD test wasn't back, though we both knew it was positive since it was 3 years on last test (though I think he had forgotten and now is testing GAD and C-Peptide every 3 months for some unknown reason). I'm just frustrated because I would really like a definite yes or no.

I am starting with a new endo at the end of May .. have you any advice on what to do between now and then, i.e. should I go back to eating more carbs but still limit to under 150g a day, so as to give a more realistic HbAlc - my first HbAlc on a high carb diet was 5.8% ... still 5.8% on reduced carb diet - or should I insist on any other diabetes test? I remember @Brunneria said she has never officially been diagnosed with Type 2 because she started low carbing in the prediabetic phase, as I have.

 

[Jache]

Hi Ian I wasn't able to test prior to the meal. I did test first thing when I woke up and it was 4.7. About 2 hours before lunch I had a little bit of noodle and a small piece of pastry.

I am thinking that my blood sugar levels have been on the rise since I started tearing about 1.5 months ago. I used to be able to get levels below 6.0 after eating little bit of rice and broccoli. But not anymore it seems.

I thought broccoli and cauliflower were veggies and good for me. Are they actually considered carbs? And so green leafy veggies are better?

Also if eating more protein also causes rise in blood sugar (as I believe they are carbs of some sort as well), then how do I safely consume fatty meats? Maybe I could just eat the skin?

Finally what guides have you been using to help you with forming your current diet? I have seen fitness pal ap and carbs and calls mentioned here. Are these the ones you use too?

Lesley I also changed my endocrinologist because he conveniently told me I was no longer diabetic despite an OGTT that clearly indicated otherwise. He had not taken into account the fact that I was breastfeeding and also had been eating less which could have led to the "good" hba1c levels. I didn't feel comfortable with his approach and his "logic" so I am seeing a different doctor now.

I am feeling a little better now.

I will try again the next meal and may the odds be in my favour. =]

Thanks for listening everyone.

 

[Lesleywo]

Hi Ian I wasn't able to test prior to the meal. I did test first thing when I woke up and it was 4.7. About 2 hours before lunch I had a little bit of noodle and a small piece of pastry.

I am thinking that my blood sugar levels have been on the rise since I started tearing about 1.5 months ago. I used to be able to get levels below 6.0 after eating little bit of rice and broccoli. But not anymore it seems.

I thought broccoli and cauliflower were veggies and good for me. Are they actually considered carbs? And so green leafy veggies are better?

Also if eating more protein also causes rise in blood sugar (as I believe they are carbs of some sort as well), then how do I safely consume fatty meats? Maybe I could just eat the skin?

Finally what guides have you been using to help you with forming your current diet? I have seen fitness pal ap and carbs and calls mentioned here. Are these the ones you use too?

Lesley I also changed my endocrinologist because he conveniently told me I was no longer diabetic despite an OGTT that clearly indicated otherwise. He had not taken into account the fact that I was breastfeeding and also had been eating less which could have led to the "good" hba1c levels. I didn't feel comfortable with his approach and his "logic" so I am seeing a different doctor now.

I am feeling a little better now.

I will try again the next meal and may the odds be in my favour. =]

Thanks for listening everyone.

Hi Jache, I've never had an OGTT (my GP claims they are now extinct, diabetes only diagnosed now by HbAlc). My fasting on my metre is usually between 5.3 and 6.6 (usually the lower end) but lab results are under 5. Are you happier with your new endo? Mine is very good but I'm wondering if he's past his use by date .. he's near retirement and doesn't seem that interested in the Addisons Disease which can be life threatening if not properly controlled. I asked him if I could have a cortisol injecting kit in case of crisis (on the advice of someone else on the forum whose sister died of Addisons) and he said I didn't need one! Keep testing!

 

[LucySW]

Jache, You won't be able to avoid rises of 1.5-2.0 mmol with meals. You get those because your frontline (bolus) insulin capacity has packed up. As your baseline levels are good, those small spikes won't be doing you that much harm. But you still want to get rid of them. And you wouldn't really get them if you weren't in fact T-1/1.5/call it what you like.

Those spikes are that small because you are low carbing. If you weren't, they would be much bigger - up to 11/12 frequently. THOSE are worth anything to avoid.

So a) keep low carbing

B) I would ask hard for the test and to start basal/bolus soonest. They'll probably need persuading. Start to prepare your case.

Good luck.

 

[LucySW]

Can I just ask ..... I get similar rises post prandial as Jache quotes above ..... even when I am low carbing. If you are low carbing and your HbAlc is what the doctors consider normal, how can you be diagnosed with diabetes?

Because if and when you stop low carbing, your BGs will go through the roof. They are only in normal range because you are treating yourself, by diet.

 

[LucySW]

I am thinking that my blood sugar levels have been on the rise since I started tearing about 1.5 months ago. I used to be able to get levels below 6.0 after eating little bit of rice and broccoli. But not anymore it seems.

I thought broccoli and cauliflower were veggies and good for me. Are they actually considered carbs? And so green leafy veggies are better?

"Since I started tearing" ??

Green veggies like broccoli and cauliflower are a) carbs ( but highly benign and low carb content), b) really excellent for us. Yes, of veggies, those that grow above the ground = those that are green or leafy are great for us to eat. Root veg like potatoes, beetroot, are problematic and you need to look them up. The odd carrot is okay, but don't have loads of roast parsnips.

You need protein - probably about 70 to 80 g net protein per day, I.e. Equiv of two or three helpings of meat or fowl.

You need the calculator! Here it is. Wonderful. http://www.phlaunt.com/diabetes/33614154.php

That clarifies everything and gives you a framework

But also, if it's true - confirmed by meter readings - that your numbers are going up and up, get onto them and try and get things speeded up. Because then insulin will be indicated. Both types - not just basal.

 

[Daibell]

Hi. I agree with Lucy and others. If you have GAD antibodies then you have them and further tests for them is a waste of time and money. LADA can come on at widely varying speeds and can take years. Tablets may help for a few years but insulin will be needed in the end unless you keep the carbs extremely low. It sounds like moving to a new endo is a wise thing. Hopefully you will have something like Gliclazide and or Sitagliptin added for a while with a move to insulin as and when needed.

 

[Jache]

Hi Jache, I've never had an OGTT (my GP claims they are now extinct, diabetes only diagnosed now by HbAlc). My fasting on my metre is usually between 5.3 and 6.6 (usually the lower end) but lab results are under 5. Are you happier with your new endo? Mine is very good but I'm wondering if he's past his use by date .. he's near retirement and doesn't seem that interested in the Addisons Disease which can be life threatening if not properly controlled. I asked him if I could have a cortisol injecting kit in case of crisis (on the advice of someone else on the forum whose sister died of Addisons) and he said I didn't need one! Keep testing!

Hi Lesley, in Singapore where I'm from, the OGTT still seems to be the standard test to test for diabetes.

I've thus far only visited my new endo once. But I do like his approach. He encourages me to test and is also planning to test me for type 1 due to presence of Ketones in my urine. My previous endo didn't even bother to test for type 1 even though he had also see the same test report (showing the ketones). He also takes the time to talk to each of his patients.

 

[Jache]

"Since I started tearing" ??

Green veggies like broccoli and cauliflower are a) carbs ( but highly benign and low carb content), b) really excellent for us. Yes, of veggies, those that grow above the ground = those that are green or leafy are great for us to eat. Root veg like potatoes, beetroot, are problematic and you need to look them up. The odd carrot is okay, but don't have loads of roast parsnips.

You need protein - probably about 70 to 80 g net protein per day, I.e. Equiv of two or three helpings of meat or fowl.

You need the calculator! Here it is. Wonderful. http://www.phlaunt.com/diabetes/33614154.php

That clarifies everything and gives you a framework

But also, if it's true - confirmed by meter readings - that your numbers are going up and up, get onto them and try and get things speeded up. Because then insulin will be indicated. Both types - not just basal.

Hi Lucy, apologies I meant "since I started testing". But I do tear sometimes when I see the bad numbers.

Thanks for the calculator! I see what you mean about a framework. Have a question though: how do you go about measuring the weight of your carbs/ food when you eat? Do you actually weigh e.g. your meat with a weighing scale? If you eat out, do you do the same?