Continuing diet or start insulin?

[Cornelio]

Hi all, recently I was in the UK, was thinking about the ascending scores of the Hba1c and the fasting bloodsugar, and found at once the English diabetessite with also a group specific for LADA. I was very happy with this an found a lot of interesting information. Since 2006 I have LADA, first with low carb diet correctable, Hba1c 6, now around 7, in combination with very strict lifestyle. I use sometimes a Freestyle 2 and see the ascension last months between 9am till night (15 hours) with an average around 9 mmol. In the night an average of 6.8 mmol. I am thinking about making a start with insulin but don’t know if this is a good choice, also with my work in Asia (I am Dutch) for twice a year for 6 weeks. I was for years by an endocrinologist, but given the stability till two years ago, he advised to stop this. I can go to the familydoctor and ask for referral again, but first I am very interested in your visions or advice. Hope to hear from you.

 

[Antje77]

Hi @Cornelio , welcome to the forum.

I am thinking about making a start with insulin but don’t know if this is a good choice, also with my work in Asia (I am Dutch) for twice a year for 6 weeks.

To start or not start insulin is really something between you and your endo or internist, but working in Asia for 6 weeks at a time is not an issue at all on insulin.
It's much easier in the Netherlands to get a 3 month supply and more if needed than it is in the UK, so if you start on insulin you can simply bring your 6 week supply.

Like you, I tend to eat low carb, but I'm very happy my insulin gives me room for choices in food, and the ability to correct if I rise for whatever reason. (Unlike you, I still need highish doses of insulin even when eating very little carbs, so not much of a choice for me but that's a different story.)

If it were me, I'd ask for a new referral to an endo/internist and go from there.
If you do start insulin (provided you start both basal and bolus) you'll get your Libre sensors funded as well!
Do you know what your latest hba1c is?

And may I ask how you got your LADA diagnosis? Just out of interest, my own road to getting this diagnosis was unusual as well (but very different from yours!), going 17 years with a LADA diagnosis without needing insulin is pretty unusual.

 

[Cornelio]

Thank you for this clear answer. Nice to hear from you that also higher doses insulin doesn’t mean that obsessively on low carb is the only solution.

My last Hba1c was 50 in hospital in nov 2020. Recently 49 on Freestyle 2, but don’t think this is correct in relation to the high average of 8.1 from the last 3 months.

My LADA was diagnosed in 2006 by an internist/endocrinologist after a positive GAD. I have no more information about this, but still know that there were 3 tests positive, who pointed in that direction with a certainty of 99 percent. In 2006 he told me that within two year I should be insulin-dependent. Till 2021, the end of traject with him, he continued telling me that because of my sometimes low score, 4-6, early in the morning, it was too risky to use insulin in connection with hypo’s.

I just read an article in which an Hba1c should have to be around 40 or 35, and scores over the day under 9 or 10 with an average of 6. Are this scores for very strict living persons and for Lada achievable?

 

[Antje77]

I just read an article in which an Hba1c should have to be around 40 or 35, and scores over the day under 9 or 10 with an average of 6. Are this scores for very strict living persons and for Lada achievable?

Prediabetes starts at 42, so a hba1c of 35 or 40 is solidly in the non diabetic zone.
For T1's (Which includes LADA's) on insulin, a hba1c below 53 is considered great control.

Whether lower is achievable or even desirable depends on a lot of factors. Managing diabetes is a marathon, whatever your chosen approach is should be sustainable for a long time without it causing burn-out or depression.
No two diabetics are the same when it comes to predictability of blood glucose. So for some, such a low hba1c is achievable and healthy, for others it means countless hypo's and a lot of stress, which isn't healthy at all!

 

[ert]

Hi all, recently I was in the UK, was thinking about the ascending scores of the Hba1c and the fasting bloodsugar, and found at once the English diabetessite with also a group specific for LADA. I was very happy with this an found a lot of interesting information. Since 2006 I have LADA, first with low carb diet correctable, Hba1c 6, now around 7, in combination with very strict lifestyle. I use sometimes a Freestyle 2 and see the ascension last months between 9am till night (15 hours) with an average around 9 mmol. In the night an average of 6.8 mmol. I am thinking about making a start with insulin but don’t know if this is a good choice, also with my work in Asia (I am Dutch) for twice a year for 6 weeks. I was for years by an endocrinologist, but given the stability till two years ago, he advised to stop this. I can go to the familydoctor and ask for referral again, but first I am very interested in your visions or advice. Hope to hear from you.

Have you had diabetes since 2006 and did not deteriorate onto insulin which is a diagnosis requirement used to diagnose type 1 or LADA? You should ask for a c-peptide test to see how much insulin your body is producing and question the diagnosis as you may not need insulin.

 

[Cornelio]

Thank for the answers and questions and advice, a very valuable forum.
Question who arise is the correctness of the diagnosis. Is 16 years or longer possible for LADA? Or is it a special form? At the other side it is clear that my scores are too high compared to healthy people.
A good idea to ask a c-peptide test, hope they are open to this.
Thanks also for advice in choice for diet or insulin about sustainability for a long time and the difference between diabetics.
Other question around traveling Asia, are there no problems near the border with the free style and X-ray and insulin?

 

[ert]

Thank for the answers and questions and advice, a very valuable forum.
Question who arise is the correctness of the diagnosis. Is 16 years or longer possible for LADA? Or is it a special form? At the other side it is clear that my scores are too high compared to healthy people.
A good idea to ask a c-peptide test, hope they are open to this.
Thanks also for advice in choice for diet or insulin about sustainability for a long time and the difference between diabetics.
Other question around traveling Asia, are there no problems near the border with the free style and X-ray and insulin?

Having a c-peptide test would be the best way to establish if you need insulin. Here are some interesting articles on how they have been using it as diagnosis tool.
https://www.exeter.ac.uk/news/research/title_707155_en.html
https://www.nationalhealthexecutive.com/articles/scotland-type-1-diabetes-tests
https://www.exeterlaboratory.com/test/c-peptide-plasma/

 

[Cornelio]

Thanks for valuable advice. I have ordered a c-peptide test. What time of day is the best for blooddraw, fasting or just after meal? And also I have made an appointment with a specialized Type 1 clinic, also for Lada.

 

[Cornelio]

How is this possible? 16 Years diagnosis LADA and see now for the first time the.results of the advised C-peptide test. 0.33 nmol/L, so 330 pmol/L by fasting blood. Info of Exeter lab interprets this score as substantial endogenous insulin secretion and If more than 5 years from diagnosis is Type I unlikely. Consider alternative diagnosis.
Very strange, but interesting. Over some weeks I have an appointment with an internist/endocrinologist. Ideas what this result can mean?

 

[Cornelio]

How is this possible? 16 Years diagnosis LADA and see now for the first time the.results of the advised C-peptide test. 0.33 nmol/L, so 330 pmol/L by fasting blood. Info of Exeter lab interprets this score as substantial endogenous insulin secretion and If more than 5 years from diagnosis is Type I unlikely. Consider alternative diagnosis.
Very strange, but interesting. Over some weeks I have an appointment with an internist/endocrinologist. Ideas what this result can mean?

 

[EllieM]

How is this possible? 16 Years diagnosis LADA and see now for the first time the.results of the advised C-peptide test. 0.33 nmol/L, so 330 pmol/L by fasting blood. Info of Exeter lab interprets this score as substantial endogenous insulin secretion and If more than 5 years from diagnosis is Type I unlikely. Consider alternative diagnosis.
Very strange, but interesting. Over some weeks I have an appointment with an internist/endocrinologist. Ideas what this result can mean?

Forum rules don't allow us to diagnose but my understanding is that some non T1s can have positive GAD tests, you really need it to be accompanied by declining insulin production.... Did the lab say whether you were at the low or high end of the scale (Dr Google suggests low to me) and do you know how it compares with your result at diagnosis?

So if (and I stress that is an if) you are not T1, there are other possibilities, notably T2, T3c, MODY.... Your endocrinologist needs to do the diagnosis.

I would be very interested to hear what they say. 16 years remission (whether from T1, T2 or something else) is a very impressive result, whatever happens.

Good luck.

 

[Marie 2]

I really don't know. But LADA can be very slow onset. And while you usually need insulin within 3 years of diagnosis, time frames don't really give the whole picture. I didn't go on insulin until 5 years after my blood sugars started going wacky. And I was misdiagnosed early, first as a prediabetic, when my sugars first started going up and then as a type 2 . But they say it can take 8 years plus to lose the ability to completely make insulin in some LADA type1's. Some people think that a low carb diet might protect what beta cells you have longer. 16 years makes you wonder what??????

I have also heard of a few people that tested positive for Gad and didn't seem to develop type 1. More than likely it means type 1 diabetes, but there are also a few other autoimmune conditions that can cause a positive result and not be type 1

But do get the test redone as mistakes are made sometimes.

 

[Cornelio]

Thank you again for ideas and advice. I was lucky with a very quick intake in a specific type 1 center. The internist told me (also) that a total loss of insulin production can last many years. In the coming weeks there will be more investigation, but for now she is thinking about a short working insulin before the meals.

 

[Cornelio]

Hi, last two weeks I started for the first time with insulin, Novorapid. The team advised me to experiment with 1 ml for 20 or 30 gr carbohydrates. What is the purpose? Ambition or strive for a curve as a no-DM or flatten the peaks or other? And is there a vision about how to save the remaining B-cells? Little insulin or working to a low Hba1c with more insulin? Hope to hear from you.

 

[Marie 2]

Most of the current thought is taking insulin early will help with preserving your Beta cells longer. You Bg levels don't seem that bad and you are obviously still making some insulin which is still working to drop your levels some.

Using insulin is to help stop your BG levels from going too high. High BG levels above 10 are thought to start causing damage. Plus there is always the danger when you are a type 1 that at some point you will lack making enough insulin and can develop DKA which can be dangerous fast. High BG levels above 10 can be a sign you are making ketones and that can cause DKA, but high BG levels don't cause DKA, lack of insulin does. Some people seem more sensitive to it than others.

With the start of insulin, you want to play it safe at first, go easy. You don't want to go too low. So at first it's more learning how and what doses you need. Generally peaks and valleys are not as good as rolling hills. You want to keep your levels within certain ranges. Your endo can give you guidance on what numbers to aim for. Do not go too low, it's better to aim for higher numbers until you know dosing better. And ALWAYS keep a hypo treatment like glucose tabs with you wherever you go and by the bed,

It's possible you might even want a pen that does half unit doses especially if you low carb.

 

[Cornelio]

Thanks for your clear answer and advices, Marie 2. Difficult for me to start easy, but better. I heard about different types of carbohydrates and use insulin before or after. Is this for the experienced user or also to use at the start.

 

[Marie 2]

There is a difference in carbs. Fruit juice for instance is great for lows in a small amount. It hits fast, while whole grain wheat will digest a little more slowly, but not slow. The biggest difference is the fats you eat with the carbs. High fat slows down carb digestion.

So high fat can make the carbs hit over hours, especially high fat combined with high carbs. You can eat what you want, I do, but you just have to learn to dose for it. Timing and amount.

 

[Cornelio]

Very interesting. Is there a book with up to date information about the carbs, fats and interactions? Advice?

 

[Marie 2]

I’m not sure if there is a specific book on that topic. A lot of that is going to be learning from your own experience. We can all vary in how stuff affects us, especially in our digestion speed. Plus the fact you still make some insulin. But the books that are the most recommended for type 1’s are.

Think Like a Pancreas by Gary Scheiner
Pumping Insulin by John Walsh
Sugar Surfing by Stephen Ponder

 

[Cornelio]

I’m not sure if there is a specific book on that topic. A lot of that is going to be learning from your own experience. We can all vary in how stuff affects us, especially in our digestion speed. Plus the fact you still make some insulin. But the books that are the most recommended for type 1’s are.

Think Like a Pancreas by Gary Scheiner
Pumping Insulin by John Walsh
Sugar Surfing by Stephen Ponder

Sorry for my late reaction. Thanks for the recommandation of the books. In the last weeks I have my first experience with (rapid working) insulin and see sometimes still scores of 15, but I hope it’s a problem of the non experienced.