Looks Like diagnosis is 1.5/LADA- any advice/questions I should need to ask?

[nybrid]

Hi one and all,

About 5 weeks ago I was diagnosed with possible type "1.5"(still not 100% sure what that means but have read forum!!) diabetes with level 23 bg after fasting test at surgery.

I have followed info on this site and dramatically cut carbs and monitored my bg up to 6 times a time.

My average bg is now 6.4 and I was really happy that I have also lost weight(1.5 stone). After fasting I am regularly around approx. 5bg and only spike to about 7bg

3 weeks ago I had the hbaic 1 test and it came back at level 7 which my specialist said was very good considering this would include the last 3 months pre diagnosis.

she reckons I could reduce this to 6 when I have a re-test in May.

Today I chased up the hospital as I wanted a definitive diagnosis as all blood results should have been in by now. My specialist phoned back and said the anti body test came back positive for type 1 and I would see her in 2 months time. Eventually I would need to go onto insulin if my levels increased and get out of control.

Therefore can anyone give me advise on what to expect from now on ie:-

can I have hypos from now on even though the specialist said higher readings are more likely

what should I eat pre going to the gym

I have key tone sticks and was told I only need to test if my bg hits 13??

does this mean I have the lada diabetes?

I am 51 years old and there is no family history except for my daughter having coeliac disease

should I ask if they tested how much insulin I am producing and what time scale I have before I may need insulin injections?

thank you

 

[Heathenlass]

Hi there
At least you have a definite diagnosis ! To answer some of your questions :-


No, you are unlikely to experience hypos as you are not currently on insulin. Having said that, some people experience " false hypos " where they feel hypo symptoms but their blood glucose is higher than the figure you expect hypos to happen. This is because blood glucose levels have been running high for a long time, so when they are lowered, the brain sends hypo signals. From what you have said, I think this is unlikely to happen to you, but it's good to be aware and hypos will be explained to you in depth when you are prescribed insulin.

Insulin - there is no way of knowing how much you are producing at this stage, or how long you will continue to produce any . Recent research shos that many Type 1's still produce some insulin erratically, but not in sufficient amounts for it to be useful.

Ketone sticks are only used if your BG goes above a given level, and you are feeling unwell. An explanation for these is given here : http://www.diabetes.co.uk/diabetes-complications/diabetic-ketoacidosis.html

I'm tagging other LADA' s who will be helpful for you @Spiker @LucySW @smidge and there are many others who can offer their experiences and advice

Signy

 

[nybrid]

Thanks for the reply and forward to others.
I think I am on the right track information wise but need assurance and extra information pre a visit to the specialist
ps nice photo

 

[Heathenlass]

Thanks for the reply and forward to others.
I think I am on the right track information wise but need assurance and extra information pre a visit to the specialist
ps nice photo

You are welcome There's only general stuff I can say, because the info is basically the same for Type 1's and LADA to an extent, but I think it's different emotionally when you have grown up with it .

That pic- thank you it's not the avatar that I hanker after- a large Brunnhilde singing to a huge wedge of cheese

Signy

 

[Daibell]

Hi. There is the c-peptide test to measure insulin production levels. I had mine done privately as my surgery just labeled me T2 with no tests. My c-peptide showed low insulin production which I suspected. No one can tell how rapidly uoir blood suagr will rise over time as LADA comes on a at wildly varying rates. AS others have said you won't normally have hypos without insulin or Gliclazide tablets. Ketones are normally only a problem leading to ketoacidosis if you are low-carbing and burning fat and you blood sugar is above the teens. Yes, a meter might indicate ketone production but if your blood sugar is not above the teens then you shouldn't need to worry unless feeling unwell. Do come back with any more questions

 

[Spiker]

Hi and welcome. Sounds like you are handling this well and doing very well!

Your GADA (antibody) test combined with your age and current lack of need for injected insulin strongly suggest LADA though a C peptide test would be an additional confirmation.

Your great work on cutting carbs and frequent testing puts you in a great position to maintain your own insulin function for as long as possible.

There's a debate about whether T1 diabetics (including T1.5 / LADA) who produce insulin should or should not supplement their own insulin with injected insulin. That's probably a discussion to have later as this is all so new to you.

 

[Ian DP]

Hi nybrid
I was diagnosed LADA 15 months ago aged 58, through a high GAD test. My consultant said I was a T1.5 / LADA. But my hospital notes do not mention this at all, just that I am a T1 in the honeymoon period. I believe the medical profession only recognise two types of diabetes, T1 and T2. We have, in effect, a slowly progressing T1 condition.

My brother has celiac, but no other diabeetes in the family at all. A recent study 'says that anyone who has an autoimmune disorder likely had celiac or non-celiac gluten sensitivity first, and that the latter can be present for 30 years before it becomes a significant problem.'..... So it does seem there is a strong link between the two.

I would not worry about hypos. My lowest ever I have recorded has been 3.2. I felt a little light headed so tested. I was worried at the time, but Dr said not to worry about it, some non diabetics can go into the 2s. As said, You only have to worry / test for keytones if your BG levels are well into double figures.
With fastings at 5 and spikes at 7, you don't, in my opinion, need insulin yet. But if you start to creep up much higher, in my opinion you should ask for insulin. I have had an insulin pen for over a year now, it is there in case I need it, I have not needed it yet. Likely I will need it when I am sick (virus or something) I have already seen my BG levels rise when this happens.
I try to keep my fastings under 5 and 2 hours after food to,under 6. I have been doing this for the last 9 months, and so far it has kept my BG levels constant. I believe (many others don't) that beta cells destruct when BG levels are above 'normal' bg levels. So I follow Dr Bernsteins 'normalised' blood sugar levels solution..... Following his solution has worked for me for the last 9 months.

Keeping the carbs to a minimum will without any doubt help you maintain lower BG levels without the need for insulin for a much longer period of time than if you had higher carbs...... The great unknown is for how long it will work for. Both of us will need insulin at some point in time, maybe weeks, maybe months, maybe years. There is a good chance I will be on insulin this year, but I will stick to low carbs and keep on following Dr bernsteins solution because I know, even on insulin, that it will help me retain as many beta cells as possible, and likely in 10 years time I will still be LADA, thus still producing some insulin myself, thus needing less insulin injections than a full T1.

 

[Spiker]

I believe (many others don't) that beta cells destruct when BG levels are above 'normal' bg levels. So I follow Dr Bernsteins 'normalised' blood sugar levels solution.....

Great post Ian.

I don't think there is much doubt that elevated BG causes beta cell death. There is varying evidence about what level of high BG the cell death starts, but none of the levels are above what would be typical blood sugars for diabetics who the NHS would consider reasonably well managed.

Where there is a lot less certainty is whether high BG provokes or worsens the auto immune attack. I think Dr Bernstein holds that view but I haven't been able to find solid evidence for it.

But I think that we can be reasonably confident that high BG accelerates beta cell death, directly, through glucose toxicity. This is an established mechanism for the progression of T2 diabetes into an insulin-dependent state. There's no reason to expect the same is not true in T1 and LADA.

 

[nybrid]

Hi. There is the c-peptide test to measure insulin production levels. I had mine done privately as my surgery just labeled me T2 with no tests. My c-peptide showed low insulin production which I suspected. No one can tell how rapidly uoir blood suagr will rise over time as LADA comes on a at wildly varying rates. AS others have said you won't normally have hypos without insulin or Gliclazide tablets. Ketones are normally only a problem leading to ketoacidosis if you are low-carbing and burning fat and you blood sugar is above the teens. Yes, a meter might indicate ketone production but if your blood sugar is not above the teens then you shouldn't need to worry unless feeling unwell. Do come back with any more questions

Thanks very much Daibell very reassuring reply

 

[nybrid]

Hi and welcome. Sounds like you are handling this well and doing very well!

Your GADA (antibody) test combined with your age and current lack of need for injected insulin strongly suggest LADA though a C peptide test would be an additional confirmation.

Your great work on cutting carbs and frequent testing puts you in a great position to maintain your own insulin function for as long as possible.

There's a debate about whether T1 diabetics (including T1.5 / LADA) who produce insulin should or should not supplement their own insulin with injected insulin. That's probably a discussion to have later as this is all so new to you.

Cheers Spiker excellent info thanks

 

[nybrid]

Hi nybrid
I was diagnosed LADA 15 months ago aged 58, through a high GAD test. My consultant said I was a T1.5 / LADA. But my hospital notes do not mention this at all, just that I am a T1 in the honeymoon period. I believe the medical profession only recognise two types of diabetes, T1 and T2. We have, in effect, a slowly progressing T1 condition.

My brother has celiac, but no other diabeetes in the family at all. A recent study 'says that anyone who has an autoimmune disorder likely had celiac or non-celiac gluten sensitivity first, and that the latter can be present for 30 years before it becomes a significant problem.'..... So it does seem there is a strong link between the two.

I would not worry about hypos. My lowest ever I have recorded has been 3.2. I felt a little light headed so tested. I was worried at the time, but Dr said not to worry about it, some non diabetics can go into the 2s. As said, You only have to worry / test for keytones if your BG levels are well into double figures.
With fastings at 5 and spikes at 7, you don't, in my opinion, need insulin yet. But if you start to creep up much higher, in my opinion you should ask for insulin. I have had an insulin pen for over a year now, it is there in case I need it, I have not needed it yet. Likely I will need it when I am sick (virus or something) I have already seen my BG levels rise when this happens.
I try to keep my fastings under 5 and 2 hours after food to,under 6. I have been doing this for the last 9 months, and so far it has kept my BG levels constant. I believe (many others don't) that beta cells destruct when BG levels are above 'normal' bg levels. So I follow Dr Bernsteins 'normalised' blood sugar levels solution..... Following his solution has worked for me for the last 9 months.

Keeping the carbs to a minimum will without any doubt help you maintain lower BG levels without the need for insulin for a much longer period of time than if you had higher carbs...... The great unknown is for how long it will work for. Both of us will need insulin at some point in time, maybe weeks, maybe months, maybe years. There is a good chance I will be on insulin this year, but I will stick to low carbs and keep on following Dr bernsteins solution because I know, even on insulin, that it will help me retain as many beta cells as possible, and likely in 10 years time I will still be LADA, thus still producing some insulin myself, thus needing less insulin injections than a full T1.

Thanks Ian. Very reassuring reply. All seems logical. I will keep low carbing and give myself the best chance to stay off insulin longer. Cheers

 

[Yelekreb]

As a LADA diagnosed at 47, I felt much better on Insulin, though I was massively GAD positive. I like insulin nearly as much as beer now!

 

[nybrid]

cheers Yelekreb
I have not had 1 beer since diagnosis but might try one on my birthday
I have tried a glass of red wine and my readings were fine
thanks for the reply

 

[Ian DP]

I find one beer with food slightly lowers my BG, more than one raises them. More than one red one lowers my BG, the more red wine the lower my BG level!!

 

[nybrid]

Yes I've found a couple of red wines have lowered my BG. (Never drank wine in the past)
I go out once a month with my relatives and miss having a good pint so I'll try one with food.
thanks

 

[LucySW]

Hi Nybrid!

You're doing all the right things already. As Spiker and Ian say, yes it does sound as if you are LADA. Fasting BG of 5.0 and spikes only up to 7.0 are excellent. If you keep low carbing, testing, recording it and looking at the trends, you'll probably continue to do very well.

You could either stick with no insulin for the moment, while you have these excellent levels, or you could possibly try asking to take a low dose of insulin to support your own insulin production. Doctors aren't always supportive of this. I asked to take basal insulin early, on the grounds that it would support my own insulin production, and took 4 units a day for six months while I was LCHF-ing. I'm not sure how far, if at all, it helped, but it wasn't enough: from January 2015 I went on mealtime insulin as well (I take 3u Insulatard twice a day as basal, and usually about 2u Novorapid with each meal). That means I can get rid of the spikes altogether, which means a much improved average BG and, presumably, A1c.

I wanted to do that persuaded by Dr Bernstein of the damage done by high blood sugars. As you'll know if you read him, his basic view is that truly normal-level blood sugars (4.8 to 5.6) are the best way to prevent and to some extent reverse the damage done in our bodies by high BG. So I wanted not to acquire any more damage, and to reverse/slow down any damage I had incurred. (I am aware of lots of low-level things. They don't come up on medical radar, but I'm still aware of them.) My story is here and here.

LADA hasn't been recognized for long enough for there to be a standard way of dealing with it. In some countries (including Denmark, where I am), insulin is given as soon as someone is diagnosed Type 1, which includes LADA. In others - it seems in the UK - they tend to make you wait till your beta cells have expired. That seems to me silly, because it will mean higher insulin doses later on, and it's good to keep insulin doses down.

Those are the main issues tho.

Before exercising: trial and error! Many people find their BG goes up initially when they exercise, before the nice beneficial drop. Mine does. So I can exercise any time, though I may have to check 2 hrs later. But as you're not taking exogenous insulin, you shouldn't have to worry about sudden low BG.

Apps: these are essential for recording and monitoring your BG, which will give you the knowledge to control your BG better. I use mysugr, which has excellent Standard Deviation measurements (which let you evaluate the consistency of your BG levels, VERY important), and also DiaConnect, which I find even more useful, especially the graphs, but it doesn't routinely do SD for you. So I use both. Very anal of me.

Well done for getting into it and taking control of everything.

 

[nybrid]

Hi Lucy
Thanks for the detailed reply
Very interesting
I will check out a couple of points you've made as I'm sure they will help
Thanks again
Mike