The early days: LADA / T1.5

[Sanober]

Do LADAs have a rougher deal than T1s in the furst year or am I the only one in this frustrating situation?

Once on insulin in December the difference was amazing. I was on small fixed bolus amounts with morning basal shot.

I started going high randomly and was in a messy situation of trying to.do 1:10 ratio.( having not been on. DAFNE) then doing correction doses and generally swinging from glucose levels from 8-19 and dropping to 4-8. I was struggling to do my job and was experiencing nausea, dizziness, blurry eyes funnily enough a bit like the pre insulin days.

Colleages and managers started to ask if i was ok seemingly i looked pale and disoriented.

Anyway after 3 weeks. The DN decided it was ba ck to the drawing board. She upped bot h basal and bolus and basal was now fixed to meals . I felt amazing for a week, readings were about 4-8/9 even my morning readings were more 7s than 9/10.....i had an immensley productive week but i did notuce i felt weird when slipping into 6 and below (this has always been the case).

So DN said pare back the basal by 1 unit. Two days in now my bolus doesn't seem.to be enough and am back to getting highs and feeling horrid

It's frustrating to say the least...any one else here T1 and T1.5 care to share their early days stories?

 

[Sanober]

Incidently I was 13.8 an hour ago and took a unit (experiment and am about to eat so.didnt want to put too much in before dinner) plus I really dont know too much about taking insulin in between meals) .I'm now 13.6 - thought 1 u dropped you down 3 points on the glucose?

 

[pjw]

Hi

I am type 1.5 LADA.I had the same trouble as you till the dns change me to novomix 30 Insulin 20mg three times a day now is all ok my bg are about 6.6 to 10.00.
As i AM told TYPE 1.5 is a adult type of and is near to type 1 then type 2 and some times hard to keep in check but it took them 3 years to find out i am type 1.5 . You have to google type 1.5 thear is a lot of info on the web.

 

[Sanober]

Thanks pjw

It's a right pain, it really is. I will need to look into this Novomix 30 stuff. Never heard of it. I seem a bit better in the last 4 days now.

Wow, 3 years to find out? I was lucky then, it took 1 year for me, but still went through months of feeling ill.

Believe me, I have googled Type 1.5 to the nth degree, I always feel it's better reading from other T1.5s and their experiences

Thanks again.

 

[Paulaah]

Hi Sanober,

So much of what you've said rings true to me. A question first....diagnosed last February so just passed the 1st year anniversary. I was told I was type 1 due to gad test, but my DSN kept referring to me as "weird and wonderful" - not an entirely helpful description. As I was 39 at the time, does that mean I'm automatically type 1.5? Was my DSN talking to me in "Janet and John" language and really she meant type 1.5. Soooooo patronising, if so. If she'd said that I would have googled it a year ago. as suggested on this thread. I've done that now! I just thought I was type 1. End of! But that does explain a few things...

Here are my observations about how it's been for me:

1) I'm incredibly insulin sensitive and incredibly carb sensitive. Eg if I take a bit too much (even 0.5 unit) it can cause a hypo. But on the other hand, if I don't take quite enough eg. Round down by 0.3, I can end up with a bg of 10 at next reading! This makes guessing carbs regularly out of the question. I weigh absolutely everything. Even slices of bread as they can vary in weight so much in the same loaf. If I eat out I use carbs and cals and DAFNE app and it gets me by. But no way could I guess every meal. I'd be out of control far too easily.

2) I get the same symptoms as you when I'm coming into range. Even now, it's as though my body is much more comfortable with higher sugars. This morning I went to sainsburys, tested before I went - 8.9, so knew I was safe to drive. Walking round the supermarket I felt drunk, spaced out, blurry. Got home, tried to focus whilst I was chopping salad for lunch. Tested before lunch and I was 6.6. Really happy with reading, but I felt so weird. So I agree with you that it's difficult to do normal things sometimes when you feel like that.

Hope I'm not boring you :silent: :lol:

3) I can have periods of stability where it all ticks along nicely, and then for no apparent reason it all goes out of the window. Basal requirements change and so do ratios. This happened last week and I posted on here asking for a bit of advice. I just about got it sorted out for Easter weekend. Rather than it being a progressive deterioration, I can sometimes need more insulin, and then a few weeks later need less. Because I hate being out of control, it drives me mad and it's all I can think about. My husband is a good listener :lol:

A couple more things.....

I notice on your profile you enjoy fitness. I enjoy walking, but I haven't found a way to manage it yet. If I take my normal dose I go too low. If I knock half a unit of (as above) I swing the other way and the exercise does not knock off the mmols. How do you manage that aspect?

I was on Novomix 30 when first diagnosed and got excellent control. However, because it's a mixed insulin - short, intermediary and long acting, once it's in you it's in, and I found I was "feeding" the insulin. If you enjoy a varied diet - a low carb lunch one day and a bit more the next, it's really difficult to work with. I ended up having no life whatsoever and being a total slave to regimented mealtimes otherwise I would hypo. As you know, on basal/bolus your basal holds you steady when you delay lunch or have a late supper. With a mixed insulin, the whole lot is still racing round continuing to reduce your bs. So you are living in fear of a hypo was you approach every mealtime. I know everyone's different but it wasn't for me.

Hope that wasn't too long and drawn out. Would look forward to hearing any more thoughts from you or any other "weird and wonderfuls"!!

 

[smidge]

Hey Guys!

All I can say is Snap! Sanober and I have had many chats about the issues of LADA.

I'm nearly three years in now, two of them on insulin. I am very, very carb sensitive - even a sniff of sugar sends my BG soaring. Starch carb is almost as bad. The swings from high to low and vice versa are wild. Seriously, 1 jelly baby will correct a 3.4 into the mid 5s and beyond. Half a Rich Tea biscuit can take me from mid 6 into double figures - mad :crazy: There seems to be no good carbs for me. Polyols raise my BG similarly to sugar. Even cauliflower and salad need to be jabbed for! On the other hand, I am generally very insulin sensitive as well - half a unit out and I'm all over the place. I could really do with quarter unit adjustments. I get my basal right and sort out my bolus ratios and it's good for a few weeks and then off I go again. This week, I am struggling to keep my BG down - 10 days ago I was struggling to avoid hypos. In a week or so it will go back the other way. I have learnt to cope with it and not stress too much. It worries me when I'm in a 'going high' patch - I worry about the damage it's doing - but I adjust my ratios and basal dose if i think it's necessary, and carry on until it starts reversing - I then adjust them back down again and eat the jelly babies as necessary.

I don't have any good advice to give you on this because I really haven't spotted a pattern yet - it seems random. All I do is work out a dose that works at any given time and correct it if I'm wrong. I do keep carbs low - I think that helps to stabilise things and give me a fighting chance. My reasoning is that the lower the insulin doses you are on the less damage I'm going to do getting it wrong :lol: In my high weeks I work to a ratio of 1:10 or 1:11. In my low weeks I work to 1:8 or 1:9. I then correct with an extra unit or a jelly baby as required! These days, I'm pretty good at getting the dose accurate enough to keep me within a reasonable range - high days that remain in single figures and low days that don't fall below 3.4 - and most of the time I'm somewhere between 5 and 9. But that's taken a lot of patience, practice and learning to get a feel for how my body is likely to react at a given time. You'll get there in the end. I don't think control of LADA is ever going to be perfect, but you will get better at it and learn to live with the inconsistencies.

I often wonder if LADA is actually a different form of diabetes altogether to Type 1 and they just haven't discovered it yet.

Take care.

Smidge

 

[Sanober]

Hi Sanober,

2) I get the same symptoms as you when I'm coming into range. Even now, it's as though my body is much more comfortable with higher sugars. This morning I went to sainsburys, tested before I went - 8.9, so knew I was safe to drive. Walking round the supermarket I felt drunk, spaced out, blurry. Got home, tried to focus whilst I was chopping salad for lunch. Tested before lunch and I was 6.6. Really happy with reading, but I felt so weird. So I agree with you that it's difficult to do normal things sometimes when you feel like that.

Hope I'm not boring you :silent: :lol:

3) I can have periods of stability where it all ticks along nicely, and then for no apparent reason it all goes out of the window. Basal requirements change and so do ratios. This happened last week and I posted on here asking for a bit of advice. I just about got it sorted out for Easter weekend. Rather than it being a progressive deterioration, I can sometimes need more insulin, and then a few weeks later need less. Because I hate being out of control, it drives me mad and it's all I can think about. My husband is a good listener :lol:

A couple more things.....

I notice on your profile you enjoy fitness. I enjoy walking, but I haven't found a way to manage it yet. If I take my normal dose I go too low. If I knock half a unit of (as above) I swing the other way and the exercise does not knock off the mmols. How do you manage that aspect?

quote]

I'm so glad I'm not alone about feeling weird even with decent numbers. I am at my happiest around 7 - even my drop is only down 3 points say from 8 to 5 I feel odd and almost hypo.

I've tentively re-started my fitness this year. I had to give up through Aug - Dec pretty much following an op then this blasted Diabetes troubles.

The DN suggested dropping my insulin per meal by 1unit if I plan to exercise that day - I can't do it, it's as if my body needs every drop of insulin I put in to meet my carb intake...So if my glucose is at 8 before exercise then I'm ok to get just get into it and can finish around 5-6. If I'm 5-6 at the start then I tend to take half a biscuit beforehand.

(Like Smidge even a full biscuit can cause several points increase in my glucose without the help of short acting insulin).

However, there have been odd occasions during exercise I've felt odd, so I just step away from the class and test and shove a jelly baby in me if I'm in the 5s and say I'm only a third or half way through the fitness class.
Like Smidge, literally 1 jelly baby is enough to pull me out of a hypo *my DN suggested 4 Glucose tabs!!! I ignored that advice. Thankfully my sis is a fitness instructor so I tend to go to her classes and she has predicted many a dip before I was even aware there was a problem! Apparently I go pale, zone out, and my left leg starts to behave like it's going limp :***:

I've just started running again...can't really test during it (need to figure how to store my meter etc on me). So I just make sure I have enough jelly babies for now and I test pretty much right before I start and then soon after finishing. Only working up to 3miles to be honest. So baby steps.

p.s I agree with Smidge that T1.5 definitely has some peculiar aspects to it.

 

[Ali H]

Finally booked to see an endo so hopefully I will have some answers soon as to whether I belong in your club. Reading this I really hope not.

Ali

 

[Sanober]

Hi there Ali

Glad you've got an appointment. The Endo of all people should listen to you and get that C-pep and Anti-GAD done!

Yeh, I'm learning that it's not easy being this way but so glad to know there's others in this 'club'.

Good luck

x

 

[Ali H]

Thank you, 3 months on the NHS to see the local guy or 1 week to go private 45 miles away. Sheesh. Still, if I get the tests sorted and find some answers and a regime soon then it will be worth it.

Will update once things happen.

Ali x

 

[Christinelh]

I agree never really stablevwhen my BG is high over 8.0 I feel sleepy and unable to concentrate etc... Similar to a hypo would bevwhen BG low no warning every evening is a nightmare my control has to be tightbas feel so ill team are superb I hop a pump will be appropriate some day I have posted about being a games maker in the Paraolympics doingban evening shift this would severly affect the diabetes evenings are hellish after main evening meal just want bed just watching what I eat all the time I live on my own as well and family do not give support.
I get down but the hospital has a specialist physcologist who deals with diabetic patients this is a real help I agree think there should be a more specific treatment for LADA

 

[Ali H]

Describes how I feel to a T. I am still at 11.8 three hours after I last ate, sigh.

Ali

 

[Sanober]

I'm so glad you mentioned that Christine.

I can feel high but when I test I may be just 8 plus.

I think that T1.5 definitely needs further investigation rather than defining it just as a slow onset of type 1. I still think I'm odd in that my slow onset seems pretty fast! How can I go from 1.5 u for a breakfast to 5 - 6 units just a few months later...? Or is this normal for T1.5?

Good luck to Ali. Such a shame you're being messed about with by the NHS.

Despite the experiences I've had, overall the NHS has been pretty good when I pushed them, mostly they were willing to do what I asked. I just hated the waiting from test to result to consultant to test etc

 

[Ali H]

Just baffled now, 11.8 near bedtime to an all time fasting low of 5.7. How? I haven't any meds to drop a high so how has it dropped so far overnight?

Ali

 

[smidge]

Hey Ali!

Just baffled now, 11.8 near bedtime to an all time fasting low of 5.7. How? I haven't any meds to drop a high so how has it dropped so far overnight?

Ali

That happens to me sometimes. I can go a few days having my fasting BG high (8.0 today) and then it'll suddenly fall and I'll get a few days of 5s and the occasional 4s. I've looked at whether slow-release carb make an impact, high fat, night time figure, what time I eat, what time I take my basal insulin. I cannot find a definite pattern. I've even tried testing every 2 hours through the night to see if I can pinpoint at what time any rise or fall takes place. There seems to be no pattern. I can increase my basal a bit and bring the fasting level down, but then I am in danger of it dropping too low if it happens to feel like it :roll: The only constant is that a glass of wine will drop me several points overnight.

Smidge

 

[smidge]

Hey Sanober!

I think that T1.5 definitely needs further investigation rather than defining it just as a slow onset of type 1. I still think I'm odd in that my slow onset seems pretty fast! How can I go from 1.5 u for a breakfast to 5 - 6 units just a few months later...? Or is this normal for T1.5?

That's not been my experience of it. Mine has been a slow decline with a slow increase in insulin requirement. There are times when my requirements go from 1.5 to cover a breakfast of 15g carb to 2 and then up to 2.5, just to fall back to 1.5 again a few days later. My DSN thinks that I might have some insulin resistance in the mornings that comes and goes. I'm not convinced! I do think I need more insulin per g of carb if i start off higher. I mean, 1 unit of Apidra if I start in the 4s will drop me by about 3.5, but if I start at 8, the same unit will only drop me by about 2, so i don't just need to add a correction amount to bring me back to my target, I have to use extra for the meal as well. e.g Starting at 4.4, I'd need 1.5 units Apidra for 15g carb (1:10), but starting at 8, I'd need more like 2 units Apidra to cover the 15g carb (1:8) plus an additional 1 unit to reduce the level to target. So maybe 3 units total for the same meal. It's not consistent though.

Smidge

 

[LucySW]

Hey Guys!

I do keep carbs low - I think that helps to stabilise things and give me a fighting chance. My reasoning is that the lower the insulin doses you are on the less damage I'm going to do getting it wrong

Smidge

That sounds like the key to me - and also Dr Bernstein's point. Keeping carbs to 50 or 40 or 30g a day factors down the range of insulin doses and therefore the scope for highs and lows.

Smudge - not tried insulin yet, but approaching the idea


I'm LADA - 55, BMI 23, bike to work 13km every day. Diagnosed T2 mid-June 2014, then after positive GAD antibody test pdiagnosed T1 two weeks later. Initial HbA1c 117/12.9%, fasting BS 17. After 6 weeks on LCHF, HbA1c down to 78 / 9.3% !! Average fasting a.m. BS currently 6.6. Metformin 2g/day

 

[Aprilb1967]

Hi there - I am new here so trying to find things out. I have been reading the messages on the forum and
Would like to know what some things mean:
Please could someone tell me what LADA is?
Also what is type 1.5?
Many thanks.


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