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LADA/1.5 so confused??

Yeh I'm not sure what effect the weather has, if any.

My levels were always between 4 and 7 mmol (apart from fasting) and now they're sort of 5-8 mmol with the odd 9mmol but only when I've ate something bad so they not that bad really I spose...also I'm only on half the maximum dose of Metformin too (500mg twice a day) so I know I'm not insulin dependent yet I'm just thinking of the best way to preserve the cells.... At least by the end of next week I should know roughly how long it might be before I am dependent on insulin so I'm guna be terrified sitting waiting for my results lol it feels like I'm awaiting a life sentence or something!

Glad I got my wedding out of the way last September even though all the stress of the year is what I think caused the diabetes! Hopefully your immune system will chill out on its killing spree at least until uve enjoyed ur day


Diagnosed with GD in 2010, Completely disappeared postpartum. Re-diagnosed December 2012 with type 1.5 diabetes, age 26, BMI 23 currently controlled by only Metformin, 500mg twice a day.
 
Ok so I had the beans on toast..... Small wholegrain bread and 1 reduced sugar reduced salt baked beans snap pot...tested two hours later and got 8.1 mmol.... :-( not good but not catastrophic either I guess...


Diagnosed with GD in 2010, Completely disappeared postpartum. Re-diagnosed December 2012 with type 1.5 diabetes, age 26, BMI 23 currently controlled by only Metformin, 500mg twice a day.
 
There you go, no need to deprive yourself, yeah not the best reading but if u really want it it's not awful either!! No more beans on toast cravings!! Yay!!

I'll confess I had 3/4 of a Krispy Kreme doughnut last week in the evening got an 11 2 hours after and 6 something the morning after. Yeah I 'self harmed' as I call it but once every now and then I can deal with

Xx


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Yeah I did that with the strawberry tart but got an 8.4mmol or something afterwards which, again, wasn't too bad. The last time I got a 10-11mmol was when I ate a cheese savoury sandwich from Greggs and had one of their Iced star biscuits afterwards...oopsie.

I also tested 1 nd a half hrs after i ate 2 nights ago and got a 9.1 mmol after I had roast pork with veg and I NEVER go that high after that meal I'm usually always on about 5.6 mmol so I have NO idea what happened there..... Diet has such a massive effect at our stage I think...I was bein so good but since the end of last month I've really not been as strict...sometimes I'm exhausted with it, it's so hard :-( sometimes I think there's no point as it won't change the outcome and I think sod it and then other times I'm like....I really don't want be on insulin! :-( sometimes I think it would have been easier to get type 1 as a child because at least then you know no different.....


Diagnosed with GD in 2010, Completely disappeared postpartum. Re-diagnosed December 2012 with type 1.5 diabetes, age 26, BMI 23 currently controlled by only Metformin, 500mg twice a day.
 
Update!

So I went to see the diabetic consultant today again for my results and guess what...? NO CHANGE!! So it looks like I will need to remain in limbo land for the foreseeable future :'(

On the other hand though MY HBA1c HAS CAME DOWN FROM 83 TO 45 WHICH MY CONSULTANT SAYS IS PRACTICALLY IN THE NON-DIABETIC RANGE WOOHOO!!!

GAD result still positive, Islet antibody result still negative, insulin production still sitting at the bottom of the normal range.

Had 'the chat' regarding insulin and guess what? He wouldn't prescribe it even if i wanted it as my levels are not high enough he doesn't think it will be beneficial and doesn't want risk of hypos as the dose would be 'negligible'. He is of the opinion that insulin doesn't preserve your beta cells anyway!! Interesting!!!

Also discussed my morning levels always being between 7 and 8 mmol and again he said that he would be worried if it wasn't between those levels as those morning levels are what it means to be diabetic and any lower than that (when not using insulin) would be non-diabetic range! So....interesting appointment but not very informative regarding my disease..he says he is baffled by me, which is nice to know!

Only thing I'm kinda sad about is that I still have to live with the constant fear of deterioration and insulin dependency striking me at any unknown time.... :'(


Diagnosed with GD in 2010, Completely disappeared postpartum. Re-diagnosed December 2012 with type 1.5 diabetes, age 26, BMI 23 currently controlled by only Metformin, 500mg twice a day.
 
Well done on the hba1c, thats great. not sure weather to say congratulations or not on the no change though. Must be very frustrating for you. Can understand the no insulin yet as he told you it would probably cause alot of hypos for you with your current levels. Just be sure to make an urgent appointment should things change as when they do they tend to change very rapidly. All the best.

Sent from my GT-S5360 using DCUK Forum mobile app
 
Hey Elaine - no change is surely a great thing! That your islet antibodies are still negative sounds pretty groovy too

It means you're stable - and that's gotta be good, no?

Did he say what your gad antibody levels were? Had they changed at all?

I understand the frustration of feeling in limbo, but at least you're not deteriorating - chin up chook
 
Hey sunshine, he didn't give me the exact figure, same with the c-peptide but it will come out to me in writing like the last time so I should know soon enough. One weird thing he said though was that the level of GAD antibodies in the blood is not indicative of how fast the disease is progressing it just confirms an autoimmune response..... Didn't ask him to elaborate for fear of being stuck there all say trying to understand endocrinology lol xx


Diagnosed with GD in 2010, Completely disappeared postpartum. Re-diagnosed December 2012 with type 1.5 diabetes, age 26, BMI 23 currently controlled by only Metformin, 500mg twice a day.
 
Oooo, that's really interesting!! I assumed the higher the gads, the more ******** things were! I'm trying to get a c-peptide test but neither GP or consultant will let me have it! Did you ask for it or did they just do it? I'm thinking it must be one of these stupid 'depends where you live' things, which is really annoying, especially as the c-peptide surely has to be the most helpful in telling us what's going on?!
 
They just gave me it. It's harder to request though I know that, coz there wasn't an option for it on the paperwork my DSN had to add it as a footnote... It's probably good for looking at a decrease in insulin production but its not that accurate according to my consultant as there can be other reasons why c-peptide is low ie: cells are blocked by fatty cells etc etc.. But for an all round view I would say it was better than GAD probably...


Diagnosed with GD in 2010, Completely disappeared postpartum. Re-diagnosed December 2012 with type 1.5 diabetes, age 26, BMI 23 currently controlled by only Metformin, 500mg twice a day.
 
Yea, that's what I thought - it's got to be an indication of how our pancreas is doing, even if there are variables... Very frustrating my consultant said no. I'm seeing him in about three weeks though so will ask him again then...
 
Hey Sunshine, Elaine!

c-peptide is a really useful test for differentiating between Type 1/1.5 and Type 2 in many ways because simplictically, in the earlier stages, Type 2 would be expected to show high insulin and high glucose in the blood, wherease Type 1/1.5 would be expected to show low-normal insulin and high glucose in the blood. It is often used in conjunction with GAD test to draw the appropriate conclusion. However, I never had a c-peptide test - I asked and asked but the consultant said he could see I was Type 1/1.5 from my symptoms, the strongly positive GAD and islet tests and my sensitivity to injected insulin. He said I was clearly still producing insulin but not enough, so the c-peptide test wasn't necessary as it wouldn't give us any better information. From that he concluded I was LADA. So, if I were you, Sunshine, I would still ask for the test, but be prepared that they might say it is not necessary.

Smidge
 

Hmmm... That is almost word for word what my endocrinologist said! I wonder why Elaine's consultant is happy for her to have it though...? For me, regardless of anything else, I would just feel reassured if I had the test and it came back that I was still producing good levels... It would feel like an indication of how much 'damage' has taken place, even if its not a fool proof test. Frustrating that different people have different experiences - surely we should all be allowed the same tests...? I do know this is an issue with so many people across the country with carrying health challenges though...
 
In the first instance he gave me it to diagnose me like smidge said, he wanted to see whether I had low levels or elevated levels of insulin in order to make a decision on my diagnosis.

This time, the second time, I told the DSN to request it along with the other tests so she did and the consultant obviously didn't mind but I think it's because he wants to monitor me closely as my GAD result was higher than normal but not ridiculously so and because Metformin is working massively for me so he said he is a bit confused over my diabetes at the moment. So much so that he still won't categorise me as either type 1 or type 2 and so my current medical records read 'diabetes - type unknown'.

One thing I find odd though is that he said he wanted to monitor me closely but then he has discharged me from consultant-led care until there is a deterioration in my condition because I got my hba1c down from 83 to 45 in 6 months? So I'm back with just the DSN until something goes wrong..... I get a bit frustrated about that at times as I don't think I should just sit and wait for my deterioration to come - surely they should be trying different things with LADAs who are still producing insulin to try and help it to continue or something? It seems horrible to just 'sit and wait to deteriorate' :-(


Diagnosed with GD in 2010, Completely disappeared postpartum. Re-diagnosed December 2012 with type 1.5 diabetes, age 26, BMI 23 currently controlled by only Metformin, 500mg twice a day.
 
Worried!

So it's only been a couple of weeks since my consultant appointment where they said nothing had changed.....and now I'm worried something has changed...

For the last week my fasting has went up from 7.3, 7.4, 7.2 to 8.3, 8.6, 8.4 and also...food that I have been fine with is no longer fine... I've had Weetabix in a morning loads of times since diagnosis and usually leaves me on a 6mmol on average but I had it the other afternoon and BAM 12.2 now that seems huge??? Could it have been the time of day because I had it late afternoon insteadv morning?

My levels have also been all over the place this last week too. Ranging from 4mmol but also a few 10s and 11s and that's just not like me?

Do you think there has been a deterioration since the other week? :-( I'm really worried now.


Diagnosed with GD in 2010, Completely disappeared postpartum. Re-diagnosed December 2012 with type 1.5 diabetes, age 26, BMI 23 currently controlled by only Metformin, 500mg twice a day.
 
Hi elaine, sorry for the delay but only just spotted this. Don't be worried (hard I know). With those levels I would say things are changing, keep monitoring and keep a diary of readings. I do know alot of people struggle with alot of cereals weetabix included, type 1/1.5/2s alike. I would inform your consultant and arrange an appointment to discuss. Short term those type of levels not ideal but it is if they are that high for period of time would be of concern. the levels you are having currently either reduce carbs, cut branded cereals,milk (lactose very quick to convert to sugar), or get some insulin sorted. I know what I would choose lol. With your fasting levels elevated it might be u just need to start on a basal insulin and once u have good fasting levels see how your post meal readings are. If not too high you may manage on a one a day injection for a while.

Sent from my GT-S5360 using DCUK Forum mobile app
 
Just remembered when I was in my honeymoon phase my basal was fine but needed a few units of qa to cope with meals. Your body is a funny thing and may struggle with either phase 1 (basal) or phase 2 (bolus) insulin, in full type 1 obviously both. I'm now fully reliant on both but was trial and error after initial diagnosis. When first diagnosed I was put on 36 units total which worked for about a month. After that my pancreas had a second wind and was all trial and error with which insulin I needed for about 12 months. Now pumping on average 25 units total, so still quite a reduction after initial diagnosis.

Sent from my GT-S5360 using DCUK Forum mobile app
 
Hi Brett,

I discussed one night time injection for my fasting at last Appointment and he said he wouldn't do it as my hba1c had come right down to 45 and coz I was in single digits all the time.... I switched my milk to full fat a while ago when I changed my carbs to low GI but I haven't been as strict with my diet lately so I guess that's a starting point.... 5.4 mmol after spag Bol last night but I didn't eat hardly any of the spaghetti so I can't really use that as an indicator....


Diagnosed with GD in 2010, Completely disappeared postpartum. Re-diagnosed December 2012 with type 1.5 diabetes, age 26, BMI 23 currently controlled by only Metformin, 500mg twice a day.
 
In your case I don't think hba1c results are a good indicator for recent levels. Probably going to get lots of comments now but I would try having a normal healthy diet including carbs top get an accurate picture. Obviously not east oads of carbs just what you would of previous. Test regular then you will have a good idea of how your body handles the carbs. I say that as if someone is being treated for eg gluten intollerance they are told to eat gluten as normal until they have the test, otherwise it would invalidate the test. if you have been eating low carb it will be essentially giving a false hba1c. If you find your levels are continually high then you and your consultant would know you require insulin unless you can continue to eat low carb for the forseable future. If you want to carry on low carbing after being given insulin you can do so and reduce your insulin but have the option for non low carb days as you could give extra insulin. Hope that makes sense to you lol

Sent from my GT-S5360 using DCUK Forum mobile app
 
I don't low carb really...all I did was switch all my carbs to low GI so that my body could deal with it.... I think I'm going to struggle in future with really low carb as I don't really know many food types without carbs...never been a foody really!

The problem with me (or with LADA in general) is that I don't have an insulin absence I have an insulin deficiency at the minute and so eating 'normal' isn't going to give an accurate picture either really because I know I don't have enough insulin for a 'normal' diet so high levels on a 'normal' diet aren't going to confirm a deterioration... High levels on low GI most likely will so I guess I'm guna have to stick with the low GI and 'wait to deteriorate' like I was told.... :'( probably the worst thing to hear 'wait to deteriorate'......


Diagnosed with GD in 2010, Completely disappeared postpartum. Re-diagnosed December 2012 with type 1.5 diabetes, age 26, BMI 23 currently controlled by only Metformin, 500mg twice a day.
 
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