LADA/1.5 so confused??

[mimo]

Hi Elaine77
I was advised by my GP that my o set of T2 could have been triggered by stress. I was diagnosed back in 2010 and was 32. Without too many details I had had a tough time and after a climax of events a few weeks later I was diagnosed. No diabetes in the family so was a real shock. Am starting to think that I might be Type 1.5. Levels were really goo at the start but now am floating between 8 and 13. Currently on sr metformin and gliclazide. My DN wants me to start taking insulin but not sure. Doing lots of reading on here from other diabetics to make my mind up Stress is the only factor for me as to why I got T2 so dont fret you are not the only one. It bugged me for ages and I needed an answer as to why I got it. Still struggling 3 years on but find that this place helps a lot. Seems to be the only place where people understand.


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[elaine77]

I agree mimo u could possibly be 1.5 and having u on gliclazide could have accelerated your need for insulin, this is why I keep saying that everyone should ask their HCP'S to be considered given the c-peptide and antibody blood test when diagnosed. I appreciate its more expensive but I'm sure it will save money in the long term because of the complications of wrongly diagnosed diabetes! Maybe you could ask for these blood tests before taking insulin? You should at least be entitled to that before making such a big decision


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[mimo]

Thanks elaine77. Have a feeling that I had that test wen I was first diagnosed because I remember my GP saying it was expensive but worth it. May its just that I need to get better control through diet etc?!? Bit lost about it all at the moment. Have moved doctors and not getting best support from new DN. Nice to be able to talk with others that undertand dealing with it.


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[St4cey]

Hi everyone & Elaine,

So I have just been diagnosed with LADA, after being horribly poorly (as we all were before diagnosis I can imagine) in December 2012. I have the GAD antibodies present but unsure of the amout (i didn't ask!).
I'm similar to you Elaine in that I remain on Metformin (originally I was on Gliclazide that didn't work, increased the dose and that didn't lower bs enough so introduced Metformin and gradually had to reduce the Gliclazide as I was having Hypo's and eating ridculous amounts of food!!) So trying to have a low carb diet, as little treats as possible and some exercise when I can to manage the blood sugars and keep me on Metformin as long as I can (if I can have ANY control over that seen as its my immune system thats the problem here!)
Like you Elaine I can go to bed with a 5 or a 6 and every morning wake up between 7 & 7.6 which too frustrates me!!!! Don't understand it myself!
The doctors considered whether I too had gestational diabetes in 2010 as my son was born 7 weeks early weighing 5lb 14oz!!! Whopper for that age, but they didn't have time to investigate as the pre eclampsia made sure of that!
I've obviously read somewhere else about stress being a contributing factor, i'd been particularly stressed all year with doing a degree, working and having a toddler, but nothing specific prior to diagnosis, i'd just completed the years exams which could have finished me off as it was after this the symptoms started!!

With the family history consideration, my consultant informed me that Type 2 Diabetes runs in families but LADA and Type one doesn't?

Nemesisuk - loved ur story and honesty

Now I am over the shock and thoughts that my life was over forever, I am looking forward to the continuation of healthy living and lifestyle changes ahead if I can just continue how I am for as long as possible! with the help and support of everyone on here i'm sure i'll make the transition to insulin as smooth as possible. (Although I am not looking forward to managing insulin, injections don't bother me just the getting used to a different way of life i think will be the hardest

Hope you're all doing well and thanks to all of the responses and story sharing, it's both interesting and useful

Stacey

 

[elaine77]

Hi Stacey! I was diagnosed December too so it will be interesting to compare how long we can both last without the insulin I have pretty much given up testing in the morning as I know for a fact it will be between 7 and 8 mmol regardless of what I ate the night before because it always is and just annoys me! All my other levels are still between 4 and 7 mmol 2 hours after meals so long may it last!


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.

 

[St4cey]

Hi Elaine,

I too now am not so consistent in a morning nor throughout the day unless I'm trying something new and naughty or something that I haven't had for ages!! Today was chippy 8 2 hours after ! And a small cheesecake after a not so great dinner 2 slices of Pizza n got a 6.9! Seems that when I have a pudding or expect it to be a stupid reading they're not!!

We'll keep in touch and see how we're getting along, as long as poss on Metformin I hope!!! Just signed up for Diabetes research hoping to help myself and future Diabetics! Let u all know what my first study entails! Some of you may have participated or heard of it 'address2' for Type 1 's? (Did tell them I'm 1.5 but suggested that I'm closer to T1 so qualify)

Stacey



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[elaine77]

Hi Stacey,

I've heard of the transplanting they're doing of beta cells and think I may look into that. I had one slice of pizza a couple week back then got paranoid so tested after just 1 hour and got a 5.6 totally confused me! Cheesecakes usually ok too but I had a strawberry tart the other night and got an 8.1 oops..... Maybe not do that again! When I have fish and chips if I take all batter off the fish and douse the chips in vinegar the lowest I can get 2 hours later is a 7.3 which is not terrible I guess..... I can deal with sugar better than carbs to be fair....carbs are the worst for me sugar isn't too bad


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.

 

[elaine77]

Having very weird cravings for Beans on toast....... Waaaaa :'(

Off to the diabetic nurse tomorrow for bloods taken for my next consultant appointment on 13th June to see how many more beta cells have now been unscrupulously murdered......


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.

 

[St4cey]

Hey Elaine,

How've your sugars been recently? Ah Hun can u not tolerate beans on toast? We are total opposites!!! I can't manage sugar rather than carbs! I'm going to meet the Diabetes research nurse on Friday to take part in the 'Address 2' research study, see what that involves!

X


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[elaine77]

Ooh what's that?

No :-( if I have beans on a fried breakfast I end up on about 8.4 mmol 2 hours afterwards whereas if I don't have them a fried breakfast usually leaves me on 5-6 mmol 2 hours later so I reckon they do have quite a big effect on me. That's so weird! I had a piece of cheesecake a couple of weeks back and ended on 6.4 mmol 2 hours later but when I had egg on toast (granary bread) it was 8.4 mmol... It's such a shame coz I wasn't really a sweet sugary kind of person but I loved my French bread/baguettes and my ciabatta....gutted :-(

Levels are ok, they have creeped up from 4-7 mmol post prandial to 5-8 mmol post prandial but to be fair I've been a lot more relaxed on my diet than I was being so it could just be that. I did have a major panic period a couple of weeks ago when I switched from standard release Metformin to slow release Metformin and shot up to 10-11 mmol! I was NOT happy! I was even less happy with one of the GPs terrifying the life out of me by saying there probably had been a deterioration and I might need insulin! I'm only on 500mg Metformin twice a day so I'm not even on the Highest dose of that yet never mind insulin! That being said my morning fasting levels are STILL 7-8 mmol regardless of what I do :-( How about you?


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.

 

[St4cey]

Hey

Hope you got on ok with ur bloods today!! I'm doing ok thanks, plodding along, bit relaxed myself at the min as far as testing and diet is concerned! Bit busy at the mo with a 3 yr old, degree & placement on top of general life and Diabetes!! So I do flit from weeks of good eating to not so good, some weeks I exercise, some weeks I haven't got the energy!! My readings all stating the same really, I have seen a few 6's in the morning when really watching what I'm putting in, when eating normally still in 7's but given up worrying about it tbh haven't got the time or energy!!! However I am finding out about the research project tomorrow, most I know at present is its for Type 1's, recently diagnosed and to look at sibling genetics too, had conversation about me only taking Metformin 1000mg twice per day as meds but apparently doesn't matter, classed as Type 1?! Will update you tomorrow

Egg on toast with those readings! Maybe it's the extra Metformin that ables me to tolerate it, but could say that about sugar which I don't appear to manage well!! Ah the thought of insulin fills me with dread (apologies to those currently using insulin) i bet u had a slight panic!! unfortunately/fortunately we've been blessed with the management of medication and diet which I wish could continue forever

Give you an update tomorrow on the research thingy, if you google address 2 it will tell you about it

Xx


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[elaine77]

Oh god tell me about it! I have a 6 year old and a 2 year old and have just started my Dissertation! Maybe after all of this the stress of life is the actual cause of diabetes! Yeh my sons ex-consultant (for his congenital hypothyroidism which has now gone) had said that there is no type 1.5. And that basically any auto-immune response diabetes is type 1 plain and simple BUT with me being at Uni I have access to all of the medical journals (every academic journal really) and there has actually been research carried out that DOES show significant differences between type 1s and type 1.5s! A lot has been done by Scandinavian doctors they seem to be so much better when it comes to diabetes than the Uk is! Have u heard of the GAD vaccine that they've tried and dismissed and then are thinking of trying again? Wen I first read up about 1.5 I have to admit a GAD vaccine was the first thing that came to my mind that might help us folk with a very slow auto-immune response....

Same here. With the insulin thing...it gets me so panicky...there's a thread In a different section about the SMELL of insulin how its strong etc.....it made me feel physically sick the thought of it I started panicking straight away....I know they say it's inevitable and we have to get used the idea of being insulin dependent but honestly right now I'm not sure I could cope with it.....

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.

 

[St4cey]

It's never ending Hun isn't it, even more so for you with 2 kiddies and in ur 3rd yr! What's ur dissertation on? I loved doing my dissertation years ago in my first degree, I'm a bit of a geek and like to learn!! Yh I've been in the journals too, accidentally however after doing a task for something else and randomly coming across one which filled in the gaps prior to confirmation of Type 1.5, I can't quite remember if my consultant used 1.5, I'm sure he did. Need to make the most of the access to journals whilst we can although it can be a massive distraction from getting Uni work done which isn't a good idea when uv got kiddies and time slots to get stuff done!!

X


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[elaine77]

Me too knowledge is everything haha.

Dissertation is on the effect of multiple deprivation upon the causation of violent crime compared to acquisitive crime. I'm doing BSc(hons) Crime Science which is like criminal investigation and criminal intelligence etc... I was doing Criminology and Forensic Science prior to that before I had the kiddies so this time next year I'll be all done and dusted hopefully!

I know what you mean...first semester this yr I was getting first class honours marks then after diagnosis it slipped to low 2:1 but I really want that first lol so I'm guna just have to get my head around this disease! Hopefully my consultant review on 13 June will give me some kind of indication of how fast/slow its progressing :-( hopefully sloth-slow.


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.

 

[St4cey]

Hey Elaine,

Apologies for being a stranger!! Been spending all my time this weekend with my boy, he's been away the past 2 weekends with my parents so was catching up on missed time and enjoying the sunshine

Wow that dissertation sounds so interesting, it's frustrating isn't it about marks I'm the same 80's & 90's last year now 60's & 70's which is still really good and I'm pleased given everything that's been going on this year but I would love to get back up there, PLUS it does get harder each year (so I've been told anyway!) I'm doing mine through the Open University, it's tough going but I love it

So I went to the research thingy and didn't get very far! They were quite disorganised, my notes weren't there so couldn't fill out all of the paperwork and the blood testing kits were incomplete! Going back on the 10th June so should find out more and give my blood test. Fortunately I don't have to do anything, just consent to anonymous blood sample at present, they were also unsure of whether to start the study from the diagnosis date in Dec or from Apr when diagnosed with T 1.5, sure they'll sort themselves out!

You still craving beans on toast?!

X


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[elaine77]

Yes still craving :-(

I'm back with the consultant next week on the 13th for the results of the bloods from the other week so I might have an idea about how it's progressing by then. My levels have creeped up the last few days and I'm not sure whether its due to the hot weather or a deterioration or just because I haven't been as strict with my diet but I've seriously been considering going onto one basal injection of insulin once a day before bed due to my fasting levels not improving.....

I've been thinking and I think...would I rather be on one injection a day for a long time or be on no injections for a short time and then loads of injections forever after that! The former seems more appealing to me at the minute...the only thing stopping me is the lack of evidence that going onto insulin earlier actually preserves the beta cells for any decent period of time so I'm a bit torn at the minute.....

On the bright side did you see the link someone posted about the bio hub? Apparently it's the most plausible form of a cure for this disease and they think it will be on the market in 5-7years... Trials are starting this year apparently (in the USA i think). It's a long shot but it makes me think...if I can just hold onto my beta cells a while longer then it mite be easier to fix..... Wishful thinking no doubt lol.

Did you get the figures of your c-peptide and your GAD results when you were diagnosed?x


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.

 

[mrman]

Good luck on your results elaine hope too many of your cells havnt been murdered.

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[elaine77]

Thanks Brett....poor cells :-(


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.

 

[mrman]

Lol

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[St4cey]

Ah rubbish

I buy the Burgen Soya and Linseed bread, tiny loaf which is quite good, lowest carb I found I think and maybe with a spoonful of beans? Bright side to insulin is that you can have this and inject for it! Personally I would have it in a small amount, I'm all for having what I want now and then within reason, although I never dip into the haribo that the boys have stashed in the kitchen drawer, now that does kill me!!!!

I would agree to consider insulin as I too thought this and will ask at my next apt which won't be until July, my readings have been the same if slightly better last few weeks, still in 7's but then a few 6's too, I've been trying to get some exercise in tho so this may be helping
I've been told to expect my readings to be lower in the hot weather not higher?

No I didn't get my Gad results but I hope to on the 10th if they have my records, if not ill ask at the end of July so we can compare dying pancreas's lol!

Oooh no not heard of the bio hub! Exciting stuff, be great if we could hold out but think I've accepted that the inevitable will happen, I'm thankful to be in the honeymoon phase however long it lasts (crossing fingers until at least Feb 2015 after my degree and wedding!!) then ill have time to get my head around it!!

Xx


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