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Type 1.5/Lada experiences - what can I learn?

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pickledpepper2

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I generally try to keep my chin up against the ups and downs of life but recently the thought of being misdiagnosed has been preying on my mind. One of the many annoying things about this condition is having to second guess those in the medical sector, many of whom, frankly talking, frequently appear to be quite 'casual' and even generally clueless about the whole matter of having this condition......at least to any sort of depth.

That's why I'm posting in this T1.5 section. I'm hoping that direct communication with the experienced may help to shine light where there is currently doubt and confusion. Bear in mind I'm writing all this severely effected by hayfever <sniff sniff> and possibly in the middle of an overdose of antihistamines........

Anyway, let me quickly get to the heart of the matter before I prattle on needlessly!

I was diagnosed as a T2 just over 3 years ago. With hindsight I now know that certain symptoms of the condition were apparent a few years before that. Prior to diagnosis I was having a hellish time with my employers whilst already in a demanding job (teaching teenagers). My previously generally toned/slim/athletic build deteriorated to a more portly figure during the last year of my employment in the aforementioned role. I left (or was compelled to) and shortly afterwards rapidly lost so much weight that I would class myself as a 'waif' at that time. I was exhausted and could barely walk to the shops around the corner, whereas I had no problem with walking multiple miles previously. And under these circumstances I was diagnosed with off the scale figures (a fasting level of 20, and a Hba1c of 15+).

I found this site and quickly brought those figures down via light exercise and low carbing. (The next set of figures just 4 months after the diagnosis were a fasting level of 5.3 and a hba1c of 5.8, which ironically are the best figures I've ever achieved post diagnosis). Subsequent hba1c numbers generally sit around the very late 5s and early 6s (with my last one being 6.2). I'm currently on the slim to muscular side and generally train every day bar the odd exception. I struggle to put on weight and easily lose muscle mass.

To cut to the quick. Based on your own experiences, do you think I may well have 1.5? Given your own hindsight, is there anything I should look out for as indicative? For the record, my cholesterol levels have ALWAYS been high (I share this incase this is any indicator), even way before diagnosis.

I plan to discuss getting a GAD antibody test with my nurse, when I see her about the results of my cholesterol tests next month. Any feedback in meanwhile is appreciated.
 
YES I do! I was misdiagnosed as having type 2 and I just kept getting sicker and sicker until I DEMANDED I need to be referred to a Endocrinologist and when that happened and C-pep and GAD antibodies were tested it was confirmed I had an Autoimmune form of Diabetes and what they called LADA...PLEASE fight your corner and insist on further tests..trying to treat type 1 with oral meds and diet is impossible as I found out to my cost...I wish you the very best and I hope you can get the treatment you need and deserve.

Best

Paul
 
Hi. It's quite possible you are T1.5 although your blood sugars are now very low for a T1? Losing weight quickly is an indicator (mine weight dropped suddenly as well, although not overweight to start with). I had a GAD and c-peptide done privately; useful as it showed I had virtually no insulin but the GAD was negative. Don't worry about the cholesterol as it's irrelevant to your diagnosis.
 
I think that there are more diabetes types than we think and that results in many different experiences.
Paul is correct to say that in his case when he got sicker and sicker (and had very high glucose levels) demanding a test was absolutely the right thing. However as Daibell says, at the moment your levels aren't high so I actually think it would be difficult to persuade someone that a test is necessary.
Personally, I don't think my story is much help. (but I'll give it anyway!)
Three years before diagnosis, I had a lot of weight loss ,there was very high glucose in my urine (didn't go to docs but 'borrowed' urine strips from pregnant daughter; didn't really know what the level meant.). For the next three years I ate a low GI (not necessarily low carb) diet and physically felt Ok for most of the time (though several bouts of thrush mostly associated with summer visitors and croissants!)
Then everything went downhill. Lost more weight and suddenly came to an abrupt stop with very high glucose levels , ketones and a hospital stay. I went straight on to insulin and was tested for antibodies.
So you could be like me, I don't really know . Pragmatically I am glad that I presented to docs in such a way that there was no doubt . What I have noticed is that even since then there have been ups and downs, sometimes I think that my pancreas was working ' better' sometimes less well. It is only now, twelve years since I first had symptoms that I think my pancreas isn't 'helping' much. (for me makes things easier, fewer hypos)
 
Thanks for the feedback thus far.

It's quite possible you are T1.5 although your blood sugars are now very low for a T1?
Click to expand...

Although I'm considered a T2 right now, my thoughts are that a misdiagnoses of T1.5 means that a partially working pancreas could 'pack up' suddenly, If I've understood the nuances rightly that is?
 
Hi pickled pepper,

The only way to find out is to get that c-peptide and GAD done if they will do it. Presumably if you are no longer overweight but still need to stick to a very tight diet or your levels shoot up then I would be doubtful about type 2 as I think the resistance is supposed to drop with the weight? So losing weight means you should be able to handle more carbs? Don't take that as completely correct though as I am no expert with type 2.

I don't think that just because your levels are good u can't be type 1.5 because at my recent review I have got my hba1c down to 45 from 83 with the help of Metformin and by just changing my diet to low GI carbs, I don't even really low carb just low GI and I have enough insulin at the minute to stay around 6 mmol on a low GI diet. Regrettably I can't say I exercise an awful lot either, I'm certainly active but that's as far as I would go. I was diagnosed type 2 initially aswell as I had GD but my BMI was 23 and I presented with ketones at diagnosis so it was clearly a misdiagnosis.

What I would say though is that if you have such good control without any meds then I wouldn't worry too much about the diagnosis until something changes. I've literally been told to 'go home and wait to deteriorate' basically because my levels are not high enough to consider insulin. It's an awful thing to be told but they just don't know what to do with me! This angers me as surely they should be testing things whilst people are still producing insulin? But no....the health service really just don't know enough about this disease...


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.
 
Thanks elaine.

My last nurse (whose now retired), hadn't even heard of a c peptide test despite doing the job for decades! lol

Have tests and appointments coming up soon. Hopefully will find out more. New nurse seems much more clued up.

Fingers crossed. x x


Plus have a pack of strips coming too, so can test myself for a bit - have seriously fallen off wagon lately for some reason.
 
You can exercise as much as you like to keep your levels down but if you have slow onset type 1 your body will simply waste away. If you are also taking oral meds, you risk metabolic disorders. C peptide can be helpful to see what stage you're at, but the antibody test is crucial for you. I was misdiagnosed type2 by NHS for 18 months. Luckily I had private insurance and got my tests done private otherwise who knows where I would have ended up with NHS.

Good luck
Craig




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Thanks Craig.

Actually saw my GP in last few days and raised the LADA question. She wasn't having any of it and said I was doing fine (hba1c at 6.3). She said we'd do GAD antibody test when my hba1c goes to 7. Said it was not a 'standard GP test'.

Also told me that my two packets of test strips (per year!) has to stop too.....yay!?!?!

The harbinger of good cheer she is.......
 
Hiya everyone.
I'm new to this posting thing but here goes! This site is so informative.. I want to share my own experience as you all are so knowledgable. I was diagnosed as t2 15 years ago. Started Med's a few years after failing to control by diet alone. My 3 month bloods remained well below 6 and I lost a couple if stone which seemed to help at the same time. Taking 1000 mg of metformin a day. Last 3 app at nurses my bloods have crept up to 6.5. A diabetic specialist has put me in for a gad test as my build isn't typical of t2 ... Shouldn't this have happened years ago, when at 25 the doc was saying to me late onset was unfortunate in someone so young! I'm worried now... Because I thought I knew my body and now I don't!!


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Hi Dusk71. Good that you are having a GAD test. I would keep an eye on your meter readings. I added Gliclazide and then Sitagliptin to my meds as my sugars slowly rose over 8 years. Insist on further action when you increasingly low-carb but the sugars keep rising and your weight is at or below normal. I finally convinced my GP to put me onto insulin earlier this year when my HBa1C reached 8.3% and I now have freedom to eat more reasonably and my superb DN can see that I really needed the insulin. In my case the c-peptide test showed I had very little insulin but the GAD was negative so it isn't a conclusive test. Good luck.
 
It feels so weird sitting here waiting for the unexpected.

It's like the concept of 'preventative practice' or 'foresight' is alien to the NHS........sigh.....
 
Thanks Diabell.
I get really frustrated as I genuinely don't think I can do anything to help myself, when I go to nurse and she says my bloods have risen and I need more Med's I usually end up upset as I feel I've failed! Thanks for ur advice and support,! :-)


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