• Guest - w'd love to know what you think about the forum! Take the 2025 Survey »

Type 1.5

D

dib

Well-Known Member
Messages
95
Hi all,
Does anyone think there is a need for a type 1.5 section? While it is very interesting reading about other's experience of type 2 it doesn't really help me with my type 1.5 which has rather different characteristics and so needs treating differently.
Any thoughts most welcome.
 
I suppose it may be worthy of some consideration as it isn't Type 1, or Type 2.......it is basically a combination of the 2. It is also known as LADA. Latent Autoimmune Diabetes in Adults. Not everybody has agreed that it is distinct from Type 1, so maybe it could be a subsection there ?

As far as I am aware research is still ongoing regarding a criteria for diagnosis. What I do know is that it has the same as T1, the presence of antibodies in the blood, at the beginning it is diagnosed in Adults and there is often no need for Insulin at diagnosis, sometimes for 6 months or more. I have read where it can be up to 6 yrs before Insulin would be required.

So, although it is slightly different from T1 because Insulin is not needed at the outset, and T2 because there are antibodies in the blood the actual treatment and ways to control are much the same as any other type of Diabetes. Blood sugar levels and overall health need to be controlled and the methods are the same as any other. So I am not really sure why you think it needs to be set apart.

Just a thought....... :)
 
Point taken, I guess it was proving difficult to find another one with similar symptoms to mine. Although I have just noticed someone has left a post on another thread ('confused', in Low Carb section) who seems to be the same. I'll wait to see if something develops there.
 
Dib.

We will pass the idea on to the Administrator but I have to say that then leads to all manner of sub-sections Type 3c for or MODY for instance. Basically where do we stop. Nobody has said no....... :)
 
As it was years (4ish?) before I was changed to insulin after they did the test for antibodies, I assume thats similar to the type of diabetes I have. Apart from the slow onset, is there a difference to standard type 1, once it has progressed to needing insulin?
 
No probs...... :)

Can I suggest that you read the latest research section, in particular the Cochrane Review which states that sulphonylureas are really not recommended as the best initial treatment, however as yet most of the research is inconclusive.

It seems to be putting off the inevitable, Insulin. In my view this is what should be prescribed, even if only in very low doses, immediately it is diagnosed, it would probably stave off any progression and delay destruction of the Beta cells.
 
The GP told me to stop the gliclazide straight away when they got the antibody test results back, I assume for the reason in that research, so maybe they are more informed diabetes and the different types than I thought! Though, if the GP thinks it is so bad to take gliclazide with LADA, why don't they test for it right away.

Re: starting insulin right away, sounds like it would be a good idea, it would only be a few extra years of injections, and would prevent years (in my case) of having tablet doses increased and extra tablets being added.
Also, being told you have diabetes and will be on tablets for decades, and then probably insulin, and then coming to terms with that, but then a few years later being told you suddenly need to start insulin, is not great. It would have been much better to have either been warned it would happen this quickly, or being started on insulin right away.
 
Hi,

I too think I may well be LADA, or at least it seems to fit my profile. That link is very useful as well. I'm not 100% convinced of the need for a separate section per se, as I think I'd include myself within the type 1 discussions as well as the general stuff. Perhaps some specific threads might help on some key questions?

Also, my diabetic consultant (or more accurately, one of his minions) saw me for the first time last week and started me on insulin on the view that it would help get control, and perhaps give my system a rest. If my results were positive for antibodies, then I would carry on. If I am actually type 2, then I could come off it in a few months and try some other treatment. Seems to concur with your view Cugila.

Russ
 
I think we should cover 1.5 diabetes on the website here.

Expect to see some information in the early months of 2011 :)

Benedict
 
benedict said:
should cover 1.5 diabetes on the website here.

Expect to see some information in the early months of 2011
Click to expand...
Yes please, there is lots of info on LADA available but very little on sites that are likely to be used as intial ports of call.
This story shows the possible results of neglecting LADA in it's early stages.
http://www.malehealth.co.uk/pancreas/19 ... -killed-me

Parts of his story could have been mine and I've read of other people with similar stories. I've also read of far too many people who are misdiagnosed, simply because of their age and neither they nor their GP realise that LADA exists and it is not that rare.
Like Lee,I blamed the all the symptoms on other things,... weight loss for example on restoring the new house and huge garden. Moreover, and typical with LADA, I had periods of weight loss and symptoms followed by periods when I almost forgot it, the process is not a linear decline for many and you don't notice changes.
A large part of the reason for neglecting the symptoms was that general diabetes info sites never mention LADA. Of course in the back of my mind there was a niggling thought that it could be diabetes and I looked up lots of general sources for diabetes but though some things fitted, others didn't.
I didn't fit the profile of T2 just look at this page on DUK
http://www.diabetes.org.uk/Guide-to-dia ... k_Factors/
Apart from age, didn't have any of the 'risk factors and even if it was T2 , then to quote, 'This type of diabetes is treated with lifestyle changes, following a healthy balanced diet, increasing physical activity, and losing weight if you need to'.... it then slips in medications as an after thought! Well I did all that already.. and my weight was fine!

T1 symptoms fitted better but I didn't fit that either; it's onset was rapid and 'Type 1 diabetes can develop at any age but usually appears before the age of 40, and especially in childhood.'
(For people of my age we remember it being called ' juvenile diabetes)
I was 'lucky' that DKA intervened before I developed the permanent complications... but i didn't get away scotfree (kidney function is lower than it should be for example and some background retinopathy that appeared a year after diagnosis) Some good quality general info might have ensured I went to the doctor sooner.
 
benedict said:
I think we should cover 1.5 diabetes on the website here.

Expect to see some information in the early months of 2011 :)

Benedict
Click to expand...
Excellent news , thank you.
My GP wouldn't believe I was diebetic at first as I have always been slim, active and very rarely unwell. It took 3 GTT's over 6 months to convince him, thank goodness my nurse stood by her suspicions after a routine 50+ annual check revealed high BG. While it has not been confirmed that I am type 1.5 everything seems to point to that, my levels seem to behave very differently to the typical type 2 with normal 3.9 - 5.50 fasting and pre meal readings which spike (highest since I started testing is 16, usual is between 8 and 10 after 2 hours) in reaction to starchy food. I do seem to have enough working insulin to get levels down to normal after 3 - 4 hrs which I am grateful for. My next task is to convince my GP that I need an antibody test, he was going to put me on gliclazide without this test after discovering 3 months of 3 x day 500g metformin actually caused a slight rise in BG from 8.9 to 9.
Throughout my whole life I have been sensitive to low BG, starting to shake, sweat and panic if I didn't eat something every 3 - 4 hours. I have two daughters and a sister who are the same, fortunately my wife and other two children show no signs of this. It does seem to reinforce the notion that I am NOT insulin resistant.
I believe mine was inherited from my father (an otherwise healthy man who never smoked and rarely drank, and never to excess) who wasn't diagnosed till his 60's by which time he had bout of ketoacidosis to confirm it. I believe he had gone undiagnosed for many years. and died of a heart attack after two strokes in his early 70's.
Any information that would help avoid a similar scenario would be gratefully received, I look forward to the New Year.
 
LADA of course isn't the only 'other' type. MODY is another type sometimes called 1.5 that also needs some general info on. The name Maturity Onset Diabetes in the Young is in itself extremely misleading!
 
Hi all,

I'm so glad this discussion is taking place! Misdiagnosis as Type 2 nearly killed me! Now on insulin and doing much better. I only have to take insulin sometimes, other times I don't need it. I am clearly not insulin dependant yet (well, not all the time anyway) and therefore not Type 1 but I have absolutely no insulin resistance and therefore not Type 2. I have always been slim and healthy, but this still did not ring any warning bells for the medical profession when they diagnosed Type 2 - I also have none of the other signs such as high cholestorol. In fact, because my diabetes comes and goes, there was considerable doubt for some time that I was diabetic - the specialist even offered to undiagnose me!. I was left unmonitored because they thought I was only mildly diabetic if at all and the diabetes went completely out of control. They then tried me on gliclazide which made me very ill but did nothing for my BGs. Luckily, I managed to see a specialist eventually who decided that I'm not Type 2 and that it is very rare for anyone of my profile to find tablets work for more than a few months, so he put me straight onto insulin. He said that there is growing evidence that going onto insulin in my circumstances gives the body a break and helps protect and prolong the production of beta cells.

Anyway, back to the point, I think a forum for the non-Type1 and Type2s would have been very useful to me - although many people in the Type 2 forum actually did help me a lot, for which I'm grateful. The problem was that I thought I was going mad because the pattern of my diabetes didn't match anyone else's and I felt a complete failure because many Type 2s were doing so well controlling their BGs but it didn't matter what I did in terms of exercise or what I ate, my BGs were extremely erratic from the low 4s to the high 20s.

Sorry for the ramble, but it is actually a relief to hear other people with atypical symptoms and different forms of the condition. It makes me feel less alone!

Smidge
 
smidge, thanks for your reply and to everyone else who has replied positively to this topic. I too wondered what was going on and beginning to feel very alone with my symptoms. I feel I am on the path to knowledge and proper control now. Which can't be a bad thing and long may it continue! I will keep you posted of my progress.
 
Perhaps we could have a 'Other forms of diabetes' section to cover LADA, MODY and other types?
Agree that maturity onset diabetes in the young is a misleading title, it suggests that MODY is the same as type 2 but for younger people, which is wrong as many younger people can get type 2 and MODY is not the same at all - type 2 primarily caused by insulin resistance whereas MODY is (often) due to a missing gene for the message to tell the pancreas to secrete insulin in response to high blood sugar.
 
Back
Top