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Good new, confusing news

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suevm

suevm

New Member
Relationship to Diabetes
Type 1.5 LADA
Just back from my first appointment since diagnosis 4 months ago.

Good news - my HbA1c has gone from 15% to 6.5%!!!!

confusing news - nobody has answered my question with confidence, i.e. type 1 or type 2? Today I perservered with my question.....and the answer?
Apparently I'm being labelled as Type 1.5.
This is somewhat confusing, especially as my GP gave me the Type 1 label.
I've been on a low dose of insulin for 4 months, plus Metformin. This appears to be doing the right thing!

Has anyone else found themselves in the Type 1.5 group?
 
there are several members who are 1.5 so they will be along and answer you soon.

I'm glad the medication is helping you and well done with your numbers, the hard work pays off.
 
Yes, we have quite a few members who fall into that category. Quite often a person will be initially diagnosed Type 2 mainly due to age (i.e. not a child), but if insulin turns out to be the only medication regime that actually works well then you can be described as Type 1.5, or Type 1 - the only difference really is that the onset can be much slower than you might normally expect of Type 1, as your pancreas loses its ability to produce insulin. In reality, diabetes isn't just one or two types, it's more like a spectrum. I had quite a lot of symptoms for about 18 months prior to being diagnosed, but had dismissed them at the time. It was only when my levels went haywire after contracting a virus that I ended up in hospital and diagnosed. With me, my consultant thinks that the fact I was a regular runner was helping to make me very sensitive to the declining amounts of insulin I was producing - when I got the infection it was just too much for my body to cope with.

I wouldn't worry too much about the Type as long as you are on a treatment regime that is working, and that excellent result shows that it is working well - well done! 🙂
 
Thank you for your lovely comments. I guess I'm coming to terms with having the 1.5 label - at least I know now. I'm looking forward to hearing from other 1.5s.
I suppose I will either become 1 or 2 eventually? Either completely insulin dependent ....or not.
Thanks again for your support.
 
suevm said:
Thank you for your lovely comments. I guess I'm coming to terms with having the 1.5 label - at least I know now. I'm looking forward to hearing from other 1.5s.
I suppose I will either become 1 or 2 eventually? Either completely insulin dependent ....or not.
Thanks again for your support.
Click to expand...

Again, it can be confusing! You will most likely be dependent on insulin as it would appear that your pancreas is producing little of its own. Type 2 has very different origins: what happens with that is that people are insulin resistant - they can't use the insulin they produce properly. Their pancreas will respond by trying to produce more and more insulin, but eventually it isn't enough and their blood sugar levels become high enough for a diagnosis of diabetes to be made. Many people with Type 2 are able to manage their condition by introducing modifications to their diet and increasing their activity levels, without medication, but others may need increasing amounts of medication as their pancreas begins to decline its insulin production (it's like it gets tired out eventually!). When the pills no longer work for a Type 2 they will then also need insulin to control their levels, but due to their insulin resistance may need much greater doses than a Type 1 or Type 1.5. There are about 1 million Type 2s in the UK who need to inject insulin, as opposed to around 300,000 Type 1s and Type 1.5s.
 
Hi Sue, welcome to the forum.

I was initially diagnosed four years ago as T2 purely on the basis my weight and age, but re-testing a few months later showed I'm actually T1.5. This is basically slow onset T1, also known as LADA (Latent Autoimmune Diabetes in Adulthood) with the pancreas slowly giving up the ghost but still producing some insulin. We seem to show varying degrees of T2ness or T1ness as the diabetes progresses and my GP at least has no clue what to do with me. Luckily, I got referred to the Diabetic clinic and things have been much better since then. It's only in the last 10 months that we've managed to find a regime that works for me, before that I was really struggling. I'm currently on a combination of insulin (3 jabs per day) and Victoza (1 jab per day) and it seems to work for me, at least for now. My last two HbAs have been in the 6s which is wonderful and I'm aiming to keep it that way.

I don't know how it worked with you, but I'd been tested about 8 months before I got sick and had no signs or symptoms of the Big D. It seemed to come on rather quickly in a period of about three or four months though I'm not sure about that as the whole thing is a bit foggy and I'm going by what's in my medical records.
 
Hi Alison
Nice to hear from another 1.5!
I had many of the symptoms over a few months/year, but hadn't realised what was wrong or didn't go anything about it. I had an extreme thirst, leading to dashing to the loo all the time, especially at night. Plus I was eating like crazy....and then discovered that I had actually lost weight 🙂
After diagnosis, I put the pieces together and realised that I had been extra tired too and had deteriorating eyesight etc.
I was diagnosed in June when I went for my pre-op tests to have a wisdom tooth removed under general anaesthetic. From that moment there was action and my life changed!
So thank you for saying hello. I don't feel so alone now!
Shouldn't the '1.5 group' be better recognised/made more official?
 
suevm said:
Shouldn't the '1.5 group' be better recognised/made more official?
Click to expand...

It would be nice, but a large number of medical types believe 1.5 doesn't really exist, it's a just a convenient label for some round pegs who don't fit the square holes.

Research appears to be showing that there may be even more 'types' than the four we see most of in here. That's T1, T1.5, T2 and Gestational. Sorry, I forgot the fifth: MODY (Maturity Onset Diabetes in the Young).

Personally, I don't really think the label matters too much as long as the treatment received is appropriate and works.
 
Sue - well done on your Hba1c reduction !! very impressive 😉
 
I've spent all evening reading up on the types of diabetes and I'm still not much clearer. The only progress I have made is the idea that I may not fit the type 1.5 group. I'm fairly certain that the Prof today said I was negative to 'anti-GAD' - I think that was it - definitely negative to something like that, which is present in T1. From my research this evening I beleive that T1.5/LADA is anti-GAD positive.
I also read that only 75-80% of T1s test positive (i.e. not all).....meaning that I could test negative and still be T1????
Am I right with these facts? If so, where does that leave me?
I really need to know - it's getting me down. :(
 
Sue, I wouldn't be worried too much about finding out how precisely you fit certain definitions. I have been diagnosed for over 5 years now, and they wouldn't tell me at first what type I was. I was a 49 year old marathon runner, about to run a marathon the week I was diagnosed, caught a stomach virus and ended up in hospital with DKA. I was immediately put on insulin, but relatively small amounts (I was on 60 units when discharged, Type 2s can often inject hundreds of units due to insulin resistance). After my body started to recover I found that I began needing to reduce my doses, particularly of my basal (slow acting) insulin. I started on 20 units of lantus, but 18 months later I was on half that. About 18 months ago I had reduced it to 2 units, and decided to try without it - I was fine! I had also reduced my other insulin so I was now down to about 18-20 units of insulin with my food only. After nearly 4 years my pancreas was clearly still producing some insulin, but not enough to cope with my food.

My consultant, who is a leading authority, can't explain it. We discuss the possibilities, but nothing seems to match my own particular flavour of diabetes. The main thing is my treatment works. I'm not a normal Type 1 but nor do I have any real characteristics of Type 2. I think I will probably always need insulin with food, and one gloom and doom doctor did dismiss the news I had stopped basal with the words 'well, you'll probably need it again soon (that was 18 months ago!). He may be right, but there's little sign of it yet! 🙂
 
Northerner said:
I'm not a normal Type 1 but nor do I have any real characteristics of Type 2.
Click to expand...

Thank you - you're very helpful and informative. The quote above sounds like me at the moment. However, I'm on a very low dose of insulin, only 20 units per day. But I'm also prescribed 2000g (2g) of Metformin per day. With this combination over 4 months, I have achieved my perfect HbA1c of 6.5.
The prof did toy with the idea of experimenting and taking me off insulin completely, but then decided to continue as before. I'm wondering what would happen if I stopped the Metformin and continued with insulin?

I do envy you as someone sometime has put you in a category, even if you don't fit perfectly. My GP hesitantly called me T1, but the Prof just explained why I wouldn't be a typical T1, suggsting that T1.5 would be nearer the mark.
I hear what you say about not worrying, but whenever the subject of diabetes comes up, the first question is always which type? I really feel stupid saying 'I don't know'.
 
suevm said:
Thank you - you're very helpful and informative. The quote above sounds like me at the moment. However, I'm on a very low dose of insulin, only 20 units per day. But I'm also prescribed 2000g (2g) of Metformin per day. With this combination over 4 months, I have achieved my perfect HbA1c of 6.5.
The prof did toy with the idea of experimenting and taking me off insulin completely, but then decided to continue as before. I'm wondering what would happen if I stopped the Metformin and continued with insulin?

I do envy you as someone sometime has put you in a category, even if you don't fit perfectly. My GP hesitantly called me T1, but the Prof just explained why I wouldn't be a typical T1, suggsting that T1.5 would be nearer the mark.
I hear what you say about not worrying, but whenever the subject of diabetes comes up, the first question is always which type? I really feel stupid saying 'I don't know'.
Click to expand...

I would just say Type 1 - the public are confused enough as it is anyway! 🙄 What would possibly happen if you came off the metformin is that you might need more insulin, as metformin reduces the glucose being produced by your liver and also slows the digestion of carbohydrate in your gut (I believe!). 🙂
 
Many thanks everyone for your helpful and supportive replies. I feel more informed now, even though there are still areas needing clarification. From all your advice I think I have a better idea of where I fit.
Seeing my GP tomorrow - also found out I have high blood pressure - so will (hopefully) have a chance to discuss my situation.
🙂
 
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