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Newl diagnosed type 1.5 - advice, please, anyone?

S

sd29

Well-Known Member
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48
Hello,
I have had a bit of a strange week having gone to the doctors just feeling unwell, and being called in to be told after several repeat tests, all in rapid succesion, that I have type 1.5 diabetes (I didn't even know there was a 1.5 type), probably LADA. They called me in for results, which really scared me. I am 29, have a BMI of 22, am not overweight and do all the right exercising things, or thought I did!

I have been put on Metformin straight away as my blood sugar was apparently very high for a fasting test, a little shell shocked so can't remember the numbers, and I don't even know what they mean. I feel completely flawed by this diagnosis, don't know whether to take it seriously or not, and don't even know where to start with what to do next. I have begun the Metformin, but feel I am taking it blindly, my pharmacist just told me to expect flatulance! (I am sure my colleagues will really appreciate this!)

I was wondering if anyone could direct me as to the type of questions that I need to be asking when I see my GP again next week, as I don't know where to begin. I am sorry to bother with something that is relatively trivial, but I have never heard of this type of diabetes before.

Any advice would be very welcome and much appreciated! Thank you.
 
Hi

I'm not the most experienced here but I just wanted to say Hi to you.

From what I've seen so far Metformin seems to be the default drug they tend to put Diabetics on it's to help the glucose levels.

I'm still going through tests, within next two weeks will get insulin production/resistance tests and I've got a referral for genetic testing for MODY...I've started to find out there's different types of Diabetes, and not too much info out there for them all like LADA/MODY :?

It's all very new to me too but this forum has been a great source of information for me and I hope it will be for you.

Like you though I have normal weight/ 'good BMI' (I'm 34 years old) they keep telling me I'm 'an unusual case' :lol:

Good luck with your search.
 
Thank you so much to both of you for taking the time to reply. The link has been a great starting point, and I understand about 'unusual case!'

I feel it does seem to be a minefield of tests for a while, my GP called me in on Good Friday, talk about great service! Best of luck with your tests Sanober, and thank you again for the inormation Phoenix.

Best wishes
 
Hi

First, don't panic. You are not alone on this forum and there are many who can help you along the way. Although it has come as a surprise to you that you have diabetes the fact that your GP etc has diagnosed type 1.5 is a good sign that they understand the range of diabetes conditions. Most often, like my GP, you are just placed in type 1 or type 2 and they appear disinterested in looking further. The fact that you are having tests should help the GP with the best treatment. Most diabetics are placed on Metformin to start with; perhaps after following some dietary advice. In the forum you can find out more about each of the drugs but put simply Metformin reduces the amount of glucose roaming the system. I was one of those 'type 2s' who had lost weight on diagnosis and am still underweight so not everyone has a weight problem associated with diabetes; we are all different! Most of us who take our condition seriously obtain a blood glucose meter and measure our blood sugar as and when needed. This will help you understand the impact of different foods on blood glucose (BG). Talk to your GP about this and ask more questions on the forum. Good luck.
 
Hi
LADA is a slower-onset form of type 1, which is an autoimmune disorder. Though sometimes people just say type 1.5 when they're not sure if its type 1 or type 2. It's quite usual for people with LADA or type 1 to be normal weight or under weight at diagnosis. Please forget any ideas you may have that diabetics are always fat! Type 2s can be slim, type 1 are usually slim and both types can start at any age. Don't blame yourself either.

It would be interesting to know what tests your GP did to arrive at the answer of type 1.5, but I realise this is probably a bit of a blur right now. It's more common for GPs to label you as type 1 or type 2 based on your lifestyle/weight, or if they're not sure maybe they treat you as type 2 and see what happens (without appropriate treatment, a 'traditional' type 1 can deteriorate very rapidly). Then they'd probably refer you to a specialist for more tests if the diagnosis was in doubt. If your GP has done more extensive tests straight off, you chose a good one.

I would start by asking him to explain why he thinks it's type 1.5 rather than type 1 or type 2, and what treatment he plans.

Even with the metformin, if you start to feel very unwell (vomiting, stomach pains, palpitations, very drowsy), it's important to get help promptly from your GP, NHS Direct or go to A&E. These signs mustn't be ignored because they could mean you're actually type 1 and need urgent attention.

Do let us know how you get on. Good luck,
 
Re: Newyl diagnosed type 1.5 - advice, please, anyone?

Hi,

I've been recently diagnosed as late onset type one or LADA. As Littlesue says from a medical point of view, there is not that much difference between the two in terms of treatment. Diagnosis as T1 (or 1.5 LADA) requires some more sophisticated blood tests than a GP normally does - these would usually be C-Peptide and a GAD antibodies test. These verify whether your diabetes is autoimmune (i.e. T1 or 1.5) or not (T2). In autoimmune forms, your body slowly destoys the insulin producing cells in your body. In classic juvenile T1s this happens really quickly. Late onset type is slower.

Personally I was (mis)diagnised as T2 and started on metformin. This stopped working after a couple of years and I started on insulin after a couple of A&E visits and a referral to the hospital diabetic clinic. The bad news: all T1s and T1.5s will require insulin, but the better news is that if you're LADA you may well be able to go for some years before needing it. I believe the average is 2-4 years or something like that. For me the insulin has been really good. I feel great on it and it's frankly nowhere near as bad to do the injections as I thought it would be. The finger pricks are worse, IMO.

It's interesting to know how your GP diagnosed you. My GP initially just assumed I was T2 (I was 34 at diagnosis) but another GP at the practice when I went to him with some poor health issues basically told me he thought I was T1 but needed a confirmation.

Unless your GP is red hot and you're very comfortable with them, I'd be asking for a referral to the nearest diabetic clinic as they are much better set up to support diabetics than GP practices usually are. As others have said, good luck and keep reading the forum for advice.

These are just some questions that I'd ask:

Is it definitely autoimmune? how do you know? What additional tests do I need?
What level of insulin production is my body still making? How can I preserve my beta cells?
If I'm LADA, when do you think I will need insulin? How can I prolong this?
What lifestyle changes should I be adopting? (Although this forum is good for this kind of stuff)
I would like to take control of my condition - how can I approach testing my blood glucose levels?
Should I be seen by the diabetic specialists?
What sort of other support is there? (specialist nurses, groups, information, foot checks, eye checks etc.)
If I have further questions - who can I speak to?

If at all possible, take someone else in with you who can take notes and discuss it with them afterwards.
 
Hiya there!

Welcome and try not to worry too much! Sounds like your GP is on the ball - like many others, I was diagnosed Type 2 until I became really ill after about a year, when they decided I was actually 1.5, probably LADA. I was 42 at the time. Had to fight for tests to prove it and am still awaiting results. Like you, I am not and never have been overweight (am now a little underweight as my weight plummetted when I took a lot of the carb out of my diet to control my BGs). I ended up on insulin within a year of diagnosis, and I was devastated. However, it is nowhere near as bad as you will fear! I actually feel much better on insulin as I can eat and still maintain my BGs - and there's no flatulence to deal with :lol: As a slim diabetic not on insulin, you might struggle to eat enough to maintain your weight but keep your BGs controlled. If this happens, don't struggle on - speak to a specialist about your options and accept insulin might be the answer - if you are LADA, insulin is inevitable within a few years, so an early move to it might actually be your best option - it has certainly been a relief for me.

There are a number of us Type 1.5s on the forum - we don't have our own area, but if you post into one of the general areas like this, someone normally comes along with help! You might find your BGs behave a bit differently to the Type 2s (mine were peaking much higher after food but going quite low between food), so don't get confused or downhearted by this. While you're on Metformin, the Type 2 members will probably be the best for advice, but once you go onto insulin, the Type 1s are probably the best source of advice. And if your question is Type 1.5 specific, just give us a shout! Good luck and let us know how you get on!

Smidge
 
I can concur with all of the others comments. While I was not overweight when diagnosed I have still lost a stone since last autumn from reduced carbing and regular exercise and now have stabilised at 10st 2lb.
I am still unsure whether I am type 1.5. Others have said that it doesn't really make that much difference as treatment is similar and to some extent I agree but in my case Metformin made no difference at all and gliclazide would send me too low so I am resigned to the fact that I will be on insulin at some point.....not good for a needle phobic!!!!....I find the finger pricks hard enough. :cry:
Anyway, good luck with your journey you are not alone. You will find many good and experienced people on here to help. :)
 
As another active normal weight adult diagnosed with diabetes (aged 30 years), I can concur that it's unusual, and being unusual meant medics didn't quite know what to do with me. The longer you can manage without insulin the easier for you, although once you need insulin, assuming you use basal blous regime, not inflexible bimodal regime, you can balance food intake / exercise / weather / infections / stress etc with insulin, so may have more freedom in that regard. I was diagnosed in 1996, when there was much less material on and access to the internet. I was initially put of bimodal insulin regime, and only found out about basal bolus when the Tasmanian pharmacist mother of a student midwife friend with whom I travelled in Belgium sent me a photocopy from her professional journal.

The bad news about diabetes and insulin is that is does restrict career choices - I had previously served as a TA nursing officer, gained a BSc Marine Biology, was training to become a SCUBA diving instructor in New Zealand, had just gained a driving licence, so had to return to UK, lost developing career in ecotourism, especially when DVLA took away my right to drive minibuses, lost chance to overwinter at Antarctic bases, just as BAS opened opportunity to women etc. However, I have been able compete in and marshal for adventure races, mountain marathons & orienteering races; lead a youth expedition to South Georgia; just about keep my head above water financially through a variety of jobs, learned to drive a tractor & trailer (never had to go on public roads) etc.
 
Hi sd!

I probably won't be much help on the technical advice side of things having only recently been diagnosed in January myself, but I just wanted to encourage you.

I had a similar experience to you. I am 39 and was with my daughter in South Africa where she was starting boarding school, I hadn't been feeling well, but put it down to the very stressful situation I was in. I did start to be worried about how quickly the weight was falling off me and I knew something was not right. I picked up a sinus infection on the plane over and went to the doctor who diagnosed T2 (because of my age) put me on metformin (1 per day). Boy, do I so totally understand your feeling - what the heck can I eat now - so landed up eating very little out of fear. Anyway, to cut a long story short, 2 days later I was rushed to hospital semi-conscious with acute diabetic ketoacidosis and my diagnosis was changed to type 1. I was then told about type 1.5 by a diabetologist I saw, who said, I could be type 1.5, but that speed of onset was unusual. I'm not telling you this to scare you, and as I said, I am new to this so don't even know if my experience was unusual or not, but just keep a very careful watch of yourself and how you are feeling - I was fortunate as I was staying with my mum and sister who are both nurses, but to answer your question, yes, you must take the diagnosis seriously.

One valuable bit of advice I followed, was to take the time to read, read, read about it, and, I am not sure if this bit is applicable while on metformin but, the more diligent you are in the beginning about keeping food diaries, and insulin doses, the easier it becomes down the line and the more flexible you can be. The GOOD news (even though it may not feel like it for you right now) is that it DOES get easier, it IS manageable. It is a total pain in the behind and an inconvenience but you only need to look around at this forum and see how much support there is out there. I also took inspiration from Sir Steve Redgrave who was only diagnosed the 3 years before winning his 5th gold - I liked his outlook in that he said he decided very early on after diagnosis, that the diabetes was going to have to live with him not him live with diabetes.

Good luck, and take care!
 
Hi again SD!

I was thinking about this earlier, and thought I'd just let you have my slight concern with your medication and diagnosis. If you are 1.5 (probably LADA) and quite slim and active, you are unlikely to have much (if any) insulin-resistance - your doctor presumably realised that as he/she didn't diagnose you as Type 2 (as they usually do). So far, so good. However, you have been put on Metformin, which I believe is a drug that makes your cells more receptive to insulin. I'm no expert, but I believe this is more appropriate to insulin-resistant people (usually Type 2). As 1.5 (LADA) you could have some insulin-resistance, but it is far more likely you are insulin-deficient i.e. not producing enough insulin. The drug of choice in that situation is usually Gliclazide whcih encourages your pancreas to produce more insulin. (There is much debate as to whether this is a good thing, but nonetheless, it is the usual drug for insulin-deficient diabetics.)

When you next see your doctor, you could ask whether he/she believes you ar insulin-resistant or insulin-deficient. If you are not insulin-resistant, I don't think the Metformin will work for very long if at all. Hopefully one of the Type 2s who use Metformin will be along in a bit to comment on Metformin in case I'm wrong about it. Anyway, worth asking your doctor.

Take care

Smidge
 
When you next see your doctor, you could ask whether he/she believes you ar insulin-resistant or insulin-deficient. If you are not insulin-resistant, I don't think the Metformin will work for very long if at all. Hopefully one of the Type 2s who use Metformin will be along in a bit to comment on Metformin in case I'm wrong about it. Anyway, worth asking your doctor
Click to expand...
A cochrane review said few years ago said that there was no good evidence for the best treatment for LADA before insulin becomes essential..It suggested that sulphonylureas could make patients insulin dependent sooner.
http://www2.cochrane.org/reviews/en/ab006165.html
Metformin works in several ways. It surpresses the release of glucose from the liver, this is one of the functions of insulin so it can help by adding to the action of natural insulin in those that are deficient. It also decreases the amount of glucose aborbed in the colon, so less arrives in the blood stream..again of benefit to people who are insulin deficient. Lastly it aids insulin sensitivity so less insulin is needed to deal with glucose. It seems to be widely used for LADA but I still don't think there is any real evidence about it.
In some parts of the world, they use insulin from the outset, this was the case with me, but I left things for rather too long before going to the doctors.
One thing that's important to know (if it is LADA of course) is that in general it seems that the younger you are, the shorter the period of time between diagnosis and insulin being needed. It really is important to keep a check on glucose levels and contact your doc quickly if you start seeing high levels.
As others have said, it's good that your doctor is on top of things as very many aren't. Personally, I was very glad when I was eventually diagnosed and went onto insulin. I felt so much better.I hadn't realised how ill I had been feeling. It motivated me to take control. As the last poster said, it has been useful to learn as much as possible as to what is happening in my body and how to use insulin effectively, it makes things much easier to manage.
When I was diagnosed I realised that there were people with T1 who were competing at international level in several spots so I became determined not to let it stop me doing the things I wanted (luckily it had no career implications for me as I was in my 50s). I completed the London marathon last week... something I promised myself I would do soon after diagnosis and enjoy long distance walks, skiing and the odd cycle ride.
 
Thanks everyone again for amazing advice and responses. Now on insulin as I ended up with blood sugar at 29.8 and a little unwell! Bit of a nightmare, however using a basal bolus regime as opposed to the metformin, gliclazide and the joy of enalapril for kidneys (apparently I needed that too..) has really turned things around, still adjusting dose etc, but WOW! I understand why they try to keep you off insulin as long as possible, but the difference in the way I feel is just, well, incredible! Feel like me again.

Thanks again :)
 
Hi SD,

Glad you're getting sorted out. I did doubt that Metformin would work for you for very long if at all. Injecting isn't too bad - you get used to it. Just be aware that after a couple of weeks of taking insulin, your pancreas might decide to work a bit better again and give you a big dose of your own insulin - that's what happened to me and I had to keep reducing my dose to avoid hypo. Type 1.5 is a bit difficult like that - some days are what I refer to as 'good pancreas days' and some are 'bad pancreas days'. All you can do is make sure you test frequently so you can adjust your doses. never assume you know what your BG is doing - it's pretty unpredictable in type 1.5!

Glad you feel more like yourself again - I know exactly what you mean!

Smidge
 
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