Hi, T1.5 heading towards insulin?

[AndyH]

Hi everyone.

I'm new to the forum but have been T2 for about 15 years. Was diet/exercise controlled until last year. Things progressed, my HbA1 got worse and my fasting levels got really bad (over 9.0). Now on Glic and Linagliptin and on a moderate carb diet (150/200g per day). I do a reasonable amount of exercise, I swim, cycle or run 5 or 6 times a week. This worked for while, but things have started to slide a bit again. Fasting levels are now back over 8.0, I have the odd post prandial of over 10.0, but I also have occasional hypos.

When I asked if I was now a T1.5 my GP didn't respond, however my nurse says yes.

I had the bloods taken this week for my annual review next week. My GP is reluctant to raise the Glic dosage as worried about increased hypos, and wants me to continue with exercise (so do I). The last time I saw him he said that he would refer me on if I wished, but felt I would end up on insulin.

So does it look like insulin is the next step? If it is how likely is it that I'd be able to get a pump?

Any thoughts greatfully received.

Andy

 

[AlisonM]

If you're LADA then the correct blood tests would establish that. You'd need the GAD and c-peptide tests as a minimum, without those you cannot know if you are T1.5 or not. If you are you really should be on insulin already. LADA, or Latent Autoimmune Diabetes in Adulthood is basically slow onset Type 1 and T2 meds won't work long term. Take me, I was diagnosed T2 in 2009 then re-diagnosed 6 months later and put on insulin. I still produce some insulin of my own, though less and less as time passes.

There may be indicators in your history or your families that can provide clues. For instance, is there a history of T2? Are there any T1s? Do you have any other autoimmune conditions such as Rheumatoid Arthritis or Coeliac?

Time to do some research and then start nagging your GP for the tests. But you should be aware that it may simply be the progression of the disease as it affects you, many T2s do need insulin eventually.

Hope that helps.

 

[Northerner]

Hi, welcome to the forum 🙂 I think it is unlikely that you are Type 1.5, given the length of time you have been diagnosed, although the fact you were diet-contolled until a year ago does muddy the waters! Although T1.5 is a slow-onset variant of Type 1, it usually progresses to requiring insulin within 12-18 months. It may be, as Alison suggests, simply the gradual failure of your beta cells to produce insulin over the past year or so - this decline may be being accelerated by the medications which are designed to stimulate more insulin production, and does appear to be losing its efficacy, unfortunately, so insulin is most likely the next step. Hopefully, however, this will give you more control and better numbers, and more flexibility in your life generally. Although still a blunt tool in comparison too a fully-functioning pancreas, insulin can be much more finely-tuned than oral meds.

The problem you may find in trying to get a pump will likely be your long classification as a Type 2. Regardless of requirements, guidelines don't normally allow funding of pumps for Type 2s.

However, we are all different and things aren't as clear cut as just a handful of different types, the main criteria should be whether you meet the other criteria for a pump, not just a nominal 'Type' of diabetes, so much will depend on the knowledge of your healthcare team. Most GPs are unlikely to know the ins and outs of pumps, so if you do go onto insulin then you'd be better off getting referred to a consultant-led clinic 🙂

 

[AndyH]

Thanks for your replies. You have cleared up my confusion over the differences between T1 and T2, I just thought that T1 was a possible endgame of T2.

As far as my case goes, I don't have any autoimmune conditions, and there is a history of T2 in the family but I have never been obese. So I guess a pump is unlikely.

So I guess the issues for me is, do I carry on as I am, trying to control my levels with a combination of diet, meds and exercise, possibly storing up problems for later. Or should I be pragmatic and accept that it may be the time to accept that insulin is the way forward and that things may change.

I believe that my GP was offering a referral to a consultant led clinic. On the whole I am quite happy with the care I get from my GP/Nurse.

Andy

 

[Northerner]

There's no reason why you should stop seeing your GP and nurse for most things Andy, but seeing a consultant every now and then might present possibilities your GP isn't aware of, and would more familiar with the different insulin regimes etc.

There is something that may work for you called Byetta (another manufacturer calls their version Victoza) - some of our members have had good success with them as an alternative to insulin. These are injectables (once or twice a day - there is also a weekly version called Bydureon). They are basically 'lizard spit' (!!!) - they mimic the effect of the Gila Monster's saliva on blood glucose levels 🙂 Perhaps something you could ask your GP about, they would probably be instead of the Gliclizide and carry lower chance of hypos 🙂

 

[AndyH]

Hi Northerner, thanks for the reply.

I guess the general term for them is incretin mimetics, which I have seen on Diabetes UK, but assumed that my GP felt they weren't appropriate for me. I'll ask nursey on Monday.

When I told the nurse that wine lowered my fasting sugar levels she suggested wine every night, but when I told her how much It took she changed here mind.

I guess that what I want, is to feel that I am in control, for my condition to have little impact on my lifestyle, and I'm not sure if that is possible for me if I was on insulin, think I might feel like my condition is controlling me. I've already given up on spontaneous sports activity, if I'm going out on my own I now have to take sports gels and mobile phone, and tell OH where I'm
going and how long I'll be, and OH isn't keen on me swimming on my own.

It'll be interesting to see what my HbA1 is. I wouldn't be surprised if it was OK. If it is, not sure what to do knowing that my highest recently recorded level was 14.5 and my lowest was 3.4.
If I go for referral I believe the consultant is an enthusiastic sportsman and is keen to keep patients as active as possible.

Andy