Newly diagnosed C peptide test

[halph]

Hello everyone, was put on insulin last Friday (16 lantus and 3 x daily nova rapid, having had a bs level of upper 20s, had lost weight mainly muscle mass. The diagnosis has completely knocked me off my feet and sent me spiralling into a pretty poor emotional state.

I’m 39 and very active sports person with low bmi and good diet.

I have been informed Im likely type 1 but sent off for a C peptide testing on Monday to determine exactly if I’m type 1 or type 2 but to expect the worst of those scenarios.

I take that given my weight I will be most likely be type 1 but have been reading about new drugs for those with functioning beta cells in early diagnosis (10 weeks and earlier) . and show promising results where they can perhaps even delay the onset of type 1 through use of these drugs. (Verapamil and GABA to name a couple)

Is this something my consultant will discuss with me or are they still clinical trials?

I know I’m clutching at straws here, hoping for something that will let this not be a permanent t1 diagnosis but I can see that hope fading quickly. If it means volunteering for clinical trials, I’ll do whatever it takes.

Any advice or information and links greatly appreciated.

 

[In Response]

As i was diagnosed a few years ago, I do not know much about these drugs except that what I have read suggests they may only postpone the final destruction of your insulin producing cells but not halt it.

That does not mean your hope should fade. The best advice I was given when diagnosed with Type 1 in my 30s whilst a very active sports person with a low BMI and good diet was "Diabetes should not stop you doing what you want." It hasn't: I am still an active sports person with a low BMI and a good diet.

There are professional rugby players such as Henry Slade and Chris Pennel, professional footballers such as Nacho, a whole team of professional cyclists (Team Novo Nordisk). a mountain climber, indy car racer, baseball player, swimmer, .... all doing very well in their sports with Type 1 diabetes. There is a website (runsweet.co.uk) which is dedicated to helping people with Type 1 diabetes and their sport.

It is understandable to be, effectively, in mourning when first diagnosed but Type 1 diabetes is not the death sentence it used to be and doesn't need to limit your lifestyle.

 

[Juicyj]

Hello @halph

It is a great shock getting the diagnosis, I ended up getting involved in a JDRF research programme with C Peptide at Bristol Hospital within 6 months of being diagnosed, it was vital time spent there as I was able to talk to specialists and received advice about managing my type 1 status, I received a placebo so had no impact at all, however I wasn't particularly bothered as it was worth doing it. I doubt very much your consultant will advise you about this as it they may not be aware of any current research, however have a look at the JDRF site to see if there is any current research programmes you can get involved in.

My personal advise is to become an expert, learn as much as you can but take your time too, your body and your insulin needs will change greatly over the year or so, talk to others and don't bottle feelings, it does become second nature in time, so best of luck and don't be afraid to ask questions

 

[TypeZero.]

Hello everyone, was put on insulin last Friday (16 lantus and 3 x daily nova rapid, having had a bs level of upper 20s, had lost weight mainly muscle mass. The diagnosis has completely knocked me off my feet and sent me spiralling into a pretty poor emotional state.

I’m 39 and very active sports person with low bmi and good diet.

I have been informed Im likely type 1 but sent off for a C peptide testing on Monday to determine exactly if I’m type 1 or type 2 but to expect the worst of those scenarios.

I take that given my weight I will be most likely be type 1 but have been reading about new drugs for those with functioning beta cells in early diagnosis (10 weeks and earlier) . and show promising results where they can perhaps even delay the onset of type 1 through use of these drugs. (Verapamil and GABA to name a couple)

Is this something my consultant will discuss with me or are they still clinical trials?

I know I’m clutching at straws here, hoping for something that will let this not be a permanent t1 diagnosis but I can see that hope fading quickly. If it means volunteering for clinical trials, I’ll do whatever it takes.

Any advice or information and links greatly appreciated.

Unfortunately doctors will not prescribe anything that has not been through clinical trials (Phase 1, 2 and 3) and received recommendation for type 1s from NICE (regulatory group that sets guidance for medics)

Us type 1s are even rejected approved drugs because they have been tested in type 2s and not 1s. I would consult with your doctor about alternative treatments but they’re going to be dead against it so no point.

I tried GABA before, made no difference. The issue is once you’ve experienced a few hypos and know how bad they feel you don’t even want to experiment with any alternative treatments incase they cause you to go low. I was in a similar position when first diagnosed (April 2020) I was going out of my mind, reading dozens of scientific papers a day (I have a science background).

You realise in the end there’s nothing you can do apart from try to get the available medication/technology

 

[halph]

As i was diagnosed a few years ago, I do not know much about these drugs except that what I have read suggests they may only postpone the final destruction of your insulin producing cells but not halt it.

That does not mean your hope should fade. The best advice I was given when diagnosed with Type 1 in my 30s whilst a very active sports person with a low BMI and good diet was "Diabetes should not stop you doing what you want." It hasn't: I am still an active sports person with a low BMI and a good diet.

There are professional rugby players such as Henry Slade and Chris Pennel, professional footballers such as Nacho, a whole team of professional cyclists (Team Novo Nordisk). a mountain climber, indy car racer, baseball player, swimmer, .... all doing very well in their sports with Type 1 diabetes. There is a website (runsweet.co.uk) which is dedicated to helping people with Type 1 diabetes and their sport.

It is understandable to be, effectively, in mourning when first diagnosed but Type 1 diabetes is not the death sentence it used to be and doesn't need to limit your lifestyle.

Thanks for the reply that’s exactly how I feel, pretty much grieving. Perhaps the sport is what has kept it at bay so long, I’m just absolutely devastated.

 

[halph]

Hello @halph

It is a great shock getting the diagnosis, I ended up getting involved in a JDRF research programme with C Peptide at Bristol Hospital within 6 months of being diagnosed, it was vital time spent there as I was able to talk to specialists and received advice about managing my type 1 status, I received a placebo so had no impact at all, however I wasn't particularly bothered as it was worth doing it. I doubt very much your consultant will advise you about this as it they may not be aware of any current research, however have a look at the JDRF site to see if there is any current research programmes you can get involved in.

My personal advise is to become an expert, learn as much as you can but take your time too, your body and your insulin needs will change greatly over the year or so, talk to others and don't bottle feelings, it does become second nature in time, so best of luck and don't be afraid to ask questions

Thanks, I’ve already contacted them about one of their programmes and tried to get my daughter screened through another scheme, I think it’s just that grief phase of bargaining and denial I’m currently in. thanks for your supportive words. Really appreciated

 

[halph]

Unfortunately doctors will not prescribe anything that has not been through clinical trials (Phase 1, 2 and 3) and received recommendation for type 1s from NICE (regulatory group that sets guidance for medics)

Us type 1s are even rejected approved drugs because they have been tested in type 2s and not 1s. I would consult with your doctor about alternative treatments but they’re going to be dead against it so no point.

I tried GABA before, made no difference. The issue is once you’ve experienced a few hypos and know how bad they feel you don’t even want to experiment with any alternative treatments incase they cause you to go low. I was in a similar position when first diagnosed (April 2020) I was going out of my mind, reading dozens of scientific papers a day (I have a science background).

You realise in the end there’s nothing you can do apart from try to get the available medication/technology

understood, absolutely gutting. It’ll just take time to let it all sink in I guess.

 

[Juicyj]

Thanks, I’ve already contacted them about one of their programmes and tried to get my daughter screened through another scheme, I think it’s just that grief phase of bargaining and denial I’m currently in. thanks for your supportive words. Really appreciated

Yes I went through that, I even thought I could prolong the honeymoon if I kept it under control as much as possible, and got involved in the research as I was willing to do anything to protect my little ole beta cells, I also suffered burn out and depression after the bargaining phase and meditation helped greatly with that. I now run 3-4 times a week and did my first marathon last year - that helps keeps me sane these days.

 

[becca59]

Personally I just felt so ill on diagnosis that I was grateful there was insulin to help me. Plus I found those remaining cells were a nightmare in getting to grips with the management of this complex condition. I was glad when they died off and I became more stable.

 

[Rhys.]

Hey Halph,

Welcome to the forums buddy. My diagnosis came in April 2020 and like you, was a complete shock to the system. I played football and worked out regularly, but was desperate at the time for a type 2 diagnosis, even though every person at the hospital was adamant I was type 1. Eventually, there were right after antibody results, which you may have or will receive! You are not alone

I think some other members here are better equipped with info than me on other things, however the emotional state you talk about, is extremely important. Whatever Anger, Sadness, Guilt or Fear that comes up, allow it to come through, experience it and learn to balance it out. One of THE most important things with a Type 1 Diagnosis, is mental health. Don't allow these emotions, to eventually lead to any form of Anxiety or Depression buddy. You can smash this and enjoy your life!!

I completely agree with @TypeZero. I spent months researching and finding tiny glimmers of hope in places, but eventually came to the conclusion that science is still not quite there yet, but they are trying. I personally hope that these new medicines that come through, can help stop the destruction and eventually cure us all together, but personally feel we are years away yet.

What you " may " encounter in a short while ( most probably around the 3 month mark ) is a honeymoon period, where you will take less insulin or even none at all. This can happen, once your remaining BETA Cells have had some much needed rest thanks to Injectable Insulin and will decide to kickstart again for one last time.

The Type 1 community will need volunteers and patients, to trial new drugs and new strategies to both prevent and cure Diabetes in the near future. If you decide to throw your name into the hat to do this, you have the gratitude and thanks from me and no doubt everyone here.

But remember, don't pressure yourself too much. Work on fixing your emotional experiences and blood sugars first, then maybe look to helping our cause once the dust settles. Make yourself and your health both physically and mentally a priority for now mate.

All The Best!

 

[EllieM]

I was glad when they died off and I became more stable.

Yes, I've always wondered whether the honeymoon period is a help or a hindrance. I assume it can help mitigate spikes but on the other hand it can't be easy to have to keep adjusting your dose because your endogenous supply of insulin is fluctuating.

Nothing I can do to help with the emotional and acceptance part of such a devastating diagnosis, but I will point out that diabetes is one of the few chronic conditions where the sufferer has much more control than the doctors. And the technology to help you control your bgs is out of this world compared to what it used to be, leading to infinitely better outcomes for today's newly diagnosed diabetics.

Pumps and cgms aren't truly at the closed loop stage yet, but the technology is getting better, and diabetes certainly shouldn't stop any sporting activities that I can think of.. OK, not sure if I would be brave enough to do potholing, with or without diabetes, and Everest would just be stupid....

 

[halph]

Thanks Rhys, powerful words my man, I really hope there is a cure developed in coming years. I can’t believe this had been a ticking time bomb inside me all of these years just waiting to shows it’s face at 39, some evidence pointing towards covid (I’m not sure about that but interesting data). If they can develop covid vaccine in 12 months no reason why they can’t develop cure for diabetes, let’s hope the long covid data catches up and allows for nee funding in developing something.