LADA

[Nikki72]

Hi everyone.
I've never been on forums before but reading some posts I'm hoping I can tap into all your knowledge!

I was diagnosed with type 2diabetes nearly 2 years ago. After initially being prescribed gliclizide I then managed through diet alone. All seemed ok but I noticed some of my initial symptoms returning about 3 months ago. After a couple of random bg tests 20+ and checks for ketones in urine, I was tested for GAD antibodies and was told I have LADA. To be honest this is when things go downhill!

I was started on metformin sr, building up to 4 tablets a day. This was meant for the interim period until I could see the specialist team. (Monday just gone) This medication seems to really disagree with me. I suffered horrendous abdominal pain and diahorrea, to the point I couldn't work. BG much better around 7-9. I've been to the doctors so many times. Initially told to persevere but eventually told 2 weeks ago to reduce to 2 tablets a day (2×500mg). I was also prescribed rapaglinide. I didnt take this due to concerns about it's use for LADA. My abdominal issues are still there.

On Monday the community specialist doctor basically said insulin is the only way forward. Agreed rapaglinide wasn't the right medication. This is where I get completely confused. The doc suggested pioglitzone instead of metformin for a period of a month or so whilst I got mentally prepared for insulin. He couldn't prescribe the tablets and told me to go to my GP today for the prescription. Yesterday the pains in my abdomen got worse. I've tried to get an appointment at my GPS surgery and I can't. I have taken it upon myself to stop metformin today as I feel so ill. My bg has ranged from 10 when I got up to 7 before lunch and 12.2 2 hours after lunch. I am concerned about how yuk I feel, lack of help from my GPs surgery (cant book an appointment for tomorrow, just got to wait for an emergency appointment like today so no guarantee I will get one!) and terrified about the way forward particularly as I'm supposed to be going away to Ibiza on Tuesday.

Long story I know. I just need to know if I'm missing something obvious. I feel I need to cancel my holiday but would have a disappointed family. I feel in total limbo and have no idea what to do. I'm guessing I'm by no means the only one who has been here so any advice would be appreciated. 🙂

 

[Robin]

Hi Nikki, welcome to the forum. A few random thoughts, in no particular order.
If you go on holiday without any medication, and are taken ill, your insurance may not cover you if you haven't kept them up to date with your change of diagnosis. If you tell them, they may give you cancellation as the only option. ( you may have an EHIC card, but Spain can be norotorious for carting you off to a private hospital without your say so, and it doesn't cover repatriation, so insurance is a must, in my opinion)
Your family won't have a very good holiday if you are struggling with high sugars the whole time. Might it be better to cancel, and either book something in the UK where you can get to an A and E if your levels shoot up, or book a holiday say, October half term, when you've had time to get your insulin sorted.
I'd say you need to prioritise getting your insulin, and your health, sorted. You probably don't realise how awful you've been feeling. I felt so much better when I got onto insulin, (after a misdiagnosis of Type 2, and failed Type 2 drugs) I hadn't realised how ill I'd been.

 

[Nikki72]

Hi Nikki, welcome to the forum. A few random thoughts, in no particular order.
If you go on holiday without any medication, and are taken ill, your insurance may not cover you if you haven't kept them up to date with your change of diagnosis. If you tell them, they may give you cancellation as the only option. ( you may have an EHIC card, but Spain can be norotorious for carting you off to a private hospital without your say so, and it doesn't cover repatriation, so insurance is a must, in my opinion)
Your family won't have a very good holiday if you are struggling with high sugars the whole time. Might it be better to cancel, and either book something in the UK where you can get to an A and E if your levels shoot up, or book a holiday say, October half term, when you've had time to get your insulin sorted.
I'd say you need to prioritise getting your insulin, and your health, sorted. You probably don't realise how awful you've been feeling. I felt so much better when I got onto insulin, (after a misdiagnosis of Type 2, and failed Type 2 drugs) I hadn't realised how ill I'd been.

Hi Robin

Thank you for replying. You said what I've realised really, just burying my head.

I am beginning to feel insulin is the light at the end of the tunnel. I do feel permanently not right but it's the not knowing from one day to the next just how awful I'll be. One day not so tired, mild abdominal pain and another can't get out of bed yet done nothing different!

It is good to hear that insulin helps so much from someone who has been there.

 

[TheClockworkDodo]

Insulin helps a huge amount, Nikki, and I can't think why they haven't put you on it already. No-one with straightforward type 1 has time to get mentally prepared for insulin - so I'm not sure why they think someone with type 1.5 would need mental preparation more than they need insulin! And unlike Metformin (which is notorious for causing stomach problems) insulin very rarely has side effects. When I was diagnosed I was so pleased they worked out right away that I was type 1 and put me on insulin rather than Metformin, as I had friends on Metformin, and they had a horrible time with it too.

If your blood sugar goes up higher and/or you feel any worse, please go to A&E and ask to see a diabetes specialist rather than going back to your GP. And I agree with Robin about the holiday - if you can postpone it do, you really aren't well enough to take it now.

 

[KARNAK]

Hi @Nikki72 Welcome to the Forum🙂. As Robin and Juliet have given you good advice there`s not a lot more to say. Other than I don`t know why you are not on insulin already! I hope you get the correct treatment A.S.A.P. and that you will feel much better. Take care and keep us informed/updated.

 

[Alister]

I am beginning to feel insulin is the light at the end of the tunnel.

It has certainly worked wonders with my Type 2, LADA from my limited knowledge is effectively Type 1 so I can see that any of the drugs were ever going to help with this. I took me less than 10 minutes to get taught how to use my insulin pen (admitidley I am only on a basal so dont have to wory about bolus calculations), how much oprep do they realy think it needs.
home things sorted quickly

Feb 2018 HbA1c 107 - July 2018 HbA1c 38

 

[Northerner]

Insulin helps a huge amount, Nikki, and I can't think why they haven't put you on it already. No-one with straightforward type 1 has time to get mentally prepared for insulin - so I'm not sure why they think someone with type 1.5 would need mental preparation more than they need insulin! And unlike Metformin (which is notorious for causing stomach problems) insulin very rarely has side effects. When I was diagnosed I was so pleased they worked out right away that I was type 1 and put me on insulin rather than Metformin, as I had friends on Metformin, and they had a horrible time with it too.

If your blood sugar goes up higher and/or you feel any worse, please go to A&E and ask to see a diabetes specialist rather than going back to your GP. And I agree with Robin about the holiday - if you can postpone it do, you really aren't well enough to take it now.

Hi Nikki, all this messing about with oral medications is a nonsense You have a diagnosis and the treatment is insulin, I really don't understand the delay! This comment about 'preparing you mentally for insulin' is just silly - no-one 'prepared' me, or indeed any of the thousands of others who have been diagnosed Type 1, or Type 1.5 with blood sugar levels not being helped by oral meds.

The timing is very unfortunate, regarding your imminent holiday I'm not sure what would be more difficult for you - going away on your current medication or starting on insulin and then being away from sources of help as you get to grips with it. I think you need to insist on an emergency appointment, this isn't a routine situation you are in. Your numbers aren't great, but they aren't currently dreadful, so you might be able to manage without the insulin if you keep your carb consumption to a minimum whilst you are away, and stay active and well-hydrated. No amount of oral medication will help if your pancreas is no longer producing sufficient insulin to meet your needs. You say you are waking at about 10 mmol/l, how does that compare to your bedtime reading?

 

[HOBIE]

Welcome Nikki 72 🙂

 

[SB2015]

Hi Robin

Thank you for replying. You said what I've realised really, just burying my head.

I am beginning to feel insulin is the light at the end of the tunnel. I do feel permanently not right but it's the not knowing from one day to the next just how awful I'll be. One day not so tired, mild abdominal pain and another can't get out of bed yet done nothing different!

It is good to hear that insulin helps so much from someone who has been there.

Hi Nikki

Have you made any progress with getting appropriate treatment? As others have said, if you are T1 no amount of oral medication is giong to solve the problem. You need insulin and your pancreas is not going to be making it for you, so you need to inject.

The lack of insuiln will make you tired, very thirsty, using the toilet all the time and get thinner. All the symptoms that you have been describing.

Let us know how you are getting on.