Struggling with Novomix 30

[maryholl]

I was diagnosed Type 2 about 8 years ago but, being thin and active, was put on insulin very quickly as tablets and diet did not work. I am still on Metformin and Alogliptin though. Had been on Tresiba with moderately good results but experienced highs after meals and night time hypos so GP has recently put me om Novomix 30. Started on a low dose but had to increase quickly as BG went very high (120+). Had standardised on 30 units in the morning and 25 in the evening but suddenly this seems too much and I am experiencing hypos. I think this goes to show that I don't really know what I am doing! I don't carb count, perhaps I should? Just a bit troubled really and will reduce dosage again to see if that helps. DSN has recommended that I go to the local diabetes clinic for full tests and advice but GP disagrees and thinks I'm fine. Impasse!

 

[Kaylz]

Hi and welcome to the forum 🙂

May I ask, did they give you a reason of why they swapped you from a basal insulin (Tresiba) to an intermediate mixed insulin rather than just allowing you to stay on Tresiba and adding a fast acting insulin to use for your meals?

As it's a mixed insulin you should be eating at pretty much the same times each day and the same amount of carbs at meals per day as its mixed so covers eating but also when your not eating

If I were you I'd ask if it would be possible for you to go back to Tresiba and add a fast acting insulin, this way you could learn to count carbs and adjust the fast acting insulin to cover your carbohydrate intake, it takes time but a basal/bolus regime that I'm talking about is by far more flexible than being on a mixed insulin
xx

 

[Robin]

DSN has recommended that I go to the local diabetes clinic for full tests and advice but GP disagrees and thinks I'm fine. Impasse

Well, you’re not fine, are you, so your GP is just wrong! Has your GP ever considered that you might be Type 1, not Type 2? If she/he thinks this is impossible at your age, as many GPs do, cite Theresa May and Sir Lindsay Hoyle as two examples of people who developed Type 1 well into middle age.

 

[Ljc]

Hello @maryholl . Welcome to the forum. I am sorry to hear you are having such problems . TBH I agree with your nurse in referring you to the specialists for further testing and to get appropriate treatment. Their are many types of diabetes and some initially respond to T2 meds then they eventually stop working and insulin is needed.

Sadly many GPs no matter how good they are actually have often had very little training in diabetes care/treatment , may not be up to date with current practice. And to me it sounds as though you need the expertise of the specialists.

I must say I agree with @Robin

 

[Toucan]

Hello Mary, and welcome to the forum.
As you will see from the replies you have already got, there is a lot of knowledge and support available here.
I agree with Robin and Lin that you need more help from the medics to find a better solution.

If you do decide that you want to look at low-carb or other diabetic eating plans then there is plenty of information on the forum and on the general diabetes site. (There is a thread on help for Newbies on the 'Newbies' heading of the forums list.)
There are plenty of us here who are following such plans, so please ask if you would like more information.
Best wishes, and we would be interested to know how it goes.

 

[maryholl]

Hi and welcome to the forum 🙂

May I ask, did they give you a reason of why they swapped you from a basal insulin (Tresiba) to an intermediate mixed insulin rather than just allowing you to stay on Tresiba and adding a fast acting insulin to use for your meals?

As it's a mixed insulin you should be eating at pretty much the same times each day and the same amount of carbs at meals per day as its mixed so covers eating but also when your not eating

If I were you I'd ask if it would be possible for you to go back to Tresiba and add a fast acting insulin, this way you could learn to count carbs and adjust the fast acting insulin to cover your carbohydrate intake, it takes time but a basal/bolus regime that I'm talking about is by far more flexible than being on a mixed insulin
xx

The GP swapped me because I was getting high levels after eating (as high as 120) and night hypos. After waking up a 3am several times with a BG of less than 20 I went to her to express concerns. I wasn't given any options or explanations, just prescribed the Novomix. Looking at yours, and the other responses, I shall make an appointment to see her again.

 

[maryholl]

I have always felt that I am not straightforward type 2. To my mind, I show more symptoms of LADA but my GP disagrees.

 

[rebrascora]

Hi Mary and welcome.
If the Metformin and diet did not work and you were put on to insulin very quickly then I would say that you are almost certainly Type 1 rather than LADA, but either way you should be getting some investigative tests to establish which type you really are, as it makes a significant difference to what treatment, equipment and support you are entitled to. Under NICE guidelines you should be on a basal/bolus insulin regime if you are Type 1 and that should help you to manage your levels better. If your doctor is not prepared to refer you to a consultant then you might consider changing your doctor or the practice. Perhaps negotiate Type 1 testing (GAD antibody and C-peptide tests) if the doctor will not refer you to the specialist clinic. I had to go to the hospital for these tests as the blood needed to be refrigerated within a short space of time before testing. You might also ask why he is so adamant that you are Type 2 when you have not responded to Type 2 oral medication and are slim and active. As others have said, many doctors have been told in basic training (usually many moons ago) that Type 1 only exhibits in children but that is not correct. I am one of the many people who develop it in later life. I am 55 and was diagnosed Feb last year..... initially thought to be Type 2 but didn't fit the usual parameters and eventually got tested in June and Type 1 confirmed in early July.
Your current Insulin regime is clearly not working for you although the numbers you are using for BG are not the norm here in the UK. I wonder if you life elsewhere or have your meter set on the wrong scale. A BG reading of 20 would be considered very high not low.... or perhaps you mean 2.0 A reading of 120 would normally be a high HbA1c reading as you would be dead if your BG was that high..... so perhaps you mean your BG was 12mmols?? Or....maybe the decimal place on your meter is broken???

 

[maryholl]

Hi Mary and welcome.
If the Metformin and diet did not work and you were put on to insulin very quickly then I would say that you are almost certainly Type 1 rather than LADA, but either way you should be getting some investigative tests to establish which type you really are, as it makes a significant difference to what treatment, equipment and support you are entitled to. Under NICE guidelines you should be on a basal/bolus insulin regime if you are Type 1 and that should help you to manage your levels better. If your doctor is not prepared to refer you to a consultant then you might consider changing your doctor or the practice. Perhaps negotiate Type 1 testing (GAD antibody and C-peptide tests) if the doctor will not refer you to the specialist clinic. I had to go to the hospital for these tests as the blood needed to be refrigerated within a short space of time before testing. You might also ask why he is so adamant that you are Type 2 when you have not responded to Type 2 oral medication and are slim and active. As others have said, many doctors have been told in basic training (usually many moons ago) that Type 1 only exhibits in children but that is not correct. I am one of the many people who develop it in later life. I am 55 and was diagnosed Feb last year..... initially thought to be Type 2 but didn't fit the usual parameters and eventually got tested in June and Type 1 confirmed in early July.
Your current Insulin regime is clearly not working for you although the numbers you are using for BG are not the norm here in the UK. I wonder if you life elsewhere or have your meter set on the wrong scale. A BG reading of 20 would be considered very high not low.... or perhaps you mean 2.0 A reading of 120 would normally be a high HbA1c reading as you would be dead if your BG was that high..... so perhaps you mean your BG was 12mmols?? Or....maybe the decimal place on your meter is broken???

Hi Barbara
Thanks for your detailed response. I have already booked another appointment with my GP and intend to go much better armed with information. I asked for a GAD test some months ago but was 'fobbed off'. Changing my GP isn't an easy option as I live in a rural area so there isn't really any choice and, for general things, they are very good. We had an experienced diabetic GP but she retired and the new one is straight out of training and still learning about the condition. I think this may be the root of the problem. I've probably got my scales wrong. My meter actually measures in the 'old' units but I see everyone here uses mmol/mol so I found a conversion chart - obviously not the right one!! Basically my highs were as high as 20 and my hypos go down to 2.8. I hope that makes a bit more sense. As you can see, I still have a lot to learn.

 

[everydayupsanddowns]

Hi Barbara
Thanks for your detailed response. I have already booked another appointment with my GP and intend to go much better armed with information. I asked for a GAD test some months ago but was 'fobbed off'. Changing my GP isn't an easy option as I live in a rural area so there isn't really any choice and, for general things, they are very good. We had an experienced diabetic GP but she retired and the new one is straight out of training and still learning about the condition. I think this may be the root of the problem. I've probably got my scales wrong. My meter actually measures in the 'old' units but I see everyone here uses mmol/mol so I found a conversion chart - obviously not the right one!! Basically my highs were as high as 20 and my hypos go down to 2.8. I hope that makes a bit more sense. As you can see, I still have a lot to learn.

Hello Mary

Really sorry to hear about the struggles you are having, and I completely agree with the others who have said that

a) your current treatment clearly isn’t working for you, and

b) you would benefit from being seen by a specialist hospital department who have more expertise in unpicking the clinical factors in less usual diabetes cases.

I also agree that T1 is certainly not limited to children. In fact 50% of cases are diagnosed in adulthood, including mine!

Hope you can get your referral, and keep us posted with what happens.

 

[maryholl]

Thank you again to everyone who responded. Some asked for an update so... in desperation I went back on to Tresiba which, although there are some problems with it, they are manageable in the short term and things have calmed down a bit although I am still low in the mornings. I finally got to see a different GP yesterday (takes 3 weeks+ now for an appointment) and she had no issues about re-prescribing Tresiba and sending me to the local diabetes clinic for a proper consultation and tests. I go on 4th March. I feel a great relief in that, at last, someone with real expertise is going to look at me and give me the advice I clearly need. I was initially diagnosed in 2012 and spent 2 unsuccessful years on a variety of tablets before it was decided I really did need insulin! My last HbA1c was 62 having crept up from a, much healthier, 50 the year before.

 

[rebrascora]

So pleased you have got a referral to a specialist clinic.
Personally I am not sure going back solely onto Tresiba is a good thing, unless you eat a very low carb, higher fat diet, but at least you have experience of managing your condition with it, so you will cope until you get your appointment and then hopefully get a bolus insulin added into the regime and a course on carb counting to follow and more importantly support from HCPs who know what they are talking about..... and with testing, hopefully a correct diagnosis.