Change of diagnosis

[Joanneclairebarnes]

Hi
I'm Jo and was diagnosed type 1 13 years ago, aged 19.
Honestly I'm pretty fed up and need some advice support so figured this would be a good place to look for it!
I have always had v low insulin requirements and in the past asked my doctor if I could be type 2, if I could have the antibodies test and was refused.
I had my first baby nearly a year ago. During and after pregnancy my insulin requirements remained very low. I had never seem a consultant before pregnancy and during pregnancy the consultant I did see questioned whether I could have MODY. I have had screening test which have been negative. I have also had a negative type one antibodies test and my c peptide test showed a reasonable insulin production.. Unheard of after being diabetic for 13 years.

I have been put on metformin 4 x 50mg a day (I've been told more than this won't make much differencr) I've been advised to stop insulin as I have a lot of hypos even with between 2 - 5 units. If I don't take insulin my blood sugars spike to around 20 after meals and take quite a few hours to settle.

I feel like whatever I do doesn't work I've basically been told by my consultant that I need to go with it and will have a follow up on 6 months. My husband says I need to call back but I just feel like I will be given the same advice.. And because they don't know what's going on they don't know how to best treat me. any one hve any ideas of someone else I could talk to? Or any one had a similar experience?

Thanks

 

[Inka]

Hi @Joanneclairebarnes I had tests because MODY was suspected, but my tests found antibodies so I’ve been confirmed as Type 1.

My consultant told me that some Type 1s develop it quite slowly and can still produce some insulin for months or years. I’ve also heard that LADA’s (late-onset) sometimes don’t have antibodies. But - you say that without insulin you spike to 20? Are you saying that your insulin has been removed and you’re now getting high sugars?? If so, I wouldn’t be happy with that. I don’t understand why you can’t just take very small amounts of insulin. Have you been offered a pump?

As a comparison, when I was first diagnosed, I only needed tiny amounts of basal (1 or 2 units).

Can you run through a typical day’s food and blood sugars?

 

[Inka]

To add - I’d definitely be calling them back! You don’t want sugars that high, and I can’t see why a suitable regime can’t be found for you. 6 months of 20s isn’t acceptable.

 

[Joanneclairebarnes]

Thank you! I think type 1 is most likely still.
I was probably a bit unclear!

Breakfast usually small amount of porridge or toast, no insulin just metformin. Blood sugars typically rise to 9-10 and come down quite well.

Lunch maybe bagel with scrambled egg or a sandwich with fruit.. I take 1 or 2 units of fast acting plus 2 metformin.
With this my blood sugar may go to 11 or 12 but again comes down reasonably quickly.

I often have a hypo before evening meal. I tend to eat a larger amount and take up to 5 units (estimate carbs and insulin needed) plus one metformin and this again is fine. Then bloods sugars are typically around 7 to 9 at bed time and 5 throughout the night. I also take 3 units of lantus in the evening. More than this I get hypos throughout the day.

I have been told to cut out insulin with lunch. However I don't want to do this as this is when I'll go up to 15 - 20. The reason they advised it is due to hypos before dinner but I think I'd rather take insulin and have a small snack after lunch before dinner.

To be honest I was pretty happy with this but spoke to a new consultant who acted like the hypos before dinner absolutely needed to stop and I should stop insulin. They only happen a few times a week and only go down to around 3.6 at the lowest. I'm quite aware too.

I think I might just ignore and carry on with the insulin at lunch. I think I'm just worrying as I'm on such a mix of meds, but if it works surely that's OK?!

 

[Drummer]

If you were a type two, then you would not be eating those high carb foods but keeping your blood glucose low by avoiding fruit and grains.
At the moment you seem to be fighting the insulin with carbs.

 

[NotWorriedAtAll]

Have to agree with Drummer - my eyebrows shot up a bit when I saw bagels and toast and oatmeal and fruit.
If I ate toast and fruit or sandwiches made from wheat flours my blood sugars would be through the roof.
Because I eat very low carb high fat food and make my own yeast breads from mainly fibres and a bit of vital wheat gluten my carb intake is around 20g per day. Yours would go well over that for one meal!!

 

[Deleted member 27171]

Hi @Joanneclairebarnes welcome to the forum.

What were the circumstances that led to your initial diagnosis? I’m just wondering what made the doctor (I’m assuming GP as you mention not seeing a consultant for some years?) diagnose Type 1 - as it could well have been assumption based on your age.
Do you have any family history of Type 2?

 

[Joanneclairebarnes]

If you were a type two, then you would not be eating those high carb foods but keeping your blood glucose low by avoiding fruit and grains.
At the moment you seem to be fighting the insulin with carbs.

I am not type 2. I was diagnosed at 19 with no risk factors and was advised to eat carbs with insulin.

 

[Joanneclairebarnes]

Have to agree with Drummer - my eyebrows shot up a bit when I saw bagels and toast and oatmeal and fruit.
If I ate toast and fruit or sandwiches made from wheat flours my blood sugars would be through the roof.
Because I eat very low carb high fat food and make my own yeast breads from mainly fibres and a bit of vital wheat gluten my carb intake is around 20g per day. Yours would go well over that for one meal!!

Thank you for your reply but I do find this quite upsetting. I have done courses on dosage adjustment and have been told to eat carbs. I am not type 2. I simple said I wondered if it could be the case due to low insulin requirements. I haven't been advised to follow a type 2 or low carb diet but I do try and eat similar foods each day.

 

[silentsquirrel]

Hi
I'm Jo and was diagnosed type 1 13 years ago, aged 19.
Honestly I'm pretty fed up and need some advice support so figured this would be a good place to look for it!
I have always had v low insulin requirements and in the past asked my doctor if I could be type 2, if I could have the antibodies test and was refused.
I had my first baby nearly a year ago. During and after pregnancy my insulin requirements remained very low. I had never seem a consultant before pregnancy and during pregnancy the consultant I did see questioned whether I could have MODY. I have had screening test which have been negative. I have also had a negative type one antibodies test and my c peptide test showed a reasonable insulin production.. Unheard of after being diabetic for 13 years.

I have been put on metformin 4 x 50mg a day (I've been told more than this won't make much differencr) I've been advised to stop insulin as I have a lot of hypos even with between 2 - 5 units. If I don't take insulin my blood sugars spike to around 20 after meals and take quite a few hours to settle.

I feel like whatever I do doesn't work I've basically been told by my consultant that I need to go with it and will have a follow up on 6 months. My husband says I need to call back but I just feel like I will be given the same advice.. And because they don't know what's going on they don't know how to best treat me. any one hve any ideas of someone else I could talk to? Or any one had a similar experience?

Thanks

I am tagging @Northerner , who possibly is similar - diagnosed Type 1 some years ago but still producing some insulin.

 

[Joanneclairebarnes]

Hi @Joanneclairebarnes welcome to the forum.

What were the circumstances that led to your initial diagnosis? I’m just wondering what made the doctor (I’m assuming GP as you mention not seeing a consultant for some years?) diagnose Type 1 - as it could well have been assumption based on your age.
Do you have any family history of Type 2?

Thanks for the reply. I went to the doctors with a suspected kidney infection after having a few of these. I also experienced typical type one symptoms of thirst and needing the toilet frequently. No family history or risk factors for type 2 so I'm pretty sure it's not. I have always had a very good hba1c around 42 so was never under consultant care due to being 'well controlled'
I don't think I was well controlled I just never needed much insulin.

 

[Deleted member 27171]

I think if you’re essentially happy with how things are going and just needing a snack late afternoon to prevent a hypo it would make sense to push to keep things as they are, a few hypos a week when you have good symptom awareness doesn’t sound too awful. I guess from the doctors point of view if they can see the hypos follow quite a specific pattern they would want to try and resolve that. Do you vary your carb ratios at different mealtimes? If not it could be that your lunchtime one needs tweaking a little, but can see why you wouldn’t find it acceptable to remove insulin at lunchtime altogether if you get such steep rises without it.
I hope you can find a resolution that is agreeable with both you and your consultant.

 

[Joanneclairebarnes]

I think if you’re essentially happy with how things are going and just needing a snack late afternoon to prevent a hypo it would make sense to push to keep things as they are, a few hypos a week when you have good symptom awareness doesn’t sound too awful. I guess from the doctors point of view if they can see the hypos follow quite a specific pattern they would want to try and resolve that. Do you vary your carb ratios at different mealtimes? If not it could be that your lunchtime one needs tweaking a little, but can see why you wouldn’t find it acceptable to remove insulin at lunchtime altogether if you get such steep rises without it.
I hope you can find a resolution that is agreeable with both you and your consultant.

Thank you Lucy. ❤️ I think the problem is I did a dosage adjustment course for normal eating so I do tend to vary. But I think where everything is unsettled I maybe need to try lower carbs at lunch and stick to the same amounts x

 

[Joanneclairebarnes]

I am tagging @Northerner , who possibly is similar - diagnosed Type 1 some years ago but still producing some insulin.

Thank you!

 

[rebrascora]

Can I ask who is over seeing your diabetes management? If it is a GP then you need to ask for a referral to a diabetes consultant. Metformin is a Type 2 medication and if you are not Type 2 or suffering from insulin resistance which clearly you aren't since you needed such small amounts of it, then you should not be on it in my opinion.
Just so you know you are not totally unique in requiring very little insulin as a Type 1 diabetic, there was a lady on my DAFNE course who had been Type 1 for 50 years and only needed 2 units of Lantus per day and a similarly small amount of NovoRapid once a day and she hypoed almost every night but her BG levels went into the high teens through the day, even though she only ate on an evening. She was eventually sorted out with a pump as the tiny amounts of insulin she needed were far easier to administer that way and at the times when she needed it. To get a pump you would need to be under a consultant.

Your current situation is not managing your levels effectively and putting you at risk and you should challenge it.

Out of curiosity, did you have a half unit pen for your Lantus and NovoRapid as that may have been beneficial with you needing such small amounts. A Freestyle Libre would probably also help you manage your levels and insulin better and perhaps a different basal insulin rather than Lantus. There are lots of options and a good consultant or DSN should be exploring those options in my opinion. If you are under a consultant then perhaps ask for a referral to a different consultant or centre where you might get better support.

 

[Joanneclairebarnes]

Thanks everyone for your input and advice. I think I am just feeling a bit fed up not knowing exactly what my diagnosis is and needed a moan!

 

[Inka]

Do what works for you. I agree with Lucy that a snack seems sensible. I’d rather have in range sugars after a meal and have to top up with a few grams of carbs than spike too high. It’s no big deal to snack and if it works for your blood sugar then that’s fine.

And on the carbs front - I eat cereal and porridge, bread, pasta, rice, fruit, etc etc and my HbA1C and BMai is fine. Do what you’re doing 🙂

If you don’t have a half unit pen, that would be useful, and again, you might find a pump really helps you, and reduces any lows.

 

[Joanneclairebarnes]

Can I ask who is over seeing your diabetes management? If it is a GP then you need to ask for a referral to a diabetes consultant. Metformin is a Type 2 medication and if you are not Type 2 or suffering from insulin resistance which clearly you aren't since you needed such small amounts of it, then you should not be on it in my opinion.
Just so you know you are not totally unique in requiring very little insulin as a Type 1 diabetic, there was a lady on my DAFNE course who had been Type 1 for 50 years and only needed 2 units of Lantus per day and a similarly small amount of NovoRapid once a day and she hypoed almost every night but her BG levels went into the high teens through the day, even though she only ate on an evening. She was eventually sorted out with a pump as the tiny amounts of insulin she needed were far easier to administer that way and at the times when she needed it. To get a pump you would need to be under a consultant.

Your current situation is not managing your levels effectively and putting you at risk and you should challenge it.

Out of curiosity, did you have a half unit pen for your Lantus and NovoRapid as that may have been beneficial with you needing such small amounts. A Freestyle Libre would probably also help you manage your levels and insulin better and perhaps a different basal insulin rather than Lantus. There are lots of options and a good consultant or DSN should be exploring those options in my opinion. If you are under a consultant then perhaps ask for a referral to a different consultant or centre where you might get better support.

Thank you Barbara. I am under consultant care but I feel I am just given the same advice each time. Your friend sounds very similar to me which is reassuring to hear. The consultant put me on metformin. I think I need to write down a list of points and questions and challenge them a bit.

Thanks

 

[Joanneclairebarnes]

Thank you Barbara. I am under consultant care but I feel I am just given the same advice each time. Your friend sounds very similar to me which is reassuring to hear. The consultant put me on metformin. I think I need to write down a list of points and questions and challenge them a bit.

Thanks

Also just to add I don't have a half unit pen so will ask for this. I do also have a freestyle libre

 

[rebrascora]

Good to hear you have Libre but do push for more help and explanations for what their thinking is re medication. I believe that Metformin can also inhibit the liver from dumping glucose into the blood stream so that may be why they have prescribed it but that may be potentially dangerous if you are also having hypos, which may be why they don't want you to take insulin at lunchtime, although as I understand it, Metformin takes time to build up in the system and is not specifically active after each dose, but builds up to a level of effectiveness throughout the day.

On my DAFNE course they actually said that they consider a hypo 3.5 or below rather than the typical 4 because non diabetic people can naturally drop below 4 on occasion, so whilst they shouldn't be too concerned there is much more focus these days on preventing "hypos". I would have thought they should maybe look at changing your lunchtime insulin:carb ratio to prevent them rather than suggesting you don't use insulin at lunchtime.
Have you been taught to alter your insulin doses to match your meals? Have you done a DAFNE or equivalent course?

Another option would be to have a low carb meal at lunchtime and not use insulin. I am Type 1 and I follow a very low carb higher fat way of eating and there is nothing wrong with that if you can get your head around it. In fact I often don't have any lunch at all and just have breakfast and dinner. There is no harm in cutting carbs and it can be an enjoyable way to eat once you know how. I certainly use it as a means of helping to control my diabetes and use less insulin, so don't be offended by the suggestions made above. I am sure they were made in good faith. Yes, as Type 1s we are encouraged to eat "normally" but there is no harm in experimenting with low carb. It is not harmful, provided you reduce your insulin dose accordingly.