Hi Everyone,

[Ctaylor1]

I am new to the forum, just joined this week and wished I had joined sooner. I have taken a lot of comfort in other peoples experiences in knowing that I am not alone.
I was diagnosed as diabetic by my GP in September 2019 my case was passed on to the hospital as they were unable to diagnose which type as I was not a direct fit for either 1 or 2. This all came as a massive shock as I hadn’t been particularly unwell apart from urine infection which revealed a high level of ketones. I was seen by the hospital pretty quickly, lots of questions asked and bloods were taken to try and determine what type of diabetes I had. I was advised that the results still may not be conclusive of type but at that time they thought it is was more likely type 1. I was devastated but tried my best to keep myself together whilst trying to get my BS under control. The results didn’t come back till 14 weeks later by which time I was managing my BS much better between diet and meds. The results came back with negative gads which indicated type 2 but was told that this still didn’t mean that I wasn’t type 1. I was back at the diabetic clinic in February 2020 for my HbA1c I had managed to get it down from 97 from when I was diagnosed to 40. It was still a bit of mystery about type but further blood tests were taken and sent off again. On a positive I was able to start decreasing the dose of my meds. Then COVID hit and I didn’t hear back about these tests till June 2020. They were testing for anti bodies that are commonly associated with Type 1 and I had none present and as I had responded well to meds they now think it is more likely type 2 I have. I have not heard anything further due to appointments not going ahead due to COVID. It has been long hard emotionally rocky road getting here but I do feel like I am getting there. I am still working on reducing my meds further. I have tried introduce regular exercise in a bid to do this but I am finding that it spikes my BS, which is really disheartening. I have tried various types of exercises cross training, hiit and even long walks. Does this happen to anyone else? Any tips would be much appreciated.
Anyway that’s my story so far......thanks for reading. X

 

[bulkbiker]

I am new to the forum, just joined this week and wished I had joined sooner. I have taken a lot of comfort in other peoples experiences in knowing that I am not alone.
I was diagnosed as diabetic by my GP in September 2019 my case was passed on to the hospital as they were unable to diagnose which type as I was not a direct fit for either 1 or 2. This all came as a massive shock as I hadn’t been particularly unwell apart from urine infection which revealed a high level of ketones. I was seen by the hospital pretty quickly, lots of questions asked and bloods were taken to try and determine what type of diabetes I had. I was advised that the results still may not be conclusive of type but at that time they thought it is was more likely type 1. I was devastated but tried my best to keep myself together whilst trying to get my BS under control. The results didn’t come back till 14 weeks later by which time I was managing my BS much better between diet and meds. The results came back with negative gads which indicated type 2 but was told that this still didn’t mean that I wasn’t type 1. I was back at the diabetic clinic in February 2020 for my HbA1c I had managed to get it down from 97 from when I was diagnosed to 40. It was still a bit of mystery about type but further blood tests were taken and sent off again. On a positive I was able to start decreasing the dose of my meds. Then COVID hit and I didn’t hear back about these tests till June 2020. They were testing for anti bodies that are commonly associated with Type 1 and I had none present and as I had responded well to meds they now think it is more likely type 2 I have. I have not heard anything further due to appointments not going ahead due to COVID. It has been long hard emotionally rocky road getting here but I do feel like I am getting there. I am still working on reducing my meds further. I have tried introduce regular exercise in a bid to do this but I am finding that it spikes my BS, which is really disheartening. I have tried various types of exercises cross training, hiit and even long walks. Does this happen to anyone else? Any tips would be much appreciated.
Anyway that’s my story so far......thanks for reading. X

Walks are usually beneficial at lowering blood sugar are yours especially energetic? That might be why they are causing spikes.
I'm guessing none of your HCPs have thought of a c-peptide test t show how much insulin you are producing which would give a far better idea of the version you have. If you have access to your records online maybe see if you have had one.
What dietary changes did you make to get your HbA1c down so much?

Oops edit to add hi and welcome.. sorry forgetting my manners..

 

[Ctaylor1]

Walks are usually beneficial at lowering blood sugar are yours especially energetic? That might be why they are causing spikes.
I'm guessing none of your HCPs have thought of a c-peptide test t show how much insulin you are producing which would give a far better idea of the version you have. If you have access to your records online maybe see if you have had one.
What dietary changes did you make to get your HbA1c down so much?

Oops edit to add hi and welcome.. sorry forgetting my manners..

Thanks for your reply. My walks don’t always produce a spike so it maybe the case that it does spike the more exerting they are. I will take more note but I was going along the lines that less high intensity exercise might be better.
I will definitely check to see if I have had a c-peptide test and if not I will see if I can get one as soon as possible with everything that’s been going on.
I didn’t actually have to make huge changes to my diet. I didn’t have an overly sweet tooth but I did eat a lot pasta, rice, potatoes and white bread. I cut these out completely or to a bare minimum till I got my BS to normal. I have reintroduced some of these foods but always the whole grain alternative and portioned.
Thanks again for your help.

 

[Mike d]

Whole grain makes next to no difference .,.. full of carbs. Dump them all IMO

 

[Ctaylor1]

Welcome ... reading that from that start, my immediate thought was you're a T2. That's quite a plummet so brilliant work.

What meds are you on? Typical diet? Weight loss goal (if you have one)?

Thanks for your reply and welcome.

On diagnosis my GP prescribed Merformin and once I was seen by the hospital i was prescribed glimeperide to take along with the Metformin. I am currently still on both but have managed to decrease the dosage of Glimeperide from 4mg to 0.5mg per day. I would really love to come off of it all together. I did manage to come off of it in the first lockdown but when I returned to work my BS started to spike regularly. I don’t have a weight loss goal I was 70 kg when I was diagnosed and I am now 51 kg. I would say that my diet is pretty well balanced. On a typical day I have porridge with blueberries for breakfast. Lunch and dinner would normally consist of salad/veg and a protein of eggs, fish or chicken. I do sometimes have bread or rice but always whole grain option and portion controlled, I also have potatoes on the odd occasion. If I need a snack I would go for some nuts, lentil chips, protein bar.
Thanks again for your reply.

 

[Ctaylor1]

Whole grain makes next to no difference .,.. full of carbs. Dump them all IMO

I have heard this before and it might be something I should look into further. I did see a dietitian and she did say bread, rice would be ok if it was portioned and whole grain would be better.
Thanks for your input.

 

[Ctaylor1]

Your dietician (with respect) needs some swotting up on wholegrains but do keep those portions small. Weight is terrific, the rest of your diet fabulous

I must admit I did come away from the dietician appointment not feeling like I had learned anything really useful. I have tried doing my own research but there is a lot of conflicting advice out there especially on Dr Google. That’s why I am so glad to come this forum and try and learn from other peoples experiences of actually living with this disease. Thanks again for your advice for encouragement.

 

[MrsA2]

@Ctaylor1
Have you tested your bg for the porridge, potatoes and lentil chips and protein bars? One or more of them may not be too good for you. The latter 2 are massed produced and the first 2 may surprise you.

 

[Ctaylor1]

@Ctaylor1
Have you tested your bg for the porridge, potatoes and lentil chips and protein bars? One or more of them may not be too good for you. The latter 2 are massed produced and the first 2 may surprise you.

Thanks for your reply MrsA2.
I still regularly test throughout day and my levels are currently pretty good. Apart from the porridge none of the other items I would eat on a daily basis and when I do it would be a small portion.
Everyday seems to have been a school day since my diagnosis. Reading some of the threads on this forum has been a massive help learning through other peoples experiences. It’s definitely opened my eyes that there is more things I can be changing in my diet/lifestyle. Fingers crossed I can apply some of what I have learned and make some changes that may allow to decrease meds further.

 

[LaoDan]

I am new to the forum, just joined this week and wished I had joined sooner. I have taken a lot of comfort in other peoples experiences in knowing that I am not alone.
I was diagnosed as diabetic by my GP in September 2019 my case was passed on to the hospital as they were unable to diagnose which type as I was not a direct fit for either 1 or 2. This all came as a massive shock as I hadn’t been particularly unwell apart from urine infection which revealed a high level of ketones. I was seen by the hospital pretty quickly, lots of questions asked and bloods were taken to try and determine what type of diabetes I had. I was advised that the results still may not be conclusive of type but at that time they thought it is was more likely type 1. I was devastated but tried my best to keep myself together whilst trying to get my BS under control. The results didn’t come back till 14 weeks later by which time I was managing my BS much better between diet and meds. The results came back with negative gads which indicated type 2 but was told that this still didn’t mean that I wasn’t type 1. I was back at the diabetic clinic in February 2020 for my HbA1c I had managed to get it down from 97 from when I was diagnosed to 40. It was still a bit of mystery about type but further blood tests were taken and sent off again. On a positive I was able to start decreasing the dose of my meds. Then COVID hit and I didn’t hear back about these tests till June 2020. They were testing for anti bodies that are commonly associated with Type 1 and I had none present and as I had responded well to meds they now think it is more likely type 2 I have. I have not heard anything further due to appointments not going ahead due to COVID. It has been long hard emotionally rocky road getting here but I do feel like I am getting there. I am still working on reducing my meds further. I have tried introduce regular exercise in a bid to do this but I am finding that it spikes my BS, which is really disheartening. I have tried various types of exercises cross training, hiit and even long walks. Does this happen to anyone else? Any tips would be much appreciated.
Anyway that’s my story so far......thanks for reading. X

Hi and welcome, regarding the exercise spikes, I do intense workouts daily, My spikes gradually came down as I became healthier, more insulin sensitive. It a worthwhile process

 

[Ctaylor1]

Hi and welcome, regarding the exercise spikes, I do intense workouts daily, My spikes gradually came down as I became healthier, more insulin sensitive. It a worthwhile process

Hi, thanks for your welcome and encouraging advice. This is really great to hear as I do get pretty disheartened when you think you have done good and reflects the opposite in your BS. I do prefer to do intensive workouts and when you enjoy something it’s much easier maintained.

 

[KK123]

Hi, thanks for your welcome and encouraging advice. This is really great to hear as I do get pretty disheartened when you think you have done good and reflects the opposite in your BS. I do prefer to do intensive workouts and when you enjoy something it’s much easier maintained.

Hi there, all I would say is make you sure you keep on checking your levels. I know your antibodies were negative (some type 1s DO have negative antibodies, especially if they have been type 1 for a while), so as previously stated, ask for a C Peptide test to establish how much of your own insulin you are still making. You may well be a type 2 of course but any hb1ac you have had done since diagnosis may be down to the fact that you went low carb. I did this at diagnosis which led to a few more months of them wondering if I was type 2, when they did all of the extra tests, it was type 1. You MAY be in a honeymoon period too. I was diagnosed first as pre diabetic (did not fit the so called 'profile' so they just said ah well and that was it for 3 years). 3 years later, in hospital with high ketones and an off the scale hb1ac. The first dose of insulin took me right down to hypo levels. I came out of hospital on insulin, to cut a long story short, I started on 1 or 2 units (still on 1 or two units) I think BECAUSE of the honeymoon period.

Sorry to go on, but my point is that you could still be type 1, especially if you are losing a lot of weight without trying, if your daily levels start to rise despite low carb etc, or you start feeling very unwell. Please keep an eye on it all. x

 

[Ctaylor1]

Hi there, all I would say is make you sure you keep on checking your levels. I know your antibodies were negative (some type 1s DO have negative antibodies, especially if they have been type 1 for a while), so as previously stated, ask for a C Peptide test to establish how much of your own insulin you are still making. You may well be a type 2 of course but any hb1ac you have had done since diagnosis may be down to the fact that you went low carb. I did this at diagnosis which led to a few more months of them wondering if I was type 2, when they did all of the extra tests, it was type 1. You MAY be in a honeymoon period too. I was diagnosed first as pre diabetic (did not fit the so called 'profile' so they just said ah well and that was it for 3 years). 3 years later, in hospital with high ketones and an off the scale hb1ac. The first dose of insulin took me right down to hypo levels. I came out of hospital on insulin, to cut a long story short, I started on 1 or 2 units (still on 1 or two units) I think BECAUSE of the honeymoon period.

Sorry to go on, but my point is that you could still be type 1, especially if you are losing a lot of weight without trying, if your daily levels start to rise despite low carb etc, or you start feeling very unwell. Please keep an eye on it all. x

Hi, thanks for response. It does very much play in my thoughts that it could still be type 1, despite the tests that have been done to date. I have checked back my records and do not appear to have had C Peptide test (not sure why,but I will ask this question too) so this is something I will chase up. I do still regularly test and I have had to become a lot better at taking heed to what my body is telling me.