I’m scared and need support

[Tryingmybest]

Hi everyone, I’m new here, 43 year old woman, with zero risk factors, given a prediabetes diagnosis 2 years ago and have been controlling with diet and exercise,

I’ve cut out all sugar, and 80-90% carbs, I rarely eat bread, pasta, rice, noodles, fruit, I live on keto, meat eggs and veg, do loads of exercise, take all the supplements, (berberine, magnesium, bitter melon, ginseng, etc) and have basically been forgotten by the NHS as I managed to put my HBA1c into normal levels (just) with diet and exercise (I do 300-500 star jumps A DAY and swim, run, yoga)

… and STILL my bloods are stupidly high, I haven’t woken up with normal levels in over 2 years!! This morning they were 9 and I didn’t even eat any dinner last night!! I had the audacity to eat a couple of mouthfuls of teriyaki noodles a couple nights ago- bloods went to 17!! But apparently there’s nothing wrong with me??

I think I do actually have diabetes and the doctors haven’t done enough to diagnose and treat. I can’t even get an appointment with my gp, it’s an hour long wait every time to try to call them and I just don’t have time- I work and study and have no free time!

I’m doing EVERYTHING and it’s still getting worse. Not really looking for much other than support and as I don’t know who to turn to…

I’m scared and sad and feel that I have run out of options and don’t have any support other than my long suffering boyfriend.

Thank you for listening

 

[Mr_Pot]

Hi everyone, I’m new here, 43 year old woman, with zero risk factors, given a prediabetes diagnosis 2 years ago and have been controlling with diet and exercise,

I’ve cut out all sugar, and 80-90% carbs, I rarely eat bread, pasta, rice, noodles, fruit, I live on keto, meat eggs and veg, do loads of exercise, take all the supplements, (berberine, magnesium, bitter melon, ginseng, etc) and have basically been forgotten by the NHS as I managed to put my HBA1c into normal levels (just) with diet and exercise (I do 300-500 star jumps A DAY and swim, run, yoga)

… and STILL my bloods are stupidly high, I haven’t woken up with normal levels in over 2 years!! This morning they were 9 and I didn’t even eat any dinner last night!! I had the audacity to eat a couple of mouthfuls of teriyaki noodles a couple nights ago- bloods went to 17!! But apparently there’s nothing wrong with me??

I think I do actually have diabetes and the doctors haven’t done enough to diagnose and treat. I can’t even get an appointment with my gp, it’s an hour long wait every time to try to call them and I just don’t have time- I work and study and have no free time!

I’m doing EVERYTHING and it’s still getting worse. Not really looking for much other than support and as I don’t know who to turn to…

I’m scared and sad and feel that I have run out of options and don’t have any support other than my long suffering boyfriend.

Thank you for listening

When did you last have a HbA1c blood test? Contact your doctor and ask for a blood test, those readings are very high. Not everyone has risk factors, some of it is due to genetics.

 

[jonathan183]

It might be worth trying an elimination diet to work out if certain foods are resulting in the high blood glucose levels - so you can avoid them.

Gluten and grains, dairy, eggs for example maybe contributing to the high blood glucose ...

It's also worth pushing for the appointment as high blood glucose will be causing damage over time ... all the best

 

[Tryingmybest]

The last time I had an HBA1c was about 8 months ago, I was told (reluctantly) that I could have one a year due to my ‘non diabetic’ status. I’ve been trying to get through to the surgery but where I live there is a massive demand and it’s only gone up because of covid. Last 3 times I’ve called them I have been number 25-30 in a queue to get through to a receptionist. I feel abandoned by the nhs

 

[KK123]

Hi @Tryingmybest, I agree with Mr Pot, get back to the Doctors. I was diagnosed as 'pre diabetic' and 3 years later it turned out to be type 1. That meant I struggled on for 3 years thinking I was pre diabetic/heading for type 2. I finally ended up being whisked into hospital on the verge of DKA, had all of the proper tests done (C Peptide/antibodies etc) and they confirmed type 1. I suspect that the pre diabetes diagnosis was the start of the slowish onset into type 1. I say this not to alarm you but with your background and still high numbers, something is up. Forget experimenting with cutting out foods from what you are currently eating, you are keto, get a proper diagnosis, and sorry to sound mean but MAKE time. x

 

[KK123]

It might be worth trying an elimination diet to work out if certain foods are resulting in the high blood glucose levels - so you can avoid them.

Gluten and grains, dairy, eggs for example maybe contributing to the high blood glucose ...

It's also worth pushing for the appointment as high blood glucose will be causing damage over time ... all the best

The poster eats meat, eggs & veg?

 

[Tryingmybest]

Thank you, I don’t really eat any gluten or dairy, eggs are the only thing I can eat for breakfast so can’t cut them out… am definitely going back to doctors… just need some encouragement and support as I’m very well educated about diet/ blood sugar etc… just baffled as to why this is happening to me…

 

[bulkbiker]

eggs for example maybe contributing to the high blood glucose

How would eggs contribute to elevated blood glucose?
What mechanism would that be?

 

[Member496333]

Keep in mind that if you normally eat keto and then introduce carbohydrate then a sharp rise in glucose is to be expected. It’s called glucose sparing. My feeling in your case though is that you may have an insulin deficiency. You really need to pester for a GP appointment and probably get a referral to an endocrinologist. In the immediate term it may be worth your while purchasing a ketone meter to see if your ketones and glucose are simultaneously high. If they are then you most definitely need urgent advice from a professional.

 

[ziggy_w]

Hi @Tryingmybest,

I agree with @KK123 -- there is a decent chance that you are in fact Type 1 rather than Type 2 (no risk factors, virtually no carbs, lots of sports, and still rising blood sugars). In my mind, there is nothing else in terms of diet and exercise you could do to improve your situation -- and therefore entirely understand your frustrations.

I empathize that it is trying to be number 25 or 30 in a queue when calling your gp's office, but be persistent. ... and remember to press for a referral so that you can be tested for T1.

 

[jonathan183]

How would eggs contribute to elevated blood glucose?
What mechanism would that be?

https://www.diabetes.co.uk/forum/th...e-of-autoimmune-diabetes.154040/#post-1837185

also see here

... I'm not suggesting this instead of getting in touch with the GP but it may help.

 

[Ronancastled]

You seem to be doing everything right, it's the medical profession that is letting you down.
Get onto your GP as soon as & ask for the tests listed above to rule out slow onset T1.
Good thing you are proactive.

 

[JoKalsbeek]

Hi everyone, I’m new here, 43 year old woman, with zero risk factors, given a prediabetes diagnosis 2 years ago and have been controlling with diet and exercise,

I’ve cut out all sugar, and 80-90% carbs, I rarely eat bread, pasta, rice, noodles, fruit, I live on keto, meat eggs and veg, do loads of exercise, take all the supplements, (berberine, magnesium, bitter melon, ginseng, etc) and have basically been forgotten by the NHS as I managed to put my HBA1c into normal levels (just) with diet and exercise (I do 300-500 star jumps A DAY and swim, run, yoga)

… and STILL my bloods are stupidly high, I haven’t woken up with normal levels in over 2 years!! This morning they were 9 and I didn’t even eat any dinner last night!! I had the audacity to eat a couple of mouthfuls of teriyaki noodles a couple nights ago- bloods went to 17!! But apparently there’s nothing wrong with me??

I think I do actually have diabetes and the doctors haven’t done enough to diagnose and treat. I can’t even get an appointment with my gp, it’s an hour long wait every time to try to call them and I just don’t have time- I work and study and have no free time!

I’m doing EVERYTHING and it’s still getting worse. Not really looking for much other than support and as I don’t know who to turn to…

I’m scared and sad and feel that I have run out of options and don’t have any support other than my long suffering boyfriend.

Thank you for listening

It sounds like you're doing everything right, and you're still seeing high numbers. If your strips are in date and your machine's not old... (It may be worth to check that.). It does sound like it's more an insulin deficiency than a T2 thing. If your doc doesn't co-operate, you might want to get tests done privately and then slap them over the head with them. I think it may be worthwhile to get a C-peptide and GAD test done to check for a T1 variant, besides a HbA1c. Don't let this go. You have a right to proper treatment.

 

[In Response]

also see here

As soon as I started reading the first paragraph I saw red.
I am not disagreeing that there is such a thing as "Food Sensitivity" but anyone who defines themselves as "Type 1 Diabetic who is not taking additional insulin" is suspicious. Type 1 is an autoimmune disease which kills off the insulin producing cells - we have to take insulin or die. It is not about "additional insulin" the insulin we inject is all the insulin we have.
At least they explain that they "not a medical doctor giving medical advice"

 

[jonathan183]

As soon as I started reading the first paragraph I saw red.
I am not disagreeing that there is such a thing as "Food Sensitivity" but anyone who defines themselves as "Type 1 Diabetic who is not taking additional insulin" is suspicious.

not quite the whole story see here ...

 

[Juicyj]

not quite the whole story see here ...

One woman's adventures in avoiding insulin are not indicative of what could happen to the 400,000 folk who live with t1 in the UK - these stories are rare and reflect a single persons unique relationship with their t1, I wouldn't recommend anyone who has anxiety about their health status to try and avoid insulin when it's vital that insulin therapy is necessary.

 

[Juicyj]

@Tryingmybest Sorry to hear about your worries - as others have said it's vital you get seen by your GP and referred asap, if this is indeed slow onset t1 then getting the right treatment is vital, as well as getting on their radar.

 

[KK123]

As soon as I started reading the first paragraph I saw red.
I am not disagreeing that there is such a thing as "Food Sensitivity" but anyone who defines themselves as "Type 1 Diabetic who is not taking additional insulin" is suspicious. Type 1 is an autoimmune disease which kills off the insulin producing cells - we have to take insulin or die. It is not about "additional insulin" the insulin we inject is all the insulin we have.
At least they explain that they "not a medical doctor giving medical advice"

I agree with you. Personally, some blog from someone who describes themselves as an 'insulin free type 1 diabetic' is hardly helpful to the poster here.

 

[Hertfordshiremum]

Hi everyone, I’m new here, 43 year old woman, with zero risk factors, given a prediabetes diagnosis 2 years ago and have been controlling with diet and exercise,

I’ve cut out all sugar, and 80-90% carbs, I rarely eat bread, pasta, rice, noodles, fruit, I live on keto, meat eggs and veg, do loads of exercise, take all the supplements, (berberine, magnesium, bitter melon, ginseng, etc) and have basically been forgotten by the NHS as I managed to put my HBA1c into normal levels (just) with diet and exercise (I do 300-500 star jumps A DAY and swim, run, yoga)

… and STILL my bloods are stupidly high, I haven’t woken up with normal levels in over 2 years!! This morning they were 9 and I didn’t even eat any dinner last night!! I had the audacity to eat a couple of mouthfuls of teriyaki noodles a couple nights ago- bloods went to 17!! But apparently there’s nothing wrong with me??

I think I do actually have diabetes and the doctors haven’t done enough to diagnose and treat. I can’t even get an appointment with my gp, it’s an hour long wait every time to try to call them and I just don’t have time- I work and study and have no free time!

I’m doing EVERYTHING and it’s still getting worse. Not really looking for much other than support and as I don’t know who to turn to…

I’m scared and sad and feel that I have run out of options and don’t have any support other than my long suffering boyfriend.

Thank you for listening

Hi I agree you need GAD antibody testing, email the GP. It’s in writing they can’t ignore it.

I had a similar situation with my previous GP, ended up in hospital with DKA, changed to a different GP where you can email in and have no problem getting an appointment whenever ill and needing urgent help.

 

[Grant_Vicat]

not quite the whole story see here ...

I cannot agree with this blog. Because I was Type 1 for 54 years, starting from the age of 11 months, I became involved in the research of very early diagnosed Type 1 diabetics, since the belief was that with stem cell surgery etc they might regenerate existing insulin producting cells. They didn't find any in my case. I have eaten eggs all my life and found that they had zero effect on my blood glucose. Without insulin I would not have made it to school, let alone written this now! This was carried out by the leading specialist in this field:
Dr Richard Oram
Diabetes UK Harry Keen Fellow
Associate Professor & Honorary Renal Consultant
College of Medicine and Health
University of Exeter
Royal Devon and Exeter Hospital