Please suggest way forward!

Hi @Annina

What are your blood sugars doing before and after meals? Could you share some typical meals in case there are tweaks we can spot? What was your most recent HbA1c?

Annina said:

Hi Goonergal sorry did not figure out how to respond. Hi I have stopped taking readings before and after, will start again. Take a readinf in the morning it is 13-14-15.
Then again before I eat in the evening the same readings. Only down if I am fasting.

Last 81 MAY2020. I do not eat breakfast. Only 2 coffees with cream. Mid day seed bread I make cheese 2 teas with soya milk.
Evening fish or meat salad or vegetables, desert cheese or home made pannacotta. Weekends 2 glasses of wine.

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Hi

That’s quite a big jump from 48 to 81. I don’t see that what you’re eating would account for that, so I’d suggest a trip to the GP for a c-peptide and GAD antibodies test in case you’re a late onset type 1 or whether there’s some other reason for the rise.

Annina said:

Hi Goonergal I asked for a C-Peptide test after reading about it here. But he refused he says I do not need one and he will not refer me for one. He is wanting me to go on insulin but that is thr last thing I want to do without the tests.

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Ah. That’s not helpful. Is there another GP at the surgery? The tests are available privately, but they’re not cheap!

I’m not sure what else to suggest.

Annina said:

Hi Goonergal I asked for a C-Peptide test after reading about it here. But he refused he says I do not need one and he will not refer me for one. He is wanting me to go on insulin but that is thr last thing I want to do without the tests.

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Your dr wants to put you on a serious life long medication without confirming is necessary? You are entitled to a second opinion. In your shoes I’d be availing myself of this.

I'm another who agrees that they should do the test. I really can't understand why doctors are reluctant to do a test where there might be real doubt and where the treatment may be different I understand concerns about costs but the wrong treatment may also cause unnecessary costs.

Annina said:

Hi Goonergal I asked for a C-Peptide test after reading about it here. But he refused he says I do not need one and he will not refer me for one. He is wanting me to go on insulin but that is thr last thing I want to do without the tests.

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The referral pathway for type 1 is rapid deterioration onto insulin after diagnosis. Your GP must be assuming you are type 2 as you haven't needed insulin for 8 years and that 50% of type 2's need insulin by 10 years.
https://www.england.nhs.uk/rightcar...40/2018/07/nhs-rightcare-pathway-diabetes.pdf
Insulin may be your best way forward.

ert said:

The referral pathway for type 1 is rapid deterioration onto insulin after diagnosis. Your GP must be assuming you are type 2 as you haven't needed insulin for 8 years and that 50% of type 2's need insulin by 10 years.
https://www.england.nhs.uk/rightcar...40/2018/07/nhs-rightcare-pathway-diabetes.pdf
Insulin may be your best way forward.

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Wow! 50%? ***runs off screaming***

Not sure what I would do, I agree about getting the correct tests. I’d also start testing regularly to see if you can find something that’s causing spikes.

I’d try dropping to ultra low carb, switch up the meal timing, I.e. eat breakfast and lunch, skip dinner.

Id also start a solid exercise routine, if you’re not already. Start with a 15 minute walk after each meal.

if none of that works, I guess the medication path

ert said:

The referral pathway for type 1 is rapid deterioration onto insulin after diagnosis. Your GP must be assuming you are type 2 as you haven't needed insulin for 8 years and that 50% of type 2's need insulin by 10 years.
https://www.england.nhs.uk/rightcar...40/2018/07/nhs-rightcare-pathway-diabetes.pdf
Insulin may be your best way forward.

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And low carb for that time could have drastically extended a slow onset LADA honeymoon. Others have reported a decade before being confirmed LADA/type 1 @searley i think is one.

The 50% needing insulin within 10 yrs is based on historical data where little was believed to be able to be done other than increasing meds on a carb heavy diet and waiting for the deterioration whilst doing little about the underlying issues of insulin resistance other than making it worse. I’m curious what more recent figures are like since remission has been accepted and actively sought.

Insulin might be the right answer but surely knowing this - rather than guessing - for a life long medication is the way forward.

Annina said:

I would do it privately but have not found one yet. I f you have any suggestions let me know! I am also thinking of
changing my surgery and GP as I am sure the other GP will not go against him.

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This service is not cheap and you need to be able to get to one of their clinics for the blood draw, but you may wish to investigate
https://privatebloodtests.co.uk/products/private-blood-test-for-insulin-c-peptide-in-blood

HSSS said:

And low carb for that time could have drastically extended a slow onset LADA honeymoon. Others have reported a decade before being confirmed LADA/type 1 @searley i think is one.

The 50% needing insulin within 10 yrs is based on historical data where little was believed to be able to be done other than increasing meds on a carb heavy diet and waiting for the deterioration whilst doing little about the underlying issues of insulin resistance other than making it worse. I’m curious what more recent figures are like since remission has been accepted and actively sought.

Insulin might be the right answer but surely knowing this - rather than guessing - for a life long medication is the way forward.

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@searley deteriorated onto insulin within 6 months after diagnosis. He was treated as a type 1 even if his GP notes said something different. The clinical notes suggest 6 years as the longest diagnosis for Lada and 3 years for clinical type 1 before insulin is required. This is why GP's won't offer the referral. The honeymoon period even if your body is producing trace insulin-like mine, will still require insulin.
The 'may' require insulin, is just that the GP is recommending it and the blood sugars are very high and they are not eating carbs or much food. Even if it's in the short term. I'm afraid, even though there are a lot of LCHF people on the forum like me, GP's still issuing more medication rather than recommending low carb diets for type 2 patients or blood sugar glucometer testing. A low-calorie diet between 800 to 1200 calories is a new recommendation.
https://www.nhs.uk/conditions/type-2-diabetes/food-and-keeping-active/

ert said:

@searley deteriorated onto insulin within 6 months after diagnosis. He was treated as a type 1 even if his GP notes said something different. The clinical notes suggest 6 years as the longest diagnosis for Lada and 3 years for clinical type 1 before insulin is required. This is why GP's won't offer the referral. The honeymoon period even if your body is producing trace insulin-like mine, will still require insulin.
The 'may' require insulin, is just that the GP is recommending it and the blood sugars are very high and they are not eating carbs or much food. Even if it's in the short term. I'm afraid, even though there are a lot of LCHF people on the forum like me, GP's still issuing more medication rather than recommending low carb diets for type 2 patients or blood sugar glucometer testing. A low-calorie diet between 800 to 1200 calories is a new recommendation.
https://www.nhs.uk/conditions/type-2-diabetes/food-and-keeping-active/

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Fair point re searley being on insulin. I had forgotten that in my early hours posting. My point remains if someone is struggling despite low carb and even keto then investigating their insulin levels surely is the right thing to do before starting them on a lifelong path, because for most it IS lifelong. Regardless of cause, maybe especially if it’s unclear what the cause is

Many gp’s appear to recommend insulin for severely insulin resistant people that still have more than normal levels of production too, for whom it isn’t necessarily a good option. Because they are guessing not testing. Or simply do not know or understand other more recent options for treatment in this situation. This must change.

This could be another way of looking at the same issue. https://medichecks.com/pages/search-results?q=Insulin

HSSS said:

Fair point re searley being on insulin. I had forgotten that in my early hours posting. My point remains if someone is struggling despite low carb and even keto then investigating their insulin levels surely is the right thing to do before starting them on a lifelong path, because for most it IS lifelong. Regardless of cause, maybe especially if it’s unclear what the cause is

Many gp’s appear to recommend insulin for severely insulin resistant people that still have more than normal levels of production too, for whom it isn’t necessarily a good option. Because they are guessing not testing. Or simply do not know or understand other more recent options for treatment in this situation. This must change.

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You're right in that if the GP's aren't recommending testing blood sugars to see what carbs the patient can tolerate, then that only option is more medication, which includes insulin. However, insulin resistance and beta cell function can be measured easily and accurately using the HOMA formula which specialist tend to do with a simple blood test of fasting glucose and insulin. C-peptide is only useful if it's off the scale low (less than 0.2 ng/mL on diagnosis which was me) which is type 1 or on diagnosis above the lab range supports insulin resistance. The normal range is not conclusive. In the lower normal range could indicate you are fasting or have eaten a lower carb meal.

My point is if not managed well most type 2's will exhaust their pancreas' beta cells, killing them, by spiking their blood sugars and running their blood sugars high. It happens over a longer period of time and many will eventually require insulin. This doesn't mean they have turned into type 1's. The HOMA formula results would be more useful here. Most will still need a specialist to calculate the results and interpret these tests. https://www.dtu.ox.ac.uk/homacalculator/

Type 1's immune system kill off most of their beta cells on diagnosis and the remaining cells don't linger for very long in a honeymoon. I had a bet with my consultant who diagnosed me as type 1 in the first week that if I could stay off insulin for 6 years, he might consider he was wrong. Two years later, I lost the bet.

In terms of insulin, Dr Bernstein puts most of his patients on small doses of insulin on diagnosis, no matter the type, as he says it's the best treatment for elevated blood sugars. I'm no longer scared of insulin as I was initially. It certainly helped normalise my blood sugars when extreme diet and exercise had no effect. I still choose to eat LCHF.