New LADA diagnosis

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Emma Pritchard

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Type 1.5 LADA
Hi , I am 43 and have been diagnosed with LADA this year and would love any advise as I seem to get very conflicting advise from healthcare professionals. I am not on medication and just test each morning and my sugars are anything from 9-18 which I have been told not to worry about and if they get to 25 to go to hospital! I have not seen a specialist as my GP says they can manage it. I was initially told to do a keto style diet but then my cholesterol consultant told me that’s the worst possible thing I could do so I am just having a balanced diet and try to get to the gym a couple of times a week and walk the dog! I also have genetic high cholesterol and an under active thyroid which are been controlled by medication.
 
Welcome @Emma Pritchard 🙂 I wouldn’t be happy waking to blood sugars that high :( LADA is a form of Type 1, as you probably know. No diet will cure it. Type 1/LADA needs insulin. More than that, it’s been suggested that early introduction of insulin helps preserve the remaining beta cells.
 
I’d insist on a referral to a specialist @Emma Pritchard Very few GP surgeries know much at all about Type 1/LADA. If you followed your GP’s advice, you could be walking around with blood sugars of 15-20 damaging your eyes, kidneys and nerves over time. Waiting until your blood sugar is 25 is negligent. I honestly can’t believe the lack of treatment you’re getting.

Do you have the means to test for ketones (Urine sticks or a ketone meter)? Diabetic ketoacidosis is a risk with Type 1/LADA and that’s serious. Do you test your blood sugar at other times of the day too? If not, you should, but mainly get some proper support. I was gobsmacked to read about the casual treatment you seem to be getting.
 
Inka said:
I’d insist on a referral to a specialist @Emma Pritchard Very few GP surgery’s no much at all about Type 1/LADA. If you followed your GP’s advice, you could be walking around with blood sugars of 15-20 damaging your eyes, kidneys and nerves over time. Waiting until your blood sugar is 25 is negligent. I honestly can’t believe the lack of treatment you’re getting.

Do you have the means to test for ketones (Urine sticks or a ketone meter)? Diabetic ketoacidosis is a risk with Type 1/LADA and that’s serious. Do you test your blood sugar at other times of the day too? If not, you should, but mainly get some proper support. I was gobsmacked to read about the casual treatment you seem to be getting.
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Thank you for your advise
 
Inka said:
I’d insist on a referral to a specialist @Emma Pritchard Very few GP surgery’s no much at all about Type 1/LADA. If you followed your GP’s advice, you could be walking around with blood sugars of 15-20 damaging your eyes, kidneys and nerves over time. Waiting until your blood sugar is 25 is negligent. I honestly can’t believe the lack of treatment you’re getting.

Do you have the means to test for ketones (Urine sticks or a ketone meter)? Diabetic ketoacidosis is a risk with Type 1/LADA and that’s serious. Do you test your blood sugar at other times of the day too? If not, you should, but mainly get some proper support. I was gobsmacked to read about the casual treatment you seem to be getting.
Click to expand...
Thank you for your advise
Inka said:
Welcome @Emma Pritchard 🙂 I wouldn’t be happy waking to blood sugars that high :( LADA is a form of Type 1, as you probably know. No diet will cure it. Type 1/LADA needs insulin. More than that, it’s been suggested that early introduction of insulin helps preserve the remaining beta cells.
Click to expand...
thank you for your advise
 
@Emma Pritchard I agree with @Inka.
If you have LADA, you have Type 1 diabetes which means the cells which produce insulin are dying off so you need to inject insulin.
Running your BG as high as you are seeing can cause long term damage. The target range for people with Type 1 diabetes is between 4 and 7 ... considerably lower than your levels.
Most GPs are used to working with people with type 2 diabetes (over 90% of people with diabetes have type 2) and telling you that your levels are ok is proof that, like many, your GP does not understand Type 1 diabetes.

If you have the correct medication, Type 1 diabetes, it not a reason to change your diet. The question of keto diet for Type 1 is something which is questioned by others, no just your cholesterol consultant: people with Type 1 are at risk of Diabetic Ketoacidosis (DKA) which is often diagnosed by high blood sugars and high ketones. A keto diet will raise your ketones. DKA can be fatal.

If your GP is not supportive, is a referral to an endocrinologist possible via your cholesterol consultant? You certainly need assistance and the right treatment which will include insulin and should include a Libre to track your blood sugars,
 
I agree with the others. Your GP is playing fast and loose with your long term health in not commencing treatment when your levels are so high. I hope you have a means of testing both BG levels and for Ketones to keep yourself safe. You should test for ketones when your BG levels are persistently mid teens or above. Usually the cheapest option is Ketostix which you dip in your urine and compare to a colour chart on the pot. If you don't have any, they can be purchased from a pharmacy or online for about £5 for a pot of 50 and would be a worthwhile investment, so that if ketones start to develop you can seek emergency medical assistance.
I am however curious to know who diagnosed you as LADA and how they came to that decision? ie. What tests were done and when and what were the results? If your GP has diagnosed you as LADA then I find it extremely odd that they are then not treating you appropriately. Most GPs wouldn't even consider testing for LADA or possibly even know what it is, so to, presumably test you for it and then not treat you when the result is positive, just seems bizarre!
 
Hi @Emma Pritchard, I don’t have any advice (I’m fairly new to this) but I wanted to share my experience as I thought it might help to have something to compare your experiences to.

I was diagnosed with LADA this summer. Within a week of getting the antibody test results back, my GP had worked out what my insulin dose/ratios should roughly be, started me on insulin, and prescribed me a CGM. My HbA1c was 58 - an online converter suggests that this means my blood sugars were running at an average of 9 over the previous 3 months. My GP has referred me to a specialist but said that it could be up to a year before I get seen, but he is confident that he can help me manage this (and I do believe he is correct, given everything he has done for me so far).

I don’t know if that helps but I hope you can get the treatment that you need. Hugs!!
 
rebrascora said:
I agree with the others. Your GP is playing fast and loose with your long term health in not commencing treatment when your levels are so high. I hope you have a means of testing both BG levels and for Ketones to keep yourself safe. You should test for ketones when your BG levels are persistently mid teens or above. Usually the cheapest option is Ketostix which you dip in your urine and compare to a colour chart on the pot. If you don't have any, they can be purchased from a pharmacy or online for about £5 for a pot of 50 and would be a worthwhile investment, so that if ketones start to develop you can seek emergency medical assistance.
I am however curious to know who diagnosed you as LADA and how they came to that decision? ie. What tests were done and when and what were the results? If your GP has diagnosed you as LADA then I find it extremely odd that they are then not treating you appropriately. Most GPs wouldn't even consider testing for LADA or possibly even know what it is, so to, presumably test you for it and then not treat you when the result is positive, just seems bizarre!
Click to expand...
I was diagnosed after 2 bloods tests by the GP and I have never been told to test for ketones
 
Emma Pritchard said:
I was diagnosed after 2 bloods tests by the GP and I have never been told to test for ketones
Click to expand...

Ketones are a risk due to the possibility of diabetic ketoacidosis (DKA). There’s some information here:

www.nhs.uk

Diabetic ketoacidosis

Find out about diabetic ketoacidosis (DKA), including what the symptoms are, when to get medical help and how to prevent it.
www.nhs.uk www.nhs.uk

I was on the verge of DKA when I was diagnosed. Although I was seriously ill, I didn’t feel that bad and was surprised when the doctor called an ambulance. Luckily he’d checked my blood sugar and also my ketones with a urine dipstick. As @rebrascora said, you can buy urine ketone test strips very cheaply and that definitely worth doing.
 
Can you tell us a bit about how you came to be diagnosed and when?
The blood tests you had done, do you know what they were? Do you have access to your results online?

Has your doctor given you any guidance as to when he will introduce medication? If your levels are between 9 and 18 on a morning then they may be considerably higher after meals. Do you test pre and post meal to see how your body is responding to the food you are eating.
 
Inka said:
Ketones are a risk due to the possibility of diabetic ketoacidosis (DKA). There’s some information here:

www.nhs.uk

Diabetic ketoacidosis

Find out about diabetic ketoacidosis (DKA), including what the symptoms are, when to get medical help and how to prevent it.
www.nhs.uk www.nhs.uk

I was on the verge of DKA when I was diagnosed. Although I was seriously ill, I didn’t feel that bad and was surprised when the doctor called an ambulance. Luckily he’d checked my blood sugar and also my ketones with a urine dipstick. As @rebrascora said, you can buy urine ketone test strips very cheaply and that definitely worth doing.
Click to expand...
Thank you for your help
 
Apologies, just read my post above back to myself and it sounds like the Spanish Inquisition! 🙄 Just really concerned for you and it is helpful to know what has been done so that we can advise you on what to do for the best.
 
rebrascora said:
Can you tell us a bit about how you came to be diagnosed and when?
The blood tests you had done, do you know what they were? Do you have access to your results online?

Has your doctor given you any guidance as to when he will introduce medication? If your levels are between 9 and 18 on a morning then they may be considerably higher after meals. Do you test pre and post meal to see how your body is responding to the food you are eating.
Click to expand...
I was told that they can tell from my anti body results 1 was negative and the other positive and then said it was LADA. They have told me just to test first thing but as I had a really result on Monday (17.6) I then tested for 48 hours but pre meals and before bed. They were highest morning and night and in they sat around 10
 
Hello @Emma Pritchard

Sorry to hear about your diagnosis, and especially about the rather surprising approach from your GP.

10mmol/L is often the ‘renal threshold’ where the kidneys would start to try to flush out the excess glucose through urination, leading to two of the 4Ts of diabetes - Toilet and Thirsty. The others being Tired and Thinner.

Have you been feeling more weary recently? And have you lost any weight without trying?

I really think you do need to be started on insulin sooner rather than later - even if only on fairly low doses while you still have a small amount of beta cell mass remaining. It is confusing, and quite surprising that this hasn’t happened already!
 
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