Newly diagnosed - some questions. Thanks.

Millie74

Well-Known Member
Messages
217
Hi I was diagnosed as Type 1 LADA 18 months ago, I am still learning! I have found this site very useful especially for tips when having a problem. I too did not want to go on insulin, had weight to lose and was eating low carb. Since that time I have realised that there is a lot of information on preserving beta cells by taking background (basal) insulin, I would recommend Dr Bernstein's book 'my diatbetes solution' he is in favour of low carb diet and it's very informative. I saw on this site many people following it. my endocrinologist insists (I think debatable!) Metformin helps you lose weight (I took it short term as struggled with slight upset stomach even the slow release tablets - make sure you get glucophage the slow release one if you decide to try it.) Short term (8months) I think it helped me. I tried coming off it and as there was no difference to my blood sugars my nurse agreed there was no point in taking it anymore, I had met my target weight and lost some more.
When ill your blood sugars go sky high, even without food. I ended up in hospital because of this (you will at some point get an infection or bad cold and may (every one is different , but you are at risk of this now) need fast acting Bolus insulin very quickly. Accept it and use when needed better than a 999 call. Certainly for me my range can change quickly especially when ill or exercising and this seems to be typical of LADA so careful monitoring is required.
I lost 2 stone in 6 months when first diagnosed and on low level of basal (slow background) insulin, fast acting insulin only if needed, and 2x500g glucophage tablets, I was on a low carb 20g carb per day diet I slowly increased this to about 50g carb per day on the advise of the endocrinologist. Calories about 1000-1200 per day. I also exercise daily.
Now I am maintaining my weight I eat between 60-80g carb per day and about 1200/1300 calories per day. I don't count so strictly now. However I cannot eat bread, pasta, rice and only very small amount of potato as sends my blood sugars high and seems to stop me losing weight. I hardly bother with potato any more. The carbs I do eat are oats (porridge every other day), one slice every other day of pure rye bread, yogurt and root veg. Insulin is natural and vital for you to live, please do accept it but ask to start slowly. If you are eating carefully and exercising I don't think you will gain weight, remember I lost 2 stone. Personally I am glad I was persuaded to try Metformin short term, as the combination of this and the low levels of insulin worked very well and I can say I am slim for the last year. Feel free to ask questions, do lots of research and I hope you find the solution you need, I can really relate to your post so have a lot of hope that you will be ok.
 

Millie74

Well-Known Member
Messages
217
Interesting to read your experience. It doesn’t sound too bad and good you have managed to continue moderate low carb and 1200 cals. I will ask if I need insulin when I first see the endocrinologist due to high GAD antibodies, if it could be slow and maybe just the background one? Basal insulin? Is the background one just once a day in morning? Can you hypo on it? I know I need to do another hba1c in March and if it’s not as good as the December 45mmol, it may definitely mean insulin. Just confused as the letter to GP says I may be LADA. Not definitely am 1.5.
 

cz_dave

Well-Known Member
Messages
448
Type of diabetes
Type 1
Treatment type
Insulin
Interesting to read your experience. It doesn’t sound too bad and good you have managed to continue moderate low carb and 1200 cals. I will ask if I need insulin when I first see the endocrinologist due to high GAD antibodies, if it could be slow and maybe just the background one? Basal insulin? Is the background one just once a day in morning? Can you hypo on it? Ing know I need to do another hba1c in March and if it’s not as good as the December 45mmol, it may definitely mean insulin. Just confused as the letter to GP says I may be LADA. Not definitely am 1.5.
In my case, the presence of GAD antibodies was the definitive proof of being Type 1/LADA. Yes, you need to start injecting insulin and yes, you may hypo. The good news is that CGM devices got so much better (I now use Dexcom G6) and so definitely try to get one. After some learning, you'll be able to do pretty much anything, dancing included!
 

Millie74

Well-Known Member
Messages
217
I’ll wait to see what the endocrinologist says 12th March. The diabetic nurse that contacted me at her request contacted me regarding sugars and my hba1c which was 45mmol. She said metformin was ok for now, to wait for the March appointment and to contact her if I had three readings over 13. It’s been a long wait to see an endocrinologist. They’re obviously not worried. I feel better informed from being on this site. Have lots of questions to ask at the appointment.
 

85percent

Active Member
Messages
29
Type of diabetes
Type 1.5
Treatment type
Insulin
@Millie74 @cz_dave @Hertfordshiremum @Circuspony @Swillbos

Thanks for you responses - interesting, informative and supportive. You've all really helped me overcome my intial acceptance of my diagnosis and my reluctance with taking insulin.

I have now seen the diabetic specialist nurse - she was really nice and explained everything really well. I wouldnt say she is on the cutting egde of treatment protocols but she listened and understood, and I respond well to 'nice'. She also gave me the '2-1' readings machine (ketone & blood sugar).

So after downloading my readings to view on her screen she could see it was mainly all single numbers (mostly within range, in green) and a some double digits readings here and there (in red). Based on the readings she wasnt sure whether to start me on insulin - as my blood sugars were coming back down (albeit alittle slower than normal) - and so she went to speak to the doctor to get his opinion.

I had said I was unsure / anxious about taking insulin BUT I was completely onboard with whatever was prescribed as I know its recommended that you start early to maintain the honeymoon period.

She returned and said the doctor recommended I start on 4 units of basal insulin once a day (without viewing my readings) and they can tweak it at the next review (in 7 weeks) if necessary.

So I plan to start taking it - tomorrow or Feb 1st at the lastest. I just wanted to read up on taking it in 2 doses or one. I had heard Dr Bernstein say to take it 2 doses but at that time I didnt take in the full context and I want to read his book or watch some key vidoes to see what his best practice is before proceeding.

I might even start with 1 unit for 1 week then 2 units and so on.. and see how it affects my blood sugar.

I noticed that peoples GAD antibody levels are in the thousands on this thread and another. My GAD was 182 and the nurse said that was high and strong confirmation. If 182 is high then what would 1679 be described as... It has to be under 1.0 to be normal....

Also, I said I'd had a c-peptide test - I was incorrect (I'm sure I've seen c-peptide somewhere on a blood test...). I can only find an islet cell antibody test which came back negative. Im going to ask my GP for a c-peptide test as I forgot to ask the nurse. Are there any other tests worth doing? My GP is usually quite good - hopefully he will do any tests I ask for.

Insulin type - Lantus soloStar / insulin glARGine 1ml contains 100 units (3.64mg) Insulin glargine. Any info on this? Typical?
 
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Millie74

Well-Known Member
Messages
217
@Millie74 @cz_dave @Hertfordshiremum @Circuspony @Swillbos

Thanks for you responses - interesting, informative and supportive. You've all really helped me overcome my intial acceptance of my diagnosis and my reluctance with taking insulin.

I have now seen the diabetic specialist nurse - she was really nice and explained everything really well. I wouldnt say she is on the cutting egde of treatment protocols but she listened and understood, and I respond well to 'nice'. She also gave me the '2-1' readings machine (ketone & blood sugar).

So after downloading my readings to view on her screen she could see it was mainly all single numbers (mostly within range, in green) and a some double digits readings here and there (in red). Based on the readings she wasnt sure whether to start me on insulin - as my blood sugars were coming back down (albeit alittle slower than normal) - and so she went to speak to the doctor to get his opinion.

I had said I was unsure / anxious about taking insulin BUT I was completely onboard with whatever was prescribed as I know its recommended that you start early to maintain the honeymoon period.

She returned and said the doctor recommended I start on 4 units of basal insulin once a day (without viewing my readings) and they can tweak it at the next review (in 7 weeks) if necessary.

So I plan to start taking it - tomorrow or Feb 1st at the lastest. I just wanted to read up on taking it in 2 doses or one. I had heard Dr Bernstein say to take it 2 doses but at that time I didnt take in the full context and I want to read his book or watch some key vidoes to see what his best practice is before proceeding.

I might even start with 1 unit for 1 week then 2 units and so on.. and see how it affects my blood sugar.

I noticed that peoples GAD antibody levels are in the thousands on this thread and another. My GAD was 182 and the nurse said that was high and strong confirmation. If 182 is high then what would 1679 be described as... It has to be under 1.0 to be normal....

Also, I said I'd had a c-peptide test - I was incorrect (I'm sure I've seen c-peptide somewhere on a blood test...). I can only find an islet cell antibody test which came back negative. Im going to ask my GP for a c-peptide test as I forgot to ask the nurse. Are there any other tests worth doing? My GP is usually quite good - hopefully he will do any tests I ask for.

Insulin type - Lantus soloStar / insulin glARGine 1ml contains 100 units (3.64mg) Insulin glargine. Any info on this? Typical?
 

Millie74

Well-Known Member
Messages
217
Sounds like it was a good appointment. Like you I’m not keen on insulin, but will do whatever they suggest. Is basal the long acting one. Did they suggest doing this in the morning? What was your last hba1c out of interest?

I rang the diabetic nurse this morning having read this discussion. Again she asked my fasting and post meal blood sugars and said they were ok. She said she had one LADA lady that had had it for 4 years, but still wasn’t on any meds or insulin. I told her this morning before breakfast my blood was 8.7, which is higher than usual, but wasn’t concerned.

She said she is going to send another form for blood test for c peptide and another hba1c to do before I see endocrinologist. She said the high 1679 antibodies shows define LADA. I think I am in denial. She knows I am low carbing. Said that’s ok. She said my last c peptide showed I was still producing insulin. I rarely get any blood sugars in double figures. She said there will be no more meds for LADA in addition to metformin. That the only treatment is insulin. Could be 1 month. Could be a few years. Anyway, it was just the nurse that works with endocrinologist. Not had Dr view yet.

Sounds like you are in good hands and they are starting slowly. You have researched it all well. Did they say weight should stay the same on the insulin? Good luck.
 

cz_dave

Well-Known Member
Messages
448
Type of diabetes
Type 1
Treatment type
Insulin
@Millie74 @cz_dave @Hertfordshiremum @Circuspony @Swillbos

She returned and said the doctor recommended I start on 4 units of basal insulin once a day (without viewing my readings) and they can tweak it at the nextreview (in 7 weeks) if necessary.

So I plan to start taking it - tomorrow or Feb 1st at the lastest. I just wanted to read up on taking it in 2 doses or one.

Sounds good. This is a small dose, I would not bother splitting it into two doses but that's just me.

Even though it's a small dose, be careful if you do sports, you may want to decrease by e.g. 25 to 50% after an intense workout.

I was started on Lantus too, later switched to Levemir. At your next appointment, you may want to ask to add mealtime insulin such as Novorapid in addition to Lantus.
 
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