Confused and looking for advice

[shiffcam13]

Hi everyone. Diagnosis recently changed to LADA. Was given a libre to try for two weeks. Results relayed back to hospital. Two weeks are now up - average blood sugars 8 for last 2 weeks with spikes and alarms at 13 on a few occasions after food or exercising. Thought that seemed high and was fully expecting changes in meds, however hospital say these are levels close to being non diabetic and have said no need for libre, just to finger prick test every second day in the morning and continue taking metformin. Next review 6 months. Currently on low carb diet but have been advised to eat normal balanced diet. While am pleased they think sugar levels ok am surprised and worried levels will rise if I eat more carbs etc. would be interested to hear what you think. Perhaps am just becoming a bit obsessive!

 

[Leadinglights]

I will let other people comment but it does seem particularly peculiar advice but good that you have actually got a diagnosis.

 

[Inka]

@shiffcam13 That’s a risk of eating low carb - it can mask the LADA, if you get what I mean. How many carbs a day are you eating?

 

[shiffcam13]

Have upped it a bit as trying maintain or put on weight as lost 2 stone, so now prob 80-90 g so not too strict.

 

[Inka]

Have upped it a bit as trying maintain or put on weight as lost 2 stone, so now prob 80-90 g so not too strict.

Still fairly low though. Have you experimented with slightly larger meals to see the effect on your blood sugar?

 

[shiffcam13]

Thanks @Inka and @Robert459. Going to try more carbs and finger prick test. Libre runs out today and they say I don’t need it so not prescribed any more. Have been told only need to finger prick test once every second day. Queried this but DSN was very firm that was what consultant said. Thought average glucose of 8-9 would be considered high but apparently not. Just very confused. Will do as they say but will test more than advised. Feels like have taken a step backwards.

 

[SB2015]

As you have been confirmed as LADA the advice given does seem strange.

You have some antibodies at work and they are continuing to destroy the beta cells that you have, and it would be good to protect those that you have remaining. The advice is to use insulin. I am unclear whether you are in the hands of your GP Practice or the specialist team. I would want the advice of the specialists at this stage, so that they can help you monitor what is happening and manage the changes that will happen.

Certainly a good plan to log your glucose levels and do this alongside a diary of the amount of carbs you are eating. With T1/LADA you should be able to eat a normal diet, matching what you choose to eat with insulins injections.

I am surprised that the nurse feels that levels of 8/9 are okay before meals. The Libre certainly shows you what is happening between finger pricks and gives you far more data to work from, and helps with decision making. All T1/LADA are supposed to have access to these now.

 

[shiffcam13]

Hi @SB2015. Thanks for your reply. Advice came from DSN at hospital she was relating what consultant had advised. So basically that’s what the specialist is telling me. Libre runs out today, looking online it would seem that not all LADA patients can get free libre - am in Scotland- down to decision of consultants/medical team. This may have changed though. Ate about 15g carbs for breakfast and libre alarm went off at 13.7 now down to 11. Will do as you suggest and keep a food diary etc and will eat more ‘normally’. Think will also see if can get a free trial libre for 2 weeks and then at least hospital will have the data. If levels increase dramatically then will contact the hospital team. Prospect of uncontrolled rising levels is scary.

Don’t understand the conflicting advice as a previous hospital doctor suggested starting insulin as soon as LADA was confirmed to try and preserve/protect remaining beta cells as you also mentioned.

Thanks for taking the time to reply. Maybe they just want me to eat normally and see what happens before starting insulin. If so I expect the alarms on my next libre will be going off regularly!

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[shiffcam13]

Alarm went off again this morning 13.7 after about 15g carbs down to 11 an hour later. ‍♀️

 

[Inka]

Thanks @Inka and @Robert459. Going to try more carbs and finger prick test. Libre runs out today and they say I don’t need it so not prescribed any more. Have been told only need to finger prick test once every second day. Queried this but DSN was very firm that was what consultant said. Thought average glucose of 8-9 would be considered high but apparently not. Just very confused. Will do as they say but will test more than advised. Feels like have taken a step backwards.

That does sound strange. Personally, I’d ignore that and finger-prick a lot more often in order to build up an accurate picture of what’s happening.

I’d also increase carbs, count and record carbs accurately, and include before meal and two hours after meals tests. Again, I can only say what I’d do personally, but I’d do this quickly over a period of days in the hope that that would speed up any action.

 

[shiffcam13]

Think that’s what I’ll do @Inka . Have also ordered libres (self funded). Assume hospital will still receive the data from them, then if levels increase they will have the info. Will keep a food diary and carb count too . Still a bit freaked out but have a plan of action now. Thanks everyone for the support.

 

[SB2015]

Assume hospital will still receive the data from them, then if levels increase they will have the info.

You can choose to share your data. Hospitals use different systems so good to find out which one they use. I suspect that many will be able to access Libreview. Others use Diasend.

 

[shiffcam13]

Hi @SB2015 - yes checked and can send data direct hospital as before from libre. New sensors won’t arrive for another 4-5 days but as soon as they do will increase carbs and see what happens. Have gotten used to eating low carb now am not sure what ‘carby’ things I want to eat ! Maybe just some small amounts of grains and pulses to start with. ☺️ . Thanks for the advice

 

[SB2015]

Hi @SB2015 - yes checked and can send data direct hospital as before from libre. New sensors won’t arrive for another 4-5 days but as soon as they do will increase carbs and see what happens. Have gotten used to eating low carb now am not sure what ‘carby’ things I want to eat ! Maybe just some small amounts of grains and pulses to start with. ☺️ . Thanks for the advice

You should be able to eat whatever you want to once your doses are sorted out and you learn to match your insulin to the amount of carbs you want to eat. It takes some time to get there but just take things step by step.

 

[shiffcam13]

Thanks @SB2015 - hoping docs will prescribe insulin soon. . At the moment just on metformin.