Disappointed after DSN appointment

[kimrooney89]

@kimrooney89 I know it's hard, but DSNs are there to provide a service to you, not to tell you what to do. You will have to be fairly hard on this one to get what you want. It is not acceptable that she expects you to get up at 3am and 5am to test and correct given your life situation. The next time you speak to her, make it clear that the week of 3 and 5 am waking is not a way you can live your life and you would like her to assist you rather than stand in your way.

She seems to be approaching this as though living with Type 1 is a formality, and I think you need to get her to reappraise her point of view. If I was you, for this week, I wouldn't change your routine in terms of eating and just capture the data that shows your issues. I'd also ask for a meeting with your consultant sooner, due to the issues you are having. Your DSN sounds very unreasonable to me.

I completely agree! She's giving me generic information that just will not work for my individual needs/circumstances.

I'm going to call the clinic on Monday morning and ask for the first available appointment with my consultant so that other options can be discussed.

No I'm not going to change my eating routine, although she also told me to 'scrap the LCHF eating and just have a balanced diet'. I'm quite happy with my LCHF meals and have also lost 5lb just since Sunday.

I feel as though I'd be better banging my head off of a brick wall.
I will try her suggesrion of having my Levemir before bed and soon as i wake (rest and rise) as she said that may give me more coverage as there would be 8 hours between injections rather than 12. I will carry on as I have been othwrwise and ring her next Friday with the results.

 

[kimrooney89]

I also meant to,say that I'm not sure a course is the answer, unless your lacking knowledge (and you don't seem to be).

I hate the implication that having problems when you have Type 1 must always mean that you're doing something wrong. Sometimes we're affected by things outside our control eg DP!

Exactly. I felt as though she was always trying to put the blame on me when in reality DP is hormonal and as you rightly stated, outwith anyone's control

 

[drahawkins_1973]

I agree with all that's been said and definitely stick to your guns it's not your fault. I had a similar/ish problem when whatever I did with my levemir dose I'd always get a rise in my sugar levels late in the evening. I wasn't comfortable giving myself correction doses before going to bed. My dsn asked why I was worried, he suggested to just don't take a correction and my levels would naturally come down overnight!!! He wouldn't change my basal insulin like I wanted so I spoke to my consultant who backed me up and he conceded to change it in the end.
Shouldn't have to be a battle but sometimes it is. Hope you get it sorted.

 

[kimrooney89]

I agree with all that's been said and definitely stick to your guns it's not your fault. I had a similar/ish problem when whatever I did with my levemir dose I'd always get a rise in my sugar levels late in the evening. I wasn't comfortable giving myself correction doses before going to bed. My dsn asked why I was worried, he suggested to just don't take a correction and my levels would naturally come down overnight!!! He wouldn't change my basal insulin like I wanted so I spoke to my consultant who backed me up and he conceded to change it in the end.
Shouldn't have to be a battle but sometimes it is. Hope you get it sorted.

I'm not comfortable adjusting my Levemir either as it's resulted in me having hypos in my sleep previously, usually between midnight and 1am. Fingers crossed I'll have the same luck with my consultant

 

[Jamesuk9]

Not sure if this will help, but I read yesterday that a freestyle libre sensor can be read by an android device running the app, eliminating the need to buy the complete kit. May be worthwhile for a one off 14 day cgm picture that won't cost more than about 50 quid.

 

[noblehead]

My DSN called me around 15 minutes ago...She advised that she's put me on the waiting list for the Adapt course and also asked that I have a carb free meal to check that my Levemir is working. I advised I'm already carb free (already told her this at today's appointment) so instead she wants me to completely miss a meal out...

A basal test has to be a fasting one @kimrooney89, even if you eat a carb-free meal it will interfere with the bg results (that is why type 1's who follow a very low-carb diet still need to bolus at meal-times).

Have a look at the following which has some good information on basal testing:

https://mysugr.com/basal-rate-testing/

Keep persevering and push for a pump. Good luck.

 

[slip]

Sorry you're having to deal with a DSN from hell! LOL

Just wondering when and what dose you do your levemir?

 

[slip]

My DSN wants me to do a 3am and 5am check every night so that I an have a correction injection of Novorapid to limit the impact of the DP.

At this point I would have asked for her mobile number, for those times when I wasn't feeling comfortable working out what correction to give at 3am bleary eyed..........

 

[kimrooney89]

Sorry you're having to deal with a DSN from hell! LOL

Just wondering when and what dose you do your levemir?

I'm on a split dose so 12u am and pm. I was always told both injections should be 12 hours apart so have always administered them at 7am and 7pm. Today they suggested 10.30pm (or just before I head to bed) and 6.15am (as soon as I wake) They're hoping that only having 8 hours between injections will give me more coverage against the DP

 

[kimrooney89]

At this point I would have asked for her mobile number, for those times when I wasn't feeling comfortable working out what correction to give at 3am bleary eyed..........

Wahahaha! I wish I'd though of suggesting that to her today...her face would've been a picture!! I could've gave her a blow by blow update

 

[kimrooney89]

A basal test has to be a fasting one @kimrooney89, even if you eat a carb-free meal it will interfere with the bg results (that is why type 1's who follow a very low-carb diet still need to bolus at meal-times).

Have a look at the following which has some good information on basal testing:

https://mysugr.com/basal-rate-testing/

Keep persevering and push for a pump. Good luck.

Thank you for that information @noblehead, that's really helpful

 

[donnellysdogs]

I'm a strange person that has been thru all
Basals and 3 pump... on tresiba at moment and it is the best with my DP and waking phenomenon. Previoysly had to wake at 4am and an hour before waking for 4 injections (total). Now I wake at 7am for 2 jabs.
Had to have 3 jabs of basal a day before...

Have been thru endless regimes and I've other medical stuff going on too.. waking phenonem has also been a huge problem and having a jab for putting my feet to floor is necessary.

I had a diabetes manager to our home who admitted they did not have the lnowledge to deal with my problems. I asked for teriary care. The manager denied it possible. A week later she phoned and admitted it was possible and she recommended that Indid go to a tertiary care hospital.

Your health people are ill informed. Fight, and get better care.

 

[catapillar]

@kimrooney89 just realised you are in Scotland so you might want to have a look at insulin pump awareness Scotland on accessing pumps in Scotland. They might be able to help you put your case together before you meet with your consultant.

http://www.ipagscotland.org/how.html

 

[kimrooney89]

@kimrooney89 just realised you are in Scotland so you might want to have a look at insulin pump awareness Scotland on accessing pumps in Scotland. They might be able to help you put your case together before you meet with your consultant.

http://www.ipagscotland.org/how.html

That's great @catapillar - thank you so much

 

[KarenAdamson]

The overnight BG testing isn't a full time thing it's to check your basal insulin dosage. These will show if you are going hypo during the night and then having a liver dump. When mine were tested I had to do it on two separate nights over a one week period so it's not as silly as it sounds. Your DSN should have explained why you should do it. If you think something is silly just ask them why?

What does DP stand for?

 

[azure]

The overnight BG testing isn't a full time thing it's to check your basal insulin dosage. These will show if you are going hypo during the night and then having a liver dump. When mine were tested I had to do it on two separate nights over a one week period so it's not as silly as it sounds. Your DSN should have explained why you should do it. If you think something is silly just ask them why?

What does DP stand for?

Dawn Phenomenon

 

[kimrooney89]

The overnight BG testing isn't a full time thing it's to check your basal insulin dosage. These will show if you are going hypo during the night and then having a liver dump. When mine were tested I had to do it on two separate nights over a one week period so it's not as silly as it sounds. Your DSN should have explained why you should do it. If you think something is silly just ask them why?

What does DP stand for?

It actually would be an ongoing thing @KarenAdamson. The 3am and 5am checks are for me to have a correction to try to limit my raised BG levels which is caused by Dawn Phenomenon (DP) so I would be doing it every single night...Not a longterm solution from my perspective, I have 2 children (6 and 2.5) and am currently studying full-time at university.

 

[donnellysdogs]

I've had DP and WP For 30 + yeaars. Degludec allows me to sleep most days till 7am. Never had an isulin allow me to do that. I still have to do a pre bolus before actually getting up at that time but no longer having to wake at 4am !!

 

[LottyT]

I would request to see a consultant - you might have to go back to your GP for this. Your situation sounds similar to mine - I was put on a pump 5 years ago and it solved my morning highs. Also switching to Apidra from novorapid helped. Hope you get some useful action soon!

 

[tigger]

@kimrooney89 I think everyone else has given you great advice but I just wanted to add that you are not alone in that experience with DSNs. When I had just had my first child and my bs was all over the place I asked for advice and was told I had to test through the night on a 2 hourly basis e.g. at 12, 2, 4, 6 etc. I said I had a baby on a 2 hour feeding schedule ie begining of the feed to beginning of the next is 2 hours so was testing before and after each one already. Was told this wasn't sufficient and would need to set an alarm for exactly 12, 2, 4 etc!!!!!!!


You can put all the advice you were given in an email and send it back to her along with the info you've given here to make her/ and her superiors more aware of the requests she is making or just push to see someone more reasonable. I'd go for the latter. If you can't get pump funding, consider moving to a hospital with a more open attitude (Input may have advice on this) or consider switching your basal insulin.

Someone else mentioned libres above.They're great and you can get a free app on a smart phone to read one so can start for as little as £50 for a 2 week sensor. I heard that some hospitals will give away one for a free trial. Maybe talk to your consultant about this?