Disappointed after DSN appointment

[kimrooney89]

Afternoon

I'm feeling rather disappointed and unsupported after my appointment with my DSN.

She confirmed I have DP (have known this since diagnosis 10.5 years ago), confirmed I am insulin resistant until mid afternoon (I am aware of this from BG readings and also the DP), and advised a LCHF eating regime MAY help me to stabilise my readings - I already follow this.

I queried a CGM as i go to bed with a BG reading of 6-8mmol but wake 2.5 tomes higher...I was told instead to set an alarm and do a 3am and 5am BG check 'to see what's going on'.

I asked about pump therapy 'it COULD be in the pipeline further down the line'.

I asked about metformin/change to my current insulin... 'Split Levemir and Novorapid is actually the best regime for you'.

I expressed a concern over the impact of unstable BG levels and constant morning highs of 14-18mmols. The response I got...'Awk they're not too bad, they PROBABLY wouldn't cause any lasting damage'.

Follow up appointment was given to me for the 10th of March...

 

[tim2000s]

When you get feedback like that, I'm afraid that you have to go on the offensive. Usually the best way to do so is to ask the DSN to put themselves in your shoes, and ask how they would feel having to get up at 3am or 4am to give themselves a blood test and injection, to ensure that they weren't going to go blind or lose a foot. Remind them that time spent at a higher level results in a higher Hba1C, and that the variation in glucose levels also introduces risks. Then ask them again why they think it's okay to fob you off with those arguments? If I was you, I'd get on the phone and ask to speak to them, saying you've thought about the appointment this morning, and your concerns are..... and make sure you have a list based on your feedback above. If you want we can find you some of the research that backs up the arguments.

Then see what her reaction is when you've basically accused her of trying to shorten your life and make your quality of life worse.

I'm not sure she'll see things in quite the same way.

 

[Nidge247]

@ kimrooney89

What time is your last meal at night? I ask as your body will often liver-dump glucose during the night (not everyone, but most I've spoken to). I've found out not to have any carbs after 9pm, will keep me within range, but I can happily go to bed with levels around 3.8 - 4.5, knowing they will always be around 6 - 6.5 in the morning. Previously my DN insisted I was 6.5+ when going to bed, which meant I was way too high in the morning.

 

[azure]

Sorry to hear that @kimrooney89 It seems like some people do like to drag things out by making suggestions and deferring action,

I agree with Tim that you'll have to be more forceful - politely, of course. I would be particularly concerned by her comment about your levels being "not too bad" at 14--18mmols. Tell her bluntly, you feel like **** at those levels.

When are you next seeing your consultant? Could you ask about a pump then?

 

[kimrooney89]

@ kimrooney89

What time is your last meal at night? I ask as your body will often liver-dump glucose during the night (not everyone, but most I've spoken to). I've found out not to have any carbs after 9pm, will keep me within range, but I can happily go to bed with levels around 3.8 - 4.5, knowing they will always be around 6 - 6.5 in the morning. Previously my DN insisted I was 6.5+ when going to bed, which meant I was way too high in the morning.

My last meal is between 5-6pm. I don't have a supper or any snacks after my low carb dinner.

 

[kimrooney89]

When you get feedback like that, I'm afraid that you have to go on the offensive. Usually the best way to do so is to ask the DSN to put themselves in your shoes, and ask how they would feel having to get up at 3am or 4am to give themselves a blood test and injection, to ensure that they weren't going to go blind or lose a foot. Remind them that time spent at a higher level results in a higher Hba1C, and that the variation in glucose levels also introduces risks. Then ask them again why they think it's okay to fob you off with those arguments? If I was you, I'd get on the phone and ask to speak to them, saying you've thought about the appointment this morning, and your concerns are..... and make sure you have a list based on your feedback above. If you want we can find you some of the research that backs up the arguments.

Then see what her reaction is when you've basically accused her of trying to shorten your life and make your quality of life worse.

I'm not sure she'll see things in quite the same way.

@tim2000s thank you. I called the clinic, there are appointments on at the moment but have a callback arranged for 4pm this afternoon.
I've made some notes based on the replies and will raise these when she calls

 

[azure]

My last meal is between 5-6pm. I don't have a supper or any snacks after my low carb dinner.

Have you tried a) having a small amount of carbs in your evening meal? or b) eating a low carb small supper to see if that has any effect at all?

With the lack of progress from your appointment, experimenting a little would be worth a try.

 

[kimrooney89]

Sorry to hear that @kimrooney89 It seems like some people do like to drag things out by making suggestions and deferring action,

I agree with Tim that you'll have to be more forceful - politely, of course. I would be particularly concerned by her comment about your levels being "not too bad" at 14--18mmols. Tell her bluntly, you feel like **** at those levels.

When are you next seeing your consultant? Could you ask about a pump then?

Thank you @azure I've got a telephone call booked with her at 4pm. I explained that I feel terribly fatigued and very thirsty in the morning so I'll reiterate that on the call.

They have CGMs available but want me to get up twice per night first...Surely a CGM would be an easier solution? Especially when I have Uni every day and two kiddies too...

I'm currently awaiting a new appointment to be sent out for the consultants clinic as my last appointment for 22nd of December was cancelled.

She gave me no clarity on the pump...I don't know if I need to raise it with the consultant? I'll ask when she calls at 4pm

 

[azure]

I agree it's a bit much to expect you to get up twice a night when you have a young family and Uni. I'd point that out. I know this sounds silly, but often HCPs trot out the usual advice without always thinking if it's suitable for the individual, so you have to point out any issues yourself.

 

[ickihun]

My last meal is between 5-6pm. I don't have a supper or any snacks after my low carb dinner.

If you are insulin resistant like me I must eat fatty protein before bed to keep my liver dump under control. I too would wake on 14s if I didn't.

 

[GrantGam]

@kimrooney89,

Good shout about taking some notes, I always forget what I meant to bring up/intended to say at my Clinic visits.

If pump therapy is something which you'd like to pursue, then you may want to have a look at the benefits of pump therapy. You can jot down all the things that will be applicable to you and reel them off over the phone/at your next appointment. Although not a pump user, it's my understanding that eligibility is both a lottery and a tick box exercise.

You've already highlighted two important reasons why you'd benefit from pump therapy: DP and a hectic schedule (balancing uni and children). Have a look through this link and the rest of the site to see if there's any other reasons why using a pump would help manage your BG better:

http://www.inputdiabetes.org.uk/alt-insulin-pumps/is-it-provided-by-the-nhs/

 

[kimrooney89]

@kimrooney89,

Good shout about taking some notes, I always forget what I meant to bring up/intended to say at my Clinic visits.

If pump therapy is something which you'd like to pursue, then you may want to have a look at the benefits of pump therapy. You can jot down all the things that will be applicable to you and reel them off over the phone/at your next appointment. Although not a pump user, it's my understanding that eligibility is both a lottery and a tick box exercise.

You've already highlighted two important reasons why you'd benefit from pump therapy: DP and a hectic schedule (balancing uni and children). Have a look through this link and the rest of the site to see if there's any other reasons why using a pump would help manage your BG better:

http://www.inputdiabetes.org.uk/alt-insulin-pumps/is-it-provided-by-the-nhs/

Thank you very much for the solid advice. I did mention the criteria I meet on the Nice guidelines for a CGM but she brushed that aside...

I'll definitely have a look at the information and jot down any boxes I think I tick so that I can bring it up at my appointment with my consultant

 

[kimrooney89]

Have you tried a) having a small amount of carbs in your evening meal? or b) eating a low carb small supper to see if that has any effect at all?

With the lack of progress from your appointment, experimenting a little would be worth a try.

I haven't tried this @azure but I think it would be worthwhile to just to see what the effect is on my BG levels

 

[catapillar]

Thank you very much for the solid advice. I did mention the criteria I meet on the Nice guidelines for a CGM but she brushed that aside...

What nice criteria are you referring to here? It's really very unusual for a cgm to be nhs funded. When it is the decision is made by the CCG, usually for people who are completely hypo unaware requiring frequent ambulance attendance for unconscious hypos, even then it's a battle to get it.

A cgm makes basal testing easier, but even then when you get a pump you would have to do waking up and finger pricking for a basal test.

A cgm isn't going to do anything to resolve dawn phenomenon, although it will tell you you when the rise starts. But you can get that info from 2 or three nights with early morning tests. That info is only really useful for either setting basal rate on a pump or waking up a blousing on mdi. It's that requirement to bolus at 3am to fight dawn phenomenon that qualifies you for a pump on the abcd criteria.

If you're concerned about problems accessing diabetic technology have a look at input. But nhs funding for cgm is unlikely. You'd be much better off focusing on why you need and qualify for a pump.

 

[kimrooney89]

What nice criteria are you referring to here? It's really very unusual for a cgm to be nhs funded. When it is the decision is made by the CCG, usually for people who are completely hypo unaware requiring frequent ambulance attendance for unconscious hypos, even then it's a battle to get it.

A cgm makes basal testing easier, but even then when you get a pump you would have to do waking up and finger pricking for a basal test.

A cgm isn't going to do anything to resolve dawn phenomenon, although it will tell you you when the rise starts. But you can get that info from 2 or three nights with early morning tests. That info is only really useful for either setting basal rate on a pump or waking up a blousing on mdi. It's that requirement to bolus at 3am to fight dawn phenomenon that qualifies you for a pump on the abcd criteria.

If you're concerned about problems accessing diabetic technology have a look at input. But nhs funding for cgm is unlikely. You'd be much better off focusing on why you need and qualify for a pump.

1.6.22 from the following guidelines
https://www.nice.org.uk/guidance/ng17/chapter/1-Recommendations#blood-glucose-management-2

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.

I'm in Scotland and my DSN advised me today that they do (at my diabetic clinic) have CGMs available for patients to use over the course of 3-7 days to monitor trends in BG levels. I'm fully aware that DP is a hormonal and a CGM wouldn't resolve this. From my perspective it makes more sense for me to have use of a CGM to see when the DP impacts and only have to get up once per night to check/inject.

I'll raise the pump therapy suggestion with my consultant whenever I get another appointment

 

[kimrooney89]

@tim2000s @azure 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...

She still adamantly suggested for me to do the 3am and 5am checks She said this would enable me to have a correction to limit the impact DP has on my BG levels...Have to call her back in 1 week to update her

 

[azure]

Good that she called you, but can she really think having to get up at 3 and/or 5am every day to do a correction is the answer? That would be exhausting.

 

[tim2000s]

@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.

 

[kimrooney89]

Good that she called you, but can she really think having to get up at 3 and/or 5am every day to do a correction is the answer? That would be exhausting.

I know, it's really difficult trying to even have a conversation with her. The replies are unbelievably generic and she doesn't seem to understand that a 3am and 5am check/correction would be totally exhausting given my studying and family circumstances...

 

[azure]

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!