First time seeing consultant/doctor as a new type 1

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digihat

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Type 1
Good Afternoon Everyone 🙂

Just wondered if anyone had any advice for any topics I might want to bring up when seeing the doctor/consultant for the 1st time after being diagnosed with type 1 after DKA in December. Got a few bits I've got written down about trying to get basal right (ongoing battle), general routine, yearly checks, going on a course (hopefully summer) recent blood tests, what happens next.

Any advice or suggestions welcome 🙂
 
You seem to have the main topics covered.

I now think of my appointments as discussing the results of blood tests, asking for anything new and declining statins.
My first topics you have in your list,. The last one is up to you if they offer (I believe statins are offered to everyone over the age of 40 with diabetes).

The middle one - anything new is up to.
Are you happy with your basal? Would you prefer something more flexible (shorter lasting like Levemir) or more robust (longer lasting like Tresiba)? Do you find our bls takes too long?
I assume you have a CGM - are you happy with it or do you find it inaccurate and want try something else?
What are your thoughts about pumping? Do you want to ask about the options available to you?

Another topic you may want to consider is diabetes management for specific activities. Do you find your BG rises or falls when exercising or eating pizza or ....? You may get some suggestions about this at your appointment.
Are you about to go on holiday? If so, it may be worth asking for a letter. These are rarely needed but a useful insurance if you get an antsy security guy and GPs charge but diabetes consultants do not.

My answer is a bit rambling - sorry to expose you to the inner workings of my brain
 
helli said:
You seem to have the main topics covered.

I now think of my appointments as discussing the results of blood tests, asking for anything new and declining statins.
My first topics you have in your list,. The last one is up to you if they offer (I believe statins are offered to everyone over the age of 40 with diabetes).

The middle one - anything new is up to.
Are you happy with your basal? Would you prefer something more flexible (shorter lasting like Levemir) or more robust (longer lasting like Tresiba)? Do you find our bls takes too long?
I assume you have a CGM - are you happy with it or do you find it inaccurate and want try something else?
What are your thoughts about pumping? Do you want to ask about the options available to you?

Another topic you may want to consider is diabetes management for specific activities. Do you find your BG rises or falls when exercising or eating pizza or ....? You may get some suggestions about this at your appointment.
Are you about to go on holiday? If so, it may be worth asking for a letter. These are rarely needed but a useful insurance if you get an antsy security guy and GPs charge but diabetes consultants do not.

My answer is a bit rambling - sorry to expose you to the inner workings of my brain
Click to expand...
Thanks for the suggestion @helli veru helpful 🙂

Yeah have got CGM libre 2 for the most part very happy it 🙂. Without it I wouldn't have been aware of some hypos as my awareness of them has mostly gone barring a little shaking which i find quite scary to be honest.

I was thinking of bringing up pumping actually just not sure if I'm too early in the journey to consider it yet.

The basal is my main challenge currently being trying to get that right for awhile been dialling it up gradually helped abit main issue is overnight rise dawn phenomenon etc
 
Without it I wouldn't have been aware of some hypos as my awareness of them has mostly gone barring a little shaking which i find quite scary to be honest.

Hi @digihat That ^^ would be the first thing I brought up. Is your consultant aware you’ve lost your hypo awareness? That’s unusual so early on. What do you have your Low alarm set at? On the Libre, mine was set at 5.6. Many people can regain hypo awareness with a sustained period of keeping above 5 or so.
 
Inka said:
Without it I wouldn't have been aware of some hypos as my awareness of them has mostly gone barring a little shaking which i find quite scary to be honest.

Hi @digihat That ^^ would be the first thing I brought up. Is your consultant aware you’ve lost your hypo awareness? That’s unusual so early on. What do you have your Low alarm set at? On the Libre, mine was set at 5.6. Many people can regain hypo awareness with a sustained period of keeping above 5 or so.
Click to expand...

Hi @Inka its the first time i will be seeing them I've only seen the nurses and dietitian so far. Its currently set at 4.5 i used to have it lower due to the amount of alerts i was getting from libre its turns they were dodgy cgms in the end had about 2/3 in a row telling me i was low constantly which dented my confidence in them i always check them regardless. Thankfully the last few have been pretty reliable so use them more now.

I dropped to 3.2 a few weeks back for example confirmed via finger prick and i didn't notice at all tiny bit of shaking nothing more. When i first came out hospital i was feeling dizzy and noticing them more but since gradually not as much. Ive had a run of lot of lows recently due to starting anti depressants which caused my levels to crash multiple times a day started reducing basal etc in the end stopped them as I could barely go for a walk without needing to intervene thankfully levels are more back to normal and the constant lows have stopped
 
I’d set it at a minimum of 5 @digihat You can get your awareness back hopefully if you run just a tad higher and avoid dropping below 5. That should hopefully restore your body’s awareness.

Apart from very obvious safety issues, if you lose your awareness, you won’t be able to drive.
 
digihat said:
Without it I wouldn't have been aware of some hypos as my awareness of them has mostly gone barring a little shaking which i find quite scary to be honest.
Click to expand...
Definitely bring up tackling this as a priority. If you lose hypo awareness you need to report this to the DVLA and will lose your driving licence if you have one, as well as it being dangerous for your own safety.
 
digihat said:
I was thinking of bringing up pumping actually just not sure if I'm too early in the journey to consider it yet.

The basal is my main challenge currently being trying to get that right for awhile been dialling it up gradually helped abit main issue is overnight rise dawn phenomenon etc
Click to expand...

Using a pump to counter dawn phenomenon was the key reason that my consultant at the time said one would be sensible. Definite recommendation from me for that.
 
@Inka @Lucyr thanks for the reminders regarding driving I'm aware of the restrictions with DVLA at the moment I don't drive and have no plans to learn but will be mindful about it 🙂
 
Rob Oldfield said:
Using a pump to counter dawn phenomenon was the key reason that my consultant at the time said one would be sensible. Definite recommendation from me for that.
Click to expand...
@Rob Oldfield thanks yeah its the main issue im trying to sort at the moment often go high single digits low double digits very rarely have a flat night had some recently but this was down to anti depressants just looking back at graphs. Will see what they say dialing up current basal constantly has helped abit but still happening. The food i eat will play a role as well of course just wary of pumping myself with more basal will probably try a different one or maybe change time of day 🙂
 
@Inka @helli @Lucyr @Rob Oldfield

Just thought i would give a quick update after seeing the consultant this morning we were chatting for about 30 minutes overall

-Happy with my current regime and my overall control time in range is about 85% at the moment this has been gradually falling used to be in mid 90s guessing this is more to do with honeymoon period tailing off. Told me to aim for at least 70% overall

- Asked me to set libre alarm at 5 and raise it when it hits that hopefully should help with hypo awareness as you all mentioned above as well

- Not too concerned about the overnight rises at the moment as they stay in high single low double at the moment keep monitoring and gradually increase basal abit more leaving longer period between increases

- Blood test they are happy with HBA1C 44 compared to 107 pre prior to DKA they have done a cpeptide to get an idea of current pancreas output and a urine sample

- Doing a course in the summer think its about 4 days. I said I'm pretty much winging it at the moment course should help sort that out

-Happy with my pre bolus timing off between 20-30 minutes for novarapid he said its not as quick as other bolus which I was aware off

- Will see consultant again in about 6 months as they are happy with my current control would be 3 if it was worse.

- Didn't bring up about insulin pumps for the moment will see how things pan out in the future

- Confirmed it's definitely type 1 due to presentation positive Znt8 DkA keep panicking its type 2 for some reason...

- Confirmed the yearly checks eyes, first urine, feet. Said I will see them once a year likely once fully under control /established

- Still seeing DSN for the moment in a few weeks time then will review that

Once again thanks for everyone's input
 
Sounds like you are doing brilliantly!
As regards overnight levels, mine vary enormously and I rarely get anywhere near a straight line and I have to regularly tweak my evening basal dose to try to keep out of the red. Just wanted to let you know that whilst people on pumps may achieve relatively stable overnight levels, MDI can be tricky and some people's bodies are less stable than others, so stable overnight levels are pie in the sky for some of us.
 
Well done that sounds a great appointment
 
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