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Type 1 Newly Diagnosed.. Help needed!

Discussion in 'Ask A Question' started by Newbie89, Oct 11, 2021.

  1. Newbie89

    Newbie89 · Newbie

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    Hi all,

    I've recently been diagnosed with T1 but haven't been given a great deal of information if I'm honest. My surgery are refusing to see me face to face still (Covid) and all I want to do is have a conversation with someone about things, as at the moment there's a lot of guess work and self research.

    I have a DSN RV later on this month, but I've no idea what it is or what it will entail. It's over the Phone with the GP's surgery. The appointment on the NHS app states DSN RV GP BOOK ONLY. I gather its a Diabetes nurse? but then again it says GP book only so am getting confused.

    I've been given a testing machine and been put onto Novorapid and Levemir and all seems to be going ok but seems to go high over night. Rest of the time seems to be within range. Any info on these appointments/ how to lower levels at night would be greatly appreciated.

    I do apologise if this seems a little simple, I'm just so overwhelmed at the moment at thought people with experience may be able to assist :)
     
  2. ert

    ert Type 1 · Well-Known Member

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    Welcome. Type 1 is a lot to process. It sounds like you've hit the ground running.
    As you are type 1, you should be looked after by a specilaist and diabetes nurse team at the hospital. Ask for their phone numbers and email and try to organise some phone calls, daily if necessary. You should record a diary of your blood sugars waking, bedtime and before your meals (5 times). Also list your foods, carbohydrates and insulin doses and times. Email them the information and get some feedback. (GP's look after type 2's.)

    If you like courses, this is a good one: https://www.bertieonline.org.uk/

    Re: high sugars overnight - How high exactly? Are you splitting your Levemir dose? I'm on Levemir. You may have to test your basal in the first instance to see if your Levemir dose is correct. I do this by eating a low carb dinner and recording my bedtime blood sugar and waking blood sugar. If these are the same, then my nighttime dose is correct.
     
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    #2 ert, Oct 11, 2021 at 9:46 PM
    Last edited: Oct 11, 2021
  3. Daibell

    Daibell LADA · Master

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    Hi. Some surgeries manage T1s. I'm on Basal/Bolus and my super DN manages me. You need shortly to be told how to do carb-counting for your Bolus dose. This is relatively easy but the NHS sometimes takes too long to give advice on this. Ask whoever you find to look after you. My surgery DN explained it to me when she started my insulin. Carb-counting gives better control and lowers the risk of hypos.
     
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  4. In Response

    In Response Type 1 · Well-Known Member

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    This is not always the case. Some GP surgeries have very good DSNs who specialise in Type 1 and some CCGs have DSNs who manage an area by visiting GP surgeries.

    Advising upon this kind of thing is difficult because it varies so much. What is normal in one area is considered weird in another. Without knowing the norm in the OP's area we can only advise what is normal in our area but we should emphasize how this varies.

    Please take care with your advice and be aware that just because it's the way it is for you, that you have certain tests, that you see certain people at certain locations, ... does not mean it is the case for everyone.
     
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  5. ert

    ert Type 1 · Well-Known Member

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    You are entitled to specialist care as a type 1 diabetic. You can be referred on the NHS. My GP and nurse are diabetes trained but know very little about the day to day management of type 1 compared to the hospital team. A GP was on my DAFNE course and had type 1 diabetes for 35 years and he said he learned a lot.
     
    #5 ert, Oct 12, 2021 at 9:19 AM
    Last edited: Oct 12, 2021
  6. In Response

    In Response Type 1 · Well-Known Member

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    I am not disagreeing with you. My point is that you can get “specialist care” at a GP surgery with, for example, a visiting DSN.
    The set up with a local hospital is not the only option.
     
  7. ert

    ert Type 1 · Well-Known Member

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    You still have the option to travel to see a specialist if you live in a remote area. All my appointments are on Zoom anyhow at the moment. You can phone and email the specialist team also. Why pass up this level of care if you are entitled to it? GP's are overwhelmed at present and cancelling diabetic reviews. I haven't had one with my GP for two years. But my specialist team contact me every 6 months and encourage me to contact them if I need to any other time.
     
    #7 ert, Oct 12, 2021 at 9:52 AM
    Last edited: Oct 12, 2021
  8. JMK1954

    JMK1954 Type 1 · Well-Known Member

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    You are fortunate that the staff in your hospital team are so efficient and pro-active, ert. I have my consultant's email address, which is very helpful, but not all hospitals are like yours.
     
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  9. In Response

    In Response Type 1 · Well-Known Member

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    You are missing my point.
    Although the specialist care is held in the GP surgery, it is not necessarily provided by the GP staff.
    There are travelling specialist in some areas who visit GP surgery.
    Plus, most areas require a GP referral. If the GP is not forthcoming with this referral, the level of care may be difficult to get.
    Not every CCG manages diabetes as your has.
     
  10. EllieM

    EllieM Type 1 · Moderator
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    Welcome to the forums @Newbie89

    Those are all very good questions, not simple at all (and no questions are too simple for these forums anyway, as we are all here to help). You sound like you have made an excellent start.

    Do you have a contact that you can email or talk to about adjusting your insulin doses? (I suspect that @ert may be right that you need to adjust your night time basal (levemir) but we are not doctors here and can't give specific dosing advice.) I would hope that a new insulin user would be given a contact so that they can ask questions at any time, but maybe I'm being naive. (And as I was diagnosed over 50 years ago and have been out of the UK for 20 years I have no personal experience with the current NHS system for newly diagnosed T1s)

    And as for the question as to whether Newbie89's diabetic care will be handled by her GP or her hospital or both, can I gently remind you all that this thread is to help a new T1 with her diabetic care, not just to have an argument over who will supply it.
     
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  11. Hertfordshiremum

    Hertfordshiremum · Well-Known Member

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    Hi I was diagnosed 3.5 years ago, the help was a disaster and I ended up changing GP and eventually the local hospital reported them for lack of care. Long story short I ended up hospitalised with DKA, it could have been avoided. Different areas sound like they follow different procedures so I would give the GP a call and ask who you can call prior to your phone appointment. In the meantime a walk after dinner or resistance band exercises might help curb any rise later on in the evening. Have you considered a Libre? I think you can get one on free trial from Abbots, might be useful to see how you are reacting to different food and exercise, hot/cold weather, illness. All things that effect your blood sugars as a type 1. Hang in there, you will get used to it all. Hope your phone appointment is sooner rather than later.
     
  12. Jaylee

    Jaylee Type 1 · Moderator
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    Hello,

    Welcome to the forum.

    Will this be the first time you would have spoken with a DSN since diagnosis?
    It's appreciated these acronyms can be confusing what I have ascertained is the RV simply means "rendez-vous," within this context.
    Which suffice to say sounds like it could just be an introductory appointment with the nurse over the phone, touching base since your recent diagnosis.
    My lot have been ringing me over the phone due to the recent covid issue. Quite often catching me on a backfoot at work.

    I hope this may possibly belay any anxiety you may have.

    & best wishes for the appointment.
     
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