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Latest HBA1C result for Type 1

Discussion in 'Ask A Question' started by MrsRamus, May 1, 2019.

  1. MrsRamus

    MrsRamus · Member

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    Hi fellow diabetics
    I’ve just had my latest hba1c result and while it’s good and much better it’s not as good as I thought it might’ve been yet I feel I don’t have any options to take with it next.

    At this point last year my hba1c was the highest it had ever been 62/7.8%, this brought me to the attention my diabetes nurse attached to my GP surgery, over the past year she gave me the kick up the *** to bring the diabetes back into the focus it needs. My only excuse is that I allowed it to drop off my life priorities and assumed the odd test and the numbers I got were acceptable, they weren’t so I’ve worked hard to change it.

    I’ve had T1 for 17y (I’m 35) but for the past 4 years have been managed on a yearly basis from my GP surgery, I’m MDI on NovoRapid & Lantus and am checking my bs 8-12 x a day, I’m pretty active, busy household, school runs everyday (walking) and a dog to walk and I carb count but it’s not always that effective for me. My latest results are now 50/6.7% so there is improvement but I wanted and had hoped for more. My GP is now saying no further action is required so I won’t get to see the nurse anymore but I really want to improve my control more to drop into the high 5s or low 6s region.

    One of the benefits of an increased focus has been more of an awareness of the things that could work for me, for example I am aware I very insulin sensitive so small increments of insulin will help but I don’t have the pens to do that, as I think even the option of .5 would be too much. I want to be able to try the pump technology to see if this helps alongside my other improvements but now the GP doesn’t want to see me and the hospital aren’t interested as I’m not ill enough or at least don’t meet the criteria for type 1s. Where do I go from here?

    Is it worth checking with the diabetes team at the hospital, are they likely to help, I went to a diabetes conference last year and the pump/cgm chat was promoting the benefits of the new tech to achieve better control and lead a healthier life for the future, I want to do that but currently feel I control the type 1 too well on mdi - but not enough to get really tight control- and I want something thats been proven to help reduce hba1c. Attempts by me through the diabetes nurse at the GP to get a cgm have proved fruitless even though it is more cost effective for them to have me on a cgm than regular bs meters, and I have asked at every opportunity but have been refused. I can’t seem to shake the feeling I’ve been lost in the hospital system because of my acceptable levels of control, for diabetes the chronic nature of this illness that surely cannot be the thinking.

    Your thoughts and advice would be appreciated thanks for reading.
     
    • Hug Hug x 1
  2. Freema

    Freema Type 2 · Expert

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    welcome here MrsRamus , there are lots of type 1 in here... so guess you´ll get some answers soon , I am type 2 so just wants to welcome you now :):):)
     
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  3. MrsRamus

    MrsRamus · Member

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    Thanks for the reply I will definitely investigate the echo pen as I feel that would really help me especially situations like now where I would need .5 of novorapid for my 10g CHO I’ve just had for dinner but I can only do 1 unit so I either don’t do it or eat more and inject 1 unit. I try to be low carb overall but is not the mainstay of my diet, usually as long as it’s healthy varied and balanced I’m happy, but I try to avoid some of the problem carbs for me such as pizza/pasta and rice. I do however like cake :) I will return to drs to try and get that follow up appt with the dsn and go from there I was aware of the change in policy so who knows, I guess I will need to be persuasive with my argument, 50 for me is higher than I would prefer and I have achieved lower in the past. I’ve recently signed up to the nhs app and there it has details of all my ‘test’ results since 2009. My lowest score was 39 and the highest being 62 but I started getting higher readings at least 3 years ago but intervention not happened until last year, will need to do some analysis of those scores and see what was going on in life at those points. I definitely have a desire to lower it so will work for that goal. Thank you x
     
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  4. Deleted Account

    Deleted Account · Guest

    Great advice from @Knikki.

    The only thing I would add is a great big "YES" to your question about checking with the hospital diabetes team.
    It is fantastic that your GP has given you extra focus but he is not a diabetes expert. The diabetes team are and should be able to provide additional advice.
    Definitely ask about a pump but be prepared to fight your corner. Different CCGs have different levels to get a pump so you need to be able to convince them a variable basal and smaller doses would help you. By the sound of it you are ready with the second argument.
    The pump requires additional effort but you have been putting that in recently so you should be able to prove to the diabetes team that you are willing to continue.

    I was reluctant to take a pump but eventually succumbed 3 years ago, Pumpy and I have a love-hate relationship but if you tried to take him (it's definitely a "him" ... probably with a mental age of about 5 or 6) away from me I would fight very hard.
     
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  5. MrsRamus

    MrsRamus · Member

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    Thanks for the words of encouragement....I am ringing them tomorrow! x
     
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  6. therower

    therower Type 1 · Well-Known Member

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    @MrsRamus . Welcome to the forum.
    I see that you’ve been advised by two of the most experienced T1’s on the forum and at 17 yrs diagnosed you bring a whole wealth of experience with you.
    Full of admiration for your control down the years and, hey I think we all find life and living it often pushes diabetes down the priority list.
    Definitely think you should contact your hospital diabetic team, these are the specialists. General Practitioners are exactly that “ General “ . Generally you are doing really well. Taking it to the next level requires specialist input.
    I sincerely hope you can find a way of getting more of the techno stuff to help you achieve your target BUT if you don’t then stick at it. You obviously have all the experience necessary to achieve anything to do with diabetes management.
    Good luck.
     
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  7. MrsRamus

    MrsRamus · Member

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    Thanks for your reply...yes you are right I need the input of a specialist here about next steps. x
     
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  8. michita

    michita Type 1 · Well-Known Member

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    Hi Mrs Ramus

    I’m someone who’s had type 1 for only 3 years and I could be wrong on this but I think to maintain good BS is extremely difficult for type 1s or nearly impossible. But there are two ways to do it : gcm/libre and/or low carb diet. There are lots of people here with gcm/libre who manage very good bs level some with non-diabetic level. That’s to me very encouraging. I manage my diabetes with low carb diet without gcm/libre and it’s working so far for me.

    I’ve been reading posts on this forum for past 3 years. There was only 1 person who didn’t have gcm/libre and ate relatively moderate carb diet and maintained excellent BS level that I would be happy with.
     
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  9. MrsRamus

    MrsRamus · Member

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    Striking that balance is key, your right there appears to be limited options and a persons reaction to those options change daily so finding something that is workable and achievable (because we all want to reach those goals) with help is a good place to start, I guess I have been finding it tricky flying solo for too long I need to return to the team.
     
  10. MeiChanski

    MeiChanski Type 1 · Well-Known Member

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    Wow, i'm quite shocked at the difference in care across the UK. I'm sorry you have to go through all of that, my HbA1c is 47 - 6.5% and my consultant is breathing down my neck, because he took the time to look at my readings and not just the HbA1c result. I would say yes check with your diabetes team at the hospital and it is out of GP's expertise, so DSN or consultant would be able to give you some advice. But as for the insulin pump therapy, you need to speak to your consultant to enquire about it, because he or she can advocate your case so I guess put forward a very very strong case. I'd assume you've done a carb counting course? It is one of the requirements for an insulin pump. Also if you have some money or your diabetes centre is doing a trial for the freestyle libre or dexcom G6, I know my old hospital use to loan out the dexcom G6 for a week to patients to try out and check out their control, but give it a try to give a better insight in your control.
     
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  11. MrsRamus

    MrsRamus · Member

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    Thanks for advice, yes I’ve done the carb counting course. X
     
  12. porl69

    porl69 Type 1 · Well-Known Member

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    Welcome to the forum MrsRamus. Cant really add to what's been said already.
    I would not hey any advice about my diabetes from my GP. I only trust my DSN and consultant.....and certain members on this forum
     
  13. MrsRamus

    MrsRamus · Member

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    Thanks for all the responses, I called the hospital today they confirmed I’ve not seen them since 2015 but that all their referrals come from the gps only so I need to get back to them to submit a request. Calling the drs today got me a telephone discussion with a gp in 2 weeks.
    To say I’m disappointed is an understatement . Why is this so difficult!
     
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  14. MeiChanski

    MeiChanski Type 1 · Well-Known Member

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    I am sorry to hear :( GP surgeries work in different ways, some offer appointments on the day and some let you book in advanced and GPs can only refer us to specialists. However I forgot to mention that your GP can prescribe the half unit novopens, it's the case of asking. then maybe when you get referred to the hospital, you can then ask about the technologies available in your CCG and the criteria.
     
  15. AmandaThompson

    AmandaThompson · Newbie

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    I think I'm one of those that seems to slip through the cracks all the time. I work, sometimes long hours, am a single parent and also a driver (on a 3yr restricted licence). My hba1c was 11% 2 years ago, then 10% last year. Due for my annual review with gp on 21st August when I'll learn my latest %. Every year they promise to get me a consultant referral but, you guessed it, I'm still waiting. I cannot afford to come too low as I end up with hypos and can't risk that at work or when driving. My practice nurse reckons they are "false" typos? I've never heard of them and have been iddm almost 20 years. Any advice?
     
  16. Diakat

    Diakat Type 1 · Moderator
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    Hi @AmandaThompson
    This is an old thread would you like your post moved?
    False hypos are when your body believes you are low but you aren’t - usually because you have been running high. Do you test when you feel low?
     
  17. MrsRamus

    MrsRamus · Member

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    My advice to you would be to go back to GP and ask for a referral to the diabetic consultants at your local hospital. I took on the good advice from above and was able to secure the echo pen and got the referral to hospital but I had to wait 2 w for the drs appt to get to ask that question then it was 6w wait till I was seen at hospital. Mine do it all online so there is opportunities for you to have appointments all across the day, sure there is something that can be worked out. I wasn’t happy with my results and like the pp have all mentioned the gps are not the specialists here you and the consultants are so keep up pressure to be seen by a diabetic consultant. My consultant seemed to get why I felt my hba1c wasn’t good enough for me but they have changed tack since I was last there (many moons ago!) but he was receptive to my suggestions and has recommended a few changes and some homework for me! Don’t give up, it’s hard but if you want see change you have to take those next steps and be persistent about it! x
     
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