1. Get the Diabetes Forum App for your phone - available on iOS and Android.
    Dismiss Notice
  2. Guest, we'd love to know what you think about the forum! Take the Diabetes Forum Survey 2021 »
    Dismiss Notice
  3. Diabetes Forum should not be used in an emergency and does not replace your healthcare professional relationship. Posts can be seen by the public.
    Dismiss Notice
  4. Guest, stay home, stay safe, save the NHS. Stay up to date with information about keeping yourself and people around you safe here and GOV.UK: Coronavirus (COVID-19). Think you have symptoms? NHS 111 service is available here.
    Dismiss Notice
Dismiss Notice
Find support, ask questions and share your experiences. Join the community »

Anyone get a hard time about low HbA1C?

Discussion in 'Diabetes Soapbox - Have Your Say' started by Winterwatch, Oct 6, 2018.

  1. Winterwatch

    Winterwatch Type 1 · Well-Known Member

    Messages:
    50
    Likes Received:
    26
    Trophy Points:
    38
    I am wondering whether anyone else gets a hard time from their hospital for their A1c being "too low".

    By way of background, my stats since diagnosis in February 2017 are:

    February 2017 - 10.5%
    April 2017 - 6.7%
    August 2017 - 4.5%
    March 2018 - 4.5%
    October 2018 - 4.5%

    The only result that my hospital have been happy with was April 2017 (which was elevated because it was so soon after diagnosis). For the three most recent visits, I've essentially been told to loosen my control because the numbers are too low. Given that A1c is an average, I don't know how they can make the assumption that I must be having frequent hypos - in fact, I am in range 98-99% of the time (3.6 - 6.7 mmol/mol). Not only do a get a hard time about it at the appointment, I then get a letter written about it to my GP each time.

    Just one example - they say I should be between 6.5 and 8 mmols before bed. At best this seems overly cautious (especially if you know you tend to rise a bit over night). At worst, it seems irresponsible. I wonder whether this kind of advice is aimed at covering their own liability. I understand that not everyone tries (or is able) to achieve non-diabetic levels and that the standard guidelines may be appropriate in most cases. But if someone wants to do better than that, I don't see why they should not support that.

    It's highly frustrating to put in so much work on a daily basis to have it disregarded. Saying that, I haven't been able to see the consultant since my diagnosis in February so perhaps he would take a different view. I am intending to take a print out of my daily stats next time to see if that alleviates their concerns.

    Anyone else get this? Do you just continue to do your own thing and put up with the visits?

     
    • Like Like x 1
    • Winner Winner x 1
    • Hug Hug x 1
  2. Jaylee

    Jaylee Type 1 · Moderator
    Staff Member

    Messages:
    15,278
    Likes Received:
    11,482
    Trophy Points:
    298
    Hi @Winterwatch ,

    Yep, I've been there... They assume by "the book" you are having too many hypos to acieve the A1c.. Felt like I couldn't win.
    I am hypo aware, even whilst sleeping. Had no more than usual & never in my time needed intervention (even as a child.) with lows...

    Hats off for your result. I've not driven mine al low as yours.. But still below the recomended "benchmark."
     
    • Like Like x 2
  3. Winterwatch

    Winterwatch Type 1 · Well-Known Member

    Messages:
    50
    Likes Received:
    26
    Trophy Points:
    38
    Hi Jaylee, thanks for the reply. Out of interest, what do you (or others if you know) tend to consider to be a hypo? I think my hospital's main concern is that I lose hypo awareness. As it is, I usually get symptoms at around 3.6, which probably coincides with that being the low alert setting on my CGM. I would normally also correct a high 3 (i.e. 3.8/3.9) as and when I see it, but wouldn't consider that to be a hypo or a negative result.
     
    • Like Like x 1
  4. ickihun

    ickihun Type 2 · Master

    Messages:
    13,562
    Likes Received:
    18,435
    Trophy Points:
    298
    I had my insulin changed by specialist. Hence weight loss stopped. :(
     
    • Like Like x 1
  5. Jaylee

    Jaylee Type 1 · Moderator
    Staff Member

    Messages:
    15,278
    Likes Received:
    11,482
    Trophy Points:
    298
    As a driver. Legally. 5 to drive.

    But, I start getting a heads up with my eyes at the mid/low 4s. (Dancing lights, a shimmer on the vision & colour blindness. The feeling I've walked into a room & forgotten why.) Classic syptoms, going sub 3.5.? I tend not to panic if no bolus on board.. 5g of carb nudges it up for me.. (Unless I've been asleep. Then I go insane.)
    With bolus, (for me.) anything could possibly happen driving BG down fast.
    As a child? There were no test meters. Lol, the advice at the time was "if you feel funny? Tell mum."

    At the end of the day. Most HCPs haven't "bought the tee shirt."
     
    • Like Like x 1
  6. newjourney

    newjourney Type 1 · Active Member

    Messages:
    26
    Likes Received:
    82
    Trophy Points:
    53
    Yes, all the time, only been diagnosed for nearly three years and have been in the low 5's for the last two years. My first consultant was very judgemental and never listened. The second one is younger and is more supportive but he wants me to start having higher numbers. My DSN was horrific and so glad she has moved on. I am super sensitive to going low and high, and happier in the middle. At this stage I am not after any support, well given up wanting any, just want my results and enough test strips, (they are trying to limit them).
    I have gone in with all the information to alleviate their fears and they still ask if I feel hypos. Sending you loads of support and hope they start supporting you, well done for doing so well.
     
    • Like Like x 1
  7. Scott-C

    Scott-C Type 1 · Well-Known Member

    Messages:
    2,475
    Likes Received:
    2,726
    Trophy Points:
    158
    You having cgm is going to be answer to this. Many docs are still woefully behind the times - they look at a1c, reckon it's too low, so you then get a lot of grief about it.

    I've been running libre with a blucon transmitter to xdrip+ for about a year now. A1c has dropped from about 40 to 28.

    Docs said you must be hypoing lots.So I then say to them you've got a number and you're drawing inadequate conclusions from that, and then I show them the AGP graph, which gives a much fuller picture.

    The picture shows that the decent a1c isn't because I'm hypoing all the time, it's because I'm using cgm in a useful way to avoid going above ten.

    Docs still need education in this. We have a huge amount of experience with cgm - I've been wired up for about 2 yrs with it. They've read a bit about it in books, so they're really not going to be as clued up as we are.

    It's frustrating at the moment, but take a bit of time to explain to them what an AGP graph is, and how to drill down into the daily graphs for a deeper check. My docs have been really into it (although, having done this for 3 decades, I don't give a flying f**k what they think!).
     
    • Like Like x 1
    • Agree Agree x 1
  8. kitedoc

    kitedoc Type 1 · Well-Known Member

    Messages:
    4,788
    Likes Received:
    3,337
    Trophy Points:
    198
    Hi @Winterwatch, This is my attempt to put some information up to show the bind that some health professional might find themselves in. It is only my thoughts and not to be taken as professional or medical opinion. It is not intended as an apologist statement regarding HCPs but information which might help us understand why sometimes HCPs are reluctant to 'move with the times', although that does not in my book translate to excusing not keeping up with new advances.
    I have seen some of the research on HBA1Cs and the observation that harm/worse outcomes over time occur at high and low HBA1Cs. E.g.bmjopen.bmj.com - BMJ Open: Glycated haemoglobin A1C as risk factor of cardiovascular and all cause mortality in diabetic and non-diabetic populations:a systematic review and meta-analysis , Cavero-Redondo et al Vol7 , Issue 7, 2017 in which all causes of death outcomes were worse for HBA1C >8% (64)mmol/mol in diabetics , > 6% (42 mmol/mol) in non-diabetics with the highest all cause rate being in diabetics with HBA1C > 9 % (75mmol/mol). But all-causes mortality was also high in diabetics with HBA1C < 6 % (42 mmol/mol) and non-diabetics < 5% (31 mmol/mol). This is in adults where the majority of diabetics have type 2 diabetes and thus the actual length of time they have been diabetic before diagnosis will vary. Also the studies used ranged from publication in 1979 to 2013.
    A study referred to as the Diabetes Control and Complications Trial (1982 to 1993), showed that intensive intensive insulin therapy in type 1 diabetics of 6.5 years compared to conventional therapy for > 99% of a study population of 1441 people aged 13 to 39 and average HBA1C of 7% (53 mmol/mol) vs 9% (75 mmol/mol) resulted in a 35 to 76% reduction in kidney, nerve and eye complications.
    A follow up study, 1994 to 2011 reported in Diabetes Care 2014 Jan (37) 1- Nathan,D and DCCT group - The Diabetes Control and Complications Trial/Epidemiology of Diabetes Interventions and ComplicationsStudy at 30 years: Overview reports that even though the HBA1Cs of both groups trend towards being similar similar, the intensive treatment group continued to have a lower incidence of microvascular (kidney, eye, nerve) complications. Also for fatal and non-fatal heart attacks and strokes there had been a 58% reduction in the intensive therapy vs conventional therapy groups at a average of 18 years since the beginning in 1982. This continuation of benefit despite easing off on strict control was named 'metabolic memory'.
    Also hypos were more common in the intensive control group but evaluation did not find any brain injury problems in this group.
    A report by the Australian Diabetes Society in 1995 (Diabetes Control and Complications Trial: Implications for Children and Adolescents) noted the inclusion of teenagers in the DCCT study and made the comment that brain development after birth was maximal around age 3 to 7 and thus hypoglycaemia may cause more damage to the brain then than at age 13 and above .
    Why talk about this?
    You have the first study saying keep HBA1Cs between 6 % (42 mmol/mol) and 8%(64 mmol/mol) otherwise death is more common. Another showing that intensive control in T1Ds for at least for the first 6 1/2 years (and my doctor quotes 10 years) is crucial to achieving reduced chances of developing micro-vascular complications even though continued tight control did not necessarily occur beyond the 6 1/2 or so years.
    Now how many of us have seen the worst effects of hypos? Some HCPs have and I am told they are not pretty (anymore than diabetic ketoacidosis is). I recall waiting in clinic one day and seeing a teenager I had spoken with often in the past being wheeled in for her appointment, unable to speak now coherently, unable to keep attention on anything and having great difficulty walking or holding a cup. Apparently she had taken a deliberate overdose of insulin. Of course the worst cases are likely to stick in one's memory and not the fact that most people deal with their hypos and never need hospital or ambulance assistance.
    Yes, whilst the above studies may have involved some use of insulin pumps and early CGM there is no distinction recorded (that I could find) into how those using such technology fared hypo-wise compared to the MDI and conventional insulin therapy groups.
    One positive effect of the DCCT and subsequent studies has been initiatives like the Australia Government providing subsidies for cost of CGM consumables to all T1Ds under 21 years of age. (the rest of us have to pay usual price, even pregnant diabetics on pumps)!!
    So please keep in mind that not all of us are on/can afford CGM or have been 'awarded' insulin pumps. Our HCPs are sometimes very conservative and may need assurances that we can be relied upon, and have the relevant safeguards to prevent problems with our attempts to improve our HBA1C results. The reason for excessive deaths below HBA1C of 42 mmol/l in diabetics is still not explained.
     
    • Like Like x 2
    #8 kitedoc, Oct 7, 2018 at 4:06 AM
    Last edited: Oct 7, 2018
  9. michita

    michita Type 1 · Well-Known Member

    Messages:
    466
    Likes Received:
    302
    Trophy Points:
    123
    I think this is common. I share your frustration... It's almost like they expect type 1s to have bad control.... I've often felt they suspect I'm lying when I say I don't have bad hypos.

    I can't afford libre or don't think I need one for daily management but my plan is to get one twice yearly before consultant appointment just so that I can prove that I'm not having hypos.

    With my driving license renewal coming up, I don't want to take any chance. It's also difficult because I get different consultant each time.

    I keep non-diabetic bs eating low carb - Hba1c 5.3%
     
    • Like Like x 1
  10. lollyann1

    lollyann1 Type 1 · Well-Known Member

    Messages:
    141
    Likes Received:
    60
    Trophy Points:
    68


    The year before last I tried really hard to get my Hba1c down and the Specialist Diabetic GP told me I was way too low - could not win then but a different Doctor saw me this year and told me my result of 6.1 was very good!
     
    • Winner Winner x 1
  11. Diakat

    Diakat Type 1 · Expert
    Retired Moderator

    Messages:
    5,600
    Likes Received:
    4,170
    Trophy Points:
    198
    My last value was 34 and the nurse did talk to me about hypo awareness and look questioningly at me. I showed her my values and explained I feel "low" in the 4s and documented my response to exercise which showed that if I have dropped to 4s after exercise it can take up to an hour for me to get back to the 5s - even when shoving in carbs. She accepts my explanation and has not proceeded to lecturing yet.
     
    • Winner Winner x 1
  • Meet the Community

    Find support, connect with others, ask questions and share your experiences with people with diabetes, their carers and family.

    Did you know: 7 out of 10 people improve their understanding of diabetes within 6 months of being a Diabetes Forum member. Get the Diabetes Forum App and stay connected on iOS and Android

    Grab the app!
  • Tweet with us

  • Like us on Facebook