Does anyone else struggle with checking their BG consistently?

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scottwatters

scottwatters

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Hi folks, some of you may have seen me before. Was diagnosed diabetic around this time last year, and I'm currently waiting on blood test results coming back to find out if I have MODY or not.

One thing I've noticed over the last year, is that I really struggle with taking my BG readings consistently. I think I just have this (wrongful) mentality of "ugh, I can't be bothered!" which means I don't really know where I'm at daily in terms of my BG. I know when it's getting low, and I definitely know when it's a hypo (horrible feeling!) but other than that I kind of succumb to it and just let it do its own thing.

I'm fine at consistently taking my gliclazide every day with dinner, but I just can't find it in me to consistently finger prick 4 times a day. It honestly feels like a chore sometimes, which is stupid because it's such a small thing to do.

Has anyone struggled like this before, and what did you do to overcome it? My current mentality isn't helping me, and it definitely isn't helping the doctors. I tried the free trial for the Freestyle Libre monitors, which I loved! It was so much more convenient, but as I'm not T1 or insulin-dependent (yet), I'm not eligible to get it on the NHS, and can't fathom spending £100 a month purely for that convenience :rofl:
 
Hi, I’m waiting on MODY test too… it’s been 11 weeks so far. Was told maximum of 8. How long have your taken so far if you don’t mind me asking ?
 
EmmaL76 said:
Hi, I’m waiting on MODY test too… it’s been 11 weeks so far. Was told maximum of 8. How long have your taken so far if you don’t mind me asking ?
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Hi Emma, I had my blood taken 9 weeks ago tomorrow. Unfortunately they never gave me a timeframe, so I'm playing the waiting game on seeing that letter come through the post haha!

I found a MODY group on Facebook and asked in there about how long people's results took, and there was a woman from Australia who had her results sent to Exeter and had them back in 6 weeks, and that was fairly recent!
 
I’m sure mine have gone to Exeter too. Probably sat in the back of a freezer somewhere gathering dust lol. I won’t get a letter, my results go to my consultant and then I have to rely on him contacting me. Personally I don’t think it will be MODY although I do have some of the signs. Let me know when you get yours please, if you’re come before mine then somethings amiss lol
 
EmmaL76 said:
I’m sure mine have gone to Exeter too. Probably sat in the back of a freezer somewhere gathering dust lol. I won’t get a letter, my results go to my consultant and then I have to rely on him contacting me. Personally I don’t think it will be MODY although I do have some of the signs. Let me know when you get yours please, if you’re come before mine then somethings amiss lol
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Honestly, I've been tempted to phone up the hospital and see if they're back yet but don't want to seem too impatient! I'm not sure what to expect at this point, it'll just be nice to have an actual concrete diagnosis of what type I am. I'll let you know when my results come through though 🙂
 
Tried that, I was just told my consultant will be in touch when they are complete. I was tested for the whole panel of MODY’s so I suspect that takes longer. I’ve been undiagnosed for nearly 2 years. It’s tough. Good luck getting your answers 🙂
 
Thanks, you too! I'm the same, being tested for the whole panel. After reading through some of the MODY sub-types, I really won't be surprised if I am MODY, but I have a bad habit of reading a description and going "yup, sure, that's me!" :rofl:

Thing is, I'm still not showing any diabetes symptoms, so it's a bit strange for me having all this chatter around what type I actually am. They ruled out T1 when they did an antibody test last year, then my consultant believes that I'll be insulin-dependent down the line, so got me tested for MODY since I've got 4 generations of diabetes in the family.
 
As far as the finger pricking is concerned then you perhaps need to think about when you are testing and why, is it giving you useful information. Obviously there will be some tests which are necessary, before driving, if you feel unwell but the others are thay telling you something that you are able to react to or are you just collecting evidence for your diabetic team to help with a diagnosis so along side a food diary that is something that would be useful.
I hope you get some clarification soon.
 
The time for getting results does seem quite a long time 3 weeks to 3 months depending on what method is used since the actual time taken to perform the procedure is not all that long but the analysis of the data is probably the bit that takes a while. The cost to the NHS is £650 so you can see why they are reluctant to do it unless there is good cause.
Details of the testing here if you are interested. https://www.diabetesgenes.org/tests-for-diabetes-subtypes/a-new-test-for-all-mody-genes/
 
Leadinglights said:
As far as the finger pricking is concerned then you perhaps need to think about when you are testing and why, is it giving you useful information. Obviously there will be some tests which are necessary, before driving, if you feel unwell but the others are thay telling you something that you are able to react to or are you just collecting evidence for your diabetic team to help with a diagnosis so along side a food diary that is something that would be useful.
I hope you get some clarification soon.
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Thanks! Right now I was told to do it 4 times a day before meals and before bed, just to keep a track of where my levels are at, but again it's just something I could never stick to! I was never asked to keep a full food diary, only what I had at dinner. When I used the Freestyle Libre, it was good in that I could see how the foods I ate affected my levels on a graph, rather than just the meter.

I do want to get better at managing my levels, so I want to start maintaining a food diary, and tracking my BG levels somewhere. (As someone who works in Data, you'd think that I'd be all over something like this...!)

Thanks for the MODY link. I'll check it out 🙂
 
scottwatters said:
Thanks, you too! I'm the same, being tested for the whole panel. After reading through some of the MODY sub-types, I really won't be surprised if I am MODY, but I have a bad habit of reading a description and going "yup, sure, that's me!" :rofl:

Thing is, I'm still not showing any diabetes symptoms, so it's a bit strange for me having all this chatter around what type I actually am. They ruled out T1 when they did an antibody test last year, then my consultant believes that I'll be insulin-dependent down the line, so got me tested for MODY since I've got 4 generations of diabetes in the family.
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I didn’t have any symptoms. Mine was picked up randomly age 43 after 20 years of on/off BG issues. Hba1c was 55, although I had a slight antibody positive, I was still told this was inconclusive. Have you had cpeptides done? I was also told that someone like me. (Whatever that means) will usually always end up on insulin. I do currently use small amounts. Type 2 meds did nothing for me
 
EmmaL76 said:
I didn’t have any symptoms. Mine was picked up randomly age 43 after 20 years of on/off BG issues. Hba1c was 55, although I had a slight antibody positive, I was still told this was inconclusive. Have you had cpeptides done? I was also told that someone like me. (Whatever that means) will usually always end up on insulin. I do currently use small amounts. Type 2 meds did nothing for me
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I'm actually not sure re: cpeptides. Everything kind of happened so fast for me so I lost track of what bloods were taken for what. I was basically fast tracked at the hospital and red-flagged as I showed no symptoms, I'm young, and have a healthy weight.

When I was diagnosed, I was put on 40mg gliclazide, however that kept bringing my levels down way too quick, and was having way too many hypos, so my dose was cut to 20mg which seems to be holding for now. I was told that I don't need insulin now, however they strongly suspect I'll need it down the line.
 
Can I ask was your hba1c was on diagnosis? Also it might be worth asking for your antibody results. When I was tested, I was told negative, although my antigad 65 was 55, norm is under 5. The hospital said that was borderline so showed as a negative. I would suspect it’s very unlikely you are a type 2. Not unheard of but unlikely. Reassuringly a consultant once said to me, there are type 1’s and there are type 2’s and a whole grey area in between that nobody fully understands yet. Brilliant 🙄
 
@EmmaL76 I'm not sure if it was my hba1c they were talking about, but I remember the nurse saying something like "it should be 6~ but yours is at 10.5~". I've got a GP appointment tomorrow for my hba1c so I should have something to compare it against.

I didn't consider asking about my antibody results. I just took the result at face value, but it could be valuable to actually know the numbers.

"there are type 1’s and there are type 2’s and a whole grey area in between that nobody fully understands yet" - yup, sounds about right! 🙄

@Inka That's how I'm trying to look at it now. Really trying to change my mindset on it. Like I mentioned to leadinglights earlier, you'd think that with my working in Data I'd be all over stuff like this! Maybe I just need to make it a mini project of mine to map my results and display them in all sorts of charts! :rofl:
 
It sounds as if that was your HbA1C result given in % rather than the current units of mmol/mol that should be being used so It would most likely have been 10.5%, the threshold for a diabetes diagnosis in % is 6.5% I believe which equates to 48mmol/mol.
These are different units to the reading you get from a finger prick test with a home monitor which are mmol/l as they measure something slightly different.
It is a good idea to know your result as it gives a starting point to compare any changes to.
 
It’s so confusing when they use different ways to measure. I remember getting my first hba1c as 7.2. Then testing my sugars at home and thinking why is it in the 20’s when they said I was 7.2? Took way longer than it should of done to get my head around that little conundrum :D
 
Hope you have found it helpful to share your frustrations and get stuff off your chest @scottwatters

Hope you get some confirmatory results about your diabetes classification soon 🙂
 
@Leadinglights @EmmaL76 I completely forgot that I received a results sheet through the mail a couple of weeks back (when they were discussing my blood pressure) which had all my hba1c results on it! In May 2021 it was 54, then in June 2021 it was 50. My most recent, April 2022, it was 58. So it'll be interesting to see what it is this time round.

@everydayupsanddowns Thanks! It definitely does. I've had my ups and downs since my diagnosis but it definitely helps sharing. Just wish I did it more often! :D
 
Very similar to my results I was 51 then 55. They say that MODY tends to hover around that ball park. So it could be a distinct possibility for you.

It does help sharing, I have a habit of over sharing sometimes but I’ve tried to reign that in a bit lol
 
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