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DSN "Advice" after low HbA1c results

ashleyp

Active Member
Messages
38
Location
Colchester. Essex
Type of diabetes
Type 1
Treatment type
Insulin
Afternoon all,

I had a query regarding some recent advice I got from a new DSN. I haven't been seeing any diabetic specialists regularly for around 6 years as I was discharged from the service about 1 year after my diagnosis as I self taught how to manage my diabetes pretty strictly and they felt it was no longer necessary for me to continue attending meetings.

I still have my yearly HbA1c check up appointments where I get my HbA1c, BP, feet checked, weight etc and also my eyes screened once a year, never had any problems. At my most recent appointment to discuss the results of my HbA1c, I was offered the chance to join the Libre gang. Obviously I accepted and was referred to an initial consultation with a new DSN.

She criticised my HbA1c, it was 37, and said it was dangerously low. I keep extremely tight control but did admit by doing so I am more prone to running slightly lower than I would like at points. I train 5 days a week at the gym extremely intensely (both bodybuilding training and post workout cardio) and have found this to be an asset in maintaining good control.

This is where I became confused/worried. The DSN said it was essential that my BG levels were in-between 7 and 15mmol every time before I begin in the gym. To me, this is mind boggling. They even mentioned that if it was 15mmol I should check for ketones...Check for ketones? After intentionally making myself that high? It really made no sense whatsoever.

If anyone can shed some light on this subject I would love to know more. I am lucky in the sense that my training has no real effect on my BG readings, other than making them drop slightly towards the end of my post workout cardio. For example, I normally start training at around 5-6mmol and before my post workout meal I could be around 4mmol. I would feel absolutely terrible if I was 15mmol and certainly would not want to be weight training. Im quite sure I read you aren't supposed to anyway if you are above 13mmol.

Please let me know your thoughts!
 
Hi @ashleyp

The danger with advice is that it's not tailored specific based on your individual requirements, it's 'generalised' information.

As you can probably gather it's based on ensuring your hypo awareness stays optimised and you don't lose it, however this advice doesn't take into account how well controlled you are, so maintaining stable levels and not having frequent lows.

I could never exercise over 12, it's pretty pointless over this as running high makes me feel slow and dreadful, I aim to start intensive exercise with no insulin on board and above 7.

If you feel comfortable with how your managing this then why change, I have a saying if it ain't broke..
 
ashleyp said:
The DSN said it was essential that my BG levels were in-between 7 and 15mmol every time before I begin in the gym.
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That only makes sense when you go hypo during or after gym regularly. It's a rule of thumb to advise to start on the higher side (although 15 sounds pretty ridiculous unless someone needs an ambulance every time they work out). Rules of thumb are there as starting points, not the law.
ashleyp said:
She criticised my HbA1c, it was 37, and said it was dangerously low.
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My last one was 36, and after some questioning my internist was happy with that and put in my notes that the low hba1c was acceptable because I keep very tight control most of the time, never had a hypo requiring assistance and understand very well how my diabetes works (at the moment).

I think most of it has to do with the knowledge of the consultant. If they have learned low hba1c=hypo's galore and haven't much experience with reading CGM/Libre data I can see where they're coming from.
 
Here we go again, advice from a DSN who as juicy says, is simply dishing out the standard advice albeit I have never heard a single professional say make sure you're between 7 and 15, 15???? I am a big exerciser (mainly running so not as energetic as body building). I was told the preference would be to be above 6 when starting to exercise but I am hardly ever above 6 unless I have eaten and I prefer to exercise on an empty stomach. We are all so very different just as people who are not diabetics are different. Therefore we test and experiment, I do not know of any type 1 (or type 2) who throws caution to the wind when it comes to their glucose levels and the affects of exercise, why would we??? We are exercising to keep fit and healthy, why would we risk that by allowing our sugar levels to be all over the place! It really annoys me, what we want from our DSN is for them to listen to our rigid routines and to accept that we are responsible adults who have taken control of our health. As for the h1ac level, my last one was 39 and the Doc pulled a face but simply said 'wow'. They are clearly not used to tighter control so seek to view it as an 'issue'. She doesn't know that 37 is 'dangerously low' at all, she has no idea what your levels are throughout the day unless you tell her and in any event NONE of us know what they might be at all other times outside of a finger prick because they won't give us a CGM to check. Sorry if this sounds like a rant @ashleyp, stick to your guns, ask her what she is going to do then about your 'dangerously low' h1ac. I am sick to death of being treated like absolutely every other type 1 rather than an individual, if my DSN even tried that line on me she/he would get a mouthful. She is scaremongering plain and simple, YOU know your body, yes of course you have to be careful and check & test regularly but this arbitrary number (15????) is ridiculous. x
 
I have also been warned about my low hba1c - last checkup it was 4.2% (22.4 according to the converter on this site) !! I don't work out but I am active and walk alot. My endo thinks it's too low, but I am sure Dr. Bernstein (Type1grit) would think I am doing well, so I have every intention of continuing my control because I feel great and have no complications. This is the same endo who told me to follow a high carb diet when I was diagnosed.
 
I’m a med free T2 with my HbA1c at 27. They simply don’t believe I have diabetes, it’s impossible for them to consider that the work I do is what gives me that number, I have the same conversation with every single doc that calls me after every test with the same low result when they ask “who told you you have diabetes”?

You did mate, you did.
 
I had a similar conversation with a GP that I hadn’t seen before - we were discussing statins and cholesterol which I was refusing he then offered to do a qrisk assessment but was surprised when I said that, being diabetic, my risk would automatically go up by 10 and told me I wasn’t diabetic. He had to go back over 6 years to find a diabetic hba1c and, when I pointed out the rise in my hba1c caused by the statins I was prescribed, he put ‘statin intolerant’ on my notes.
 
Sounds like you are doing an excellent job. Please don’t listen to this DSN. It’s good to hear how well you manage. You should share us your exercise regime
 
JAT1 said:
I have also been warned about my low hba1c - last checkup it was 4.2%
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Is it right that your average bg must be around 4 when your hba1c is 4.2%? You must be staying below 4.5 almost all of the time to get such an average without going below 3.5 very often. Sounds complicated to avoid hypo's when staying that low all of the time.
Is this low (low end of 'normal' I think) something you aim for?
 
Thank you all for your comments, glad to see we are all in the same boat here. This was one of the main reasons why I pressed to become discharged in the first place, I got frustrated with nurses trying to show me a textbook printed in 1964 that told me what I should be eating and in what moderation. I find a lot of the advice to be extremely outdated and as mentioned very general.

Due to my low HbA1c I was referred to visit a 1 day DAFNE refresher (I did the full week-long course not long after I was diagnosed 7 years ago) and I just know I'm going to most likely experience a day of painful cookie-cutter textbook advice. Im hoping that in the 6 years it has been updated somewhat and I can learn something new.
 
Actually my BS is usually between 5 and 7 and I don't get bad hypos, rarely do I go below 4 so it's a mystery. I snack between meals regularly. I aim for between 4 and 5 as Dr. Bernstein even warns about long term effects of being over 6.00 (type1grit). I have about 90 to 100 carbs a day. I feel fantastic when my bs is in the 4's - much more energy.
 
Thanks for elaborating. Have they looked into this discrepancy? If you're usually between 5 and 7 but your hba1c is 4.2% you seem to have something unusual going on which makes hba1c unreliable as a means of seeing what your average bg has been in the past months.
We have a member with that same issue who gets a different test than hba1c, but I can't remember who it is.
Here's an article about it, it may be of use to you: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3912281/

(And @ashleyp , sorry to derail your thread with this)
 
JAT1 said:
Actually my BS is usually between 5 and 7 and I don't get bad hypos, rarely do I go below 4 so it's a mystery.
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There are a number of reasons why an hba1c can be inaccurate, I'd ask for a fructosamine test instead.
 
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