Am I exaggerating my symptoms?

[Veilofignorance]

Hi all. I'm a 46 year old male, diagnosed in November 2024. I generally have good control (currently 93% in range), but also have a tendency sometimes to ping-pong between highs (12-13 mmol/l) and lows (3.4-3.9 mmol/l). When this happens I can get wiped out. I have very little energy, hobble about like an old man despite otherwise being a keen long-distance runner, and often I'm useless for the day following lows, sometimes needing time off work to just lie in bed and recover. I've had two or three occurrences of this in the last two or three months.

At my regular diabetes nurse appointment this morning my nurse said this was unusual. She said my Libre data showed I wasn't getting severe lows or very high peaks and she would expect that I would be recovered from any lows within the same day, without being wiped out the next day. This has got me worried that I'm inadvertently "making the most" of my condition, that at least some of my symptoms are mental, and that I should just be getting on with things. Especially on the occasions when it affects my work (about which I have strong feelings of guilt).

I'd be really grateful for any advice. Do my symptoms seem unusual? I don't know any other T1Ds so find it challenging to work out what is reasonable in my situation. Thanks.

 

[Inka]

It would be a little unkind to say you’re exaggerating your symptoms @Veilofignorance but maybe you’re subconsciously panicking and that’s causing an adrenaline response that makes you feel off.

3.9 isn’t a hypo (although it’s best to stay above 4 if you’re on meds). 3.4 is just a hypo but definitely shouldn’t need a day in bed to recover from! You should be feeling better within an hour, probably less.

Another point - what’s your Libre Low Alarm set at? Set it higher so you can catch lows before you dip low. Also, are you fingerpricking to check lows and highs? It’s very possible your 12 is actually a 10 anyway.

Edited to add that I see you were only diagnosed at the end of last year. It’s still early days for you. Don’t underestimate the psychological and emotional affect of a Type 1 diagnosis. I would say it took me more than a year, maybe approaching two years, to fully get my emotions settled around it.

 

[rebrascora]

Diabetes affects us all differently and there can be as much of a psychological element to it as physical and that psychological impact is as real and valid as the physical effects, so try not to feel guilty but perhaps work out what you can do to try to prevent these episodes, if you genuinely feel they are related to hypos. Also important to consider that they might be caused by something else. I believe the likes of Coeliac can cause severe exhaustion and I think it is also autoimmune and having one autoimmune condition (Type 1) means that we are at higher risk of developing others or possibly Chronic Fatigue Syndrome. Anaemia could be another cause. Could the hypos be causing silent migraines?

I do agree with your nurse that the extreme fatigue that you are experiencing is unusual after hypos but that doesn't mean it isn't real.

Have you considered raising your low alarm on your CGM to try to prevent these hypos?
Have you analysed your results to see if there is a any particular trigger for these unstable BG periods. Keeping a food diary can sometimes be helpful or could it be associated with increased exercise/activity the previous day or alcohol consumption. Relatively moderate (a couple of glasses of wine) can cause hypos if you don't adjust your insulin or carb consumption for it.

Have you done a DAFNE or local equivalent. intensive education course on the use of insulin? It might be worth asking about that to see if it can help you resolve the problem, if you haven't done it.

Hope you are able to find something that helps resolve the problem.

 

[Veilofignorance]

Thanks @Inka and @rebrascora for your really helpful replies, it’s good to get some additional perspective on this.

I’ve always been told 3.9 or below is a hypo, and this is what both Diabetes UK and the NHS says online. But is this not correct?

More generally I do agree that the mental aspects around the daily grind of diabetes could be a contributing factor to the fatigue that comes with erratic BG. I was very enthusiastic about closely managing my diabetes in the early months, and although I do still manage it well the enthusiasm is coming off a bit and reality is sinking in and getting me down. Perhaps I just need a mental reset and, as you say @rebrascora, to use some in-person support so as not to feel isolated.

 

[Inka]

@Veilofignorance It’s best to treat anything under 4 as a hypo. My point was that at 3.9, although you should treat as a hypo, you shouldn’t be feeling bad. People without diabetes would commonly get a 3.9. Technically a hypo is below 3.5 but we’re told to treat the limit as 4 for safety.

My tip is not to be a perfectionist. If you manage your diabetes too closely and too tightly, you’ll burn out. Obviously, you should control it as best you can but obsessing about it too much isn’t the way to go. I’m not saying you’re doing that at the moment, just warning that it’s not a good thing to do.

 

[mashedupmatt]

Hi @Veilofignorance and welcome to the forum - you are definitely not exaggerating your symptoms but the numbers you have mentioned would not give me any cause for concern - and you will never have a flat line or be able to get 100% Time in Range (it's impossible!) - seeing as you are relatively new to diagnosis it is easy to get to fixated with the numbers (I know I did!) - as @rebrascora has mentioned a DAFNE (Or equivalent) course would really help with the carb counting and adjusting doses safely - if not available you can do the free "BERTIE" Course online which covers a lot of the DAFNE material - it can be found here:

Bertie Diabetes

bertiediabetes.com

 

[helli]

Another perspective on this:
You are not just talking about hypos, you are talking about big BG swings from hypo (or close to) to hyper. Whilst I don't find the "slight hypo" particularly draining, I do find yoyoing BG exhausting.
I wonder if you are overtreating your hypo. Do you use finger pricks to check your hypo and hypo recovery? This is recommended due to the way that CGMs work - they can under estimate lows and stay their too long. If you assume the CGM is correct, you may keep treating the hypo after your BG has risen resulting in the overtreatment and the roller-coaster begins.
To add to the underegging lows, CGMs can also overegg highs so you may then overtreat the high with too much insulin resulting in another hypo and the bouncing continues.

This is why it is recommended to check highs and lows (and recoveries) with finger pricks unless you are definitely feeling hypo.

 

[Veilofignorance]

@Inka, @mashedupmatt, yes I'm a perfectionist and yes I look at the numbers more than I probably should! For me the numbers are a double-edged sword - they give you something tangible to grab onto during the loss of control that a diagnosis brings, but you're right that it's easy to obsess over them.
@helli I need to get better at finger-pricking to check CGM numbers. I do it sometimes but not often enough and I do know that it's another way to get a better grip on things, but it is also another burdensome bit of diabetes admin. But I will improve!
Generally, thank you all. It's a great bunch on here, thanks for giving your time and advice so generously.

 

[Lucyr]

At my regular diabetes nurse appointment this morning my nurse said this was unusual. She said my Libre data showed I wasn't getting severe lows or very high peaks and she would expect that I would be recovered from any lows within the same day, without being wiped out the next day. This has got me worried that I'm inadvertently "making the most" of my condition, that at least some of my symptoms are mental, and that I should just be getting on with things. Especially on the occasions when it affects my work (about which I have strong feelings of guilt).

Yeah I’d agree your symptoms seem psychological rather than physical. That doesn’t mean you’re choosing to exaggerate your symptoms though it is still a real thing.

I've been there myself, hypos in a certain group setting were always so much worse, to the point that I’d physically change colour, go grey, lose the ability to speak, shake, people would notice I was hypo even in the high 3s which is a very mild low and more of a “you should feel it but it shouldn’t really be noticeable to others more a stick some carbs in your mouth and carry on” level.

What helped me most was to have a solid hypo routine. Set your cgm alarm higher so that you’re preventing hypos and when it goes off fingerprick, but then importantly do not rely on the cgm to tell you whether your blood sugar is going back up again. For lows it lags behind fingerpricks, can say you’re still dropping when you’re not, and can add to your panick levels.

So have a set routine for hypos - wash hands, fingerprick, treat with the same item each time if you can, keep it in the same place, set a timer to recheck, take all the thinking out of it basically. And when low make sure to take time to focus on your breathing and keeping calm.

No one notices my hypos now, and I rarely have them since libre became a cgm. But when I do, I just fix it and carry on, they aren’t disabling any more.

 

[Leadinglights]

@Inka, @mashedupmatt, yes I'm a perfectionist and yes I look at the numbers more than I probably should! For me the numbers are a double-edged sword - they give you something tangible to grab onto during the loss of control that a diagnosis brings, but you're right that it's easy to obsess over them.
@helli I need to get better at finger-pricking to check CGM numbers. I do it sometimes but not often enough and I do know that it's another way to get a better grip on things, but it is also another burdensome bit of diabetes admin. But I will improve!
Generally, thank you all. It's a great bunch on here, thanks for giving your time and advice so generously.

Although the CGM is a wonderful bit of kit it is worth being aware of it's limitations and not become over reliant and by not checking with a finger prick could be aggravating the problems you are having.