Hello! Been type 1 since early Oct 2019. Not recognising a hypo unless stood up or moving, so not driving at the moment. But now feeling shaky and ‘low’ all the time regardless of my blood glucose levels. Having more tests to see if there is another cause and why dx at age 51! Any words of advice appreciated! Thank you.
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TheClockworkDodo
Well-Known Member
- Relationship to Diabetes
- Type 1
Hi @SadieK and welcome to the forum 🙂
It's good that they're doing more tests, just in case there's anything else happening, but it may just be that your body has got used to having high blood sugar, which means that normal blood sugar feels low to it - this is called a "false hypo" and the way to deal with it is just to eat something (not a hypo treatment, just a small snack). If this is the case it's not surprising your body's not able to distinguish real hypos, and it should sort itself out in time, once your body gets used to normal levels.
Have you got a Freestyle Libre, which has sensors which monitor your blood sugar all the time, so you can see when it's dropping? If not it might be worth asking your diabetes team whether you qualify for one - not being able to recognise a hypo might mean you do, though they may want to wait and see if this settles down. Even if they don't think you qualify for the sensors on your long term prescription, they might be willing to sort something out on a temporary basis.
The diagnosis at age 51 is surprisingly common - when I was diagnosed, nearly 10 years ago (aged 44) my diabetes team acted as if they'd never come across such a thing before, but when I joined this forum I discovered that half the type 1s here were diagnosed in their 30s/40s/50s/60s - and actually, this is normal, over 40% of newly diagnosed type 1s are adults. So please don't worry about that!
It's good that they're doing more tests, just in case there's anything else happening, but it may just be that your body has got used to having high blood sugar, which means that normal blood sugar feels low to it - this is called a "false hypo" and the way to deal with it is just to eat something (not a hypo treatment, just a small snack). If this is the case it's not surprising your body's not able to distinguish real hypos, and it should sort itself out in time, once your body gets used to normal levels.
Have you got a Freestyle Libre, which has sensors which monitor your blood sugar all the time, so you can see when it's dropping? If not it might be worth asking your diabetes team whether you qualify for one - not being able to recognise a hypo might mean you do, though they may want to wait and see if this settles down. Even if they don't think you qualify for the sensors on your long term prescription, they might be willing to sort something out on a temporary basis.
The diagnosis at age 51 is surprisingly common - when I was diagnosed, nearly 10 years ago (aged 44) my diabetes team acted as if they'd never come across such a thing before, but when I joined this forum I discovered that half the type 1s here were diagnosed in their 30s/40s/50s/60s - and actually, this is normal, over 40% of newly diagnosed type 1s are adults. So please don't worry about that!
TheClockworkDodo
Well-Known Member
- Relationship to Diabetes
- Type 1
Just bumping this up because I'm surprised you haven't had any more replies yet, I think people have missed this thread.
Among others here, @Northerner and @SB2015 and @Bloden and @Robin and @stephknits were all diagnosed as adults so one or more of them may have more advice for you.
Among others here, @Northerner and @SB2015 and @Bloden and @Robin and @stephknits were all diagnosed as adults so one or more of them may have more advice for you.
Robin
Well-Known Member
- Relationship to Diabetes
- Type 1
- Pronouns
- She/Her
Hi @SadieK, I was also 51 when I was diagnosed. My GP assumed I was type 2, because she didn’t realise it was possible to be diagnosed with Type 1 at my age, though she did think it might be 'a weird Type 2' (her words) so she referred me to the hospital. The hospital looked at my blood results, said, Hmm, did a GAD antibody test which confirmed Type 1, and didn’t seem surprised, I guess they’d seen a few of us! They didn’t seem at all concerned with why I’d been diagnosed, just got on with the process of treating it.
I can’t help with your hypo symptoms, I'm afraid, I'm boringly normal in that field, but I hope you get some answers from your team.
I can’t help with your hypo symptoms, I'm afraid, I'm boringly normal in that field, but I hope you get some answers from your team.
rebrascora
Well-Known Member
- Relationship to Diabetes
- Type 1
- Pronouns
- She/Her
Hi Sadie
I am relatively new to diabetes too and diagnosed Type 1 at the age of 55 so you are not alone or particularly unusual in that... it is just that frontline Health Care Professionals (ie GPs) are not aware of how frequently it occurs and I suspect many late onset Type 1s are misdiagnosed as Type 2 as I was originally. Thankfully I was referred to a consultant and got Type 1 testing when oral medication and diet did not improve my high HbA1c.
I too get the shakes a lot of the time and feel like I might be hypo when I am not and despite tests, they have not got to the bottom of it yet.... I did wonder if it might be ME which is another autoimmune condition and these things can come together but it doesn't quite fit the bill. I test (finger prick) a lot to check where I am at as I have great difficulty in balancing my BG levels. I eat low carb to try to reduce the risk of hypos so I rarely inject more than 4 units and mostly just 2 or 3. Timing of the insulin before a meal is quite important as it seems to take as much as a hour + to get going in my system by which time I have spiked from my food. I do wonder if this is why I have the shakes a lot because my BG is so variable. ie rapid rate of increase or decrease. Which insulins are you on?
Sorry to hear you struggle to detect hypos when you are seated or lying down. That is a real concern and you should definitely push for a Freestyle Libre if you haven't got one already or even a Dexcom G6 with alarms because you are at risk of hypoing through the night. Being unable to drive as a result must also have a big impact. I hope you find something which helps you to manage it better.
I am relatively new to diabetes too and diagnosed Type 1 at the age of 55 so you are not alone or particularly unusual in that... it is just that frontline Health Care Professionals (ie GPs) are not aware of how frequently it occurs and I suspect many late onset Type 1s are misdiagnosed as Type 2 as I was originally. Thankfully I was referred to a consultant and got Type 1 testing when oral medication and diet did not improve my high HbA1c.
I too get the shakes a lot of the time and feel like I might be hypo when I am not and despite tests, they have not got to the bottom of it yet.... I did wonder if it might be ME which is another autoimmune condition and these things can come together but it doesn't quite fit the bill. I test (finger prick) a lot to check where I am at as I have great difficulty in balancing my BG levels. I eat low carb to try to reduce the risk of hypos so I rarely inject more than 4 units and mostly just 2 or 3. Timing of the insulin before a meal is quite important as it seems to take as much as a hour + to get going in my system by which time I have spiked from my food. I do wonder if this is why I have the shakes a lot because my BG is so variable. ie rapid rate of increase or decrease. Which insulins are you on?
Sorry to hear you struggle to detect hypos when you are seated or lying down. That is a real concern and you should definitely push for a Freestyle Libre if you haven't got one already or even a Dexcom G6 with alarms because you are at risk of hypoing through the night. Being unable to drive as a result must also have a big impact. I hope you find something which helps you to manage it better.
Thebearcametoo
Well-Known Member
- Relationship to Diabetes
- Parent
Hi Sadie. What are your levels like generally. If you’ve been very much in target (4-7) the raising your glucose a little can help with hypo symptoms returning but if you’re fairly newly diagnosed then you may not be in target all the time anyway. Have your team talked about a Libre or other monitor? That may help give a good picture of your levels so you can see if it is your glucose level that is making you feel like that. How often are you doing a finger prick? If you’re regularly doing a lot then it helps with the criteria for NHS funding for the Libre but I can’t remember the numbers that qualify as a lot.
A basic question but are you eating good sized meals with a mix of carbs, protein and fat and taking your insulin. It can be tempting to go very low carb to limit the amount of insulin that you take but this early in your diagnosis I think it’s generally recommended that you eat ‘as normal’ so they can get good data on how your body is doing.
A basic question but are you eating good sized meals with a mix of carbs, protein and fat and taking your insulin. It can be tempting to go very low carb to limit the amount of insulin that you take but this early in your diagnosis I think it’s generally recommended that you eat ‘as normal’ so they can get good data on how your body is doing.
Lizzzie
Well-Known Member
- Relationship to Diabetes
- Type 1
Hello! It would be really good to know what your BSs do all the time. Do you test with a glucometer or something more fancy? If a glucometer i'd make sure I was testing a LOT in your shoes, and try to be mindful of how you're feeling / any sensations when you find you are low or high. I used to find that slow onset hypos, e.g. while watching TV or working at a computer, I picked up a lot later / less easily than quick onset hypos e.g. running, or rushing about, or large insulin od d/t getting the carbs wrong or double-dosing. Feeling a bit hungry is usually my first sign, rather than anything more interesting!
SB2015
Well-Known Member
- Relationship to Diabetes
- Type 1
Hi @SadieK , from another person diagnosed with T1 in their 50s.
It is a lot to take on board at the start, but it does get easier.
A bit like learning to drive. Seems complex at the start, but after a long while you do most of it automatically and just watch for hazards, and deviations along the way.
I found it difficult to spot the hypos at the start. This was as mentioned about my body having got used to higher levels so felt hypo when I got them in range. Once I had been taught to match my insuoin Ito the amount of carbs I ate my levels settled down and my body was retrained. Have they offered you an education course. Well worth asking for this, for the new information but also to enable you to meet others with T1.
Keep in touch and keep asking questions.
It is a lot to take on board at the start, but it does get easier.
A bit like learning to drive. Seems complex at the start, but after a long while you do most of it automatically and just watch for hazards, and deviations along the way.
I found it difficult to spot the hypos at the start. This was as mentioned about my body having got used to higher levels so felt hypo when I got them in range. Once I had been taught to match my insuoin Ito the amount of carbs I ate my levels settled down and my body was retrained. Have they offered you an education course. Well worth asking for this, for the new information but also to enable you to meet others with T1.
Keep in touch and keep asking questions.
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