Diagnosed T1 recently as an adult but had Hypos for 20+ years

[Claire007]

Hi there, it's been a few months now since my diagnosis and I'm pleased to say with help from my DSN and this forum, I've got my Hba1c down from 108 at diagnosis to 51 in the space of 9 weeks.
Now that things have settled down, I feel I should investigate a bit further! I can clearly remember having my first hypo aged 23 and I've had numerous episodes over the years. How I wish I'd had a BG monitor to check exactly how low I went! I never really knew the correct way to treat so would just have a couple of gluco tabs or a copious amounts of chocolate until I felt 'back in the room!'
So over the years, I was dismissed by doctors, tested negatively for diabetes and was told to carry some glucose with me. I learnt for myself that breakfast was to be avoided or I'd hypo 2 hrs later, and I have always eaten lowish carb in the day, sandwiches were to be avoided, as was anything sweet on an empty stomach. For some reason, I could get away with carbs with my evening meal. (And desserts/chocolate etc)
When I was first diagnosed, I told my DSN i'd had hypos all my adult life, (I'm 44 now) she said she has heard many newly diagnosed patients say the same but it's not linked to developing type 1, just means I'm sensitive to insulin.
So you knowledgable folk, any opinion on this? Does anyone else relate to this?

Many thanks,

Claire.

 

[urbanracer]

Hi there, it's been a few months now since my diagnosis and I'm pleased to say with help from my DSN and this forum, I've got my Hba1c down from 108 at diagnosis to 51 in the space of 9 weeks.
Now that things have settled down, I feel I should investigate a bit further! I can clearly remember having my first hypo aged 23 and I've had numerous episodes over the years. How I wish I'd had a BG monitor to check exactly how low I went! I never really knew the correct way to treat so would just have a couple of gluco tabs or a copious amounts of chocolate until I felt 'back in the room!'
So over the years, I was dismissed by doctors, tested negatively for diabetes and was told to carry some glucose with me. I learnt for myself that breakfast was to be avoided or I'd hypo 2 hrs later, and I have always eaten lowish carb in the day, sandwiches were to be avoided, as was anything sweet on an empty stomach. For some reason, I could get away with carbs with my evening meal. (And desserts/chocolate etc)
When I was first diagnosed, I told my DSN i'd had hypos all my adult life, (I'm 44 now) she said she has heard many newly diagnosed patients say the same but it's not linked to developing type 1, just means I'm sensitive to insulin.
So you knowledgable folk, any opinion on this? Does anyone else relate to this?

Many thanks,

Claire.

Hi Claire, your experiences are not uncommon. I had hypo 'like' symptoms in my 20's, especially when exercising. I was told my blood sugars were 'a bit high', 3 years before eventual diagnosis at age 54. My endo says this is not possible and diabetes develops over months and not years!

 

[himtoo]

strictly an opinion this but I am thinking reactive hypoglycaemic is somehow involved
i am tagging @nosher8355 for his view as he has this and may be able to offer some support / confirmation

 

[Brunneria]

Yup.
I agree about the RH.

Large sections of the population experience reactive hypoglycaemia at various times during their lives (docs usually fail to even realise it exists). Many people have it regularly.
Some of those people go on to develop T2. Most don't.
Maybe if you hadn't developed T1 you would have gone the same route as me, and developed T2 in a few years.

Without wishing to place you on a microscope slide, I am curious to know whether you are still more likely to hypo easily.
Or whether now your own body isn't producing insulin, you are actually more on an even keel.
Did that make sense?

I think RH is a factor in encouraging insulin resistance, leading to the T2. But I wouldn't describe it as your nurse did. She said that you were particularly sensitive to insulin. I would look on it as your body was either over-producing insulin, or your insulin 'off-switch' wasn't working properly.

 

[Lamont D]

Hi there, it's been a few months now since my diagnosis and I'm pleased to say with help from my DSN and this forum, I've got my Hba1c down from 108 at diagnosis to 51 in the space of 9 weeks.
Now that things have settled down, I feel I should investigate a bit further! I can clearly remember having my first hypo aged 23 and I've had numerous episodes over the years. How I wish I'd had a BG monitor to check exactly how low I went! I never really knew the correct way to treat so would just have a couple of gluco tabs or a copious amounts of chocolate until I felt 'back in the room!'
So over the years, I was dismissed by doctors, tested negatively for diabetes and was told to carry some glucose with me. I learnt for myself that breakfast was to be avoided or I'd hypo 2 hrs later, and I have always eaten lowish carb in the day, sandwiches were to be avoided, as was anything sweet on an empty stomach. For some reason, I could get away with carbs with my evening meal. (And desserts/chocolate etc)
When I was first diagnosed, I told my DSN i'd had hypos all my adult life, (I'm 44 now) she said she has heard many newly diagnosed patients say the same but it's not linked to developing type 1, just means I'm sensitive to insulin.
So you knowledgable folk, any opinion on this? Does anyone else relate to this?

Many thanks,

Claire.

Yup.
I agree about the RH.

Large sections of the population experience reactive hypoglycaemia at various times during their lives (docs usually fail to even realise it exists). Many people have it regularly.
Some of those people go on to develop T2. Most don't.
Maybe if you hadn't developed T1 you would have gone the same route as me, and developed T2 in a few years.

Without wishing to place you on a microscope slide, I am curious to know whether you are still more likely to hypo easily.
Or whether now your own body isn't producing insulin, you are actually more on an even keel.
Did that make sense?

I think RH is a factor in encouraging insulin resistance, leading to the T2. But I wouldn't describe it as your nurse did. She said that you were particularly sensitive to insulin. I would look on it as your body was either over-producing insulin, or your insulin 'off-switch' wasn't working properly.

Hi @Claire007
I agree with @Brunneria, you have had episodes of Hypoglycaemia.
You are producing too much Insulin.
There is plenty of information on the ' reactive hypoglycaemia' thread. Brunneria will give you the links.
Over the years your hypo sensitivity will have been reduced.
Not having a blood glucose monitor leaves you in the dark.
You have already noticed that certain things you eat are having an effect on you, so the condition can be controlled, as me and Brunneria have.
Instead of glucose tablets, have a cuppa and a plain biscuit (rich tea) if you feel low. Then when you feel better have a low carb small meal!
As glucose or other glucose based treatments will yo yo the the hypo into a hyper (spike) then hypo again!
Please read the thread and let us know more details, as we can steer you to get control.
I always say that, most GPs and even specialists do not recognise the condition.
If you do get referred and I would want to if I was you, I hope you get a specialist like I have!
Hope this helps!

I'm not diabetic, I was misdiagnosed with T2 like yourself!
I had the run around, I lived in frustration hell, until my hypo at the GPs surgery got me my endocrinologist appointment and since he recognised what was happening, he literally saved my life.!
Don't just let things carry on. Get a referral and we will help you as much as possible.

RH is rare and we are all unique!

 

[wiserkurtious]

I can also relate to you also as I've only just been diagnosed a month ago with type 1 diabetes,in the past i kinda knew that something wasn't right with me. When I went to see the diabetic nurse I explained that I've had these feeling in the past of feeling the highs and lows and, she just kinda didn't pay much attention so the feelings of been diabetic aren't something new to me as I feel like I've been living with it for a while I don t know if we've all had that feeling post diagnosis??

 

[Emmotha]

I can also relate to you also as I've only just been diagnosed a month ago with type 1 diabetes,in the past i kinda knew that something wasn't right with me. When I went to see the diabetic nurse I explained that I've had these feeling in the past of feeling the highs and lows and, she just kinda didn't pay much attention so the feelings of been diabetic aren't something new to me as I feel like I've been living with it for a while I don t know if we've all had that feeling post diagnosis??

Same here. Have also figured post T1 diagnoses that I always had reactive Hypoglycemia. When ppl asked why I needed to eat little and often, I always thought "well what if I become type 1 they wouldn't moan about me eating". Weird eh

 

[Claire007]

Yup.
I agree about the RH.

Large sections of the population experience reactive hypoglycaemia at various times during their lives (docs usually fail to even realise it exists). Many people have it regularly.
Some of those people go on to develop T2. Most don't.
Maybe if you hadn't developed T1 you would have gone the same route as me, and developed T2 in a few years.

Without wishing to place you on a microscope slide, I am curious to know whether you are still more likely to hypo easily.
Or whether now your own body isn't producing insulin, you are actually more on an even keel.
Did that make sense?

I think RH is a factor in encouraging insulin resistance, leading to the T2. But I wouldn't describe it as your nurse did. She said that you were particularly sensitive to insulin. I would look on it as your body was either over-producing insulin, or your insulin 'off-switch' wasn't working properly.

Thanks, @Brunneria,

I do think that now I'm type 1, it's easier to control the hypos funnily enough as I'm now giving myself the correct amount of insulin my body needs for the carbs I'm eating, so if I get the ratio right, I won't hypo whereas before, I could only control it by diet. I have good hypo awareness still. Who knows maybe having RH for 20+ years without knowing it means my pancreas has gone 'nope! No more, I'm packing up now!'

 

[Claire007]

Hi @Claire007
I agree with @Brunneria, you have had episodes of Hypoglycaemia.
You are producing too much Insulin.
There is plenty of information on the ' reactive hypoglycaemia' thread. Brunneria will give you the links.
Over the years your hypo sensitivity will have been reduced.
Not having a blood glucose monitor leaves you in the dark.
You have already noticed that certain things you eat are having an effect on you, so the condition can be controlled, as me and Brunneria have.
Instead of glucose tablets, have a cuppa and a plain biscuit (rich tea) if you feel low. Then when you feel better have a low carb small meal!
As glucose or other glucose based treatments will yo yo the the hypo into a hyper (spike) then hypo again!
Please read the thread and let us know more details, as we can steer you to get control.
I always say that, most GPs and even specialists do not recognise the condition.
If you do get referred and I would want to if I was you, I hope you get a specialist like I have!
Hope this helps!

I'm not diabetic, I was misdiagnosed with T2 like yourself!
I had the run around, I lived in frustration hell, until my hypo at the GPs surgery got me my endocrinologist appointment and since he recognised what was happening, he literally saved my life.!
Don't just let things carry on. Get a referral and we will help you as much as possible.

RH is rare and we are all unique!

Your reply has confused me a bit @nosher8355
I'm Type1 so definitely not producing too much insulin ( I may have been in the past of course)
I'll definitely have a read up on RH but I guess the type 1 diagnosis trumps the RH in terms of treatment as I'll need insulin. If RH is overproduction and type1 is no production (or very little) I can't have both?

Thanks for your replies, I'd never heard of reactive hypoglycaemia before, wish I'd known about it before.

 

[Lamont D]

Your reply has confused me a bit @nosher8355
I'm Type1 so definitely not producing too much insulin ( I may have been in the past of course)
I'll definitely have a read up on RH but I guess the type 1 diagnosis trumps the RH in terms of treatment as I'll need insulin. If RH is overproduction and type1 is no production (or very little) I can't have both?

Thanks for your replies, I'd never heard of reactive hypoglycaemia before, wish I'd known about it before.

Sorry, didn't want to confuse you!

RH is a rare condition, where blood glucose levels are often all over the place.
Hyper as well as hypo. Especially if, they are consistently eating carbs.
I think that your insulin balance hasn't been right for quite a while!

Yes I believe that T1 trumps RH.
I can't imagine having to take insulin with RH!

Mind you saying that, my meds make my pancreas produce more insulin!!!

It's weird ain't it?