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Annoying symptom - What can I do about this?

Hi @tiredgirl91 I was diagnosed LADA/T1 after about 6 months of unexplained weight loss (over 3st in 6 months), increased peeing and thirst aged 51 - but the professionals were all confused, did not think it was T1/LADA at first and it took GAD testing, pestering and going private, to see my now NHS endocrinologist, to get the diagnosis and get the ball rolling; so please don't be surprised if you don't get a straight answer, especially from a GP who will probably only be up to speed on T2s if you are lucky. Everything at my surgery has to go via the Diabetes Nurse who was basically hopeless, so don't be fobbed off. My surgery deals with T2s, the hospital deal with T1s, and LADA is a grey area, especially if not insulin dependent, it could be a postcode lottery.

I never had a pre-diabetes diagnosis, as even when I was diagnosed with a whopping HbA1c I felt fine and/or symptoms were peri-menopausal; wishy-washy related, no ketones or DKA for me, it was a discovery whilst giving me a once over and all the bloods for a bit of persistent back ache and the benefit of hindsight!

I was underweight for a while after starting low carb (and general fear of eating anything at all!), but with a change of tastebuds and my new addiction to greek yogurt and peanut butter I have put on a little, so back in the low-normal range.

Good luck with your appointment, I hope you get answers.
 
Mrs HJG said:
Hi @tiredgirl91 I was diagnosed LADA/T1 after about 6 months of unexplained weight loss (over 3st in 6 months), increased peeing and thirst aged 51 - but the professionals were all confused, did not think it was T1/LADA at first and it took GAD testing, pestering and going private, to see my now NHS endocrinologist, to get the diagnosis and get the ball rolling; so please don't be surprised if you don't get a straight answer, especially from a GP who will probably only be up to speed on T2s if you are lucky. Everything at my surgery has to go via the Diabetes Nurse who was basically hopeless, so don't be fobbed off. My surgery deals with T2s, the hospital deal with T1s, and LADA is a grey area, especially if not insulin dependent, it could be a postcode lottery.

I never had a pre-diabetes diagnosis, as even when I was diagnosed with a whopping HbA1c I felt fine and/or symptoms were peri-menopausal; wishy-washy related, no ketones or DKA for me, it was a discovery whilst giving me a once over and all the bloods for a bit of persistent back ache and the benefit of hindsight!

I was underweight for a while after starting low carb (and general fear of eating anything at all!), but with a change of tastebuds and my new addiction to greek yogurt and peanut butter I have put on a little, so back in the low-normal range.

Good luck with your appointment, I hope you get answers.
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Hi, thank you for sharing your story and I'm also glad that you got answers and you are doing better now (weight-wise and I hope, health-wise as well).
The thing that confuses me is that I have read somewhere that LADA doesn't start as prediabetes. My HbA1c are in the prediabetic range, that means, not terribly high. And I get high FBG numbers (sometimes those readings are the highest of my whole day) and readings 2 hours post-meal that again, are not terribly high, usually around 8mmol/l up to 10.5 mmol/l.
 
tiredgirl91 said:
The thing that confuses me is that I have read somewhere that LADA doesn't start as prediabetes. My HbA1c are in the prediabetic range, that means, not terribly high. And I get high FBG numbers (sometimes those readings are the highest of my whole day) and readings 2 hours post-meal that again, are not terribly high, usually around 8mmol/l up to 10.5 mmol/l.
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Prediabetes is simply a raised bgl that’s all - that precedes a diagnosis of diabetes. Usually of type 2 but not always.

A fast onset on type 1 is unlikely to be caught in that precise spot between normal and diabetic.
Type 2 spend a fair while there, sometime years and years so it’s easy to be caught there.
LADA falls somewhere in between in time scale of development so might be tested in that region, might not. Too many drs don’t even recognise it still and think it’s all rapid (child) onset type 1 or type 2.

LADA is often initially misdiagnosed as type 2 and as prediabetes is simply seen as a precursor of this usually it stands to reason this is just as likely to be part of that same misdiagnosis when LADA is partially identified (as diabetes starting but not accurately as the right type)
 
With LADA when caught early, it just looks like classic type 2. Until the Insulin secretion drops low enough to push glucose levels above what dietary measures can cope with, then it becomes much more apparent, provided the medic actually understands LADA.
 
Thank you everyone for your kind words and helpful suggestions. I just hope that I will get my answers, sooner rather than later.

So, I guess my next step should be to request GAD antibodies and c-peptide tests? Is there anything else I should do in order to clarify my situation?

And what if it actually turns out to be LADA? How long can I manage that without insulin, approximately?
 
tiredgirl91 said:
And what if it actually turns out to be LADA? How long can I manage that without insulin, approximately?
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As with everything else diabetes related, we are all different.
However, I have read that it can be beneficial to start insulin earlier to give your failing beta cells some assistance and keep them alive longer.
I would definitely rather start insulin earlier than unnecessarily restrict my diet.
 
tiredgirl91 said:
And what if it actually turns out to be LADA? How long can I manage that without insulin, approximately?
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I am the opposite of @In Response and want to stay off insulin for as long as possible - we are all different not only in our diabetic presentation but also the treatment and our personal values and priorities, and no-one is wrong.

Although I had a short (3 week) dabble with insulin, I was taking 5 units a day and going low 4s and treating, from being in the mid 20s a couple of weeks earlier and having only taken 8 units twice a day to start, so it was all a worrying faff, and as my eyesight went squiffy with the sudden BG drop, I couldn't actually see to crank up the dial and inject, so it was a disaster and don't even mention the DVLA!

I am on <100g carbs per day, take supplements of selenium, zinc and Vit D3(K2) plus metformin, and will be at the 18 month point this coming week, so hoping for a good non-diabetic HbA1c result again. I happily live now without the additional carbs, having to calculate, inject, store, and carry insulin around, I value jumping in the car without having to test before I go and potentially wait/treat etc, having no fear of hypos and not being on the BG roller-coaster whilst I am still producing a lot of my own insulin.

If you have. (or suspected). LADA you should be seen by an endocrinologist and be eligible for Libre on prescription so that you can keep a close eye on your levels, and notice as early as possible any upward shift in numbers and need for starting insulin therapy, be that in weeks, months or hopefully years, when closed loop systems will be the norm, along with hover boots and colonies on Mars ;)
 
tiredgirl91 said:
Of course I will let you know, I'm already a bit anxious about the appointment and all the questions I have to ask.
Thank you once again for all your suggestions and support :)
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I find it helps to write everything down before visiting the surgery rather than trying to remember everything. Give your list to your GP, it will save time and he/she can prioritise
 
In Response said:
As with everything else diabetes related, we are all different.
However, I have read that it can be beneficial to start insulin earlier to give your failing beta cells some assistance and keep them alive longer.
I would definitely rather start insulin earlier than unnecessarily restrict my diet.
Click to expand...
I was diagnosed 15 years ago. I follow a low carb diet and only find it slightly restrictiv, mainly bread when we eat out for breakfast/lunch. After low carbing and losing weight my diabetes and weight are now “normal”. I don’t intend to ever take insulin. you can’t just eat a totally unrestricted diet on insulin.
 
tiredgirl91 said:
I'm literally so tired of going to the bathroom so often.
Today I also drank a lot of sparkling water because I'm just craving it (not "normal" tap water but it has to be sparkling and ice cold out of the fridge). I also crave Coke Zero but I try to limit it to one can a day.
Didn't do anything very strenous apart from light walking and household chores.
But I feel like this is just too much
I'm urinating about 20+ times a day and I get up at night at least 2 times. It also interrupts my sleep. I feel like the only things that I do during the day are drinking and urinating.
How can this be stopped?
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Just to check.... Do you actually urinate a lot? Not little bits at a time, but loads? Do you experience bladder pain (interstitial cystitis) , when you don't actually have that much to spill? Because you could just have an irritable bladder, maybe need a little bit of pelvic muscle training as well. I couldn't handle anything carbonated for a while, or tomatoes, or black pepper kernels... Any of them'd set my bladderpain off, which was often helped by flushing out the irritant and laying down with a hot water bottle on the bladder. And because I was so used to peeing often, I got signals that I had to go, when I really didn't. I ended up weeing in a little painter's bucket that had measurements on the side, so I could see how much I was urinating and whether it was a full bladder, or just my body getting wires crossed. Took about a week or two to re-train my bladder, just holding it for a bit longer, and a bit longer, and a bit longer.... Until function returned to normal.

Could be something else entirely, as bladder infections are very, very common in diabetics, but just in case... You mentioned fizzy drinks and that's the first thing I thought of. They made my bladder go OOF! Maybe leave them be for a few days and see whether it makes a difference? In any case, good luck!!!
 
Murphymycat said:
I was diagnosed 15 years ago. I follow a low carb diet and only find it slightly restrictiv, mainly bread when we eat out for breakfast/lunch. After low carbing and losing weight my diabetes and weight are now “normal”. I don’t intend to ever take insulin. you can’t just eat a totally unrestricted diet on insulin.
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Let’s hope you are in the lucky enough position to never have to take insulin. For those of us that it keeps alive we are very very grateful for it. Plus if we so choose you can eat a totally unrestricted diet. I choose to be moderate but many don’t and manage very well.
 
Murphymycat said:
you can’t just eat a totally unrestricted diet on insulin.
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Why not?
I do. Or at least I eat the same diet I did before I was diagnosed with Type 1 diabetes.
I am not overweight. I have a HBA1C below the "type 2 cut-off". I exercise a lot. I do a stressful job. I travel. ...

I take insulin and am incredibly grateful for it.
 
JoKalsbeek said:
Just to check.... Do you actually urinate a lot? Not little bits at a time, but loads? Do you experience bladder pain (interstitial cystitis) , when you don't actually have that much to spill? Because you could just have an irritable bladder, maybe need a little bit of pelvic muscle training as well. I couldn't handle anything carbonated for a while, or tomatoes, or black pepper kernels... Any of them'd set my bladderpain off, which was often helped by flushing out the irritant and laying down with a hot water bottle on the bladder. And because I was so used to peeing often, I got signals that I had to go, when I really didn't. I ended up weeing in a little painter's bucket that had measurements on the side, so I could see how much I was urinating and whether it was a full bladder, or just my body getting wires crossed. Took about a week or two to re-train my bladder, just holding it for a bit longer, and a bit longer, and a bit longer.... Until function returned to normal.

Could be something else entirely, as bladder infections are very, very common in diabetics, but just in case... You mentioned fizzy drinks and that's the first thing I thought of. They made my bladder go OOF! Maybe leave them be for a few days and see whether it makes a difference? In any case, good luck!!!
Click to expand...

When I have to urinate, it is usually loads. And it is always clear/light yellow. Even if I haven't drank as much beforehand. There is no pain or burning. Just that annoying sense of urgency. And it disturbs my sleep, last night I had to go 4(!!!) times, even though yesterday I only had like 1 can of Coke Zero for the whole day and one coffee early in the day.
 
Murphymycat said:
I find it helps to write everything down before visiting the surgery rather than trying to remember everything. Give your list to your GP, it will save time and he/she can prioritise
Click to expand...

That is what I always do. My doctor actually mentioned that as a positive thing when I went last time, that I am always, always prepared :) I also do my "reading and research". It is the anxious side of me that won't let me go to an appointment "just like that" :D
 
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