A somewhat unexpected.. Hello

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Type 1
Hello Everybody,

I am embarking on my diabetes 'journey' in my mid 30s. I was in the last week diagnosed with Type 1 diabetes. It came as a bit of a shock and was found whilst investigating something else which is also rather scary, which still isn't resolved.

I had no inkling I was diabetic, but looking back, the signs were there - extreme thirst, constantly fatigued, skin problems on feet and groin area.

I am a software engineer, so the engineer in me is somewhat fascinated with the grainy details of how diabetes comes about, medication and impact on the body. Also I find it strangely engaging to log my blood sugar on the app.

Despite the shock and trepidation, I am looking forward to engaging with you all and learning more about this condition.

Best Wishes,
WhenLifeGivesYouLemons
 
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Hi and welcome

Sorry to hear you qualify to join our merry band here and especially as you have other serious health conditions to manage along side diabetes. Hope their are not too many conflicts as diabetes is tricky enough!

Good that you are an engineer and have an analytical mind as that will come in handy. The difficulty you may experience is that biological systems are messy and don't give you the nice, clean reproducible results that maths and physics do. If you are a perfectionist diabetes can be a bit difficult to come to terms with. What you should like though is that there is some great tech out there to help us these days.... I am very much hoping they have already given you Freestyle Libre sensors which enable you to scan a sensor on your arm to get your levels rather than finger pricking all the time?? If not ask about it as the NICE guidelines are that all Type 1s should be offered them. Unfortunately it is probably still a bit of a postcode lottery but if you keep asking you will eventually be successful. Great bit of kit when it works well and provides masses of data which, as an engineer, you will love, but has it's limitations and relaibility issues for some people.

Would you like to tell us which insulins they have started you off on and are you on fixed doses or have they got you carb counting from the start?

Anyway, just wanted to say "Hello"! Make yourself at home here and ask whatever questions you need answers to. We might give you lots of different answers because diabetes can be quite individual but by working through what works for other people, you will find out what works for you. Think of yourself as a guinea pig that you are going to be doing lots of testing on! 🙄
 
Another hello over here!
T2 so can’t offer any particularly relevant pearls of wisdom other to say that this is a great place full of wonderful people who have a wealth of experience about everything to do with most types of diabetes. So make yourself comfortable and remember that there’s no such thing as a daft question!

Also if you’re technically minded you’re going to get on really well with @Gwynn i think!
 
Welcome @WhenLifeGivesYouLemons 🙂 Type 1 is a bit like Monty Python’s Spanish Inquisition - it usually turns up unexpectedly. It’s wrongly thought of as a childhood condition, but, in fact, more people are diagnosed as adults than as children, so you’re far from alone.

What insulins are you on? Have you been shown how to carb count for meals?
If you love a book as well as figures, here are two great books about Type 1:

Think Like a Pancreas’ by Gary Scheiner.

And Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas (ignore the title - it’s great for adults too)
 
Hi @rebrascora @ColinUK @Inka

I appreciate you all taking the time to reply.

I am actually on something called Gliclazide atm. My understanding is that this is primarily for Type 2 diabetes, but the Doctor has given me a weeks supply and suspects they will have very little impact as they are confident I am Type. So far this has been true, with my blood sugars consistently hanging around 13. They said I will very likely be on insulin, but I am also away this week (staycation) and they didn't like the idea of giving me insulin when I am in unfamiliar place due to the risk of complications (I assume they mean hypo). I also had yet another blood test done (I assume to confirm it is type one?). I also have the nurse ringing me on Monday to check on my blood sugar levels for the last week.

Not looking forward to having insulin and reading about hypos is pretty scary.

The thing I am most looking forward to is feeling less brain fogged and tired. I hope that if my sugars come down this happens. Can anyone confirm if their blood sugars come down they feel a bit more 'normal'? I appreciate its subjective.

The tech is weirdly cool, I like the idea of scanning for blood sugar rather than finger pricking. @rebrascora I assume that when the official confirmation is in they may offer it to me on the NHS.

@Inka I am a huge book lover, and read everything I can get my hands on, so certainly going to look into acquiring them! I haven't been told about carb counting, but I have been given a sheet with foods I should only have in moderation due to high GI.

Lastly, whilst I am always tired, I am not sleeping as much as I would like. Seems like a vicious circle, I am tired but struggle to get a decent block of sleep. Anyone else encounter this?

Once again, I appreciate the warm welcome.
 
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If you are confirmed T1 then yes you’ll be taking insulin and yes you should be given access to the tech which makes monitoring somewhat easier but sometimes it’s apparent that people have a bit of a battle with their GP/PCT to get it.

You’re welcome to join the Group 7day waking thread as well. That’s pretty much the most social of these threads even though it started off as a place to log our waking BG numbers it’s also where most regulars vent frustrations and make each other laugh!
 
You’ll feel hugely more normal ion insulin! I didn’t realise how rough I’d been feeling until I got put on insulin, and then I felt better very quickly.

I kind of get the logic of putting you on Gliclazide but the sooner you can get off that and on to insulin, the better if you’re Type 1. Gliclazide can squeeze the remaining life out of your beta cells whereas insulin will support them. Early introduction of insulin will not only make you feel better, it will allow you to lead a normal life, and can prolong the life of your remaining beta cells, making control easier. It really irritates me when adult-onset Type 1s are made to struggle on.

Don’t be afraid of insulin. It’s life-saving. Before the discovery and purification of insulin, Type 1 was terminal. Yes, insulin is a big lifestyle change, but it will gradually get easier.
 
It's so confusing, I did a blood test before breakfast, and it was 12.5, did one just now (I took my tablet with breakfast), and its rocketed to 16.4.

All I had was fruit and fibre! Is there a point when your blood sugar gets so high you need to seek more urgent help? My Hba1c from my last proper blood test was 80.

All these different units are pretty confusing.
 
It's so confusing, I did a blood test before breakfast, and it was 12.5, did one just now (I took my tablet with breakfast), and its rocketed to 16.4.

All I had was fruit and fibre! Is there a point when your blood sugar gets so high you need to seek more urgent help? My Hba1c from my last proper blood test was 80.

All these different units are pretty confusing.
That is not too surprising as you had a high carb breakfast when your level was already pretty high and the tablets will not work directly on the food, they encourage the pancreas to produce more insulin but if it is as suspected you are Type 1 then it may not be able to do so. A normal portion of a cereal like fruit and fibre could be 35g carb so would likely increase your level by that much. Many people would try to have a lower carb breakfast of Greek yoghurt and berries or eggs.
How long after breakfast did you test?
Have you been given any means to test for ketones in your urine (dip sticks) if not it would be wise to buy some fairly cheap from the pharmacy so if you get high blood glucose then you should test for ketones. I'm not sure what level you should check but certainly I think if approaching 20mmol/l
Have you been given any advice about restricting carbohydrates while waiting for a confirmed diagnosis.
 
Hi again. Sorry to hear you are feeling rough and haven't been started on insulin yet. I think many of us had the same route with Glic. As others have said, your breakfast was quite high carb and low GI is a concept which not all our digestive systems subscribe to. My body can get the glucose from breaking down porridge from my mouth to my finger tip in 20 mins, which I find absolutely amazing but definitely not slow release when you consider sugar takes 10 mins.

I was initially assumed to be Type 2 and determined that I was going to try to beat my diabetes into submission so I followed a very low carb diet in the early weeks and that did bring down my levels below 10 because it enabled my remaining beta cells to catch up by reducing my need for insulin, so they could work on producing enough to try to clear the back log of glucose in my blood without putting too much more in, so I started feeling quite a bit better before insulin, but yes you will return to feeling mostly "normal and well" once your BG levels are under better management, but there will be times when they drop too low or go too high despite your best efforts and you will feel a bit naff then.

I think one of the things I didn't realise in those early days was that hypos are much much more common than I ever expected. I kind of assumed they were maybe once or twice a year events, when in reality they are an almost everyday part of my lifestyle. Some people have more or less than others and there are a lot of factors which impact that and it isn't just about poor diabetes management. The thing I find is that the more I have, the less daunting they are and the more confident I become in dealing with them and the easier they are to manage. The fear and panic is sometimes more debilitating than the actual hypo, so if you can overcome that, I think it is helpful. Most of the time I can eat a jelly baby or 2 and just continue what I am doing, even if it is quite physical. Other times I need 10 mins to sit down and recover. If I wake up in the night low. I have jelly babies and Glucose tablets by the bed and most times I don't even need to put the light on, I can just scan my Libre, decide how many I need to take, pop them in my mouth and chew well and then go back to sleep. In reality this is bad practice as I should double check with a finger prick, eat my hypo treatment, wait 15 mins and check again and if I am over 4 then I can go back to sleep, if not, I need to eat more hypo treatment. Personally I value my sleep and I will be sound within a couple of minutes of eating the hypo treatment.
The important thing is that there is plenty of sweet stuff by the bed and my test kit is within reach so I don't have to get up when I am groggy with sleep and hypo brain and wander round the house looking for what I need.

Anyway, what I am saying is that planning and having everything you may need close to you all the time is a key element of managing diabetes and keeping yourself safe. Never leave the house without hypo treatment and ideally testing kit. My insulin also goes everywhere with me and I keep it all in a little back pack with my Libre scanner and phone which I can walk or run with or ride my horses or it sits next to the bed at night or goes out socially with me or shopping. I feel naked without my back pack now. It is a bit like not putting your seat belt on in a car... it feels like there is something missing and you don't feel quite safe.

Anyway. Hope you have a good trip away and get started on insulin when you come back. I think that is a wise decision in the circumstances. Once your levels come down that fatigue will go and you will feel so much better.
 
Oh, forgot to answer your question about what sort of level you should seek medical advice.... Persistent high 20s or above would be the time to ask for more immediate support. I am guessing they may not have given you Ketostix as correctly mentioned by @Leadinglights. If there is a suspicion you are Type 1 then there is a risk that high BG levels can cause the build up of ketones which cause your blood to become toxic. You may have heard of the term DKA or Diabetic Ketoacidosis. This is the other end of the scale to hypos and can lead to coma organ failure and very rarely death, so it is something else that we need to be aware of and sometimes monitor. Urine dipsticks are the cheapest and easiest option and you should test for Ketones when your BG levels are persistently above 14. So this morning you were 12.4 but then went up to 16 after breakfast. I wouldn't test for ketones at that stage but if my levels were still above 14 at lunchtime, then I would test next time I had a wee. There is a colour comparison chart of the Ketostix tube and you compare the colour of the dipped stick after 15 seconds. If you get a reading above 1mmol for ketones you need to seek medical advice and start drinking plenty of water to help flush your system. Ketones can build up quite rapidly once they start if you can't lower your BG levels and drinking water or injecting insulin would be 2 of the 3 effective ways. Walking would be the third but best not to stray too far from home if ketones are developing. Anyway, that is my take on things. Thankfully I have no personal experience of DKA and very much hope to keep it that way!

PS> You can buy Ketostix over the counter in a pharmacy for about a fiver and if you haven't been prescribed any, then either chase it up with your GP if you have time before you go away or go out and buy some. Again, it is all part of keeping yourself safe.
 
It's so confusing, I did a blood test before breakfast, and it was 12.5, did one just now (I took my tablet with breakfast), and its rocketed to 16.4.

All I had was fruit and fibre! Is there a point when your blood sugar gets so high you need to seek more urgent help? My Hba1c from my last proper blood test was 80.

All these different units are pretty confusing.

If you’re Type 1, you need to watch out for ketones as mentioned above because too high a level can be dangerous. If you haven’t been informed about this by your doctor or whoever diagnosed you, that’s very poor.

If your blood sugar stays in the high teens or higher, I’d seek medical advice. But do get some Ketostix. When does your staycation end?

Just to be clear, Fruit and Fibre isn’t high carb. It’s not the Fruit and Fibre’s fault - it’s the fact you don’t have insulin, if you are Type 1, that’s the issue. Type 1s, once they get the insulin they need, can eat the same normal healthy diet recommended for everyone. All we have to do is ‘be our own pancreas’ and inject the correct amounts of insulins. It’s harder than that sounds, but that’s the basic theory.

This is what I had for breakfast - a big bowl of granola and All Bran plus milk. 2hrs after breakfast my blood sugar was 6.2. This is simply because I have insulin. There is nothing at all wrong with cereal or any carbs. Type 1 is an auto-immune condition and very different from Type 2. Type 1s can eat pretty normally - with insulin.
 
If you’re Type 1, you need to watch out for ketones as mentioned above because too high a level can be dangerous. If you haven’t been informed about this by your doctor or whoever diagnosed you, that’s very poor.

If your blood sugar stays in the high teens or higher, I’d seek medical advice. But do get some Ketostix. When does your staycation end?

Just to be clear, Fruit and Fibre isn’t high carb. It’s not the Fruit and Fibre’s fault - it’s the fact you don’t have insulin, if you are Type 1, that’s the issue. Type 1s, once they get the insulin they need, can eat the same normal healthy diet recommended for everyone. All we have to do is ‘be our own pancreas’ and inject the correct amounts of insulins. It’s harder than that sounds, but that’s the basic theory.

This is what I had for breakfast - a big bowl of granola and All Bran plus milk. 2hrs after breakfast my blood sugar was 6.2. This is simply because I have insulin. There is nothing at all wrong with cereal or any carbs. Type 1 is an auto-immune condition and very different from Type 2. Type 1s can eat pretty normally - with insulin.

'Just to be clear, Fruit and Fibre isn’t high carb'
Do you not think 75g carb /100g is not high carb ?
 
The serving size is 40g=28g carbs. But all this is irrelevant as if the OP is Type 1 they need insulin. I’m Type 1 and I could eat lettuce all day, but if I didn’t take my insulin, my blood sugar would soar, even with the very low carb lettuce.

Far too many Type 1s have eating issues of some sort, and making out, even implicitly, that there’s something bad about a bowl of cereal is wrong.
 
You eat a 100g bowl of F&F, do you??
Don't even go near it.
15g of Lizi's low sugar granola (45g carb per 100g) or Keto Hana granola (9.2g carb per 100g) I could have a whole 100g of that, if I took a second mortgage.
 
I understand what you are trying to say @Inka because you are concerned about getting into a mentality that all carbs are bad or that Type 1s need to limit carbs which is not the case once you have insulin to balance it but I think it is misleading to say that Fruit and Fibre is not a high carb food because it is.
Portion size is irrelevant because using that logic, if a portion of sugar is just 1 teaspoon, sugar would also not be a high carb food, which is clearly nonsense. The whole premise of carb restriction with type 2 diabetes is that portion control of high carb foods needs to be managed and restricted, so we would suggest a very small, perhaps half portion of Fruit and Fibre to see how a person coped with that or probably recommend choosing lower carb foods which would allow a bigger portion.

At the moment the OP does not have a formal diagnosis of Type 1 and was querying why their levels shot up after breakfast and it is because they ate a carb rich food and have no insulin to balance it.,,, and at 69g/100g carbs according to the info I found, Fruit and Fibre is high carb. Yes the total amount of carbs might be just 30-35g carbs with milk if they weighed out the recommended portion but we all know that without weighing, almost everyone uses larger portions.
 
The serving size is 40g=28g carbs. But all this is irrelevant as if the OP is Type 1 they need insulin. I’m Type 1 and I could eat lettuce all day, but if I didn’t take my insulin, my blood sugar would soar, even with the very low carb lettuce.

Far too many Type 1s have eating issues of some sort, and making out, even implicitly, that there’s something bad about a bowl of cereal is wrong.
What I was trying to say was that as the OP was not yet on insulin that it was perhaps the explanation for the increase in BG when they tested.
 
@Leadinglights - Ahh, I didn't realise fruit fibre was regarded as high carb, I assumed (wrongly) it would be fairly healthy. I will look into healthier options for my breakfast. I haven't been given any info about ketones, although I have read about them, and I am going to ask the diabetic nurse (ringing me on Monday) about this subject. I haven't been given any carb diet info, just given a sheet with various foods and low/medium/high GI indicators.

@rebrascora - thanks for all your info - you are giving me a great insight into how it is to live with diabetes (although I appreciate everyone has a differing experiences).

@Inka - thanks for the info around the differences between type 1 / type 2. What you said broadly matches what I have read. My understanding is whilst diet is a part of Type 1 diabetes, it isn't the most important factor. e.g you can have a great diet and would still have elevated blood sugars

I really appreciate the info - the good news is the tablets do seem to be doing something, my blood sugar around 3pm was 10, and hit 9 before dinner.

My staycation ends on Wednesday.
 
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Ahh, I didn't realise fruit fibre was regarded as high carb, I assumed (wrongly) it would be fairly healthy. I will look into healthier options for my breakfast.
It is not that Fruit and Fibre isn't healthy, it is just that it is likely to shoot your BG levels up quite a lot without you having insulin to balance it.

What you need to understand is that all carbohydrates (sugars and starchy foods) are converted to glucose by our digestive system and absorbed into the blood stream. If your body is struggling to produce enough insulin and you don't have any to inject, then eating high carb foods will push your BG levels up because you don't have enough home produced insulin to cover the glucose that food releases. Eating low carb foods will not add very much extra glucose to your blood so your remaining beta cells have more chance of coping or reducing the surplus in your blood.
A low carb breakfast can be bacon, sausage, eggs and mushrooms and a tomato minus the bread/hash browns/toast or just a very small portion(ie half a slice of toast, or one hash brown or a few beans. This will have much less impact on your BG levels, so whilst it might seem less healthy than your Fruit and Fibre it may not be for you at the moment as it will not add to your already elevated BG levels and definitely a less problematic treat than the pudding you turned down earlier.
Some health Care Professionals have bought into (or been misinformed) that low GI works for everyone and is better for diabetics when in reality it may not be and is a lot less effective than reducing those high carb foods altogether. In this case, if you are Type 1 then it is a short term measure until you start on insulin after your holiday, when you will then learn to count carbs and adjust your insulin doses, but whilst you are away, if you have the option of a cooked breakfast and you fancy it, you will almost certainly find it doesn't spike your levels so high..... and it can make up for missing out on that dessert you were restrained enough to refuse earlier.
An omelette is another low carb option or maybe eggs Florentine if it is a posh place (poached on a bed of spinach) but go easy on the toast/bun/muffin it is served on or the same for eggs Benedict (poached with ham and cheese/hollandaise sauce). Maybe just have half the bread it is served on.
If you want a light low carb breakfast, natural yoghurt with seeds and a few berries is what many of us have.
Fruit juice would be best to avoid for now. Many people use it as a hypo treatment to bring levels up fast when they are too low.. ie it contains a lot of (natural) sugar.... just thinking of the sort of breakfast options you might have in a hotel and what you might be tempted to eat or drink.

The thing is that it doesn't matter how low GI a food is purported to be, if it contains a lot of carbs, your body will break them down and they will enter your blood stream and push your BG levels up.

As you are on holiday, you may fancy a drink and it might also be useful to know that dry wine is low in carbs as are spirits with or without a diet mixer but beer and cider and sweet wine/port and liqueurs are higher carb, so if you fancy an occasional drink, those lower carb options will have much less impact on your levels.

I would like to reiterate that if you are Type 1, this need only be a short term stop gap measure to keep your levels reasonable under control until you get insulin and learn to balance it. I just wanted you to know that it doesn't have to be all restraint and that there are things you can treat yourself to, once you understand the type of foods which will inflate your BG levels and the ones which wont. Basically things made with grains and sweet or starchy root veg and fruit will but protein and fat to a much lesser extent.

Hope you enjoy breakfast in the morning. 😉
 
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