Another newbie looking to understand

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Beth12395

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Hi guys and girls!

I’ve very very recently being diagnosed with diabetes, I was diagnosed with type 2 initially but now they’re looking down the route of a potential type 1 diagnosis.
I’m monitoring my bloods this week and they’re always high above 10mmol/L.
I am overweight, which has most likely triggered the type 2 (if that is my diagnosis).
I initially didn’t have a blood monitoring machine, but have just been given one since the potential of type 1.
I eat somewhat healthy 3 meals a day, proteins, carbs and veg. And have recently started on metformin. My bloods on a morning are high treading between 15-16 mmol/L and in an afternoon come down to around 11-12mmol/L
I guess I’m wondering what other people’s readings have been when they were first diagnosed, and if so what type are you? I’m eager to find out so I can make the right choices to get my sugars right, and I’m also very nervous and scared to find out my final diagnosis.

I guess I’m trying to work out although they’re high where I stand
I hope this makes sense because I am so confused!

Thanks,
Beth
 
Welcome to the forum
You say 'the potential' to be Type 1, can I ask why is that suggested and have you had the blood tests which would confirm what Type you might be.
Presumably the metformin is a stop gap measure. What was your HbA1C as if very high the reading you are getting from your monitor would be consistent with that. Diagnosis is usually from the HbA1C result not finger prick tests as they will vary depending on many factors, most particularly when the test is taken in relation to eating.
Random testing is not very informative and people tend to adopt a testing regime depending on what information they are trying to get.
For people who are Type 2 testing first thing in the morning (in bed) will give a fasting reading useful for checking day to day, week to week progress.
Testing before eating and 2 hours after to check your individual tolerance to the meal you have just eaten. An increase of no more than 2-3mol/l would suggest the meal is OK
Testing if you feel unwell is also a good idea.
However if there is question over your diagnosis then your GP may want more testing eg before bed.
It is also useful to keep a food diary with everything you eat and drink with an estimate of the carbohydrates along side your blood glucose readings as this will provide evidence as to how your body tolerates carbs to support any diagnosis.
 
Hi and welcome Beth.

Sorry to hear about your diagnosis but I am pleased that you have found the forum because it really is a gold mine of knowledge and shared practical experience. It has been my mainstay of support and learning since I was diagnosed neary 5 years ago and like yourself I was initially thought to be Type 2 but had a borderline C-peptide test but a positive GAD antibody test which confirmed me as Type 1. Have they done these tests for you? It takes about 6 weeks for the antibody test results to come back so there can be what seems to be a long period of uncertainty until you get a definitive diagnosis. If they haven't done these tests then it would be reasonable to ask why not when there is a question mark over you possibly being Type 1.

Have they given you any means of testing for ketones? Ketostix to dip in your urine perhaps? If not it would be a good idea to ask for some, especially as you are waking with levels in the mid teens as that is when ketones are at risk of developing and becoming a problem, particularly if you are Type 1.

It is a bit difficult to compare readings as during the first 6 weeks before I was started on Insulin, I went very low carb..... hoping to put it into remission if I was Type 2. I managed to get my readings down into single figures in the 5th week by doing this, so I wasn't eating bread or potatoes or rice or pasta or breakfast cereal and very little fruit, just a few berries. My breakfast porridge was the last thing to be relinquished and I managed to get a reading below 7 but I was losing weight at a scary rate by then and they started me on insulin in the 6th week. I still follow a low carb way of eating because it turns out it really suits me but I eat more fat now (which I enjoy) to keep my weight stable.

It is interesting that your waking readings are the highest. Can I ask when you test them? Just wondering if it is when you first wake up and before you get out of bed or after you have got up and got washed and dressed and perhaps half an hour later because that can make a huge difference. My levels can rise 6mmols from waking to half an hour later due to what is known as Dawn Phenomenon or Foot on the Floor Syndrome, where your liver pumps out glucose to give us energy for the day ahead, but with a failing pancreas, it doesn't get the message or can't produce enough insulin to match that glucose so levels rise sometimes quite dramatically. It supposedly stems back to prehistoric days when we needed energy (glucose) to hunt or gather our first meal of the day, whereas walking into the kitchen and opening the fridge and cupboards takes very little glucose by comparison to hunting down a wooly mammoth! If you are overweight then there may also be a bit of insulin resistance, so your body doesn't respond as promptly to the insulin you do produce meaning your levels go up.
Food hitting the stomach can sometimes stimulate the pancreas to produce/release insulin more effectively than BG levels rising from liver output, so that might be why levels are better through the day. Will be interested to know when you do your morning test as to how that ties in. Might be worth experimenting with testing as soon as you wake up and still in bed if you don't already.
 
Leadinglights said:
Welcome to the forum
You say 'the potential' to be Type 1, can I ask why is that suggested and have you had the blood tests which would confirm what Type you might be.
Presumably the metformin is a stop gap measure. What was your HbA1C as if very high the reading you are getting from your monitor would be consistent with that. Diagnosis is usually from the HbA1C result not finger prick tests as they will vary depending on many factors, most particularly when the test is taken in relation to eating.
Random testing is not very informative and people tend to adopt a testing regime depending on what information they are trying to get.
For people who are Type 2 testing first thing in the morning (in bed) will give a fasting reading useful for checking day to day, week to week progress.
Testing before eating and 2 hours after to check your individual tolerance to the meal you have just eaten. An increase of no more than 2-3mol/l would suggest the meal is OK
Testing if you feel unwell is also a good idea.
However if there is question over your diagnosis then your GP may want more testing eg before bed.
It is also useful to keep a food diary with everything you eat and drink with an estimate of the carbohydrates along side your blood glucose readings as this will provide evidence as to how your body tolerates carbs to support any diagnosis.
Click to expand...
Thank you!
It seems I’ve fallen good finding this gem there seems to be a lot of knowledge on here!
I say the potential as the dr/hospital aren’t 100% sure, the last nurse I spoke to on Friday had initially called me in thinking I was type 1, (I’d already had a type 2 diagnosis at this point.)
So they rushed me in to start insulin, but when I got there and they asked me about symptoms and so on, and my symptoms don’t match with type 1. This is then why they’ve started me on metformin, they did take another set of bloods (this is the 4th time they’ve taken bloods to be tested). I won't find out until Wednesday the results of that blood test but I do have a call scheduled. HbA1C I’m not sure what this is, it’s all very new to me and I guess I am just starting to try to understand everything, so far they haven’t actually told me the level of the actual tests, they’ve just said I’m diabetic type 2 and all of a sudden type 1.
They’ve got me testing on a morning before breakfast and on an evening before tea for now until Wednesday I am presuming where they will advise on the next steps pending my blood work coming back.
I will 100% give it a try in bed and see if that might make a difference as I have been doing it once up and dressed and so on!
I don’t ever feel unwell, I have no symptoms at all. No tiredness, needing to wee more or thirst, so it’s all been a slight whirlwind lol!
I know I should just be patient really and see what happens but the wait is stressing me out!
Thank you so much for your reply!! You’ve deffo given me some bits to ask when they come back to me!
 
Welcome to the forum @Beth12395

While I understand your natural desire to get an idea of the general ‘lay of the land’ I think it might perhaps be more confusing than helpful, because each diagnosis is a sort of unique event.

For me, I was in my early 20s and had lost a lot of weight. I believe I had already lost a lot of insulin production (probably the majority). BGs were measured rather less precisely then, but I think mine were noted as around 35-39mmol/L, with +++ ketones - raging thirst, weight loss, soooo tired, and weeing for England!

But diabetes can come on more slowly in later adulthood, and we have members of the forum whose BGs have risen over weeks and months (sometimes even years) before their T1 (LADA) became clear.

Hope you get some clarity about your type soon. Mostly it’s the clinical presentation which gives the clearest indication, though sometimes antibody and cPeptide checks can help.
 
rebrascora said:
Hi and welcome Beth.

Sorry to hear about your diagnosis but I am pleased that you have found the forum because it really is a gold mine of knowledge and shared practical experience. It has been my mainstay of support and learning since I was diagnosed neary 5 years ago and like yourself I was initially thought to be Type 2 but had a borderline C-peptide test but a positive GAD antibody test which confirmed me as Type 1. Have they done these tests for you? It takes about 6 weeks for the antibody test results to come back so there can be what seems to be a long period of uncertainty until you get a definitive diagnosis. If they haven't done these tests then it would be reasonable to ask why not when there is a question mark over you possibly being Type 1.

Have they given you any means of testing for ketones? Ketostix to dip in your urine perhaps? If not it would be a good idea to ask for some, especially as you are waking with levels in the mid teens as that is when ketones are at risk of developing and becoming a problem, particularly if you are Type 1.

It is a bit difficult to compare readings as during the first 6 weeks before I was started on Insulin, I went very low carb..... hoping to put it into remission if I was Type 2. I managed to get my readings down into single figures in the 5th week by doing this, so I wasn't eating bread or potatoes or rice or pasta or breakfast cereal and very little fruit, just a few berries. My breakfast porridge was the last thing to be relinquished and I managed to get a reading below 7 but I was losing weight at a scary rate by then and they started me on insulin in the 6th week. I still follow a low carb way of eating because it turns out it really suits me but I eat more fat now (which I enjoy) to keep my weight stable.

It is interesting that your waking readings are the highest. Can I ask when you test them? Just wondering if it is when you first wake up and before you get out of bed or after you have got up and got washed and dressed and perhaps half an hour later because that can make a huge difference. My levels can rise 6mmols from waking to half an hour later due to what is known as Dawn Phenomenon or Foot on the Floor Syndrome, where your liver pumps out glucose to give us energy for the day ahead, but with a failing pancreas, it doesn't get the message or can't produce enough insulin to match that glucose so levels rise sometimes quite dramatically. It supposedly stems back to prehistoric days when we needed energy (glucose) to hunt or gather our first meal of the day, whereas walking into the kitchen and opening the fridge and cupboards takes very little glucose by comparison to hunting down a wooly mammoth! If you are overweight then there may also be a bit of insulin resistance, so your body doesn't respond as promptly to the insulin you do produce meaning your levels go up.
Food hitting the stomach can sometimes stimulate the pancreas to produce/release insulin more effectively than BG levels rising from liver output, so that might be why levels are better through the day. Will be interested to know when you do your morning test as to how that ties in. Might be worth experimenting with testing as soon as you wake up and still in bed if you don't already.
Click to expand...
Hey!! Thank you so much for your reply!

I do feel as though I’ve found a great place full of knowledge just reading some of these forums! It’s great! They haven’t done those tests for me i don’t think, but then I’m not 100% sure as they’ve just stolen my blood and that’s been that they took my bloods 4 times so far, originally after the first 3 tests they told me I was type 2 but I got a call out of the blue from the hospital telling me I was type 1 and to get booked in asap, so when I went and discussed with the nurse she spoke to another nurse and a consultant and as I wasn’t having any symptoms they decided to send me away with nothing for type 1, but metformin and a finger pricker to keep tabs for the week. They did take my bloods again and they’re due to come back on Wednesday so it’s keeping track of them until then and seeing where to go.

Yes they did give me the ketone readers too! Because I read over 15 and did in the hospital in the morning I have to check them every time I read over 15 so far they’ve only been 0.2 which she said is good so fingers crossed lol.

I do think I’m going to give it a go checking when in bed as I’ve been getting up and about before so this might be why they’re so high! That makes sense!!!

My diet she said is sensible, but I do eat carbs with every meal so even if I am type 2 I think I may work on reducing them from my diet or cutting back a lot! It couldn’t hurt to shed a bit of timber too! So I guess I could look at that as a perk of a diet change

I will 100% be asking what tests have been done and what came back for what, because I am very intrigued now!

I love how knowledgeable and nice people seem to be on this forum! I’m so thankful I’ve found it!

Thank you so much!! 🙂
 
everydayupsanddowns said:
Welcome to the forum @Beth12395

While I understand your natural desire to get an idea of the general ‘lay of the land’ I think it might perhaps be more confusing than helpful, because each diagnosis is a sort of unique event.

For me, I was in my early 20s and had lost a lot of weight. I believe I had already lost a lot of insulin production (probably the majority). BGs were measured rather less precisely then, but I think mine were noted as around 35-39mmol/L, with +++ ketones - raging thirst, weight loss, soooo tired, and weeing for England!

But diabetes can come on more slowly in later adulthood, and we have members of the forum whose BGs have risen over weeks and months (sometimes even years) before their T1 (LADA) became clear.

Hope you get some clarity about your type soon. Mostly it’s the clinical presentation which gives the clearest indication, though sometimes antibody and cPeptide checks can help.
Click to expand...
Hey!!
Thank you so much,
I did kind of figure this may have been the case as I couldn’t find much online for reading etc just what it should be.

It’s so nice to hear people’s stories of how they found out and how much they vary, although not nice because no one wants the diagnosis!

I don’t have any symptoms whatsoever so the swift change was a curveball, it’s sent me in a slight researching frenzy. I guess any research is good to do though so it’s not all bad!

Hopefully I get some clarification through the hospital and I can start to learn how to attack my diet and lifestyle then depending on that!
There is so much to learn regardless of type 1 and type 2, there’s information in abundance, I’m just happy I’ve found this forum where there are likeminded people going through similar situations, because I’m sure I’ll be doing some brain picking and eventually answering and helping I hope lol!

Thank you so much for replying!
 
The test that you are doing with your monitor is essentially your blood glucose level at that moment in time and will vary depending on all sorts of things but mainly the carbohydrates you have eaten and when but also any exercise you do even walking. The result is in mmol/l.
The test to diagnose diabetes is the HbA1C test which is the average blood glucose over the previous 3 months and a level over 47mmol/mol would give a diagnosis, it does not distinguish between Type 1 and Type 2, the indicators are often clinical symptoms such as very high HbA1C, thirst, frequent loo visits and rapid loss of weight which would be more likely to indicate Type 1. Additional tests would need to be done to confirm Type 1 those being c-peptide and GAD antibodies, those usually need special processing of the samples and results will often take several weeks to come back as not many labs do those tests.
If you are confirmed as Type 2 then metformin together with reduction in carbohydrates will often enable people to reduce their HbA1C however if you are Type 1 then insulin will be needed and then in theory you should be able to eat a normal healthy diet.
Anyway gather as much information as you can from your readings and keeping a food diary with an estimate of the amount of carbs you have will give some evidence for your nurse/doctor.
 
Leadinglights said:
The test that you are doing with your monitor is essentially your blood glucose level at that moment in time and will vary depending on all sorts of things but mainly the carbohydrates you have eaten and when but also any exercise you do even walking. The result is in mmol/l.
The test to diagnose diabetes is the HbA1C test which is the average blood glucose over the previous 3 months and a level over 47mmol/mol would give a diagnosis, it does not distinguish between Type 1 and Type 2, the indicators are often clinical symptoms such as very high HbA1C, thirst, frequent loo visits and rapid loss of weight which would be more likely to indicate Type 1. Additional tests would need to be done to confirm Type 1 those being c-peptide and GAD antibodies, those usually need special processing of the samples and results will often take several weeks to come back as not many labs do those tests.
If you are confirmed as Type 2 then metformin together with reduction in carbohydrates will often enable people to reduce their HbA1C however if you are Type 1 then insulin will be needed and then in theory you should be able to eat a normal healthy diet.
Anyway gather as much information as you can from your readings and keeping a food diary with an estimate of the amount of carbs you have will give some evidence for your nurse/doctor.
Click to expand...
Thank you so much,
I will start keeping tabs so i can relay that information, all they’ve said is my bloods are high so I’ll deffo be asking for exact figures and take a pen and paper lol!

I’ll see if they’ve sent off for those tests and see what information I can get.

It’s a lot to take in isn’t it! So much happening and so much to learn!
 
It is a lot to take in. It's almost like learning a new language with all the tests and terminology and diabetes is very complex whether you are Type 1 or Type 2 or one of the rarer types (yes there are more!). I found it helpful to make a list of things I wanted to ask prior to any appointments (in fact I still do this) as appointments are short and of course the medical professionals have lots of questions they want to ask about you, so it is easy to get distracted and come away with 2 or 3 questions that just got lost in the conversation, so having them written down and ticking them off is helpful.
On the whole, it sounds like you have a really positive attitude though and that will take you a long way in managing your diabetes well. If you have any other questions do feel free to ask and let us know if testing before you get up gives you a lower reading.
 
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