Newly diagnosed

[LynsK]

I honestly don’t know where to start.
About 2 weeks ago I went to the doctors for another health condition she tested my water and blood and said they were both very high put me straight on to gliclazide and ordered Hc1a test and referred me to diabetic clinic
Wishing 24hrs if the blood test she called me and said my bloods where “87”
So my first question is what does this miner mean?
Fast forward a week of glucose testing and even the maximum gliclazide wasn’t reducing my blood sugars I was between 15/20 each time?
So now I’m on insulin 4 times per day and I’m averaging 11/15 blood glucose?
My bloods have been sent off as they don’t know which type I am yet and I’ll be waiting around 2 months for this.
I’ve asked if I can reverse this if I am type 2 but they seem to think not I have a very active job walking between 7-9 miles per day and for now I’ve been advised to take some time off.
I’m shocked confused and completely overwhelmed by it all I just can’t seem to accept it’s real.

 

[plantae]

Welcome to the forums @LynsK

Being newly diagnosed myself (end of October last year) I can understand you feeling overwhelmed, shocked and confused. I was. I still am.

I don't know what the 87 means. This page may help: https://www.diabetes.co.uk/what-is-hba1c.html

When you say 11/15 blood glucose do you mean 11-15 mmol/L? If so, when are you 11-15 mmol/L? Also, how are you measuring this and what types of insulin are you on?

MY type of diabates cannot be reversed, but it can be managed

 

[EllieM]

Wishing 24hrs if the blood test she called me and said my bloods where “87”
So my first question is what does this miner mean?

87 will almost certainly be your hba1c, which is a measure of your average blood sugars over the last 3 months. 87mmol/mol corresponds to an average bg (blood glucose) of 13.5mmol/L

If you're in the UK then hba1cs of 48 or more normally count as diabetic, so you are well into the diabetic range, which is probably why you are currently on insulin after the gliclazide didn't work.

Though your blood sugars are still high, it's pretty normal for doctors to increase insulin doses gradually, partly because overdosing on insulin causes hypoglycemia which can be very dangerous, At this stage they genuinely don't know how much you need.

Has your diabetic team given you instructions on what to do if your blood sugar goes too low? And on how to adjust your doses?

Though if you have T1 it isn't curable by diet, there is some excellent tech out there which should allow you to go back to your normal way of life once you've got the hang of insulin: continuous glucose monitors mean you can have your blood sugar levels continuously sent to your phone. Can't comment much on the T2 options so I'll leave that to others.

Try not to panic, in the long run you will get the hang of this whichever type of diabetes you have. In the short term you may have a bit of a steep learning curve.

And my single piece of advice to all new insulin users. Always keep something sugary with you so that you can treat unexpected hypos.

Good luck and welcome to the forums

 

[JoKalsbeek]

I honestly don’t know where to start.
About 2 weeks ago I went to the doctors for another health condition she tested my water and blood and said they were both very high put me straight on to gliclazide and ordered Hc1a test and referred me to diabetic clinic
Wishing 24hrs if the blood test she called me and said my bloods where “87”
So my first question is what does this miner mean?
Fast forward a week of glucose testing and even the maximum gliclazide wasn’t reducing my blood sugars I was between 15/20 each time?
So now I’m on insulin 4 times per day and I’m averaging 11/15 blood glucose?
My bloods have been sent off as they don’t know which type I am yet and I’ll be waiting around 2 months for this.
I’ve asked if I can reverse this if I am type 2 but they seem to think not I have a very active job walking between 7-9 miles per day and for now I’ve been advised to take some time off.
I’m shocked confused and completely overwhelmed by it all I just can’t seem to accept it’s real.

You're starting with a HbA1c which is close to what I started with, and they've put you on glic and insulin already? Putting the cart before the horse a bit. Gliclazide makes your pancreas churn out more insulin, it didn't make a dent at all? How is the insulin working for you? (Two months for a GAD and C-Peptide is a long time... But I don't know what the NHS is coping with now, bein gin the Netherlands myself). Is there any reason other than the hight of your blood sugars why they might think you might be a T1? Did you lose weight awfully fast without trying for instance? Did thirst and excessive weeing come on overnight?

Have you done anything to your diet since diagnosis? What are you eating throughout the day? (Be as specific as possible) Carbs turn to glucose when ingested, so it's sugars as well as starches which will raise blood sugars. (That doesn't mean you have to cut them out right now, as you're on insulin and can potentially hypo!). It's stuff to look into before you make any changes. This might explain the basics of T2 some, but it doesn't fly with T1, and as that's still on the table, just take it as a bit of education, not as advice right now. Like I said, you might hypo with your current insulin regime, and you don't know your type yet. https://josekalsbeek.blogspot.com/2019/11/the-nutritional-thingy.html

I'll not be on here as much as I'd want to be, but the answers to these questions'll help other people respond here too.
Be good to yourself eh.
Jo

 

[LynsK]

Thank you everyone for your reply and advise
Yes the thirst and excessive peeing did come on quickly
I think because of my active job (I’m a post woman) they went straight in with medication
I loads a small amount of weight but I only realised through my clothes rather than the scales but not a massive amount I’m very too heavy I have a slim legs and no bum but big boobs and a belly!
You seem to have said the same as my diabetes nurse try not to worry and take too much in until we have your results
I had meningitis a couple of years ago (viral) also had covid 3 times so they don’t know if thats what caused it. I’ve been under a lot of stress to the last few years I’ve had a really tough time so I’m wondering if this has affects my ability to produce insulin?
The gliclazide did absolutely nothing however the insulin has brought it down slightly so maybe this needs increasing to be within a normal level
I have yet to experience a hypo thank god.
Also do I need to inform the DVLA now or wait till I get my actual type? If it’s type 2 I’m hoping I can get off this insulin x

 

[catinahat]

Also do I need to inform the DVLA now or wait till I get my actual type?

The DVLA are not interested in what type you are, only if you are taking insulin or any other drugs that can cause low blood sugar.
There are also rules about testing before you drive and during any long journeys. Low blood sugar could seriously affect your ability to drive safely. So yes you need to inform them and check out the rules for testing, all the info you need should be on their website.

 

[Outlier]

IF you are confirmed as diabetic you also have to tell your car insurance people. They won't need to do anything but they do need to know to keep your insurance valid.

 

[JoKalsbeek]

Thank you everyone for your reply and advise
Yes the thirst and excessive peeing did come on quickly
I think because of my active job (I’m a post woman) they went straight in with medication
I loads a small amount of weight but I only realised through my clothes rather than the scales but not a massive amount I’m very too heavy I have a slim legs and no bum but big boobs and a belly!
You seem to have said the same as my diabetes nurse try not to worry and take too much in until we have your results
I had meningitis a couple of years ago (viral) also had covid 3 times so they don’t know if thats what caused it. I’ve been under a lot of stress to the last few years I’ve had a really tough time so I’m wondering if this has affects my ability to produce insulin?
The gliclazide did absolutely nothing however the insulin has brought it down slightly so maybe this needs increasing to be within a normal level
I have yet to experience a hypo thank god.
Also do I need to inform the DVLA now or wait till I get my actual type? If it’s type 2 I’m hoping I can get off this insulin x

Well, you really could go both ways. It came on suddenly, which could be indicative of Type 1. But when weight isn't distruibuted evenly and is mainly found in the gut area, that could mean odds in favour for T2. The insulin not doing a whole lot could be because you're not at your final dosage yet, but could also be because of insulin insensitivity, which is another vote for T2. Thing is, a T1 doesn't make a whole lot of insulin due to an autoimmune condition that attacks the pancreas and just damages the output until there is basically none left. A T2 makes massive amounts of insulin, but has become insensitive to it. Sadly, throwing even more insulin at it, makes the insensitivity worse, so I'm hoping you'll have answers soon that you can work with.

If it's a T1 problem, then it's insulin jabs, period. You wouldn't be able to live without it, as the pancreas quits entirely after a certain amount of time. If it's T2, there's no reason you can't re-train your body to get more sensitive to the insulin you yourself produce. As long as you don't know which is which, (and I still think months to wait is rediculous!), just remember this: Either way, you can be treated. There's more types than one and two, (lada, mody, T3c etc), but any type can be dealt with, as demonstrated by our many members.

As for the DVLA, I don't drive myself, but I think if you're on insulin, they have to know. Test before you drive anywhere. It's "five to drive". If you're under that, get your blood sugars up some, because insurance might give you a hard time if you went behind the wheel relatively low.
Hugs,
Jo

 

[LynsK]

Well, you really could go both ways. It came on suddenly, which could be indicative of Type 1. But when weight isn't distruibuted evenly and is mainly found in the gut area, that could mean odds in favour for T2. The insulin not doing a whole lot could be because you're not at your final dosage yet, but could also be because of insulin insensitivity, which is another vote for T2. Thing is, a T1 doesn't make a whole lot of insulin due to an autoimmune condition that attacks the pancreas and just damages the output until there is basically none left. A T2 makes massive amounts of insulin, but has become insensitive to it. Sadly, throwing even more insulin at it, makes the insensitivity worse, so I'm hoping you'll have answers soon that you can work with.

If it's a T1 problem, then it's insulin jabs, period. You wouldn't be able to live without it, as the pancreas quits entirely after a certain amount of time. If it's T2, there's no reason you can't re-train your body to get more sensitive to the insulin you yourself produce. As long as you don't know which is which, (and I still think months to wait is rediculous!), just remember this: Either way, you can be treated. There's more types than one and two, (lada, mody, T3c etc), but any type can be dealt with, as demonstrated by our many members.

As for the DVLA, I don't drive myself, but I think if you're on insulin, they have to know. Test before you drive anywhere. It's "five to drive". If you're under that, get your blood sugars up some, because insurance might give you a hard time if you went behind the wheel relatively low.
Hugs,
Jo

Thank you Jo it makes sense I’ve always had a wobbly gut really
I think the 6-9 week wait is stupid to I feel like I’m in limbo!! X

 

[CatsFive]

This diagnosis is a huge shock, as you will see from other posts. And unfortunately the body shape you have is a higher risk for diabetes.

Next time you speak to the nurse or doctor and they give you numbers, ask them what the test was, and what units the numbers are in. If the test is an HbA1C it's giving an average of your blood glucose over the past 2-3 months. That's because that's how long red blood cells live, and they are looking at glucose stuck to them.

On the subject of diet, sorry if I'm stating the obvious. Try to get rid of sugar in all forms - added to drinks, in canned food, in sweeties, in puddings, in cakes... Sounds depressing. Start reading labels - any ingredient ending in 'ose' is a sugar of some sort, and will get metabolised to glucose. Honey, syrup & so on taste better than sugar but aren't any better from the blood glucose point of view.

Try to up your intake of fruit & veg & reduce starchy foods - pasta, rice, cous cous, break, potatoes. Also brown pasta causes less of a spike of blood glucose than white, ditto with rice though I thought brown rice was horrible!

If your job involves driving then being on insulin is an issue, but as you walk a lot I can't see that suddenly reducing that will be helpful. If you are off work try to go for an hour's brisk walk each day, or more. But always take some form of glucose with you.

Finally if you are in Scotland get signed up for 'My Diabetes My Way'. It's a horrible name, but a good website that gives you access to a lot of your medical data. https://patient.mydiabetesmyway.scot.nhs.uk/ I have no idea if there's an equivalent in England and/or Wales.

 

[LynsK]

Thank you
I know I said too heavy but not massively if that makes sense? I’m 5ft 5in and 12 stone so I am over weight and I wear a size 14 I’ve always had big boobs and 3 children has given me the wobbly belly x

 

[JoKalsbeek]

Thank you
I know I said too heavy but not massively if that makes sense? I’m 5ft 5in and 12 stone so I am over weight and I wear a size 14 I’ve always had big boobs and 3 children has given me the wobbly belly x

There's such a thing as TOFI, Thin Outside, Fat Inside: not all T2 diabetics are grossly overweight. Some skinny people have livers marbled with fat, the stuff packed on their pancreas, and not outwardly visible without an ultrasound. So just being slightly overweight, or rather, a little unevenly spread out, especially in the rump area, could be just enough to make your pancreas struggle a bit more. (I'm Dutch and have no clue about stones and feet, sorry!) Mind you, people usually gain weight because they're insulin resistant in the first place. You can't burn glucose as the insulin isn't doing it's job, so the body just stores it in fat cells instead. People always assume a T2 eats their way into an obesity induced diabetic condition, but it's the diabetes that causes the weight gain. It's just a bit of a vicious circle. Insulin resistance? More fat. More fat? More insulin resistance. It's a cycle that could do with breaking.

 

[b1505]

I’m in the same position as you, had a urine test for another condition where the doctor found high level of glucose and ketones. Had several tests in the last couple of weeks and I was diagnosed as diabetic on Wednesday, but they’re also unsure of what type I am.
My HBA1C was 110 so extremely high, for now they’re treating me as type 2 until they get the results back.
I was given Gliclazide and Metformin, within a day I’d had the Gliclazide dose doubled due to my ketone level rising.

I’m completely with you in terms of being overwhelmed, shocked and confused. I’ve not had a single symptom and even the doctors/nurses I’ve seen are all as equally confused by me!

Hope you’re doing okay, I know for me I’m just anxious to find out what type and hate having to wait so long.

 

[Anne84]

I’m in the same position as you, had a urine test for another condition where the doctor found high level of glucose and ketones. Had several tests in the last couple of weeks and I was diagnosed as diabetic on Wednesday, but they’re also unsure of what type I am.
My HBA1C was 110 so extremely high, for now they’re treating me as type 2 until they get the results back.
I was given Gliclazide and Metformin, within a day I’d had the Gliclazide dose doubled due to my ketone level rising.

I’m completely with you in terms of being overwhelmed, shocked and confused. I’ve not had a single symptom and even the doctors/nurses I’ve seen are all as equally confused by me!

Hope you’re doing okay, I know for me I’m just anxious to find out what type and hate having to wait so long.

Hi I have just had my result back and it was 102, doctor put me on metformin twice a day and retested after 2 weeks and I have just seen on the nhs app that it is 100 so no doubt doctor will call me Monday

 

[JoKalsbeek]

I’m in the same position as you, had a urine test for another condition where the doctor found high level of glucose and ketones. Had several tests in the last couple of weeks and I was diagnosed as diabetic on Wednesday, but they’re also unsure of what type I am.
My HBA1C was 110 so extremely high, for now they’re treating me as type 2 until they get the results back.
I was given Gliclazide and Metformin, within a day I’d had the Gliclazide dose doubled due to my ketone level rising.

I’m completely with you in terms of being overwhelmed, shocked and confused. I’ve not had a single symptom and even the doctors/nurses I’ve seen are all as equally confused by me!

Hope you’re doing okay, I know for me I’m just anxious to find out what type and hate having to wait so long.

Is there a reason for you to have ketones? By which I mean, a ketogenic diet (extremely low carb) or steroid use for another condition? If there is no reason for you to have ketones present, and your blood sugars remain high, make sure you do NOT hesitate to call for help if you start to feel nausea, confusion, a bit wobbly even. While a lot of T2's strive for ketosis which keeps blood sugars at a low/normal level, there is a condition called ketoacidosis which occurs almost only in T1's (there are exceptions), and it can do a lot of harm, very, very fast. I'm surprised your doc didn't have you hospitalised when both high glucose and high ketones were found, really... Though I don't know what he/she considers high, of course. If you feel even the slightest bit off, call in the cavalry and tell them you don't know what type you are yet, but you have high blood sugars and ketones present. Not to scare you or anything, but you do need to know that sometimes, you just really do need help with something, (namely insulin, and fast) and 111 should be able to help.

Please take care of yourself and when in even a smidgen of doubt, don't hesitate to make that call. I do believe they'd rather you call ten times for naught, than once too late.

 

[JoKalsbeek]

Hi I have just had my result back and it was 102, doctor put me on metformin twice a day and retested after 2 weeks and I have just seen on the nhs app that it is 100 so no doubt doctor will call me Monday

Hello @Anne84 , and welcome

Ironically enough, almost all T2's are put on metformin straight away.... And when you read the leaflet, it says to start metformin after 3 months, if a change in diet/ lifestyle hasn't been sufficient to change anything. The thing is, Metformin increases insulin sensitivity a little, and it tells your liver not to dump too much glucose into your system when you wake in the morning, or are stressed. It does exactly nothing about what you eat, and there's the rub. Practically all carbs turn to glucose once ingested, so it's not just sugars, it's starches too... And we have a whole lot of starches in our modern diet! https://josekalsbeek.blogspot.com/2019/11/the-nutritional-thingy.html should explain a little about what you yourself can do to get back into the normal range. And yes, that is entirely possible even with a HbA1c of over 100. Because honestly... Metformin isn't going to make much of a dent in your HbA1c, as you've already found out. It helps, a little... But it's more of an aid, rather than a sole solution.

You'll be fine! They just should've given you a bit more information to go on, is all.
Hugs,
Jo

 

[b1505]

Is there a reason for you to have ketones? By which I mean, a ketogenic diet (extremely low carb) or steroid use for another condition? If there is no reason for you to have ketones present, and your blood sugars remain high, make sure you do NOT hesitate to call for help if you start to feel nausea, confusion, a bit wobbly even. While a lot of T2's strive for ketosis which keeps blood sugars at a low/normal level, there is a condition called ketoacidosis which occurs almost only in T1's (there are exceptions), and it can do a lot of harm, very, very fast. I'm surprised your doc didn't have you hospitalised when both high glucose and high ketones were found, really... Though I don't know what he/she considers high, of course. If you feel even the slightest bit off, call in the cavalry and tell them you don't know what type you are yet, but you have high blood sugars and ketones present. Not to scare you or anything, but you do need to know that sometimes, you just really do need help with something, (namely insulin, and fast) and 111 should be able to help.

Please take care of yourself and when in even a smidgen of doubt, don't hesitate to make that call. I do believe they'd rather you call ten times for naught, than once too late.

My GP did send me to A&E following the urine test (this showed the highest level of ketones) as he was worried about keto acidosis. Got tested there my blood ketones weren’t as high (the reading was 1 and she said they’d only be massively concerned if it was 3) and I was sent on my way.

I have cut down on carbs quite a bit compared to what I was having but still eating a decent amount of day. It’s interesting what you said about steroid use, would this include topical steroid too? I’ve been using that for a few months now

Luckily at no point have I felt at all unwell, but I will be mindful to call 111 should I need to. Thank you for the response

 

[JoKalsbeek]

My GP did send me to A&E following the urine test (this showed the highest level of ketones) as he was worried about keto acidosis. Got tested there my blood ketones weren’t as high (the reading was 1 and she said they’d only be massively concerned if it was 3) and I was sent on my way.

I have cut down on carbs quite a bit compared to what I was having but still eating a decent amount of day. It’s interesting what you said about steroid use, would this include topical steroid too? I’ve been using that for a few months now

Luckily at no point have I felt at all unwell, but I will be mindful to call 111 should I need to. Thank you for the response

You sound like you've got things well in hand. I do hope you have or are getting a meter so you know what your blood sugars are doing, and so you can see which meals agree with you, and which don't. I don't know what "a decent amount" of carbs comes down to, but I try to stay under 20 myself, though lately due to some issues, I've had to settle for about 30-40 grams a day. What's right for one may not be right for another, so it could well be you're all good at 150 grams, where I wouldn't be. Or if you're a T1 after all, none of what I as a T2 can say flies, and insulin is the way to go. Anyway... With your head screwed on straight, as it seems to be, you'll get through this just fine. Keep it up!
Jo

 

[b1505]

You sound like you've got things well in hand. I do hope you have or are getting a meter so you know what your blood sugars are doing, and so you can see which meals agree with you, and which don't. I don't know what "a decent amount" of carbs comes down to, but I try to stay under 20 myself, though lately due to some issues, I've had to settle for about 30-40 grams a day. What's right for one may not be right for another, so it could well be you're all good at 150 grams, where I wouldn't be. Or if you're a T1 after all, none of what I as a T2 can say flies, and insulin is the way to go. Anyway... With your head screwed on straight, as it seems to be, you'll get through this just fine. Keep it up!
Jo

I do have a meter, I’ve been asked to test 4 times a day for the first week and it’s been really interesting seeing how much it changes based on what I’ve eaten. I probably need to start tracking what I’m eating so I know just how many carbs I’m having but for now I’m just getting into the swing of things.

Thank you for the support, it’s really appreciated

 

[CatsFive]

I’m completely with you in terms of being overwhelmed, shocked and confused. I’ve not had a single symptom and even the doctors/nurses I’ve seen are all as equally confused by me!

Hope you’re doing okay, I know for me I’m just anxious to find out what type and hate having to wait so long.

If you look through posts here, being overwhelmed, shocked and confused is absolutely normal. My personal view is the key thing is to get on with doing what you need for your condition whilst coming to terms with it.

You also asked about steroid use. There is information here about this, it is mostly about oral steroids and concludes with:

Non-oral forms of steroids tend to have fewer side effects.

Steroid injections may include pain and swelling at the injection site. Inhaled steroids, such as for asthma, may lead to oral thrush.

Topical corticosteroids (creams, gels or lotions) may lead to thinning or darkening of the skin.

Use of corticosteroids to treat inflammation can lead to higher than normal blood glucose levels and, in longer term usage may lead to type 2 diabetes developing.

Use of corticosteroids to treat inflammation can lead to higher than normal blood glucose levels and, in longer term usage may lead to type 2 diabetes developing. What are corticosteroids? Corticosteroids are medications that contain synthetic versions of cortisol, the hormone produced by our...

www.diabetes.co.uk

It doesn't mention them having an effect on diabetes and given the source, I think it would if you needed to worry about it.