# Lurker joins the club



## Greystoke (Apr 4, 2017)

Hello all! Been lurking for a few weeks and decided to say hello. 

A bit of a back story. I've always been fit and strong, having played Rugby League for 20+ years until I hung up my boots 4 years ago. Tried to stay fit via the gym but then an old back injury resurfaced and has limited what I could do for the last 2 years. Last summer my back went badly and I've been mostly sedentary since then.

So I put on weight...about 3 stone over the last 4 years. And then sat on my bum not doing very much. To make matters worse my father's side of the family almost all have type 1 (I didn't really know this, being adopted).

In January I came down with a nasty chest/lung infection requiring a few courses of antibiotics. About 2 weeks in I started experiencing weird symptoms: my eyesight went down to about 4-5 metres, desperately thirsty, needing the loo every 15 minutes, severe fatigue - and very rapid weight loss, about 1.5 stone in 3-4 weeks. 

After nagging the doctor they agreed these symptoms sounds like diabetes. I had blood tests and they said "nothing urgent but we'll call you in a week", only to tell me over the phone my reading was "a bit high and could be type 2 diabetes". No more info, stuck me on 2 x 500g Metformin and sent me away. That was it. No advice, no face-to-face appointment, nothing.

After a couple more weeks I pestered them again and finally got in to see a doctor. She told me my reading was "99, a bit high", doubled my Metformin to 4 x 500g a day and again sent me away. I had no idea what 99 meant, what test it was, nothing. Only another 3 weeks later when I saw a nurse did I get any advice and was the "99" put into context in terms of a HbA1c scale, when I realised it was rather high.

Anyway, it's been going fine and the lung infection has nearly cleared. Felt a bit fuzzy at times but nothing too bad. My diet has always been good - nearly all fresh & home-cooked food, no processed/fast food, no white bread, etc, and I've never been into sweets or chocolate, but of course now I'm extra careful. Like many on here I was too much of a wine lover (didn't help with my weight!), but stopped altogether until last weekend when I tried a little without any adverse effect. My back is much better so I'm also back in the gym and feeling the benefit. Total weight loss so far is just over 2 stone.

Despite that, I was back in with the nurse today and she did a quick glucose test. We were both very disappointed to find it at 20.6 rather than the ideal range of 3-7 (she said she'd accept up to 13 seeing as I'd eaten not long before). She took another HbA1c test just to check, results should be in 2 days.

So there we are. Sorry for the essay. In some ways it's been a good thing - lost plenty of weight and improved life style, back in the gym, but of course there's a bit more to it than that!


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## trophywench (Apr 4, 2017)

I think at least at the moment - your body needs a bit more help than just the Metformin.  20's massive in comparison to a non-D - and I couldn't handle being that high for longer than a few hours - I'd have raging thirst and would be dropping off to sleep wherever I happened to be standing and whatever I was doing.


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## Steff (Apr 4, 2017)

Evening and a warm welcome to the forum greystoke glad you came out the shadows and said hi 20 is high and .Maybe you need more help then just metformin


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## Robin (Apr 4, 2017)

Hello Greystoke, glad you decided to join in. 
As you have type 1 in your family, and don't seem to be responding to Metformin, are your GP and nurse keeping an open mind about the possibility of your Diabetes turning out to be Type 1? Unfortunately, some health care professionals seem unaware that you can develop Type 1 at any age ( I was 51 and misdiagnosed as Type 2 to start with)


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## Greystoke (Apr 4, 2017)

Hi trophywench, Steff & Robin.

Strange thing is I felt fine at the time - no thirst or fatigue to speak of. Ok, I was a little tired but that's more down to a very busy 4 year old daughter keeping me busy. Most symptoms have eased enormously in comparison to 2 months ago, though the thirst comes back on occasion and I'm more tired at night. My eyes also feel a bit 'gooey' at times though my vision is fine.

Robin - no, that hadn't even occurred to me. I'll make sure I raise it at my next consultation, thank you.


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## grovesy (Apr 5, 2017)

Welcome.
I agree with Robin about could you possibly be Type 1.


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## Northerner (Apr 5, 2017)

Hi Greystoke, welcome - glad to see you decided to de-lurk!  I'd also be keeping a close eye on things and pose the question about possible Type 1, given your family history. From what you've said (99 a 'bit high' - double what it should be! ) they don't sound particularly switched on, and to be fair, slow-onset Type 1 is relatively rare, so they may not have encountered it before. Are you testing at home to see how your food choices are affecting your levels? If not, I'd highly recommend it - read Test,Review, Adjust by Alan S to understand how this works and how it helps - periodic randon tests at your surgery will tell you very little, and give you no information on which to base any future choices. If you have to buy your own meter and strips, the cheapest option we have come across is the SD Codefree Meter which has test strips at around £8 for 50 (GPs often say you don't need to test and won't supply the meter and strips, but this is a false economy )

Let us know if you have any questions, we will be very happy to help!


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## Grannylorraine (Apr 5, 2017)

Welcome to the forum.  Sadly your experience when diagnosed is not unusual.


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## Flower (Apr 5, 2017)

Hello and welcome Greystoke  

What the others say re the possibility of type 1 given your family history. If things don't improve blood glucose wise despite all your best efforts do raise the issue with your medical team/gp. 

I hope things settle for you soon with which ever medication you need and you continue to feel better.


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## HOBIE (Apr 5, 2017)

Welcome Greystoke


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## mikeyB (Apr 5, 2017)

Aye, welcome Greystoke. I'm also of the opinion that you may be a late onset type 1, particularly with your family history, but most importantly because the Metformin is having no effect. Eat fewer carbs, drink plenty of water, and exercise as much as you can while you are waiting for an answer.

And I cannot say how much I welcome a Rugby League man to our forum. A game that rewards good handling skills rather than brainless punting and games won on penalty kicks. I can start the argument now that I have a big boy on my side


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## trophywench (Apr 5, 2017)

You already had a girlie, had you mentioned it Mike!

Good grief - the lead GP at my old docs was a rugger player and held some position at HO - I have to say that cos I honestly don't know whether he was League or Union - before he became Chair of the BMA.  (Being naïve I thought it was perfectly normal for one's GP to Chair the BMA and one's hospital D consultant be a Professor.  I just assumed that all D consultants must be Profs.)

Anyway when our eldest got engaged, it was a 2 day party.  All the Cricket friends on Saturday, all the Rugger ones on Sunday.  They live in Rugby, by the way!  Have to go past Tom Brown's old school on the way to my D clinic - playing field was packed the other week, hosting a team from elsewhere - team a supporters coaches parked - and all the years I've been going there - it's the first time we've seen anyone actually playing on that hallowed ground!


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## James 048 (Apr 6, 2017)

Hi Greystoke 
Warm welcome to the forum .


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## Greystoke (Apr 6, 2017)

Northerner said:


> Hi Greystoke, welcome - glad to see you decided to de-lurk!  I'd also be keeping a close eye on things and pose the question about possible Type 1, given your family history. From what you've said (99 a 'bit high' - double what it should be! ) they don't sound particularly switched on, and to be fair, slow-onset Type 1 is relatively rare, so they may not have encountered it before. Are you testing at home to see how your food choices are affecting your levels? If not, I'd highly recommend it - read Test,Review, Adjust by Alan S to understand how this works and how it helps - periodic randon tests at your surgery will tell you very little, and give you no information on which to base any future choices. If you have to buy your own meter and strips, the cheapest option we have come across is the SD Codefree Meter which has test strips at around £8 for 50 (GPs often say you don't need to test and won't supply the meter and strips, but this is a false economy )
> 
> Let us know if you have any questions, we will be very happy to help!


Thanks Northerner, my nurse had advised not to bother with a test kit but I'd been browsing for one. Bought the SD kit and additional test strips you recommended, it arrived this morning - less than 24 hours after ordering.

Of course lacking any patience I did a test straight away (just under an hour after eating) and got 16.8 mmol/L, which is of course still too high.


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## Greystoke (Apr 6, 2017)

mikeyB said:


> Aye, welcome Greystoke. I'm also of the opinion that you may be a late onset type 1, particularly with your family history, but most importantly because the Metformin is having no effect. Eat fewer carbs, drink plenty of water, and exercise as much as you can while you are waiting for an answer.
> 
> And I cannot say how much I welcome a Rugby League man to our forum. A game that rewards good handling skills rather than brainless punting and games won on penalty kicks. I can start the argument now that I have a big boy on my side


Hi mikey, good to find a fellow RL fan on here   I've had the old 'kick & clap' argument many times! That said, I've actually considered strapping the boots on again and playing RU - it's a little known truth that many RU clubs have 3-4 teams, with the 3rds & 4ths packed with 'vets' and the, erm, lesser skilled. Most people don't play RL much beyond the age of 30 due to the demands (actually, it's more the length of time to recover), but you can play RU until you're pulling your pension. 

Yes, I'm starting to agree with people on here, type 1 should be explored. I've cut out almost all carbs with the exception of the odd slice of burgen bread, a few root veg, and the very occasional biscuit at the mother-in-law's. I'll still have a glass of wine this weekend too. Exercising has been tricky due to my lingering chest infection but I'm back on it now.


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## Northerner (Apr 6, 2017)

Greystoke said:


> Exercising has been tricky due to my lingering chest infection but I'm back on it now.


Just a word of warning about exercise, Greystoke - if your problem is due to insulin insufficiency (i.e. you might be a slow-developing Type 1) then you shouldn't exercise if your blood sugar levels are above mid-teens. This is because it can actually cause your levels to go higher, and also cause a build up of acidic elements called ketones in your blood (created from the burning of body fat, when the body can't use glucose properly), which can be dangerous - high blood sugars and high ketones can lead to a condition called DKA (Diabetic Ketoacidosis). Don't want to be alarmist, but it's something you need to keep in mind until you get a firm diagnosis.

Hopefully, if you are over the infection, your levels will naturally become lower.


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## Greystoke (Apr 6, 2017)

Thanks Northerner, appreciated. I'll bear it in mind and perhaps not go too crazy in the gym tomorrow. I've looked up the symptoms so will try to be aware.

The results of my latest HbA1c came in today...but my GP is on leave over Easter and the receptionist couldn't tell me the results, although she did say the GP wants to discuss them. So we've booked a follow-up telephone consultation for 20th.

Took a reading just before eating this evening, a good 5 hours after my previous meal: 14.5mmol/L, and another just now 2 hours after eating: 18mmol/L.


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## Northerner (Apr 6, 2017)

Greystoke said:


> Thanks Northerner, appreciated. I'll bear it in mind and perhaps not go too crazy in the gym tomorrow. I've looked up the symptoms so will try to be aware.
> 
> The results of my latest HbA1c came in today...but my GP is on leave over Easter and the receptionist couldn't tell me the results, although she did say the GP wants to discuss them. So we've booked a follow-up telephone consultation for 20th.
> 
> Took a reading just before eating this evening, a good 5 hours after my previous meal: 14.5mmol/L, and another just now 2 hours after eating: 18mmol/L.


Not a bad rise from the meal, hopefully those 'base' levels will fall before long and the whole thing will look a lot better


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## Greystoke (Apr 7, 2017)

Morning! Sorry to keep bumping this thread but I did a test first thing this morning: 20mmol/L.

Should I be concerned that's higher than pre (14.5) and post-food (18) yesterday evening, and after an overnight fast?

With my GP on leave I won't be seeing anyone for another 2 weeks. Not liking the direction these results are going.


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## Northerner (Apr 7, 2017)

Greystoke said:


> Morning! Sorry to keep bumping this thread but I did a test first thing this morning: 20mmol/L.
> 
> Should I be concerned that's higher than pre (14.5) and post-food (18) yesterday evening, and after an overnight fast?
> 
> With my GP on leave I won't be seeing anyone for another 2 weeks. Not liking the direction these results are going.


I'm not liking them either - is there another GP you can see at the practice? I think you shouldn't wait for your own GP.


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## Greystoke (Apr 7, 2017)

Northerner said:


> I'm not liking them either - is there another GP you can see at the practice? I think you shouldn't wait for your own GP.


Yes - spoke with another GP earlier and he prescribed Alogliptin, just picked it up. If that doesn't help they'll start looking at the possibility of Type 1.

Also gave me my latest HbA1c result: 105, which is up from 99 2 months ago.

On the advice of a very helpful pharmacist (and this forum!) I've decided to quit the gym for the moment and just go walking. Frustrating but things need to settle first, at least to around 10mmol/L.


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## Northerner (Apr 7, 2017)

Greystoke said:


> Yes - spoke with another GP earlier and he prescribed Alogliptin, just picked it up. If that doesn't help they'll start looking at the possibility of Type 1.
> 
> Also gave me my latest HbA1c result: 105, which is up from 99 2 months ago.
> 
> On the advice of a very helpful pharmacist (and this forum!) I've decided to quit the gym for the moment and just go walking. Frustrating but things need to settle first, at least to around 10mmol/L.


If you start feeling poorly, then do seek help. It's good that they are entertaining the possibility of Type 1, but don't work to their diary if things take any kind of turn for the worse - Type 1 can turn nasty pretty quickly. I got very sick over a period of about 3 days and got diagnosed in A&E. When I was diagnosed my HbA1c was 106 mmol/mol and a fingerprick test of 38 mmol/l


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## mikeyB (Apr 8, 2017)

Just keep a close eye on those numbers. If you're still getting high double figures on waking, then with your history of rapid weight loss, you are almost certainly Type 1. As Northerner says, Type 1 can go tits up very rapidly, so if you ever find yourself with a BG of 25 or higher, your next stop should be A&E. it's a medical emergency. Northerner was lucky to get out alive with a BG of 38.


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## Davo (Apr 8, 2017)

Welcome Greystoke to the forum, particularly being a fellow RL fan (my team lost last night unfortunately - Leeds). This is certainly the place to be, I have not been here long but already received some great advice. My sugar levels are normally high but not as high as yours so I would certainly get this checked out again


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## Greystoke (Apr 9, 2017)

Thanks for the advice guys - and hi Davo...I watched Leeds last night, crikey Ben Westwood was a lucky boy! My team also lost to a very good Cas on Thursday. 

Still in double figures but come down a little since starting on Alogliptin. 12.5 going to bed last night, 13.2 on waking this morning. Hovered around the 14/15 mark all day and 11.3 just now before going to bed. From what I've read Alogliptin should take full effect by day 5 or 6.


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## Northerner (Apr 9, 2017)

Good to see the improvement @Greystoke


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## Greystoke (Apr 10, 2017)

Uurgh numbers creeping up again...15-18 yesterday, 16.7 on waking this morning and 21 a couple of hours after breakfast. Feeling a bit 'tight' today, as if my muscles are a bit tender, if that makes sense to anyone.

Admittedly - partly through being in a hurry to get to my retina scan appointment, but also curiosity, for breakfast I had all-bran with milk and Greek yoghurt, topped with blueberries & strawberries. Thought it might have an effect but still quite a big rise to my highest result yet. If the numbers are still so high towards the end of the week I'll pester my GPs again.

Back to eggs & other safe stuff from now on.


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## Northerner (Apr 10, 2017)

Are you testing for ketones, @Greystoke? If not, I think you need to - you can buy ketostix over the counter for about £5 for 50 - urine sticks, so not ideal, but a good precaution. Might sound weird, but I'd also get someone to smell your breath - ketones give a smell of acetone, similar to pear drops.


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## Greystoke (Apr 10, 2017)

After you mentioned DKA last week I bought a pack of test strips - today's test shows 'trace'. I'll keep an eye on it. No pear drops yet, or so I'm told.


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## Greystoke (Apr 12, 2017)

Quick update...blood levels haven't come down, been between 15-21 over the last few days. Ketone levels have been rising slowly over the last 3-4 days, currently between 3-6 mmol/L. Don't feel too bad at all physically but obviously these numbers are too high.

As the Metformin and Alogliptin haven't had any effect, GP and hospital agreed today it's looking like Type 1 - so I'm at the hospital in the morning to pick up insulin and learn what to do with it!

Hopefully I can start to manage this properly now.


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## Steff (Apr 12, 2017)

Hope things sort themselves out for you grey


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## mikeyB (Apr 12, 2017)

At last, is all I can say. Or about time. Can't decide which is more appropriate. Make sure your GP records are changed to type 1. 

Best of luck on the insulin regime. You'll feel better straight away.


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## Northerner (Apr 12, 2017)

Greystoke said:


> Quick update...blood levels haven't come down, been between 15-21 over the last few days. Ketone levels have been rising slowly over the last 3-4 days, currently between 3-6 mmol/L. Don't feel too bad at all physically but obviously these numbers are too high.
> 
> As the Metformin and Alogliptin haven't had any effect, GP and hospital agreed today it's looking like Type 1 - so I'm at the hospital in the morning to pick up insulin and learn what to do with it!
> 
> Hopefully I can start to manage this properly now.


Thanks for the update, good to hear that they are not quibbling and acting quickly  If you are given any choice (or even if you aren't!) I'd recommend making sure you are put on a 'basal/bolus' regime (also known as MDI - Multiple Daily Injections). It consists of a slow-acting 'background' insulin you take once or twice a day, and a fast-acting insulin that you take with your food. This is the most flexible regime, enabling you to give insulin according to your food choices. The less flexible 'mixed' insulin forces you to eat at certain times of day, and certain amounts of carbs - whether you want to or not.

Hope all goes well!


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## Lucy Honeychurch (Apr 12, 2017)

Best of luck, your levels will start to come down with insulin regime.


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## Robin (Apr 12, 2017)

Glad you're getting sorted quickly now, so your body can start returning to normal. I didn't realise just how awful I'd been feeling til I started to feel better!


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## Greystoke (Apr 13, 2017)

Northerner said:


> I'd recommend making sure you are put on a 'basal/bolus' regime (also known as MDI - Multiple Daily Injections). It consists of a slow-acting 'background' insulin you take once or twice a day, and a fast-acting insulin that you take with your food. This is the most flexible regime, enabling you to give insulin according to your food choices.


Thanks Northerner - yes, they've put me on this regime thankfully.

Went fine at the hospital, nurses and consultants were great, even gave me a glucose & ketone meter and strips on prescription! They were annoyed I had been told not to test, and that I'd not already been given a kit. A follow-up call scheduled for Tuesday when I suspect they'll increase my insulin dose. Today's levels started at 16.6 and after a couple of injections was 11.2 just now - my record low since I started testing! 

Also had my retinopathy this afternoon after a mad dash from the hospital. Those eye drops are nasty! Eyes just about settling down now.

Thanks all for the wishes, looking forward to getting back to feeling human again.


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## Northerner (Apr 14, 2017)

Greystoke said:


> Thanks Northerner - yes, they've put me on this regime thankfully.
> 
> Went fine at the hospital, nurses and consultants were great, even gave me a glucose & ketone meter and strips on prescription! They were annoyed I had been told not to test, and that I'd not already been given a kit. A follow-up call scheduled for Tuesday when I suspect they'll increase my insulin dose. Today's levels started at 16.6 and after a couple of injections was 11.2 just now - my record low since I started testing!
> 
> ...


Glad you are getting sorted, and it sounds like you have good support there  Hope all is OK when the scan results come back - I agree, the drops are something I could do without too! Just something to watch out for as your levels come under better control - it's common for a person's eyesight to become blurry. This is because the high sugars distort the shape of the lens, and as the BG levels improve, the shape of the lens can settle back to normal, so often there is a period of a week or two when it becomes very difficult to focus properly. If this happens, don't worry, and don't get any new glasses as your prescription will change again - many people find their eyesight has actually improved when things settle down! I bought myself some cheap reading glasses in the meantime 

Hopefully, they will also put you on a course so that you can learn how to carb count - this is adjusting your fast-acting insulin doses to match the amount of carbs in the food you wish to eat. DAFNE is a popular course, but your area might have their own version.

I hadn't realised just how bad I had been feeling in the months leading up to my diagnosis - I put much of it down to advancing age (I was 49). Once they gave me insulin I felt completely different, so much more energy!  Hope the same is true of you 

Get yourself a copy of Type 1 Diabetes in Children Adolescents and Young People by Ragnar Hanas - don't be misled by the title, it is brilliant whatever your age, and will fill you in on all the ins and outs of living with Type 1


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## stephknits (Apr 14, 2017)

I agree with everyone, the difference when the insulin brings your levels down is amazing.  Hope you are feeling much better and do glad you have got the correct diagnosis at last.  I spent 7 months with b's levels never below 10 and eating as few carbs as possible before mine got changed.  Let us know how you are doing and good for you being proactive.


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