Lurker joins the club

[Greystoke]

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.

 

[Northerner]

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 😱

 

[mikeyB]

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.

 

[Davo]

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

 

[Greystoke]

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.

 

[Northerner]

Good to see the improvement @Greystoke 🙂

 

[Greystoke]

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. 🙂

 

[Northerner]

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.

 

[Greystoke]

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.

 

[Greystoke]

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. 😎

 

[Steff]

Hope things sort themselves out for you grey

 

[mikeyB]

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.

 

[Northerner]

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! 🙂

 

[Lucy Honeychurch]

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

 

[Robin]

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!

 

[Greystoke]

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. 😉

 

[Northerner]

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. 😉

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 🙂

 

[stephknits]

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.