Recently diagnosed & struggling

[KateS]

Hello, I was diagnosed with type 1 diabetes in January after a DKA at 44. I’ve felt really lost since as I’ve been left to deal with it with little help. COVID has prevented me from getting the usual level of care. My sugars are often over 14 when I wake up and bouncing from 4 to 19 throughout the day. I feel so rubbish all the time. I’ve learnt to carb count, but don’t think my is ratio right. I’m not sure if my daily long acting is high enough as my sugars always go up overnight. The insulin I take for my meals seems to cancel out the carbs but not bring down my sugars enough. I’m not sure when to take extra insulin to bring them down as I was told to eat very 4 hours and not to take extra insulin between the injections. Exercise helps to bring them down under 8. But it’s very easy to have them drop under 4 and suffer a hypo only for them to bounce back over 14. I don’t know how to get them in a more safe range. Any advice would be much appreciated.

 

[TashT1]

Hi Kate, welcome to the forum I’m sorry your struggling right now.

Do you have access to anyone from your diabetes team? Either the hospital diabetic nurses or community diabetic nurses? I was diagnosed during covid but have always been able to contact someone for support, but this unfortunately does not appear to be the case for everyone.

We can tell you the theory & process behind basal testing, carb ratios & correction doses. But it would be safer if you had your teams support to.

I’m curious when your diabetes team last contacted you because usually they keep a close eye until you have lower numbers, advising basal & bolus adjustments.

What kind of insulin’s are you using? Have you experimented with adjusting the ratios yourself?

 

[KateS]

Hi, thank you for replying. I was in contact with the nurses most weeks for the first 2 months and then they said they would get back to me with the next appointment and never did. I chased it after a couple of weeks and have now got a phone appointment in a months time. It’s frustrating as initially I was told not exercise and not to try carb counting yet and just use a set dosage at meal times. But then I had a telephone appointment with the consultant and he said I should already be exercising and carb counting and the nurses plan was too reactive and I should be more proactive. He left me feeling mixed up and it wasn’t followed up by a nurse so I’ve been confused what to do. The nurse dietician was happy to sign me off as she felt I quickly understood carb counting but I’ve not had any support to try it properly. I’ve been told to take 6 units of novorapid insulin if my sugars are under 11 and 8 units if it’s over. I am taking 27 units of glargina insulin at 5pm to try to stop the big increase in my sugars overnight. I’m not snacking and only drinking water and making sure my meals are balanced and healthy. But my sugars are all over the place. I was told to eat at 4 hour intervals and test my bloods 4 times a day before meals and before bed. I have been trying to add a correction dose before my meals. One unit to bring it down 3 Milli moles. But it doesn’t seem to help much. I get exhausted if my sugars are over 14 and start to get symptoms of a hypo when they fall under 6. Shivering, feeling freezing cold, feeling poorly. But I’ve only had one official hypo when it’s gone under 4. I’ve tried carb counting on my own and doing trial and error to work out my ratio. But I’m a bit lost and struggling.

 

[Daibell]

Hello, I was diagnosed with type 1 diabetes in January after a DKA at 44. I’ve felt really lost since as I’ve been left to deal with it with little help. COVID has prevented me from getting the usual level of care. My sugars are often over 14 when I wake up and bouncing from 4 to 19 throughout the day. I feel so rubbish all the time. I’ve learnt to carb count, but don’t think my is ratio right. I’m not sure if my daily long acting is high enough as my sugars always go up overnight. The insulin I take for my meals seems to cancel out the carbs but not bring down my sugars enough. I’m not sure when to take extra insulin to bring them down as I was told to eat very 4 hours and not to take extra insulin between the injections. Exercise helps to bring them down under 8. But it’s very easy to have them drop under 4 and suffer a hypo only for them to bounce back over 14. I don’t know how to get them in a more safe range. Any advice would be much appreciated.

Hi. You are not being treated properly. Yes, you should be carb-counting by now. We're not supposed to give specific advice but if you look on the web you will find suitable guidance and some of it from NHS clinics etc. The first priority is to ensure your Basal insulin is balanced. To check this leave a few hours without eating and see if you BS goes up or down. This will guide you to reducing or increasing your Basal. Only do it by a small amount over 2-3 days and test regularly as usual. When it's in the right area your morning fasting BS should be somewhere between 5 & 7 mmol. The advice to not use insulin between meals for corrections is questionable but was given to avoid insulin stacking i.e. taking more when the original dose hasn't completed and risking a hypo. Bolus insulin takes a max of 5 hours to finish so use some judgement if your BS is way too high.

 

[Del55]

Hi, I was recently diagnosed with Type 2. Of course due to Covid restrictions, I had a phone conversation with a local GP who prescribed medication and gave me the Diabetes web site for more information. After I was told of the condition / disease, I genuinely felt that I could handle the situation quite easily. However, that is not the case and feeling quite ..... well don't know what I'm feeling at the moment. Best described as numb.
I have tried to make appointments with diabetic nurse but due to Covid issues, these appointments are difficult to get. I have read many of the messages posted and in essence diet / lifestyle changes plus exercise is clearly crucial to dealing with the condition. But genuinely apart from the prescribed medication, just don't know where to start. That's where it seems 'you're on your own' and as this is new to me .... I'm struggling.

 

[TashT1]

Unfortunately your diabetes nurse seems to have led you on a bit of a difficult path.

Carb counting & carb ratios are all about trial and error but the process is only as good as the data you have to interpret. If your on fixed doses of insulin, do you also eat a fixed amount of carbs?

Insulin will only deal with a certain amount of carbs & this is different for everyone. The 1 unit to 10g ratio is just a starting point.

First thing you need to do is write everything down (if your not already). You need to note pre-meal levels, no. of carbs, insulin dose and levels 2hrs after first bite. This way you can see what effect your meal is having on your BG levels. If you only rise by 2mmol or less it’s pretty accurate, if it rises by more you would try increasing your insulin next time for the same amount of carbs.

You can figure this out by yourself, I did, I just did a lot of reading & extensive note taking. If you repeat the steps above for every meal for a few days you should then be able to work backwards to calculate a carb ratio. Just to confuse matters your ratios might be different for each meal time.

Your correction attempts won’t work if your carb ratio isn’t correct as the insulin will just still be working against the additional carbs. Even then correction doses are individual so 1u might not bring you down 3mmol.

You don’t need to eat at 4hr intervals, but it is advisable to not take insulin less than 4hrs apart because of how long novarapid can keep working.

Having high levels is exhausting & when you have been high for a long time your body can be so used to it that going lower can feel like a hypo. But if you can bring those highs down that will stop happening & you will feel so much better in the 6s.

Which basal are you on Lantus? If your taking it at night you shouldn’t be going high overnight. Plus often if your basal is not correct your ratios will not work so well.

 

[KateS]

Thank you for replying. I will do all the things you suggest. I’ve been taking detailed notes, but I’m obviously not testing enough. It’s been hard enough getting enough test strips for 4 tests a day so I will have to fight to get more. I find it so hard to work out what’s best to do as hormones, sleep, exercise and stress can all have an effect. I can do exactly the same thing 2 days in a row and still get different levels. With so many factors affecting it it can be so hard to know which to change. I’ve felt like my basal insulin has been to low since the start and my sugars go up overnight even though I last ate at 5pm, but I feel scared to change it without guidance. It’s horrible to feel so out of control. I want there to be rules to follow and it feels like you just have to try and see. I asked if I could have a libra monitor as I have scerloderma which means I have thinkened skin on my fingers and Raynauds which cuts off the blood flow to my fingers. This means I often have to prick my fingers multiple times just to get a tiny drop of blood. But the consultant didn’t think I’d understand how to use it properly and would over compensate. It was very frustrating. I have 3 auto immune diseases and it’s so exhausting and upsetting trying to maintain some semblance of normal and not just want to give in and sleep the day away. I hate that it’s taking me so long to manage this. Thank you.

 

[KateS]

Hi, I was recently diagnosed with Type 2. Of course due to Covid restrictions, I had a phone conversation with a local GP who prescribed medication and gave me the Diabetes web site for more information. After I was told of the condition / disease, I genuinely felt that I could handle the situation quite easily. However, that is not the case and feeling quite ..... well don't know what I'm feeling at the moment. Best described as numb.
I have tried to make appointments with diabetic nurse but due to Covid issues, these appointments are difficult to get. I have read many of the messages posted and in essence diet / lifestyle changes plus exercise is clearly crucial to dealing with the condition. But genuinely apart from the prescribed medication, just don't know where to start. That's where it seems 'you're on your own' and as this is new to me .... I'm struggling.

Sorry you are struggling too. I hope you can get a nurse appointment soon and some proper help. It’s bewildering knowing where to start. I will happily do all the things needed to manage this, but despite reading a lot I’m still really lost where to begin.

 

[bulkbiker]

Hi, I was recently diagnosed with Type 2. Of course due to Covid restrictions, I had a phone conversation with a local GP who prescribed medication and gave me the Diabetes web site for more information. After I was told of the condition / disease, I genuinely felt that I could handle the situation quite easily. However, that is not the case and feeling quite ..... well don't know what I'm feeling at the moment. Best described as numb.
I have tried to make appointments with diabetic nurse but due to Covid issues, these appointments are difficult to get. I have read many of the messages posted and in essence diet / lifestyle changes plus exercise is clearly crucial to dealing with the condition. But genuinely apart from the prescribed medication, just don't know where to start. That's where it seems 'you're on your own' and as this is new to me .... I'm struggling.

What medication were you prescribed?
What was your HbA1c on diagnosis?
Do you have a blood glucose meter?

We have all been where you are now and know how disrupting it can be but... we've all come through the other end too and many have ended up far healthier than they started.

 

[TashT1]

Thank you for replying. I will do all the things you suggest. I’ve been taking detailed notes, but I’m obviously not testing enough. It’s been hard enough getting enough test strips for 4 tests a day so I will have to fight to get more. I find it so hard to work out what’s best to do as hormones, sleep, exercise and stress can all have an effect. I can do exactly the same thing 2 days in a row and still get different levels. With so many factors affecting it it can be so hard to know which to change. I’ve felt like my basal insulin has been to low since the start and my sugars go up overnight even though I last ate at 5pm, but I feel scared to change it without guidance. It’s horrible to feel so out of control. I want there to be rules to follow and it feels like you just have to try and see. I asked if I could have a libra monitor as I have scerloderma which means I have thinkened skin on my fingers and Raynauds which cuts off the blood flow to my fingers. This means I often have to prick my fingers multiple times just to get a tiny drop of blood. But the consultant didn’t think I’d understand how to use it properly and would over compensate. It was very frustrating. I have 3 auto immune diseases and it’s so exhausting and upsetting trying to maintain some semblance of normal and not just want to give in and sleep the day away. I hate that it’s taking me so long to manage this. Thank you.

It’s really hard having other medical issues on top of diabetes, I’ve a second autoimmune disease too.

If finger pricking is difficult then a libra is the way to go. I’m not sure why your consultant was so dismissive, with a bit of research & guidance it’s easy to understand the libra data. Are you able to self fund for a month or two to prove a point & help with getting your levels down? It’s about £100 a month for the sensors.

It might be a bit tricky to see what your basal is doing overnight because there’s lots of factors that will raise levels first thing in the morning. You could talk to your nurse about taking it in the morning, then you can track what happens throughout the day. A libra would show you what’s happening overnight too.

It’s really difficult because diabetes can be so unpredictable, anything & everything can throw things out of whack. Eventually you will become comfortable with this & create your own rules to follow that work for you.

 

[Del55]

What medication were you prescribed?
What was your HbA1c on diagnosis?
Do you have a blood glucose meter?

We have all been where you are now and know how disrupting it can be but... we've all come through the other end too and many have ended up far healthier than they started.

I was prescribed Metaformin
HbA1c reading is 58 mmol/mol
Advised to buy a Blood Pressure monitor
No - not got a blood glucose meter. Should I get one?

 

[EllieM]

I asked if I could have a libra monitor as I have scerloderma which means I have thinkened skin on my fingers and Raynauds which cuts off the blood flow to my fingers. This means I often have to prick my fingers multiple times just to get a tiny drop of blood.

My understanding is that both libre and dexcom are running free trials on their sensors at the moment.... (Dexcom is more expensive but if you do get a free trial make sure you don't throw the transmitter away after the trial, as they normally last 3 months).

 

[bulkbiker]

I was prescribed Metaformin
HbA1c reading is 58 mmol/mol
Advised to buy a Blood Pressure monitor
No - not got a blood glucose meter. Should I get one?

I (and many others here) would highly recommend buying your own blood glucose meter.
It will enable you to monitor your progress and watch out for the foods that cause spikes in blood glucose.
Your HbA1c of 58 mmol/mol should be relativey easy to lower with some dietary changes mainly involving reducing carbohydrate consumption and you'll be able to see this happen with a meter.
Blood pressure monitor is also not a bad idea and relatively cheap but for a T2 monitoroing blood sugars levels is very important.

 

[ert]

First thing you need to do is write everything down (if your not already). You need to note pre-meal levels, no. of carbs, insulin dose and levels 2hrs after first bite. T

The 2 hr levels are for type 2 diabetics. For type 1's on insulin you need to note the pre-meal blood sugar levels and 4-5 hours afterwards. Injected insulin follows a fixed curve over 5 hours and doesn't match the food you eat, so if you eat normally you will spike your blood sugars which you are told to ignore. As long as they return to pre-meal levels 5 hours after eating your short-acting dose was correct.

 

[TashT1]

The 2 hr levels are for type 2 diabetics. For type 1's on insulin you need to note the pre-meal blood sugar levels and 4-5 hours afterwards. Injected insulin follows a fixed curve over 5 hours and doesn't match the food you eat, so if you eat normally you will spike your blood sugars which you are told to ignore. As long as they return to pre-meal levels 5 hours after eating your short-acting dose was correct.

I think we will have to agree to disagree (or maybe discuss in another thread). In my opinion I would rather aim for as flat a profile as possible, yes spikes will happen but why accept that all the time & not keep them to a minimum? My consultant is also of the opinion, the more time spent in range the better overall health will be. By accepting the spike your staying out of range for up to 3hrs for each meal. So I’m advised to correct after 2hrs where appropriate. If you get the carb ratio right it’s possible to only see a small rise, then a return to pre-meal levels.