Hello

[esonny986]

Hi guys new here today

 

[Inka]

Welcome @esonny986 🙂 How long have you had diabetes? I’m presuming you’re on insulin?

 

[esonny986]

Hello, thanks for the welcome. I've been told I have/haven't got diabetes for the last 4/5 years, finally diagnosed with type3c in October 20. I take lantis and nova-rapid. Feel like it's ruined my life at the moment as struggling with it. Sorry to put that on you.

 

[Inka]

No problem @esonny986 - that’s what the forum is here for. Moan and rant as much as you want. We all understand how wearing diabetes can be and how it can get you down dealing with it day after day.

There are a number of 3cs here, including @eggyg and others. Is there anything in particular you’re struggling with in a practical sense eg highs, lows, carb-counting, or is it mainly the mental load of it all?

 

[Leadinglights]

Hello, thanks for the welcome. I've been told I have/haven't got diabetes for the last 4/5 years, finally diagnosed with type3c in October 20. I take lantis and nova-rapid. Feel like it's ruined my life at the moment as struggling with it. Sorry to put that on you.

Welcome to the forum, there is lots of advise which I'm sure will be helpful and reassuring for you that although it is initially a shock and overwhelming and you will need time to settle into a routine which will become easier. There are several people with Type 3c so you are not alone and they will be all too willing to give some of their experiences of how they manage day to day.
Something which would help them give appropriate comments would be a bit more information about how you came to be diagnosed and what meds and insulin regime you are adopting.
Take it day at a time is the message.

 

[Docb]

Welcome to the forum @esonny986. Don't worry about talking about the problems you are having. If you can say what you are struggling with then I am sure members who have already been there will be along with support, sympathy but most likely some practical ideas to help you to get things on track.

 

[Docb]

Two others beat me to it!

 

[SB2015]

Welcome to the forum @esonny986 . I am glad that you have found us, and this is an ideal place to say how you are feeling. People will ‘get it’ on here.

It is a lot to take on board at the start and a very steep learning curve, BUT it does get easier. The best analogy I was given is that it is like learning to drive. It seems complicated at the start. It then much of it becomes automatic.

It is good that you are on both background (basal - Lantus) and quick acting insulin (bolus - Novorapid)
This is a flexible system and enables you to eat what you want to when you want to.

Are you able to identify what it is that is causing you the most difficulties at present?
Nothing is considered silly on here. Just ask for the help that you need.

 

[esonny986]

Hi guys, I want to thank you for your advice and update you on my week. Its been by far the best week diabetes wise since diagnosis. Its only been a week so I'm trying not to get ahead of myself. After listening to you guys I made a few changes and implemented them. I've started to take nova-rapid first thing and so far its stopped me spikeing 15+ and it is about 10/12 so I might need a little more in the morning. I've also started to wait 20-30mins to eat after taking insulin instead of 5-10mins and that keeps me at a steady level instead of a high spike and a rapid drop. The worrying is still there all the time but the fear and panic has been alot less. I feel safer when I go out, although I need some advice about guessing the amount of carbs when eating out. Also any advice on symtoms when dropping, I notice alot when rising but when dropping there is nothing to help warn me apart from libre sensor. Overall its been a good learning experience and I hit 86% in target which I never thought possible, Thanks so much guys

 

[rebrascora]

Good to hear you have managed to implement some of the suggestions on your other thread and you are seeing a dramatic improvement. 86% TIR is brill!
Increased confidence will only come with experience. How low do you go before you get hypo symptoms and what symptoms do you get?
I used to find that my peripheral vision would become blurry and sometimes my lips would tingle. Now I often get a sinking feeling in my stomach a bit like mild indigestion. The thing with hypos is that the more you have the less your body panics about them so the easier they are to deal with which means you get more confident. The down side of that is that it can mean you lose some hypo awareness as your body gets used to lower levels.
What is your Libre low alarm set at? Maybe adjust that to a little higher and then instead of treating when your alarm goes off, pay closer attention to how you feel whilst closely monitoring your levels and only treat if you drop below 4. This may help you to start recognising the signs better. If your Libre alarm is going off and you are treating at say 4.5 you are unlikely to get any symptoms unless your levels are dropping really fast, so you don't really learn what to look out for. Also, Libre tends to read a bit lower at low levels, so it may show your level at 4.5 but your actual BG reading may be nearer 5 or more so again, you wouldn't expect to get hypo symptoms at 5. It is quite important to double check Libre readings at low levels or very high levels with a finger prick to get a more accurate idea of your actual level. What I am saying is that you might not be getting hypo symptoms because you are not actually hypo when the Libre alarms.

 

[esonny986]

Good to hear you have managed to implement some of the suggestions on your other thread and you are seeing a dramatic improvement. 86% TIR is brill!
Increased confidence will only come with experience. How low do you go before you get hypo symptoms and what symptoms do you get?
I used to find that my peripheral vision would become blurry and sometimes my lips would tingle. Now I often get a sinking feeling in my stomach a bit like mild indigestion. The thing with hypos is that the more you have the less your body panics about them so the easier they are to deal with which means you get more confident. The down side of that is that it can mean you lose some hypo awareness as your body gets used to lower levels.
What is your Libre low alarm set at? Maybe adjust that to a little higher and then instead of treating when your alarm goes off, pay closer attention to how you feel whilst closely monitoring your levels and only treat if you drop below 4. This may help you to start recognising the signs better. If your Libre alarm is going off and you are treating at say 4.5 you are unlikely to get any symptoms unless your levels are dropping really fast, so you don't really learn what to look out for. Also, Libre tends to read a bit lower at low levels, so it may show your level at 4.5 but your actual BG reading may be nearer 5 or more so again, you wouldn't expect to get hypo symptoms at 5. It is quite important to double check Libre readings at low levels or very high levels with a finger prick to get a more accurate idea of your actual level. What I am saying is that you might not be getting hypo symptoms because you are not actually hypo when the Libre alarms.

Thanks for your response. Symptoms I usually have are dizziness, headaches, feeling like I'm on a boat and a bit of nausea but thats when going high, When I've had hypos its more like o s**t and I wake up in a&e or paramedics, but today I was 3.2 and I was shaking, feeling like I was sweating and a need to sit down whilst I was waiting for food to kick in, If I was out at the time though and hadn't just eat I'd of been in trouble as it was to quick a drop to respond.

 

[everydayupsanddowns]

Great to hear you’ve made some very effective changes, a d are growing in confidence @esonny986 - you never stop learning and relearning with diabetes, and things will ebb and flow as the years go by, so learning to adapt, adjust and roll with it are really helpful.

When I've had hypos its more like o s**t and I wake up in a&e or paramedics, but today I was 3.2 and I was shaking, feeling like I was sweating and a need to sit down whilst I was waiting for food to kick in, If I was out at the time though and hadn't just eat I'd of been in trouble as it was to quick a drop to respond.

Do you carry hypo treatments with you everywhere you go?

These might be glucose tablets, lucozade or something high glucose and low fat like Jelly Babies, Skittles or similar. It’s a good idea to have stuff stashed in pockets, and in different rooms (eg by the bed) so that you can take some fast acting carbs as soon as you feel any symptoms. Normal food isn’t fast enough.

The general guide is to take 15g of fast carbs, wait 15 minutes and recheck with a BG meter (your Libre will be lagging behind by 10 minutes or so) If still below 4, take another 15 and wait 15.

Frustratingly sometimes symptoms of low BG can echo those of high BG, so it can be wise to carry a meter with you, as well as your Libre, just to be sure.

Common symptoms of low BG can be:

• feeling shaky
• feeling disorientated
• sweating
• being anxious or irritable
• going pale
• palpitations and a fast pulse
• lips feeling tingly
• blurred vision
• being hungry
• feeling tearful
• tiredness
• having a headache
• lack of concentration
• night sweats.

And these can be quite subtle if your BG is only dropping slowly, or if you have been going low quite often (your brain changes to adapt, and doesn’t fire the warning signs as early)

More information here:

What is a hypo (hypoglycaemia)?

A hypo is when your blood sugar level, also called blood glucose level, drops too low. This is usually below 4mmol/l. A hypo, also called hypoglycaemia, can happen quickly. So it’s important to always have hypo treatments with you. It's also important to know what the signs are and how to treat...

www.diabetes.org.uk

Can you see a pattern in your lows? Any adjustments you can make to try to reduce the chances of them happening?

 

[esonny986]

Hi ya, I've not noticed any patterns as such with lows as yet. But, now I'm in target range alot more I have noticed that when the nova-rapid runs out (I'm guessing that is what's happening), my bloods either start to rise or drop suddenly and fast, I either take 4/5 dextro tablets and seek food when low or take more insulin and seek food if going high and I feel like thats the right strategy and seems to be working so far, but that is when I'm home and relaxed, I've not learnt how to manage this when out though as I'm still (scared) worried about hypos. Are there any apps that are reliable to help calculate carbs in foods when out (ie from Greggs, Sub-way, fish and chips etc). Once again thank you guys for help/tips and advice, can't believe I was trying to do this on my own and alone. Stupid me

 

[rebrascora]

Thanks for your response. Symptoms I usually have are dizziness, headaches, feeling like I'm on a boat and a bit of nausea but thats when going high, When I've had hypos its more like o s**t and I wake up in a&e or paramedics, but today I was 3.2 and I was shaking, feeling like I was sweating and a need to sit down whilst I was waiting for food to kick in, If I was out at the time though and hadn't just eat I'd of been in trouble as it was to quick a drop to respond.

Wow! I can totally understand now why you would lose your confidence to go out. Passing out with a hypo must be very scary and leave you feeling really vulnerable and insecure. Good that with this recent hypo, you got some symptoms. Hopefully that is a sign that things are stabilizing. I wonder if they started you off on too much insulin and that your own insulin production was still kicking in in fits and starts occasionally and unpredictably (honeymoon period) causing the dramatic drops in levels which rendered you unconscious. Hopefully as your own insulin production grinds to a halt things will become easier to manage and you will gain better control and more confidence.

As regards apps for food, I think there are a few. Carbs and Cals and Nutrichek being 2 of the most popular here on the forum. I haven't used either myself as I follow a low carb way of eating to stabilize my BG levels.

Can I ask how you treat hypos? Do you follow the "15 rule"? 15 grams of fast acting carbs, wait 15 mins and retest by finger prick not Libre. If levels have not come up, have 15g more of fast acting carbs and so on. Once your levels get above 4 then you can opt to have 10-15g of slower acting carbs like a biscuit or a slice of toast to stabilize levels but it is best to ensure your levels come above 4 with fast acting carbs before you have the slower acting carbs. Personally I have never needed the slower acting carbs as my levels would be up in double figures for the rest of the day, which I hate, but you need to find what works for you.
It is really important to double check Libre readings when high or low with finger pricks rather than rely on Libre because the interstitial fluid that Libre measures lags behind blood glucose by 10-15 mins, so it takes about 30 mins to show the carbs you have eaten have worked. The 15 min finger prick check after treatment will usually show that your levels have come up to a safe level but the Libre will often show that your levels have dropped lower due to that delay. Without that finger prick check, you would likely over treat your hypo and end up going too high. To make matters worse I usually feel feel worse when I am recovering from a hypo than I do when my levels are at their lowest and that is because the adrenaline has kicked in and that makes you sweat and your heart pound and puts your body into shock basically, even though the glucose you took is fixing the problem. It's just a slightly delayed reaction, so you have to learn not to eat everything in sight and just trust when your finger prick reading has come above 4 you are OK and just need to try to relax and let the adrenaline dissipate a bit.

Hope some of that makes sense. You have to be quite self controlled when treating a hypo but with your really bad experiences, I can understand that being difficult.

I think you would really benefit from getting onto a DAFNE (Dose Adjustment For Normal Eating) course or whatever your local equivalent is. It is an intensive week long course but it is hugely helpful in improving your confidence to keep yourself safe in all manner of real life situations and you get to spend a week in the company of other Type 1 diabetics, which is essentially what you are as a type 3c (with added complications). Ask your nurse for a referral onto a DAFNE course. It takes a while to get onto a course, so the sooner you get your name on the list, the better. There is also an online "BERTIE" course which is very similar but learning from each other in the DAFNE format is one of the main benefits of that particular course. Also having a very highly qualified DSN run her eyes over your daily log of readings for a week helps enormously in ironing out any dosing problems or highlighting a need for a change of insulin or additional technology to help you manage your BG levels better.

Anyway, sorry to ramble on so much. Hopefully some of what I have typed will make sense now and some will probably start to fall into place later. It's just such a huge learning curve in the beginning, so go easy with yourself and just take small steps to rebuild your confidence day by day.

 

[Felinia]

Hi
I just checked my NutraCheck app and they do feature both Greggs and Subway under Eating out - Coffee Shops - plus loads more. It reads to me though that you are continuing your old way of eating. Have you been given any dietary advice since being diagnosed, as some of the foods/shops you mentioned will give you very high spikes?

 

[esonny986]

Hello thanks for your response, I will go and check those apps out shortly. As, for treating hypos, day before yesterday was the 1st time really I'd allowed myself to be that low, mainly because I'm kinda experimenting with the amount of time I wait between insulin and food as the longer I wait the better the insulin works and keeps in me target for longer and I feel more confident when out (for atleast an hour or two anyway). I wasn't below 15-20 before last week becuse of intense panic/fear/anxiety and if I was that low I would (no matter where I was) I would lay down flat so I wouldn't break my ribs or bust my head open again, I would then have 5 dextrose tablets, jelly babies and a suasage roll or sandwhich for about 30 mins and then go and get something else to eat and force myself to eat whilst feeling sick. Now though if its not food time I have some lucozade, or a few digestives or dextro tablets and feel more confident and trusting that that will keep me safe for 30-60 mins unitl I eat. Thats only the second I've heard about the 15 carbs/15 mins thing so I will look that up too. I have checked with finger pricker a few times before when low and it has seemed to be 2 higher than what the sensor tells me but I will start checking again when low. Thanks for your advice. I'm still kicking myself for not seeking support before now, I did try that Bertie about 9 months ago but, I was too angry to listen or communicate effectively

 

[esonny986]

Hi
I just checked my NutraCheck app and they do feature both Greggs and Subway under Eating out - Coffee Shops - plus loads more. It reads to me though that you are continuing your old way of eating. Have you been given any dietary advice since being diagnosed, as some of the foods/shops you mentioned will give you very high spikes?

My eating habits were pretty good I believe even before this started. I really don't like eating full stop most of the time and don't like junk, sweets or choclate. I only eat that when out cause didn't know what to do and fear of hypos. Now I try and have a pasta salad or a sandwhich on me at all times along with dextrose if needed, But sometimes I get caught out and feel I have to eat and the closest place to me is where I go at the time, I will check that app out though, thanks. As far as I know being 3c I can eat whatever as long as I offset with insulin, I'm really skinny also so need to put weight on.

 

[rebrascora]

Good to hear that you are experimenting with pre bolus timing as that is really helpful in ironing out the peaks and troughs which can make feelings of being hypo worse. Most of us find that breakfast time needs a longer period of time between injecting and eating than other meals. For me it is as long as 45mins and it used to be over an hour. Lunch, when I have it and dinner needs just 15-20 mins, for me but everyone is different. Libre is enormously helpful in being able to find the correct timing for your body, so it is great to hear that you are using it in that respect.
Many of us find that Libre reads lower at low levels and 1-2mmols lower is certainly what I often find, so I tend not to panic too much when the Libre shows I am hypo unless it also shows a vertical downward arrow as well, in which case I will take my 15g carbs and then do the finger prick check whilst I am chewing them. Otherwise, I do the finger prick test first to establish if I am actually hypo and need to treat it at all or maybe just have a few grams of carbs to steady my levels.

Not sure if you are aware, but you actually start absorbing the glucose from fast acting carbs through the tissue inside your mouth, so it is actually more effective to chew your hypo treatment really well and swish it around inside your mouth than just a couple of chews and swallowing. It is also important not to eat anything too fatty like a Greggs pasty or chocolate as the fat in them slows down the absorption of the glucose. Same with fibre, so fruit can be slower to release it's glucose and therefore less effective as a hypo treatment, than fruit juice, which hits the blood stream pretty quick.

So pleased you have found us and are finding some of our combined experience here on the forum helpful. Not sure how I would have managed without it, particularly in the early days.

 

[esonny986]

Hi, I don't know If I'm writing things in the right place sometimes. Anyway, being type3c and after someone mentioning the pancreas can sometimes decide to work or not. I noticed yesterday and a couple of times before that when I've engaged in physical activity with a partner every time I eat my bloods drop rapid even though Ive only took half the amount of insulin because of exercise. Would this mean that when intimate it triggers my pancreas to work and the insulin (though low amount) is not needed as it will cause hypos, it really baffled me yesterday and went through nearly two packs of dextro to prevent hypo. Also is it ok to talk about ED on here or this there another site? Thanks for help in advance, your amazingly helpful and wonderful people.

 

[rebrascora]

Hi again. You seem to be using the forum just fine so no worries there.

Yes, it's fine to talk about ED here as it can be a condition associated with diabetes and there are a few threads on the subject. You might want to start a new thread and use ED in the title so that it attracts attention and replies from people who have specific knowledge or experience of it.

As regards your levels dropping low after being intimate with your partner, sex is a physical activity and like any other physical activity it involves your muscles using up more glucose, so they will suck glucose out of your blood more easily to replenish their stores than if you were just sitting still watching the TV or reading a newspaper etc.

There are a few activities which seem to be a bit naughty for dropping levels more than you might expect and catching you unawares, until you figure out how to manage it. Gardening is one of them and oddly some of us find going shopping can often catch us out with a hypo as we leave the supermarket. No idea why that happens as I never find it particularly exertive and most inconvenient if I get stranded in the car park unable to drive home because my levels dropped too low, especially if it is a hot day and chilled goods are getting warm.

Anyway, your hypos after sex are probably more to do with your muscles using up glucose than your pancreas joining the party with extra insulin. If you have active bolus insulin in your system, for example after a meal, then the exercise will make that insulin more effective, so reducing your bolus the meal before can be helpful but doesn't really allow for much spontaneity. If it is unplanned activity, maybe grab some carbs like a biscuit/chocolate bar (I'm sure chocolate can be incorporated into the activity in a pleasurable way 😉) to top your levels up in advance or during and monitor levels closely afterwards making sure you always have quick acting carb to hand. You will slowly figure out what works best for you but it is a case of trial and improvement. Good luck!