Newbie

[sg295]

Hi all!

I was diagnosed with T1D in May of this year so still fairly new to all this and got a lot to learn!

I wanted to join this forum to talk to others living with T1D so I feel less alone and who might be able to give me some useful advice along the way too.

Wishing you all a lovely Christmas 🙂

 

[rebrascora]

Hi and welcome.

So sorry to hear about your diagnosis and at such a difficult time with Covid making health care more stretched. Have you had good care? You have certainly come to the right place for support and advice as the forum is an absolute goldmine of experience and tips on improving BG management as well as somewhere to have a rant about the frustration or unfairness of it all when it gets on top of you or your BG levels are misbehaving. We all understand those feelings and sometimes it is better to let off steam here than to loved ones who are often well meaning but don't really understand.

Would you like to tell us a bit about how you came to be diagnosed and which insulins you are using and how you are managing so far. The first 6 months are extremely challenging but we can all assure you that it does get easier, especially once your honeymoon period comes to an end.

Do you have Freestyle Libre or are you limited to finger pricking for your levels at the moment? How are you managing hypos or have you not had one yet? Some people are quite lucky like that and others like myself average a hypo almost every day (according to Libre.... but it does exaggerate a bit 🙄) Mostly very mild ones though and I have good awareness so not too much of a problem and I am now very confident of treating them as a result.

Anyway, I look forward to hearing more from you and if you are interested in becoming more involved in the community, there is a thread called the "Group 7-day waking average" thread where a number of us regularly post our waking reading and exchange a bit of news and banter or have a moan about our levels being erratic or celebrate when they have been really good. It is a bit of a virtual coffee morning where there is an interest in the social aspect of each other's lives as well as a place to compare notes on our diabetes.... Anyway..... here is a link to the thread if you are interested....

https://forum.diabetes.org.uk/boards/threads/group-7-day-waking-average.20148/page-4091#post-1130372

We will be very happy to see you there if you fancy joining us each morning. We no longer bother with the average part, we just post our waking reading each day. Feel free to just jump in when you feel like it. Maybe see you there.

 

[sg295]

Hi, thank you so much for your message!

The care I have received has been good but I think the COVID situation has definitely not helped anyone! Still I’m just grateful that it got noticed and I got the help I needed 🙂

Basically I started getting all the classic diabetes symptoms (although at the time I wasn’t sure it was that of course!) I was permanently exhausted, had unquenchable thirst, needing to wee every 30 mins (or less!) and also lost a lot of weight very quickly for no reason. Another strange symptom I had which was a bit more individual to me I think was that I developed this sore at one of the corners of my mouth that wouldn’t go away. I then used Dr Google to try and find out what it was and it said it was called ‘angular cheilitis’ which diabetics are more prone to do to excess sugar in the saliva causing the sore to thrive on the sugar. Went to the drs and a finger prick test plus sugar in the urine confirmed the diagnosis.

I am on MDI and use lantus and novorapid. I do have some pretty big spikes after eating but I do mostly manage to bring them back down quite nicely as long as I have counted the carbs properly and done the correct amount of insulin. I am fine if I can either weigh my food or look at food labels but I am less confident when I have to estimate like eating out at restaurants for example but I’m hoping I’ll get there eventually.

I got a freestyle libre about a month after being diagnosed and honestly it’s been life changing! Most of the time it is very accurate, sometimes gives me weird readings like false lows when I’m actually fine (in the 5s/6s) but mostly it has been great! I always find the first 2-3 nights can be a little temperamental (only at night though, fine in the day) and then it settles down.

I have had a few hypos, especially more recently, but I managed to work out this was caused by eating pasta (always seemed to crash around 1-2 hours after eating it) and also drinking alcohol (either at the time or the following day I seemed to go low). I have now talked to my healthcare team who have helped me with this and it now seems to be improving which is good. I am also very hypo aware (usually feel slightly off even in the low 4s!) which is good. I have been guilty of over-treating a hypo and then swinging back the other way but I think I am getting better at avoiding this too (like I say only 7 months in so still learning!)

Thank you so much for your message, means a lot and makes me realise I’m not alone as it can feel quite lonely and isolating at times! I will check out the link you sent me too!

Have a wonderful Christmas 🙂

 

[Bruce Stephens]

I do have some pretty big spikes after eating but I do mostly manage to bring them back down quite nicely as long as I have counted the carbs properly and done the correct amount of insulin.

The usual trick (which is apparently still not mentioned by DSNs sometimes) is just to inject a bit earlier (so maybe half an hour before we eat). The idea is to try and match when the insulin has highest activity with when the digestion needs it. Unfortunately it varies depending on the food, the person, the time of day, etc. And sometimes it's not practical (not really sensible to do it in a restaurant, because the food may well arrive late). I think we all have spikes, but it's often possible to flatten them a bit.

 

[sg295]

The usual trick (which is apparently still not mentioned by DSNs sometimes) is just to inject a bit earlier (so maybe half an hour before we eat). The idea is to try and match when the insulin has highest activity with when the digestion needs it. Unfortunately it varies depending on the food, the person, the time of day, etc. And sometimes it's not practical (not really sensible to do it in a restaurant, because the food may well arrive late). I think we all have spikes, but it's often possible to flatten them a bit.

Hi,

Thank you so much for your message!

That’s a great idea, thank you, I will give it a go!

And yes the eating out thing is a bit of a nightmare for me at the moment, not saying I don’t enjoy it at all but finding it difficult to enjoy it completely.

Hoping it will get easier though 🙂

 

[Lily123]

Sometimes with pasta it works to do a spilt dose and with the libre giving false lows it may be due to the fact that you could be leaning on your arm or putting pressure on it which can cause something called a “compression low” where the libre will read low because of the fluid in your arm due to the pressure on your arm (hope that makes sense)

 

[sg295]

Hi, thank you for your message!

Yes I spoke to my team about it and they suggested split doses too and it seems to generally work better. I often do that for rice as well which can be another tricky food for me.

Ok yes that’s a good point thank you, I heard people saying about compression lows at night through sleeping on it but I think I am guilty of leaning on my arm at times during the day too so will try to avoid that!

 

[Bruce Stephens]

Yes I spoke to my team about it and they suggested split doses too and it seems to generally work better. I often do that for rice as well which can be another tricky food for me.

Yes. And pizza, maybe because of the fat content. But large meals generally, I think, just because a sufficiently large meal will take a while to digest.

 

[sg295]

Yes. And pizza, maybe because of the fat content. But large meals generally, I think, just because a sufficiently large meal will take a while to digest.

Yes pizza can be tricky as well! I don’t generally experience pizza hypos though, mostly just that it doesn’t come down so well and I sit too high for a while. But yes that’s true, I never really considered meal size to be a factor but thats a good point, thank you!

 

[rebrascora]

As regards the Libre being a bit temperamental for the first few days, some people here find that applying it a day or two before your other one runs out (but not activating it) gives it time to bed in and your arm to accept that a foreign body has been inserted into it and settle down again, so that strategy might be worth trying. The 14 days don't start counting until you actually activate the sensor with your phone or reader, so it is fine to put it on a couple of days early and not lose any lifespan off it. I usually apply it the night before the other one is due to expire and that works well for me but it sounds like you might need a little longer, like a day or two for the tissue surrounding the filament to settle down.

 

[sg295]

As regards the Libre being a bit temperamental for the first few days, some people here find that applying it a day or two before your other one runs out (but not activating it) gives it time to bed in and your arm to accept that a foreign body has been inserted into it and settle down again, so that strategy might be worth trying. The 14 days don't start counting until you actually activate the sensor with your phone or reader, so it is fine to put it on a couple of days early and not lose any lifespan off it. I usually apply it the night before the other one is due to expire and that works well for me but it sounds like you might need a little longer, like a day or two for the tissue surrounding the filament to settle down.

That’s a great idea thank you! Will give that a go 🙂 I also find I seem to get better readings on one arm than the other, not sure if other people experience that too?

 

[rebrascora]

That is interesting and I think that has been mentioned before quite some time ago about a dominant arm being better and it may be to do with increased blood flow in that arm because it is more frequently used and as a result perhaps there is a shorter time for transfer of glucose from blood to interstitial fluid creating better parity in the readings.

 

[everydayupsanddowns]

Sounds like you are doing really well @sg295

From what you say you‘ve got a good team behind you, and it sounds like you have an analytical and experimental approach - all things which will really help you in the long-run!

If you’d like some well regarded sources of information, you might consider ‘Think Like A Pancreas’ by Gary Scheiner, or Ragnar Hanas’s ’Type 1 Diabetes in Children and Young People’ (which is equally suitable for adults).

And keep asking questions and sharing your triumphs and challenges here.

 

[sg295]

That is interesting and I think that has been mentioned before quite some time ago about a dominant arm being better and it may be to do with increased blood flow in that arm because it is more frequently used and as a result perhaps there is a shorter time for transfer of glucose from blood to interstitial fluid creating better parity in the readings.

Ok yes that makes sense, thank you for your explanation of this, really helpful!

 

[sg295]

Sounds like you are doing really well @sg295

From what you say you‘ve got a good team behind you, and it sounds like you have an analytical and experimental approach - all things which will really help you in the long-run!

If you’d like some well regarded sources of information, you might consider ‘Think Like A Pancreas’ by Gary Scheiner, or Ragnar Hanas’s ’Type 1 Diabetes in Children and Young People’ (which is equally suitable for adults).

And keep asking questions and sharing your triumphs and challenges here.

Thank you so much for your kind words, really means a lot! I do try hard to manage it and think I do pretty well most of the time, especially considering I’m fairly new to all this 🙂

And I will have a look into those sources, thank you very much!

I’m actually feeling a bit emotional tonight, not sure if it’s just the realisation that this will be just the first of many Christmases of living with this but just feeling a bit down. I get like that about diabetes sometimes where it just hits me harder than other days but I’m sure we all feel like that sometimes, particularly if having a bad day with BG readings and things.

 

[Lily123]

Thank you so much for your kind words, really means a lot! I do try hard to manage it and think I do pretty well most of the time, especially considering I’m fairly new to all this 🙂

And I will have a look into those sources, thank you very much!

I’m actually feeling a bit emotional tonight, not sure if it’s just the realisation that this will be just the first of many Christmases of living with this but just feeling a bit down. I get like that about diabetes sometimes where it just hits me harder than other days but I’m sure we all feel like that sometimes, particularly if having a bad day with BG readings and things.

I had a piece of advice from someone when I was feeling down because if my diabetes which was that you have survived 100% of your bad days

 

[sg295]

I had a piece of advice from someone when I was feeling down because if my diabetes which was that you have survived 100% of your bad days

Very true! Thank you 🙂
I have a little phrase I like to say to myself:
‘I’ve got diabetes, but diabetes hasn’t got me!’

 

[Lily123]

Very true! Thank you 🙂
I have a little phrase I like to say to myself:
‘I’ve got diabetes, but diabetes hasn’t got me!’

That’s a good thing to remember

 

[sg295]

That’s a good thing to remember

Yes definitely, just try to remind myself of that if I’m not having the best day BG wise!