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Hello from the other side

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
L

LMT1

New Member
Relationship to Diabetes
Type 1
Hi
I’m not sure what to write here this is new to me but thought I would join the forum to meet others and get tips and read reviews etc !
Feel slightly nervous however I have no idea why .
 
Welcome @LMT1 🙂 No need to be nervous - we’re all just normal people. Well, fairly normal anyway😛

How long have you had Type 1? I’ve had it almost 30 years.
 
Hi and welcome

Don't be nervous. You have come to a friendly helpful place where lots of other members face the same challenges as yourself and share our experiences to benefit each other. It is an amazing resource and I am pretty sure you will find it beneficial.

I see that you are Type 1? have you been diagnosed long? Which insulin(s) are you using? Do you manage your diabetes with multiple daily injections (MDI) or an insulin pump? Do you finger prick for most of your readings or do you have Freestyle Libre? .... Hope this isn't sounding like the Spanish Inquisition..... but sometimes it is easier to answer questions than to figure out what to say, so hope you don't think me rude for asking but hoping it will help you get into the swing of it.

Being able to compare notes with others can be really helpful with diabetes and particularly Type 1 as there are not that many of us to meet one in real life, so being able to exchange thoughts and feelings and ideas and tips via the forum is invaluable.
 
No need to be nervous @LMT1, I've found everyone really friendly and helpful. Welcome to the forum 🙂. Sarah
 
rebrascora said:
Hi and welcome

Don't be nervous. You have come to a friendly helpful place where lots of other members face the same challenges as yourself and share our experiences to benefit each other. It is an amazing resource and I am pretty sure you will find it beneficial.

I see that you are Type 1? have you been diagnosed long? Which insulin(s) are you using? Do you manage your diabetes with multiple daily injections (MDI) or an insulin pump? Do you finger prick for most of your readings or do you have Freestyle Libre? .... Hope this isn't sounding like the Spanish Inquisition..... but sometimes it is easier to answer questions than to figure out what to say, so hope you don't think me rude for asking but hoping it will help you get into the swing of it.

Being able to compare notes with others can be really helpful with diabetes and particularly Type 1 as there are not that many of us to meet one in real life, so being able to exchange thoughts and feelings and ideas and tips via the forum is invaluable.
Click to expand...
Thank you for reaching out and messaging me !
Yes I’m type 1 and have been for 17 years . Diagnosed at the beginning of my teenage years so during those years I didn’t really take good care of myself and just was a typical teen . However now married and kids of my own have been trying for a good while to knuckle down and get better control .

I have recently (September ) started with a pump after doing all the courses etc to qualify to get one . However things have not been great and my HBa1c is higher now than ever and the pump has not been working well for me (the particular one I have ). But my diabetic team have called to say I will be getting a new pump in the new year and hopefully that will make a difference. So with very little information on my pump I thought I would get the chance to speak with some people on here and hear reviews etc .

You are totally right I think when you fo find someone with diabetes you are amazed. I must admit After reading your comment had made me feel less nervous and glad that I have joined , I had joined some fb pages However no longer have fb so have lost that platform for speaking with people and getting advice etc .

Oh and I have the libre 2 !
 
Inka said:
Welcome @LMT1 🙂 No need to be nervous - we’re all just normal people. Well, fairly normal anyway😛

How long have you had Type 1? I’ve had it almost 30 years.
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Hi Inka I have had diabetes for 17 years now was diagnosed in my teenage years .

It’s nice to chat to people who understand! Thank you for your message
 
Pleased you are already feeling a bit relaxed about using the forum. Make yourself at home.
Sorry to hear that you are not getting on with your pump. Which one do you have? I am sure there will be people who have experience of it here who can comment. What particular problems are you having with it?
Do you know which other pump they are going to offer you? Hopefully there will be people who can give you a run down of it's pros and cons...... No perfect pump from what I have read, just the one that mostly fits your important criteria.

Great that you have Freestyle Libre. That can really help to shed light on problem areas. I would be very surprised if we can't help you to find ways to improve your HbA1c. There is literally centuries of lived experience with diabetes here on the forum and many of us are actually helping to educate our consultant's and nurses in the practicalities of living with and managing diabetes rather than the theory, which can be quite different sometimes. That might sound a bit arrogant but the thing about diabetes is that it is quite individual and people don't eat the same things or digest them at the same rate or absorb insulin at the same speed or have the same hormones and stress or exercise or countless other factors which make us all unique and what we encourage here is that people become the specialist in their own particular diabetes by experimenting and seeing what works for them rather than just accepting the guidance that the Health Care Professionals or insulin manufacturers tell us. People often join the forum, some with decades of experience and learn simple tips which can make an enormous difference to their management, that their nurse or doctor didn't tell them, probably because they didn't know.... Libre really helps to speed up this whole "learning to be your own specialist" process

Which insulin do you use? And how far in advance of eating a meal do you prebolus? That is probably one of the main factors in reducing spikes and poor "time in range" results and consequently HbA1c..
 
rebrascora said:
Pleased you are already feeling a bit relaxed about using the forum. Make yourself at home.
Sorry to hear that you are not getting on with your pump. Which one do you have? I am sure there will be people who have experience of it here who can comment. What particular problems are you having with it?
Do you know which other pump they are going to offer you? Hopefully there will be people who can give you a run down of it's pros and cons...... No perfect pump from what I have read, just the one that mostly fits your important criteria.

Great that you have Freestyle Libre. That can really help to shed light on problem areas. I would be very surprised if we can't help you to find ways to improve your HbA1c. There is literally centuries of lived experience with diabetes here on the forum and many of us are actually helping to educate our consultant's and nurses in the practicalities of living with and managing diabetes rather than the theory, which can be quite different sometimes. That might sound a bit arrogant but the thing about diabetes is that it is quite individual and people don't eat the same things or digest them at the same rate or absorb insulin at the same speed or have the same hormones and stress or exercise or countless other factors which make us all unique and what we encourage here is that people become the specialist in their own particular diabetes by experimenting and seeing what works for them rather than just accepting the guidance that the Health Care Professionals or insulin manufacturers tell us. People often join the forum, some with decades of experience and learn simple tips which can make an enormous difference to their management, that their nurse or doctor didn't tell them, probably because they didn't know.... Libre really helps to speed up this whole "learning to be your own specialist" process

Which insulin do you use? And how far in advance of eating a meal do you prebolus? That is probably one of the main factors in reducing spikes and poor "time in range" results and consequently HbA1c..
Click to expand...
The pump I’m currently on is the Accu check solo which I have found very little information about before getting and still very little information to date. However after a few weeks of the diabetes team going back and forth with Roche to get advise for users they have called and said they will change my pump as it’s not anything I myself am doing . Currently on novo rapid. Take insulin 10/15 min before meals and also was asked to split some of my doses over a period of 15 min if eating larger carb contained meals . Have tried bigger cannula’s however my pump seems to work sometimes and not others have been re - siting it when high bloods have appeared and now having to inject to get the high bloods down within range .

However they have said that the omnipod is a pump they have used for many years and have had excellent results from and very very little complaints about so hopefully the new year will be better and no too long await to get started .

The main reason for changing to pump for me was the early 3am dawn phenomenon which had me waking through the night to inject to curb the high and It was having a knock on effect to my morning if I didn’t. I felt that there had to be an easier way to get this under control.

You are right everyone is so unique in there own way and I think a lot of the time we are a statistic or a previous case and it’s not always that simple ! I feel like 17 years with diabetes and I still learn new things about myself every day !

I would like to speak with some pump users and hear stories and experiences, however I do completely understand that everyone’s options and opinions are their own and what suits them best .
 
I have a Dana RS pump, which I love. It’s the most popular pump at my clinic by far. As you say, people have their own pump preferences and ‘must have’ features. For me, that’s robustness, reliability, good choice of cannulas, faff-free and controlled by my phone. The Dana fulfils all those and you can also loop with it.

Having a ‘bad’ pump can be really stressful. Don’t let it put you off pumping.
 
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Thanks for all that extra info. I can't think of any Roche Solo users but we have plenty of Omni"podders" You might want to post about it in the pumps section of the forum or perhaps @everydayupsanddowns would be kind enough to split this post and move it to the pumps section. With the festive season, it may be a while before it gets much attention but hopefully you will get some feedback.

I can sympathize with your Dawn Phenomenon issue. I am extremely fortunate that mine is lazy and actually I would say that I live with it's much more sociable sibling "Foot on the Floor" syndrome, so I can inject for it before I get out of bed.

As regards pre bolusing and splitting doses, do those timings work for you because there are some of us that need much longer prebolus time. I needed 75mins with NovoRapid at breakfast which I know is extreme but it was having to fight against my strong DP/FOTF and 20-30mins at lunch and dinner but now it's down to 45 mins with Fiasp at breakfast and about 20-25 mins the rest of the day.
Many people split their dose by an hour or more for large carb rich or fatty meals like pasta with a cream sauce or pizza. 15 mins seems a very minimal split to achieve anything much but obviously fine if that works for you, but don't be frightened to experiment with extending that timing if it looks like it isn't enough.
What I am saying is that these suggestions or guidelines from DSNs are a cautious approach and are largely influenced by guidance from the manufacturers, but experimenting on your own body is the only way to figure out the best approach for you. My consultant was horrified that I prebolused 75 mins in advance of breakfast but that was what my body needed and he couldn't argue against my graphs showing that it worked for me. I am sure he would be equally horrified to know I still prebolus 45 mins with Fiasp but again it works for my body and I know of one other person on the forum who needs a similar timescale, so whilst extreme it works well for us. Most people are not encouraged to experiment on themselves and so they just follow the "basic" advice they are given. Their diabetes management could be so much better if they learned more about how their own bodies respond and I think Libre certainly opens up the opportunity to do this more easily and safely.
 
Currently using DASH pump, cant fault it & handset is like small mobile phone. In fact could be mistaken for one which is good for younger generation who are uneasy about showing off pump in public.

Pods are just same as before but only work with DASH system not PDM.
 
Welcome to the forum @LMT1

Sorry to hear you have been having a difficult time with your pump start. :(

Is this your first pump? I’m not quite sure how the solo works infusion-set-wise, but my first 6-9 months on the insulin pump were a patchy affair, until I had been able to experiment with various lengths and angles of infusion sets, until I had found the right one for me.

Set changes

Because no two days with type 1 diabetes are the same. Except when they are. The ups and downs of life with T1D.
www.everydayupsanddowns.co.uk www.everydayupsanddowns.co.uk

Do you have options with the Solo? Angled vs straight was the clincher for me 🙂
 
everydayupsanddowns said:
Welcome to the forum @LMT1

Sorry to hear you have been having a difficult time with your pump start. :(

Is this your first pump? I’m not quite sure how the solo works infusion-set-wise, but my first 6-9 months on the insulin pump were a patchy affair, until I had been able to experiment with various lengths and angles of infusion sets, until I had found the right one for me.

Set changes

Because no two days with type 1 diabetes are the same. Except when they are. The ups and downs of life with T1D.
www.everydayupsanddowns.co.uk www.everydayupsanddowns.co.uk

Do you have options with the Solo? Angled vs straight was the clincher for me 🙂
Click to expand...
Hi thanks for the message

Yeah first time pump user ! Was so excited and still think it’s great I just need to get it singing to my tune then all will be fine .

Unfortunately the cannulas are straight and I have tried various sizes .
Sometimes the hand set device looses signal and shuts down ( they had mentioned that maybe it had been too near my phone … although still does this when no where near my phone ) the last bit of advice was to split a 5 unit bolus …. ( I understand when it’s high amounts to split the dose but surely 5 units … the pump could deliver with no issue ?) the problems are endless to be honest I feel like I’m injecting more and wasting money and resources because it’s not working to the full potential that a pump should ie 3 days of pumping. My diabetes team are brilliant and regularly check up on my results phone and check in a lot which has been great.
They have said that all of the patients been put on the solo it’s been endless complaints and all the same .

I will get my omnipod in January it’s ordered and my training will begin in January I can’t wait to get started.

What pump do you have if you don’t mind me asking ? And what was the difference in the cannula for you ?? Had no idea you could get angled ?
 
I think Omnipod cannulas go in at an angle, so hopefully that will really help. I have problems with all the ones that go straight in at 90-degrees, as they frequently develop kinks or delivery problems during wear. Not every time, but certainly too often for reliable use.

My diabetes guesswork is chaotic enough, without having to wonder whether my insulin is being reliably delivered once or twice a week!
 
everydayupsanddowns said:
I think Omnipod cannulas go in at an angle, so hopefully that will really help. I have problems with all the ones that go straight in at 90-degrees, as they frequently develop kinks or delivery problems during wear. Not every time, but certainly too often for reliable use.

My diabetes guesswork is chaotic enough, without having to wonder whether my insulin is being reliably delivered once or twice a week!
Click to expand...
Oh great that sounds good maybe that’s why I’ve been having issues .

I don’t want to loose faith in the pump after one bad experience .I have a friend on a pump and her results are fantastic she has found one that really suits her .

So hopefully will get my training early in January and be up an running to start the new year

Thanks for the messages I’m glad I have joined the forum everyone seems really nice and all willing to help each other it’s great to see !
 
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