Sisters bloods are pretty much always high! :(

[charthom]

Hi Everyone,

Im new here and looking for some help for my younger sister. She is 20yrs old and has type 1, she was diagnosed when she was 18 months and was on 2 injections a day (She used to use Humalog) during Nov/Dec 2016 she was changed over to Levemir and Novorapid. She has her Levemir in the morning (Was around 28 and is now at 30, I'm sorry I don't know the exact details for that!) and the Novorapid when she eats, her specialist told her not to count carbs, she tests her bloods before eating and usually has 8 units of the Novorapid, it was going okay for a couple of months but since late March her bloods have been all over the place, she is high more often than not, the past few days she has woken up low, and there are have been a couple of random low bloods but overall she is very high.

She leads an active life, she works full time and I would say 3 out of 5 weekday evenings she is out till late, and weekends she is pretty much out doing her own thing, she never gave herself time to adjust to the new insulin, she carried on like normal and doesn't have much rest time.. Could this be an issue?

Its making her feel really bad, she says she feels ill, she is now just fed up and wants it sorted, she has tried to call her specialist for help but hasn't been able to reach her, I just wondered if there was anyone else out there who is or was in the same position who could help, I don't know what else to do, I have told her she should try and relax more, keep a more regular eye on her bloods but I don't know if that will actually help?!

Thanks in advance! x

 

[paulliljeros]

Hi @charthom Welcome to the forum. If your sister really wants to sort things out, the first and best step would be to join herself, as it's much easier to understand the situation first hand, however, I'm sure everyone will be willing to try and help you as well.
Do you know why her specialist advised against counting carbs? It's a fundamental requirement to control, so I wonder if there is a specific reason. I was told that many years ago, because I was so poorly controlled, my care team thought it was best to make it as simple as possible, and decided just getting me to take insulin would be a significant achievement! IMO, Your sister needs to do a basal test, work out her I:C ratio and correction factors. To do this, she needs to start understanding and counting carbs, do lots of blood tests and take insulin at the right times.
It sounds like lots to do, but once she gets her head into it, it simplifies life like you wouldn't believe. Consider purchasing "Think Like a Pancreas" or alternatively "Sugar Surfing" (both available on amazon) for her. If she can afford it, she should look into Dexcom or Libre CGM as this will make the whole process infinitely easier!
Sorry for the essay, but just did a quick brain dump as I have been in her situation, and 20 years later am paying the price. I wish I had done something about it 20 years ago, but hey ho, you live and learn! Good luck, and happy to help if you want to ask questions.

 

[novorapidboi26]

education is what she needs on the insulin regime she is on.....

carb counting is essential, dose adjustment is essential....

she or you should esquire at her clinic for available courses...

 

[charthom]

Thanks both for your replies.

paulliljeros, she has her own account I just wanted more of an understanding myself about it, she is trying to contact her specialist for the 3rd time this week and I think she was just a bit fed up so I decided to do a bit of research. The specialist never gave a reason why she shouldn't carb count, just said that for now she is just to give herself 4 units of Novorapid before eating. I spoke to her about an hour ago and her BG was 18, her machine told her to have 3 units. We feel like we have been left in the dark with it all, we were given the insulin and the machine and left to our own devices and now when it feels like its not working we have no one to ask for advice! I worry for her being this high all the time, as you say it isnt good for you and she will pay for it later in life if it isn't dealt with !

Thanks novorapidboi26, I knew carb counting was needed by thought a specialist would know better than me so went along with it. Hopefully we will get in touch with her specialist who will help us!

 

[azure]

I second all the above - good control simply isn't possible,without carb counting. If your sister wants to stick to fixed doses of Novorapid for meals, then she can still count carbs to make sure she has the same amount for each meal each day (note that the right amount of carbs for each meal may vary depending on what meal,it is). That makes things simple.

I also thoroughly recommend the book Think Like A Pancreas. It's fantastic!

 

[Daibell]

Hi. Yes, she needs to carb count and I'm amazed any 'specialist' would advise otherwise. My DN started me on carb-counting as soon as she started me on Levemir/NovaRapid. That Basal level seems quite high? Can I ask what her BMI is and whether she has a bit of excess weight? When on insulin it is important to keep the carbs under control to avoid weight gain. Has she checked that her Basal balance is right? There are various approaches to doing that but it is important to do that and then adjust the Bolus appropriately.

 

[charthom]

Hi. Yes, she needs to carb count and I'm amazed any 'specialist' would advise otherwise. My DN started me on carb-counting as soon as she started me on Levemir/NovaRapid. That Basal level seems quite high? Can I ask what her BMI is and whether she has a bit of excess weight? When on insulin it is important to keep the carbs under control to avoid weight gain. Has she checked that her Basal balance is right? There are various approaches to doing that but it is important to do that and then adjust the Bolus appropriately.

Her BMI is 21.6 (Healthy) she has no extra weight on her at all... That's another issue, she has lost weight!

She has had 5 different specialists in the past 10 years, we wanted to have her put on Levemir 6 years ago but they wouldn't do it, said she was fine on just 2 injections a day. The specialist said "don't carb count just do 4 units before every meal, I will call in 2 months and see how you're getting on" she never called and hasn't returned any of our called!

 

[charthom]

I also thoroughly recommend the book Think Like A Pancreas. It's fantastic!

Thank you I will get her to have a look at this later tonight!

 

[paulliljeros]

When she gets hold of the specialist, she needs to arrange a meeting and go to it with a list of questions written down. I had problems with specialists at a previous clinic, but it was because I wasn't taking it seriously, so when I decided to sort myself out, I did the research, and then changed clinics as a fresh start.
Do the Basal test and she should ask for a referral onto a dafne carb counting course, but the problem is there's usually a long waiting list, so consider doing it online, for free, in the mean time. Think of it like building a house. The basal test is the foundations and they need to be right before you build the walls. Carb-counting and insulin:carb doses are the bricks and mortar. They need to be right once you have the foundations. I've not gone into huge details, but have thrown out the keyword sfor you to search on here for, or ask further questions about. Break it down into small, manageable parts, tackling one at a time, and it is all achievable, trust me, I have been through this!

 

[charthom]

Thanks paulliljeros, we have just found out the specialist she usually sees is on holiday so we need to speak to someone else, which is never good... She has just got used to and got to know one specialist and has to explain all this to a new one!

I have spoken with her and we are going to sit down later and start getting it sorted, I honestly thought the specialist knew what she as doing when she said to not carb count but now all I am seeing is how it's a must! We both know nothing about it, we never needed to when she was on Humalog twice and day and it wasn't explained to us when she changed insulin! It's all so overwhelming for me I can only imagine how she feels!

Thank you for your time and help! X