Hello

[Sugarcoated]

Hi everyone.
Hope you are all doing well.
I have type 2 diabetes brought on by having cystic fibrosis. Its called cfrd in cf world.
My hba1c is 63, higher than my usual 56. I always had my diabetes under control somewhat by taking novarapid & exercise.
Unfortunately, of late since starting a miracle cf drug Kaftrio, it has messed up my blood sugars. I'm either running incredibly high, or incredibly low. For instance at 8am i could be 17, but 10 mins later i can drop to 3 & so on. Due to Kaftrio unblocking my pancrease it is shooting out insulin some days & othet days, decides not to work.
Anyway, my worry atm is my toes on my right foot have become swollen & cold. Not painful but aware of tenderness. My big toe by the nail is red. I know diabetes can cause feet problems. Think i could just be worrying over nothing but just want reassurance from people who have diabetes.
Saw diabetic Dr recently (4 wks ago) & he did routine tests on my feet which i passed.
Only thing i can think of that couldbe causing this, is i went cycling Sunday & when i got home my feet were ice cold. But problems started Wednesday evening.
Sorry for the long post but anxiety is alittle high atm.

 

[Sugarcoated]

I have tried to get appointment with GP today but its proving difficult.
Left msg with diabetic nurse but nothing back.
Thanks for reply.

 

[Ditto]

Hello and welcome. 🙂 I hope you manage to get an appointment asap.

 

[everydayupsanddowns]

Welcome to the forum @Sugarcoated

Sorry to hear about the very challenging version of diabetes you are living with

And sorry to hear about the changes you are noticing with your feet too.

Have you got access to any continuous sensing technology? I wonder if a CGM with alarms might be very useful while your BGs and pancreas are behaving so erratically?

 

[Cerigrace]

Hi,
Just wanted to reply as I have CFRD and am also on Kaftrio and have had similar problems. When I started Symkevi and then moved to Kaftrio a few months after, my blood sugars were going erratic as well and I was getting lots of hypos.

I haven't had swollen or red feet but have had tingling fingers and toes when high and shakes when going low (more noticeably so with Symkevi/Kaftrio).

I don't know if you are aware but we are entitled to the freestyle libre sensor on prescription which has continuous monitoring. I would talk to your CF team about it.

I personally have come off insulin as a result of being on Kaftrio and my Hba1c is down to almost pre diabetic levels so am pleased with the effects.

There are a few groups on Facebook of people with CF and quite a few on there have cfrd and are on kaftrio so might be worth you joining one of those. I have found it useful as kaftrio is so new to everyone and it is good to hear what experiences other people have had.

It is hard have CFRD as we kind of fall between the CF team and diabetes team with treating it.

I hope you manage to get things sorted!

Best wishes

 

[Flower]

Hi @Sugarcoated

There is a free 2 week trial of the Abbotts Libre if you meet the criteria and have a compatible smartphone that can be used to read the sensor. Details across the top of the the page here https://www.freestylelibre.co.uk/libre/

That could prove helpful to you to see what is going on around the clock and give you data that could help a request to use Libre.

I would phone and request a podiatry appointment to check out what is happening to your feet and toes. Always best to be over cautious about any foot problems.

 

[Sugarcoated]

Hi sorry only seeing this. Life has been a bit hectic.
I'm starting the libre 2 once my libre runs out on arm. I had my feet checked & they were ok.
Thank you.