What a difference....including T3C diagnosis

Status
Not open for further replies.
Mr Happymoose

Mr Happymoose

Member
Relationship to Diabetes
Type 3c
Well, it's been a few weeks now since my diagnosis and things have definitely changed a bit.

My first appointment was with the normal diabetic nurse at my GP surgery. Owing to the other complications I have (Sarcoidosis, Ig-G4 Related Disease, hypertension and the results of whipple surgery) she freely admitted she felt a little out of her depth. When I bought up T3C diabetes, she hadn't even heard of it before but did instantly make a promise to look it up. When I mentioned the Libre system she flatly refused to put me on it, giving me a finger pricking system instead. She did however refer me to a diabetic specialist who works at the surgery one day a week.

That was where things started to change. After the first appointment I was given the Libre 2 sensors on repeat prescription and I have a diagnosis of T3C Pancreatic Diabetes. I'm on Metformin and Dapagliflozin at the moment and between those and some diet changes, I've bought my blood sugar readings down into the recommended levels around 98% of the time which I honestly don't think I could have done anywhere near as quickly without the Libre 2 system allowing me to get an indication of what's going on when I eat.

I'm booked in for a Desmond workshop at the end of the month. I know that there's a lot of people who don't rate it particularly highly these days and I'm interested to see what they say when I bring up T3C, but it's just a day and maybe I'll get something useful out of it.

I'm still working on my diet to lose some weight (Currently at a 110Kg) and trying to get more exercise but the issues caused by the whipple surgery are making that difficult. I'd also like to sue diet to try and reduce the meds which is currently 3x500 slow release Metformin and 1x5mg Dapagliflozin.

I'm definitely feeling a bit better about things, particularly the future outlook for issues possibly bought on by the diabetes.

One question I do have though, when people are changing their Libre sensors, what are they using to clean off the gunk left behind by the adhesive?? That stuff is ON there!!
 
My Libre 2 sensors simply peel off using a fair amount of brute force leaving no residue whatever.
The glue layer remains attached to the bottom of the sensor.
My arm recovers in a few minutes, less with added sympathy.

If the layer remains gunkally attached to your skin, I would suggest a tissue with isopropyl alcohol liquid - soak it on your arm for a minute, and wipe off. Rinse and repeat!
Otherwise, other solvents could be tried.
 
I use baby oil to remove funky bits from sensors which works well.
If I have a Zoff in use that works well too.

I am surprised that they are suggesting a Desmond course, but well done for choosing to go with an open mind. If/when you are put on insulin you could push for a DAFNE course.

Very pleased that you have the Libre, and that your team can then monitor your levels alongside you and this may help to determine the best management of your Type 3c.
 
Oil should do the trick - it gets duct tape off fur so sensor stick-um from skin should have no chance.
 
If anyone's truly concerned about the Official Method of sensor removal (!), the Libre 3 sensor Manual (135-page PDF) suggests on p 48:
Removing Your Sensor
Pull up the edge of the adhesive that keeps your
Sensor attached to your skin Slowly peel away
from your skin in one motion
Note: Any remaining adhesive residue on the
skin can be removed with warm soapy water or
isopropyl alcohol

As often happens, individual people have found methods which suit them better...!
 
I use TacAway wipes to remove the gunk. So glad you have the Libre!
 
Mr Happymoose said:
Well, it's been a few weeks now since my diagnosis and things have definitely changed a bit.

My first appointment was with the normal diabetic nurse at my GP surgery. Owing to the other complications I have (Sarcoidosis, Ig-G4 Related Disease, hypertension and the results of whipple surgery) she freely admitted she felt a little out of her depth. When I bought up T3C diabetes, she hadn't even heard of it before but did instantly make a promise to look it up. When I mentioned the Libre system she flatly refused to put me on it, giving me a finger pricking system instead. She did however refer me to a diabetic specialist who works at the surgery one day a week.

That was where things started to change. After the first appointment I was given the Libre 2 sensors on repeat prescription and I have a diagnosis of T3C Pancreatic Diabetes. I'm on Metformin and Dapagliflozin at the moment and between those and some diet changes, I've bought my blood sugar readings down into the recommended levels around 98% of the time which I honestly don't think I could have done anywhere near as quickly without the Libre 2 system allowing me to get an indication of what's going on when I eat.

I'm booked in for a Desmond workshop at the end of the month. I know that there's a lot of people who don't rate it particularly highly these days and I'm interested to see what they say when I bring up T3C, but it's just a day and maybe I'll get something useful out of it.

I'm still working on my diet to lose some weight (Currently at a 110Kg) and trying to get more exercise but the issues caused by the whipple surgery are making that difficult. I'd also like to sue diet to try and reduce the meds which is currently 3x500 slow release Metformin and 1x5mg Dapagliflozin.

I'm definitely feeling a bit better about things, particularly the future outlook for issues possibly bought on by the diabetes.

One question I do have though, when people are changing their Libre sensors, what are they using to clean off the gunk left behind by the adhesive?? That stuff is ON there!!
Click to expand...
Glad to hear things are going better niw and you have the libre
 
Soap and water and a flannel rubbing like crazy. Followed up by a small amount of body scrub gel. Like to feel my arm is really clean and delight in not having to be careful for a few minutes!
 
Well I'm so pleased for you @Mr Happymoose, given your mixed medical ailments you have achieved so much.

Having Libre 2 is a big relief (even though you aren't yet on any insulin). Are you aware of the limitations of Libre 2? If not let us know and we can point you in the right direction; those limitations are less urgent for you without insulin, but still useful. These are the things about Libre that the manufacturers Abbott don't tell you!

Your time in range is impressive; long may that continue, but don't be disheartened if they fall away a bit. That can happen; it is the basic nature of D that things keep changing.

Now you are officially diagnosed as T3c you might want to add that into your opening display beside you name: go to "Account Details", scroll down to the options for "relationship to diabetes" and tick the T3c box. You have joined a select club within this Forum and we have recently had several new T3c members in recent months. So any other questions ask away there are enough of us now who have broadly got the measure of T3c as well as newcomers. You mention issues still going on since your Whipple; since that was in 2018 could I ask what is still bothering you from that major Surgery?

Regardless of that, its so nice to read about your upbeat approach and successes with your T3c management. Well done. Thank you for updating us. NB: if you (again) were to mention T3c in your title to this thread, that could again catch the attention of several other T3cs, eg @Wendal.
 
Thanks for the kind words folks. As I said, I absolutely think I'd never have started to get a handle on it so fast without both the Libre sensors and the info on this forum and site which has been invaluable. I've tried a little sunflower oil to remove the gunk (I figured that was probably the only oil I had on hand that was suitable, don't think the Teak, Linseed, Tung or Danish oil in the workshop would really be suitable :rofl: ) and it's definitely easier. I'll have a look round for some of the other suggestions on my wanders, thanks all for the tips.

@Proud to be erratic if you could let me know about the limitations of the Libre 2 system, that would definitely be helpful and I'll add the T3C info to my details.
 
Proud to be erratic said:
You mention issues still going on since your Whipple; since that was in 2018 could I ask what is still bothering you from that major Surgery?
Click to expand...
My apologies @Proud to be erratic, I only just read this bit!

I am still having pain around the incision site whenever I cough, sneeze or stretch etc. I also have a low level of upset stomach pretty much permanently now which at a random moment can become full blown nausea. I also struggle a lot with constant fatigue and running out of energy very quickly to the point where I've not been able to go back to work after the surgery (I was a fitter for a company that made fire suppression products). I've had recurring bouts of bacterial overgrowth which can cause some quite intense pain and am in the process finally of being tested for malabsorption that would have been ongoing since the surgery.

Basically, my whipple was for a diagnosis of pancreatic cancer but after the surgery it was found that that was a mistake and it was actually IgG4 Related Disease. From the moment I got the correct diagnosis the support from the surgical/gastro teams dried up almost instantly and I've been fighting to get proper support ever since. I even had to push hard to get the tests for the bacterial overgrowth which is a known and common issue post whipple surgery as is malabsorption.
 
Mr Happymoose said:
Thanks for the kind words folks. As I said, I absolutely think I'd never have started to get a handle on it so fast without both the Libre sensors and the info on this forum and site which has been invaluable. I've tried a little sunflower oil to remove the gunk (I figured that was probably the only oil I had on hand that was suitable, don't think the Teak, Linseed, Tung or Danish oil in the workshop would really be suitable :rofl: ) and it's definitely easier. I'll have a look round for some of the other suggestions on my wanders, thanks all for the tips.

@Proud to be erratic if you could let me know about the limitations of the Libre 2 system, that would definitely be helpful and I'll add the T3C info to my details.
Click to expand...
Morning Happymoose and welcome to the forum even if not under the best circumstances but we are where we are and you will hopefully find it very informative and supportive.
As Roland says there are a few 3cs on here and we are keen on highlighting its awareness as it does have the additional aspects that need attention.
Furthermore it it’s important that we all get an accurate as diagnosis as possible in order to get the best support and also to help increase awareness within the medical community.
I actually think there are quite a number of undiagnosed or unrecognised 3cs out there.
Your TIR is very good and indicates what can be achieved now you are starting to learn more and you should be rewarded with a nice improvement in average BG levels when your next blood test is done.
Interesting that you are currently on non insulin medication as I was put on insulin straight away and am managing fine but possibly could get away with Metaformin etc.
I have been discharged from my local DSN as am getting good control and am happy with everything but being out of the system means that you cannot bounce ideas like changing medication as part of a regular process as easily but will give it further thought.
 
Mr Happymoose said:
My apologies @Proud to be erratic, I only just read this bit!

I am still having pain around the incision site whenever I cough, sneeze or stretch etc. I also have a low level of upset stomach pretty much permanently now which at a random moment can become full blown nausea. I also struggle a lot with constant fatigue and running out of energy very quickly to the point where I've not been able to go back to work after the surgery (I was a fitter for a company that made fire suppression products). I've had recurring bouts of bacterial overgrowth which can cause some quite intense pain and am in the process finally of being tested for malabsorption that would have been ongoing since the surgery.

Basically, my whipple was for a diagnosis of pancreatic cancer but after the surgery it was found that that was a mistake and it was actually IgG4 Related Disease. From the moment I got the correct diagnosis the support from the surgical/gastro teams dried up almost instantly and I've been fighting to get proper support ever since. I even had to push hard to get the tests for the bacterial overgrowth which is a known and common issue post whipple surgery as is malabsorption.
Click to expand...
Roland is in a much better position to comment on post Whipples complications but you may find the possible “ malabsorption “ ( presume you are on Creon) may be improved by dietary changes ( mine certainly was) and that made a huge difference to my “tiredness and lethargy” and basically enabled a complete return to work.
But have to stress I had acute pancreatitis rather than major surgery ( only gall bladder removed which is routine and fairly minor).
 
Thanks for the update @Mr Happymoose

Yes awareness of Type 3c is still quite low in the HCP community - though improving gradually.

Great to hear Libre has helped you so much, and that you’ve been offered it on prescription. One member - @trophywench I think - always used to swear by Vaseline for removing Libre gunk rings. I tend to find soapy water in the next shower and a brisk towelling-off work for me.

Not sure how helpful you will find DESMOND, as I think that is pretty much entirely geared to T2 - but hopefully there might be a few snippets in there that help?
 
Mr Happymoose said:
@Proud to be erratic if you could let me know about the limitations of the Libre 2 system, that would definitely be helpful and I'll add the T3C info to my details.
Click to expand...
Here it is:
forum.diabetes.org.uk

CGM limitations and precautions

Moderator Note: This helpful reply was copied from another thread as it details some of the commonly experienced limitations of continuous glucose sensors. My blood sugar has been in perfect range for days now, but although I haven't changed anything, I'm starting to get very short periods of...
forum.diabetes.org.uk forum.diabetes.org.uk
It is pinned near the top of the pumping and tech section.
 
Since you are solely on oral meds, I think the DESMOND Course might give you some benefit since you are essentially functioning as if T2. That said your current excellent TIR does mean you already grasped the fundamentals of managing your BG. I imagine the main difference should be in T2s are mainly struggling with extremely high insulin resistance despite creating masses of their own insulin; whereas you have impaired insulin production and there will be a limit to how much your insulin production can be enhanced.

You seem to have a similar challenge to @Busdriver60 who is now on a basal insulin only and now considering his options.
 
@Mr Happymoose Great to hear that you are now getting more support and have Libre.

Like @Wendal I am wondering if you have Creon as there is no mention in the list of meds in your signature and this may be a vital missing bit of your treatment. Creon or other PERT (Pancreatic Enzyme Replacement Therapy) enable you to digest the food you eat and get the nutrients from it. If you are not able to digest it properly then you will lose weight and have digestive and bowel problems I believe. If you are not digesting your food it will enable you to manage your BG levels better because the carbs you eat may not be getting broken down and absorbed into the blood stream, so it may be that if you are not currently on Creon and start it, that your levels become less stable.
The need for Creon very much depends on which parts of the pancreas are affected by disease and in your case surgery but if you are losing weight or not gaining weight when you need to, then Creon might be a significant treatment omission that needs rectifying.
 
Mr Happymoose said:
Thanks for the kind words folks. As I said, I absolutely think I'd never have started to get a handle on it so fast without both the Libre sensors and the info on this forum and site which has been invaluable. I've tried a little sunflower oil to remove the gunk (I figured that was probably the only oil I had on hand that was suitable, don't think the Teak, Linseed, Tung or Danish oil in the workshop would really be suitable :rofl: ) and it's definitely easier. I'll have a look round for some of the other suggestions on my wanders, thanks all for the tips.

@Proud to be erratic if you could let me know about the limitations of the Libre 2 system, that would definitely be helpful and I'll add the T3C info to my details.
Click to expand...
You could try nail varnish remover.
 
@rebrascora @Wendal I am indeed on Creon (At least when I can get hold of supplies, but that's a conversation for another day!!) and I only put the diabetes meds in my signature. There's a whole lot more I'm on for the various other conditions which would make my sig hideously long if I were to include them all :rofl::rofl: I have tried all sorts of dietary changes over the years regarding the whipple, but the issues I have seem to be totally random with no real patterns to it at all. The best I seem to get from the consultants now is that I simply have to live with it. I am still pushing the gastro department for better support and treatment, but it's an uphill struggle.

@Proud to be erratic thanks for the link, some interesting stuff to bear in mind there.

Also @Wendal I suspect you're correct about the miss diagnosis of T3c as T2. If I hadn't gone in prepared and mentioned it myself, I definitely had the feeling that there would have been an assumption that it was T2, particularly from the regular nurse who hadn't even heard of T3c.
 
Status
Not open for further replies.
Back
Top