• Please Remember: Members are only permitted to share their own experiences. Members are not qualified to give medical advice. Additionally, everyone manages their health differently. Please be respectful of other people's opinions about their own diabetes management.

Type 3c

B

Billy Bob

Well-Known Member
Relationship to Diabetes
Type 2
Doctors surgery still doesn't recognise type 3C are our GP surgery the only ones ?
 
I was expecting the same answer when I went in a month ago and very pleasantly surprised to hear the nurse say I am of the "select band of type 3c!" Was quite expecting to go through the description o what T3c is 🙂 Still a lot of ignorance out there with regards to 3c :(
 
Hello @Billy Bob,
Sadly, I strongly suspect they aren't the only ones. Is your Surgery's reluctance to recognise T3c causing you any particular problem? Sorry, should have asked first how is Sue getting on?

Is there a particular problem that we might be able to help with?
 
Proud to be erratic said:
Hello @Billy Bob,
Sadly, I strongly suspect they aren't the only ones. Is your Surgery's reluctance to recognise T3c causing you any particular problem? Sorry, should have asked first how is Sue getting on?

Is there a particular problem that we might be able to help with?
Click to expand...
Thanks for your response.
Not really any problems apart from the fact that Sue has a permanent ileostomy stoma and that she may need meds in the future depending on if her pancreas stops producing insulin , Sue saw the professor her consultant at the beginning of January and he was concerned mainly with her blood sugar Hba staying down but was also saying it could start to spike if not monitored properly , also Sue's weight gain and mobility in her upper legs which if she can shed a bit of weight it may help with mobility and sugar levels .
With Sue's ileostomy it is quite hard to cut the carbs out as she is unable to digest high fibre so trying to give her a decent diet is very difficult. He has suggested that Sue could try Monjouro and be closely monitored but the GP will only prescribe it if you are diabetic and have a Bmi over 35 of which Sue is both but the GP doesn't recognise it so now it has to go to a board meeting of Dr's ?
Sue is doing well with her recovery physically but mentally it's a struggle not just because of all her medical issues but because we are both still grieving losing our daughter, Sue's mother and a very close friend of ours .
This is just me having a bit of a rant over our uneducated medical professionals :(
 
Billy Bob said:
With Sue's ileostomy it is quite hard to cut the carbs out as she is unable to digest high fibre so trying to give her a decent diet
Click to expand...
I know every stoma is different however has she tried to eat more fibrous foods? I have an ileostomy (nearly 13 years now) and eat anything and everything - I don't find anything off limits. Ok, some of it doesn't fully digest but most of it does a pretty good job of being absorbed.

Even then, there are some good 'soft' lower carb options - dairy, a lot of meats, fish etc which are worth exploring. Cooked veg - things like carrots, peas, broccoli - is often soft enough also even for those that can't tolerate 'harder' foods
 
Billy Bob said:
Sue is doing well with her recovery physically but mentally it's a struggle not just because of all her medical issues but because we are both still grieving losing our daughter, Sue's mother and a very close friend of ours .
This is just me having a bit of a rant over our uneducated medical professionals :(
Click to expand...

Sorry to hear what a terribly difficult time you’ve been having @Billy Bob

I found the sharp end of the grieving process really amplified and exaggerated even quite minor irritations and annoyances. I don’t know if it will help, but I found some of the mindfulness / breathing exercises helpful in allowing the thoughts to just ‘be’, without them taking over and clouding my whole day.
 
Well rant away, you deserve that much. You both had a rough ride from late '21 for well over a year with both Sue's pancreatitis and gall bladder issues, intertwined with dreadful family losses.

It flashed through my mind whether you should ask someone at DUK for advice or help in explaining to the appropriate person at your Surgery (Practice Manager possibly) that T3c is real and can't be ducked just because they choose to be ignorant. I recall that this is not the:first time that someone at your Surgery has denied the existence of T3c. Is that the same person now? There has to be a way of bringing this problem into the open before something really bad comes out of it.

During working hours DUK's phone no is 0345 123 2399. An avenue to consider?
 
@Proud to be erratic
It seems to be any of the medical staff don't recognise it , we had a meeting with a health coach while she is a lovely chatty girl she was totally out of her depth in understanding Sue's needs but apparently she is going to be Sue's voice at the practice ?
I will give DUK's line a call after Sue's next blood test in a weeks time .
On the plus side that I never mentioned when we saw the professor he said that the necrosis in Sue's pancreas has only taken the tail and the rest of the pancreas looks good and hopefully won't give anymore problems
 
A little update on Sue's HBa1C she has gone up a little from 51 to 53 I know it's only a small increase but I have a telephone consultation for the 24th with a diabetic nurse we'll see how that goes ?
 
My hospital clinic doesn't recognise 3c either so not just GPs surgeries. When I questioned it - why no dropdown option and why am I recorded as Type 1 the doctor told me its just the same and this is at the diabetes clinic.
 
Billy Bob said:
A little update on Sue's HBa1C she has gone up a little from 51 to 53 I know it's only a small increase but I have a telephone consultation for the 24th with a diabetic nurse we'll see how that goes ?
Click to expand...
Hi Billybob sorry to hear of Sue’s current challenges and wish you both well.Good luck on 24th.
Fortunately my GP did recognise it and are very supportive.
Standup although it is a different cause Type 3c has a similarity to Type 1 in that it is usually an insulin deficiency rather than a resistance ( typical of Type 2) but of course there are a couple of additional considerations that need to be taken into account with Type 3c
 
Wendal said:
Hi Billybob sorry to hear of Sue’s current challenges and wish you both well.Good luck on 24th.
Fortunately my GP did recognise it and are very supportive.
Standup although it is a different cause Type 3c has a similarity to Type 1 in that it is usually an insulin deficiency rather than a resistance ( typical of Type 2) but of course there are a couple of additional considerations that need to be taken into account with Type 3c
Click to expand...
For purposes of much of my treatment I agree its close enough but there's variations around digestion and food absorption for me that mean some differences. I also feel just feel the hospital at least should have accurate records even if just for extracting data around your patients. If I did a FOI request or medical research and asked how many type 3c patients do they have the answer would be none which could have an impact in the future around funding/research/resourcing etc.
 
Standup said:
For purposes of much of my treatment I agree its close enough but there's variations around digestion and food absorption for me that mean some differences. I also feel just feel the hospital at least should have accurate records even if just for extracting data around your patients. If I did a FOI request or medical research and asked how many type 3c patients do they have the answer would be none which could have an impact in the future around funding/research/resourcing etc.
Click to expand...
Thank you for replying
I think as you say there is not enough recognised data on type 3C for any of the professionals to access so some are just stabbing in the dark . What we are going to try and discuss is if there is a way forward without meds because with Sue having a ileostomy any tablets pretty much shoot through her system so would not have any effect , we are going to ask about maybe Sue being prescribed with Ozempic, Monjaro or something similar to help her lose some weight and see if that would have a positive impact on her HBa1C ?
All the time we can keep her off having to have meds is what we are aiming for
 
Try reporting GP to PALS
  • First point of contact:
    Always try to initially raise your concerns directly with your GP practice before going to PALS.

  • Contact your local PALS:
    Find the contact details for your local PALS service through the NHS website or by asking your GP practice.

  • What PALS can do:
    They can provide advice on how to make a complaint, help you understand the complaints process, and may be able to facilitate communication between you and your GP practice.
 
Has PALS changed, then? Because they only used to deal with complaints about the hospital. Each individual GP surgery had a person allocated to deal with complaints. I never thought that was best practice, myself.
 
You must log in or register to reply here.
Back
Top