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Update after consultant appt

JITR said:
I thought the aim of the T2 remission pathway is weight loss. Despite your training, do you need to lose weight?
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5kg or so wouldn't go amiss to hit my ideal fighting weight.

I'm 90kg/187cm so marginally 'overweight'.

My consultant thought I may do very well on it. Looking at the main aim it would seem that is remission through weight loss target set for the individual rather than just weight loss.

Nothing nailed on at the moment so I'm keeping an open mind about all options.
 
dannybgoode said:
5kg or so wouldn't go amiss to hit my ideal fighting weight.

I'm 90kg/187cm so marginally 'overweight'.

My consultant thought I may do very well on it. Looking at the main aim it would seem that is remission through weight loss target set for the individual rather than just weight loss.

Nothing nailed on at the moment so I'm keeping an open mind about all options.
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I was 90kg/181cm, now 70kg/181cm.

When my HbA1c came out at 117 with dire warnings from the doctor, I worked out my ideal 'racing weight' was under 68kg.

I think your consultant may be spot on !!!
 
JITR said:
I was 90kg/181cm, now 70kg/181cm.

When my HbA1c came out at 117 with dire warnings from the doctor, I worked out my ideal 'racing weight' was under 68kg.

I think your consultant may be spot on !!!
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Yes - got to be worth trying. The rest she explained it was that insulin is great in that it works. But it is rather crude and just shoves the glucose into cells, including fat cells.

So, it doesn't help really reduce any fat around the pancreas and liver whereas diet, exercise and with the help of meds my body can actually use the glucose more effectively and reduce the fat which should help.
 
Before working out my 'racing weight', I read Professor Roy Taylor's book Life without Diabetes, Type 2. I noted his suggestion that there was no physiological reason why we should not return our weight and waist measurements to what they once were. That was over 50 years ago for me when I was doing a lot of running.

The NHS remission programme stems directly from Roy Taylor and his team's work at Newcastle University since 2005. He gave this talk, Achieving T2D remission, in May 2023 and I suggest you watch it. At the end he says lose weight by any means.

With luck, you will transform yourself.
 
Right, change of plan.

Having done some, admittedly Google based research but finding a number of credible sources including some old threads on here, it would seem that - as I suspected - taking Metformin with an ileostomy is a bad idea due to an increased risk of metformin-associated lactic acidosis.

So, whilst I'm not against the idea of trying things other than insulin, I am against the idea of dying from changing to an inappropriate medication.

Tomorrow I'll put a call into my SSNs - my Stoma Specialist Nurses and see what they say. I can then raise it with the DSNs when I see them at the beginning of February.
 
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I would be nervous if I were you about starting Metformin. It didn’t agree with me when I took it and gave me “tummy problems”. I persevered and more or less tolerated it with bouts of bad stomach episodes, despite it never doing anything to reduce my BGs but I wasn’t very engaged or knowledgeable about diabetes back then!

I’m sure your SSNs will be able to give the correct advice as to whether it’s ok or not.

Good luck!
 
Agree. And it's hammered into you when you have your stoma fitted. Anything that has the potential to increase output should be avoided as it can kill. Like really can be deadly.

Metformin just doesn't seem to be the correct option here however the DS consultant was quite dismissive of my concerns so I was prepared to go along with it.

That said, it's all gone very quiet on that front so maybe she has decided to double-check.

Who knows! All will become clear however I'm erring more on refusing the change now unless I get a an absolute clear 'yes it's fine' from the stoma team.
 
dannybgoode said:
Who knows! All will become clear however I'm erring more on refusing the change now unless I get a an absolute clear 'yes it's fine' from the stoma team.
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It does seem prudent to ensure the different parts of your healthcare support team are comparing notes! Can’t have the left hand not knowing what the right hand is doing!
 
Reading this thread through again, it occurs to me that you perhaps didn't see a consultant but maybe a registrar or junior doctor. No consultant should need to "ask" anyone else about prescribing Libre or other CGM. It is entirely within their remit.
I saw a registrar the second time I visited the clinic and she clearly had very little knowledge of diabetes at that time. I understand that they all have to learn and give her her due, she went across the corridor and asked the consultant about some questions I had that she couldn't answer and in the end I was shown through to see the consultant to discuss it with him. I have always seen or spoken to my named consultant since then. I am concerned that you may have seen someone who was not sufficiently knowledgeable and experienced to make decisions about a more complex case like yours is.

I think you are wise to discuss the Metformin issue with your Stoma nurse. To my mind, a change of diet and particularly low carb has a far more powerful effect on BG levels than Metformin or most other oral diabetes medications but it may be that because of your stoma and presumably reduced ability to absorb nutrients from slower releasing foods like proteins and fats, that you may not be able to go low enough carb for your body to manage. I can't remember, did you get the actual numerical results of your C-peptide test or just someone's interpretation of it?

Getting plenty of exercise is important for your general health as well as diabetes management so in my opinion they are very wrong to discount testing for that from your eligibility to get Libre as that is tantamount to discouraging you from exercising. I suspect they don't want to start prescribing you Libre when the hope is to get you off insulin but I think it is a very poor decision.
I know it isn't cheap but many of us self funded before we were able to get it on prescription.... I used birthday and Christmas money to do it and even on a temporary basis I think it would be helpful although I don't think you should need to. Obviously, if you are able to manage without insulin then there is no real need for Libre, but I think for your own peace of mind, it would be helpful, particularly during this transition period.

The other thing that I wonder is whether you might be Type 3c rather than Type 2. It just niggles at me that your situation doesn't fit with Type 2 and I wonder if you have damage to your pancreas (perhaps from long term steroid use for UC??) which may mean you have limited insulin production left, which is not going to improve with oral meds. Just some thoughts which keep recurring when I read your posts and feel I need to voice them, so that perhaps you can ask more pertinent questions at your next appointment.
 
rebrascora said:
Reading this thread through again, it occurs to me that you perhaps didn't see a consultant but maybe a registrar or junior doctor. No consultant should need to "ask" anyone else about prescribing Libre or other CGM.
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This may be you experience but it is not mine.
As Danny does not fit into the "standard" Libre categories, my consultant would need to ask for special funding. It is not an indication of their seniority just the funding level needed.
I have also met some incredibly great Registrars in my D-Life.
 
rebrascora said:
Reading this thread through again, it occurs to me that you perhaps didn't see a consultant
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No she is absolutely 100% a consultant. I checked her profile before the appointment.

I have put a call into the stoma team and I'll ask the DSNs specifically about MALA when I see them.

And yes, I have questions about the T2 diagnosis overall but that is a discussion for a slightly future date once I've got this first bit sorted out.

Luckily I have the skillset to negotiate and fight my corner. It always makes me concerned for those that don't though and end up on inappropriate treatments.
 
helli said:
This may be you experience but it is not mine.
As Danny does not fit into the "standard" Libre categories, my consultant would need to ask for special funding. It is not an indication of their seniority just the funding level needed.
I have also met some incredibly great Registrars in my D-Life.
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I can't comment about Consultants vs Registrars. But I blatantly "sacked" my 1st Consultant, who I encountered during Covid and who clearly didn't give me any confidence that he knew what T3c meant, let alone understand the differences for me having absolutely no pancreas. He also hadn't bothered to read my history and opened the conversation by asking how I came to be Type 1. The notes following that Consult were erroneous and thus unhelpful; in hindsight blatantly misleading my GP to think I didn't need any more than 4 test strips daily. His successor was a name suggested by my then DSN; he offered solutions and not only delivered none, but I could find no sign that he had made any active attempt to get things underway. I abandoned his (inadequate) services and moved from Bucks to Oxford for my D support - a change that has been brilliant for me.

But I think that interpretation of who can authorise prescribing CGM does not need special funding. Rather the reverse. CGM is now in the gift of a GP, without needing higher authorisation - after the 2022 revise to NG17. The problem starts for @dannybegoode with his revised diagnosis from T1 to T2 and thus he now comes under NG28. I don't know how severely a GP is audited by his CCG or regional equivalent for prescribing CGM such as Libre 2+. It might be that a diagnosis of T3c could help.

I also have constantly had the sense that Danny is more in the T3 categories than T1 or 2, but I don't claim to have the necessary medical background, nor do I know or understand anything more about Danny's medical history than details visible to all of us reading his posts. However, insulin dependent or not, it feels pretty obvious that anyone with a stoma and diabetes has unique challenges that any sensible GP could use their judgement to write a script for CGM. Add in Danny's running and fitness, CGM would only add value to his BG management and thus his lifestyle. My sister has a stoma after surgery and treatment for stage 4 cancer; I have some understanding of her daily (sometimes hourly) challenges and embarrassments.
 
The GP put the ball back in the diabetes centre's court regarding a CGM however if I stay on insulin I'll revisit that with either another GP at the surgery or the team at the hospital.

I am convinced that the consultant didn't sign it off as she thought if she did there would be little incentive for me to trying coming off the insulin and she is very clearly set on getting me on Metformin.

As I say, I really am not adverse to trying other meds. I'd love to be free of insulin too be honest but I'm also frankly terrified at the same time.

It's something I'm going to raise with the DSN next month - the psychological trauma of even potentially facing a bout of diarrhoea when I was going to the toilet 30-40 times a day is really quite severe. Ulcerative colitis could have killed me it was that severe.

Given all of this Metformin just doesn't feel a good fit for me. But, there is of course a chance I don't have any side effects and it may work. So part of me thinks I should give it a go.

My plan is to document my fears, explain them to the DSN and make it 100% clear that I expect to be monitored, checked in on and most importantly believed if I say things are not working out. Be that side effects or Metformin not having the desired impact. I'll monitor my BG very closely during the transition off insulin and if I see numbers rising then I'll be straight onto the hospital.

Of course, things may have changed behind the scenes. I was expecting to have heard from the hospital now following my consultant appt to see a DSN about starting the switch but they've gone very quiet on me.
 
I really hope things work out for you. Metformin sounds potentially problematic for you whereas insulin has no side effects, other than hypos and some planning required. Insulin does give flexibility to handle meals at different times, differing amount of carbs, etc. but an overhead of planning doses and corrections.

I would hope if you clearly set everything out about your concerns the consultant should take that into consideration. It is meant to be an agreed treatment plan according to the NICE guidelines after all.

As you know, I have gone through a similar thing with my consultant, but luckily my DSN was pragmatic and agreed that insulin was the better treatment for me. I’ve now got her letter to my GP on the NHS app where she states that oral meds would likely result in hyperglycaemia, hence the reason to stay on insulin where I am doing well and have good control. I would have thought your DSN would have a similar say over what is the best treatment regime for you to meet your medical needs.

Good luck, and let us know how you get on.
 
Appt with the DSNs tomorrow. No idea what they are going to say - everyone has gone very quiet on me since my appt with the consultant the other week. Not had the usual follow up letter or anything and I was meant to be invited for an appt to discuss moving to Metformin etc and that has not happened either.

I think my appt is with a DSN I have not met before however they all seem very nice so not too concerned about that. Just need to play it by ear I guess and see how I feel about any plans put forward...
 
Good luck! Hope they listen and understand your concerns and work with you on a plan going forward.
 
Good luck for tomorrow! I hope all goes well for you and it is a genuine two way meeting. Let us know how it goes!
 
Hope the appointment goes well @dannybgoode

Keep us posted with developments if you get a chance?
 
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