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Update after consultant appt

D

dannybgoode

Well-Known Member
Relationship to Diabetes
Type 2
So, saw the consultant for the first time and it was very interesting to chat through a few things.

Of particular note is she is very keen for me to try Metformin. Her perspective is that insulin won't do anything to push my diabetes into remission, if it is possible to do so, whereas Metformin - coupled with my training, perhaps some weight loss etc could do. It would also remove all the downsides to insulin and in particular that I cannot really train safely on it.

Libre is a non-starter at the moment as the 8x FP tests, to strictly 'tick the box' you have to be instructed by the care team and apparently needing to do it to monitor whilst exercising doesn't count. To be fair, she did say she would ask but it looks at unlikely at this stage. Also, she is correct - if I don't at least try Metformin or some other non-insulin treatment, I will never know whether it would actually work for me.

She did suggest I stay on insulin for the next few months and have a think about trying Metformin in the meantime however this would impact me more than trying Metformin and seeing what happens. So I have agreed to give it a go and if it doesn't work for me then I at least know that.

So, I am going to be back in to see the DSN ASAP to look at weening off the insulin, starting Metformin and exploring the NHS Pathway to Remission and see where we get to. If it doesn't work I will be in a better position to explore options for staying on insulin, if it does work and I can push it into remission then that would be brilliant so I am prepared to give it a go...
 
dannybgoode said:
So, saw the consultant for the first time and it was very interesting to chat through a few things.

Of particular note is she is very keen for me to try Metformin. Her perspective is that insulin won't do anything to push my diabetes into remission, if it is possible to do so, whereas Metformin - coupled with my training, perhaps some weight loss etc could do. It would also remove all the downsides to insulin and in particular that I cannot really train safely on it.

Libre is a non-starter at the moment as the 8x FP tests, to strictly 'tick the box' you have to be instructed by the care team and apparently needing to do it to monitor whilst exercising doesn't count. To be fair, she did say she would ask but it looks at unlikely at this stage. Also, she is correct - if I don't at least try Metformin or some other non-insulin treatment, I will never know whether it would actually work for me.

She did suggest I stay on insulin for the next few months and have a think about trying Metformin in the meantime however this would impact me more than trying Metformin and seeing what happens. So I have agreed to give it a go and if it doesn't work for me then I at least know that.

So, I am going to be back in to see the DSN ASAP to look at weening off the insulin, starting Metformin and exploring the NHS Pathway to Remission and see where we get to. If it doesn't work I will be in a better position to explore options for staying on insulin, if it does work and I can push it into remission then that would be brilliant so I am prepared to give it a go...
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You gotta do what you gotta do. If you drive? Don’t forget to let DVLA know when/if your off insulin.
 
Shame about the Libre and I don't know why they wouldn't count testing before, during, and after exercise (seems a bit harsh to me, but I guess it's down to the cost) - Good luck with the Metformin when you go on to it - love your positive attitude 🙂
 
mashedupmatt said:
Shame about the Libre and I don't know why they wouldn't count testing before, during, and after exercise (seems a bit harsh to me, but I guess it's down to the cost) - Good luck with the Metformin when you go on to it - love your positive attitude 🙂
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I can’t help the feeling it’s a bit of a “cop out” on the consultant’s part, myself. Especially with the intended change in regime? (Monitoring of.)
 
mashedupmatt said:
seems a bit harsh to me, but I guess it's down to the cost
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Cost/NHS budget was mentioned 😉. And as I say, she did offer to check to be sure.

However, I am happy to give things a try and if I can beat this thing then fantastic. If for any reason I need to stay on insulin long term then I will be revisiting this area for sure!
 
dannybgoode said:
Cost/NHS budget was mentioned 😉. And as I say, she did offer to check to be sure.

However, I am happy to give things a try and if I can beat this thing then fantastic. If for any reason I need to stay on insulin long term then I will be revisiting this area for sure!
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Definitely - if you are on insulin long term you should be precribed a CGM as a matter of course (regardless to type of Diabetes) in my opinion
 
dannybgoode said:
Cost/NHS budget was mentioned
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Sadly I am thinking that cost is affecting consultant’s decisions more and more. As far as I am aware, looking at NHS drug tariffs, CGMs cost the NHS around £35 each, insulin seems to average around £40 for a pack of 5 x 3ml cartridges - compared with 28 Metformin tablets costing about 64p. (Some of these figures may be out of date now, but the differences and magnitude of costs I think illustrate the scale).

But, you have a great positive attitude and at least you will know one way or the other whether Metformin works for you or not. It sounds as though you will have support to resume insulin if that is what you need after a trial on the Metformin.

When coming off insulin was mentioned to me, my DSN said they would keep me on CGM to closely monitor BG so if you’re not able to do this then it may be a good idea to at least keep fingerprick readings before and after eating, waking, bedtime, etc. so that you have a record of whether the Metformin is effective in keeping your BG within range. If it isn’t then you will at least have some real data to state your case.
 
dannybgoode said:
It would also remove all the downsides to insulin and in particular that I cannot really train safely on it.
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I do hope the metformin works, it will be loads easier in terms of mental burden that using insulin. If it doesn’t though, you can safely train on insulin… there’s loads of positive sportspeople examples out there
 
Let us know how you get on with the switchover.

Fingers crossed it’s a smooth transition, and your metabolism responds well to any weight loss with a bit of a pancreas ‘reboot’.
 
Hope the changes work for you @dannybgoode and that you are able to safely train. Getting your diabetes into remission would be a great outcome. Wishing you well on your future plans. :star:
 
Lucyr said:
I do hope the metformin works, it will be loads easier in terms of mental burden that using insulin. If it doesn’t though, you can safely train on insulin… there’s loads of positive sportspeople examples out there
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everydayupsanddowns said:
Let us know how you get on with the switchover.

Fingers crossed it’s a smooth transition, and your metabolism responds well to any weight loss with a bit of a pancreas ‘reboot’.
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Thanks both.

I am very happy to give it a go and see how I get on. The resistance to trying Metformin is more psychological than anything else. I had really horrendous ulcerative colitis - having to go to the toilet 30-40 times a day horrendous - and the thought of having symptoms even similar if not as bad put me in a panic.

The issue with training on longer runs (anything over 30 mins) is I need to know what my BG is to be able to fuel appropriately. Stopping every 20-30 mins to FP just isn't practical nor would be particularly helpful. I will see where I get to though.

Maybe being pushed a bit into trying Metformin will turn out to be a good thing if it does turn out to be useful.
 
dannybgoode said:
I am very happy to give it a go and see how I get on. The resistance to trying Metformin is more psychological than anything else. I had really horrendous ulcerative colitis - having to go to the toilet 30-40 times a day horrendous - and the thought of having symptoms even similar if not as bad put me in a panic.
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Ask for the slow release one, doesn’t have any side effects at all for most people
 
dannybgoode said:
The issue with training on longer runs (anything over 30 mins) is I need to know what my BG is to be able to fuel appropriately. Stopping every 20-30 mins to FP just isn't practical nor would be particularly helpful. I will see where I get to though.
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That wouldn’t be every single run though, it would only be whilst you found what worked, then you’d just do what works and stop if you were unsure and test. CGMs are pretty new developments, the vast majority of current adult T1s will have probably still lived more time without a cgm than with one. They’re nice but they’re by no means essential for safe exercise. People exercised ok on insulin before them.
 
Eternal422 said:
Sadly I am thinking that cost is affecting consultant’s decisions more and more.
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I kind of get that to an extent. If a 64p drug does work for me then with leave me on a £40 one? Sadly the NHS is sorely underfunded so patient preferences need to be balanced with available money.

My resistance to trying it is simply down to fear and my consultant made some good points about how, if it does work for me, that it's the better route than insulin.

She also made it clear that if I did have an adverse reaction I could just stop it at any time and that I'll be staying on insulin as well for a time so I have nothing to lose by giving it a go.

Just after everything I've been through medically already and then being told it was likely T1 and I'd be going x route, getting used to the whole insulin regime and doing well on it, then being told actually no, it's T2 so we want to try another etc was all a bit overwhelming.

Having slept on it though I'm determined to give it a real go and see if I can't get it into remission. At least then, best case scenario I do, worst case I'm back to where I am now.

And yes, I'm going to stay FP testing for the foreseeable to make sure the changes are working out.
 
dannybgoode said:
I can't take slow release medication due to my ileostomy. Things pass through me quicker than people without one so it's a non-starter unfortunately.
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ah yes, if metformin has side effects then would be an option to swap to a different tablet without those side effects then
 
Lucyr said:
ah yes, if metformin has side effects then would be an option to swap to a different tablet without those side effects then
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Yes, the consultant was very open to varying things.

Initial sketch of a plan is Metformin, Alogliptin or Sitagliptin and maybe the T2 remission pathway.

If it works I'll be delighted. If not, well I tried...
 
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