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C-Peptide results

rebrascora said:
Sorry to have hijacked your post somewhat @Eternal422
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No worries at all! So pleased to hear everything went well, so nice to get a good consultant who listens. Sadly mine didn’t and must have missed the point where I said that my HbA1c doubled in the 5 years I was on Metformin for her to suggest coming off insulin now and going onto Metformin! No empathy at all in how any of this affects me mentally, it felt just like an academic exercise without listening to the patient.

It sounds like you are getting some good advice, help and support. So nice to hear all went well for you and like me you can now enjoy Christmas without additional stress and anxiety 🙂
 
@PattiEvans - very interesting to hear about your experiences and it goes to underline that some combinations of technology are better than others and that some can suit one person but not another. This diabetes game very definitely isn’t suitable for a “one size fits all” approach!
 
His only concern with the Isophane options was that they might suffer the same fate as Levemir and be phased out at some point

@rebrascora Wockhardt, who make Hypurin, have promised to maintain the supply of animal insulin, so I think that’s hopeful. Some people can’t use other insulins so Wockhardt are much admired in continuing to produce them to offer the choice we need:

Believing in patient choice
We are the only supplier of animal-derived insulin (porcine, pork derived) in the world. We guaranteed the Department of Health that we would continue to supply the medicine for the foreseeable future, to provide an extremely important choice to those patients who wish to use porcine insulin.
 
@Inka Yes, I read that about Wockhardt when I was doing my homework late last night but didn't want to criticize the consultant, plus any company can go bankrupt of course and stop producing anything, although that seems unlikely. Since they are the largest manufacturer of generic pharmaceuticals in the UK it would be even better if they plugged the gap in the market and started producing a Determir insulin to replace Levemir..... assuming the patent is due to expire soon or perhaps already has.
 
Just looked it up and a pharmaceutical patent is 20 years and it got European approval in 2004, so looks like the patent is up, which might be another reason for Novo Nordisk discontinuing it.
 
I just googled too and there was a suggestion they might (or had) extended it. If the patent had expired this year, I think we’d already see biosimilars.
 
Eternal422 said:
No worries at all! So pleased to hear everything went well, so nice to get a good consultant who listens. Sadly mine didn’t and must have missed the point where I said that my HbA1c doubled in the 5 years I was on Metformin for her to suggest coming off insulin now and going onto Metformin! No empathy at all in how any of this affects me mentally, it felt just like an academic exercise without listening to the patient.

It sounds like you are getting some good advice, help and support. So nice to hear all went well for you and like me you can now enjoy Christmas without additional stress and anxiety 🙂
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Thanks for that. I am really sad and disappointed for you that you didn't have a similar experience to me and I do feel incredibly lucky because I have read enough posts here on the forum to know that many people do not have such a positive experience. I was at least prepared for the worst and thankfully got the best. I think there will be a thank you letter heading to the clinic as I know they got a lot of letters of complaint from patients particularly during Covid when things were rather manic for them.
It turns out, my previous consultant hasn't left or retired but been promoted to the top managerial post within the department and this new consultant has taken over his patients. I suspect this consultant's appointment and approach is a reflection of my previous consultant's values.
 
Inka said:
Interesting article here @rebrascora if you didn’t see it:

pharmaphorum.com

Patients resist Novo Nordisk plan to stop making Levemir

Patient advocacy group APIC has started a campaign to stop Novo Nordisk from following through on a plan to stop making insulin product Levemir
pharmaphorum.com pharmaphorum.com

.
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I knew there were issues and pushback in the USA over it's withdrawal particularly as it was the only basal insulin recommended for pregnant women. Somehow, I can't see them overturning the decision especially now it has been announced that they are doing the same here in the UK nearly a year on from that USA decision, but it does sound like there is hope that a generic may be developed. I wonder if it is worth contacting Wockhardt to express interest in a generic Determir.
 
No, I don’t think they’ll reverse their decision. It smacks of corporate profit maximisation. That article mentioned Ozempic and Wegovy. A cynic would make an apposite comment on those and their profit potential.
 
rebrascora said:
I am really sad and disappointed for you that you didn't have a similar experience to me
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With the consultant, no, but the DSNs are a different world and are so good, very caring, listen to you and explain at whatever level you are happy with, every appointment I learn a bit more from them. I’m very grateful to have easy access to them and still be under their care.
 
Oh wow! Just got this letter from the consultant today to my GP (it was dictated on Dec 17, I.e. before my DSN appointment on the 23rd where we discussed everything and it was agreed to stay on insulin).

I can confirm he has Type 2 diabetes with good C-peptide levels, indicating good insulin production from his pancreas. Furthermore, antibody screening for Type 1 diabetes is negative. In the first instance, I would stop NovoRapid and initiate Metformin 500mg once daily, up-titrating to a maximal dose of 1gram twice daily. I would also incorporate Dapagliflozin 10mg once daily. On review we will consider down-titrate of Levemir dose accordingly and consider a GLP1 agonist if need be.

Amazing! No discussion with me about this massive change in regime, totally out of the blue writing to my GP. I know this has crossed with my discussion on the 23rd with my DSN, so her letter to the GP will put things straight (hopefully).

My C Peptide levels are in the intermediate range and I would question whether they represent a “good insulin production”, indeed the DSN said they were in the grey area below normal but higher than they might expect with a T1. Fair enough my antibody tests are negative, but maybe they would be after 17 years? I can accept T2 as a possibility but just to unilaterally change my regime without any discussion with me really makes me angry.

I am so grateful for my DSN’s attitude, empathy and genuine two way conversation about pros and cons where we jointly decided to stay on insulin alone. If I hadn’t had my appointment with my DSN I guess I would have had the shock of my life if the GP contacted me about this!
 
Surely any treatment regime should be by agreement between yourself and your consultant, GP or DSN with a personalised plan for you as implied in the NICE guidelines.
 
This creates a very awkward situation for your doctor as well as for you. The consultant outranks the DSNs so your GP might be inclined to follow the consultant's recommendation as you are presumably under their care but it sounds like he has made an executive decision without agreement or consultation with you. The DSN's have made their decision in consultation with you so I would hope that would stand. Will you still be under the consultant's care or have you been bounced back to GP care with no further consultant appointments. If you are still under the consultant then the GP may feel they have to go with the consultant's recommendations. I hope I am wrong but I do think it once gain makes your situation quite ambiguous.
 
@rebrascora - the DSN said not to worry about the consultant at our discussion on the 23rd and that she would tell her that we had discussed treatment regimes and would be continuing with insulin. I am waiting to see the DSN’s letter to my GP to state this (as well as the change to Abasaglar and Libre 2+). So I guess I need to wait for that and hope that the GP is ok with the DSN’s letter. If not then I’m going to speak with my DSN again and see if she can get the consultant to agree with the outcome of our conversation.

I am still under the consultant who said that she would see me as planned in a month’s time.

As you say, it once again makes for an ambiguous situation. Just when I thought things had been sorted out!
 
Leadinglights said:
Surely any treatment regime should be by agreement between yourself and your consultant, GP or DSN with a personalised plan for you as implied in the NICE guidelines.
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Exactly, I agree. I just can’t believe the consultant has sent this letter without any discussion nor agreement with me about it!
 
Good to hear that you had reassurance from your DSN that they would square it with the consultant but then the consultant might feel like they have had the carpet ripped from under them and made to look a fool. Of course they should absolutely have agreed a treatment plan with you the patient before writing to your GP. It is a crazy situation, but if the consultant wants to see you in a month then I would assume that is because they expect your medication to be changed and things need reviewing in the short term to see how that change is working out.

It must be so unsettling just when you felt you had it all sorted out!
 
rebrascora said:
It must be so unsettling just when you felt you had it all sorted out!
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It is very unsettling. The DSN also said that my BGs would rise under oral meds with reduced insulin, so that’s definitely something I want to avoid. I find it hard to believe that the consultant just ignored me telling her that when I was on Metformin for 5 years my HbA1c went from 70 to 144. How can she think it would work now? I suppose the Dapagliflozin would remove the excess glucose but surely I would end up risking ketosis as I wouldn’t be getting enough glucose for energy, as the Metformin did nothing for me before?
 
Sounds a bit of a nightmare Tony - stress you could do without as well.

Hopefully the diabetes team work will together and the consultants have a good working relationship with the nurses.

My wife is a nurse and it seems it is they who spot things in patients way before the consultants do and often are trusted to guide the reg's and consultants on day to day care decisions.

It sounds like your DSNs are very much on the ball so assuming they work like my wife's ward does then it should all pan out.

That letter should never have gone out though imo.
 
Eternal422 said:
Exactly, I agree. I just can’t believe the consultant has sent this letter without any discussion nor agreement with me about it!
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That would really grind my gears too @Eternal422

What an unnecessarily difficult position to have been put in, with no chance for discussion, or clarity over the results (especially with the DSN saying the insulin production was low/borderline, rather than ‘good’)

Hope you are able to get it cleared up (again!) without too much extra faff.
 
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