Who has the expertise in Type 1 and low carb?

[AtkinsMo]

Good Morning

I have a friend who is in danger of losing his toes and in great pain. He has been diabetic for 55 years, since a young man, for many of those years, I think, well managed in terms of standard diabetes management.

His medical team in the UK “Don’t seem to do anything or suggest anything”.

Does anybody have any experience of changing to LCHF at this stage, I could give him advice and guidance on the diet aspect, but I have no knowledge whatsoever of the adjustments to insulin required. I think his current insulin regime is based on experience rather than testing etc, although I know that he does test regularly as he often tells me his readings.

I did think of just saying, join diabetes.co.uk, but I think he might find it a bit overwhelming, I don’t think he’s into forums, Facebook etc.

I have the Bernstein book at home, but I am in Southern Spain for the winter and can’t access it, and I think that maybe he would find it heavy going anyway. He is based in Manchester, he is just here on holiday though it might have to be foreshortened as he is in so much pain.

Does some sort of simple guidance exist of how to plan basal and bolus insulin injections, and how to taper them down as adjusting diet? If somebody has the expertise, I could maybe give him a quick tutorial of forum use and get him to set up an account, for him to be able to get advice from knowledgable and experienced people, but I don’t want to suggest it if it would not be helpful.

 

[tim2000s]

Hi @AtkinsMo - before suggesting he jumps into that, has he done the DAFNE course or looked at http://www.bertieonline.org.uk?

It's imperative that he learns how to manage his insulin and before I'd suggest moving any type 1 who has been type 1 for as long as this person has to low carb, they need to know, themselves, how to manage dosing. In all fairness, your quote:

He has been diabetic for 55 years, since a young man, for many of those years, I think, well managed in terms of standard diabetes management.

probably isn't that accurate - the reason I say this is that I know a fair number of long term T1s that have been well managed who are not suffering with the kind of issues your friend is, and if his insulin management is based on experience rather than testing, then he is likely to have fairly widely fluctuating glucose levels and moving on to a diet very low in carbs will result in hypos.

Can I suggest that you point him at BERTiE first up and see what he makes of that and also do it yourself to understand what he will need to do with insulin, before making any suggestions about changing diet, because he is going to need your help to change his habits.

 

[x Carol x]

@AtkinsMo He might like to watch Dr Bernstein's diabetes university on youtube. I think he says everything on there that's in the book plus lots more.

 

[AtkinsMo]

Thank you everybody for advice. Will pass on everything to our pal, my thought, based on an entirely different starting point, is that he needs to lower high blood glucose and also lower insulin levels - to reduce inflammation, but to be honest I don’t know enough about any of it to offer any meaningful advice, so, as we would say in Yorkshire, “Best to say nowt!

 

[AtkinsMo]

Sorry to report an update, the situation rapidly deteriorated and I just got a phone call yesterday to say he is having a mid calf amputation and day now, and the other leg doesn’t look too good either. He has had an angiogram and there is no hope of saving the limb. I did ask the question, incidentally, he has done the DAFNE course and by his understanding adheres closely to it.

 

[Juicyj]

Hello @AtkinsMo Sorry to hear about your friend. It is pretty difficult to give you advice for your friend without really knowing more which is why we would encourage them to get online and join the site. They also need more support from their endocrinology team - something they need to really focus on and ask for. Doing DAFNE doesn’t guarantee successful self management, a follow up is required to ensure the learnings are being used successfully, also eating low carb doesn’t guarantee successful blood glucose management either, as increased protein can often be harder to manage due to the gluconegenesis process of converting protein to glucose. So hence why if you can get them online they will benefit from support from other members.

 

[therower]

@AtkinsMo . Sorry to hear about your friends problems. One thing that strikes me is that you are relying a lot on what your friend is telling you. Doing a DAFNE course and closely adhering to it shouldn't result in high blood glucose levels and excessive insulin requirements.
I suspect that like many T1's, the day to day management of the condition, even with DAFNE knowledge, can be very tiring and difficult. Personally I know that at times my control isn't as good as it could be purely because " I'm getting by " as it is. It becomes very easy to only see the good meter readings and overlook the out of range readings.
I think before a change of diet, your friend would benefit from going back to square one, act as if he was newly diagnosed and starting afresh. I know from my experience it can be an eye opener to see how lax it's possible to become without realising.
I hope your friend overcomes these recent setbacks and with a caring and supportive friend like yourself he is in a very fortunate position.

 

[AtkinsMo]

Thank you for your replies. Your insights are most appreciated. Long term changes etc do not seem to be on the agenda at the moment, it would seem that vascular surgeons etc are involved with trying to save the other leg.

 

[JoeT1]

I'd just point out that low carb or keto isn't for everyone. It has great effects for a lot of people, no doubt, but some will be utterly miserable on it. Personally, i'm really low carb at the moment, no more than 30g per day, and while I find my blood levels a little easier to manage, I am seeing some ketones as well.....which isn't the best for a diabetic.

Again, totally up to the person involved. Good luck.

 

[librarising]

I am seeing some ketones as well.....which isn't the best for a diabetic.

You appear to be mixing up (a) ketones from ketosis, which are harmless and (b) ketones from very high blood sugars which can lead to ketoacidosis, which are very harmful.
Someone in ketosis has nothing to fear from ketones.
Geoff

 

[JoeT1]

You appear to be mixing up (a) ketones from ketosis, which are harmless and (b) ketones from very high blood sugars which can lead to ketoacidosis, which are very harmful.
Someone in ketosis has nothing to fear from ketones.
Geoff

This is something i'd like to know more about. I am under the impression that ketones, even from being in a state of ketosis, can be of danger to somebody with diabetes. Say for example, my ketones are at 0.8, but my blood sugar is at 6.5....all OK. Say I miscount my meal and my blood sugar rises to 15mmol....How would that be looked upon?

 

[librarising]

This is something i'd like to know more about. I am under the impression that ketones, even from being in a state of ketosis, can be of danger to somebody with diabetes. Say for example, my ketones are at 0.8, but my blood sugar is at 6.5....all OK. Say I miscount my meal and my blood sugar rises to 15mmol....How would that be looked upon?

Here's some info for you
https://drmowll.com/is-the-ketogenic-diet-safe-for-people-with-diabetes/
DKA occurs when your blood sugars are raging out of control. The odd spike doesn't come anywhere near to DKA
Geoff

 

[AtkinsMo]

Was looking for the nice graph that demonstrates the difference between nutritional ketosis (safe and normal) and ketoacidosis (potentially life threatening) and found this really excellent summary of all the good stuff, including the Phinney video.

https://www.alexfergus.com/blog/what-everybody-ought-to-know-about-ketosis

If your ketones are below 3 and your blood glucose is not sky high, you are in nutritional ketosis.

The broadcasts by Tim Noakes at his trial relating to the difference between ketosis and ketoacidosis Are also worth a watch.

If this was me, not my pal, I know what I would be doing, I would be following Bernstein’s advice, but I don’t think he has the motivation, or the commitment to do it, or the understanding to do it without risk, I would make it my full time job to manage it. As it is, even as an inpatient in hospital, his blood glucose is wildly swinging, at one point the day before yesterday it was 24! That can’t be good for healing.