Looking for a dietician specialising in Type 1, preferably in London area

[janedent]

Hi. Does anyone know of a private dietitian specialising in Type 1, ideally in the London area? The NHS has given me one appointment, back in March when I was diagnosed, but is resisting giving me a second. There is so much I don't know. I could do with some help.

 

[Inka]

@janedent Your avatar is showing you as Type 2 so you might want to correct that to avoid confusion.

The recommended diet for Type 1 is the same healthy diet recommended for everyone else. However, I’m guessing your concerns are to do with carb-counting?

 

[Bruce Stephens]

The recommended diet for Type 1 is the same healthy diet recommended for everyone else. However, I’m guessing your concerns are to do with carb-counting?

Yes, presumably it's more about how to handle the desired diet rather than advice about what to eat. At least, that's what my appointments were about.

 

[Inka]

Yes, presumably it's more about how to handle the desired diet rather than advice about what to eat. At least, that's what my appointments were about.

Then BERTIE might help @janedent :

Bertie Diabetes

A lot of it is experience, so don’t worry if you feel you’re not on top of things yet. Type 1 is a work in progress and perfection is impossible. We gain experience but being a pancreas is hard, so we’ll never get things 100% right 100% of the time.

 

[everydayupsanddowns]

What did you find most helpful about your first appointment @janedent ?

A lot of learning how to balance insulin and doses for me has been experimentation really. Even suggestions I’d been given about ‘slowly absorbed’ sources of carbs needed to be checked and experimented with, to see if that was the case for me.

Diabetes does seem fiercely individual, and often contrary (I’m looking at you porridge!)

 

[Bruce Stephens]

A lot of learning how to balance insulin and doses for me has been experimentation really.

There's still value sometimes in talking with someone and hearing what they suggest trying. (That was mostly what my appointments involved.)

When I talked about having hypos in the evening dancing tango (basically a walking dance) she suggested trying halving the amount of insulin I used for the meal before. I don't think I'd have considered making such a dramatic decrease, at least not initially though I guess I'd have got there eventually. (She was about right, though.)

 

[rebrascora]

If you are Type 1 then you should be eligible for a DAFNE (Dose Adjustment For Normal Eating) course or whatever your local equivalent is. It is along the lines of the online BERT1E course linked by @Inka above. DAFNE is an intensive education course which teaches you about adjusting your doses but lots and lots more and is usually 4 or 5 days, sometimes as whole week or one day a week over a few weeks. Spending time with other Type 1s in person is as valuable as the course content itself. It is generally run by an experienced DSN and a specialist diabetes dietician, so you would have good access to a dietician for several days through this course and the attendance is usually just 6-8 people, so you have plenty of opportunity to get personal support from the dietician.
Who is supporting you with your diabetes management? Do you attend a specialist diabetes clinic or are you just being treated at your GP practice. Please ask about being put forward for a DAFNE course.

 

[everydayupsanddowns]

There's still value sometimes in talking with someone and hearing what they suggest trying. (That was mostly what my appointments involved.)

Very true!

 

[janedent]

@janedent Your avatar is showing you as Type 2 so you might want to correct that to avoid confusion.

The recommended diet for Type 1 is the same healthy diet recommended for everyone else. However, I’m guessing your concerns are to do with carb-counting?

Thanks for spotting that Inka. I was type 2 when I joined but I've been upgraded! I've updated my profile to type 1.
Yes, it's carb counting I get in a muddle over.

 

[janedent]

If you are Type 1 then you should be eligible for a DAFNE (Dose Adjustment For Normal Eating) course or whatever your local equivalent is. It is along the lines of the online BERT1E course linked by @Inka above. DAFNE is an intensive education course which teaches you about adjusting your doses but lots and lots more and is usually 4 or 5 days, sometimes as whole week or one day a week over a few weeks. Spending time with other Type 1s in person is as valuable as the course content itself. It is generally run by an experienced DSN and a specialist diabetes dietician, so you would have good access to a dietician for several days through this course and the attendance is usually just 6-8 people, so you have plenty of opportunity to get personal support from the dietician.
Who is supporting you with your diabetes management? Do you attend a specialist diabetes clinic or are you just being treated at your GP practice. Please ask about being put forward for a DAFNE course.

Thanks for your reply Rebrascora. I go the the Diabetes clinic at St Thomas's, London twice a year. Appointments feel very rushed though. I did the Bertie online course and asked to be put on the DAFNE course back in March when I got my type 1 diagnosis. Apparently it's a long queue, and they tell me I'm in it (they make so many mistakes that I never quite trust them, but I badger them every so often). I'm looking forward to being in the company of other type 1s, as much as the content of the course.

 

[janedent]

What did you find most helpful about your first appointment @janedent ?

A lot of learning how to balance insulin and doses for me has been experimentation really. Even suggestions I’d been given about ‘slowly absorbed’ sources of carbs needed to be checked and experimented with, to see if that was the case for me.

Diabetes does seem fiercely individual, and often contrary (I’m looking at you porridge!)

 

[janedent]

They put me right on carb counting. I thought you had to count EVERY carb but they said don't count vegetables. So that made life simpler.
By the way, my last HbA1c a couple of weeks ago was 41. I was SO proud. But then the practice nurse at my GP surgery told me that is too low. I'm still not sure I believe him. I notice yours is 42 everydayupsanddowns. What do you think?

 

[janedent]

There's still value sometimes in talking with someone and hearing what they suggest trying. (That was mostly what my appointments involved.)

When I talked about having hypos in the evening dancing tango (basically a walking dance) she suggested trying halving the amount of insulin I used for the meal before. I don't think I'd have considered making such a dramatic decrease, at least not initially though I guess I'd have got there eventually. (She was about right, though.)

Yes, it's suggestions from the medical experts I'm looking for (and also the 'lived experience' experts on this forum. Glad I found you!)

 

[everydayupsanddowns]

They put me right on carb counting. I thought you had to count EVERY carb but they said don't count vegetables. So that made life simpler.
By the way, my last HbA1c a couple of weeks ago was 41. I was SO proud. But then the practice nurse at my GP surgery told me that is too low. I'm still not sure I believe him. I notice yours is 42 everydayupsanddowns. What do you think?

I would review my time in range (assuming you have been wearing a sensor, as most T1s do these days.

The international expert consensus for Time In Range suggests aiming for 70% or more time between 4-10mmol/L. With as little time as possible below 4.0, and even less below 3.0.

The recommendation is no more than 4% below 4, but I’m much happier aiming for 1-2%.

If you aren’t risking lots of low BGs at 41mmol/mol I’d say keep doing what you are doing. Personally if I was regularly hitting 4-5% of time below 4.0 I’d make some adjustments and be happy to spend more time 10+.

 

[janedent]

Thank you everydayupsanddowns. My time in range is usually (and currently) around 88%. 1% is hypos.
I was getting quite a few hypos (ie I'd had about 10 in a week) plus I'd been feeling unusually tired for a few weeks when I saw the nurse, so I suppose that was his reason for saying 41 wasn't good.
I find it odd that hypos often don't show up on the daily graph even though the alarm has gone off.
I suppose that if there is one burning question that's always on my mind, it's: when deciding how many units to take, is it best to err on the side of BS going to high (ie 10 - 12) or BS going too low (3-4)? Not that you can always predict it correctly of course, but I always find myself dithering between 2 numbers..

 

[helli]

I suppose that if there is one burning question that's always on my mind, it's: when deciding how many units to take, is it best to err on the side of BS going to high (ie 10 - 12) or BS going too low (3-4)? Not that you can always predict it correctly of course, but I always find myself dithering between 2 numbers..

I would always err on the side of BG going too high - you can always add extra insulin but you can't take it away.
However, given your doses are relatively low, I would also recommend requesting a half unit pen. These are available or most insulins. However, I am not sure if they are available for the cheaper biosimilar insulins like Trurapi. If this is the case, I would argue that you need a different insulin (e.g. NovoRapid) which can use half unit pens. Otherwise, you are potentially using more insulin than needed and the cheaper insulin is a false saving.

Ooops sorry, I veered off topic there with a bit of a rant. My apologies.

 

[rebrascora]

Do you have a half unit pen for your bolus insulin? I used to dither in that situation and when I got half unit pens it was so much better. I have them for both my bolus and basal insulins, but it may depend which insulins you are using as to whether half unit pens are available for those. The half unit pens are also reusable so better for the environment and the cartridges take up less space in your fridge and some of them have a last dose reminder so that you can check if you really did remember to inject your bolus for lunch an hour ago or whatever. We all have those "did I?" or "didn't I?" moments from time to time and it is so helpful to be able to look at the base of the pen for the answer. If you ask your DSN they should be able to swap you to reusable pens and cartridges and possibly half unit ones depending upon which insulins you use.

Many congratulations on your excellent HbA1c and TIR. Yes, the nurse may well have been concerned about the number of hypos and that is usually what triggers them to comment but there are also higher guidelines for older people because as we get older we are more at risk of injury if we fall and obviously low BG levels can put us at increased risk of a fall. Not saying you are old by any means, but these are the things which HCPs consider.

 

[janedent]

I would always err on the side of BG going too high - you can always add extra insulin but you can't take it away.
However, given your doses are relatively low, I would also recommend requesting a half unit pen. These are available or most insulins. However, I am not sure if they are available for the cheaper biosimilar insulins like Trurapi. If this is the case, I would argue that you need a different insulin (e.g. NovoRapid) which can use half unit pens. Otherwise, you are potentially using more insulin than needed and the cheaper insulin is a false saving.

Ooops sorry, I veered off topic there with a bit of a rant. My apologies.

Yes, I did wonder about a half unit pen. I'll ring the clinic and ask. I'm already on Novorapid.
Thank you.

 

[helli]

Yes, I did wonder about a half unit pen. I'll ring the clinic and ask. I'm already on Novorapid.
Thank you.

You may find a half unit pen useful for your basal too. I think on another post you mentioned you recently reduced your dose from 4 to 3. Percentage wise that is a large drop and you may benefit from 3.5 units, for example.

 

[janedent]

Do you have a half unit pen for your bolus insulin? I used to dither in that situation and when I got half unit pens it was so much better. I have them for both my bolus and basal insulins, but it may depend which insulins you are using as to whether half unit pens are available for those. The half unit pens are also reusable so better for the environment and the cartridges take up less space in your fridge and some of them have a last dose reminder so that you can check if you really did remember to inject your bolus for lunch an hour ago or whatever. We all have those "did I?" or "didn't I?" moments from time to time and it is so helpful to be able to look at the base of the pen for the answer. If you ask your DSN they should be able to swap you to reusable pens and cartridges and possibly half unit ones depending upon which insulins you use.

Many congratulations on your excellent HbA1c and TIR. Yes, the nurse may well have been concerned about the number of hypos and that is usually what triggers them to comment but there are also higher guidelines for older people because as we get older we are more at risk of injury if we fall and obviously low BG levels can put us at increased risk of a fall. Not saying you are old by any means, but these are the things which HCPs consider.

The half-unit pen is a great idea. And yeah, falls have been mentioned by the nurse. I didn't tell him that I bomb around London on a bicycle everyday. Don't want to worry him!