“Our daughter’s need as an individual is not being addressed” – do insulin guidelines need to be more flexible?

Individuality is a core component of managing diabetes. What works for one may not work for another, and flexibility is important. Sometimes though, guidelines can be rigid and as a result individual situations are not catered for.

We were recently alerted to one such example by a father of a young girl with type 1 diabetes. Let’s call him Derek. Derek and his daughter wish to remain anonymous because their situation is ongoing: their local hospital’s pediatric doctor is unhappy about Derek’s daughter’s insulin regimen.

Derek’s daughter was diagnosed with type 1 in October 2016. During a recent insulin pump break, Derek and his daughter managed her blood sugar levels using Levemir (basal) insulin and NovoRapid (bolus).

“We were using Levemir and NovoRapid, with the total daily dose averaging around 12 units a day,” said Derek, who stated his view that “Based on the recommendations of a high-profile American endocrinologist (Dr Richard Bernstein) we split Levemir three times a day with success.”

But Derek and his family, who are UK-based, were informed that UK guidelines recommend Levemir be used twice a day when relevant to large doses. Derek says that twice-daily Levemir did not work for his daughter, who only needed four units per day.

“Levemir in smaller doses has a shorter duration of action, and once- or twice-daily injections is only really suited to the early honeymoon phase with such small doses. We have been using CGM monitoring of glucose levels and we can clearly see the basal holes that twice-daily injections was leaving.”

Derek says his daughter’s diabetes team and pediatric doctor informed them that they were using Levemir in a manner for which it was not prescribed, nor recommended. They were instructed to stop using Levemir three times a day with immediate effect.

Despite Derek’s protestations, he states that the family were threatened with the involvement of social services.

“It is not our intention to put our daughter in harm’s way, far from it! Our daughter has an HbA1c well within the non-diabetic range. What we were doing was clearly working but this was being ignored,” said Derek.

“Our daughter’s need as an individual is not being addressed. It makes no difference whether you need four units total basal from a pump, or four units of basal by one injection or two, or three times or even four times a day; four units is four units. If you can split that in smaller doses to achieve better glycemic control then that should be something that is looked at on an individual level.”

Fear

Derek’s daughter is now back on her pump after four weeks of multiple daily injections, but his concerns remain should his daughter ever want another pump break.

“The threat of social services and child support was lifted when we indicated that our daughter was back on her pump, but our fear now is that they will continue to use this threat in order to ‘exert control’ over us.”

Two weeks ago Derek took his daughter to her diabetes clinic and her HbA1c levels remain excellent.

“My daughter’s HbA1c is 34 mmol/mol (5.3%) which is in the non-diabetic ranges. We have achieved this through following Dr Bernstein’s low carb, high protein approach to managing diabetes.”

For Derek, the battle continues.

“Our doctor still won’t agree with splitting Levemir three ways, even after we came off the pump and used Levemir twice a day so that they could see the basal hole that twice-daily Levemir was leaving.

“We had to compensate for the lack of basal by increasing bolus insulin and corrections which in our minds was more of a risk of lows than the extra small Levemir dose. [Our doctor] couldn’t (or wouldn’t) see what we were talking about.”

Keep your evidence

Derek’s situation is regrettable, particularly because his daughter’s results are impressive, without hypos, and could be argued as justification for three-daily Levemir doses.

Sometimes, discrepancies exist between recommendations and individual management, but if you stand vigilantly by a particular stance then be sure to fight your corner, particularly if you possess evidence of what you’ve achieved.

This is a position many low carbers have faced in recent years: trying to convince their doctor that eating low carb, healthy fats has transformed their diabetes management. Now, low carb is becoming more accepted within medical circles, and people are enjoying success having convinced their doctor that low carb works for them.

Hopefully Derek and his daughter will be able to find a satisfactory resolution too.

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About the author

Jack Woodfield

Jack is Editorial Manager of Diabetes.co.uk. He works hard, plays fair and sleeps whenever possible. He has type 1 diabetes, doesn't mind being called a "diabetic", and once won a talent show for dancing to Dario G’s 1997 hit “Sunchyme”.

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