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'Not diabetic enough'!

A

AnnL

Member
Relationship to Diabetes
Carer/Partner
My partner has just returned, very distraught, from an appointment with our surgery's diabetic nurse.

He's been told he is 'not diabetic enough', therefore they cannot/will not prescribe any of the new semaglutide medications.
He has a recorded allergy to metformin but has in the past (in England, we are now in Wales) had great success with Trulicity injections.

We are both horrified that he is being left out in the cold with basic advice about diet which we are already following.
How on earth can someone be not diabetic enough? He has gone from pre-diabetic to diabetic in a matter of three months and it's having serious effect on his overall health, both physical and mental.

We know this refusal is to do with an Welsh NHS policy but surely, is there nothing that can be done apart from wait for him to be seriously unwell or worse, costing the NHS far in excess of the cost of the medication he needs.

I would really appreciate some guidance from anyone in Wales, particularly if you've managed to overcome this postcode lottery.
I am truly desperate to help him.
Thank you.
 
I'm so sorry you're going through this.
I have no advice but I hope someone will be able to help you.
When I moved from Wales to England I noticed my health care improved dramatically. It shouldn't be that way though.
 
JITR said:
Welcome to the forum @AnnL. It would be helpful to know what your partner's blood test result numbers were over the last 3 months (and before if any). Also if he is overweight and whether he has any other conditions.

Why not try diet? It's usually the best way to treat early stage T2D and prediabetes. Here's a simple guide, how does it compare with your partner's diet? Others are Dr David Unwin's diet sheet + this book with a foreword by David Unwin and this article 'What should we eat?'.
Click to expand...
HbA1c has gone from 43mmol/mol in October 24 to 50 in December 24 mmol/mol. I don't have any earlier ones to hand.
Diabetic previously in mid 2000's. In remission approx 2018 - 2022, numbers slowly crept back up largely due to sedentary job and night shifts.

Yes, overweight. Weight makes exercise very difficult. Microvascular disease doesn't help matters. Vicious circle.

Diet on the whole is good, lots of fresh veg/salad, fruit, trying to steer away from UPF's. I cook a lot from scratch. Comfort food is bread though (not white, mainly wholemeal, spelt, sourdough). It's a balance isn't it? Too much focus on what you can't eat makes it all the more desirable and life pretty miserable.
I just don't get the lack of preventative medicine before it's too late :(
 
Hello @AnnL it's really upsetting for you that the Surgery appears so unsupportive:( . I don't have any advice I'm afraid being Type 1 but hopefully you'll get lots of helpful information from the friendly members on this Forum.
 
It does seem unfair that there is a postcode lottery with the implementation of any medication regime however if people don't meet the criteria then their hands are tied.
Even though you say you have a healthy diet there may still be something that can be done on that front which would be enough to make a difference. The increase in Hba1C has happened quite quickly so ir can be easier to turn it round when blood glucose has not been high for a long time.
This link may help you see if there are any ways you could modify the diet to reduce carbs as that is likely to be where some savings can be made. It is based on a suggested no more than 130g carbs per day so you could compare with what he is having at the moment. https://lowcarbfreshwell.com/
 
AnnL said:
How on earth can someone be not diabetic enough? He has gone from pre-diabetic to diabetic in a matter of three months and it's having serious effect on his overall health, both physical and mental.
Click to expand...
So sorry to read about the challenges your partner is experiencing.
I wanted to highlight this point that you made to try and understand it more.
The terms pre-diabetic and diabetic are typically assigned based on HbA1C. Pre-diabetic is a value between 42 and 48 and diabetic is anything over 48. Therefore, a rise from 47 to 48 could change his diagnosis. This is not a big rise and could be considered the same within the margin of error.
As a result, the argument of going from pre-diabetic to diabetic may not be relevant.
Then there are guidelines around what medication can be offered depending upon HbA1C and what has already been tried. Again, if your partner is on the lower end, his HbA1C will not meet the guidelines for some medication. I suspect this is what is meant by “not diabetic enough”.
My understanding is the guidelines are based on things like risk of further complications from high BG against the risk of complications of the medication and other health issues.
We are all different and our local healthcare is different but one near universal thing i read is that people with type 2 get very little support which is often why they end up here. The good news is there are plenty of people here who have “been there”. Some are still “there” but others have turned it around.
As it says at the top of every page “everyone manages their health differently”. So I would encourage your partner’s to read some of the success stories on the forum and the different ways they have been achieved, often through diet.

I realise I am making assumptions that your partner’s HbA1C is on the lower end of the diabetic range. On the other hand, if his HbA1C has increased in three months from pre-diabetic to a higher HbA1C (we have people who were diagnosed with a HbA1C of over 100), I would be concerned that the diagnosis may not be correct: type 2 is usually a “slow burner” whereas Type 1 may come on faster, especially if it comes with weight loss.
 
Hi @AnnL I’m not in wales but what currently is your husband’s BMI & Hba1c do you know ?
 
Hi @AnnL and welcome to the forum - If I'm reading right (correct me if I'm wrong), his HbA1c has risen from 43 mmol/mol to 50 mmol/mol between Oct & Dec 2024? If that is the case then then denying the medication to help control this seems wrong to me (although I don't know the policy in Wales - sorry!) - Definitely worth querying IMO though - good luck with it all and keep strong and try not to worry
 
Hi @anne L and welcome to the forum.

Would your partner have been equally distraught if the DN had treated him as a grown up and explained that diabetes is about how the body controls blood glucose. How good your control is reflected in your Hba1c test result. The higher that number is, the poorer the control.

On the HbA1c scale there are trigger points. The first is a reading of 41. This is an early warning and the best way to react to it is to look at lifestyle changes to stop it going higher and reaching the second trigger point, a reading of 48 - the diabetes diagnosis level. At this point, regular checks come into play, lifestyle change messages are reinforced and the possibility of medication considered. There are no formal trigger points above 48 but as it gets higher the need for remedial action increases. Warning bells will not start to ring until it gets above 60. If it gets towards three figures, then things will begin to happen.

With somebody who is overweight and with an HbA1c around the diagnosis level, then the chances are that losing the excess weight will reset your body's glucose control. It does not matter how you lose the weight. By any standards it is better to do that if you can without the use of medication.

I hope that puts a better perspective on a diabetes diagnosis than the rather silly, "you are not diabetic enough" for a particular drug treatment.

Another point.... you need to get past all the marketing guff when it comes to the "healthiness" of food stuffs. To start with take a top level view and focus on carbohydrate content. Carbohydrate in food is the biggest contributor to glucose in the blood and the less carbohydrate taken in, the less glucose the system has to deal with. So when it comes to bread for example, it really does not matter whether it is white, brown, green, sourdough or any other current trend, if it is made from wheat flour it will all have the same effect on blood glucose.

Its great that you cook from scratch. Means that you have control over the carbohydrate in meals. You can get a long way by rebalancing - smaller portions of stuff with high carbs balanced by larger portions of stuff with lower carbs.

Read around the forum and you will get some pointers.
 
Hi @AnnL, firstly welcome to the forum hopefully you will find information and support here to help you and your partner get through this stressful time.

I note from your second post that your partner has gone from 43 to 50 and I wonder if the link below could help you to get your local diabetic nurse to move their position. The document appears to be current although if not you could ask to see the latest version. As your partner has an issue with Metformin, they should be considering one of the other options listed.

Pharmacological management of Type 2 Diabetes Mellitus Guideline

More widely, I am wondering if the nurse's position is based on the fact that your partner's situation is only just above the diabetic limit and if so whether they feel that exercise and improved diet may be sufficient to address the increase in his HbA1c.

Bread was a major comfort food for me before my diagnosis last year and while giving it up was not overly difficult in some respects, I found that I needed something to take its place. The Freshwell site recommended by @Leadinglights contains a couple of recipes for low carb alternatives. One uses almond flour and mozzarella as the primary ingredients and the other uses almond flour and flax seed (linseed). Other options can be found by searching for keto breads or low carb breads. There is also a recipe for an alternative linseed bread (loaf or rolls) if you search on the forums for low carb bread. This has helped me immensely as I find that grain based loaves including sourdough push my BG up quite high, although normally not out of range.

Hope this provides some help
 
Is he on any medication for diabetes? You need to be on multiple medications with a1c still too high before this can be prescribed so he should be directed towards diet and exercise or an alternative tablet medication
 
Leadinglights said:
It does seem unfair that there is a postcode lottery with the implementation of any medication regime however if people don't meet the criteria then their hands are tied.
Even though you say you have a healthy diet there may still be something that can be done on that front which would be enough to make a difference. The increase in Hba1C has happened quite quickly so ir can be easier to turn it round when blood glucose has not been high for a long time.
This link may help you see if there are any ways you could modify the diet to reduce carbs as that is likely to be where some savings can be made. It is based on a suggested no more than 130g carbs per day so you could compare with what he is having at the moment. https://lowcarbfreshwell.com/
Click to expand...
Many thanks. Have downloaded the Menu planning pdf's which look very useful.
 
Docb said:
Hi @anne L and welcome to the forum.

Would your partner have been equally distraught if the DN had treated him as a grown up and explained that diabetes is about how the body controls blood glucose. How good your control is reflected in your Hba1c test result. The higher that number is, the poorer the control.

On the HbA1c scale there are trigger points. The first is a reading of 41. This is an early warning and the best way to react to it is to look at lifestyle changes to stop it going higher and reaching the second trigger point, a reading of 48 - the diabetes diagnosis level. At this point, regular checks come into play, lifestyle change messages are reinforced and the possibility of medication considered. There are no formal trigger points above 48 but as it gets higher the need for remedial action increases. Warning bells will not start to ring until it gets above 60. If it gets towards three figures, then things will begin to happen.

With somebody who is overweight and with an HbA1c around the diagnosis level, then the chances are that losing the excess weight will reset your body's glucose control. It does not matter how you lose the weight. By any standards it is better to do that if you can without the use of medication.

I hope that puts a better perspective on a diabetes diagnosis than the rather silly, "you are not diabetic enough" for a particular drug treatment.

Another point.... you need to get past all the marketing guff when it comes to the "healthiness" of food stuffs. To start with take a top level view and focus on carbohydrate content. Carbohydrate in food is the biggest contributor to glucose in the blood and the less carbohydrate taken in, the less glucose the system has to deal with. So when it comes to bread for example, it really does not matter whether it is white, brown, green, sourdough or any other current trend, if it is made from wheat flour it will all have the same effect on blood glucose.

Its great that you cook from scratch. Means that you have control over the carbohydrate in meals. You can get a long way by rebalancing - smaller portions of stuff with high carbs balanced by larger portions of stuff with lower carbs.

Read around the forum and you will get some pointers.
Click to expand...
Thank you. Doing our best food/cooking-wise. Glad to have joined this forum. It confirms what some of the things I know and others I don't but will hopefully make the journey a less lonely one.
 
A hbA1c of 50 is barely into the diabetes range, and as long as your husband is actually an ordinary type 2 diabetic it ought to be a simple matter of removing high carb foods from his diet and seeing levels after meals reducing - hopefully down to normal.
Why nurses and doctors cannot suggest this simple trial in the weeks after diagnosis I really do not know but so often it is straight to the prescription pad with no information at all.
It does mean that a test meter is really useful, checking the rise in blood glucose after meals - but for many - me included, eating low carb means no medication is required just a new set of clothes as weight is at last easy to move - sometimes entirely effortless.
 
JimmyBlue said:
Hi @AnnL, firstly welcome to the forum hopefully you will find information and support here to help you and your partner get through this stressful time.

I note from your second post that your partner has gone from 43 to 50 and I wonder if the link below could help you to get your local diabetic nurse to move their position. The document appears to be current although if not you could ask to see the latest version. As your partner has an issue with Metformin, they should be considering one of the other options listed.

Pharmacological management of Type 2 Diabetes Mellitus Guideline

More widely, I am wondering if the nurse's position is based on the fact that your partner's situation is only just above the diabetic limit and if so whether they feel that exercise and improved diet may be sufficient to address the increase in his HbA1c.

Bread was a major comfort food for me before my diagnosis last year and while giving it up was not overly difficult in some respects, I found that I needed something to take its place. The Freshwell site recommended by @Leadinglights contains a couple of recipes for low carb alternatives. One uses almond flour and mozzarella as the primary ingredients and the other uses almond flour and flax seed (linseed). Other options can be found by searching for keto breads or low carb breads. There is also a recipe for an alternative linseed bread (loaf or rolls) if you search on the forums for low carb bread. This has helped me immensely as I find that grain based loaves including sourdough push my BG up quite high, although normally not out of range.

Hope this provides some help
Click to expand...
Unfortunately in Wales, the NHS is lagging behind and if the computer says no, they won't discuss further.
I'll definitely look into alternative breads because that's going to be an issue. Thank you for your suggestions 🙂
 
Drummer said:
A hbA1c of 50 is barely into the diabetes range, and as long as your husband is actually an ordinary type 2 diabetic it ought to be a simple matter of removing high carb foods from his diet and seeing levels after meals reducing - hopefully down to normal.
Why nurses and doctors cannot suggest this simple trial in the weeks after diagnosis I really do not know but so often it is straight to the prescription pad with no information at all.
It does mean that a test meter is really useful, checking the rise in blood glucose after meals - but for many - me included, eating low carb means no medication is required just a new set of clothes as weight is at last easy to move - sometimes entirely effortless.
Click to expand...
Thanks for your reply. He has a test meter, so time to get it out again.
The nurse has suggested low carb as a first plan of attack.
What my other half finds most difficult is night shift food - no professional who he's spoken to about weightloss, and now diabetes, can suggest food which will sustain him through the night when his body craves something to keep him going, rather than a salad and grilled chicken.
Tonight he has salad, homemade asparagus and salmon quiche (posh!) made with oat flour, a banana, apple and orange.
 
AnnL said:
Thanks for your reply. He has a test meter, so time to get it out again.
The nurse has suggested low carb as a first plan of attack.
What my other half finds most difficult is night shift food - no professional who he's spoken to about weightloss, and now diabetes, can suggest food which will sustain him through the night when his body craves something to keep him going, rather than a salad and grilled chicken.
Tonight he has salad, homemade asparagus and salmon quiche (posh!) made with oat flour, a banana, apple and orange.
Click to expand...
If he can reduce carbs then having meals with more protein and healthy fats will help keep him going better than high carb foods, people regard fruit as healthy but unfortunately some fruits are are higher carb than many can tolerate eg bananas, apples and tend tto give them a miss.
Bulking out the salad with something like coleslaw or cheese or some nuts would be a better option than the fruit.
High protein yoghurts or Kvarg deserts are low carb and very filling so he could take those. What about soups, chilli or casserole in a food flask to keep it hot.
You can get low carb pasta made from edamame beans or black bean which can replace wheat pasta with bolognaise or other pasta sauces, home made are best as bought sauces can be high carb.
Strategic testing of meals can be useful, so test just before eating and after 2 hours, aiming at no more than a 2-3mmol/l increase or as levels come down no more than 8-8.5 after 2 hours if it is the meal is too high in carbs.
Make sure the strips are in date and the battery good if iy has not been used for a while.
 
AnnL said:
Thanks for your reply. He has a test meter, so time to get it out again.
The nurse has suggested low carb as a first plan of attack.
What my other half finds most difficult is night shift food - no professional who he's spoken to about weightloss, and now diabetes, can suggest food which will sustain him through the night when his body craves something to keep him going, rather than a salad and grilled chicken.
Tonight he has salad, homemade asparagus and salmon quiche (posh!) made with oat flour, a banana, apple and orange.
Click to expand...
It isn't realy the time of year for salads. On a cold night I often have a stew - whatever meat there is in the fridge, chopped heated up with a bag of Lidl frozen mixed veges with tomato, celery and an onion, in the pressure cooker and a bit of gravy powder. It is done in five minutes, and could easily be taken out in a wide mouthed vacuum flask to keep it hot.
Years ago I tried low carb dumplings with herbs - I found the recipe on the internet - might have been sugar free londoner web site. They were a bit fragile so probably best packed separately and added in just before eating.
I would not have oats, or several pieces of fruit, due to the carb content - they do add up.
I experimented with low carb breads for a while, and you can make some really nice ones - I made a small amount of 'real' bread dough and allowed it to rise once, then mixed up all sorts of low carb flours and milled seeds, with the warm liquid and activated yeast, mixed it in gently and divided it up into small loaves or even muffin tins, allowed it to rise for as long as it took to at least double in size and then baked until hollow when tapped. It froze well, so would be an option to have with packed foods.
 
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