More Support, less Advice for Newbies

Forum: "a public meeting place for open discussion." (Websters).

Moving on just a moment from the diet stuff to another example. It is very common for T2Ds on this forum to suggest self-testing. IIRC it is also mentioned in daisy1's advice. I don't self-test, and would prefer to hold that off until it becomes (in my estimation) essential for me.

Did I ever feel bullied to self-test? No. Did I feel it was pushed upon me when I was a newbie to the forum? No. Did anyone even say I was wrong to eschew it? No. What I did get were some extremely well put, highly persuasive arguments in its favor. I am really thankful for that advice even though for the time being, I don't find it appropriate for me.

If I took some medical advice from an Internet forum, applied it without medical advice, and came to some harm, I would feel as if I had only myself to blame. My doctor is the only valid gateway for my diabetes care. (I am not sure how I would have reacted if my diabetes care had been as cursory as it has been for many forum members. Although this is just a parenthetical remark, it does rate as a "scandal" as I have said before.)

Grateful said:

Forum: "a public meeting place for open discussion." (Websters).

Moving on just a moment from the diet stuff to another example. It is very common for T2Ds on this forum to suggest self-testing. IIRC it is also mentioned in daisy1's advice. I don't self-test, and would prefer to hold that off until it becomes (in my estimation) essential for me.

Did I ever feel bullied to self-test? No. Did I feel it was pushed upon me when I was a newbie to the forum? No. Did anyone even say I was wrong to eschew it? No. What I did get were some extremely well put, highly persuasive arguments in its favor. I am really thankful for that advice even though for the time being, I don't find it appropriate for me.

If I took some medical advice from an Internet forum, applied it without medical advice, and came to some harm, I would feel as if I had only myself to blame. My doctor is the only valid gateway for my diabetes care. (I am not sure how I would have reacted if my medical care had been as cursory as it has been for many forum members. Although this is just a parenthetical remark, it does rate as a "scandal" as I have said before.)

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BTW I still can't understand why you don't test.

It has become obvious to me that some members never read daisy1s script because of the type of questions they subsequently ask. As we all must have said at some point on this forum 'Everyone is different'. Some people want sound bites, others need more in depth knowledge. Basic info is what Daisy provides and I think that soon after dx this is the right way to go.

lucylocket61 said:

Its good to know of a good medical team. It gives me hope : )

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I was very lucky, hence my user name on this forum. It was not until I joined this forum that I found out how lucky I was. Being able to post my own experience, achieved with a treatment ordered by my doctor and validated by him over a period of more than nine months now, is something I feel compelled to share on a daily basis. It should not be necessary, but apparently it is helpful.

lucylocket61 said:

You raise an interesting question, I am not sure if there is an answer though. If one poster posts recommending removing all starchy carbs, and keeping under 50g of carbs a day right away. Then another poster posts saying that they eat some starchy carbs and have 120g of carbs a day and they are fine, doesnt that cause confusion? I think thats why i keep going on about daisy's post, its sort of middle of the road, safe and not confusing for someone just embarking on this long journey, looking for definites to cling to while they adjust and get familiar with their own responses and body.

any thoughts on this one?

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I dont think the difference in posts would necessarily cause confusion, the clammour of voices jumping in to support and repeat one approach is what I see as problematic and is something I sometimes see as more related to some peoples “ need to be heard” rather than the posters request / need for useful advice

woodywhippet61 said:

BTW I still can't understand why you don't test.

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I must still be in thrall to the white-coats. The doctor prescribed a low-carb diet, gave me regular positive feedback, and answered all of my questions. Self-testing never came up. He told me that the disease is now at non-diabetic levels. That's enough for me.

That of course did not stop me from participating in several threads here where important issues related to self-testing came up. To me the key one is: do daily fluctuations in BG matter, if your HbA1c tested every three months is low and stable? Of course some forum members came up with studies that showed, yes, these daily fluctuations are harmful.

I am on a very-low-carb diet and have eliminated almost all of the foods on the usual danger lists. Yes, I know that we are all different. I have already decided that I will start self-testing in at least two circumstances: (1) my A1c trend worsens appreciably over time, or (2) if I ever decided to muck around with a "moderate" carb diet instead of the current extreme one.

It is a calculated risk. We are all different in our attitude to risk.

Guzzler said:

It has become obvious to me that some members never read daisy1s script because of the type of questions they subsequently ask. As we all must have said at some point on this forum 'Everyone is different'. Some people want sound bites, others need more in depth knowledge. Basic info is what Daisy provides and I think that soon after dx this is the right way to go.

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Agree completely.. I get quite annoyed when the same old questions get asked time and time again because nobody reads anything any more. I use "nobody" as a proxy for some posters.

@lucylocket61 I can see a bit where you are coming from (unusually for me) but you seem to be trying to make your self-described 'opinion" be the only way the forum is allowed to operate. For me that wouldn't work as when I first started posting (seems almost a lifetime ago) I had already digested a huge amount of info from the forum and was after specifics. So although I can't remember my first posts I imagine they were quite specific so dietary advice was exactly what I was after. I'm awful at "support" so rarely comment on posts that seem to be looking for that sort of thing.
I hope I am not one of the people you seem to accuse of saying newbies must do something and I see you are fairly slow in producing evidence of this, I believe that is because it rarely if ever happens.
This forum has shown me that doctors are not always right (maybe even not very often) and has led me to educate myself on my condition and a few things on the side long may it help others in the same position.

I read their post, like this one and add my experience. If they label themselves as type2 and mention they're overweight, I advice low carb, as being overweight and just diagnoses type2 is the nhs's first concern in their longterm care. Of course in reducing their high bgs too.
I only have the nhs and this forum to keep me right too.
Both have served me extremely well since being told its insulin from now on.
I knew insulin doesn't do all the work and that I'd need more help than insulin and a dietician.
I assessed my needs.

But remember everyone is different. So I read their thread/post and rely on their label, they have chosen for themselves on joining.

Whereas I test at the moment even though My HbA1c is at non diabetic levels now.
I will discontinue testing when:
I no longer have retinopathy, neuropathy and my Kidneys are returned to full function.

I think I'm looking at testing for the long term.

ickihun said:

I read their post, like this one and add my experience. If they label themselves as type2 and mention they're overweight, I advice low carb, as being overweight and just diagnoses type2 is the nhs's first concern in their longterm care. Of course in reducing their high bgs too.
I only have the nhs and this forum to keep me right too.
Both have served me extremely well since being told its insulin from now on.
I knew insulin doesn't do all the work and that I'd need more help than insulin and a dietician.
I assessed my needs.

But remember everyone is different. So I read their thread/post and rely on their label, they have chosen for themselves on joining.

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I do wish that a required field be put into the aplication on joining that prospective members should input type and medication which would then be part of their signature but I admit that medical information is a personal privacy choice and I, myself, was wary of putting it into a form for an as then unknown forum. It would make the whole question of advice easier but I completely understand why there are few required fields.

JohnEGreen said:

Whereas I test at the moment even though My HbA1c is at non diabetic levels now.
I will discontinue testing when:
I no longer have retinopathy, neuropathy and my Kidneys are returned to full function.

I think I'm looking at testing for the long term.

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Your post is a perfect example of why I like this forum. We have to tell it like it is.

Guzzler said:

I do wish that a required field be put into the aplication on joining that prospective members should input type and medication which would then be part of their signature but I admit that medical information is a personal privacy choice and I, myself, was wary of putting it into a form for an as then unknown forum. It would make the whole question of advice easier but I completely understand why there are few required fields.

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A couple of days ago I remember wondering whether new members could be presented with a sort of "decision tree" where they could supply (or not) that sort of information, and be given initial hints. Then I realized this really is "giving medical advice."

It is frustrating though how relatively similar the initial posts are, at least for the majority of T2Ds. I say frustrating because our answers (inasmuch as they relate to the medical side rather than the emotional side) tend to be so similar when trying to help one of these "mainstream T2Ds" at diagnosis. (Edited to add: A lot of duplication of labor, basically!)

I also agree that many do not seem to read daisy1's advice, or read it only partially, otherwise we would not get the questions that we do. We even get people who come along, ask questions, then disappear for a while and come back a few weeks later with the same questions.

Sometimes I think it has something to do with the amount of text that can be displayed on a single smartphone screen....

I am just putting a message on this topic to apologise to @lucylocket61 for derailing this thread a few pages ago.
I shall be more mindful going forward.

all the best !!

Grateful said:

A couple of days ago I remember wondering whether new members could be presented with a sort of "decision tree" where they could supply (or not) that sort of information, and be given initial hints. Then I realized this really is "giving medical advice."

It is frustrating though how relatively similar the initial posts are, at least for the majority of T2Ds. I say frustrating because our answers (inasmuch as they relate to the medical side rather than the emotional side) tend to be so similar when trying to help one of these "mainstream T2Ds" at diagnosis. (Edited to add: A lot of duplication of labor, basically!)

I also agree that many do not seem to read daisy1's advice, or read it only partially, otherwise we would not get the questions that we do. We even get people who come along, ask questions, then disappear for a while and come back a few weeks later with the same questions.

Sometimes I think it has something to do with the amount of text that can be displayed on a single smartphone screen....

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Some people just do not enjoy reading, on whatever medium it is presented to them. I do not mean this as a criticism but only as an observation.

Guzzler said:

Some people just do not enjoy reading, on whatever medium it is presented to them. I do not mean this as a criticism but only as an observation.

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... but they come to a place where almost everything is related using the written word!!! (with some exceptions including the excellent video links that you provide).

It's not just a question of reading. Most of the information we are giving in answer to questions is available from the main page of this website, or other websites, presented much better than I ever could. Some people "learn" best when interacting with other people, rather than reading a prepared fact sheet. Some people "don't recognize themselves" in the fact sheet and understandably feel the need to seek out others who are going through something like themselves.

Grateful said:

... but they come to a place where almost everything is related using the written word!!! (with some exceptions including the excellent video links that you provide).

It's not just a question of reading. Most of the information we are giving in answer to questions is available from the main page of this website, or other websites, presented much better than I ever could. Some people "learn" best when interacting with other people, rather than reading a prepared fact sheet. Some people "don't recognize themselves" in the fact sheet and understandably feel the need to seek out others who are going through something like themselves.

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Agreed, hence the 'One size does not fit all' phrase oft quoted here.

This is the Basic Information which has been mentioned earlier so that everyone can see it if they haven't been able to already.


BASIC INFORMATION FOR NEW MEMBERS

Diabetes is the general term to describe people who have blood that is sweeter than normal. A number of different types of diabetes exist.

A diagnosis of diabetes tends to be a big shock for most of us. It’s far from the end of the world though and on this forum you'll find well over 276,000 people who are demonstrating this.

On the forum we have found that with the number of new people being diagnosed with diabetes each day, sometimes the NHS is not being able to give all the advice it would perhaps like to deliver - particularly with regards to people with type 2 diabetes.

The role of carbohydrate

Carbohydrates are a factor in diabetes because they ultimately break down into sugar (glucose) within our blood. We then need enough insulin to either convert the blood sugar into energy for our body, or to store the blood sugar as body fat.

If the amount of carbohydrate we take in is more than our body’s own (or injected) insulin can cope with, then our blood sugar will rise.

The bad news

Research indicates that raised blood sugar levels over a period of years can lead to organ damage, commonly referred to as diabetic complications.

The good news

People on the forum here have shown that there is plenty of opportunity to keep blood sugar levels from going too high. It’s a daily task but it’s within our reach and it’s well worth the effort.

Controlling your carbs

The info below is primarily aimed at people with type 2 diabetes, however, it may also be of benefit for other types of diabetes as well.

There are two approaches to controlling your carbs:

• Reduce your carbohydrate intake
• Choose ‘better’ carbohydrates

Reduce your carbohydrates

A large number of people on this forum have chosen to reduce the amount of carbohydrates they eat as they have found this to be an effective way of improving (lowering) their blood sugar levels.

The carbohydrates which tend to have the most pronounced effect on blood sugar levels tend to be starchy carbohydrates such as rice, pasta, bread, potatoes and similar root vegetables, flour based products (pastry, cakes, biscuits, battered food etc) and certain fruits.

Choosing better carbohydrates

The low glycaemic index diet is often favoured by healthcare professionals but some people with diabetes find that low GI does not help their blood sugar enough and may wish to cut out these foods altogether.

Read more on carbohydrates and diabetes.

Over 145,000 people have taken part in the Low Carb Program - a 10 week structured education course that is helping people lose weight and reduce medication dependency by explaining the science behind carbs, insulin and GI.

Eating what works for you

Different people respond differently to different types of food. What works for one person may not work so well for another. The best way to see which foods are working for you is to test your blood sugar with a glucose meter.

To be able to see what effect a particular type of food or meal has on your blood sugar is to do a test before the meal and then test after the meal. A test 2 hours after the meal gives a good idea of how your body has reacted to the meal.

The blood sugar ranges recommended by NICE are as follows:

Blood glucose ranges for type 2 diabetes

• Before meals: 4 to 7 mmol/l
• 2 hours after meals: under 8.5 mmol/l

Blood glucose ranges for type 1 diabetes (adults)

• Before meals: 4 to 7 mmol/l
• 2 hours after meals: under 9 mmol/l

Blood glucose ranges for type 1 diabetes (children)

• Before meals: 4 to 8 mmol/l
• 2 hours after meals: under 10 mmol/l

However, those that are able to, may wish to keep blood sugar levels below the NICE after meal targets.

Access to blood glucose test strips

The NICE guidelines suggest that people newly diagnosed with type 2 diabetes should be offered:

• structured education to every person and/or their carer at and around the time of diagnosis, with annual reinforcement and review
• self-monitoring of plasma glucose to a person newly diagnosed with type 2 diabetes only as an integral part of his or her self-management education

Therefore both structured education and self-monitoring of blood glucose should be offered to people with type 2 diabetes. Read more on getting access to blood glucose testing supplies.

You may also be interested to read questions to ask at a diabetic clinic.

Note: This post has been edited from Sue/Ken's post to include up to date information.

Take part in Diabetes.co.uk digital education programs and improve your understanding.

• Low Carb Program - it's made front-page news of the New Scientist and The Times. Developed with 20,000 people with type 2 diabetes; 96% of people who take part recommend it... find out why
• Hypo Program - improve your understanding of hypos. There's a version for people with diabetes, parents/guardians of children with type 1, children with type 1 diabetes, teachers and HCPs.