Type 2 Is this normal for the NHS?

[Alamode]

Hi All

I was diagnosed T2 on the 13th October had a second blood test to confirm on the 20th October then on the 31st had a telephone appointment with doctor who said yes I was diabetic and had been referred for feet and eyes check

Then nothing no contact until the 5th of December when I had a 30 second foot check from someone who checked the pulse in my ankles and said I was fine and my numb toes are not from diabetes

My original HbA1c test was 62 and on second test one week later was 61

I bought a meter and out of 220 readings since the 20th October (before and after meals) my average BG is 5.9 it was a bit lower but have had flu for a week which pushed my readings up, I don't even know whether that is good or bad my highest readings tend to be the one I take before breakfast

The only things I know about T2 is what I have read on the internet so I have made up my own way of treating myself mostly LCHF, I have lost 2 stone from 18.5 down to 16.5 and I feel good for it. I don't do any exercise due to a back problem which I know isn't good

Is it normal to have no contact after diagnosis? I originally told the doctor that I wanted to control the diabetes with food not drugs which he didn't like so that maybe part of it but I feel abandoned by the NHS I thought I would get to speak to someone on how to control the diabetes but have heard nothing, no eye test either

Is this all normal? Am I just expecting to much too soon?

Richard

Fat Fifty and Finally sorting my health out

 

[Jo_the_boat]

Some get good treatment, some awful, some a mixture. It seems to depend partly on where you are and who your doctor / diabetic nurse is. Did you see a specialist diabetic nurse?
HbA1c was quite high I think but your personal readings since seem to indicate you're doing a good job on your LCHF. The only way to tell really is a follow-up HbA1c, normally at about the 3-month stage. (which, by the sound of it you'll have to march in to the docs and demand!)
High reading before breakfast may well be Dawn Phenomenon (liver dump) where the liver dumps glucose stored in our livers back into our blood streams during overnight 'fasting'. Plenty on here about that, have a search.
I told my nurse that I wanted to try and sort things out with diet but met a bit of a stone wall to be honest. She kept spouting the 'party line' - basically the healthy plate option, which is much too carby for what you and I are trying to do - which, as you've seen here, has been very beneficial to many on here (but not all).
If it was me I'd get back in touch with the docs and ask for an eye test, for retinpoathy - also see if there is a nurse you can consult with (though they too might not favour your LCHF approach). You can also go to an opticians to have your eyes checked out. If there's anything amiss they should pick up on that.
Have to say though, well done with your efforts.
Somebody with more experience than me may be along soon to offer more (better?) advice.
One thing, you must realize we on here are not medics (with the odd exception).

There's a thread currently running that shows how hit and miss it all is.......
http://www.diabetes.co.uk/forum/threads/who-is-supposed-to-be-my-diabetic-nurse.131160/

 

[Guzzler]

Hello and welcome. Good work on your efforts to lower your glucose levels. I will tag @daisy1 for the welcome pack.

I agree with Jo, you should contact your GP with a view to having a review of your progress so far, a three monthly review for those newly diagnosed seems to be standard, after that it is down to how well/poorly you are doing.

 

[Rachox]

Hi Alamode, welcome to the Forum!
Your treatment is similar to loads who post here unfortunately. My treatment was better but lacked dietary advice, however I have since discovered that my GP does agree with low carb diets!
I was diagnosed in May with an HbA1c of 70 and managed with reducing carbs to get down to a ‘normal’ level of 36 by September. All from help here, along with Metformin and self monitoring. At the last count my HbA1c was 33 and I have lost 4 and a half stone!
You sound like your well on the way to cracking this!
Ps. I love the Fat Fifty and Finally sorting my life out mantra! It so rings true with me!

 

[daisy1]

@Alamode

Hello Richard and welcome to the Forum Here is the Basic Information we give to new members and I hope you will find it both interesting and useful. Ask as many questions as you want and someone will help.


BASIC INFORMATION FOR NEWLY DIAGNOSED DIABETICS

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 250,000 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. Most of these are free.

• 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.

 

[Daibell]

The simple answer is Yes for many like me and yourself which is why this forum is so useful. Make sure you have another (or 1st?) HBA1C blood test in 3 months time and organise it yourself with surgery reception. Make a (double) appointment for around 2 weeks after the test to have a diabetes review when you can discuss anything and check you have been registered as a diabetic (my GP forgot) and registered for a retinopathy which can take up to a year.

 

[Dark Horse]

Hi All

I was diagnosed T2 on the 13th October had a second blood test to confirm on the 20th October then on the 31st had a telephone appointment with doctor who said yes I was diabetic and had been referred for feet and eyes check

Then nothing no contact until the 5th of December when I had a 30 second foot check from someone who checked the pulse in my ankles and said I was fine and my numb toes are not from diabetes

My original HbA1c test was 62 and on second test one week later was 61

I bought a meter and out of 220 readings since the 20th October (before and after meals) my average BG is 5.9 it was a bit lower but have had flu for a week which pushed my readings up, I don't even know whether that is good or bad my highest readings tend to be the one I take before breakfast

The only things I know about T2 is what I have read on the internet so I have made up my own way of treating myself mostly LCHF, I have lost 2 stone from 18.5 down to 16.5 and I feel good for it. I don't do any exercise due to a back problem which I know isn't good

Is it normal to have no contact after diagnosis? I originally told the doctor that I wanted to control the diabetes with food not drugs which he didn't like so that maybe part of it but I feel abandoned by the NHS I thought I would get to speak to someone on how to control the diabetes but have heard nothing, no eye test either

Is this all normal? Am I just expecting to much too soon?

Richard

Fat Fifty and Finally sorting my health out

Your first diabetic eye screening for retinopathy should be within 3 months (89 days) of referral to the screening programme. If you haven't been sent an appointment in the next couple of weeks, check with your GP that they have actually referred you to the screening service. GPs are expected to make the referral as soon as you are diagnosed so you would expect to have an appointment very soon.

See standard DES-PS-2 here:- https://www.gov.uk/government/uploa...ds_and_Performance_Objectives_August_2017.pdf

 

[Alamode]

Thank you for your kind replies

To answer a few of the questions:

I haven't seen anyone about diabetes, the practice doesn't have a diabetic nurse.

The doctor did say he was going to refer me for an eye check but haven't heard anything yet, I will chase this up in the new year

On the 13th of January it will be 3 months since diagnosis so I will ask if they can do a Hba1c hopefully it has come down a lot which should help justify my refusal to the medicine.

I was also diagnosed with high cholesterol 8.9 I think so I am a bit concerned that the LCHF way of eating my make that worse

 

[covknit]

Thank you for your kind replies

To answer a few of the questions:

I haven't seen anyone about diabetes, the practice doesn't have a diabetic nurse.

The doctor did say he was going to refer me for an eye check but haven't heard anything yet, I will chase this up in the new year

On the 13th of January it will be 3 months since diagnosis so I will ask if they can do a Hba1c hopefully it has come down a lot which should help justify my refusal to the medicine.

I was also diagnosed with high cholesterol 8.9 I think so I am a bit concerned that the LCHF way of eating my make that worse

LCHF increased my cholesterol and at 8.9 I would expect a referral to the lipids clinic to be told I need to lose weight and to get a referral to the dietician. Have you been offered a place on a course such as Desmond? They are useful for background information and to answer your questions. I have a couple of friends from the people I met there and find it very helpful to compare and contrast our experiences

 

[Alamode]

LCHF increased my cholesterol and at 8.9 I would expect a referral to the lipids clinic to be told I need to lose weight and to get a referral to the dietician. Have you been offered a place on a course such as Desmond? They are useful for background information and to answer your questions. I have a couple of friends from the people I met there and find it very helpful to compare and contrast our experiences

lol I have been offered nothing, when the doctor told me, I said 'what now' he said you need to take statins and when I said no isn't there anything else I can do, I never heard from him again

 

[Resurgam]

I have not seen my doctor since diagnosis over a year ago.
I saw another doctor who tried to get me back on statins, despite my having a really miserable few weeks taking Metformin and Atorvastatin. No mention of that in my notes.
Cholesterol tends to increase when there is weightloss - I have lost over 40 lb so I expect that if I was tested I would be told it was high and the statins would be suggested again.
I am not due to have further tests until some time next year.

 

[Guzzler]

LCHF increased my cholesterol and at 8.9 I would expect a referral to the lipids clinic to be told I need to lose weight and to get a referral to the dietician. Have you been offered a place on a course such as Desmond? They are useful for background information and to answer your questions. I have a couple of friends from the people I met there and find it very helpful to compare and contrast our experiences

My cholesterol is similar to the OPs and yet I have never had a weight problem other than I slipped into the underweight category for a few weeks when I had been doing LCHF for about eight weeks. My weight is now stable and in the healthy range. Would you advise me to ask about attending a lipid clinic and getting a referral to a dietician who would most likely have the same approach as the DESMOND course leaders, that which promotes carbs as an 'essential' macro?
Weight gain, weight loss both affect cholesterol levels and as a last thought, you may like to read Malcolm Kendrick's book on the subject of the cholesterol con [sic] or you can catch a short video of his whereby he explains how the committee on cholesterol levels came to decide what the guideline numbers should be for people.

 

[Dark Horse]

Thank you for your kind replies

To answer a few of the questions:

I haven't seen anyone about diabetes, the practice doesn't have a diabetic nurse.

The doctor did say he was going to refer me for an eye check but haven't heard anything yet, I will chase this up in the new year

On the 13th of January it will be 3 months since diagnosis so I will ask if they can do a Hba1c hopefully it has come down a lot which should help justify my refusal to the medicine.

I was also diagnosed with high cholesterol 8.9 I think so I am a bit concerned that the LCHF way of eating my make that worse

I think you're right to keep an eye on your cholesterol - levels above 7.5 mmol/l should make your GP consider whether you have familial hypercholesterolaemia https://cks.nice.org.uk/hypercholesterolaemia-familial#!diagnosissub

Losing weight is very useful, so well done on making that step. There is a lot of useful information on this site:- https://heartuk.org.uk/cholesterol-and-diet/healthy-eating

Any form of exercise is good, it would be worth finding something that you can do that won't exacerbate your back problem. Walking, cycling, swimming are all good but even something like using hand grip exercisers is better than nothing.

 

[covknit]

lol I have been offered nothing, when the doctor told me, I said 'what now' he said you need to take statins and when I said no isn't there anything else I can do, I never heard from him again

Ok. Some areas are better than others, sometimes there are other issues and sometimes people fall out of even the best planned care regime and that is without even considering the implications of the financing of your NHS trust and any studies they may be involved with. You need to discuss your individual case with a qualified professional.

If you are not already; sign up to be an online patient. I can read all my diabetic test results through the EMIS portal. The receptionists should be able to give you the information to enable you to set up an account.

Ask the receptionist when your follow up with the diabetes nurse will be and who you should contact to get signed up for a diabetes awareness course. The receptionists at my parents practice can look up this stuff in a couple of minutes My surgery goes into meltdown and is totally unable too. They then go into fob off and insist the follow up is in 12 months. That is too long - aim for a 3 monthly.

If the receptionists cannot assure you that the appropriate referrals have been made for you make an appointment to see the diabetes nurse. If there is no DN you need an appointment with the GP to ask about monitoring your lipids, diabetes, getting on a course (the courses vary according to location and the type of diabetes).

This is the link to NHS retinopathy https://www.nhs.uk/conditions/diabetic-retinopathy/ go through the sections of the NHS site that are causing you concern and, if you can, any test results out of the normal range on your on line patient record. Make a list of your questions. Ensure you ascertain the points at which your gp will refer you for an eye test and the lipids clinic.

For power to your elbow:- My diabetes and retinopathy follow up was 6 months - see my details in the signature and The lipids clinic have given my sister (chol 8) a diet and exercise plan with follows ups including the dietician.

I have created a spreadsheet recording relevant test results that I take to every medical event I have. My care professionals find it useful and it is a handy way of monitoring progress.

 

[BrianTheElder]

My complaints are ones of omission.

• I was not told that a high dose of statins could lead to T2D.
• I was not told that the B12 deficiency I was suffering from could be caused by Metformin.
• When I complained of numbness and pins and needles in my feet, it was just ignored, not connected with T2D.
• I got no advice about diet at all.
• I was just told to take the pills and basically go away.

Fortunately I have found all about these things by myself, with help from this forum.

 

[dbr10]

Hi All

I was diagnosed T2 on the 13th October had a second blood test to confirm on the 20th October then on the 31st had a telephone appointment with doctor who said yes I was diabetic and had been referred for feet and eyes check

Then nothing no contact until the 5th of December when I had a 30 second foot check from someone who checked the pulse in my ankles and said I was fine and my numb toes are not from diabetes

My original HbA1c test was 62 and on second test one week later was 61

I bought a meter and out of 220 readings since the 20th October (before and after meals) my average BG is 5.9 it was a bit lower but have had flu for a week which pushed my readings up, I don't even know whether that is good or bad my highest readings tend to be the one I take before breakfast

The only things I know about T2 is what I have read on the internet so I have made up my own way of treating myself mostly LCHF, I have lost 2 stone from 18.5 down to 16.5 and I feel good for it. I don't do any exercise due to a back problem which I know isn't good

Is it normal to have no contact after diagnosis? I originally told the doctor that I wanted to control the diabetes with food not drugs which he didn't like so that maybe part of it but I feel abandoned by the NHS I thought I would get to speak to someone on how to control the diabetes but have heard nothing, no eye test either

Is this all normal? Am I just expecting to much too soon?

Richard

Fat Fifty and Finally sorting my health out

Some of us just get "Take these pills and come back in three months". Not exactly comprehensive care.

 

[dbr10]

Thank you for your kind replies

To answer a few of the questions:

I haven't seen anyone about diabetes, the practice doesn't have a diabetic nurse.

The doctor did say he was going to refer me for an eye check but haven't heard anything yet, I will chase this up in the new year

On the 13th of January it will be 3 months since diagnosis so I will ask if they can do a Hba1c hopefully it has come down a lot which should help justify my refusal to the medicine.

I was also diagnosed with high cholesterol 8.9 I think so I am a bit concerned that the LCHF way of eating my make that worse

You may find that TC rises on a LCHF diet. This may, in part, be to HDL improving. Mine went up to 10.1 and I was referred to a lipid specialist who made no enquiries about diet and suggested doubling my stating and including Ezetrol. The TC fell fairly dramatically and is now 3.5. What I don't know is whether the big increase was just a blip and would have fallen anyway as I adjusted to the new diet. I was losing weight at the time. The only way to tell would be to reduce the statin for a period of, say, three months and see if TC got much worse. The specialist did say that increasing the statin would not normally have given rise to such a big reduction; so I'm left wondering.

 

[dbr10]

My complaints are ones of omission.

• I was not told that a high dose of statins could lead to T2D.
• I was not told that the B12 deficiency I was suffering from could be caused by Metformin.
• When I complained of numbness and pins and needles in my feet, it was just ignored, not connected with T2D.
• I got no advice about diet at all.
• I was just told to take the pills and basically go away.

Fortunately I have found all about these things by myself, with help from this forum.

'Care' can be very poor. The Forum has been a big help.