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Feeling abandoned

Discussion in 'Newly Diagnosed' started by LindaA 2, Sep 21, 2018.

  1. LindaA 2

    LindaA 2 Type 2 · Member

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    I was diagnosed with T2 diabetes six months ago. In the first two months I was injecting myself with insulin and as a result there was a lot of hospital appointments with the local diabetes clinic. I’ve had one meeting with a dietitian too. In May I was started on 4 x 500 Metformin daily and been left to my own devices since. Basically I feel I’ve been told I have a complicated, serious illness and to just get on with it! It’s through this website and others like it I’ve worked out that carbs cause increased blood sugars, what carbs are and how to modify my diet. Does anyone else feel let down by their local health board, diabetes team and doctor? Sorry for the rant but it’s all so overwhelming at times
     
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  2. Squire Fulwood

    Squire Fulwood Type 2 · Expert

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    Lots of people say that the performance of the HCP's could improve. There are some stories of brusque DN's and others who toe the party line in spite of all knowledge to the contrary. Things are slowly improving in that there are more and more reports of DN's offering low carb advice.

    As to having a complicated, serious illness and just to get on with it. It's one of the realisations that there isn't an alternative I'm afraid. You will come to accept that in time. Sorry I cannot offer comfort on that point.
     
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  3. kitedoc

    kitedoc Type 1 · Well-Known Member

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    Hi @LindaA 2, Welcome to this site and congratulations for joining and asking questions.
    With your diabetes condition do you feel like you have been treated like a machine, programmed to "Set and Forget"?
    I assume that you have been taught how to use a glucose meter, interpret the results and have a communication line to the DSN regarding results and changes in treatment?
    What about carbs counting and insulin doses? And did they ask you to monitor your weight?
    And what to do with your insulin/diabetes for sick days ?
    How often do they order your blood test (HBA1c - usually a three monthly test which gives an average of how your BSL has been over the previous 3 months). Or is your GP supposed to see you and order these tests.and check your blood pressure etc.?
    Please let us know what you need to best take care of yourself, ask what questions to ask of your health team and offer you support so that you are not being ignored, if that is what is happening. There is lots of information available on site, and others with perhaps similar experiences and possible remedies.
    Of course none of us can give direct professional advice or opinion. However we are with you and ready to help and share..
     
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  4. LindaA 2

    LindaA 2 Type 2 · Member

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    Hi kitedoc

    Yes definitely feel I’ve been programmed to set and forget lol. Haven’t really been told/shown how to interpret my blood reading I’m simply assuming higher numbers aren’t so good and the lower the better. There is a helpline number but anytime I’ve phoned it’s gone to voicemail.

    Since March I’ve had 1 HBA1c blood test and I’m assuming that there will be another test when I see the consultant at the end of November. Do you think I should see my doctor before then?

    Thanks for your advice
     
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  5. Emma_369

    Emma_369 Type 2 (in remission!) · Well-Known Member

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    I felt exactly the same. I got told of my diagnosis with ‘you do know you’re diabetic don’t you!’ Well no of course I didn’t. Within 2 minutes it was here’s a 3 month supply of metformin, take these and halve whatever you’re eating. Don’t care if you eat once or 6 times a day, just halve the size of your meals. Come back in 3 months.
    I will be forever grateful for this forum and the kindness and willingness Of it’s members to share experiences, ideas etc because without it I’m sure I’d be back at the docs in 3 months with no improvement if I’d stuck to his limited advice.
    Keep posting on here - rant away, ask questions. It’s certainly helped me feel that there’s a network of people there for support :)
     
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  6. Smallbrit

    Smallbrit Type 2 · Well-Known Member

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    As you're new I'm tagging @daisy1 to provide her welcome info, that you may have seen already if you've looked around this site, which also has info on numbers (I think if I'm remembering correctly). Quite a lot of people, me included, seem to have received the 'just get on with it' or 'eat more healthily' sort of info so I'm glad you're looking into it independently. I'm not on medication, so am not the best person to advise on those concerns but hopefully someone more knowledgeable than me will jump in!
     
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  7. Tickledpinknot

    Tickledpinknot Other · Member

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    I’m sorry you feel abandoned, it’s not great, I know.
    I’m newly diagnosed with steroid induced diabetes and in such a small percentage of the diabetic and cancer community I’ve now come to realise I’m often more knowledgable than the medics!
    Do whatever you can to be control of your health and don’t be afraid to ask for what you need.
    I record BG levels but also note other meds which may have an adverse effect and I’ve tried adjusting my cancer meds to not completely mess with my diabetes.
    There were a few months when I felt bereft and basically quite peed off. It’s a normal response, almost a grieving process.
    Don’t be too hard on yourself, just work out what you need and ask for it. Best wishes xx
     
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  8. Daibell

    Daibell LADA · Master

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    Hi and welcome. Many of us did not get the support we needed along the way. Fortunately I now have a good DN at the surgery and this forum has been avital source of information. The low-carb diet is usually key to reducing BS even when on insulin. If you have excess weight then the LC diet is almost essential in getting the weight and BS down but keep an eye BS with the meter as the insulin may need to be reduced as weight goes down. If your weight is in the right range then just keep control of the carbs and have enough fat and protein to keep you feeling full. I hope the dietician didn't give you the older NHS mantra of avoiding fat and having starchy carbs? If so then follow the diet advice on this forum. If you need more guidance on using your insulin then do ask on the T1 forum.
     
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  9. LindaA 2

    LindaA 2 Type 2 · Member

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    Thanks Daibell. It’s thanks to this page I’ve learned about a low carb diet and healthy eating. Since March I’ve managed to drop a dress size, which I’m delighted about
     
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  10. Guzzler

    Guzzler Type 2 · Master

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    Hello and welcome. In short, at diagnosis I was threatened with insulin, told to switch to wholemeal foods and to lose 7lbs.

    All that I have learned about Diabetes, nutrition and medications has come directly from the good members here on DCUK.

    I have celebrated here because here is where I got the support and encouragement. Since I improved my A1c my HCPs are not interested - if they ever were. I must add that there are some stupendous medics out there who work tirelessly, often in their own time, to help people like you and me. I take my hat off to them but wish that one of them could move in next door to me.

    You have not been abandoned by everyone! We T2s are everywhere!
     
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  11. LindaA 2

    LindaA 2 Type 2 · Member

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  12. Resurgam

    Resurgam Type 2 (in remission!) · Expert

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    It is all too common - I went to the clinic to be told that I was a 'very bad' diabetic - the doctor called ten days earlier to make the appointment but said it was nothing serious, just routine - on the phone. I have not seem him since.
    The 'education course' was a farce - all the wrong advice about foods.
    Luckily I already knew that carbs were not good for me.
    Followups have been to try to get me to take statins or to tell me my test results are fine and to try to persuade me to take statins. Prising out the actual numbers for the tests took several requests as the nurse was on a script about cholesterol being higher than we like to see in diabetics. When I got the results I just said 'oh not diabetic levels then.' and she managed to choke out 'well not really' before I left.
     
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  13. Blip22

    Blip22 Type 2 · Well-Known Member

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  14. Blip22

    Blip22 Type 2 · Well-Known Member

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    Well done for looking into your condition and trying to understand it. And yes minimising highly processed carbohydrate will help a lot. Good luck x
     
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  15. LindaA 2

    LindaA 2 Type 2 · Member

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    It’s not great support out there really Resurgam. Thank goodness for sites like this
     
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  16. kitedoc

    kitedoc Type 1 · Well-Known Member

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    Hi @LindaA 2, If I was noticing high BSLs say 2 hours after meals, or high BSLs before breakfast or the occurrence of hypos at one or more particular times or feel unwell and wondered whether any prescribed tablets were the cause I would collect/write down the results and, if I could not work out or were uncertain or fearful of experimenting with insulin doses etc I would be off to the doctor. Once I had more confidence to work through things and know how best to proceed I could handle most things myself. That is what I have done in the past. I cannot advise directly but the above are some reasons why we diabetics see your health team. And since, as you say, the Help Line is not useful, seeing your doctor sound like one of the best options.
    On the Home page of this site is a helpful section about type 2 diabetes (and because you are prescribed insulin, some of the Type 1 section might be helpful also.) The range of normal blood sugars for Type 1 and Type 2 are also listed.
    Best of luck and please keep asking questions !!
     
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  17. daisy1

    daisy1 Type 2 · Legend

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    @LindaA 2

    Hello Linda and welcome to the Forum :) Here is the Basic Information we give to new members and I hope you will find it helpful. Ask as many questions as you like and someone will be able to answer.

    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 235,000 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.
     
  18. LindaA 2

    LindaA 2 Type 2 · Member

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    Thank you so much Daisy1. I’ll look into all the links recommend in your post
     
  19. rhubarb73

    rhubarb73 Type 2 · Well-Known Member

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    Hello. I rated your original post "winner". I sympathise and empathise with your feelings about the NHS, but you are in control now...and it sounds like you are making really good progress. Are you self monitoring blood glucose - definitely worth considering, as it gives you lots of information. Cost can be an issue but why not make an appointment with your GP, go in and say "I'm managing my T2, this is how I'm doing it, I'm making progress and I need your help".
    If enough of us patients tell our doctors that we are not happy with the NHS approach to this, maybe more of them will start to change. If you don't quite have the confidence to say it out loud then maybe write it in a letter.
    Well done.
     
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  20. LindaA 2

    LindaA 2 Type 2 · Member

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    Thank you rhubarb73. It’s great to get advice from others who have been through the same things. Up till now I feel I’ve been doing this on my own. So grateful for this site
     
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