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Expectations

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
Inka said:
@Nanny Never take “fine” for an answer! Get the actual numbers for your blood test. The diabetes one will probably be the HbA1C test. Ask what result you got. If they say Fine, persist and tell them you want the actual number. Some receptionists seem to guard your health information like it’s nothing to do with you - it is.

Once you’ve got your HbA1C results (ask for the previous ones too) then you’ll be better informed as to how you’re getting on. If you come back to us and tell us, you’ll get good suggestions.

You ask if you should be testing your own blood sugar at home. That’s up to you, but if I was Type 2 (I’m Type 1) I would. It will provide you with very useful information about whether your diet is working for you. That will then allow you to improve your HbA1C.

Don’t worry about apps and stuff for now. Pick up the phone, have a pen and paper ready, and get your HbA1C results.
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I did ask. They said that's all I have. I have never, ever been told a single number - I suppose that's why I'm so frustrated. I expected more - maybe it sounds like I'm right...
 
To add insult to injury - my cold is not a cold!!! It's blinking Covid - so self isolation starts - for me, husband and 11 year old. Teenager is Covid free - he's vaccinated and our link to the outside world!
 
Nanny said:
To add insult to injury - my cold is not a cold!!! It's blinking Covid - so self isolation starts - for me, husband and 11 year old. Teenager is Covid free - he's vaccinated and our link to the outside world!
Click to expand...

Wishing you a swift recovery @Nanny Rest lots and I hope you feel better soon.
 
Nanny said:
Hi. I'm newish... I was diagnosed back in June with Type 2. Some metaformin woes - now I am on slow release.

But....
I am baffled by the care and my expectations. I have seen the doctor once - to get my diagnosis. (Another menopausal ailment meant they took my blood). That was in June - I saw a nurse for bloods again in August. I got the result "fine" from calling the reception.

Am I expecting too much? I have no idea what my blood sugar is / was / should be. If I should be measuring anything. I "internet"ted everything I know. I would have thought I would have had some dietary advice - something .. but it's just been, you have diabetes, it's really serious, lose your feet, off you go, goodbye.

I don't have a relationship with my doctor - before June the last time I saw one was 11 years ago - when I had a baby.

Is this standard or am I a fuss pot.
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Yes you are expecting too much. The NHS is generally poor at handling new T2s. Its a well known saying that the 2 in Type 2 Diabetes stands for 2nd Class Citizen, usually denied the tools and information to do the job effectively.
 
@Nanny - you have been pointed to the learning zone (orange tab at the top of every page) and it's well worth looking there. The main thing you haven't been told is that diet plays a huge part in controlling T2 and allied with that the ability to know how foods impinge on your blood sugars. In order to know that you need a meter. A fairly cheap one can be obtained from Spirit Healthcare for £12.99 and the test strips from the same manufacturer are £9.99 for 50. If you test before your meal and at 2 hours afterwards then it enables you to choose foods which don't impinge too badly on your blood glucose,

Generally speaking all carbohydrates raise BG. That is anything made with flour, so bread, pasta etc and any baked goods, rice, potatoes etc. If you do one good thing for yourself it is to get that meter and use it!
 
Pattidevans said:
@Nanny - you have been pointed to the learning zone (orange tab at the top of every page) and it's well worth looking there. The main thing you haven't been told is that diet plays a huge part in controlling T2 and allied with that the ability to know how foods impinge on your blood sugars. In order to know that you need a meter. A fairly cheap one can be obtained from Spirit Healthcare for £12.99 and the test strips from the same manufacturer are £9.99 for 50. If you test before your meal and at 2 hours afterwards then it enables you to choose foods which don't impinge too badly on your blood glucose,

Generally speaking all carbohydrates raise BG. That is anything made with flour, so bread, pasta etc and any baked goods, rice, potatoes etc. If you do one good thing for yourself it is to get that meter and use it!
Click to expand...
The general info stuff I get. The learning zone stuff was fine - a bit slow but fine. Since diagnosis, I changed my diet big time - it wasn't bad to start. I have stopped eating any carb only food - no potatoes, pasta, rice, bread - no sugar at all. I have no gall bladder - removed 16 years ago so I can't eat much fat. No butter or oils or fruit for some reason. So it's lean meat and veggies only. Its boring and sad but doable.

I have lost just shy of 2 stone but need to stop losing weight as I'm in the healthy range. I have no idea how to maintain this diet and live with it.

I've changed lots of things on the physical stuff. But I haven't spoken to anyone since the diagnosis so I don't know if I've helped. I think tbh I'm struggling psychologically, I have lots physically happening to me - menopause and diabetes and waterworks problems all in the same big pot. It's all just alot. Hoped I would get even an iota of support - even just dealing with the physical stuff. But hate looking things up on the internet - just makes you so fearful and ashamed.

A meter might not help - might just feed into my obsessions - I need to be able to live with this - not on this state of panic.
 
Hi there

There is absolutely no reason to feel ashamed. It's NOT your fault you have T2, whatever the gutter press says!
Nanny said:
A meter might not help - might just feed into my obsessions - I need to be able to live with this - not on this state of panic.
Click to expand...
Well, it is obviously up to you, but knowledge is power, especially in Diabetes. If you test before each meal and at 2 hours after you will see what any particular food has done to your levels, which will enable you to cut it out, or just reduce the portion size until it's at a level where you can handle it, and which food you can eat freely.

I note you say that you had your gallbladder removed 16 years ago and therefore cannot eat fat. Is this something you have discovered for yourself because you get indigestion/other side effects? Or just something you've been told? I ask because I had mine out in 1985 and it hasn't stopped me eating anything at all. I love butter and good fats. I'm not saying that will apply to everyone by any means. Since having mine out I got rid of many of the nasty indigestion symptoms. As we always say on here, we are all different 🙂
 
Pattidevans said:
Hi there

There is absolutely no reason to feel ashamed. It's NOT your fault you have T2, whatever the gutter press says!

Well, it is obviously up to you, but knowledge is power, especially in Diabetes. If you test before each meal and at 2 hours after you will see what any particular food has done to your levels, which will enable you to cut it out, or just reduce the portion size until it's at a level where you can handle it, and which food you can eat freely.

I note you say that you had your gallbladder removed 16 years ago and therefore cannot eat fat. Is this something you have discovered for yourself because you get indigestion/other side effects? Or just something you've been told? I ask because I had mine out in 1985 and it hasn't stopped me eating anything at all. I love butter and good fats. I'm not saying that will apply to everyone by any means. Since having mine out I got rid of many of the nasty indigestion symptoms. As we always say on here, we are all differen
Click to expand...

Pattidevans said:
Hi there

There is absolutely no reason to feel ashamed. It's NOT your fault you have T2, whatever the gutter press says!

Well, it is obviously up to you, but knowledge is power, especially in Diabetes. If you test before each meal and at 2 hours after you will see what any particular food has done to your levels, which will enable you to cut it out, or just reduce the portion size until it's at a level where you can handle it, and which food you can eat freely.

I note you say that you had your gallbladder removed 16 years ago and therefore cannot eat fat. Is this something you have discovered for yourself because you get indigestion/other side effects? Or just something you've been told? I ask because I had mine out in 1985 and it hasn't stopped me eating anything at all. I love butter and good fats. I'm not saying that will apply to everyone by any means. Since having mine out I got rid of many of the nasty indigestion symptoms. As we always say on here, we are all different 🙂
Click to expand...
I had my gallbladder removed when my son was 5 weeks old. I developed gall stones during that pregnancy. The doctor thought it was gastric reflux. I was in agony and jaundiced. Worst decision of my life!
After my gallbladder was removed I suffered from diarrhea. It never went chronic diarrhea for 16 years - the only way I have found is not eating any fat, and consuming fibrous carbs - brown bread and porridge - no butter or milk - for breakfast. I think it soaks up the bile that causes the diarrhea.Oh what a lovely image!
Now, with diabetes, I have stopped carbs. I have found protein shakes can do similar. I did find metaformin impossible at first - it was so bad I couldn't leave the house! The slow release metaformin is acceptable.

Thanks for the support. I'm just sad and feel that it's too much. I am a bit battered and bruised by life just now.
 
Nanny said:
I don't think it was a diabetes nurse. Just the practice one - same nurse who gives you a smear!

It was just a GP. I had had a UTI and there was sugar in my pee - saw GP took bloods. Was checking a massive number of other things - thyroid, hormones, diabetes. Was given diagnosis by phone. That's the last time I saw GP in June.

Was told look online - but online is telling me a have a team...
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That doesn't sound satisfactory. Yes, they would check your general electrolytes as a general test. If I was you, I would insist on a meeting with either a GP specialising in diabetes care, or an Endrocrinologist.
 
Thank you everyone. It's helpful to hear I'm not taking this too seriously - that my expectations as not out of order.

I am trying to see another GP about my diabetes - I have been unable to get vaccinations as my health records don't confirm I have diabetes. I'm not sure what the doctor has actually done - other than give me metaformin.

I have very little faith or trust in doctors (from bad experiences) so it's hard to rely on them.
 
Nanny said:
Thank you everyone. It's helpful to hear I'm not taking this too seriously - that my expectations as not out of order.

I am trying to see another GP about my diabetes - I have been unable to get vaccinations as my health records don't confirm I have diabetes. I'm not sure what the doctor has actually done - other than give me metaformin.

I have very little faith or trust in doctors (from bad experiences) so it's hard to rely on them.
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You should be able to get your vaccinations irrespective of the diabetes.
 
Hi @Nanny, sorry to hear about the difficulties you're having with your GP surgery. Can you write the GP a letter asking for them to review your record to see if it's been flagged for diabetes? When I was diagnosed, the nurse updated my record with a code for diabetes mellitus (she had the code stuck on the wall on a post it note).
If you're diabetic, you should be getting referrals for screening for your eyes, a three month appointment after diagnosis, yearly diabetes check ups, and be able to apply for free prescriptions as long as you're not solely diet controlled, which is sounds like you're not if you're on metformin.
I also got a referral for a DESMOND course.

This is the sort of thing I'd be writing:
"Dear Dr X,
I was diagnosed with type 2 diabetes on DATE, and was prescribed metformin. Since then I've seen no one about it.

I'm wondering if you can review my record to see if it's been coded that I'm diabetic, as I believe that there's extra appointments (eye screening, diabetic check ups, DESMOND courses, appointments with the diabetes nurse etc.) that I should be having, and I've not had any of them.
I'm also aware that as a person with diabetes mellitus, that I should be able to apply for free prescriptions, but I haven't done so, and probably won't be able to do so until it's formally on my record.
I'm concerned that I've fallen through the cracks and am missing out on care that would help me manage and control my diabetes better. I appreciate that you're all busy and that mistakes happen, but I was hoping you could check for me so that the extra care can be initiated. I'm keen to make changes to my diet and lifestyle to help with my diabetes, and it would be helpful for me to be put in touch with the relevant health professionals to discuss what this would involve.

Thanks in advance for your consideration, and thanks also for the hard work that you and your colleagues are doing, the pandemic must have added to your workload, I appreciate the good work that you are doing.

Yours sincerely, Nanny"



Hopefully it'll chivvy them into doing something. Best wishes, Sarah
 
Windy said:
Hi @Nanny, sorry to hear about the difficulties you're having with your GP surgery. Can you write the GP a letter asking for them to review your record to see if it's been flagged for diabetes? When I was diagnosed, the nurse updated my record with a code for diabetes mellitus (she had the code stuck on the wall on a post it note).
If you're diabetic, you should be getting referrals for screening for your eyes, a three month appointment after diagnosis, yearly diabetes check ups, and be able to apply for free prescriptions as long as you're not solely diet controlled, which is sounds like you're not if you're on metformin.
I also got a referral for a DESMOND course.

This is the sort of thing I'd be writing:
"Dear Dr X,
I was diagnosed with type 2 diabetes on DATE, and was prescribed metformin. Since then I've seen no one about it.

I'm wondering if you can review my record to see if it's been coded that I'm diabetic, as I believe that there's extra appointments (eye screening, diabetic check ups, DESMOND courses, appointments with the diabetes nurse etc.) that I should be having, and I've not had any of them.
I'm also aware that as a person with diabetes mellitus, that I should be able to apply for free prescriptions, but I haven't done so, and probably won't be able to do so until it's formally on my record.
I'm concerned that I've fallen through the cracks and am missing out on care that would help me manage and control my diabetes better. I appreciate that you're all busy and that mistakes happen, but I was hoping you could check for me so that the extra care can be initiated. I'm keen to make changes to my diet and lifestyle to help with my diabetes, and it would be helpful for me to be put in touch with the relevant health professionals to discuss what this would involve.

Thanks in advance for your consideration, and thanks also for the hard work that you and your colleagues are doing, the pandemic must have added to your workload, I appreciate the good work that you are doing.

Yours sincerely, Nanny"



Hopefully it'll chivvy them into doing something. Best wishes, Sarah
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Good example of a letter for anybody who feels they are missing out on follow up. Concise and polite.
 
Leadinglights said:
Good example of a letter for anybody who feels they are missing out on follow up. Concise and polite.
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Thanks @Leadinglights 🙂, though I realise I forgot to mention foot care/assessments!
If anyone wants to use the letter, be my guest. Sarah
 
Oh, sorry to hear that @Nanny . I found one in Lothian NHS, but I'm guessing that isn't where you live.
This page on diabetes.org says it's everywhere in the UK https://www.diabetes.org.uk/guide-to-diabetes/managing-your-diabetes/education so it might be worth hassling your GP surgery to see if something similar is offered.
They do them online as well as in person, you may be able to get one one remotely, even if it's not physically near where you live.
Best wishes, Sarah
 
Windy said:
Oh, sorry to hear that @Nanny . I found one in Lothian NHS, but I'm guessing that isn't where you live.
This page on diabetes.org says it's everywhere in the UK https://www.diabetes.org.uk/guide-to-diabetes/managing-your-diabetes/education so it might be worth hassling your GP surgery to see if something similar is offered.
They do them online as well as in person, you may be able to get one one remotely, even if it's not physically near where you live.
Best wishes, Sarah
Click to expand...
I am in Lothian - Edinburgh actually. Looked up Desmond and it says closed due to covid!
Windy said:
Oh, sorry to hear that @Nanny . I found one in Lothian NHS, but I'm guessing that isn't where you live.
This page on diabetes.org says it's everywhere in the UK https://www.diabetes.org.uk/guide-to-diabetes/managing-your-diabetes/education so it might be worth hassling your GP surgery to see if something similar is offered.
They do them online as well as in person, you may be able to get one one remotely, even if it's not physically near where you live.
Best wishes, Sarah
Click to expand...
Actually I am in Edinburgh - Lothian but I just checked on the Desmond page and they are closed due to Covid.
I suppose I'm not really looking for info - more reassurance that I'm doing things ok. Help with the anxiety I am getting for the first time in my life. A sense on not being alone in this. Just a wee bit of support - I've turned my whole life on its head and it's hard.... So I want to be doing it right..
 
You're not alone @Nanny, we're all here for questions and support. I'm sure you've got family and friends who can also support you.

I'm not massively knowledgable as I've only recently been diagnosed, but I've found these forums really helpful and everyone who's responded has done so in a kind and friendly manner.

If you've got questions, ask away. I'm sure there are people in the know who can help you here. Hopefully your GP surgery can step up and help too. Make a list of questions to ask the diabetes nurse/GP when you get in.

best wishes, Sarah
 
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