What help should I be receiving ?

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askeelsepttype2

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Relationship to Diabetes
Type 2
I have read a few forum entries that talk about a diabetic team. I have no such thing in place and the only appointment I have had was for an eye screen.
I was diagnosed with Type 2 diabetes a year ago and prescribed metformin but due to horrendous side effects I cannot take it. I take 10mg of Dapagliflozin daily and go for a blood test every 3 months. I do not understand a lot of the terminology used on this site and wondered if there is a glossary where I can look them up.
My blood sugar level is currently 78 and I know it should be about 40. I am waiting for a telephone consultation to discuss this with my GP. In the mean time I am on a low carb diet but due to other medical issues I am unable to exercise.
The only help I get comes from this site. Should I be receiving additional support?
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Hi there @askeelsepttype2 , thanks for reaching out.

I'm really sorry to hear about your side effects when you were taking Metformin, and that you don't seem to have a diabetic team in place, this is something to raise with your GP should you have any concerns about this.

On the Diabetes UK website, there's a booklet called 'What care to expect if you have type 2 diabetes' which can help give guidelines around this, the booklet is free to order from our shop: https://shop.diabetes.org.uk/products/what-care-to-expect-if-you-have-type-2-diabetes (this is also available in PDF format here: https://cdn.shopify.com/s/files/1/1...pect_Booklets_Type_2_Digital.pdf?v=1683191693 )

You raise an excellent point about how you would find a glossary of terminology helpful, and we will feed this idea back for improving our website as well - it could be a really helpful resource.

If you have any specific terms you need to define, please feel free to ask (ask, ask) away with any questions. We're all here to help, there's no question too small. I'm sure others will chime in soon to give some advice on your situation, do raise the lack of follow-up support for you with your GP during the consultation too, if you can 🙂
 
Hi and welcome.

Most of us don't have a "team" although generally for children there is a team. Patients who are on insulin and particularly those on pumps will usually have access to more support. As a Type 1 myself, I get a phone call from the consultant about once every 10 months these days and I get a blood test and toe tickle at my GP surgery and annual retinal screening. There are a number of basic checks which should be provided annually I believe to all of us but after that care is pretty wishy washy and most people here on the forum seem to agree that you are better off learning about diabetes yourself and self testing to enable you to adjust your diet to your body's response to foods and your tastes, to manage it better.

Most Type 2 patients will see a nurse at their GP practice who has overall responsibility for the diabetics within the practice and will usually know a little more about diabetes than a GP. That nurse should see them at least once a year, often the month of their birthday, to do a review. In the early months after diagnosis you would hope to be seen more frequently than once a year until your levels have stabilized, so you might get an HbA1c every 3 months for the first year and thereafter annually.

Are you drinking plenty of low carb fluids/water with the Dapagliflozin to help flush the glucose out of your body? The medication works by encouraging your kidneys to remove more glucose from your blood into your urine, so you need to drink plenty to support this function. Bit of a pain needing to use the loo a bit more frequently but necessary with this medication.

Can you tell us a bit about how you came to be diagnosed? Were you symptomatic or was it picked up via a routine blood test? Do you have much/any weight to lose or have you lost weight unexpectedly? Any other information you think might be relevant?
 
Inka said:
@askeelsepttype2 There’s a basic glossary here:

https://forum.diabetes.org.uk/boards/threads/common-acronyms-and-abbreviations.16567/
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This looks to be a very useful list of acronyms and abbreviations but does not explain most of the terms.
It looks as if the usual response for this question is to refer to the American Diabetes Association Glossary of terms: https://diabetes.org/resources/students/common-terms

However, neither will tell you that the DAFNE (and Bertie) courses are for people taking insulin and DESMOND is for people with type 2.
 
rebrascora said:
Hi and welcome.

Most of us don't have a "team" although generally for children there is a team. Patients who are on insulin and particularly those on pumps will usually have access to more support. As a Type 1 myself, I get a phone call from the consultant about once every 10 months these days and I get a blood test and toe tickle at my GP surgery and annual retinal screening. There are a number of basic checks which should be provided annually I believe to all of us but after that care is pretty wishy washy and most people here on the forum seem to agree that you are better off learning about diabetes yourself and self testing to enable you to adjust your diet to your body's response to foods and your tastes, to manage it better.

Most Type 2 patients will see a nurse at their GP practice who has overall responsibility for the diabetics within the practice and will usually know a little more about diabetes than a GP. That nurse should see them at least once a year, often the month of their birthday, to do a review. In the early months after diagnosis you would hope to be seen more frequently than once a year until your levels have stabilized, so you might get an HbA1c every 3 months for the first year and thereafter annually.

Are you drinking plenty of low carb fluids/water with the Dapagliflozin to help flush the glucose out of your body? The medication works by encouraging your kidneys to remove more glucose from your blood into your urine, so you need to drink plenty to support this function. Bit of a pain needing to use the loo a bit more frequently but necessary with this medication.

Can you tell us a bit about how you came to be diagnosed? Were you symptomatic or was it picked up via a routine blood test? Do you have much/any weight to lose or have you lost weight unexpectedly? Any other information you think might be relevant?
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I went for a routine blood test, birth month review, and the following day my GP phoned me and told me my blood sugar level was 114 and could I pick up a prescription from the pharmacy. She also arranged for me to have a CT scan to make sure there was nothing more sinister going on.
I had lost 15kilos with out being on a diet and was delighted by the weight loss, before I was diagnosed. I still need to loose 20 kilos to gain my ideal weight. The prescription was for Metformin and came with detailed instructions for taking it.
In a short time it became very apparent that I could not tolerate it. The final straw was when I soiled my self while asleep and I decided it was not worth the misery that it caused. I was too frightened to leave the house because of the sudden urge to use the bathroom and did not always make it in time. I got my life back when I informed my GP that I was not taking metformin any more..
Thank you for the advice about taking plenty of fluids whist on Dapagliflozin. The funny side is that I have taken medication for an over active bladder for the past 10 years so I'm used to needing to go.
 
Your blood glucose level still seems quite high so I wonder what dietary changes you have also made as if you have reduced your carb intake and taking the medication and blood glucose is still high and you are losing weight ( I know you say you need to) without effort then that may send up a red flag for Type 1 rather than Type 2.
You may find it useful to have a home testing blood glucose monitor so you can test the effect of your meals on your blood glucose as that will be the thing that is keeping your level high. Testing before you eat and after 2 hours when you should be aiming at no more than a 2-3mmol/l increase, if it is then your meal is too carb heavy.
 
Really sorry to hear you had a rough ride with Metformin, but pleased that you are now on a different medication. Are your bowel movements now back to normal? The reason I ask is that erratic bowel movements could also be an indication of being unable to digest your food properly and that would cause unintended weight loss and would suggest Type 3c diabetes, which is damage or disease of the pancreas, so it is really good that you have been referred for a scan to check that out. I appreciate that the bowel issues started with the Metformin, so that is the likely cause but it is important to consider that there may be other contributing factors.
Type 2 diabetics usually have to work at losing weight after diagnosis, Rapid unintentional weight loss is a red flag for Type 1 diabetes, as mentioned by @Leadinglights above, particularly with a sudden high HbA1c result like 114, so if the scan comes back all clear, do ask the GP to consider that you may possibly be a late onset Type 1.
This may all seem a bit confusing at first, but telling you that you are Type 2 is really just a guess on the part of the GP based on the fact that far more people are Type 2 than Type 1, clinical factors like being a bit overweight and of a mature age also often weight the scales towards Type 2, but Type 1 can develop at any age and it can be very serious if it is not properly diagnosed and unfortunately many GPs incorrectly believe that Type 1 only develops in children and young people, so assume that you must be Type 2 if you develop it later in life. If you are Type 1 then you will need insulin at some point and early introduction is probably best. The important thing to know is that if you start to feel unwell, with abdominal pain or respiratory difficulty or a fruity smelling breath (pear drops) you need to get urgent medical attention because you may no longer be able to produce enough insulin to keep you safe and you could be at risk of Diabetic KetoAcidosis (DKA) which is a very rare but serious consequence of uncontrolled diabetes and can lead to organ failure, coma and even death in a worst case scenario although that is extremely rare, but getting urgent medical help if you develop any of those symptoms is important. It would also be a good idea to purchase some Ketostix which are about £5 for a pot of 50 and you dip them in your urine to test for ketones when your Blood Glucose (BG) levels are high (mid teens or above)
 
Leadinglights said:
Your blood glucose level still seems quite high so I wonder what dietary changes you have also made as if you have reduced your carb intake and taking the medication and blood glucose is still high and you are losing weight ( I know you say you need to) without effort then that may send up a red flag for Type 1 rather than Type 2.
You may find it useful to have a home testing blood glucose monitor so you can test the effect of your meals on your blood glucose as that will be the thing that is keeping your level high. Testing before you eat and after 2 hours when you should be aiming at no more than a 2-3mmol/l increase, if it is then your meal is too carb heavy.
Click to expand...
Be aware that low carb is not recommended whilst taking dapagliflozin
 
I have cut out potatoes, white flour, white rice, processed foods, ice cream, tinned soups, bananas and chocolate. Every thing I eat is made from scratch so I know exactly what goes into my food.
I was constipated for over a year before I went on metformin and had a colonoscopy which showed up a small polyp which was removed. I stopped taking Tramadol and within a month normal bowel movements were restored.
I am elderly, disabled, over weight and utterly confused. There is so much conflicting information I simply don't know what to do for the best.
 
askeelsepttype2 said:
I am elderly, disabled, over weight and utterly confused. There is so much conflicting information I simply don't know what to do for the best.
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Hello @askeelsepttype2, I truly sympathise with the "utter confusion" and as far as I'm concerned that confusion has nothing to do with age or being disabled. Sadly, nothing these days is presented in a simple or straight forward way. In an ideal world we'd all move to Salford and go to:

the NHS Community Diabetes Team in Salford. We run free education sessions for people living with Type 2 at all the local gateways delivered by healthcare professionals, suitable for the newly diagnosed as well as those looking for further information or support. All you need is a Type 2 diagnosis and a Salford GP..... [Extracted from a recent posting on this General Message Board. Thanks to @Matthew Skeer and his post Wed 20 Sep "Diabetes Support in Salford"].​
​
Then of course Salford would be overloaded like everywhere else in NHS England seems to be! But your plight in neither getting straightforward and timely responses from your GP does seem to crop up in new postings on this forum far too frequently.

I can't help you with your core questions centred around what is best. I can only offer mental support from a distance and it seems to me that the advice and suggestions already offered are far more informative than anything I can tell you as a somewhat unusual insulin dependent person with diabetes. I am lucky enough to get excellent help with my diabetes and other medical issues - partly because I've been a bit "noisy" whenever I've met the "wall of silence" and I've made it my business to try and understand who is responsible for what in our local NHS - a challenge in itself. But armed with that knowledge I've appealed to my former (we've just moved) GP and to our former PALS team for the local Hospital - both times with some success in regaining aome momentum to get medical things done.

Meanwhile I hope your scan is done very soon and you get a bit more information from that. Good luck.
 
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