New member with a confusing background!

[SuzannaHarriet]

Hi guys, I'm Suzii and 27. I was officially diagnosed in July last year but I've been probably been diabetic much longer.

Pregnancy 2013 - GD with blood glucose of 18.2. metformin. No difference in BG, diagnosed late at 30+ weeks.
Pregnancy 2014/2015 - blood glucose of 9.9 at 16 weeks, nobody read previous notes or rechecked and just left it.
No yearly check as no letter ever received or check mentioned due to close pregnancies.

Blood tests prior to 2013 showed higher BG - one being 22.1. Nobody queried. Just put it down to me being sick.

July 2018 - in hospital, I noticed high BG of 12, no Dr had noticed. Nurse said she didn't have time to look at it and to go to GP.
GP queried type1 due to previous history but never did a blood test to check.
Put on metformin, 500mg BD
August - bought a monitor to check as I was feeling so rough and sleeping a lot and GP wouldn't give me one. BG highest recorded in August 29.4, lowest 16.7
Metformin 1G BD, Gliclazide 30mg MR BD
September - Metformin same, Gliclazide 30 AM 60 PM. Highest 29.8, lowest 16.5

NO COMMUNICATION FROM SEPTEMBER TO BEGINNING OF NOVEMBER. GP kept cancelling appointments.
Blood test HbA1C 83.

November - still double figures, linagliptin added and stopped due to reaction 4 days later.
December 13th Insulin - novomix30 10units
20th 14 units
28th 16 units
December highest 21.4, lowest 9.2 (skipping meals)

Fast forward to now. I joined a new GP practice in January and am now on Novorapid with an insulin:carb ratio of 1:4, any different and my levels are way out. I'm also on abasaglar total dose of 84 units split morning and night.

I've been referred for genetic diabetes testing and to a consultant and have an appointment on the 17th April to hopefully finally get some answers.

For all my rambling, I think I'm just curious if anyone has been through the same and still been a T2 diabetic. At the moment I'm being treated as a T2 but my diabetes nurse and GP both think I'm probably a T1 and sent the referral to check thoroughly incase it's a different type (they didn't explain that much). For some reason neither have done the antibody blood test, they're letting the consultant do that.

So really I'm guessing I've either been T1 my whole life and just managed to tick along or I'm T2 with a really bad case of insulin resistance. Either way, I dont know a lot about being diabetic as I've received next to no information these last 9 months!

*waves* so, hi again

 

[Diakat]

Hi @SuzannaHarriet
That sounds messy and unfortunate!
How the tears can confirm a type but sometimes the medics have to use a limitless guesswork.
Tagging @daisy1 for some introductory info.
Waves back.

 

[Rokaab]

So really I'm guessing I've either been T1 my whole life and just managed to tick along or I'm T2 with a really bad case of insulin resistance. Either way, I dont know a lot about being diabetic as I've received next to no information these last 9 months!

If you had been T1 your whole life you wouldn't be around to tell the tale without insulin.
It's possible you have got LADA or T1 or T2 (or one of less common variants of diabetes) now, but we can't diagnose as it would be entirely speculation and probably not helpful .
Hopefully your new GP/consultant will work out your diagnosis soon -as that will make it easier.

 

[kitedoc]

HI @SuzannaHarriet,
From my reading as a type 1 and 52 years on insulin, not as professional advice or opinion:
I believe there are blood tests which might help sort out:
a) whether you are producing any insulin yourself
b) whether you have antibodies affecting the insulin-producing cells in your pancreas gland

My understanding is that such tests help sort out whether you might be Type 1, Type 2 or LADA.
(please see and read on Home page - Type 1, Type 2 and, enter LADA into question box, upper right).
I would expect the above testing is something endocrinologists (specialists in hormonal problems
such as thyroid, diabetes etc) would know about without batting an eyelid.

It would be interesting to see what the GMC (Medical Board of UK) thought of your history
and what GPs should know about diabetes and its various types, Blood Sugar Level (BSL) ranges,
follow up of abnormal BSLs in patients, appropriate treatment and about a) and b) above.

And somewhat the same for the Nursing Board.

Your own initiative in obtaining a glucose meter and performing your own BSL checks shows
how committed you are towards sorting out what was and is happening to you in an unbelievable
situation, healthcare-wise. (and unfortunately reports suggest it happens in many countries) !!

I hope your story is sorted quickly and thoroughly so that you can receive a proper diagnosis and
be afforded the best treatment (diet, medication (where needed) and exercise).

Whether you feel duty bound to report your story to the relevant authorities to ensure others do not
suffer the same convoluted and potentially dangerous course that you have suffered is in your hands !!

Best Wishes and please let us know how you fare and whatever you need to know or
find out about diabetes. You can learn from our mistakes !!!

And Best Wishes to your family who may have suffered along with you in some of this.

Answer coming........ Mistakes...............ask for help when.....learn all that you.......Anything
soon !!.......................................................you need to................possibly can.............is possible

..... ...... ....... ......

 

[Daibell]

Hi. You are probably LADA like many of us. Mis-diagnosis is common thru lack of testing, guesswork and GP ignorance. LADA is late onset T1 and can come on very slowly which can confuse GPs and many haven't heard of T1 in adulthood (like my diabetes GP). The important thing is the right insulin treatment which you are now having. Can I assume you are also having a sensibly low-carb diet as too many carbs with insulin will cause weight gain. BTW I'm still listed as T2 as I don't want another argument with my diabetes GP and I have an excellent DN! You may need to balance your Basal insulin which can be done very gradually once things have settled. It really doesn't matter what your Bolus ratio is as long as it works for you. I'm around 1:2 ratio currently. It has gradually increased as my beta cells have continued to fail over the years; typical of LADA.

 

[SuzannaHarriet]

@Rokaab - I agree, if I'd been diabetic forever I certainly wouldn't be around, I think the nurse was thinking more late onset or slow burning which I think is LADA? However research into that suggests that (if we assume it's been since 2013) 21 is too young to be diagnosed as LADA. I know there's always exceptions to the rule though.

@kitedoc - I have my first appointment with an endocrinologist in 9 days so hopefully I'll have some answers then!
I have debated reporting it, I filed a complaint with my old GP surgery but they basically ignored it which appears to have been there entire outlook on my health quite frankly.
My mum said as a child I would fall asleep all the time out of the blue and she'd have to wake me up and give me sugar or fruit juice to make me even slightly coherent. The GP told her to give me iron supplements! When I was diagnosed with PCOS at 16 and classed as very underweight they prescribed mefenamic acid and told her I'd put on weight eventually.
Due to all medical professionals ignoring my health, I honestly wouldn't know where to start to file an official complaint with the higher ups. I'll ask at work as I work for the NHS.

Thank you all for your lovely replies. I'm crossing my fingers for the endocrinologist to have some answers

 

[SuzannaHarriet]

@Daibell - thanks so much for the reply. I've honestly only started low carb over the last 5 weeks because my original diabetes nurse told me that I needed to eat the normal amount of carbs to ensure I didn't suffer any hypos, and my new nurse never asked about my diet.
It's only from searching around online that I've realised how wrong that was.

 

[kitedoc]

@Daibell - thanks so much for the reply. I've honestly only started low carb over the last 5 weeks because my original diabetes nurse told me that I needed to eat the normal amount of carbs to ensure I didn't suffer any hypos, and my new nurse never asked about my diet.
It's only from searching around online that I've realised how wrong that was.

Good on you for reading up @SuzannaHarriet ! Low carb diet might be good for PCOS as well!!

 

[Traceymac23]

Hi guys, I'm Suzii and 27. I was officially diagnosed in July last year but I've been probably been diabetic much longer.

Pregnancy 2013 - GD with blood glucose of 18.2. metformin. No difference in BG, diagnosed late at 30+ weeks.
Pregnancy 2014/2015 - blood glucose of 9.9 at 16 weeks, nobody read previous notes or rechecked and just left it.
No yearly check as no letter ever received or check mentioned due to close pregnancies.

Blood tests prior to 2013 showed higher BG - one being 22.1. Nobody queried. Just put it down to me being sick.

July 2018 - in hospital, I noticed high BG of 12, no Dr had noticed. Nurse said she didn't have time to look at it and to go to GP.
GP queried type1 due to previous history but never did a blood test to check.
Put on metformin, 500mg BD
August - bought a monitor to check as I was feeling so rough and sleeping a lot and GP wouldn't give me one. BG highest recorded in August 29.4, lowest 16.7
Metformin 1G BD, Gliclazide 30mg MR BD
September - Metformin same, Gliclazide 30 AM 60 PM. Highest 29.8, lowest 16.5

NO COMMUNICATION FROM SEPTEMBER TO BEGINNING OF NOVEMBER. GP kept cancelling appointments.
Blood test HbA1C 83.

November - still double figures, linagliptin added and stopped due to reaction 4 days later.
December 13th Insulin - novomix30 10units
20th 14 units
28th 16 units
December highest 21.4, lowest 9.2 (skipping meals)

Fast forward to now. I joined a new GP practice in January and am now on Novorapid with an insulin:carb ratio of 1:4, any different and my levels are way out. I'm also on abasaglar total dose of 84 units split morning and night.

I've been referred for genetic diabetes testing and to a consultant and have an appointment on the 17th April to hopefully finally get some answers.

For all my rambling, I think I'm just curious if anyone has been through the same and still been a T2 diabetic. At the moment I'm being treated as a T2 but my diabetes nurse and GP both think I'm probably a T1 and sent the referral to check thoroughly incase it's a different type (they didn't explain that much). For some reason neither have done the antibody blood test, they're letting the consultant do that.

So really I'm guessing I've either been T1 my whole life and just managed to tick along or I'm T2 with a really bad case of insulin resistance. Either way, I dont know a lot about being diabetic as I've received next to no information these last 9 months!

*waves* so, hi again

You came to the right place!!

 

[Caeseji]

@SuzannaHarriet Yeah... Most of the medical folk really are not up to date which is why we are here and the lovely internet, I really do hope that you get some answers though and welcome to the forum! This place is a wonderful source of information.

 

[Smallbrit]

I'm going to agree that personal sleuthing does often help - Dr Google has a reputation, but there's a lot of good medical journal facts out there too - and welcome to the site. I hope you fnd answers soon.

Some things out of the ordinary don't always get picked up on or followed up by doctors. My GP has been one of the good ones, but I'm an oddity for him, and it took me suggesting that maybe the fact I was slim, 'young', diabetic and had hearing loss - which was exactly the same as my mother - might be hereditary. And it is. But I don't know if he'd ever put the pieces together himself, which is a pity, as it also affects the type of treatments that might work. Metformin is contraindicated for me, so it would be a waste of time if he'd prescribed it.

 

[Daibell]

@Rokaab - I agree, if I'd been diabetic forever I certainly wouldn't be around, I think the nurse was thinking more late onset or slow burning which I think is LADA? However research into that suggests that (if we assume it's been since 2013) 21 is too young to be diagnosed as LADA. I know there's always exceptions to the rule though.

@kitedoc - I have my first appointment with an endocrinologist in 9 days so hopefully I'll have some answers then!
I have debated reporting it, I filed a complaint with my old GP surgery but they basically ignored it which appears to have been there entire outlook on my health quite frankly.
My mum said as a child I would fall asleep all the time out of the blue and she'd have to wake me up and give me sugar or fruit juice to make me even slightly coherent. The GP told her to give me iron supplements! When I was diagnosed with PCOS at 16 and classed as very underweight they prescribed mefenamic acid and told her I'd put on weight eventually.
Due to all medical professionals ignoring my health, I honestly wouldn't know where to start to file an official complaint with the higher ups. I'll ask at work as I work for the NHS.

Thank you all for your lovely replies. I'm crossing my fingers for the endocrinologist to have some answers

My nephew was diagnosed as LADA at age 22 when he went into DKA and was hospitalised. I get the feeling that T1 can start at any time between birth and age 90 (yes, I saw that age in a report a few years back). One day NHS GP training will catch-up. My recently trained diabetes GP said being LADA at age 22 was very unusual and for me at age 50 impossible. So much for Warwick Diabetes training

 

[Circuspony]

I was diagnosed at 43 although the diabetic nurse at the GP surgery was convinced I was T2 - despite high ketones and the fact I barely had an ounce of fat on me by then. 10 mins on Dr Google and i soon worked out it was late onset T1.

I know they say younger people usually come down hard and fast with T1 but there do seem to be exceptions and rarer forms of insulin related issues.

Pretty awful treatment to date - let's hope you can now get the right diagnosis and support.

 

[mahola]

At least they are on the right track with the diabetes diagnosis! My GP diagnosed me with acid reflux for a year before I ended up in A&E with DKA and a type 1 diagnosis

 

[daisy1]

@SuzannaHarriet
Hello and welcome to the Forum Here is the Basic Information we give to new members and I hope you will find it interesting and helpful.


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 147,000 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.