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Diabetes support

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Scared of getting a dx and being able to make the potential lifestyle changes

120 replies

Graphista · 03/02/2023 16:27

I'm 50, fat, sedentary and love my carbs though try to eat relatively healthily.

I had a load of bloods taken recently as I've had a rubbish winter health wise and wanted to get to bottom of it.

Drs just called me (how rare is that?!) to have me make another appointment to test blood again as showed raised blood glucose.

On day of test I hadn't eaten before testing which is what's really worrying me!

Also family history of type 2 and yes I am kicking myself for not being more sensible but I have a lot of other health issues to contend with too inc ocd.

I'm scared I won't cope with the dx, the changes I'll need to make (creature of habit), or even that with the ocd I'll go too far the other way and be too controlling with it all.

Can anyone relate? Been through similar and can reassure?

Appointment is in 2 weeks so not urgent response from them but still...

OP posts:
JengaNonConfirming · 03/02/2023 16:32

I was diagnosed late last year, I've just tipped over from pre-diabetic range. Today I went to a Diabetes and me talk, which was really interesting. Eating or not eating before the test makes no difference, it looks at cells over the last 3 months.
You will see a diabetes nurse and hopefully be offered talks like the one I've been on, plus there was a Diabetes and Food one. There seems to be a lot of support available.

Graphista · 03/02/2023 16:43

Yea I see a lot of support, it's more that ultimately it comes down to me making changes and doing better and based on past history this is not something I am good at! So I'm scared. I am v overweight and have not been able to make the changes necessary there so how can I do this? I'm afraid I will fail and make myself v ill and just at a time when in other ways my life is going relatively well.

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TrulyFubar · 03/02/2023 16:57

My morning fasting level is my highest of the day! It's known as Dawn Phenomenon when you dump a load of glucose at the start of the day. I manage my Type 2 with glucose as Metformin and I did not get on at all. (A moment on the lips, an evening on the toilet - total nightmare but they do love dishing it out to us Fatties).

There's a lot of choice treatment-wise and you'll get lots of info and help should you get an actual diagnosis. The Diabetes Uk website is full of info too.

Graphista · 03/02/2023 17:02

I've just registered with diabetes uk website I need to read up a lot. Weirdly I was an hcp many years ago but not expert in Diabetes plus the research, information and treatments change.

Feel like if I am dx it's going to be a HUGE learning curve and major challenge for me! Sad

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JengaNonConfirming · 03/02/2023 17:05

Graphista · 03/02/2023 16:43

Yea I see a lot of support, it's more that ultimately it comes down to me making changes and doing better and based on past history this is not something I am good at! So I'm scared. I am v overweight and have not been able to make the changes necessary there so how can I do this? I'm afraid I will fail and make myself v ill and just at a time when in other ways my life is going relatively well.

I've battled my weight all my adult life, but any loss is followed by a bigger gain. I have a heart condition as well, so the diabetes diagnosis on top of that is what's pushed me to go for weight loss surgery. I now I need to do something, I've known it for ages, but I don't think I will by myself.

Graphista · 17/02/2023 16:45

Got dx today - supposedly

I'm not convinced. I don't have any classic symptoms I'm not unwell in myself at all and yet apparently my Hba1c was 103?! Last weeks was apparently much lower I am awaiting info from surgery on exact number.

This was yesterday midday ish BUT as I have insomnia to my body this is first thing in the morning.

I'm shocked, upset and angry. At myself yes but I really am struggling to believe that number when I don't feel at all ill? I've been discussing on diabetes uk and with friends who have type 2, the friends every single one when I said the number was like "omg! You must be feeling terrible at that level" and I'm not at all! If anything yesterday health wise for me was a good day. I got 13000 steps walked and got loads done.

This doesn't make any sense.

I know no test or indeed tester is perfect and correct every time but I suspect I will have a battle on my hands on this when I have appointments with dr & diabetic nurse.

Plus I've had weird results on medical tests my whole life in various ways inc when I supposedly had gestational diabetes but my sugars when testing on a home meter after that dx were always fine and I didn't make major changes and no meds.

I want to go to the appointment fully armed in terms of info on this as well as I really don't want to go on metformin which they are pushing for, I'm also worried they are gonna mess with my Mh treatment which frankly is keeping me alive Mh wise and is horrific to come off anyway, I don't want to do that.

Something just feels not quite right about what they are telling me. But I'm struggling to find info.

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Graphista · 17/02/2023 20:25

Bumping for evening crowd hopefully.

I've now got report on full blood tests from last week. Blood glucose, thyroid, fbc, kidney, liver function, serum lipid.

If anyone able/willing to review for me I'd appreciate as I have a number of concerns not just the diabetes.

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Windy1234 · 17/02/2023 20:30

Sorry to hear all this. I'm type one so slightly different but if there is anything blood glucose wise numbers I may be able to help x

Burgerqueenbee · 17/02/2023 20:44

My hbac1 was 76 on diagnosis, and I did not think I had any symptoms as I was not urinating frequently, or having excess thirst etc.
I did however have hair loss and joint pain which was mostly in my knees - there are many less well known symptoms that you would never guess are related.

Hbac1 is also not affected by time of the day so dawn phenomenon would not have caused it to be higher.
I know it can be hard to accept a long term health condition and the implications, but living with untreated diabetes is OK until it suddenly is not Flowers

Graphista · 17/02/2023 20:58

Ok result of last weeks test was 20.8 mmol/L

Yesterdays was 103 Hba1c

Neither were fasting tests

Reason tests were initially done were I am 50 I suspect menopausal and menopausal symptoms were concerning me. I'm also vegetarian and I've not been so good on iron side of things I knew so wanted that checked and also teeth have been falling apart on me!

Tests have confirmed iron and calcium are low (that's from full report - when I asked they said "all fine" Hmm)

My AP is also elevated which they also missed I want to raise with them as possible genetic issue there.

I didn't even ask for nor was asked if I wanted my blood glucose tested. Just a general "we'll do a thorough check"

If I'm diabetic I'm diabetic it sucks but then I need to get my head around it and deal with it, but I want to know the tests and results are accurate and being dealt with correctly.

I wanted to lose weight anyway so that will be a good by product of changes I need to make I'm just not very happy how it's all been handled

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Windy1234 · 17/02/2023 22:34

I think based on both of your blood test results it definitively does point to diabetes.

I know that diabetes can effect teeth, so that could be related to your teeth crumbling or it might not be related.

I am type 1 so actually not sure what steps type 2 gets treated with as I take jags for every meal and a long acting insulin aswell. I might be wrong but I think type 3 can be controlled with tablets and a lower carb diet.

It will be a lot to take in but I'm sure even though you don't think you feel j we'll just now, once your sugars are lowered you will feel much better xx

StuckInTheUpsideDown · 17/02/2023 22:56

Op the HBA1C is the one to really pay attention to. That is a long scale measurement of blood sugar control over last 6 weeks or so and therefore fasting is irrelevant. 103 is extremely high. Pre diabetes is normally 42-47, diabetes 48.

A random sample should be under 11 and really should not be 20. this figure is point in time though and would go up and down the day.

i would insist on an urgent referral to a diabetes clinic as you may need medications swiftly. A low carb diet will be your friend and would recommend researching. NHS diabetes diet advice is not always good.

I know it is horrible to get such results but untreated diabetes at this level can cause very serious irreversible harm so best to get the help swiftly.

Graphista · 17/02/2023 23:28

Next appointment with dr in a week, all he said was "change your diet" when I asked how he said we'd discuss next week. Nurse is a week after that.

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romdowa · 17/02/2023 23:38

A hba1c of over 100 is quite high. I'm quite shocked that you don't feel any bit unwell. For type 2 the management will initially be diet , they may also add medication, it can progress then to injections. Usually a combined long and short acting, progressing then to a full basal bolus regime. Ozempic is also being used as well now for blood sugar management.

MooningAtCars · 17/02/2023 23:51

I went through this nearly six months ago. But my mmol is way lower than yours. I was actually very very sick, but I have several conditions already which have made that a thing.

Others I've spoken to had a surprise high mmol and hadn't felt sick.

ninjasnap · 18/02/2023 00:29

Can you not see this as an impetus to change your lifestyle and be healthier? Genuinely, Type 2 diabetes is reversible and taking responsibility for your own health will help the NHS and ultimately yourself. There's so much help and support out there, why wouldn't you take advantage of it??

Kerfuffler · 18/02/2023 00:53

I'm a t2, I started off after diagnosis being told to cut out all sugar for a period (I think a month?, it was ten years ago), then had more tests and was initially prescribed metformin - I found the slow release tablets ok initially but then ended up not eating regularly or properly (stress and mh issues) and not taking them, and not getting proper support from anywhere for a v long time

Your hba1c is unlikely to be wrong once; twice would be super unlikely.

I've found that getting control of blood sugars this year has improved my mental health difficulties - my absolute worst times in the past have corresponded with having stupidly high blood sugar. 2 years ago my hba1c was 154; my most recent one was 48).

Good luck with getting your head round diagnosis and taking on any changes you need to make
Ask your surgery what support they can offer and whether there's any additional community support if you need it.

NeverDropYourMooncup · 18/02/2023 01:59

Mine was 37 at the last test - straight after Christmas when I know I'd been having a lot more carbs, as DP is a carb fiend and did all the cooking for 3 solid weeks of 3 meals a day plus snacks ( which I don't usually have).

To have numbers in the 100s, they've not made a mistake and could have saved your life, your sight or your legs in the process.

It's going to be a shock, but you will adapt.

Graphista · 18/02/2023 02:04

I'm struggling to get my head around the numbers when I don't feel ill.

I've started tackling diet side already, frustrated at the lack of clear info and indeed much advice is contradictory which is unhelpful.

Really don't want to go on metformin as I have ocd, agoraphobia, anxiety and depression, other physical ailments and am on several other meds that are basically keeping me alive that the side effects would mess right up! Last thing I need!

If I can manage with diet I will, I can be quite stubborn but with the ocd anything this anxiety inducing diet wise could tip over into an eating disorder. Previously I've not been allowed to diet when the ocd bad for precisely this reason.

Equally @ninjasnap I don't need kicking when I'm already very down.

I am disabled (car accident), have multiple health issues (asthma/eczema/allergies, scarred lungs from pneumonia as a kid, endo, ibs & currently some menopausal stuff too) my Mh was already hanging by a thread! I was just about coping then this.

Yes I know I need to make changes I am well aware! But from your post I suspect you don't know what this is like or how hard making those changes can be. If you've nothing positive to contribute what's the point of posting?

What on earth makes you think I don't want to take advantage of the help & support that should be available? (But so far hasn't been made available to me)

My numbers are super high and yet earliest appointment with dr isn't for a week and nurse 2 weeks, I asked for earlier believe me. I also asked for advice on diet he gave none as per previous post. Seemed to expect me to just magically know!

Effectively just dropped a bomb and left me to deal with it with no support for a week despite knowing full well my Mh issues.

The information available online is vague at best and as far as I can tell so far isn't particularly suitable for people with my other medical conditions.

@Kerfuffler I don't think the first test was a Hba1c

Good luck with getting your head round diagnosis and taking on any changes you need to make

Thank you.

It's a HUGE thing to take on board, and with family history it may well not be as simple as it might be for others (lots of genetic endocrine disorders inc quite rare ones). There's a lot to consider and it's also quite scary as yes it is a serious condition I know that, yet for now I've been left twisting in the wind, not really knowing what I am supposed to do or if what I think I'm supposed to do is correct.

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Graphista · 18/02/2023 02:10

@NeverDropYourMooncup thank you.

If the numbers are truly so high why aren't they acting more urgently?

There are also some other odd results this wasn't the only test they ran. Those results may indicate something else at play too. I plan on calling Monday morning to check some things. Also because he's requested a urine sample but didn't state if it was to be a fasting one or not.

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NeverDropYourMooncup · 18/02/2023 02:15

I think one of the best things you could do is look up the diabetes UK website.

And then if possible, book an eye test and a private podiatry appointment (NHS will take longer).

Apart from anything else, getting into a routine of caring for your feet will be something that helps distract away from eating any 'extras' - we do a lot of skin and nail care at home because of psoriasis and psoriatic arthritis and whilst it is healthier, feels nice and looks better, when I've got my hands covered in 10% urea cream for 45 minutes, I'm neither eating nor thinking about eating.

NeverDropYourMooncup · 18/02/2023 02:22

It's not an immediately life threatening thing like type 1 is - it kills slowly, quietly and insidiously. That's exactly why they introduced the 'middleaged health check' - because people don't notice.

I always assumed if in doubt, fast before a test. It won't hurt in the way that not fasting on a must-fast test does. Never heard of fasting before a urine test, but I'd imagine he wants to check for sugar, protein, etc.

You will be OK and you will manage brilliantly - I've read enough of your posts to know you're smart and brave as well as shocked and scared right now.

Graphista · 18/02/2023 03:04

Thank you. I've spent most of day on diabetes uk site. Eyes were tested recently anyway, nothing flagged. I hate beauty treatments, people touching me - it's the ocd. I don't trust peoples personal hygiene at all!

I really was having no diabetes symptoms at all.

You will be OK and you will manage brilliantly - I've read enough of your posts to know you're smart and brave as well as shocked and scared right now.

Ahhh thank you.

Yes finally my obsessive attention to detail and bloody minded stubbornness might actually be useful! Grin

It does feel v unfair because of all the other crap I've been through and now I get this too! If I write an autobiography nobody would believe it all happened to one person!

OP posts:
Graphista · 18/02/2023 13:29

Feeling pretty low today and don't know what to do with myself. So overwhelmed

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NeverDropYourMooncup · 18/02/2023 14:02

That's really good about the eye test - by the way, you now qualify for free eye tests, prescriptions and eye tests forever, if you didn't notice that on the website; you'll need to apply for an exemption certificate.

I'm not suggesting podiatry as a beauty treatment - Diabetes affects the nerves and blood supply, so foot health is absolutely vital, even more so when it's very common for sensation in the feet to be reduced as a result of nerve damage. If you are physically able to check your feet and look after them daily, fine, but you'll still need to have checks from a professional as they'll also be able to monitor circulation/pulses.

One of my best mates, a giant beardy drummer, has T2 and is absolutely evangelical about skin & foot care, so he's the one who gave me the info because he knows that Psoriasis has some features that can also make feet very vulnerable, especially when on medication - I can't remember if you've said anything that might mean you're vulnerable to pressure injuries due to immobility, but it would be so easy to develop calluses, fissures and ulcers and/or infections if your skin and nails aren't kept in top condition.

His recommendations were to use a cream/ointment that contains 10% Urea (CCS or Eucerin are great - we use standard emollient ointment everywhere else, adding the urea ones where there's a patch that's thickening or dry), never clip, pick, dig or tear at little bits of skin and a diamond metal file or glass file used little and often are far safer for dealing with calluses or patches of skin that come under pressure, such as backside, base of spine, hips or 'not that I'd know, but all the way around where bras go, especially underneath'.

He's not keen on the footcare appointments but he has lost a lot of sensation whilst trying to manage his bloods over the years, so reckons the weirdness of being checked and treated is far better than what it would be like if he lost a foot from not doing it.

He finds it's easier for him to eat very low carb with things like courgette strips instead of pasta everytime, cauliflower cheese rather than macaroni, having boiled eggs, mini cheese packs, olives, pickles and the like in the fridge ready for snacks, rather than base his meals around wholegrain stuff and still having cravings for sweet, starchy things. And he always thinks 'what extra veg can I add to this?' rather than just having things as they come. He's not spending hours in the kitchen because a) it's tiny and he isn't and b) he's been partially sighted since he was nine, but says 'it's not too hard to add a bit of a bag of frozen veg, cut up a courgette, pepper or put a handful of cherry tomatoes and a bag of leaves on a plate'.

If I'm patronising or offending you, I apologise, I don't mean to - but I do think his logic that allowing himself to be touched sooner is preferable to how much he'd need to be touched if he became an amputee or had an ulcer that wouldn't heal (some of the treatments for those sound very traumatic for some people) makes sense.