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Oh...

Discussion in 'Newly Diagnosed' started by Krx, Mar 21, 2019.

  1. Krx

    Krx Type 2 · Member

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    New here (although I've been lurking a bunch just recently!).

    Newly diagnosed T2 - like, today.

    So hi, all. I feel like this is going to become a second home, because right now I don't have the first clue.

    A little shellshocked; this has all effectively happened in a matter of hours, really. Except it's been going on for ages, apparently.

    I'm not one for going to the doctors, no matter how unwell I am. In fact, before yesterday, I hadn't been for 4 years, and previously 7 years before that, so my doctor tells me.

    I have a bunch of 'stuff' I just... live with. I've had problems with my back since my early 20s. Sometimes I'm fine for months, and then sometimes I get weeks at a time where even the slightest movement (say, getting out of a chair...) can threaten to put it out. Sometimes I'll get a 'nerve pinch' that'll numb a leg for days at a time. And then it'll go away.

    My eyes have been a problem since I was a small child. I won't bore you with the details, suffice it to say they just don't work like most people's eyes.

    I've been an insomniac my whole life, and nothing I've tried has ever worked for more than a few days. And when I say I'm an insomniac, I mean I get around 3 hours sleep a night, and sometimes go 72 hours with no sleep at all. I've been tired for like 4 decades. It's my default state of existence.

    I've always suffered from severe pressure headaches and 'fogginess'... but then apart from not sleeping, I spend like 12 hours a day staring at a computer screen, and have done my entire working life, as you do when you're a software developer (and really not very good at anything else...).

    I spent a good deal of time back and forth to doctors for those various things in my youth, and frankly, got nowhere. My back issues were answered with a friggin resistance band and printed exercise sheet. My eye issues were answered with exercises involving my own finger. My insomnia was met with complete indifference (or rather, complete scepticism - I must be severely exaggerating my lack of sleep), and a suggestion to cut out coffee (yeah, right... it's literally the only reason I'm able to function) and the headaches attributed to same.

    Which is why I just stopped bothering to seek medical advice.

    Like I say, stuff you learn to live with. Plus, I'm getting older. I'll be 50 next year. Looking forward to my midlife crisis, tbh.

    Then recently, the nerve pinch leg thing was getting worse... and not going away... to the point that I have a really severe throbbing pain in the butt almost constantly, and pins and needles in my foot most days.

    But I deal with it like I've dealt with my back problems for decades, usually by walking it off. I walk everywhere - I don't even drive (because of the problem eyes!). I walk miles, every single day. To work, from work, to the shops and anywhere else I need to go, and around and about because I'm a nature photographer and fortunate enough to live in a beautiful rural area with acres of woodland. I probably walk 50 miles a week, easy.

    And I'd been meaning to get an eye test, knowing full well I really needed new glasses, for some time. Partly because I also needed a new optician, because the last one was utterly useless. I finally went a few weeks ago because I was experiencing blurriness making it hard to read my screen. They ran a veritable battery of tests, including an eye pressure test, and the optician remarked it seemed very high, and that she'd like to test it again on another day. That would have been this weekend. Guess I don't really need the confirmation, now.

    So then some alarm bells started ringing, that all these things I attributed to other entirely separate long standing causes actually seemed to have one thing in common... but I'm still doubtful (I'm usually making fun of people for Googling their own diagnosis!).

    Easy way to check, though! So I went on Amazon and bought a blood glucose testing kit. It arrived Tuesday. So that evening, I unbox and give it a go. I haven't really eaten anything in 6 or 7 hours. I get a reading of 21.1 mmol/L. I look at the chart, which says 'DANGEROUS - seek immediate medical attention'. I laugh. That can't be right.

    So the following morning, I try again. And get a 19.9. My initial thought is that I need to send the thing back to Amazon.

    Still, I decide I better go seek immediate medical attention as advised, if only to get a (hopefully non)confirmatory reading. I told them my levels, but that I'm sceptical. They usher me in and take a test on their kit, and I get an 18.1.

    Oh...

    On the bright side, I guess my testing kit is working ok.

    So then I'm instantly shipped off to the hospital for a raft of blood and urine tests, and told to come back 10.30 the following morning. Today.

    Turns out I pretty much have sugar syrup oozing through my veins. I've been prescribed Metformin 500mg, to be ramped up from one a day to 3 a day over 3 weeks.

    The frustrating thing is, with a few exceptions, I already have exactly the kind of diet recommended for a diabetic. I'm pretty low carb, not through any conscious effort, but because that's what I prefer to eat; it's all salads, veg, fish, chicken, red meat, nuts and dairy. I don't do sweets or cakes (except jaffa cakes. Who can resist jaffa cakes?). I rarely eat pasta or rice. If I eat bread it's wholemeal, olive bread or 'ancient grain' bread. I can't even recall the last time I had chips! Even my pizzas are 'No Dough' pizzas, because cauliflower is life. (Ok. Bacon is life, but cauliflower is a very close second). I drink a couple of pints of German lager a couple of times a week. The last time was like 5 days before my first readings, though.

    So that doesn't seem to bode well from the standpoint of being able to manage it with a change of diet and exercise. Except I do like my fruit (grapes, plums, kiwi fruit, bananas and nectarines), which I guess I'll be cutting down on now. The only major change I think I can make really is to be more regular about my meals to avoid high and low peaks; I tend to skip breakfast, graze on a bag of mixed nuts throughout the day and eat a large meal in the evening.

    The depressing thing is learning that the leg pain and numbness is likely neuropathic and is therefore irreversible nerve damage. I honestly don't know if I can reconcile with the idea that the pain I have in my leg right now is not going to go away, when just standing still or sitting down hurts like hell and the pins and needles almost sensory overload. Touching my own foot these days is done through gritted teeth and makes me break out in a sweat.

    And I probably just wasted a bunch of money on new glasses that are gonna need changing if I manage to get my BG levels to somewhere below pure cane sugar. Still, it turns out that the few quid I just spent on a BG meter might just be the wisest purchase I've ever made.

    So, I guess all the warning signs were there. Except I could and did easily attribute them elsewhere.

    And apparently I can look forward to getting to know my doctor a whole lot better. And probably you guys. :)

    Sorry. That turned out to be quite an epically long introduction. Well done if you made it this far!
     
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  2. hankjam

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

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    Well you've done a good thing coming here. Welcome to the forum.
    I hope the tests come back with a good diagnosis and that you'll be able to act accordingly.
    I'm not going to say much more, have a look round the forum and learn as much as you can, there is loads to read.
    Good luck.
     
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  3. Antje77

    Antje77 LADA · Moderator
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    Hello, and wlcome to the forum, @Krx !
    Seems like you're already pretty knowledgeable but I'll tag @daisy1 anyway in case you haven't encountered her info sheet yet. I'd agree with cutting down on the fruit, and also the bread, no matter what kind of flour, it's still a lot of carbs.
    And don't let yourself get shooed away by your dr. if your sugars don't come down. They might not believe you when you tell them what you eat and you might have another type of diabetes.

    Good luck!
     
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  4. Smallbrit

    Smallbrit Type 2 · Well-Known Member

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    Welcome to the forum, and though I shouldn't laugh at what is quite serious but gladly being dealt with, I do love your writing style :)

    And yes, I can't resist Jaffa cakes either. :bag:
     
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  5. Bluetit1802

    Bluetit1802 Type 2 (in remission!) · Guru

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    I think I am going to like you!

    Welcome to the forum, and yes, you will be seeing a lot more of your doctor and his team (usually a diabetes nurse) and having regular blood tests for glucose, cholesterol, liver & kidney functions and anything else they throw in. Thank goodness you found this forum - if you don't find suitable advice on here, you are unlikely to find it anywhere. :)

    So .... what was your diagnostic HbA1c result, assuming you had one? You should have had one. Make sure you either ask for print outs of your test results or (if you are in England) your surgery should be putting them on line so you can ask how to register for that service. It is important you do this. Doctors rarely tell us the full story, and you need to know exactly what your blood results show. All of them.

    Now you can use your meter to tell you what your food choices are doing to your levels by testing immediately before you eat and again 2 hours after first bite - more than 2mmol/l and you ate too many carbs. Preferably a lot less than 2mmol/l.
     
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  6. welovedzig

    welovedzig Prediabetes · Well-Known Member

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    Sorry to read your news. Regarding your nerve pain - and I know we can't give medical advice - have you ever seen a chiropractor? You can usually have a free consult if they feel they can't help? If they can, it's great, sorted my sciatica out (mind you I DID end up with a bruised bottom on that day due to teasing him about his footy team :-D
     
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  7. Brunneria

    Brunneria Other · Moderator
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    Hi and welcome!

    I expect you've been reading quite a lot of the forum over the last few days, so you may have read @daisy1 's intro post already, but always worth taking a second look. :)
     
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  8. Rachox

    Rachox Type 2 (in remission!) · Moderator
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    My type 2 is well controlled and I still eat one Jaffa cake a week at my ILs for Sunday tea. Approx. 9g carbs per Jaffa, with an otherwise virtually carb free cold meat, cheese and salad buffet! :)
     
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  9. daisy1

    daisy1 Type 2 · Legend
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    @Krx
    Hello and welcome to the Forum :) Here is the Basic Information we give to new members and I hope you will find it both 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.
     
  10. Prem51

    Prem51 Type 2 · Expert

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    Welcome to the forum @Krx. At least you are still standing! Sorry if that sounds flippant, but you do seem to take your litany of problems with some good humour, so well done for that.
    I look forward to reading more posts from you. You might find that the neuropathy in your feet and legs improves as you lower your blood glucose levels.
     
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  11. Debandez

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

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    @Krx welcome to the best site on the internet. You will get so much help and advice to help you manage your condition and improve your health on here. You have had a big shock yet have kept your sense of humour. Half the battle.
     
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  12. Krx

    Krx Type 2 · Member

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    Thanks for the kind responses, guys. Currently not having a lot of fun with the Metformin... I find it ironic that I didn't really feel all that ill until I started the medication.

    Probably going a bit OTT atm with the diet - I'm pretty much no carbs so far. Although that's really not been much of a hardship; as I said, I was on a high fat low carb diet in the first place. Not that it particularly matters what I eat right now because absolutely everything (including my beloved coffee) tastes like salt :depressed:
     
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  13. Prem51

    Prem51 Type 2 · Expert

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    @Krx The side effects of the Metformin should settle down after about a week. If they persist after that you can ask your gp for Metformin SR (Slow Release), which is supposed to have less of the gastric effects.
     
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  14. Grumpy ole thing

    Grumpy ole thing Type 1 · Well-Known Member

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    Hi @Krx , welcome to the forum. Just a thought (and entirely up to you), have you seen a chiropractor about your leg?
     
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  15. Krx

    Krx Type 2 · Member

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    Well, It's been a little under 3 weeks, and my levels have gone down pretty dramatically, but only in the last week since I ramped up to the full 1500mg of Metformin - although to be honest, I'm having trouble doing 3 a day, simply because I'm not a 3 meals a day kind of person and never have been, not helped by the fact I've had stomach ache pretty much constantly since I started on them, so when I have my followup I'm going to ask for the slow release as suggested.

    I realised there were a few dumb things I was doing diet wise without even thinking about it... I tend to chug between 4 and 8 pints of semi skimmed milk a day... and hadn't realised just how much carbs plain old milk had! Thinking about it, it could be to blame for this whole mess. I've been doing that for decades. Eep.

    Anyways, from my 19-21 readings 3 weeks ago, I'm regularly reading around 6 to 7 this week, with a few 4.5s thrown in when it's been a while between meals (that's in the 'normal range, right? am I cured? :p )

    My highest levels were always first thing in the morning, my body apparently working as a very efficient glucose generator overnight - like, my readings on waking up were double or more the levels I was getting after my main evening meal. That seems to have completely stopped now. the difference between last night and this morning being only a 0.2 deviation.

    I've got a Diabetic Clinic to attend for the first time on Thursday, so hopefully I'll get something more out of that, considering my doctor wasn't exactly forthcoming with answering questions or giving advice.

    In the mean time, I think I've read most of these forums now! Great site, very helpful people :)
     
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  16. Resurgam

    Resurgam Type 2 (in remission!) · Expert

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    Wow - that is up to 350 gm of carb from the milk alone - just by cutting that out you have done your pancreas a big favour.
    Not eating all the sugars from fruit should also make a big difference - with any luck you'll be staggering around with a brain shrieking for sugar like a two year old having a tantrum - but that is good. Honest.
    It really is possible to reverse type two diabetes - and I suffered for some time with a bad back - told it was because I was too fat - but one day I went to the gym and did some pull down exercises - went home half an inch taller and my spine pulled out straight, and although all the muscles around my waist ached for three days the problem was solved.
    I had a very painful shoulder after an accident on my bike - had an xray - nothing broken take some painkillers was the advice. Months later I leaned against a shelf and my joint went back into place. I could still be suffering if not for pure chance. Perhaps I should have been more insistent that something ought to be done.
     
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  17. Traceymac23

    Traceymac23 Type 2 · Well-Known Member

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    Rather than take the metformin 3 times a day why not take 1 in the morning and 2 in the evening........check with your GP first though?
     
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  18. Rachox

    Rachox Type 2 (in remission!) · Moderator
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    Or as I do 2 in the morning and 1 in the evening :)
     
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  19. ziggy_w

    ziggy_w Type 2 · Well-Known Member

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    Hi @Krx,

    Wow -- what a difference three weeks made. Superb effort and excellent results.

    Hope you get your metformin sorted.
     
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  20. Krx

    Krx Type 2 · Member

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    Forewarning: this is gonna be another one of my verbose posts...

    well, true to form, the NHS have proved absolutely worthless, and despite only having been diagnosed less than 2 months ago, I'm afraid I've had more than enough of just being a box ticking exercise for them while they entirely disregard anything I have to say and hand out appalling, outdated advice. And they are yet to actually get my prescription right.

    Although that's a moot point now. I've decided, for better or for worse, to go my own way. I don't think I'm even going to continue jumping through their hoops any more. I've had to take nearly half my annual leave so far just to go to 10 minute slots of pointlessness with poorly informed, uninterested hypocrites.

    Like the diabetes clinic nurse who is almost as wide as she is tall, sitting there with her butt cheeks hanging over both sides of her nice wide leather office chair, telling 32 inch waisted 11 stone me how obese I am and how I really need to lose weight because it's my poor lifestyle that's caused this self inflicted disease.

    They don't believe my diet, my pain levels, my side effects, or my levels of insomnia. So what's the point?

    Partly because they left me without any meds over the easter bank holiday weekend, I managed to blag myself onto the SR version of Metformin (after they'd initially refused me twice) when they had to scrabble around to find someone to write me a prescription, and it was better from the perspective that my gripping stomach cramps went away almost immediately on switching. The thing is, though, that I've been feeling increasingly worse and worse in myself since I started on meds (bearing in mind that I didn't really feel ill in the first place before I was diagnosed!), and even though the SR relieved certain symptoms, I actually think they made other issues worse.

    Not least, the leg pain. What was a dull ache and annoying pins and needles progressed to a searing, agonising burning from my butt to my foot, and often complete loss of any feeling in my foot at all. The more I ramped up the meds to my goal levels, the worse it got. Now I realise this could also be my body reacting to basically quartering my 'normal' bg levels, but I also noticed that on days where I couldn't face eating enough to take all 3 metformin, the symptoms would ease a bit.

    The leg pain has been so bad over the last couple of weeks that I've been going like 72 hours without any sleep whatsoever, and can barely walk at times. The highlight came when I necessarily had to get up and hobble around in the middle of the night, more or less in tears, and decided to make myself a hot drink. I woke up 3 hours later face down on the kitchen floor in a puddle of what had been boiling water, still clutching the kettle. I guess at least I got some rest that night, even if I had to pass out from pain to do it.

    I relayed this to obese diabetes nurse, and she nodded sympathetically. And then stated that she didn't think this was related to metformin or indeed peripheral neuropathy.., but they're not even willing to get it checked out.

    Still, with all those waking hours to kill, I think I've read every thread on these forums and pretty much everything Jason Fung has written.

    I've been doing what's supposed to be 18:6 fasting lately, except it's more like 23:1, because I'm basically eating 1 meal a day. Largely because I've been feeling so darn nauseous from the extreme pain.

    So the last couple of days I was like 'you know what? let's just stop taking the metformin and see if I feel any better'.

    Last night I slept for 4 hours (that might not sound like a lot to you, but that's a lie in for me!), with barely a tingle in my foot and today I feel pretty darn good for the first time in months.

    Sooo, whether it's a good idea or not, I'm done with the meds and the NHS for now. I got a copy of my blood results and researched my levels for a bunch of stuff and decided what supplements I needed, and between that and diet I'm going to just deal with it my own way. Besides, my numbers have been fine for weeks now. I'm not even deviating more than about 0.2mmol/L after meals because I've basically gone no carb. Including the last two days without metformin.

    So, right now, my status is: "T2D (in rebellion...)"

    I'll check in in a few weeks and let you know how it goes from here :)
     
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    #20 Krx, May 9, 2019 at 9:26 AM
    Last edited: May 9, 2019
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