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T1 LADA on insulin newly diagnosed

Discussion in 'Type 1.5/LADA Diabetes' started by NewlyLADA, Mar 17, 2019.

  1. NewlyLADA

    NewlyLADA · Active Member

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    Hi everyone my name is Sarah, I’m 42 and was diagnosed in Urgent care Dec 23, 2018 with T2 at 297 BGL, I am in the US so I know we read different. My AC1 was 8.7, doctor sent me home, gave me meter and strips and put me on low carb diet told me to see regular Dr. ASAP. I got in the next day, I told dr I did not want meds as I am super sensitive to everything that I wanted to correct with diet and exercise. While my AC1 dropped to 6.5 and my average BGL was 140 now (it was 196) all the drs were so impressed by my work but I felt super sick, sick to my stomach, nausea, headache, low energy, and my lower stomach ached. I googled and read about ketones, I bought some strips and found the ketones were above the highest level, so went to Dr again (I was there at least three times a week in my first month of diagnosis) they wanted to run test to see if perhaps I had T1 not 2, and confirmed LADA, the waitlist to get in to the specialist was 3 months and I could not wait that long, my dr did not know enough about LADA to treat it, so again I googled and found Lada patients should only have insulin that meds will actually hurt what good cells you have left and make the honeymoon phase go faster. Went to specialist and was put on insulin right away, 1 month after diagnosis, three weeks later ketones went away and I feel so much better, however my number keep rising in the fasting reading 130-145 when I wake up. I was given meal time insulin but I have not started it yet as I eat like a bird right now high protein veggies and little fruit. I recently since on insulin am able to eat wheat slice with PB in morning and I don’t exceed 200.
    I believe I have had symptoms for 7-10 years I wondered if anyone else had any of these same issues. I have had anxiety for 18 yrs so I thought that was the issue.... scary to know I could have went into a coma.
    When I drank even one drink (vodka and juice) I would feel like I was going to pass out, heart would beat fast, I would have a right chest I thought it was anxiety so I would make myself go to sleep. Doing research I was most likely low.
    I have had very Blurry vision for the past 3 years
    I have had tingling in my feet when sitting in bath, or after wearing heels, very painful
    I used to sweat to the point it would drip down my body in a cool atmosphere, the sweat smelled like sweet.. (but gross) as I have never been a sweater.
    I would try to go to the gym and I always felt like I was gonna pass out after about 10 minutes on elliptical or treadmill. I tried to exercise I was walking 10 minutes and went from 125 to 66. Now I’m scared to exercise.
    I would go on hikes and by the time I was done I would almost have to crawl to my car, I did not want to drive and needed food right away. Usually would feel bad for hours.
    Heat makes me dizzy baths, traveling to hot places it was hard just walking around I felt like I was gonna pass out.
    Cold makes my BGL drop fast
    Diarrhea after eating sugary foods or fried foods I have been diagnosed and handed pills for stress, and IBS and acid reflex and GERD for years yet it all when away when I got my sugars under control.
    My hair was getting really brittle and thin.
    I have always explained to the drs over the yrs that diabetes runs on both sides of my family and I felt “outside my body” and sick all the time to the point I would not even date anymore because I was uncomfortable and sick to my stomach, had to make sure a bathroom was close by at all times.
    Sorry so long hoping someone else has been through same stuff, I live alone this is so hard and scary by myself. It’s been 3 months now and the ups and downs suck, but my stomach feels so much better.
     
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  2. NewlyLADA

    NewlyLADA · Active Member

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    I could use some advice here, is anyone seeing my post?
     
  3. Japes

    Japes LADA · Well-Known Member

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    Hello @NewlyLADA and welcome to the forums! I'm also LADA, formally diagnosed with it just over a year ago and do recognise a lot of your symptoms, a lot of which will probably ease in time as your blood sugars stabilise.

    I have seen and will reply properly later in the UK day when I'm back from work. I don't necessarily understand the healthcare system in the US (for all kinds of reasons!) but are you seeing any health care professional for support whilst you get used to insulin?

    I'll tag in @daisy1 who gives a useful general welcome post.
     
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    #3 Japes, Mar 18, 2019 at 6:30 AM
    Last edited: Mar 18, 2019
  4. DCUKMod

    DCUKMod I reversed my Type 2 · Master
    Staff Member Administrator

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    Hi @NewlyLADA - is there anything in particular you're looking for help with. Your post tells us a,lot abou. Your journey (I see it's been rough), but doesn't pose any questions for folk?

    Forgive me if I have misread what you've written.
     
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  5. Prem51

    Prem51 Type 2 · Expert

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    Welcome to the forum @NewlyLADA. I'm Type 2 and don't know much about LADA, but I expect some forum members who are LADA will be along soon.
     
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  6. daisy1

    daisy1 Type 2 · Legend
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    @NewlyLADA
    Hello Sarah and welcome to the Forum :) Here is the Basic Information we give to new members and I hope you will find it useful 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.
     
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  7. NewlyLADA

    NewlyLADA · Active Member

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    Yes I am seeing a specialist and dietitian, one who specializes in diabetes and in the foods I eat. This helps and they all think I’m doing better than 99% of others with my diet and research understanding since my AC1 dropped so much just in my first month. 8.9 to 6.5 It’s the ups and downs that are so hard for me. And because it was my first month on insulin I think my insulin was bad for the last 7 days or so as my numbers were high all of a sudden and the insulin was cloudy compared to the new pen.
    Before starting the meal time I’m gonna see if my numbers go back down with the new pen.
     
  8. NewlyLADA

    NewlyLADA · Active Member

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    I guess I’m wondering what other people feel, there are general warming signs but I wondered if people had in common symptoms with me. Like when sugars are high having to run to the bathroom, or when low feeling tingling and tight chest. Or if it is just me and perhaps anxiety.
    Or has issues with hot and cold. Baths or outside in the snow.
    I’m new at all of this please forgive me if I did not ask the right questions.
     
  9. NewlyLADA

    NewlyLADA · Active Member

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    Thank you
     
  10. Japes

    Japes LADA · Well-Known Member

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    Hi @NewlyLADA, as promised, a fuller reply.

    I definitely need to go to the bathroom more when sugars are high! I can get very sleepy if I go high fast, and often feel as if I'm wading through treacle at other times. I'm inclined to walk off highs, as much as is possible, and there's always a point on the walk where I suddenly feel brighter, clearer and myself again. Until I'm daft enough to keep going until I'm hypo! (As I did last Friday.) Blurry vision is one of my best symptoms of being high. My current optician and I are very aware my last prescription needs amending soon as my vision has settled much more, apart from the occasional bad day, since being on insulin.

    Lows - I tend to feel very spaced out, strange, slow down, and if I'm anxious already, they make me feel more anxious.

    Currently, I don't have any of the temperature issues, but before I realised I was diabetic then wrongly diagnosed the first time with T2, I think some of the symptoms of what I was assuming were hot flushes, as I was also going through the menopause, were related to how high my blood sugars were running at the time. Hard to tell now.

    Insulin can "go off" especially if it's got too warm out of the fridge, and my basal, (Levemir) in particular, can be quite temperamental the nearer to the end of the pen I'm getting. But, that may just be me!

    Picking out some other things from your opening post.

    I personally can't comment on the effects of alcohol as I don't drink it. But I believe it can contribute to lows as your liver is busy dealing with the alcohol and can't multi-task? (Please, someone correct me if I'm wrong here!)

    I don't go to the gym, or do the higher intensity kind of exercise, but I do walk a lot, and have got much more confident about adjusting my food/bolus insulin doses to allow for my long walk days of 10 - 20 miles, without any hypos, or mild ones only which respond well with some glucose and a banana. I did ease up on my walking whilst I was getting used to insulin though.

    My acid reflux is a thing of the past, but that's more to do with the amount of weight I lost.

    My morning readings were the last to come into line when I went onto insulin, it's taken several adjustments of basal to find what currently works for that. I'm under no illusions that it will change again!

    My guess is that living alone with this also adds to the anxiety. I live alone, very much by choice, and am acutely aware if I get this wrong, there's no-one around if I can't deal with it. At home, I've worked out my ways of minimising my anxiety, and have various numbers programmed into phones for calling for help, and signals for trusted neighbours, who check on me if no-one has seen me that day. (All elderly, retired, and who all check on each other - I'm just part of the gang, really.) At work, I have colleagues who I've trusted with what needs to be done, who recognise my symptoms, and one has been known to silently appear with the emergency can of Coke then a request I sit down and test. That colleague has never been wrong. But, because of the nature of my work, it's essential I'm safe to be the responsible adult with my students, most of whom operate power tools and large machinery as part of their coursework. If I'm low, I'm barred from the workshop until I'm safe again.

    Plus, I get support here. It's probably my best tactic in all this.
     
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  11. NewlyLADA

    NewlyLADA · Active Member

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    Thank you so much this is just what I was looking for, hearing the symptoms from someone other than the common ones, knowing I’m not alone.
    I really like this site, it has so much info and support!
    Today I woke up with BG of 6.7 or 121 this was what I was before! I do feel my pen had something to do with my high numbers all of a sudden.
    I walk off my highs as well but I do not need to do much as a slow walk for 20 minutes will drop me from 200 to 125 or 11.1 to 7.2 I have to carry sugar pills with me all the time as I can be grocery shopping and just walking the store and be lower than comfort. I carry KIND bars with me. They do the trick, though my purse feels more like a mommas snack pack then a purse.
    Again thanks for your words
     
  12. Japes

    Japes LADA · Well-Known Member

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    A lot of us find walking drops us really easily. It's only sensible always to be carrying glucose tablets and a snack, especially if an activity is known to drop you to an uncomfortable low - or to be prepared for the odd feelings to be a high rather than a low! I can muddle my usual symptoms up!

    It took me a while to adjust to the need for making sure I always had water, glucose tablets, a couple of snacks, test meter, insulin, and spares of needles/lancets/meter batteries with me all the time, because I never quite know what might happen.
     
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  13. Daibell

    Daibell LADA · Master

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    Hi and welcome. What insulin regime are you on and what insulins? As a T1/LADA you should be on Basal/Bolus which is two insulins; one for 24 hours and the other for meal-times. I assume you always test before driving? In the UK legally we have to test within 2 hours of driving and every 2hours during. Blurry vision indicates very high BS so hopefully that won't happen now you are on insulin. BTW, beware dieticians. There are good ones but far too many really bad ones. You need to be keeping the carbs down and don't believe people who say you can eat anything you like when on insulin. Unless you have a high metabolism having too many carbs with insulin means weight gain as the insulin will be doing it's job in converting carbs in the blood to energy or fat storage
     
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  14. NewlyLADA

    NewlyLADA · Active Member

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    Thank you for this message. I am currently on Lantus 24 hour Basel I take 6 units, I have meal time insulin that I am suppose to start 1 unit before meals but when I was running high and couldn’t figure out why is because I feel my lantus was bad, because I take so little it lasted all 28 days, but next to the new pen it was cloudy. Now on new pen 3 days numbers are good again fasting and after meals.
    I eat very healthy and I’m losing about 1 pound a week I’m not a large person and I look very healthy right now, I do not want to take insulin and eat what I want .... as I have already heard that from one dietary specialist.... I moved on to a different one, I did not like that answer.
    I did want meal time insulin because I travel 3-5 times a year to several luxury hotels, Witt hosted dinners, and I also host cruises and need to be able to have dinner With my guest ( 5 course meals) without running for my room sick to my stomach. I want to feel comfortable giving myself a meal time dose prior to leaving for Europe in May, I will be there for 25 days.
    I will be carrying lots of snacks, constant meter insulin, and water everywhere I go.
    I do need a trial run my first time with meal time with family or a friend around for 3-4 hours just to make sure I don’t drop too fast.
    Today I had 1 chocolate dipped strawberry.... it was the first sugar (pure sugar) I have had since diagnosis in late December. I went from 127-225 I’m 15 minutes so I walked and 20 minutes later I was 148... I change so fast this is why I fear the fast acting. I know no one can give advise but it’s nice to know others can listen and tell you about their experiences.
     
  15. Japes

    Japes LADA · Well-Known Member

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    It's a whole lot of trial and error, especially with unknown foods! I'd rather do the trials with the errors and learn from them than be scared of the insulin's effect. I test less on days I'm eating known foods and more when it's something I've not eaten before and only be able to do a guess.

    It's worth going out for meals with friends as a trial run before the cruises! Both for getting comfortable with all this around people, and getting used to dealing with unknown foods and insulin.

    If I know I'm going to be walking much soon after a meal, or I'm going to be cleaning/gardening/climbing step ladders, I've learned to lower my fast-acting insulin dose. It's either that or drip-feeding myself dextrose tablets whilst I'm at such activities, which I don't want to do as I don't want to get to like/crave the taste of sugar again! Interestingly, when I need the sugar because I'm low and feel I'm dropping fast, the sugar doesn't taste awful.
     
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  16. Deleted Account

    Deleted Account · Guest

    @NewlyLADA there should be no reason to run to your room to give yourself insulin.
    I have always said injecting in public and injecting publicly are two very different things. I have always injected where I am. This means injecting at my desk multiple times per day (I graze a lot). A colleague who sat opposite me for over a year had no idea I had diabetes because I just injected and made no big thing about it.
    Your experience with the chocolate covered strawberry (yum, by the way) suggests to me (although I am not a doctor) that you need to inject when eating.
    Most people find if they severely cut their carbs, their body will react to protein by raising their BG which means there is no diet which completely removes the need to inject.
    If you practise injecting with meals at home and then with close friends or family, hopefully, it will become second nature and you will not fear it so much on your cruises.
     
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  17. NewlyLADA

    NewlyLADA · Active Member

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    I do not think I would run to my room to inject if I ate without injecting I’m saying I would get super sick to my stomach and run back to my room to be sick. I don’t want to experience this.
    I know I can do it, I will start on a weekend with family around. Thank you very much, I actually work with a T1 that injects herself 4-5 times a day and she does it very quickly. I supervise a storefront so sometimes I have to excuse myself and throw food in my mouth because I will run past snack time. I’m like a infant I’m on s clock 7am, 11am, 130pm, 4pm,7pm , 9pm and my body knows it wants food lol!! So weird how eating more often smaller meals makes you lose weight too.
     
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  18. Antje77

    Antje77 LADA · Moderator
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    Are you sure this wasn't a bit of residual srawberry juice or chocolat on your finger?
     
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  19. milesrf

    milesrf Type 2 · Well-Known Member

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    Another diabetes forum, with more for LADA than most:

    TuDiabetes

    https://tudiabetes.org/

    To convert the US blood glucose meter reading to the UK equivalent, divide by 18.
     
  20. NewlyLADA

    NewlyLADA · Active Member

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    You know I wondered this myself ... it could have been
     
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