Could anyone offer any advice if possible please?

Maxy

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Sites for pump compared to injections is for me difficult because if needed I could inject in my stomach as the needle went in and directly out. With the pump and gardening or anything having a permanent needle in causes hell as it will just hit muscle in my scenario because as consultant says I have muscle and skin, no fat. The difference is just that I could with mdi at a push use different areas but now on cannulas I don't stand a cats chance....

My boobs are pretty much non existant. Never wear a bra, and a max push would probably only get one or two places maximum on the outsides as I have no plunging neckline!! My DSN suggested boobs as I am literally out of places, however I haven't tried this yet...

My Dsn suggested lower back but I can only feel bone there!! At the moment I have got sets as far to my spine as I could reach at sort of waist height.... And trying to avoid pulling trousers or skirts to that height. So far I'm on my 4th set in this area and so far so good but again as I'm lean then the max I can use will be about six cannulas in total between both sides.

My bum used to be perfect but it has shrunk alot in last 6 months and there is no fat there and every 2nd day at random times I would get highs for no reason.guaranteed at some point on 2nd day.could be night, morning, afternoon and as I very, very rarely eat during the day then my basals on the 1st day and levels were perfect - so not anything to do with eating, ratio's etc...

I haven't like you though got any lumps or bumps at all. I think @MushyPeaBrain is still using pump so perhaps she can advise on sites. I know she has limited sites.

I have been advised that another lean lady like myself has had to take a pump holiday for a couple months but for me I can't see as that will change my situation as I'm not going to put on any more fat.... So having a holiday isn't going to resolve my lack of space.

I would definitely when you get a pump have a play with all sets and discuss fully with DSN. I never found out about lean people not being advised to have plastic sets until almost 5 years after having the initial pump. I worked out for myself that I couldn't get reasonable levels with them and then DSN and Accuchek confirmed this after me raising.
Definitely worth asking as your situation is a lot different to mine.

Flaxseed honestly has been the best thing ever for me. Only started off with a teaspoon a day and worked way up to 2 tablespoons now...chia seeds I still keep to 1 or 2 teaspoons. The combination of them both for me is honestly fantastic. By far the best things for my stomach working absolutely normal. I don't bolus for them.

How is your cgm and levels now?

Sounds like perhaps your bodyfat might be lower than mine, do you know a rough percentage? Didn't you say that you run low carb? That type of lean physique sounds very similar to low carb/keto but obviously I'm only guessing!

When you say about plastic sets what do you mean? What's the alternative? I'll definitely raise these questions sooner rather than later- my pump consultation is in July.

Is the flaxseed in oil form?

My CGM was only for 6 days for when I did it. My levels still haven't been great- but I'm reluctant to make my own independent changes to my bolus/basal without doing it through nurses. Need to ensure I'm doing everything by their instruction.
 

donnellysdogs

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Fairly low carber..somewhere 12-50g plus milk in coffees...
Don't know my official body fat but my bmi is 20.1. Gym has just got a body fat measure thing in so will find out.
I've never been in ketosis that I know of when on a few odd times I've tested. I was pretty much brought up low carbing. Only changing when I had pump and it was suggested I should eat breakfast.. Toast or porridge. I am naturally a very small eater.

Normally there's 3 type of sets-
Flexible (plastic) ones;
Steel right angle ones like a needle;
And a sideways one (can't even describe them, as they truly scare the pants off me to even look at them!!)

Sets all come in sizes from 6mm upward in length. There is a company that does 4.5mm but they aren't compatible with my pump.....I have pleaded to Accuchek to consider manufacturing smaller ones--even offering to be a guinea pig!!

Flaxseed I get is ground flaxseed by Linwoods.
ImageUploadedByDCUK Forum1432670297.270273.jpg

I buy direct from them over the internet.

Is your next appt to discuss a pump. Make sure you let the consultants and DSN know that you know a pump needs a lot of self management.. Ie you would be guided as now by them but that you realise altering basals and bolus etc is really managed on a day to day basis by the pump user....
 

neilalastair

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the western high carb diet.
I have a 2 egg omlete with cheese and mushrooms in the am and take 5.5 units for that. This covers DP and the protein. I start at about 5-6 and end up at lunchtime at 5-6 . I have good control with an hba1c in the 5's and no pancreas due to surgery. I don't have gasteroparesis or at least I shouldn't have ..
 
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Gemma2

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Hi. I have just had one of thoseHypos where you feel incredibly tired and sleepy and don't recognise you are Hypo. Fortunately tested my Blood and it was 2.4. Still didn't get my act together more than at snails pace but know from past experience I go almost manic with energy once the glycogen kicks in! Just had my tea and feel back to normal. Thank God.
 

Spiker

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Yeah I get both types of hypo symptoms and the Sleepy symptoms are harder to recognise as hypo and to react to appropriately. I have just slowly trained myself to be suspicious of a hypo whenever I feel suddenly deeply tired. Even then I often fail to react appropriately until more severe symptoms kick in.
 
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azure

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Same here, Spiker. Whenever I'm feeling sleepy in the day I always test my blood sugar now.

It's a strange hypo symptom because sometimes I've been convinced I really am genuinely sleepy and tired, but after I treat the hypo and eat I feel far less sleepy quite quickly.
 
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Spiker

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It's a strange hypo symptom because sometimes I've been convinced I really am genuinely sleepy and tired, but after I treat the hypo and eat I feel far less sleepy quite quickly.
Yes exactly the same with me.
 

Maxy

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Hi everyone,

First of all thank-you for your replies, apologies for the inactivity I've been tied up in new job and as of recently pump therapy.
After a long wait it has finally happened, I did 4 days on a saline circulation- yesterday and today I've begun first insulin circulation. It has been very exciting to say the least- although it's early days I already feel fantastic. :)

I'd like to sincerely thank each and every single one of you lovely souls for replying to my post and giving me genuinely useful advice- I reckon that due to the nature of this condition; anecdotal words from those who have it themselves are more valuable than medical professionals in many ways. It seems it's difficult to grasp a full understanding the condition unless you live and breath it.
That isn't to say I have any less respect from someone who doesn't have it and has had the initiative to get their head around.

I am practically awestruck with my results of my first full day. From my memory I have never experienced blood sugars this stable, I've still got a huge amount of calibration to do and still experiencing a few hypos- but from me this absolutely unbelievable:

12176187_10208033214766961_1619354394_o.jpg


I have never been so consistently in my goldilocks zone. To put it in perspective before I was injecting 40 units of basal in the morning, I was unable to use basal insulin in the evening due to constant night-time hypos. There were some obvious patterns such as morning hyperglycaemia but otherwise no continuity- most days were train crashes like so:

12179614_10208033305489229_702323268_n.jpg


Amazingly, my basal insulin has now been cut down by just under 50%, it is so far acting predictably and with continuity. As expected, this delivery seems to be vastly superior (for my requirements anyway).

For those who are interested I've written down my first impressions:


Wednesday, 21st October
  • Last night the quality of sleep I experienced was enhanced significantly- it seems having stable BS levels overnight affects quality of sleep more significantly than I thought. Woke up feeling well rested and just what I imagine being ‘normal’ is like.
    I experienced far less anxiety/paranoia when actually falling asleep last night, the stability (fewer up/down fluctuations) at this point seems to be making me feel more relaxed/well rested.

  • I feel far more mental clarity- it’s too early to say but I feel the positivity I’m experiencing isn’t solely down to the relief of finally beginning pump therapy; I feel more on the ball, talkative, no extreme continuous mental fatigue and brain fog.

  • I’m sure others have experienced this also, but I think I might have forgotten what being healthy feels like. Even on a good day previously, (relative to my control) the delivery of my insulin combined with the way my body metabolised macronutrients meant constant up and down spikes- I feel these constantly made me feel terrible. I’ve experienced these spikes from diagnosis at age 11, I’m now 23- I reckon it’s easy to forget that what you’re feeling isn’t normal. I feel both blessed and privileged that I might start feeling normal, waiting this long will mean it’ll feel that little bit more sweet. :)

  • My vision seems to have improved, the continuous ups and downs were causing visual disturbances including black spots, flushing, floaters- could have been due to decreased blood flow to the brain. During hypos I have in the past experienced hallucinations which usually manifested themselves as strange fractal patterns and sharpening/splitting of the edge of visible objects- the brain works in mysterious ways.

  • Not yet, but over the following months I could see myself spending far less of my life actually thinking about diabetes- over the past year or so most of my waking thoughts have been consumed with whats been going on the background; I think this will offer some relief and also some trust/control.

  • I find the Medtronic 640g as a device very pleasing on the eyes, user interface is nicely designed- but the device itself is quite bulky. Stealth belt arrived today, will have to experiment with positioning. Overall I have no reservations with wearing the device itself, the actual act of injecting 7–9 times a day is equally ‘unnatural’ and disruptive in my opinion. Personally I’d do whichever type of therapy offered the most stable blood sugar levels. The size and inconvenience is a small price to pay for what it seemingly offers and I’m sure in a week even it’ll feel even more natural.

  • Again, too early to make full assessment- but due to slower ascending/descending levels it instinctively it feels as though my hypo awareness has already improved. I have noticed that both hyper and hypoglycaemic levels seem to have a different character.

    Hyper: Feels more pronounced, noticeable but effects seemingly linger around a bit longer.

    Hypo: My Freestyle Libre helps with this in a big way but nevertheless my hypoawareness feels heightened. I can really feel when I’m hypo, it hits me like a tonne of bricks but perhaps in a different way. Granted, as can be expected it’s still uncomfortable but I suspect the more gradual descent into hypo (rather than a plane spiralling out of control towards the ground) makes me able to rationalise more easily and not go into panic mode and start over-treating.

  • I have lost a great deal of weight this year, used to have a much more athletic build until I was purposely run high in order to avoid hypos- have received many comments asking me whether I’m okay due to my weight. I look forward to being able to eat normally again and once I have a safe split basal set-up running to begin my exercise routine again and gain weight.
__________________________

Thanks for taking the time to read, if you have any comments or advice on possible changes to my regime in the near future I'd hugely appreciate it.

Wish love, blessings and good health to you all. :)
 
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slip

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@Maxy I've just sat and read this entire thread (whilst at work so don't tell the boss!) - I'm just so glad you've overcome your issues, as I was reading it I was hoping that the most recent update was from you with a great outcome, thankfully it was. You're sounding a million times more positive and so far the results have been fantastic.

There are some people on this forum that give good advice and help without any return (other than a thanks from the receiver) that really do deserve the 'Legend' status!
 
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Maxy

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@Maxy I've just sat and read this entire thread (whilst at work so don't tell the boss!) - I'm just so glad you've overcome your issues, as I was reading it I was hoping that the most recent update was from you with a great outcome, thankfully it was. You're sounding a million times more positive and so far the results have been fantastic.

There are some people on this forum that give good advice and help without any return (other than a thanks from the receiver) that really do deserve the 'Legend' status!

Couldn't agree more. :) I think I spoke too soon and started having some odd spikes after that post funnily enough- but things will get better. I'm currently doing some background reading 'Pumping Insulin' by John Walsh.
Something odd I've noticed is yesterday during the first portion of the day (fasting) I was hovering on the low side (levels hover around the 4.5–5.0 mmol/L mark.. today I've been hovering between 9.0–11.00 mmol/L.

Do you reckon this could have been because of basal (levemir from injections previous day or so) hovering around? I'm just wondering whether there's some kind adjustment period so to speak as the body's hormonal/metabolic routine has been changed.
 
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slip

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I guess it could have been the levemir, but I'm no pumper! Hows it been since your last post?
 

Maxy

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Hey Slip,

The figures themselves haven't been perfect by any means but the steadiness and control has been fantastic, thanks for asking man.
Had some great night figures, hope you didn't get clocked by the boss the other day by the way! :woot:

Control over past few days below:

12180762_10208042734084938_636838934_o.jpg

12177387_10208042734044937_1298879299_o.jpg


Hope you're well, all the best.
 
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slip

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LOL - the boss didn't catch me!

Well the highs aren't as high and the lows aren't as low so thats progress, how long have you had the libre, are you finding having it helps catch the lows before they get too low, and also let you correct the highs?
 

Juicyj

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Fabulous news, nice one ;)

Hoping to get a pump, just been knocked back at the first hearing but seeing my doc next week to push ahead and hope at the next hearing I get approval.
 
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Maxy

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LOL - the boss didn't catch me!

Well the highs aren't as high and the lows aren't as low so thats progress, how long have you had the libre, are you finding having it helps catch the lows before they get too low, and also let you correct the highs?

Boss should give you the time to use the forums to help 'manage your diabetes'. :woot:

I've had a great experience with the Libre so far, been using it for a little while now- started in Summer. I feel that being able see a more detailed picture of what the blood sugars are doing is (for me) more important and beneficial than administration of medication itself.

As I have always had dramatic up and down spikes (despite trying everything but the insulin pump), the traditional means of doing a calculated bolus from a standard meter to not be constructive. The meter can tell where you are at that second in time but has no idea where you're moving to. This would mean a bolus injection for example wouldn't be accurate.

Also found this useful in respects to hypo treatment. If I saw a pre-bed reading of 6.8 mmol/L before- in the books this would be a suitable reading to go to bed at; but for me this could have equalled hypo in my sleep as I had no idea where my blood sugars are moving.

Not having to do as many finger pricks is great, but it's like not having to do as many injections is to the pump. It's just a trivial bonus/convenience- the true benefit is the security and the awareness. I'd do 20 injections a day if I knew it were the means of getting the best control possible.

But in answer to your question, yes absolutely. It hasn't made me affect the way I treat highs and lows so much, but has affected the when I treat them (and making adequate preparation to do so). Have had quite a number of 'catching the ball' moments, where I've been plummeting and treated the hypo at the correct time and avoided a nasty hypos (which have a knock on effect causing highs).

I don't agree with their opinion, but the DSNs at my clinic talk about something called 'hyperawareness' where supposedly it's bad to do too many tests (as the patient will get overly paranoid and worried about their levels). I think this is far from the truth, the anxiety caused by having no idea what the blood sugars are doing hugely out-weighs being in the know. I reckon that testing is equally as vital as administration as medication, if not more important in many ways.

I'd like to go the CGM route if it becomes financially viable for me- I'd highly recommend Freestyle Libre to anyone, only personal reservation I have is the price (a real sting IMO).
 
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Maxy

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Fabulous news, nice one ;)

Hoping to get a pump, just been knocked back at the first hearing but seeing my doc next week to push ahead and hope at the next hearing I get approval.

I'm sure your outcome will be positive. :) The guidelines seem to be a grey area, I spent well over a year of speaking to several different professionals who all had a different opinion of whether I was eligible or not. When I finally was given the green light to see the pump consultant I qualified for the pump on 10 different guidelines, I needed to qualify on only one.

You would have thought whether someone could receive the therapy would be a clinical yes/no, black and white answer.. but seems not. Some people in some areas seem to be able to receive therapy for fear of needles- also others will have it pushed at them because they are negligent and don't do their injections (and killing themselves), even if they haven't attended a carb counting course.

In worst case scenario they decide to not offer it to you this time, keep trying- move to a different clinic or at least tell them you will move and would like a referral. Many answers I've heard over the last year have been rubbish- I don't doubt for a second that if our National Healthcare weren't at financial breaking point that everyone would be given it without the bat of an eyelid if it were possible.
 

Maxy

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It's a miracle! :angelic:

12182236_10208047986056234_1525885509_n.jpg


Thank-you holy mother of Medtronic.. this has been the best most stable day I have ever had in my entire life (discounting pre-diabetes).

Average Total Daily dose of around 22 units, less than half I was using before.

I've been fine driving for 2 hours (no nasty surprises), I can actually eat and I'm not scared of eating.
No point wanting to change time but I wish I had pursued this sooner- it's very reassuring that children are being given this treatment so freely now-a-days. Trying to control blood sugars during hormonal changes, varying activity, school work and stress was crazy difficult- great to see attitudes and views on treatment/guidelines have taken a step forward.
 
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Maxy

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Hi everyone,

I just got my appointment summary with blood test results back from the department of diabetes and endocrinology for an appointment I had on Nov 5th.

I only just noticed that on my list of complications the Renal assessment reads:
"Protein secretion: Intermittent MAU; Renal impairment: Yes, CKD Stage 1;"

I'm rather worried- is this something to be concerned about?

Surely, as my Doctor and DSN both viewed and reviewed my results they would have noticed this and told me? Unless my Doctor thought my background retinopathy was this?
 
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donnellysdogs

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If, like my GP advice notes from path labs etc say normal. Then my GPs do not look at individual broken down levels... On the top left hand side of all my test results the overall readings say "normal".... However when I looked at them say for my B12 last year, it was far in excess of target ranges and I had to take this matter up with my GP and endo...even though individual readings had exclamation marks next to them they were just filed on the system as 'normal'.

I have no knowledge of your assessment so cannot comment but I would advise discussing this with your GP.

All results and documents to GPs should be scrutinised by patients... And this is why online access to view records is being made 'more open' to us.
 
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