Author Topic: Urgent help/advise needed  (Read 754 times)

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Offline Aloha

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Urgent help/advise needed
« on: 24 November 2016, 05:34:01 PM »
Hello to all of you,

I was wondering if anyone is experiencing autonomic neuropathy symptoms like irregular bowel habits, bladder problems (at almost self catherization level), feet/Hand quickly going numb when sitting down, burning thighs etc., and how you are managing it?
I have already tried FODMAP, excluding gluten and other things.


I got officially diagnosed a few months ago via an urodynamics test after I kept insisting on it as doctors just could not/still cannot believe it that it is possible with my hba1c to get it. Even nowadays they still cannot really believe it.

I have been T1 for soon 15 ys (age 29 nowadays) and my Hba1c has been around the 6,5 mark for the first 10 and for the last 5 around the 6 mark with the last 5.8.
During this time I was checking my levels 8-12 times a day. 6 months ago i got my first pump and for last 12 with libre. I started getting stomach problems 4 ys ago followed by bladder problems around 2 years ago. Nowadays I eat around 100 carbs a day max.

Admittedly I always had a bit of a too tight control with lows 2,3 times a day and highs up to 14. I always hated It when my sugars went above 8 therefore over corrected quite a bit.
Through the libre I could clearly see that for lunch and dinner, after around 2 1/2 hs after food intake,  I almost always have to inject same insulin amount as originally injected to avoid another spike which for sure cost me 1000s of highs.
E.g inject 6 units at 2 pm eat at 2 30, 72 cabs, at 5 pm have a nice 6 and if I do not inject any insulin will go up to 12 or more within an hour with sugars peaking at around 16-18.
Also could see what impact a mackerel salad or so has, worst pizza, where I get like spikes after 2 1/2 and 5 hs.
Nowadays I got Libre plus Medtronic enlite to help me keep levels tight but ideally avoid Low sugars. I also got no hypo awareness left.

Thanks for your suggestions as it is having an enormous an effect on life quality and therefore appreciate all your input.

My previous entry can be found with below info.

Stomach problems - Colonoscopy did not detect any problems
« on: 19 October 2013, 12:23:02 PM »

Thanks for reading my entry.

Kind regards,
Ra

Offline Pattidevans

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Re: Urgent help/advise needed
« Reply #1 on: 24 November 2016, 09:18:12 PM »
Hiya and welcome back Aloha... just taking time to re-read your previous posts for background before responding!
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 April 2016.


© 2015 Patti Evans

Offline Pattidevans

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Re: Urgent help/advise needed
« Reply #2 on: 25 November 2016, 03:18:30 PM »
Hiya again

From what I can see from your previous posts, you are correcting all the time and then going low and eating to correct the lows.  This causes roller coaster BGs which swing high and low and that pattern can cause neuropathy as much as constant high numbers.  In your previous threads we all asked you to test your basal.  Did you ever do that and if so what did you see?

It would be interesting to see the results of a basal test and then to see what would happen if you didn't constantly correct.  I have to say, that if I eat 72g carbs at one sitting I am unlikely to have good BGs afterwards, or for the rest of the day, even after matching carbs with insulin.  Certainly from what you have said in this last post, you may not be on enough basal insulin.
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 April 2016.


© 2015 Patti Evans

Offline Aloha

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Re: Urgent help/advise needed
« Reply #3 on: 27 November 2016, 02:00:11 PM »
Hi Patti,

Thanks for your message.

I did basal testing eventually as I am on a pump now and also use Libre plus Medtronic enlite. I have been going for years to doctors and mentioned my symptoms but they never believed me that it could be aut. neuropathy related but finally got a diagnosis this year via an urodynamics test. I should have listened to you guys more as nowadays the symptoms are almost unbearable.

Can you get people with aut. neuropathy to get back to my post somehow as I just need some encouragement as probably now the fun will only really start. I am aiming hard nowadays to keep my sugars 95% of the time between 3.6 and 7.5, probably even 6.6 and the tools I have help enormously.

Thank you.

Offline Pattidevans

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Re: Urgent help/advise needed
« Reply #4 on: 27 November 2016, 04:28:09 PM »
The problem is Raphael that I don't think there is anyone on this forum with autonomic Neuropathy.  Unless they are lurking and have never posted.  I know someone with Gastroparesis who posts on https://forum.diabetes.org.uk/boards/ but I don't think that is quite the same condition.


Quote
I did basal testing eventually as I am on a pump now and also use Libre plus Medtronic enlite
Oh, I am a tiny bit surprised that you are using both the Libre and the Medtronic enlite.  I know the enlite does have alarms which the Libre doesn't but apart from that I would have thought they did the same job? By that I mean "what does the Libre do which the enlite doesn't?" Which pump are you on?  I only ask cos I know one of the pumps does work with a CGM (can't quite recall which pump it is...Medtronic? - that would make sense) and suspends insulin when you are going low.  I don't know much about it though.  Be warned that basal needs can change from time to time and do need testing when/if things look like they are not going smoothly.  I know mine need tweaking.  I had a Libre on until about 4 weeks ago and basals were spot on, but I need to do the testing again.  Fortunately I am getting another Libre sensor on Tuesday.

All I can say which may be encouraging is that some members on here who have had complications such as neuropathy and background retinopathy have found that they have vastly improved or disappeared altogether when they have had tight control for some time.  The neuropathy I had in my feet and hands around diagnosis time have gone completely.  It was very painful whilst healing though when the nerves started to come back to life.

I don't know your current diet, but I find that going lower carb helps a lot with after meal spikes.  I try not to go over 35/40g carb per meal.  Of course I don't always manage it but I can see the difference when I do.  Any higher and BGs are much less predictable.
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 April 2016.


© 2015 Patti Evans

Offline Liam

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Re: Urgent help/advise needed
« Reply #5 on: 27 November 2016, 05:56:23 PM »
The animas Vibe works with one of the CGMs I forget which but I sometimes hit the wrong button on it and it brings up the CGM data screen (empty for me since I don't have the CGM)

If I was you the first thing I would do is stop all hypos (this will mean running higher than you might like) as this can bring back hypo awareness. I've lately had something like this happen. Because my average BG has gone up I've started having hypos happen in the high 4s (false hypo) I know you are likely using your CGM to be safer around hypos but I still think bringing back hypo symptoms is important. Has your doctors or nurses talked to you about that?

Like Patti said we don't have any members that I know of that have autonomic Neuropathy.
DX Type I 1994.    Novorapid Animas Vibe pump
HbA1c 3/10 10.2%, 7/10 8.1%, 12/10 7.5%.
2/11 7.8%, 8/11 8.6% 9/11 8.3%.
3/12 62 (7.8%). 10/12 67 (8.3%)
4/13 63 (7.9%) 6/13 59 (7.5%)
1/14 71 (8.6%) 7/14 59 (7.5%) 11/14 (6.7%)
3/15 56 (7.3%) 12/15 49 (6.6%)
Ramipril: 10mg Quetiapine: 550mg Metformin: 2000mg

Offline Dollyrocker

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Re: Urgent help/advise needed
« Reply #6 on: 27 November 2016, 09:50:52 PM »
The medtronic works with the enlightenment Patti, it's pretty good apart from at night when I found it totally under-read and alarmed all night with false hypo alerts due to being laid on!


7/2014 7.2 (55) / 4/2015 7.3 (56) 1/2016 7.0 (53)
pumping with a shitty Accu Chek Insight

Offline Pattidevans

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Re: Urgent help/advise needed
« Reply #7 on: 28 November 2016, 09:17:20 AM »
That's a bit like the Libre then Dolly.  That also gives false hypo results if you lay on it.
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 April 2016.


© 2015 Patti Evans

Offline sedge

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Re: Urgent help/advise needed
« Reply #8 on: 28 November 2016, 04:49:49 PM »
Raphael

Your control parameters are far too tight - the bottom one should be hiked up to 4.1 for starters and the top one eg 7.9 which means corrections and boluses will all be calculated using 6.0 as a target - if we all had a steady 24 hr level of 6.0 we'd all have brilliant A1cs - wouldn't we?  If you use much less than 6.0 as the 'target' - well there's FAR more chance of dreadful lows, as you have experienced and it is these that destroy or hypo symptoms, when they are too frequent.

There are also adjustments which we all have to make whether we want to or not, to our diabetes in order to keep IT happy - cos if ITs happy then so are we - damned annoying but there it is.  I couldn't eat a whole pizza without suffering for days - because of the late spike and the difficulty in adjusting the bolus to deal with it.  Extended and multi-wave boluses only go SO far to help.  I can manage half of a thin crust pizza - providing it has not too much extra fatty stuff like pepperoni and meats like that on it, reasonably well on a multi-wave with any correction amount plus about 60% of the bolus for the food up front and the remainder over about 90 minutes.  Normal crust, thick crust or stuffed crust - just forget it - so I don't even try to eat them now.  Ditto rice and pasta - I can manage 50g carbohydrate-worth - any more - forget it, it's too hard to deal with working out the correct amount of insulin to have and when to have it - so I just DON'T.  Each of us has to find our own personal limit for these types of things.  It's definitely a vast improvement on MDI - but it will NEVER EVER be the same as having a fully operational pancreas and to imagine that it will ever be - is just pie in the sky - as technology stands at the moment.  So - we all have to find the pattern that we can live with, don't we?  And then - stick with that pattern - apart from very occasional rebellions !  LOL

As Patti said - from what you've described to us - it does sound to me very much as if another basal test is long overdue - and with the Libra on board, this becomes a lot easier than without it.  It's always a bit of a plod, basically takes getting on for a week and you should only test one 6-hour time block on any day and it's best to have a day off in between otherwise your body won't be reacting as it would on a normal day.  The testing isn't a thing that can ever be done quickly in a hurry so it's a flipping nuisance - but it isn't a one-off - we HAVE to do it, end of story.  Any change in the weather will automatically bring a change in basal requirements, as will other things eg change in activity levels, changes in the body eg concurrent illnesses, or stress.  Be glad you aren't a girl - monthly hormonal changes wreak havoc with insulin control for younger females and it's sheer mayhem if you are pregnant or in later life during the time 'all that' stops - which lasts years normally - but there's no actual pattern.  You blokes have it easy in comparison!

Don't forget - if you do need to change any basal rates - which I'm pretty sure you will - if you want higher or lower BG at any time, then the insulin change to make that happen needs to be from TWO hours ahead of the time you want the change to happen.
Jenny

T1 DX 1972, pumping Novorapid 24/05/11

HbA1c - 7/07 8.7, 1/08 7.8, 9/08 8.4, 3/09 7.3, 7/09 7.2, 12/09 7.3, 11/10 8.1, 2/11 8.6, 9/11 6.5 2/12 6.4  5/12 50/6.7  11/12 52/6.9  01/13 46/6.4  06/16 46/6.4  12/16 45/6.4