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Despaired

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
G

Gonzo

Member
Relationship to Diabetes
Type 1.5 LADA
Hello All.
I am 68 yes old I was diagnosed in 2001 but did not agree as I was showing no symptoms and was fit as a fiddle.Since then I have struggled to lower my blood sugars and have never felt well.A month ago feeling depressed I had a wobbly and said to myself sod it I have had enough.
Guess what I have never been better ,go to bed late get up early lots of energy and feel great.
My BS levels are at 22 -30 supposedly high yet I feel great.Has anyone else found these results.My diabetic nurse is sure I will have sticky blood bad heart ,eyes popping out of my head yet My heart is really strong as are my lungs and with perfect eye pressures,great blood pressure.I try to take insulin but sometimes it seems to work and other times fails to lower but suddenly I have a Hypo.
Any ideas
 
22-30i is definitely high! You’re surely at risk of DKA short-term. Long term your eyes won’t pop out of your head, but continuing high sugars can cause bleeds in your eyes, kidney damage, foot damage, etc. Roughly half the people registered blind are blind due to diabetes.

If your blood sugar has been high for a while, you can feel fine but the damage is still being done.

What insulins do you take? How often do you test your blood sugar? How were you diagnosed with Type 1.5/LADA?
 
Recently on 60 units a day Toujeo background and for about 4 months been Taking Fiasp at rate of 15 units per 100 g of carbs.
Told my diabetic nurse that did not suit me or work well so she upped dose to 20 units.
Also take 2000mg of Sukkarto slow release.
It's as though insulin works when it wants to and I can suddenly go into a hypo in middle of night.
I really really try to balance as told as I am awaiting two operations A knee replacement and Shoulder arthroscopy but they will not operate until blood sugars drop it's catch 22 because how can I excersise with broken knee.
I feel They have moved the goalposts as in 2004 and 2017 I had back surgery and my levels were high and I healed well.I am thinking of complaining to hospital due to discrimination against me as a diabetic.I feel they should monitor my diabetes as they have in past and operate as requested
 
Have you tried splitting your Toujeo injection? Sometimes large doses can absorb erratically. Perhaps you could try injecting half your dose in one injection then do the other half in another injection in a different place.

How’s your diet? Do you adjust your Fiasp according to the carbs in your meal? Or do you just take the same dose of Fiasp and not change it?

I’ll tag @rebrascora as she’s on Fiasp and had some problems initially.
 
Thanks Inka, to be honest I have never had many suggestions and nurse is no help.
If I decide to use insulin again I will try splitting dose.I have used Abbott freestyle for two years buying my own until they were free recently.
Also iPods for reducing injections.
I have been on pain meds for 20 years since a back injury Tramadol and oramorph and others but I am sure my high levels are due to this or other reasons.I definitely feel on top of world this last fortnight even laying a patio with the ailments that I have
 
Sorry to hear you’ve been having a tough time @Gonzo

It certainly sounds like you should restart insulin as soon as possible, but I wonder if the Fiasp just isn’t suiting you?

I used it for a few months and while it started out promisingly enough it ended up feeling quite erratic in nature in a similar way to you describe. I switched back to its older cousin NovoRapid (which actually isn’t all that rapid to be honest), and I found it much more stable and usable for me.

Hope you can find a way of gradually reducing those 20s, particularly so that the chances of you being fit for surgery are improved.

Diabetes can be a funny thing… sometimes we really don’t feel that ill at all, but when levels are that much out of kilter, unfortunate stuff can be quietly happening in the shadows that we only find out once it’s gone too far :(

I would really encourage you to call the Diabetes UK helpline (9-6 Mon-Fri) to chat through your situation. The number is at the top of every forum page, and the helpline advisers may be able to give you some helpful pointers.
 
Also I am always being asked to keep a food diary yet I use libre system which connects directly to medical centre.I faithfully enter my doses and carbs and what I eat.
I say have you looked and nurse replies I cannot see them I must get logged on yet never do I am totally at stage I cannot be bothered.
I try my best but at 68 what harm can it do to take no notice,I had a friend who has died recently ,she was diabetic never had any medicine yet died from non diabetic illness she was fine without insulin also.
I read also that in some cases blood sugars can be high due to non diabetis.
I think my pain levels are one such case another could be low testosterone,Cushing's and underactive thyroid,These need checking
 
Hi and welcome from me too.

Sorry that you have been struggling with your diabetes management and it sounds like you really haven't had enough support and education on the use of insulin and balancing it to what your body needs and the food you eat and the exercise you do. It is not a simple task to get it even somewhere near right, so having an structured education course helps to empower you to be your own diabetes expert, rather than relying on the hit and miss advice from a nurse who you see once in a blue moon. Have you ever been offered a DAFNE course or heard it mentioned?
Do you carb count and adjust your own doses or use fixed doses suggested by the nurse. Do you adjust your own Toujeo or is that also set by the nurse. Doing a course like DAFNE will teach you that and more.

Great to hear that you have Libre on prescription. Many of us had to self fund at first but it is well worth the moment if you can afford it.... and even if you can't!

Fiasp can be tricky for some people and I am one of them. It certainly isn't as straightforward as NovoRapid and you have to understand it's little quirks. For example if my BG levels are above 10 it takes a lot more Fiasp to bring them down than I would need NovoRapid, so I have to be more proactive with it and keep below 10 as much as possible. Exercise/activity seems to make it MUCH more effective than with NR, so laying your patio on a warm sunny day would be very likely to lead to hypos both in the evening and probably overnight too which would be caused by the Toujeo. Physical activity/exercise can have an impact for up to 48 hours afterwards and will have a cumulative effect, so, I imagine you might have been working on your patio for 2 or 3 days perhaps and without an insulin reduction, it is very likely you would have hypos by the second ot third day, if you didn't the first.
If you are not carb counting the room for error with Fiasp is quite significant (I think it is much less forgiving than NR) and different foods release glucose at different rates so if you had a pizza for instance, you might well hypo whilst eating it or shortly afterwards but then your levels would go high later.
There is lots to learn and understand and personally I don't think Fiasp is suitable for someone who hasn't had good training because it is quite quirky. I have found ways to make Fiasp work for me but there has been a lot of trial and error and frustration.... 2x 3 months of it in fact and if I hadn't promised myself I would stick with it for a full year the second time, I would have thrown the towel in, but it does now work for me but by no means perfect.

I would also encourage you to go back to using your insulin and ask/push for an education course to help you manage your diabetes better. Those levels are dangerously high and whilst you may feel fine because your body has got used to them, they will be building up a risk of a serious complication and when that happens, it may not be possible to fix. It is a bit like a volcano which looks to be inactive but pressure is building and when it erupts it is too late. You could suddenly have a massive bleed in your retina and wake up blind or your kidneys start to fail. You could develop ketones and go into a coma.... Do you have any means of testing for ketones? At those levels, you should be.

Good diabetes management is all about keeping yourself safe both from long term complications and short term hypos and hypers. I can see how it is difficult to accept when you don't feel ill but kidding yourself that you are the exception to the rule and you are fine running with such high BG levels, is burying your head in the sand. Please ask/push for more support.
 
Looks like our posts crossed and I see you are carb counting and adjusting your doses. Phew!

Can I ask if the nurse who is "supporting" you with your diabetes management... is she a nurse at your GP practice who has had a bit of training in diabetes or a qualified Specialist Diabetes Nurse at the hospital clinic?
 
Nurse is qualified diabetic centre nurse.
I have stopped all insulin for past month and feel fine.
No ketone test or mention of it.
I record sessions on my phone but not sure of legality of sharing I will send to anyone privately but will not name nurse.I was given the Fiasp as was told it was a rapid reaction insulin .
I have asked to go to any trial or test but told none available.
 
I am not burying head in sand I am quite open but until it can be shown to be safe without hypo or explain if I eat mainly protein low carbs my b's levels go down on their own .
I am not hungry in morning so I do not eat,if I eat when not hungry I get indegestion
 
With the insulin regime you are on, you can chose whether you want to eat or not. That is the whole point of a basal bolus system. I usually only have 2 meals a day usually breakfast and evening meal, but sometimes 3 and sometimes I don't eat at all if I am not hungry or a graze on low carb foods that don't need insulin, like tonight I have had some corned beef with pickled beetroot and salad with coleslaw. Not enough carbs to warrant an injection.
 
Rebrascora Thanks,
That is exactly as I understand it.
If I do not eat no insulin.
My Nurse insists that I eat breakfast which I never ate previously for over 40 years.
I was ok on novarapid except I was having hypos which frightened me.
She increased the Metformin to 2000mg with biggest carb meal.
Then because I was having problems with insulin working slowly or not at all she changed me onto Fiasp said it worked quicker??????
My blood readings were fine before she started messing, personally I think my stomach had too much fat and 4mm needles were too short and insulin taking too much time.
The reason I have given up is I lost hope, how can I argue with a so called specialist nurse
 
Also I have the Medtronic i-port advance on trial but again Needle may be too short for stomach.
Tried on arm fine but gamble if needle goes in straight or bent.
I think I have to be firmer and deal with head at centre.
 
Ask to go back on Novorapid if you think that will help. I know you mentioned hypos, but perhaps your regime can be tweaked (by you) to reduce those a lot. I’d also ask for a selection of needle lengths if they’re available so you can try them out.

You can buy Ketostix to test for ketones in urine for around £5.
 
Gonzo said:
Forgot to ask,when do you take your background (Toujeo)
Click to expand...
I have a different basal insulin to Toujeo, called Levemir and is shorter acting so is taken twice a day, morning and night this gives me a lot of flexibility to adjust my doses to cope with fluctuation in activity levels and what my body needs, which seems to be a lot more through the day and much less at night.... I currently use 22 units in the morning but just 4 units at night. Toujeo is taken just once a day and lasts a lot longer but is therefore less flexible. Some people take it at night and others in the morning. How your body responds to it will indicate when is the best time for you to take it. Libre is great for helping to show you this, especially if you skip meals occasionally. Doses vary from person to person but 60 units would suggest you have a bit of insulin resistance and hence the Metformin. Have you tried splitting the dose between 2 injection sites to get better absorption as sometimes that will improve sensitivity and reduce the need for increased amounts..... so I split my morning dose into 2 and inject 11 units into each buttock. It helps to "spread the load" a bit. My feeling is that it is better for the tissue the insulin is going into and provides better distribution. Then I keep my stomach for my quick acting insulin.
If you are like me and need more basal insulin during the day, then you might be better injecting it in the morning. I set my alarm for an hour before I want to get up because it takes about an hour to get going, so I inject and then go back to slee for an hour as that means it is getting into full swing when I get up which is when I most need it because like many people my liver dumps a load of glucose into my blood when I get out of bed to give me energy for the day but without enough insulin in my system it inflates my levels. Iused to inject extra Fiasp to deal with it even if I wasn't having breakfast but injecting my Levemir a bit early works well for me and I am very good at getting back to sleep, so it is no big deal. You have to find what works for you.... Treat yourself as a guinea pig and experiment on yourself..... BUT... always cautiously with one eye firmly on keeping yourself safe.

Timing of your bolus injection for meals is key to preventing spikes, so yes Fiasp is faster than NovoRapid but neither are as quick as we would all like and it works faster for some than others. Fiasp takes about 45 mins to work for me on a morning and about 15-20 mins at other times of the day which is quicker than the 75 mins and 20-25 mins that NovoRapid took but not brill still. 🙄 and definitely not what I call "Fast". I am quite sure your nurse has been sold by the manufacturers claims of how quick it is, but not for all of us, so learning how long it takes to work for you and giving it enough time to work will really improve your results. It is important to note that many people would hypo waiting 45 mins between injecting and eating (and I would at lunch or evening meal) so you have to experiment carefully by increasing it by 5 mins each time to find the optimum timing for your body and that meal. Breakfast time is usually the slowest for everyone so if you don't eat breakfast then that will make it easier.
How long in advance of eating a meal have you been injecting?

I personally am not sure that longer needles will help. The insulin needs to go into the subcutaneous fat not beyond the fat so unless you have incredibly thick skin it is unlikely to make a difference but certainly feel free/ask to experiment with that too.

I agree with @Inka that if you were happier with NovoRapid then ask to go back to it but maybe experiment with the timing of Fiasp first to see if you can make it work for you. You are entitled I believe to be prescribed an insulin that works best for you and you are comfortable with. I could certainly ask to go back to NR and as long as I had good reason, my consultant would support me with that as long as he felt I was talking sense. He knows I have a good understanding of how my body works and how I respond to insulin.

Sadly your nurse sounds like she is old school if she is advising/insisting that you eat 3 meals a day and perhaps needs some retraining. She seems to be demoralizing you instead of supporting you which is a real shame. If you stick around the forum, you can pick up lots of practical tips and tricks that she is unlikely to know... because she is taught theory not how things actually work in practice which can in fact be very different.
 
Thanks Rebrascora, as an update asked my nurse just now and she has given me 5 mm needles,wow, and as you suggested move my injection site.I will use top of my legs and buttocks, pun intended it's a pain in the a**e.
I am fairly busy and hobble around a lot but find it a pain to remove my trousers Al the time.
The nurse suggested first thing for background.
I will feel happier back on novarapid but it's the tiredness I find hard to cope with.
With my other meds I am asleep by 3pm
 
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