Could anyone offer any advice if possible please?

[Maxy]

I appreciate that it's difficult for people on the forum to suggest medical advice- but I found elsewhere on the forum someone suggesting:

"you should multiply the number of grams of protein by 0.6 and cover the answer as if it were carbohydrate."

Would you say this'd be a good starting point? I'm going to do a bit more reading.

 

[tim2000s]

There are a couple of topics on this point. The received knowledge is that you use 0.5 x the weight of protein, some work that Marty Kendall has done suggests 0.54 x weight of protein. I find that I do 0.5 x Protein weight and then bolus for that number as though it were carbohydrate. I do find that I then need to use ~50% of the iu used at the meal 1.5 hours later and the same again a further 1.5 hours later when I eat a high protein low carb meal. You may find that you react differently.

 

[Maxy]

I'm going to do an independant test now.

Just tested and I am at a really good starting point of 6.8.

I did my 30 units of basal at around 10:00. I'm about to eat a nearly carb free meal- 4 egg plain omelette with 4 sausages (they contain near enough 3g carbs in total).

I'm going to do a conservative starting ratio of 1unit insulin to 10 grams protein.

29.6g protein for sausages.
28g protein (approx) for eggs.
____
57.6g /10 = 5.76 units

Will be doing 5.5 units to be on the safe side and round down instead of up.

 

[tim2000s]

Based on your 1u to 6g of carbs ratio you mentioned earlier, I would have thought that 5u would be your max.

 

[Maxy]

I ended up doing 5.5 units, I'll report back with results.

This is only speculation, but perhaps the small amount of carbs in the sausage could warrant the extra half unit? I'm a bit out of my depth here tbh, my scientific knowledge of metabolisation of carbs/protein isn't amazing. I ought to do some reading.

I've been recommended to look at the work of Dr. Bernstein by people on this forum- plus other diabetics I know.

 

[Maxy]

Blood sugar levels currently 8.0 mmol/L. So far so good.

 

[LucySW]

But Maxy, when you do your basal test, fast, yes? I understood that you have to fast completely. Protein and fat CERTAINLY have an impact. You wont be able to see anything if you eat.

BTW what Tim says about what basal should do at night, ie decline by no more than 1.5 mmol-ish, is totally right.

Someone correct me if Im wrong please.

 

[Maxy]

14:08- 6.8 mmol/L - 57.6g protein- 5.5 units bolus

15:41- 8.0 mmol/L

16:39- 7.3 mmol/L

 

[LucySW]

Hi e
At the moment I'm consistent pattern that is happening is that I will jump really high straight after eating a meal, even when I do my bolus insulin 15-25 minutes before. The insulin doesn't work for 4–5 hours on average, then eventually it all releases simultaneously and I go low. My diabetic nurse has forbid me from doing any night-time basal insulin anymore as I keep getting waking hypos regardless.

Maxy, this sounds like what Dr Bernstein describes as delayed stomach emptying, gastroparesis. Have you tried asking your team about that? It means when the timing of your post-meal rise becomes unpredictable so it's hard to time insulin right. Investigate? It might not be, of course, but apparently its common in long time Type 1s and it would explain lack of a pattern.

This is based on your early post. Dont know if would apply to your CGM charts.

 

[Maxy]

Maxy, this sounds like what Dr Bernstein describes as delayed stomach emptying, gastroparesis. Have you tried asking your team about that? It means when the timing of your post-meal rise becomes unpredictable so it's hard to time insulin right. Investigate? It might not be, of course, but apparently its common in long time Type 1s and it would explain lack of a pattern.

This is based on your early post. Dont know if would apply to your CGM charts.

Hi Lucy, thanks for your reply. My first basal test I was told it's fine to eat non carbohydrate based food, the second I was told to fast if I could- I stayed fasting other than one very small meal. Thanks a lot for bringing the gastroparesis to my attention, some food for thought- will have a look at this now. My CGM results didn't seem to support my suspicion of insulin taking such a long time to work, but did show huge rapid spikes after eating- which thinking about it would give the illusion that the bolus is taking ages to work (the onset just taking a while to break into such high levels of glucose in the blood).

 

[tim2000s]

14:08- 6.8 mmol/L - 57.6g protein- 5.5 units bolus

15:41- 8.0 mmol/L

16:39- 7.3 mmol/L

This is an interesting set of numbers @Maxy . It suggests that you should continue to bolus for protein! Keep an eye on your bg levels over the next 3 or 4 hours though, as I find this is typically when gluconeogenesis effects start to become noticeable.

 

[Gary61]

Hi, my name is Gary and I'm so sorry to hear about the problems u've been having with your control. I've been a diabetic for the last 36yrs and consider myself reasonably well controlled. I have been doing a trial with a continuous blood sugar monitor for the last couple of months and even after all these years, I'm flabbergasted at the way my body reacts to different types of food, exercise and consuming what I would regard as negligible things. What you must try and understand is that one day is not the same as the next and what you must strive for is a reasonable happy medium.
A good example of how negligible things can affect me is for an example, me consuming one or two cups of coffee when I get up in the morning which will raise my sugars quite considerably as it raises my metabolism which triggers my liver to produce sugar and so I have to inject just for my morning fix It is essential you try to ascertain the correct basal dosage required by your body. I take 22 units of Lantus at around 22:30. This only works for approx. 20hrs tops so rather than splitting my dosage, I just increase my bolus a little to compensate for the lack of background insulin when eating from about 17:00. When figuring out your night time dose, it is important to test once or twice during the early morning to monitor if you are rising or falling. After a little while of adjusting the dosage by small amounts you should be able to find that happy medium.
Once this is done the day to day control can start. From experience I can tell you that it is very rare that my sugars do not spike after eating, but what is important is the time it takes to come back down. I understand how easy it is to overcompensate, as I am as guilty as everyone else, but it does pay to be a little patient as I have discovered when using my new monitor.
I am also a big advocate in regular BG checks, in my book there is no such thing in too many tests. Just remember that anything you do or even eat, has some effect on you're blood sugars be it large or small and I will inject however many times I need to in order to keep as good as I can. It might sound a little like fire fighting, but it works for me and I eat basically anything I want to within reason.
I hope this gives a little insight to the way I live and control myself and am not in any way suggesting you should try this unless you are happy to so good luck with finding a way that suits you.

 

[Maxy]

Found an email with the results of the basal test:

"Over-night basal test: March 31st, Tuesday


20:10- Pre evening meal - 5.5 mmol/L

Injected 15 minutes before meal which was chicken tagine with couscous and steamed brocolli- counted it as 55 grams of carbs and bolused 10 units at 20:15.


00:23- 5.8 mmol/L

Injected 6 units of basal insulin (levemir) and consumed one glucotab (3.6g) to ensure I was at a more comfortable starting point as I was in the lower range.


02:14- 6.2 mmol/L

Was restless and finding it difficult to sleep because I felt low and hungry, I tried to ignore it but couldn't sleep- resisted urge to eat something.


04:06- 4.8 mmol/L

Think this might have been lower if I hadn't had the one glucotab when I was 5.8. Went to sleep sometime after this still feeling rather low.


07:10-5.6 mmol/L


11:28- 8.6 mmol/L

Was really tired from not being able to sleep so didn't get up until this time.

I did my basal dose 28 units at 11:48.


12:11- Didn't check levels but ate and bolused, tuna and mayo sandwich in soya linseed bread (22 grams carbs) Injected 4 units bolus.


14:19- 11.8 mmol/L


15:27- 15.9 mmol/L

Felt absolutely terrible and felt I needed to correct on this occasion


17:00- 11.3 mmol/L




Day time basal test: April 1st, Wednesday


10:15- 7.3 mmol/L

Waking no breakfast, did levemir 28 units.


12:15- 6.6 mmol/L


14:20- 6.1 mmol/L

Uncontrollably hungry, felt like I had to really eat something- had work to do and couldn't do anything.


15:00- Tin of tuna in water, lettuce and 2 tablespoons of mayonaise (2g of carbs total, didn't bolus and didn't think I'd need to).


16:30- 8.2 mmol/L


18:30- 9.7 mmol/L


19:00- Had dinner, risotto with chicken and chorizo, 95 grams carbs 17 units of novorapid bolus.


21:34- 14.0 mmol/L


23:36- 3.3 mmol/L

Did levemir, 6 units. Panicked and over treated hypo as I wasn't expecting it, it came out of nowhere and I didn't feel it until it got really bad- ate 4 chocolate digestive biscuits and sugary yogurt.


01:14- 11.6 mmol/L


10:19- 12.2 mmol/L

(Waking reading)

• The fasting day I was physically inactive, I was working from home at desk on computer. Completely sedentary. Even if I'd been a bit more active out and about I arguably would have needed a bit less basal. (Maybe 26 instead of 28)

• Basal insulin still isn't working in right time, in theory its meant to work in 15 minutes, mine did nothing until 11:30 where I plummeted by which time it was obvious it had all taken effect. It scares me that if I had gone to bed early I wouldn't have suspected it coming and gone hypo in my sleep."

__________________________


They keep changing my basal to above and below where I started and I'm going around in circles doing the same thing. I have no idea what's going on anymore.

 

[Maxy]

Hi, my name is Gary and I'm so sorry to hear about the problems u've been having with your control. I've been a diabetic for the last 36yrs and consider myself reasonably well controlled. I have been doing a trial with a continuous blood sugar monitor for the last couple of months and even after all these years, I'm flabbergasted at the way my body reacts to different types of food, exercise and consuming what I would regard as negligible things. What you must try and understand is that one day is not the same as the next and what you must strive for is a reasonable happy medium.
A good example of how negligible things can affect me is for an example, me consuming one or two cups of coffee when I get up in the morning which will raise my sugars quite considerably as it raises my metabolism which triggers my liver to produce sugar and so I have to inject just for my morning fix It is essential you try to ascertain the correct basal dosage required by your body. I take 22 units of Lantus at around 22:30. This only works for approx. 20hrs tops so rather than splitting my dosage, I just increase my bolus a little to compensate for the lack of background insulin when eating from about 17:00. When figuring out your night time dose, it is important to test once or twice during the early morning to monitor if you are rising or falling. After a little while of adjusting the dosage by small amounts you should be able to find that happy medium.
Once this is done the day to day control can start. From experience I can tell you that it is very rare that my sugars do not spike after eating, but what is important is the time it takes to come back down. I understand how easy it is to overcompensate, as I am as guilty as everyone else, but it does pay to be a little patient as I have discovered when using my new monitor.
I am also a big advocate in regular BG checks, in my book there is no such thing in too many tests. Just remember that anything you do or even eat, has some effect on you're blood sugars be it large or small and I will inject however many times I need to in order to keep as good as I can. It might sound a little like fire fighting, but it works for me and I eat basically anything I want to within reason.
I hope this gives a little insight to the way I live and control myself and am not in any way suggesting you should try this unless you are happy to so good luck with finding a way that suits you.

Hi Gary, I look forward to getting the chance to use CGM once I'm financially able to- it's absolutely amazing. Exercise is the factor that affects me most, I'll be getting frequent lows up to 3 days after the weightlifting, I have noticed that the lows start appears once muscular soreness sets in (assume this is down to the muscles increased uptake of blood glucose). Surprisingly negligible things do knock things out of balance, you're right.

I'd accept the one day not being the same as the next if there were any kind of regularity of pattern to hold onto- everyday seems to be completely different to the next with barely any exception. I can't really do much more basal in the evening as I just have nighttime hypos which is frustrating to say the least. I've made so many tweaks and adjustments now and nothing seems to be working.

I used to do many BG tests a day but was told to stop as it would just make me paranoid. I would do 8–10 tests, mainly through legitimate worry and just feeling rotton.

I definitely need to ensure I don't over compensate for hypos, if I weren't asleep when I had the majority of them- I'd be able to catch them sooner than I reach the delirious panic point- topped with sleepy woken up state.. makes rationalising how much I'm eating a difficulty. I've however been trying to treat hypos correctly as far as the food type is concerned.. i.e. fast acting glucose/lucosade (but not too much) then longer acting.

I'd try finding a way that suits me, but currently trying to do exactly what health professionals are telling me- been doing this for around a year.. continually asked if I wanted a pump.. then told I don't qualify, change a few units here and there then the cycle repeats. I have a pump consultation booked in June, feel it's my last hope.

 

[Maxy]

I'd be shocked if I wasn't granted the pump. I qualify for all of the following NICE guidelines:

Demonstrate your commitment to good diabetes control
• You adhere to multiple daily injections (MDI, 4 or more injections/day) - was doing 8–10 injections before, now doing 4–6.
• You check your blood glucose 4 or more times/day and act on results - was doing around 10 tests a day before, now doing 4–5
• You count carbohydrates and adjust mealtime insulin doses - been to and completed the IDAC course and believe I'm carb counting correctly.
• You adjust insulin for exercise, illness, stress- have variable basal rates for when I exercise, I feel stressed most of the time so just treat that as a fixed and invariable..
• You keep and review diabetes self-care logs - can provide them evidence

• Aged 12 or older: hypos occur frequently or without warning, causing anxiety about recurrence and a negative impact on your quality of life- (I've been recommended to go medication for anxiety/go to counselling sessions due to the impact this is all having on quality of life- I feel however that as it's directly caused by the diabetes I don't want to put another medication into my body due to something that could be controlled. Equally I feel talking to a councillor won't help, as the feelings I get are directly caused by high/low BS levels).

• Your HbA1c is still 8.5% or above despite carefully trying to manage your diabetes, including the use of Lantus or Levemir- Yes
• Hypoglycaemia unawareness- yes can be walking around 1.5 and not notice, other times feel hypo at 4, complete inconsistency.
• Extreme insulin sensitivity- It would appear this is the case but I still haven't been told conclusively what's going on after all this time.
– Marked glycaemic excursions/dawn phenomenon
– Excessive number of injections for optimised control
– Impaired exercise capacity, abnormal eating behaviour or an unacceptable number of sick days

and down to interpretation:
– Pathological fear of hypoglycaemia

I'm not sure if this is one also, but I also have a bad problem with injection sites.

Surely it'd be better to put me on the pump quicker, the amount of NHS funding spent over the entire time must be huge- plus much more if including potential counselling sessions and prescribing another drug. I could be completely wrong here, but surely the longer I live like this the higher chance there is that I'll be even more of a burden on the NHS in the future due to risk of complications.

 

[Maxy]

This is an interesting set of numbers @Maxy . It suggests that you should continue to bolus for protein! Keep an eye on your bg levels over the next 3 or 4 hours though, as I find this is typically when gluconeogenesis effects start to become noticeable.

18:51 - 6.6 mmol/L -

Does this mean that a ratio of 1:10 is about right? I've now landed very close at the starting point (6.8) It'll be near enough 5 hours soon after the bolus injection so it should have cleared. This worked in a way more comfortable/efficient way than any carbohydrate does also.

_______

In fact, looking at it- having a day with virtually no carbs, my readings have been perfect:

11:26- 9.5 mmol/L - 30 units basal @ 10AM

14:08- 6.8 mmol/L - 57.6g protein- 5.5 units bolus

15:41- 8.0 mmol/L

16:39- 7.3 mmol/L

18:51- 6.6 mmol/L

Don't wanna tempt fate, but no unpredictable surprises as of yet- everything eerily smooth and predictable.

 

[donnellysdogs]

Maxy.. Whats the prob with sites? (Sorry to wander)... Just that I have probs with legs bleeding and stomach and arms because they are so muscly. So I am pretty much limited to my bum cheeks.
I have no fat according to my consultant and this is what makes plastic sets hit wrong areas in me unknowingly.. And even with steel cannulas I am having now to change them daily because they will stop working at random times on the 2nd day.
If you have bad sites (@mushypea) I think has limited site usage too... Pumps and the cannulas need to be thoroughly investigated.
I have had it suggested that I use my boobs... But as these are small too then I am still deliberating over trying these!!

Before I was diagnosed with slow colonic transit I also experienced problems with getting levels static... I am a lower carber and most if 50 years has been lower carbing.
My stomach does not tolerate processed foods at all, the only thing that has helped me is flaxseeds and chia seeds. The total avoidance of bread, pasta and rice is also necessary. Not because of coeliac though. By eating more of the proteins, good fats etc with the seeds it has chugged my stomach along, food is digesting as it should and therefore my levels are good. (Except for the blips when my sets and sites cause me problems).

I know you mention a pump and qualufying for one but I'm actually now in the position of lacking sites and consudering having to go back to injections as sets aren't looking at being a long term option for me.

 

[Maxy]

Maxy.. Whats the prob with sites? (Sorry to wander)... Just that I have probs with legs bleeding and stomach and arms because they are so muscly. So I am pretty much limited to my bum cheeks.
I have no fat according to my consultant and this is what makes plastic sets hit wrong areas in me unknowingly.. And even with steel cannulas I am having now to change them daily because they will stop working at random times on the 2nd day.
If you have bad sites (@mushypea) I think has limited site usage too... Pumps and the cannulas need to be thoroughly investigated.
I have had it suggested that I use my boobs... But as these are small too then I am still deliberating over trying these!!

Before I was diagnosed with slow colonic transit I also experienced problems with getting levels static... I am a lower carber and most if 50 years has been lower carbing.
My stomach does not tolerate processed foods at all, the only thing that has helped me is flaxseeds and chia seeds. The total avoidance of bread, pasta and rice is also necessary. Not because of coeliac though. By eating more of the proteins, good fats etc with the seeds it has chugged my stomach along, food is digesting as it should and therefore my levels are good. (Except for the blips when my sets and sites cause me problems).

I know you mention a pump and qualufying for one but I'm actually now in the position of lacking sites and consudering having to go back to injections as sets aren't looking at being a long term option for me.

That's okay, don't mind you asking at all! My bodyfat is relatively low- my legs (especially on the top and side of the quad) have enough muscular development to make there being very limited subcutaneous tissue to inject into- running fingers over tissue you can feel lumps unsure whether these are injection site problems or just glands etc.

The top of my bum has gradually developed a bit of a swollen look which juts out to the side slightly so I've just avoided this area entirely for the time being. Stomach I have a real tendency to get lumps and have lipohypertrophy in my side (oblique/love handle are) that hasn't recovered. Do you feel the pump has site problems that are worse than injections, or is it more of a case that it has it's own new set of problems different to injections?

I'm definitely going to buy some flaxseed products and see if it provides me any stability- through sporting forums I've heard many people praising flaxseed for various benefits. Never heard of Chia seeds but will look them up too.

Interesting what you say about using on your boobs- the girls were told in the IDAC group I was in that injecting into breast tissue was a big nope- I'd imagine it'd probably be a similar situation for the pump no? I don't know the exact science, but insulin itself can do some funny things to fat tissues. I was told just before putting on the blind CGM that I could have used my lower back where there was enough fat- have you investigated this before?

Thanks for your post and bringing this stuff to my attention.

 

[Maxy]

Just for reference, here's the results of the protein bolus test.

 

[donnellysdogs]

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?