So Frustrated....

[Lenwe]

I know many of you have been in this position, but I just needed somewhere to rant (and possibly get some help!)

I've been in a hyper-hypo loop now for years. I had my Doctor read the riot act at me because my A1C was at 91and has dropped a bit since then, but it still over 80.

I've been seeing a specialist for over 3 years and in that time we have managed to change my injection sites and change my needle length. that's it. My glucose levels have not changed and I'm still in Hyper-Hypo flux. On top of that the dietician he referred me to tried to hospitalise me with outrageous carb-insulin ratios which I knew were wrong but had to follow for fear of not getting any further help if I didn't.

I recently went back to my GP to be referred to a different specialist as I really feel that something more should have been done in 3 years, but I've now got to wait for a month to even see if another hospital will be willing to take me.

It just feels like I'm going to lose a limb or my sight or be hospitalised before anything is going to get done.

Anyone know a way out short of attempting a hypo so insane that they have to pay attention?

 

[Joe261985]

It sounds like you are doing the right thing with pushing for a different consultant if you are not happy with with the one you have. Sadly there is no 1 way to treat diabetes as we are all different which means that consultants have different ideas of what works best and while it may for one it does not always forget others.

It sounds like you have some understanding of carb ratios as you are questioning the dieticians amounts, have you been on a carb course as if not that would probably be a good place to start asking your diabetic team to get you on.

I would say if you are comfortable adjusting your amounts then with lots of testing to see the impacts you could stray from what the dietician told you especially if it is causing hypos that are then getting you in the hypo/hyper rollercoaster. If you are not comfortable adjusting your dose I would keep a food diary and try testing 2 hours after every meal and keep contacting the diabetic nurse for advice with them figures as they should help with adjustments.

It is all about finding a pattern that works for you and sadly it does take time and sometimes we don't get the most helpful teams who think that everyone can respond the same to treatment but at the end of the day it is your health so keep pushing them especially if the ratios are wrong and you need help adjusting doses while you wait to see a new consultant.

 

[catapillar]

What's causing the hyper-hypo loop? Are you going high after eating then overcorrecting to cause a hypo? Or are you going low and over treating to result in a hyper?

Have a think about what is causing it, then you can do something to address the cause.

If your on a basal/bolus regiem the first step would be basal testing to check your background insulin is the right dose for you - https://mysugr.com/basal-rate-testing/

Once your confident the basal is right you can look at getting the right insulin to carb ratio for your meal. You might need different ratios at different times of day. You might need to split you bolus for fatty meal. You might need to take protein into account for low carb meals. You might need to consider pre bolusing to try and avoid pot prandial spikes.

There's a free course on carb counting - https://www.bertieonline.org.uk

Then you can look at what your correction dose is and figure out how many grams of carbs you need to treat a hypo.

I would expect basal testing, carb counting course, checking for lipohypertrophy to be the first round approach from any specialist.

 

[Nidge247]

Hi @Lenwe

I would reckon that we can all remember a hyper-hypo loop until we took control of the condition.

For me, this was by following LCHF and carb-counting; the combination of which took my Hba1c down from 101 to 51. It is now remaining in the 40's.

Are you following a low carb lifestyle, and do you carb count for your ratios? If not, this may be why you are stuck in the loop still.

I went on the DAFNE course to learn carb counting - referred by my GP and DSN. However it was my own choice to follow LCHF as the NHS still doesn't advise it; though they are now watching as they can't explain away how it helps the majority of people on it.

This is an easy thing you can do yourself, while you wait for hopefully a more helpful consultant.

 

[azure]

Unless you're eating excessive carbs, there's no need to eat very low carb to get good control. I believe Nidge isn't on insulin as he has LADA so the advice for them is different. He's trying to control his LADA by diet for now so is in a different situation.

Rollercoaster blood sugars are usually due to a combination of things. Look at @catapillar 's links above. That's the advice you need. I'd also add advance bolusing. You need to bolus a sufficient amount of time before your meal. Even the modern analogues need injecting further in advance than you've probably been advised.

My HbAa1C is 34 and that's achieved by judicious use of insulin.

 

[mist]

I would like to post my opinion but don't feel I am allowed to do so as I feel it will get removed for not conforming with the general consensus. Shame really, as I had some good advice for you after I went five years in a simailar situation.

Hope you get things sorted out man.

 

[Lenwe]

Hi all, thank you for your replies.

To answer some of the questions;

I do carb count to an extent, but the trouble I'm finding is that different carbs affect me in different ways, so a portion of potato will be different from the same amount of carb in rice for instance. This is causing a major headache.

I've been monitoring my sugars and injecting like a pump system would with 2 unit increments hourly to try and stop the over adjustment of insulin but what I'm finding is that from about 6am to 4pm insulin has a negligible effect, then at around 4 (ish) the whole lot seems to kick and I hypo. It has been suggested that it's stress causing this, but as I'm only at work during this period, that stress cannot be eliminated, I also get the same trend on the weekend where the same stress is not present :/

I haven't done a basal calculation for a while so I may revisit that one, thanks @Caterpillar for the links.

@mist at this point buddy any and every opinion is welcome, from the reception I'm getting from consultants I'm not a normal diabetic so I'm fully prepared for the fact that what I need to do may well be in non-conformity of the norm!

 

[asparagusp]

Is there such thing as a "normal" diabetic? I suggest you pm mist if you would like his views! He's been there, worn the t-shirt etc!

 

[AndyS]

Wait, why are you doing small doses and trying to mimic a pump when you are on basal/bolus?
I wonder if what you are seeing when you hypo is insulin stacking, then you are bouncing back and going high.

With all sorts of odd amounts of the different insulins in your system it really is not surprising that things are completely out of whack and confusing as hell.

A couple of things that may help you to get started down the right path.
- Unless you are really high hold of doing corrections between meals so and add your correction on at the next meal. For example if you test and are say 10+ around 2pm (lunch at 12) let that sit and see what it looks like when you come to your evening meal.
- Get your basal rates right first - Until you are more or less flat with your basal insulin you really don't stand a chance of getting anywhere.
- Recheck your insulin to carb ratios at different meals. To help out try and have a pretty similar meal at different times. As you have found you seem to respond differently to different carbs (even with same totals) this can be expected, I know that breads and such kick my butt.
- Keep plenty of records and review them often.

This is not something that will just suddenly come right overnight, it will take a lot of checking and tweaking but you can get there. If possible try and get yourself referred to an actual DSN, don't get this confused with a practice nurse at your GP that "has an interest in diabetes". My experience is that the DSN's at my hospital offer better practical help than the specialist, nutritionist, other nurses and GP all combined.

I hope you are able to get this sorted, the links @catapillar posted are really good starting points until you get a DSN and specialist that can actually work with you. Those high/low rollercoasters can be a real pain to get off and annoyingly it takes time and patience to do it too. I really do think that to start with you need to get away from this micro dosing you are doing since that is really going to be complicating things for you and making it hard to see if your mealtime ratios are correct or not.

Best of luck and hope you manage to get some improvement soon.

A

 

[azure]

Hi all, thank you for your replies.

To answer some of the questions;

I do carb count to an extent, but the trouble I'm finding is that different carbs affect me in different ways, so a portion of potato will be different from the same amount of carb in rice for instance. This is causing a major headache.

I've been monitoring my sugars and injecting like a pump system would with 2 unit increments hourly to try and stop the over adjustment of insulin but what I'm finding is that from about 6am to 4pm insulin has a negligible effect, then at around 4 (ish) the whole lot seems to kick and I hypo. It has been suggested that it's stress causing this, but as I'm only at work during this period, that stress cannot be eliminated, I also get the same trend on the weekend where the same stress is not present :/

I haven't done a basal calculation for a while so I may revisit that one, thanks @Caterpillar for the links.

@mist at this point buddy any and every opinion is welcome, from the reception I'm getting from consultants I'm not a normal diabetic so I'm fully prepared for the fact that what I need to do may well be in non-conformity of the norm!

I don't think injecting 2 unit increments hourly is wise. Your basal should be holding you steady if it's set at the right amount (and basal needs can change quite frequently, so never assume it's right).

For the different meals affecting you differently depending on the carbs - yes, that's normal The trick is to find out what works for you eg 150g baked potato, meat plus veg needs X amounts of insulin injected 15 mins in adavance, 150g cooked pasta plus two tablespoons Bolognese sauce plus salad needs X units then a further Y units one hour after the start of the meal, etc etc.

Those are just examples. Find what works, weigh your carbs so that you're having the same amount (that keeps it simple - you can, of course, vary the amount if you want ) and 'know your meal responses'. Doing that makes control a lot easier.

But do do the basal test first as that needs to be right before you look at your meal doses.

 

[vans]

I would like to post my opinion but don't feel I am allowed to do so as I feel it will get removed for not conforming with the general consensus. Shame really, as I had some good advice for you after I went five years in a simailar situation.

Hope you get things sorted out man.

I think you should post it. Please don't feel you aren't allowed. Recent events have proved that to me

 

[vans]

@Lenwe
I'm pretty sure micro bolusing isn't helping
Sounds like it would help you to do some non carb tests to get your basal right and try to get on a dafne carb counting course
Best of luck.

 

[vans]

Here is the document I use to record basal

Fasting doesnt mean no eating, just no carbs so bacon & eggs is ok

 

[azure]

Here is the document I use to record basal

Fasting doesnt mean no eating, just no carbs so bacon & eggs is ok

@vans Protein like bacon and eggs can raise BS. Basal tests are best done with no food. You can do it segment by segment so only have to be hungry for a few hours at a time.

 

[vans]

Yes true. I haven't had this problem though and once again, this is what I was advised. One can only give one's own experience no?. I think as long as the bacon / eggs was noted it would be OK for determining basal. Obviously with discussion with dsn etc

 

[azure]

Link repeated here for anyone who wants it:

https://mysugr.com/basal-rate-testing/

.

 

[catapillar]

I've been monitoring my sugars and injecting like a pump system would with 2 unit increments hourly to try and stop the over adjustment of insulin

I don't think that does exactly mirror what a pump does and if the problem is you are rising from stress, as soon as the stress goes you levels will drop, but all that stacked insulin will just carry on working. I think you'd be better off doing a proper basal test during the working day to get your basal dose right. It is pretty tricky to give correction doses to combat stress rises, because the stress rise can disperse fairly rapidly, leaving the correction with no choice but to take you hypo.

The other option is to discuss a pump with your care team. Getting a pump set up would also require basal testin. But you could get the basal rate bespoked to be high enough to keep you in range at work, and then drop down 2-3hours before work is over so your avoiding hypos after work.

 

[TheBigNewt]

As stated by many others, doing hourly 2U injections of Novolog/Humulin is not a good idea IMO. Those injections add up eventually and you crash. It's not at all the same as a pump, which is maybe what you'll eventually need. What you're doing is known as "stacking" and is a well known ticket to hypoglycemia, (don't I know that!). It's good that you asked to be referred to a different endo though. Changing injection sites and changing needles is garbage when it comes to improved control. One final tip: Google the "glycemic index" of various carbs. It can vary immensely, and so can the effect on your BS (as you mentioned). Different types of potatoes can have higher/lower glycemic indices (white=high, sweet potatoe=lower). Rices abd fruits too (pineapple higher, strawberries lower). Check that out when you get a chance. Favor the lower glycemic carbs.

 

[azure]

Yes true. I haven't had this problem though and once again, this is what I was advised. One can only give one's own experience no?. I think as long as the bacon / eggs was noted it would be OK for determining basal. Obviously with discussion with dsn etc

Always do as your DSN advises as they know you best and your individual circumstances

In general basal testing is done without any food to give the most accurate result. We are all different and some people can eat eggs with only a tiny effect on their blood sugar whereas others need to bolus for them. It can also vary depending on when you eat them.

If what you're doing works for you, that's great

 

[Jaylee]

I believe Nidge isn't on insulin as he has LADA so the advice for them is different. He's trying to control his LADA by diet for now so is in a different situation..

A little nose about at Nidge's recent posts suggests he uses insulin.. (Basal/bolus.)