Hello! Type 1 and where to start...

[Cheesecake]

Hello wise people,

I’ve been T1 for 15 years, on the old Omnipod (although I have a DASH I’m going to start once I’ve used up the old pods) I also have a Libre. Hba1c has recently been done and is 8% (which is 60 something I think I new numbers).

I am exhausted from hypos and banging around all over the place and I don’t know where to start to fix it. I have big issues with sites, some just don’t take and I end up high and often with low level ketones and feeling like rubbish. I’ve been using my torso as I found legs and arms needed different basal programmes, but I think my back needs a rest. Today I woke up 2.9, then my site failed (changed yesterday) and went up to 18 (no breakfast) with ketones of 0.4, down to 5.8 for lunch and then up to 16 again, now I’m 4.4. I end up using my pen, which seems pointless with the pump and is more stuff I have to carry about. I often have to fast as my levels are too high to eat, I’m borderline underweight and have gastroparesis which means I need to avoid gluten, dairy & high fat foods.

I’m throughly sick of it all. I’m scared to drive, scared to exercise and I’m a parent carer for my severely disabled son who needs constant supervision and I don’t feel I can look after him safely. Help!

 

[Docb]

Hi @Cheesecake and welcome to the forum. I am not going to make any suggestions because being a T2 I have no relevant experience, but I am sure some of out experienced T1's will be along before soon to help.

 

[Kaylz]

I'm going to tag @AJLang and hopefully she may be able to offer some advice as a pumper and gastroparesis sufferer

I'm afraid I've never been on a pump but there are loads here that have that may be able to offer their advice, I'll tag a few of the more active ones for you

@everydayupsanddowns @trophywench @Pumper_Sue those are 3 of the ones that are more often around and have great input on the forum
xx

 

[Inka]

@Cheesecake I sympathise. Bad sites are incredibly frustrating. I went through a run of them a few years ago and waking up high and not being able to eat for hours and feeling rubbish is awful.

I solved it by swapping to a different body area and using different cannulas for different areas. I use one area for a few months then swap to a new area eg use thighs then swap to tummy. I need different basal rates too.

I’m afraid I can’t advise on the gastroparesis but that must make it all harder.

 

[Cheesecake]

Thank you 🙂

Sorry, I was throughly p****d off with it all earlier and a bit ranty!

My team have suggested a ‘pump holiday’ in the past, but I’m not sure that would work. Maybe I need to be more adventurous with sites, I follow the areas quite strictly but I know of people putting pods in all sorts of places! Or I wondered about using a combination of pens and pump to try and avoid these site fails, or at least mitigate them. Feel like I’ve done the wrong thing going for another omnipod, but I like the tubeless system and I‘m a swimmer.

 

[Inka]

I took a pump holiday. I was worried but it was fine 🙂

I think a combination of pump and pen would be a good thing to try eg you could bolus by pen to see if it helped your sites last longer.

No problem with ranting. I was struggling not to swear when I replied to you because it’s so annoying having bad sites. It’s perfectly worthy of a rant.

 

[everydayupsanddowns]

Welcome to the forum @Cheesecake

Really sorry to hear about the struggles you are facing, and how fickle and annoying your diabetes is being. I think Gastroparesis is a particularly challenging complication to live with, as it can thoroughly mangle even the most carefully calculated and timed dose

A few thoughts that you could consider. This may be teaching you to suck eggs, so apologies for that!

1 Basal testing? When was the last time you did some fasting basal tests to check your profile(s) rather than just nudging an old pattern up a bit and down a bit every few months? https://forum.diabetes.org.uk/boards/threads/basal-testing-made-easy.19060/

2. Carbs? How many are you eating? Might it be worth experimenting with a slightly lower or moderate carb approach 130-150g a day or less? To see if something of the ‘law of small numbers’ might work for you - at least for some meals?

3. Skills refresher? Might it be worth doing one of the online courses like DAFNE or BERTIE or perhaps one of the well regarded books like ‘Think like a pancreas’ or ‘Pumping Insulin’

https://dafne.nhs.uk

www.bertieonline.org.uk

And do keep sharing, ranting and asking questions here.

T1 can be really infuriating and nonsensical at times, and it can really help to have the forum ‘hive mind’ to consult, or if nothing else... to sympathise!

 

[Cheesecake]

Thanks again 🙂

I’ve uploaded all my stats from my gadgets and will email my team tomorrow and ask what my levermir dose would be. I’m ready to chuck the pump in the bin so maybe a holiday would give me a break from the 3 day stress cycle. And it would e nice not to have to plan my showers!

Not done proper basal testing in a long time, especially during the day. I’ve been told I shouldn’t do it without at least a day clear of hypos beforehand, so I can’t see it’ll be possible until I’m more stable.

I did think about lowering carbs, although I probably should work on snacking first. But that’s definitely an area I could focus on.

I’m not sure what I can access online, I did DAFNE years ago, before I had a pump, but my new team don’t do it, they’ve got their own version. I’ll ask them when I email them tomorrow. I’m not sure what they’re doing with eduction, they wanted to do the pump change in person as they didn’t have technology to do it online, but I couldn’t go as my son is unable to return to school due to Covid, we were shielding and I‘m particularly keen to avoid being indoors with people! I’ll look for the book though, thank you, it can be hard to find good ones aimed at people with T1

 

[everydayupsanddowns]

I’m not sure what I can access online, I did DAFNE years ago, before I had a pump, but my new team don’t do it, they’ve got their own version. I’ll ask them when I email them tomorrow. I’m not sure what they’re doing with eduction, they wanted to do the pump change in person as they didn’t have technology to do it online, but I couldn’t go as my son is unable to return to school due to Covid, we were shielding and I‘m particularly keen to avoid being indoors with people! I’ll look for the book though, thank you, it can be hard to find good ones aimed at people with T1

The beauty of those links is that there are now online ‘e-learning’ versions which you can do independently from the comfort of your own home as a refresher 🙂

 

[Cheesecake]

Well, I had an omelette and salmon for dinner & levels were a nice flat line on my Libre under 7.7 all night

 

[helli]

Sorry to read about your problems @Cheesecake
I too am a pumper and recently changed from a tubey pump to a patch pump (not OmniPod but I think the logistics are similar). There are many things I like about the lack of tubes but I miss some of the flexibility of the tubey pump such a more sites available and the different types of cannula to help with problem sites. Is a different pump an option?
My other thought is around the Libre. As @everydayupsanddowns said "forgive me for teaching you to such eggs", but do you regularly check your Libre readings with finger pricks? I found the Libre was constantly out for me ... and not even a consistent number of mmol/l high or low. Sometimes, it just seems like a random number generator. This has improved since I stopped using the official LibreLink app and switched to one where I can calibrate with finger prick readings.

Good luck.

 

[Cheesecake]

I’m not sure I can change now, I’ve got my new Dash upstairs and I think I’m stuck with it for 4 years. It’s the only pump I’ve ever used so I don’t know where to start with other types, and a tube did feel like a big step backwards. Unfortunately I had to leave the education session about the different pumps options as there was an issue with my son, so only heard about Omnipod and Medtronic (?)

I also have the issues you’ve said with the Libre, I don’t trust it 100% and find it can be 2-3 mmol/l out when I check with a finger prick. But I do find the arrow helpful and pay more attention to that, and it helps with things like last night as it monitors like a basal test without having to wake up all the time. I use the reader the Libre came with, which app do you use? I’ve an old iPhone (5SE) and I think I need to upgrade to be able to use it with the Libre?

 

[Cheesecake]

So my team has gotten back to me... I need to go through all the numbers changes, but they’ve basically said I don’t eat enough carbs (ignoring that I‘ve said I’m underdosing due to worries about hypos) and need to increase my carb intake. I also need to change my basal overnight & increase my bolus & correctional. They’ve argued against the discrepancy with the Libre, when I’ve found the last couple of days much more stable using bloods. They've even said my hypos aren’t that bad (3% rather than 4% which is the threshold for concern) and I’m in target 47% of the time.

They've given me some things to change, but feel a bit abandoned if I’m honest.

 

[Inka]

Why do you feel abandoned? Do you mean they palmed you off a bit or didn’t take interest in you as an individual?

I do agree with the not going too low with carbs bit though. It looks ok initially then just messes things up IMO.

 

[Cheesecake]

Maybe it’s the Libre thing which has annoyed me, or generally not being told what I want to hear, with the carbs for example. Usually I don’t mind that diabetes is self managed, I like being in control & the freedom, just sometimes I think I’d like to have a break from it!

 

[AJLang]

Hi Cheesecake I've had Type 1 diabetes for almost 50 years and gastroparesis for over ten years. with a HBAIC hovering around the mid-6's since I got my pump six years ago. I was diagnosed with gastroparesis via a gastric emptying study that diagnosed severe gastroparesis.
There's a load I could write here based upon my experience but here are some pointers to begin with
a) Who told you that with gastroparesis you should have avoid gluten and dairy? Everything I've read has said low fibre and low fat. For me the low fibre option works particularly well - I have plenty of vegetables but they are usually well cooked, often in olive oil. I can manage some high fat food so, for example, in the morning I will have a large rice cake with angood spread of full-fat philadelphia cheese, a snack for lunch and a "normal" dinner for the evening. This may not work for everyone but it has for me, equally the recommendation for diabetic gastroparesis is six small snacks a day - personally I couldn't face eating that often.
b) Have they given you any medication to help with your gastroparesis e.g. erythromycin - although an antibiotic there is a good literature about it helping gastroparesis and certainly works for me, although it can lose its effectiveness for a while. I also have domperidone but that isn't recommended too much because there is risk of heart problems - I think it can literally make you drop dead but I've decided to take that chance, with the support of my consultant and GP, because otherwise I would permanently have my head down the loo being sick. Fortunately I've had ecg's that show my heart is ok (touch wood) but I don't think they're very keen on prescribing domperidone nowadays.
c) With regard to hypos - are these after you've eaten? Have you experimented with extending your bolus for a meal e.g. I extend my bolus for my evening meal over six hours so that it matches (as close as possible) the slow digestion of my food.
d) Personally I wouldn't suggest basal testing for somebody with gastroparesis on an empty stomach - because when you're eating with gastroparesis the food will last for several hours in your stomach and I use my basal to deal with that. I know that if I basal on an empty stomach it will suggest that I need much less basal than I actually do. However I do look at trends in my BG levels when I am eating and when there are changes will adapt the basal rate accordingly.
e) I use a combination of freestyle Libre (to identify trends) and finger prick testing for corrections. As the digestion of food is so erratic with gastroparesis some days I find that I need to do several micro dose corrections to keep my levels at the right level but of course making sure they don't stack up to create hypos.
f) I do have some hypos but touch wood they are rarely under 3.5 and average less than one a day even with a HBA1C of 6.5 - although sometimes they can go pear shaped in the early hours of the morning and I will need 45 grammes of carbs (sugary Coke) to keep me above 3.5 and get me back up to the 6's.
g) I have had to work nearly all of this out myself because I've found that a lot of health care professionals, even those who deal specifically with diabetic gastroparesis don't understand the micro detail. But my diabetic team have been brilliant with supporting me with the pump (Accu-check combo), Libre and test strips although it has sometimes in the past been a bit of a struggle getting these.
h) I couldn't manage gastroparesis without my pump - before I got it it wasn't unusual after the gastroparesis started to go up to high 20's low 30's fortunately not too often but often enough. Now I don't like it if I go above 9 and try to stay between 5.2 and 6.9 - not always possible but that is my goal.
I hope this helps, but please don't hesitate to ask any questions. PS the better your BG levels the easier (not easy) to manage your gastroparesis - and I do have a lot of flare ups where I think it's getti )ng worse, but fortunately they are just flare up and so far (touch wood) hasn't been progressive. PPS I am VERY overweight despite the gastroparesis but not helped by a lack of exercise due to non-diabetes related conditions and liking wine (a lot 🙂)

 

[AJLang]

Maybe it’s the Libre thing which has annoyed me, or generally not being told what I want to hear, with the carbs for example. Usually I don’t mind that diabetes is self managed, I like being in control & the freedom, just sometimes I think I’d like to have a break from it!

I just read this after I'd finished typing - big hugs but I'd really like to say that especially with diabetes and gastroparesis you will never get a break from it - but you can still have a great life but yes I do scream, swear, moan etc about it quite a lot but in many ways it's the least of my worries...and I'm flipping determined to be getting my 50, 60, 70 and possibly even 80 year diabetes medals despite having been diabetic since I was 2 years old.

 

[Inka]

A break would be wonderful! Like a holiday allowance from a job. Type 1 is certainly a full-time job.

Hopefully a few tweaks with your doses will improve things. I know how frustrating it is when things don’t work out.

FWIW, my pump holiday made me appreciate my pump more (because I could change the basal as needed with my pump, and because I seemed to spend the whole day injecting), but it was good mentally to have a short break.

 

[Cheesecake]

Thank you both, it really helps to chat to people who know 🙂

@AJLang thank you so much for all that, I think you’re the first person I’ve spoken to with both conditions!

A) It was the gastro consultant who diagnosed me (after the DGE test) he said either gluten free, dairy free or FODMAP. I’d already done FODMAP as I thought my gastroparesis symptoms were IBS. My diabetes dietician has said about the 6 meals but like you I can’t face eating so much all the time. I’ve not been told low fibre before and have discovered low fat (bye bye fry ups!) myself.

B) I’ve not had erythromycin, again no one has mentioned it, but I do have meteclopramide and ondansetron. To be fair I have stopped taking the metoclopramide as I got scared about the heart issues, but have tried to do it the last couple of days and definitely think it’s helping.

C) I have tried with extended boluses, but not for over 2 hours, when my scan showed 4 hours, and usually with the traditional foods like pizza, maybe I should have a try with this.

How do you drink wine?! I was told alcohol also effects gastroparesis and have reluctantly given up wine.... the odd G&T sneaks in though!

 

[AJLang]

Your meteclopramide and ondansetron are probably alternatives to what I’m on. I couldn’t cope with meteclopramide at all (really bad plumbing issues) but it didn’t affect my heart. But everyone is affected differently. You have to make your own risk decisions in life. I experiemented with how much to extend my bolus over time. Low fibre helps the food to digest more easily so less full and means reduced chance of hypos after meals.
i guess I’m lucky that alcohol doesn’t affect my gastroparesis at all but I wouldn’t necessarily recommend it because too much isn’t meant to be good for you generally...but it doesn’t stop me and my last kidney and liver blood test results were excellent. But I guess that I should cut down to lose some weight 🙂