Testing for site issues Vs. potential hormonal needs.

[SaffyreSkye]

Hello all,

First of all, I would like to thank you all for taking the time to read my first proper post (apart from my introduction). Please do bear with me, as this post is a bit of a long one.

I am the mother of a type 1 diabetic daughter. She is 12 years old and was diagnosed back in 2009. We switched to pump therapy in June, as she was experiencing severe nighttime hypoglycemic events (including seizures and readings of 1.7mmol and below back in March). This absolutely petrified me and still puts fear into me to this day.

My daughter started her periods 2 years ago in January and we find that she definitely does run higher during this time (we swear by our trusty temp basals!). However, at the behest of her diabetes team, I have contacted our GP as the team state that it is completely abnormal for a 12-year-old to have irregular periods (some months they are happening twice, sometimes they are normal, sometimes she needs a temp basal, sometimes she doesn't. etc).

I personally don't believe this is abnormal after less than 2 years of her having started her periods (menarche is still a possibility) and nor does her GP, but I AM obviously concerned enough about the effect they are having on her glucose levels to go ahead with the hormone tests and scans that her team have requested.

As her periods are causing instability with her glucose levels and some months are multiple period months, sometimes we need temp basals and sometimes we don't, I would like a bit of information about this (or potential suggestions).

For instance, my daughter had great readings yesterday but after her set fell out during the morning (we caught it very quickly, thankfully, and her glucose levels were 4.1mmol), we had to do a full set change. We did all of this and went about our day. I took her into town so she could meet her friend and as it was a hot day, suspected she may run a little higher, as she tends to. All evening and right up until now, I am having to run temp basals and perform corrections. Her glucose levels haven't been horrendously high, but at 8-9 without budging much, they've been high enough for me to be concerned.

What I want to ask is this. I am unsure if her body is telling me another period is potentially imminent, or if the set is in a bad site. I would like to know if when the pump asks me to correct again, could I do this via pen (but let it run through the pump while temporarily disconnected) and then re-check to see if the site is compromised? I don't want to change a set out and waste it if it's unnecessary, but I've never tried this before and don't want to jump in doing something new without the thoughts or opinions of others who may have potentially experienced similar issues. I've only ever had to inject when her glucose levels have been higher than this, owing to a set that has fallen out (thankfully, this isn't too much of a common occurrence).

As her glucose levels are so unstable due to her changing hormonal needs, the pump transition hasn't been as smooth as it could have been, but we are most certainly seeing how beneficial it will be once we've ironed everything out. We are using the Medtronic 640g without CGM, and using the Mio 6mm soft cannula sets.

If you made it this far, thank you once again for reading my post and if you can provide any guidance or suggestions, please do feel free to do so, it would be much appreciated.

 

[SaffyreSkye]

Thank you for your response, Contralto.

When her next period arrives, I am taking her to the hospital for a blood test so they can perform the hormone checks, and our GP has put her down for an ultrasound scan to check everything looks in order. Her periods do seem on the heavier side to me but mine were back around that time too, along with the irregularities so until the tests come through, it will be a toughie.

I had no idea back when she was diagnosed at 4 that hormones, later on, would cause such a headache! Her team haven't imparted too much information either (just 'Run a basal!') so I've been having to read up a lot on how to manage things.

I will also update this thread if and when I have more news about the hormone checks, as this could also be relevant for others who are at this stage of life and experiencing similar issues.

 

[SaffyreSkye]

I've been kind of shocked recently at how early some girls are showing up with PCOS, Hashimoto's and liver problems and then there are worse things like lupus. In addition to an endocrinologist, maybe she could see a rheumatologist? Has she seen a gynecologist yet?

She hasn't seen a gynaecologist yet as the GP said due to her age, he would like her hormone and scan results first. He suspects normal menarche but I told him I'd like to be certain as the effect on her glucose levels is so random.

 

[Jaylee]

Hi @SaffyreSkye ,

Tagging in @catapillar & @Juicyj for a little advice..

Backing away from the subject myself now. As I'm a guy...

Hope this helps?!

 

[catapillar]

I think us TBR or apply a pmt basal profile is probably the best advice you are going to get.

Certainly pre pump I would increase my levemir dosage for a few days when I worked out I was ovulating and then for 5-7 days before coming on, because for those sections of my cycle I was more insulin resistant. Of course, as soon as I came on all the hormones would change and I would drop through the floor and need to make sure the levemir was dialled back accordingly. I wasn't regular enough to pre empt that well enough so first day of my period caused a few pretty severe hypos.

The fact is, how hormone through a cycle impact on insulin sensitivity and insulin requirements are going to be different for every diabetic, some won't notice any impact and some will really fight with it. It's not unusual to notice increased insulin resistance immediately preceding a period, but apparently it's quite unusual to be able to know when you are ovulating from changes in insulin requirements. It's way too individual for you to expect any further advice from your DSN. And I doubt anyone's cycle is going to be that predictable that you can rely on it to be increasing basal rates like clock work and not inadvertently causing hypos - you just have to be flexible, keep an eye on blood sugar results and increase with a TBR or switch to a higher basal profile when necessary.

The hormone testing might actually help you to confirm that changes in insulin requirements do correlate to changes in hormones - if the hormone testing will map out what hormones look like through the month. The other thing I looked at to try and plan when I might need more insulin according to my cycle was the app Natural-cycles - it's really a contraceptive app that tells you when you are and aren't fertile my tracking your period and regular temperature monitoring, but essentially that's telling you when you are ovulating (because obviously that's the time when you are fertile) and when you are going to come on. Although I've not tested that yet because a change in diet caused 12 month with no periods and very irregular periods for the last 6months and I've not noticed such an insulin requirement impact from my cycle since it started again because I don't think the hormonal cycle has really established itself yet.

 

[SaffyreSkye]

I think us TBR or apply a pmt basal profile is probably the best advice you are going to get.

Certainly pre pump I would increase my levemir dosage for a few days when I worked out I was ovulating and then for 5-7 days before coming on, because for those sections of my cycle I was more insulin resistant. Of course, as soon as I came on all the hormones would change and I would drop through the floor and need to make sure the levemir was dialled back accordingly. I wasn't regular enough to pre empt that well enough so first day of my period caused a few pretty severe hypos.

The fact is, how hormone through a cycle impact on insulin sensitivity and insulin requirements are going to be different for every diabetic, some won't notice any impact and some will really fight with it. It's not unusual to notice increased insulin resistance immediately preceding a period, but apparently it's quite unusual to be able to know when you are ovulating from changes in insulin requirements. It's way too individual for you to expect any further advice from your DSN. And I doubt anyone's cycle is going to be that predictable that you can rely on it to be increasing basal rates like clock work and not inadvertently causing hypos - you just have to be flexible, keep an eye on blood sugar results and increase with a TBR or switch to a higher basal profile when necessary.

The hormone testing might actually help you to confirm that changes in insulin requirements do correlate to changes in hormones - if the hormone testing will map out what hormones look like through the month. The other thing I looked at to try and plan when I might need more insulin according to my cycle was the app Natural-cycles - it's really a contraceptive app that tells you when you are and aren't fertile my tracking your period and regular temperature monitoring, but essentially that's telling you when you are ovulating (because obviously that's the time when you are fertile) and when you are going to come on. Although I've not tested that yet because a change in diet caused 12 month with no periods and very irregular periods for the last 6months and I've not noticed such an insulin requirement impact from my cycle since it started again because I don't think the hormonal cycle has really established itself yet.

Hello Catapillar,

Thank you so much for your in-depth response. I do understand that all diabetes cases are different and that the needs as such are different. It's just understandably a very tricky thing to deal with when I've been given literally no information in regards to potential effects. Before her periods began, I had no idea that the hormones would cause an issue so it's been a definite eye-opener. I was pretty much given a welcome pack back in 2009 and told what her diagnosis was so I've been reading up from trusted sources and checking in with her team as I've needed to (along with her usual check-ups).

I have read all of what you wrote and will definitely check out the app, as I have been keeping a period diary to help us see if there is a definitive pattern we can see, but having an app too would be fantastic. I will update when I have more information too, in regards to the hormonal profiles and such.

Thank you once again for your tips, they are very much appreciated.

 

[Juicyj]

Hey @SaffyreSke I also have issues with monthly periods too.. However it's not the same each month, generally I can increase my insulin by 10% but can go up to 20% with it, I only know when it hits and how my body reacts to the insulin, then it disappears a few days after I start, as I'm a regular 28 day cycle gal it's straight forward however for a youngster settling in I can imagine this is a pain, I try to keep ahead of each one by knowing the date and diarising it and it may help your daughter to just keep a diary so you can start to see the pattern developing and also record how much was required on each one. I also use the 640g so it's easy to add a new basal pattern but to be honest I still have to correct, I also didn't know when I was diagnosed what a pain it would be but it does get easier as you prepare mentally to cope with it.

 

[SaffyreSkye]

Hey @SaffyreSke I also have issues with monthly periods too.. However it's not the same each month, generally I can increase my insulin by 10% but can go up to 20% with it, I only know when it hits and how my body reacts to the insulin, then it disappears a few days after I start, as I'm a regular 28 day cycle gal it's straight forward however for a youngster settling in I can imagine this is a pain, I try to keep ahead of each one by knowing the date and diarising it and it may help your daughter to just keep a diary so you can start to see the pattern developing and also record how much was required on each one. I also use the 640g so it's easy to add a new basal pattern but to be honest I still have to correct, I also didn't know who I was diagnosed what a pain it would be but it does get easier as you prepare mentally to cope with it.

Hello JuicyJ,

Thank you so much for your response. We've found her sweet spot with basals tends to be around 130% on temps so we've been sticking with that for no longer than 4 hours at each stretch. We've been keeping diaries including her start dates, end dates, temp basals that were needed etc. and can check at a glance what is happening throughout the month.

I do worry a lot about her, but I do also know that when we do figure out what is going on and get settled into the routine of changing things about, it will be much less of a headache, and become part of her routine. Her HBA1C levels have improved dramatically with her pump, and it is an absolute blessing for us with how many options we have at our disposal to help with specific things. The temps are so useful.

I asked her team about setting a secondary basal pattern and one said it's too risky but another one I asked said it's a great benefit as I monitor her regularly anyway so will know when it needs to be changed back. I shall discuss setting up another basal pattern with her DSN. Thank you once again for your reply, I was a bit nervous about posting at first but it's a relief to be able to feel there is a light at the end of this particular tunnel

 

[Juicyj]

Sounds a bit odd being told not to add another temp basal pattern - I would definitely add one in, no harm in doing so. Also in regards to infusion sets I also used the mio but as it's spring loaded sometimes it didn't quite go in so would spend all day coming down off a high, I now use the sure t and they are much easier to insert rarely have an issue now - might be worth trying this if you have issues with the mio.

 

[SaffyreSkye]

Thank you so much for the recommendations. I am due to see her team again for a final pump review in October so I'll run these things by them then. We definitely do have some issues with the Mio sets and we're having to use medical tape to make sure they stay in place or they fall out much easier. We keep the connectors clear but with the tapes, they do stay put. We've tried alcohol swabs, letting the area dry and using non-moisturising good quality deodorants but the sites still occasionally fall out unless they're 'taped' down around the edges. The team told us the medical tape and process we use is fine but obviously, it's not ideal. I will definitely bring this up with them, thank you once again.

 

[SaffyreSkye]

paper tape and fabric tapes cause fewer allergies than atex tapes over time if you have to use tape

Hello Contralto,

It is paper medical tape that we are using. The 3M micropore paper tape. It leaves barely any residue too as a previous tape we had left annoying residue and was itchy so we switched it out quickly. We swear by it

 

[bobcurly]

I have an 11 year old daughter and havent hit hormones yet but we couldnt rely on mio sets at all. They kink too frequently and we often resorted to pens as we could never be sure whether it was working or not. Ask to try the sure t sets as we have not had a single issue since changing 5 months ago. You can tape the needle in as the connector is elsewhere. Easy enough for 11y old to do on her own as no inserter.

 

[SaffyreSkye]

I have an 11 year old daughter and havent hit hormones yet but we couldnt rely on mio sets at all. They kink too frequently and we often resorted to pens as we could never be sure whether it was working or not. Ask to try the sure t sets as we have not had a single issue since changing 5 months ago. You can tape the needle in as the connector is elsewhere. Easy enough for 11y old to do on her own as no inserter.

Definitely going to mention the Sure T sets to the DSN team. My daughter does struggle with the Mio insertion too so I usually help her as if she does them by herself, she usually flinches a little and they come out so have to be switched out. Thank you for the recommendation