Type 1 diabetes & hormones

[SarahTisshaw]

Hi

I have had type 1 diabetes since age 19, I’m now 35, so have had it for quite a while, and I’ve never managed to have any kind of control over it. I’ve always been made to feel like it’s something I’m doing wrong even though I follow all advice given, lead an active lifestyle and enjoy eating healthily.

At my last appointment I had a female doctor for the first time ever. She mentioned that it could be my hormones. This is the first time ever anyone has mentioned this and to be honest I feel quite let down by the NHS for this, because after doing some research I discovered that oestrogen can make you insulin sensitive and progesterone can make you insulin resistant. After looking at the way the hormones go up and down throughout the month, if this is the case for me, no wonder I’ve never managed good control. But why have I never been told this?

Anyway, I know now, and I’m currently trying to figure out a regime which will allow me better control.

I’m currently trying to find others who also experience this problem and connect with them as right now I’m feeling so lonely in this. I don’t know many type 1s but the ones I do know seem to breeze through so easily without all these hormone problems affecting them like this.

If anyone else has this same problem or knows of any support groups for those with this problem could you please let me know.

Ps. I’m currently using Instagram as my diabetes diary so if anyone is on there and wants to connect in that way that would be great too, my username is @SarahTisshaw

Thanks

Sarah

 

[Bruce Stephens]

But why have I never been told this?

I've no idea. It's well known (I thought, anyway). Are you in an area where you're normally seen by a GP rather than by a hospital team (of DSNs and a consultant)? Even so it seems poor that you haven't been referred to the hospital team at least now and again (or that the hospital team didn't consider it).

Having said that, I couldn't see any mention of the issue on https://www.mytype1diabetes.nhs.uk/ or https://bertiediabetes.com/

DUK at least mention it: https://www.diabetes.org.uk/guide-to-diabetes/your-child-and-diabetes/periods

Perhaps I have a skewed idea of how common the issue is. I see it commonly mentioned on online forums, but then I perhaps don't see the many women who don't have any problem at all?

 

[rebrascora]

It is certainly well known and discussed here on the forum. I wasn't diagnosed until menopause and I am on HRT patches and you apply one every 3 or 4 days and sometimes forget or run short or try to make one last a week and I see slight fluctuation when I have let it go too long between applying patches, but I imagine monthly cycles will make a significant difference and I believe we have had members who have different pump settings for different times of the month. Really disappointing that you haven't had support with this from your health care professionals and have been made to feel like you were not being successful at managing your diabetes. It is those HCPs who should feel bad as they were letting you down. Of course I would not expect a GP or practice nurse to know much about Type 1 and it isn't their job, but if you have been treated at a specialist diabetes clinic, and you have struggled to maintain good management and it hasn't been mentioned then that is a failing on their part not yours.

Out of curiosity, which basal insulin do you use? Hoping it is a shorter acting one like Levemir which will allow you to adjust it for different times of the month or if you are on a pump, then you should be able to set different profiles. I imagine many women are on the pill and will therefore have less fluctuation, so that might explain why other Type 1 women haven't mentioned it, or maybe they simply didn't think to say anything. Hopefully you will soon find a new monthly routine which will help you improve your management.

 

[SarahTisshaw]

I've no idea. It's well known (I thought, anyway). Are you in an area where you're normally seen by a GP rather than by a hospital team (of DSNs and a consultant)? Even so it seems poor that you haven't been referred to the hospital team at least now and again (or that the hospital team didn't consider it).

Having said that, I couldn't see any mention of the issue on https://www.mytype1diabetes.nhs.uk/ or https://bertiediabetes.com/

DUK at least mention it: https://www.diabetes.org.uk/guide-to-diabetes/your-child-and-diabetes/periods

Perhaps I have a skewed idea of how common the issue is. I see it commonly mentioned on online forums, but then I perhaps don't see the many women who don't have any problem at all?

No, I’m seen by the hospital. I think the problem is that it’s so difficult to get an appointment and when you do the appointments are always running late and I always seem to get rushed through and not really listened to. It’s literally always been put down to that I’m doing something wrong. I always come out of there feeling 100x worse so over the years I just gave up going so much.

I received a letter from a diabetes charity letting me know about the libre a few years back but I literally had to fight to get it and change hospitals. Getting the libre was amazing and I really appreciate this piece of technology.

I recently found out that NICE approved the HCL and I really believe this will change things for me but obviously to get it you need to keep going to the hospital so I tried to get an appointment last year, I finally got to see the doctor in December, who said to me the HCL wasn’t available. She was the one that mentioned some of her patients are on different basal doses at different times of the month. This information conflicted with what I’d been told before, that you need to give you background time to “settle” when making changes to see its true effects. But then so much information I’m given when I go to the hospital is conflicting so I just went along with it anyway.

I did some more research on the HCL and found that it had been approved so I didn’t understand why I was being told that it wasn’t available. Luckily the doctor had emailed me some “basal testing advice” which to me is bizarre as how can I test my basal is correct when it keeps changing throughout the month, but anyway. I’m really glad she emailed me as then I had her email and could contact her between appointments and make sure I get to see the same doctor each time. I think this is another massive problem, the appointments, when you actually manage to get them, are always months apart and you never get to see the same person.

Anyway, I emailed the doctor about the HCL and she said that even though NICE have approved it there is no funding for it so I can’t get one.

I had an appointment to go back and see the doctor in April but that appointment was changed. I was very upset by this and emailed the doctor and said how important it was for me to see the same doctor each time for continuity of care and she very kindly added me to her list for an appointment in March.

Thank God that doctor emailed me, at least now I will finally have continuity of care and won’t be lost in the system as what always seems to happen.

Thanks so much for sending the links. Yes, this is also a problem, there is an absolute lack of information on type 1 and periods. At least there’s a little bit on the diabetes website although this is directed at parents, what about some information for the person it’s actually happening to?? I had heard that periods can effect blood sugars in the past but all I was asked was do you get hypos during your periods, and no I don’t! So it wasn’t spoken about anymore. From doing my own research and looking at the way the oestrogen and progesterone fluctuates through the cycle I’m now thinking this is the problem. I’ve worked out that I need to be on 4 different regimes throughout the month and it’s not just by 1 or 2 units. There is no information about this anywhere. I guess maybe it’s quite rare? This is why I’ve come on this forum to get advice on how I can connect with others who experience this. Do you have any advice on how I would find others in this situation also?

Ps, I’ve just read the info on diabetes.com and it’s kind of saying the same thing that I’ve been told, which for me is totally wrong information, it’s saying do you notice changes during the period. Mine changes constantly throughout the month, when the oestrogen rises, which is actually AFTER your period, this is when I get loads of hypos, I was always told this would be DURING the period if it was the hormones causing it. Anyway, I’ve attached my regime that I’ve come up with, let’s hope it works.

Sarah

 

[Inka]

Yes, my blood sugar is affected by my monthly cycle. In fact, so much so that I can even predict when my period is due. These monthly changes affect some women more than others, but I think they affect pretty much all women.

I have a pump so I use that but I only get two or three days of highs then a couple of days of lows so I either adjust my basal rate or just use corrections or eat extra.

What insulins do you take? Are you confident with carb counting and adjusting your own insulin?

 

[rebrascora]

It very much depends upon which basal insulin you use as to how much adjustment you can do. Levemir is very flexible. It is usually split into 2 doses, morning and night and you can adjust the split to suit your body. Some people find that an even split works for them but others need more during the day or occasionally more at night. For me, I need a lot in the morning and through the day but very little at night so I have a big dose in the morning as soon as I wake up and before I get out of bed and then a very small dose, usually just 3-4u or sometimes even none at night, if I have done a lot of physical activity for several days on the trot. I need to adjust my Levemir pretty often, sometimes day after day or in my case night after night to keep my basal needs balanced. Because Levemir is short acting, you can adjust it on a day to day basis and see more or less real time results, so it is really useful for managing monthly cycles. If you are on a longer acting basal then this level of frequent adjustment is not recommended because it can take 3 days for any changes to have full effect. I literally look at what my levels did yesterday on my Libre graph and decide from there and with consideration to what I did that day, make appropriate adjustment. I don't always get it right but I usually manage about 90+% Time in Range. It does however involve more thought and decision making and sometimes I get to the end of the day and it can be a bit of an educated guess.... as most diabetes dosing is anyway, but Levemir certainly gives you that flexibility. After a while you develop a bit of an intuition for tweaking it. I absolutely love Levemir as my basal need change a lot day to day with very little pattern to it.

 

[100cas]

@SarahTisshaw im also 35 and am impacted by my cycle so happy to connect. Since moving into a pump I actually have separate basal programmes throughout my cycle which keeps me steady. I have a very regularly cycle luckily so am able to change my basal and be pretty steady. When I was mid this was much harder and involved a fair few corrections in the days leading up to my period and lot of snacks during!

I’ll add you on Instagram

 

[Bruce Stephens]

Anyway, I emailed the doctor about the HCL and she said that even though NICE have approved it there is no funding for it so I can’t get one.

The rollout is just getting started so even if you satisfy the criteria it may be a while. (As for a pump it's worth checking the criteria and if you can, phrase your queries in a way that fits in with the criteria so it's obvious how you do qualify.)

1 Recommendations | Hybrid closed loop systems for managing blood glucose levels in type 1 diabetes | Guidance | NICE

www.nice.org.uk

There is no information about this anywhere.

There's a few pages in the book "Think Like a Pancreas" (one of those mentioned in https://forum.diabetes.org.uk/boards/threads/useful-links-for-people-new-to-diabetes.10406/ ).

I've honestly no idea why it's not mentioned much more often. My impression (which may well not be correct) is that it's rather common for women to need to make significant variations across the cycle, so it seems odd that that doesn't seem to be a fairly common thing to mention. Maybe because once you know, it's obvious and unmissable and pretty obvious what to do (a bit like responding to an illness, only a more predictable illness and one which sometimes sends you low rather than always high), so women just get on with it?

I guess maybe it’s quite rare?

Maybe. It was mentioned a few years ago that (in England) women were about twice as likely to be approved for a pump than men, and presumably this is part of the reason.

 

[PhoebeC]

As others have said I am impacted my by cycle.
I was on the implant in my arm but we worked out my cycles ranged on that from 10 days to 90 days so completely unpredictable and unmanageable.
Now I am on the mini pill so I know when it will be, when I stop taking it as other have said I get a bit of resistance and then random lows during my period days.
I am on the waiting list (pre op done) for sterilisation, the sooner I can just let my body do its own thing the better.

Track your cycle and your levels I used an app clue for my cycle it had good data and then compared to my libre.

The pump has been a game changer with this as my background insulin took days to alter and me to get right and then I’d be further along in my cycle now I can change it as needed on that day.

Don’t be rushed in your appointments. Write down what you what to cover / ask in advance and take a pen.
Is there a team of nurses you can contact? My hospital have a team of DSNs I can contact mine my email, or text and ask for a call whenever needed, I can normally get a call by the next if not same day.

 

[Bruce Stephens]

Here's another article which looks rather good (though I'm obviously not the target audience) https://beyondtype1.org/diabetes-menstrual-cycle/

 

[SimonP]

Out of interest how large are the sensitivity swings across a given cycle?

 

[PhoebeC]

Out of interest how large are the sensitivity swings across a given cycle?

Well at the start I have a few days higher, the days before I get my period again insulin resistance, but actual period days I need less insulin than my normal days and hypos are fast if happen.
The more control over when these times are the better for me but I can’t wait to be sterilised and not have extra hormones pumping into my system

 

[SimonP]

I realise you may not have actual numbers to hand, but if you do what sort of changes (percentage-wise increases or extra corrections, etc.) do you need to make to bolus and basal?

It does sound like a PITA, sorry!

 

[PhoebeC]

I realise you may not have actual numbers to hand, but if you do what sort of changes (percentage-wise increases or extra corrections, etc.) do you need to make to bolus and basal?

It does sound like a PITA, sorry!

Around 8% less on my period days for my basal during my period
My insulin works quicker for bolus

And my higher rate (start of cycle) is 5% more basal

None of my preset basals change more than 5 units, that includes rugby matches.

 

[Finn]

I have certainly noticed my monthly hormone fluctuations affect my insulin needs, so you're not alone.

The first clue was when I would go low for a day or two. I started predicting to my partner that I would be ovulating the next day and it would happen. I decided to track my insulin needs to spot the pattern.

I tracked my insulin needs for 6 cycles when on MDI and came up with this.



Blue is breakfast, red is lunch and yellow is dinner.
All are averages over the 6 cycles, but I didn't precisely count carbs for every single meal in those 6 cycles, so couldn't always collect the data.

100% is my average insulin need over the entire cycle for that meal.
Above 100% means I needed more insulin.
Below 100% means I needed less insulin.

Week 1, day 1 is the day my period starts. I usually need about 20% more insulin than my average then.
I usually ovulate in early Week 2. I need about 20% less insulin than my average, starting just before ovulation.
Insulin needs go up in Week 3, post-ovulation.
Insulin needs really ramp up in the few days before my period starts and I can need 40-50% more insulin than my average (I usually have a 25-27 day cycle, so my cycle often ends mid-Week 4, but can vary a bit).

On MDI, I had a relatively low insulin dose (5u morning, 3u night) and I didn't have a half-unit pen, so I didn't bother adjusting my basal, only my bolus.

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I'm on a pump now and have different profiles for different stages of my cycle.

I specifically chose the Tandem T:slim x2 because 6 different profiles can be set. I have one for each week of my cycle, plus a 'sick' profile (although I usually just turn on my Week 4 profile when I need extra insulin for whatever reason).

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I've read some people report needing less insulin during their period, and some saying they need more. So don't expect your pattern to be the same as mine or anyone else's.

Your body response to hormones however it responds, and you need the insulin you need.

The important part is that you've noticed a pattern in how your body reacts to insulin and you know you can adjust your doses to compensate.