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Type 1.5 Menstruation, insomnia and insulin

DaftThoughts

DaftThoughts

Well-Known Member
Messages
397
Location
Netherlands
Type of diabetes
LADA
Treatment type
Insulin
I've always had issues with menstruation since my mid-teens. Used to be so bad I missed 4 days of school a month regularly because of the severity of my symptoms. Tried tons of different things like painkillers, hormonal birth control etc. but nothing really worked well for me. (The pill was a nightmare.)

As of 1.5 years ago I got the Implanon hormonal birth control (plastic rod in my upper arm) and everything leveled out dramatically. I had 2 week periods but they were so light I could barely even tell anything was happening. No excessive moodswings, no longer period induced insomnia.

And then I started insulin. FML. First period I was on a full blown 4 week bleeding spree. Nothing as unnoticeable as before, but just regular hygiene product changes, bleeding through my pants etc. It feels like the insulin undid all the positive effects of the Implanon and put me back at my 15 year old self. I didn't sleep a wink as I started again a few days ago (on schedule for my cycle at least). Every tiny sound sets me off into a rage and I can't fall asleep, meaning my values are all over the place as the stress and lack of sleep are messing me up. I'm dealing with irrational, severe mood swings that make me kick my bicycle to the curb and punch it because the wind is just annoying me. It's horrible. I don't even want to talk to anyone out of fear I'll become actually aggressive over nothing.

Literally the only change in my life since January, when this all started, is the rapid acting insulin. I know it's a hormone, and I know it can influence the menstrual cycle, but this is pretty extreme. Has anyone else gone through this? Has hormonal birth control conflicted with the insulin regime you're on? Is there anything I can do about it?

I haven't seen my GP yet but I'm 99.999% sure he's going to suggest removal of the Implanon and to try an alternative. An alternative isn't viable, the Implanon was my last resort short from taking my reproductive organs out of my body as I'd gone through everything else already. (Wouldn't be opposed to that, don't want kids or bother with menstruation ever again, but you know how doctors are.)

Not really sure what to do, I might call up my DSN first and see if this is something that she's familiar with. Maybe then see the GP. All I know is that my body is really driving me up the wall with everything that's wrong with me and it's becoming hard not giving in to the frustration and despair. It's broken in so many ways and I'm not even 30 yet. (Might be my hormones talking right now...)
 
@DaftThoughts It's really interesting to hear you say that. I'm T1, not 1.5, but I am on the pill version of the implant (progesterone only, no combined pill for me because of migraines+aura), with the idea that it would help my periods from hell - confine me to bed for days, hopelessly irregular, and have left me with a severe iron deficiency. They were not great before my T1 diagnosis at 16, but are now much, much worse. The theory was that the pill would help and it just... hasn't. Still irregular as anything, still cripplingly painful, mood swings worse than ever before, and very, very unstable numbers (seriously, went from 26 to 3 in an hour yesterday). Yesterday, I very nearly strangled my flatmate because he had left a pan on the side. I wanted to scream.

I don't really have anything helpful to suggest, other than bed and a hot water bottle, possibly some yoga, just because it takes my mind off it for a bit, but obviously that isn't an option on the worst days.

I wonder if any collective study has been done on insulin and birth control? Because you can as good as guarantee there weren't any diabetics in the original clinical trials. Wouldn't want to mess up their pretty numbers now, would we?

Sending hugs.
 
Sorry @DaftThoughts

This post is more addressed to @EllsKBells than to you, and I apologise for the derailment.

When I was in my teens, my periods were seriously wacky. 3 weeks of flooding. Hated it. Went to a doc, The Pill caused MASSIVE weight gain and no improvement, so got referred, and the endocrinologist (I was 15, and can't really remember his job title) prescribed me progesterone tablets. They gave me PMS from hell. All the time. I stood in the kitchen drying up a carving knife with fantasies of stabbing my mother in the back because she was breathing in my vicinity. Not killing her took all my will power. I hated the world. It was quite terrifying. So I cut the dose in half. And the symptoms disappeared. And my periods stopped altogether. Only saw the endo once after that, and they seemed quite happy with the situation. But I didn't have periods for 20+ years. I stopped filling the prescription after a year or so, when I realised that whether I took the tablets or not, my periods didn't happen.

So I guess what I am saying is that some people get some pretty severe reactions to synthetic progesterone, and be careful. If it doesn't suit you, then go back and ask for something else, or weigh the pros and cons very carefully. I should have done, but it hard to do that when you are 15 and your parents worship Doctors as Gods. But I wonder sometimes how many of my other hormone issues were caused by that excessive dose of progesterone, way back then? I have since been diagnosed with PCOS and a prolactinoma (benign tumour of the pituitry gland, pumping out excess prolactin), so my endocrine system is well and truly wrecked.

It is one of the reasons that I am dedicated (as a type 2) to avoiding insulin for as long as humanly possible. I suspect that my body doesn't like supplemental hormones at all!

@DaftThoughts I guess the rage you describe in your OP sounds like the rage I got on the progesterone. Different hormone, same reaction. Difference is that all I had to do was stop taking the dratted tablet, you are in a much worse situation, because you need that insulin.

Could you persuade your doc to prescribe a different type of insulin? even one of the animal insulins? to see if a different one helped the situation. We have had a number of posters who have found that changing to a different type of insulin has made a big difference to their control and reactions.

Edited to add: and yes, there was huge insomnia, during The Rage.
 
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Thanks for the input guys.

It doesn't seem to matter how few carbs I eat in the morning, whether it's 10 or 40 grams or just a cup of coffee or tea, my body just makes drastic jumps from 6.x to over 13 in under 3 hours. It doesn't matter if I bolus for what I eat or double bolus for what I eat, the results are consistently the same. :(

I finally managed to get 10 hours of sleep in after pushing myself not to nap and stay up past 9pm, so I woke up feeling good with a reasonable fasting value, but that made no difference (it did last time I was having insomnia). I'm fairly sure this is menstrual and birth control related. My period is going on day 6 now, though it seems to have slowed down some, I'm not holding my breath for it going away soon.

My DSN is hopefully calling me back this afternoon. If my birth control is interfering with this and leading to these readings, I'm strongly considering having it removed. I'd rather deal with 4-5 days of painful menstruation than 2-4 weeks of this hell.
Not sure what other types of insulin would be available to me, but I'm asking that too.
 
DSN just called me back. She couldn't help me because the majority of insulin dependent patients at my GP's clinic are elderly and don't deal with menstruation or birth control anymore, so they don't have any information on whether or not birth control and menstruation can severely mess with insulin dependent diabetes. Makes sense!

She referred me to the specialist at the hospital who has the info, but their phone hours are on workdays between 8:30 and 11:30 in the morning (and it's 12:45pm right now) which means I'm sitting this out until Monday at least.

Sucks hard, so I'm going to do my best to deal with this over the next couple of days. I seem to level out after the morning hours and breakfast which is good at least. I can low carb for breakfast so maybe it's eggs and full fat greek yogurt for the weekend, and then making the best choices possible for lunch and dinner. Might ditch the coffee and stick to big pots of tea as well, just to be sure the caffeine isn't affecting it too much either. And of course frequent testing after meals and correction doses.

I keep going from extremely frustrated and ready to give up and cry, to ready to kick some ass and beat this thing back to the dark pit of horrible it came from lol.
 
Just checking in, had a panic attack last night (from all the fussing and crying no doubt) and didn't get to sleep until 6am. Slept until 11 or noon and my control has been pretty dang good so far. Fingers crossed that the worst has passed.

I'm really pleased with this line all things considered!

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Just an update, I spoke to my GP this morning. He agreed that the Implanon is plausibly creating a conflict with the insulin. I spent over 4 months struggling with zero improvement. I'm scheduled to have it removed on the 30th. Hopefully things will look up after this! My levels have been very difficult to control lately due to all the stress I'm having, part of the stress coming from this, so fingers crossed. :)
 
Implanon has been removed as of 2 hours ago!

My last period ended end of April, and my most recent one started back up two weeks ago - it's a literal bloody nightmare but I'm hopeful that it will stop very quickly and my cycle will go back to normal.
 
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