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T1, honeymoon, Pregnant, potential RH, off insulin....where to begin...?!

Erin85

Well-Known Member
Messages
116
Type of diabetes
Type 1
Treatment type
Insulin
Hello,

There's so much going on here, I didn't even know where to post! I have had a really rough couple of weeks and have decided it's time to share with my Diabetes family (I also figure you guys might have a better idea of what's going on than my DSN team, who seem stumped).

So. I was diagnosed t1 31/12/14 (and tested positive for antibodies so definitely t1). I've been honeymooning ever since, sometimes needing to reduce my insulin drastically before needing to increase again. I am also 17w6 (4months) pregnant.

I was told that the pregnancy will likely pull me out of my honeymoon period. No issues there. I started experiencing more and more hypo's and at lower levels. I started reducing my insulin in line with this. I'm now at the point that I have been free of ALL insulin for 2 and a half weeks (with the exception of a half unit fast acting last night and this morning, which I'll come onto). So, having only my own natural insulin onboard, I was still experiencing hypo's. I don't even know how this is physically possible.. And I'm not talking about a 3.4 or 3.0, but as low as 2.7, and feeling the effects of it? Both my consultant and DSN were on holiday, so I spoke to a diff nurse who advised me to eat smaller meals, more often, which were low GI. This I did. I was starving (and grumpy) and lasted about 3 days. Still experienced a hypo or 2. Then one night thought what's the point, and had a piece of chocolate cake - went to bed a bit high and woke up hypo. So there doesn't seem to be any rhyme nor reason to it. Met with my team last week, when they returned, and my DSN has said that a level of 2.7 is normal (I don't believe this for a second. Maybe 3.3 or something, but is 2.8 not the cut-off for potentially falling unconscious? That can't be normal?!). She also said that they think I might have Reactive Hypoglycaemia (which I don't believe either. I had read a bit about RH on here about a year ago and it was my understanding that every time someone with RH had a lot of carbs, they would hypo [please don't quote me on this, this is just my understanding and could be completely wrong!], which hasn't always been the case for me at all. So they've asked me to increase my carb intake to 150-200g a day, keeping in mind that I'm pregnant and need the carbs for baby's development, to even out my carbs throughout the day, and to go low GI. The dietician suggested houmous spread on a pitta stuffed with grated carrot....mmmmmmmm.

So I have been doing my darnest. I am still experiencing spikes after breakfast and dinner, but this stabilises within a few hours. It's really stressing me out. I'm worried about what the high sugars are doing to my baby, but know that if I inject, I will hypo!! Last night, I cracked and had a twix, and spent the next few hours feeling like a terrible mum I did take a half unit of fast acting insulin to compensate, and tried a half unit this morning for breakfast.

I don't even know what I'm looking for here. My husband and I have tried to figure it all out. Couldn't be dodgy insulin, as haven't been taking any. It's not the meter (got a new one to check, and now on Libre - I am my Diabetes team's guinea pig). Potentially my dodgy, honeymooning pancreas overproducing? Still don't think it's RH. Just so frustrated that I can't get my levels to stabilise, bored with brown pasta, and craving a chocolate penguin!!!!

Sorry for the rant, and thanks for reading.

Hungry, moody Erin x
 

Firstly, let me state loud and clear that I am neither T1, nor a dietetic specialist/nutritionist. In making comment on your post, I'm trying to apply what I understand you are saying, and overview my understanding of your various conditions and potential conditions. I'd also state that your pregnancy clearly must be protected by anything to elect to do, so please, whatever you do, don't take any major actions based solely on anything I post!

My simple take on what you have written would be to suggest that you do seem to be in honeymoon, but you now have two hormone "jokers" in the pack. You have your pregnancy, which can lead to all manner of diabetic variances on a day to day basis, on its own, and also your pancreas may, it seems, sometimes throw out quite a lot of insulin, as opposed to just a little bit.

I have in my head an analogy of a car running with blocked fuel jets. It struggles and struggles to get any power, then once the jet clears itself, your foot is so hard on the accelerator, you kangaroo forward in an undignified manner. Do you see what I mean? Does it seem like that might fit?

Clearly your problem is very much the unpredictable nature of your pancreatic performance, plus your pregnancy hormone fluctuations.

I would love to be able to offer you something more helpful, but I do fear your situation is pretty niche and may be beyond the personal experience of most, if not all our esteemed posters.

I'd say, it's a time to be keeping close contact with your diabetes team.
 
Hey @Erin85 Congratulations on your pregnancy.

What a puzzle, I have picked this info up from a pump site but it explains the insulin requirements in particular, to the 1st trimester which would explain your hypos:
  • Pre-conception and 1st trimester
    Maintaining the best possible glucose control before and at the start of pregnancy can reduce the risk of complications for the baby. However, it is also a time of increased risk of hypoglycaemia for the mother, so insulin doses may drop later in the first trimester.
  • 2nd trimester
    At this point, the placenta is fully developed and hormone levels begin to rise steadily, causing insulin requirements to increase as well. In particular the pre-meal boluses may have to be increased to keep tight glucose control after meals.
  • 3rd trimester
    Because insulin is absorbed more slowly and can be less effective at lowering glucose in late pregnancy, you may need to give larger doses even earlier, up to 30 to 40 minutes before eating.Maintaining tight glucose control throughout the last trimester can help to enhance the baby’s final organ development, maintain a normal birth-weight and reduce the risk of hypoglycaemia for your newborn baby.
As you are coming into your 2nd trimester then this could change fairly soon, Testing is vital to keep a watch on things. I personally would ask to see an endocrinologist, as i'd need to have a better idea of what is going on, also you really don't want to be worrying, are you ok to call your team to see if you can get an apt as this may put your mind at rest.
 
The only thing I can suggest is keeping a very detailed food & blood diary to help build a picture up for the health professionals..

.. But you knew that anyway.
 
Hi,

I pop up like a bad smell every time anyone mentions RH , but I have zero experience with T1 or pregnancy (in the latter you are a braver woman than I, lol).

But re RH, it really doesn't take many carbs for me. It is certainly isn't a carb binge needed to trigger RH. I had a fun time back in January with a mere 2 choc digestives. Went from 5s up to 10+ then back down to the 3s, I think, Felt dreadful. And it isn't the blood glucose swings that have the effect, it is more the speed of the rises and falls, plus the way you end up lower, so every time you eat to try to stop what is happening, you just step downwards each time (if you eat carbs) So I guess it is totally down to personal sensitivity to carbs, and your personal hormone cocktail - and let's face it, hormones rule the roost during pregnancy. But they also have a huge effect on RH.

Not going to make any suggestions about diet - totally unable to make suggestions when you are pregnant - but don't discount RH being a factor, cos carb tolerances vary hugely.
 

Hi, just a thought, have you a 1/2 unit pen, an ECHO pen, as this helps with my Insulin and food intake because I am sensitive, so 1/2 unit more, or less, has been really helpful.
Take care Erin I hope you can fond out if there is something else going on, RRB x
ps when I was pregnant, at times my Insulin dose was minimal, but not honeymooning, 11 years then. x
 
Thanks for your comment @AndBreathe - your analogy of the car is not unlike the analogy my husband and I use when we discuss possibilities of what's going on and makes perfect sense!

Thank you for the info @Juicyj ! We were expecting my insulin needs to start rising at around 12-14 weeks when the placenta started working its magic, but still waiting (I will be 18 weeks tomorrow). I am testing constantly at the moment, especially during the night as I worry about going to bed with high bg levels, and am considering starting insulin again for breakfast and dinner, and eating mid-morning and supper time to stop hypo's (we did try this for a while with breakfast in my 1st trimester, but stopped when I was having hypos 13hrs later after having injected half an hour before breakfast, eating breakfast, a snack and lunch). I think you could be onto something with requesting an endocrinologist appt.

Hey @Jaylee , I wish I knew how to upload a pic of my diary for you - it has pretty much every bg test I do during the day (before food, 1-2hrs after food, during the night, times in between), as well as all my food intake and carb amounts. I made a table up on Excel and printed a few pages to make my own diary

@Brunneria , can I ask how long after eating your bg would shoot up and back down? Mine have not been instantaneous, and often when I've treated a hypo (usually with a fruit juice/Lucozade/fruity sweeties), I don't tend to hypo again due to what I've eaten. Can that still be RH? As I said in my previous post, I learnt a little about RH last year but I am far from knowledgeable.

Hi @Robinredbreast , yes I've had a half unit echo pen since before Christmas, and has been fantastic for me! I tried a half unit Novorapid last night (when I knew I'd be eating the twix ), and a half unit with breakfast this morning as an experiment, as my bg levels after breakfast are a bit ridiculous. But they do come down by lunchtime, so I don't want to over-do it on the insulin. eg. was 5.6 before breakfast, 13.8 about an hr after eating, 5.3 before lunch, and 5.8 an hr after lunch and before an apple. The whole thing just messes with my head - I never know what to do for the best. Thank you for your well wishes.

x x
 
Hi @Erin85 Congratulations on your pregnancy

I'm not a health professional but I don't think your blood sugars sound excessively weird - although I totally understand how stressful it must be.

It sounds like it's a mix of honeymoon and pregnancy. I got pregnant in my honeymoon period (so to speak!) and my insulin needs were very low (1 unit a day at one point). However, I too got the spikes you mentioned. I took that as being the food that messed with my failing pancreas. My consultant told me my pancreas was still working a bit but was erratic and that meant my blood sugar would spike after meals but then I'd go hypo in a few hours as my pancreas finally pushed out some of its own insulin.

I don't know, but I don't think it's RH. I think it's more likely to be what I've outlined above. How I dealt with it was to bolus a small amount of insulin to control the spike then eat a snack later to stop the hypo.

You'll find even pregnant ladies who've been diabetic for years have to do this sometimes.

Edited to add that in my latest pregnancy my blood sugars didn't start to rise until I was approx 23 weeks.
 
Thank you so much @azure , is good to hear that this could be normal (and someone has experienced it and is sane enough to tell the tale! lol). Can I ask, did you make a drastic change to your diet whilst honeymooning and pregnant? I've been advised to eat small, low GI meals, which I am finding really difficult. The small meals don't seem to satiate my hunger, and I end up craving chocolate! x x
 

It is hard trying to get everything right, but we can only do our best to keep our levels in a good ran during pregnancy as hormones are all over the place.
Good luck and all the best for healthy and a happy pregnancy, take care ps can you try to do some relaxation techniques, yoga, breathing, as this could help with stress with yours and the babies, all round well being ? x
 
@Erin85 I moved your thread to the Pregnancy section.

You'll get more responses from ladies in the same situation.

The only right answers are to control your BS and to eat well to nourish the baby and you. If that means you need half a unit or a whole bucket if insulin, it doesn't matter There's also no 'right' regime. Some ladies will need snacks as I mentioned, some will be able to miss a lunchtime bolus - whatever works for you
 

Try these Erin :-
http://alldayidreamaboutfood.com/2015/03/low-carb-mug-cake-recipes.html

http://lowcarbyum.com/one-minute-chocolate-brownie-mug-cake/
 

No - I ate normally. I feel very strongly about correct nutrition in pregnancy so I wasn't going to limit my diet in any way. I find once you try to cut down on something or limit things too much, you can start to inadvertently affect your calorie and nutrient intake.

There's nothing wrong with low GI meals and if they help you then that's fine, but I didn't eat artificially small meals. I had three normal meals a day plus small snacks. I made sure my meals contained carbs, protein and fat, etc. I had some desserts too, but kept really sweet things for treating hypos, eg Haribos when I went low mid-morning.

Just as another example of the effect of pregnancy and childbirth, in my latest pregnancy in the first half I felt like I'd almost been cured of diabetes. I could eat some things without boluses, I could eat my normal meals but with less insulin, and my basal rate dropped too. Then after delivery, even though I was back on my normal pre-pregnancy insulin, I had numerous sudden hypos and could eat a big meal with hardly any bolus. It was incredible. If only I could stay like that all the time!

So that shows the effect of pregnancy years after diagnosis.
 
Hi @Erin85 have you tried timing your insulin half hour before you eat to try stop the spikes? You might need to snack with 5-10cho a couple of hours after to stop hypos.
Also have you thought about going onto an insulin pump? You can give much smaller doses and adjust your basal rates (I've been type1 since I was 2 and on a pump through 2 pregnancies-couldn't have done without). My 2yr old diagnosed a couple of months ago and she is honeymooning too -the pump helped her with smaller doses etc.
Good luck x
 

Trouble is, my insulin release timings won't mean anything to you - because I am T2 with a totally shot 1st insulin response, insulin resistance, and a completely non-pregnant set of hormones.

If there is one thing I know about RH (from reading our little sub-forum here) we are all completely different. With different speeds of reactivity.

Having said that, I wasn't suggesting that you have RH,
I was just responding to your comment and saying that for RHers is doesn't take many g carbs at all and not to make assumptions. In your situation it is impressive that your nurse had actually heard of the condition! She would be the one to discuss it with, if you have concerns.
 
Hi Erin not sure about the RH but in regards to lows I've always been advised anything below 4 is low and in regards to driving the DVLA say your bloods should not be below 5 so sugars in the 2's is definitely low! I wouldn't worry too much about resistance as everyone seems to be different! xxx

Edited by a mod
 
I think I might try meditation/relaxation @Robinredbreast , at least to ease the anxiety.

@1Sarah1 , I did try bolusing half an hour before breakfast, but even with only 5 units (which reduced the spike), I could still hypo anytime between mid morning and bedtime. As this was the only insulin I was injecting, it was decided that I should reduce my dose and then get rid of it completely. I'm still fairly new to Diabetes, and tbh, the idea of an insulin pump scares me a bit. I've heard lots of people rave about them (and understand how great they are, especially for young children like your daughter), but I'm not sure about being attached to a machine all the time. Although in saying that, I might bring it up at my next pregnancy diabetes clinic and see what my team think about it!

@azure, I am not a fan of the low GI and small portions at all, I'm feeling hungry and grumpy for most of the day. I've decided that as of tomorrow, I'm going to re-introduce my breakfast insulin (slow to start), to conquer this spike. And then hopefully even if I do fancy a non-GI food or treat, I at least won't beat myself up for it.

Thanks @Brunneria, and apologies if I came across as assumptious - as I very well know, when it comes to the quirks of the pancreas, we are all very different lol.

It's funny @jade88, when my DSN saw my food/bg diary, and could see that I was testing and sometimes eating to get to 5 before driving, she told me I didn't need to test at all, as I had no additional insulin in my system. I argued that there was NO way I was in a fit state to drive when having these hypo's (ironically, one of which happened in a car park lol), but she said it was fine. I've taken her advice with a pinch of salt and still test before getting into my car - it doesn't do any harm, and I don't want to be responsible for hurting myself, my baby or someone else if I'm too low behind the wheel.

X x
 
You shouldn't be feeling hungry : ( I wanted to both Like and Hug your post. If you're having to limit your meals so much then it's wise to think about insulin again. Test lots and lots (at one point when I was having hypos I was testing every hour or so for parts of the day) and have a snack ready for after your meal.

A diabetic pregnancy is hard work, however much or little insulin you're on, so don't be disheartened. Frequent adjustments, extra snacks, basal changes, dufferent carb ratios, hypos for no reason - it's all par for the course You sound eminently sensible so I'm sure you'll get on top of it
 
[QUOTE="Erin85,

@Brunneria , can I ask how long after eating your bg would shoot up and back down? Mine have not been instantaneous, and often when I've treated a hypo (usually with a fruit juice/Lucozade/fruity sweeties), I don't tend to hypo again due to what I've eaten. Can that still be RH? As I said in my previous post, I learnt a little about RH last year but I am far
x x[/QUOTE]


There is a form of RH called gastric dumping, which means you use your glucose very, very quickly.
Not saying it is, but there is an awful lot going on and so much that I am too old to concern myself over. Best wishes on your condition.
You do need an endocrinologist though.
 
Hi Erin, gosh you must be so confused with everything going on at the moment,
I can't comment on the RH or the honeymoon period (mine was a longggggg time ago now.. 25/26 years ago
) so obviously don't remember that,

I'm 31w pregnant at the moment and am generally (when not pregnant) on a fair amount of insulin but like @azure said at times in the past few months I've thought good god I am cured because I've been able to eat a (rather carby) meal with either no insulin or an extremely small amount.. And then also the flip side of that where I've ate minimal amount of carbs and bg has shot up even though I've given the dose i know I require for that amount of carbs.. It just constantly changes, i can find it exhausting so I can't imagine how you feel with all that confusion!

I'd second what RRB said about trying some relaxation etc, it will help you both

Also what Sarah said about a pump, I read your reply and understand what you're saying but I'm a huge fan of the pump, don't think I would have managed this pregnancy without it, I know all diabetes teams do things a bit different but where I go you can 'loan' a pump for a fortnight to see what you think of it before committing to one, just a thought as I know you aren't keen but the benefits are massive in my opinion..

Xx
 
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