Mid-testing for LADA, could use feedback and support (sorry, long)

Type 1 and LADA
1

Hi everyone,

In the middle of 2018 I started seemingly having hypoglycemic episodes along with fatigue, lightheadedness, and a LOT of hunger, unbearable hunger sometimes and the hangry feelings that come with that. A meter showed I wasn’t actually going low, though. I’ve been on metformin since July (I have PCOS, so my doc let me try it as it helped friends with PCOS with similar issues) and an increasingly strict diet since then but no routine for those has kept my symptoms at bay for more than 2-3 weeks. In the middle of that time I went off the metformin for a week ahead of a 2-hour OGTT, which showed high 2-hour glucose, so I was diagnosed with pre-diabetes. I used a Libre for 2 weeks after restarting the metformin and it showed the levels evening out each day as my symptoms got better (then of course they got worse after a few more weeks). At times my symptoms have been so bad I was nearly bedridden.

My main issue now is that eating seems to really increase my symptoms, mainly at breakfast and lunch/mid-afternoon. Shortly after eating I often get shaky, STARVING, and have difficulty concentrating on work. It’s like I lose a chunk of IQ points; I sound like an idiot sometimes. It’s really, really embarrassing and unpleasant sometimes and doesn’t seem to be related to what food I’m actually eating. My blood sugar is controlled right now as long as I don’t stray from the diet too much and levels don’t seem to relate to my symptoms. Since I can’t alter my metformin in either direction without feeling worse, can’t diet any more strictly, and have symptoms in common with it, I pushed for LADA-related testing. I got my glucose, insulin, and c-peptide checked (non-fasting) and so far had 2 antibodies checked (happy to share specific #s if it would help - I also have some from the OGTT). The ones tested so far were GAD65 and ICA, and both were negative. I should be able to get the other 3 tested next week but I’m not holding out hope for a clear answer.

At this point I really feel like I have LADA given my symptoms and history (hypothyroidism, thin person given basically a T2 (pre in my case) diagnosis) and have no clue what else this could even be, but with normal glucose levels, albeit with metformin and strict eating, and so far negative antibodies, I’m afraid of how much longer dealing with these symptoms might go on. It’s really affecting my day-to-day life and I have a toddler I can’t do much with like this, which gets really depressing.

Did anyone here with LADA have anything like this early on or does it sound like I’m grasping at straws and have something else? The hunger is what’s really killing me. I even cut back on some of my daily eating because I’m better off having normal hunger from not having eggs before leaving the house or my afternoon snack than the post-eating mess they started causing. I know I need those calories though so this isn’t sustainable for very long - I’ve always been thin and have already lost a few pounds. It overall feels like my body can make insulin right now, if I eat well enough, but is really unhappy to be doing so (I realize that might sound crazy - hopefully people understand).

Finally, does anyone have advice for someone in my position, and long-shot - if anyone’s in Toronto could they recommend an endocrinologist? Mine seems to focus on T2. I don’t even know if they’re letting me do this bloodwork out of actually thinking it could be LADA or are just humouring me.

Thanks in advance for any help. I just want my normal life back :cry:

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I am a type 1. I get low BG-like symptoms with normal BG if I am hungry. I also get those symptoms if there has been a rapid decrease in my BG (even if it doesn’t go low). If I take too much insulin at meal time, sometimes I will be hungry again within an hour or two if BG is dropping rapidly back to normal after a post-meal high BG. I also got low BG-like symptoms recently (with normal BG) at high altitude because my body was working hard and I just needed more food than normal.

I think that even normal people get those symptoms when they are hungry. Symptoms of low BG are similar to symptoms of being hungry. Sometimes your just hungry and need to eat more. Might be associated with you weight loss. That might indicate that you need more food to maintain yourself.

I try to eat so that I feel OK. If you don’t feel good, it may make sense to eat more. You need to be able to function, first and foremost, especially with a toddler. Think of having a toddler like going on a mountain trek - it requires more energy output and food to survive the journey. :slight_smile: Its likely that you can adjust your meds to fit a diet that works better for you.

3

Unfortunately, I’ve tried eating more - a lot more at times - and all I got was feeling like I was force-feeding myself (because I was) and put myself off foods I’d loved for months after. My symptoms didn’t improve at all. I also tracked calories to check that for sure and I could have most for my day by mid-afternoon and still be starving.

My eating routine has always been really consistent before this and nothing had changed prior to my symptoms starting - if anything, my caloric need went down because my child started daycare. My weight loss is also much more recent and so far only a few pounds.

4

hmmmm…tricky. Shouldn’t be getting light headed with normal BG. Hows your blood pressure? If it were me, I would check in with a cardiologist or neurologist. But, kinda depends on your instincts there about yourself. I’m assuming theres no gasteoparesis at play…someone might bring that up.

5

I had a cardiac workup early on (EKG, stress test/echocardiogram/48-hour Holter monitor) and it came back clear. Gastroparesis doesn’t fit too well but I guess could be possible. My instincts are that there’s something hormonal-ish going on in response to food. It often feels like there’s a rush of something happening, if that makes sense. I’ve also wondered if it’s some weird form of anxiety at play but I’ll be ignoring everything pretty well, or just be too busy to even think about any of it, and suddenly have symptoms hit. I’ve also never really been prone to anxiety (only your typical grad school-related temporary anxiety) and aside from the stress of this, my stress has been at its lowest in years since before this started. If anything, life’s gotten better since it started in terms of career and family stuff. But I do think one of my next steps if nothing shows LADA may be to try some zoloft and see what happens. If I have anxiety it should help and if I don’t, it’d help me cope with this junk continuing. I’m also tempted to see what my body does without metformin since my endo never really thought I needed it and it might reveal something, but I’m afraid of how useless I’d end up at my job.

6

This sure is a tricky one. Someone I know had the same, “feels like low BG, but its not low BG,” complaints some months ago. They found something obscure (but, not bad). He had sleep studies. Result: Sleep apnea machine. They discovered that his brain goes directly from awake into REM sleep with no stages in between. That’s all I recall. They were able to fix things. Dont give up.

7

Sounds to me like a random release of adrenaline and/or cortisol. If it were me, I would see an endocrinologist about this and insist on being tested for benign tumors of the adrenal glands and the pituitary, which controls them.

1 Like
8

Oh wow! That gives me some hope that there’s some explanation to be found here.

9

I’ve been seeing an endo and they did bloodwork that’s supposed to catch that stuff, but it all came out normal. Maybe I need a retest? They’ve mentioned trying a mixed meal test maybe, so if we do that I’ll be sure to ask that those levels be checked as part of it. I also had an abdominal ultrasound that came back clear, but I don’t know exactly what was assessed with it - the pancreas for sure, but not sure about the adrenal glands.

10

My daughter was dxd with T1 at 11 & PCOS at 13. She’s now almost 21 & was dxd with Hashimoto’s 18 months ago. The hunger & low feelings you describe sound similar to some of her issues. How old is your toddler? Have you have a full hormone panel recently? Is your thyroid optimized ( have you been tested other than TSH & T4)?

I would be looking more into each issue & how they may affect each other.

11

Huh, I never would have thought to push on the thyroid so that’s really helpful! Was your daughter able to get any help for her symptoms?

I have had normal TSH results before and at the beginning of this and was negative for a Hastimoto’s antibody when I was pregnant (2016 - my daughter’s 2 and a half) but perhaps that part could have changed even if my TSH is okay? I haven’t had thyroid tests run beyond TSH for years. Every doctor I’ve seen keeps saying anything off with my thyroid would be reflected with it first but at this point I’d be willing to push for the detailed testing (there was much less reason to push when metformin + diet routines seemed to just need further tweaking - clearly that’s not enough for this anymore).

Thank you all so much for your feedback! This is so incredibly helpful for my next list of questions and requests for my endo! If anyone else has any more ideas or experiences like this please let me know. And sorry to invade your space with what seems to not actually be LADA . . . :flushed: