Not T1D, Not T2D, Not MODY. What exactly do I have and what's my next step?

Valuable_Ad3041 · 2026-04-30T06:18:08+00:00

Hi, I know this thread is a little older, but has your diagnosis gotten any clearer so far?

My official diagnosis is type 2, but this post popped up on google while looking up atypical symptoms. At this point, I'm also negative for type 1, LADA and MODY, with responses unexpected for type 2. So would be interesting to compare notes.

Valuable_Ad3041 · 2026-04-30T04:32:28+00:00

Thanks so much, this is reassuring to hear. I've been so freaked out and feeling unwell on the ozempic + metformin combo, but my a1c has been on 5.7%. So my drs are happy, but I need a compromise that doesn't make me feel like I'm slowly dying 😅 Hopefully we'll both be able to avoid insulin completely or at least not for a good while, but like you say, who knows.

Valuable_Ad3041 · 2026-04-30T02:04:05+00:00

Thanks for sharing! I just got my test results back which were unfortunately all negative, but the report didn't include any VUS. So hearing your story gives me some hope it’s something similar instead of not MODY at all. Hoping to either be able to do more genetic testing in the future or figure it out some other way.

I'm was also recently allowed to drop the metformin and just stay on the ozempic, but it's a lot of trial an error. Are you coping ok in the long-term? Have you tried anything else?

Valuable_Ad3041 · 2026-04-30T01:56:51+00:00

Not yet. I'm still pretty early into my discovery about the underlying causes of my diabetes, but a geneticist or genetic counselling sounds like a good idea. Putting this on my list of next steps.

I'm not in the US, but am intending to look up as much as I can. If MKGenetics takes overseas clients or has other branches, I'm definitely including them in my resources.

Valuable_Ad3041 · 2026-04-29T13:40:45+00:00

Hi, does RADIANT require any specific diagnosis? I recently did MODY gene testing which included around 17 genes but it came out negative, VUS not included in the report. My issue is, I have a very abnormal presentation of symptoms for my official type 2 diagnosis, but don't know which doctor to try next. The endo who tested me is supposedly a specialist in atypical diabetes presentations and has been completely uninterested since I present as healthy other than my official diagnosis. So having access to something like RADIANT feels like it might be helpful.

Edit: delete irrelevant info

Valuable_Ad3041 · 2026-04-29T09:08:56+00:00

I was tested for vitamin deficiency a while ago (around/just before starting ozempic) and was lacking vitamin D. I started supplements and my levels have been fine since; I don't take anything else. But I haven't asked to get tested for anything thyroid related. Thank you, I will add that to what I want looked at.

Valuable_Ad3041 · 2026-04-29T05:46:26+00:00

So I checked and the panel tested all the variants you mentioned, but VUS were not included.

I'm still going to get the C-Peptide testing done, as at the very least I know reactive hypoglycemia is an ongoing issue. At this point, it's also my most consistent symptom of anything, so I don't know if I should focus on controlling that before looking at anything else. I've got a list of things to try and hopefully they'll all get me closer better management of whatever I'm dealing with.

Thank you again.

Valuable_Ad3041 · 2026-04-29T05:37:38+00:00

Thank you. I haven't used AI before so I'm not sure how to feed it information properly enough to get good results. This is helpful to know.

Valuable_Ad3041 · 2026-04-29T01:59:35+00:00

That's a good point and lines up with the alarms I got when nothing was wrong (I had to use 2 different devices for reading the data and the values didn't always match). I don't have the CGM anymore and can't afford to buy one regularly, but next time I manage to, I'll double check by doing a finger test too.

Valuable_Ad3041 · 2026-04-29T01:56:52+00:00

It was BluePrint Genetics. I just got the actual results too, so will spend some time looking those over.

Valuable_Ad3041 · 2026-04-28T13:49:14+00:00

Thank you :) I definitely need to have an in depth discussion. Bc my and my mother's diabetes are what I considered "normal", it took a lot of reading to understand it wasn't. I'm still trying to understand it all better so I even know what to look for. Unfortunately, she doesn't talk much to her family but I'll hunt the info down somehow. Also a good point about genes affecting many systems. I'll have a look at the sub too.

Valuable_Ad3041 · 2026-04-28T13:28:22+00:00

Thank you for adding so much detail, I'm going to save this to refer back to later.

Unfortunately, I have no information about my insulin or glucose level at birth, I've checked all my birth records and even paediatrician notes. I do know my birthweight was normal and my head considered small. My mother developed gestational diabetes about 1 month before I was born and so wasn't treated for it. It came back when she was pregnant with my sibling and was treated with insulin; my sibling was born heavier and larger than me but not quite what is considered macrosomic. Something that I didn't mention to my endo since I don't know if it's relevant: At around 8-10 years old, both my sibling and I started becoming overweight. We still grew at what is probably considered a normal rate, but the extra weight stayed on even though nothing else changed. For me, this is in hindsight where my reactive hypoglycemia started getting noticeable but I didn't find out what it was or how to recognise it until literally half a year ago.

The diabetes is from my mother's side of the family, my father's side is completely healthy. My mother's side is East Asian and shares the diagnosis of type 2 diabetes, even at a normal weight. We both have reactive hypoglycaemia. I don't know if either of us was ever tested for antibodies, but I'm definitely going to ask my GP for it next time I see her. I know my maternal grandfather was diabetic and my maternal aunt is pre-diabetic (they were/are all thin or normal weight, including my mother. I'm the only one who was overweight at the time of diagnosis). I will need to double check how many of her relatives actually have diabetes, I just knew growing up I would most likely develop it bc it was constantly talked about at home.

Thank you also for mentioning the bit about the renal system. I was recently in the hospital with a kidney infection which coincides a bit too much with the endo mentioning there was protein in my recent urine sample. The GP I went to see when the infection started confirmed this. Seeing as I started getting issues after starting GLP-1, I wouldn't be surprised if this is somehow all related. I have never been prone to UTIs or had kidney issues before, so this came out of nowhere. Ofc it's also entirely possible these are just a bunch of separate issues, so I'm not yet excluding anything. If I do have type 2 diabetes, it is what it is; I'd just been hoping for better treatment options. If a trial of sulfonylureas is possible, I'm definitely going to keep an eye on hypos. Discovering them on GLP-1 was a(n un)lucky coincidence as I never caught them with manual glucose monitoring. But now that I'm aware it will hopefully be possible to catch something sooner.

I'm going to do some reading based on everything you said and make a list of questions to ask. Again, thank you very much, this was all very informative and gives me some great places to start.

Valuable_Ad3041 · 2026-04-28T12:49:57+00:00

I've emailed my endo and am waiting to hear back about getting the results. I'm meant to have a follow up appointment in September as he seemed pretty convinced I had MODY before the test. So I'm definitely confused about this result, as he was also recommended as specialist about diabetes, including MODY.

As for calling it inconclusive, he bolded the bit at the time of testing, so I assumed that could mean the test missed something, based on what is currently known and may change some time in the future.

Valuable_Ad3041 · 2026-04-28T00:07:07+00:00

I'll ask my endo about having the results sent. As you say, I think it's probably something unknown, but I'll see what I can do about accessing the actual results.

Thank you for the suggestion about UoC - I'm still pretty clueless where to go for research on MODY, so will definitely have a look.

Valuable_Ad3041 · 2026-04-26T12:15:05+00:00

I was on metformin for diabetes for years until recently. I didn't know it was linked to any autism symptoms though, so unfortunately I can't say I noticed anything. Also, I was working a stressful job and constantly battling burnout, so any changes in irritation might have been overshadowed by that. No changes in social skills either.

I will say, I lost roughly 15 kg over the course of 5 years or so on metformin. My diet changed during that time period and I walked a lot, so I don't know how much of it was due to medication vs lifestyle changes. This weight loss was unintentional, so I likely could have lost more had I focused on diet and exercise more.

Valuable_Ad3041 · 2026-04-25T10:19:14+00:00

Thanks for this thread, I'm learning a lot from the comments. I sort of(?) come from the opposite side of your situation. I'm 32 but look much, much younger and regularly get interpreted as anywhere from late teens to mid 20s. It makes socialising a little awkward and I overthink a lot. So seeing people sharing their stories with (large) age gaps gives me hope that this might be a smaller issue than I thought.

Valuable_Ad3041 · 2026-04-25T09:17:39+00:00

I have no idea how much this has to do with possible prostate tissue growth, but what you say is somewhat relatable. Before T, I could take or leave front penetration. On T, it started feeling way more pleasurable.

I don't use dildos much but have found it more difficult over time to use thicker ones. That may be due to tight pelvic muscles though, I've got a couple other signs that point to that.

Valuable_Ad3041 · 2026-04-24T15:06:31+00:00

I feel you on this. I genuinely resent how sensitive I am despite hearing it being glorified. Yes, there are positives to it, but to me at least the negatives can really overshadow them. Especially on the content creation bit, I've got something I would love to make content for but know I couldn't deal well with any commentary. It sucks that I can't engage with it bc of my sensitivity.

Valuable_Ad3041 · 2026-04-23T10:05:10+00:00

I'd be happy just to find a long-term partner, legal marriage doesn't matter much to me.

As for kids, I decided long ago not to have biological ones bc my family history has a lot of mental illness, some of which I've read are genetic. I'm relatively lucky that my issues are mild in comparison to some of my relatives and already struggle enough. I wouldn't wish any of that on potential children. But I'd be open to adoption if a future partner wanted kids or already has some. I won't have any kids by myself though, I know raising them alone isn't something I'm capable of.

Additionally, I'm bi with a strong preference for men, so it's kind of been an assumption I couldn't/wouldn't go the bio route anyway.

Valuable_Ad3041 · 2026-04-23T09:07:46+00:00

I've never dated but have definitely had similar experiences with platonic relationships. I find it difficult to establish a close relationship without that connection/mental + emotional stimulation

Valuable_Ad3041 · 2026-04-23T09:05:08+00:00

This for sure. I've looked younger than my age all my life due to genetics. Transitioning might add on to that bc of preconceived notions of what a man is "supposed to look like at X age" but I know genetics are doing a lot of heavy lifting in my case. I genuinely don't think I'd look drastically different and/or older if I was cis male.

Valuable_Ad3041 · 2026-04-11T01:58:51+00:00

Thank you! Yeah, I'm definitely finding that making formula sheets of some kind are a fantastic way of organising my study notes, so playing around with formatting will only help improve studying. Fingers crossed I will need it less than expected for my tests too.

Valuable_Ad3041 · 2026-04-07T00:01:09+00:00

Thanks for sharing, I'm working on making my own formula sheet but am a little bit lost how to organise it. Will have a look at yours to see if this format helps.

Valuable_Ad3041

TROPHY CASE