Newly Diagnosed Type 1 + Newly Pregnant


#22

Initially I only saw a regular family doctor. He is who misdiagnosed me. There was a long wait for me to see an endo, but once I did they were able to quickly diagnose me through many tests. My original doctor was…very apathetic and not at all proactive with my healthcare. Luckily my endo is much more on the ball.


#23

It is TOTALLY not your fault.

It’s a worrying time when you’re pregnant especially if its possibly your first.

In simple terms I’m trying to reassure you that you’re not a T1D because you’re put on insulin this happens when diagnosed with T2D and the additional stress your body is going through, insulin prescribing in such cases isn’t uncommon.

But it is just not acceptable for doctors to tell their patients they are now type 1 it simply isnt the case.

T1D is a childhood condition usually post infection and it’s a form of autoimmune disease.

So many people get told that they need insulin to help with T2D this isnt rare at all but it will never be T2D becoming T1D.

T1D is a nasty condition incurable and damaging. It almost never starts in adulthood and the very VERY rare occasions that it does are usually diagnosed far to late and sometimes post mortem.

I’m 99.99% certain your diabetes will probably, one can never say definitely, almost disappear once your beautiful baby boy/girl is born. You’ll be run ragged rushing about after them your BG,will drop to more normal levels and hopefully you’ll not need to take insulin any more. Be prepared for a quite big baby sadly that’s a complication of diabetic pregnancy. Not normally to bad just big babies. This is PROBABLY why you’ve been put on insulin to reduce this risk, by no means life threatening.

Can be a bit uncomfortable though.

I wish you the best journey together with your new baby and family and I hope you’ll keep in touch and let me know how things go.

Regards

Paul


#24

OK, on another forum I am on we use “HIPPO” to indicate we haven’t read everything posted above our post. So HIPPO, esp to Paul’s walls of text.

You lost me as soon as you wrote “adults don’t get T1.” This is simply not true and I don’t know why anyone would state with such conviction. I am bothering to respond to it since many people come to this forum to seek information and they need to realize we are all just strangers – some more, some less informed – posting on the internet.

For many, many of us on this forum, T1D presented itself in adulthood and yes, it is an auto-immune disease. However it is diagnosable with biomarkers. Go read some actual research if you are really interested.

To the OP, get on the pump, monitor like crazy and react with sufficient amounts of insulin. Try to do take it a day at a time and learn as much as you can from legitimate sources. I have posted some in my earlier posts on this forum (was pregnant last year and have a spirited 11-month old now). Have no more time today to link to them, but if you let me know you are having trouble finding them, will make sure to send them your way the next time I log in. Best of luck!


#25

Thank you I’m more informed now.

We can agree to disagree.

It is so rare for biomarker adults to become T1D but you’re obviously far clever than me and I apologise for my long messages.

How long have you been a T1D what age were you diagnosed. Are you qualified in this subject at all I learn more and am corrected more ALL the time and thank people for that.

Paul


#26

Thank you!!


#27

Just as an update: My insurance is truly dragging on this pump thing. They have me listed as ‘pending’ and will decide if they want to/are willing to cover by mid November at the latest. Obviously, this is all fairly new to me. Is this the norm??


#29

Not sure if it’s the norm for pumps in particular (have been on mine since my diagnosis in 2008; it took about three months for me), but it’s certainly the norm in the US for insurance to not be very accommodating for expensive devices / treatments. This will continue to be common unfortunately as you will need insulin / test strips / supplies / etc., so just add “insurance battles” to the repertoire of new things you’ll have to do as a person with T1D.


#30

No, we can’t agree to disagree where the experts are very clear on a given fact.

It is not at all rare for adults to be diagnosed with T1D. Here is one recent estimate of how common it is in the US https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5688827/ (and contains references to similar studies in other countries).

I was 29 when diagnosed, which was a decade ago. I was lucky enough to be living at a place that has one of the premier research centers for T1D in the world (the first insulin pump was developed there, among other things) and was educated on my new disease by a superb team. I also immediately enrolled in a clinical study for new-onset T1D patients during which a lot of additional information was made available to me both about the disease in general and my particular case.

I don’t know what kind of qualifications you are looking for if you won’t even accept the knowledge medical experts give us on this topic. I am not one, but I am an academic (i.e., both have access to peer-review medical journals and know how to read research in general) and have been actively trying to remain informed about constant developments in the research about T1, especially treatments and best practices for management.


#31

@lkfarlow Just quickly my best recommendations for information on pregnancy and diabetes:

The two popular books I know of listed in an old post here. One important caveat is that the authors had other conditions too, not just T1D, which is kind of a big difference from someone who only has that condition, especially if it is well-controlled. Nonetheless, they provide good starting points:

Then there is this book, which is a medical management text. Unfortunately I have not been able to find an updated edition: https://books.google.com/books?id=I03DBwAAQBAJ&dq. You can search for specific terms and get a lot of the text free online, as it isn’t something likely to be available from your local library.

Again, best of luck!


#32

And I had just turned 28 when I was dx’d over three decades ago. I too was lucky to have a great PCP who didn’t have any trouble diagnosing it as “juvenile,” as it was still called back then (my medical record still says “juvenile type”). In my case it was sudden and acute, and I was in immanent DKA when my wife dragged me in, so maybe easier to dx correctly than the slower onset variant. Back then the T1/T2 nomenclature hadn’t yet been formally accepted, but he did tell me about it, while explaining how it was that I’d been dx’d with something only kids were supposed to get: that it wasn’t in fact restricted to kids–that you could get it at pretty much any age–and the new designations were going to do away with the common misunderstanding that age was a determining factor in “juvenile.” I get a wry SMH laugh out of that now that “T1/T2” is fully ensconced, and instead of fixing the misperception you have people saying “You can’t have T1, you’re too old!” I think what confuses a lot of people, including unfortunately many diagnosing GPs, is that Type 2 does track much more strongly with age, so the assumption “If you’re an adult it must be T2!” persists. It’s the asymmetry that makes it hard to root out of peoples’ perceptions.


#33

8.4 isn’t terrible! For pregnancies I know they want 6’s but 8.4 isn’t the end of the world. I’d recommend a dexcom CGM to be able to monitor yourself better, know where your sugars are headed, etc. Try to avoid complex carbs during your pregnancy so pizza, rice, tortillas, etc. That’s where a lot of my highs come from. I’d say for 9 month just be super strict with your diet and test A LOT. Good luck!


#35

It would be good if we could go back to the OP’s original post and not veer off topic. Thanks.