Newly diagnosed LADA

I was diagnosed LADA about 2 and a half years ago. I was immediately given the LIBRE and finger stick supplies. The LIBRE was so off and not accurate at all. If you can get a Dexcom, do it. I still make insulin but went on insulin both long acting and fast acting to get better control. My doc also said it may extend the honeymoon phase by giving my pancreas a break. I now usually have good control. Check vitamin B-12 levels. Being thin and vegan and having diabetes will put you at risk for being low. I was so low and that really makes you feel lousy. LADA is manageable and life is still good! :slight_smile:

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Yes, I am very curious too

The Faroe Islands have a lot of Type 2’s. I’m really not sure about type 1’s. But the research I’ve read says like @Tim12 has said.

Tim12

There’s no sign that risk for LADA is genetically any different than any other T1.

Broadly, folks in Northern Europe and especially Scandinavia (including Faror islands) are the most likely to have genetic factors leading to T1.

Being Northern European has given me LADA also Dupuytren’s contractures. Just had fourth surgery. I think my dad was an LADA but was treated for DM2. Got the dupuytrens from moms side. She had minor ones. Not even noticeable. Mine are epic (per doctor). Probably exacerbated by the diabetes. Interesting. Maybe should have picked different parents ha ha.

I’m sorry about your new diagnosis and feeling overwhelmed.

I’ve been a type 1 diabetic for 25 years. Ten years I was on daily injections through insulin pens and they have a really small needle that you screw on when giving yourself some insulin.

Counting carbs I did not now about until ten years ago through working with a nurse and going on an insulin pump that takes all the guessing and all the calculations out of it. I don’t think I’ll ever know how to calculate carbs along with your current blood sugar.

I’m on a Medtronic 670g pump with a guardian 3 sensor. You program the sensor with a few real blood sugars from your meter and then it knows your blood sugar. It will warn you if it’s high and also if it’s low and cut down the insulin for you. This is when you have a snack to bring your blood sugar up. When it comes to eating, it figures out how much insulin to give you for your meal. Enter in total number of carbs for your meal and your current blood sugar and it will deliver precise dose.

Yes, it took me a little time to get used to but it put an end to going in unsanitary bathrooms at restaurants to do my insulin shot.

There are many insulin pumps and in my opinion there are two good sensors. The guardian 3 made by Medtronic and the Dexcom 5 n 6. I like these bc they work in conjunction with a pump. They communicate, they tell you when your getting a high or low.

If you want a tubeless pump wait. Omnipod is coming out with a new pump that will work in unison with the Dexcom sensors. Maybe the fall.

If tube doesn’t matter and you want to go with the company that has been making pumps for over 30 years. Stay with Medtronic. I just feel some companies are trying to catch up with Medtronic’s technology. Every time I think I’m ready to switch I stay with Medtronic. This is based off my comfort and it’s reliability.

Also, always find out turn around time on ordering supplies. You do not want to wait months. Call the 800#s n see where you’re sent to. You don’t want a-run around when you’re having problems with your pump. Find out what the failure rate for sensors is for both Dexcom and Medtronic’s Guardian 3.

No matter what form of therapy you use insulin pens or insulin pumps. You will always chase numbers up and down if you don’t eat. They recommend breakfast, snack, lunch, snack, dinner, snack. I’m really really bad at this but if your getting lows it’s from not eating or taking too much meds. I personally don’t trust the Freestyle Libre, only bc mine has been around 20+ years. I believe whatever device your using as a sensor or CGM, it needs some manual finger stick testing just to make sure it’s telling you accurate information. You could eat a snickers bc you thought it was real low but it was real high. Now you need a boat load of insulin.

Well, I hope this wasn’t information overload. Good luck I hope your blood sugars stabilize and you get on track soon.

I wish I could remember who told me that. It was one of our members who was super knowledgeable about genetic testing (I am not). I can’t recall. Its someone who I haven’t seen in a while. Maybe it was @niccolo. I don’t recall.

Lol…@mohe0001 I quoted @Tim12, but I did and do agree with him!

Oh, I get so confused about LADAs. I’ll have to read. I can never remember. Maybe I’m thinking of the Modys.

Yes, its the Modys that do the genetic testing.

Sorry guys. I always get you two confused. Thanks for reminding me AGAIN. You will be reminding me for years to come.

Diabetes MODY: Causes, Symptoms, Diagnosis and Treatment.

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I’m One of those weirdos and unfortunately for me, because I’m fat, I was miss diagnosed for many years. I’ve been seeing Endocronologist since I was a child and I’m now 42. Ironically, I was going to a diabetes class ran by two diabetes psychologist and one of them had a strong opinion that with my underlying autoimmune disease is, that there was a good chance that I had type 1 diabetes…

I was already using a CGM by this time and my endocrinologist wanted me to use insulin pump which I was not happy about. But now that I’ve been using one, it has been really helpful and controlling my HA1C and in managing the LADA. I am very pleased because I do have hypoglycemia and awareness and, of course, the hyperglycemia and this is not helped by the frequent need for IV and oral steroids to help control why I don’t even diseases…

I am using voice to text so if my sentences are not coherent, I apologize…

It might help to ask your doctor about getting a CGM which can really help especially with keeping in touch with your blood sugar changes. I’m not sure why they would not put you on insulin because for some, like myself… I’m so much more responsive to insulin and I never was very responsive to oral medications which really should have been a clue… On top of having a couple of episodes with DKA but being fat and all, comes with a lot of stigma and so many doctors just assume. Apparently some psychologists don’t just assume!

It’s more common for people who are slim to have LADA and sometimes that helps the doctors to hone on the diagnoses even though generally it’s still rare. I cannot tell you how difficult it is to explain to other people then I am between diabetes type 1 and 2 or diabetes 1.5

I was told that some people with LADA and other way or types of rare autoimmune diabetes sometimes are responsive to non-insulin medications but eventually progress to need insulin where as others sometimes need insulin right away. I guess it’s believed that if you can hold off on the insulin as long as possible, that’s better since it doesn’t really do anything to prevent heart or kidney involvement, etc. It’s purely a hormone to help control blood sugar. Although, since you are skinny, it probably isn’t a factor for weight gain since being on insulin can make you hold onto fat.

Anyways, I would ask for information about the freestyle libre or Dexcom G6 or other CGM that’s popular right now…

I have a Dexcom G6 and within the first three months of my using it, I had significant impact and I was on injectable insulin along with non-insulin medication. Now, I’m no longer on long acting insulin but the insulin that goes through my phone and I’ve had a drastic improvement.

I don’t really know what to say, but as someone with multiple autoimmune diseases and LADA, know that you are not alone…

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Honestly, years ago I heard type 1.5 used. I rarely hear it anymore. But you don’t make insulin with type 1. Just use type 1. Because you are a type 1. Even saying that, people still get confused.

Ah HA!

I knew these existed, but never have the info available when someone inquires.
If you feel comfortable posting more detailed contact info for this type of professional, I will refer people. But, its good already that you confirm they exist.
I know they are out there somewhere…

Unfortunately, they are difficult to find.

Here in San Diego, we are blessed because we have a extremely rare organization called BDI (Behavioral Diabetes Institute). Both psychologists are diabetes psychologists and one of the famous ones is Dr William (Bill) Polonsky, who is a psychologist and CDE plus he does clinical research and also In practice which is unusual. He also wrote a book on diabetes burnout and maybe another book too! Lol Both him and BDI psychologist, Dr Guzman often speak at professional and patient conferences. the TCOYD (taking care of your diabetes) conferences and programs that are held in many locations. They are recently holding some programs online that hundreds attend via zoom. Check out their site if you don’t know about it!

https://behavioraldiabetes.org/about/

TCOYD
https://tcoyd.org/

There is another diabetes psychologist running a organization here in SD. I think it’s new but he’s on a lot of social media platforms… dr Mark Heyman, Also a psychologist anf CDE but also has type 1
https://cdmh.org/about-mark-heyman/

In scripps healthcare, the Endocronology office has a diabetes psychologist too but many don’t know that she is available! I guess the Endocronologists refer people based on emerging issues they are aware of

I’m sure that you can contact these sites or psychologists to see if they know of others. I’m fairly sure they have a lot of connections/resources.

Another option to explore is diabetes psychologists are a sub-specialty of the larger umbrella sub-speciality in Clinical Health Psychology also known as Behavioral Medicine. It’s a branch of clinical psych that many people are unaware of. They are all about the mind-body connection and focus a lot on people with chronic illnesses/pain and research is mostly aimed in this direction although bc NIH, AMA, etc grant funding is primarily working on cancer, it’s lesser focus is on other chronic diseases unfortunately. Just the same, health psychologist and medical social workers too are trained to work with many aspects of diseases…

You are more likely to find a health psychologist than a diabetes psychologist. One of the primary orgs in this field is SBM (society of behavioral medicine)
https://www.sbm.org/

Psychology today has a ‘find a therapist’ database but, of course, only includes those registered there. I’ve never tried searching health psychologists there and I know that many in the public aren’t aware of this branch so not sure how or if it would be categorized as such! I was heading to grad school to become a health psychologist but health got in the way… irony lol… despite being part of a lab doing behavioral medicine research, attending professional conferences in psychology and other exposures, even I DIDNT know that a sub specialty branch exists of Diabetes psychology!!! It was a shock but a welcome one!!
https://www.psychologytoday.com/us/therapists

I hope these links and information helps!

I must say that the first therapist I actually felt safe with and trusted was a health psychologist. Eventually she disclosed to me that she also has chronic pain, autoimmune diseases and, in fact, we had some crossover with our diagnoses. I didn’t catch on earlier but I remember being pleasantly surprised that I didn’t have to Teach the therapist, doctor, strangers etc about my diseases and them actually getting it!! She was amazing and snarky and sarcastic too so that, for me, mace everything better!!

Let me know how your search goes

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Wow, that’s super helpful information. I’ll bookmark this for the next time. You are my new go-to diabetes psychology expert!

Many are still used to the juvenile diabetes designation. And people seem to forget that we grow up to be adults, but still have the “juvenile” kind.

“Insulin dependent diabetes” also gets fuzzy, as many Type 2 now also take insulin.

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I’ve also heard some good things about this therapist in NYC

Look what I just found! It came in from Tidepool…

We had some technical difficulties with our webinar with Dr. Jill Weissberg-Benchell and have rescheduled it for next week on Thursday, June 11. There’s no need to re-register for this if you had already signed up. You should have received an update from us about this already.

Which means we’ll have two webinars taking place next week as our conversation with Dr. Mark Heyman is scheduled for Tuesday, June 9.

Both webinars will be recorded, so feel free to sign up even if you can’t make it and we’ll send you a link to the archive when it’s published to our YouTube channel.

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I’m still waiting after at least 10 years of testing, :grimacing: on official accurate diagnosis.i have a few and some argue with each other but never safely look into it.even when I had insurance.
So yes I agree :slightly_smiling_face: that is good medical pros.they know what they are doing and are putting patient first.Glad to hear people have quality care.the libre is awesome and affordable- just my personal opinion. I think I’ve tried almost all current versions of sensors from different companies.

There are many overlapping conditions. At my journey start I was told possible celiac,they kept checking my thyroid ( over and over ) I had bad anemia from” Malabsorption “ recently I found hemolytic anemia despite I have trouble with low b12, low vitD. And so much more.The worst of all my symptoms has always been hypoglycemia similar as u describe.
I think many peoples results might have similarities but In the end everyone is different.

I’ve met people with your condition. I dOnt know enough about all the condition. One lady kept saying she had so much relief with the prescription the doctor gave her.
I have had plenty experience with similar blood sugar issue as you describe. I’m sure you probably need certain foods With your condition. some need to stay away from certain foods and others need to eat more of them. Definitely ask your doctor about the foods.

How long have you been vegan and do you have special blends of food to get nutrient variety?My son did this and he was very thin but he did this on his own and I encouraged him to look into the proper diet for vegan. What do you feel best on and which foods make u feel kind of sick?Something all doctors seem to agree is a protein with carb. Finding the right food combo for your personal needs is One key for hypoglycemia. I do agree with others on the low,high glycemic it allowed me to still enjoy life by having some treats like using agave with my protein pancakes.

I also have been slim Really for most of my life. Ok at times they would say underweight no matter how well I ate. I believe one of the recent doctors wanted to test me for addisons or adrenal insufficiency but I lost insurance.
When I started taking a corticosteroids inhaler for asthma and that’s the first time,literally I ever gained weight. Even when I had kids lol I didn’t gain much.

Below this link describes some hormones relations to your condition and possible cause of hypoglycemia. Some articles are written for journals but u get an idea and maybe ask your doctor about the connection.

Lada is the same as type one, it is not an actual diagnosis code even. I have both hashis and type 1. I was diagnosed first with type 1 in dka, insulin dependent right away. Had I been diagnosed earlier all of it could have been avoided by going on insulin.

Then hashis diagnosed 2 years later, but I am sure I had had it already. I used to have bad low bg long before type 1.

What helped me a great deal with bg control was properly treating hashis with not just levo T4 but With lio T3 as well. It is still pretty bad but a lot better.

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Does the low bg have something to do with hashi? Cause I have really low from time to time, and the rest of the time kind of high. Not super high, but too high.
My doctor said I would be getting Sitagliptin Pills (Januvia) in about three weeks (she wanted to wait three months, but I didn’t really want to wait that long), but now, these last 4 days, my fbg has been around 160 every morning, so my nurse said she would talk to my doctor to see what she thinks about that, and if at least get the pills a bit sooner

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