Not sure what type it is - Please help!

My daughter (who will be 16 years old in a month) is on Metformin since October 2020.
Here is the long story.
My husband’s family has a very strong Type 2 diabetes history. Almost everyone above 30 years old has type 2. My husband is a type 2 diabetic for the last 20 years.

Based on this family history, my daughter’s pediatrician started monitoring her A1C since she was 9 years old. She is 5 feet 3.5 inches in height, weight 192 pounds. her A1 was always between 5.5. and 6.1 for the last 6 years until October 2020. In October 2020 her A1C reached 6.5. We thought it was due to sitting home & everything virtual, no physical activity due to the pandemic. Because that endocrinologist was moving to Canada, she transferred our records to another pedi endocrinologist in January 2021. This new pediatrician ordered a diabetic antibody panel. Until then, we didn’t know what it is. To our surprise, GAD65 came back positive (19). The endocrinologist called & told me that my daughter may be developing type 1 slowly. We were shocked, saddened by these unexpected results. My daughter is still on Metformin 1000mg at night & 500mg morning. Her A1c went down from 6.5 to 5.4 in January. it went up to 5.7 in March, 2021. We are not sure what to do next, as they are not confirming if it is Type 1 or Type 2 or Type 1.5. We are ready to participate in any Trialnet study that can help my daughter. Sorry for a lengthy message. Please help us understand what can happen & is there anything we can do to delay it or prevent it.

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If you have the antibodies it’s a sign of type 1. The antibodies destroy the cells that make insulin. There really is no official type 1.5 or official description of what that really means. There are a few variations of diabetes/subsets out there. One is MODY except that she has antibodies.

I’m pretty sure an A1c of 6.5 would not be a fluke either. A1c is an average of blood sugars over 3 months. A “normal” person would not have blood sugars raised over a 3 month period even if sitting around as insulin works properly to lower any blood sugar levels except in a diabetic or a brief time period, maybe because you are sick or some medications.

Type 2 is much more genetically inherited than a type 1, but type 1 is inherited too. Although some people don’t seem to have a relative that has it, a gene or genes inherited is where it almost always starts. (exceptions like pancreas trauma). They are working on identifying those genes now. 40% of type 1’s are misdiagnosed as a type 2 at first. My next question would also be on your husbands side is anyone on insulin? Being put on insulin within 3 years is a sign of type 1. I was misdiagnosed for over 8 years, mostly managed because I was put on insulin because medications made me sick. If people on you husbands side required insulin fairly early, within a few years, they could actually be misdiagnosed type 1’s and never tested. It turns out a lot of us are finally tested and diagnosed right when we switch doctors. As a type 1 you require insulin. But a type 1 can also end up being insulin resistant like a type 2.

A type 1 can be misdiagnosed for a long time because a type 1/LADA can make some insulin for quite a while before all the cells are destroyed, 8 years plus sometimes. As a younger person this usually occurs pretty fast. Weeks in children and it is more unusual to have slow onset as a young adult, but it does happen. One thing you learn fast is we can all be different in our responses.

But antibodies present mean that her cells are being destroyed and she will have full blown type 1 at some point. The prevailing theory is a type 1 inherits a gene that makes you susceptible to type 1 and at some point you are exposed to an unidentified virus that makes the process happen. Covid seems to be causing more cases right now.

Medications and lifestyle changes work at first because you still make insulin…that starts to change as you make less and less until you make none. There is no stopping it yet, but there has been rumors that early insulin helps your pancreas last longer or that some medications might do the same thing. That all will stop at some point. And no one can tell you whether it will be weeks, months or years.

Type 1 is a pain, but we have lots of technology nowadays to help and things are so much better and improving every year.

You will want a cgm for her, maybe not quite yet. But it will be one of the most powerful tools. It allows you to see your blood sugar levels 24/7 without testing constantly, you will still have to do some testing to verify levels, but it is a true blessing.

I’m sure some other people will come along with more input as some of us traveled this path in different ways. I got mine at 46 and a lot developed it when they were younger. 50% are diagnosed over the age of 30, which means 50% under the age of 30.

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I’ve got nothing to add to @Marie20 's great response… But you said you were interested in research.

Go over to www.clinicaltrials.gov and look at the studies going on in your area. There are a lot of researchers right now looking for recently diagnosed Type 1s who are still making their own insulin. They’re trying to prolong the life of the pancreas, because the insulin we make inside our body is a lot more effective than the stuff we inject from a vial. The teenage years are some of the hardest to manage (hormones do crazy things to us!) and this might really improve her quality of life.

Also, I highly encourage you to see if there’s a diabetic camp near you. A lot of them host weekends for teenagers who don’t really want to do the go away to summer camp thing anymore. It’s a great way to boost self-esteem and confidence in dealing with this… And removes the freak-factor feeling of being different. You can’t underestimate the importance of that!

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Thanks so much for a detailed explanation. I appreciate your time. We live in Rhode island. There is a clinical trail in Yale medical school for recently diagnosed type1s. But as her doctor is not confirmed yet, she is not eligible for that trail.

We don’t know what to do now.

My daughter is also so confused & struggling to understand what is happening with her body.

Thank you so much!!!

From 2015 to till March 2020, her A1C are between 5.4 and 6.1

With diet, physical activity… it used to go down to 5.4 but only once it reached 6.1

In October 2020, it went to 6.5.
Her previous Endo put her on metformin.

We moved to a new Endo in January 2021. In January 2021, her A1C was 5.4 with metformin.

In March, A1C was 5.7
We came to know about GAD 65 antibodies in January.

She is overweight, has darkness around her neck.

So confused!!

I am ready to do anything, take her anywhere to save her.

It’s possible she is both type1 and type2. Once her pancreas gives up the ghost, she will need to go on insulin. At that point it will become more obvious by how much insulin she needs in a day. So I would just keep using metformin until it stops helping.

Testing positive for antibodies is type 1. Type 1.5 is the same thing as type 1 except it progresses a little slower. If the metformin helps then it won’t hurt her to keep taking it but she will be on insulin sooner or later.

Diabetes is not a death sentence and if she has good control of her blood glucose then she will live as healthy and long as her peers. I’ve had type 1 since I was a toddler and don’t have any diabetes complications even though my control was awful until I was in my 20’s.

Losing weight will help take some of the strain off of her pancreas but it will not replace the Beta cells that are being destroyed by her immune system. However losing weight will of course be beneficial in many other ways from increased energy to less risk of heart disease.

Thanks!!

My only worry is how she is going to manage when she goes to college or else can I even send her that far also. Very scared!!!

I am at Joslin Boston which is considered one of the foremost if not the foremost diabetes clinic in the world. I am daibetic. What type? Who knows and really who cares? I was diagnosed over 30 years ago and they still have not been able to type me as I don’t fit squarely into any of their profiles, which has both advantages and disadvantages.

Some diabetics waste months, if not years, obsessing over their type, rather than keep trying different medications, foods, and exercise routines that will keep themselves within a TIR and A1C range they are happy with.

When you come right down to it, diabetes is a DIY issue and what works for one person may not work for another. What is important is to find out what works for your daughter and then stick with it until it may need a tweak in the future. Trial and error with multiple daily finger sticks works but takes a huge amount of work, records, and time and effort to establish and remain in good control. A CGM is a miracle tool that will help your daughter, most likely improve her A1C by an additional at least 1% by giving her real-time actionable data. With a CGM, a third party, either a family member or professional can periodically review her data and help her with advice to get her through the rough spots.

Concentrate on finding a solution that works and forget about what type she is as you may or may not ever know and in the grand scheme of things really makes no difference beyond causing unnecessary anxiety.

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Thanks so much!!

This is my first post in this community.

We are also going to Boston Joslin clinic.
Her doctor said, he is going to order oral glucose test in the next visit.

I am looking for any trails available to see if anything helps her to delay or stop this progress.

Please… please share your suggestions if there is anything we can do delay this progress!!!

CJ114

Could you please give me some more details of your case. Do you also have antibodies? And insulin resistance? Are you on insulin or oral medicines?
At what age, they diagnosed you as a diabetic.

As my daughter’s case little confusing to endocrinologist also, I am trying to see if there is anyone else like her.

Please respond

Joslin stopped testing me at least 5 years ago after last c-peptide and they were convinced I was MODY, but since no diabetes in my family except for perhaps grandfather, and no diabetes in children, or grand children they could not pay for the MODY testing but I was still curious so paid out of pocket for the genetic testing and I had none of the MODY markers. At that point we all decided to just stop trying to type and just deal with the issue.

I was diagnosed at age 41, more than 30 years ago and since I was am slim at 5ft 8" male, 125 lbs type was confusing from the start. They actually told me that I looked most like a type 2 but they would treat me as a type 1.

I am on fast acting (MDI Multiple daily injection) Humalog (bolus) insulin only which I use to pre-bolus for my 1 meal a day at lunch. I used to be on Lantus (basal) as well as that is pretty standard procedure, but until I got a CGM and could positively prove that the Lantus was causing me nighttime lows every night, my endo kept prescribing it for me. Once I gave up the Lantus, diabetes management became much. much easier.

For the past few years, I have been on a low carb diet, mostly but not always high fat. This has worked for me to stabilize my BG and A1C. I range my A1C between 4.8 and 5.4 and at 5.2 allows me a great variety of foods.

You can send me a private message on this board and I would be happy to give you my email address there and phone number if there is anything you feel I could help you with.

With the tools and medications we have available today, there is nothing to fear, although I do understand handling diabetes socially through the teenage years can be a real challenge for both the parents and the child.

There are a lot of individuals on this board that are willing to share their experiences and you can pick and choose what you may want to try.

Welcome to our community - We have all learned a lot on this forum and as a result of sharing our experiences have been able to get better control of this scourge.

A Continuous Glucose Monitor (CGM) will make your life and your daughters life easier and safer. Going to college and living a full life is completely within reach. Look up Michelle Lord on Youtube. She has been a type 1 diabetic since she was a teenager and has gone through college all the way to a PHD and is expecting her first child in the next few weeks. She gives lots of advice and is very inspirational on how to live life to the fullest with T1D. CGM makes all the difference in control and safety as it alerts the user when you are going out of range and with Dexcom Share you will get alerts sent to your cell phone as well.

Type 1, Type 2, maybe both, at least indications of both. I have always understood that the presence of antibodies means Type 1 and I would say a T1 diagnosis trumps a T2 diagnosis. I cannot understand why she has not been tagged as a Type 1.

It is possible that she is slow onset Type one with insulin resistance. Insulin resistance is not often seen in Type 1 because of the attention to diet that T1’s maintain. It is pretty much mandatory when using insulin.

I wonder if her father has ever been tested for antibodies or if he is on insulin. Who knows there may be something in the family genetic makeup.

Her father is a type 2 since the year 2004.
He is never on insulin. He is managing very well with diet, exercise & oral medication

There shouldn’t be a confusion over what type with a positive antibody test. Maybe try asking the doctor directly that since the antibody test is positive can she put down an official diagnosis, explaining you need it because you’d like to enter her into a trial with Yale, but you need the diagnosis to do so? If she is not sure for some reason, you could also ask her why wouldn’t she be a type 1 with possible insulin resistance since she has the antibodies. Metformin is used by type 1’s a lot when they are insulin resistant. Being labeled a type 1 also helps with insurance because they are more likely to cover CGM’s and pumps as a type 1.

I am wondering if some of the confusion is while 5.4-5.9 isn’t bad, it is considered prediabetic a good deal of the time. That could be because she was becoming insulin resistant, a type 2 trait, maybe inherited and happening first back in 2015? A pedi endo probably doesn’t run across slow onset in that young of an adult often, it’s not common. So maybe they are hesitant wondering how she managed without insulin for so long? But I am wondering if maybe she was already becoming insulin resistant, the type 2 trait that runs in the family before she got type 1 ?

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Thank you!!!
I will definitely ask doctor.

I do not know if Trial-net operates in Canada, but if so I would get to them right away. They have a nice arm working on delaying T1. They may have something for you or know who might.

https://www.trialnet.org/

I live in Rhode Island, USA
Thanks for your response