Feeling frustrated and lost!

Good morning!

I am new here and just introduced myself in the introduction post, some of this post is a repeat!

Along with a lot of you I am on a frustrating journey! I am only 35 years old, I am not overweight (BMI 21). I have always eaten a healthy diet and am fairly active. I do not have a strong family history of diabetes. There is no logical reason that I have this disease!

When I was officially diagnosed with type 2 my A1C was 8. They put me on Metformin and that combined with a very low carb diet got me down to 6.5 in 3 months. Everyone was happy, except me! I asked to be referred to an endocrinologist as I believed I fit more with a type 1 diabetic (I had also lost 25 pounds in a year without trying and was still losing weight at this point). I got in pretty quick and she ordered the antibody tests, although she did not believe I was type 1. Those results just came back and were negative. At her advice I started to add a few more carbs back into my diet. I made sure these were healthy carbs and low in GI. Also at her advice I stopped testing as it was causing me stress.

Well I have a routine doctors appointment in a few days. At first I wasn’t going to get my A1C done due to fears about Covid! So instead I tested at home. I was surprised to find I tested at 16 mmol/L! This was after a fairly low carb meal! I tested my fasting the next day and it was 13 mmol/L. So I decided to brave it and go get my A1C, it came back at 8.5! I am beyond surprised and frustrated by this! I have done nothing different, except add back in a few carbs at the advice of the endocrinologist.

What else can I do? What should I be asking my doctor? I feel like I am doing everything right and still failing. I thought for sure the answer would be I was actually LADA, but apparently that is not the case. I eat the healthiest diet of anyone I know. I have three young children (4, 3, and 1) who keep me extremely active and busy (my average steps per day is 12000). I don’t know what else I can do. I wish was I overweight and sat around eating bad food all day. Then at least I would know there was something I could change. But that’s not the case, I don’t need to lose anymore weight, if anything I would like to gain some back. I already don’t eat any sugar, very low carb, high fiber, medium protein and medium fat. I’m now at a point where I am afraid to eat anything (I do still eat but feel bad about it)!

Has anyone else been on a similar journey? Can you share you experience? What worked for you? Should I try switching to something like a keto diet? My endocrinologist did not recommend this, but clearly her approach of adding in carbs didn’t work either!

I look forward to hearing from you!

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Did they run a c-Peptide test and if so, what were those results?

Take a look at a regular poster’s website; she may offer other insight into LADA.

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No they did not test my c-peptide, I guess that is the next test I can request.

Thank you for the link I will definitely check it out!

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@bjared When they test the c-Peptide ask them to test your blood glucose level as well.

I’m recalling someone saying this was an important step in that if your blood glucose is high and your c-Peptide is low or low normal, will tell the physician you’re not making much or enough insulin. If your c-Peptide is high, with a high (edited to add: or normal) blood glucose, it will tell your physician your body is attempting to bring down the high blood glucose by making more insulin, but your body is resisting its efforts.

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I had the same issue and ditched the extra carbs and went back to my 20-25g carbs per day to keep my BG low. I am on a Dexcom CGM so easy to eat/medicate/exercise to my CGM. In order to keep weight up, I went to big box store and bought the 2 lb bags of shelled walnuts and 3 lb bags of whole almonds. I take 1/4 cup of almonds (or walnuts) and pour into a (non-shared) jar of peanut butter and tamp the almonds into the top layer of peanut butter. For a special treat sometimes add a little Reddi Whip on top. Then scrape the combined layer of almonds and peanut butter and eat it right out of the jar. It does not appear like a lot of food but the almonds give me about 200 calories + 200 calories in peanut butter. If you do this twice a day, you will gain weight fast and then can go to once a day and then as needed. Works for me - I have BMI 19, 71 year old male on low carb diet. 5.4 A1C, Avg Glucose 89, standard deviation 20. There are many other options but this is the quickest, easiest I have found.

Thank you for your response! My plan is to go back to very little carbs, as that seemed to work for me last time!

I have actually already been doing something similar for a snack! Basically a spoonful of natural peanut butter! I also often eat a handful of almonds as a snack! I will need to try mixing them together! I also might try adding in some hazel nuts, as I’ve heard they are low in carbs!

I’m glad that you are doing well. It gives me a bit of hope! Do you take any medications?

I was on Metformin and they tested a few other orals 30 years ago for 8 - 12 months and after a year or so of frustrations, got put on insulin. I had such a needle phobia never thought I could do it but endo told me no worse than a mosquito bite and she was right and I never looked back. I did not achieve total control until started CGM a few years back but was always able to keep A1C between 6 and 7 before CGM. Now my main focus is on A1C and Standard Deviation because if my blood glucose rises after a meal, that rise causes my LDL-P small particles to oxidize potentially causing atherosclerosis. I never realized the nexus between BG and the really bad cholesterol particles.

I suspect I will be out in insulin sooner rather than later. I’ve already done insulin when I had gestational diabetes. So I ready know the drill! It’s not the most pleasant but not the worst! My main fear with going on insulin is dealing with the lows! That scares me more than the highs!

Do you still do really low carb even on insulin? My thought was if I go on insulin I can start to introduce back in carbs.

Do you know what Antibody test you were given?

For example my family doctor tested me for Insulin Antibodies and I was negative.

Later my endo tested me for GAD-65 and IA-2 Antibodies and was positive on both.

Also there are some type ones that don’t have positive test to any known antibodies. The impression I get is they don’t know all the possible antibodies to check for.

Still it seems more then 50% of type 1’s test possible for GAD-65.

They did the GAD-65, insulin antibodies and pancreatic islet cell antibodies. All came back negative.

If those are the main tests and they all came back negative then I assume they still treat me as a type 2, even if I relate more to a type 1? I guess in the end labels don’t really matter as long as they can do something to help get my blood sugar under control!

Yes, I do low carb on insulin and I am MDI (Multiple Daily Injections). I only use fast acting Humalog insulin. For many years was an long acting as well at night Lantus/Levemir but once I got a CGM I proved to my endo that it was the basal (long acting) insulin that was giving me night time lows.

I eat a great deal of very healthy carbs after only eating 30 carbs daily for 11 yrs. Now I eat around 275 carbs daily and only take 3 or 4 more units of total insulin. The trick to being able to do this is to eat very little fat. Eating this way greatly reduces insulin resistance.

If you would be interested in exploring this way of eating see The Mastering Diabetes website. It is an extremely healthy plant based way of eating.

I have been a type one for 61 yrs. I am at my perfect weight.
My A1c is 5.1
Welcome to Tudiabetes.

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No antibodies does not mean type 2. If your c-peptide is low or 0 you may still be type 1 with no known antibodies.

If your c-peptide is normal or high that points more to type 2.

Really type 1’s don’t make insulin but if you get it as an adult it can be tricky during the honeymoon to diagnose especially without antibodies.

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bjared: When I was diagnosed 37 years ago at the age of 36, I don’t think they even did the antibody tests and it was assumed that I was T2. Despite being thin when I was diagnosed, I had been carrying an extra 25 pounds on me for four years due to a medication I had been taking, but then stopped, about 6 months before being diagnosed. I was put on oral meds at first, did not know or was not told about bg meters, so I have no idea how well I was controlled. Luckily, about 4 years later, I went to work for a hospital and started seeing a diabetologist, who immediately put me on insulin.

So, I’ve been on insulin for about 32 years and on a pump for 18 years. D is so much easier to control on a pump. I’m able to eat pretty much anything I want (in reason) and am maintaining an A1c of between 5.8 to 6.2 without too many significant lows.

As my current (for the past 28 years) endo says, it doesn’t really matter what type you are. What matters is how well you control it. Going on insulin is not a failure…in fact, it’s often the way to achieve the greatest success.

Also, many people do not know that even if you’re a T2, not all T2’s are alike. Some have super high insulin resistance, and some have burnt out islet cells because of the increased usage. There is no specific test that can tell you how many functional islet cells you have left versus how much insulin resistance you have; and each T2 has their own ratio of these factors. So, for some of us, no matter how low-carb you eat, and how much you exercise, control will not be achieved with diet and exercise and even oral meds.

Let me repeat: you are NOT failing! Your body is just telling you that you need more help than it’s been getting.

Good luck!

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@bjared

It can be very frustrating and reminds me of my journey. I wasn’t skinny, not obese but not skinny and I was misdiagnosed I believe because of that. I even asked to be tested and I wasn’t and just told no you’re a type 2.

I had been a vegan who ate very healthy swam 75 laps 5 days a week in a gym pool, very active and yet my sugars kept going slowly up. It becomes very frustrating when you do everything “right” and it’s not working. In my case I was LADA and with LADA it is like that, it’s a slow decrease of insulin production. So changes in diet, weight loss, added activity will sometimes control it until it doesn’t.

There is more than one antibody test. It’s just most of the time you are positive on a GAD test, so a lot just test that. So you probably need the rest done. But there are a few cases where you will test negative on all antibody tests but don’t end up making insulin. My DE, diabetic educator is one of those. It’s just kind of, we don’t know why group.

The C-peptide test becomes critical because if it comes back low or low normal it is a sign of type 1. If it comes back high or high normal it is a sign of type 2. The C-peptide test can vary with results some as sometimes you can make more insulin etc.

But it becomes invaluable because if you are testing high you know it’s type 2 as your body is making plenty of insulin but it’s not working well. If you test low you are not making enough. There was a study that said only 5% of type 2’s are lacking insulin production. But that only usually happens after a long time of overproduction and the theory is your pancreas wears out. One of the other theories is some might have actually been type 1’s misdiagnosed. They think eventually a type 1 can stop making antibodies because you have nothing to attack anymore. But that only happens after a very long time, years and years. You would have had to been on insulin by that time.

Whether you are a type 1 or not, in the long run more information should be able to help you know how to treat it. And if not, it’s about trying to get your BG’s levels at “right” levels. And you might have to experiment with what works.

Good luck with your journey! I remember the frustration well. I was happy when I was diagnosed a type 1. Not because I was a type 1, but because it explained so much in my case. I then knew what I had to do to control it.

Here is a lists of tests.

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Actually I do not have LADA. Although I was diagnosed in my early 20’s, it was full blown Type 1, not LADA. Melitta Rorty (I don’t know her TuD name) is the expert on LADA and maybe someone will post her document.

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Thanks, @Laddie! I did have the two of you confused.

@Melitta is her name here on TuDiabetes. I found a post Melitta authored about LADA that may shed some light, but perhaps Melitta may stop by and offer some additional information for @bjared

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Hi Bjared: You have had most of the autoantibodies tested, minus the zinc transporter. C-peptide would be a very useful test to determine how much endogenous insulin you are producing. Just because someone is autoantibody negative does not mean they do not have Type 1 diabetes–there may be as-yet-undiscovered autoantibodies, and some tests (c-reactive protein) seem to only be done in research studies. Many, many women who have gestational diabetes go on to develop Type 1 diabetes–pregnancy is “the straw that broke the camel’s back” and pushes a woman over into overt Type 1 diabetes. Dr. Anne Peters, one of the foremost endocrinologists in the world, says that she treats all of her lean patients as if they have Type 1 even if they are autoantibody negative–meaning Dr. Peters starts those patients on intensive insulin therapy as soon as possible (https://www.medscape.com/viewarticle/769988). If I were in your shoes, I would insist that my doctor put me on exogenous insulin as soon as possible. IMO, you sound like classic adult-onset Type 1 diabetes, and if that is the case, being treated as if you have Type 2 is not good. Here is a link to my top ten tips for the newly diagnosed adult with Type 1 diabetes that I hope you find useful. All my best to you!

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Thank you for this information!!

I talked to my family doctor today and she agreed something’s not right! She said she would get in contact with my endocrinologist to advise she fully take me on (after my initial visit with the Endo she released me back to my family doctor because she was satisfied with my numbers).

So I’m waiting on a call back from her. I do plan to ask about the c-peptide test. And inquire about early insulin.

Here’s to hoping someone listens to me and I can get this figured out sooner rather than later!

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Thank you for sharing your story with me! It makes me feel less alone!

I’m going to push for the c-peptide test next and hopefully that will point us in the right direction!