Diagnosed 3 weeks ago can't see doctor/educator and lost

Type 2 & MODY New T2/MODY
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Hey folks
So I am 39, male, and confused.

I was diagnosed early-july during a checkup with my doctor with a pre-meal morning blood sugar of 362.
When I got the labs back I was shocked but not surprised as my entire family before me had T1 or T2.
My PCP put me on metformin 500mg 1/day then 2/day and now we are up to 2x twice a day. I also was set up with a meter and testing supplies.
I have an appointment with her on August 19th as a brief check-in and an appt with the diabetes educator to work out a meal plan/target numbers etc in late September. I can’t make other appts until the numbers are under control apparently so that’s neither here nor there.

I am very lost. I have googled and binged and even Yahoo’d and changed my diet 100%. I used to eat garbage mostly. Not sweets, no sugared drinks, but carb-heavy meals, pizzas, lots of pasta, more eating out than I should, and lots of processed/canned foods.
Now I eat a lot of air fried chicken breast (Sprinkled lightly with parmesan and some breadcrumbs), lo-carb wraps with semi-low sodium deli meat, and for breakfast rolled oats with some berries and poached eggs. I started eating almods and cashews which I thought I was allergic to previously.

I’ve managed to keep my readings down to the 100-175 range daily in the last week now, but have been dealing with drops down to the 65-80 range within an hour of being 180. This causes immediate onset of low blood sugar symptoms. Thankfully I haven’t been above 210 since the first week.

Here’s my questions for the community:

  1. My vision has been giving me a hard time by being blurry suddenly now that I am on metformin. I was told by the nurse that this sometimes can happen while the body adjusts to running at a lower blood sugar baseline. But in the meantime I am dealing with constant shifts and uncomfortable reading. How common is this and are there any solutions? I wear glasses as is, but they only help me at mid-range now, but somehow my long-distance visions is better. My close up small text vision is shot.

  2. How can I come up with a decent-ish meal plan in the meantime? I have an extreme difficulty eating most veggies as I grew up deathly allergic to them (I was put in the hospital over Carrots, lettuce, broccoli and other things I enjoyed, only to learn i had many allergies) I have grown out of them but my body makes me gag or reject them completely if not in soup or something…of course that is high in salt.
    I’ve been eating a lot of protein and avoiding any and all fast foods, thankfully I don’t get cravings but I find it very difficult to eat while at work or skipping a meal completely if I am at work and only have the option of ordering out. Ideas?

I don’t know where I am supposed to be in my own blood sugar range, nor do I know how I should feel or how paranoid I should be. If people get food out, how careful do I really need to be. I can’t get a salad because I’d rather not make a mess on the floor, but also I’m not going to have a bucket of fried chicken for example but a piece would be nice as a quick fix.

I don’t like the fact I was basically told “OH BTW You are diabetic, here’s pills, good luck for the next month or two.”

So yeah, ideas, chats, anything?

Thanks for reading.

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Holy crap you have been treated poorly. Unfortunately, this isn’t uncommon. Sorry about your diagnosis, that is a gut punch no matter when you get diagnosed.

Normal Blood Sugar - 70-120 with short excursions above this range for meals. You should try and spend most of your time here, but without a CGM you probably won’t know unless you blood sugar test a lot.

Vision - Anytime you are changing your blood sugar range substantially the eyes can be affected. For my son it lasted about a month before his vision came back. Keep your blood sugar in a normal range and everything will go back to normal.

Meal plan - really this should be a carb plan, because that is what you are trying to manage. In order to get back to eating somewhat higher carb than you have been you need to test before each meal and 2 hours after to see how many carbs your body can tolerate without staying high for more than a couple of hours. Once you have determined your carb threshold, you can meal plan much more easily. How many carbs are you shooting for now?

Btw - Welcome to FUD.

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Thank you for the welcome.

I don’t know what I’m shooting for. I just try and eat whatever I can that has very few carbs in it, and hope for the best. I know I need to watch my sodium intake as well as my BP was higher than it should be but right now it’s felt like a full time job to make sure I actually eat regularly without my usual “have a bowl of rice and some chicken” or a can of something. I’m just guessing for the most part.

On the advice of the almighty internet I’ve been testing first thing I wake up and then ~2 hrs after starting breakfast and randomly if I feel off. Like saturday those readings were 117 and 127, yesterday 108 and 137, and today 108 and 148 (I know I tested a bit earlier than usual after eating today, I was in a hurry). I’ve felt mostly fine except for when I have massive drops.

I’ve just gotten to a point where I feel I’ve hit a food wall where I’m eating literally the exact same food for days on end and it’s a bit frustrating, as I’d enjoy some kind of variety, but all online says is “Have a salad, Have a salad with olives! here’s a tasty salad with steak and seasoning!”

I have a call in to my PCP and the nurse did contact me back but said that “the diabetes educator will go over that when you have your appointment.” and that was it.

I’ve turned to nuts and chicharrones for snacking occasionally as they are low carb options, and I truly feel that urge to munch on something from time to time. I used to eat cheerios for that but now that I look at the nutrition info it blows my mind. Guess no more pop tarts either. The issue is I am still nearly always hungry, or at least snack-y. Shopping is a nightmare now and I pass up most everything and just grab chicken breast to air fry or grill up without any seasoning.

Thanks again and I look forward to learning more with the community here.

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Ok, first things first, low carb snacks Nuts, Cheese, Moon Cheese, Whisps, Olives, Kind Mini bars, Jerky (check label, lost of sugar hidden in many brands), Turkey Sticks, Carb Balance Tortillas, Keto Bread (PNW), etc. etc.

In addition to snacks, you should be able to eat just about any protein you would like, pork, beef, chicken, fish for your meals. Lots of choices.

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Drops will always make you feel off, that part never changes. You just get used to them or you minimize them. My advice would be to increase your testing, since you need to figure out that carb threshold I talked about in an earlier post. i.e. how many carbs can you eat and not stay over 120 at two hours? By testing at every meal and increasing the number of carbs in each meal, you can figure out where you are at now. (It evolves btw, it isn’t a static number forever).

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Good to know, I guess I’ll just experiment with food I like and adjust based on how numbers look.

I really appreciate it, I am going from eating exclusively poorly to trying to eat better for my levels and its a major challenge.

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Totally understand.

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Have you discussed with other family members to see what works for them?

Were any of them initially diagnosed as T2, then switched to T1 ? Its possible you could be in early T1, but this is often misdiagnosed.

A c-peptide test and/or antibody tests could be done, and helpful if family members had LADA (slow onset T1 that often initially looks like T2).

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You said metformin. That’s a treatment for type 2 diabetes. But I haven’t heard why you think you have type 2. Did your physician say that you don’t have type 1? Based on what information?

I see that MM2 got there before I did, so I’ll be more direct.

A physician should diagnose whether you have type 1 or type 2, and that usually involves antibody tests. If your current physician isn’t doing that with a family history of type 1 and 2, I’d suggest that you may need a better doctor. A good endocrinologist could make the diagnosis.

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Well they all passed away when I was younger (born into an older family, my mom was 40, dad 50 and then I was born, dad had 9 brothers and 1 sister, and all are gone now) except for my mom but she has no idea what she has. Assumed type 2. the doctors aren’t exactly concerned with her diabetes at her age and it is one of those things that is pretty low on their priority scale due to other more pressing health concerns.

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Honestly I don’t know.

The timeline is thus: July 16th I went to see a new PCP due to insurance changes and check out elevated blood pressure, she orders labs to see where everything is, I get the results that day for the blood sugar (as posted above, was like 362 and I hadn’t had anything to eat that day and tests were around 10:30am). The following Monday I got the A1C results and they were high. Then I got a call from the dr’s nurse asking when I had been diagnosed as diabetic and I answered “This phone call apparently”.
They had a rx ready for me that evening and I was to start immediately taking metformin and testing “twice a day”.
That is literally 100% of the conversations I have had with my pcp or nurses beyond asking about what I should be aiming for.

I guess we will discuss more tests and such on the 19th when I go in? I have no other information beyond “Take these.”

I assume I have type 2 as I haven’t ever had a high blood sugar reading in the past, and I thought that if it were type 1 it would pop up sometime in the previous 38 years of my existence. Obviously I am not an expert on these things.

I apologize for the long-winded posts but I am quite frustrated with the situation. The soonest anyone can see me is the 19th and then in september for the educator.

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I did want to ask how one gets used to the drops, when my sugars drop around 100pts or so in a very short time I am unable to do much beyond shake and sweat. My vision goes nearly completely blurry and I feel like I have COVID all over again with how broken everything seems. I couldn’t even poke a hole in my juice box with the straw to get some quick carbs last time it happened.

It happened in the past before I was diagnosed from time to time, usually mid-day if I hadn’t eaten much, but never to these new extremes. I used to solve it by attacking whatever food was nearby which I now know is a bad plan.
I am under the understanding they were false lows, probably me going suddenly from a really high number to a “high but not as high” number.

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Hi, @Johner - Welcome to the club of diabetes mellitus. I was diagnosed as type 2 DM 30 years ago. I want you to know that even though it has progressed requiring more intensive treatment, I have one minor spot of retinopathy in my right eye that is stable and not getting worse for about 5 years. I have no other diabetic complications.

You have a lot of questions because you weren’t given prompt consultation with a certified diabetes educator. It sounds like your doctor has assumed type 2 diabetes mellitus, but based on what, an elevated fasting blood glucose test? What about an HbA1c test? this one gives an indication of BG control over 90 days. There are other tests to either rule out or diagnose autoimmune diabetes, type 1 DM.

I want to commend you on your efforts so far. A family doctor cyclist I know has a hard time getting her diabetic patients to understand the seriousness of their condition. They just want a pill and be able to go on as usual. These are what the medical profession calls non-compliant patients. The problem is really common in type 2 DM because often there are no symptoms until a massive heart attack or peripheral neuropathy causing numbness and pain in the feet.

For quite sometime you have had elevated BG levels. Our bodies tend to adapt, so when BG drops but is still higher than normal or in the normal range one can experience the symptoms of hypoglycemia. I call these false hypos. Also the unstable BG rising and falling will cause blurry vision.

Metformin is not prone to causing hypoglycemia. It reduces glucose release from the liver and increases cellular insulin sensitivity. Insulin has several duties, one of the main one is attach to receptors on cells that want glucose (fuel). This acts like a metering gateway.

The combination of metformin and carb restriction is beginning to bring your BG closer to the normal range. Your body will begin to adapt to the new normal.

I’m getting on my soap box now, Johner. There needs to be a comprehensive plan for any type of diabetes management, but for sure with us T2DMs.

A carbohydrate restricted diet that eliminates all simple carbs, such as sugar, high fructose corn syrup, rice, potatoes and baked goods made from highly refined grain flours. Complex carbs such as beans and whole grains need to be reduced. Use your meter to learn what foods work for you. Nuts, avocados, butter (not margarine), and various vegetable oils are fats to add to your diet. I don’t advocate eating huge amounts of protein, best less than 100g daily.

No where in this thread did I see exercise mentioned. Find an exercise that you can do daily. For me that is bicycling. That works for me because I love it. Iove the cranking up hills and descending fast, I love the wind coming and going or side winds causing a little dance, I love riding solo or with a group, well, you get the picture. I also do whole body strength workouts twice a week as cycling is not a whole body workout. Try brisk walking. I just heard a piece on the radio Sunday that walking is what I bodies were designed to do best, we can run or swim OK, but walking is the most efficient.

Stress, unresolved chronic stress is a major elevator of blood glucose. Find someway to relieve stress in your life, meditation, quiet reading, yoga that emphasizes body, mind and spirit connection. That walk can do it as well. Don’t wear ear buds, but open all five senses to what’s going on around you as your feet carry you on.

I mentioned this with food, testing, the use of the glucometer is one of the best ways to know what’s going on with blood glucose. It is how we learn how food, stress, exercise and medication affects us. We are all similar, but also individuals. What works for one may not be best for someone else.

One last thing, learn to log your meals, BG readings and exercise. There are apps that can help with this, but pencil and paper are just fine.

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That is not proper diagnosis or treatment. I’d suggest finding an endocrinologist, or a PCP who routinely treats both types of diabetes. If that’s not an available option, you need to at least get the antibody testing for type 1 when you see your current PCP on the 19th.

That’s not necessarily how it works. For me, type 1 came on pretty quickly at age 52, out of the blue and with no family history. Although type 2 is much more common than type 1, if you look at all of the folks who were diagnosed in any given year with type 1, about half of them are adults. (I saw that somewhere reputable and to my shame I didn’t write down where I saw it, and I haven’t been able to find it again.)

You don’t “get used” to them. When you feel one coming on, you take a little bit of pure sugar to treat it before it gets bad. But now I need to explain, because what CarlosLuis said is very right: if your body is used to a high BG, just bringing the BG down to a normal level can cause the hypoglycemic reaction.

So if I were in your position, if you think you feel one coming on, measure your BG to see what’s happening. If your BG is actually going low (i.e., your BG is dropping below 80) it’s easy to treat with glucose tablets. Start with 3 of them; they’ll fix the problem in under 15 minutes. I get Relion brand glucose tablets from Walmart; they’re $4 for a bottle of 50 around here. But glucose tablets aren’t magic, they’re just the fastest convenient form of pure sugar. You can use any kind of pure sugar but it will take a few minutes longer. Try a tablespoon or two of table sugar, for instance. And don’t be stingy with the BG tests when you’re trying to figure out what’s happening. There’s nothing wrong with taking a measurement, and then 20 minutes later taking another one. The “good kind” is the Contour Next, and the test strips generally cost less than 30 cents each (from amazon or walmart), so for most people they are not a hardship to get. And this is not a prescription item, so anyone can get as many as they want. Walmart has a house brand that’s pretty good and real economical. The insurance company usually will only cover a too-small number of test strips from some brand that paid them the biggest “rebate”, so a lot of us don’t bother with test strips from the insurance.

I’d like to second the recommendation from CarlosLuis to keep a log book of what and how much you ate, how active you were, and what your BG was before eating and, say, 2 hours after you started eating. That way you can see what’s happening and learn cause and effect. Don’t think about an individual BG number, because this isn’t a pass/fail kind of thing. Think about pairs of them: my BG was X, then I ate a bowl of cereal and went for a 20 minute walk, and 2 hours later my BG was Z. That’s how you learn what effect the food has, and it’s really useful to learn this for any kind of diabetes.

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It is unfortunately just a feeling that one learns to live with, it always feels like the flu for my son, he (too) often has to drop from 250 or 300 to normal levels. I do think you need to test you blood sugar, if you aren’t going low, eating is the wrong thing because it just raises you back to potentially unhealthy levels of blood sugar. Once he gets established at the lower number (sometimes he eats 5 carbs to land it in a good spot) he feels better.

So in summary - if you are dropping from 200-100 and aren’t going to go low, then eating is the wrong thing. If you are going from 180 to 50, eating is the right thing. You unfortunately, have to learn to live with the feeling. The good news is as you dial in your treatment it will happen less often.

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Thank you for your detailed response. (Thanks to @CarlosLuis as well, this is very valuable input to put in to practice)

Re PCP/Endocrinologist: The only option I have right now is to wait until the 19th and talk to my PCP, according to the nurses I have spoken with, she has to refer me to any other treatment.

I have not really been food journaling because for the last 3 weeks now I’ve basically eaten virtually the same meals save for a few dinners here and there to try and get my numbers lower. Breakfast - oats and some fruit with poached eggs (no salt, no extra sugar), Lunches are usually deli lunch meat in a Tumaro wrap with spinach (I can keep it down this way), dinners are a chicken breast with some chickpea or whole wheat pasta. sometimes with no sugar added sauce.

Snacking has been chicharonnes, almonds or cashews, lightly or no salted. This has caused some issues with my gut as I don’t think my body knew how to handle nuts after decades of none.

I really am afraid to venture out into more “normal” foods, because I feel like the progress I have made will be lost. Like the idea of a bowl of cereal or a sandwich on pumpernickel sounds tasty but that pass/fail mentality worries me. Like I won’t even touch a piece of thin crust pizza or anything at this point, and the constant worry of “what is safe to eat” is a big source of my anxiety regarding the diagnosis and somewhat all-consuming in my mind, so I retreat to the same foods over and over.

Stress is a major factor for me, I have severe general anxiety disorder+ADHD (waiting for a dr to become available to get in and get treated again, but it looks like 2022 will be the earliest I can get in to talk to anyone) so I have no doubt that is messing with my numbers.

This seems cyclical I am sure, but trying to find food that is outside my current comfort zone is very anxiety-inducing. I spend an inordinate amount of time reading labels, putting stuff in my cart (Low carb popcorn, Keto-type foods as they are low in carbs-ish) and then stressing myself out and putting them back…the pricing doesn’t help things either.

Thanks for the heads up on the walmart testing strips option,turns out I am actually using Contour Next and I think they were $15 with insurance for 200?

I really do need to exercise more, since starting treatment even walking more than usual has left me feeling somewhat woozy, and I haven’t checked BG to see if there is a correlation, so I will test more frequently.

I wish I could get in and have a game plan or something about how to count carbs and target X carbs per meal so I know where to budget. I’ve read online that 45-60 per meal is good but that seems like a lot. I have been eating much much less carbs than that, maybe 20 or so per non-breakfast meal. Breakfast seems to be around that range and my numbers are pretty steady, with a notable rise but not quickly. (usually about 30pts after 2hrs compared to waking)

Again thank you all so much for your time, it means a lot.

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That is great news. Try to get your doctor to increase the prescription to cover a larger number of test strips per day. Even if you are type 2, it is helpful to have enough strips to try cause-and-effect experiments a few times per day. Back before I had a CGM I was measuring 8 times per day, and some folks do much more than that.

The feeling is understandable. The antidote is measuring the BG. Measure before you try a modest amount of some food, then 2 hours later and see what happened. If you like the result, you can choose to go a little bigger next time. If you don’t like the result you can try a smaller amount, or just move on to the next candidate. If you are type 2, this will be an ongoing strategy.

But if you are type 1, strenuously limiting the carbs will ultimately be futile, because the body converts a portion of the eaten protein and fat into glucose anyway. (The body needs to use glucose, even if you don’t eat carbs, so the body has alternate ways to make it.) I eat plenty of carbs (typically 150 to 250 grams per day) and inject the amount of insulin that my pancreas would have made if it still had the ability. Others prefer to reduce the carbs somewhat, because smaller carb intake means smaller amount of insulin dosing needed, so insulin dosing errors will tend to be smaller.

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Well I did this tonight as my kiddo and I were at an event and couldn’t get out to eat anything but there was free pizza from the local pizza place. I said well let’s do this. I tested at 109 and had 2 small sized hand-tossed cheese only squares and the sausage from a hot dog. two hours later, my BG was 112. Successful test I suppose. I don’t plan to eat this way often but after reading yours and others’ advice here I just have to experiment with whats out there. This kind of broke the ice and made me feel more confident. Thanks, it feels less hopeless. I’ll be sure to ask my PCP about more testing strips on the RX because I think testing aggressively will almost gamify it for me and encourage me to figure out where I am.

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Great to hear you had a breakthrough. That is indeed a good test, and I am glad you are starting to get a handle on things. This disease is rough enough, without your medical team providing education.

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Is there any way you can find another doctor who might be available sooner? I’ve never used OneMedical, but it looks like you pay $200/yr and get “same day/next day” appointments. Perhaps that would work, or perhaps there are similar things that are available to you.

Or maybe something along the lines of Teladoc? Their website says:

Don’t wait weeks for an appointment. Our doctors, therapists, and specialists can help you with the flu, infections, anxiety, stress, skin conditions, and provide advice on serious medical conditions. No matter what you’re facing, we’re available from wherever you are by phone, video, or app.

and:

Teladoc is often made available to you through your employer or health plan. Set up your accountnow, and we will confirm your eligibility. If you aren’t eligible for Teladoc through insurance, you can still access select Teladoc services at a flat rate per visit.

(I haven’t used Teladoc either)

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