What I wish I'd been told

Type 2
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Since my diagnosis, I’ve spent a lot of time googling answers to questions and reading posts in this forum. I can safely say that my Dr pretty much told me NOTHING. She’s actually my nurse practitioner, and I really like her!! But I feel like she’s done me a great disservice here.

For example, the overwhelming feelings of anxiety, the “faux lows,” etc? No idea. I know the sudden change of diet is going to cause withdrawals (I remember this from doing keto a few years ago), and that getting used to the metformin can cause some feeling yucky.

I can’t help but think I could’ve been better prepared for that aspect? I was just told “these are your numbers, these are my concerns, I’m putting an order in for the pharmacy, I’ll see you January 3rd.” I’d already looked up the side effects of metformin so I thought I knew what to expect, but the other stuff?? Ugh. That and wow, I had no idea having depression increases T2 risk, as does sleeping too much (guess who loves a nice nap?) I feel like I could’ve been doing something about this two years ago.

I’m also nervous I’m developing food aversion because since diagnosis and starting metformin I have very little appetite, though I do I get hungry (even after I’ve eaten). So I’m not eating as much.

This turned into a ramble, sorry, I just feel SO GROSS and I want that part to be over.

ETA I went for a walk just now as it’s sposed to help bring down anxiety/etc and now I’m dizzy. I hate this so much, I feel so terrible

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Take heart! Many patients, upon receiving a diagnosis of diabetes, make significant changes in diet, activity, and outlook. We can’t take this life, or our health for granted!!
When we are “healthy” it’s hard to take any medical advice too seriously. Now you have a more clearly defined task: best wishes to achieve these goals.
Many people on this forum have experienced much of what you describe and share the burden of self care and the need for discovery of what works for them.

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Have you noticed any change in your blood sugar levels since starting Metformin? Are you testing your meals with finger-stick checks just before eating and then an hour or two later?

A decreased appetite is a good thing, isn’t it? This may be a side benefit of the Metformin.

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I check 2hrs after I’ve eaten; I was told to check 4x daily. Not sure how many strips I get per refill/etc.

The metformin can cause decreased appetite, which for me isn’t necessarily a bad thing, since part of my problem is overeating and portion control. It’s just weird bc I’ll also be hungry? Which I want to attribute to my body being used to eating more.

There has def been a change. I was close to 200 in the beginning for morning pre-breakfast check and now it’s closer to 160.

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I encourage you to check all meals in “pairs,” one before eating and one after. That way you have a better idea of what the meal actually did to your blood sugar level. If your strip allowance is affecting your strip usage, you can test breakfast one day and dinner the next.

By the way, test strips are not crazy expensive; they average about $0.30-$0.50 USD per strip. If you can afford it, buy some extras at Walmart or Amazon out-of-pocket so that you can better educate yourself about your glucose metabolism. You don’t need an Rx, if paying by yourself.

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Welcome to the group, I’m sure you are not happy to be a diabetic, but we all got diagnoses or have family member who are. One thing to keep in mind, is some of the symptoms of type 2 diabetes mellitus get blamed for being the cause. Insulin resistance by cell receptors cause our cells to be hungry. This translates into hunger. The fact that the cells aren’t getting enough fuel causes fatigue. Higher blood glucose levels cause our Beta cells to secrete more and more insulin. Since this surplus is not being used for energy, some is converted and stored in fat cells. This is a fairly simplistic explanation of a complex metabolic functions, but it should do.

The poor education is one of my big grips, that as soon as someone is diagnoses with any type of diabetes, they should be referred to a CCDE. That’s a Competent Certified Diabetes Educator.

When I was diagnoses 31 years ago, out heath care was through a system that took care of everything in a wholistic manner. I was prescribed medication to bring my BG down as it was dangerously high. Then can the diabetes education. The 1st was one on one with the CDE, my wife and myself. We were given a tabbed 3” binder with all kinds of information. Then we attended 2 or 3 group classes.

When my employers dropped that option, I was in the same boat as most people. None of my doctors know what the others are doing, and I have doctors, primary care, endocrinologist, ophthalmologist and dermatologist. None of them seem to know what the others are doing. OK, rant over.

You are doing the right thing by joining TuDiabetes. We can learn from one another, and support each other when suffering from depression or burnout.

Right now you are in shock. How we respond to diagnosis is different for every one of us.

I threw the part of binder away dealing with diet. The ADA recommended diet back then was just wrong. It was carb heavy and low fat. I stumbled upon a book by Dr. Richard Bernstein, “Diabetes Solution.” Dr. Bernstein wrote an easy to read book covering a lot of the problems that come with diabetes, regardless of type. His diet recommendations were a very low carb high fat (LCHF).

I followed LCHF for about a year, but personally was unable to sustain it. I think I would have killed for a baked potato. I still reduce carbs and have eliminated all of the simple ones.

The other thing I did was to get back on my bicycle. Daily exercise of at least 30 minutes per day is a wonderful way of decreasing average blood glucose and increasing insulin sensitivity.

As to Metformin, the gastric side effects don’t affect everyone, and some get past it. That’s not so with me, I started taking Metformin around 20 years ago. I don’t really want to quit it as I think the benefits outweigh the other.

I’m going to leave you with a couple of links to Alan Sandley’s blog. You might find them helpful.

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Thanks for the links! I definitely think I’m in shock. This hurdle of settling into a new normal is what’s getting to me – I feel awful. My brain is like a hamster in a wheel, I’m nauseous but I’m hungry, I’m having hot and cold flashes… I know now a lot of that is due to anxiety and faux lows and my body adjusting to the changes. I just want to skip to where I don’t feel like crap.

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Just a note of optimism, I am 71 and I have better health, well being and energy than I did at 40. I do enjoy an afternoon nap :yawning_face:

Edit - It is good to be scared if it motivates you. Don’t be the deer caught in the headlights.

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I appreciate any words of encouragement or optimism, Luis. I’m working on staying positive and trying to remember that I won’t always feel gross.

My dad said the same thing! Part of the reason I’m looking into counseling is to work on the fear/anxiety.

I snoozed a little this afternoon, couldn’t help it after being up so early (ugh).

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It’s funny that you mention the education part of the equation.
I took a class offered by my insurance that covered carb counting and meal planning and insulin dosing etc etc.

Most of that information is outdated now, I wonder what it will be like 20 years from now.

I am required by my insurance to take a 4 hour class every other year. Last time, I went in and stayed an hour. Now covid has likely killed the whole idea.

But the information they are giving is also outdated, but only slightly. Their hand outs have outdated insulins, and pictures of pumps that are no longer available, like Animas ping. It’s so cool because it will get a reading directly from your finger-stick meter. It’s just painful to experience, and this technology moves so fast, I don’t know how they can keep up with it.

I get much more cutting edge information right here on this site, or from researching it on my own. There is another forum like this one on JDRF site too.

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Researchers have found ASSOCIATIONS between depression / sleeping too long and diabetes. They have not shown that these CAUSE diabetes. It could even be the other way round. It seems to me a no-brainer that living with diabetes may CAUSE depression! Also, depression may lead some diabetics at certain points to give up trying to manage our health problems.
Imo sleep is very healing. I wouldn’t fight against it unless you really feel it is stealing your life away. Worth considering, though, whether your sleep is refreshing. There is an ASSOCIATION between sleep apnoeia and diabetes. If you find yourself waking frequently, snoring and choking maybe you could benefit from a sleep test and a CPAP machine.
I do sympathise with your loneliness and frustration trying to cope with all this without much support from your medical team. I wonder how many of us here have the same problem. 90%??? Lucky we have each other!

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I forget where I read it now, I was googling and came upon yet another article, could even have even on the ADA site. It’s hard not to freak out about things like that, when it’s been a part of my life (been medicated for depression for many years). Depression makes me want to sleep fairly often.

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I exaggerated about the 3" binder. (Tried to upload a picture, but hung up processing)
There were several extras having to do with neck and shoulder issues, mall walking and bicycling plus a 2 page type written plan called, “How to Play the Game of Life with Diabetes”
Objectives, 1. understanding diabetes, 2 Normal range of blood glucose, 3 healthy lifestype and 4. prevention of complications.

Then the team - 1. you are the captain, 2. physcians, 3. CDE, 4.dietician, 5, ophthalmologist, 6 physical therapist and 7. podiatrist.
Support players - 1. family, 2, ADA local chapter and 3, community support group

Opposing team - Diabetes.

Game rules - 1.education, meal planning, 3, exercise, 4. medication and 5 Self blood glucose monitoring.

They left out dentist, because this group did not have dentist, but that has it’s own tab in the binder. I took a trip down memory lane with the binder and other associated material Some is a bit outdated of course, but there was a real effort to really treat diabetes as a whole body disorder.

There is no longer any Brazos Valley Chapter of the ADA. The ADA for the region is 100+ miles away now. It is very hard to find a CDE here as well. It’s not like type 1 and 2 DM have just disappeared here. The community has grown exponentially from 2 hospitals to 4 and those have all expanded. There are dialysis clinics and it is not uncommon to see amputees that don’t look like war or vehicle accidents.

I will be making contact with the Houston office of the ADA about why there is no chapter or support groups in our region.

Sorry for the long post.

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I was diagnosed 57 years ago and, at that time, there wasn’t a lot of information available. However, now there is material everywhere. You are doing the right thing by participating in forums like this one but definitely keep in mind that every diabetic is different and no two of us react exactly the same way to everything that happens. Keep track of what affects you and see if it is consistent over time. When something unusual or unexpected happens, see if you can pinpoint anything different that may have caused it. Don’t worry if you get frustrated at times and discouraged when things don’t work. It happens to all of us, even the “long timers” like myself. And relax – you will get better at handling your diabetes over time and with experience. It’s definitely not something you wanted but, on the positive side, it can lead to a better and healthier lifestyle and it is not the death sentence it was in the early 1900s. Good luck!

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Re: outdated technology in diabetes education. 40 years ago at diagnosis they taught me how to sterilize glass syringes and even sent me home from the hospital with a glass U-40 syringe. Which would’ve been appropriate for 60 years ago but not 40 years ago. I only ever used plastic syringes after discharge.

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I got that same. Syringe but it was given to me as a souvenir. I was never trained how to use it and never suggested I use it.
I always used u100 disposable ones.

It’s tough to keep everyone up to date on any disease including diabetes. It changes so fast.

I still have nurses who freak out that my sugar is 80. And when they see my a1c at 5.5 I get questioned if I am diabetic at all or that it’s dangerous to be so low.

20 years ago when I went for my first pump training I had to come off long acting insulin and use regular for a day.
I showed up to this entire day training. And my glucose was 80. And the nurse sort of yelled at me for being so low.
I was all, 80? That s an awesome number.
That was before cgm. That thinking still persists esp with older nurses and doctors. They were trained at a time where 80 was considered horribly low I guess.

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I know that the medical professions require earning continuing education credits in order to stay up to date. It seems to me that too many are seriously deficient in their understanding diabetes. We are in a diabetes pandemic and many in the medical profession lack some basic understanding about how diabetes works.

I’ve been scolded by medical professionals about my typical normal blood sugar levels and it’s hard to conceal impatience with this deliberate ignorance. I had a medical assistant at an opthamologist office last week ask me if I was T1D or T2D. When I responded, T1D, she followed up with, “do you take insulin?” I think any medical professional should understand the basic differences between T1D and T2D.

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Ahh or maybe she was really on to of her game, because newly diagnosed type1 patients are not always on insulin at first.

Of course when you told her how long you had it, it should have indicated something.

It might be a list of questions they are required to ask you.

In either case it’s unsettling to be in there with someone who clearly doesn’t know what they are doing or doesn’t know enough to answer questions or make recommendations.

This is why I only see my diabetes team for medical care. Sometimes they tell me to go to my primary care doc but usually they handle everything.

They see diabetics of all types every day and they are on top of it.

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