I have a few questions about diabetes and lifestyle that I have had trouble answering on my own. I think that most of the trouble has come down to being burnt out, asking a lot of questions that people didn’t know how to answer, and not knowing what resources I can trust.
I’ve had type 1 diabetes for over 20 years. In that time, I’ve experienced a lot of fluctuations that medical professionals couldn’t explain. My A1C has been below 7 for almost two decades. While this is great, it incorrectly implies to some professionals that I have good control. Quite the contrary. My blood glucose levels are between 80 mg/dL and 250 mg/dL when I’m not sick. When I’m sick or on my menstrual cycle, it’s a whole different ball game, and often it’s different every time. On normal days, I often still have low energy and “brain fog.” I don’t want any of this to continue if I can prevent it.
I use a Dexcom CGM and a Tandem TSlim insulin pump. I love the DEXCOM CGM. I chose the TSlim because it can dose smaller units with more accuracy than I’ve experienced with other pumps. I used Medtronic for a long time but found that I experienced a lot of leaks and dosage inaccuracy.
My main questions are:
What have you found is the most reliable source of information on reducing the severity and frequency of fluctuations?
I know there are many sources for fluctuations, but given my attention to detail when it comes to food, it seems like the culprit may be another reason like infection and/or sleep issues (or something else?).
Has anyone on here developed or found a helpful resource for simplifying and managing diabetes on a busy schedule (restocking supplies, insurance, medical appointments, personal care, etc.)?
Have you built a business while managing diabetes well?
How do you keep a sense of self through the emotional fluctuations that often come with highs and lows? I feel like my mood is changing often and that can be frustrating.
How do you keep your energy and attitude up?
How do you treat/reduce brain fog?
Those are my first few questions. I’ll add more later. Thank you for your responses!
You sound very similar to me. Like you, I have had T1D for 26+ years and have huge fluctuations in my insulin requirements. The key word there is insulin requirements. If I didn’t adjust my insulin pump settings on a regular (pretty much weekly) basis, sometimes by huge amounts (like a 50% increase or decrease), my blood sugar would be a rollercoaster during hormones and other times.
I’ve also found a very useful tool in reducing fluctuations for me is eating low-carb. This not only reduces daily fluctuations, but it also makes things like hormones much more clear because I’m more likely to notice that I’m suddenly running at 200 mg/dl since I’m not hitting that level on a daily basis after each meal.
Exercise is another very valuable tool, as long as it can be kept consistent and one learns to adjust their insulin around it to avoid too many highs and lows.
I have a very busy schedule work work, school, volunteering, other activities, and regular travel. I have an earthquake kit packed that doubles as my travel kit (I just take sub-kits out of the big kit, use them for travel, and then replace the supplies and return to my earthquake kit when I get home). I often fill pump cartridges when I have five spare minutes so that when my pump alarms I can just grab it and pop it in, as invariably those alarms go off when I’m heading out the door. After ordering something like pump supplies I’ll activate Siri and say, “Remind me to refill pump supplies in three months.” That way I don’t have to think about it. I put doctor appointments in my calendar (Google) as soon as I make them so that they’re also off my mind. I replace supplies used in my backpack when I get home so that I don’t forget to do so later. I bulk cook on weekends and re-heat meals on weeknights when I have no time or don’t feel like cooking. I bring all my own food for trips (I also have severe food allergies in addition to diabetes), and so prior to a trip I meal plan for each day and decide what I need to pack and buy once I get there.
I was just gonna write that, Jen. She sounds like me…and you. 1. Me; 2. No; 3. No, but I believe it is possible; 4. I don’t think I get a lot of mood flux from D. But, sometimes a cupcake does a lot for morale; 5./6. I’m getting the brain fog lately, but this is new for me. I blame BP meds (thanks to info from Jen), but also general exhaustion from the recent loss of a dear friend. My friend’s mom says it’s going to take a long time for the brain fog to go away. I think I just have to wait it out and reduce stress/demands on my time. Typically, I just get the brain fog if I don’t sleep well/enough. I need a lot of sleep, but I have always attributed that to epilepsy, not D.
Can you explain more about your brain fog? You attribute it to D?
I’m so sorry to hear this. I unexpectedly lost my best friend of 14 years in 2014 and I felt like I was in a daze for months. It still profoundly affects me to this day. I also found it negatively affected my diabetes and allergy/asthma control in the first few weeks when I was actively grieving.
For meals, I reduced carbs, and make sure I also include protein and fats. This makes it easier to match the food digestion and BG rise to the action of insulin via pump. And I’m boring, I eat a lot of the same things each week, including lots of salads, with variations.
Watching dexcom during and after meals, I make quick adjustments to keep in range, using Sugar Surfing techniques.
But a lot of it is trial and error, and knowing (accepting) that doing/eating the same thing with same dose, does not always mean same results.
Hi mohe0001! I’m not sure about the brain fog. To be honest, I’m not sure exactly where it is coming from.
What the brain fog “looks” like:
-Trouble pronouncing, slow recall of names and/or memories (even very recent memories), and slow processing of information until at least 2 pm in the afternoon. I wake up at 7:40 am at the latest. I try to get more than 6 hours and 30 minutes of sleep a night, but I seldom get more than 8 hours of sleep.
My vision is also…hard to describe. It has been swirly (?), kind of like it is when a person is dehydrated, for years. I’ve increased my water intake to 1/2 my body weight each day, plus a little extra for the caffeine intake, but there’s little difference in my eyesight. I always score with “no damage” when I see the eye doctor (every 6 months), so I don’t know the cause. I take a vision supplement with lutein, which is great for eyesight.
Two other things to mention. I was diagnosed with hashimotos thyroiditis at age 11, just three years after being diagnosed with type 1, and I know very little about it. I don’t know where to find more reliable information. I see fluctuations in my mood, but they are correlated with changes in blood glucose, so I find it unlikely that this is just thyroid. My physicians say that my thyroid levels are perfect and that they don’t see any damage. I am thankful, but I don’t know why I feel this way…
One more thing. At age 10 I passed out and stopped breathing due to a severe low blood sugar. I was resuscitated in time to prevent brain damage, but sometimes, I still wonder. I was also raised in an abusive environment.
That said, my life is much more normal and happy now. The brain fog just makes things less…special
Hi MM1! Good thought! My doctors check my thyroid levels annually, but they say that with the medication I am taking, they are stable and that I’m taking the maximum dosage possible. I have hashimotos thyroiditis.
I don’t like this brain fog thing you describe. I think you should explore this further because it doesn’t sound like a diabetes thing. I’m sorry I can’t be of more help. I can only relate to what your describing through epilepsy. Have you ever visited a neurologist?
Just as a note, I’ve lost consciousness from seizures, and we always stop breathing, and as a diabetic, people always think its the cause. But, it isn’t always. It took a very long time for me to get an epilepsy diagnosis. The stars needed to align. I have also worried about the potential for brain damage, but so far so good. My brain is broken due to natural causes, LOL.
Perhaps the diabetics can help - maybe make a hashimotos post, and a seperate brain fog post and see what people volley back. I see that @Cyclinglady has Hashi for 20 years.
Hi truenorth. I apologize for the typo. I meant half my body weight in oz. I weigh 185 lbs. So my goal is to drink approximately 100 oz. of water per day. My doctor and a few physical trainers recommended drinking that much water as a standard.
Hi mohe0001. I haven’t visited a neurologist yet because I don’t know if what I’m experiencing is enough. My other doctors have ignored these symptoms when brought up. I was diagnosed with situational depression because of a very difficult past. Situational depression is not permanent. However, when my doctors see “depression” on my chart and my A1C is 6.9, most evidence that I bring up is ignored. I’ve provided a lot of evidence in the past. They often just try to tell me that it’s not important and move on. I do think they’re well-meaning, but I also know that this is an issue. I also think its unfortunate that a person who experienced what I have cannot bring up what a different person can and get feedback on those symptoms, because I was depressed for normal reasons at one point in my life.
I think that’s a great idea! Thank you for the suggestion. I will do so later today. By the way, the passing out and not breathing was a ‘normal’ severe hypo reaction. My blood sugar was below 20 mg/dL. Luckily, someone had a glucagon injection right there and my mother (ironically also the culprit) was a nurse, so she gave me CPR, glucagon and then juice for good measure. I do agree with another previous post that glucagon is not a lot of fun to take. I haven’t taken it for over 15 years.
When was the last time your thyroid antibodies were checked? You can have very stable thyroid panel results (e.g. TSH, etc), but still feel the effects of having autoimmune thyroiditis. Then there is the possibility of yet another autoimmune disorder. Thyroid, TD1 and celiac disease are the most commonly linked. It is why my doctor keeps an eye on my diabetes, which at this point is TD2. Consider getting tested for celiac disease which can impact your blood sugar by the way you are absorbing your foods.
Brain fog, anxiety, depression, etc. can all be linked to actively flaring autoimmune issues. I have Hashimoto’s, celiac and recently, Chronic Autoimmune Gastritis and I have experienced all those symptoms over the last 20 years.
Hello! Thank you for sharing your experiences. I was heckled for celiac recently but told that I am not celiac, but I have a moderate egg allergy. I took bread and eggs out of my diet and I keep milk to a minimum, since I’m lactose intolerant. I removed major potential doctors and saw an increase in stability.
I will ask my doctor to check thyroid antibodies next time! That is a good thing to remember. I’m sorry to hear about what you are battling with celiac, gastritis, and Hashimoto’s! It sounds like you are doing an amazing job of managing everything.
You may need t3, a lot of docs/ endos dont know how to properly manage thyroid problems. Many people with hashis/ hypo t do better with tsh at 1 or below. I was not converting t4, when I started t3 bg improved. I still need higher doses but I’m having trouble increasing t3. My tsh has come down on t3 but I’m still symptomatic so something else is going on too prolly. Its not perfection by any means but it helped. I have hashis and something like celiac, eliminating gluten, gluten contamination and all grains helped me. Antibodies were the way I was diagnosed although i had to have an argument with my doc to even treat me and he never rold me about the antibodies either. With hashis you go in and out of hyper vs hypo due to antibodies I think. My father has it too, it went undiagnosed for years and caused lots of problems.
Which celiac antibodies tests were given? Not all celiacs test positive to the standard screening TTG. One fact is that 10% of celiacs are seronegative. Some, even have NO symptoms and were typically caught because a family member had celiac disease and they were screened. This is one autoimmune disorder that is definitely genetic. Scientists are working to understand it. They believe if they “crack the code” they may be able to cure all autoimmune disorders.
So, unless you had a complete antibodies panel, tested negative to the genes or had a negative intestinal biopsies, you can not rule out celiac disease. It can develop at any time. My own kid must be tested every few years. I tested oddly. Only my DGP IgA was elevated and I had anemia — no intestinal symptoms, yet my biopsy revealed severe damage. Some 10% of TD1s develop Celiac Disease. Endocrinologists have been advised to screen all their TD1 patients.
Wheat allergies (IgE mediated) is completely different from celiac disease. Celiacs can have many intolerances to food due to intestinal damage due to much Zonulin (gate keepers to the small intestine as discovered by celiac expert Dr. Fasano out of Harvard at Boston). Egg and lactose intolerance are quite common and usually resolve with healing. Make sure you had the proper tests. If you get retested, you must be on a full or daily gluten diet some 8 to 12 weeks prior to blood draw.
Sorry to be so passionate, but 1 in 133 have celiac disease except that 80% of them are undiagnosed! Why? Like TD1, many doctors historically thought it was only applicable to kids! We know better today!
Which thyroid measurement are they using when they say it’s perfect? there are several possible measurements, corresponding to different points on the chain of how your body makes the active version of the thyroid hormone. TSH is made near your brain and tells your thyroid how much of the next step to make. Your thyroid then makes T4, with four iodine atoms per molecule. Something (perhaps your thyroid) then removes one of the iodine atoms, leaving T3. There is one more step, leaving something with a longer name that is the active thyroid hormone. If the one they’re measuring is after the step that’s failing to work well for you, you should get good results. If it’s before the step that’s failing to work well for you, a perfect score on that measurement does not mean good results. Some of the other measurements include FT4 and FT3, for how much T4 and T3 are not bound by something that makes then temporarily inactive. There is also forward/reverse T3, for what fraction of the T3 had the correct iodine atom removed from T4 and is therefore useful for the next step. The actual active hormone is hard to measure, so one of the earlier steps is usually measured instead.
I really appreciate your feedback. I know very little about the thyroid hormone synthesis and breakdown pathways. My current Endo is a nurse practitioner. They only say that my thyroid levels are great. I think that part of this pathway has to be off somewhere, because it’s not just my mood that’s down, it’s memory including name and event recall. I don’t know if there are specialists for thyroid specifically, but I would like to go to one. I will do some research on this. I take 112 mcg three times a week and 125 mcg four times a week, which is supposedly high. They also said that they don’t want to remove my goiter…I’m guessing there is some residual function, but I don’t know. My concern is that the tissue can sometimes become cancerous. That said, like I mentioned before, I need to learn a lot more in this area. Any feedback that you have would be awesome!
Anxiety and stress play a huge roll on your BG, so do hormone levels. Lucky (sarcasm) for us girls, our hormones fluctuate like crazy. All of these factors also play a roll on your mood (tiredness, etc.). The best thing I found, was to literally calculate everything that goes in to my body, what activities I do, and when, how I’m feeling, what doses of insulin I’m taking (and when).
Sometimes you wont see a pattern unless it’s right in front of you. I noticed I always had a high BG around 10:30am. After writing everything down (I use the app BG Monitor) and going over it with my doctor, she told me the highs were most likely from the coffee. Coffee is 0 carbs, but for some reason the caffeine tends to raise your BG anyways.
It’s easier to figure out why your BG is high if you have everything right in front of you
Also, it could very well be your thyroid. Over-active and Under-active thyroids can put a huge toll on your body and BG. P.s. I went to my Endo 1 month before I started losing almost 5lbs a week and she said my thyroid levels were perfect. 2 months and 30lbs lost later, I was diagnosed with an hyperthyroid.
When I went to the hospital they tested me for everything but hyperthyroid. I almost went home thinking I was crazy, until the doctor ran to the door and told me there was one more test he could do-- it was positive for hyperthyroid.
Mcg of which thyroid medicine? There are a few choices for which stage of the chain needs to be helped.
I have not heard of thyroid specialists; thyroid problems tend to be treated by endocrinologists instead. You may want to ask your endo nurse for a referral to an higher level endocrinologist, and information on where to find that one.
Those with hyperthyroid make too much thyroid hormone, and are often treated with radioactive iodine.
