Needing support and community

I am 24 and I am still fairly new with T1D. My doctors have all told me that for a new diabetic, my blood sugar range has been phenomenal, however I am always finding new things going on with me such as anemia, hair loss, PE and high cholesterol. I’ve been finding that my friend group just can’t seem to understand that I can longer do the things I used to be able to do and I’ve been extremely overwhelmed with my health and with the cost of my medicines and equipment I need for my diabetes. I find myself getting tired quicker than before and needing to take breaks more often because my energy just isn’t what it used to be. I’ve noticed that I am not invited to their outings as often as I was and if I am, there are always side comments about how I’m always tired and that I am always saying no to outings that are expensive. My husband is a great support, but often times I’ve noticed that he just doesn’t understand why I can’t do things like I used to anymore. I feel very isolated because of my diagnosis and I feel very burned out from everything. Is this a fairly common thing to experience?

Hi @kfinke and welcome to the forum. You’ll find plenty of support and suggestions of things that have worked for others with Type1 that you could discuss with your doctor.
A new diagnosis takes a lot of of you emotionally, not to mention the physical part. Some people find it helpful to sit down with a counselor to help them navigate the “newness” and learn to adjust. There may be local groups in your area where you can connect perhaps in person with others with Type1 so you won’t feel so alone.
I’ll stop right here and say I got my 50+ year Joslin medal recently - I’ve had it for a long time and am doing well. So congratulations on your phenomenal numbers and keep up the good work. Lots of people have issues with cholesterol and anemia. They’re not necessarily related to your diabetes, although that tends to be our first thought. If you haven’t had an overall physical recently, get one. It may be that some food changes, supplements or treatments will get you feeling as well as you used to. If you see a dietitian for your diabetes let them know so they can give you guidance.
I understand you don’t feel like you can do everything you used to. Hopefully as things adjust you’ll find yourself getting back into them. Granted, taking a weekend trip will require making sure you have your kit ready but you’ll get used to it. I take a number of meds and keep them organized on my kitchen counter. If I’m going somewhere I toss all the bottles and my pill organizers into zip lock bags for day and evening, and I make sure to grab my diabetes supplies.
As for cost - sadly it is what it is. My suggestion is, when open enrollment rolls around, start early and research which plans best fit your budget. Engage your math mind as you consider premiums vs deductibles vs co-pays. An insurance broker may be able to help you navigate that. Sadly at some point in life most people need to do just that, although you’re starting a little earlier. But it’s something you can learn and your husband will help you out.
Hopefully you’ll hear back soon from people in your own age group - I’ve seen quite a few on here and we’re all here to support each other. Keep taking care of yourself and let us know how you’re doing - and if you have any suggestions please chime in!

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Hi Kfinke, just to follow up with wadawabbit, because underlying emotions are invisible it can be hard to relate the fatigue to it, but you’re probably processing the fact that you have type1 more than you know. Sometimes there can be a grieving process. Not sure what your experience is, but it might be helpful to talk to a counselor. I don’t know what part of the country you’re in, but some Diabetes clinics have their own social workers/counselors, maybe that’s an option? I don’t have Diabetes myself; my daughter was diagnosed at age 4 and is now 15. I hope that when she’s your age she has a group of friend’s with Type1 because I think that type of support/conncection would be invaluable. In general, having Type 1 has not limited her in what she can do socially or sports. Of course it just means she has to manage herself and always has to have her supplies on hand, and can’t go crazy with quick carbs etc… Once in a long while she becomes more insulin resistant temporarily due to hormones and high blood sugars do cause fatigue, but it sounds like that’s not something you’re dealing with. Acknowledging your light.

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yes, I would think that post trauma stress is universal with a T1 diagnosis. I can tell you that for the past 20 years up to right now, I have energy levels consistent with (or above) active adults in my peer group, but I have had 42 years of type 1 to come to terms with it and to accept it. So, low energy is likely NOT directly related to everyone with Type 1, while type 1’s do have a high incidence of depression, it is not “Fait accompli”. I urge you to talk about these feelings with the forum and with your doctors. If you like to learn at your own pace I highly recommend the book “Think Like a Pancreas” Welcome to the community! good luck!

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Piggybacking on what others have said, you might ask your doctor about your symptoms, and see if something else is going on besides diabetes. Autoimmune disorders sometimes appear together — people with T1D are more likely to have celiac, Graves, rheumatoid arthritis, Lupus, and other autoimmune disorders than people who don’t have one autoimmune disorder already. Not wishing it on you, but it’s probably worth asking.

And yes, we are 100% here for each other. This is an incredibly supportive online community, so even though what you’re experiencing sucks, please do keep posting. We’re glad you’re here.

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Hello Kara @kfinke! I was diagnosed with type 1 diabetes in March 12 of last year. My blood sugar was over 800 and my potassium level was “ pretty much nothing” to quote my doctor. I lost half of my hair two months later and it took my body 3-4 months to recover after my diagnosis. I slowly got my energy back. My hair eventually regrew-although the new hair is curly like my grandmother’s-very frustrating. So, I would just recommend you get a lot of sleep and don’t push yourself. Exercise is really good for you, but I would just do some power walking around the neighborhood for now. Let your body heal. I hope this helps.

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I assume your endo has checked your thyroid? My experience: when I was first incorrectly diagnosed T2D (@40yoa) my GP didn’t know to check thyroid - then when I made them check GAD I was sent to their “diabetes” doc and was immediately given thyroid - but it wasn’t until I left him and went to an endo that I finally got the req’d synthyroid dosage (the endo doubled what the diabetes doc would give me!). Finally getting that correct dosage made a huge energy difference for me.
I echo srozelle that your T1D may be the tip of the spear.
My point is get the correct thyroid dosage, but moreso educate yourself. You need to be your best advocate.

Yes normal. It’s tough mentally, and that may be having an affect on your energy level. T1D doesn’t necessarily cause loss of physical energy levels/strength/etc. There are professional athletes w/ T1D. So there may be other issues going on as far as tiredness, including maybe just the mental stress of processing everything, which I completely empathize with.

I was diagnosed 13 months ago, it’s been very difficult psychologically. I’ve gotten a lot better now in that respect, though it still get me down at times. But unfortunately I have other health issues as well. I too have high cholesterol as well as statin intolerance - if this is an issue w/ you, or if you’re on statins and think this may be affecting your energy level/muscle strength, you could try Ezetimibe. That’s what I’ve been taking and haven’t had any side effects.

I also had Grave’s disease as a kid, and so now have hypothyroidism since my thyroid was oblated. I have to take levothyroxine e/day and get my levels checked about once a year. So as others suggested, see about checking your thyroid levels.

My other health issue is hypermobile Ehlers Danlos, which is effectively disabling due to chronic neck pain, exacerbated by stress and physical activity, which is majorly depressing. I love walking and hiking and doing physical activities, so it’s really tough. Now that I’ve gotten more used to dealing with diabetes, I now find the Ehlers Danlos issue worse - I’d trade it for T1D in a heartbeat, and that’s saying a lot.

So in sum, no you’re not alone at all, and your experience with all this stuff mentally is totally normal. I’m not sure I have any useful advice other than try to focus as much as possible on the positives, and continue as much as possible to do things you enjoy to the extent you’re able to. Having a supportive partner is huge. Maybe try empathizing w/ his not understanding sometimes why you can’t do things as you used to for right now - “yeah, I don’t get it either, it’s frustrating and confusing for me as well, I can’t understand it, but I’ll keep doing the best I can. I’m glad you’re my support system.” Responding in some way like this may help reconnect and so help w/ that sense at times of feeling isolated. But know that it IS likely temporary, as long as you keep working at trying to do what you enjoy as much as possible, and maybe seek out potential other causes w/ doctors/bloodwork, focusing on positives, getting more used to dealing w/ T1D, and reminding yourself how well you’re doing in managing all this stuff.

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Lack of energy can be caused by too many things. It is great so many here have offered helpful ideas to look into. Nothing is gained until your questions get answered. I run out of energy when approaching hypo- or hyper- glycemic states. Lack of useable glucose translates to nothing available to be used as fuel or energy.
Diagnosed in 1969 my views are likely tilted.
True friends never let my T1D affect our relationships. The best friends learned how to identify & treat hypoglycemia back when it took 6 months to receive lab blood test results (1970s). I was never hesitant about sharing what I was learning with those I was close to. You are now a source of useful education to your peers, may they gain respect for what aT1D does daily to exist.
The more you learn of how your body behaves under various influences (more exercise, slight dehydration, menstrual issues, negative emotions, a taste of something sweet when willpower fails, the thought of finishing a project after a bit of lightheadedness is sensed, a physical workout affecting (your) blood glucose level for how many hours/days, devoutly following advice from ill trained professionals, a wrong guess of the amount of carbohydrates in a friend’s or restaurant’s salad, a period without exercise, sick days, too little sleep, getting a new puppy…) the better understanding you will develop for how YOUR BODY NEEDS to be treated. No one promises easy, but we can survive if we continue to pay attention and learn from our own actions. “A wise man learns from the experiences of others.” The peers you want to maintain will not be offended when you need down time. They will understand that T1D is a condition that requires food modifications. They will let you dance slowly to fast music.
For me the tone of my voice changes when my glucose level falls. When my late husband noticed this he would tell me “(I) need sugar,” and proceed to dissolve a teaspoon full in a small amount of water (then persuade me to sip it). When he sensed my blood sugar was dropping his line was “we need to do a test.” Loved ones get too much dropped on them until it is realized how much more is shared when both are looking through the same rosey or clouded glass. Best wishes to you an your loved ones. It does get easier as more experiences are gained, more trends are identified, and more questions find realistic answers.
As old as I am I got to experience dozens of rock concerts, meet hundreds of people, engage in various educational experiences, and enjoy a wonderful marriage all while living with diabetes. Experience and education are keys to life, with or without medical conditions. I am confident you too will learn lots and thrive.

Excellent point about peers. Back before CGMs there were times friends noticed certain possible signs of lows before I noticed them myself - glassy eyes were something someone else invariably noticed before I did.
And it seems others often take their cues from us - whether it’s diabetes or something else, our own attitudes about it are often transferred to our friends, so if we come across very negative they pick up on that and behave likewise, while if we treat it as a part of life we make the best of, they do to. At least that’s what I’ve found.