topic Depression and Type 1 Diabetes? in Depression

Depression and Type 1 Diabetes?

felix mendelssohn — Sat, 04 Apr 2020 03:49:44 GMT

Hi there anyone and everyone,

I was just wondering whether else here either has, or has a close connection to somebody with, both type 1 diabetes and depression? From doing a little bit of research it seems that depression is much more common in type 1 diabetics than it is for the general population, but I'm not sure why, particularly given type 1 diabetics are often in good health for many years pre and post-diagnosis. So the first question I guess is why does depression seem to disproportionately affect type 1 diabetics? People talk about the 'burden' of having to manage it 24/7, and how it can get in the way of socialising for children and teens, but surely there are much more restrictive conditions than diabetes in this regard? My hypothesis so far would be that the fluctuations in blood sugar must cause some cascading effect on body chemistry, ultimately resulting in depression? Particularly the incidence of hypoglycaemia is something that I would imagine to have a strong correlation with depression.

The destructive loop of depression --> leading to poor diabetes control --> leading to general ill-health --> reinforcing depression is fairly intuitive to me, but it also makes me feel pretty hopeless. What hope do I really have of ever overcoming this?

With regards to day-to-day management of diabetes, I myself find that when I go low I often feel my mood take a turn for the worse (often feelings of despair, wanting to cry etc.). When my blood sugar goes high (hyperglycaemia), I often become grumpy, irritable, disgusted by the world and much more liable to snap. The last few days I've been quite high for no good reason, and I've directed anger at myself for not having better control over the diabetes (this relates to the 24/7 management burden I mentioned before). I'll skip meals as punishment or forgo things that make me happy. And I deserve it, because my depression makes me believe that.

Also, one more thing, I find that there is some stigma associated with life-style induced type 2 diabetes. Of course stigma is unhelpful in any scenario, but it's particularly infuriating that it then gets applied to type 1 diabetics through pure ignorance. It makes me hyperconscious of how people view me and I need to explain myself whenever I mention it.

I would be really interested to hear from anyone else if they have any information, even just anecdoctal stuff, to share on these matters.

Felix

Depression and Type 1 Diabetes?

TheBigBlue — Sat, 04 Apr 2020 05:31:05 GMT

Hey Felix,

I'm type 1 diabetic & suffering with anxiety & depression.

When first diagnosed with the anxiety & depression I didn’t realise the connection. But after seeing a second psychologist we soon discovered a lot of my issues stemmed back to anxieties over my diabetes management.

Do you currently experience issues with depression?

For me personally, I have a fear of high blood sugar. Most people seem to be afraid of the lows, I’m afraid of the highs. It’s gotten to the point where I am so obsessed with the numbers I get angry with myself if my levels go over 7.9. If I see an 8 I freak & have to take a correction dose of insulin straight away.

I started on a CGM last year & having constant access to my levels & constant alarms made me so stressed that I contemplated suicide. Both my endo my educator as well as my psychologist told me to take the CGM off due t9 the distress it was causing. So now I’m trapped in a cycle of constantly finger pricking.
It’s actually affecting every aspect of my life. I stopped dining out because it was too hard to estimate the carbs in my meals, I weigh absolutely every food that goes in my mouth to ensure I am calculating the correct carbs. Even a simple task like walking the dog was causing me great distress. Because I would have to test. If it was on the lower end I would have to eat first & wait. Then fill my pockets with candy in case I had a hypo while out, tell my boyfriend the route I planned to walk & how long I expected to be (in case something happened) & then think about this process before every aspect of your life & it got way t9 overwhelming.

I'm actually going through it right now & it’s the hardest time I have ever had to go through.

Honestly, after 35 years of living like this I cannot cope any more

Depression and Type 1 Diabetes?

felix mendelssohn — Tue, 07 Apr 2020 07:13:49 GMT

Hi there TheBigBlue,

It's both comforting and saddening to see a fellow type 1 sufferer. Yes, it seems like some psychologists (and endos) are very aware of the connection while others are painfully oblivious.

Yes, I am currently dealing with depression, but not anxiety like yourself which is fortunate for me. I can relate to some of your concerns, particularly regarding the impact of even light exercise upon bgls. As much as we're encouraged not to let it get in the way if exercise, so often it just doesn't seem worth the trouble of probably going low, then having to eat and undoing the point of the exercise.

I myself am not anywhere near as strict on myself when it comes to keeping levels in the 4-8 range. I guess I'll suffer for it in the future, but then it's hard to really care about that when you're not too sure that you want to stay around 'til then hahaha

Given you keep your levels so well controlled (or at least try to), I'm interested to hear how you respond physiologically and mentally to abnormal readings?

I'd like to write more but my phone's on 2%!

Regards,

Felix

Depression and Type 1 Diabetes?

TheBigBlue — Thu, 09 Apr 2020 01:10:58 GMT

Hello again,

It’s a strange situation for me. I’ve lived with the disease for 35 years now, but only started on the pump & CGM last year. Previously I was a bit blasé about my numbers, but as soon as I started using the CGM I began obsessing over my numbers. Even if I was in range but could see the graph was trending upwards I would start to feel distress & want to correct which isn’t always the best option when you aren’t really that high.

i really freak out if I see numbers over 12, if I hit 15 I’m straight in testing for ketones. It’s like an obsession. I just HATE the highs.

its really weird as the lows can cause me annoyance as it ruins my time in range, but I don’t have the same level of reaction as I do when I see a high number. Plus I enjoy eating the candy if I’m low! Ha ha!

Do you use a CGM or flash glucose monitor? Pump or injections? I find my control is a LOT better on the pump, but the CGM just did my head in. The constant alarms if high or low, having to calibrate by doing a finger prick & the numbers always being way out compared to my BG levels was making me crazy! I have never been so sleep deprived as I was the the CGM.
So I’m doing better (mentally) without it for now. My endo is fine with it, she just wants me to be safe as she is aware of my issues with dealing with the stress.

i also found that getting a new endo did me the world of good. She is so dedicated to what she does. I have her mobile so can text her anytime & she always replies. Every week I upload the pump data & she can then access it from her office. So I upload, send her a text, she reviews & then messages me back if I need to make any adjustments. The educator is the same. She also gave me her mobile & I can text her anytime. I’ve never had a medical team do this for me ever!
Im seeing a diabetes psychologist & again the same. I can text or email her anytime.

She is also amazing. Because I had a very bad incident a few weeks back where I just wanted to end it & she still replied to my texts at 2am in the morning & she kept messaging me until she knew I was safe. I can’t believe she went to such effort for me. But on the other side of things, I feel like she is the only person I can depend on in my times of distress. I avoid speaking to my partner, family or friends about how badly I am feeling.

see next post

Depression and Type 1 Diabetes?

TheBigBlue — Thu, 09 Apr 2020 04:55:15 GMT

In regards to diabetes care, I have good days & bad days but I am far from perfect. But I just keep trying as that’s all I can do.
I don’t think people understand how overwhelming it can be self managing your medical condition 24hrs a day EVERY day of your life. Making dosing decisions numerous times throughout the day for your insulin, deciding what/when to eat, calculating the carbs every time you do want to eat, having to eat when you are ill, illness making glucose levels go haywire, the complete disorientation you feel when you have low blood sugar, the fatigue & headaches & endless thirst with high blood sugar.
It would be so nice to have a doctor there doing all these calculations every day for us. But they aren’t. I’m not really sure of any other disease that requires so much self management.

Its honestly such hard work and the mental impact can be quite devastating. That’s the thing that gets me the most. People just say, eat healthy & take your insulin & you will be right. They don’t understand what a fine balancing act it is to actually achieve good numbers. They don’t understand how many different things affect your glucose levels, they don’t understand the stress of trying to estimate the carb count in new foods or how tired you always feel.

Anyway, I think my reply just turned into a bit of a rant, sorry! But it felt good to get it out & know you will understand completely having lived through this as well.

I’m happy to talk more if you like. It’s not often you find another diabetic to share this stuff with!

Depression and Type 1 Diabetes?

felix mendelssohn — Sun, 12 Apr 2020 01:45:42 GMT

Hi again BigBlue,

That's amazing that you have such a supportive team behind you! I only see my endocrinologist 2 or 3 times a year, and a diabetes educator maybe twice a year at best. I do question the point of seeing them, given they'll just make marginal adjustments to basal rates and bolus ratios which I can do on my own if I'm noticing a pattern.

I'm on a pump and do have some cgm but I only use it occasionally, like before seeing the doc/educator or if I'm anticipating a hectic week ahead. I found that when I first started using it I was constantly planning ahead for calibrations and avoiding meals so as to get a more accurate calibration. I also found that when not on CGM I was doing less bgl checks because I'd become accustomed to just checking the reading on the pump. So I've limited my use of it as a result. Oh, and of course it's annoying having another thing attached to my body.

I hear what you're saying about the burden of 24/7 monitoring, and I probably didn't give it proper weight in my initial post. It is an incredible balancing act, and just about everything seems to affect glucose in some way. I guess a positive is that it leads to some appreciation of the interconnectedness of all of our body systems that a healthy person may not have. Pretty weak consolation though.

You mentioned near the end that people don't understand the stress and the tiredness that you feel. How much of the tiredness do you reckon (in your personal opinion) is down to the diabetes itself and how much is fatigue from managing it? I ask this because, looking back, I feel like I lost a lot of energy, vigour and even mental acuity when the diabetes developed, and that these things haven't actually recovered. That could also be partly or totally down to puberty though (I was around 12 at diagnosis)

Take care over Easter!

Felix

Depression and Type 1 Diabetes?

TheBigBlue — Mon, 27 Apr 2020 12:59:34 GMT

Hello Felix,

I made it through Easter no problems. But my partner & I made Anzac Biscuits for Anzac Day & I have not been able to stop eating them all weekend!

i weigh the cookies & calculate the carbs, then I bolus for it, but sometimes my numbers are still way off! Woops!

In answer to your question about fatigue & tiredness, I honestly don’t know how much can be attributed to the disease itself & how much is mental fatigue. I have an under active thyroid as well, so that combined with living with a chronic illness for 36 years I think does play a big part in my physical fatigue.

The mental fatigue for me, manifests in other ways. Like some days I just don’t want to test my blood, or have to count the carbs in everything I put in my mouth. I’ve had times where I don’t test my blood for a few days & just eat without counting, but then the worry of damaging my organs gets overwhelming too!

I had a really bad hypo a few years back, I had seizures & fell unconscious. An ambulance was called for me & I spent a few hours in the ER. Ever since I feel like I have constant brain fog, sometimes I can’t remember the word I’m looking for. I’m sure it’s a result of he hypoglycaemia. It’s gradually improving, but I agree that the disease has had some effect.

i hope you are managing everything ok, am always happy to respond to any questions or frustrations you might have.

Depression and Type 1 Diabetes?

felix mendelssohn — Thu, 07 May 2020 14:43:06 GMT

Glad you made it through Easter

It is great that you're so diligent with it all - I think whatever you put into it to counteract fatigue from the disease is going to be taken out through mental fatigue, so I'm not sure there's a way to win. Interesting and sad about the thyroid - I'm pretty sure (and correct me if I'm wrong) that's a hormonal thing as well, so your endocrinologist would be doubly invested in your treatment probably, which may be good but yeah, overall bad.

Yeah, really do know what you mean - so often I just want to forget my diabetes, like maybe if I don't know that I'm sitting in the 20s I won't feel like I'm in the 20s, but I know it's doing damage and I've got to remedy it.

What you've said about that hypo is really interesting but scary; I've read a fair bit about the potential for brain damage, and that's what I feel lots of the insulin as a psychotherapeutic did back in the day did to people. Just dulled their brains rather than actually helped them. I really hope what you've experienced hasn't done any lasting damage. The ability to think freely and have a decent mind is something I value very highly

I myself have been really high lately, like probably 10% in the normal range, 70% in the 10s-20 and probably 20% above that (!!) and really this has been going on for weeks. I don't know how much if at all this is contributing to all of the feelings I've been having lately, or indeed if the glucose levels are a result of something else happening. It's all too much to comprehend really and I don't actually have a close relationship with my endo like you so I'm not sure what to do about that, and from my experience with him I don't think he actually has any understanding of the interplay. But really I reckon if I sustain these levels I'll probs die in the next 15 years but that's okay because a natural termination would not be the worst thing

Sorry for responding so late, I did see it but have only just come around to responding.

Hope you are well,

Felix.

Depression and Type 1 Diabetes?

lozzalovescats — Tue, 12 May 2020 22:46:39 GMT

hi felix

I understand completely what it's like I am a T1 diabetic as well. It is the worst thing in the world but the greatest because it makes us strong. I am newly diagnosed with depression and it is very hard for my parents to understand. I know what it's like to have highs that last for days and it can be scary but it is very tiring as well. I count carbs to the exact point but it never seems to be right! I get lots of low blood sugars as well and that is scary as well. I am the only person in my family with diabetes, coeliac and depression so I feel very alone. My friends don't understand either. It is important to remember we were given diabetes for a reason, this condition makes us stronger than the average person. I hope you are feeling better soon!

Depression and Type 1 Diabetes?

felix mendelssohn — Fri, 15 May 2020 14:57:31 GMT

Hi there lozza,

Nice to meet you. Yeah it's real tough and the glucose levels can really throw you around. I think mine might be stabilising back to something approaching normal, or maybe something else in my body is stabilising which is making my glucose better? Let's hope it stays that way for a while. If nothing else, diabetes makes us aware of how interconnected our different body systems are.

The coeliac must be a real pain for you as well on top of the diabetes. I know what you mean about friends and family not really understanding things. If you've got any concerns or want to share/vent anything feel free to drop a message here. 🙂

Felix

Depression and Type 1 Diabetes?

TheBigBlue — Tue, 19 May 2020 06:52:03 GMT

Hi Lozza,

My storey is somewhat similar to yours. Diagnosed way back in 1986. No one else in my family had ever been diagnosed with type 1. Fast forward to 2017 & I was diagnosed with Hypothyroidism, then anxiety & depression all in that same year.

interestingly though, after being the only type 1 in the extended family for over 30 years, my younger sister was diagnosed just a few years back. She was in her 30’s when diagnosed. So there’s two of us know, but still no idea where it came from. But I suspect there is a genetic link for us both to have it.

Anyway, we should just vent in here whenever we need to. It’s great to find people who can completely understand the highs & lows (pun intended)

Depression and Type 1 Diabetes?

lozzalovescats — Sun, 26 Jul 2020 12:00:30 GMT

Hi guys

Recently my BGL's have been horrible!! I was feeling off one morning and I had to go to school anyway. I have the CGM and a pump so I wasn't too worried. All of a sudden my levels went up so fast. I went from 6.8 to 33.7 in under an hour. At school, I was miserable and very sore and my friend made fun of me and called me a sook. She is not a diabetic.

I tested my ketones that night and they were 2.1....... very bad

I found out that night there was something wrong with the pump settings and there was some error so it wasn't my fault.

My levels finally came down to a good number so I went to bed feeling ok.

I get up the next morning and my levels have gone up again. Not as high but still up. I still had to go to school.

I felt horrible and sore and I was in a bad mood. I apologised to my friends and explained what was going on to my body. They were ok with it but I have one very toxic friend who didn't care she made fun of me and drove me into a panic attack.

I couldn't breathe or move or do anything for 5 minutes. I have had panic attacks before. I felt so down and my thoughts got dark very fast.

This all happened 2 days ago and it's still in my head. I am ok now but I am still sore and I keep having very bad lows now. My body hurts and when I try to get over it my toxic friend makes it worse. I am trying to cut her out of my life because of all the pain she has caused me in the past.

Sorry, this is long, I really had to get this off my chest.

I hope you have all been well 🙂

Depression and Type 1 Diabetes?

TheBigBlue — Mon, 27 Jul 2020 05:10:52 GMT

Hi Lozza,

I’m so sorry your “friend” has behaved in such a way.

sadly, I have discovered that unless people have type 1 diabetes, they really don’t comprehend what we go through or try to understand. Growing up I used to describe diabetes as the loneliest disease in the world, because I had no one to confide in, share with or who understood.

Today we are a little better off, because we have social media, groups, apps etc that can help. Have you seen the beyond type 1 app? People of all ages living with type 1 diabetes. It’s s great place to ask questions, get advice, share stories about type 1.

Just know you aren’t alone. There’s a few of us here in this thread, we can all listen to each other & hopefully help each other.

You don’t have to answer this question, but I’m curious which pump & CGM you are on? I only started on a pump last year, on the Medtronic 670G with guardian CGM. I love using the pump, but yes, when the insulin flow is blocked & levels sky rocket it can be so distressing!

I hope your levels have calmed down & you are feeling better.

Depression and Type 1 Diabetes?

lozzalovescats — Tue, 28 Jul 2020 12:40:53 GMT

Thank you so much for your reply, I am feeling a bit better now.

I use the Dexcom G5 CGM and the Animas T:slim pump.

The pump is awesome because it is touchscreen and easy to use at school. I will have to check out this app, it sounds really good

Depression and Type 1 Diabetes?

TheBigBlue — Tue, 28 Jul 2020 13:43:24 GMT

Ooo T-slim & dex 👍
They are on my Wishlist as I really don’t like the Medtronic CGM.

yeah the app is pretty cool. It’s just nice to have somewhere to vent & know people will understand & not criticise.

Glad your starting to feel better, sometimes this disease really takes it’s toll on our bodies.

I hope tomorrow brings us all sunshine ☀️