Mounjaro, low calorie intake, major depression and possible Polymyalgia Rheumatica

[sadancer]

Hi all, been a while since my first and only post. I’ve had Type 2 since October 2022 when I was first diagnosed by a doctor whose comment to me was your are diabetic and are gonna die. He was aggressive and completely abusive which left me in a very bad mental state. Never got fully past that intro to the fact that life as I knew it was gone. However, moving on. I’ve been tried with so many drugs, starting with the doctors favourite Metformin, which nearly killed me with all its side effects, moving on to a range of others - all with their own nasty side effects. Add in statins which also hated me and between all these I couldn’t get the blood sugars under any kind of control. Finally my diabetic nurse decided I may be a good candidate for Mounjaro, and after some discussion with the doctors and other diabetic professionals, we agreed. I was removed off all other meds, given Ezetimibe (I have familial hypercholesterolemia) and started on 2.5 Mounjaro. almost a year on, I’m now on 10 Mounjaro, have got my hba1c down to 52 which is more than a 50% drop and a side effect is about 16kg weight drop. I also have an auto-immune disease, the DT2 appeared at the same time … so docs think related. The MJ is truly a wonder for the blood sugar and my diabetic nurse is happy with my progress. We are both well aware this is for life, as my only other option would be insulin and we are both loathe to go that route. Even after a year, my food intake is tiny, and I can’t remember what feeling hungry is like. But our concern currently is my calorie intake is really low, can be well under 800 a day. I‘m struggling as I’m terrified of eating carbs and sugar (my initiation into this world was brutal). I’ve finally managed to get some mental health support which should be starting soon, I hope.

The struggle to eat is real. As I have a high powered job, and travel, I’m constantly having days of no or minimum food since most hotels and venues look at me like an alien when I say I’m diabetic and need food without sugar or carbs. There are sp many different lists of good/medium/bad foods around, but when merged I get kale and water as the only common ground. I drink loads of water daily, but yuck on kale. And since I stress big time over food, I’m almost just giving up and living on fresh air. Added to this, I’ve been getting pain in my shoulders, arms, Hips and pelvis, which may be PMR. Blood tests are currently negative, but apparently can still be this. I am rather a pain in the ass at meds and having rare medical conditions, so this could very well be my latest auto immune disease showing its ugly head. I’m also most likely an adult ADHD, but am in the queue for testing (2 years and waiting).

Sorry, for the long diatribe, but wanted to set the scene. My questions are around how to get more calories a day, should I look at multi-vitamins, and anyone got any advice to just keep me a bit less crazy about all this going on and my constant terror and fear of food.

Thank you in advance.

 

[JoKalsbeek]

Hi @sadancer ,

I'm quite happy for you that the Mounjaro is working for you, after all the misery that went before...! So you're too low on your calorie intake, huh.... That begs the question, where are the fats and protein in this? I know, high cholesterol and all that, but if it's familial I take it it's more a matter of the cholesterol you produce rather than what you eat...? Just guessing though. Have you tried eggs, meats, poultry, fatty fish added in? I don't know if dairy is a problem (it can make some autoimmune issues flare, after all), but if full fat yog is a no-go, maybe try a coconut yog variety? In hotels I check whether their breakfast is a buffet: I just stack up on eggs, bacon, sausages and tomato... Maybe some yog if they have a brand I can tolerate. Otherwise I just go to the nearest McDonalds Google Maps can point me to, and have a breakfast McMuffin or two, without the muffin. Thing is, when you tell people you can't handle carbs and/or sugar and trust them to fix things for you, they draw a complete blank. I'd get offered gluten free bread, mangoes, dates (which I hated long before diabetes anyway), a salad absolutely drenched in honey of all things... They just don't know, haven't a clue where to start... And honestly, with so many sensitivities out there, if I can't keep up with what I can and can't eat, I can't expect other people to. They're in the food/hospitality industry, they're not dieticians. (And even those can botch it when there's a lot on, let's be honest.)

It does sound like you're way down on nutrition at the moment, (almost like a crash diet) but I wouldn't go for a multivitamin as long as you don't know exactly where the deficiencies lie... Maybe get some bloodwork done for vitamins and minerals, because sometimes there's stacking of one thing, and a chronic defieciency of another that needs shots from the GP rather than a pill that doesn't make a dent. Considering everything that's going on, don't guesstimate it, and get tests done to see where everything's at. Then you'll know how to tackle it. Because the joint pains could well be vitamin B deficiency or bone pain due to D deficiency... Lacking certain things can really mess you up, so you need to know what's going on, sooner rather than later. If it's a deficiency of something or other, you can tackle it. And if it's something else, some specialist can get pulled in by the hair to help.

If you are ADHD, there is a chance you could possibly trigger a hyperfocus? You never know what might kick-start one, I just got lucky with mine. Just a bummer that because of ADHD, I also forget half of what I knew. (I'm an effing goldfish!) So I end up with "there was a reason why I shouldn't eat/drink this, but I'll be damned if I remember." (Then if the runs follow a day later, or I'm floored with a migraine that night, I'll know what the issue was, again, haha! Carbs are the only ones I manage to remember, everything else.... I'm not so good with.). Making lists of safe foods and not safe foods for on the fridge might help. Also, if I eat out, I examine the menu beforehand, see whether I can actually eat someplace or just stare at the wall nursing a cup of tea. Research helps, as does taking notes and making lists. It's okay to need reminders.

Hang in there, eh. And I hope you get the help you need, soon.
Hugs,
Jo

 

[JoKalsbeek]

Hi all, been a while since my first and only post. I’ve had Type 2 since October 2022 when I was first diagnosed by a doctor whose comment to me was your are diabetic and are gonna die. He was aggressive and completely abusive which left me in a very bad mental state. Never got fully past that intro to the fact that life as I knew it was gone. However, moving on. I’ve been tried with so many drugs, starting with the doctors favourite Metformin, which nearly killed me with all its side effects, moving on to a range of others - all with their own nasty side effects. Add in statins which also hated me and between all these I couldn’t get the blood sugars under any kind of control. Finally my diabetic nurse decided I may be a good candidate for Mounjaro, and after some discussion with the doctors and other diabetic professionals, we agreed. I was removed off all other meds, given Ezetimibe (I have familial hypercholesterolemia) and started on 2.5 Mounjaro. almost a year on, I’m now on 10 Mounjaro, have got my hba1c down to 52 which is more than a 50% drop and a side effect is about 16kg weight drop. I also have an auto-immune disease, the DT2 appeared at the same time … so docs think related. The MJ is truly a wonder for the blood sugar and my diabetic nurse is happy with my progress. We are both well aware this is for life, as my only other option would be insulin and we are both loathe to go that route. Even after a year, my food intake is tiny, and I can’t remember what feeling hungry is like. But our concern currently is my calorie intake is really low, can be well under 800 a day. I‘m struggling as I’m terrified of eating carbs and sugar (my initiation into this world was brutal). I’ve finally managed to get some mental health support which should be starting soon, I hope.

The struggle to eat is real. As I have a high powered job, and travel, I’m constantly having days of no or minimum food since most hotels and venues look at me like an alien when I say I’m diabetic and need food without sugar or carbs. There are sp many different lists of good/medium/bad foods around, but when merged I get kale and water as the only common ground. I drink loads of water daily, but yuck on kale. And since I stress big time over food, I’m almost just giving up and living on fresh air. Added to this, I’ve been getting pain in my shoulders, arms, Hips and pelvis, which may be PMR. Blood tests are currently negative, but apparently can still be this. I am rather a pain in the ass at meds and having rare medical conditions, so this could very well be my latest auto immune disease showing its ugly head. I’m also most likely an adult ADHD, but am in the queue for testing (2 years and waiting).

Sorry, for the long diatribe, but wanted to set the scene. My questions are around how to get more calories a day, should I look at multi-vitamins, and anyone got any advice to just keep me a bit less crazy about all this going on and my constant terror and fear of food.

Thank you in advance.

PS: about the depression... If you are ADHD, you've been fighting to survive in a world that is not made for the neurospicy minds... I was 4 when I started having a deathwish, was about 11 or 12 when I started acting on it, and had to actively fight thoughts of "I should be dead" until I was 45. I got my diagnosis last year, and all of a sudden, so much made sense. All the blaming and shaming I'd been dealing with, everything went from the assumption my brain was neurotypical. It wasn't. I wasn't lazy, I wasn't stupid, I wasn't underachieving, contrary or a waste of space. My DNA is a mess, but that was never something I could fix just by trying harder. My brain is just wired a certain way, and all the effort I put in to just barely keep myself afloat, other people never had to do that.... When they could put in 25% and do things everyone seems to take for granted, I'd have to put in 150%, and still get disappointing results. And as you know, you can't go over 100%.... So if you're giving 150%, all the time, you just end up sick, sad, exhausted... It's not sustainable, certainly not for decades on end. If you're ADHD or any other "brand" of neurospicy, that's the first thing you really need to learn... None of it is your fault. It never was. What works for others doesn't work for us. So try not to force it to. https://www.adhd-love.co.uk/ might help some... Their books, Dirty Laundry and Small Talk really made a difference. Again, provided you get diagnosed, but if you're willing to sit on a waitinglist for 2 years, well... You don't start that journey lightly, I don't think. I know I didn't. So maybe try some of their podcasts and such, see if anything resonates.

 

[KennyA]

I used to travel a lot for similar reasons and I'm glad I retired before the t2 diagnosis. These days I don't bother telling anyone what I don't eat, simply because the staff do not understand, and I no longer hope that they will. 98% of the world is fixed on the "carbs good, fat bad" message so trying to explain normally meets total incomprehension. One of my best examples is going to do a talk on low-carb, which involved a dinner, and trying to get a low carb plate lined up with what the kitchen's idea of "healthy" was, which was fixed on low fat...bit of a nightmare. In the end I wound up with bland boiled chicken and vegetables...with a sweet lemon sauce, which fortunately came separately.

So these days I have a steak, or similar "like a normal person" and ask if I can swap the fries for a green salad, no dressing. It's just one thing less to get anxious, or in my case, angry, about.

Best of luck. Keep going.