I am sorry for your current situation. My Mother, who is now much older than you, had a similar history and symptom set. She was very overweight, but always appeared to have great energy, didn’t seem to need much sleep (and always claimed to sleep well, even though she had bad sleep apnea), always ‘felt’ warm, hated the taste of salt and didn’t crave sugary things much at all. In fact, she would often complain about how sugary and salty people made their foods. Fast-forward to last year, and she was suffering big time from many hypometabolic problems, including diagnosed MS, arthritis, glaucoma, eczema, chronic fatigue, and some other things. Clinically, she had normal thyroid levels except very high reverse T3. She tried dieting several times in the past, and her weight really got out of hand within a year or two after her first Jenny Craig attempt during college, and then continued to accelerate after each child.
The good news in my Mom’s case is that she has seen many good (though incomplete) improvements the past 6 months or so since we started having her eat to appetite of whatever she craved (including a lot of chocolate chocolate chip ice cream!): even her aversion to sugar and salt is almost gone now! It has been interesting. We’ve take on the world view that she has essentially been an anorexic for 40 years, but with a BMI of 40 (at 5’2″), and that eating MAY be the answer to many of her problems. Only time will tell, but the slow progress so far has been nice (smoother skin, outer eyebrows which had been gone since her mid 20s are coming back, better sleep, better mood, blood pressure down from about 160/90 to 140/70, teeth and gums never looked so good; but digestion still sucks, worse than ever edema in feet, still tired often…) I hope you (I hope we all!) are able to avoid some of these long-term complications of poor health.
I am not you, but please consider some pointers I thought of just while reading your post
I think your symptoms sound like the combination of low thyroid with Sky High Stress Hormones. Your consumption of 1300-1800 Cals per day is simply not enough. The fact that you were arriving there by eating to appetite implies that your body MADE it enough by jacking up compensation hormones (‘stress’ hormones). I think you are right to look into ‘refeeding’. I am not sure that 6000 Cals is the magic number, but I think, as per Anorexia recovery guidelines, likely 3000-4000 is probably appropriate for you, considering age, weight, and history. You may want to read through YourEatopia.com for some similar reasoning. As ErinElizabeth says, you may be best off NOT counting per se, but just diligently eating large’ish meals throughout the day (I’d say at least 3 ‘square’ meals, and snacking if you ever get hungry) and letting your body and appetite re-equilibriate slowly. Calorically-dense foods that require less digestive powers such as sugar (fruit, honey, cane sugar, maple syrup, rice syrup) may help you more easily eat higher amounts without the bloat and ‘fullness’ that starch, protein, and/or fat gives. I think all classes of nutrients (starch, protein, fat, sugar) have their importance, but ADDING a couple handfuls of raisins or spoonfuls of honey at the end of your meal or as between-meal snacks may help. Drinking juice and milk is great if it agrees with you. Keep it up! You may also consider digestive enzymes, apple cider vinegar capsules, and/or betaine hcl capsules. Some notice benefit, some don’t. But it’s something to consider while your digestion gets back into gear.
I also have so-called ‘Gilbert’s syndrome’ and I found my bilirubin would hover about 1.0-1.5mg/dL when I was young and healthier, but rose to about 2.0-2.5 when I finally got sick from metabolic issues later. Metabolic health (read: ‘hormones’) regulate the conjugating enzymes to some extent, so you may find your high biirubin comes down with increase thyroid/metabolic health. But something not often talked about is that this partially inhibited ‘glucuronidation’ of things (including bilirubin, but also estrogen and cortisol and other hormones, molds, some pharmaceuticals, etc.) means slower detox of these things in general. Glucuronidation is a major detox pathway for many foreign and endogenous substances. It is one of a few so-called ‘phase 2 detox pathways’
What this means is that someone with Gilbert’s syndrome is more likely to accumulate certain toxins and metabolic disruptors throughout heir lives, and they MAY be at risk more than the average person for having higher body and blood levels of these things. Thus, more than most you may consider the possibility that plastics, molds, synthetic junk will effect you. Allopathy hasn’t even asked the question: “what does this mean practically for someone with Gilbert’s?” But please keep this in mind going forward. Providing your liver with enough energy (glycogen from carbs; short chain fats from vinegar and coconut oil and fibers; enough protein including some glycine from supps or gelatin/collagen; and ideally overall lowish toxin load) should give your liver the best shot in handling this obstacle.
I wish the answers were all simple. But I’m pleased that you are on here searching. Whatever happens, please keep us all updated on your progress and findings. I think the more anecdotes out there, the more potential there is for people with seemingly unique situations to find some help.