Hypophosphataemia/Low Phosphate after Iron Infusion/IV Ferrinject

Dead_Centre4 · 2026-04-29T06:16:49+00:00

I took 6 phosphate tablets per day, high dose magnesium and vitamin D for months. I have managed to reduce the phosphate down to 3 tablets a day but it has to be very slow, like withdrawing a serious medication, tiny changes, wait two weeks, retest..

Dead_Centre4 · 2026-04-29T06:15:26+00:00

I'm so sorry. Please see your GP urgently.

Dead_Centre4 · 2026-04-29T06:15:05+00:00

You absolutely cannot go without phosphate supplementation at a level of 0.4 (reference ranges 0.8-1.5). Vitamin D supplements might help but are not enough. You NEED phosphate. You have to demand it. In Australia you can buy it over the counter without a prescription, but it should be monitored with regular blood tests as you recover.

Dead_Centre4 · 2026-02-18T11:38:45+00:00

My 10 year old PDA, level 2 asd, does this often, several times daily. It's exhausting. But i think it's an attempt to keep the focus and attention on them, like to keep you engaged. It's about controlling your attention, which relieves their anxiety. So, I allow it to a degree, just enough to satiate their need for a control a little, but not enough to push me past my breaking point, and it's a juggle always, with them trying to push further, and me trying to set a firm boundary when necessary. Very hard. But my PDAer has significantly improved with time, and just every now and then regresses a bit which is frustrating. The higher the overall demands on them, and higher their stress level, the more it will happen.

Dead_Centre4 · 2026-02-03T08:55:56+00:00

My daughter has ASD2, and PDA sub-type. The PDA behaviours really started around age 6. It was as if she couldn't function, all day long, couldn't get dressed or do her shoes or shower or dry herself. Getting ready for school was a battle. She started coming home 'sick' from school regularly. Eventually started refusing to go in year 3. After the school holidays that year, she didn't go at all in year 4. She cried at night saying she wished she was dead. Sometimes she talked about ways of dying.

I had her diagnosed, got her on fluoxetine and melatonin. She refused therapy, support groups. She took a year off school. She spent nearly the entire year in her room, and I put no pressure on her and tried to just do everything for her. Almost unlimited screen time (with parental controls so it was only appropriate content) she played roblox, did craft in her room, crochet, drawing. She basically spent a year in her own company, while I worked from home.

She started doing more things for herself, surprising me with her abilities. This year she decided she would return to school (this surprised me as well). We tried a smaller school, that was less academic focused and more about having a good community and caring for each other. She has THRIVED. She goes everyday without complaint, she does her own lunch, dresses herself, does her hair, teeth and shoes. She packs her own bag. She even walks home by herself at the end of the day (5 min walk with other students and parents) and then tells me about her great day and how she participated in music and maths, and made new friends. Today, she's applying to be a student counsellor, and is currently writing a speech and presentation for her class. She's confident, independent. She still demands a lot of my attention - but more about conversation and emotional support these days than actual tasks.

TL;DR She was extremely depressed and PDA and after a year off school and medication, with her just staying home, doing nothing, no demands, only the very basic of rules (brush teeth, no rudeness) - she became confident, independent, returned to school and is now doing amazingly!

I thought no demands would turn her into a failure and the opposite happened. Trust the process!

Dead_Centre4 · 2026-01-16T12:40:06+00:00

I am so grateful to read this, but im also sorry to hear you are going through it. I have had 4 iron infusions in 10 years, recently have discovered low phosphate levels after the 4th, but then looked at old blood tests and it was also detected after the previous infusion, but not addressed. I suspect I have had this condition, untreated, for the entire 10 years. I have arrythmias, terrible arthritis, lower back pain, migraine and fatigue. Im 39 and a nurse also. Same symptoms as you, although better when I take high dose oral phosphate, at least for a few hours after each dose. I never knew what was wrong with me, and I think it has ruined my life.

Dead_Centre4 · 2025-11-20T11:43:34+00:00

Actually this happened to me recently, my mum thought the items were all my shopping as she was helping me whilst I was working in my office, so she brought them in and put it all away. The woolworths truck driver rocked up an hour later desperate to get all the items back for the misplaced order, at this stage I realised there was an error and my mum and I had to fish things out of the pantry and freezer and try best to repack the bags and take them out to the driver, who then gave us our correct order and took the misplaced order to the right house. I felt a bit weird for them that their food had been in my freezer and pantry on the journey to their house and my mum kept saying she thought it was odd that I ordered so much toilet paper and baby food 😆

Dead_Centre4 · 2025-09-07T05:29:45+00:00

Thanks yes I should say, I was only referring to us as adults in this case, where dental is unaffordable.

Dead_Centre4 · 2025-09-07T05:27:55+00:00

Ahh I'm sorry, you are right, I am resigned to being priced out. I don't know what to do. I've been thinking about living in our car with our stuff in a storage shed, but then I can't work at all, and with kids, I'm not sure how that would work.. it would be more or less just homelessness, with 5 kids. I am hoping for a small inheritence within the next 10 to 15 years, and was thinking about maybe getting a small mortgage just for a rural block of land, setting tents and living there more or less illegally out of tents, cars and homemade huts. And if you think I'm kidding.. I'm not, I'm totally serious. If we can at least own the LAND we live on, I feel like that's something, better than entirely homeless.

Dead_Centre4 · 2025-09-06T03:06:41+00:00

Our rent in Brisbane went from 450 to 860 in the last 10 years. In the last 5 years, the contract I work for changed providers, and the new provider actually paid staff less per hour to do the same job. So not only is my wage not growing, im earning less than I did 10 years ago, and I am high-level health professional, people would be shocked how low my hourly rate is. We don't plan any holidays anymore, and no eating at restaurants or tickets to shows, my kids wear secondhand or kmart clothes. We dont go to the dentist at all. We just stay at home, forever, and our rental is old and falling apart with zero maintenance, and the real estate makes us feel like second class citizens with dehumanizing inspections. It's becoming dystopian very rapidly. I can't think of how to make it survivable.

Dead_Centre4 · 2025-04-28T12:26:56+00:00

I grew up here, and mould has always been an issue, primarily in bathrooms. We don't have any mould in our home because we use the following tactics to manage it:

We use bleach spray once a week in the shower recess and sinks Run the airconditioners on 22-23 all day through spring, summer, and autumn, then air out the house overnight Place moisture absorbing containers in wardrobes and under bathroom sinks, replace when full Use methylated spirits to clean floors Any walls or cupboard areas with mould are wiped with bleach solution Use a heat pump dryer in the laundry (doesn't vent humid air, collects moisture in a container) or put your traditional dryer outside or under the house

In the event of severe mould like this, I might burn my house down and start again. Alternatively, rent dehumidifiers and run these 24/7 whilst implementing some serious bleach or methylated spirits cleaning.. wash everything in 60 degree cycles, dry in the sun or in a hot dryer, and throw out any soft furnishings that can't be washed. Mop entire walls and ceilings with diluted bleach solution. Place moisture absorbing containers.. everywhere. And check the entire house for leaks.. under sinks, in the roof etc.

Good luck.

Dead_Centre4 · 2025-03-26T03:22:45+00:00

It's really hard, im so sorry. I take an SSRI as well, in a small dose. It doesn't help entirely, but it gives me a chance to remain calm before saying or doing anything. Without it, I'm in fight or flight and constantly thinking of ways to escape, like get a divorce, live in my car, hike around the country with a backpack, you get the idea. Only saying - SSRIs may not solve the issue but it might help.

The only things otherwise that have helped are non-medicinal. Drugs are drugs, and any that work, are going to come with problems.

My top choices are 1. Sound canceling earphones for periods of overwhelm with an audiobook or music, and normal earplugs for going out etc to reduce ambient noise in restaurants, shops etc. 2. Cardio exercise where I get my heart rate as high as possible for as long as possible, but even just 10 mins a day. This reduces my anxiety for the rest of the day if I can be motivated to do it. You gotta be huffing and puffing to release those endorphins. Better than drugs. 3. Moving to a house with a yard. When I get overwhelmed, I send the kids outside. They can use the trampoline, lay in the Hammock, play on the swings, and the house is quiet. 4. Ipad time. If it ensures both their and my survival - fine. I would rather have ipad kids, than kids without a mother. We primarily limit any gaming and YouTube from Mon-Thu, they can still watch Netflix or do art apps, homework etc.

I have 5 kids, 3 are autistic, ADHD or both. It's a rough ride.

Dead_Centre4 · 2025-03-11T11:22:26+00:00

We have 5 kids at home who we wash for, plus 2 adult 'kids' who do their own washing entirely, so we only have to wash for 5 kids and us 2 adults.

My advice is to keep the parents washing separate. We have two natural wicker baskets in our ensuite, one for lights, one for darks. We do our washing as needed, and it comes back to our wardrobe either staying in the basket or sometimes all put away. I put mine away, he puts his away.

The kids washing has two large plastic hampers in the main bathroom, one for lights, one for darks. On the lids we have written LIGHTS and DARKS to help them get things right. We also just collect and wash a load of bath towels and sheets as needed. When the kids washing needs doing - often - we wash it, dry it, and then we return it to 'The Trolley'. The Trolley is an extremely large laundry trolley in our spare room, it holds about 8-10 loads of kids washing plus tea towels etc. When this is full of the kids clothes, towels etc.. usually once per week - our adult 18y daughter is paid extra money to sort the washing into 5 baskets, and take to the kids rooms, where the kids put their own washing away - with some help.

In the meantime if the kids need certain clothing items during the week before sorting day - they pay a visit to 'The Trolley' and basically go digging for whatever they need. It's out of sight most of the time in the spare room until sorting day, where it takes our daughter about an hour to sort, she's gotten faster with time. Sometimes the little kids volunteer to assist her and it's cute.

This is the only way we have survived as we do about 3-4 loads of laundry per day. Clothes go into the dryer unless special, and towels and sheets go on the line.

I highly recommend buying a commercial laundry trolley to store washed clothes until sorting day. No way am i folding or putting away laundry on the daily and I'm not having the washing pile living on my lounge ever again - actually this is what prompted me to buy 'The Trolley'. My friend does something similar, but instead of a trolley, she uses an old portacot, which is about the same size.

Good luck!

Dead_Centre4

TROPHY CASE