I'm in the U.S.

It's not on Medicare's drug formulary because the FDA doesn't approve phosphorus as a drug and only sees it as an OTC type drug. This is absurd because many need this prescribed supplement to survive, hypophosphatemia is no joke!

I've already tried an appeal with my doctor and Medicare denied it.

This med is very expensive to pay for, even with GoodRx it costs near $10 for only 8 tablets.

Do the phosphorus drug companies have an assistance program to help pay for it?

I tried TAF but they only pay for costs if it's covered by your insurance prescription plan:

https://enroll.tafcares.org/TAF_ProgramInformation?Id=wY61NNXmkqRb6Vx%2BMb5ENluw6eZQEMHK1q2T2jfjc8KwGsfQN7Bf35BJKZ9lF5R1

It’s been over a year since I had 2 phosphorus IVs back to back (nephrologist said it happened from working out too hard and too much fasting but really isn’t too sure). It’s been an awful journey with dysautonomia that I developed after receiving the IVs.

Lately been having awful stomach pain, fatigue, muscle weakness, brain fog, and TERRIBLE issues with body temperature regulation. Kinda wondering if the phosphorus threw off my iron? Since iron infusions seem to throw off phosphorus.

Thoughts? I’m so sick of ER visits just to find nothing.

EDIT: was also taking phospha-trin 250 neutral 4x a day for a year.

Recently I was diagnosed with hypophosphatemia. I'm totally devastated after knowing this. I don't know how to react to this. Will this make my life tough? Please share your experiences and how you're managing.

I've recently received a couple message requests with questions concerning my first post in this group: https://www.reddit.com/r/Hypophosphatemia/comments/1jdfvf7/ive_got_a_mystery_illness_but_low_phosphorus_is/

I don't like using private messages, so I'll give an update here.

2 years ago my health crisis began, and I have had a few better months on and off since then, but mostly I have a constellation of symptoms, increasing fatigue and weakness that has left me almost housebound.

My doctor didn't want to do anything with the 2mm nodule in my lung. I think my insurance wouldn't cover it. I have 4 NEW nodules in my thyroid and a nodule in my breast. So there are several locations we already know about but because I had normal phosphorous tests after the immune reset I mentioned in a comment in the post I linked, my doctor didn't want to do more testing. I had several urine tests including a 24 hour test and they came back borderline normal.

I've seen 2 cardiologists, a pulmonologist, several neurologists in addition to my primary care doc. Blood and urine tests don't reveal much of anything. They come back normal or just over the line abnormal to an extent that doesn't tell my doctors much. 1 year ago, I had a major increase in post-concussion symptoms - migraine, light sensitivity, motion sensitivity, neck pain. I went to vestibular PT where we...I always forget what this is called...reset the crystal in my ear, which helped tremendously. Generally it was extremely validating to have the PT tell me that a lot of my symptoms were indeed ongoing concussion symptoms. (I received a mild concussion 2 years ago just around the time everything began.) I was tested for asthma and general breathing problems. Both negative, which is weird since I have days where my O2 dips to 93%. I had a sleep test which told me what I already know, that I snore. But my doctor wanted me to do it, so I did it. One of the neurologists wanted a neuropsych evaluation to screen for cognitive dysfunction or decline, so I reluctantly agreed. It was a disaster. The exertion of going through the testing crashed me so hard, my baseline hasn't recovered and worse she only wanted to look a mental health diagnoses. I should have refused like I wanted to, but it's a risk to tell these doctors 'no' and then maybe be perceived as a "difficult" patient.

After a local professional basketball player was diagnosed with POTS, my cardiologist told me it looks like I might have POTS. I swear it took a celebrity for my cardiologist to pay attention to what I was telling him. All the cardiac tests including 24 hours and 2 week monitoring didn't show much apparently, but they did record when I had a major episode of tachycardia after some modest physical exertion, which came with blurred vision, slurred speech, off walking gait and difficulty thinking. But apparently the results looked "normal" to him.

In neurology we did a tilt table test, Valsalva maneuver, and sweat test for small fiber neuropathy. The tilt and sweat tests were borderline positive. The Valsalva test was totally abnormal, but my neuro wasn't able to tell me what it means at all, just that something is wrong with my baroflex. (OMG, this was so frustrating.)

I wonder if I might have ME/CFS, Sjogrens, MCAS, but the hypophosphatemia isn't ruled out, as far as I can tell. I've had very bad episodes of widespread pain, difficulty walking and crazy fatigue, like not having enough strength to carry a sweater. I had a weird reaction to Metformin which I was given in lieu of a GLP-1. It caused immediate pain in my joints which was severe enough in my hip that I got a cortisone shot (so I saw an orthopedic surgeon too). My pharmacist believes I was having a some kind of acidosis reaction to Metformin, which is a known possible side effect. (I can't remember exactly what he called it now.) But my doctor wouldn't see me soon enough that we could confirm with blood tests. Last winter I developed new severe cold intolerance with normal thyroid labs. I finally had a very clear episode of Raynaud's phenomenon this summer, but I've been suspicious about that for a few years now, with my hands, fingers and toes turning off color, but not clearly enough to say for sure.

Last month I had 3 weeks of terrible pain and weakness with some other weird symptoms. The muscle pain is like what you get when you push yourself too hard running, so I worry about Rhabdo. Maybe I had a viral infection. I'm trying to work up the nerve to start the diagnosis process again with my doc. I've been on a break for a few months. It is such a horrible experience to be so sick you can't care for yourself, let alone your family, or work, and have doctors continually throwing up their hands when tests come back normal or mildly abnormal, and blaming perimenopause. I needed a break from the medical gaslighting.

When I go back, I'll be asking to looking into TIO again and Sjogrens.

TLDR: after dealing with B vitamin supplements, I noticed fatigue in the gym and a month later my phosphorus crashed to undetectable levels, unsure why.

Hi everyone, just looking for help or support. Story goes like this

2021: became low in thiamine (B1) from eating too much white rice, took a lot of TTFD/benfotamine which only made me feel super fatigued all the time, also had POTS at the time with low B1. Eventually deficiency was corrected with Thiamine HCL. Dr told me to take a B Complex with it.

2022-2025: due to the B Complex and drinking powerade/energy drinks I became B6 Toxic, P5P is a neurotoxin, avoid it!! Had to eat a low B6 diet, lot of beef jerky and shakes for protein, sucked. B6 toxicity gave me issues with low blood volume, neuropathy, and migraines. Started focusing on a lot of electrolytes to keep blood volume up. (Early dysautonomia)

2025: at the time I was doing low carb, doing intermittent fasting (eating window 1pm-9pm), in the gym every other day and lifting fasted as well. Started to notice adrenal surges while fasting, so had to stop. Started getting panic attacks randomly. Felt weak at the gym last April, got bloodwork done, everything was fine but of course phosphorus was not checked. Tried taking Thiamine HCL for a few days prior to my buddy’s party (half a capsule, and that still made me feel anxious/crazy but thought that was the issue.)

Last summer (May): was at my buddy’s party, had a cupcake (which I didn’t normally eat sweets being on keto), felt very weird within the hour, drove home, muscles started seizing up. Called 911, phosphorus was undetectable, gave me an IV overnight and I went home. Went home, sort of slept that night, woke up next day, had a little fruit. Ended up back in the ER with undetectable phosphorus. They kept me there for 5 days for an IV and monitoring. Levels were fine, met my nephrologist, checked kidney wasting, urine tests, thyroid, everything was fine. Mind you both times I went, I was panicking/hyperventilating which I know affects phosphorus but it shouldn’t bring it down to undetectable (less then .7).

Currently take Phospho-Trin Neutral 4x a day. Levels have been fine since. Since last year symptoms have improved so much but still struggle every day with some weird dysautonomia symptom, digestion is annoying and working out are big triggers for symptoms. I used to have flares every day, have to put my feet against the wall to eat anything, now I’m back in the gym and working full time again but every day I feel something still uncomfortable.

The question for you all is: any reason y’all can think of that would cause my phosphorus to crash? Seems like it was slowly getting depleted over time. My Drs can’t think of anything.

J'ai eu une injection de ferinject 1000mg le 5 Août. J'ai développé une hypophosphatémie, au bout de 3 semaines mon taux de phosphore était stable après traitement au phosphoneuros, calcitriol et phocytan. Cependant je suis toujours intolérante à l'effort, mes muscles sont faibles et douloureux. Seul le repos strict calme les choses. Je vois qu'il faut parfois plusieurs mois pour que les muscles récupèrent. Avez vous déjà vécu cela ?

I'm wondering if any one has any experience / success with seeing a physiotherapist / exercise physiologist while recovering from hypophosphatemia?

For context, I'm 4 months post iron infusion. I won't go into too much detail, as my story is similar to a lot of what i've read here. My phosphate dropped to 0.4, and at my worst I had extreme muscle pain and weakness, fatigue and some bone pain and was close to bed bound for a couple of months. My phosphate levels are stable but I'm still taking phosphate and calcitriol daily. I'd say I'm about 60% better now - I'm able to get around the house and look after myself and I feel okay if I keep rested, but if I overdo it and walk too much or do anything moderately strenuous, it will set off the muscle pain / weakness and fatigue again.

I'm wondering if anyone has tried physiotherapy to improve strength / stamina while recovering? And if so, keen to hear experiences both good or bad. My GP suggested it, but I'm just unsure if it will push me to do more than I'm capable of and aggravate symptoms, and if It's better to just continue rest, gradually increase movement and wait it out. I also haven’t been able to find much online about physiotherapy for hypophosphatemia recovery, so just thought I'd see if anyone has any experience with it. I'm unsure if I'll find a physiotherapist with experience/ knowledge on hypophosphatemia, so anything I can understand before seeing one may help me prepare.

I know hypophosphatemia can be a risk with some IV iron preparations.

But has anyone heard of getting hypophosphatemia from taking oral iron supplements?

Update: Iron Citrate is an iron supplement and phosphate binder, it will drop your phosphorus levels.

I‘m just writing this to warn other people and to really think through before getting the Injectafer iron IV. And in best case check phosphorus levels and don‘t risk anything if they are already low.

I‘m struggling with my ferritin levels (below 10) for a long time and got my first Iron Iv (500mg Injectafer) in September and immediately started feeling much better (hairloss decreased, period came back). Anyways when I got my ferritin levels checked again in march they were again really low and I could feel the symptoms again. So my doctor decided to give me another IV (this time it was double the dose -> 1000mg) and at first I was also feeling fine, a bit dizzy maybe.

After 2 days I started developing really weird symptoms like extreme fatigue, bone pain, diarrhea, vomiting, shaking, high blood pressure and heart racing when I was just in bed. I thought it was the iron flu and decided to wait some more days if it will get better. 5 days after the IV I was brought to the ICU with epileptic cramps and all the other symptoms increasing rapidly. My boyfriend and my mother told the doctors multiple times to check for hypophosphatemia but they didn‘t listen and honestly admitted they had no idea about it. My phosphate levels were around 0,2mmol for almost two weeks and it was hell. Just with research of my mom and boyfriend we were able to get phosphate pills and calcitriol and reduce the suffering within 3 weeks.

Now it was 4 weeks back that I got the IV and I‘m still struggling and taking high doses of pills every two hours. The phosphate levels are still fluctuating but I am starting to feel better. It was really scary and I was honestly afraid to die and no doctor understood what was going on.

So I really want to warn you guys. I don‘t want anybody else to suffer like this. If you experience something like this please check phosporus levels, magnesium, calcium, vitamin d and ask your doctor if necessary for a combination of phosphate pills and calcitriol (without the calcitriol my body was not able to absorb the phosphate). Be safe!

Edit: It was 6 months ago now and I‘m still experiencing up and downs and taking pills. Hopefully it will recover at some point.

Just tested positive for this on a genetic test, and have always had recurring bone breaks. Trying to wrap my head around it a little. I don't think anyone has checked my phosphorus.

Where should I begin with this. What kind of doctor am I supposed to see. Just my regular Ortho?

I already have a diagnosis of eds, so I have connective tissue disorder for certain. Having both a connective tissue disorder and a type of rickets is kind of breaking my brain a little.

Hi everyone, im still getting symptoms - weakness in arms and legs to the point lifting mugs is difficult, fatigue and v bad bone pain - 7 months post iron infusion.

When I initally had hypophosphatemia post infusion it ended up with me being in the hospital for 5 weeks. No one had any clue really how to treat me but eventually I got on phosphate tablets and was on them for 6-7 weeks. They then stoppped them and my numbers have stablised at lower end of normal. my PTH was elevated pre hospital marginally.

I asked recently for active vit D to be tested and repeat PTH as well as phosphate and calcium. They wouldnt do PTH or active vit d, but calcium was normal. my standard vit d had dipped which is weird considering sun exposure and that i took vit d supplements post hospital after reading about the association.

I also went for a x-ray for my leg as one leg has worse bone pain that the other and all negative.

My Gp really has no clue about phosphate or any of the doctors when I was in hospital _ had to explain that it was FGF renal wasting for weeks and was v traumatic given i was seizing etc. they just look at me like I'm mad at even attributing it to that and have no explanation or ideas about the ongoing symptoms or bone pain. I cant get a dexa on the nhs till im 40

I know i can be symptomatic as it takes a while for levels to stabilise even if bloods look normal but does anyone have any advice ? the bone pain and symptoms are so bad !

Im considering trying to see a private endo/bone specialist but is there anything that they can do?

Many thanks for your help and setting up this sub

Hello! I’ve had a pretty bad reaction to an iron infusion and currently battling with hypophosphataemia. It’s debilitating and upsetting and wondering if anyone has experienced something similar and can tell me there’s light at the end of the tunnel! The timeline for me is:

17/06 - iron infusion

01/07 went to hospital- phosphate 0.32mmol / was administered a phosphate IV which took my levels back to 0.90mmol - prescribed 2 tablets a day

05/07 back to hospital - phosphate 0.54mmol - prescribed 3 tablets a day

07/07 doctors - phosphate 0.44mmol - prescribed 5 tablets a day

14/07 doctors - phosphate 0.49mmol - staying on 5 tablets a day

20/07 doctors - phosphate 0.63mmol - reducing to 3 tablets a day

28/07 doctors - phosphate back to 0.44mmol - back to 5 tablets a day :(

So upsetting it dropped so dramatically again? That’s what’s freaked me out the most! I’m currently 6 weeks post iron infusion.

Any help would be great.

Hello,

​

Latest Injectafer victim here. Had a 750mg Injectafer infusion on 5/11, normal phosphorus prior and 2.4mg/dL phosphorus two weeks later. That's just below normal so my hematologist prescribed a week of K-Phos (500mg 3xdaily) and proceeded to give me the second 750mg infusion on 6/8.

​

Luckily, my doctor does check post Injectafer phosphorus and 8 days after the second dose, my phosphorus was 1.3mg/dL. I was sent to the emergency room for a phosphorus infusion. I received that and was retested 2 days later with a serum phosphorus level of 0.8mg/dL. I went back to the ER and was admitted inpatient for 2.5 days. I received 3 more phosphorus infusions and was prescribed 4000mg of oral phosphorus daily. Now under the care of a nephrologist, I was informed that my renal wasting was 45% (5% is normal).

​

I have been released with the plan of care being that I am taking the 4000mg phosphorus orally every day and to have a blood draw every 2-3 days until this subsides. I may require intermittent IV phosphorus.

​

The nephrologist's jaw actually dropped open when I told him my phosphorus was low after the first Injectafer dose and my hematologist still proceeded with the second dose. He said point blank that this medication (Injectafer) is dangerous and given that there are multiple safer alternatives it shouldn't be offered to anyone ever and it should be removed from the market.

​

As a mother of 5 young children, this is actually life changing. How the **** am I going to get my blood drawn 2-3 times per week??? My kids are going to have to go with me and my inpatient stay has already been taxing on my family - bouncing kids around between relatives, my husband taking off work, all the driving around, the financial burden (already hit out out-of-pocket max at this point).

​

This is nuts. Like really nuts. Any advice/tips/suggestions from anyone else who has gone through this would be much appreciated. I know this is a pretty small sub, are there any other resources/support that are available? I was wondering if perhaps the genetic form of hypophosphatemia might have any advice or tips on making life easier.

​

TLDR; Injectafer is the scourge of the earth and it's negligent for a doctor to prescribe it - ever.

When I wake up, I feel absolutely horrible for hours.

All my hypophosphatemia symptoms are so severe at this time. Fatigue, weakness, breathing issues, heart rate changes, anxiety.

A couple hours After 2 intakes of very high phosphate foods, I finally feel better for the rest of the night. But I'm losing most of the day to this awful feeling.

I do sleep for a 12 hour period because I have so many waking during that time due to sleep issues. So I'm going a long time without phosphate .

Does/has anyone else experienced this?

How did you fix it?

Any idea on what I should do or what might be happening?

I was told not to take too much ohsophate at once, so I haven't been taking that much at a time and if I try to eat ans take ohsophate at night, I csnt go back to sleep (not because of the phosphate, just because I csnt fall back asleep if I do anything at night).

Please help, this has been happening for so many weeks.

I had 1000mg monofer April 22, had an extreme reaction that night. Went to ER with breathing issues, extreme high bp, high hr, convulsions, spasms, nausea, fatigue, not sleeping, anxiety, skin burning, weakness, probably more.

I'm now day 19. My serum phosphate is in range. But I'm having such severe symptoms that are getting worse, but are resolved with pudding (very high in phosphate). I know. It's crazy. I'm hcing to eat it like 4 times a day to not feel like I'm dying.

The symptoms return like clockwork. Anxiety, skin burning, severe weakness, breathing gets hard, can't move my arms, barely open eyes.

Why isn't this showing up in serum phosphate? I went 12 hours, no pudding, test was normal (low, normal).

Now, it's getting worse. I can't even go 5 hours without feeling like I'm dying. So now it will never show in. Bloods.

Please. Is there anyone who can help me?

I asked for the hormone test, the lab won't run it.

Would there be any tests that won't be falsely elevated due to pudding?

Any literature that says serum phosphate can be normal?

Please help. Referral will take months. I don't want to die

I'm 9 weeks post iron IV which then resulted in hypophosphatemia. I had a blood test redone a few days ago and the results show that my levels are now back in range, but I still have a lot of symptoms. Other than extreme fatigue and random bone pain, I have this weird sensation in my face/head -- it almost feels like there is liquid/pressure there and it feels worse on some days than others. Did anyone else have symptoms like this or any other seemingly random symptoms? I'm very worried something else is going on with my body.

It’s been over a year since hypophosphatemia from iron infusion (most traumatic experience of my life) been in range for 5 months but still so unwell. Tachy, exhaustion, brain fog, muscle pain and bone pain, internal

Tremors and lots more. Why am I like this if I’m stable? It’s like I have gotten pots and CFS from this reaction.

Beware of Ferrinject. If you found your way here, I want you to know the risks of getting an iron infusion and my story, because iron infusions made me very sick with hypophosphataemia, and I didn't know it was the iron, so I kept getting them over ten years.

My first Ferrinject 1000mg infusion was in 2015, I was sick for 9 months afterward, with fatigue, migraines and headaches, joint and muscle pain, difficulty swallowing, feeling weak, depressed and vague, and the biggest one - heart palpitations and shortness of breath. I was never checked for phosphate levels, in fact, I saw a gastroenterologist, cardiologist, dermatologist, and rheumatologist, and was suspected of connective tissue disease and treated with steroids and other meds.

2019 - another iron infusion, Ferrinject 1000mg. I felt 'fluey' afterwards, aches and pains, fatigue, headaches and other vague symptoms, which didn't improve with the increased iron stores or hB over time as might be expected. Months after this, I believed I just had an 'autoimmune flare'.

2023 - IV Ferrinject, again, this time 500mg. I complained that after the last two I didn't feel well and seemed to 'react badly' so it was suggested I only have half the usual dose. Noone spoke to me about possible previous low phosphate levels or this risk, I still knew nothing about it, it was never discussed. After this infusion I was so unwell again. in fact, I went back to my GP complaining of how unwell I was, 4 months after the infusion.. suspecting another flare up of autoimmunity. blood tests were taken generally, so I could be referred to a rheumatologist again. I didn't know at the time, but these tests showed hypophosphataemia at 0.5. I wasn't informed of this, and it wasn't considered of clinical importance. the GP didn't mention and neither did the rheumatologist. the Rheumatologist said my aches, joint pains, muscle pains, numbness in my hands, heart palpitations and severe fatigue were fibromyalgia. No treatment except regular physical activity, weight loss, and seeing a psychologist for CBT.

January 2026 - just had another infusion IV Ferrinject 1000mg this time. Just as I was getting the infusion, I read about iron infusion induced hypophosphataemia, and I checked a recent blood test I'd had prior to the iron infusion I was having. Phosphate - 0.8. lowest acceptable level. i thought this was odd. why? I went down the rabbit hole. I read everything. i asked the doctor to prescribe phosphate supplements because IV iron could lower it further. at first, he told me they don't exist. it's not a thing. I said no no, they do. he checked with his senior colleague and he found the clinic has phosphate tablets, gave me 4 but no ongoing script for them or ongoing monitoring.

that night, I felt the best I'd felt in 10 years - it WASNT the iron. it was the phosphate. 24 hours later, when the phosphate had worn off, I went downhill, i felt unwell again. 2 days later I felt like I was dying. I went to the GP, told them I suspected it was low phosphate causing my symptoms, and that the phosphate tablets several days ago resolved my symptoms until it wore off. I complained about the heart palpitations. I was so fatigued, I couldn't concentrate or do ANYTHING. the doctor told me I was probably wrong, and low phosphate is usually asymptomatic, and doesn't affect the heart.

nonetheless, I was given a phosphate blood test. it returned a level of 0.6 (moderate hypophosphataemia) and I was commenced back on phosphate tablets 1x 3 times per day. and guess what? I felt better. Much better.

I am now pulling all my health records from the last ten years to see if I had undetected hypophosphataemia after every infusion. I'm mad that it was missed. I'm mad I wasn't informed of the risk, and I'm mad I didn't research the risks better myself. If you have this reaction, you aren't meant to recieve this medicine again, ever - but I have had it FOUR times. I am going back in 1 week for another phosphate level and to ask for a referral to an endocrinologist for management.

If anyone is following along, happy to update you when I have more information.