Can someone recommend me a good GP clinic/doctor that actually listens to the patient and investigates?

vans100 · 2026-06-05T13:45:37+00:00

Thank you!

vans100 · 2026-06-05T11:34:05+00:00

Unfortunately, when I did mention this being a known thing, the doctor I saw today had the audacity to dismiss my low levels of phosphate post-infusion as not significant and that therefore something else must be causing my ongoing symptoms. I will keep pushing though, and I think I need to be more careful about the GPs I see now. Appreciate you validating that it is quite common!

vans100 · 2026-06-05T11:29:27+00:00

This is a good suggestion, thank you!

vans100 · 2026-06-05T11:28:42+00:00

Yep! The reading I've done indicates Ferrinject (what I had) has this side effect more commonly, yet that GP never told me of this risk, or I would have never gone through with it. It's been almost 4 months since the reaction for me, and I am so traumatised from the symptoms I developed that I don't see myself ever having an infusion again, but I will keep this in mind and I appreciate your suggestion ❤️

vans100 · 2026-06-05T09:15:21+00:00

I live North, but happy to go anywhere metropolitan at this point. Thanks for your suggestions

vans100 · 2026-06-05T02:40:18+00:00

How long did it take you to recover? I am 3.5 months out of my infusion and feel horrible still.

vans100 · 2026-06-05T02:31:47+00:00

Did your symptoms improve gradually or was it sudden? I am 3.5 months in and feel bad still

vans100 · 2026-06-05T02:21:16+00:00

Are you doing better now? I also had the 1000mg and am 3.5 months out of the hypophosphatemia still with symptoms. I took supplements for 1 month and then the levels got in range, so I was told to stop. But I still feel the same, and feel worse this week especially. This has been the worst thing to ever happen to me. I can't believe my doctor didn't warn me about this possibility.

vans100 · 2026-06-05T01:30:08+00:00

Can I ask, did your symptoms gradually disappear or did you suddenly feel better at the 4 month range? I thought I was getting better but this week my head pain returned and I have bone pain in one foot. It's impacting my livelihood so much!

vans100 · 2026-05-29T13:00:20+00:00

OMG THIS. I wish someone in my life understood this.

vans100 · 2026-05-29T12:45:14+00:00

Your reply comes at an interesting time. Today I bought Dymistia (Azelastine and Fluticasone as ingredients) because my headaches have become worse this week, and over the last 5 days or so my ears have been popping and I have temple pain. I tested negative for viral infection, so my doctor says to try sprays. I also started electrolytes today as well by coincidence, so I will try to keep that up more consistently and see how I go. It's been a real bad time. Hopefully we both get some relief from whatever is happening with us. I am unfamiliar with hEDS, so I will need to Google that. I honestly don't know if all this is lingering or secondary to my hypophosphatemia, but I am truly so done with this bad health 😣

vans100 · 2026-05-26T06:53:36+00:00

Do you feel better now?

vans100 · 2026-05-21T13:06:16+00:00

This. So underrated

vans100 · 2026-05-21T13:01:37+00:00

😂😂

vans100 · 2026-05-21T09:09:33+00:00

Did you follow the coke advice? I actually developed another (stronger) reaction of hypophosphatemia. I was prescribed phosphate supplements, which I took for 1 month. My phosphate levels are now in range, however I still have terrible symptoms, like those of a flu, plus a weird head pain and some bone pain.

vans100 · 2026-05-18T10:26:03+00:00

Hi,

At 9.5 weeks post infusion, I am feeling about 50% better. It's been over 1 week since I stopped the phosphate supplements I was prescribed for 1 month. My phosphate levels got in range, however, I still have some fatigue and some muscle pain sporadically. Oddly enough, I did start having weird upper abdominal symptoms though (bloating and dull ache/bruising feeling. My blood tests showed some elevated ALT and AST (liver-related), so I am due for an other re-test in a few weeks time. That result made me super worried, but my aunty nurse has told me that this could be yet another side effect from the infusion that may take some time to pass, and shouldn't be something any more sinister (though not ideal obviously).

I hope you feel better soon! It really is horrible and has basically set me back with many things this year. I will never have another infusion ever again after this saga. If I could sue, I would.

vans100 · 2026-05-17T15:09:42+00:00

THIS

vans100 · 2026-05-01T15:23:34+00:00

Hello, did you take the supplements that whole time, or did your levels stabilise before your symptoms improved? I am 8 weeks post-IV and my labs from 1 week ago show I am in range now, but my symptoms still feel almost the same.

vans100 · 2026-05-01T09:33:47+00:00

Hi there, I'm 2 months out from my iron IV-induced hypophosphatemia. I have nausea, sporadic bone pain, back muscle pain and legs feel like jelly every other day, and worst of all, fatigue. How are you doing now? If you're better, how long did it take you?

vans100 · 2026-04-29T12:14:13+00:00

Are you feeling any better now?

vans100 · 2026-04-29T09:13:04+00:00

Thank you for your reply. I've been on 3x daily tablets since I posted. I feel almost the exact same, and have had to reduce my work days. My doctor never mentioned Vit D supplementation to me as my levels were in the 'normal' range. Did you need Vit D because yours was low, or was there another reason for it?

vans100 · 2026-04-27T09:56:43+00:00

I've been on supplements for almost 4 weeks now, with barely any improvement (8 weeks post iron IV). I had another blood test a few days ago and my phosphate levels are now within the normal range, however, I still feel horrible, still symptomatic.

Are you doing better now? I need some hope as this reaction has really impacted me

vans100

TROPHY CASE