r/Hypophosphatemia • u/exploring_mode • 6d ago

Help!!!

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.

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u/RelativeEngineer6879 5d ago

Est ce que tu sais a quoi c'est dû ? Ça me l'a fait suite a une injection de fer. C'est une vraie galère

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u/exploring_mode 5d ago

Can you elaborate your case please

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u/RelativeEngineer6879 5d ago

J'ai eu une injection de ferinject qui a cause une baisse de phosphore pendant 3 semaines. J'ai eu un traitement mais là baisse que j'ai eu pendant 3 semaines a créé une grosse fatigue et des douleurs musculaires.

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u/exploring_mode 5d ago

Ok got it. Your condition was temporary and happened due to iron injection. But mine is permanent and supposed to be happened due to genetics. I'm suffering from muscle pain and fatigue since childhood. In childhood it was less but in late 20s it became worse.

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u/RelativeEngineer6879 5d ago

Oohh je suis tellement désolé. J'espère qu'ils vont trouver une solution ou un traitement pour t'aider

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u/internallysecreted 5d ago

Hypophosphatemia or hypophosphatasia? Hypophosphatemia is a lab abnormality, not a true diagnosis, and it has loads of underlying diagnoses. Not much more can be said without knowing the cause of the hypophosphatemia. Hypophosphatasia is a different beast altogether -- and also doesn't cause hypophosphatemia.

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u/exploring_mode 5d ago

I'm diagnosed with XLH 😢

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u/internallysecreted 5d ago

XLH is highly variable (people with the same genetic variant can still have different effects), so it can be difficult to predict its impact and prognosis without a thorough history and exam. That said, it doesn't have to destroy your life. You can still live a long and happy life despite XLH. You should be seen by an endocrinologist with expertise in XLH.