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Doctor insights on: Which Doctor Specializes In Porphyria

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What is “latent” porphyria?  if my doctor told me that I have “latent” porphyria, does this mean that I will never have any symptoms?

What is “latent” porphyria?  if my doctor told me that I have “latent” porphyria, does this mean that I will never have any symptoms?

Porphyria: It depends on what type of porphyria we're talking about. Some porphyrias can be dangerous, and some can be hereditary so you need to be more specific about what type you're worried about so that you can get appropriate advice from your physician. Lots of information can be found on the website for the american porphyria foundation at www.Porphyriafoundation.Com. ...Read more

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Dr. Aletha Tippett
89 doctors shared insights

Porphyria (Definition)

The porphyrias are metabolic disorders caused by abnormalities in the synthesis of heme, the portion of hemoglobin which carries the iron inside red blood cells. The manifestations of porphyria vary considerably depending on the mutation involved, ranging from light sensitivity to liver failure to nerve damage to bouts of terrible pain. Special testing is required to ...Read more


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My doctor diagnosed me with porphyria but the porphyria expert said I did not have it.  why would this happen and should I be retested?

My doctor diagnosed me with porphyria but the porphyria expert said I did not have it.  why would this happen and should I be retested?

Porphyria: Testing for porphyria can be very tricky. General medicine doctors can sometimes have difficulty interpreting the test results correctly. If a porphyria expert says you don't have it, that's most likely true. Another option would be to see a different porphyria expert. ...Read more

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Where can I find a porphyria expert?  what other type of doctor can diagnose me properly and what type of specialist should I see if I have porphyria.  

Where can I find a porphyria expert?  what other type of doctor can diagnose me properly and what type of specialist should I see if I have porphyria.  

Porphyria: The doctor that usually takes care of porphyria is a hematologist. The american porphyria foundation will be able to provide you with a list of experts in your area. ...Read more

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When must I call my doctor if the ER said I have acute porphyria?

Acute porphyria: If the er doctor can even pronounce acute porphyria associated with your name then you must let your doctor know as this is a serious condition that needs a medical evaluation ! ...Read more

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I took a urine test and the doctor called back and said I have sugar in my urine, what does this mean. I am a 26 year old male who has common variable immuno deficiency and i may have propheryia or an auto immune disease, does sugar in the urine indictae

I took a urine test and the doctor called back and said I have sugar in my urine, what does this mean. I am a 26 year old male who has common variable immuno deficiency and i may have propheryia or an auto immune disease, does sugar in the urine indictae

Most : Most people don't have sugar in their urine until their blood sugar is 250mg/dl or more. But some people will have sugar in their urine with normal blood levels of glucose. This is called renal glycosuria. It usually has little clinical significance. If your fasting blood sugar is elevated, you may have diabetes. If a blood glucose is done concurrently with finding sugar in your urine, you can sort out if you are just one of those people who spill sugar into the urine at normal blood glucose levels or if you may be diabetic. This should be checked out soon, especially if you are experiencing excessive thirst or frequent urinination. ...Read more

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What is the prognosis of porphyria?

What is the prognosis of porphyria?

Very challenging: Porphyrias are life-long diseases with symptoms that come and go. Some forms of the disease cause more symptoms than others. Proper treatment and avoidance of triggers can help prolong the time between attacks. But attacks are quite painful and can be fatal. Life is a real struggle for someone with porphyria but it is possible to even do great things - some historical figures have suffered it. ...Read more

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What are the symptoms of porphyria?

What are the symptoms of porphyria?

See below: Porphyrias involve three major symptoms: •abdominal pain or cramping (only in some forms of the disease) •light sensitivity causing rashes, blistering, and scarring of the skin (photodermatitis) •problems with the nervous system and muscles (seizures, mental disturbances, nerve damage). ...Read more

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What precipitates a porphyria attack?

What precipitates a porphyria attack?

Depends on the type: There are 8 different kinds of porphyria. Depending on the type of porphyria, an attack can be precipitated by sunlight exposure, alcohol, inadequate diet, carbohydrate restriction, certain drugs or chemicals, hormonal changes & stress. Often a combination of triggers can precipate an attack. For more info, see the porphyria foundation's website: http://www.Porphyriafoundation.Com/about-porphyria. ...Read more

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