Top
10
Doctor insights on: Which Doctors Treat Porphyria

Share
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


2

2
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

See 1 more doctor answer
3

3
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

See 1 more doctor answer
4

4
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

See 1 more doctor answer
6

6
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

7

7
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

See 1 more doctor answer
8

8
How is acute porphyria usually treated?

How is acute porphyria usually treated?

Supportive care: Glucose and hematin derivatives can be used to manage the acute attacks. The key to treatment is patient education -- it's a lifetime of learning to avoid the triggers and becoming more familiar with the illness than a physician specialist. ...Read more

9

9
How is porphyria cutanea tarda treated?

How is porphyria cutanea tarda  treated?

See below: Pct is the most treatable of the porphyrias. Treatment seems to be equally effective in familial and non-familial pct. Factors that tend to activate the disease should be removed. The most widely recommended treatment is a schedule of repeated phlebotomies (removal of blood), with the aim of reducing iron in the liver. This actually reduces iron stores throughout the body. ...Read more

10

10
What kind of specialist diagnoses and treats different types of porphyria?

What kind of specialist diagnoses and treats different types of porphyria?

Porphyria: See a neurologist or a dermatologist at a university teaching hospital. ...Read more