Question 1

should doctors be informed that an individual has porphyria, even if it is latent?

Accepted Answer

Definitely yes!: Porphyria can be a serious problem, and latent means it can recur. It is always a good idea to be thorough about any and all medical conditions with your physicians and providers. Open communication can help prevent mistakes and properly focus your care.

Question 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?

Accepted Answer

Porphyria: Your doctor may have based his or her opinion on your symptoms, while the specialist bases his or her opinion on the tests, the only way to know if the symptoms are from porphyria.  The specialist may have some other ideas and tests to help you with your problem.  You are always welcome to get a second opinion, with any unsolved health problem.

Question 3

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.

Accepted Answer

Porphyria: You don't need an expert.  Any competent internal medicine physician should be able to make the diagnosis with a series of urine tests.

Question 4

when must i call my doctor if the er said i have acute porphyria?

Accepted Answer

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 !

Question 5

i fell yesterday and i'm covered in abrasions on my knees arms and hands. i have porphyria. should i visit a doctor or hospital ?

Accepted Answer

: If you have porphyria, you could possess complications such as neuropathy, which might alter your responses to injury, or secondary infection.  Widespread involvement as noted, is best addressed by physicians, and agree with a visit to your doctor or hospital.

Question 6

extremely itchy place 10x5cm on back of hand. no rash/blisters. painfull when touch or scratch. doctor diagnosed shingles. meds does not help. i have porphyria- could this be an attack sudden abnormal hair growth, occasionally red urine. 3 months?

Accepted Answer

Porphyria: Porphyria is a rare disorder and few physicians have significant experience treating it. There is a skin form but other types can have skin involvement also. I think your hand symptoms are caused by porphyria.  I feel you'll have to go to a university hospital to find a specialist in this disorder if you don't have one already.

Question 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

Accepted Answer

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.

Question 8

how is acute porphyria usually treated?

Accepted Answer

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.

Question 9

how is porphyria cutanea tarda  treated?

Accepted Answer

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.

Question 10

what do you suggest if my doctor has told me i have this,is this something that is treatable?

Accepted Answer

Having THIS: Ask your doctor what he/she suggests for treatment.

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Doctor answers about:

Which doctors treat porphyria

A member asked:

Should doctors be informed that an individual has porphyria, even if it is latent?

A member asked:

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?

A member asked:

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.

A member asked:

When must i call my doctor if the er said i have acute porphyria?

A member asked:

I fell yesterday and i'm covered in abrasions on my knees arms and hands. i have porphyria. should i visit a doctor or hospital ?

A member asked:

Extremely itchy place 10x5cm on back of hand. no rash/blisters. painfull when touch or scratch. doctor diagnosed shingles. meds does not help. i have porphyria- could this be an attack sudden abnormal hair growth, occasionally red urine. 3 months?

A member asked:

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

A member asked:

How is acute porphyria usually treated?

A member asked:

How is porphyria cutanea tarda treated?

A member asked:

What do you suggest if my doctor has told me i have this,is this something that is treatable?

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