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Doctor insights on: Which Doctors Treat Porphyria

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Dr. Aletha Tippett
91 Doctors shared insights

Porphyria (Definition)

Metabolic disorders caused by abnormalities in the synthesis of heme, the portion of hemoglobin which carries the iron inside red blood cells. Symptoms can range 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.

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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.

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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.

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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!

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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.

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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.

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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.

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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.

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What is porphyria and how can it be treated?

What is porphyria and how can it be treated?

Dermatology: Group of 8 different inherited disorders in which enzymes responsible for heme synthesis are deficient or absent. As a result, porphyrins are produced, accumulates in tissues, excreted in urine, stool. S/s: nausea, vomiting/constipation, abd. Pain, muscle weakness, seizure, photosensitivity, scar, anemia, etc. Rx: adequate nutrition, hydration, avoid sunlight/some drugs/alcohol. Follow mds advise.

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I have lymphedema and my doctors told me it was treatable. Where can I go to find more info. On lymphedema?

I have lymphedema and my doctors told me it was treatable. Where can I go to find more info. On lymphedema?

Lymphedema: I would investigate the topic on the Internet, as there are numerous patient focused websites dealing with this issue.

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Hi doctors, was just wondering what is a fissure on your colon and is it treatable?

Hi doctors, was just wondering what is a fissure on your colon and is it treatable?

Anal fissure: Anal fissures are essentially cracks in the lining of the anal canal that develop due to trauma, most commonly passage of dry hard stool. It is definitely treatable. Many topical medications have been tried with varying success rates. A short surgical procedure called tailored lateral internal sphincerotomy has the best success rates.

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What is Chloride Diarhea? What's is causes? Is it treatable? My child 4 years old have this, Doctor says it untreatable. Guide me Please..

What is Chloride Diarhea? What's is causes? Is it treatable? My child 4 years old have this, Doctor says it untreatable. Guide me Please..

.? cyclosporidium: Classic chloride losing diarrhea, e.g., cholera, is amenable to fluid and antibiotic treatment. Diarrhea by cyclosporidium in normal children often clears by itself, however, immunocompromised individuals continues to have diarrhea for an indefinite period.

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Doctor diagnosed me with hiatus hernia. Is it curable or treatable? Some advice on what to do and what will be done with me?

Doctor diagnosed me with hiatus hernia. Is it curable or treatable? Some advice on what to do and what will be done with me?

Very treatable: You have a hiatal hernia. You are 19. This is a very treatable abnormality. Your doctor will treat your symptoms and follow with you. If you are feeling well with medications then he/she will follow. As you age you may require more intervention. You may need a diagnostic study. You will need to manage your weight and to exercise. Watch what you eat. Be well.

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Should I see a doctor for chronic sinusitis? I was diagnosed with chronic maxillary sinusitis while I was in the military and at the time they said there was not much they can do about it - is chronic maxillary sinusitis treatable? If so is it through otc

Should I see a doctor for chronic sinusitis? I was diagnosed with chronic maxillary sinusitis while I was in the military and at the time they said there was not much they can do about it - is chronic maxillary sinusitis treatable? If so is it through otc

Chronic: Chronic sinusitis includes nasal obstruction, sinus pain and pressure around the eyes, nasal drainage, chronic cough, fatigue, headache, nose bleeds and several other symptoms--you do not need them all. These symptoms are persent more often than not for at least 3 months. You may also get exacerbations that worsen all of the symptoms temporarily making it feel more like an acute sinusitis. Chronic sinusitis is treated with several meds at the same time: nasal steroid spray, antihistamine, nasal saline irrigations, prolonged antobiotics (4-6 weeks). If you don't feel better, then a sinus ct scan can solidify the diagnosis. Those that do not respond to maximal medical therapy may be candidates for sinus surgery. Surgery is normally very successful but often is not a cure but help alleviate many of the symptoms, making them easier to treat.

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Hello doctor, a 10 years old boy diagnosed with WBC count of 450000+ and found affected with acute ll. Can it be treatable?

Hello doctor, a 10 years old boy diagnosed with WBC count of 450000+ and found affected with acute ll. Can it be treatable?

Yes: With proper medical care the success rate for treating all has increased tremendously over the last 3 decades. Seek early consultation with specialists for the best outcome.

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The white of my eyes is little yellowish since long time, liver problems excluded by the doctor. What is that? Is it treatable?

The white of my eyes is little yellowish since long time, liver problems excluded by the doctor. What is that? Is it treatable?

Small areas: If these are small yellow spots on the corner of the white part of the eye they are called pinguecula, to prevent worsening use sunglasses. Treatment rarely requires surgical removal but can be done. First start with either artificial tear drops and if inflamed use short term mild steroids.