Most doctors know little to nothing about porphyria.   They can hardly be blamed, though, as it is so rare.  But, that really causes us lots of problems.  I have found a few that know about it; and, it really makes sense how it has worked out.

Hematologist – Of course, a blood doctor should know about porphyria.  My hematologist tested me positive for porphyria; now, I have an advocate!  The test was the 24 hour urine test; I tested positive & I wasn’t even having an attack.  He said this is the first positive urine test from any of his porphyria patients.  I am truly blessed for having taken the risk to schedule an appointment with him.

Neurologist – had a nerve conduction test in relation to carpal tunnel.   This doctor was very familiar with porphyria.  He said that he generally sees people who suffer from porphyria as a result of seizures caused by antibiotics.  Antibiotics are scary things for us.

Dermatologist – I went to see a dermatologist as a result of bacterial infection on my skin.  He was very familiar with porphyria, especially the cutaneous types.  That makes sense.  He was not very familiar with AIP; but, he did understand my problems with antibiotics.

Dentist – My dentist is very conversant in porphyria; I should ask him if he has just done some good research or has had other patients…probably the latter, as  I seem to remember that he knew about it the first time I brought it up.   He may be unusual, though.

Liver Specialist – NOT!   I saw one of the foremost liver specialists in Atlanta & he was contrary & clueless.   He made me very sick; I ended up in the hospital with pancreatitis.

Gastroenterologist – NOT!  I saw several of these clowns.   They, too, were contrary & clueless….and, made me very sick.

General Practitioners – talk about hit or miss.  I even had one suggest that I induce an attack so he could run a blood test on me.  I have found that I get much better care asking to see the PA.

Opthamologist – Maybe I am just lucky.  But, when I told my opthamologist about porphyria, she researched it to find out what signs to look for in my eyes.  It is amazing the medical problems that can be determined by examining the eyes.

Before I had an official medical advocate, I used to just tell medical folks that I had irritable bowel, hypoglycemia, various allergies, etc.  It caused a lot less friction.  We were all much happier with their ignorance.

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10 Responses to Doctors

  1. Chelsea says:

    Hi. I have been reading your posts about porphyria since discovering this blog and I’d love to follow your blog. If you don’t mind followers, could you add the RSS Links widget to your page?

  2. Stina says:

    The doctor frustration is ever present. My general practitioner is clueless and I agree that you cannot get too mad, they are human. However, he is willing to listen to me and go by my suggestions as to what would be best for me, sort of a teamwork effort. Hold onto any doctor who is familiar! On the subject of clueless doctors, I need to get a MedAlert necklace or something so that in the event that I must go to the ER (those places are so dangerous) I would have more than just a card in my wallet with the important info (still a great defense that I would recommend to anyone with a condition) I have to wonder how many of us are wearing those.

    • Greg says:

      I really like my hematologist. However, he is not steeped in knowledge of porphyria. His focus has to be on the vast majority of his patients. But, he and his staff spend a lot of time talking with me to come up with options. It is still up to me to do a lot of research & ask questions.

      He is getting a little less assessable & slower to respond to emails; I think it has to do with all of the changes to the medical & insurance laws.

  3. Derek says:

    Stina’s husband here:

    We now carry a wallet card with pertinent information regarding her porphyria:
    Safe Drugs
    Unsafe Drugs
    Porphyria-aware doctor’s number

    After a long night in the ER with a foot injury that triggered a porphyric attack, we decided that this was a good option if she were to have an attack when I am not around.

    • Greg says:

      That is a great idea. In case she is unconscious & you aren’t there. I’ve got a card in my wallet, too; but, I’ve got to re-do it, as it is smaller than a credit card. When I get it right, I’ve got a roll of self adhesive laminate to protect it.

      Is yours black & white or did you use any bold, attention getting colors?

  4. Betty says:

    I have just found out that I have porphyria!
    For over 2 years I have had these attacks and testing they thought I had PNH. Although it didn’t show up in my blood test but had the symptoms of PNH.
    Finally found a kidney doctor that was awesome doctor. He found a Hematologist and they did testing and found out I have Porphyria.
    So I have been on the quest of finding out what I can about this disease.
    On some days I feel so weak and on those days I don’t do much.
    I don’t seem to have problem with red meats, sometimes chicken will cause me to have
    I didn’t know food was my enemy till I read your blog.
    Chocolate dark or light doesn’t seem to bother me.
    Can’t drink coffee but have a coke once a day. I do this mostly to have energy.
    Thanks for the blog. Now I know others with this problem do exist.

    • Greg says:

      Betty, I am sorry to hear that you have Porphyria; but, it is better to know what you are fighting. I really get tired of it; but, identifying a safe diet and sticking with it, has really helped me. Yes, I would kill for a taco or big hamburger. Oh, and a glass of pino noir. Even with all the triggers eliminated, there are times that I feel yukky or even have minor attacks.

      There are other sufferers out here; but, the only ones that I know personally are family members. You will probably find the same situation. It is important that you have folks around that understand and keep an eye out for you. Sometimes, I will be starting to slip & someone will suggest that I eat something.

      Keep up the fight!


  5. Christena says:

    Greg, I am trying to find a doctor that can diagnose what I now realize has been AIP all these years. I read above that you mentioned Atlanta in one of your posts. Does that mean you have a good hematologist in Atlanta that you could suggest to me?

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