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daisy1 daisy1

Phaeochromocytoma difficult to get a diagnosis

I have been suffering a headache every day for the last 12 months, the specialists have blamed it on everything from thyroid trouble to cluster headaches, eye strain & migraines. All of which have proved totally wrong. I am positive that at first my GP & the \"experts\" thought I was making it all up. But after 10 months of taking every tablet invented, my GP spent an evening of his own time trying to find what it might be.

After 4 x24hour urine tests the only showed a positive reading for 2 out of the 4 tests. It was then down to a a chromogranin A blood test, which had to be sent to a special lab in London (none in Scotland where I live) and took 7 weeks to come back that my GP was proved correct and it seems to be phaeo.

To confirm this I have now got to have a MIBG scan which puts a low doseage of radio active isotope into you, you have 3 scans over a 48 hour period. Only then will they be certain that I have it.

So then you have to wait on a surgeons list. So it looks like I could be having daily headaches for another 3 months, at least.

5 Replies

  • Merryl Merryl

    Hi, I am glad I came across your story. I am thinking about having the CHROMOGRANIN A test done to rule in or out a Pheo. I heard about this test quite a while ago, but I don't think my local GP performs the test. So I will have to go to a private hospital. But, I will ask my Dr first.

    Did the test show you had a Pheo? I would be interested to know, if you don't mind.

    Best Wishes

  • Guest Guest

    Dear daisy1,

    This is Dr. Pheo. I am a specialist in pheo.

    Although you do have 2 out 4 urine test results \"positive\" and an elevated chromogranin A, my index of suspicion is not that high for pheochromocytoma. The extent the markers are elevated are also very important to help determine if you have pheo. I guess the extent of elevation of the urine markers are not very high for you because you even have 2 normal test results.

    The issue with chromogranin A is that it is elevated in any one who is taking antiacid treatment like a proton pump inhibitor or H2-blocker. One of the most common false alarms in my practice is an apparently elevated chromogranin A in a patient on antiacid treatment.

    I recently started a blog at ****, where I'd like to discuss with patients and colleagues about pheo. You and your friends are welcome to visit and to post questions and comments.

    Best regards,

    Dr. Pheo

    [color=green:413b003d9a][i:413b003d9a][b:413b003d9a][size=9:413b003d9a](Sorry but Patient Admin have removed either a telephone number, an email address, and or web address, from this posting, as it is the policy of Patient UK not to publish these on this forum.)[/size:413b003d9a][/b:413b003d9a][/i:413b003d9a][/color:413b003d9a]

    • LongJourney LongJourney Guest

      Hello Dr. Pheo,

      I saw your post. What can you please tell me about PseudoPheochromocytoma? Can you tell me the name of any specialist located anywhere in the United States (other than Dr. Mann in New York) who diagnoses and treats this condition? Thanks so much!

  • Sonia22 Sonia22

    The best tip for getting a possible pheo to be investigated to to be very

    bloody minded! If you do have a pheo this will not be difficult the excess adrenalin will make it easy and please keep a diary of your symtoms write down anything that affects you on a daily basis and take it to your doctor. If you have just had a baby or lost a baby this could be put down to just depression or just being a typical woman. Prior to removal of a pheo anger temper bloodmindedness love of danger addication to the adrenalin fix that makes a high is great but when the systoms get bad sweating shaking overheating and opening all the windows at the office or home even in the depths of winter does not make you too poplar! violent sickness with ones head over the loo is not nice! My pheo took ten years to be diaognosed but a soon as it was diagnosed about 1983 my feet did not touch I was rushed to St Thomas's Hospital London where they eventually removed my benign tumour the size of an orange which was on my right adrenal gland coping with life after removal is quite dificult I became more emotional had great difficulty coping with any stress and great sensitivity to any drugs expecially steroids. Good Luck hope your condition is clarified very soon Sonia

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