Pheochromocytoma: I have Behcet's but my... - Behçet's UK

Behçet's UK

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Pheochromocytoma

fortunate profile image
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I have Behcet's but my consultant suspects I may have a rare tumour on the adrenal gland called a Pheochromocytoma. The symptoms are sporadic spikes in blood pressure despite being on medication and panic like attacks with dizziness, fever, palpitations and weakness in the legs. These symptoms are due to the release of too much adrenalin by the tumour. If it is confirmed I will need an operation to remove the tumour. Fortunately they tend to be benign tumours and the outcome is usually good.

I was wondering if anyone else with Behcet's has been diagnosed with this. My consultant doesn't think they are connected but there appears to be one or two cases in the medical literature where people have had both illnesses. I'm still having mouth ulcers at the same time.

I would appreciate your comments.

Keep well

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fortunate
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nurse_ratchet profile image
nurse_ratchet

I have a relative - non BD, who just had this and elected to have it removed through tiny incisions on the abdomen. It wasn't tricky in his case as his tumor did not cause the bp, heartrate,etc to fluctuate. You need to be referred to a specialist or keep monitoring the growth.

Good luck!

fortunate profile image
fortunate in reply tonurse_ratchet

Thank you so much for getting back to me so so quickly. It is re-assuring to know that it seems to have a good outcome. When you have Behcet's you always think other symptoms may be related. Thank goodness it looks as though it isn't as the disease is bad enough as it is.

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