Pheochromocytoma/adrenal hyperplasia advice needed please

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Hi everyone. I am 33 and have been unwell for quite some time. I have had total thyroidectomy and one parathyroidectomy. I had genetic tests done for multiple endocrine neoplasia which was negative.

The last 4 years I have had symptoms of pheochromocytoma. I used to always have low BP and now I have really high BP for my age and the doctors want to put me on Verapamil for this. I find it bizarre at 33 having high blood pressure.

My symptoms have always been:

  1. Flushing after eating certain foods
  2. Random flushes with palpitations, tachycardia and high BP surges. Flushing is severe and I turn bright red on face, ears, neck and chest. Flushes have become so frequent I have broken blood vessels all over these areas and wear thick makeup to cover it.
  3. Adrenaline surges during medical procedures and surgery which have required me to stay in hospital but at the time they didn't test for pheos etc. They would just monitor me and give me bags of fluid along with benzodiazepines.
  4. Adrenaline surges that come on during times of stress that cause me to shake, tachycardia, high BP and severe headaches along with diarrhea.
  5. Chronic tachycardia. My resting heart rate is 100BPM. When I was younger and before all of this it always sat at 70 and my BP was always 117/77.

Valium, antidepressants, meditation etc does not help these surges. During an attack it is intense and just awful. They are not like classic panic attacks.

Endocrine initially thought carcinoid due to the eating causing severe flushes. That was ruled out. My endocrine doctor treats me as though I am nuts.

I have now had "borderline" elevated urinary metanephrines and "borderline" elevated chromogranin A. Normal urinary cortisol and normal urinary 5hiaa.

Endocrine doctor is still quite dismissive and says the borderline results don't mean much. Which I think is ridiculous. He keeps saying it's highly unlikely I have a pheochromocytoma. But he hasn't witnessed me having these attacks.

Anyway I had a CT done last week and results aren't back yet. When I received the contrast dye....true to form an attack ensued. BP was 203/130, severe flush I was bright red and felt the sense of impending doom etc. Tachycardia the lot. I was given antihistamines which didn't help and ended up having to take a big dose of valium and also prochlorperazine(anti anxiety/anti sickness). It was horrific.

Obviously I do have to wait on the CT results but the endocrine doctor has convinced me I have nothing wrong but I can't keep living like this. I don't know anyone my age that is dealing with this every single day.

Anyone else here with the same issues that turned out to be an adrenal problem?

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  • Posted

    Did you get your CT scan results? Did it show something?

    I have similar symptoms after going to the dentist and getting lidocane/epinephrine injection. It also happened before after a 5 day course of prednisone and the symptoms lasted for 3 weeks. This time is over a month now. My symptoms are so bad I am on medical leave. Adrenaline rushes, tremors, nausea, palpitations, skin is all dried up and my veins are not visible anymore. my feet sweat now and they are cold. No matter how much I eat I keep on losing weight. Went down from 112 lbs to 99 lbs so far. At this pace I feel like I am going to die. My symptoms are worse in the morning and my blood pressure is high in the mornings. I did the blood metanephrine and came back normal now waiting on urine. And the doctor would not do a ct scan unless there is an abnormal test. He agreed to do an abdominal ultrasound which I will do Monday.

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  • Posted

    hey i am exactly same as you theyve found two tumours on my adrenal glands which my gp thinks is secreting hormones which cause these surges ,im waiting further tests and under a rubbish endocrinologist! my bp was allways low now really high even on meds !

    what was your outcome hope things have got better ?

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