The Tests You Will Take

You may already be diagnosed with P.H. If so you will have to go through a very long series of tests before they can give you the proper treatment, which may include surgery. It can take less time if you have a super-endocrinologist who really understands Conn's and wants to help you get better fast. These types of doctors are rare and hard to find. And if you are like me, you will find yourself at the mercy of the doctors offices, not just your doctor, and let me tell you, those medical staff people can make or break you. They have far too much power for so little training. My endocrinologist's office has made numerous errors, including making appointments before having me get blood work or urine collection. And then they make you feel like getting an appointment (after they screwed up, mind you) is a privilege. It's not, and it is your right as a patient. Wasted time can cost you a lot when you are in pain and feel hopelessly off-kilter. You need to become your own advocate (see my below blog on helpful tips with that).

My second endocrinologist (I'm on my 3rd), told me if I didn't follow the order of the tests, it would seriously delay diagnosis and treatment. He was right on that accord. But what he forgot to tell me was what to do in the middle of all the tests. How do I get through my days when I can barely concentrate or remember simple things. Unfortunately, I had to take care of all that on my own, and it's been a very long, sometimes depressing road. If I may be so bold--I recommend going on anti-depressants while you are undergoing all these tests. It can take up to a year to make the right diagnosis and you need to take care of your emotional well-being in the meantime. I've never been a huge fan of them, but recently I feel they may have saved my life. Each patient is different so it's best to talk to your G.P., maybe not your endo because he's only there to deal with your endocrine system, not your head. However, if your endo is an empathetic person, it's certainly worth asking.

In the meantime, here is a list of tests that most endocrinlogists have you take before making a decision about surgery vs. a life-long commitment to medication. The tests can start out in different order with different doctors.

Hyperaldosteronism Tests:

1) Lots of blood work which may be requested weekly or bi-weekly at times.

2) Blood renin tests that are sometimes done in conjunction with the regular blood work.

3)CT scan. This is how they found my tumor, although if your doctor suspects P.A., he will have you take this to be sure.

4) MRI- A surgeon will often request this to see the tumor better (CT's can be rough).

5)Saline-Suppression Test, or Oral Salt Loading Test (it's usually either/or)

6)24-hour urine collection: The test is done to see how much aldosterone is released into your urine.

7)Fludrocortisone suppression test (FST). After you've followed a high-sodium diet and taken fludrocortisone — which mimics the action of aldosterone — for three days, aldosterone levels in your blood are measured.

8)Adrenal Vein Sampling: This is the most reliable test for determining the cause of primary aldosteronism. A radiologist draws blood from both your right and left adrenal veins and compares the two samples. Aldosterone levels that are significantly higher on one side indicate the presence of an aldosteronoma on that side. Aldosterone levels that are similar on both sides point to overactivity in both glands-(this is not great news).

9) Pheochromocytoma Urine Collection: A pheochromocytoma is a rare catecholamine-secreting tumor. Tumors that form outside the adrenal gland are termed extra-adrenal pheochromocytomas or paragangliomas. Because of excessive catecholamine secretion, pheochromocytomas may precipitate life-threatening hypertension or cardiac arrhythmias. If the diagnosis of a pheochromocytoma is overlooked, the consequences could be disastrous, even fatal; however, if a pheochromocytoma is found, it is potentially curable. You will take a urine test (pee in a jug for a day) to determine this.

There may even be more, but thus far these are the ones I have taken. I'm off to my endo tomorrow for results on the AVS and urine collection. Am nervous but hopeful that this will all be over sooner than later.