Get Tumor Tested!

It's a simple blood test. There's no reason not to know. 

The American Heart Association reports more than 100 million Americans have hypertension.

Estimates vary, but of those 100 million, as many as 10 million people actually have a non-cancerous adrenal tumor that causes hypertension by producing too much of a hormone called aldosterone. 

This condition is usually called primary aldosteronism (PA). Sometimes you'll see it referred to as primary hyperaldosteronism or Conn's Syndrome. They all mean the same thing.

Most patients with PA will never be diagnosed.

Without correct treatment, undiagnosed patients may suffer heart attacks, kidney failure or other complications.

Primary aldosteronism can be cured in many cases. Even when it can't, proper treatment improves quality of life and reduces the risk of complications.

Ask your doctor about being tested if you meet any of the following criteria:

• Sustained blood pressure above 150/100 mm Hg on each of three measurements obtained on different days;
• Hypertension that doesn't respond to three or more medications (including a diuretic);
• Hypertension and spontaneous or diuretic-induced hypokalemia (also known as low potassium);
• Hypertension and adrenal incidentaloma (also known as an adrenal tumor or adrenal adenoma);
• Hypertension and sleep apnea;
• Hypertension and a family history of early onset hypertension or stroke at a young age (below 40 years)
• You have a first-degree relative with primary aldosteronism.

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Sources:
https://www.heart.org/en/news/2018/05/01/more-than-100-million-americans-have-high-blood-pressure-aha-says


https://emedicine.medscape.com/article/127080-overview#a1


https://www.ahajournals.org/doi/10.1161/CIRCULATIONAHA.118.033597


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5175479/


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5686599/


https://www.ncbi.nlm.nih.gov/books/NBK499983/

About us: We are patients who have committed to improving the diagnostic rate for primary hyperaldosteronism. We receive no funding from any medical special interest and earn no financial benefit from our site. This page and our social media presence is funded out-of-pocket.

Disclaimer: We are not physicians and this information does not constitute medical advice. Information presented is pulled from medical sources linked above. It does not come directly from a doctor. The information presented is not intended to prescribe treatment, testing or medication. Nor does the information take into account an individual patient's unique circumstances. For a full assessment of your health, speak to your doctor.

My Story: How I Was Diagnosed with Primary Aldosteronism

My whole life I've had super low blood pressure, but all of a sudden at age 35, I had hypertension. It happened overnight. One day, it was nice and low and then the next, it was high.

I always felt that the cause of my hypertension was hormonal. In fact, I knew there were adrenal tumors that could cause hypertension and encouraged family members who met the diagnostic criteria to get tested (which to this day they have yet to do!).

Doctors told me it was my weight. So I lost a huge amount of weight, exercised, ate right--the works-- and instead of that lowering my blood pressure, it actually went up! I needed a third medication.

When I asked about it, I was told, 'Oh that just happens sometimes.'

Here I was doing everything right only to have my blood pressure go in the wrong direction and when I pointed that out...

They moved the bar!

What I didn't know--during the ten years medicine failed to diagnose me--was that the adrenal tumor actually showed up on CT scan, but it was never noted in the radiology reports. Meaning, no one told me or my doctors. It was dismissed as a meaningless 'incidentaloma.'

Ten years later an endocrinologist told me it had been visible the whole time!

Around the eight year mark, I asked to be put on spironolactone. I have several endocrine issues and more than one adrenal issue, so I figured spironolactone would help just in general.

Suddenly, I had beautiful blood pressure. I didn't think I had PA because, as far as I knew, I had no adrenal tumor and my bp had never been super high, just difficult to control. Little did I know...

Anyway, fast forward a few more years when I was diagnosed with another set of tumors elsewhere and the adrenal tumor finally made it into a radiology report.

Ten years after it first appeared.

Did doctors finally diagnose me at that point? No! Of course not! They were still dismissing it as unimportant and no one was synthesizing the totality of my medical history.

However, I knew better, and once I knew I met the diagnostic criteria, I made them run the tests.

Sure enough...primary aldosteronism was and is my diagnosis.

Get Tumor Tested: How to get diagnosed when doctors won't listen

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Sometimes doctors don't listen, or patients may live in a 'medical desert' where it's difficult to get in to see a doctor, or they may be uninsured and unable to access a physician without great expense.

In those situations, private lab testing may be an option. You pay out-of-pocket for the lab test, but it's much cheaper than going to the doctor. At the moment, it costs about $130 to test for primary aldosteronism.

The key is to know your medications. Many medications can interfere with the blood work for primary aldosteronism. If you take prescription medications and/or over-the-counter medications regularly, check with your pharmacist to see if any would affect testing for renin and aldosterone.

Note: Do not discontinue any prescription medication without your doctor's advice. If a medication conflicts with blood work for primary aldosteronism, ask your doctor for the next step.

Once you know your medications and how they might affect blood work, you can then search for a private lab or private blood work in your area. There are national companies that will order the testing for you at various national labs. Some even offer a package for 'Conn's Syndrome' which is another name for primary aldosteronism.

The following should be tested at mid-morning after you've been awake for two hours:

Aldosterone
Renin
Aldosterone: Renin Ratio

Once you have the test results, you can take them to the doctor to, hopefully, give them more insight into your health. Results will also help you know when to keep pushing or if you should travel to see specialists...especially for patients who live in areas with few specialized medical resources.

It's a simple blood test. There's no reason not to know.