Top 10 Things to Know About Adrenal Vein Sampling for Primary Hyperaldosteronism (Conn's Syndrome) – Part I
Primary hyperaldosteronism, or Conn’s syndrome, is due to overproduction of the very toxic hormone, aldosterone, from the adrenal glands. The disease can be due to a single tumor on one of the adrenal glands (left or right) or too much aldosterone from both adrenal glands.
Read more about primary hyperaldosteronism, or Conn’s syndrome, here.
Adrenal vein sampling is an X-ray study to figure out
- Does the patient have too much aldosterone production from one or both adrenal glands?
- Which adrenal gland harbors the tumor, the left or right?
This blog post is very comprehensive and thus is split up in two parts. This is part one and you will find a link to part two at the bottom of this post.
Top 10 Things to Know About Adrenal Vein Sampling for Primary Hyperaldosteronism - Part I
Adrenal vein sampling is an interventional radiology study performed by radiologists trained specifically in performing invasive procedures using catheters. Adrenal vein sampling is used in patients with primary hyperaldosteronism (Conn’s syndrome) when the adrenal CT scan does not show a tumor (the tumor is too small to be detected on a CT or MRI scan) or in patients who have adrenal tumors on both the right and the left side. Through small catheters, blood samples are obtained from each adrenal vein and the inferior vena cava. In experienced centers, the bilateral adrenal veins are catheterized and sampled with a technical success rate exceeding 90%. Technical success is directly associated with operator experience. You want the best possible interventional radiologist to perform your adrenal vein sampling. The Carling Adrenal Center in Tampa has the world’s best IR doctor and team to perform adrenal vein sampling. Adrenal vein sampling is recognized by Endocrine Society (U.S.) guidelines as the only reliable way to correctly diagnose the subtypes of primary hyperaldosteronism.
A positive adrenal vein sampling enables curative adrenal surgery for primary hyperaldosteronism (Conn’s syndrome). The best adrenal operation is the Mini Back Scope Adrenalectomy (MBSA). Read more about the MBSA surgery here.
1) You need to find the most experienced interventional radiologist to perform your adrenal vein sampling
Similar to adrenal surgery, performing adrenal vein sampling is both an art and science. There is a very strong correlation between the expertise and experience of the interventional radiologist and the results of adrenal vein sampling. The most expert centers for adrenal vein sampling has a technical success rate exceeding 90%. The technical success is directly related to the operator experience. Your job and the job of your doctors are to find the most experienced interventional radiologist to perform your procedure. An expert interventional radiologist has a much higher success rate, lower complication rates and can perform the procedure much faster than somebody who is not an expert. There are very few experts performing adrenal vein sampling in the United States, less than a dozen. If you have primary hyperaldosteronism, it is definitely worth traveling to an expert center for your adrenal vein sampling. Every week we see cases where the patient has had an adrenal vein sampling for Conn’s syndrome performed erroneously and the results become meaningless. Even worse, we sometimes see patients who have suffered major complications with bleeding, hematomas, and rupture of the adrenal veins. You do want to travel for your adrenal vein sampling. It is very unlikely that your local hospital has any expertise in performing adrenal vein sampling. In fact, the experience at most major Ivy League university hospitals is lacking. Fortunately, at the Carling Adrenal Center in Tampa, we have the best interventional radiology team that performs Adrenal been sampling all the time.
Indeed, we are the only center in the world where the patient can come in for adrenal vein sampling, and then have curative adrenalectomy during the same visit.
Figure 1. Adrenal vein sampling is performed by an interventional radiologist in an interventional radiology (IR) suite. These types of doctors are radiologists with special training in using X-rays and performing procedures with tiny catheters.
2) Not all patients with primary hyperaldosteronism (Conn’s Syndrome) need adrenal vein sampling
Not all patients with primary hyperaldosteronism need adrenal vein sampling. Patients who are young, have an obvious tumor on the CT scan, and with a completely normal adrenal gland on the other side, do not need the study. They can go straight to curative adrenalectomy and skip this step. Similarly, patients who respond very well to spironolactone and similar drugs and have very high aldosterone levels almost never need adrenal vein sampling. They can go straight to adrenal surgery.
What do I do if I am unsure if I need adrenal vein sampling, or not? After you have had your CT scan of your adrenal glands, you can always contact the Carling Adrenal Center and will be happy to evaluate your case and your CT scan and determine whether or not you need adrenal vein sampling. If you need to have the procedure, we can perform both the adrenal vein sampling and the surgery during the same visit. We are the only center in the world that can provide this service. In close to 100% of the patients with primary hyperaldosteronism the best operation is the Mini Back Scope Adrenalectomy (MBSA).
Figure 2. Tiny catheters are placed through the femoral vein (groin) and into the inferior vena cava, and the left and right adrenal veins. Blood samples for measurements of aldosterone and cortisol (serves as control) are obtained. Adopted from reference Monticone S. et. al. Lancet Diabetes Endocrinol. 2015
3) Adrenal vein sampling should not be performed for patients with Cushing’s syndrome (cortisol-producing tumors) or pheochromocytoma (adrenaline-producing)
Adrenal vein sampling is only used in patients who have primary hyperaldosteronism (Conn’s syndrome) There is no role for adrenal vein sampling in patients who have cortisol-producing tumors causing Cushing’s syndrome or adrenaline-producing tumors causing pheochromocytoma. If your doctor wants to send you for adrenal vein sampling and you have any of these conditions, do let us know. We would be happy to speak to your doctor. Alternatively, print out this page and show it to your doctor. Adrenal vein sampling is only helpful for aldosterone-producing tumors. It should not be performed for Cushing’s syndrome and pheochromocytoma. It is true that adrenal vein sampling has been scientifically evaluated in Cushing’s syndrome due to adrenal tumors on both adrenal glands. However, it is useless, and the patients with tumors on both adrenal glands are much better off having partial adrenalectomy, dealing with both adrenal glands.
Read more about Cushing’s syndrome here.
4) Having a specific adrenal-protocol pre-procedure CT scan prior to adrenal vein sampling improves the results and success rate
It is very important to have a specific adrenal-protocol CT scan prior to adrenal vein sampling since it improves the technical success rate dramatically. The reason for this is that the CT scan gives very detailed anatomical information about the tiny adrenal veins, specifically the right adrenal vein. The CT scan guides the interventional radiologist during the procedure and allows him to accurately identify the tiny vessels. Dr. Carling and his radiology colleagues at the Carling Adrenal Center have developed a very specific pre-procedure CT scan protocol that dramatically improves the success rate of adrenal vein sampling. If your center does not offer an adrenal protocol pre-procedure CT scan in preparation of your adrenal vein sampling, chances are the success rate is very low and you should consider going elsewhere. Remember, this is a procedure that you should strongly consider travelling for. There are very few centers in the world that have any meaningful experience performing adrenal vein sampling for primary hyperaldosteronism (Conn’s syndrome).
5) Do not let your doctor just treat you with blood pressure pills because he or she cannot find a center to perform adrenal vein sampling.
This may be the most important thing every patient with primary hyperaldosteronism need to understand. Every single week, we talk to patients that have been told that they are just going to be treated with blood pressure pills for their primary hyperaldosteronism for the rest of their lives. Their doctor does not know what to do next, how to find someone to perform adrenal vein sampling, and they have given up. They settle for treating the patient just with blood pressure pills. This is terrible medicine, and horrific advice. Many doctors are not knowledgeable about primary hyperaldosteronism and do not understand when adrenal vein sampling should be performed. Other doctors are afraid to send patients for adrenal vein sampling or do not even know who to send the patient to. The path of least resistance is to just treat the patient with blood pressure pills. This is terrible advice. Patients with primary hyperaldosteronism have a more than 1,000% increased risk of heart attack, stroke, and heart arrhythmias. Patients die prematurely from primary hyperaldosteronism. Putting patients on pills for primary hyperaldosteronism is akin to putting a Band-Aid on a major bleeding artery. It is not going to fix the underlying problem. The underlying problem is the tumor that produces too much aldosterone. Primary hyperaldosteronism cannot be cured until the tumor is removed. Treating the disease with pills does not remove the tumor, it just treats the symptoms. The toxic aldosterone levels are still too high and damaging to every cell of the body. Even if your CT scan shows tumors on both adrenals, or the CT scan shows no tumor at all, do not let your doctors just treat you with pills. You need adrenal vein sampling. Adrenal vein sampling has a very good chance of identifying disease that can be cured with surgery. There is a great possibility the adrenal vein sampling will identify the causative tumor, and that you can be cured by adrenal gland removal (adrenalectomy).
Reference:
- Monticone S, Viola A, Rossato D, Veglio F, Reincke M, Gomez-Sanchez C, Mulatero P. Adrenal vein sampling in primary aldosteronism: towards a standardised protocol. Lancet Diabetes Endocrinol. 2015 Apr;3(4):296-303. PMID: 24831990. https://pubmed.ncbi.nlm.nih.gov/24831990/
Additional Resources:
Learn more about the Carling Adrenal Center
Learn more about Dr. Tobias Carling
Learn more about our sister surgeons at the Norman Parathyroid Center, Clayman Thyroid Center and Scarless Thyroid Surgery Center