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Conn's Syndrome

Mission Statement:
The Nate Holsey, Jr. Foundations was set up to share information about
Conn's Syndrome. To let you know that fifteen percent of the people with
Hypertension may have Conn's Syndrome and may be cured of Hypertension.

My name is Nathaniel Holsey, Jr. I am 61 years old. I’ve had Hypertension (High Blood Pressure) for more than twenty years. In 2006 my primary physician, referred me to an Endocrinologist at Winchester Medical Center, I was diagnosed with Conn’s Syndrome or primary hyperaldosteronism. I talked this problem over with my physician and he told me not to worry, just take the prescription medicines and I would be all right. In July 2009 I was diagnosed with Diabetes, immediately I was put on Actos and Metformin. I was already taking five different Blood Pressure medicines, a total of 14 pills a day. My physican referred me to a foot care specialist , eye care specialist and a Kidney Specialist. The Kidney Specialist told me that if I kept on taking prescription medicines eventually it would affect my kidneys and bladder. The Kidney Specialist sent me to the clinic at Winchester Medical Center in Virginia and I had to do a 24-hour Urine Collection and drink one 450ml bottle of Barium Sulfate and took a CAT scan the following day. On Friday, September 18, 2009 at Winchester Medical Center, I had a procedure done called, Adrenal Vein Sampling with Stimulation (see below). This surgery confirmed what we already knew three years prior, that I had Conn’s Syndrome. On 11/17/2009 my operating physican removed the benign tumor and my left Adrenal Gland with laparoscopic surgery. The tumor was the size of a fingernail, which caused secretion of the hormone aldosterone into my blood that caused my Hypertension. I was taken off Actos as soon as my surgery was over. In less than two weeks I was taken off all the High Blood Pressure medicines. I was also taking 1000 milligrams of Metformin twice a day, now I take 500 milligrams once a day for Diabetes. My operating physican told me that when I see my physican in January, he would most likely take me off the other medicines. I had my three-month (1/18/2010) doctor visit and was taken off Metformin and now I am pill free. I find it hard to believe I don't have to take pills anymore especially when I was always told that I would be on medications the rest of my life. The operation was certainly a success and I feel great. I have so much more energy, I walk everyday and don't get tired like I use to. I even started back playing basketball. I thank God for giving me a new lease on life and all the doctors, nurses and volunteers that made my stay at Winchester Medical Center a memorable experience and a special "thank you" to the nurses at the Dorothy McCormack Center and Dr. Zuniga. Conn's syndrome is important because it is a potentially curable cause of high blood pressure. Some studies suggest that Conn's syndrome is rare (one new case in a million people each year). However, when detailed investigations have been performed in-patients with high blood pressure, up to 15 per cent may have this condition. Feels free to email this info to everyone you know. If you have hypertension get checked by an Endocrinologist or a Kidney Specialist to see if you have Conn's Syndrome. Hypertension and Diabetes are clearly, serious major public health problems that affect the young and old.

What is Conn's syndrome?
Conn's syndrome is a disease of the adrenal glands involving excess production of a hormone, called aldosterone. Another name for the condition is primary hyperaldosteronism.
Conn's syndrome is important because it is a potentially curable cause of high blood pressure (hypertension). Some studies suggest that Conn's syndrome is rare (one new case in a million people each year). However, when detailed investigations have been performed in patients with hypertension (high blood pressure), up to 15 per cent may have this condition.

Why or how do I get Conn's syndrome and what is its course?
The excess secretion of the hormone aldosterone into the blood is from an abnormal adrenal gland or glands. Two types of abnormality are seen: a benign tumour of one adrenal, called an adenoma or a general enlargement of both adrenals, called hyperplasia.
The underlying reasons for the development of an adenoma or hyperplasia are not known.

What are the symptoms?
High blood pressure (hypertension) is the main, and often the only, symptom.
Other symptoms may occur because high aldosterone levels in the blood act on the kidney to increase the loss of the mineral potassium in the urine. This in turn may lead to a fall in blood potassium, resulting in tiredness, muscle weakness and passing of large volumes of urine (polyuria), especially at night (nocturia). However, these symptoms are also found in many other conditions (for example, diabetes mellitus or hypercalcaemia) and do not, by themselves, establish a diagnosis of Conn's syndrome. Also, many patients with proven Conn's syndrome do not have a low blood potassium level.

How is Conn's syndrome diagnosed?
Conn's syndrome should be suspected in all patients with high blood pressure.
Traditional teaching has been to limit investigation for Conn's syndrome to patients who have a low blood potassium, or in whom blood pressure which is moderate to severe (>160/110mmHg), or is difficult to control with medication. However, using these criteria, many patients with Conn's syndrome will not be diagnosed. For example, about 40 per cent of patients with proven Conn's syndrome have normal blood potassium levels.
The most rigorous method of diagnosis is to measure the blood levels of two hormones: aldosterone and renin (which plays a role in stimulating aldosterone production). In Conn's syndrome, the aldosterone level is elevated and the renin level is low or undetectable.

What else could it be?
The commonest cause of high blood pressure is essential hypertension, and this may mimic Conn's syndrome. Thus, high blood pressure and low blood potassium may be due to essential hypertension, which is being treated with diuretic drugs that cause a loss of potassium in the urine.
In addition, plasma renin activity may be suppressed by some drugs that are commonly used to treat hypertension (for example, beta-blockers). The suppression may mislead physicians to an incorrect diagnosis of primary hyperaldosteronism (Conn's syndrome).
There are also a few very rare conditions your doctor might need to exclude.

What can your doctor do?
Your family doctor can refer all patients with high blood pressure and low blood potassium to a specialist in endocrinology, renal disease or clinical pharmacology.
Other patients who should be referred for investigation include those with severe high blood pressure, or those who are poorly controlled on medication or who have a family member with an endocrine tumour.
However, there is a case for all patients with high blood pressure (>140/90mmHg) to have their aldosterone and plasma renin activity measured. The difficulty is that the blood samples must be taken under controlled conditions, usually at 9am after lying down for 30 minutes, and require correct interpretation in the light of diet, drug therapy and other factors. Thus, in practice, aldosterone and plasma renin activity measurements are specialist investigations.

What can you do yourself?
A low salt diet may improve some symptoms by improving the low blood potassium and blood pressure. However, lowering dietary salt intake may also cause an increase in the plasma renin activity (potentially masking the correct diagnosis).
So, for proper evaluation some patients may be asked to take a fixed intake of salt tablets for 72 hours before blood is taken for potassium, aldosterone and plasma renin tests.

What can your doctor do?
While awaiting evaluation at a specialist centre, potassium supplement tablets may be given to improve the low blood potassium. Some patients may have very low blood potassium, warranting urgent in-patient treatment.
Patients with Conn's syndrome will have to have special scans of the adrenal glands. This will allow the important distinction to be made between a single adenoma and hyperplasia of both adrenal glands. Blood may also be taken directly from the adrenal veins (via a catheter passed through a vein in the groin) to determine whether both adrenals are over-secreting aldosterone.
Treatment for an aldosterone-producing adenoma is surgical removal (unilateral adrenalectomy). This may be performed via laparoscopic (keyhole) approaches in some experienced centres.
Patients with bilateral hyperplasia (and also those with an adenoma awaiting surgery) may be treated with the drug spironolactone (eg Aldactone), which acts by blocking the effect of aldosterone. Spironolactone is somewhat similar in chemical structure to the female sex hormone, oestradiol, and therefore has some female hormone-like actions.
Without drug or surgical treatment, high blood pressure in many patients with Conn's syndrome is difficult to control. Poorly controlled high blood pressure is associated with increased rates of stroke, heart disease and kidney failure.

Treatment of Conn's syndrome is usually successful. Many patients with a single adrenal adenoma will be able to stop drug treatment and will have normal blood pressures.
Nevertheless, many specialist centres will follow a patient with Conn's syndrome for life. This is to monitor the rare possibility of growth of a second adenoma.
Patients with bilateral hyperplasia should have life-long monitoring of effectiveness and side effects of drug treatment. Again, quality of life is generally good, although some patients may not be able to tolerate spironolactone treatment.

In mammals, the adrenal glands (also known as suprarenal glands) are the triangular-shaped endocrine glands that sit on top of the kidneys. They are chiefly responsible for releasing hormones in conjunction with stress through the synthesis of corticosteroids and catecholamines, including cortisol and adrenaline (epinephrine), respectively. Though connected to the kidneys, these glands play no role in the functioning of, or health of the kidneys. Glands are part of the endocrine system, and kidneys are part of the urinary system.
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Nathaniel Holsey, Jr.


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