Monday, 1 June 2020

Outreach Program in Australia tests hypertensive patients for PA

This is the first article I have read where hypertensive patients are getting tested for PA early, as opposed to having other symptoms that are frequently not caught or misdiagnosed, leading to a lifetime of frustration and dire health consequences. This outreach program is going to save lives.

Read full article:

https://hudson.org.au/latest-news/high-blood-pressure-service-increases-referrals/?utm_source=miragenews&utm_medium=miragenews&utm_campaign=news


High blood pressure service increases referrals


1 June, 2020

A clinical service and primary care outreach program focused on hormonal causes of high blood pressure — the first of its kind in Victoria — has led to earlier screening and diagnosis of primary aldosteronism.

Primary aldosteronism (PA), or Conn’s Syndrome, is characterised by excessive secretion of the hormone aldosterone from the adrenal glands. This overproduction leads to the retention of sodium in the body, resulting in high blood pressure which is difficult to control.  PA carries a higher risk of heart arrhythmia, heart attacks and strokes than ordinary hypertension.

The Endocrine Hypertension Service at Hudson Institute and Monash Health has facilitated an increase in referrals from general practitioners for primary aldosteronism screening over three years of operation. This has resulted in the earlier diagnosis and treatment of PA. The results were published in the Internal Medicine Journal, the official journal of internal medicine in the Adult Medicine Division of The Royal Australasian College of Physicians, to ensure the findings were distributed widely to doctors around Australia.

PA is the most common secondary cause of hypertension, affecting 5-10 per cent of hypertensive patients in primary care and up to 30 per cent in tertiary centres, based on international studies.
The Endocrine Hypertension Service is the first of its kind in Victoria and one of few in Australia. Over the three years since launching, patients have become less likely to have pre-existing heart or kidney damage at the time of referral, and more likely to improve their blood pressure with fewer medications.

“Our Endocrine Hypertension Service saw a six-fold increase in patients referred for early testing, two-fold decrease in end-organ damage and consistent blood pressure reduction with targeted treatment,” said Dr Jun Yang, the study’s senior author.

“Our study shows that general practitioners are more likely to screen for primary aldosteronism when there is a streamlined diagnostic pathway, such as our Endocrine Hypertension Service, together with an education program,” Dr Yang said.

“Most patients with high blood pressure rely on their GPs for testing and treatment. Increased screening among GPs will lead to more diagnoses and therefore benefit more Victorians/Australians.”
“Our goal is to accurately diagnose every patient affected by PA,” Dr Yang said.
Dr Yang was recently awarded a NHMRC Investigator Grant Emerging Leadership (Level 1) for her research into primary aldosteronism.


How science helped Jun Yang’s family

Dr Jun Yang wishes she had more time with her grandfather. He died aged just 56 from a stroke caused by high blood pressure, when Jun was one-year-old.

Dr Yang, an endocrinologist and research scientist with the Cardiovascular Endocrinology Group at Hudson Institute, studies an under-diagnosed cause of high blood pressure in Australia known as primary aldosteronism, or Conn’s Syndrome. With Professor Peter Fuller, she established the Endocrine Hypertension Service at Hudson Institute and Monash Health, which has witnessed a six-fold increase over three years in PA diagnoses.

Dr Yang has diagnosed and treated her father, mother and 94-year-old grandmother with the condition, successfully reducing their high blood pressure levels with a targeted treatment.
Dr Yang’s father takes just one quarter of a tablet, a targeted medicine that blocks aldosterone action, per day for blood pressure. He used to take four pills, and still had poor blood pressure. He has stable kidney function and no heart issues. Her mother is also on a quarter of a tablet with excellent results, and her grandmother’s blood pressure has also reduced with treatment.

Dr Yang can hardly believe the results. She only wishes her research findings ‘could go back in time’, to help her grandfather.

What is primary aldosteronism?
·       Primary aldosteronism or PA is excessive production of the hormone aldosterone from the adrenal glands.
·       It causes high blood pressure which is difficult to control.
·       Patients have a higher risk of heart arrythmia, heart attacks and strokes.
·       It is likely under-diagnosed.
·       Overseas data shows somewhere between one in 20 and up to 1 in 10 hypertensive patients have a PA diagnosis.

Collaborators:
Monash Health; School of Clinical Sciences at Monash Health, Monash University
Funders

CASS Foundation Grant; ESA post-doctoral award; Heart Foundation Vanguard Grant; Council for High Blood Pressure Research Australia Grant

Contact us:
Hudson Institute communications
t: + 61 3 8572 2697
e: communications@hudson.org.au

Sunday, 15 September 2019

A change in N.A.D.F. Conn's description


When I was at my sickest, I was desperate for whatever information I could find. I went on every site that had the word Hyperaldosteronism in it. What I found was a lot of confusing sites that had brief symptoms listed, namely that this disease only causes high blood pressure and lowered potassium levels, for example on the National Adrenal Disease Foundation's site (N.A.D.F.). This frustrated me a lot as I had so many other symptoms like migraines, severe fatigue, brain fog, numbness in limbs and concentration difficulties. So why are these so-called professional, medical sites not better researched and written? And what's with the N.A.F.D.? Shouldn't they have the full picture on adrenal diseases?

Yes, I believe they should. And so I did something about it.

Last month, I contacted Dr. Paul Margulies, chief endocrinologist at the N.A.D.F. and asked him to please change the symptom description for Conn's to reflect the reality of the disease. The following is a response I received, January 5th:

Dear Ms. Langrall,

Thank you so much for contacting the National Adrenal Diseases Foundation (NADF); a non-profit organization dedicated to providing information, education and support to persons with adrenal disease.

Your e-mail was presented to Dr. Margulies, and at your urging, he reviewed NADF's 'Hyperaldosteronism: The Facts You Need To Know', and made some changes. The text file of the revised NADF hand-out is attached in PDF format.

If you would like NADF to have detailed informational items for hyperaldosteronism, feel free to author something, and after it's presentation and okay by Dr. Margulies, we feasibly might add it to the information we display on our website and distribute to patients. Thank you!

And thank you so much for your activism on hyperaldosteronism patients' behalfs!

Also attached to this e-mail, please find copy of our latest newsletter (membership application on the back page). If you choose to join NADF, you will automatically receive a copy of NADF News® quarterly.

Thank you again for contacting NADF with your concerns! Best of health and luck to you.

Melanie Wong
Executive Director
National Adrenal Diseases Foundation

Sadly, they did add the other symptoms, but also stated "MOST" patients did not suffer from these. I intend to respond and ask for the word "most" to be replaced with "many". The number of people that contact me on this site have suffered too much not to be listened to.

While the new description is not perfect, it is an improvement. That they actually read my letter and responded to my complaint is encouraging.

One thing to take into consideration when visiting the N.A.D.F. site, is that it was started to help Addison's suffers. There is more information for them than the Cushings and Hyperaldosteronism (Conn's) folks. This is very common. I believe we will see more Conn's cases in the coming years and by then, hopefully, there will be better guidelines and information.


Sunday, 30 June 2019

Some post-surgical questions and observations~

Although I am clinically "cured" of Conn's syndrome, I still have so many questions. I'm sure a lot of you that have taken this unfortunate journey do too. It would be easy for me to just walk away from the support sites, including this blog, but I don't think that's the right thing to do. So I will continue to write updates and post anything relevant to this disease I come across.

A question I have is fatigue... I still have it here and there, and am wondering if it's authentic or depression related. I've had a lot on my plate with caring for an aged parent and the typical work/life issues, and so I wonder if it's a heavy plate or mono-adrenal related. The problem becomes convoluted in that for so long, fatigue was a part of my life, and I wonder if it is here to stay or just a lingering side-effect.

I seem to get more fatigued when it rains or the barometric temperature drops. If I do strenuous activity, I require much down time to recoup. I had anesthesia twice within four months which is also a concern. If anyone else has experienced this complaint after surgery, I'd love to discuss.

A few other post-surgical observations are food/alcohol related. Sugar is a major problem--I can't process it well, same goes with alcohol. If I have a drink or two socially, it feels like three. This makes me wonder what role my mono-adrenal gland plays in this, if at all. Same with coffee, it can effect me badly with nausea and crazy jitters. As a coffee first thing in the morning girl, this kills me the most! I have limited it weekly to four cups down from seven.

As far as eating in general, this is weird, but I find I have to eat every 3 hours or I feel jittery or pass-outy. I really want to know more about all this; I intend to ask my g.p. next week when we have our appt.

To some, these concerns may seem mundane in comparison to the big pay-off that erased the larger, meaner symptoms. And they are, but mustering up energy to go about business as usual can at times be difficult and the food thing is just odd. Before, I could handle all of the above mentioned things better (prior to Conn's), now I am expected to be super-woman, thanks to my surgeon who assured me I would. However, since these are my personal physical symptoms, I know not everyone who has been through surgery will relate. BUT, if you are reading this and can relate, please, please, please... let's talk.

As far as living with one adrenal gland, all I hear from doctors is it's ok, don't worry, your other one will take over. But no where can I find long-term outlooks with living with one adrenal. What will happen when we get old? I just want to be prepared and educated, that's all.

Lastly, I wonder what it's going to take to get this rare little disease more attention. In my heart and my head...there are thousands more Conn's sufferers who are being mis-diagnosed daily (as most of us were initially). A friend who works at a hospital gave me a recent report on Conn's as an epidemic. And as usual, the final word is many doctors are unsure if it is or not. While there is a severe increase of sudden on-set hypertension in younger adults (ding, ding ding!), doctors who are supposed to suspect and check for hyperaldosteronism are not. And since it's such a tricky disease that takes prolonged testing, many (read: most) doctors disregard this and just don't--like mine. So where does that leave all of the Conn's suffers in the world? To the internet to self-diagnose, and if they are lucky like me, they may find a doctor who will listen to them. It's unfathomable to me that it has to be this way.

In the meantime, Dr. Oz may be receiving a letter from this ex-Conn's sufferer. I find it unlikely he will do a segment on Conn's because it's so rare, and he seems to focus on popular illnesses and conditions (like obesity). Again it's the catch 22--we need exposure to get more people checked, but who will take the first step? Well, you have to have hope, and maybe just maybe, if more people start coming forward to openly talk about Conn's, perhaps the major players will finally listen. And do more research.

As always, I appreciate your comments and well-wishes. For all of you out there living with Conn's, please know the positive has vastly outweighed the negative regarding surgery. I feel tons better and no more high blood pressure-which is huge. These little annoyances are small things compared to the endless gratification I feel daily. Please know there is life after this insidious illness.


Sunday, 9 June 2019

Evaluation and Management of Primary Hyperaldosteronism

Interesting write up about Primary hyperaldosteronism being recognized as an increasingly prevalent cause of hypertension by the NCBI for the US National Library of Medicine, National Institutes of Health.

https://www.ncbi.nlm.nih.gov/pubmed/31255203

Wednesday, 3 April 2019

New research on the surgical procedure to treat Conns : Thermal ablation

I just read an interesting article in Medical Xpress.com where researchers are looking into a new alternative way to surgically remove the adenoma that causes Conn's through the use of electromagnetic waves (the technique is called thermal ablation). It's worth the read even though it's in the nascent phase of research.

https://medicalxpress.com/news/2019-04-thermal-ablation-method-adenoma.html

Sunday, 19 November 2017

Researchers discover pump-induced disease mutation in Primary Aldosterone patients

This is a very insightful article that may explain why certain people get hyperaldosteronism-- the result of specific mutations of the Na/K pump found inside the tumors that induce primary aldosteronism (Conn's syndrome).

"Dylan J. Meyer, a TTUHSC Ph.D. candidate, along with his advisor, Pablo Artigas, Ph.D., associate professor at the TTUHSC Department of Cell Physiology and Molecular Biophysics, presented, in collaboration with Craig Gatto, Ph.D., at Illinois State University, a study of the functional effects of specific mutations of the Na/K pump found in tumors that induce primary aldosteronism (Conn's syndrome)." 

Read the full article: https://medicalxpress.com/news/2017-10-pump-induced-disease-underlying-molecular-mechanism.html

Monday, 29 February 2016

National Rare Disease Day, February 29, 2016


I received an email from a man I've never met whose wife Heather suffered from a rare disease: mesothelioma cancer. She is a survivor and started a blog chronicling her disease and recovery, just like I did on this blog. He said he found me through another site which is a small miracle considering hyperaldosteronism is nothing like mesothelioma other than its rareness. We exchanged some emails and he introduced me to the National Rare Disease website, asking me if I would post something to honor its special day, February 29. I wholeheartedly agreed. 

The National Rare Disease is website that explains what a rare disease is and has a database of good information, including a personal stories page. http://www.rarediseaseday.org/article/get-involved. 

The Get Involved page allows you to share your very own story which in turn could help others who may not know what they have or just received a recent diagnosis and are just starting the arduous process of testing.

Heather Von St. James is a survivor of her rare form of cancer, just like many of you who visit this website. We did not have cancer like she did, but we suffered from a life threatening disease that can easily kill if left untreated. The thing about having a rare disease is the too often lack of research and information for patients who want to educate themselves. Knowledge is power and as a patient, advocacy is crucial. Getting a scary diagnosis is one thing, having a rare disease where there is conflicting and doomsday information on the internet is another. The many and complicated steps Heather had to take are not unlike the steps Conn's patients take to ensure diagnosis and determine if surgery or other forms of therapy is an option. 

To read about Heather's journey, visit: http://www.mesothelioma.com/heather/survivor/#intro

I plan to post the link to the National Rare Disease website to my Facebook page as well. We are fortunate to have new avenues like this to spread helpful information. Hopefully, this site will encourage people to share and meet new friends who can help or be supportive. The more we connect, they more we help the next guy, even if they have other diseases, it still creates a dialogue which gets passed on socially more than we realize.

For my Conn's readers, please continue to contact me for questions on testing, surgery and life after one adrenal. I've met some amazing people who have overcome a lot of struggle and survived the hormone wars. In the meantime, please visit the National Rare Disease website and remember change is happening, The more sites like this that are started, the more our own rare disease has a chance of becoming more visible and mainstream (which I thoroughly believe it already is) and get the attention is deserves.

Thank you Cameron Von St. James for reaching out and tell Heather she is a warrior we could all look up to.