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

While the N.A.D.F. did add the other symptoms, they 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 unexpected journey do too. It would be easy for me to walk away from the support sites and blogs in an effort to close that difficult chapter, but I don't think that would be the right thing to do. So, I will continue to write updates and post anything relevant to this disease I come across in hopes of helping others who deal with Conn's.

One 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 simply stress related or due to having only one adrenal gland. 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. Weird. 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 hear about it.

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 one is the toughest, so 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 like I may pass out. These seem like good questions for my G.P. next week as I no longer have an endocrinologist.

To some, these concerns may seem mundane in comparison to the big pay-off that erased the larger, more life threatening symptoms. Before I was diagnosed, I could handle all of the above mentioned things far better, now I am expected to be super-woman according to my surgeon. But I'm not even close. I realize 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 age? I would really like to be educated now and know what could be around the corner.

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 misdiagnosed 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.

Wednesday, 12 November 2014

Thanks for supporting this blog!

Abiquiu, NM

It's hard to believe its been almost seven years since I was diagnosed with Conn's. Despite surviving the disease and having surgery in 2009, I am still committed to informing and updating readers about the stages of testing required for a proper diagnosis and treatment/recovery plan on this blog. I also find it crucial to share with readers updates on my post-adrenalectomy life and encourage others to share their stories as well.

For me, the surgery was a success, but if you read this blog regularly, my life has changed  a lot since surgery-- my hypoglycemia became severe, making things a little more complicated. Stress is still my #1 enemy, but I continue to learn new ways to take care of my delicate system with supplements, acupuncture and a new way of eating-- and living. It's been frustrating and scary, but everything seems to make sense after finding this out. My doctors have been monitoring my pre-diabetic issues for a very long time, even before I had Conn's, and after some really scary episodes complete with erratic behavior and several instances of passing out, finding out why has helped me understand why things have been so off for so long. Even after surgery. But more on that in another blog.

Thank you for writing in and posting your comments. People from all over the world have contacted me to ask questions and share their experiences which is so helpful. Some folks have had easier experiences with Conn's, but many have dealt with the darker side of this disease that includes a multitude of side effects many websites continue to unfortunately omit. It helps others who just found out they have Conn's to see what they can expect, so keep the dialogue going! This blog's purpose is to inform and support and whatever we can do to help the next guy, we should do.

Maybe we are getting closer to getting the attention Conn's patients desperately deserve. I was recently interviewed by a health writer in NYC who wanted to pitch my story to the Dr. Oz Magazine, which is something I think would help A LOT of people out there. Here's hoping they take it. I will keep you posted. Who knows, maybe they will put a group of us on the show where we could share our stories, thereby helping others who live in fear, worried about their own misunderstood symptoms.

Wouldn't that be great?

Monday, 27 October 2014

Interesting article about Hyperaldosteronism in obesity related hypertension

BOSTON — At the Cardiometabolic Health Congress, Colleen M. Majewski, MD, discussed the link between elevated aldosterone and obesity-related hypertension, and how knowledge of this association factors into the management of patients.

Please click on link to read entire article.

http://www.healio.com/cardiology/chd-prevention/news/online/%7B8f2d643e-bf7c-4fd2-a9fc-27ce66076206%7D/expert-examines-contribution-of-aldosterone-in-obesity-related-hypertension?sc_trk=internalsearch

Thursday, 16 October 2014

N.A.D.F. needs stories about adrenal crisis for Lobbying effort for better EMT training

As a member of the National Adrenal Disease Foundation (NADF), I receive emails each week regarding updates and issues for people suffering from adrenal diseases (Cushings, Conn's, Addison's).

Today, I received a request for stories about adrenal insufficiency or crisis that precipitates patients to go to the hospital or emergency room. The goal of the study is to collect stories to share to legislature to create a better protocol for E.M.T. Many E.M.T. workers are not trained or familiar with the signs of adrenal crisis. This is a good thing they are doing and if any of you have a good story to share, Karen at NADF, is the person you can contact. Her email is: karenf@caresfoundation.org

Many people have contacted me on this site to share their health scares, especially in the early stages of Conn's when potassium levels became too dangerously low, or high blood pressure caused heart attacks or other problems. As well, anyone who has gone to the hospital with severe fatigue, numbness of limbs, brain fog, confusion or polyuria issues that has already been diagnosed with the Conn's Disease, should contact them.


Saturday, 24 May 2014

We need more research and media attention for Conn's



Dr. Jerome Conn

If you have been following this blog, you know I have struggled just like you with the debilitating disease called Hyperaldosteronism, also known as Primary Aldosteronism and more commonly referred to as Conn's Syndrome. For seven years, I have chronicled my journey from the steps it took to get a diagnosis, to finding a good endocrinologist who understood the disease (no easy feat), to my ultimate choice of having surgery.

I receive questions from people all over the world, from the recently diagnosed to those who are waist deep in the murky waters of Conn's. And then there are the survivors who opted for surgery like me whose ultimate question remains steadfast: Are we going to be able to live a normal life with one adrenal gland?

Well, yes, I believe so, but it will be tricky at times.While a few people have written to say that they have their lives back with little repercussion, there are many more who continue to have issues--big ones-- that they directly attribute to losing an adrenal gland. I include myself in that group.

Many of us are experiencing similar issues: hypoglycemia; affects from severe stress that can result in adrenal hypofunction (symptoms similar to Addison's disease); hormone imbalances in women; and hyperinsulinism- the result of overtaxing the remaining adrenal.

Sadly, there is little to no post-surgical data on our disease to be found on the internet. We are left on our own, seeking out the help of each other, wondering why our endocrinologists don't have the answers to our questions and seem to break up with us after surgery. If only Dr. Jerome Conn was still alive.

While surgery can be a life saver, managing stress is crucial to the body and mind. Living with only one adrenal gland can seem like a see-saw ride, sometimes you're up and feeling free of ailments, the next you're on the ground wondering why you are having more health issues after the faulty glad has been removed.

Other glandular diseases like Addison's and Cushing's seem get most of the attention. From what I have learned from having this disease, Conn's patients need some more attention too. But even today, many sites like the National Adrenal Diseases Foundation (NADF), still don't merit the symptoms so many patients experience. I for one know they exist as I had them and countless people who read this blog have too. I contacted the NADF three years ago to get them to add the numerous other symptoms and was fortunate to get a response from Dr. Paul Margulies: http://hyperaldosteronism.blogspot.com/2012/01/change-in-nadf-conns-description.html. Yes, they added the other symptoms, but they still wrote:

"While most individuals have no specific symptoms, some may have fatigue, headaches, muscle weakness and numbness. The physical examination is usually normal except for the elevated blood pressure"

The three underlined words are disturbing to me as I have received many emails from patients suffering with debilitating symptoms that have affected their lives traumatically. 

The Clinical Journal of the American Society of Nephrology state that 10% -15% of newly diagnosed hypertensive patients are due to primary aldosteronism. Considering the amount of Americans that have high blood pressure, this number translates into an alarmingly high percentage. If that alone isn't enough to get more research and attention, think about this: of those 10-15% of people, how many are getting the treatment they need for Conn's or are their doctor's simply passing out meds without looking further into other symptoms? I realize the potassium levels are usually the indicator and some patients with this disease have somewhat normal range levels. But if they are complaining about migraines, polyuria, tingling limbs, fatigue and brain fog, shouldn't doctors pay attention to these and delve a little deeper? I think so.

So what can be done for our misunderstood Conn's group?  For starters, it would be great if our designer disease got some major media play, like on The Doctor's or Dr. Oz  I've contacted the Dr. Oz show twice but received no response. Maybe if someone really famous got this disease it would help, which is a terrible thought, but has some truth.

At this point, I suggest we continue to help and support each other here and on other sites. But, if you are on a medical site and read that there are no known side effects of Conn's, I highly suggest you contact that site and tell them your story. The more people know about the reality of this disease, the more informed we can become to help the next guy who gets diagnosed with this strange adrenal condition with an awfully long name.









Sunday, 16 March 2014

Living better with supplements


It's hard to believe it's been almost five years since my adrenalectomy! I am continuing to learn how to take better care of myself, which seems easier in theory than in practice. Despite what all the doctors said, there are changes that have had to be dealt with. The number enemy still remains to be S-T-R-E-S-S.

On the upside, I continue to live without the daunting effects of Conn's, like high blood pressure, bloatedness, fatigue, polyuria, brain fog (this was the worst), and paresthesia. With the aldosterone producing tumor gone, all of these side effects should be gone for all who choose surgery vs. living with the tumor and taking meds. 

That said, as I've mentioned in other posts since the surgery, I have had a tough time with hypoglycemia and have to monitor my sugar levels constantly. While I was diagnosed with this years before the adrenal tumor, I notice its presence more now. I continue to be careful with making sure I have trail mix or nuts with me at all times, water too. I notice I am more prone to episodes when working out. Stressful days followed by a workout at the gym can make it worse. Symptoms include feeling faint, sweating, confusion, and shakiness. This can be a dangerous condition, so if you think you have it, consult your doctor.

Stress in any form seems to affect me more now than ever. Perhaps that is due to just one adrenal doing the work for two. I don't know. Memory issues have reared their head again, but this is not from Conn's, it was tragically caused by acute exposure to carbon monoxide my boyfriend and I suffered from in 2012-13. That story remains for another posting, another day.

But the good news is I have adopted a daily supplement plan that has made a big difference in my life. I am going to list these for you or anyone that may benefit. Please note, this is a personal regime, I am not a doctor and I do not advise anybody to take these without doing research or consulting a doctor. 

For Stress:
B6
Omega 3's
Tumeric (also good for pain)
Theanine (anxiety)
Taurine (anxiety)
Vit. C (boosts adrenal hormones)
Ginger tea for stomach upset and reducing inflamation
Licorice tea for acid reflux, digestive issues and respiratory infections

For the Liver:
Milk Thistle
Alpha lipoic acid
N-acetyl-Cysteine
Vitamin E and D

For Adrenal Support:
Magnesium (this also helps with anxiety)
Zinc
Ashwaghanda

For Hypoglycemia:
L-Carnitine
Chromium Picolinate

Always follow the recommended doses. 

**Remember, these are merely the things that I use to help my remaining adrenal gland and cope with stress. Always consult your doctor or Naturopath before beginning a supplement program. 

Hopefully this information is useful to you. I always like learning what helps for others, so let me know if you have suggestions that have made your mono-adrenal journey better.


Monday, 24 June 2013

June 2013-More post-Conn's Updates



It's been way too long since I last updated this important site. Please don't take my absence as a sign I have moved on after surgery and forgotten about all of you. I've merely been focusing on making a living, literally trying to survive in the high desert where the economy has seemingly vanished (which is Santa Fe, NM). I can honestly say it's often been a challenge living with one adrenal while dealing with the frustrations of work, lousy bosses and landlords. Thank goodness for spring.

I've recently discovered a site called Life Extension  that my scientist friend suggested. Under the adrenal section, I found some good supplements for taxed glands (gland). I now L-Carnitine  and ALA (alpha lipoic acid) which helps build up insulin resistance and is also good for the brain. I'm about to add DHEA which is also good for the adrenals. I have noticed positive effects since starting them a month ago; I have more stamina and am less confused-which is an after-effect not from Conn' s but from CO poisoning in my old rental unit (more on that below). I continue to take vitamins C, E, B (pretty self explanatory). But some new additions include Taurine-an anti-oxident that also helps protect against cardio vascular disease; Lysine-an amino acid for lowering my glucose; L-Theanine-to help curb anxiety and prevent Alzheimer's; Magnesium malate-for fatigue. I am also a big tea drinker and add a mixture of uva ursi and passion flower which helps with UTI's and calms me down.

Re: the CO poisoning-- last October '12- January '13, the wall heater in my house was found to have had a leak in it- determined by NM Gas company in early January. It had been ongoing for months, and I nearly lost my dog, cat, my boyfriend and my own life. The animals slept by the unit and were lethargic and had seemed sick since October. I had severe headaches, confusion and balance issues, followed by depression and exhaustion. My boyfriend had it acutely and was extremely ill. Convinced it was the flu, we found out it was deadly CO gas, 1000 ppm- a very high, lethal amount. We are grateful to all have made it through, though Eddie and I still struggle with lingering issues.If anyone reading this has had a similar situation, please email me (clangrall@gmail.com) .

We have all moved from the property and have begun the healing process, which will take along time according to doctors. After dealing with Conn's, this the second most awful health scare I've ever experienced.

As I navigate through this new health crisis, I am reminded of the lessons I learned when I had hyperaldosteronism.   Be patient, do research, talk to others who have dealt with your condition, be gentle with yourself, have HOPE, and know this too shall pass with the right treatment.

Perhaps it all is a lesson on how I need to take better care of myself. One thing I learned through this hell is that my remaining right adrenal gland sure is a strong one!

Well, that's about it for now. Remember: Stay strong, be your own patient advocate, know there hope for Conn's, don't give up--focus on becoming an ex-Conn like me and take the time to appreciate all that you have.


Wednesday, 5 September 2012

Three and a half year follow up



My apologies for taking so long to write. After moving out west 2 years ago, my time has been divided between writing, two part time jobs, my very first dog and a new relationship.

So much has happened since my surgery 3.5 years ago. Starting this blog has been one of the best things I've ever done. I knew when I got Conn's I would end up helping others, I suppose I am a "connector," as my network savvy friends call it. Had I not used my love of writing as an outlet, I can honestly say, I would not be where I am now. Taking control of your illness is not only empowering, it's vital to your own personal healing journey.

To the many wonderfully strong, brave people who have contacted me on this site through comments and emails, thank you. I'm glad I have helped provide information, at the very least, support for your journey. My apologies for not answering all the comments, perhaps one snowy day I will have time to do this. For those who have contacted me directly by email or phone, I thank you for being strong to advocate for your wellness. If anything I have learned about this disease, you must be as pro-active as possible, or you may get lost in the heavy endocrine verbage and the seemingly endless road of weekly tests.

I have tried to keep this blog professional and without too much personal emotion. I did this for two reasons, first because I don't like to divulge too many intimate details of my life and second, because if I did, I fear those emotions would take over and cloud the purpose of my blog's objective, which is to help others.

So what's been going on health-wise since the miracle surgery? I am technically healed of hyperaldosteronism, but now have severe hypoglycemia. It's to the point that all my friends know to have protein, water or electrolytes on hand when I'm around. I crash easily and am still learning about diet. I have cut out glutens, avoid highly sugary food (although adore cake and ice cream, so you know this is tough), ration the morning coffee to every other day, and have 1-2 glasses of wine at the most if I go out. If I break this pattern, I suffer and have only myself to blame.

I often experience nausea which I never had before, and get a little depressed/agitated if my regular exercise routine is disrupted. Physical exercise is vital to me now and I seem to have a higher tolerance physically than dealing with emotional stuff. I didn't sweat for 2 years and now can't seem to stop!

On the emotional front, I get tired easily when dealing with tough stuff, like high drama neighbors, bosses and family. Fatigue is still the enemy that I often battle. Stress, including emotional trauma, really levels me, far more than ever before. I chose flight over fight, even when I know the other person is being unrealistic or a manipulative jerk.

If any other post-surgical people encounter these issues, I would love to know. I have my suspicions that one adrenal can only do so much... an imbalance to the 'fight or flight' command center has to have its consequences.

As far as the "girl stuff", I'll spare male readers the discomfort of having to read about not-so-fun details and suggest that my Conn's sister's contact me directly at my personal email if they have questions: clangrall@gmail.com. My smarty pants doctor in Santa Fe has a philosophy on this... she believes there is a direct connection between the reproductive system and the adrenals, and I am starting to agree with her when I think back to my former reproductive hell days of miscarriages and Menorrhagia.

Regardless of these little disruptions, I continue to live my life to the fullest, staying in the present, trying not to get caught up in the past, or look too far into the future. I feel lucky and know this disease happened to me for a reason.

Conn's patients who are given the gift of surgery (yes, it really is a gift) to remove the adenoma/tumor will no doubt see an improvement in their lives. But what's around the corner remains to be seen. As long as we keep the lines of communication open, we can support each other while learning new ways to cope with our post-surgical lives.

Whatever I learn or experience, I will post. Here's to taking control of your pain and life... Don't stop empowering yourselves.

~Carole



Saturday, 26 November 2011

Hypoglycemia

Hypoglycemia is a condition I was diagnosed with back in Baltimore several years ago when I was dealing with Conn's. The doctor who told me I had it didn't fill me in on all of the symptoms, he just kind of lumped them all in with Conn's and told me to always eat regularly if I felt weak or like I was going to pass out. He never went over all the other triggers, which could have saved me from some dangerous situations.

Once again, this is where you have to do your own research. I wish I had, but was so consumed with the problems I was suffering with Conn's, that I couldn't tell what symptom was causing what. Most doctors I saw thought Conn's was the culprit that was robbing me of stamina and doing strange things to my head. Things got so tricky with feeling horrible that I never looked into the fact that hypoglycemia could have compounded the symptoms of Conn's. Conned again, it seems.

The definition of Hypoglycemia is insulin shock or Low blood sugar. Insulin is a hormone that reduces blood sugar. It is produced by the pancreas in response to increased glucose levels in the blood.

Blood sugar below 70 mg/dL is considered low. Blood sugar at or below this level can harm you. And I am lucky to be alive after having some really scary episodes of this.

The most common causes of low blood sugar in people without diabetes are:

Insulinoma - a tumor in the pancreas, produces too much insulin
Skipping meals
Waiting to eat your meals, or eating at off times
Exercising more or at a different time than usual
Drinking alcohol

Symptoms you may have when your blood sugar gets too low include:

Double vision or blurry vision
Fast or pounding heartbeat
Feeling cranky or acting aggressive
Feeling nervous
Headache
Hunger
Shaking or trembling
Sleeping trouble
Sweating
Tingling or numbness of the skin
Tiredness or weakness
Unclear thinking
http://www.blogger.com/img/blank.gif
Sometimes your blood sugar may be too low, even if you do not have symptoms. If your blood sugar gets too low, you may:
Faint
Have a seizure
Go into a coma

After finding a great doctor (Dr. Erica Elliott-she is fantastic) in Santa Fe, who has educated me, I am learning so much. But I had to go through some hellish situations before I found her. For years, I have had weird problems like: feeling like I'm going to pass out while driving, almost falling asleep sometimes when I've had plenty of sleep the night before, crashing big time after eating sugary foods, and feeling wasted after only a few sips of wine (a real killer at high altitude-- like where I moved to in Santa Fe). Rule of thumb-always eat while drinking. Always.

My mother's genetic counselor believes my maternal side has a genetic mutation of the endocrine system as we all have auto-immune diseases http://www.blogger.com/img/blank.gifincluding: diabetes, thyroid cancer, hyperaldosteronism (Conn's), Alopecia, Graves disease and Shingles. It's definitely curious.

Regarding my own endocrine disorders... hypoglycemia mixed with Conn's had me teetering in dangerous territory. After being educated by Dr. Elliott...everything has changed, including: my diet, I'm starting to learn so much more about my body, and fight or flight responses mechanism.

If you suffer from hypoglycemia as well as Conn's, I would be interested to hear from you. I know since my surgery, this condition has appeared more frequently, am unsure of the correlation with having only one adrenal gland. If only there was more research and data to help guide us through these often stormy hormonal seas. Living with one adrenal sometimes is effortless, but other times the stress can really level you.

Wednesday, 16 November 2011

Almost 3 years after surgery....

...and yes, the hypertension is gone, the potassium is pretty good most times and I am physically stronger. However, this past year has been quite challenging health-wise.

After moving to the southwest from the east coast to "heal" more from surgery, instead of continuing the healing process, I've ended up becoming sick several times. Perhaps the altitude, perhaps the dryness, but I've had four sinus infections, bronchitis and a case of pneumonia in early October after moving into my new house downtown. And now I find my sodium levels are off, electrolytes mixed with estrogen imbalance + Hypoglycemia = daunting and scary at times.

When I moved from my first house rental in August 2011, it was discovered that there was black mold in the bathroom, which can be deadly for a person with an auto-immune condition. It was there the entire six months I lived there, which is probably why I had chronic sinus infections. I had no idea black mold could survive in a desert. But it is pretty prevalent here.

The good news is I FINALLY found the right doctor, an environmental family practitioner who specializes in auto-immune, adrenal and rare diseases, like Conn's Syndrome. Her name is Dr. Erica Elliott, and she practices in Santa Fe, NM. I went to see her for the first time in September, and she understood exactly what I've been through with Conn's and hypoglycemia and hormone imbalance. She also has a lot of experience with the effects of toxins in the home and is helping me get through my symptoms. Thankfully, she is aware that living with one adrenal gland is a difficult journey at times.

As far as the electrolyte/hormone/hypoglycemia issues, Dr. Elliott is treating me with supplements and has put me on a strict diet...no yeast, gluten or sugar. She's informed me alcohol can be deadly to me. I only drink wine, and after a glass, maybe two at the most, I've noticed sometimes I crash and am majorly out of sorts, especially if I'm dehydrated or don't eat. I had no idea how bad hypoglycemia can affect me and had a horrible experience at the end of October with just one glass of wine.

So, my life is changing still, even after all this time. I am learning what works, what doesn't. Those who have had the surgery to remove the tumor and are thriving make me happy for them. But so many have contacted me and told me they too are struggling with other problems. Your surgeon will say you are cured, but they don't know what's in store after the adrenal is gone. Little information available here. It's seems we are learning as we go along. I thank God I found a smart doctor who researches.

Dealing with one adrenal is unknown territory, but achieving balance in my body, mind and soul is my mission. I think Dr. Elliott will get me there, but know I still have a bit more healing to do.

Sunday, 20 February 2011

Conn's story in Harmony Magazine, January 2011 issue

A new lifestyle magazine called, Harmony, is on the news stands in high end health food stores such as Whole Foods and Sunflower Market, as well as Wal Mart. Harmony, geared towards working women, gives tips on finding the balance in our lives to focus on body, beauty, fitness, family, and food. There is also a section on health, and I was interviewed to discuss my journey with Conn's disease.

Unfortunately, the magazine is not on-line, so you have to purchase it to read the article. On page 94, under the title "Medical Mystery Illness," I discuss my adventures with this rare and frustrating disease. It was great to be able to speak honestly about a hormonal illness so few doctors understand. Hopefully it will help anyone out there questioning their symptoms.

Buy it and spread the word!

http://www.foliomag.com/2011/source-interlink-expands-womens-market-new-magazine

Wednesday, 9 February 2011

Two years after Surgery

It's almost two years since the adrenalectomy. I've received numerous inquiries about how I feel and handle stress, so I am dedicating this post to those questions.

I'll start by saying I have nothing but gratitude for having the opportunity for surgery. I am off ALL meds (I took 7), and my life has improved substantially. If anyone reading this is on the fence about surgery, I say do it. I may have one adrenal gland, but I am more active now than I was while I had Conn's. I feel like I have a second chance. And I intend to live my life cleaner, healthier and smarter, and so far, so I have been. Yet... there are limitations, and I believe I will have these for life. So I take the good with the bad as long as the bad doesn't involve a hormone called aldosterone.

Now about the stress... as many of you know there is little information about Conn's out there, but there is even less information on life after Conn's and surgery. I have asked doctors and visited all sorts of sites to see what a mono-adrenal life will be like, and guess what? No one knows for sure. Doctor's say there is no problem, but without medical documentation, they really don't know. We are indeed a special bunch.

Here's what I can tell you from my personal experience, emotional stress is harder for me to tolerate than physical. It may be the reverse for others, but I have found when dealing with irate people or those looking to pick a fight, I tend to walk away (flight is better than fight). The past few years were filled with stress, especially with my family. Last fall was a very difficult time for me, I was trying to fix up and sell a house in order to relocate to another state, all the while taking care of an aging parent who was ill. I had a sibling who insisted on making everyone's life miserable through abusive bossiness. After endless interactions left me completely fatigued, I realized I had to subtract myself from the equation in order to take care of my emotional and physical health. So I stopped dealing with her and focused on the care of my parent and my life. It saved me from further anxiety and losing more days catching up to a normal level of energy. Avoiding certain conflicts to survive is the best way after going through six years of stress in getting a diagnosis.

So, do we have to perpetually fly away from all of life's turbulent winds just to survive? I don't know. But I can say getting out of emotionally stressful situations is what I need to do NOW. As much as I want to handle stress and tell bullies off, I know my body can't take it. I also know this is a very isolating disease, most people simply can't understand the effects it has had on us. I am lucky to have a very special man in my life that has been there through thick and thin, when my family wasn't. Confiding in a someone you know you can trust is crucial to healing. I highly suggest this for anyone with Conn's. You NEED to have a supportive soul present.

Now the physical... I work out almost daily and feel stronger each week. The down side of this is: I relocated three months ago to a location 7000 feet above sea-level, so altitude adjustment has played quite a role. I started to feel like the old Conn's days and got very depressed. Sometimes, even just walking has been exhausting. But the longer I'm here, the better that gets! If I feel shaky on the treadmill, I simply get off and go home. But for the past month, I have had incredible energy and am feeling more and more like my old self. I still need to lose weight, but I attribute this more to the incredible food in New Mexico than Conn's!

Hopefully some of this helped those of you about to go through surgery or are on the mend. I hope and pray through time, I will be more equipped at dealing with emotional stress. It can be hard on the ego leaving in the middle of something that goes against your moral grain. But maybe that too is a part of the journey. Having this disease changed my life in ways I have a hard time expressing. I can only hope my words here help and something is learned by us all.

Sunday, 24 October 2010

WBAL TV-11 Baltimore television interview: Conn's Disease

Last week, WBAL TV-11 in Baltimore, MD, did a segment for their Woman's Doctor Program featuring my experience with Conn's Disease. I hope more Conn's survivors will come forward to tell their stories in the future--I believe there are a lot more of us out there than is believed.

http://www.wbaltv.com/womansdoctor/25429737/detail.html

https://mail.google.com/mail/?ui=2&ik=55d4692dc0&view=att&th=12be9011f1d029c0&attid=0.1&disp=attd&zw

Tuesday, 14 September 2010

Mystery Illness from the New York Times Magazine, 9.12.10

There was an article in the NYT Magazine last Sunday that caught my attention. Entitled "The Heat of the Night", it dealt with the journey of a man who suffered from a strange nocturnal fever and unexplained weight loss. Doctors visit provided little help as the patient became more confused and concerned. Sound familiar?

Finally, a tumor showed up on a CT scan. Unfortunately, his symptoms were incongruent with type of tumor that was diagnosed. To learn more about his "mystery illness" and ultimate prognosis, go to:

http://www.nytimes.com/2010/09/12/magazine/12FOB-diagnosis-t.html?ref=magazine

While his condition is unrelated to Conn's, I found similarities in his frustration with getting a proper diagnosis. It only goes to show we are not alone. And that reaching out on the internet through blogs can save lives.