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.
Special note:
I started this blog because of the lack of consistent information so I could help others who are also on this incredibly difficult journey. I plan to continue posting and providing support to fellow Conn's patients. And I will contact as many sites as I can to make sure others don't have to feel like something is wrong with them due to inaccurate descriptions.
Thursday, 19 January 2012
Saturday, 26 November 2011
Hypoglycemia
Aside from Conn's, 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 out of it sometimes after only a few sips of wine (this doesn't happen every time, but am noticing stress and lack of food can make it worse).
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 level you.
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 out of it sometimes after only a few sips of wine (this doesn't happen every time, but am noticing stress and lack of food can make it worse).
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 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 at least five times. Perhaps the altitude, perhaps the dryness, but I've had four sinus infections, bronchitis and a case of pneumonia in early October. 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 two glasses of wine. I now realize no more.
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 lot of healing to do.
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 at least five times. Perhaps the altitude, perhaps the dryness, but I've had four sinus infections, bronchitis and a case of pneumonia in early October. 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 two glasses of wine. I now realize no more.
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 lot of 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
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.
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
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.
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.
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