Sunday, May 29, 2011

Political/Economic Barriers in Multiple Sclerosis Research

Thankfully, MS is not an epidemic.

Thankfully it is widely recognized as a serious CNS disease.

Thankfully treatments are widely available.

Thankfully doctors recognize MS as a force to be reckoned with and are willing to do battle whenever, however.

Thankfully politicians are somewhat familiar with the havoc MS can wreak on a patient's life and they seem interested in funding research and clinical studies that are helpful to patients.

So, are there any political or economic barriers in MS management?  What are your community members saying?

Do they find easy access to medications?  Are they easily able to get disability when it is needed?  What about assistance devices?

Perhaps you disagree with the above statements.  If so, do you think policymakers have been good stewards of monies needed for allocation to diseases like MS, or do you think they have shown foolishness in their recommendations? 

There are some that would argue that, while the burden on an individual MS patient is high, the burden on the community and society at large is not.  They are concerned about other diseases with a disproportionate amount of funding when the burden of the disease as a whole on society is concerned.  They think funding should be pulled from other diseases and disorders to go toward theirs.

Right now funding is not decided with consideration to the overall burden of the disease or disorder on society.  I think this is strange.  What do you think?

In one way I think it is good.  Without this way of dividing up funding, orphan and rare diseases would remain on the back burner, and patients who desperately need help would be rendered virtually helpless.

On the other hand, I think it is irresponsible not to take into consideration the immense burden of some diseases that are seriously underfunded.  Millions of people suffer and are essentially ignored.  When asked why legislators and policymakers don't take the burden on society into consideration when making these decisions, there are not any good answers.

Some diseases simply are taken with more seriousness than others.

Some think this has more to do with whether the disease is considered an "invisible illness".  Others think this has more to do with the lobbyists and those who have an agenda.

What do you think?

Monday, May 23, 2011

My Trip to Capitol Hill - Diary: The Preparation

I am headed to Capitol Hill.

I will be participating in Headache on the Hill (HOH) which is an initiative of the Alliance for Headache Disorders Advocacy.  The dates for this are May 31 and June 1, 2011.  HOH is being held in conjunction with the 53rd Annual Scientific Meeting of the American Headache Society and what was National Headache Awareness Month that has been since designated instead as National Migraine Awareness Month - June.

What a privilege to be asked, but what a responsibility.

I decided to keep a journal, so others in the future who are interested in participating in HOH or similar activities might get a feel for what the experience is like.  Hopefully familiarity with my experience will lead to more and more Health Activists and patients taking similar action and participating in such activities that will benefit patients as a whole.  I don't know about others, but I always feel a little more secure when I have a clue what to expect.

After being asked, I have been awaiting contact from the AHDA and the NHF for further instructions, some of which I received yesterday. 

The AHDA is presenting a webinar on Tuesday that will help to prepare those of us who are rookies for the experience ahead.  Participation is optional, but it is an Issues Briefing and Advocacy Training Session for participants, so I really hope to be able to do it.  Goodness knows I need all the prep time I can get!

Hopefully I will get information about flights and other reservations by tomorrow, otherwise I'll give them a reminder call and see if we can make some headway there.  The date is very quickly approaching, and most flights I've been able to find have only one or two seats left, so I'm anxious to get that out of the way.  

I am hoping to be able to fly in a day early as flying often triggers a nice Migraine attack, but we'll see how that goes.  Flying out for home seems to be my trouble spot, as right now I see no way to make it home the same day I need to.  There are only so many connecting flights without me having to drive half the night to get back home.  Aaah, the disadvantages of living in the middle of nowhere.

I'll update when I have more information.  Stay tuned! 

Sunday, May 22, 2011

IRL - Government and Health Activism

I make it a point not to write about political views.  That's just my policy.  That said, I truly think there is a place for other Health Activists like me who on one hand do not want to share or converse with their political ideaology, yet on the other hand realize that it is the responsibility of us as Americans to participate in governmant.  Because I believe this has much more to do with government than politics, I'm hoping this will generate thoughts and conversation with other Health Activists.  Let's see what you think...

It's been about a year and a half ago that Health Activist Teri Robert revealed in the comments section, the abysmal number of Migraine patients and advocates that are willing to do even the smallest things to fight for their disease - 1000 out of 25,000 contacted.  The article itself was about pain patients and the number (1000 out of 8000) that chose to take action.  The majority complain, even whine, yet do nothing for the greater good.  Teri discussed her call to action which requires that a patient or loved one simply click a link to make their voices heard.  She says it takes about 5 minutes, but I found that it took me less than three... and I even took the time to personalize my message to my legislators.  One need not know any information about their government to do this.  They plug in their zip code and all the hard work is done for them.  They don't even have to actually write a message as one is provided for them! 

Why then is it so hard to get patients to do this??!

As Health Activists, we are good with things that happen online.  Why then are we so ineffective in getting other patients to put 5 minutes toward healing themselves?   What can we do to fix this?

I was appalled at Teri's facts.

Are you active in helping your legislators see the impact of your disease/disorder?  How?  Do you actively encourage your community members to take action?  How?

I am moderately active where contacting my legislators are concerned.  I've told them about needed legislation for pain treatment.  I've fought for the repeal of the law that will eliminate the sales of incandescent light bulbs next year.  There are others as well.  I often receive replies, but not always.  Those replies tell me that - to a degree at least - I am being heard.  As a result of those activities I have received multiple invitations to events in which my legislators are speaking or doing Town Hall Meetings.  As yet I have not been able to attend one of those, mostly due to flares of my health that are really poorly timed.

Not long ago I was invited to participate in my government and for my illness by going to Capitol Hill in person and talking face to face with my legislators.  At first I was taken aback - I do not consider myself at all well-spoken.  My brain fog often gives me trouble with word finding, and I am prone to being un-apologetically blunt at inopportune times.  Still, it took only a few seconds of convincing before I found myself saying an enthusiastic "YES!"  Heck, I love being spontaneous, and I am passionate about being a Health Activist.  This is yet another opportunity to do what I have been preaching about for years - putting my money where my mouth is.

And so despite shaking knees and fluttering heart, I am getting ready to head off to Washington DC in about a week to try to put a face on the disability and need for proportionate funding for my disease.  I don't know what the next days will bring, but I really, truly want to be up to this challenge.  I want to blog and tweet about it as I go, hoping that other Health Activists might be able to use my feelings and experiences - good or bad - to give them the courage to do the same for their disease or disorder.

Do you have other suggestions for me?  What do you think YOU would find helpful to encourage you to become more active in your government to benefit your health condition?

IRL - Do You Meet and Greet?

IRL means In Real Life.  I'm writing a duo of blog posts on this topic because I think it really applies to Health Activists.  This post deals with meeting our community members in person...

Yes, we are Health Activists because we interact with other patients online.  But some of us take our Health Activism to a different level... we meet some of our community members in the flesh.

Have you ever met one of your community members in person?  How did you set it up?  What was your experience like?  Would you do it again?  What kind of advice would you offer others who want to meet their members IRL?

Meeting someone you have only had interaction with online can be a spooky thing, especially the first time.

The first person I met IRL was my friend Michelle.  She is a Graves' Disease Health Activist and one of the first online patient advocates I ever interacted with online or otherwise.  She and I have remained close over several years now, and I treasure her friendship as something beyond our activism... this is very personal.

Michelle lives in Georgia.  My hubs and I were traveling to Florida for a conference, and we made sure that one of our layovers - a long one - happened in the Atlanta airport.  Michelle and her son got a ride and we met for lunch in the airport at a sandwich shop.  We only had 2 hours, but we packed a lot of interaction into that time, and that only cemented our friendship further.  To this day, we remain close and write each other frequently both about our Graves' Disease and about our lives in general.

A couple weeks ago, I had another opportunity to meet online friends IRL.  I was able to connect IRL with some of the superstars of the Migraine world when I was asked to participate in a conference in Philadelphia, PA.  Because of my experience with Michelle, I had the courage to tell them "Yes!" and I'm so glad I did.  We spent two days together, and friendships that we have had online for some time stepped up to an entirely new level as a result of that personal interaction.  I'll share a photo of our little group below.  It's a picture I never imagined would happen.  Look at us all, online friends who all came together because of our activities with patients and our passion and dedication to helping others with a debilitating disease.  I don't mind telling you, I'm pretty proud of that photo and what it means.  Pictured below from left to right are:

Teri Robert (Health Central, and HelpForHeadaches), Anne Ledet (Migraine Puppet), Megan Oltman (FreeMyBrain), me (WEGO Health,, Janet Geddis (The Migraine Girl,, and Diana Lee (Somebody Heal Me,

(...and yes, the ever-present D&G sunglasses came off for the photo, but you can see them still in my hand!)

Next I'll be posting about taking online Health Activism to a whole new level - becoming politically active for your cause...


Comment by JennyPettit on May 23, 2011 at 8:35pm
I could write a looong reply...but for now I'll say yes, I do a good bit of IRL activism, and have met a few other activists in the process (most notably Julia of Reasonably-Well).  As you may know, I'm doing a webinar on IRL activism on Thursday, which is why I'm not hogging your wall here;)  But I had to leave my resounding YES, I do dig the IRL scene:)
Comment by Kelly Young on May 23, 2011 at 10:07pm
I agree with Jenny. And Ellen.  :D
Good luck Thursday Jenny!
I live near Disney & I get to meet people who are coming thru Orlando if they give me a heads up. I am thrilled to do it both for interviews or to hug RA sisters - what we call "rheum mates."

We also travel to do this some and it seems like a natural outgrowth of our work online.
Comment by Kelly Young on May 23, 2011 at 10:09pm
I love your post Ellen & I hope I get to meet you in person sometime this year!
I'll post our recent meetup photo if I can here. Looks like it might work. Yay WEGO!

Comment by Ellen S on May 24, 2011 at 10:58am
Oh Jenny, I'm so sorry I did't get a chance to meet in person when I was in Philly, but I still hope to meet you IRL another time.  And Kelly, we DO often get to the Orlando area, so let's connect the next time that happens!!!
Comment by Ellen S on May 24, 2011 at 11:00am
Jenny, why don't you post the link to the webinar here, just in case it gets missed elsewhere.  Can't wait to see how it goes - GOOD LUCK!!!!
Comment by JennyPettit on May 25, 2011 at 9:46pm
Ellen - here's the link to register for the webinar tomorrow (5/26), still plenty of time.  Thanks!

Kelly - love "rheum mates"; been trying to find a reason to bring that up in conversation for 2 days;)
Comment by naomicreek on July 6, 2011 at 8:32pm
I run an IRL support group for young women with arthritis (most have RA) and we also meet online, on our forum and facebook page. Most of the IRL members I know online too, but most of the online members I have never met in person, and would love to one day. They are all amazing women and all do their bit for raising awareness of the many auto-immune and joint diseases they have. I always feel so inspired and humbled after our meetings:)

I also do community speaking with different groups as a representative from Arthritis Victoria - it might be schools, elderly folk groups, rotary clubs etc about how the services that are available (which most don't know about), and how they can live a better life and manage their condition. It's lots of fun and I feel really great when I get to meet lots of wonderful people :)

Monday, May 16, 2011

16 Tweets for MS Awareness

I like scheduling tweets.  It's a great way for me to take my normally blabbery-mouth and make it slightly less annoying yet interesting.  Take a few simple awareness points or even a few myths that need busting.  Create a quickie tweet about it.  Make a list of a handful of said points and create some awareness about a single topic that lasts a whole week, or month, or year!

Today I'm picking on MS.  Multiple Sclerosis - an autoimmune disease profoundly affecting patients all over the world...

  1. #MS Myth: There is nothing I can do for my MS. WRONG. Early tx minimizes and slows the progress of this neurological disease. #spoonie
  2. #MS fact: about 2.5 million people worldwide have a Dx of MS #spoonie #healthactivist #autoimmunity
  3. #MS Myth buster: Having MS doesn't have to mean you will end up in a wheelchair. U can live a fabulous life with proper management #spoonie
  4. #MS fact: The earliest description of MS symptoms comes from 14th century Holland #spoonie #autoimmunity #HealthActivist
  5. #MS Myth: It's okay to wait to start medication. WRONG. Sooner Tx = Better outcome. #spoonie #autoimmunity #HealthActivist
  6. #MS Myth: MS is fatal. WRONG. MS is more often manageable than not. Effective early treatment helps prevent fatal outcomes #spoonie
  7. #MS Fact: MS is less frequently found in sunny, warm climates.  #spoonie #HealthActivist #autoimmunity
  8. #MS Fact: Scotland has the highest incidence of MS per capita in the world. #spoonie #HealthActivist #Autoimmunity
  9. #MS Fact: Pediatric MS may increase risk for childhood obesity #spoonie #HealthActivist #autoimmunity #diet
  10. #MS Fact: Having Mono and living in low sunlight may increase your chance for MS #spoonie #HealthActivist #autoimmunity
  11. #MS Fact: The chance of being Dx'd with MS is about 1 in 750 #spoonie #HealthActivist #autoimmunity
  12. #MS Fact: Remyelination happens very slowly in MS patients, but it does happen! #spoonie #HealthActivist #autoimmunity
  13. #MS Fact: MS Patients may have difficulty with memory of recent past #spoonie #HealthActivist #Autoimmunity
  14. #MS Myth: MS doesn't cause pain. WRONG.  MS can range from painless to excruciating. #spoonie #HealthActivist #Autoimmunity
  15. #MS Myth: Heavy Metals can cause MS. WRONG. Current evidence does NOT support this theory #spoonie #HealthActivist
Tweet away!!!
Comment by Alicia C. Staley on May 16, 2011 at 11:31am
Great list Ellen!  I have to borrow this idea for my cancer groups.  Thanks for putting this together.  I will share these tweets too! Thank you!!
Comment by Janeen on May 16, 2011 at 3:47pm
I think I'm going to borrow your list idea too :)  Thanks for sharing!
Comment by Ellen S on May 20, 2011 at 12:10am
It's been so long since I did one of these... it was fun to put together!  Hard to come up with interesting factoids, but I always learn something different too!

Alzheimer's Disease - Do You Disclose Your Diagnosis and Online Activities?

I make it a point to tell readers here that my life is pretty much an open book.  I have talked about nearly everything here, from losing my hair, to mistakes I've made in my personal and professional life, to answering questions about sex in the face of illness.  There's not a lot I leave out.

Or so I tell you...

In my real life, I do leave things out.  NONE of my doctors - not a single one - nor many of those I know personally are aware what I do here at WEGO Health or at  I choose to leave this part of my life out of medical and most personal conversations.

I have a good reason - honest.  Well, a few actually.

#1  I really prefer anonymity.  I would be a lovely wallflower, but I found early on that sometimes you need to put your name on what you're doing so that readers will take you seriously.  You have to invest something in what you are saying.  Be accountable.  Using my name is my way of being accountable for what I'm saying.  I hope that it gives patients and readers a reason to carefully consider what I might be talking about.  That said, I have no such needs in my personal life.  I expect my personal physicians to know and trust that I am fairly knowledgeable about my health.  I'm far from perfect, this is why I am constantly bugging them with questions.  However, there are too many physicians out there who don't bother to actually read what their blogger patients write... they simply assume they're wack-jobs.  *ouch*  I'm blessed to work online and to be reviewed by some of the foremost physicians in their fields.  That's enough for me for the present.

#2  I am a chronic pain patient.  As such, I already suffer terrible discrimination within health care as a whole.  I don't feel the need to set myself up for more by a doctor who is not open to the new and expanding world of health based social media.  I believe this ignorance about the benefits of health based social media and patient advocacy will change, sooner rather than later.  I fully expect that it probably won't be long now before I'll reveal to my personal doctors exactly what I do and where I am when I'm not in their offices.  I'll be sure to let you know how that goes :)

#3  Judgment.  Many of my friends and a majority of my family does not know about my work.  If they ask me, I tell them, but frankly, few have ever asked.  They are on my Facebook account and my Twitter account where I regularly post links to articles I've written, discussions and blog posts.  I figure, if they're that interested in me they'll ask and I'll tell them.  I don't like being judged for what I choose to do since I've been disabled by my health conditions.  I choose to think of what I'm doing as a patient advocate as important and helpful.  For many who don't understand what a patient advocate does, I am judged as wasting my time tinkering around on the internet instead of getting a "real life."  Yes, it bothers me.  But I will not stop what I'm doing so long as it serves a purpose and helps even one other person.

#4  TMI.  Honestly, unless you're suffering similar symptoms, who on earth would want to actually KNOW half of the things about me that I write about here?!  To someone unaffected by my health concerns, I'm probably pretty boring and more than a little annoying.

So that brings me to the question that started this post...

Do you tell people that you are a Health Activist?  How much do your doctors know about what you do online? Your family?  Your friends and neighbors? 

If they know, how do they react?  Do you find that it is a positive experience revealing what you're up to during the day on the computer?

Have you suffered negatively as a result of revealing your diagnosis or your website or community participation?

This Is Why I Am An MS Health Activist...

"What kind of MS do you have?"

"I don't have MS..."

This answer of mine usually takes patients and MS Health Activists a moment to absorb.

"Why are you involved in the MS community then?"

There is a little story that goes along with my answer....

Once upon a time I had a horse breeding business.  I also sold horses, and one day I received an email from someone who had seen one of my geldings on an auction site that I owned and ran.  She was in love with him and wanted more information.

I am very picky, and not everyone who has the desire and the cash for one of my horses just "gets" one.  I check out potential buyers for my "kids".  This time was no different and I took my time checking her out.  I was impressed...

ES Royal Valentino photo copyright Aaron Schnakenberg

Sharla and I spoke on the phone and emailed for months.  I took the gelding off the market despite the fact that she had not yet purchased him.  She was a good person and the right new owner for my gelding - I just knew it.  I was willing to hang onto him for however long necessary to see that she would get him.  Over a year later I was finally sending him off to California on a trailer to go to his new home with her.  I wasn't so sure that was going to happen though.  You see, I had become good friends with "S", and at one point I received a sad phone call from her that she had gotten a diagnosis of MS.

Eventually, her MS had progressed and she was depressed and overcome with the journey ahead of her, and one day had called me up to tell me she was making good on a promise she had made me the day I shipped gelding off to her... if ever she felt that she needed to find him another home because things got overwhelming for her health wise or otherwise, she would let me have a chance to purchase him back from her.  Her phone call that day didn't tell me I could buy him back from her, it told me she was shipping him back home to me again - at her expense.  She had made good her promise, and then some.

Now I ask you, how many people would do that for someone they had never yet met in person?  I was the one that was overwhelmed with gratitude, and I had to meet this wonderful girl I had come to love as a friend.  (To date this is the best gift anyone has ever given me)

My husband and I were going near LA for a conference, so this seemed like the perfect chance to meet this extraordinary person.  We made arrangements for dinner for the four of us - she and I and our hubbies - and we met at an Outback Steakhouse.  We recognized each other and immediately hit it off and spent the next day together.  It was an awesome visit with a really fabulous person.

We have known each other now for several years.  We speak regularly and our conversations can get long.  She calls my husband "Chad" (his real name is "D") just to tease him.  Through this time I have watched and listened to her as she struggles with RRMS... the struggles with her relationships, her horses, her job, herself.  I've listened with concern as she talks about her doctor's office visits, her medications, her symptoms.  I've listened to her laugh and cry, and joined her in both.

When I was approached to help WEGO Health with their MS community, I was thrilled.  I am still learning about the disease, but I am fairly well-versed at working within health communities, and enthusiastic about doing whatever I can in the MS community. I am also an autoimmune patient myself, as are many members of my family, and there are many things MS has in common with other autoimmune diseases - an area I'd really like to explore.

There are some FABULOUS MS Health Activists and I enjoy chatting with them online on Facebook, Twitter, here and other places.  MS crosses many boundaries.  There are many co-morbid conditions that are frequently found in patients, and although I don't suffer MS myself, I often am all too familiar with those other conditions.

I am on the outside looking in, and getting involved just the same.

Working with MS Health Activists is a passion because I love my friend.  I don't have to be here - I'm here because this is where I want to be.  There is no ulterior motive for me.  I want to see MS obliterated from the planet, but until that can happen I am content to helping do whatever I can in the way of education, spreading the good word of hope, and exploring conversations that can be helpful to the MS community as a whole.

Now you know my story... now tell us your story - why are you an MS Health Activist??!  Feel free to include links that will help us all get to know you and your place in cyberspace...

Saturday, May 14, 2011

Spring Cleaning My Life...

This is the season for stopping to take stock of the winter and look ahead to brighter, sunnier days.  In the old days, spring was a time to drag out all the old furniture, bedding... well, pretty much everything to give it a good once-over.  The task: clean everything so that the family would have a bright and shining new house to match the bright and shining new sun and the brand new season.  Spring is the season of rebirth.  It reminds us of renewal and starting over.

What do you want to tidy up this spring?  Some ideas might be:

++ Your blog - is it time for a cheerful life affirming post about good things?
++ Your community - is this a good time to revamp your site with new colors or graphics?
++ Your bedroom - open the curtains and bring out the spring bedspread so when you're stuck in bed it feels like a haven instead of a curse.
++ Your medicine cabinet - get out all those old bottles of medicine that are outdated or are not being used any longer.  Dispose of them properly and safely.
++ Your medicine safe - like your medicine cabinet, are there meds there that need to be cycled out or disposed of?
++ Your brain - are there people in your life that drag you down and hurt you?

Photo copyright Ellen Schnakenberg 2011 ~Bellagio Hotel, Las Vegas

++ Your yard - wouldn't the colors of a few garden flowers be refreshing to look at through the window on days you're cooped up because of your MS or other chronic illness?
++ Your friendships - we have a tendency to let old friendships wither during the winter.  Isn't now a great time to invite someone over for tea, or a barbecue, or just to drop a pretty hand made card on their doorstep... just so they know how much you care about them?!

As Health Activists we often forget about the need for renewal and things that are fresh to us.  Our community members will appreciate the reminder as much as we do when we open up the window to a fresh spring breeze and the sound of birds nesting in nearby trees.

As a patient and/or Health Activist, what do you find to be the toughest reminder of spring?  What do you find the most helpful thing to clean out of your life today??
Comment by Jack Barrette on May 14, 2011 at 11:20am
Comment by Amy K on May 14, 2011 at 1:13pm
Hi Ellen,
Although I am not an MS Health Activist, I believe this post is applicable to all health conditions! As I am going through the process of preparing for a move (in just a few days) I am unloading a lot of stuff! I have had a massive garage sale and now, as we pack, I keep discovering more and more things I need to let go of.
The process of letting go can be really difficult. I have had to part with some heirloom type pieces and some things that I just have a great emotional tie to, but on the flip side, I also get to rid myself of a lot of junk! I don't recommend undertaking these kind of massive feats (so close together) for the chronically ill, but in my scenario it had to be done.

I truly feel that my life is going to feel a lot less cluttered and simpler once we get resettled. I may even find that there is MORE for me to get rid of as we are moving to a much smaller space. For me, this undertaking is a reminder that less can be more when it comes to quality of life.

I am actually going to use my fancy dishes now on a regular basis because I didn't need or have room for two sets of dishes, the ones that were my daily use dishes are gone! That part is fun and freeing.

Monday, May 9, 2011

What Your Thyroid Cancer Doctor Forgot To Tell You

I recently ran into another patient who suffered terribly as a result of their doctor forgetting to tell them an important detail about their surgery.  In this case, it was a thyroid cancer patient who underwent total thyroidectomy and ended up in the hospital mere days later - alone.

Do you think she was frightened when her pulse raced, her BP went high as a kite and her limbs began to spasm uncontrollably?  You bet!

The sad thing is, she should have known this might happen to her and she didn't.  It resulted in a frantic call and an ambulance ride.

Unfortunately for thyroid cancer patients, removal of this small gland in your neck is not as easy as it might seem.  Not only does the thyroid tend to be a bit touchy (see Thyroid Storm) but it normally spends its life in an intimate embrace with a group of tiny rice-like glands called the Parathyroids which, when disturbed can get rather angry and a bit depressed.

Parathyroid glands

Your parathyroids are tiny rice sized little glands found between your thyroid and your esophagus.  Their purpose... to control the calcium in your body.

Think this sounds like an easy job?  It's not.  In fact, without our parathyroid glands doing their busy work *just right* we would die.

In the case of thyroidectomy, not only does the patient need to be aware of the possibility of a thyroid storm during or shortly after surgery, but they should be told about the parathyroid's propensity for drama when disturbed or damaged.

A skilled head and neck surgeon will carefully handle the thyroid in effort to keep the gland from dumping excessive hormone into the patient's system, but he/she will also handle it very carefully because he/she doesn't want the tiny parathyroid glands right beneath the thyroid to be damaged.  When these glands suffer injury, they tend to stop functioning.  This is called hypoparathyroidism and it is a fairly rare condition because we usually the surgeon working on a patient is skilled enough to avoid damaging the parathyroids.  When this injury occurs however, a serious calcium deficiency will result in hours or days.

What about blood calcium?

Calcium and phosphorous work together in balance.  When one is low, the other has a tendency to be high.

Calcium serves many functions in the human body including being responsible for: 1) electrical stimulation to our nervous system 2) electrical stimulation of muscles (including the heart) 3) bone strength.  Blood calcium also helps in influencing the clotting process in our blood and our mood and sense of well being.

Hypoparathyroidism Symptoms

The symptom of hypoparathyroidism is low calcium.  Yes, the PTH (parathyroid hormone) is also low, but the only function of PTH is to control calcium, so this only results in aberrant calcium levels and associated symptoms.  Symptoms can range from very mild, to life threatening and include:

++ tingling around the mouth and in the hands
++ muscle cramps (tetany)
++ seizures/convulsions

Why hypoparathyroidism?

This condition is rare, because most surgeons become skilled in the removal of thyroid tissue before they begin operating alone on patients.  In some cases the surgeon is not as skilled as he should be and these glands are accidentally removed or damaged.  Sometimes the surgeon knows this has happened... sometimes he doesn't.  Either way, a skilled surgeon is extremely unlikely to have a patient with hypoparathyroidism unless he has made a mistake.

There are side effects and contraindications to every surgery.  Every surgery carries with it the risk that something bad can happen to you.  Hypoparathyroidism is almost always preventable.  That said, every doctor should tell every patient before every surgery that hypoparathyroidism is a possible outcome.  They should also be told the treatment for it:  A calcium supplement.

If you suspect that you or someone you know may have hypoparathyroidism, seek immediate medical attention.  Try to keep the patient calm and inactive.  If you choose to call ambulance personnel, tell them your patient has had a thyroidectomy and what his/her symptoms are so the ambulance crew can be prepared.  This gives them the opportunity to talk to each other and to a doctor if they have access to one in preparation for their visit.  In the meantime, talk to the patient and take a medical history in writing.  What medicines do they take and how much as well as when?  When did they last eat?  Who are their doctors?  What medical conditions do they have?  Allergies?  Be specific.  Doing this is very helpful to the ambulance personnel who will try to help you, but it will also keep the patient's mind off their spasms etc.  If the patient has calcium tablets nearby, they might wish to try to take one in case it may help.  However, doing this may alter blood levels leading to a delayed diagnosis by physicians.    

In this article, it's estimated that 60% of physicians never tell their patients that their parathyroid glands may be injured or removed accidentally during surgery and hypoparathyrodism may result.  It also notes that during their study, the odds that a patient may end up with hypoparathyroidism was almost always dependent upon the number of surgeries the physician performed on a regular basis.  It also notes that when questioned, physician overestimated the number of surgeries they performed twice over!  Moreover, 61% of patients reported that their surgeon never told them the reason for their hypoparathyroidism was a mistaken removal of their parathyroid glands!

For more information on parathyroidism, see the Hypoparathyroidism Association Inc.

Sunday, May 8, 2011

Storms You Won't Find In A Weather Forecast

Hail storms, rain storms, thunder and lightning storms... even snow storms are something we're used to hearing about from day to day.  We turn on the news and a meteorologist or reporter tells us what kind of weather we had today, and what we might expect from the next day or week.  Those weather reports help us to plan and execute our day to day lives.  We depend on them.  Most of us wouldn't have a clue what to do if suddenly we were unable to predict the weather!

But there are other kinds of storms that you won't be hearing about in your local, regional or even national weather forecast. These kinds of storms affect us much more profoundly than mere rain or lightning...

Sometimes the body overreacts in a way that causes extreme production or dumping of something that is naturally already a part of our systems which work normally to keep us healthy.  When this happens we sometimes call this a "Storm".

I have friends that have dealt with these issues in the recent past, so for the next two days I'm going to tell you about two of them...

Thyroid Storm

Normally, our thyroids are small butterfly shaped glands in the front of our neck, just above the collar bone and under the voice box (larnyx).  Its job it to produce hormones that help to regulate our metabolism.  Thyroid hormones work to regulate the metabolism of every single cell in our bodies!  Without a thyroid to do this important work, we would die.

Sometimes things go wrong with a thyroid gland.  Often the gland may become inflammed, damaged, or simply stop working as it should.  We call this thyroid dysfunction.

There are many types of thyroid dysfunction.  Some types are caused by the immune system's attack on our glands.  Two of these attackers have interesting names:  Graves' disease (usually hypERthyroidism) and Hashimoto's thyroiditis (usually hypOthyroidism).  Some types are caused by small growths called nodules that can form in our glands.  These growths, or nodules, may or may not be cancerous, but there are two main types - hot nodules, and cold nodules.  A cold nodule is a spot of tissue that has stopped creating thyroid hormones.  You might think of it like being frozen so it can't function.  A hot nodule is a spot of tissue that is hyperactive and creating thyroid hormone - sometimes in excess.  It is working very hard and fast, like you would if you were trying to walk barefooted on hot concrete.  Sometimes thyroid dysfunction can be the result of injury, or even medicine or special dyes we are given for x-ray imaging.  Not eating enough, or properly can also cause thyroid dysfunction as can pregnancy and delivery, stress, infection or illness, or even simply palpating (touching or manipulating) the thyroid can also be risk factors for thyroid dysfunction... or storm.

Sometimes, when conditions are just right, the thyroid can cause a storm - a superload of thyroid hormone is either secreted or dumped into the system, causing an overwhelming response. A thyroid storm is much like driving your car with the accelerator pedal to the floor and no brakes.  It is uncontrollable and VERY dangerous.

The symptoms of thyroid storm include:

++ Increased heart rate which can result in tachycardia or even heart attack.
++ Increased blood pressure which can be severe and result in stroke or death.
++ Severe anxiety, delirium, psychosis
++ Increased body temperature which may feel like a fever.
++ Chest pain, difficulty breathing
++ Nausea, vomiting, diarrhea
++ Exaggerated reflexes
++ Exhaustion or fatigue

What happens?

Graves' Disease is a frequent cause of thyroid storm.  The gland is stimulated to overproduce thyroid hormone in such large amounts that metabolism is increased and symptoms occur. When Graves' Disease patients die, it is often the result of an unpredictable storm.

Hashimoto's Thyroiditis usually causes low thyroid, but in some cases toxicosis can occur and can result in thyroid storm symptoms.  Most often the thyroid is induced to "dump" a large amount of hormone spontaneously as a result of the illness/inflammation and its destructive action on the thyroid.

Hot nodules can be unpredictable and can spontaneously "dump" hormone into the system with little or no provacation.  While cold nodules often are left in the thyroid because they cause little trouble, hot nodules are often removed to keep the patient safe.

Thyroid surgery can result in storm when the thyroid gland is handled during the procedure causing it to react by dumping excess hormone.  Unfortunately patients are sometimes not informed of this complication and may become very frightened if it occurs... and rightly so.

Pregnancy and delivery are common times for thyroid storm to occur.  The stress on the body can stimulate autoimmune activity that results in the dumping of hormone into the system.  The same is true for illness or injury or surgery unrelated to the thyroid gland itself.

Withdrawal of anti-thyroid medications like those given for Graves' disease can result in a rebound effect and storm

Dyes injected into the system for X-ray imaging can sometimes cause a thryoid storm.  The dyes are iodine based and iodine is the fuel for the thyroid.  Giving dyes in some instances can be like tossing gasoline onto a fire.

Excess iodine, especially when given in the presence of autoimmune disease or a hot nodule can overfuel the thyroid resulting in the production of excess hormone.  Iodine supplementation should be done carefully and only with the supervision of a thyroid specialist to avoid this event.

Radioactive Iodine Ablation - this common treatment for Graves' disease involves ingesting large amounts of I-131 (radioactive iodine) which settles into the thyroid causing destruction of the gland.  One way to think of RAI is a bomb that goes off very slowly, over a period of days to years.  When this destruction happens the gland can react by dumping excessive amounts of hormone into the body resulting in symptoms.  Thyroid patients are rarely warned of this potential side effect in the United States.

Palpation or manipulation of the gland irritates it and it may react by dumping excess hormone, just as in a surgical setting.

If you suspect you or someone you know may be having a thyroid storm, it is vitally important that you seek immediate medical attention. Thyroid storm can happen very very quickly and is a very dangerous situation.

If you have reason to suspect thyroid storm you may want to call an ambulance.  If you choose to do this, be sure and inform them that you suspect a thyroid storm, and why.  This will help them in making decisions how to treat the patient.  Try to keep the patient calm and as relaxed and comfortable as physically possible.  While you are waiting for the ambulance to arrive, you can help to gather together a short written medical history of the patient as well as the names of any medications they may have taken, how much and when.  Note the time the patient last ate as well as the names and phone numbers of any current physicians.  Putting together this information will help the patient to concentrate on the task at hand instead of the increasing symptoms and feelings that may be similar to an enormous adrenaline rush.