Remain Calm…You Are Not Crazy!

Remain Calm…You Are Not Crazy!

brain.fog.perry

In a fog? Check your blood calcium!

A year ago we posted  It’s A No Brainer – High Calcium is Bad  to raise awareness of one of the elusive neurological symptoms of Primary  Hyperparathyroid Disease. The blog was linked to our Facebook page  where many of you publicly shared your experiences with brain fog in order to broaden awareness, and understanding of, this aspect of primary hyperparathyroidism. Often pHPT patients who experience this symptom believe incorrectly, that they are losing their minds. We are grateful that so many of you were willing to be forthcoming by sharing your experiences in order to help others make sense of their own situations.

Why does this happen? A normal calcium level is necessary for our brains to function properly.  With high and /or fluctuating calcium levels, the delicate balance is upset. Synaptic signaling is disrupted which means that the connections between nerves don’t fire like they are supposed to. The high blood calcium levels cause energy to fall, and memory and concentration to fade. Sleep is often disturbed: some patients can’t get to sleep or stay asleep, while others sleep all of the time and don’t feel rested when they wake up. This is all very frustrating and confusing.

Here are some of the responses that were posted to help those of you who are currently suffering from brain fog associated with pHPT . Perhaps you can relate….

1) I’m not sure if mine is brain fog. I cannot find words I want (dandelion was one the other day), I take longer to answer questions, or don’t understand questions people ask me. I have horrible memory.

2) Brain fog is very real with this diagnosis. My former boss and friend of over 35 years noticed it in me. After my surgery at the hands of Dr. Norman in 2011 I noticed an immediate improvement and so did she! Have never felt better and would not delay in making the decision to “go to Tampa. ”

3) Brain fog for me was not being able to remember the simplest things! My mind could not work fast enough to keep up with a logical conversation! Words, names, places all would escape me. I was no longer able to read, my comprehension was gone, it was fruitless! I don’t know how many times I would start the same book-just to forget the plot and characters!

4) I couldn’t keep track of what I was saying! I’d lose my train of thought always. People who know me finished my sentences. I couldn’t read and certainly couldn’t remember what it was I was reading. After the surgery everything seemed to get back to normal!! Don’t hesitate on the surgery.

5) Brain fog for me started with an almost sleepwalking feeling, not really noticing my limbs until i walked into something or stubbed my toe or opened the cabinet door into my head, and then it progressed to feeling like I really shouldn’t be driving because i was I felt like i was in a dream state or that I may fall asleep at a stoplight, and my speech got worse and worse, some days my Husband would just look at me until i could finish my sentence or try to guess what i was going to say. Also, if I was speaking and someone would interrupt me, I could not ever remember what i was talking about.

6) It could be anything from not being able to think of a word I wanted in a simple conversation, to losing the complete train of thought.. Or I could be shopping, go for the noodles, and have no clue where they were.( thank goodness for signs!) and it could happen when I was driving. I would know where I wanted to go,( having been there fifty thousand times) but couldn’t remember the way.. It would really throw me for a loop! I’d forget simple things, things I’d already asked.. It just varied, but it was very very real. When it came to speech, at times it was though my brain could not form how to say that word.. Like there was no connection between my brain and tongue. Really weird, and at times very frightening. Even though I knew why, lots wouldn’t believe that was the issue. I literally felt like I had cotton for brains sometimes.

7) I am still waiting for a successful surgery, but my brain fog became concerning enough to start bringing it up to doctors about 5 years ago. It has gotten progressively worse since then. Multitasking and having to quickly switch gears mentally are especially hard for me. My memory is terrible as well. One example: As an IT Support tech, I would frequently have to remotely connect to people’s computers remotely to run scans, install software, etc. while also taking incoming calls. I started having a problem of having these remote connections open to computers and have no idea who it was or why I was connected. It wasn’t long before people started complaining and my manager brought it up in my annual review. Another embarrassing aspect of it is when I am in the middle of a conversation and suddenly, not only do I not remember what I was about to say, but I can’t even remember what we were talking about at all. When that happens, I tend to try to quickly change the subject or find a way to stall until I can remember what we were talking about. Obviously that can be frightening and concerning, but my doctors tended to brush this sort of thing off as not getting enough sleep or something.

8) I was in a furniture store and could not figure out how to get to my bank across the street. Frustrating and embarrassing. I couldn’t remember how to get to my mothers house and passed her street.

9) I had my 1 large parathyroid tumor removed exactly one year ago. This is my primary symptom. While most other symptoms such as joint pain, especially in the knees are long gone, my foggy memory remains. The best example I can use is that it is so frustrating. Its like being a computer where Windows freezes up for 5-10 seconds and your mouse won’t even move. It interrupts my ability to function on most days. Other days it hurts too much to think literally so I just become disinterested or I give up on even seemingly simple projects to other people because I’m too frustrated to try any longer. I feel that I should be able to at least have a general capacity to think. My idea about this is that since I had my parathyroid tumor for around 15 years (much longer than many have their tumors) that much more damage was done over a longer period of time making the brain healing side of things a longer process if not impossible to ever get back to normal on that aspect of my body.

10) mine was very bad. i use to tell my daughter my brain knows what i want to say but i cant get my mouth to say it. or i would count my money and 5 minutes later not remember how much money i had. i would get in my car and forget how to get to the store or how to get home. i used to have to call my mom and ask how to make a meatloaf that i had made 100 times before because i had forgotten how to make recipes. i used to set a timer for everything. if i let the dog out i would set the timer if it was winter so i wouldn’t forget him in the cold. if i was filling the tub i would set a timer so it wouldn’t over flow. i did this for years and one day i was diagnosed with this disease. i was operated on feb 12th and i m finally seeing a difference. we all thought i had early onset Alzheimer’s. crazy huh

11) For anyone who has watched a love one develop dementia…that is what it is like.In my case, not being able to say the words I mean and stumbling over many words. I sometimes sounded foreign.Going blank mid sentence.I stopped talking to people because I had become so anxious about looking stupid.Forgetting how to carry out daily tasks such as washing my hair or even how to drive.Not being able to concentrate.Definitely one of the scariest symptoms of PHPT.I was a 30 year old thinking I had dementia (my nan went through this possibly due to undiagnosed PHPT and further complications)But on the plus side, as bad as I was, now 5months post op I can walk again, talk again and my driving is back to awesome 🙂

12) Forgetfulness, difficulty finding the right words to say…not as mentally sharp as I once was.

13)  I had my surgery in Tampa, July, 2012…..I found that processing information took longer for me, also I was forgetful.

14) I felt like I was losing it! I am now 6 months post-surgery and am feeling soooooo much better mentally and physically! God Bless the Norman Parathyroid Center – one of the best decisions I have ever made!

15) For me it is several different things. A lot of the time the information is right there but just being blocked. And other times I just lose all thoughts. It’s very scary and frustrating. Many times very embarrassing especially at work. I look like an idiot or space case. I feel like times I just go blank and other times like an opaque shower door is in the way of my brain as I fight to get the information I need but not always able to get. I forget people’s names who I’ve known for many years. I start to stumble over my words, stutter and slur them. Many times I can’t name a simple everyday object. I know what it is I just can’t say the word so I give up. I just go completely blank. I say and um and um a lot. Concentration is very difficult and memory sucks. Sometimes I just sit not thinking and not doing. It sucks. It’s honestly kind of hard to explain. It’s so much more but I can’t give the explanation justice. It’s so much more than leaving the iron plugged in. Things that are always automatic are not always automatic. For example There have been times when it takes me a moment to figure out how to use my windshield wipers when I’ve been driving the same car for 8-10 years…

16) I felt like my vision was always blurry. I couldn’t think clearly or remember where I put things or where I was going. Many times I would be driving and not remember where I was going and I would have to ask the person with me to remind me. I would even forget the names of people I have known for aping time ( it is 8 months since my surgery n this still happens but not as often) .

17) I had bad brain fog. No matter how hard I tried, I could not get things straight. Couldn’t “absorb” what I was hearing during a conversation, or remember what I had read. Start to say something and lose my train of thought. I had trouble doing paperwork that I’d done for years. Zero ability to concentrate. I had no thought process. Had trouble actually saying words. On occasion, I have actually felt like I had “lost time”, if that makes any sense.

18) I would be talking to someone ,and right in the middle of it, I would forget the right words to finish and would just stand there looking dumb. Had to write everything down because I couldn’t remember things.I had my 2 tumors removed June 2014 by Dr. Norman after having HPT for at least 16 years. I still have a lot of that brain fog.

19)  It really came home to me that something was really wrong when I was going to pick up the mail from our PO box in town- about 3 miles from our office. I had been making this daily errand for over 45 years! It involves a drive down only three main streets. I had made it down two streets when suddenly I realized I absolutely had NO IDEA which way to turn and couldn’t even visualize

20) It’s been a year since my surgery. I can sometimes remember what I came In a room for now. But I still struggle daily though. someone can tell me something and I immediately forget what they told me or someone will speak to me and I don’t even hear them. I have noticed I’m able to do sudoku puzzles again so I think it’s getting better.

21) This is so all me too! I get so embarrassed at not being able to find words and everyone just thinks I’m getting ‘older’. So very frustrating!!

22) Wow, what a relief to hear all of your struggles with your memory and speech. I have seen deterioration in my ability to not only remember things, but have a hard time getting the word I want and then when I do, it doesn’t come out right. It’s so frustrating! I have gone undiagnosed for at least 10 years and I’m only 42. I’m excited to be heading to Tampa day after tomorrow to have my surgery. I’m scared to hear that it may take quite a while for this symptom to improve, but I’m hopeful that by this time next week, I will be free from the debilitating fatigue, joint pain, and stiffness that is taking the joy out of my life.

23)  I’m 2 years post-op. this May 28th. 2 upper adenomas removed by Drs. Politz & Lopez @ NPC in Tampa. (Self-referred ). Prior to my surgery, my husband and I would try to have a conversation. I couldn’t focus on the discussion. The next day, I would ask him a question and he would say, “We talked about that last night”. I would argue with him…..”No, we didn’t”! If someone called on the phone, I had to write down everything so I could tell my husband or I would not remember! I was a teacher for 30 years and ideas, language, names, subject matter, etc., came to me very quickly then. I was never at a loss for words. Prior to surgery, I began staying home, sleeping all day, stopping cooking , reading, watching TV, and driving….too exhausted…and, I had lost all interest. All body/joint pain was gone immediately after my surgery. Foggy brain took about 3-6 months to improve. My husband and I noticed the improvement at the same time! Foggy brain is completely gone now, and I recently finished an 860 page novel in 3 days!!!

24) I still have hyperparathyroidism. I am praying that Dr. Norman can help me. I had to retire from teaching after 34 years as I could not carry on a professional conversation with my coworkers. Add the lethargy, fatigue, and deep bone aching and I’m still a basket case. The brain fog is difficult for me to make others understand. Words are swimming around in my head and I can not draw them into the sentence so that what I’m saying makes sense to others. I go to Tampa June 24th. Can’t wait to have my life back. I, too, have had hyperparathyroidism for at least 16-18 years. I have had 3 different endocrinologists. My doctors just kept saying “well your calcium is not that high.” Then, “come back in 6 months. Calcium was usually somewhere between 10 and 11. Dr. Norman called me the same evening he got my records. My story is very much the same as so many others I have read about. I am so thankful that there are others out there who understand the frustration, physical symptoms, and brain fog I feel.

25) I feel like the top of my brain is ‘clogged.’ The scariest thing is that I can’t express myself via the written word with clarity, which I’ve always prided myself on. I help people with resumes, writing grants as well as writing my own essays, book reviews, etc. I look at the words and can’t arrange them how I want to. I’m a great editor and it’s just frustrating now to do editing as I’ve always loved doing it. (I had to reread the above several times to make sure it made sense.) And it was exhausting to do so. In other words, my brain is tired after these tasks. Forgetfulness has sped up in the last year–too fast to be normal.

26) Blurred vision, attention span of a goldfish, not understanding or hearing what’s been said to me, it’s like burbling of nonsense words, forgetting stuff, talking complete rubbish, not being able to concentrate on simple tasks. I swear I feel pressure on my skull when I’m at my worst too. Happening more and more often too.

27) Had avery difficult time finding words that used to flow so easily. Folks around me had about one or two minutes of my concentration before I could no longer pay attention. The worst was the constant word search. Sounded like a stumbling Stan

28) Blurry vision forgetfulness writing or posting on Fb is difficult. Finding the right words to express myself. Thank goodness for spell check.I am heading to Tampa for surgery this Friday and I have to write everything down so I don’t forget. Also decline in cognitive ability.It is comforting to read the positive experiences and that it will get better.

29)  I look at a “computer”. I know it’s a computer……but the word is lost. So I describe it as a box, that has Internet (If I can remember that word ) and I use a keyboard. There is nothing in my brain at all. It’s completely empty of things that I know how to do, to say, names of people, etc.. And I can’t retain anything new.

30) Putting stuff away in the wrong place, especially in my kitchen drawers is my biggest problem, also going into a room and completely forgetting what I went to get. Takes several minutes for it to come to me. Had my surgery April 27, 2016 , changes haven’t kicked in yet since I had high serum calcium for at least 10 years that I can find in my medical records. So looking forward to the improvement!!

31) I still have brain fog on some days…lol…but I rock it on most other days when I have a great day (my background is that I had a successful surgery about 4+ yrs. ago). The brain fog sometimes now might be due to thyroid issues instead of parathyroid issues. A recent example is that I accidentally stuck a can of whip cream in the freezer. I was being a great party hostess that day but got distracted and ended up putting the whip cream in the freezer along with the ice cream that someone brought to the house…lol…you can’t be too hard on yourself though…we all have our good and some bad days 😉

32) All of the above symptoms, but also vision impairment. If I could navigate further than one hour from home, I would fall asleep while driving, sooo dangerous. Then, finding my way home again was always challenging.

33) Just adding a little more to this informative thread. Disassociation of emotions was a very disturbing symptom. I am/was a very empathetic and caring person, perhaps a little too much at times. During the course of this disease I lost the ability to feel emotion, any emotion, which was incredibly difficult to deal with, but also unreal as I couldn’t formulate an understanding of this. Many of these symptoms are the same as a person with a brain injury, a bit scary to think of that, however if using that framework provides a great deal of insight into the course of this disease.

34) Some days I just was not thinking clearly and I knew it. Sometimes it bordered on being a bit off like being in motion when I was not. Before my surgery it was often difficult to process more than one thought at a time and it was almost impossible to get any task started and then if I did, to get it finished. It seemed like I wandered aimlessly through the house on a daily basis with nothing accomplished as a result. Picking up and putting things down. I now am able to order my day and accomplish daily tasks in an efficient manner and feel good about what I have gotten done. That scalpel in the hands of expert surgeons made all the difference and I have ‪Parathyroid Disease Awareness Group: Norman Parathyroid Center to thank for getting my life back.

35) It’s been two weeks today since the surgery to remove my hyper parathyroid. My worst symptoms were fatigue and memory loss. I thought it was part of getting older and I was worried that I was going to have to quit my job. Too often, I just could not think of the word I wanted to say. I am so thankful that my family Dr referred me to a knowledgable endocrinologist who diagnosed me and the wonderful surgeon who removed the hyper parathyroid. I could not afford to go to Dr Norman but I did my research and ask all the questions that were suggested on ‪parathyroid.com I feel great now and so happy to be my old self again!

36) this post is amazing. i have already posted but just read everyones posts. its such a terribly scarely thing to go through and no one understands. its WONDERFUL to read your posts and to know. You all understand. i remember one time my son needed to look a car place to have something done to his car and i opened up my laptop and i looked at my husband and my son and i said how do you spell wibbly (that was the name of the place) and they both looked at me and told me the date. I looked at them and said “what did i ask you” and they said you asked us the date and i started to cry and said i was asking you how to spell wibbly. But that is not what came out of my mouth. I had this for over 20 years. they know this cause i was passing kidney stones in the early 90s and know one knew why. no one ever knew why. i couldn’t go out because i couldn’t find the write words to come out of my mouth sometimes or remember how to get home and i would have anxiety attacks. ANYWAY you all understand you all have just told my story in your post right here. and i think you are all wonderful and hope all of you get better soon. this group is so great ❤

37) its so wonderful to have people understand what we are going through. ABSOLUTELY. even with the blurry vision it comes and goes. i had an eye doctor tell me right to my face ” that is impossible. either your eye site goes or it doesn’t” well with this disease you can have blurry vision one day and it can be clearer the next. Thats the way this disease is and no one understands but us. this is so REAL

38) Hearing a question but having no comprehension how to answer it… not being able to talk logically or focus my mind. Not being able to concentrate or follow any conversation or tv programme, or even read an article in a paper as I forgot what it was about before the end of the first sentence. Words coming out backwards or jumbled up. Physical pain in my head trying to remember words… thankfully it all went back to normal within weeks of surgery. My mind is clear and memory pretty good 😉

39) My brain fog was getting worse every day and the exhaustion left me feeling like I’d been hit with a Mac Truck. I really was losing the words I wanted to say or complete thoughts, which is really hard for me since I’m a Speech-Language Pathologist! I don’t think I’ll even know how bad it was until I start feeling better. I had surgery today!!! So hopefully this goes away soon.

40) My surgery was on 1/13/16. My worst symptoms were exhaustion and pain. However, brain fog was also a big thing for me. My ability to focus, organize were not there. I felt incapable of doing my work because I couldn’t keep up with the demand. My job deals with lots of paperwork, so if I fell behind I ended up with even more work. I was on a constant cycle of being overwhelmed. Prior to my diagnosis I was feeling so incompetent. After surgery things have improved greatly although some days I feel as though I’m back to my preoperative state. The struggle is so real with hyperparathyroidism. I know my biggest issue was/is how little understanding people have of this debilitating disorder.

Purpose of Our Website  Because of brain fog, when we are in the throes of the illness and need to be able to process information about our condition, our brains fail us! Knowing this, we designed this website to outline simply the issues pHPT patients may be having, and to provide useful information from what we learned from our own experiences and those of others. We hope the information is helpful to you in navigating your own journey.

 

Great Strides Made in 2016 … 16,436 visitors, 26 blog posts, 6 Meet-ups, a Peep Retreat and more!

Great Strides Made in 2016 … 16,436 visitors, 26 blog posts, 6 Meet-ups, a Peep Retreat and more!

Screen Shot 2016-08-03 at 6.35.59 PMWe are thrilled to report the great strides we’ve made in 2016, only two short years since the 3 of us met and started our journey together as the Parathyroid Peeps.

This past year the number of visitors to our website totaled 16,436, a 43% increase over 2015. These visitors included people from 100 countries! We hope that we have helped ease your burden in some way by sharing our stories and content.

We hosted a total of six meet-ups, five of which were held in the San Francisco Bay area and one  in Tampa, Florida . The three of us returned to  the Norman Parathyroid Center  where we had our surgeries -Barbara in 2011, Joyce in 2013 and Sophie in 2014 – but this time as advocates instead of patients,where we  met with their team of surgeons and  learned as much as we could from the experts to help us strategize how to advance our mission of raising awareness and advocating for the most advanced surgical techniques to become the standard of care for all patients.

We posted 26 blog posts with the help of some fantastic guest bloggers including  Brittany Kenyon – March 17th  and Lora Parks – April 5th. These incredible women bravely shared their stories with all of you in hopes of making your journey a little easier perhaps.  

If you didn’t catch our podcasts with parathyroid troopers Barbara Johnson on February 18 and Janet Filippi August 23, we invite you to listen to them when you have a moment. Listening to these  two delightful, articulate  women tell their stories is powerful.

We also hosted and produced two podcasts with Dr. Douglas Politz. you can learn more about this expert surgeon  here. The topic covered were Rare Causes of Hyperparathyroidism and Hypercalcium and a Q&A with questions submitted from our followers. Check out all eight podcasts produced to date to have many of your questions answered.

Another huge accomplishment was our coordinating and hosting an expanded 2nd Annual Parathyroid Peeps retreat at the Miraval Resort and Spa in Tucson, Arizona. This was a huge endeavor! We couldn’t have achieved this goal without the expertise of and the amazing support from our fabulous speakers, Dr. Deva Boone from the Norman Parathyroid Center, Sandi Putnam fellow advocate and Founder of the Tucson Bone Girls Club,  Lynn Perkins  CEO and Founder of  UrbanSitter and Psychologist and Consultant Dr. Jean McPhee

We’d love to give a shout out to all the special people who we have connected with but that simply isn’t t possible here. We are grateful to those who helped by  submitting data  in relation to how labs report calcium values, donated raffle prizes to the retreat event, faithfully attended meet ups, sent us books to review and have offered to be speakers at future events.

In the end it all comes down to making a difference in the lives of people suffering from primary hyperparathyroid disease. E-mails like this one written by Joanne keep us moving forward in this journey with all of you….

Ladies! You saved my life! Especially Joyce’s story! I have been reading her story for about a year now and finally self referred myself to Tampa! I was in the gray area, kind of like Joyce, but proceeded on with 90% rating. Today, Jan 13th, I had two tumors removed! I need to share my story and spread the word!

Together we can continue to work to create change so that….

  • Primary hyperparathyroid disease is clearly understood by the medical and mental health communities and is considered as a possible root cause when physical and/or mental symptoms associated with the disease are present.
  • Medical professionals are familiar with the various biochemical presentations and associated symptoms.
  • Appropriate blood tests are ordered and values are properly evaluated to determine if calcium is high and outside of the tight range that is considered normal and/or parathyroid hormone levels are elevated.
  • Normal range for calcium values are consistent from lab to lab and take into consideration a patients age, with 10.1 being the high end of normal for adults age 30+
  • The asymptomatic label is lifted and the wide range of symptoms patients do experience will be recognized as being related to pHPT.
  • Medical professional are educated and clearly understand that those patients labeled as asymptomatic, as well as symptomatic patients, benefit from surgery.
  • The medical community is aware of the most advanced surgical techniques available to perform parathyroidectomies and surgeons are highly trained to execute the appropriate technique(s).

To learn more read our ACTION PLAN

Looking forward to another productive year in 2017!

Maureen’s Story -Diagnosis Twelve Years Too Late

Maureen is sharing her story with the hope of helping others avoid the needless suffering that she endured as a result of primary hyperparathyroid disease going undiagnosed for so many years.

This website is not designed to, and should not be construed to, provide medical advice, professional diagnosis, opinion or treatment to you or any other individual, and is not intended as a substitute for medical or professional care and treatment.Please read our terms of use and disclaimer.

MAUREEN’S STORY

I was diagnosed with osteoporosis in 1999 after I broke my right foot stepping on a shoe in my closet.  I was put on Actonel and my bone density remained fairly constant during the next 12 years and my calcium levels were between 9.9 and 10.3 (as I learned later, a big red flag).

In August 2011 I broke a bone in my left foot (same bone as on right foot in 1999).  In November 2011 I was getting pre operation lab tests for a total knee replacement scheduled for that December.  The test showed high blood pressure, mitral valve calcification and high calcium of 10.5 and low vitamin D.  I was overcome with anxiety and even had brief bouts of depression which I never had before.  I cancelled the knee operation because of the anxiety.  On Thanksgiving Day of that year, I slipped on ice and broke my left wrist and had surgery to put in a plate and nine screws.  In December I had my first ever parathyroid hormone (PTH) blood test and it was a very high 118 (normal 20 to 65).  This led my endocrinologist to order a 24 hour urine test which came back a high 483 (normal 100 to 300) which indicated a lot of calcium in my urine which led to a diagnosis of primary hyperparathyroidism, unfortunately for me, twelve years too late.

Having never heard of hyperparathyroidism, I googled that word and the first hit I got within seconds was for the Norman Parathyroid Center in Tampa, Florida.  After much research of many other hospitals and doctors over the next few weeks as well as interviews with friends and relatives who had the disease, it became apparent to me that the Norman Parathyroid Center was the center of excellence in the world for this disease.  I sent my medical records to them and had a phone consultation with Dr. Lopez a few days later. I went to Tampa and on February 9, 2012 and Dr. Douglas Politz removed two bad parathyroid glands in a 20 minute operation with a one inch incision.  Two hours later, I was told to “go home, you are cured”.  Today, you cannot see any scar.

My anxiety, acid reflux, depression and sleeplessness went away within days and my high blood pressure resolved over the next several months.  I stopped taking Actonel and my bone density slowly increased.  I have not broken any more bones.

I feel that, if the root cause of my osteoporosis was sought in 1999 and found to be malfunctioning parathyroid glands, I would have been spared a dozen years of medical issues and diminished quality of life caused by hyperparathyroidism.  Since this had happened to me, I imagined that it probably was happening to many others, so, I decided to start telling others about my experience.

Within a few weeks I found two of my friends in a similar situation.  One was being “monitored” for possible hyperparathyroidism.  After I told her my story she contacted the Norman Parathyroid Center, sent them her lab work and, based on their diagnosis of the disease, she went to Tampa where they took out a bad gland and she was cured.

Another friend told me that she had surgery locally for parathyroid gland removal two years prior but that her calcium levels were still high.  I told her to get to Tampa as soon as possible because they must have left a bad one (s) in.  She went to Tampa and Dr. Norman took out two bad parathyroid glands and determined that the one the local doctor had taken out was a good one.  She is now cured and functions well with the one remaining healthy parathyroid gland.

An acquaintance of mine responded to an e-mail I sent out shortly after my surgery with information about the disease.  She told me that she had parathyroid surgery in 2002 and that it was a major event that took hours with an incision that went “ear to ear”.  In fact she said “they jokingly referred to me in the recovery room as a PEZ dispenser” because of the shape and size of the incision.

Based on my experience, I would advise everyone to find out what their calcium levels are (most physical exams have this as a standard test) and if the number is about 10 or higher or fluctuating up and down around 10,  to get another blood test for PTH.  If that result is other than low (0-20) you likely have hyperparathyroidism.

In my opinion the two main problems in the medical profession with regard to diagnosing this disease is that the “normal” calcium levels are too high and that when a PTH test is ordered and comes back “normal” (20 to 65), many doctors miss the diagnosis.  The reason a “normal” reading is an indicator that someone has the disease is that if your blood calcium levels are high (over 10) your parathyroid glands should not be putting out “normal” amounts of PTH asking for more calcium to be taken out of your bones.  I also feel that, since almost all people with hyperparathyroidism have osteopenia or osteoporosis, those folks should get both calcium and PTH blood tests.

Problems exist also with surgery. Those surgeons not well versed with the operation may not be able to find the bad gland(s), or worse take out a good one.  Also the degree of skill needed to perform the operation well is very high.  Be sure to find out how many of these surgeries your potential doctor has done and what the results were.  Norman Parathyroid Center does about 68 a week*.

The bottom line is that, with a well informed and experienced medical team, this disease is very easily diagnosed and cured.

* Cite source:  www.parathyroid.com page 1.

Editor’s Notes: It is estimated that 1 in 50 women over the age of 50 suffer from primary hyperparathyroid disease. Primary hyperparathyroidism results when one or more adenomas (non-cancerous tumors) form in one or more of the parathyroid glands and secrete too much parathyroid hormone (PTH), which disrupts calcium regulation, leading to hypercalcemia, or high calcium in the blood.  Men also get the disease so it is important for ALL of us, as we age, to check our blood serum calcium values.  High blood calcium is bad! Blood calcium is included in the comprehensive blood work panel routinely ordered for an annual physical check-up.

So what’s the problem, if blood calcium is routinely checked? Well…. what is considered a “normal” range depends on a person’s age. For example, teenagers and people in their early 20’s can have calcium levels up to 10.7 mg/dl. However, once you are over 30, you should have all calcium levels in the 9’s with the upper limit of normal being 10.0 or 10.1 mg/dl. A mature adult with calcium levels in the 10’s is very likely to have a parathyroid tumor. Because many labs report the normal range as an average of all the age groups, or report the top value of the range too high, as Maureen alludes to in her story, patients often go undiagnosed for years unless the doctor is particularly astute.

Help us raise awareness among the general public and medical professionals to improve the timeliness of diagnosis! If you or someone you know has symptoms share this information with them so they can rule out primary hyperparathyroid disease as a possible root cause.

Calculate the upper limit of blood calcium for your age using this hypercalcemia calculator  (yellow icon mid page).

Study concludes….there is no such thing as “mild” hypercalcemia!

Patients diagnosed with primary hyperparathyroid disease are all too familiar with our doctors telling us that our calcium is not high enough to do anything about it. We are often told  that the appropriate course of action is to simply “wait and see” until our calcium is  over 11 and/or our symptoms progress. As a result, patients suffer needlessly from symptoms that significantly impact our quality of life. We are often ignored until our health deteriorates to the point of developing   kidney stones or irreversible damage is done to our bones. In severe cases, the disease can cause damage to the heart valves and increases the risk for heart attack. The hypothesis that “mild” hypercalcemia equates to mild hyperparathyroidism and thus the patients is not at great risk,  is common in the literature and in clinical practice, as experienced by patients like us, apparently despite a lack of evidence.

A recently published scholarly review entitled, Concentration of serum calcium is not correlated with symptoms or severity of primary hyperparathyroidism: An examination of 20,081 consecutive adults, shows conclusively that the concentration of serum calcium, whether between 10 and 11 mg/dL or higher than 11 mg/dL, is unrelated to number and type of symptoms and disease severity in primary hyperparathyroidism. In other words,  people with just “mildly high” calcium levels feel  just as bad and have just as many health issues as those with higher calcium levels! 

The graph below created from the data of 20,000 + patients from the Norman Parathyroid Center is included in the paper and was posted on the Parathyroid Disease Awareness Group: Norman Parathyroid Center’s Facebook page in April 2016.

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People with calcium levels that were just above normal had as many symptoms and complications from the disease as those with very high calcium levels.  – Dr. Deva Boone

What is extremely important for the health care community to recognize and fully embrace (and for patient advocates to shout from the rooftops) is that there is no evidence to continue to support a serum calcium threshold in the parathyroidectomy guidelines.

You can read and learn more by linking to the references below.

References:  

Parathyroid Disease Support and Awareness: Norman Parathyroid Center

Concentration of serum calcium is not correlated with symptoms or severity of primary hyperparathyroidism: An examination of 20,081 consecutive adults

Surgery January 2017 Volume 161, Issue 1, Pages 98–106 https://authors.elsevier.com/a/1UDPM90L~Y6h8

  • Societal paper for the American Association of Endocrine Surgery. Abstract presented at the American Association of Endocrine Surgery 37th annual meeting, April 12, 2016, Baltimore, MD.
  • Boone, MD, , Douglas Politz, MD, Jose Lopez, MD, Jamie Mitchell, MD, Kevin Parrack, MD, James Norman, MD – Norman Parathyroid Center, Tampa, FL.  Accepted 22 September 2016, Available online 15 November 2016

Para WHATS???

screen-shot-2016-09-07-at-8-17-10-pmWhat is primary hyperparathyroidism (pHPT)?

Hyperparathyroidism is the illness that results from too much parathyroid hormone. There are four parathyroid glands that are each the size of a grain of rice and are usually located behind the thyroid gland. These four glands regulate calcium in the body. Primary hyperparathyroidism results when one or more adenomas (non-cancerous tumors) form in one or more of the parathyroid glands and secrete too much parathyroid hormone (PTH), which disrupts calcium regulation, leading to hypercalcemia, or high calcium in the blood. Hypercalcemia has several bad consequences. As a result of calcium being leached from the bones due to high PTH, primary hyperparathyroid disease can be a root cause of osteoporosis.

How is primary hyperparathyroid disease diagnosed? 

Primary hyperparathyroidism is diagnosed through blood tests. These tests include serum calcium, PTH (parathyroid hormone), and vitamin D-25. Most patients present with:

High serum calcium (normal = 8.7 – 10.1 mg/dl)
High PTH (normal = 15 – 65 pg/ml)
Low vitamin D-25 (normal = 30 – 100 ng/ml).
*Note that normal lab ranges may vary from lab to lab.

According to the experts, persistent calcium levels 10.1 and above (in an adult) is almost always a parathyroid tumor. Approximately 20-25 percent of cases don’t present classically. Normohormonal primary hyperparathyroidism occurs when calcium is high, but PTH is still within the normal range. Normocalcemic primary hyperparathyroidism occurs when calcium is in the normal range, but PTH is elevated. Additional lab tests including ionized calcium and urine calcium may be helpful in making the diagnosis when the presentation is not classic.

Learn more about the function of your parathyroid glands and the classic presentation of the disease by listening to this podcast:

 

Learn more about the normohormonal and normocalcemic presentations by listening to this podcast: 

 

What are the symptoms? There are many. The mnemonic Stones, Bones, Moans, Groans, and Psychic Overtones is one way the medical community refers to symptoms of pHPT. These include, but are not limited to, bone and joint pain, osteopenia, osteoporosis, kidney stones, heart fluttering or palpitations, heart attack, hair loss, inability to sleep through the night, brain fog, gastrointestinal distress, GERD, anxiety and depression. Symptoms are often vague and erroneously attributed to various conditions such as menopause, osteoarthritis or psychiatric disorders; although a parathyroid adenoma later proves to be the root cause of the patients’ symptoms.

Are there any drugs that can treat this, instead of having surgery?
There are no drugs that can reverse the disease process and make the adenoma shrink or disappear. Surgical removal of the parathyroid adenoma is the only cure. It is our understanding that the drug Cinacalcet is used to treat those with secondary hyperparathyroidism, which is hypercalcemia that is secondary to kidney disease. It is also sometimes prescribed for those who are not eligible for surgery and/or who have had failed surgeries and cannot be cured. Additionally, the osteoporosis drugs (Bisphosphonates) cannot improve bone density when an adenoma is present.

Can I just “wait and see” whether my symptoms persist or worsen? 
Excess calcium in the blood stream can cause serious complications over a period of years. The calcium interferes with digestion and can lead to GERD and ulcer formation. The excess calcium can deposit in the kidneys as kidney stones and ultimately lead to kidney damage. Excess calcium in the blood can cause calcification in the blood vessels and ultimately heart disease and heart attack. Left untreated, calcium can be deposited all over the body and cause calcification of various organs. Depletion of calcium from the bones leads to osteoporosis and fractures.

What should you do if you suspect that you have primary hyperparathyroid disease? 

Become an informed patient: Request copies of your lab work. Understand that the normal ranges for calcium values vary slightly from lab to lab, but more importantly often do not take into consideration variations for a person’s age. Adults over age 30 generally feel best with calcium values in the 9’s with an upper limit of 10.1.

Research: Do not assume that your doctor will know a great deal about this disease, particularly if you present atypically as either normohormonal or normocalcemic.

Advocate: If doctors are dismissive of values you now understand are indicative of the disease, or your doctor proposes the ‘wait and see” model of care, be prepared to educate. There is no such thing as “mild” primary hyperparathyroid disease and it does not get better on its own. Surgery is the cure.

Self-refer if necessary: We all found we needed to self-refer to an expert surgeon. Many patients do not realize that this is indeed possible.

Pick your surgeon carefully: All endocrine surgeons are not created equal. Some surgeons only remove the parathyroid gland with the adenoma that is seen on imaging studies, such as Sestamibi scans or ultrasound scans, and do not look for other bad glands. Others will do exploratory surgery for several hours in the hope they can find the bad glands, as they are very difficult to locate. As a result, excessive scar tissue forms, making it far more difficult and sometimes impossible for a patient to have a successful second surgery if this becomes necessary. It is important to find an expert surgeon that has performed hundreds of parathyroidectomies. Ideally, they should know how to locate and assess the 4 glands in under an hour.


We are NOT medical professionals….we are patients turned advocates! Our mission is to raise awareness and advocate for IMPROVEMENT in diagnosis and standards for surgical treatment of Primary HyperPARAthyroid disease (pHPT). According to the medical community, surgery is the cure and in our cases, it was indeed with the right surgeons! The decision whether to have any type of surgery is a deeply personal one and as always, it is important to weigh the benefits against the risks and carefully select the surgeon.

10 signs of Parathyroid Disease

10 signs of Parathyroid Disease

 

Screen Shot 2016-09-01 at 3.27.13 PMIt is estimated that 1 in 100 people (1 in 50 women over the age of 50) have primary hyperparathyroid disease (pHPT) and the majority of them have no idea that they do. Most people are completely unaware that we have four PARAthyroid glands that are generally located right BEHIND the thyroid, a butterfly-shaped gland in the center of your neck, the master gland of metabolism. The parathyroid glands regulate calcium in the blood that should always remain in a very tight range that is normal. Normal ranges are age-dependent. A mature adult should never have a serum calcium value that exceeds 10.1.

If one or more of the parathyroid glands develops a non-cancerous adenoma the rogue gland produces too much parathyroid hormone (PTH) which then calls for calcium from the bones where calcium is stored. If calcium is not tightly regulated you are not going to feel well.

Given that the average patient goes undiagnosed for 8 + years, according to experts who ultimately perform surgeries to cure these patients, it is important to check your serum blood calcium levels.

If you are a mature adult and have calcium values that exceed 10.1 and suffer from any of the following conditions /symptoms, it is important to rule out whether a parathyroid tumor is the root cause:  

  1. Diagnosed with osteopenia or osteoporosis or experiencing fractures.
  1. Suffer from kidney stones, flank pain, frequent urination.
  1. Experience atrial fibrillation, heart palpitations or stroke
  1. Episodes of brain fog / confusion
  1. Mood issues such as mood swings, anxiety, panic attacks or depression.
  1. Gastrointestinal Issues – constipation, nausea, GERD, peptic ulcer, decreased appetite
  1. Bone pain, curvature of the spine, loss of height
  1. Gall Stones
  1. Low Vitamin D
  1. Calcification of and/or deposits of calcium in organs

If you think primary hyperparathyroid disease has perhaps been overlooked as a root cause of your problems/symptoms here are some things to do and be aware of:

  • Ask to have your blood calcium, parathyroid hormone levels and Vitamin D checked together. It is their relationship to one another at the time of testing that is important in order to make an accurate diagnosis.
  • Note that it is a hallmark of the disease to have calcium values fluctuate and they may fall into the normal range occasionally, even when a person is ill, therefore repeat testing is sometimes necessary for a proper evaluation.
  • Become familiar with the various presentations of primary hyperparathyroid disease – classic (high calcium, high parathyroid hormone levels and low vitamin D) normohormonal (high calcium and normal parathyroid hormone levels) or normocalcemic (normal calcium and high parathyroid hormone levels).

PODCAST!  LISTEN NOW!  Learn more by listening to this podcast about the Normohormonal and Normocalcemic Presentations of primary hyperparathyroid disease:

 

Be well!

The Parathyroid Peeps

3,2,1…the countdown begins! Meet the Parathyroid Peeps

3,2,1…the countdown begins! Meet the Parathyroid Peeps

This is the final post in a series of blogs entitled, “3,2,1 … The Countdown Begins” that we are sharing to introduce you to the speakers we’ve lined up for our 2nd Annual Parathyroid Peeps Retreat November 3-6, 2016 at Miraval Resort and Spa! We hope you will be able to join us for this amazing, all inclusive get-away in Tucson, Arizona. The Parathyroid Peeps Retreat cocktail party, sessions and giveaways are a bonus to the programs and spa services offered at the resort and are available only to those who register using our discount code.  Our special group rate was guaranteed through August 31. Rooms can now only be reserved under the special group rate on an “as available” basis. If you have been procrastinating, don’t wait a moment longer!  

Learn more about the retreat and how to register here.

Parathyroid Peeps Joyce, Sophie and BarbbaraWe are 3 San Francisco Bay Area women who are sharing our personal journeys of overcoming the debilitating symptoms of primary hyperparathyroid disease through surgical removal of our non-cancerous adenoma(s). Our purpose is to raise awareness and advocate for improvement in diagnosis and standards for surgical treatment of primary hyperparathyroid disease.

 

Our peep retreat at Miraval Resort and Spa provides a haven for those who are interested in learning more about parathyroid disease or seeking a diagnosis, those being told to “watch and wait”, those who have persistent disease, and those who are cured. The curious, supporters, patients as well as medical and mental healthcare professionals are encouraged to take advantage of our group rate and hosted retreat activities.

We’ve lined up a full retreat schedule with an  amazing group of speakers .

We will be presenting at the following sessions:

  • Parathyroid 101 with Dr. Deva Boone
  • Parathyroid Peeps Advocacy Workshop
  • Advocacy Writing Workshop

HOT OFF THE PRESS!  View the entire Parathyroid Peep Retreat Schedule here. 

As patients who have been affected by this disease, we are working to create change so that….

  1. Patients as well as medical and mental healthcare professionals understand the symptoms and biochemical presentations of the disease so that diagnosis is timely.
  2. Medical professionals understand that the “wait and see” model of care is inadequate and leads to more serious health issues. Hyperparthyroid disease is a silent killer.
  3. Patients understand that currently surgical techniques vary dramatically. Change is needed to ensure the most advanced techniques are the standard of care.

Barbara, Joyce and Sophie look forward to meeting you at Miraval! 

Learn more about each of the Parathyroid Peeps here.

 

 

3,2,1…the countdown begins! Meet Expert Parathyroid Surgeon, Dr. Deva Boone

This is the fourth in a series of blogs entitled, “3,2,1 … The Countdown Begins” that we are sharing to introduce you to the speakers we’ve lined up for our 2nd Annual Parathyroid Peeps Retreat November 3-6, 2016 at Miraval Resort and Spa! We hope you will be able to join us for this amazing, all inclusive get-away in Tucson, Arizona. The Parathyroid Peeps Retreat cocktail party, sessions and giveaways are a bonus to the programs and spa services offered at the resort and are available only to those who register using our discount code. Our special group rate is guaranteed through August 31.

To ensure your space, please register ASAP. Learn more about the retreat and how to register here.

MEET EXPERT PARATHYROID SURGEON DR. DEVA BOONE –

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Dr. Deva Boone is one of seven expert surgeons at the Norman Parathyroid Center in Tampa, Florida. She is an outstanding teacher and educator who gives talks regularly at national meetings and has become a recognized expert in parathyroid disease world-wide.We are so pleased and honored to have Dr. Boone join us us at the 2nd Annual Parathyroid Peeps Retreat as our featured guest. She will be offering the following sessions:

  • Parathyroid 101 with the Parathyroid Peeps
  • Calcium Pro App
  • In the Dr.’s Office – How to Advocate For Your Own Health

And, as an added bonus,  Dr. Boone will be available both Friday and Saturday afternoons for scheduled one-on-one “Doc Chats” with registered participants! 

Raised in New Jersey Dr. Boone spent most of her life in New York City. After obtaining her medical degree from Cornell University, she completed general surgery residency at St. Luke’s Roosevelt Hospital Center in New York City. While there, she received several awards for research, and during her final year received the highest award for outstanding contributions to surgical education and research.

After residency Dr. Boone received additional fellowship training in endocrine surgery (thyroid and parathyroid surgery) at NorthShore University in Chicago. She enjoys surgical missions and has provided surgical care to patients in Nigeria, Myanmar, and the Dominican Republic. Jim Norman, the Founder of the Norman Parathyroid Center, remarks,  “Deva is exceptionally smart as well as gifted in the operating room–two traits that are extremely desirable in a surgeon.” When we visited this past July we noted that patients love her warm and caring disposition and in on-line support groups she has been referred to many times as  “a gem”. In addition to her great operative skills, she helps oversee research efforts at the Norman Parathyroid Center.

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Dr. Boone looks forward to meeting you at Miraval! 

 

3,2,1… the countdown begins! Meet CEO & Founder of Urban Sitter, Lynn Perkins

This is the third in a series of blogs entitled, “3,2,1 … The Countdown Begins” that we are sharing to introduce you to the speakers we’ve lined up for our 2nd Annual Parathyroid Peeps Retreat November 3-6, 2016 at Miraval Resort and Spa! We hope you will be able to join us for this amazing, all inclusive get-away in Tucson, Arizona. The Parathyroid Peeps Retreat cocktail party, sessions and giveaways are a bonus to the programs and spa services offered at the resort and are available only to those who register using our discount code. Our special group rate is guaranteed through August 31.

To ensure your space, please register ASAP. Learn more about the retreat and how to register here.

CEO & FOUNDER OF URBAN SITTER – LYNN PERKINS

Often we hear our followers say that they have had to “push the pause button” on their 9-5 jobs, in order to manage their illnesses. Likewise we have heard stories of people “reinventing” themselves by starting their own businesses that affords them a level of flexibility they didn’t have perviously, so that they could juggle Dr. appointments, take care of themselves and their families yet still earn money to pay the bills.  How does one parlay a passion into a business venture or re-enter the workforce after an extended illness?

Lynn is offering a session that addresses the practical matter of earning a living while managing a disease – your own or a family members. Her session is entitled, “Entrepreneurship – How to parlay your passion into a business venture that supports career-life balance” and in many cases, this is to manage an illness, either your own or a family members. Lynn will share valuable information on how to start a small business as well as tips on how to help ensure a smooth transition back to work after an extended illness or other hiatus.

Lynn photo (2)Lynn Perkins is CEO & Founder of UrbanSitter, an online and mobile service that is reinventing the way parents find trusted childcare. In 2011 Lynn founded UrbanSitter and launched it into a national marketplace in less than a year. Since then, more than 100,000 sitters have joined UrbanSitter in order to find flexible work to help offset school tuition, afford living expenses, and earn supplemental income.

In the past year, UrbanSitter has doubled both its membership and bookings and extended its service to more than 60 cities; launched a new mobile product; announced integration with LinkedIn; and developed multiple corporate partnerships with companies like AirBnB, OpenTable and Lyft.

An Internet startup veteran, UrbanSitter is Lynn’s third startup experience. Previously, she served as founder and CEO of Xuny.com and VP of Business Development at Bridgepath.com. Lynn enjoys sharing her experience and learnings from growing a business from scratch. She also likes to speak about the new flexible work economy which UrbanSitter is helping to both power and support.

Lynn is a graduate of Stanford University. She enjoys traveling and spending time outdoors with her husband and three rambunctious sons.

Lynn looks forward to meeting you at Miraval!

3,2,1 …the countdown begins! Meet Psychologist Dr. Jean McPhee

3,2,1 …the countdown begins! Meet Psychologist Dr. Jean McPhee

This is the second in  a series of blogs entitled, “3,2,1 … The Countdown Begins” that we will be sharing to introduce you to the various speakers we’ve lined up for our 2nd Annual Parathyroid Peeps Retreat November 3-6, 2016 at Miraval Resort and Spa! We hope you will be able to join us for this amazing, all inclusive get-away in Tucson, Arizona. The Parathyroid Peeps Retreat cocktail party, sessions and giveaways are a bonus to the programs and spa services offered at the resort and are available only to those who register using our discount code. Our special group rate is guaranteed through August 31.

To ensure your space, please register ASAP. Learn more about the retreat and how to register here.

Meet Dr. Jean McPhee The high calcium that patients with primary hyperparathyroid disease suffer from can result in anxiety, heart palpitations, confusion, and thus mental suffering  causing much stress. Dr. McPhee will lead us in a workshop entitled, “Managing Stress Related to Poor Health/ Disease” and will offer helpful tools and coping strategies for those who are waiting for a diagnosis, surgical treatment or for those with persistent disease. Additionally, she will be leading us in a closing  meditation/ mindfulness session that is exclusive to our retreat participants.

jean mcphee photo Dr. Jean McPhee is an experienced family psychologist and consultant in La Jolla, CA. In preparation for her “mid-life” PhD in clinical psychology, Dr. McPhee’s professional background included education and training at Stanford University and years of working in education. After establishing a successful private practice, Dr. McPhee became increasingly concerned about the noticeable, harmful effects of stress on her clients. Searching for evidence-based solutions, Dr. McPhee trained with relaxation expert Herbert Benson, MD at the Harvard University Mind Body Institute.

In 2005, Dr. McPhee founded SMART Performance® with one goal in mind: to provide quick, easy and effective Stress Management and Relaxation Training to anyone who wanted to feel better and perform at their best. Working collaboratively with physicians and other experts, she provides services to individuals, groups and corporations.

Professional Credentials and Affiliations include:

American Psychological Association
State of California – Lifetime Teaching Credential
State of California – Licensed Psychologist (PSY 15325)
Stanford University Alumni Association
Harvard Medical School Postgraduate Association

Jean looks forward to meeting you at Miraval!