Mourning lost time…

Mourning lost time…

Recently a follower posed a very interesting question that many patients cured of primary hyperparathyroid disease may not necessarily articulate but perhaps struggle with after being cured.
Screen Shot 2017-09-18 at 9.08.54 PM                                                                                                              “How can I move on and be happy that the problem is fixed and not focus on the past? I just can’t let the past go. “
No doubt there are a  broad range of emotions – anger, disbelief and/or fear, to name a few,  that we may experience as we recover if we have gone undiagnosed for many years and/or have experienced a previous failed surgery.
                                                                                                                  First, it is important to understand that it is normal to experience a full range of emotions. It can be very unsettling to come to the realization that the health care system we rely upon and in which we may have had complete faith, failed us on many levels.
                                                                                                                                                                     It can also be difficult to wrap ones head around the fact that far too many healthcare professionals do not know enough about this disease to make a swift diagnosis. In many cases, they do not properly rule out primary hyperparathyroid when their patients present with high calcium and/or blatant symptoms and often do not think to check parathyroid hormone levels early on.
                                                                                                                                                              Here are some thoughts we’ve had that have been helpful to us and have enabled us to let go of the past…
                                                                                                                                                                    1) Focus on the important lessons learned that may one day serve us or a family member. What are these important lessons?  That we cannot blindly trust our Doctors!  They are only human and are doing the best they can but at times their knowledge (and time they have to spend with us) is limited.  It is important to always do our own research and be our own health advocate. With the information that is available on the internet and a bit of discernment it is possible to make informed decisions.
                                                                                                                                                                       For example, when my husband needed a hip replacement this past year, from experience we knew we needed to research the various surgical options available. Then we knew we needed to research the surgeons who perform the specific technique and found statistics on the number of surgeries performed and outcomes. By educating ourselves we felt confident that the surgeon we selected was the right one for the type of surgery my husband elected to have.
                                                                                                                                                                   2) Realize that you are in good company if you went undiagnosed for many years. It is estimated by experts who have performed thousands of surgeries that the average patient goes undiagnosed for 8+ years. So, sadly,  our circumstances are not unique. We have yet to meet anyone who hasn’t had this disease for many years prior to a diagnosis and surgery!
                                                                                                                                                                   3) Think about the fact that if the diagnosis were made earlier (in many instances for patients this is perhaps 8 -10 years) the surgery might have been more barbaric and/or the outcome might have been worse. Surgeons continue to gain critical experience with each surgery performed. Progress is being made and techniques continue to improve over time. In my case, if I had gotten diagnosed at onset, I believe I would have had a very different surgical experience.  The internet had not yet exploded and the information I needed to make an informed decision was not readily available. Given my adenoma was attached to my vocal cord I could have easily had a very traumatic surgical experience and might have even lost my voice. Yet in 2011 it was removed by highly experienced surgeons without incident.
                                                                                                                                                                    4) If you are one who has had a failed surgery and are then subsequently cured by a second surgery, celebrate the fact that you are one of the fortunate ones who has been cured! Sometimes the scar tissue is so extensive from a previous surgery due to hours of surgical “exploration” trying to find the four glands, that the tissue becomes like cement and it becomes impossible to remove the embedded adenoma (s).
                                                                                                                                                                   5) Reflect on the sage advice that “time heals all wounds”. Early in recovery patients in Facebook support groups often report experiencing mood swings as the body adjusts to its new normal. Patients who have gone undiagnosed for many years frequently share that, more often than not,  it does take awhile for their bodies to fully heal while others experience more immediate improvement. Each patient is unique. Be kind to yourself and try to be patient, as difficult as that can be. It is OK to feel angry. I remember crying when I woke up from surgery and the first words I spoke to the attending nurse at my bedside was,  “I am so angry with my doctors!”. I was mourning lost time.
                                                                                                                                                                    6) Take action to educate and advocate. While you cannot go back in time to change your own set of circumstances, each of us is in a unique position to help raise awareness and advocate for improvement in diagnosis and standards for surgical treatment so that hopefully someone else will not have to suffer.
                                                                                                                                                                    7) Look at the process as a journey rather than a means to an end. There is no question that living with high blood calcium is bad. We felt blessed that we avoided the deadly consequence of living with high calcium. This does not however, mean that high calcium hasn’t wreaked havoc on our body! Anecdotally it seems that it isn’t all that unusual for there to be an unraveling process with further work to do to reap the full benefits of surgery. Perhaps there are thyroid issues that are discovered which need to be sorted out, work required to improve bone deterioration, a few more kidney stones still to pass and/or dietary changes to be made that can significantly improve health. Read about my own discoveries here. In other words, find delight in the opportunity to become the healthiest version of yourself.
                                                                                                                                                                 We hope these tips are useful in some way. What has helped you overcome feelings of anger, fear, frustration and/or disbelief and has allowed you to let go of the past and disappointment of lost time? We would love to hear from you.

The case of Charles Martell – How far have we come?

Captain Charles Martell was the first recorded patient in North America to be diagnosed with what was considered the rare condition of hyperparathyroidism. The year was 1926.

In 1918, at 22 years of age and over six feet tall,  Charles Martell joined the Merchant Marines. In 1926, several years later, standing before Dr. Eugene DuBois, at Bellevue Hospital, New York City, he measured seven inches shorter. His legs appeared deformed and Charles reported a history of multiple fractures and disseminating pain.  Dr. DuBois referred Charles to Ward 4, Massachusetts General Hospital, Boston, a center founded by James Howard Means to research obscure medical conditions, where an honorary plaque celebrating the ethos of the new ward declared:

Patients are the primary knowledge keepers of their conditions and that they should be seen as indispensable, equal collaborators in pursuing the cause of medical research  ” for their own benefit and that of others”.

Learn more about Charles Martell in this interesting,  peer reviewed article written by Stephen Casper PhD BSc Department of Humanities and Social Sciences, Clarkson University, Potsdam, NY, through the link below. 

The Case of  Charles Martell and Ward 4 – 

So just how far have we come? Sadly, much of the language used to describe Charles’ early experiences sounds eerily similar to what patients’ experience today…. 

“He was investigated for years”.

“He underwent exploratory surgeries”.

” … it was a rare medical condition”. 

“The onset of illness was 1919. By 1923 (4 years) it had progressed to such a degree that he was forced to abandon his career”

“Nonetheless it was not until 1926 ( 7 years) that he would meet a physician who named his suffering.”

While much has been learned about hyperparathyroid disease over the last nine decades there is still much work to be done!

There are still strikingly different levels of understanding among medical professionals about this disease that isn’t so “rare”. As many physicians still seem to believe that it is, they often do not consider primary hyperparathyroidism as the root cause of patients’ symptoms (ie. brain fog, osteoporosis or kidney stones, to name a few).  Experts, on the other hand,  estimate that 1 in 50 women over the age of 50 have primary hyperparathyroid disease. (i.e., 2 % of this large population.)

Exploratory surgeries are still commonly performed, even though we know that there are better ways to go about surgically caring for patients.

Patients still lose their jobs or abandon their careers.

It is estimated that patients go undiagnosed on average, 8 years – no better track record than poor Charles.

Why?

1) Most people have never heard of their parathyroid glands nor are they aware of their critical function of regulating calcium in our bodies.

2) Although patients are treated for many of the debilitating symptoms of hyperparathyroidism for years, the root cause goes undiagnosed.

3) Patients, and too often medical professionals, are not familiar with ALL of the debilitating symptoms of the disease which can delay diagnosis.

4) Within the medical community, there is a lack of understanding as to the various biochemical presentations of hyperparathyroidism. Medical professional also may confuse whether hyperparathyroidism is Primary – resulting from one or more noncancerous adenomas, Secondary to another medical condition or Familial (FHH) /hyperplasia. Note: The majority of patients whose calcium is high have Primary hyperparathyroidism, which can be surgically cured.

5) There is no consistent standard for what the normal, age-dependent range of serum calcium should be. Experts concur that adults age 30+ generally have calcium values in the mid 9’s and hyperparathyroid disease should be suspected if values are 10.1 or above.

Read more about our Action Plan. 

Become educated! Ask smart questions and help create change!

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Me estoy redescubriendo!

Me estoy redescubriendo!

3.-one week after

Conozcan a Yvette Serrano Camou

Hola soy de Mexicali, Baja California. En Pasteleria Ochoa hago pasteles para muchas novias. Siempre soñé con hacer los pasteles para mis hijos cuando ellos se casarán. Hace dos años se casaron dos de mis tres hijos. No les pude hacer su pastel y me la pasé sentada durante las dos bodas porque me dolía el solo hecho de caminar. Estoy muy agradecida que por fin tuve un buen diagnóstico y encontré un excelente cirujano.

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Por más de 5 años estuve enferma.

De ser una persona tan optimista, activa y vaga, no quería salir de mi casa.

Me habían operado de la rodilla, pero el dolor tan intenso en el hueso no me dejaba caminar, ni manejar. Tuve que usar silla de ruedas.

Estaba en un estado de depresión, sin saberlo. Me di cuenta después de la operación porque me sentí contenta otra vez. Notaba que me enojaba fácilmente por cualquier circunstancia y no lo podía evitar. Me volví una persona muy distraída.

Tenía la piel muy seca, fui con el dermatólogo y me dio una pomada y receto vitamina B , que no me sirvió.

Se me caía mucho el cabello.

En el 2014, empecé con dolor de riñón, no tenía piedras. Fui con el nefrólogo, y me dijo que estaba bien.

En el verano del 2016, me diagnosticaron con un alto grado de osteopenia. Mi T- Score: AP Columna -1.3. Fémur derecho -2.2. El especialista en osteoporosis me receto Prolia (denosumab) un tratamiento para osteoporosis por 6 meses.

Fue cuando decidí ir con un endocrinólogo a pedir una segunda opinión. Fui con el Dr. Alberto Solano en Guadalajara, al ver que mi nivel de calcio en la sangre, por los últimos 5 años era de 10, 10.2 y 10.3, me mando hacer el estudio PTH, para saber el nivel de la hormona paratiroidea. Los resultados del examen PTH mostraron que tenía 184 pg/ml., cuando lo normal es entre 10 y 69. El diagnóstico fue hiperparatiroidismo, me tenían que operar para quitarme el tumor.

El Dr. Solano me recomendó que buscara un cirujano que tuviera la experiencia en operar la glándula paratiroidea. Me recomendó que buscara a un cirujano que fuera especialista en operar paratiroides y le preguntara que tan seguido las operaba.

Encontré a Norman Parathyroid Center en Tampa, Florida. Me operaron en diciembre 2016, un mes después de saber el diagnostico.

Llegué temprano al hospital y como a las 2 horas entre al quirófano. La operación duro como media hora. Estuve 2 horas en recuperación. Salí del hospital y me fui al hotel a comer nieve. Mi cuello estaba inflamado, como si tuviera una pelota de golf. No tenía mayor molestia, ya que podía hablar perfectamente y comer.

Esa misma noche estaba cenando en el restaurant. Me quede un día más en Tampa. Al día siguiente me fui de turista.

2 - day after surgeryDespués de la operación sentí que ese dolor tan intenso en la rodilla que había tenido por varios años, que no me dejaba caminar, se me quito. Al paso del tiempo los otros síntomas han ido desapareciendo. Ahora es cuando me doy cuenta de lo mal que estaba.

Una semana después de la operación me empecé a untar aceite de vitamina E en la cicatriz y ya casi ni se nota.

Continúo tomando Citracal +D3 cada 4 horas. En abril 2017, cuatro meses después, me volví a hacer los exámenes. Mi nivel de Calcio disminuyo a 9.2 mg/dl. Al hacerme la densitometría también la osteopenia disminuyo notablemente con mi T-Score : AP Columna -1.0, y Fémur derecho -2.1.

Recobre mi confianza, seguridad, alegría y libertad!!!!!!

4- two weeks after surgery blogger foto

 

 

 

Recovered life!

Recovered life!

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Meet Yvette Serrano –  I’m Yvette from Mexicali, Baja California, Mexico. At Pasteleria Ochoa,   I make wedding cakes for lots of brides. I always dreamt about baking my children their own wedding cakes. Two years ago, my eldest son and then my only daughter got married. Their weddings were both beautiful! However, I  wasn’t able to make a  wedding cake for either of them and there was no dancing for me while suffering from primary hyperparathyroid disease.  I am very lucky that I was finally diagnosed correctly and had an excellent surgeon.

 


It all started about five years ago. I changed from being a very optimistic, active, outgoing person, to one that didn’t want to leave the house.

I had knee surgery, but the pain was so intense, I could not walk, nor could I drive. I had to use a wheelchair. My orthopedist couldn’t find anything wrong. It wasn’t my knee that hurt however, it was my bone that hurt.

I started having mood changes. I got angry very easily for any reason and I couldn’t avoid it. I also became very absent-mined. I was depressed without me even noticing it.  (I only realized it after the operation, I felt happy.)

My skin became very dry. The dermatologist prescribed vitamin B, which did not work.

I had hair loss.

In 2014, I had kidney pain, but did not have kidney stones. The specialist couldn’t find anything wrong.

In 2016, I was diagnosed with osteopenia in the femur and the spine. My T-Score: AP Spine -1.3, Right Femur -2.2. The specialist suggested Prolia (denosumab) treatment for 6 months.

I decided then to see an endocrinologist to get a second opinion and scheduled an appointment with Dr. Alberto Solano in Guadalajara, Mexico. After seeing that for the past five years my blood calcium level was 10, 10.2, and 10.3, he ordered PTH tests to check parathyroid hormone levels. My result for the PTH test was that I had 184 pg/ml, when the normal values are between 10 and 69. The diagnosis was I had hyperparathyroidism. I had to have surgery to remove the parathyroid tumor.

Doctor Solano recommended I find a surgeon who had experience operating on parathyroid glands and suggested that I ask specific questions; for example: Do you specialize and perform only parathyroidectomies? How often do you perform them?

After research I found the Norman Parathyroid Center in Tampa, Florida, who specializes in parathyroid glands. I was diagnosed in November 2016 and a month later in December had arranged to have surgery there.

I arrived early to the hospital and waited about 2 hours to be sent to the operating room. The operation lasted about 30 minutes or less. I stayed 2 hours in the recovery room and then returned to the hotel to eat ice cream. My throat was swollen as if I had a golf ball, but I could speak and eat perfectly. I had no pain.

1 - post surgery1

2 - day after surgery

That same night I was eating at a restaurant. I stayed one more night at the hotel, but it was not necessary, I felt great. Went sightseeing the next day.

After the parathyroid operation, the excruciating pain I had in my knee was gone and the other symptoms went away too.

A week after the operation I applied vitamin E oil on the scar, all the lumps disappeared. You can barely see the scar.

I continued taking Citracal +D3 every 4 hours. 4 months later, in April 2017, I had labs done for a checkup, and my results were the following: Calcium 9.2 mg/dL, and PTH 72.20 pg/mL, and my T-Score: AP Spine -1.0, Right Femur -2.1 (which means I only have osteopenia in the femur and not in the spine anymore).

I have recovered my confidence, security, happiness, and freedom!!!!!!4- two weeks after surgery blogger foto

Editors note: We are thrilled to be able to share Yvette’s story again in the near future, but this time in Spanish. We have always wanted to be able to share posts in different languages and we are honored to be able to collaborate with Yvette to make hers our first!

Yvette invites you to contact her to ask any questions you may have in Spanish or English at  yvetteochoa2@hotmail.com. or through Facebook at Yvette Serrano Camou 

A Year In The Life….

A Year In The Life….

 Meet GSandi Putnamuest Blogger Sandi Putnam – Sandi was born and raised in Michigan, became a medical technologist in 1960 and worked at that for 35 years. She is married with a daughter and a grandson in Texas and lives with her husband in Tucson, Arizona. During her husband’s 25 year career with Eastman Kodak in professional markets, the family relocated around the USA which provided the couple and their daughter, many enriching experiences. In a twenty year time frame that she was able to do so, Sandi kept horses, enjoyed horseback riding and served as a mounted patrol volunteer in a nearby national park for a number of years. She continues to enjoy swimming, walking, yoga, Curves  training, sewing and gardening as well as managing a household and an active life of retirement with her husband, Doug.

On April 4, 2017, four Tucson women who had been to Tampa in a ten month time frame went out for lunch to celebrate my one year surgery anniversary. I was the first of us four to have surgery at Norman Parathyroid Center exactly one year to the day. Through my friendships with two of them for a number of years, I was able to help affirm their decisions to choose NPC. Three of us are retired medical professionals and the last, Betty  who was tenaciously looking for answers to her health problems.

Sandi and Betty

Sandi with Betty at one year “anniversary” celebration.

This fourth person came on board when she heard about the Parathyroid Peeps meet up in Tucson in November 2016, a courtesy event hosted by Barbara, Joyce and Sophie at their hotel, which preceded their second annual workshop at Miraval with Dr. Deva Boone, who arrived a few days later. Later that same week, I was privileged to be on the program with Dr Boone as a presenter from a patient’s perspective.

Here is our overview. All four of us had surgery in Tampa between April 2016 and February 2017. Our cumulative years of going undiagnosed are about 50 years. None of our primary doctors or specialists were as convinced as we were of having pHPT, after each of us independently, had spent a good deal of time on the NPC web site. For the most part, doctors around the world do not understand that anyone over age 30 should not have a calcium over 10.0. This is because of their reliance on our laboratories which report a reference range that goes into the mid 10’s, so we were all lumped together and considered ‘normal.’ Even those of us whose calcium levels were in the 11’s,  apparently didn’t raise any red flags.

One woman was refused a referral to an endocrinologist for a workup, so like the rest of us, she downloaded the Calcium Pro app to help move her forward. We are only a few of the countless who are self-diagnosed and ultimately confirmed through consults with NPC. Only one of us had the classic elevated serum calcium and elevated PTH, the others had only elevated calcium. This made it all the more difficult to prove that we needed surgery. Between us, we had ALL of the symptoms on the NPC chart. We all had osteoporosis for which bone drugs were indicated, at least to our doctors. Between us, we believe we interacted with all 7 of the NPC surgeons on our cases. Our experiences with the rest of the highly professional and skilled staff at NPC were exceptional and courteous at every step. Each one of us had a procedure that lasted 30 minutes or less with incisions no longer than 1.5 inches. We were back at our hotels within a few hours of arriving at the center for our operations. Today, our scars are all remarkably minimal and continue to fade away.

Adenomas

A photo of each of our “culprits”…                non-cancerous parathyroid adenomas producing too much PTH!

Early on, each gave consideration to having procedures done locally, but independently we earnestly believed that the most successful outcomes would be at the hands of the surgical team at NPC. Our convictions rang true, as each one, in turn, returned home.  No facility does as many surgeries on a daily basis.  At NPC we had minimally invasive radio-guided surgeries. However, the probe was not used to locate the adenoma or glands like a “metal detector”.   Instead, the probe was used only to measure parathyroid hormone output of our adenomas and the biopsies of our remaining healthy parathyroid glands (generally three) to help ensure that we were cured.  It is not clear to us whether surgeons elsewhere locate and check PTH output of all adenomas and remaining health glands using the radio guided probe in this way.  Nor did these experienced surgeons have to “explore”.  Instead they use their expert understanding of the neck’s anatomy to locate all four glands in short order.

Had we chosen other surgeons and facilities, we were almost certain to face a longer time in surgery, which could also mean a longer recovery.  Likewise, it might have meant a less certain outcome because frequently, if surgeons are not as experienced, all four parathyroid glands are not checked. Nobody complained about pain afterward. Most of us had a meal shortly after being back at our hotels.

It is important to note that the post-surgery calcium protocol differs by quite a bit among other practices. Two of us were pretty much the text book NPC post-surgery calcium supplement intake, but two of us needed LOTS of extra calcium that was recommended by each one’s surgeon initially and subsequently coached along by the diligent and easily accessible staff in Tampa. These needs, early on, were determined by our surgeons before we took our first calcium pill. None of us ended up in the ER with a calcium IV due to the sudden drop to normal of our serum levels. Anyone who felt she needed other questions answered, found that being in touch personally with one of the nurses or her lead surgeon was easy.

While each of our stories is somewhat unique and each of our travel and lodging experiences vary somewhat, our procedures were all done in an expeditious manner, our recoveries were well underway in short order and we are collectively rid of our pre surgery symptoms and feel fantastic. Everyone’s labs in the following months are back to normal. Meanwhile, each of us knows at least one or two other people with this disease, whose doctors are not doing proper workup, diagnoses, or least of all, recommending surgery. They are victims of the ‘wait and see’ treatment plan. Each of us has become an advocate within our own circle of friends.

We are looking forward to having Parathyroid Peep Sophie Freedman, as a brand new resident of Arizona. This will afford us a unique opportunity to schedule regular meet ups in the state of Arizona, so that we can share our stories and take an active part in ongoing awareness and support of parathyroid disease.

 

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!