Hypoparathyroidism Newsletter (The Voice of the Hypoparathyroidism Association, Inc.) 2835 Salmon Idaho Falls, Idaho 83406 USA A Tax-exempt Non-Profit Corporation: 82-0505424 Volume 10 Number 4 1490 Members of Record December 2003 E-Mail: [email protected] Web Site: Phone Number: [email protected] http://www.hypoparathyroidism.org 1-208-524-3857 (USA) "The Hypoparathyroidism Association Inc. should NOT be used as a substitute for professional medical and psychological treatment. Any suggestions we may offer in our quarterly newsletter, on our web site, or in any e-mail correspondence should be considered as 'suggestions' only. "Any changes in your current medical treatment you may want to consider should be discussed with your personal physician and should NOT be undertaken without his/her concurrence and support to ensure proper medical treatment and follow-up. "Our suggestions and comments are based on our collective experience, both personal and collective. While the suggestions and comments we have offered have been successful for many individuals, we do not mean to imply they will be successful for every individual and under every circumstance. "Proper medical treatment is intended to be a personal matter between the patient and his/her own physician. Any suggestions or comments offered are intended to help the patients and their physician(s) determine the best course of action." Just a Thought
I believe we have to be the educator to all people when it comes to this disease,
from our children and spouses, to our parents and friends, and to the medical profession as well. They will never know if we do not speak up and say something. So many times I have found that Doctor’s just do not know about how this disease affects us. Yes they did have training in school, and yes they even touched on the subject, but, more times than not, they have never dealt with a patient with Hypoparathyroidism or any of the other types of Hypoparathyroidism. Maybe that is something we should all ask when we are to be treated, "Have you ever known or worked with a person with Hypoparathyroidism, and would you be willing to do so?" That might give them a better opportunity to see we are not crazy, but very rare humans in a complicated society.
One of the things I have been amazed is how specific issues seem to rise to the surface. Usually when I begin to “build” the newsletter all I have to work with is a compilation of e-mail messages and other material gathered during the previous three months. Somehow an issue of importance always seems to rise to the surface, an issue that affects each and every one of us. I remember years ago, probably close to 48 years now, when the doctors first told my parents there was nothing wrong with me. They were wrong! One of the things I feel many, if not most of us, have to deal with is various mental problems connected with Hypoparathyroidism. Not only does it effect how we have to deal with ourselves, it effects how others look at us. This includes physicians who have been called upon to treat this weird illness, as well as those we have to work with and live around in our daily lives. Ken Anderson, one of our regular columnists has addressed this very issue in a way we can all relate to. I hope you appreciate what he has to say. Over the Edge and Lost in the Woods “He must be off his medication!” These words yelled about me by a neighbor sliced deeply into what little sense still remained of being fairly and compassionately viewed regarding my chronic illnesses. “He must be off his medication!” This statement seems to allude to some kind of mental disorder, of being unbalanced mentally, emotionally, and behaviorally. “He must be off his medication!” A taunting, jeering expression of ridicule and contempt, of being shoved aside physically and having any thoughts and feelings discounted and invalidated. “He must be off his medication!” A neighbor taking the vague knowledge of my chronic illnesses - an insight that is assuredly incomplete and inaccurate - and turning it into something to be ashamed of and somehow unworthy to be among normal people, defined as those who experience health deterioration and troubling ailments in their later years of life. Just as normal people are supposed to do. But I am not normal based upon this definition that is occasionally forced upon me. Even though I swallow different medications throughout the day, those odd tingling, spasming sensations and aching joints and flustering minutes of confusion that extend beyond acceptable momentary lapses are never very far away like some sort of poltergeist, goblin, or demon. We had been arguing. He had figuratively pushed and kept pushing; and I was tired of being pushed. I held my ground, perhaps more of a tenuous grip on the small claim of dignity that remained, perhaps a stubborn refusal to budge one inch further. “He must be off his medication!” I had called him on pushing me - us, our family - around, of being rude and brazen regarding a small issue perhaps but a legitimate one nonetheless. His response was that my mental state was clearly deteriorating (“over the edge” and “way out there”), an opinion that he continually repeated, and with probably nothing to substantiate it other than I am different. Different in my unstable work history and in the falling way short of the earnings potential that my one-dimensional resume would suggest. Different in the hair I’ve recently let grow into a goatee and longer on my head than a middle-aged, middle-class, suburban man should. Combined with the scars on my neck and head, my appearance screams unstable behavior like that expected from the homeless and lost, which is where I almost feel, is really my designated place. “He must be off his medication!” This was a taunting explanation of my audacity at maturely challenging his right to what wasn’t his but mine, and at immaturely challenging him to physically back up his disdainful words, not so much about my mental state but about my “weird kids” and “weird family,” weird because I have this rare, hard-to-describe illness. Factual, legitimate, medically demonstrable, but still not acceptable for a guy like me, for a person like any of us, to have. Not now, not in this time and socially-striving place, not in this world where winning is truly the goal and survival is for those already out of the race. I have an illness, so therefore to my neighbor I seem to have relinquished certain human rights and claims to respect. And, by default, so have my children and wife. I have heard hurtful words before due to my illness; repeatedly laughed at whenever I left the conference room (and they thought I couldn’t hear) because I had been confused one time when giving driving directions, jabbed at because I lacked the energy and drive that people of my experience are supposed to exude, talked to as if I am a moron or malcontent because my skill levels and intellect seem to climb and dip like a defective sports car on a hilly highway. A car which sometimes runs out of gas no matter how closely I watch the gauge or try to fill the tank. But my kids aren’t cars or lifeless machines, and I am not unfeeling or unemotional when they are criticized for whatever I am or however one chooses to define me. “He must be off his medication!” He was correct; I have stopped taking my Magnesium. The bottle of Mag-Ox which I have consumed each month (actually every three-and-a-half weeks) for over 20 years and is not covered by insurance is a cost I’ve chosen not to pay, not with money as tight as it has become. How did he know? He didn’t, of course. He was, in effect, saying I was unstable and crazy. Then how did he know I take antidepressants and tranquilizers? He doesn’t, of course. And I take them not because of a depression diagnosis but to assist - desperately help - fire the synapses in the brain into doing the job they used to do well, until the years of lowered calcium seemed to dampen the ignition into a state of frequent misfiring. That was the same reason for temporarily taking Ritalin even though Attention Deficit Disorder was not an issue. (Science still includes trial-and-error.) The tranquilizers are for bedtime to thwart the sleep-depriving leg cramps and the spasms that leave my arms like two dead logs. The neighbor doesn’t know any of this, and doesn’t care. He only knows that I am not like him, and therefore not “normal,” and somehow, neither are my kids. Well, anyhow, at this time of year with thoughts of thankfulness and peace and the mystery of the richness of life, I can barely manage to focus on what holds for me the purest of pleasure and joy, that of being a father, moments for which I will always be grateful. Peace? The best I can manage is a piece of pumpkin pie or a piece of ham or the recognition in the mirror of a piece of what used to be me. And the mystery of life has been crushed by the mystery of long-term Hypoparathyroidism. Why did the surgeon refuse to listen to my pre-op concerns, why do people not understand and not seem to want to understand, why will doctors not help, why was I left behind? These are not the mysteries I neither wanted nor expected nor enjoy. Some mysteries may never be known and some darkness never lifted. But I know that I’m not alone because of all of you who are reading this and understanding (hopefully) what I say and feel. Amid all of the confusion a light comes on… Amid all of the confusion that comes with this insidious disease. I don’t know where the switches are.the ones that occasionally turn on that light.but I am grateful for being pulled from the darkness I seem to fall into. Perhaps it’s as we read in a publication at the V.A. Hospital last night."Miracles Still Happen"."a miracle is a wonder we find difficult to explain. and after we have learned to explain it, we no longer regard it as a miracle." so with that, I wont try to figure it out.but instead go on to what I learned. Suddenly at the hospital I remembered something I had read in the Sept 2003 newsletter. It is titled "Mind and Body: Head Games and Hypoparathyroidism" by Ken Anderson. wowwwwwww!!! Ken wrote this in an absolutely wonderful way. How well we can understand feeling like a foreigner to our own body and mind.trying so hard to bring together the physical, mental, and emotional effects. Now I read this a couple months ago.read and re-read.but it wasn’t until last night that it became light. After 20 years, Ken still has not been able to bring the physical part of his health care together with the mental.but yet he also states that he knows intuitively there is a direct connection. Ken ends his article with his own words to a song.for me, this is the best part of his entire article."Hypo Para"."all the time.messing my life.you're driving me crazy.I'm so tired of you.I'm a bit too low.bothering me so.every day.just go away". If you have not read Ken's article…I do highly suggest it.and I would also be interested to hear thoughts that others have found from this. Following the article, James Sanders adds his thoughts.again wonderful and enlightening. Ken and James changed my life last night. I have to tell you.I was going to end my life.yes the worst thing I could do, I was going to do. I was convinced by me that I no longer wanted to live! Yet all along I was crying out for help in silence.and the miracle happened.thank you. Psychological Problems Associated with Hypoparathyroidism I have been following with great interest the information provided regarding psychological problems. It is stated in most information found that HP does or can produce mental anguish and despair. Getting help from your family physician or endo is crucial in being able to deal with day to day stress in having Hypoparathyroidism. Never feel ashamed or belittled because of having mental anguish. Sometimes we have a fear of saying our minds are not what they should be. We are afraid of what people might say or think. With this disease we cannot be afraid; we have to stand up for what we know is right. If we realize that HP can be the harbinger of mental stress, then it makes it easier for us to be able to deal with it. Sometimes it is easier to sweep it under the carpet so to speak and not deal with it. But HP is a whole package and that means dealing with the mental as well as the physical part of it. I have had times in the earlier part of my HP that I lashed out at my children and then would ask myself why on earth I did such a thing! I knew that was not part of my personality. I would answer questions with a stern or sarcastic way that I knew did not really come from me. I always ignored it as if it would just go away. Then I got to the point that I did not like myself at all, and knew my children were suffering because of my mental situation. There were times in the beginning that all I could think about was suicide and did not understand where that was coming from. I knew I was a fighter and loved life to the fullest. But it seemed to be something I could not control. Remember this took place when I thought I was the only person in the world with this disease! After several years of this, I decided to get some help with the problem. I talked to a psychiatrist and she assured me that I was not crazy and I was dealing with something that no one understood. At that point I started paying attention to the times I would be not my mental self and discovered that when my levels were very low, or I had severe swings in my levels, was when my mind would not be its normal self. (LOL of coarse that would mean defining what normal is) As I dealt with this, and keep in mind all I had at the time was me and my children, I had to learn how to handle it. I knew if I did not do something, my life would be destroyed. I had my children tell me whenever I was too angry or too sharp with them to bring it to my attention. Now that is something to think about trusting your children to be that honest with you! But it did work, my daughter was the one that could always tell if it was me or it was the HP talking. So I have learned over time to be able to deal with it. I still have times that I do not realize that I am being short or a little anger slips through in my conversations, but I have become much more aware of the problems and the side effects. It takes a lot of mind control, and there are times that even on the best of days I cannot control it. Now I put out warning signs to people that know me well. I always tell them my calcium is on a low and I will not be held responsible for what I say, so do not hold me at my word. They always laugh and say then never do anyway. :) Believe me it has helped. If you can take control over your actions and know it is not YOU yourself that is being that way, but a disease that is hard to understand, it will help. I am sorry this is so long but I guess I just needed to share some of my experiences with you, and hopefully it will help in some way. I do understand the mental side of HP well. It is kind of like a woman going through the change all the time, and cannot be controlled. And for the men with the mental swings I am sure it is doubly hard. So whatever you go through, sit back and take a look at yourself and ask yourself is this the real me or is this something else that I need to take a good look at. Who knows maybe you will be able to see the pattern and learn to handle it a little better. Blessings and strength to you all. Indiana Chapter HP: http://inchapterpb.home.insightbb.com/index.htm The psychological problems associated with Hypoparathyroidism can often be dealt with by appropriate medications and sometimes counseling. Sometimes the pain we experienced early in our lives stays with us as extra baggage we have to carry with us on into our adulthood.
Who knows, maybe we will be “able to see a pattern and learn to handle things better.” I think it is possible if we approach this thing together. What we need to watch out for is to not have to deal with it alone. We are not alone! So many of our members have commented how grateful they were to finally find someone, our Association, and others to help them through the day to day problems we are all familiar with.
A few have mentioned they have come close to pulling the plug and ending it all, but something deep inside stopped them. Perhaps it was a memory from their past, a hope for the future, a friend who was there at the right time and place, perhaps someone even greater looking out for us. To paraphrase Winston Churchill, “NEVER, NEVER, NEVER Give up!” No matter how difficult things may seem, you always have someone who understands what you are going through, and that person is as close as a phone call, or an e-mail message, or right next door, or on your knees.
Life does move on, let’s make the journey together. It would be pretty lonely around here without you. Jan’s Story My brother wasn’t diagnosed until he was in his 50’s. It is good that your kids were diagnosed at a young age, as they won't have to go through what we did to find out what is wrong! Luckily my kids and grandson do not have this disorder, and I have had them tested routinely. The funniest part is when I am examined by a new doctor and they find out about the Hypoparathyroidism they look for a scar on my neck from "the thyroid surgery". They are all surprised not to find one. The hardest part of having this disorder, and it is something that you spoke about as well, is when I get ill, my calcium levels take a real nosedive. My doctor doesn't believe that this is a fact, and I am really tired of having to explain it to him. As well, I had a heart attack in 2000 and I believe that this again is something to do with Hypoparathyroidism - makes sense as the heart is a huge muscle, and calcium levels affect muscles. The doctor again doesn't agree with my theory! Another problem area - I had gall bladder problems and was rushed to the hospital in an acute state, but they couldn't do the surgery until my calcium levels came up - which wasn't happening because I was sick! So I was kept on heavy doses of morphine which causes headaches for me when I am on it for more than 2 days. Can't win! Interesting, your newsletter and one paragraph, in particular, pertain to me is: Apart from Tetany, the main neurological disorders associated with Hypoparathyroidism are epilepsy, Parkinsonism, and chorea. … Intracranial calcification, particularly calcification of the basal ganglia, has long been recognized as a feature of idiopathic (auto-immune) Hypoparathyroidism and Pseudohypoparathyroidism. A minority of patients affected also develop Parkinsonism with tremor, athetosis, rigidity, ataxia, and oculogyric crises. … As with other patients with hypocalcemia, Hypoparathyroidism may cause mental changes such as anxiety and depression. A small number of patients have been described with dementia … Psychotic symptoms including delusions and auditory hallucinations have been described in Hypoparathyroidism. … Both disorders (hypo- and hyperparathyroidism) may cause non-specific psychiatric problems including, rarely psychosis. It is important that these are recognized since the neurological and psychiatric problems are readily and often completely relieved by normalization of the plasma calcium.” When I was 13 - I went through delusions and actually had pictures talk to me. I would go weeks without sleeping and I was in constant motion - couldn't sit still or focus on anything. That is when I was admitted to the psych ward and the doctor thought I was schizophrenic and gave me 2 treatments of electro-shock therapy, which did absolutely nothing for me. They then went on to drug me to the point of not being able to move, which again didn't gain anything. Too bad they didn't administer a simple blood test. Then things would have made sense. The seizures started when my son was born and I would be unconscious for anywhere from 2-10 hours. I was fully mobile during the seizures and ended up falling down stairs, broke my jaw, and many bruises. I was having at least 1 seizure a week for over a year and after changing doctors, I found one who actually read a blood report and he admitted me to the hospital and finally I had an answer. My brother has this disorder as well - and the doctors were really intrigued at this autoimmune disorder which runs in my family. My brother has Hypoparathyroidism and also his pancreas shut down. In my case it is the thyroid and parathyroid. I am going through the feeling tired and sick most of the time, but I continue to push myself to the edge as employers are not at all understanding about someone not feeling well all the time! One symptom that drives me bonkers is spastic colon which seems to run hand-in-hand with this ailment. As well as the calcium deposits that are scattered throughout my brain, which causes major headaches. Most family doctors are quite intrigued with this disorder as they haven't come across it before and they end up driving me whacky too. I am not a guinea pig! Thank you for the information and I will read it when I get an opportunity. Peter Thurlow’s Story Preface: To Share with the medical profession, and with others who may be interested in my experience with Hypoparathyroidism. Perhaps for selfish reasons: to try to understand myself. If I were to select a scripture text for this paper; it would be Psalm 119 v 73:- ‘Thy hands have made me and fashioned me: give me understanding, that I may learn thy commandments’. Acknowledgements: I thank my wife Pam, who has lived with me and supported me, these past 19 years. I have known her since 1976: we got married on 30 January 1982. My parents: Maurice, and Margaret Thurlow, who brought me into the world. They looked after me in my tender years, and in my youth. To the late Doctor Nicolson of the Edinburgh Sick Children’s Hospital, in Edinburgh: with whom I was under, from the age of 11, until about 1980, when he retired. To my GP’s Doctors, Edith Thomson, and latterly Peter N E Berrey, of the Stockbridge Health Centre, who monitored me. To the British Thyroid Foundation, of whom I recently heard about: they sent me some literature on the subject. And most of all, to the saving grace of the Lord Jesus Christ; with whom I met on the Ferry Road, on Saturday 11 December 1971. Introduction:
Hypoparathyroidism is a rare disease: I have lived with it all my life, over 53 years. I was born with congenital Hypoparathyroidism, I had it from birth. My mother, unknowingly, had hyperparathyroidism, and when I was coming into the world, my parathyroids did not develop: I have no parathyroids. This paper may seem similar to my, Peter Thurlow’s Spiritual Pilgrimage: Through the Veil, Beyond the Curtain: But this is written from more of a medical, psychological aspect. This is not a technical or medical description of the disease, but my experiences in living with it. I do not know all the medical terms of the various tests carried out: but they are described. 1. The Early Years: I was born in Christchurch, New Zealand, on 28 January 1947, to my parents Maurice and Margaret Thurlow. I do not remember the first 3 or 4 years of my life, but apparently I was ill at a very early age. The doctors in New Zealand did not know what was wrong with me. I had renal failure; my right kidney was removed. I still have the scar on my right side. My grandmother, Mrs. Elizabeth Simpson, came out to New Zealand, and stayed for a few months. Iit was then that they decided to come back to Edinburgh. We came back by boat in 1950, via the Panama Canal. I was taken to the Sick Children’s Hospital, in Edinburgh, where I believe, an Australian doctor had an idea what was wrong with me from my posture, the way I was sitting. I was back and forth to the hospital undergoing test: and when I was about 6 years old, the doctors tried to transplant one of my mothers parathyroids into me but it did not take. Up to about the age of 11, I was attending the Sick Children’s Hospital, under Dr. Nicolson; then I went under Professor John A Strong, at the Western General Hospital. About the age of 14, I think the doctors tried to experiment, by taking me off the medication, to see if I would absorb calcium through the gut. I became ill with severe tingling in my body, and was not well. I was off school for awhile, and missed some important exams so I had to go back onto the medication. I had fairly steady youth, or adolescence, with the usual growing up problems. I had a fair academic record at school; I go the Edinburgh School leaving certificate in 1962; and 8 0’ levels in 1964. I left school at the age of 18, in June 1965. At school I played rugby, cricket, and athletics. I was quite active. 2. The Experience: I left school in 1965, at the age of 18. I started working as a student apprentice in an Engineering firm, in Edinburgh. I went to college: I got an Ordinary National Certificate in mechanical engineering in 1967: and I got a Higher National Diploma in 1970. It was in 1970, in February, when I was studying for the finals, I went out for a walk in the hills. I was a bit dizzy, and I slipped on some ice and broke my ankle, and tore a ligament. I was in the hospital for4 2 weeks. I sat the finals and managed to pass them, but I was Hi-Doh. The ankle healed in 6 weeks, and I was back to playing basketball, and cycling very soon afterwards. I went back to college in the autumn of 1970, to do professional exams. I was not so good at writing essays, and I failed the exams in June 1971. I was laid off by the Engineering firm I was with. During this time I became a communist: my angry thoughts seemed to agree with the communist doctrine. In the autumn of 1971 I went back to college, as a ghost student. I did not pay any fees. On Friday nights at this time I went to a Christian outreach, at the West End of Edinburgh, where I heard the gospel. I was beginning to see that communism did not have all the answers. To be brief, I heard that the Christians in Edinburgh were having a Jesus march in Edinburgh. It was after the service in the Leith Town Hall, that I met with the Lord Jesus Christ it was on the Ferry Road, that I discovered that Jesus died for my sins it was like a light heaven. I felt this tremendous peace. I began to experience seeing God everywhere, and in everything. I ended up in the Professorial Unit of the Royal Edinburgh Psychiatric Hospital, where I spent 2 months, until February 1972. On looking back, I had a psychosis, or an altered state of consciousness it was at this time I became a Christian. For the first month, everything seemed supernatural, then after the New Year, in 1972, I became flat as a pancake. After I came out of the hospital, I tried to study at college, but could not concentrate: I was in a semi-comatose state for the spring, and early summer of 1972. I got a job with the Civil Service in October 1972, where I spent nearly 24 years as a clerical officer. I remember my best years in the Civil Service, from about 1979 to 1987; after which I moved around in various departments, until I was returned early on medical grounds, in July 1996: because, one of the reasons was, that I was too slow at the work, and latterly I could not cope with the workload. Since I retired, I have taken a new lease on life: I have a small, but adequate pension: both my wife and I are retired. I am very much involved with the church, and take the prayer meetings on occasions; and do some writing; visitations, housework, and reading. I am keeping occupied. I do one thing in the morning; one thing in the afternoon; and one thing in the evening, and then the day is 3. Other Factors: I have been able by Gods grace, to live with my limitations, a full life. Also as long as I can remember, I have been hard of hearing: I am not sure if this was caused by the Hypoparathyroidism but now I cannot hear a thing without my hearing aid. When attending the hospital, for the 6 monthly, then annual checkups, the doctor tapped the side of my face muscles, to see the twitching of the upper lip. Also I had a cuff put on my arm, to have the pressure pumped up, and left for 4 minutes, to see if there were any muscular spasms. I never had any, but it was very uncomfortable with severe tingling in my hand, until the pressure was released. I also had blood taken, to check the calcium level in the blood. Over all the years my calcium levels has been steady. I take the medication as prescribed. Since my psychosis in December 1971, I have been on stelazine tablets. I have tried to come off them a few times myself, and a few items under medical supervision, but I have had to stay on them, as I felt myself going painfully high, and my mind racing. Now I have Parkinson’s disease, which causes a slight tremor in my hands and a slight movement in my mouth. 4. Conclusion: From the leaflets on Hypoparathyroidism, sent by the British Thyroid Foundation, the symptoms which I a)a general tiredness; b)my voice is a bit hoarse and croaky; c)I have experienced pins and needles (tingling) in my arms, and hands; d)I am quit big, 5’11 ½”, and nearly 16 ½ stone: I have a tendency to put on weight even though I have been on diets in the past, I have always put the weight back on; e)I have relatively slow speech, movements, and my thought processes are a bit slow; f)I have slightly raised blood pressure; g)I am a bit restless, and have to be on the move most of the time: my arms and legs cannot stay still for long. Also I have to urinate in the toilet very frequently. As an aside, I believe that calcium, at normal levels, acts as a tranquilizer to the nervous system, and the lack of calcium, due to Hypoparathyroidism, causes a nervousness, and slight anxiety, which I experience. 5. Finally: Through it all, I am able to live with my disease, and my deafness, because as a Christian, I have the sure hope of eternal life: and I am kept by the power of God, through faith and salvation. Jesus is my peace, and my good hope. In closing: I do not know if any of you who read this paper will understand what it is to have Hypoparathyroidism. As I said at the beginning, it is a rare disease yes we are all fearfully and wonderfully made; and God has given the doctors, wisdom and knowledge, to administer the appropriate medicines, to keep us going. Yes God is good, and He doeth good. He doeth all things well. Peter Thurlow, Wednesday 15 November 2000 Brenda Helleman’s Story Hello, my name is Brenda. I am from Holland. I was born with Albright’s Disease (pseudo-Hypoparathyroidism congenic type 1a and hypothyroidism AHO Albrights Syndrome) on May 15, 1968. At first I was thin, but then the Doctor said that I could gain weight by eating papillos. I put on a lot of weight, so then I went to a pediatrician, who was very unkind. He said that I had to be on a very strict diet, even though I was only one year old. I was always hungry, and when I was older I would eat extra food secretly. After that, we went to another doctor who was a professor in a hospital in Amsterdam. As a child, I spent a total of nine months in the hospital in Amsterdam. They did a lot of tests on me. I was the only one with this strange illness. Every week, I was with my mother at the hospital. I went endocrinologists, and also dermatologists for eczema that I still have. In addition, I went to the orthopedic doctors because I was walking on my toes. Among other things, I had to have a cast on both legs for eight weeks. I still walk that way to some degree. I went to a normal school, but it was a special school for those who were behind. And so, classes were not quite like a normal school. There were 10 to 14 students in each class. I didn’t like this school because the other kids made fun of me because I was fat. Because of this, I still have problems today when people laugh, because I think they are laughing at me. In 1983, I moved to Spain and have now lived there over twenty years. The temperature in the summer there is helpful for my asthma. Because of my asthma, in the winter, I have to go the emergency room a lot. In Holland, I had more problems with asthma because of the humidity. Also in Holland, when I went to the endocrinologist, he always wanted to look at my fingers, because the forth finger of my left hand is shorter than normal, and this is a symptom of this disease. After we moved to Spain, I didn’t have a doctor for one year, so I went to a private hospital, but they didn’t know much about this disease, either. It wasn’t until after I had moved several times while in Spain, that I found a hospital and went to an internist. He didn’t do anything for me except tests and blood analyses. Before I went to this doctor, I went to an ear, nose and throat doctor, because there is a shortage of calcium in my blood. Calcium forms under my skin, and it hurt me a lot. The doctors had to surgically remove them under local anesthetic because I have never been under general anesthetic and because of the danger of doing this. The doctor operated on me in the hospital, and this was the start of continuing problems. After this, I went to an internal medicine physician for thyroid problems. Since, 1994, I have gone to a gynecologist because for over nine years I have not had regular menstrual cycles. I have a lot of hair on my face, and so the gynecologist game me a medicine called Diane 35 and that has helped me have a more regular cycle and has reduced facial hair. Also I go to another doctor for the carpel tunnel syndrome in my hands. They have operated on my hands three and I am awaiting a fourth operation on my right hand. This is also caused by the same illness. I have lost 65% of my hearing. I am diabetic and I have taken insulin, but in April 2003 I started a strict diet of modifast (optifast) and have lost 27 kilos and have gone almost one month without having to use insulin. Isn’t this great? Sometimes I have bad times and have tried to kill myself because I feel I am going crazy, going to more than ten specialists. Also, it has been more than 10 years that I have been receiving psychological help. I was sent to a psychiatrist in 2000 because I was supposed to take 150 Meg of Levothroid, but I took 1,200 Meg. This caused my legs to swell up. It made me tired and I lacked the desire to do anything. I am now going to tell you what sickness I have: asthma (for this I go to a pulmonary doctor every six months): the endocrinologist every three months; the orthopedic doctor (every three to five months); the ear, nose and throat doctor (every six months); the gynecologist (every five to six months); the ophthalmologist (every year); and the neurosurgeon for my back. I have a hernia my neck and another problem in my lower back. In April, the doctors operated on me and took out a calcification from my face near my left eye. The plastic surgeon told me that there was a risk that they would touch a nerve resulting in a drooping in my face. So on April 4, 2003, the operation was performed and everything went well. Altogether I have had operations for calcifications almost all over my body. Each time I notice a new one, it is horrible. I take Rocaltrol and Levothroid for my thyroid and for tension. Also, I take vitamins. These are symptoms of my sickness; dry skin, obesity, high blood pressure, high blood sugar, and full face. I hope that my story has helped a little, and maybe you can recognize some of these symptoms in yourself. Please feel free to write to me. I would love to hear from you. Brenda and Peter are two of our newer members. Brenda lives in Spain and Peter lives in the United Kingdom. Legislative Liaison to Work for Us
I have asked James to let the Board allow me to be Legislative Liaison for the
Organization. I am not asking for any money I am asking for a chance to represent you. I will take information you give me and contact legislators and media. It is time this disease became known. I know I am tired of the “you don’t look sick” theory. I take 6 Oscal a day, I take 7 (.25) Rocaltrol. I have IV’s regularly. This is not a disease to be taken lightly and public awareness can do nothing but help us. You can contact me by email; I will do my best to talk to the Doctors, the Legislators, or the insurance companies.
I have been trying to do this, but the matter of having a title and the numbers in the
association make a difference. I run political campaigns, and I can tell you the difference is in unity. If we can find a way to educate the doctors and the public, we move ahead. Our Os Cal, our Potassium, our Magnesium, should be paid for. We have to lobby for that and I feel I can.
Thanks to all the nice comments people have given me. I need a cause and this is it.
Let’s get research money going on our disease and help for us suffering. My disability was approved somewhat easily, but others have problems. Let me help you. Let us be strong as one voice.
[email protected] Karol recently contacted me and asked how she could help. That depends on you. In her home state of Missouri she has been able to accomplish many things by working within the system. She has offered her services on a broader scale, and we should take advantage of her generosity and talents.
Please feel free to contact her about specific projects she might be able to help you with in your home districts. Working together we will be able to let others know something about us and about this weird thing we have to deal with each day.
Parathyroid Recovery Several Years after Surgery Post-surgical Hypoparathyroidism patient and Primary Care Physician I was warned before my thyroidectomy for thyroid cancer, and parathyroidectomy for hyperparathyroidism, in 1996, that I might find myself hypocalcaemic (low calcium in the blood) after surgery. According to the ‘Guidelines for the Management of Thyroid Cancer in Adults’, 30% (30 in 100) of patients after total thyroidectomy will need calcium supplementation with or without alfacalcidol*. Three months after surgery only 2% (2 in 100) of patients will still require calcium supplementation (1). I was unconcerned as none of my patients had ever had a serious problem and it seemed that it was easily treated with calcium supplements and alfacalcidol. I was amazed to find myself needing intravenous calcium for my hungry bones in the first 2-3 days post-op and even more surprised at how ill I felt. My legs were painful and weak but I was sure it would all resolve with time. Worse was to come when I developed a myopathy (weak muscles) due to hypocalcaemia and intentional hypothyroidism (low thyroid hormone) before follow up scans for my thyroid cancer. I found myself barely able to walk; standing was an effort and climbing stairs exhausting. I had to walk slowly or my thighs would burn. All I ever wanted to do was lie down and sleep. I lived in hope that my parathyroids would recover soon. As my treatment was adjusted I began to feel better and my muscles gradually improved, but it was 3 years before I was happy to stand at the kitchen sink or climb the stairs. Unfortunately I then developed breast cancer and required surgery. At that time I was taking about 2mcg alfacalcidol daily without calcium and it was felt that I would tolerate surgery without problems. However, I became very hypocalcaemic within 24 hours of my surgery and began to develop Tetany. My symptoms were controlled with the temporary addition of calcium supplements to my usual alfacalcidol. I decided that this was indicative of little parathyroid activity and resigned myself to living without parathyroids. However, I needed further minor surgery some months later and because of my previous post-op hypocalcaemia decided to have intravenous calcium to try to avoid the problem. I could barely get out of bed the next day and it took my husband to point out to me that I was hypercalcemic (too much calcium). Ever optimistic I thought this was a sign of parathyroid recovery but when I had my parathyroid hormone level measured it was only 2 (normal range 10-65). I was pleased that there was something measurable but the level was so low that I decided that recovery remained unlikely and I would just have to accept life without parathyroids. Over the next year my muscles continued to improve and I noticed a very gradual reduction in alfacalcidol so that by August 2001 I was only taking 1.5mcg alfacalcidol. My alfacalcidol had been reduced slowly as a result of symptoms of Hypercalcemia or raised calcium in blood tests. During this time I still had lots of symptoms that I would think were related to hypocalcaemia, only to find that my calcium was raised, and I found it very difficult to predict my calcium levels without a blood test. In my final two to three months of taking alfacalcidol I became increasingly nauseated in a way that I recognized was due to Hypercalcemia. I reduced the dose of alfacalcidol as a consequence and checked my bloods when I could. I was astonished at the speed with which I came off treatment. During my first week off treatment I often felt hypocalcaemic and took the occasional calcium supplement. The second week I felt relatively well but in the third week I was very nauseated again for reasons that I cannot explain. When my calcium level was checked it was fine. After 3 weeks off treatment my parathyroid hormone level was 25 (normal range 10-65). I truly had functioning parathyroid glands again and two years later I can hardly believe how well I feel. Perhaps the most important lesson I learned when I was hypoparathyroid, was that despite my best efforts I could not keep perfect control of my calcium and had to accept an element of chaos in my control even though that meant I felt ill at times. I spent 5 years constantly thinking about what my calcium level was doing because I rarely felt well. Now I never give it a second thought. My life has returned to normal and I cannot believe how lucky I have been. *Calcitriol can be used instead. 1. Guidelines for the Management of Thyroid Cancer in Adults. British Thyroid Association, Royal College of Physicians, March 2002. www.british-thyroid-association.org Stunned Para’s Wake Up
I would like to express to all of you whose Para’s are waking up, a big
"CONGRATULATIONS!" Medical mysteries can be wonderful at times. That gives hope to all. I know it has to feel very strange to be HP one day and feel Normal the next. I realize it does not happen that fast, but I know it has to feel great. Any little bit of hope that can be given to HP people is a blessing. It would be nice if you keep us informed as to how your body changes and what you go through while the transition is being made. It is so nice to hear good news.
Blessings to you all from Phyllis Blessings Phyllis in Indiana HP surgical
Indiana Chapter HP: http://inchapterpb.home.insightbb.com/index.htm
I think Phyllis said it all, so there isn’t much more to add. In addition, we have heard from one or two other members who have experienced the ultimate Christmas present, although the timing may have been a little off.
While I don’t pretend to understand what has happened in each case, we can’t discount the fact that something wonderful has occurred in the lives of these few individuals. I know their hearts and prayers are with those less fortunate this Christmas, and for those who have to contend with Hypoparathyroidism every day. Perhaps we will hear from the others for the next issue, and we certainly hope that many more of you join the ranks of these truly unique members of our Association.
More Stories from New Members I am writing to you on behalf of my wife, Manho Edwards, who is on your mailing list and is, I think, a My wife is 69 years old, and has Hypoparathyroidism-hypocalcemia as a result of surgery on her thyroid glands in April, 1957. She has been on a "mega dose" of 50,000 IU of Vitamin D, along with daily calcium, ever since her problem was diagnosed six weeks after her surgery. She has had hypertension ever since the surgery, and keeps it under some control with Maxzide and, I think, In February, 2003, she was included in an NIH study of Forteo, developed largely for people suffering from Osteoporosis. While in NIH, she noticed a sudden dramatic drop in her blood pressure after receiving an injection of Forteo, but the doctors took her off the drug because her serum calcium rose too high. Now, she is taking a small amount of Forteo and her calcium level seems to have remained fairly stable. I know my wife is interested in sharing her experiences with others who suffer from the same problem. My wife and I can be reached by email at: [email protected] We are gradually increasing our experience with Forteo, although it is not being used as much as many of us would hope. Even though Forteo has not been approved by the FDA as a treatment for Hypoparathyroidism, teriparatide (PTH 1-34) has been shown to be an effective treatment for the disorder.
The medication, manufactured by Eli Lilly, has been approved by the FDA as a treatment for Osteoporosis. Physicians, however, may choose to prescribe the medication for their patients with Hypoparathyroidism. There is risk whenever physicians go outside accepted regimes. One physician recently wrote me, stating, “I am always concerned about covert non-adherence to medical regimens as a cause of apparent treatment failure. Objective studies have demonstrated a surprising lack of full compliance with many medical treatments, even in circumstances that one would think likely to highly motivate patients to follow the treatment plan.” For that reason, patients should consider using Forteo only after a full investigation of the benefits and risks associated with the medication. The conventional treatment, in my opinion, will work well for most of our members. There are a few, however, where conventional forms of treatment have failed, and the patient’s well being and general health is left to suffer. It is difficult for me to ignore their plights and their pleadings.
One such young man, Hassan Fadhul, who lives in Bahrain, is on a quest to obtain the medication his physicians feel is the key to his medical well being and his future. Others who have been placed on Forteo have to contend with the pre-measured doses provided by Eli Lilly. They find themselves having to take either larger or smaller doses of the serum, each with its own set of problems. I wish it were a perfect world, and all of our patients would be able to have access to the exact medical treatments necessary for everyone to lead a perfectly normal life. But then, if this was a perfect world none of us would have the disorder in the first place. Bridgett Campbell Writes Thank you for the information you sent with your e-mail. The web site was an incredible find for me. I had a thyroidectomy August of 2002. I have had problems with hypothyroid since I was 19 (I am now 37). I had problems for years with a goiter that was noticeable but also not recognized by my family doctor as being anything but being overweight. I have had episodes of a choking feeling, raspy voice and extreme fatigue off and on for 4 to 5 years prior to my surgery. With the last episode, a very astute nurse practitioner decided to do a thyroid ultrasound that was abnormal and possibly thyroid cancer. I met with a wonderful surgeon who had me see an endo the day I saw him, but both stated the thyroid could not be causing my choking feeling or my raspy voice. Both did agree that I had Hashimotos thyroiditis and should have my thyroid out. The surgery was expected to last only 2 hours but lasted 4 hours. My thyroid was extremely enlarged (although not cancerous) with multiple nodules and was packed below my collar bone. Needless to say, they now believe it was causing my choking feeling and raspy voice! Although my parathyroids looked good, it soon was apparent that they were not functioning well (my PTH level is 6). The day after my surgery, I required IV calcium because my level was critically low. I have since had constant symptoms and have yet to have relief. In hind sight, I believe I may have had problems prior to surgery with my parathyroids. I had muscle twitching, cramping and parasthesia starting about 6 to 8 months prior to my surgery. Unfortunately, most physicians do not have a good knowledge regarding this disease and treat this disease too lightly. Armed with the information from this web site, I will e-mail my endo tomorrow in hopes of getting a change in my meds. I don't know what the highest level for Calcitriol is but I don't believe I am at the highest dose I take .5 twice a day. I am currently on 3500 mg of calcium a day (I will be talking to my endo about lowering this). I get physically sick at times at just the thought of swallowing another pill and it has not relieved my symptoms. Symptoms I didn't even know where related to HPT now make so much sense and I don't feel as though I am a hypochondriac. Sorry for "talking" your ear off, but finding this web site has given me hope that my symptoms can be better controlled and I can control this disease instead of it controlling me. Bridgett, it has been certainly been our pleasure to have been a source of information all of these years, and we hope we have been of some help in understanding this disorder and how it can impact our lives.
Don’t worry about talking my ear off, I have a spare! Christina’s Story I finally had the time to read your September newsletter. I cried when I read it, the commentaries from others.and I'm deeply touched and affected by it. All my life I've suffered with what I've termed as being, "An on/off sickly person." Symptoms changed yet were quite clear at each hormonal change of my body. Precocious puberty. Pregnancies. Hysterectomy. What I experienced was never understood, even by family, had symptoms recognized, or known anyone else who felt as I did. In more recent years symptoms have increased/varied. At times they are terrifying as I live alone. Sometimes I have felt "fine" while at other times, for no apparent reason, my body "goes crazy" and makes me feel the same way. The cruelest of all is the response from physicians, even a so called top endocrinologist I elected to see some years ago. (I had sensed it was somehow related to my endocrine system) These are but a few of the comments/questions I've had to endure from many physicians over my lifetime. 1. Would you feel better if I told you that you had cancer? There's nothing wrong with you. 2. Do you take drugs? Have you ever used psychedelic drugs? 3. Do you drink, are you alcoholic? 4. Oh! Are you going through a bad marriage? Divorce? Relationship? 5. You were no doubt sexually abused as a small child. You just don't remember. 6. What happens in your life that you suddenly "feel that way?" 7. Are you dating? Going with anyone? You should. You’re vivacious by nature. 8. Are you getting laid? For years I stopped seeing physicians. The stress from their reactions/comments always "set off" my symptoms. It wasn't worth it. I sought counseling at last. Only to learn and be told that I was the healthiest individual they'd met.including most therapists, etc… I only felt "dingy" or depressed when my body flipped out. The uncertainty of not being able to fulfill goals, make long-range plans, makes anyone depressed at last. Finally, in July, a kindly doctor/orthopedic actually listened to me. More importantly, he HEARD me. All it took was the word parathyroid from him.and I was determined to research it. I called UCSD, boldly saying, "Is there anyone there who would be interested in seeing someone with hereditary PHP? If they are not truly interested.never mind." One expert was anxious to see me in August. I was ecstatic. But.he/they gleaned info from me, looked at me as an oddity.and did.nothing for me.Again.having no recourse, for my own sanity.I researched once again, finally locating/convincing Sharp Children's/Genetics to see me. They called me just this past Friday. Confused as to why they agreed to see me. After listening to me for quite some time, they wanted to help me. So desperate am I that I told them, "If you truly believe you are the ones who can help me in this city.do NOT change your mind. If you do.I will come there, pound on your door, and NOT leave until you do!" I have felt… alone.angry.frustrated.sad.helpless.hopeful.depressed.nervous.enlightened.unable to trust the medical field.yet needing them.I have cried rivers over the last years.and had convinced it WAS in my mind.the times I felt wonderfully well.when nothing in my life had changed. Yet every time I crashed physically.I KNEW there WAS something very wrong with me physically.all the while having specialists ask me."Are you getting laid?" Necessity is the mother of invention.and self-research.It is my hope that one day the personal/family history I have compiled/written will be of great help to many. Then.my years of suffering and emotional anguish will have been for a good reason.In truth, I'd like to write my story with someone, enlighten the medical professionals, and give hope to others with Hypoparathyroidism. Thank you.I will read his article. You may recall I had made an appointment with Dr. Lisa Orloff from your website. I was to see her 22 Oct. Well.I just learned that she is a surgeon, specializing in oncology/Hypoparathyroidism at UCSD, and is not the correct type of doctor for me. I don't know if you could put something on your website that would indicate the doctors' specialties? The appt. was cancelled.and I'm back to square one. However! I still have my appointment. to see the geneticist this coming Monday.I'm working to stay positive. Last evening I recalled the following.In the mid 90's I had a wonderful/kind doc.not for the PHP, as I had no idea I had it at the time. But he had a gift for diagnosing things. One day, I asked him WHY he was able to diagnose so readily, when most doctors cannot. He said, "Christina, all a doctor has to do is listen to his/her patient/s. The patient usually describes what they have.if the doctor listens and does not have his/her own preconceived notion of what is wrong. It's that easy." Unfortunately, he died very suddenly of a brain tumor.undiagnosed.a great loss to all his patients who loved him. The "good doc" of recent days, told me, "It doesn't matter how fancy a medical school a doctor goes to, if he is unwilling to listen to his patients. Listening to them usually provides the diagnosis, or path to it." His wife has become seriously ill, and he sees what she must endure. And.many years ago, I had a great orthopedic doctor. He never once treated me or his patients as if we were crazy, etc. He had lived his entire life with an extremely debilitating form of arthritis, and was very crippled as an adult. Seems to me personal experiences are what teach doctors the true understanding of the patient's side of things.
This for me is a God sent letter for me. I have found an excellent caring health care
provider last week. The last ten have been almost devoid of any health care, but I used to have the best.
I had my parathyroid accendently removed. The hardest thing for me to know is not
feeling well enough to care when my treatment is poor. My brain has been so badly damaged that when I read others had wondered if calcium being low was the cause. I was a 4.0 student had my under graduate degree by 18, played piano up until my surgery at 28 and now can no longer play a note or spell or read and understand.
I make very little since when I speak, even though I know what I want to say, it is like
living with a big stroke. I am not complaining, but why, when I need an infusion am I met with such odd and uneducated medical assistance. Most let me know that I should take calcium at home. I take well over 100 a day and don’t they realize any count below 8 starts removing ca from the bones and the last person who gave me calcium only did it to pacify me. I left with a level of 6.9, and in the 7's is where the emotional trouble starts. When you are in the 6’s you just know you are not worth any better treatment. Pretty sad isn't it? To think of the damage I am suffering needlessly.I am going blind and they tried to make me stop skiing but they won't help me stay well which I believe I could almost be as good as new if they cared.
Many of the letters and e-mails I receive have to do with physician/patient relationships, and are often somewhat negative. This has been another common thread that has followed this Association all of these years.
For one thing, I don’t think there would be an Association today had it not been for some very special and gifted physicians whom I have come to know over the years.
I am concerned about the amount of calcium supplements Helen is taking every day. I feel she should discuss this with her physician as soon as she can so she can hope to avoid more serious consequences in the future. Funny thing about our kidneys,…we need them.
That was not always true in my life, as you are aware, nor apparently is it true for each of you. I think Christina’s final comments bear repeating, because they ring so very true: The "good doc" of recent days, told me, "It doesn't matter how fancy a medical school a doctor goes to, if he is unwilling to listen to his patients. Listening to them usually provides the diagnosis, or path to it." His wife has become seriously ill, and he sees what she must endure. And.many years ago, I had a great orthopedic doctor. He never once treated me or his patients as if we were crazy, etc. He had lived his entire life with an extremely debilitating form of arthritis, and was very crippled as an adult. Seems to me personal experiences are what teach doctors the true understanding of the patient's side of things. I have been trying to find some physicians who would be willing to write about this complex relationship from their perspective, and hope to be able to publish their articles in a future issue of this newsletter. In the meantime, I would like to close with our general recommendation that each of you should strive to become partners with your physician in your medical care.
Ask questions, wait for answers you understand, be pro-active instead of passive. If that does not work, appropriate steps should be taken whenever possible to find a physician who will meet those expectations.
After all, it is your health and well being we are talking about. An Exchange between Nancy and Terri I am in awe of you. What an amazing person! I am honored to know you. I can not imagine the pain that you are going through. Not only physical: but emotional, sociological and spiritual pain. You have been through so much and still have a good attitude. Yes I know there are days that are worse than others. That is what the HPTH group is for. I also have to take some responsibility with my response. I was voicing from my own concerns as a nurse. I would get so concerned, upset; pissed off LOL, at the attitude of some people when a patient would be in their care. These nurses would be more concerned with their break than taking care of their patient. In addition to the uncaring attitude of the doctor who is on his/her high horse and not listening to the needs of his/her patient. This is what I am going through too since I was diagnosed and my doc is in the private sector. :-) Not sure if it is worse that I am a nurse or not. I already knew that there were some health care professionals in your corner to make your day. Yes it is the smile, the touch and the ability to access a port without pain that helps the day go right. Ii believe that it was heparin and/or TPA that was put in your port to keep it from getting clots. Yes cancer nurses are the best! I don’t know how the VA works, but can you switch to cancer from endo? Because I am new to this disease, Ii am not sure if your particular case would be better managed by the cancer doc. Just a thought. I know that your children know you love them. Children have the ability to know they are loved. You have over come many hurdles in your life. You are just a very special woman. Thanks for your suggestions and comments. I almost always forget that when I just throw something out here it may affect someone else in a negative way or come across as very discouraging. I should clarify.my situation and the medical establishment.cuz I don’t want you to think I am against the entire medical world out there. First, my situation with this disease is a bit rare. The majority of people with post surgical, such as mine, respond pretty well to oral medications. For unknown reasons, my body doesn’t recognize the meds. I have been thru many tests to try to find out why.but nothing YET. I, myself, think perhaps it has something to do with my being very small.in that I am not small by choice.and I burn calories just thinking about food. Seems logical in my medically challenged mind that I may burn up the meds at just as fast a rate and maybe even faster at times. Then, all my medical care is done at the James A. Haley veteran’s hospital in Tampa, Florida.so the confusion of a rare disease along with the government is challenging. I'll stop there ~l~ As for the medical establishment.I do have many people (NOW) at the hospital who really do care and have the utmost compassion. my biggest barrier to better care is my endo doctor.who is not open to dealing with a patient who has researched and searched and found info that they have not.who is not open to a pro-active patient.not open to suggestions. One of many examples: when I had no veins left and was approaching the definite need for a port…I asked to try a different form of "d" first.the Ergocalciferol.and was told that there was no way it would help me. But how would anyone know if it wasn’t tried.especially when it has been proven to have turned some peoples lives around and been the 'key' to managing their Disease? But then there are others that just make my day and bring me a smile and a bit of hope too. Like yesterday.I DID go to oncology (after saying I wasn’t going there). The nurses there are sooooo cool.flushed and opened my port.then added some of that stuff (TPA?) just in case the little opening is trying to get a little sheath covering. She was so gentle I could even watch her do everythingggg.unlike others when they stab the port and deem it a failure. Finally she was so appalled at the way others have failed this port.she put a specific set of notes into the computer for further usage instructions. Not a guarantee.but another bit of help and hope. the bestest part of my time there yesterday was when she gave me a hug and called me "sweet pea".HA! This is getting kinda long, but I thought it may help you in understanding more of where I am coming from when I do post things that are definitely negative. I try everything I can to take care of me.I can no longer work which is a big blow for me (at 44). because a big part of taking care of me has been taking care of my children too. It's the feeling of providing when there are no provisions from anywhere else, the feeling of successfully leaving a violent marriage.living in a domestic violence shelter with a backpack.and 4+ yrs later having done what I was told I would never do. But now I can do very little with and for my children.in fact, there are times I cannot even reach them cuz other people are doing all the things that I want to do. It’s hard to go to bed at night and not have been able to at least tell them how much I love them. Yes, Ii too believe(d) that in taking care of me then I could take care of anything.but for right now, all that I do to take care of me hasn’t YET led me to be able to take care of anything else. My whole life is centered on trying to stay alive.trying to take care of me.as trying as it is. The simplest things take all my strength. I do thoroughly enjoy sitting outside and soaking in all the smells and sounds around me.watching the wildlife or one of the pets when they don’t suspect anyone is there. I was born with a guitar in my hand.now this is a hard one.I rarely can play now. Hopefully this port will slowly allow my hands and arms to heal.though the calcium fluctuations put havoc on my muscles. My music has always let me out of my head and move onto a feeling of ease and peace. For now, this is a hope.that this too will return in my life. OK now I stop, cuz Ii do have a tendency to go on and on for a longggg time ~l~ I get on a roll.think my levels could follow a roll rather than a superball action? HA! Thanks for caring.and by the way.this group helps me tremendously when I do feel ok or when I feel like there's nothing else I can do.no matter how I feel or what I write I'm always accepted.super cool :-) Two young women reaching out across cyberspace to give aid and comfort to each other…that is what this Association is all about. When I read all the stories I receive, I wonder how much poorer the world is because of the talents that are lost to Hypoparathyroidism, how much education is lost, how much music is never enjoyed again? The price is way too high. Kimberly Sminkey’s Story I have just finished reading this month's newsletter and am very interested in receiving a copy of the full brochure on ALBRIGHT'S HEREDITARY OSTEODYSTROPHY. Could you please send it to me if possible or point me in the correct direction so that I may get a copy. Although, I feel I know a great deal about Alexis' medical problems, I am always on the look out for more knowledge. Thank you. I do not quite know what to write, Alexis has had such a long road with her disorder, some day I will send her story. I was just wondering who I could contact that has a child with either, AHO, PHPT, or something similar who I could talk with. Lately, I have been realizing that although I am very aware that she is the one with the disorder, I have been feeling sorry for myself. I have just realized that I am being selfish (that’s how I feel.)Mentally, all of this that goes with AHO is very hard to deal with for me, I am always trying to find out why she feels the way she feels or watch for muscle spasms or new complaints, etc, without completely realizing she is the one who has to live with this physically for the rest of her life. I hope that this is making sense to you. She doesn't completely understand her disorder, she is developmentally delayed, and she knows she sees doctors more than others, and has lots of blood drawn, hospital stays, etc. but she sees herself as a normal kid. I, on the other hand, have time dealing when things get a little crazy. Oh well, I am rambling, sorry. I just wanted to let you know that the newsletter truly touched me, and seemed to speak to me. I was just wondering is it normal and ok for a parent to grieve off and on for 7 years the loss of a normal life? I love my daughter and would not change anything but I do sometimes feel that I grieve (if that is the correct word) for myself and for her. One of our specialists kindly pointed out to us that our family life IS NORMAL, IF ONLY FOR US AND NO ONE ELSE, WE ARE NORMAL AND OUR LIFE IS NORMAL FOR US. It is getting late and I am probably not making any sense, I do not know how to contact anyone or leave a message on the boards yet so please excuse me. Thank you for this wonderful site. Several years ago I was fortunate to come across a book by Robert Naseef, Ph.D. The book, was essentially about Tariq, his autistic child, but was more specifically written for those parents who have been blessed with special children. The book, appropriately titled: Special Children, Challenged Parents: The Struggles and Rewards of Raising a Child with a Disability was published in 1997 by Birch Lane Press/ Carol Publishing Group, is the story of his journey with Tariq and his work with families of children with special needs. I think you would do well to obtain a copy of the book and read it because of the insights and advice Dr. Naseef offers his readers. There are some things we can do for you and your family now. As you are aware, we do have several members in our Association with the same disorder. We will be happy to place you in touch with them so you can continue this journey together, instead of alone. As for the article about AHO, we will be happy to provide it free of charge to anyone upon request, or you can go to our Web Site and read it there. Kay’s Story Thank you so much for responding back to me! When I got your e-mail tonight, it was like finding a message in a bottle that had washed up to the shoreline of my island of loneliness with this disease! When I read your question "is there anything we can help you with at this time?” it was like asking me to dance! Just about everybody around me is taking off in another direction! They "hurt" for me, but they "don't understand what I'm going through," or "how I could possibly not be getting better by now!!" Yes.there is a lot you can help me with, I am sure! Thank you so much for asking! Here's a start.
I am pretty much managing my own care by paying attention to my symptoms, am not under the close care of a good endocrinologist at this time (I really need one, though!!), and this leaves me feeling very insecure with the management of especially my endocrine/metabolic diseases! I have also been diagnosed in secondary metabolic bone disease (CPPD) and Fibromyalgia. I suffer from dysphasia, GERD, and IBS as well. And now, just last week, my OB/GYN diagnosed me in Interstitial Cystitis (another rare disorder of bladder tissue scarring) and has referred me to an Urologist. My appointment is this Monday morning, 9/29! I'm quite concerned, since a CT scan during my last hospitalization in November 2002 showed a "hemangioma in my liver" and a "cyst in my right kidney". The GI doctor I was referred to for care of my liver said they were both very small and probably not serious; there was no need to follow up with a specialist. NOW.my OB/GYN says it's probably a kidney stone or tumor that showed up.the burning, frequency, urgency and pelvic pressure I constantly feel and have complained about since last November I've been told is just part of the symptoms of my Fibromyalgia.get used to it! I sense something bigger is looming now.kidney wise! I cannot hold my head fully upright, and my neck ROM is limited to a 20 degree box. I must hold my head to the left with chin tucked to be able to talk and swallow. My neck is completely scarred inside from my parathyroid surgery which turned into a "carotid to carotid neck skeletonization" last February 2002, because my surgeon "could not find my parathyroid glands" he said, so he "just stripped everything out hoping to get them!!!" There was no parathyroid tissue found in the pathology report!! I am on Rocaltrol and Calcium Citrate as well as Synthroid. In January 2002, I was diagnosed in primary hyperparathyroidism, for the second time! This same surgeon had removed one parathyroid gland with benign adenoma back in January 1996 and there were no complications then.regarding my neck anyway. I was put on Fosamax for five years along with calcium supplements, regained much of my lost bone mass, suffered with heel spurs and plantar fascitis, bone pain, fatigue, lack of concentration and memory, and then in December 2001, a new family doctor ordered complete blood work on me and suddenly discovered that my CA was ll.2 and my PTH was 77! Since I had a history of parathyroid disease, she immediately referred me to the same endocrinologist (we only have one here in town) who said "those PT glands have to come out!" A surgery to remove the remaining glands and transplant one of them into my left forearm was scheduled quickly.February 19, 2002. I'll never forget this day in my life!! I woke up in vocal chord paralysis (still struggle), dysphasia, cervical esophageal dysmotility, Hypoparathyroidism (no PT glands, OR now devascularized) and hypothyroidism (removed 3 of the 4 lobes! My thyroid was fine before this surgery to my knowledge! The surgeon told me that he took everything out looking for my diseased parathyroid glands, even went down into my chest to strip out my thymus gland because often the PT glands hide there! He said he only "left my windpipe, voice box, and two nerves." My parathyroid glands were nowhere to be found. He said he fears that I will have trouble again!
I have had a nightmare recovering!!! It has been a year and a half and I'm still not stable!! I am on Synthroid which must be kept at a 4-6 hour distance from calcium, so I end up taking it a lot of times in the middle of the night. My TSH has ranged from 2000 to .69 where it is now, and the Endocrinologist I've seen last told me that .69 was fine! He just wants it to stay within the range of 0.4 to 4.0. I'm really not trusting of Endo's anymore!! This one is befriending my previous one who ordered the surgery also. I have gained over 30 pounds from hypothyroidism!! For my Hypoparathyroidism, it has taken me a long time to find the right calcium I could swallow and apparently my body would absorb.I know I need to keep it between 8.8 and 9.3.I am symptomatic intermittently throughout day, with numbness, spasms, and face/lop/eye tingling.feels like worms are crawling all over my face! I have a most difficult time at nights.cramping, arms and legs "go to sleep", having to go to the bathroom, choking on saliva.causes my sleep pattern to be broken all night.actually I just have a long series of naps.wake up feeling worse than I did when I went to bed!! Stiffness and achiness especially in feet and ankles.elbows and shoulders! I stay fatigue, talking causes me to hyperventilate, and 'm not sure what symptoms go with what diagnoses for me!! I have had tremendous bouts of heart episodes.PSVTs.which the cardiologist wanted to put me on a calcium blocker until he learned I was in HypoParaT.then said was all metabolic.calcium fluctuations were probably the cause for the tachycardia attacks, and he couldn't do a thing for me! The first year, each of my six specialists wrote my symptoms off to one of the other specialists' area of expertise.so I never really got any relief until I pretty much got on the Web, researched, and began to take control of my own care management! Jim, thank you for being here.I'd appreciate any comments and/or suggestions, recommendations . more of Dear Kay,
I was glad to learn you kept our e-mail address too! You would be surprised how many members have been lost because they moved and didn’t tell us, or for some other reason. Hi, James! I was wondering if this June 2003 newsletter was the last one you've distributed. I just found it in my archive e-mails, and so glad to have your address! I haven't written you my story, yet, but will soon! Also.I'm most anxious not to lose touch with you! I'm in the throws of both liability and disability claims right now.will be anxious to find some Hypoparathyroid folks in my area to converse with! There is only one Endocrinologist in my area, and I would like to see who others in my area are seeing and if they are happy with their care with that Endocrinologist. Thanks for all you've done and are doing for the cause!! Problems with the Hypoparathyroidism Association I didn’t mean to cut Kay off so abruptly. This just seemed like a convenient place to interject some comments about the ongoing problems we have been having with our Web Site since this past June and what is being done for the future.
Many of you will recall the web site crashed last June, and it took a few weeks before we were able to get it back up again. We noticed almost immediately there were several problems with the newly restored web site, none of which we have been able to correct in the interim. Because of our growing concern for the continuance of this vital service to our members and anyone seeing information about Hypoparathyroidism the Board of Directors decided to look elsewhere for a new host and server.
For the past few years Net Communications of Rexburg, Idaho has literally been our savior, having pulled our web site out of Cyberspace once before. They have graciously been our host and server at no cost to us, and for that we will be grateful forever. Having to tell the manager of our decision was one of my most difficult decisions as President and founder of this Association, because I did not want to give him the impression we did not appreciate everything he and his staff have been able to do for us for the past couple of years.
It was our opinion, and one I still believe, we had become a burden to the manage and his staff, taking valuable time away from those paying customers who allowed them to help serve your needs. In addition, we found ourselves taking up more and more of their time as they tried to find and repair all the problems associated with the web site.
We have contracted with a company in Salt Lake City to take over the operation of the web site, to transfer the information to their server, and to repair all the problems caused by the crash this past June. This process is underway now, and should be completed within a couple of months. Our domain name and address will remain the same, and we hope to be able to include several enhancements and additions to help make the web site even better than what it has been in the past.
Do you want to be listed in Our Member Directory? This may seem like a strange question to ask, but it is an important. One thing we have tried to do from the beginning is to respect the privacy of those who wished to remain anonymous. As hard as we tried to achieve that goal, we failed in one instance, and had to place the entire Member List on the web site under revision until the problem can be corrected.
If you do NOT want us to list your name in our web site directory, please let me know. We will make the appropriate notations to prevent this from happening. Are our Links Still Valid? Many of you have taken advantage of the several links we have offered on our Web Site. That is, after all, how we can learn more about this strange medical disorder. One of the problems we encountered after the June crash was the inability to add additional links to our web site. In addition, we found ourselves unable to correct a link from one of our earliest supporters. The link to the American Self Help Clearing House had changed over the years until the one we had on our web site pointed to a pornographic web site. As with the Member List, the only way we could correct the grievous error was to place the “Links” section under construction to prevent anyone from accessing that part of the web site.
We would appreciate it if you would let us know whenever you notice a similar problem with anything on our web site. Our goal is to have a web site we can all rely on as a source of credible information about Hypoparathyroidism. That has not changed, nor will it change.
Speaking about Links… I have always relied on our members for much of the information which has found its way into our web site. I receive information about various links to other web sites, articles of interest, in addition to the regular e-mail and letters I receive each day.
It has not been different these past few months. Are You Curious about Boron? Have you ever wondered why Boron may be good for you? Check out these links. http://www.oznet.ksu.edu/pr_suppl/athletes/boron.htm Hypocalcemia: Diagnosis and Treatment Chapter 7 - Lorraine A. Fitzpatrick, M.D. http://www.endotext.org/parathyroid/parathyroid7/parathyroid7.htm This is some good information about Hypocalcemia and how it can be diagnosed and treated.
The calcifications of the brain or intracranial calcifications are more
common in idiopathic and if I am not mistaken pseudo (??) I don't have my papers here with me but will give some more references tonight.
http://www.crcpr-online.com/pub/vol_6/no_1/1092.pdf http://www.endotext.org/parathyroid/parathyroid7/parathyroid7.htm It was a beautiful day for our regional meeting. The excitement was high and the preparations were in order. We had tons of food and drink for all. We had members from Illinois, Kentucky and Indiana. The first meeting for the Indiana Regional! We had one table that had information for every type of Hypoparathyroidism there is. We had made posters with the pertinent information re: all forms of HP. We made folders with paper and pencils added for each to take notes if they wanted. It also gave each one something to carry the information home with them. The Baker family was the first to arrive, so we put them to work helping us carry everything downstairs. They were wonderful people and I am so glad I got to meet them. I was the first person they had ever met that had HP. I know the excitement in that! (Mrs. Baker as you read this I hope you have considered having that knee surgery!) The Baker’s do not have a computer so the only way they have of receiving info is through James Newsletter. I provided enough reading material that it should last about a year for brain absorption. I’m smiling as I write that. I hope that the meeting was beneficial to you. I would like to hear from you to see how you liked the meeting and if there is something else we can do to make it better. I would like to take this opportunity to thank them for coming. I really appreciate their support. The next family to come in was the Meyer’s family from Greensburg, Indiana. I was lucky enough to meet them at the Ohio regional meeting. My goodness how those boys have grown! I had tried very hard to print out enough information to help with children having HP. I found some good credible info, but wish I could have found more. I was really hoping to have a speaker from Riley Children’s Hospital, but that was not feasible for this years meeting. I am already working on that for next years meeting. The Meyer’s boys are an absolute delight. I so enjoyed them. It was really funny because Mary Beth (the MOM) wanted the boys to sit and listen and learn about some of the topics we were discussing, but being typical boys they wanted to go in the other room and play with the other children. Heck they may have HP but that’s boring stuff to them, they have better things to do, as children should, playing, laughing, and having a good time. Mary Beth you do excellent work with the boys! And I mean that from the heart. Any suggestions from you re: the meeting would be appreciated. The Doctor I had asked to speak at our meeting re: bones and HP did show up. He was wonderful to even be there. It was so funny; he had taken the time to print out 20 copies of information regarding HP for all of us. But as he came in and saw all the information I had provided for everyone he said there is nothing I can do here. His statement was; “Phyllis you already have all the information that is needed, and you know more about this disease then I do. You know everything there is to talk about.” I said, “But what about how HP affects the bones and the degeneration, his reply was you already know that information.” So he looked at the group and excused himself saying, “Phyllis is the only one I have ever known that has HP, Mary Beth spoke up and said well now you have met 4 people with HP.” (YOU go Mary Beth) Needless to say, he did not stay. I had made a folder for him with all the information I had available. He is an Orthopedic Surgeon. And he stated’ “I am just a hip and knee guy and I do not deal with this sort of thing.” I do admire him for even showing up or should I say taking the time to take an interest. The reason I asked him to speak at our meeting was because he was the only Dr. I could find that even had a clue as to what HP is and what it is about. He may be only a hip and knee guy, but he is very knowledgeable about HP. We thank you Dr. Tannenbaum for taking an interest in us. My best friend from Kentucky came to the meeting. She does not have HP, but she has taken a big interest in HP and she has helped me tremendously through my hard times. She has always been there for me and has taken the time to learn about the disease. She has given information to Dr’s for me in Indiana and Kentucky. She even got a food tray donated for us. She is a wonderful person and there should be more like her. Thanks Elaine, my love to you! I am so glad you were there! I would like to take this opportunity also to thank my two dearest board members, Lori Sweet, Vice President, and Krista Beller, Secretary, Treasurer. Without them and their help, this meeting could not have taken place. They worked very hard helping me get the information and setting up, getting the food together and planning. They have been a godsend to me through all of this. There support is phenomenal! I thank you Girls from the bottom of my heart. Hopefully next years meeting will attract more members and we can share and help even more people! I love you both very much. (My daughter and my daughter-in-law.) My daughter did make a speech about growing up with a mom with HP. It was a good speech and I thank you. All in all I believe the meeting went very well. I hope it was a good learning experience for all and the information was helpful. If it helped one person it was worth the effort. I would also like to thank the following sponsors for there donations and taking the time to listen and learn about HP, Kroger, JC Foods, The West End, AAA, Saps Bakery, Steak and Shake, and Dr. Tannenbaum. I do hope to see more members in the Indiana and Kentucky area at our meeting next year. I am open to suggestions on dates and ways to attract more people to the meeting. I can be reached at: [email protected], or at Phyllis Beller 2239 Chestnut St., Columbus, Indiana 47201. Phone: 1 812 376-0037. Please feel free to contact me at any time. Just to talk if need be or for information, or suggestions. You can also contact me through my website: http://inchapterpb.home.insightbb.com/index.htm We laughed, we learned, we shared, we ate, what more could you ask for! Thank you all for making the Indiana Regional Meeting 2003 a great success. I am really looking forward to next years meeting. Pictures have been provided to James to put on the website. (President of the Indiana Chapter of Hypoparathyroidism)
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