Hyperparathyroidism

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Hyperparathyroidism
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    I’m new here!

    Hi, I’m new in this space. Sharing a body with chronic dis-ease from early childhood trauma + biological prpediaposition. Hoping to strengthen my resolve: I am loving my body and I am tending to my optimal wellbeing and vitality.
    #MightyTogether #BipolarDisorder #Anxiety #Migraine #BorderlinePersonalityDisorder #Fibromyalgia #PTSD #ADHD #EatingDisorder #Grief #me too #incest Survivor #recovering Addict #hyperparathyroidism #chronic Pain #djd

    3 people are talking about this
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    Community Voices

    RECOVERING

    My recovery is so slow, but now that I am feeling a little better I keep thinking I should be able to will myself better the rest of the way.
    Or maybe I'm not really sick -- if I would just get up and get moving I'd be fine. Or if I just lost weight I'd be fine. That I'm a lazy sponge forcing my family to take care of me instead of taking care of myself & pulling my own weight Intellectually I know these thoughts are not true but emotionally I am losing this battle right now.

    I've fought hyperparathyroidism for close ton5 years now - January 5, 2021 I had 3 of my 4 parathyroid glands removed because all 3 had tumors on them. Thankfully one only needs half of a gland for health. I have double that! (Thankfully all the tumors were benign.) Since surgery it has been a Hormone storm as my system rebalances.
    There have been 3 out-of-State trips I needed to make, one of them by myself. The Fibromyalgia Monster that invaded my body flares after travel. The changing pressures & weather of Spring flares both the FibroMonster and migraines.
    I am trying to keep up on my PT exercises to stave off spinal surgery because arthritis is narrowing nerve pathways -- yet can't manage all the exercises each day.
    Yet I feel that if I am not exhausted, wrung out & at the end of my energy, I've just been lazy today.

    Any ideas to help me change this "stinkin' thinkin'"?

    #Hyperparathyroidism
    #post surgery
    #Fibromyalgia
    #Migraines
    #chronic Illness
    #Arthritis
    #GERD #diverticulosis #IBS -D #Intestinal Dysmotility #Undifferentiated Eating Disorder
    #Depression
    #Anxiety
    #Abuse Survivor
    #Highly Sensitive Person
    #RAISED in a low-grade Cult

    16 people are talking about this
    Community Voices

    So tired 😴

    #CheckInWithMe #DiabetesType2 #AnkylosingSpondylitis #GADsucks

    I’m so tired of trying and just getting more diagnosis!!!
    Finally had to go see a Chiropractor because my neck and back were hurting so much...and it’s helped. But during that time my Dr told me my blood calcium was high, ran another test and I was told I had hyperparathyroidism (over active parathyroid) and will probably need surgery. I go see the surgeon on Tuesday (today). I’ve been having trouble with eating, nausea and vomiting...so now I have an endoscopy scheduled in a week!!
    My husband died almost 2 years ago and I’m alone...all family is out of state, so I’m having to arrange rides with friends and my son (who is 2 hours away) said he’d come up for my surgery.
    My sleep is horrible!! I either can’t get to sleep, can’t stay asleep or am just exhausted! No energy...I want to do things but I just can’t seem to get going. Been trying not to push myself but mentally I kick myself for not doing everything that I need and want to do.
    I would just like to feel “better” again!!! 😢

    3 people are talking about this
    Community Voices

    Any advice for having a job while dealing with symptoms?

    I struggle with pain, fatigue, and brain fog, with some occasional nausea mixed in for fun. I recently got a job which I need to stay at in order to pay the bills, but this is the first time I’ve had a job since my symptoms started and I’m not sure how to work and manage my symptoms at the same time. Anyone have any tips on how to do this? #Hyperparathyroidism #Pain #Fatigue #BrainFog

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    Community Voices

    Three telephone appointments missed - but not by me

    #Hyperparathyroidism I woke at 0400, not great I know. Stayed awake until about 1300 and crashed out in bed with a comfy cat until the alarm at 1600 for the 1630 appointment. I sat with two phones with signal and waited the ‘they will call within the hour time slot’ in fact I waited for two hours. I have emailed the patient liaison team because this is the third time this has happened in a row. My PTH and serum calcium are rising, my Swallowing is so bad I am on liquid feed and fatigue flattens me every day. More hassle to sort out when I don’t have the energy to stay awake all day! It is now 2030 and I am in bed again.

    Community Voices

    Thank-you Mighty Supporters

    Tuesday, November 24, 2020, has come and gone. I now have a med-a-port.

    I felt like a mack truck had smacked into my chest post-operatively. I have never had anything hurt so badly. Hear me, this is not typical of port placements. I seldom do anything medically that doesn't have a unique take on whatever I am dealing with. For a former athlete, use to falls, crashes, and skiing off cliffs (by accident,) feeling like a mack truck hit me is saying a lot!!!!!!!!!!!!!!!!!!!!!!!



    I seldom do anything typical of any health concerns. The port placement was no different. In fact, the decision to get a port was more than the right thing to do. It had become almost impossible to find and access a vein on me. If someone did get in a vein the IV catheter would not thread, would not flow, IV meds couldn't be pushed, and blood could not be drawn through it.



    Some of you may recall that I have hyperparathyroidism and post-operatively in August 2020, I had a DVT. The clots blocked up my left leg but also did other damage. There are only to be 4 parathyroid glands. They are smaller than grains of rice. Once removed they are not to grow back. Mine do. In 1991 I had 4 glands and 4 ademomas removed. Same in 2017. Are you counting" That's 8? I now have five more glands showing on the scan. It never occurred to me that surgery of the neck and chest could destroy one's vascular structure. The typical veins used in a port placement were all clotted. I few other veins had been obliterated. After multiple attempts to canulate the usual port veins, my surgeon had to go all the way up to my right shoulder and make an alternate path to the heart vessels. The surgeon apologized profusely for the pain I was going to have and the bruising. He said he hoped I wasn't planning on wearing an off the shoulder dress over the holidays. I said I certainly made him work for his paycheck.

    1 person is talking about this
    Community Voices

    Chronic Illness vs Healthcare Providers

    DI am new to The Mighty, but, I don’t feel so mighty. I thing I handled life challenges well, considering what I’ve had to deal with.

    I was born with Crohns Disease at a time there were no diagnostic tests and gastroenterologist did not exist. By age 14, I had symptoms of RA. But, no one believed me. I was an athlete, I hurt and felt sickly, from training everyone claimed. I knew that was not the case. I suffered for years. I nearly lost my career as a registered nurse because I never knew what days I might be able to work. After the 1976 Olympic trails, I hung up the skis and my competitive days were over.

    It was 1994 before I was finally diagnosed with what was then named negative inflammatory arthritis and now called RA. The fact that I was seronegative, meaning my RA factor remains negative despite having the disease. Once I started methotrexate I improved dramatically. My Crohns Disease and RA went into remission for a short time. I was energized again, going to graduate school, becoming a nurse practitioner, and earning a doctorate of nursing practice. And, just as suddenly as I went into remission, it had a return of debilitating illness.

    To date I have, in addition to the Crohns Disease and RA, developed hyperparathyroidism, Diabetes Mellitus, Hypertension, acute renal failure, recurrent small bowel obstructions, deafness, visual impairment, chronic pain that is uncontrolled, pulmonary emboli, restrictive lung disease and the list goes on.

    The sicker I get, the more difficult it gets to find appropriate healthcare. I have an expectation that my healthcare be timely, safe, and effective. Sadly, that type of healthcare is gone forever. I am experiencing physicians and nurses who ignore me, say cruel and inappropriate comments and drag their feet with regard to prescriptions, medical equipment and diagnostic studies. My needs do not get met for months and only after I become angry and a pain in the butt.

    Access to care goes far beyond having insurance. It is finding the physician who is responsive and nurses that are doing more than collecting a paycheck.

    I have just lived through the worst 4 weeks of my life. My healthcare providers pushed me to the point of contemplating suicide. I was in severe, irretractable pain, vomiting for days, experiencing weight loss due to not being able to eat. I kept reaching out to my physicians only to be blocked from reaching them by answering services and nurses. I was abandoned and ignored in my time of need. So, I made a self referral to Hospice. Then and only then, did my physician check in. Now that I have his attension, I have to get his nursing to stop obstructing my care. Each situation I have to address, brings with it, the risk of being dismissed from a practice. Of course, the patient is always in the wrong. This patient was suffering beyond belief but expected to be happy cheerful and user friendly.

    This is so wrong. It is what it is.

    4 people are talking about this
    Community Voices

    When Others Push You to the Breaking Point #

    I am new to The Mighty, but, I don't feel so mighty. I thing I handled life challenges well, considering what I've had to deal with.

    I was born with Crohn's Disease at a time there were no diagnostic tests and gastroenterologist did not exist. By age 14, I had symptoms of RA. But, no one believed me. I was an athlete, I hurt and felt sickly, from training everyone claimed. I knew that was not the case. I suffered for years. I nearly lost my career as a registered nurse because I never knew what days I might be able to work. After the 1976 Olympic trails, I hung up the skis and my competitive days were over.

    It was 1994 before I was finally diagnosed with what was then named negative inflammatory arthritis and now called RA. The fact that I was seronegative, meaning my rheumatoid factor remains negative despite having the disease. Once I started methotrexate I improved dramatically. My Crohn's Disease and RA went into remission for a short time. I was energized again, going to graduate school, becoming a nurse practitioner, and earning a doctorate of nursing practice. And, just as suddenly as I went into remission, it had a return of debilitating illness.

    To date I have, in addition to the Crohns Disease and RA, developed hyperparathyroidism, Diabetes Mellitus, Hypertension, acute renal failure, recurrent small bowel obstructions, deafness, visual impairment, chronic pain that is uncontrolled, pulmonary emboli, restrictive lung disease and the list goes on.

    The sicker I get, the more difficult it gets to find appropriate healthcare. I have an expectation that my healthcare be timely, safe, and effective. Sadly, that type of healthcare is gone forever. I am experiencing physicians and nurses who ignore me, say cruel and inappropriate comments and drag their feet with regard to prescriptions, medical equipment and diagnostic studies. My needs do not get met for months and only after I become angry and a pain in the butt.

    Access to care goes far beyond having insurance. It is finding the physician who is responsive and nurses that are doing more than collecting a paycheck.

    I have just lived through the worst 4 weeks of my life. My healthcare providers pushed me to the point of contemplating suicide. I was in severe, irretractable pain, vomiting for days, experiencing weight loss due to not being able to eat. I kept reaching out to my physicians only to be blocked from reaching them by answering services and nurses. I was abandoned and ignored in my time of need. So, I made a self referral to Hospice. Then and only then, did my physician check in. Now that I have his attension, I have to get his nursing to stop obstructing my care. Each situation I have to address, brings with it, the risk of being dismissed from a practice. Of course, the patient is always in the wrong. This patient was suffering beyond belief but expected to be happy cheerful and user friendly.

    This is so wrong. It is what it is.

    #

    5 people are talking about this