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  • Misdiagnosed Graves Disease???? (Hyperparathyroidism)

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    Old 02-19-2013, 02:33 AM   #1
    Join Date: Nov 2004
    Posts: 3
    mom27 HB User
    Misdiagnosed Graves Disease???? (Hyperparathyroidism)

    Hi Everyone. This will be a long post however wanted to give a heads up on a condition that due to lack of knowledge seems to go misdiagnosed, as in my case. For over ten years I have been treated for Graves disease. Meds did nothing to raise or lower levels nor did they make me feel better. I was on and off of meds constantly. During this time I was treated by two endocronologist by two different clinics. Then it happened. I became sick. Sick as in all over health went down. Someone would walk past me and sneeze and I would catch what ever they had. And when I got it, fighting off the bug would take me twice as long as the next person. Bowel issues, ten times per day or more. Bone pain became so severe I could not touch my tibia's without hitting the roof from the pain. Developed a soft tumor in my knee which eventually led to a total knee replacement. Sleep was difficult to manage more then two hours at a time and this went on for twenty four hours per day.

    Being a spine patient with multiple spine operations fusions etc...I was losing my ability to walk or stand for more then a minute at a time. The pain was becoming unbearable and life as such was hard to live. To be honest, I was <seriously depressed>. Then the scarey thing happened. I had an appointment with my PCP who I have been seeing for twenty five years. Same Dr, same office, same small town....I drove past the clinic five times and could not find it!!! OMG!!! Now is dementia setting in?

    My mom had alzheimers disease. I fear this in a big way since I was her caretaker and was up and personal with this awful disease. She also had renal failure and congestive heart failure.

    Another follow up with my endo and the same old treatment or lack of. Went home, became irritated. Something else is wrong. Nobody becomes this ill without cause. I called the clinic and made an appointment to see a new Endo.

    My first meeting with him, I did not put the other Dr's down but suggested I needed a new set of eyes to look further in to my issues as I felt that if I was not diagnosed and treated, whatever was wrong with me was going to take hold and kill me at some point. As I stated above I am a multiple operated spine patient and most people who have half of the issues that I have are on strongest pain meds available and I take none. I deal with pain on a daily basis without drugs. This other issue compounded with the spine was getting to more then I could deal with both physically and emotionally.

    Thank God, I found an endo who saw me! He really saw me for who I was and he listened. Not only do I have issues above, I am a mom to two children with paraplegia, spina bifida. My medical experience as a lay person is extensive.
    This physician realized that rather quickly and he actually listened to me.

    The past couple of years my health went down even further. One day I woke up from a nap and suddenly could not breathe. It felt like trying to breath through a clogged coffee straw. The children called 911 and an ambulance came and rushed me with lights and sirens blaring to the hospital. By the time we arrived I was breathing again. No real checkup from the ER Dr. He released me telling me I had a panic attack. (LOL HERE) My husband took me home and I went back to bed feeling ill. Within hours I was asking my husband to take me to a different hospital, I did not think I would seriously make it through the night. He rushed me in. I lay on that examining table shaking coming down from a high fever. I was admitted and became an in patient for two weeks. My potassium and vitamen D were almost depleted. What I had experienced earlier was not a panic attack but in fact a pulomonary edema. I was one very sick woman. They could not figure out why I did not suffer kidney damage.

    Since that episode I never felt right. New Dr looked at my history and past medical issues of late and we started from scratch. Blood work first. TSH was .26 PTSH was 200. Calcium levels are high at 12.4 he immediatly starts tests to rule out cancer. Those all come back fine. Now we are on to test for parathyroid. YES He Said it! PARATHYROID!!!!!

    The signs of parathyroidism high PTH levels and low Vit D!!!!! I had all of the symptoms!!!! The next step a highly accurate Sestamibi scan to look for tumors in the glands. NEGATIVE SCAN!!!! (again lol here...highly accurate? don't count on it, as with all highly accurate tests the results all depend on the ability of the tech.)

    Now having a Dr who was not going to give up on me and already making a commitment to helping me did not stop. Next an ultrasound. This showed a single adenoma in my right upper parathyroid. He then spoke to the surgeons who relayed they would not do surgery based on my symptoms, condition and one adenoma being found.

    So he and the surgeons had another thought.

    Now we go on to my miracle that solved all of the problems. Cinacalcet used to treat hyperparathyroidism caused by chronic kidney disease or parathyroid cancer.Yes that's right! Cinacalet approved by the FDA for treatment of secondary hyperparathyroidism secondary to kidney failure for people on dialysis. Cost of twenty eight pills in the U.S. anywhere between $650.00 and $1,200.00. the cost is that high only because it is not approved for primary hyperparathyroidism. If it were, my cost would have been approx $10. Go figure. lol

    The drug company upon hearing of my demise donated the twenty eight pills to use as a diagnosis tool.

    By the time I took my 4th pill I had marked improvement of my symptoms. The bone pain was already more then 50% improved. Bowel issues were returning to normal by the end of the first week. By the second week, I had more energy then I had in years. I started to feel alive again, like maybe there was opportunity for me to live a more normal existence. I started to dread taking the last of those pills. They gave me my life back!!!!

    Two weeks after taking the last pill, all of the symptoms started to return. I saw my endo again. There was always the choice of remaining on this med however insurance companies won't pay for them because the meds are not approved for my condition. Nobody can afford to pay that for meds unelss you are very well off and in this day and age not many of us are anymore. So after he spoke with the surgeons about my WONDER DRUG, the plan for surgery was made.

    It would be exploratory. They knew top right had the tumor that scan did not pick up and wanted to be sure to get to the root of my problems. They went in. They found the tumor on top right, removed it and took PTH reading on the spot. PTH read 229. They explored more. Bottom right parathyroid, a large tumor. Removed it. Took blood again for PTH. It dropped to 24. They found it!!!! SUCCESSFUL SURGERY!!!!!!!

    I am seven days post op today. Bone pain is again almost 75% gone, bowel issues are almost normal, energy has returned, not sleeping all day,memory issues are all but absent, all symptoms are improving!!!

    Stitches come out today. Have a few issues with swelling and a golf ball size lump under the scar, most likely a hemotoma. Still have a sore throat. My surgery took over six hours. Yes he was thorough.

    Now I look back to my mom....She had been diagnosed with Alzheimers Disease, Congestive Heart Failure, Kidney Failure...These are all associated with untreated Hyperparathyroidism!!! Could she have had the same thing? Very possible. I mention this to all of you because, if your parent is showing signs of Dementia, it should be top priority to have their Vit D and calcium levels checked. It is a rare disease and mostly affects the older generation more so then the younger. Mid fifties seems to be the average age at diagnosis. But is it really that rare or is it often missed as it was in my case? I have had symptoms for over ten years now. My onset would have been in my 40's. You were all warned lol I said this would be long. But if it helps just one person, it is worth giving my input here.


    Last edited by Administrator; 02-19-2013 at 11:30 AM.

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    Old 02-19-2013, 06:32 PM   #2
    Junior Member
    Join Date: Feb 2013
    Location: Miami, FL
    Posts: 11
    Flip57 HB User
    Re: Misdiagnosed Graves Disease???? ( Hyperparathyroidism )

    Hi mom27,

    I am new to healthboards and am writing my first post. I am sorry to hear of all your past medical problems but am glad that you finally found out about hyperparathyroidism.

    With elevated calcium levels for the past ten years, I could not get any one of five different doctors to take it one step further. everyone took the wait and see attitude. finally this past fall I was referred to an endocrinologist who referred me to the Norman Parathyroid Center at Tampa General Hospital.
    There are four doctors on staff and the ONLY thing they do there is remove parathyroid tumors. they check all four glands during the surgery, removing those with tumors and doing biopsies on the dormant ones.

    I consulted with a local surgeon to see what's their procedure entailed.
    Then I pursued contacting the Center in Tampa. everything was done online, email and phone. After sending all my records, I had a phone consult with one of the four staff doctors. It was a no brainer for me. My surgery would take no more than 30 minutes, no general anesthesia, meds like one gets with a colonoscopy, I would be released In a few hours and could be driven home that same day.

    Everything went as planned. My surgery was 20 minutes long, they removed two glands and sent me home that afternoon. I had the golf ball swelling which totally disappeared in five weeks. My incision looks great and next week I get blood work to see the results of having the surgery, followed by an appointment with my endocrinologist to discuss further treatment. (Calcium supplements to treat my osteoporosis)

    My experience at the center was amazing! I should have done this at least five years ago. Go to their website, and learn. they say that about 60% of internists are not knowledgeable on this subject. From my experience, that is true. thank goodness I finally got the correct diagnosis. If you ever hear of friend or relative with elevated calcium...tell them to either see an endocrinologist or run to Tampa, immediately.

    I wish you continued better health and hope that my response will be helpful to others struggling with falling thru the medical cracks!

    Old 02-20-2013, 08:58 AM   #3
    Join Date: Jul 2012
    Location: chicago burbs
    Posts: 61
    kselibrary76 HB Userkselibrary76 HB User
    Re: Misdiagnosed Graves Disease???? ( Hyperparathyroidism )

    Reading this made my morning. I'm so glad for you. I have my surgery on Tuesday. I'm actually excited to get going on this.

    My bone pain (tibia) keeps me up all night. My muscles in the upper thigh and on the sides of the thigh are so tired all the time. Like I've run a marathon every single day. I itch. I'm tired of being tired.

    This gave me hope.

    5 years it took me to find a doctor to listen and when he did, he was proactive and really worked hard to help me ferret this all out.

    Thank you for posting every word of your story!

    Old 02-20-2013, 10:40 AM   #4
    Junior Member
    Join Date: Feb 2013
    Location: Miami, FL
    Posts: 11
    Flip57 HB User
    Re: Misdiagnosed Graves Disease???? (Hyperparathyroidism)

    Glad to be of help. Again, good luck.. I wish you well. Let me know the results of your surgery

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