Nola has a tragic story about the failure of her doctors to understand that the removal of her thyroid glands also resulted in the loss of her parathyroid glands, which in turn caused her great problems.
Eight years ago, I was diagnosed with hypothyroidism and with a nodule on my thyroid. They were unable to biopsy it because of its location. In order to biopsy it, they would have had to pass the needle through my jugular vein and carotid artery. The doctor explained that the likelihood of cancer was so low, it was not worth the risk of having to have major surgery just to get the biopsy.
Five years ago, my thyroid grew so large that it was pressing against my voice box and trachea. So my thyroid was removed. Post surgery, my calcium levels were within range, yet the same afternoon I was released, I began to have the numbness associated with low calcium levels. I contacted the doctors office and was told to come in. My doctor had left town to pick his son up in Scotland and was out of the country. His associates put me on massive doses of calcium and vitamin D.
The next day things continued to get worse. My muscles started contracting and spasming and the numbness spread over more of my body. The doctors told me to eat 6 TUMs every 15 minutes to try to raise my calcium level. Nothing was working. That afternoon, my surgeon called from Scotland to let me know that he had personally made an appointment with my Endocrinologist just to check to see what the problem was. By the time I got into the doctors office the next day I could hardly walk. The endocrinologist, who was not a personable man, took one look at me and said you have cancer. He took my blood and the next day I was put into the hospital. My calcium level was below 5. They put a PICC line in and I was in the hospital for a week.
While in the hospital, several internists who came in to determine what they could do for me. I felt like a science experiment as they tried to give me various combinations of vitamins and minerals to try to bind with the calcium and get it to work. I was sent home with a calcium level that had finally reached 9. Saw my endocrinologist every few days and he continued to take my blood work. My levels continued to drop in spite of the amount of vitamins and minerals such as calcium and vitamin D that he continued to prescribe. Within a week I could hardly walk at all. I was being pumped with so much calcium that when the blood work was taken the calcium levels showed that they were normal. I continued to become more and more numb and unable to walk.
At this point, my parathyroid levels were still below zero–not where they should be. My endocrinologist accused me of not taking my medications properly to avoid going to work!! I was also unable to have any treatment for the cancer because they would have had to take me off all my thyroid and other medications. I felt like I was going crazy. I knew something was wrong but yet my doctor was accusing me of causing it.
I went to my own regular general practice doctor in tears and begged him to help me. He had known me and worked with me for over 20 years. I even went to see a therapist thinking that maybe it was all in my mind. I had known this therapist for years also as a friend who also knew me. My doctor recommended another endocrinologist. I was only able to get in to a nurse practitioner at that clinic but as it was the next day I accepted. When the nurse practitioner took one look at me, he pulled in all of the endocrinologists in the office and they spent an hour examining me. They personally called a neurologist for me to immediately see.
The neurologist took 23 blood samples and did 4 MRIs on my spine and brain. He knew something was wrong. The radiologist who did my MRI on two different occasions indicated he thought I had rapid onset Multiple Schlerosis–simply because of the way I walked and how my muscles were underperforming. But the MRIs came back negative. The Neurologist indicated that he needed to do a nerve conduction test. In the middle of one application, I felt such intense pain that it literally felt like a bolt of lightning had shuddered through my entire body. I screamed out in pain. Within 3 hours I was unable to speak. At that point the neurologist and the endocrinologist had no idea what was going on.
The following week when I returned, he made an appointment for me with a doctor at the University of Utah Medical School’s physical and medical rehabilitation office. The doctor there tried to tell me that I had undergone such stress that my body had shut down. Again, it was about “me” and I felt tormented. My parathyroid level was still below zero. The only one who noted this was my endocrinologist. He, however, never did a thing about it!
I spent hours trying to look on the computer for anything that would give me any sign of help. I was walking with a cane, couldn’t talk well and literally unable to function. I finally discovered myself the connection to my parathyroid glands. Sadly, though I got my doctor to accept the parathyroid connection, he really didn’t do much more about it.
I continued to see the head doctor at the Medical School. He at least was willing to accept what might be happening to me although he continued to push that this must be something in “me”—emotional. I followed his advice and began to swim everyday and had quite a few self-taught vocal exercises to try to reprogram my brain to heal itself. Several systems in my body were damaged. The routes from my brain to my body that allowed me to walk, talk, type and think, as well as my body thermostat, were damaged. I had had experience as a young girl with a child in our neighborhood who had been born brain damaged. His parents had been to Philadelphia and we in the neighborhood helped his parents with what they called at that time “patterning”. I knew this was what I needed to do. I discussed this with the specialist at the Medical School and he seemed to think that this made sense. At least he was willing to think that maybe this wasn’t all in my head.
By this time it had been long enough that I was able to apply for Social Security disability. I had been a single parent for 15 years and had no source of income. I was unable to work. I was immediately accepted, which was a miracle because up until that point, there really was no definite opinion as to what was wrong. The terms hypoparathyroidism and hypocalcemia were submitted.
After a year, my speech had improved somewhat, although with a thick accent which was later determined to appear to be Russian. I searched out everything that I could on foreign language syndrome. This was something that I stumbled upon through a news program. Again it appeared this was something that was caused by “mental issues” according to the experts and my doctor. And all this time, I still have never been able to be treated for my “cancer”.
I continue to work very hard with my walking and my talking on my own. For the most part I am able to walk and talk normally again after 5 years. I am NOT able to work full time however and have had to become self-employed because of my continuing health issues. Last year my calcium levels without warning skyrocketed and I was placed in intensive care once again. There was no known reason for this. I continue on what my pharmacist calls toxic levels of my medications just to stay alive. A 24 hour urine test several years ago indicated that everything I was taking was just passing through my body and not being used. I wish that I would have had the support that I have now found on this site and another site that I have found I am NOT crazy.
Bottom line: These are real things that most doctors ignore because they don’t understand and have never taken the time to research and understand. I live in fear everyday that my only source of income my disability will be taken from me. I still have the stigma as having complications from emotional issues. I was told by several medical areas that any classification of problems with the brain whether physical or mental are all lumped together. My inability to allow the impulses from my brain to the other parts of my body have been classified as mental. This is wrong !!!!!