ABOUT SALLIE POWELL Despite a childhood blighted with 3 marriages, numerous house moves, schools, and abuse; Sallie has always remained positive; believing life’s challenges made her stronger. At 18, Sallie backpacked around Australia, New Zealand and Hawaii – she was in complete control of her life and nothing could beat her. Even at age 26 a diagnosis of hypothyroidism didn’t slow her down. However, at age 32 after a mysterious illness, she woke up deaf one morning. She has been told this was a result of the nerve ends dying. This was the start of a long uphill battle to regain her health, with a parathyroidectomy at age 44 being the last in a series of 5 major surgeries. Primary Hyperparathyroidism DID beat her, but in the end, she fought back and won.
Now Sallie’s mission is to increase awareness of hyperparathyroidism and let people know they are not alone with their fight for a diagnosis. Support and guidance are available in an on-line FB support group she started – Hyperparathyroid UK Action4Change. Sallie has been campaigning for the UK Guidelines for diagnosis and treatment of primary hyperparathyroid disease to be updated. Furthermore, Sallie is working on book of poems, anecdotes and short stories she has written, as well as collected from others, who have also suffered needlessly. It is our privilege to collaborate with Sallie.
SALLIE’S STORY – 23 August 2015
After suffering the loss of 70 % of my hearing suddenly at the age of 33 and consequently having to leave my job as a technical administrator, sell my home and move to the City of Derby with my young son in 2000; when I was diagnosed with depression I logically assumed it was because of the traumatic transition in my life the previous 18 months. My relationship had broken down and I felt pretty low. I was prescribed Seroxat (paroxetine hydrochloride). I was also prescribed Ranitidine; a histamine 2 blocker to reduce stomach acid as I had also began to experience chronic heartburn. I had studied bookkeeping for a year and began to study Art, Design & Photography over 4 years. I took a year out from my studies in 2002 due to worsening depression and anxiety. I had also developed asthma due to black mould in my home and was rehoused.
When my course finished in July 2004, I attended a short business course, then set up a small photography studio in November 2004. I specialized in wedding photography and maintained an extremely busy schedule; in 14 months I photographed 49 weddings. 2005 passed in a blur. In 2006, I began to experience pains in my right knee. I thought it was an occupational hazard. It became so bad I couldn’t walk downstairs or get out of my car and I struggled to stand from a kneeling position; so I approached my doctors. While no root cause could be found, the pain became nearly constant and I developed a limp.
Around the same time, I experienced a medical emergency. I had to call 999 one evening due to crushing chest pains and paramedics rushed me to hospital suspecting a heart attack. I was released hours later after the pain subsided. I wasn’t informed that my blood calcium was 2.91. Note that normal range in the UK is designated as 2.25-2.5. I began to suffer extreme fatigue during the day; I was 38 and told, “Well you are nearly 40”. I kept asking myself, whatever happened to “life begins at 40?” Maybe it was sarcasm.
Following an arthroscopy in April 2007, I began to lose enthusiasm for my business. By October my fatigue was accompanied by a loss of confidence after I had accidently deleted a memory card of unsaved wedding photographs. I was distraught and took a part time job at an electrical store believing running my business had just become too much of a burden and the cause of work related anxiety.
I was offered full time work in January 2008, however my health continued to decline within 2 months, beginning with horrifying headaches and blurred vision. I was sent to the hospital with a suspected bleed to the brain in March 2008. Years later I found out I had a blood calcium of 2.91 (US conversion 11.66). Yet again, it wasn’t mentioned, nor followed up on. Instead, I was prescribed Amlopodine, a calcium channel blocker, and Bendroflumethiazide, a thiazide diuretic, for high blood pressure. Over the coming months I began to experience mood changes; becoming quick to anger, getting involved in arguments with colleagues, my patience was very short and my memory was a little fuzzy. I sometimes became confused at the till but made light of it.
In 2009 two colleagues and I lost our jobs but appealed and were reinstated. The atmosphere was stressful but I gritted my teeth and I tried to smile through it. I became emotional, my fatigue got a lot worse and I was constantly thirsty and needing to pee. I asked my doctor if I could be diabetic. He said “no” and blamed the stresses of work. My stomach started to swell and I suffered horrendous pain before menstruation and menorrhagia. I began to get severe pain in the base of my thumbs and cramps in my fingers. More trips to my doctors and I started to get the feeling they considered me to be a hypochondriac – they suggested I join a gym, and kept asking me to complete forms for depression which included questions like, “how often did I have suicidal thoughts?” The answer was “never” – I just had pain in my hands, blurred vision, headaches, chronic thirst, a swollen abdomen and very painful periods!
By September 2009 I had joined a gym and lost weight, but still suffered from all the above symptoms. My stomach resembled a full term pregnancy and I was convinced something horrible was growing inside me and slowly killing me. I begged for a scan. It revealed fibroids and ‘at my age’, the only solution was a hysterectomy.
I had to wait until 11 March, 2010 for the surgery and it couldn’t come quick enough because I felt desperately ill by this time. I had put on the weight I had lost and was so tired I could barely stand. My back ached, my ribs hurt, and I had terrible confusion and insomnia. I fully expected the hysterectomy would be the cure.
My five day stay in the hospital was a horror story from start to finish. No one realized I had undiagnosed Hyperparathyroidism and Type 2 Diabetes and due to an intolerance of food was given IV dextrose. (Later in 2010 the Diabetes was finally diagnosed and is controlled through diet, though I suspect taking bendroflumethiazide was making me sugar intolerant.) The 2nd day after discharge I developed a hematoma on my incision site. I felt worse than ever and could barely walk. My fatigue increased as did the pain in my joints. I didn’t feel able to return to work and took 16 weeks off losing 4 weeks wages. My abdomen was still massively swollen. My memory was terrible and I still had blurred vision and headaches. I wrote to my gynaecologist asking if he may have missed a fibroid. I was informed 5 months post op that I had actually had adenomyosis. My doctor told me I had fatty liver, high cholesterol and calcification in my kidneys, but shook his head and said ‘I don’t think so’ when I asked if all my ongoing symptoms could be linked.
I changed doctors and told my new doctor all of my symptoms, expressing my distress at the pain in my hands and my right knee that had returned. I developed red spots in my fingernails and experienced painful purple swelling in my finger tips following by white numbness. I couldn’t breathe through one nostril and I felt hopeless. My new doctor told me, “Sallie, I think you are depressed. You need to get over your hysterectomy and move on”. I consulted other doctors about the pain in my hands and my fatigue. My thyroid meds were increased, then decreased and I was given Amitriptyline for insomnia (a tricyclic antidepressant used for mental disorders including major depression, bipolar, anxiety, less commonly for fibromyalgia, and insomnia) and glucosamine sulphate for my joints.
In June 2011 I saw yet another doctor who tested me for rheumatoid arthritis. Finally a result from the hospital revealed hypercalcemia at 2.77 (U.S. conversation 11.10) and a retest with pth was requested which I only recently found out came back at 48. My pth was never discussed by my doctors. I was told to go back to my usual doctor who had been dismissing my symptoms for the last year and had told me just to “get over my hysterectomy”. Out of desperation and feeling she would dismiss me again, I decided to consult ‘Dr Google’ about elevated calcium and was directed to parathyroid.com which I read from start to finish. I knew I had Primary Hyperparathyroidism.
I printed relevant pages and took them to my doctor. I convinced her to refer me to an endocrinologist and in September 2011 my diagnosis was confirmed; I was referred for scans and to a general surgeon. When his consultant started to draw me a diagram of the parathyroid glands, I told him I had studied parathyroid.com and knew as much as I needed to and simply wanted to know how soon could I have surgery? When he wrote to me saying my calcium wasn’t high enough at 2.82 (US conversion 11.30) I consulted another doctor within the practice who knew of several patients that had failed parathyroid surgeries. He promised to find me a good parathyroid surgeon and referred me to Mr Barney Harrison a parathyroid surgeon and the president of BAETS in another city; Sheffield. I saw Mr Harrison in December 2011. My doctor had told me in September 2011 to remove calcium from my diet completely saying I had too much already. Mr Harrison told me that I should in fact keep calcium in my diet. I had a 795 mg adenoma removed 1 June 2012. I got my life back that day. I woke from surgery feeling happy for the first time in 7 years. I felt like I had woken up on a beautiful sunny day feeling refreshed and clear headed. My hands didn’t hurt. My feet didn’t hurt. I experienced pins and needles in my fingers and hands and was given a glass of milk. Within hours of my surgery I was up, dressed and going for a brisk walk around the hospital. I felt brilliant. I was cured. I went out to celebrate the same night and out for dinner the next day. I couldn’t wipe the smile off my face or stop talking.
At that point I had only spoken to one other lady with hyperparathyroidism. I began to search online for others. Gradually over the next two years I found thousands. I set up a support group called Hyperparathyroid UK Action4Change. I know what it is like to feel totally alone with this disease year after year and I am campaigning to get UK guidelines updated so that others do not have to continue to suffer the degradation of their doctors and hospitals treating them like hypochondriacs, when the reality is that they have a parathyroid adenoma sucking the life out of them…literally. On Saturday 22 August 2015 I travelled to London to meet 8 other people at various stages of hyperparathyroidism. Friends for life… we have a special bond that only other people with this disease can understand. I will continue to support my members and to fight for changes in the way this disease is diagnosed and treated. I am grateful every day for parathyroid.com. It saved my life.
For more information visit Sallie’s blogspot.