“I was living in fear, not fully understanding what was happening or what the future held, this was unacceptable, no clear explanation it was stressful, scary.” – PSI Patient, Elaine
Not knowing what the future held, and living with fear, after much time, Elaine had finally received a diagnosis.
Diagnosed with Hypoparathyroidism, a rare disease that affects 60-80,000 patients in the U.S. alone, Elaine was then told to get used to a new normal.
But what is Hypoparathyroidism and what are the symptoms?
What Is Hypoparathyroidism?
According to endocrineweb.com, Hypoparathyroidism is the combination of symptoms due to inadequate parathyroid hormone production. This is a very rare condition, and most commonly occurs because of damage to or removal of parathyroid glands at the time of parathyroid or thyroid surgery.
What Are Symptoms of Hypoparathyroidism?
Symptoms for Hypoparathyroidism can range from mild to severe. Elaine, in a letter she sent to us to share her story, shared with us what some of the symptoms for Hypoparathyroidism are, “Unless well controlled this condition causes muscle cramping, tetany, muscle twitches, impaired kidney function, body tingling and humming, seizures, heart arrhythmias, calcium deposits in the brain and cataracts.”
From Fear To A New Normal: Diagnosis
Elaine’s journey to diagnosis began at the age of 64 in May of 2014. In her own words, she writes about this life changing journey,
“My life changing journey started May 13, 2014 at the age of 64 with a total thyroidectomy due to indeterminate biopsies on large nodules both sides of the thyroid. I was told before surgery that the four parathyroid glands are extremely close to the thyroid sometimes within, very touchy to any disturbance, they would be extremely careful – the result was removal of one of the four glands along with the thyroid but I should recover just fine.
Long story short the 3 remaining parathyroid glands did not wake up, my calcium level in the hospital dropped to 6.4; I was released and told to take Tums and to increase the amount as needed along with 100 mg of a common thyroid medication, find an Endocrinologist.
My body cramped 3 or four times a day – terrible pain, internal humming was almost unbearable, could barely keep a thought in my head, it was foggy and oh so tired all the time. This was scary and extremely stressful.”
Waiting On A Next Appointment
Being told to take Tums, increase the amount as needed, as well as taking 100 mg of another drug, Elaine was now find an Endocrinologist. But finding one is one thing, waiting on the next appointment, is an entirely different thing.
Elaine continues, “I couldn’t get in to see an Endocrinologist for 3 months, during this time my Tums intake increased to 30,000 mg per day (I used a blender 3 x a day for smoothies). Still cramping but down to once a day, generally night time, internal humming awful especially at night, still tired and living in a fog.
Finally, first Endocrinologist appointment, she changed my Calcium Carbonate (Tums) to Calcium Citrate, 8,000 mg per day, added one 0.25 mg calcitriol kept my thyroid medication at 100 mg. sent me home, “have labs done in a week and I’ll see you in 6 months” – NO! Looked for a different Endo – took another 3 months, calcium & calcitriol the same, increased thyroid medication to 125 mg, “have labs done in a week I’ll see you in 6 months” NO, NO, NO!!! I was living in fear, not fully understanding what was happening or what the future held, this was unacceptable, no clear explanation it was stressful, scary.
The search for a third Endo, one knowledgeable in calcium issues was in the works. I contacted Dr. Joseph Shaker’s office an Endocrinologist with Froedtert Hospital & the Medical College of Wisconsin, his specialty is in calcium disorders. He could see me in 3 weeks, wow, really!!
At my first appointment he took my history, did lab work, and we sat down and talked, he informed me I had something called Hypoparathyroidism a very rare and life changing condition.”
A New Normal: Living With Hypoparathyroidism
Upon being diagnosed with Hypoparathyroidism, the doctor told Elaine to get used to a new normal as the plan now was to cut her calcium intake to 5,000 mg a day, one 0.25.mg calcitriol, decrease the other drug she had been on to 112 mcg, but then add Vitamin D3 plus magnesium daily.
Dr. Shaker then informed Elaine of a new medication that the FDA had just approved. He thought she was the perfect candidate.
“He asked if I had heard of this new medication, he seemed to think I was the perfect candidate. It had just been approved by the FDA in January 2015, and because my surgery was over 10 months before that and my parathyroid glands were dead, I should qualify.” Elaine tells us.
Aware of the new medication from doing her own research online, all that was needed would be to start the application process at her next appointment, which would give her time to think and read more about this new treatment.
Affording Treatment On A Fixed income
After taking some time to think more, Elaine was ready to try. But, as with most medications it seems, how can anyone, let alone those on fixed incomes ever afford treatment?
Elaine tells us what happens next, “I was ready to try. Everything moved fast. Dr. Shaker was already REMS certified to prescribe the medication. The prescription was extremely expensive, how would I afford this treatment? I now was 65 years old on a fixed income and on Medicare, my insurance was in place, Part D insurance told me I was accepted for this new medication and would pay X amount, the remaining amount would be out of pocket; a substantial part of my fixed income.
On inquiries to the pharmaceutical company for assistance I was told nothing was available to persons on Medicare, they suggested I apply for copay assistance programs.”
A Door Open To A Better Future
Is was then, when applying for copay assistance programs, that Elaine saw a door open for a better future.
“I found you – Patient Services Inc., I applied and was approved – thank you, thank you, I saw a door open to a better future.” Elaine shares in regard to finding Patient Services Incorporated.
With finding PSI, Elaine now had a shipment date set, training nurse scheduled and payment arrangements in order. She was excited to begin this new treatment.
Emergency Surgery Delays Treatment
Elaine was within weeks of starting this new medication to treat her Hypoparathyroidism when a major setback occurred. An unrelated medical problem arose that would require emergency surgery. This surgery then led to being the hospital for 22 days. Sadly, the medication for her rare disease would have to wait. But then, an additional surgery was needed, and the wait continued.
Needing to recover first from her surgery for at least a month before Elaine could start in this new medication, she was deeply disappointed.
Finally, three months after the new medication was to start, Elaine’s new life began on September 9, 2015 with this new treatment.
Three Years Later: A Life Prolonged
Three years later, Elaine’s life continues, thanks to this new medication and co-pay assistance from PSI.
“It has been nearly three years since I started this new treatment, plus I still need supplemental calcium, vitamin D and magnesium daily depending on my activity and stress levels.
With co-pay assistance from PSI, Inc. I am able to acquire the prescription I so desperately need to prolong my life! The daily stress level is reduced because I don’t have the worry of going medically bankrupt. This contributes substantially to my daily well-being. I can concentrate on managing my medications just to get through the day the best that I can.” Elaine states.
Health Care Charities Help Save Lives
Did you know that health care charities like PSI are under threat from the federal government? That’s right. And it’s leaving a lot of people just like Elaine left scratching their heads.
Elaine wanted to make sure we knew where she stood, “I am writing this to applaud PSI for their efforts in fund raising along with their donors to support patients with life threatening diseases. I don’t understand the political motivations to attack these fund-raising entities whose only intent is to help those struggling to pay for their life saving medications.”