Many Hypoparathyroidism Patients Would Consider Parathyroid Transplant, Survey Shows

Many Hypoparathyroidism Patients Would Consider Parathyroid Transplant, Survey Shows

Patients with hypoparathyroidism who experience severe symptoms and a low quality of life, despite receiving regular medication, would consider a parathyroid transplant as an appealing treatment option, a study has found.

The study, “Patients’ views about parathyroid transplantation for post-thyroidectomy hypoparathyroidism,” was published in the journal Langenbecks Archives of Surgery.

The most common cause of hypoparathyroidism is injury to the parathyroid glands during surgical removal of the thyroid, which can occur in up to 30 percent of the patients who undergo this type of surgery.

About a quarter of these patients will develop permanent hypoparathyroidism, even after being on treatment with oral calcium and vitamin D supplements. These supplements “cannot resolve all problematic aspects of the disease, such as abnormal bone remodeling” and lower quality of life, the researchers said.

Moreover, this type of treatment is associated with long-term complications, including kidney problems such as kidney stones, calcium deposits, and kidney impairments, cataracts, and brain calcifications.

The administration of parathyroid hormone (PTH) may normalize bone parameters, but there are no data about its benefits for the patients’ well-being.

A recent case report discussing a successful parathyroid transplant has, according to the study, “triggered renewed hopes” for many patients, including members of Hypopara UK, a U.K. patient support group for those living with a parathyroid condition. 

The report described the case of a woman with therapy-resistant hypoparathyroidism who underwent a successful allotransplant (the transplant of organs from a non-identical donor) of the two parathyroid glands in the forearm.

In addition to the few management options for those living with permanent hypoparathyroidism, little is known about the impact of the condition on quality of life.

Conducted by researchers at Oxford University Hospitals NHS Foundation Trust in the U.K., the present study was aimed at investigating patients’ views on the severity of their symptoms and the acceptability of a parathyroid transplant as a potential new treatment for hypoparathyroidism.

All registered members of HypoParaUK were asked to complete an online survey; 252 responded, and their answers were analyzed.

Most declared they experienced severe symptoms despite regular medical treatment, the most troublesome being fatigue, a low sense of well-being, and numbness and/or tingling. They also considered their quality of life low.

Only a few of these patients (4%) never felt excessively tired and numbness/tingling, while 30 to 35% had these symptoms nearly all the time.

Currently, there is no established technique or protocol for attempting a parathyroid transplant. Three possible scenarios, together with their feasibility and risk-benefits, were presented to patients: a less invasive technique consisting of an intramuscular (into the muscle) injection of parathyroid cells from a donor, which is potentially unreliable; or two different procedures where the parathyroid gland from a donor is surgically inserted into the patient’s forearm, with or without an intermediate step of cell growth in a patch of donor’s skin. The latter options are more reliable but likely require long-term use of immunosuppressants.

Patients were “aware that none of these treatments are available and their development would require extensive and timely clinical work,” the researchers stressed.

Almost half (44%) of the participants were extremely interested in the less invasive option of intramuscular injection of parathyroid cells from a donor.

Fewer patients (14%) showed interested in the other two more invasive procedures involving implantation of a parathyroid allograft into their forearm. Regarding those two transplant options, patients were mostly worried about the use of immunosuppressant medication.

However, two-thirds of patients volunteered to be involved in the future development of parathyroid transplantation, either by being potential candidates or by providing support to patients in a similar situation.

Most patients who responded to the survey experienced severe symptoms and had a low quality of life, revealing that some people with hypoparathyroidism “require a more radical and effective treatment,” according to the researchers.

Parathyroid transplantation is seen by these patients as an “attractive and acceptable therapeutic option,” warranting a future clinical trial “to explore its feasibility and success rate,” they concluded.

Ana is a molecular biologist enthusiastic about innovation and communication. In her role as a science writer she wishes to bring the advances in medical science and technology closer to the public, particularly to those most in need of them. Ana holds a PhD in Biomedical Sciences from the University of Lisbon, Portugal, where she focused her research on molecular biology, epigenetics and infectious diseases.
×
Ana is a molecular biologist enthusiastic about innovation and communication. In her role as a science writer she wishes to bring the advances in medical science and technology closer to the public, particularly to those most in need of them. Ana holds a PhD in Biomedical Sciences from the University of Lisbon, Portugal, where she focused her research on molecular biology, epigenetics and infectious diseases.
Latest Posts
  • patient survey
  • liver Wilson's disease
  • permanent hypoparathyroidism
  • dexamethasone

5 comments

  1. Kerrie Tahere says:

    I am in Australia and i would choose to have the implant done. Would love to hear more about this and outcome. Thank you

  2. Rosemary Fernandez says:

    This could be my lifesaver .
    I have hypoparathyroid and hycalcemia the bone pain gets worst everyday😪

  3. Beata Kiljan says:

    I was surprised to read the 12/19/18 article written by Ana Pena stating there are currently no established techniques for attempting parathyroid transplant. I had a live donor parathyroid transplant in September 2018 following a completely thyroidectomy in April 2012. I don’t believe the article was written with enough investigation into the subject. Yes, there are surgeons out there that do parathyroid transplants. Australian and German surgeons have been doing them for years.

    • Ana Pena says:

      Hi Beata,

      Thank you for reading our news and for your comment. I’ll do my best to answer it.

      The mentioned study was conducted by a team of researchers from Oxford University Hospitals NHS Foundation Trust, UK. In the report researchers wrote, referring to three possible techniques for a parathyroid allotransplant (from a non-identical donor): “Even though none of these techniques are in current clinical practice, three possible options were described together with their main potential advantages and disadvantages”.

      They also add: “Three possible scenarios for parathyroid transplantation were described in order to explore patients’ views about their feasibility and risk/benefit balance. They were aware that none of these treatments are available and their development would require extensive and timely clinical work.”

      Based on these and other remarks, I believe researchers wanted to highlight that this type of transplant is not a standard practice and there is no established, or standard, protocol for it yet. In fact, the authors pass the idea that only recently this approach has been attempted with success: “A recent case report of a 32-year-old female with intractable hypoPT who underwent successful allotransplantation of two parathyroid glands in the forearm triggered renewed hopes of many members of HypoParaUK group who find current treatment options unsatisfactory.” – referring to a case report from 2016, also mentioned in the news.

      You can access the original study covered by the story here or by clicking in the study’s title. I hope this explanation was useful and I hope you can continue to place your confidence in our news site. Kind regards, Ana

Leave a Comment

Your email address will not be published. Required fields are marked *