We hope our site will provide a valuable learning tool for people who suspect they have Primary Hyperparathyroidism (PHPT) and need assistance to obtain a diagnosis, or for people who have a diagnosis yet are struggling to be referred for surgery, and also for medical professionals who wish to improve their knowledge and understanding of PHPT in all its classifications.
We run two private Facebook community groups. Our main group is a patient to patient support group with over 2000 members. Please choose the following link if you are a patient or relative of a patient and wish to join our community, then scroll down to answer the three questions before submitting your request to join us: https://www.facebook.com/groups/HyperparathyroidUKAction4Change/
Our smaller sister group (over 450 members) is for medical practitioners with an interest in learning from patient experience and/or would like to interact with our main group members in a private setting.
Please follow this link to join; https://www.facebook.com/groups/309534823165675/?ref=bookmarks
PHPT is a common, yet under recognised and often poorly diagnosed endocrine condition, featuring the overproduction of parathyroid hormone (PTH) which is secreted by parathyroid glands. The role of parathyroid glands is to regulate and maintain the level of calcium in blood and bones. To determine an imbalance of calcium, it is necessary to test PTH and calcium together. Doctors must understand that both levels simply being within the normal range is not enough to rule out PHPT, but where in the range they fall.
PHPT is a progressive disease. Left untreated, it will eventually cause detrimental life quality and end organ damage. Do not accept a 'watch and wait' approach, exercise your right to a second opinion. Anxiety, depression, chronic fatigue, cognitive dysfunction, memory loss, mood changes, bone pain, muscle fatigue, hair loss, dental decay, cysts/tumours elsewhere, kidney stone/gallstones, osteopenia/osteoporosis, miscarriage, insomnia, general malaise and feeling old, are all symptoms of PHPT.
The level of calcium does not determine the severity of symptoms. If your consultant tells you your calcium is not high enough to cause your symptoms, they are quite mistaken. Please get a second opinion or Contact Us for advice.
PHPT is a benign growth (adenoma) on one or more of the parathyroid glands. A single adenoma is most common but we often see people with two or more adenomas or enlarged glands. We will add photographs to our gallery shortly.
We see too many people with recurring or persistent PHPT following a focused parathyroidectomy (removal of one gland) often by surgeons who rely on the results of a scan). They either experience returning symptoms or symptoms that don't resolve after surgery. Parathyroid hyperplasia is known to affect all glands and may or may not have a genetic cause. Whilst some surgeons will agree to locate all four glands during surgery, (NICE guidelines recommend to offer patients a 4 gland exploration), others will examine glands on one side, to eliminate the risk of scar tissue should a repeat surgery be needed. However, we have seen members with an adenoma found on both sides of the neck (pictures appearing in our gallery soon) which raises questions about getting it right first time with a 4 gland exploration, and/or the importance of intra operative PTH testing. Healthy glands should never be removed.
The majority of people are cured first time and go on to lead healthy lives. Some people recover at a quicker rate than others, possibly depending on the length of time before diagnosis, and also possibly depending on sufficient minerals and vitamin D. Symptom relief can take up to 12 months, sometimes longer, although most people report improvements quickly, with brain fog, bone pain and anxiety often reported to be the first symptoms to vanish.
Many find supplements of magnesium, vitamin D, K2 and boron can offer some symptom relief both before and after surgery. The risk of having PHPT is recorded to increase with age but it is not uncommon for younger people to be affected, or to have had PHPT for many years before it has become evident from symptoms or incidental blood results. Younger people with PHPT do have a greater chance of a genetic cause but this is not always the case. Please see our age survey on the PHPT Details Page and read our case stories.
Most people have four parathyroid glands usually sited behind the thyroid gland in the neck. Some have extra glands, seeding from previous parathyroid surgery, possible seeding from birth, ectopic glands in the thymus, thyroid, behind the carotid sheath, behind the collar bone, oesophagus, low in the chest or high in the neck (We've seen them all). A negative scan for a symptomatic or biochemically diagnosed patient should never prevent surgery. If you've been refused surgery on this basis, please contact us for advise on second opinions. Also age should never be a barrier to surgery, which is safe and curative in over 95% of cases for all ages. Please take a look at our Common Q&A's to read member feedback regarding age, negative scans, kidney stones, and broken bones/fractures. If you have been denied surgery based on age, please let us know. This is a UK study: 'Parathyroidectomy is safe and improves symptoms in elderly patients with PHPT': http://www.ncbi.nlm.nih.gov/pubmed/19222492
Thousands of NHS appointments are clogging the system unnecessarily (i.e; rheumatology, urology, neurology, A&E, fracture clinics) due to a poor understanding or recognition of PHPT, especially with non classic presentations. Many doctors and endocrinologists don't know symptoms can be caused with a normal level of calcium with an inappropriately elevated PTH (normocalcemic PHPT). In our experience many people with normocalcemic PHPT (NCPHPT), are very symptomatic having been undiagnosed/misdiagnosed for a long time after being told 'Your Calcium is not high enough to be causing your symptoms'. They are wrong. A referral to an experienced parathyroid surgeon is recommended. Your GP can refer your directly. If they refuse, please contact us.
Postoperative care and advice in the UK is virtually non existent at GP and Endocrine levels. The NICE guideline committee chose not to include any post op care advice. Many patients benefit from supplements after surgery, especially in the first few days or weeks, for hungry bones or low calcium symptoms, even if blood levels are sufficient. If a patient experiences tingling in hands, fingers, legs or face, they should not ignore these symptoms. Remineralisation of bones begins soon after surgery. Day 3 post op calcium crash is common especially in patients who have experienced a hefty post op drop in calcium from high pre op levels. Dietary calcium, magnesium, boron, vitamin D, K2 (except if taking blood thinners as a dose over 50mg may interfere with your medication), hydration and rest are very important the first few weeks post op, even if your mind is active. Some will not experience relief from increased dietary calcium and may need a calcium supplement in the first few days/weeks. A third of post op patients will experience hypomagnesemia on day 1 post op.
Normocalcemic (NCPHPT) PHPT and Normohormonal (NHPHPT) PHPT are biochemical presentations of PHPT requiring the same surgery as those with a classical presentation of elevated calcium and parathyroid hormone. Please read our case stories for evidence as well as links to medical studies and articles. If your medical provider is not up to date, please ask them to do some research, seek a second opinion or contact us. Please read the article on our next page; Hyperparathyroidism, How low can it go', written exclusively for us by Justin Morgan, Consultant General and Transplant Surgeon Medical Dean, University Hospital Bristol.
If you're a patient, please educate yourself about PHPT. If you're a doctor please update your knowledge pf PHPT for the sake of your patients wellbeing. Many doctors are not up to date, which can cause delays in diagnosis and treatment. Our site could be a useful aid to your diagnosis, journey to surgery and beyond. Please read our Home page to learn about diagnosis, symptoms, secondary hyperparathyroidism, Normocalcemic PHPT, Normohormonal PHPT and Multiple Endocrine Neoplasia (MEN) types 1, 2 and 4.
Please encourage your doctors and colleagues to read this site to help you and other patients. Request a referral to an experienced endocrinologist on our list or recommended by us, or directly to an experienced parathyroid surgeon for the only curative treatment (parathyroidectomy). Many parathyroid surgeons will accept a direct referral from your GP which will avoid the often unnecessarily long waiting times for endocrinology appointments.
About US has case stories detailing prolonged diagnosis/misdiagnosis and why we began our mission to raise awareness, and campaign for quality controlled NICE treatment guidelines in 2014, which were published on 23 May 2019: The guideline committee let us down with them. They were not what we asked for and offer no better advice than this site, but they are marginally better than no guidelines at all: https://www.nice.org.uk/guidance/NG132. we are hopeful they will be revised sooner than originally planned.
Please note this information website is not manned daily, but updated periodically. Use the contact page to contact Sallie Powell or send a request to join us at Facebook support group to interact with our members. Our main group is strictly a Patient to Patient support group only. Our medical group was created in 2018 for medical professionals or students who wish to interact with our members or learn from our experiences. You will be required to answer 3 automated questions about your reason for joining, how you heard about us and agree to read and abide by our ten simple rules before approval to our main group. Please note we will not approve blank profiles without validation. If you are new to Facebook or have a blank profile, please contact our moderators to validate your join request. This is all we require in return for invaluable support and advice. You are no longer alone with this disease. Please click the following link to join:
For Medical Professionals: Please request to join our sister group; HPT UK Medical on Facebook to interact with members:
Recommended for everyone: Please follow Dr Babak Larian and watch his monthly recorded live Q&A webcasts: http://www.hyperparathyroidmd.com/
Primary Hyperparathyroidism (PHPT) including normocalcemic and normohormonal classifications:
PHPT presents more commonly with elevated calcium and parathyroid hormone, but also often presents with the following classifications;
a) Elevated PTH and calcium within the normal population reference range, known as Normocalcemic PHPT (NCPHPT) or
b) Elevated calcium and PTH within the normal population reference range, known as Normohormonal PHPT (NHPHPT).
A common question is 'Can a doctor rule out PHPT if they do not test PTH with a concurrent calcium? The simple answer is No. It is crucial for doctors and hospital labs to accept PHPT can not be ruled out by looking at calcium levels alone. The usual reference range in the UK for calcium is (2.2-2.6)mmol/L. PHPT can be present with calcium of 2.4 upwards (in some cases even lower) which can be detected alongside an elevated PTH. Patients can suffer prolonged misdiagnosis impacting severely on their quality of life, on the basis their doctors or hospital labs did not test parathyroid hormone. Reasons given are calcium has to be greater than the top of the range for them to test PTH, or cost. We would ask them to compare the cost per person of a PTH blood test against decades of treatment for the consequences of untreated PHPT. We have seen NCPHPT referred to as 'mild PHPT' yet undiagnosed patients endure years of kidney stones, gall stones, bone pain, heart disease, osteoporosis, chronic fatigue, cognitive dysfunction, depression, anxiety and much more. What's mild about any of those symptoms?
We believe doctors ought to be aware of the cardiac risks to patients with elevated parathyroid hormone and vitamin D deficiency. Of course many 'slip the net' because 'nearly everybody has vitamin D deficiency so we don't test it'. Refusal to also test parathyroid hormone could have dire consequences for their patients. 'Recent studies have demonstrated greater risks of cardiovascular events and mortality among persons who have lower 25-hydroxyvitamin D(25-OH) and higher parathyroid hormone (PTH) levels': https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3337033/
The cure for all classifications of PHPT is the same; a parathyroidectomy performed by an experienced parathyroid surgeon. We have recommended surgeons you may wish to contact: Experienced Surgeons.