We recommend using this site as a learning tool if you suspect you have Primary Hyperparathyroidism (PHPT), need assistance to obtain a diagnosis, or if you have a diagnosis but are struggling to get a referral for surgery, or if you're a medical professional with a desire to improve your 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 2200+ members. Follow this link if you are a patient or relative of a patient and wish to join our community.

 

Please make sure you scroll down to answer all three questions before submitting your join request:  1. Why you want to join us 2. How you heard about us 3. Agree to our terms and conditions (or as Facebook call them; rules.

 https://www.facebook.com/groups/HyperparathyroidUKAction4Change/

 

Our sister group is for medical practitioners who are keen to learn from patient experience and/or would like to interact with group members in a private setting.  Follow this link to join; 

 

 https://www.facebook.com/groups/309534823165675/?ref=bookmarks

A statement by Sallie Powell

 

Primary Hyperparathyroidism (PHPT) is a complicated name for an extremely common, yet widely under recognised and misdiagnosed endocrine condition. Parathyroid glands regulate calcium in our blood in the same way a thermostat regulates temperature. When our blood calcium becomes too low, parathyroid glands stimulate the release of calcium from our bones to bring our calcium levels up.

When blood calcium becomes too high, the parathyroid glands stop stimulating the release of calcium from our bones. This perpetual motion occurs every day of our lives. If our boiler stops regulating temperature, we get it repaired. If our parathyroid glands stop regulating calcium, they need to be repaired also. Primary hyperparathyroidism occurs when one or more parathyroid glands continue to stimulate parathyroid hormone needlessly. This action causes both too much calcium in our blood, and too much calcium to be released from bones leading to osteopenia, then osteoporosis.

The effects of too much calcium in our blood begins to affect all areas of the body serviced by blood. Soft tissues can become calcified. Some people will form stones in their kidneys, most people will experience joint pain, cognitive dysfunction, overwhelming fatigue, anxiety, depression, insomnia and many other symptoms listed on our website. Some people will experience heart disease leading to cardiac arrest, strokes and sudden death. Not everybody experiences the same level of symptoms because the variance of blood calcium levels as well as the other variants like general health and fitness, diet, having other health conditions, and the length of time before treatment can impact the severity of this disease.

One of the most important messages we need to get across to doctors and endocrinologists; supposed to be experts in the field of endocrinology, whilst many are sadly lacking in their knowledge of PHPT; is that the level of calcium does not determine the severity of this disease.

People who have suffered a long time with unregulated calcium may only have a marginally raised calcium level, presenting with an inappropriate parathyroid hormone level, but have osteoporosis and kidney stones, whilst someone with a considerably high calcium level picked up quickly might have fewer symptoms, no kidney stones and healthier bone density.

I campaigned for NICE guidelines for Primary Hyperparathyroidism with the help of members of my support group Hyperparathyroid UK Action 4 Change. We were registered stakeholders, and committed many hours to public consultations, hoping they would make a difference to the diagnostic failings of our doctors. We were bitterly disappointed when we saw the draft scope, as many of our comments and the evidence we supplied were dismissed. The guideline appears to have been engineered to steer patients away from the NHS and towards private treatment, with their restrictive boundaries for surgery. We are often sickened to find endocrinologists using these guidelines to deflect patients and make them wait until their calcium reaches 2.85mmol/L, they have kidney stones or osteoporosis.

Many patients will suffer years of extremely debilitating health, lose their jobs, businesses, partners, families and friends, whilst they fall apart mentally and physically.

Sadly some will even lose their lives.

We currently have 2,225 members in our patient to patient support group. We have a medical group called HPT UK Medical where medical professionals or students can join, to learn and interact with our members, and our website hyperparathyroiduk.com is for non-members to use as a learning tool.

We need media attention to alert the public and the NHS to the plight of thousands who we estimate are suffering with PHPT, which their doctors have either missed or dismissed due to their misconceptions of the severity of PHPT with lower levels of calcium, or who have been misdiagnosed as having fibromyalgia. We believe from patient experience that many diagnosed with fibromyalgia might actually have primary hyperparathyroidism. It is essential they get their calcium, PTH, vitamin D and magnesium levels tested and that their doctors and hospital labs do not dismiss testing PTH in the presence of a normal calcium level. They must appreciate the severity of normocalcemic primary hyperparathyroidism (NCPHPT), its impact long term on their patients’ health, and that it should be treated in the same way as those with hypercalcaemic primary hyperparathyroidism.

Surgical removal of affected parathyroid glands by an experienced parathyroid surgeon is the only cure.

Sallie Powell

Founder of Hyperparathyroid UK Action4Change

PHPT is a common, yet under recognised and often poorly diagnosed endocrine condition, featuring over production of parathyroid hormone (PTH), which is secreted by parathyroid glands. Their role 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 is crucial. Please see new case stories with pictorial evidence of this. 
 

 PHPT is a progressive disease. Left untreated, it will eventually cause detrimental life quality and end-organ damage.  To patients; 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 associated with 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 see too many people with recurring or persistent PHPT following a focused parathyroidectomy (removal of one gland) often by surgeons who rely on scan results). 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 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 (Magnesium and boron) 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 advice 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

If you suspect Primary Hyperparathyroidism;  What happens next?

What do you need from your doctor?

  • A Blood test to include in the  same blood draw:

  • Serum calcium (which is adjusted by UK providers to reflect any abnormality in albumin; a calcium binding protein);

  • PTH ( essential to be tested in EDTA to ensure accuracy); please see below regarding the importance of EDTA for PTH).

  • Vitamin D, phosphorous and RBC Magnesium (if possible, although most will only test serum magnesium) ,  Ionised calcium if your levels are borderline, will help with a diagnosis, although many providers will not allow this test in the UK. 

  • Dexa bone density scan of hip, spine and non-dominant forearm as bone loss in the wrist cortex/distal third implicates PHPT.

  •  Ultrasound/sestamibi scan of parathyroid glands by an experienced radiologist. A negative scan does not mean you don't have an adenoma - see the article on negative scans on our Q&A's page. 

  • Referral to an experienced parathyroid surgeon. See our page for experienced and recommended surgeons.

  • Your doctor will likely need to educate themselves in preparation for your post-operative care and advice. This is so important as you will be discharged by your surgeon into their care. The NICE guideline committee decided not to include any guidance for post op care which we do not understand. Please join our Facebook group for post op guidance which we believe is crucial or your wellbeing in the first few days/weeks after surgery when your body will be dealing with a significant drop in calcium and a likely need for our recommended supplements (vitamin D, magnesium, boron and calcium). Lack of awareness and guidance can result in day 3 calcium crash, severe pins and needles and at worse tetany and temporary hypocalcemia requiring urgent medical attention.

Thousands of NHS appointments are clogging the system unnecessarily (i.e. rheumatology, urology, neurology, A&E, fracture clinics) mostly due to a poor understanding or recognition of PHPT, especially for patients with nonclassical presentations. Normocalcemic (NCPHPT) PHPT and Normohormonal (NHPHPT) PHPT are biochemical presentations of PHPT requiring the same surgery as those with a classical presentation of both elevated calcium and parathyroid hormone. If your medical provider is not up to date, please ask them to do some research, seek a second opinion or contact us.  Scroll down to the bottom of this page to read the statement about NCPHPT by Shad Khan, Consultant surgeon and Governor at Oxford Hospitals.

 

Many doctors and endocrinologists don't appreciate that symptoms can be caused with a normal level of calcium and 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'.  A referral to an experienced parathyroid surgeon who understands NCPHPT is recommended. Your GP can refer you directly to a surgeon for a second opinion. It is not necessary to see an endocrinologist first. If your GP refuses, 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 one post op. 

 

If you're a patient, please educate yourself about PHPT. If you're a doctor, please update your knowledge of 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 PHPT Details 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:  

https://www.facebook.com/groups/HyperparathyroidUKAction4Change/
 

For Medical Professionals: Please request to join our sister group; HPT UK Medical on Facebook to interact with members:  

https://www.facebook.com/groups/309534823165675/?ref=bookmarks


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 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 the 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.