Hyperparathyroid UK (HPT UK)
Action 4 Change
It's Not All About the Levels
The level of calcium does NOT determine the severity of symptoms
Use this website as a learning tool if;
You suspect Primary Hyperparathyroidism (PHPT) and need help to get a diagnosis.
You have a diagnosis but are struggling to get a referral for surgery.
You have had surgery and need post-operative care or advice to help with your recovery.
You're a medical professional/student looking to improve your knowledge of PHPT in all classifications; hypercalcaemic, normocalcemic, normohormonal, biochemically normal PHPT.
We have two private Facebook community groups. Hyperparathyroid UK Action4Change, is strictly patient-to-patient only support group established in 2014, with over 3000 members. If you're a patient or relative, and wish to join our online community, use the following link to submit a join request; https://www.facebook.com/groups/HyperparathyroidUKAction4Change/
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Please read and agree to our terms and conditions.
Our sister group HPT UK Medical was created in 2018 for main group members and medical practitioners keen to learn from patient experience. Follow this link to join;
Our primary goal has and always will be remain to ensure all patients with primary hyperparathyroidism are offered a parathyroidectomy (the only cure), performed by experienced high volume parathyroid surgeons. We believe all clinicians have a responsibility to offer appropriate duty of care to parathyroid patients. Many are falling short of this responsibility. If parathyroid patients can learn about primary hyperparathyroidism, why can't clinicians?...
Always ask for your exact blood results and ranges (i.e. 2.2-2.6) This is so important.
If your clinician says;
'your levels are normal'
'your levels are within range'
'your levels are not high enough to cause your symptoms'
Do not accept the above comments without getting your exact levels. This advice can save you from missed diagnosis. Many clinicians fail to understand how PTH and calcium impact each other. Levels simply being within the normal range, does not exclude PHPT. If one or both levels are near the top of the normal population reference range, this is inappropriate and you could well have PHPT.
We all have a unique calcium set point.
Patients with a lower set point calcium of 2.25 can feel very unwell with a calcium level of 2.54, in the same way a person with a set point calcium of 2.50 can feel very unwell with a calcium level of 2.70. It's not all about the levels but very much about the calcium/PTH relationship, symptoms, and bone density.
Most clinicians fail to appreciate that many medications and certain conditions can reduce serum calcium and magnesium, which can lead to a missed diagnosis (obviously...)..
PHPT features overproduction of parathyroid hormone (PTH), secreted by parathyroid glands. Most people don't even know they have parathyroid glands until they begin to malfunction. The role of parathyroid glands is to regulate and maintain the level of calcium in our blood and bones. To determine an imbalance of calcium, it is necessary to test PTH and calcium together.
Doctors need to understand that both levels simply being within the normal range is not enough to rule out PHPT, but where both levels fall within or above the range is crucial. Misdiagnosis often occurs because doctors or hospital labs fail to test PTH when calcium is found within the top third of the population reference range. Please see case stories with pictorial evidence of this.
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 stones/gallstones, osteopenia/osteoporosis, miscarriage, insomnia, general malaise, and feeling old, are all associated with PHPT. PHPT is a degenerative disease. Left untreated, it will eventually cause detrimental life quality and end-organ damage.
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.
Negative scans should never prevent a referral for surgery. We've seen many people with negative scans who have had large adenomas found during surgery, more often found in a typical location, or ectopic.
Some clinicians believe negative scans indicate hyperplasia only, which isn't always true. See our section about negative scans on our Common Q&As page.
If you are refused a surgical referral based on negative scans, please quote NICE guidelines (NG132); 1.4; 1.4.4; 'Proceed with surgery, performed by a surgeon with expertise in 4‑gland exploration, even if preoperative imaging has not identified an adenoma';
PHPT is a benign growth (adenoma) on one or more of the parathyroid glands. A single adenoma has always been reported to be more common, but we have seen many cases in recent years of two adenomas, and an increasing number 0f people with multiple enlarged glands which is known as parathyroid hyperplasia. 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/within the carotid sheath, behind the collar bone, oesophagus, low in the chest or high in the neck. We've seen them all.
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 (but not necessarily at the same time) 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 many 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 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 has always been reported to increase with age but it is not uncommon for younger people to be affected, to have had PHPT for several years before it becomes evident from symptoms or even incidental blood results. 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
Younger people with PHPT do have a greater chance of a genetic cause but this is not always the case. In 2022, we have seen an increased number of teenagers diagnosed with primary hyperparathyroidism. Please see our age survey on the PHPT Details Page and read our case stories.
If you suspect Primary Hyperparathyroidism, What do you need from your doctor?
Blood test to include in the same blood draw:
Calcium - (adjusted automatically to reflect albumin levels; a calcium binding protein);
PTH (essential to be tested in EDTA to ensure accuracy; read why in PHPT - Details),
Magnesium (only serum available mostly in UK, but RBC would be better),
Ionised calcium (if levels are borderline, would help with a diagnosis, although UK providers disagree)
Ultrasound/Sestamibi Scan of parathyroid glands by experienced radiologist/surgeon. Some areas offer 4D Ct or pet Choline scan.
Dexa bone density scan (hip, spine and non-dominant forearm as bone loss in the wrist cortex/distal third implicates PHPT.)
Kidney scan (to look for stones )
Referral to an experienced parathyroid surgeon. See our page for experienced surgeons.
Your doctor will likely not know how to offer you post-operative care and advice even though you will be discharged into their care. We offer this service via our patient support group.
Realistically you will have to take charge of your own recovery, just as you had to take charge to get a diagnosis. The NICE guideline committee decided not to include any guidance for post op care which we don't understand. Please join our Facebook group for post-op guidance which we believe is crucial for your wellbeing in the first few days/weeks after surgery when your body could be dealing with a significant drop in calcium and a likely need for our recommended supplements (vitamin D, magnesium, boron, calcium). Lack of awareness and guidance can result in day 3/4 calcium crash, pins and needles, temporary hypocalcaemia/tetany requiring urgent medical attention. (worst case scenario)
We can't emphasise enough, the importance of magnesium for parathyroid patients, before and after surgery. Going into surgery with low magnesium increases the risk of hypomagnesemia on day one after surgery which can result in both low calcium and PTH and is known as 'The paradoxical block of PTH by hypomagnesemia.' Always ask for magnesium to be tested with calcium and PTH. Magnesium simply being somewhere within the normal range is not sufficient.
Serum magnesium only represents 1% of our magnesium. The remaining 99% is in our bones and cells where its needed. Nearly all parathyroid patients will benefit from supplementing with Mg malate or Mg glycinate.
Research magnesium and PHPT or join our groups to read our files.
This applies to both patients and clinicians: Please either do your own research or join our groups to gain knowledge from our research which is available for all members to read.
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. Our site could be a useful aid to your diagnosis, journey to surgery, and beyond.
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.
Please read PHPT Details page to learn about diagnosis, symptoms, secondary hyperparathyroidism, Normocalcemic PHPT, Normohormonal PHPT, and Multiple Endocrine Neoplasia (MEN) types 1, 2, and 4.
Encourage doctors to read this site help you and other patients. Request a referral to a bone metabolism expert/endocrinologist on our list or recommended by us, or directly to an experienced parathyroid surgeon for the only curative treatment (parathyroidectomy). Please do not let your primary care doctor assume all endocrinologists are bone metabolism experts. This is not so. Your doctor must refer you to appropriate secondary care consultants. Many parathyroid surgeons will accept a direct referral from your GP which can avoid unnecessarily long waiting times for endocrinology appointments. Please find out this information by contacting the secretary of your chosen surgery before asking for a referral.
About US has case stories detailing prolonged diagnosis/misdiagnosis and why I began a mission to raise awareness, and campaign for quality controlled NICE treatment guidelines in 2014, which were published on 23 May 2019: The guideline committee failed parathyroid patients and let us all 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. I will keep trying to get them 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 our 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:
Recommended for everyone: Please follow Dr Babak Larian and watch his monthly recorded live Q&A webcasts: http://www.hyperparathyroidmd.com/
Primary Hyperparathyroidism including normocalcemic and normohormonal classifications:
Different classifications equal the same cure: parathyroidectomy by an experienced parathyroid surgeon
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.
A statement by Sallie Powell - Founder of HPT UK
Primary Hyperparathyroidism 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 blood 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.
Left untreated, primary hyperparathyroidism begins to affect many areas of the body. 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 need media attention to alert the public and the NHS to the plight of thousands whom 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.
I feel so strongly about the misconception of normocalcemic PHPT, I wrote and published my second book 'It's Not All About the Levels' available now on Amazon;
It's Not All About the Levels: Normocalcaemic Primary HyperPARAthyroidism (NCPHPT): Amazon.co.uk: Powell, Sallie: 9798357345424: Books
Doctors mostly fail to recognise and understand the relationship between calcium and parathyroid hormone. Levels being 'within the normal range', does not mean you don't have PHPT. It is important to know where both levels fall within the normal range:
If you have high normal calcium and high normal or raised PTH, then you very likely have Primary Hyperparathyroidism.
If your calcium is high normal and you have symptoms, your doctor should retest with a corresponding PTH
If you have low calcium with raised PTH, you likely have Secondary Hyperparathyroidism. Your doctor must test your vitamin D (scroll down to the bottom of this page for more information).
This is where it gets complicated and needs a doctor to do his/her research: 20-25% of people with a parathyroid adenoma will have calcium within the normal range and raised PTH. This is classed as Normocalcemic primary hyperparathyroidism (NCPHPT). https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3127400/ Scroll down to the bottom of this page to read about NCPHPT. Please look at our case stories for positive post-op stories of people with NCPHPT.
22.5% of the primary hyperparathyroid population present with a raised blood calcium and a PTH level that is not above range but inappropriately detectable for its corresponding calcium level; This is classed as Normohormonal PHPT (NHPHPT). The following study explains that NHPHPT: http://www.medscape.com/medline/abstract/27866715
People with recurring PHPT, multiple gland disease, or who have been diagnosed with tumours elsewhere like pituitary or pancreas should be genetically tested for MEN. Please go to the next page to read the article written by Gill Masters (Amend UK MEN1 representative).
A statement from Mr Shad Khan - Consultant Endocrine and General Surgeon at Oxford University Hospitals:
'Normocalcaemic hyperparathyroidism (NCPHPT) is increasingly becoming accepted as a condition requiring surgical correction - much like primary hyperparathyroidism (PHPT).
In this variant, patients have an elevated parathyroid hormone level whilst displaying normal calcium levels in the blood. Nevertheless, there is a growing body of evidence that suggests that kidney stones, osteoporosis, and a multitude of symptoms found in the more conventional PHPT occur to the same extent in NCPHPT. Anecdotal evidence would suggest that a lot of benefits can be gained through surgical cure and there is growing concern about waiting until there is organ damage before offering surgery. Not many units are recognising this as yet but at Oxford, we are increasingly seeing and offering surgery for NCPHPT with quality of life dramatically improving following successful surgery'
Secondary Hyperparathyroidism is an overproduction of parathyroid hormone with a secondary cause rather than primary (adenoma), often in response to a DECREASED calcium and low vitamin D. As the four parathyroid glands only purpose is to maintain normal calcium levels, they will increase the production of parathyroid hormone (PTH) if calcium is LOW. Drugs such as bisphosphonates, anticonvulsants, furosemide, and phosphorus can cause elevated PTH. In addition to drugs, disorders such as renal hypercalciuria, chronic kidney disease (GFR <60 ml/min), malabsorption syndromes (celiac disease and cystic fibrosis), and vitamin D insufficiency with plasma 25-OH vitamin D levels of <50 nmol/L (<20 ng/mL) should be ruled out. Other considerations are hypoalbuminemia, hypomagnesemia, and elevated calcitonin. We are currently researching boron deficiency as a cause of elevated PTH as well as calcium.
Known causes of secondary Hyperparathyroidism are associated with poor absorption of calcium in the intestines:
Gastric Bypass (GBP)
Vitamin D Deficiency
Kidney Failure Requiring Dialysis
Some medications can interact with vitamin D supplementation such as steroids, (prednisone can reduce calcium absorption, impairing vitamin D metabolism), weight loss and cholesterol-reducing medications can reduce the absorption of vitamin D, and both phenobarbital and phenytoin used to treat epilepsy can reduce calcium absorption.
Supplementation of calcium and/or vitamin D without magnesium can lead to magnesium deficiency symptoms. High doses of vitamin D drains magnesium from its muscle storage sites. The first signs of magnesium deficiency are twitching, leg cramps, and restless legs. Angina and heart attacks affecting the heart muscle are magnesium deficiency symptoms. 600 mg of magnesium is recommended with 1/2000 IU of Vitamin D.
There is again so much information about the need for magnesium when supplementing with vitamin or calcium: