top of page

This website could be a useful learning tool if you:

  • suspect you have Primary Hyperparathyroidism (PHPT) and need help to get a diagnosis.

  • have a diagnosis but are struggling to get a referral for surgery (Watch & Wait).

  • have had surgery and need post-operative care or advice to help with your recovery.

  • are a clinician/medical student looking to update/expand your knowledge of PHPT in all classifications; hypercalcaemic, normocalcaemic, normohormonal, biochemically normal.


We run two private Facebook groups: Hyperparathyroid UK Action4Change; strictly a patient-to-patient support group for patients and/or relatives. Follow this link to join. Note: Scroll down to answer both questions and agree to our T&Cs before submitting your request, or it will be automatically declined.  https://www.facebook.com/groups/HyperparathyroidUKAction4Change/ 

 

Our sister group HPT UK Medical is for medical practitioners keen to learn from patient experience and/or interact with members from our patient group. Please use the following link to join:

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

​

Our primary goals are to help PHPT patients by giving them correct advice (many have suffered medical gaslighting), and to help them secure a timely parathyroidectomy (the only cure), performed by experienced high volume parathyroid surgeons, and also to Action4Change. Clinicians should offer appropriate duty of care to parathyroid patients, yet so many fall short. If patients can learn about primary hyperparathyroidism, why can't clinicians?  PHPT is only complicated when you don't understand it. 

 

To patients; If your clinicians are confusing secondary HPT with primary HPT, please ask them to look at this site or conduct their own research. Their aim should be the same as ours, to get you healthy again. Living with PHPT year after year, is not achieving that goal. Watching and waiting for this degenerative disease to cause end-organ damage seems absurd to most people (because it is), not only for the serious harm it causes patients, but for the colossal waste of NHS resources which impact many hospital departments.

Doctors:- "You haven't fractured any bones yet, let's wait till you do."

or

      "You haven't got any kidney stones yet, let's wait till you do."


Us:-  That makes NO sense. Let's not wait, let's try to get you the help you need NOW...

Do not accept the following comments from doctors without finding out your exact levels. This advice can save you from a missed diagnosis.

  • 'your levels are normal'

  • 'your levels are within range'

  • 'your levels are not high enough to cause your symptoms'

Always know your exact blood results/ranges, i.e. (2.2 - 2.6). Get them written/printed for reference.  Some NHS Trusts top of the range for calcium is 2.5mmol/L.  

Many clinicians don't know how calcium and PTH influence each other.   If only they would understand the suppressive relationship of calcium and PTH to grasp that both levels found above mid range or near the top of the normal population reference range shows an inappropriate relationship, indicating PHPT. It really is that simple.

We all have a unique calcium/PTH 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 about the calcium/PTH relationship, and symptoms. Many clinicians also fail to consider that commonly prescribed medications, i.e. PPIs, steroids, metformin, HRT, bisphosphonates, or malabsorption conditions can reduce serum calcium and magnesium, which can lead to a mis/missed diagnosis. 

Copies of our leaflets (10 for £3 inc P&P) can be ordered from our contact page. All proceeds fund the upkeep of this site. Share them with your doctors. They have been well received by many clinicians, although one described them as a 'bit strident', much like this website, but they would have to experience being a hyperparathyroid patient to understand...

PHPT features overproduction of parathyroid hormone (PTH) secreted by parathyroid glands (usually 4), located around the thyroid in the neck. Overproduction doesn't always mean 'above range', it can simply mean that PTH doesn't switch off production when calcium reaches a set point, due to malfunction of one or more 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 a problem with parathyroid glands it is necessary to test PTH and calcium together. We also recommend testing vitamin D and magnesium as they also have a role in regulating PTH.

​

PHPT is a degenerative disease. Left untreated, it will cause detrimental life quality and end-organ damage, which does not occur at the same rate in all patients or according to the same levels, despite many doctors trying to convince their patients this is so.  It really isn't so.  Do not accept an unreasonably long 'watch and wait' approach, especially if you are already symptomatic. Exercise your right to a second opinion. Anxiety, depression, mood changes, asthenia (chronic fatigue), cognitive dysfunction, memory loss, bone loss (osteopenia/osteoporosis), bone pain, muscle fatigue, hair loss, dental decay, cysts or tumours elsewhere, kidney stones/gallstones, cardiac events, including sudden cardiac death, miscarriage, abdominal pain/symptoms, insomnia, general malaise, and feeling old, are all associated with PHPT.  If your GP or consultant says that your calcium is not high enough to cause your symptoms, they are quite mistaken. Please get a second opinion or Contact Us for advice. 

A missed/misdiagnosis is often the result of doctors or hospital labs refusing to test PTH when calcium is found within the population reference range. 

Surgical evidence of adenomas removed from patients with normocalcaemic PHPT can be found on our  case stories  page. Unless I'm mistaken, we've moved on from 1980. Not all hypercalcaemic hyperparathyroid patients will have high PTH (I've never had high PTH despite two parathyroidectomies, because I'm classed as normohormonal - SJP), and not all hyperparathyroid patients will have hypercalcaemia either.The sooner all doctors realise this, the sooner patients can get diagnosed and treated to stop clogging up waiting lists, A&E and hospital corridors...

Negative scans should never prevent a referral for surgery.

 

We see many people with negative scans who have large adenomas found during surgery, most often found in a typical location, although some are 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  or ask your clinicians to join our medical group to view our Gory Gallery (of multiple adenomas /enlarged glands) for themselves. 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'; 

https://www.nice.org.uk/guidance/ng132/chapter/Recommendations#referral-for-surgery 

PHPT is caused by a benign growth (adenoma) on one or more of the parathyroid glands. A single adenoma has always been reported to be most common, but we have seen many cases in recent years of two adenomas, and an increasing number of people with multiple enlarged glands. When all glands are affected, it is known as parathyroid hyperplasia. Most people have four parathyroid glands usually sited behind the thyroid gland in the neck. Some have extra glands (5 or 6) We've seen a few with seeding from previous parathyroid surgery. We've heard seeding can rarely occur from birth. We have seen 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. With all these eventualities, we believe parathyroid surgery should not be undertaken by surgeons without expertise. 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.

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 PHPT Details  and read our Case Stories. 

We see many people with recurring or persistent PHPT following a focused parathyroidectomy (removal of one gland), most often when surgeons relied on scans, or in patients with ectopic extra glands. 
Parathyroid hyperplasia is known to affect all glands  but not necessarily at the same time, and may or may not have a genetic cause. Some surgeons aim to locate all four glands during surgery. Many patients would prefer this option to prevent a prolonged battle for subsequent surgery if not cured first time. NICE guidelines recommend to offer a 4 gland exploration. Some surgeons choose to examine glands on one side, to 'eliminate the risk of scar tissue should a repeat surgery be needed'. We often see members with an adenoma found on both sides of the neck, which reinforces the issue of getting it right first time with 4 gland exploration, and highlights a merit of intraoperative PTH testing. 

Many of our members find supplements magnesium, vitamin D, and boron can offer some symptom relief before surgery and benefit bone remineralisation helping with hungry bone syndrome post op. K2 will also aid bone remineralisation.
 

The risk of having PHPT has always been reported to increase with age, but it is not uncommon for younger people to be affected, or for people to have had PHPT for several years before it becomes evident from symptoms or 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.  

If you suspect PHPT, what do you need from your doctor? - ​ Blood tests to include in the same blood draw:

CALCIUM  - adjusted automatically in response to albumin (calcium binding protein), Ionised calcium (if levels are borderline, would help with a diagnosis, although UK providers disagree (based on lab delays).

PTH - essential to be tested in a full EDTA vial to ensure accuracy; read why in PHPT - Details

VITAMIN D - active vitamin D would be a bonus, but very unlikely available.

MAGNESIUM - Your clinician will likely say it isn't necessary, but IT REALLY IS. Serum available mostly in UK, but RBC magnesium would be better.  Magnesium is lost in urine sooner than serum so please request  24 hour urinary magnesium.

Ultrasound/Sestamibi Scan of parathyroid glands by experienced radiologist/surgeon. Some areas offer 4DCT or Pet Choline scan which is preferable.

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 our recommended experienced  surgeons.
 

Your doctor will likely not know how to offer 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  well being 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)

     Magnesium 

We can't emphasise enough, the importance of magnesium for parathyroid patients, before and after surgery.  Magnesium is an essential cofactor when trying to raise vitamin D pre op, it's essential  post op when trying to prevent/increase a drop in calcium , its an essential partner to calcium for muscle function (obviously the heart is our biggest muscle). When presented with a patient with cardiac arrythmias, how many doctors check magnesium levels? Are the patients taking prescribed medications which reduce serum magnesium? Like omeprazole, or cinacalcet? It is essential to know that 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. To all clinicians, please research magnesium and the parathyroid before telling your patients they do not need magnesium tested or a magnesium supplement. We recommend magnesium glycinate or malate. 

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 magnesium.  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 patient or medical groups to gain knowledge from our years of research  and patient experience, which is available for all members to read. As always, please don't just take my word for it, but do your own research. Here is just one example of what you will find: 'Preoperative Low Serum Magnesium Level is a Significant Predictive Factor for Postoperative Hypomagnesemia in Patients Who Underwent Parathyroidectomy for Primary Hyperparathyroidism.'

 

https://cms.namikkemalmedj.com/Uploads/Article_51126/nkmj-10-53-En.pdf
 

Thousands of NHS appointments are clogging the system unnecessarily;

Endocrinology, rheumatology, urology, neurology, A&E, fracture clinics, GP surgeries, due to poor understanding of PHPT by clinicians.  This is especially typical for patients with nonclassical presentations of primary hyperparathyroidism, those with normocalcemic PHPT especially. An announcement was spread on social media by NHS England that from 01.11.23, those waiting more than fifty weeks for treatment with no appointment due within eight weeks, would get a phone call offering to transfer treatment elsewhere. Stay by your phones everyone!.. (but don't hold your breath).  Well here we are at the beginning of March 2024 and what happened? Nothing yet...

 

Normocalcaemic (NCPHPT) and Normohormonal (NHPHPT) are distinct biochemical presentations of PHPT.

Both require the same surgery as those with a classical presentation of elevated calcium and parathyroid hormone. If your clinicians are not up to date, please ask them to do some research (if we can find it, so can they) or seek a second opinion and consider contacting us.  Scroll down to the bottom of this page to read the statements from three surgeons who do recognise and operate on NCPHPT patients. You will find more on our Surgeons page.

 

Many doctors and endocrinologists fail to understand that symptoms, end organ damage; osteoporosis, kidney stones and cardiovascular disease (and of course death) can occur with normal levels of calcium and inappropriately paired PTH - NCPHPT. In our experience, many people with NCPHPT, are symptomatic having been undiagnosed/misdiagnosed for years after being told 'Your Calcium is not high enough to cause your symptoms'.  A referral to an experienced parathyroid surgeon who understands NCPHPT is recommended. Your GP can refer you directly to most surgeons for a second opinion removing the necessity to see an endocrinologist first.  Few endocrinologists seem able to differentiate between primary and secondary HPT. Many don't get hyperparathyroidism at all. We are mystified by their confusion, knowing that hormone regulation is supposedly their speciality. The reality is that many of them are diabeticians, masquerading as endocrinologists. If your GP refuses to refer directly, please contact us. It feels as though the Hippocratic Oath is no longer relevant.

Post-operative 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 in NG132 other than to get calcium tested yearly after surgery.  Many patients benefit from vitamin D and mineral supplements magnesium and boron, after surgery, especially in the first few days or weeks, for hungry bones or low calcium symptoms, even if blood levels are sufficient. Many will benefit from them for life. Who on earth would want this battle a second time? 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 3/4 post op calcium dip is common, or sooner for patients who experience a hefty post-op drop in calcium from high pre-op levels, who were taking cinacalcet until surgery, or those with low vitamin D and/or magnesium.  Dietary calcium, magnesium, boron, vitamin D, K2 (except if taking blood thinners, as a dose over 50mcg may interfere with your medication) supplements, hydration and rest (think two weeks convalescence) are important post-op for many, even if your mind has woken up and become active.

​

A third of patients will experience hypomagnesemia on day one post-op. We see people re-admitted to A&E on day two or three after surgery, requiring IV calcium and magnesium, which could have been prevented if clinicians were aware of a need for sufficient magnesium levels before surgery. Please read this and show it to your consultants;
 

 https://link.springer.com/article/10.1007/s00268-020-05425-#:~:text=This%20prospective%20study%20has%20demonstrated,%3C0.50%20mmol%2FL).

​

Any clinician who predicts their patients will not need magnesium post-op without actually knowing their levels, is talking nonsense.

​

Patients', please educate yourself about PHPT. Our site could be a useful aid to your diagnosis, journey to surgery, and beyond. Suggest and encourage your doctors to read this site to help you and other patients. Request a referral to a bone metabolism expert/endocrinologist on our recommended list, or directly to an experienced parathyroid surgeon for the only curative treatment (parathyroidectomy). It is often crucial to your care that your GP does not assume that all endocrinologists are bone metabolism experts.   Your doctor should refer you to appropriate secondary care consultants. Parathyroid surgeons who accept a direct referral from your GP can help you to avoid unnecessarily long waiting times for endocrinology appointments. You could find out this information by contacting the secretary of your chosen surgeon before asking for a referral, or asking our members if they might know.

​

Doctors, please update your knowledge of PHPT for the sake of your patients' wellbeing.  Many doctors are not up to date, which can cause long delays in diagnosis and treatment. Please read PHPT Details to learn about diagnosis, symptoms, secondary hyperparathyroidism, Normocalcemic PHPT, and Normohormonal PHPT.  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 a huge number of hyperparathyroid patients by producing a hypercalcemia guideline which was not what I campaigned for.  They offer no better advice than this site, but they are marginally better than no guidelines at all.  My attempts to get them revised sooner than originally planned  (2024) have all been refused.  https://www.nice.org.uk/guidance/NG132. A review is due in 2024.

Please note this information website is not manned daily but updated periodically. Use the contact page to email Sallie Powell or send a request to join us at our Facebook support group to interact with members. Recommended for everyone: Follow Dr Babak Larian to watch his monthly recorded live Q&A webcasts: http://www.hyperparathyroidmd.com/ 

Primary Hyperparathyroidism - Normocalcemic and Normohormonal classifications require the same cure: A parathyroidectomy performed by experienced parathyroid surgeons.

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.

I prepared the following statement for a planned press release in 2021, which of course didn't happen.

 

Who wants to talk about Primary Hyperparathyroidism? Nobody until they get it...

​

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 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 Normocalcaemic Primary Hyperparathyroidism that I've written three books about it, available on Amazon. Scroll down the page for links.
 

  • Most Doctors fail to understand the relationship between calcium and parathyroid hormone.

  • They only look for both being elevated, which is often not the case, and can lead to a missed diagnosis.

  • Calcium and PTH falling within the normal range does not necessarily mean you don't have PHPT.

  • It is vital to know where both levels fall within the normal range, looking for a non suppressive relationship.

Here are some examples to help doctors visualise and understand how PTH works in tandem with and to regulate calcium:

  • See-Saw

  • Heating thermostat

  • Spirit Level

  • Traditional Weighing Scales

  • Boiling Pan of Water

  • Automatic Kettle

  • Isaac Newton's Third Law of Motion

  • 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 their research: Growing numbers of people with a parathyroid adenoma will have calcium within the normal range and raised PTH. This is classed as Normocalcemic primary hyperparathyroidism (NCPHPT). We often see members who had a focused scan guided surgery often with high calcium, whose symptoms return. They are often normocalcemic and have a harder battle to be taken seriously the second time.  I don't believe normocalcemic is a new entity as it was discussed in medical studies dating back to 1969. Please do your research, join our groups or read the studies in 'A Normal Christmas' below. Read our case stories for positive post-op stories of people with NCPHPT. Here is one of many studies describing it as a new entitiy:  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3127400/ 

  • 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:  https://pubmed.ncbi.nlm.nih.gov/27866715/

  • People with recurring PHPT and multiple gland disease, who have been diagnosed with tumours elsewhere like pituitary or pancreas should be genetically tested for MEN. 

​​​​​

Matthew Ward (2023) - Consultant ENT Surgeon, Portsmouth Hospitals University NHS Trust;
 

"I've operated on several patients with significant symptoms and calcium levels in the mid to high normal range with an elevated PTH, and imaging showing abnormal parathyroid glands. They have improved symptomatically following surgery. Whilst the majority of patients with primary hyperparathyroidism do have elevated calcium levels, this is clearly not the case in all patients." 


https://www.finder.bupa.co.uk/Consultant/view/296829/dr_matthew_ward

Shad Khan (2021) - 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 we are increasingly seeing NCPHPT patients with quality of life dramatically improving following successful surgery "

Tarek Abdel-Azziz  (2022) - Consultant  Endocrine Surgeon, UCLH,  London.

I advocate surgery for normocalcaemic hyperparathyroidism,  especially if the patient is symptomatic or has underlying bone disease. Symptoms can be subtle and variable, and commonly present with fatigue or brain fog. 

Secondary Hyperparathyroidism

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

  • Celiac Disease

  • Crohn's Disease

  • 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 so much information about the need for magnesium when supplementing with vitamin or calcium: 
https://www.news-medical.net/news/20110615/Magnesium-essential-for-absorption-and-metabolism-of-vitamin-D-and-calcium.aspx 

Est. 02.09.2014

 Hyperparathyroid UK (HPT UK)

​

Action4Change

bottom of page