Hyperparathyroid UK (HPT UK)
Action4Change
HPT UK A4C
It's Not
All About the Levels
Est. 02.09.2014
It's Not All About the Levels...
Our website could be helpful if you:
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suspect Primary Hyperparathyroidism (PHPT) and need help to get a diagnosis.
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have a diagnosis but are struggling to get a referral for surgery (Watch & Wait).
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have had surgery and need post-operative care/advice to help with recovery.
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are a clinician or medical student looking to update/expand your knowledge of PHPT in all classifications; hypercalcaemic, normocalcaemic, normohormonal, biochemically normal.
Most clinicians (including endocrinologists) don't understand how calcium & PTH influence each other.
Levels within the population reference range don't automatically exclude PHPT. Clinicians should know to look for an appropriate suppressive relationship between calcium and PTH. Both levels found near the top of their ranges show an inappropriate non suppressive relationship, which indicates PHPT. It's really that simple. It is important to look for low vitamin D and magnesium levels. PHPT can't be ruled out by looking at calcium levels alone.
We all have a unique calcium/PTH set point. Patients with a lower set point calcium of 2.25 can feel very unwell with calcium at 2.54, and an inappropriate corresponding PTH (non suppressed), in the same way a person with a set point calcium of 2.45 can feel very unwell with a calcium level of 2.65. It's not all about calcium levels, but very much about the calcium and PTH relationship.
Many clinicians fail to consider that commonly prescribed medications, i.e. PPIs, steroids, metformin, HRT, bisphosphonates, and malabsorption conditions can reduce serum calcium and magnesium, which can lead to a missed/misdiagnosis.
Please do NOT request to become a member of this information website. Join our private Facebook group to interact with other patients. Our case stories show benefits of talking to others who understand,
Hyperparathyroid UK Action 4 Change - patient support group for patients & relatives Follow this link:
https://www.facebook.com/groups/HyperparathyroidUKAction4Change/
HPT UK Medical - For clinicians keen to learn from patient experience. View surgical evidence images, including many from NCPHPT patients, in the Gory Galleries Albums.
https://www.facebook.com/groups/309534823165675/?ref=bookmarks
To avoid a missed/misdiagnosis, ask for your exact levels. Do not accept these comments from doctors:
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Your levels are normal.
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Your levels are within range.
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Your levels aren't high enough to cause your symptoms.
Ask for reference ranges. i.e. (2.2-2.6) Variations at some NHS Trusts, i.e. top of the calcium range is 2.5 mmol/L.
Bonkers medical logic
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You haven't fractured any bones, let's wait till you do.
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You don't have kidney stones, let's wait till you do.
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We've doubled the PTH range and your PTH now needs to be above the top of the new range.
Which makes NO sense. Let's not wait, let's try to get you the help you need NOW to prevent inevitable bone loss, kidney stones and cardiovascular disease. There are so many population based studies about cardiovascular consequences of PHPT.
Hospital labs often refuse to test PTH if calcium is within the reference range.
A PTH test costs £8-10. Bone profile tests cost £0.79. Compare £10 against strokes, heart attacks, kidney stones, gall stones, fractures, sudden cardiac death & prostate cancer, all linked to high PTH. How does avoiding the cost of a PTH test save the NHS money?
Not all hyperparathyroid patients will have hypercalcaemia. but many with normocalcaemia will have elevated PTH, which increases CVD and prostate cancer risks, two very good reasons against avoiding a £10 cost, plus increased risks of gallstones, dementia and sudden cardiac death.
Our Primary Goals.
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To offer up to date, accurate advice and support to PHPT patients, unlike the advice from 1980 offered by many doctors and endocrinologists.
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To help PHPT patients secure a timely diagnosis and cure; a parathyroidectomy, performed by experienced parathyroid surgeons. We see far too many failed surgeries performed by inexperienced surgeons.
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To continue to action for much needed change.
Many clinicians fall short of offering appropriate duty of care to hyperparathyroid patients due to outdated knowledge of PHPT. Many patients know more about PHPT than their doctors. This is not a choice but a necessity. We all wish we could place our trust in our doctors.
PHPT is only complicated if you don't understand it.
The parathyroid is NOT the thyroid, yet many patients have to correct clinicians on this astonishing misunderstanding. A recent example was found in the consultation comment responses from NICE expert committee on the updated Menopause guideline NG32 (published 07/11/24). The committee confused primary hyperparathyroidism with hyper and hypothyroidism, suggesting thyroid function tests might be recommended in future in response to our comments about PHPT.
If your clinicians confuse thyroid with parathyroid, or secondary with primary Hyperparathyroidism, please ask them to read this website. Their goal should be the same as ours, to get you healthy again. Forced to exist year after year with PHPT not only fails to achieve that goal, but increases risks of harm. 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 the colossal waste of NHS resources impacting many hospital departments flailing aimlessly to cope with patients who have untreated/undiagnosed PHPT.
The role of parathyroid glands is to regulate and maintai the level of calcium in blood and bones. PHPT features over production of parathyroid hormone (PTH) secreted by parathyroid glands (usually 4), located behind the thyroid in the neck, resulting in failure to regulate calcium levels, often causing hypercalcemia.
Over stimulated PTH doesn't always mean 'above range', it can mean PTH doesn't switch off production when calcium reaches a set point, caused by malfunction of one or more glands. Most people don't even know they have parathyroid glands until they malfunction. To determine a problem with parathyroid glands it is necessary to test PTH and calcium together. We recommend testing vitamin D and magnesium because they both play a role in calcium homeostasis. Low vitamin D can stimulate over production of parathyroid hormone, so we always recommend aiming to get vitamin D into range with reasonable daily doses (1-3000 IU) after magnesium levels have been tested. D3 needs magnesium to convert to its 25[OH]D. Doctors prescribing huge doses of D3 wouldn't drive 100 miles on an empty tank, would they?
Symptoms - PHPT is a degenerative disease. Left untreated, it will eventually cause detrimental life quality and end-organ damage, which doesn't occur at the same rate in all patients or according to the same levels, despite many doctors trying to convince patients otherwise. Do not accept the unfathomable 'Watch and Wait' approach, especially if you're already symptomatic. Insist on a second opinion and choose wisely based on patient recommendations.
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. The NICE guideline committee were aware of many of these symptoms, but chose to note only constipation, excessive thirst, osteoporosis & kidney stones in the main body of their guideline NG132. The NHS website lists more symptoms. If your GP or consultant says your calcium is not high enough to cause your symptoms, ask them to look at the NHS website.
A new initiative from NHS England for 2025 to drive down waiting times is that GPs can now request tests and scans without having to refer to a consultant. We are hope GPs will begin to see patients cured much quicker after requesting scans and 24 hour urinary calcium excretion tests to help patients avoid endless waiting times to see endocrinologists which will reduce their workload. We firmly believe this is a long overdue and very important, positive change for everyone (except endocrinologists maybe).
Negative scans should not prevent surgery if a biochemical diagnosis is confirmed.
Many with negative scans have had large adenomas found during surgery, most often found in a typical location, sometimes ectopic. Some clinicians believe negative scans indicate hyperplasia only, which isn't always true. Read about negative scans on 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
Scans of parathyroid glands should be performed by experienced radiologists, to guide the surgeon. They are not diagnostic. Usually ultrasound and sestamibi nuclear scans. Many Sestamibi scans are negative because of a prolonged delay before the first image. Some areas offer 4DCT, or Pet Choline scan, which is preferable. If your surgeon will not operate because of negative scans, ask to be referred to a surgeon who will. If your surgeon refuses to locate all glands please ask why. If a surgeon insists an exploratory surgery is not necessary. Ask if they test PTH intraoperatively and at what interval after removing the adenoma seen on scans.
Request:
Dexa bone density scan (hip, spine & non-dominant forearm, as bone loss in the wrist cortex/distal third is common with PHPT).
Kidney scan (to look for kidney stones).
Referral to an experienced parathyroid surgeon. See our page for our recommended experienced surgeons.
Healthy glands should never be intentionally/routinely removed. We know of one NHS Trust who routinely remove healthy glands. A freedom of information request revealed an astonishing number of healthy glands removed 2018 - 2023. They wrongly believe PHPT is strictly a one or four gland disease, and insist on a unilateral exploration, removing both glands routinely, which can result in patients remaining uncured having had a healthy gland removed. We're aware of them removing 3.5 healthy glands. Consequently we try to steer our members away from this Trust.
PHPT is caused by a benign growth (adenoma) on one or more parathyroid glands. A single adenoma is reported to be most common. We've seen many cases in recent years of two adenomas, and increasing numbers of people with multiple enlarged glands, known as parathyroid hyperplasia, which affects all glands not necessarily at the same time, which may have a genetic cause, but not always, i.e. radiotherapy or lithium are examples of medicinal causes.
Whilst most people have four parathyroid glands, we've seen people who've had extra glands (5 or 6), and also several with seeding (parathyromatosis) from previous parathyroid surgery. Seeding can rarely occur from birth. We've seen ectopic glands in the thymus, thyroid, carotid sheath, behind the collar bone, oesophagus, jaw, 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.
Those cured first time, go on to lead healthy lives. Some recover at a quicker rate than others, possibly depending on the length of time before diagnosis, and pre op health, and also depending on sufficient ongoing minerals (calcium, magnesium and boron) and vitamin D. Given that many begin their parathyroid nightmare with low vitamin D, it makes sense to maintain good levels after surgery, to prevent a recurrence of PHPT. Symptom relief for some can take up to 12 months, sometimes longer, though most people report significant improvements quickly, with brain fog, bone pain, anxiety, and blurred vision often reported to be the first symptoms to vanish.
Many of our members find that supplementing magnesium, vitamin D, and boron before surgery can offer some symptom relief, and help bone remineralisation and to prevent hungry bone syndrome post op. K2 (MK 7) will also help bone remineralisation ad help prevent/improve atherosclerosis.
Recurring or persistent PHPT often follows a focused parathyroidectomy by scan guided surgeons. Some patients have ectopic glands. Too few surgeons aim to locate all glands during surgery, often a preferred patient option to prevent a prolonged battle for subsequent surgery, if not cured the first time.
NICE guidelines recommend offering a 4-gland exploration to all patients, but advise against intraoperative PTH first time (save it for the second time, which might not have been needed if used the first time). We know IoPTH isn't widely available due to cost, but offering neither IoPTH or bilateral exploratory, is like rolling a dice. Some surgeons examine glands on one side, to 'eliminate the risk of scar tissue should a repeat surgery be needed', but we often see members who have an adenoma found on both sides of the neck, reinforcing the merit of offering a bilateral 4-gland exploration.
Younger people with PHPT have historically been deemed a greater chance of a genetic cause, but this is not always the case. The risk of having PHPT has always been reported to increase with age, but it is becoming much more common for younger people to be diagnosed.
Since 2021, we have seen increased numbers of teenagers as young as thirteen, diagnosed with PHPT with no genetic cause. They all had low vitamin D. We want to increase awareness of this. Please read our Case Stories.
Many people had PHPT for years before it became 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?
Four blood tests from the same blood draw, NOT on different days as we see often.
PHPT - The FULL Picture
Ca
PTH
Mg
Vit D
24 hour urinary Calcium/Mg
Calcium Adjusted in response to albumin
PTH Tested in a full EDTA vial
Vitamin D Low vitamin D can overstimulate PTH.
Magnesium essential role in calcium homeostasis
24 hour urinary calcium excretion
To see if excess calcium is being excreted via the kidneys. Useful when serum calcium is borderline but also to exclude FHH, if calcium is above 0.01.
Magnesium is lost in urine sooner than serum. Request 24 hour urinary magnesium with 24 hour urinary calcium excretion.
Primary Hyperparathyroidism - See the FULL diagnostic picture, rather than an incomplete segment.
A delayed diagnosis can be avoided by testing all components, and of course, understanding the results. We repeatedly have to ask, 'Did they test your PTH as well as calcium?' or 'Did they test your magnesium?' The answer is often no. Low vitamin D and/or magnesium can reduce calcium and stimulate over production of PTH. Knowing the risks of elevated PTH, including gall stones, CVD, SCD, prostate cancer and psychosis, it makes no sense that doctors don't see what we do.
The the whole point of this site is that patients need doctors to join the dots a LOT sooner, so we can get treated sooner. Delays in diagnosing PHPT can range between five and twenty years, which we hear about every week from members who often found us during exasperated searches after suffering poor health for several to many years. It is impossible to rule out Primary Hyperparathyroidism by only testing either calcium or PTH. It is vital to look at the full picture; Calcium, PTH, Vitamin D & Magnesium, because they all play a pivotal role in calcium homeostasis.
Your GP is unlikely to know what post-operative care and advice you may need, even though you'll be discharged into their care. Realistically you will have to take charge of your own recovery, just as you had to take charge of your diagnosis. The NICE guideline committee chose to exclude guidance for post op care. We offer free and comprehensive advice via our Facebook patient support group. Please join for guidance, which is often crucial in the first few days/weeks after surgery.
You could face a significant drop in calcium if magnesium and/or vitamin D are low, and will likely need our recommended supplements (vitamin D, magnesium, boron, calcium). Lack of awareness and guidance can result in day 3/4 calcium crash; pins and needles, muscle spasms and cramps. Temporary hypocalcaemia or tetany can require urgent medical attention. (worst case scenario).
Positive news at the end of 2024 - We had two reports in December of GPs who requested all the above tests including scans, at the same time as referrals to endocrine consultants, so patients will have the results before their appointment. This makes complete sense, and will of course reduce waiting times.
If all GPs adopt this approach, there is hope for 2025 hyperparathyroid patients to be seen and treated a lot sooner.
Magnesium
We place great emphasis on the importance of magnesium for parathyroid patients, before and after surgery, with very good reasons. Magnesium is an essential co-factor when trying to raise vitamin D pre-op, and calcium post op. It's essential post-op when trying to prevent a drop in calcium and/or PTH. It works in tandem with calcium for muscle function (obviously the heart is our biggest muscle). When a patient presents with cardiac arrhythmias, how many doctors check magnesium levels? How many consider if patients are taking prescribed medications which could reduce serum magnesium? Like Omeprazole, or Cinacalcet? How many doctors know that primary hyperparathyroidism, hypothyroidism, diabetes and fibromyalgia all contribute to low magnesium?
York cardiologist Dr Sanjay Gupta recorded this information 'Why Magnesium is good for you', which reinforces my points: https://www.youtube.com/watch?v=oZYXBYAHhN8
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. Ideally it should be above 0.82 (0.7-1.00). One 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. Any clinician who predicts their patients will not need magnesium post-op without actually knowing their levels, is talking nonsense.
Message to all clinicians: Please read 'magnesium and the parathyroid', before telling your patients they don't need magnesium testing and wont need to take a magnesium supplement. We recommend magnesium glycinate https://pubmed.ncbi.nlm.nih.gov/12105390/
Serum magnesium only represents 1% of our magnesium. The remaining 99% is in bones and cells where its needed. Many parathyroid patients will benefit from supplementing with magnesium but it is important to ask your doctor to test magnesium before supplementing because high serum magnesium can be an indicator of FHH. Please do your own research, or join our support group to learn from our ten years of research and patient experiences.
Here is one example: '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 still clogging the NHS system unnecessarily.
We hope the new initiative by NHS England in January 2025 to cut waiting times and give GPs increased responsibility to request scans and tests, therefore bypassing consultants, will help to unclog the system that has ground to a halt in recent years, with endocrinologists acting as gatekeepers to thousands of hyperparathyroid patients, preventing them from reaching surgeons. Endocrinology, rheumatology, urology, neurology, A&E, fracture clinics, GP surgeries have all become overwhelmed. We suspect PHPT patients are a substantial bulk of these patients due to poor understanding of PHPT by clinicians. This is especially typical for patients with non-classical presentations of primary hyperparathyroidism, especially normocalcaemic PHPT patients.
Normocalcaemic (NCPHPT) & Normohormonal (NHPHPT) are distinct biochemical presentations of PHPT Both require the same surgery as classical presentation of elevated calcium and parathyroid hormone. If your clinicians are not up to date, 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 statements from four surgeons who do recognise and operate on NCPHPT patients. You will find more on our recommended surgeons you may wish to contact: Experienced Surgeons. .
We remain exasperated by the scale of doctors and endocrinologists who still fail to understand that many symptoms, end organ damage of osteoporosis, kidney stones & 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 extremely 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 hyperparathyroidism. Many don't understand hyperparathyroidism at all. We remain mystified by their confusions, knowing that hormone regulation is supposedly their specialty. The reality is that many of them are diabeticians, masquerading as endocrinologists. If your GP refuses to refer you directly, please contact us or look up Patient Choices: https://www.nhs.uk/using-the-nhs/about-the-nhs/your-choices-in-the-nhs/
It often feels as though the Hippocratic Oath of 'Do no Harm' is not relevant for hyperparathyroid patients. We hear of many NHS Trusts with endocrinologists acting as gatekeepers, keeping patients very unwell, preventing them from getting to see great parathyroid surgeons in the same hospital.
Patients, please educate yourself about PHPT. Doctors, please update your knowledge of PHPT to help you to help your patients.
Our site could be a useful aid to your diagnosis, journey to surgery, and recovery. Suggest and encourage your doctors to read this site to help yourselves 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. 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 ask our members in your area if they might know.
Many doctors are not up to date about PHPT, which can cause long delays in diagnosis and treatment. Go to PHPT Details to learn more about diagnosis, symptoms, normocalcaemic and normohormonal PHPT. About US has case stories detailing prolonged diagnosis/misdiagnosis and why I started 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 hypercalcaemia guideline which was not what I campaigned for. They offer no better advice than this site, but are marginally better than no guidelines at all. Our attempts to get them revised have been refused. When they were published in 2019, I was advised a review would be due in 2024, but have now been informed there isn't a planned review. https://www.nice.org.uk/guidance/NG132.
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 other PHPT patients. A member complimented us this morning (06.02.2025): 'I think this group wins the award for the kindest group I have ever come across'
Primary Hyperparathyroidism - Normocalcemic & Normohormonal classifications = same cure:
A parathyroidectomy, performed by experienced parathyroid surgeons.
PHPT is historically known to present with elevated calcium and parathyroid hormone, despite population based studies reporting normocalcemic primary hyperparathyroidism since 1969. Contrary to popular medical belief, Normocalcemic PHPT isn't always an early presentation of Primary hyperparathyroidism which 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 should 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/
Primary or Secondary Hyperparathyroidism???
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High normal calcium with high normal or raised PTH is very likely to be Primary Hyperparathyroidism.
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If calcium is high normal and you have symptoms, your doctor should retest with a corresponding PTH but some hospital labs will refuse
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Low calcium with raised PTH is likely secondary hyperparathyroidism. Your doctor should test vitamin D and magnesium.
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Growing numbers of people will have calcium within the normal range and raised PTH. We ask if they're taking prescribed medications such as bisphosphonates or PPIs which reduce serum calcium into the top of the normal calcium range. We often see members who had a focused scan guided surgery with high calcium, whose symptoms return despite being normocalcemic. They face a difficult battle to be taken seriously a second time. I don't believe normocalcemic is a new entity. Normocalcemic primary hyperparathyroidism was discussed in medical studies dating back to 1969. Please do your research, and direct clinicians to this site. Join our support groups and/or read the studies in 'A Normal Christmas'. Kindle version takes you directly to the studies on NCPHPT. Read our positive post-op case stories many from people who had NCPHPT. More UK surgeons are finally recognising and operating on Normocalcemic patients. The message is still slow to reach endocrinologists and GPs. Just one of many studies bizarrely describing NCPHPT as a new entity: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3127400/
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22.5% of the primary hyperparathyroid population (at time of writing in 2016) 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/
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People with recurring PHPT and multiple gland disease, who have been diagnosed with tumours elsewhere like pituitary or pancreas should be genetically screened for MEN (Multiple Endocrine Neoplasia).
Post Operative Advice and Care
Immediate advice regarding oedema and redness at the site of surgery should be addressed by your surgeon. Beyond that there is very little appropriate advice and care in the UK. The NICE guideline committee chose to exclude 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 for hungry bones or low calcium symptoms, even if blood levels are sufficient. Many will benefit from them for life. Why would any or us want this battle a second time? If a patient experiences tingling in hands, fingers, legs or face, they should not ignore these symptoms. Re-mineralisation of bones begins soon after surgery. A post-op calcium dip on days three or four is common for patients who experience a hefty drop in calcium from high pre-op levels, or those with low vitamin D and/or magnesium. Dietary calcium, magnesium, boron, vitamin D, K2 ( Note for those taking blood thinners, a dose over 50 mcg may interfere with your medication) supplements, hydration and rest (think two weeks convalescence) are important after surgery. Maintaining good vitamin D and magnesium levels going forwards is extremely important.
A successful parathyroidectomy will halt the progress of hyperparathyroidism and in most cases, reverse associated symptoms. We advise to reasonably expect the first week or two to be slow, expect post op fatigue as the body heals, and to rest and sleep as needed. Many follow a supplement regime to help bones repair and reverse bone loss. Vitamin D, Magnesium (Malate in the morning and/or Glycinate in the evening), boron (found in its highest content in parathyroid glands, then bone), some benefit from vitamin K2(MK 7) which help many who have had PHPT a long time. Some may need vitamin D and magnesium for life. Some will need calcium for a while after surgery (especially if pre op vitamin D was low), but all will benefit from from increased dietary calcium (look up calcium rich foods, it doesn't have to be dairy). Low magnesium from day one after surgery is not uncommon, especially if it was low pre-op which is why we support this study from The world journal of surgery: https://link.springer.com/article/10.1007/s00268-020-05425-1
Medical post-operative care and support in the first few weeks is widely lacking throughout the UK.
It's not uncommon for patients to experience an emotional and physical roller-coaster, as our bodies begin to reverse the hormonal process of PHPT. We advise asking surgeons to record post op calcium, PTH & magnesium, and to advise GPs to arrange follow up blood tests if patients become symptomatic for low levels not relieved by supplements and dietary calcium. We hear of GPs who refuse follow up bloods because they have not been instructed to do so by a surgeon, even though patients have been discharged into their 'care' by the surgeon. Intense pins and needles beginning in fingers, toes, and around the mouth, can spread rapidly if ignored. From experience, we advise to drink milk and take calcium. If the pins and needles don't cease, repeat after 30-40 minutes. It is important for those needing magnesium to separate it from calcium by four hours (in the same way calcium and magnesium should be separated from levothyroxine by four hours).
This information site was created to help patients whose doctors are not up to date, who will benefit from reading positive case stories, and advice from other patients. A parathyroidectomy is a very worthwhile procedure to regain health. Our members find it helps to talk to others going through the same journey. Please don't suffer alone with this disease, which few people both medical and non-medical seem not to have heard of. Join us on Facebook, introduce yourself to our members and feel free to ask for advice and recommendations. Please read our case stories to give you hope if you're waiting for surgery, and determination to NEVER GIVE UP if you're still fighting for a diagnosis or surgery. Please ask your doctors to read our website and make contact with us if they have questions or would like to join our medical group; HPT UK Medical. Our leaflets can be ordered in packs of ten. Please go to our contact page for details.
Shad Khan
Consultant Endocrine and General Surgeon
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."
Matthew Ward
Consultant ENT Surgeon
Portsmouth Hospitals University NHS Trust
"I've operated on 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."
My favourite Twitter/X Post ever!
Paul Dent
Consultant Endocrine Surgeon
Croydon University Hospital
I am an exclusive NHS consultant. I have been a consultant for almost 8 years and have a waiting time of 4 weeks as I manage it myself. I do 5-6 cases a day and I have operated on normocalcemic PHPT patients.
Tarek Abdel-Aziz
Consultant Endocrine Surgeon
UCLH London.
I advocate surgery for normocalcaemic primary 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. If all scans are negative, I operate under the guidance of intraoperative PTH assays which I use in all my cases to ensure a biochemical cure.
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:
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Gastric Bypass
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Vitamin D Deficiency
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Celiac Disease
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Crohn's Disease
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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