Welcome to
Hyperparathyroid UK (HPT UK)
Action 4 Change
HPT UK
A4C
Est. 02.09.2014
It's Not All About the Levels
The level of calcium does NOT determine the severity of symptoms
Primary Hyperparathyroidism - The Details
The role of parathyroid hormone (PTH).
Parathyroid hormone (PTH) works hard all day, every day, to balance/regulate blood calcium (in the same way a thermostat regulates heat), to keep calcium levels in a tightly controlled range (most often 2.2-2.6 in the UK) by promoting calcium release from bone (where most of the body’s calcium is stored). This increases the body’s ability to absorb calcium from food and increases the kidney’s ability to hold onto calcium that would otherwise be lost in the urine.
Calcium balance is crucial for the normal functioning of multiple body systems; in particular the heart, nervous system, kidneys, and bones.
Calcium and PTH work together in a perpetual negative feedback loop. The important factor to consider when looking for PHPT is where in the range both calcium and PTH fall. It is never normal to see both elevated calcium and PTH. It is also never normal to see both calcium and PTH high within the normal range.
Notes for doctors:
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It is not possible to detect or rule out primary hyperparathyroidism by looking at calcium levels alone.
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Calcium levels must be tested with PTH to consider their relationship.
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It is important to establish vitamin D levels when testing calcium and PTH the first time.
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Be aware of the impact on cardiovascular disease in a patient with elevated parathyroid hormone and vitamin D deficiency.
In a healthy individual, low calcium will stimulate the release of PTH to increase the release of calcium from bone, so when blood calcium is high, the parathyroid glands stop producing PTH.
Symptoms should always be considered. If you have typical symptoms of HyperPARAthyroidism and your PTH is inappropriately raised for the level of calcium, your doctor should refer you for further investigations, including an ultrasound scan, sestamibi scan, and a bone density scan which should include the non-dominant forearm, as bone loss in the wrist cortex is indicative of PHPT. Negative scans or adequate bone density should not prevent surgery if you are biochemically diagnosed with symptoms. Please see the symptom survey results below.
When a pan of water is boiling, we turn down or turn off the gas. PHPT is a similar principle. When PTH is unable to balance your calcium, it is malfunctioning and needs to be fixed by removing the malfunctioning parathyroid gland(s). Imagine two children on a see-saw. It is never normal to see both children elevated. Think of the bubble in a spirit level when testing if a shelf is straight. The bubble should be in the middle. When it's at one end, the shelf is unbalanced and needs correcting.
If your blood results are questionable, repeat tests two or three times, to look for a trend. Calcium levels can fluctuate back into the normal range with PHPT. We've seen studies dating back to 1948 confirming this, and of course, we have followed a large number of our members who've gone on to have a successful parathyroidectomy in these circumstances.
Always;
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ask for the ranges used by your lab, as they vary from one lab to another.
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insist PTH is tested in EDTA to assure stability and accuracy of your results
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always ask for the exact figures rather than accept 'your levels are normal.'
Why do so many doctors and endocrinologists still not know how to recognise or diagnose PHPT? Why do so many of them think PHPT is a rare disease when actually it is a very common endocrine disease? Why do they try to treat symptoms independently, rather than the cause? Why do they still believe PHPT mostly affects post-menopausal women? Simply because their knowledge of PHPT is outdated.
We campaigned for NICE guidelines hoping they would encourage doctors to update their knowledge. They were requested by Sir Bruce Keogh, commissioned by RCGP in 2016, and finally published on 23 May 2019. They are quite far from perfect because their committee made poor decisions and recommendations which;
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fail to list the most common symptoms (actually only really list constipation, polyuria, polydipsia, kidney stones, and osteoporosis)
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fail all hyperPARAthyroid people with calcium below 2.6mmol/L (normocalcemic PHPT), by recommending no further investigation (they will most likely have elevated PTH)
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fail to cover post-operative guidance and care other than 6 and 12 monthly blood tests
Your doctor can learn from us about post-op remineralisation, and the required mineral and Vit D supplements, as you will be discharged into their care after surgery. Please ask your surgeon to note your post-op Calcium, PTH & Vitamin D, and magnesium levels on your discharge letter which will help your GP to help you if you need post-op assistance. Please direct them to this site.
We created a summary of the guidelines and sent copies to all NHS Trusts on 31 May 2019. Please join our FB support group or use the contact us page to request a copy.
How is Primary Hyperparathyroidism diagnosed?
PHPT can be diagnosed incidentally after finding a raised level of calcium in a blood test, but it is our experience that many people are tested who have symptoms of fatigue, bone pain, painful hands, joints, or even kidney stones. It is important for our doctors to realise that not everybody with PHPT will have an elevated calcium level. Typically, when a raised calcium is found, a repeat blood test should be requested with PTH (which should be tested using EDTA to ensure accuracy) and Vitamin D (to rule out secondary Hyperparathyroidism due to vitamin D deficiency). A 24-hour urine calcium collection is advisable to exclude a familial condition that mimics PHPT, but also to see if the kidneys are excreting high volumes of calcium. We would like to see calcium, PTH, vitamin D, and magnesium tested as routine for all patients with symptoms of PHPT, even if it is to rule it out as a cause.
Once PHPT is diagnosed, bone densitometry scans (DEXA) of the hip, spine, and non-dominant forearm may be performed as high bone turnover in PHPT patients is associated with a reduction in bone density, specifically in the cortical bone (forearm and hip). A kidney ultrasound will see whether the disease is causing harm to the kidneys.
An ultrasound and/or sestamibi scan are then requested to try to locate which of the glands have developed an adenoma(s). Other scan options are 4D CT or Pet Choline. A negative scan does not mean you don't have PHPT. We see many cases of positive surgery after negative scans. Please see our article on our Q&A page.
Does PHPT need treatment?
Yes. PHPT is a progressive disease. The only definitive cure is to remove the diseased parathyroid gland (s) with surgery called a parathyroidectomy. If you are asymptomatic (without symptoms) you may wish to monitor your calcium levels and bone density, but ideally, surgery should be considered before your health starts to deteriorate. The chance of being cured by a single operation is highest and the risk of complications is lowest, when the surgery is performed by a specialist parathyroid surgeon, which is highly advisable. You should continue to keep a reasonable level of calcium in your diet and stay hydrated until surgery.
Is there a non-surgical treatment?
No. Whilst a surgical parathyroidectomy is the only cure for PHPT; Cinacalcet is now licensed in the UK as treatment to reduce calcium levels back to normal range (although this does not help kidney and bone disease), as a holding measure prior to surgery or in the small number of patients that are considered not fit enough for surgery.
Age should never be a factor used to rule out a parathyroidectomy.
Out-of-date literature states that PHPT affects mostly post-menopausal women. Leaflets published by Parathyroid UK (formerly Hypopara UK) were in circulation for over a decade reporting that women under fifty with calcium over 3.00mmol/L might benefit from surgery. Our group statistics show in fact, that many women have had the disease at least 5-10 years before diagnosis, sadly some even up to 20-30 years, as our chart shows.
Statistics taken from over 1500 group members in 2018 show 31.6% of female members were in the age bracket 45-54 compared to 22.7% aged 55-64, 12.3% over 65, 17.4% aged 35-44, and 6.3% aged 25-34. Only 8 % of the group are men. If we add up all the decades lost to this disease, we would have centuries. We will never get those years back but at least we can try to make sure our doctors do not rule out PHPT due to age.
Please go to our Q&A page to read age-related feedback.
A new age-related fact in 2021/2022 is a significant number of new members have joined who are parents of teenagers from the age of fourteen to eighteen diagnosed with Primary Hyperparathyroidism.
We can only speculate to the reason for this, but we would appeal to parents to consider taking their teenagers for blood tests if suspected due to increased lethargy, joint paint, and cognitive dysfunction.
PHPT for many is not without symptoms (asymptomatic). We are astonished when we read PHPT is regarded as mostly asymptomatic when so many lives are blighted by debilitating symptoms. Why should people wait for a devastating and sometimes irreversible impact on their Quality of Life, before being offered surgery? Why should patients be forced to endure osteoporosis and/or kidney stones before being offered treatment. The treatment for kidney stones can feel torturous, and for many of our members, has lead to Sepsis.
Whatever happened to prevention is better than cure?
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We want to see blood tests for PHPT become standard routine when a patient presents with multiple symptoms, at the very least to rule it out.
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We want to see blood tests for PHPT become routine as standard when a patient presents with multiple symptoms, at the very least to rule it out.
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We want to see an end to hospital labs over ruling GP requests to test PTH when calcium falls within the normal range both before and after a parathyroidectomy.
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We want all doctors to appreciate that we all have a unique calcium set point. The population reference range does not imply that all people with calcium somewhere within the normal reference range are healthy individuals, but that some may have a set point of 2.2.00 mmol/L, whilst others have a set point of 2.6 mmol.
'Guidelines for the Management of Asymptomatic Primary Hyperparathyroidism: Summary Statement 2014'
The Fourth International Endocrine Workshop Guideline indicates in Table one that only people under fifty are eligible for surgery. The same is also quoted in the Hammersmith Endocrine Bible. Both have been quoted to our members, condemning those over fifty to an increasingly poor quality of life. as well as impacting unnecessarily on NHS resources, (decades of treatment per person for consequences of untreated hyperparathyroidism). We challenged age restrictions during the NICE guideline consultations. The benefits of a parathyroidectomy vs years of treatment for the consequences of PHPT, to both patient and the NHS are; as they say a 'no-brainer'. The new NICE guideline avoided reference to age other than to state in their 'Information to the public': https://www.nice.org.uk/guidance/ng132/informationforpublic: 'hyperparathyroidism often goes unrecognised – usually because it’s mistaken for other problems or for age-related changes (it is more common in people over 50).
Age restrictions for surgery should not apply to anybody with PHPT. People over fifty matter too! The fact some literature also states PHPT is most prolific in postmenopausal women should be ringing alarm bells in doctors' and endocrinologists' thought processes if they refuse treatment or referrals based on age, but in most cases, it's the patient who has to reason this point in their fight for surgery to halt the progressive nature of PHPT, or to enable them to continue working until the age of retirement, rather than face the risk of tumours, cancers, heart attack, strokes, osteoporosis, fractures, kidney stones, gallstones, depression, and anxiety. Please read the case story of Vanessa Longstaff who was refused treatment in Scunthorpe because she was over fifty, despite her calcium levels being over 2.9mmol/l. She was desperately ill. We encouraged her to travel to Nottingham to see David Chadwick, who of course agreed to operate. Vanessa got her life back. Surgery for her was positively life changing.
The Fourth international Endocrine Workshop Guidelines do, however, include a statement recognising normocalcemic PHPT:
'Normocalcemic PHPT is now a well-recognized variant of PHPT. These subjects have normal total and ionized serum calcium levels without any known aetiologies for a secondary elevation of PTH. Knowledge of the natural history of normocalcemic PHPT is incomplete, but some individuals become hypercalcaemic, and some show evidence of target organ involvement (eg, reduced BMD). Others, however, appear to be stable over time with persistently elevated PTH levels and normal serum calcium concentrations.'
We are somewhat satisfied to see that Normocalcemic PHPT has also been referenced in the NICE Guidelines (although not until page 15), and they have lowered the level of calcium to 2.5mmol/l to compensate for this, but they recommend against treatment until calcium is greater than 2.6mmol. Imagine calling a gas engineer to say that your gas boiler is no longer regulating your heating, as the thermostat isn't switching off when a desired temperature is reached. If he refused to attend to your boiler until the temperature remained over thirty degrees, you would call an engineer who knows that makes no sense. We do have surgeons in the UK who fully appreciate normocalcemic PHPT patients benefit from surgery, but they are few and far between at the moment (January 2022). I'm working on that - SJP.
We have seen many successful surgical cases with levels below 2.5mmol/L. The guideline committee also omitted a vital explanation of the negative feedback loop of calcium and PTH and how important it is for doctors to understand in order to make a diagnosis and/or referral to secondary care.
Fifth International Endocrine Workshop - published August 2022
Evaluation and Management of Primary Hyperparathyroidism: Summary Statement and Guidelines from the Fifth International Workshop.
https://asbmr.onlinelibrary.wiley.com/.../10.1002/jbmr.4677
The Good News:
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5.1.1: Serum calcium >1 mg/dL (0.25 mmol/L) above the upper limit of normal.
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Normocalcemic PHPT: normal adjusted total calcium and normal ionized calcium levels along with elevated intact PTH (utilizing either a second or third generation assay) on at least two occasions over 3–6 months after all alternative causes for secondary hyperparathyroidism have been ruled out. (Why 3 -6 months?)
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In patients with asymptomatic PHPT, we recommend surgery to cure the disease (strong recommendation/high quality evidence).
The bad news:
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5.3: Surgery cannot be recommended to improve neurocognitive function, quality of life, and/or cardiovascular indices because the evidence is inconclusive. (Seriously? there is so much evidence about cardiovascular implications of PHPT, I posted one the other day).
The really annoying bad news:
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5.1.4: Age <50 years (no other indications are necessary; age <50 years is a sufficient indication).
Would somebody please point out to them that Ageism was outlawed in 2012, and that Oxford surgeons Radu Mihai and shad Khan both operate on patients from 50 to 90+?
We asked our members: Have you had other surgeries believed to be caused by untreated PHPT? :
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shock Wave Lithotripsy (ESWL)
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Ureteroscopy
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Percutaneous Nephrolithotomy (PCNL)
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Ureteric Stent
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Cholecystectomy (removal of gallbladder)
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Hysterectomy
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Lumpectomy
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Miscarriage/stillbirth
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rods, plates or pins for bones
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Other
17.5%
22.5%
2.5%
20.00%
32.50%
32.5%
5.00%
20.00%
7.50%
37.50%
The results indicate the consequences of delaying a parathyroidectomy is not only costly to the NHS but has a seriously detrimental effect on a patients life quality.
40% ticked options provided, with a further 37.5% adding alternative surgery options.
That is a significant 77.5% of operations that may have been avoided with a timely diagnosis of PHPT.
32.5% needed a hysterectomy, and 32.5% a cholecystectomy (removal of gallbladder).
Parathyroid hormone should be tested in EDTA to ensure stability and accurate results.
Parathyroid hormone is unstable in serum. Therefore it should always be tested using EDTA, without exception. This is more commonly a lavender vacutainer. Whether you are a patient, phlebotomist, or doctor, please check that PTH is tested under the right conditions to save a delay in diagnosis. PTH should be drawn into a full vacutainer, after calcium to avoid contamination of calcium by EDTA, which can falsely lower the result. The filled vacutainer should be gently rotated 8-10 times to mix the blood with the preservative). Accuracy is more assured when the sample is kept at 4 degrees. The following Hospitals are all using non-EDTA vacutainers whilst other NHS Trusts specifically request EDTA. We will show them evidence to try to convince them to change their protocol.
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North Lincolnshire & Goole
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East and North Herts Trust
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Torbay
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Wiltshire
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Guys and St Thomas,
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Wirral
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Scunthorpe and Gainsborough
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Tameside
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Bupa Cromwell, London
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Central lancashire
PTH = EDTA
If your PTH is not tested in an EDTA vial, or will not go directly to the lab for testing, please show your doctor this section and ask them to specify EDTA on the blood request form.
Please be aware that some prescribed medications including estrogen therapy, and also hypomagnesemia, unregulated glycaemic index, and biotin can all affect calcium and PTH results.
A systematic review by the IFCC (International Federation of Clinical Chemistry and Laboratory Medicine) Scientific Division Working Group on PTH:
At room temperature, PTH was stable in ethylenediaminetetaacetic acid (EDTA) preserved whole blood for at least 24 h and in EDTA plasma for at least 48 h after venepuncture. Losses were observed in clotted blood samples after 3 h and in serum after 2 h. At 4°C PTH was more stable in EDTA plasma (at least 72 h) than serum (at least 24 h).
While losses of PTH observed in clotted blood samples may be small within the time frame of a typical working day (e.g., 8% [16] or 10% [18] after 8 h; 10% after 12 h [26]), such differences could contribute to misdiagnosis or changes in management of patients.
We accept that PTH is commonly measured in conjunction with calcium, and sometimes vitamin D, to permit interpretation and that this recommendation will necessitate an additional sample being taken since calcium cannot be measured in EDTA plasma. We recommend blood samples for PTH measurement should be taken into tubes containing EDTA and the plasma separated from the cells within 24 h of venepuncture [Strong recommendation].
I asked expert parathyroid surgeon Dr Babak Larian from ‘The Parathyroid Education Foundation in LA’, for his opinion. He confirmed all parathyroid hormone tests should be tested in EDTA; 'whilst pathology staff may not be concerned with the difference, providing accurate results is beneficial to both patients and consultants.
He was astonished to hear some NHS Trusts are not concerned that there ‘isn’t much difference as it can make the diagnosis process difficult for consultants and patients, and delay treatment.
I wrote to UDBH Trust (Derby and Burton) several times over three years providing much evidence of the benefits to EDTA over serum when testing PTH. Despite this evidence, and a biochemist from another Trust stating 'Does anybody test PTH in serum anymore?' and 'That is just WRONG', UDBH Trust claimed to have evidence PTH is stable in serum for up to 24 hours. They refused to make any changes. However, following communication sent to them in September 2019, I was very happy to see this notice in their blood clinic, which could well impact diagnosis positively for people in Derby, Burton, Tamworth and Lichfield, although unlikely to help get them treatment until calcium exceeds 2.85,look out for upcoming story for details). I hope the remaining Trusts on our list above will also make necessary changes (and not take three years to do so).
Scientifically flawed diagnostic testing of Primary Hyperparathyroidism
By Kathy Sassoon
The premise of this article is that the indications for diagnostic testing for primary hyperparathyroidism are scientifically flawed. They are flawed in such a way that any research programs based on them will be inaccurate and unable to further the aims of the National Health Service in improving health outcomes for the population. The normal range for calcium levels in the general population is based on a study of individuals who are healthy. The results are graphed and displayed as a Bell curve with the outlying results removed at both extremes. The lowest and highest levels of calcium found in this random population of healthy people are taken as the extremes of the range at which any person will be healthy. This interpretation is the first and most important error which must be corrected before a correct diagnosis can be made.
The normal range of calcium is taken to be 2.15 – 2.6 at my local laboratory, although this varies from area to area according to local protocols. What this means is that Healthy Person A in the study had a calcium level of 2.15 and Healthy Person Z had a calcium level of 2.6. What it DOES NOT mean is that Healthy Person A will still be healthy if their calcium level rises to 2.6. Nor will Healthy person Z be healthy if their calcium level falls to 2.15. However, this is exactly the distortion that the incorrect interpretation of what a normal range means, produces. It is taken for the medical diagnosis that any patient is healthy if their calcium level is between 2.15 and 2.6. This goes against all the scientific understanding of the endocrine system.
Calcium must be maintained within a tight balance for the health of any individual. Healthy Parathyroid glands secrete parathyroid hormone in a pulse in response to a slight drop in calcium availability in order to bring calcium back up to that individual’s healthy level. Then PTH hormone drops sharply with a half-life of five minutes as soon as calcium is replenished. This is the suppressive relationship. Evidence of this healthy suppressive relationship being disrupted should be used as the diagnostic criteria. If our Healthy Person A with their healthy calcium level of 2.15 has a rise in calcium to say 2.4 due to an adenoma, their calcium level is seriously elevated but still well within the normal range. So they won’t meet the criteria for a test of parathyroid hormone as they don’t officially present with hypercalcemia. However, if they did get tested the result would show a disrupted suppressive relationship between calcium and PTH hormone, i.e. that PTH remains elevated consistently over three blood tests and is not suppressed by a blood calcium level of 2.4.
Take Healthy Person Z with their individual set level of calcium at 2.6. Their calcium level rises due to an adenoma to 2.7 which is a much lower rise against their healthy level than person A suffers from, but if they are lucky enough to be tested for calcium they are tagged as hypercalcaemic and may well end up being diagnosed promptly. Person A’s disease is more severe and their symptoms may well be more pronounced but they remain undiagnosed and ill and eventually often sadly blamed for their own ‘inexplicable’ disease. This unfortunately often leads to abuse and misdiagnosis in the mental health system. It also uses up exhaustive amounts of NHS resources economically which must be included in any thorough assessment of the economic impact of an increased testing regime.
We have established thus far that each person has their own individual level of calcium in their blood at which they are healthy, and health is maintained by homeostasis through a suppressive relationship with parathyroid hormone. By using the example of two healthy people with individual levels of calcium at different extremes of the population norm, we have shown how diagnosis based on hypercalcemia defined by population range, not by individual range can lead to major misdiagnosis and neglect. There are efforts to avoid this within the endocrinology specialism by defining those with calcium in the normal range but who do have adenomas as evidenced by surgery, as a subset of “Normocalcemic Hyperparathyroidism’ but in reality this is unnecessary if only the reality of individual set calcium levels is recognised and then diagnosis is by evidence of the disruption of homeostasis.
This leads on logically to the need for individuals to have their calcium levels recorded at 18 years old while they are healthy in the same way that babies automatically have their blood group recorded. This would show any elevation in later years accurately in the general population who present with generalised malaise with or without renal and bone disease. Any conclusions through research which uses the incorrect diagnostic methods to analyse blood tests for this condition cannot be considered scientifically accurate or appropriate for use in designing a public health response.
Current estimates in the US are that 5% of the general population have Primary Hyperparathyroidism. The same should hold for the UK. It is reasonable to state therefore that large numbers of patients are not being correctly diagnosed and treated. Even ignoring the individual suffering this entails, the economic burden on the NHS must be significant. Given that diagnostic tests are not ordered until the 2.6 level of hypercalcemia is reached, and even then studies to date are considered weak and inconclusive, I would recommend relevant research based on correct understanding of the endocrine relationship and its disruption immediately.
The present protocols need to be rewritten in their entirety and pathologists and doctors at all levels need to be retrained according to the principles of Endocrinology that are simple once taught correctly, as a matter of urgency. The health crisis in the UK due to unscientific diagnostic methods can then start to be addressed. If there is any doubt as to the existence of a crisis in regards to this condition, the group Hyperparathyroid UK Action4change has hundreds of case studies that can be made available for scrutiny with the permission of the individual patient. We would all be extremely grateful to have this contact in order to work together for the relief of this debilitating. life changing and even life-threatening condition.
Symptoms of PHPT can vary, sometimes based on the length of time it has remained untreated. By the time many people are diagnosed due to symptoms, they will usually have had PHPT for some time.
Initial symptoms have been reported to be chronic fatigue, depression, migraines, heartburn, mood change, insomnia, aching joints (usually hip and knee) and muscle weakness. As time progresses symptoms can increase to cause blurred vision, severe bone pain, memory loss and confusion, poor coordination, pancreatitis, hair loss, osteopenia/osteoporosis, unstable blood pressure, kidney stones; and in severe cases; strokes, heart attacks and coma.
Hyperparathyroid UK Action 4 Change Symptom Surveys; 100 people in 2016, followed by 335 people in 2019.
We conducted a survey to ask members if they had been diagnosed coincidentally or from symptoms.
Coincidentally in this case means they were not told by their doctor; "I would like to rule out PHPT for these symptoms" If doctors were more aware of symptoms attributed to PHPT, they might be able to diagnose it sooner.
88 respondents:
60 diagnosed coincidentally
26 diagnosed after reporting symptoms
2 in between (a combination of both)
We also asked: Should bone profile blood tests become routine like cholesterol, blood sugar, haemoglobin etc when we get regular checks?
The response was a resounding YES from all respondents, with comments that GP's need training to be able to understand and act on them.
Many UK GP's and endocrinologists are described as the brick wall or unrelenting gatekeeper to surgical referral. Many are letting down their patients due
to poor knowledge of primary hyperparathyroidism. They should understand blood results and act appropriately, but we see too many cases where unsatisfactory blood results are marked as satisfactory on patients records. Those patients are denied referrals and left to be monitored year after year whilst their quality of life and health deteriorates. Please see our recommended list of endocrinologists who DO act appropriately, or contact us for advice. The best advice we can offer, is to skip the endocrinologist in most cases, and go straight to surgeon to avoid long delays that will be detrimental to your health and life quality. A GP can refer direct to a surgeon. If they tell you they cant, please contact us.
Symptom Survey 2016: 100 people:
Fatigue (94%)
Cognitive dysfunction (90%)
Depression/low mood/isolation (70%)
Anxiety (72%)
Mood changes/quick temper (64%)
Bone Pain (constant dull ache) (74%)
Joint pain & reduced mobility (79%)
Hair loss around face (47%)
Excessive dry/itchy skin/eczema (55%)
Constipation (49%)
Diarrhoea (26%)
Weight Loss (8%)
Weight Gain (61%)
Swollen abdomen/bloating (65%)
Headaches/migraines (58%)
Gynaecology: adenomyosis/fibroids/
endometriosis/Poly cystic ovaries (32%)
Gall bladder disease/gall stones (20%)
Pancreatitis (5%)
Kidney Disease/kidney stones (32%)
Insomnia (64%)
Heartburn (Gerd) (62%)
Muscle weakness (66%)
Polyurea (frequent urination) (32%)
Polydipsia (unquenchable thirst) (32%)
Palpitations (62%)
Soft tissue Calcification (9%)
Raised BP (needing medication) (27%)
Low Blood Pressure (11%)
Dental Cavities/teeth breaking (48%)
Brown tumours (5%)
Tinnitus/hearing loss (26%)
Osteoporosis/osteopenia (47%)
Bone Fractures (9%)
Miscarriage/stillbirth (7%)
Symptom Survey 2019: 334 people:
Fatigue (334)
Depression/low mood/isolation (285)
Bone Pain (constant dull ache) (269)
Cognitive dysfunction (268)
Insomnia/interrupted sleep (259)
Anxiety (246)
Joint pain & reduced mobility (239)
Muscle weakness (230)
Mood changes/quick temper (221)
Palpitations (215)
Polyurea (frequent urination) (193)
Weight Gain (191)
Vision disturbances(blurred/double) (180)
Heartburn (Gerd) (170)
Osteoporosis/osteopenia (160)
Constipation (169) Diarrhoea (76)
Excessive dry/itchy skin/eczema (155)
Extended abdomen/bloating (147)
Dental Cavities/teeth breaking (134)
Polydipsia (unquenchable thirst) (124)
Tinnitus/hearing loss (118)
Dizziness, affected coordination (92)
Raised BP (needing medication) (91)
Gynaecology: adenomyosis/fibroids/
endometriosis/Poly cystic ovaries (86)
Kidney Disease/kidney stones (76)
Hair loss around face (73)
Ocular Migraines (50)
Gall bladder disease/gall stones (47)
Bone Fractures (36)
Low Blood Pressure (31)
Soft tissue Calcification (30)
Weight Loss (21)
Brown tumours (4)
Miscarriage (14) Stillbirth (4)
Please show these slides to your doctors, and consultants, courtesy of Dr Babak Larian:
https://www.hyperparathyroidmd.com
Dr Larian hosts a live Q&A once a month on Facebook. All sessions are recorded and are available to watch on his FB site:
https://www.facebook.com/parathyroidcenter
As you can see from our 2019 survey, a far greater proportion of people were diagnosed coincidentally rather than based on symptoms alone. That can be lucky for those surprised to find they have a condition diagnosed quickly before it takes a toll on their health. But many are denied a diagnosis or even appropriate blood tests because doctors mistake their symptoms for 'something else', anything else it often seems.
NICE guidelines of course would have doctors and endocrinologists believe that constipation, excess thirst, and excess urination are the worst symptoms of PHPT. We see astonishing cases of medical ignorance every day. We see people who have suffered years, even decades from crushing fatigue, debilitating joint pain, cognitive dysfunction mimicking dementia, fractures, sepsis, stones, repeated TIA, and the list goes on and on.. but their doctors fail to test for calcium and PTH because they are not constipated? Or if they do test calcium, and it's less than 3,00mmol/L they say it's not high enough to cause their symptoms. We are astounded to STILL hear this. Why and how have these doctors remained in the dark about primary hyperparathyroidism.
Please refer your doctors to this site and this page if they tell you that your symptoms are not caused by PHPT.
Also please ask them to insist on testing both calcium and PTH (in EDTA) even if your calcium result is within the normal range.
Untreated primary hyperparathyroidism whether normocalcemic or hypercalcaemic increases patients' risk of cardiac disease and diabetes.
A parathyroidectomy reduces those risks. Do NOT accept the damaging 'Watch & Wait'
Quality of Life Survey conducted by Hyperparathyroid UK Action 4 Change. May 2017:
People with Primary Hyperparathyroidism are often classed by doctors/endocrinologists as being asymptomatic, which can delay their referral for surgery. Too many doctors fail to consider the quality of life for their patients when deciding on a referral for surgery. We conducted a Quality of Life survey for people with Primary Hyperparathyroidism. We hope doctors will look at this survey and consider the impact of poor life quality.
We asked one hundred people "What impact has untreated hyperparathyroidism had on your quality of life"?
The number of responses are in brackets.
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I had to give up work (30)
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I have had a lot of time off work/I worry I will lose my job (36)
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I am afraid of my own mind due to confusion & have become socially withdrawn (46)
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I feel I am letting down my family/they do not understand me (63)
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I have lost a lot/all of my friends (20)
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I have no quality of life other than existing/waiting (46)
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My doctors do not understand. They say I am just depressed (29)
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The only people who understand what I am going through are in online support groups (60)
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I feel lost, isolated and lonely (34)
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I feel I have aged before my time (83)
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I feel like I am dying (31)
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Reading post op stories is the only glimmer of hope keeping me going (47)
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Every day is the same. I wake up in pain, I go to bed in pain (51)
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I cant sleep at night due to insomnia, pain or needing to urinate, so I am exhausted all day (66)
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Other (15)
Hyperparathyroid UK Action 4 Change; patient-to-patient support group, hosted by Facebook since 2014
Members of our support/action group (currently 2800+) Hyperparathyroid UK Action4Change have found us on Facebook after searching for Hyperparathyroidism, parathyroid, or raised calcium. They come to us looking for answers and support, usually after years of consulting their doctors with symptoms such as fatigue, memory loss, bone pain, and aching joints. Many have been turned away year after year, having been told their symptoms cannot be related and are likely caused by fibromyalgia, early menopause, age, or lifestyle. Those who have had a raised calcium level picked up are often told their calcium is not high enough to be causing symptoms. This simply is NOT true. the level of calcium does not dictate the severity of symptoms.
Hyperparathyroidism is a degenerative disease that will weaken your bones, cause soft tissue calcification, and make you feel very poorly. Our advice is to list all of your symptoms, create a chart of all your recorded calcium, PTH, and Vitamin D Levels, and ask your doctor to read our site or do some research. If you are diagnosed with 'mild' hyperparathyroidism, and your doctor will not refer you to an endocrinologist or surgeon, please consult another doctor with more knowledge about this disease. Your symptoms will likely get progressively worse the longer you have PHPT. The sooner you have surgery the less you will suffer.
Please join our support group to help you get a diagnosis and referral. Ask your doctor to read this site. Patients have to find the fight within them to keep pushing for diagnosis and treatment which is so hard to do when you are faced with debilitating symptoms. If you have a good experience with your GP, endocrinologist, or surgeon, please tell us so that we can share your recommendations. You could ask them to join our medical group to learn more and join a growing number of consultants who recognise all classifications of PHPT.
Normocalcemic Hyperparathyroidism (NCPHPT)
NCPHPT is reported to be characterised by high PTH and normal levels of calcium. It was officially recognised in 2008 when an international conference took place for clarifying its nature and relevance (Bilezikian et al., 2009). In order for a diagnosis, certain conditions must be met. In particular, all secondary causes for hyperparathyroidism must be ruled out, and ionized calcium levels should be normal. If ionized calcium levels are above normal, the diagnosis changes to classic primary hyperparathyroidism (PHPT). In true NCPHPT, patients have elevated PTH with normal serum and ionized calcium at all times, not just intermittently. Some doctors make this distinction and some do not.
NCPHPT is a controversial area. Many doctors still believe that unless your calcium is above a certain level, you do not need surgery. However, patients with even low levels of calcium have had successful parathyroidectomy and have benefited from an improvement of symptoms. Each person needs to be assessed on an individual basis. If you have NCPHPT, it is recommended that you build up your own knowledge so that you can ensure you get a correct diagnosis and surgery. The purpose of this document is to help you get started with building your knowledge. Symptoms of NCPHPT can be the same as classic PHPT.
Secondary Hyperparathyroidism
“When diagnosing PHPT, secondary causes must first be ruled out. 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 [39].” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4153463/
Vitamin D deficiency is often the first thing that needs to be ruled out. If you have low Vit D, you may be asked to supplement to rule out secondary HPT due to vitamin D deficiency (in which case, magnesium can be helpful). You may also be asked to supplement with calcium (in which case vitamin K2 can be helpful). Gastric bypass due to malabsorption issues, Celiac disease and Crohn's disease (typically severe for many years) and metabolic bone diseases that lead to elevated PTH, e.g. Paget’s disease all need to be ruled out.
Surgeons
Some surgeons will work with high-normal calcium but not low-normal. Our recommended surgeons page highlights surgeons who understand NCPHPT. So, if you have NCPHPT with low-normal calcium, even more research may be needed to find a surgeon. If you learn of surgeons who operate on normocalcemic patients, please do let us know.
Blood Tests
Calcium, PTH and Vit D need to be tested at the same time regularly. Adjusted/corrected calcium levels can help with diagnosis. However, the adjustment is an approximation and can be flawed. Adjusted/corrected calcium is attempting to measure what ionised calcium actually measures. For some, it will work against a correct and accurate diagnosis. If you are still having trouble getting diagnosed, an ionised calcium test, where possible, is recommended. The result may still be in normal range but, if it is a higher level or even above the reference range, it can help you move forward with diagnosis and treatment. This can be a significant point for those with NCHPT who are struggling to get correct diagnosis and treatment. If you do get an ionised calcium test, ensure it’s at the same lab and at the same time as serum calcium, PTH and Vit D are drawn.
If your PTH remains elevated, this needs to be explained. Once secondary HPT has been ruled out, ask your specialist; why is my PTH high? Each of us has our own set point for calcium. Reference ranges are based on a bell curve. You may just have a lower set point. This is one possibility.
Links
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3127400/
http://m.endocrinediseases.org/parathyroid/normocalcemic_hyperparathyroidism.shtml
Mild Primary Hyperparathyroidism: A Literature Review
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4153463/
PTH Best Risk Predictor in Parathyroid Disease
http://www.medpagetoday.com/Endocrinology/GeneralEndocrinology/38658
Ionised, Adjusted/Corrected Calcium
https://acutecaretesting.org/en/journal-scans/in-favor-of-more-ionized-calcium-measurement
http://jasn.asnjournals.org/content/19/7/1257.full
https://www.ncbi.nlm.nih.gov/pubmed/15657582 & osteoporosis
Osteoporosis
Normocalcemic hyperparathyroidism in patients with osteoporosis.
& https://www.ncbi.nlm.nih.gov/pubmed/15657582 calcium.ionised
Bone Mineral Density Evolution After Successful Parathyroidectomy in Patients With NCPHPT:
https://academic.oup.com/jcem/article-lookup/doi/10.1210/jc.2013-1518
Normohormonal Primary Hyperparathyroidism (NHPHPT)
NHPHPT is recognised in the UK as a clear distinction of PHPT by only a few conscientious doctors, a few surgeons and even fewer endocrinologists. A fact which is quite beyond comprehension when there is so much evidence. People with Normohormonal NHPHPT, (elevated/high normal calcium with inappropriately suppressed parathyroid hormone), are still greeted with blank medical faces and offered no explanation on the basis their calcium is within range.
Helen O'Callaghan had NHPHPT, although this diagnosis was denied by a London surgeon at Hammersmith Hospital. Helen had to pay to go to Florida. Her is a photograph of the 3cm x 1.5cm adenoma removed. HRT was suppressing her calcium level to 2.61 with a PTH of 4.9.
Helen: 'After a 4 year battle with this illness; high calcium and high alkaline phosphate, Gerd, bone pain, memory loss, still no further with endocrinologists; I even had a private appt with FP. He said, "I don’t think you have PHPT"!
I’m from a medical background so I knew I had PHPT, I could even feel the discomfort of a tumour in my throat. After lots of consultations and support, I took myself to the USA Tampa under the care of Dr Norman. What can I say; yes it’s expensive but priceless they are amazing! My tumour has gone and already I feel so much better, just having had a slight calcium crash as I’ve had the illness for so long'.
Sallie Powell: See the result of a blood test indicating PHPT in 2011; adjusted calcium of 2.79 picked up with normal parathyroid hormone level of 48 (15-65). calcium levels of 2.91 had been missed in 2006 and 2008, and PTH had not been tested. I had a 700mg adenoma removed in 2012. However, by 2015, I had a strong suspicion of persistent primary hyperparathyroidism. Based on biochemically normal blood levels, it took me a further six years to find a consultant who would offer me a scan. I spoke to Shad Khan in Oxford in November 2020, who said he would offer me a scan if my GP would refer me. He removed a second adenoma in May 2021 as well as my shrivelled, fibrous thyroid (so glad that's gone too!
Magnesium, Vitamin D, K2, boron, and calcium supplements.
If you are supplementing with calcium (post-op) and/or vitamin D, you will likely also need magnesium. If you are taking cinacalcet (mimpara) or omeprazole (or other proton pump inhibitors), you will also need to replace magnesium depleted by these medications. About half of the body's magnesium is found in bone. The other half is found inside cells of body tissues and organs. Magnesium is needed for nearly all chemical processes in the body. It helps maintain normal muscle and nerve function and keeps the bones strong. Magnesium is also needed for the heart to function normally and to help regulate blood pressure. Magnesium also helps the body control blood sugar levels and helps support the body's defense (immune) system. The normal ranges for blood magnesium level are usually 0.7 - 1.00 or 1.7 to 2.2 mg/dl.
If you have low vitamin D pre-op and your doctor prescribes large weekly/monthly doses of vitamin D i.e 50,000 IU, decline it (especially those little blue capsules containing BHT, banned in many countries due to carcinogenic properties). It will likely not increase your vitamin D, cause calcium levels to spike, make you nauseous and cause hypomagnesemia. You should instead take a lower daily dose with magnesium which will be more effective in increasing your Vitamin D levels without making you very ill.
Please read the following article from the Journal of the American Osteopathic Association, March 2018: Role of Magnesium in vitamin D activation and function. Share it with your consultants:
Please be aware of the importance of magnesium, the symptoms of low magnesium, and the importance of maintaining healthy magnesium levels when supplementing with calcium (although it should be taken about 4 hours before or after calcium, rather than taken together) and vitamin D before and after your parathyroidectomy.
'Since pathologists first started studying the heart, they realised that a connection existed between deposits of calcium and heart disease. Vitamin D inhibits calcium deposition in arteries, and magnesium converts vitamin D into its active form so that it can prevent calcium build up in cholesterol plaque in arteries. The combination of magnesium and vitamin D helps prevent clogged arteries by drawing calcium out of the blood and soft tissues back into the bones where it is needed to build healthy bone structure' Dr. Carolyn Dean MD ND Author of The Magnesium Miracle.
MAGNESIUM and BORON:
Some of you may wonder why we mention magnesium so often, and boron. Our members will see we mention reading the magnesium file in our welcome post. We even mention it in one of our group rules. Some of our members will know exactly why; because they read the file, and it's attached comments and decided to give it a go. The benefits and improvement to symptoms were so remarkable, that they also now tell people to read the same file. We talk about it because some of our pre-op symptoms are actually not directly caused by primary hyperparathyroidism, but by a need for magnesium, boron, and vitamin D.
This applies to people post-op as well as pre-op. A parathyroidectomy can halt primary hyperparathyroidism, but it doesn't miraculously correct magnesium, vitamin D, and boron levels. Some of us feel amazingly well after surgery, but as the months go by, begin to notice some symptoms returning. It's very likely those symptoms are actually due to vitamin D deficiency, or insufficient boron or magnesium. You will likely benefit from taking vitamin D and minerals for life.
If you have diabetes, hypothyroidism, or high blood pressure, or you are taking omeprazole or cinacalcet, then you very likely have hypomagnesemia or very low levels of magnesium.
If you have insufficient vitamin D, magnesium, and boron, it's highly likely you will feel extremely unwell. Add primary hyperparathyroidism to the mix and you might struggle to function. There is something you can do to help yourselves. You can join either one of our FB groups and read all the information in the comments attached to the supplements file called: Magnesium, Vitamin D, Calcium, K2, and Boron: why they are so important to all of us'
So the reason we go on and on and on about these supplements, is that taking them can help you all to benefit from reduced symptoms pre-op and post op.. for life.
If you don't wish to join our groups to read the files, do your own research. You'll likely be glad you did.
Multiple Endocrine Neoplasia Types 1, 2 and 4.
MEN stands for Multiple Endocrine Neoplasia, of which there are four distinct types – MEN1, MEN2, MEN3 and MEN4. MEN2 was formerly called MEN2a and MEN3 was formerly called MEN2b.
Multiple Endocrine Neoplasia syndromes are inherited disorders – This means that they can be passed down in families, with each child of an affected parent having a 1 in 2 or 50% risk of inheritance.
The main characteristics of each of the disorders are as follows:-
MEN1 – 3 classic signs – Parathyroid Tumours (PHPT), Pancreatic Neuroendocrine Tumours (PNETS) and Pituitary Tumours. https://www.amend.org.uk/flippingbooks/patient-information-books/men1/men1.html
MEN2 – 3 classic signs – Parathyroid Tumours (PHPT), Thyroid Tumours (MTC), and Adrenal tumours (Phaeochromocytoma).
https://www.amend.org.uk/flippingbooks/patient-information-books/men2a/men2a.html
MEN3 – not associated with PHPT
MEN4 – 2 classic signs – Parathyroid Tumours (PHPT), Pituitary Tumours
(No patient booklet available yet, recognised previously as CDKN1B).
90/95% of MEN1 patients will be affected by PHPT, 20-30% of MEN2a patients, and in MEN4 (a relatively ‘new’ MEN1-like mutation but excluding pancreatic involvement), the penetrance is still to be defined, since the number of patients is very small (so far).
Multi-gland hyperplasia and/or multiple adenomas will occur in MEN patients with PHPT and usually presents itself in the third decade of life, although all glands may not be affected at the same time. The symptoms are exactly the same as sporadic (non-familial) PHPT, but a removal of a single gland will NOT cure the condition long-term. Sometimes when a dominant gland is removed calcium and PTH initially return to normal levels if the remaining glands have been dormant but increase again as they ‘wake up’. Sometimes if multi-gland hyperplasia/adenoma is already present, even after removal of the worst affected gland, calcium and PTH will not correct and levels will remain high.
Current UK clinical guidelines for the management of PHPT in MEN is the removal of 3.5 glands, leaving one (least affected) gland in situ to enable the body to self-regulate for as long as possible. The practice of auto-transplanting the remaining half gland into the forearm is usually avoided these days to prevent the gland from failing to function again after being moved. Some surgeons now prefer total parathyroidectomy (removal of all 4 glands and lifelong calcium and Vit D supplements), although there is an argument that HYPOcalcaemia (low calcium) is sometimes difficult to balance and can be just as troublesome as HYPERcalcaemia (high calcium). In addition, it is relatively common for MEN patients to have more than 4 glands, sometimes ‘hidden’ in the thymus or chest, so even 4 gland removal is not a guarantee of a cure. Even after removal of 4 glands, if there is any parathyroid tissue left in situ, it too will eventually become hyperplastic and PHPT will return.
Further education of both patients and medics is essential to ensure that genetic testing is offered to potential MEN patients. Any 2 out of the 3 classic signs of MEN1 and MEN2 constitute a clinical diagnosis (an assumed positive for MEN) even without genetic testing and will enable the patient to have annual screening (bloods and imaging) necessary for the successful management of MEN. In addition, a positive genetic test will enable family members to be tested too. Early diagnosis of these disorders is a huge advantage in ensuring that a pro-active approach can be taken to stay ahead of any issues and live a relatively ‘normal’ life.
PLEASE SEEK ADVICE FROM YOUR MEDICAL TEAM IF YOU HAVE PHPT AND ONE OTHER CLASSIC PRESENTATION OF MEN, particularly if your PHPT hasn’t been rectifed by the removal of a single gland, a possible indicator of multi-gland involvement. Any similar relevant family history is helpful too, ie a parent or sibling also presenting with a classic MEN issue.
www.amend.org.uk – a UK charity providing patient support worldwide
Gill Masters (Amend UK MEN1 representative)
19 March 2019