Hyperparathyroid UK (HPT UK)
Action4Change
It's NOT All About the Levels...
HPT UK A4C
It's Not
All About the Levels
Est. 02.09.2014
Primary Hyperparathyroidism - The Details
The role of parathyroid hormone (PTH)
Calcium and PTH work together in a perpetual negative feedback loop. Parathyroid hormone works constantly to regulate blood calcium (just as a thermostat regulates heat), to keep calcium levels in a tightly controlled range, usually 2.2 - 2.6 in the UK, by promoting calcium release from bone, where most of the body’s calcium is stored, which increases the body’s ability to absorb calcium from food and the kidney's ability to hold onto calcium that would otherwise be lost in urine. Calcium balance is crucial for the normal functioning of multiple systems in the body; skeletal, muscular, nervous and cardiovascular. The important factor to consider when looking for PHPT is where in the range both calcium and PTH fall. Just as 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.
Trying to diagnose or rule out PHPT by testing calcium without corresponding PTH is futile.
It is important to establish vitamin D and magnesium levels when testing calcium and PTH the first time.
Doctors need to be aware of the potentially serious impact on cardiovascular disease for PHPT patients especiallt with elevated parathyroid hormone and vitamin D deficiency.
Seven examples of how calcium & PTH work in tandem in a suppressive relationship
Calcium & PTH within the normal range does not exclude PHPT unless they are at opposite ends or equally balanced in their ranges.
Look for an inverse suppressive relationship. In a non inverse suppressive relationship, these mechanism examples would be malfunctioning.
-
See-Saw
-
Heating thermostat
-
Spirit Level
-
Traditional Weighing Scales
-
Boiling Pan of Water
-
Automatic Kettle
-
Isaac Newton's Third Law of Motion
In a healthy individual, low calcium will stimulate the release of PTH which increases the release of calcium from bone, so when blood calcium is high, the parathyroid glands stop producing PTH. Symptoms should always be considered. If experiencing typical symptoms of HyperPARAthyroidism and PTH is inappropriately raised for the level of calcium, doctors should refer for further investigations; ultrasound scan, sestamibi scan, bone density scan including the non-dominant forearm, (bone loss in the wrist cortex is indicative of PHPT). Negative scans or adequate bone density should not prevent surgery if biochemically diagnosed and symptomatic. Scroll down to see symptom survey results.
When a pan of water is boiling, we turn down or turn off the gas. PHPT is a similar principle. When parathyroid glands are unable to balance calcium, one or more of them are malfunctioning which needs to be rectified by removing the malfunctioning parathyroid gland(s). Picture two children on a see-saw. We wouldn't see both children highly 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 followed a huge number of members over the years, who've gone on to have a successful parathyroidectomy in these circumstances.
How is Primary Hyperparathyroidism diagnosed?
PHPT can be diagnosed incidentally after finding a raised level of calcium after a blood test, but many people are tested after symptoms of fatigue, bone pain, painful hands, joints, fractures or kidney stones. It is important for doctors to realise that not everybody with PHPT will have an elevated calcium. Typically, when raised calcium is found, a repeat blood test should be requested with PTH, Vitamin D and magnesium. 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 to exclude it a cause.
Once PHPT is diagnosed, bone density scans (DEXA) of the hip, spine, and non-dominant forearm should be requested, as high bone turnover in PHPT is associated with a reduction in bone density, specifically in the cortical bone (forearm and hip). A kidney ultrasound will check if PHPT is causing harm to the kidneys (kidney stones, calcification).
An ultrasound and sestamibi scan are requested to try to locate which of the glands have developed an adenoma(s) or become enlarged. Other scan options are 4DCT or Pet Choline. A negative scan does not mean you don't have PHPT. We see many cases of positive surgery after negative scans.
Does PHPT need treatment?
Yes. PHPT is a progressive and degenerative 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 lowest, when 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 licensed as treatment to reduce calcium levels as a holding measure prior to surgery or in the small number of patients that are considered not fit enough for surgery, but does not prevent kidney stones, bone or heart disease). It is important to know that cinacalcet also reduces magnesium levels which can bring a host of new symptoms if left unchecked.
I've been asking 'why?' questions for fourteen years.
Why do so many doctors including endocrinologists, still not know how to recognise or diagnose PHPT? Why do many of them think PHPT is a rare disease when realistically 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? Why so some endocrinologists and surgeons claim Normocalcemic PHPT isn't a thing? Why do many of them think calcium below 2.85 isn't a problem? The simple answer is because their knowledge of PHPT is outdated. There is so much information available, we don't know how or why they don't know what we do. We have done our research and fo followed thousands of cases from pre diagnosis to conclusion after surgery, so they can bring themselves up to date by looking through this site.
We campaigned for NICE guidelines for PHPT, hoping they would encourage doctors to update their knowledge, and improve diagnostic paths for PHPT patients. Their commission was prompted by Sir Bruce Keogh at our request, commissioned by RCGP in 2016, and finally published on 23 May 2019. We were extremely disappointed by them. The endocrinologist who proudly claims to have written them, Neil Gittoes, doesn't appear to believe normocalcemic PHPT is a thing , or that surgery is needed, despite putting his name to two published papers citing surgery as beneficial. WHY? NG132 is a far cry from an efficient or accurate guideline, because their committee made disastrously poor decisions and recommendations applauded by Parathyroid UK whose name is cited at the bottom of them. Good, because we wouldn't want to be blamed for the dangerous and sometimes fatal outcomes caused by them. NG132 is a hypercalcemia guideline rather than a primary hyperparathyroidism guideline which;
-
fails to list the most common symptoms of PHPT (choosing only constipation, polyuria, polydipsia, kidney stones, and osteoporosis)
-
fails all hyperparathyroid patients with calcium below 2.6 mmol/L (normocalcemic PHPT), by recommending no further investigation
-
fails to cover post-operative guidance and care, other than to recommend 6 &12 monthly blood tests. Many patients need blood tests much sooner if symptomatic for low calcium and magnesium especially if they've been advised not to take calcium or magnesium. by psychic consultants who say they're not needed.
Your doctor can learn from us about post-op remineralisation, and required mineral and vitamin D supplements. They are not expected to supply them b 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. Many people began their PHPT journey with low vitamin D and/or magnesium. Please direct them to this site.
We created a summary of the guidelines and sent copies to all NHS Trusts on 31 May 2019. Many failed to listen and here we are... I designed a new leaflet in June 2023, available in packs of ten or more. One surgeon described it as 'strident'. Hmm, we've seen his surgery outcomes. Please see our contact page for details of the leaflet.
Age should never be a factor used to rule out primary hyperparathyroidism or the need for a parathyroidectomy.
Outdated literature states 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 3.00 mmol/L might benefit from surgery. Our group statistics show many women had the disease at least 5-10 years before diagnosis, sadly some of them suffered up to 20-30 years. Statistics taken from over 1500 group members in 2018 revealed the following numbers. We know of course that doesn't represent the whole population, just those who came looking for a UK Support group.
25-34 years 6.3% 35-44 years 17.4% 45-54 years 31.6% 55-64 years 2.7% over 65 12.3% 8% were men.
We added the number of decades lost to this disease by our members, which showed a total of multiple centuries. We will never get those years back, but set out to try to make sure doctors do not rule out PHPT due to age. A new age-related concern since 2021 is that a significant number of new members have joined who are parents of/or teenagers from aged 13 to 18 diagnosed with Primary Hyperparathyroidism. We can only speculate about the reason, but we would appeal to parents to consider taking their teens for blood tests; calcium, PTH, vitamin D & magnesium, if their teens are experiencing increased lethargy, joint paint, and cognitive dysfunction. Two parents and their teenagers have written about their experiences on our Case Stories Page.
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?
-
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.
-
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.
-
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.
-
We want to see magnesium tested routinely for PHPT patients before and after surgery. Going into surgery with low/below range magnesium is a predictor for the paradoxical block of PTH by hypomagnesemia, which often leads to patients requiring readmission or delayed discharge after surgery. One third of parathyroid patients will experience a drop in magnesium on day one after surgery.
'Guidelines for the Management of Asymptomatic Primary Hyperparathyroidism: Summary Statement 2014'
The Fourth International Endocrine Workshop Guideline indicated in table one that only people under fifty were eligible for surgery. The same was also quoted in the Hammersmith Endocrine Bible. Both were quoted to our members, condemning over fifties to an increasingly poor quality of life, impacting NHS resources dealing with 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 NICE guideline NG132 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 states PHPT is most prolific in postmenopausal women should ring alarm bells in doctors' and endocrinologists' thought processes if they refuse treatment or referrals based on age. In most cases, it's the patient who has to reason this point in their fight for surgery, to halt the progressively degenerative nature of PHPT, often to enable them to continue working until the age of retirement, rather than face the risk of heart attacks, 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 2.9 mmol/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 life changing.
The Fourth international Endocrine Workshop Guidelines did 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.'
Normocalcemic PHPT was mentioned in the NICE Guidelines (although not until page 15), and they note the level of calcium 2.5 mmol/l to compensate for this, but then recommended against treatment until calcium is greater than 2.6 mmol.
Imagine calling a gas engineer because 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 that normocalcemic PHPT patients do benefit from surgery. Numbers of such (brilliant) surgeons have increased in the last three years, but I wont be satisfied until they ALL do - SJP.
We have seen many successful surgical cases with levels below 2.5 mmol/L. The guideline committee omitted a vital explanation of the negative feedback loop of calcium and PTH and how vital it is for doctors to understand this 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://onlinelibrary.wiley.com/doi/full/10.1002/jbmr.4677
The OK/Good News:
-
5.1.1: Serum calcium >1 mg/dL (0.25 mmol/L) above the upper limit of normal.
-
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?)
-
In patients with asymptomatic PHPT, we recommend surgery to cure the disease (strong recommendation/high quality evidence).
The bad news:
-
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. We obtained alarming figures from one hundred NHS Trusts with statistics for cardiovascular events with hypercalcemia. Having seen population based studies about cardiovascular risks to normocalcemic PHPT patients (of course, PTH isn't recognised as a warranted test with normal range calcium at many NHS Trusts throughout the UK, whatever the reason i.e. PPIs, steroids, metformin, HRT)
The really annoying bad news:
-
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 surgeons in many areas operate on patients from 50 to 90+?
We asked members in 2019, 'Have you had other surgeries believed to be caused by untreated PHPT?'
-
shock Wave Lithotripsy (ESWL)
-
Ureteroscopy
-
Percutaneous Nephrolithotomy (PCNL)
-
Ureteric Stent
-
Cholecystectomy (removal of gallbladder)
-
Hysterectomy
-
Lumpectomy
-
Miscarriage/stillbirth
-
rods, plates or pins for bones
-
Other
17.5%
22.5%
2.5%
20.00%
32.50%
32.5%
5.00%
20.00%
7.50%
37.50%
The consequences of delaying a parathyroidectomy is costly to the NHS and has a detrimental effect on patients' life quality. 40% ticked given options, a further 37.5% ticked alternative surgery showing a significant 77.5% of operations that may have been avoided with a timely diagnosis of PHPT.
We have members who have endured up to 30 years of invasive procedures for painful kidney stones which have ceased production after a parathyroidectomy.
Pregnancy: Hyperparathyroidism during pregnancy is associated with high rates of miscarriage, stillbirth, pre-eclampsia, premature birth and neonatal tetany. We have seen cases in our group sadly of all of the above, which is why we would like to see routine testing for PHPT in the early stages of pregnancy.
Parathyroid hormone should be tested in EDTA to ensure stability and accurate results.
Parathyroid hormone is unstable in serum and should be tested using EDTA, without exception. This is more commonly a lavender blood vial. Whether a patient, phlebotomist, or doctor, please check that PTH is tested under the right conditions to avoid a misdiagnosis. PTH should be drawn into a full blood vial, after calcium to avoid contamination of calcium by EDTA, which can falsely lower the result. The filled vial should be gently rotated 8-10 times to mix the blood with the preservative. The following twelve NHS Trusts are still not using EDTA vials whilst other Trusts and the NHS site specify EDTA.
-
North Lincolnshire & Goole
-
East and North Herts Trust
-
Torbay
-
Wiltshire
-
Guys and St Thomas,
-
Wirral
-
Scunthorpe and Gainsborough
-
Tameside
-
Bupa Cromwell, London
-
Central Lancashire
-
Morecambe Bay
-
Plymouth
-
Salford Royal
PTH = EDTA
It took over three years to convince UHDB NHS Trust to change to EDTA. It was quite a battle.
At least now their PTH results are accurate, though five years on, there is no improvement in their diagnostic skills.
If PTH is not tested in a full EDTA vial, and will not go directly to the lab for testing, show your doctor this section and ask them to specify EDTA on the blood request form. Be aware that prescribed medications including estrogen therapy, steroids, PPIs, bisphosphonates, and biotin can affect calcium and PTH results as can hypomagnesemia, and malabsorption.
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 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 hoped the remaining Trusts on our list above would also make necessary changes but no change as at February 2025
Symptoms of PHPT can vary. For many they become worse due to the length of time left untreated. By the time many people are diagnosed due to symptoms, they will have had PHPT for some time. Studies describe symptoms presenting from five years before a biochemical diagnosis. Initial symptoms are commonly 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.
Symptom Surveys; 100 people in 2016
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
Our 2019 survey showed a greater proportion of people were diagnosed coincidentally rather than based on symptoms alone. Whilst fortunate for those surprised to find they have PHPT diagnosed before it took a toll on their health, but five years on, I feel a new survey might tell a very different story. Many of our members are denied a diagnosis or even appropriate blood tests because doctors mistake their symptoms for 'something else', anything else it often seems. Waiting times for surgery in 2024 often range from two to four years. Some of our members have waited even longer.
NICE guidelines 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 endured years, even decades from crushing fatigue, debilitating joint pain, cognitive dysfunction mimicking dementia, fractures, sepsis, stones, repeated TIA, 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 3.00 mmol/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. 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. 2019 Study 'Parathyroidectomy improves cardiovascular risk factors in normocalcemic and hypercalcemic primary hyperparathyroidism': https://rdcu.be/d03Er
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.
-
I had to give up work (30)
-
I have had a lot of time off work/I worry I will lose my job (36)
-
I am afraid of my own mind due to confusion & have become socially withdrawn (46)
-
I feel I am letting down my family/they do not understand me (63)
-
I have lost a lot/all of my friends (20)
-
I have no quality of life other than existing/waiting (46)
-
My doctors do not understand. They say I am just depressed (29)
-
The only people who understand what I am going through are in online support groups (60)
-
I feel lost, isolated and lonely (34)
-
I feel I have aged before my time (83)
-
I feel like I am dying (31)
-
Reading post op stories is the only glimmer of hope keeping me going (47)
-
Every day is the same. I wake up in pain, I go to bed in pain (51)
-
I cant sleep at night due to insomnia, pain or needing to urinate, so I am exhausted all day (66)
-
Other (15)
Normohormonal Primary Hyperparathyroidism (NHPHPT)
NHPHPT is a recognised clear distinction of PHPT, yet not by all doctors, surgeons or endocrinologists; difficult to comprehend when there is so much evidence. People with Normohormonal PHPT, (elevated/high normal calcium with inappropriately suppressed parathyroid hormone), are still greeted with blank medical faces and offered no explanation if PTH is within the range. Many hospital labs are recognising it on their blood results, although not by its name, whilst they refuse to acknowledge people can have NCPHPT with normal calcium and elevated PTH (rational by NICE is the average £8 cost of the blood test).
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 3 cm x 1.5 cm adenoma removed. HRT was suppressing her calcium level to 2.61 with a PTH of 4.9.
Helen: 'After a four 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 appointment 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
I also had normohormonal PHPT. See the result of a blood test indicating PHPT in 2011. Adjusted calcium 2.79 with normal parathyroid hormone level 48 (15-65). Calcium 2.91 had somehow been missed in 2006 and 2008, so PTH wasn't tested.
I had a 700 mg 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. I'm 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:
You may wonder why we mention magnesium so often, and boron. (found in highest content in parathyroid glands and bones). The benefits and improvement to symptoms are often reported by our members. Some of our pre-op symptoms are actually not directly caused by primary hyperparathyroidism, but by a need for magnesium, boron, and vitamin D. PHPT can cause low magnesium. Many medications can also reduce serum calcium and magnesium. The same applies to people post-op as well as pre-op. Please ask your clinicians to test serum magnesium. It is a cheap test. Occasionally we see people who have high magnesium. This may indicate a very good diet rich in magnesium, but it could also indicate FHH, which is still quite rare, but for the sake of a 57 pence blood test (NHS), it's worth checking.
A parathyroidectomy can halt many symptoms of primary hyperparathyroidism, but it doesn't miraculously correct magnesium, vitamin D, and boron levels. Some people feel amazingly well after surgery, but as weeks or months go by, they begin to notice some symptoms returning like muscle fatigue or cramps. It's very likely those symptoms are actually due to insufficient magnesium or vitamin D. We believe patients will likely benefit from taking vitamin D and minerals for life. It is so important to maintain both levels.
If you have diabetes, hypothyroidism, or high blood pressure, or you are taking omeprazole or cinacalcet, then you likely have hypomagnesemia or low levels of magnesium. If you have insufficient vitamin D, magnesium, and boron, it's likely you will feel 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', or the many studies posted in our group. Here's just two examples;
'The serum levels of parathyroid hormone and magnesium depend on each other in a complex manner. The secretion of parathyroid hormone by the parathyroid is physiologically controlled by the serum calcium level, but magnesium can exert similar effects. While low levels of magnesium stimulate parathyroid hormone secretion, very low serum concentrations induce a paradoxical block.'
https://link.springer.com/article/10.1007/s00268-020-05425-1
'Serum magnesium decreased significantly following parathyroidectomy for PHPT and nearly a third of patients developed post-operative, mostly mild hypomagnesaemia.'
If you don't wish to join our groups to read the files, please do your own research. You'll likely be glad you did.