Sallie Powell
@SpSallie
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Hyperparathyroid UK (Action4Change): Patient action & support group. Join us on FB.
Derby. UK.
Joined July 2014
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'Failure to Diagnose and Treat Hyperparathyroidism Among Patients with Hypercalcemia: Opportunities for Intervention at the Patient and Physician Level to Increase Surgical Referral.'
2019 study. Five years on, UK improvements are still insignificant.
.
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@SSampher
@NadiaWhittomeMP
This person setting fire to the British flag wearing colours of the British flag and a NIKE garment who reportedly practice slave labour....
10
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161
@BAETS_UK
Appreciate how busy you are and how time consuming updating websites can be. Pics below from your site today. No audit for 4 years is piling pressure on already high volume surgeons. Please give them a break after your Greek break and help spread the load with an audit
27
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102
Once upon a time in
#Parathyroid
Land, doctors chose a magic number, 2.85 to give everybody free surgery. How lovely. Everybody with calcium below that number had to pay lots of money. They all became very sick. Their bones broke. Some had a stroke. Some died. A true
#NHS
tale..
13
68
102
I've heard the upper level population reference range for PTH is to be increased from 7.3 to 11pmol/l. Where's the science? Is the reason because healthy ppl were found with that level, or is it to disguise
#NCPHPT
Kidney stones/osteoporosis cant be disguised
@OUHospitals
24
42
71
#Prejudice
and
#descrimination
both common practice within the
#endocrine
world when selecting which
#parathyroid
patients to offer surgery based on age, calcium & PTH levels. This destructive practice causes serious mental & physical harm to patients.
@BAETS_UK
@TheEndoSociety
11
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60
As a heads up to
#parathyroid
surgeons, many of our members (your patients) will be asking these questions at their first appointments if you would like to have answers prepared. Thank you
1
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60
A lady had a 1 cm adenoma removed yesterday; 'primary
#hyperparathyoidism
destroyed my relationships, my life. The gaslighting drove my loved ones away, convinced them it was all in my head. Ppl saying, 'you're better off without them', didn't experience this 20-year trauma'
4
29
59
For all the doctors and hospital labs refusing to test
#parathyroid
hormone if
#calcium
<2.6 despite the presence of primary
#hyperparathyroidism
symptoms. Please remind yourselves of these every time you save the
#NHS
the cost of a blood test:
4
38
51
A lady with persistent PHPT, 7 years after 1st surgery: 'Much change is needed in the medical world about
#normocalcaemicPHPT
. It changes who you were, takes you over completely. You become a hermit, frightened to go out alone, as you're no longer a functioning person anymore.'
1
31
48
We were happy to hear about an endo in Manchester who asked her patient if she'd heard of . She said our site is informative, and she believes in what we do. There is hope. The patient laughed and acknowledged being a member. We believe in ourselves, too.
0
24
45
We're hearing from members who've had to resign from work due to chronic overwhelming fatigue and crushing headaches caused by
#hyperparathyoidism
. They face 2-10 years declining & fighting for a diagnosis, or up to 3 years waiting for surgery, their lives ruined by the
#NHS
5
23
47
@sammwhiting
@monisha_rajesh
According to Lord Sumption it was their choice to take that risk. I found his opinions quite sickening
1
0
37
I don't often post about my personal life, but I had to say goodbye to my beautiful darling girl Bella aged 10 years,Thursday 26th Aug due to kidney failure. I really wanted to share how beautiful she was inside and out. Bella you were so loved ❤️ ❤️
23
0
42
A lady 26 weeks pregnant diagnosed with hyperparathyroidism. She also has hypomagnesemia and vitamin D deficiency. These were picked up by several members who saw her levels, but not the clinicians whose 'care' she is under... why not?
.
0
27
43
A member shared this image today found in a dictionary from her nurse training days in 1974.
Fifty years later and we're still trying to convince some doctors,
#PHPT
causes
#osteoporosis
#hyperPARAthyroidism
#Parathyroid
#Calcium
#Bones
#Fracture
5
25
43
Primary
#Hyperparathyroidism
in the UK. Suffering patients are often forced to wait for calcium to reach 2.85. NICE guideline recommendation 1.3.2 says ignore all the above and do the opposite. It's THE best recommendation. Quote it back to your doctors to get the help you need.
1
23
41
One of our members just said 'the decision to increase the PTH upper level bracket will kill people' Sadly, she is correct. We've already seen it happen. We deserve to know who sanctioned this condemnation. Maybe
@RaduMih67120063
or
@DrNeilGittoes
might explain the 'science'
9
29
39
We've seen several members this year readmitted into hospital within days of a
#parathyroidectomy
needing IV
#magnesium
and
#Calcium
. If only we could convince all
#parathyroid
surgeons to be aware of pre - and post-op magnesium, please.
1
27
38
So many of us after
#parathyroid
surgery will look back with bewilderment at the last decade or even longer before our surgery and ask, 'Why didn't my doctors listen to me? How could they let me get so poorly before agreeing to a referral for surgery?...
0
19
40
#oncall
please would you talk about
#PrimaryHyperparathyroidism
? One of the most common yet largely unrecognised endocrine diseases. We need media attention to raise awareness please:
7
25
35
I'm interested in hearing from any clinicians who've had primary
#hyperparathyroidism
. I would like to ask, 'Did you wait until your
#calcium
exceeded 3.00mmol/L before committing to surgery, or did you pay privately or convince NHS colleagues to operate much sooner? Thank you.
3
23
38
A lady in her 70s told us she filled a sheet of paper listing all her symptoms of hyperparathroidism. She cried, reading the completed list. She asked how we are expected to live like this year after year? The only cathartic relief she felt was watching a doctor typing them up.
1
21
37
Don't rely on the scans! Astonishing feedback from our member who had
#parathyroid
surgery yesterday due to repeated admission with calcium >3.00, despite negative ultrasound, pet choline, and CT scans. A hidden adenoma 101 mm was found and removed. Photo for perspective..
4
25
38
We have five ladies this week hopeful of beginning recovery after
#hyperparathyroidism
in
#Dudley
#Glasgow
#Lancaster
#Nottingham
#Walsall
Such a shame there are so few when there are hundreds waiting for surgery barely keeping it together..
4
20
35
.
#Hyperparathyroidism
,
#parathyroid
. Need advice, support, to vent, cry or share your journey? We're here for you
0
10
26
Imagine crying to doctors about agonising bone & muscle pain, inability to work, sleep, walk, drive, or wash, kidney stones, stents, sepsis, fearing dementia and death, to be told 'There is a cure, but your calcium isn't high enough yet'. The reality of
#Hyperparathyroid
patients
4
17
31
A lady told us,
"I've been suffering for 8 years. I was finally diagnosed with
#hyperparathyroidism
five years ago and referred to a surgeon in August. I've yet to meet them. I don't want to die whilst I'm alive. That's how this disease makes me feel... "
2
19
34
Patients with primary hyperparathyroidism are told there are many very sick patients with very high calcium who need to be treated urgently. There are also many very sick patients with calcium not so high who need to be treated urgently. Some will have heart attack/strokes & die
2
20
33
Treating
#Osteoporosis
caused by
#PrimaryHyperparathyroidism
with
#bisphosphonates
increases fracture risk. A
#Parathyroidectomy
is by far a better treatment for those patients.
3
25
33
I will never understand why doctors choose to do nothing for a patient with a progressive disease until the patient has required several ambulances and feels death is approaching. That's
#PrimaryHyperparathyroidism
A curable disease ruining many lives until offered surgery.
0
9
31
@Haggis_UK
Our members also thought to look for the best in people, so 100 letters were sent to Sir/Lord Simon Stevens 15/03/21 asking him to help update
Our letters were ignored.
3
13
32
A member asked if blurred vision is a symptom of
#hyperparathyroidism
& do our doctors know about it. Many people replied yes, and no. An endo
@UHDBTrust
told me spitefully, "Get an eye test. I expect DVLA would like to know this."
My vision corrected after a
#parathyroidectomy
.
3
21
32
An
#endocrinologist
told a member 'I can’t possibly have these symptoms because my calcium (at 2.9) was not high enough to cause problems.He also said surgery would be a waste of time, and it probably won’t work.' The
#NHS
employs many endocrine abusers. Invalidation is abuse.
5
21
32
Claire's adenoma removed after 18 years suffering with
#normocalcemicphpt
Her
Highest PTH was 8.00pmol/L Increasing ref range to 11.00 means people like Claire will not get the
#parathyroidectomy
that changed her life. Her young children have a new, healthy, happy mummy.
4
20
31
As I was born 56 years ago today, I'm taking a day off from griping about the abysmal treatment of
#hyperparathyroid
patients.
So here's a picture of my cat Dixie instead.
Business as usual tomorrow..
11
3
32
#Hyperparathyroid
patients are often mistakenly regarded as non urgent because doctors are largely unaware of the increased risks of sudden cardiac death & ischeamic strokes associated with elevated
#PTH
Poor education leads to poor patient outcomes.
2
20
31
@NICEComms
I was asked by NICE to email re harm caused by NG132 which fails to account for endos ignoring 1.3.2. A lady with calcium 2.9 has been denied scans/surgical referral by endo 18 mths, using your guideline to declare no intervention necessary as no end organ damage yet!
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27
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Oh, another endo with two patients whose calcium is below 2.85mmol/l..
Not yet... you can just wait in a very dark place until your calcium gets much higher...
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12
29
Urgent Vacancy; endocrinologist who's had primary hyperparathyroidism. The ideal candidate will have suffered 5-10 years undiagnosed, passed at least one kidney stone, endured the 'watch & wait' NHS scenario, fought for surgery, then got his life back. Patient empathy essential
3
8
28
@OmfsWest
Thank you for sharing, though there were no surprises. I feel we are way ahead of this & other similar studies. I can offer up to 3,500 people with hyperparathyroidism prepared to participate in a new groundbreaking study. Please feel free to contact me at
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21
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A lady shared her tragic story of declining health over 40 years. Diagnosed with
#hyperparathyroidism
in 2019. CT Scan found a large goitre filling her chest. Following surgery, she is reclaiming a healthier life with newly found energy/stamina. She finally feels well. 40 years.
1
19
30
A mother's joy 13 days after Alfie's (14) parathyroidectomy: 'Today he is kicking a ball around the garden. He withdrew from all sport two years ago so seeing this again is a wow moment.' Alfie, "my head felt so heavy, that's gone! I don't feel sick now or get headaches."
0
6
28
A husband's concern as his wife's health became worse over a decade waiting for surgery. There's a happy ending eventually, but why did she have to wait ten years? This is a very typical story with Primary Hyperparathyroidism...
#newblogpost
5
9
29
The endo in
#Cardiff
who suggested a lady with elevated calcium, PTH & osteoporosis, wait another year because scans a year ago were negative... He likely didnt expect her to quote NICE guideline (NG132) surgical criteria,& refuse to suffer another painful year
#2ndOpinionPlease
3
9
28
Watson Nursing Book 1979
#Hyperparathyroidism
'The cause of an excessive excretion of parathormone is usually an adenoma...'
Yet here we are 45 years later struggling to get
#PTH
tested based on recommended guidelines by the National Institute of Clinical Excellence...
2
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29
@GreatOrmondSt
A 2 week old baby with these levels at
@SalisburyNHS
PTH 7.9 Calcium 3.21 (Oct)
3.11 (Nov) 3.33 (Also Nov) Fosphate 1.76 Urine Calcium creatinime less then 0.2 (Nov). His frantically worried patents want to know if and how you can help them. Please. Thank you...
4
24
28
Whilst many people are on a countdown to Christmas, our members are on a countdown to the publication of the first
@BAETS_UK
audit since 2019. We hope it will help open doors to surgeons who've been hidden in those years, as waiting times have increased for surgeons we know about
1
14
29
'A Normal Christmas'
A
#hyperPARAthyroid
adaptation of A Christmas Carol..
A very nice
#parathyroid
surgeon is about to experience a very different Christmas Eve after a very different year; 2020. Kindle or paperback available now:
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28
Hyperparathyroidism, Parathyroid Hormone,
Cardiovascular Disease. Hyperparathyroid UK
established 09/14 (not to be confused with Parathyroid UK)
#newblogpost
#Hyperparathyroidism
#Cardiovascular
#Atherosclorosis
0
12
28
"It’s incredibly important that we listen to & value patients’ insights and their own interpretations of their symptoms, particularly those with longstanding diseases – after all, they are the people that know what it is like to live with their condition.”
2
17
30
A simple lesson about
#parathyroid
glands, using an automatic kettle (for boiling water) as a guide. When the water boils. The kettle turns off. When
#calcium
reaches a certain level
#PTH
switches off. If it doesn't, a parathyroid surgeon needs to cut the power supply...
5
10
27
So many ignored studies... just a few;
.
0
21
31
We've been in contact with a producer from the
#BBC
looking for a person aged 50-60 forced out of work waiting for surgery. I replied we can find hundreds of all ages. They want someone waiting for a hip op though. Nobody knows what a
#parathyroidectomy
is..
@BBCNews
HUGE story..
3
15
25
NHS App appears to be out of action. No blood results entered from 11 days ago, although the results have been with a doctor since last week, but the receptionists are not clinically trained to give blood results over the phone' and no appointments are available. Brick walls..
1
16
26
Gaslighting is a fairly new term to us, yet so many
#endocrine
/
#PrimaryHyperparathyroidism
patients completely relate to the meaning, having been gaslighted for years by their GPs and
#endocrinologists
If patients can learn about Primary Hyperparathyroidism why cant doctors?
1
19
26
This may come as a surprise to clinicians, but these days, all your patients talk to each other on social media, in support groups. There are many groups, with thousands of patients. Integrity will go a lot further than medical gaslighting. Either way we hear all about it...
3
7
26
The
#endocrinologist
at
@OUHospitals
who told a GP that a patient's calcium of 2.79 isn't high enough to cause symptoms. Even at an NHS Trust with a brilliant
#parathyroid
surgeon, we see clueless endos. Sadly the NHS is overwhelmed with them. Negligent, ignorant, causing harm..
3
6
26
Lots of laughter and positivity in our group today after we welcomed a
#parathyroid
surgeon into our medical group who recognises and operates on
#normocalcemic
patients. The tide is definitely turning for
#NCPHPT
at last. Worth celebrating 🍾 👌 ❤️
1
6
27
Yet another story of
#parathyroid
neglect. A lady who shattered her wrist, had a kidney stone that tore her urethra, calcified stent & sepsis. Records show hypercalcemia in 2013. Why has she only just been referred to a surgeon? Likely because 'her
#calcium
wasn't high enough'...
3
10
26
Another GP told his patient calcium 2.65 & PTH 14.9 isn't high enough to cause her symptoms. This is completely untrue.
#Hyperparathyroidism
can cause vascular & kidney calcification, cardiac arrest, stroke & SCD, so why would it not cause symptoms?
#ItsNotAllAboutTheLevels
0
10
26
We've heard from a member this morning who had a large parathyroid adenoma removed last week after 8 years suffering. We were told they spent over a month in ICU last year after kidney stones caused septic shock/pneumonia. Why is hyperparathyroidism still trivialised by the NHS?
0
21
26
The calcium load test they get excited about at Imperial NHS Trust. It should be compulsory for those doctors to pass a kidney stone, then analyze it; the purpose of the test, created in 1975. It's 2023, boys. If you can't differentiate between primary & secondary yet, give up.
1
5
26
#Hyperparathyroidism
in the UK. Many surgeons only accept endocrine referrals but still don't recognise the huge numbers of fraudulent endos who are bluffing that they understand PHPT, when the truth is they don't have a clue and still follow guidelines from over fifty years ago.
1
15
25
Heart Attack/stroke/TIA fatalities recorded 2019-2022 at 66/119 NHS Trusts = 40,709. Data not supplied from 53 NHS Trusts, but potential average of over 73,000 deaths. 8,361 had hypercalcemia. Unnown how many had elevated PTH as not routinely tested.
2
22
25
Talking to a lady in Belfast tonight who before her
#parathyroidectomy
in May, asked her surgeon to locate all glands. He said it wasn't needed. Her PTH remained high after surgery. It has increased further. He wants repeat bloods in November. It won't reduce. She needs a re-op.
2
6
22
@itvnews
@MattHancock
Letters by 100 patients suffering from
#hyperparathyroidism
were sent to Sir Simon Stevens 03/21, pleading for help. They were ignored, so I published them.
See cardiac events/deaths 2019-2022, which will also be ignored:
4
16
25
Our online support group offers the following for free, often unavailable on the
#NHS
- Advice/Support/Time
- Preparation for appointments/scans, answers to all questions
- Up to date research/guidance
- Factual statistics based on thousands of outcomes.
- Post-operative care
0
9
25
A lady told us she paid for a
#parathyrpoidectomy
as she already has
#osteoporosis
, so the
#NHS
wasn't an option for her. If the NHS had acted sooner, she likely wouldn't have osteoporosis in the first place.
#Hyperparathyroidism
3
16
25
Q.What's the difference between these two ladies? A.Three months, and a
#parathyroidectomy
! Jean was 86 years young when she had three hyperplastic glands removed by
@ShadKhanSurgeon
in Feb 21. She had been confused and sleeping up to 17 hours pre op. At 87 she has her life back
3
2
24
A lady paid £6,000 for a
#parathyroidectomy
yesterday. She'd been told she didn't have primary
#hyperparathyroidism
based on her levels by her local NHS. She had 3 glands removed measuring 12/11/6mm. We hope her NHS Trust will learn lessons for other patients & refund the £6k...
3
5
25
We are so tired of hearing doctors dismiss very poorly patients based on the fact they have no idea how
#parathyroid
glands regulate calcium. The
#NHS
needs a rocket up it's backside about
#PHPT
I hope my book will be that rocket. I'm aiming to get it published by the weekend.
2
9
24
#Parathyroid
hormone (PTH) is a novel cardiovascular biomarker which is particularly useful for detection and assessment of heart failure (HF).
0
8
25
Heard
@OUHospitals
have increased
#PTH
range to 11.00pmol/L & told a patient it means she never had
#PHPT
despite 2 adenomas removed (largest 16mm). Will Oxford increase speed limit from 30 to 60mph then say they they dont have any speeding issues? Devious mismanagement/trickery
7
9
24
Sharing a lovely post from a member today; 'My day has been made. So happy. Walking along and the lady in front said. Let this couple pass as they are faster than us. So pleased when I think that a year ago I couldn't walk and had to use a wheelchair. I'm just over the moon'
0
6
23
Asked about my post
#parathyroidectomy
benefits; I no longer feel l I'm hurtling towards dementia. My anxiety, racing mind, joint & bone pain are all gone. I sleep well and dont need an afternoon nap (4hrs). I have bladder control! Its like night and day, I'm a different person!
1
1
22
I can highly recommend one of these for vastly improving quality of life. Meet Dixie aged 11 weeks, In just two days we're best friends and my heart is full ♥️
7
0
23
Q:What's the difference between these pictures? A: a
#parathyroidectomy
. This is David after his surgery and one year later. High calcium & kidney stones op in 2008. He feels physically & mentally stronger, sleeps well and finds his job much easier. Twelve tough years though 😢
1
5
24
I couldn't find an appropriate word for tragic hilarity, but this 1969 study sums up why I was searching for such a word to describe the 2011 study. Normocalcemic primary hyperparathyroidism is NOT a new entity and should NOT be dismissed by
#Endos
as
#MildHyperparathyroidism
1
14
25
@BreastCancerNow
@loosewomen
@SarahTheDuchess
@ITV
When you discuss menopause, please advise all women to get hyper-PARA-thyroidism tested/ ruled out. Symptoms between the two are often confused. Thank you.
3
12
22
@joelycett
watching 'Got Your Back' feeling a NAJDA nomination would be richly deserved by Sir Simon Stevens & Professir Amanda Howe for ignoring 100 letters written to them pleading for help. They represent 1000's of ppl suffering needlessly. Please help?
14
21
24
A lazy GP told his patient for 13 years that her symptoms were peri-menopause. A new GP spotted red flags of broken spine, kidney stones, depression, and anxiety, then found 13 years of elevated calcium and PTH. Referred her to an endo. Parathyroidectomy due in June...
3
4
24
Very disappointed this evening to hear that a respected surgeon told one of our members that
#hyperparathyroidism
doesn't cause cardiac disease. Medical gaslighting is usually as unintentional as the fight or flight response of a patient about to be discharged, uncured...
5
7
24
A retired lady waiting for parathyroid re-op; 'how do those employed, cope when inner balance is constantly disturbed and keeps shifting. Employers and doctors have no conception of the altered person this disease makes us. Only others with
#hyperparathyroidism
understand this.'
3
7
23
An Edinburgh lady is facing losing her career as a teacher due to health related unreliability since before 2018. A surgeon said '
#normocalcemicPHPT
is not a thing'. A GP seeing a neck lump requested an ultrasound, which found a very big adenoma.
#NCPHPT
IS very much a thing!
2
5
21
The diabetes consultant
#Cork
🦕 🦖 who took €180 then told a lady with elevated PTH & borderline osteopenia/osteoporosis that 'bone loss needs to be much worse, only 2 surgeons operate on NCPHPT, both in the US.' Wrong, there's at least 9 NCPHPT UK surgeons inc 1 Dublin, 1 Cork
1
15
24
In 2013, I contacted 6 eminent parathroid surgeons expressing a wish to raise awareness of hyperparathyroidism, a need to re-educate endocrinologists & concern re large numbers of undiagnosed patients. 10 years later, waiting lists for surgery up to 3 years, & endos non the wiser
4
8
23
I spoke to a lady this morning whose mum needs a
#parathyroidectomy
@UHDBTrust
. She said her mum's in her 70s, so she thinks they're not bothered. She's had
#hypercalcemia
many years,
#osteoporosis
, kidney stones, gallstones,
#CVD
. All preventable had she been operated on sooner
2
6
20
We're all relieved tonight to hear a mum say, 'our fight is over'. Her 14 year old son finally referred urgently to a parathyroid surgeon after many distressing months and disbelieving clinicians saying 'it can't be, he's too young' Sadly he isn't. Not genetic either..
2
5
23
Lady due a
#parathyroidectomy
in
#Manchester
; calcium 2.69, PTH 11.2, vit D 84, osteopenia, & positive scan, moved to
#Cornwall
where the MDT decided against surgery because calcium came back at 2.59. The moral of this post is do NOT move to Cornwall with
#hyperparathyroidism
1
6
20
Journal of neurology research 2020
#Parathyroid
hormone.
#Hyperparathyroidism
#IschemicStroke
Extracranial
#atherosclerosis
1
6
23
I often feel like a bamboo detox patch you place on your feet at night, absorbing all the bad news from the NHS. I just messaged a lady checking her surgery went ahead in
@nottmhospitals
today. She was sent home last Monday & rebooked. Same thing today. no new date. It's numbing.
1
13
23
A new member introduced herself,
'Thanks for accepting me, I've been diagnosed with primary
#hyperparathyroidism
for over 7 years. I've finally had my pre-op. I have every symptom, and my life has been ruined.'
Why does the
#NHS
deny treatment until our lives are ruined?...
2
13
24
When a member shows a range of post-op calcium & PTH levels over the two years since her
#parathyroid
surgery. They're all top of the range, non suppressive. She has returning symptoms. You know she knows you're going to say, "I'm sorry, you're not cured." It's still hard to say
0
12
23
We believe post operative care & recovery is vitally important. If we could teach clinicians just one valuable lesson, it would be to research the importance of minerals associated with
#PrimaryHyperparathyroidism
#magnesium
is crucial. Why they dont know what we know?
1
7
22
Samantha shared this very positive update yesterday, nearly 6 months after
@waghorn_alison
operated to remove a
#parathyroid
adenoma. Pre op calcium 2.71, kidney stones. She has her life back. This is what we're all fighting for.. ❤️
1
3
23
Just seen 2 letters from endos who do NOT understand primary HPT. Both wrote 'mild
#hyperparathyroidism
'. One lady referred to a surgeon with 3 year waiting list, the other to be monitored in 6 months despite elevated cal & PTH. Sad spectators again, of slow-motion horror shows.
2
16
22