Lisa Marie discusses her own journey with hyperparathyroidism, which highlights the challenges of getting diagnosed or being dismissed and gaslighted.

This episode also covers the additional challenges women in particular might face, simply by being women or being women of a certain age, not to mention some of the inappropriate statements made by healthcare professionals during many of the consultations she needed.

ABBREVIATIONS:

• HPT - Hyperparathyroidism.
• nHPT - Normocalcemic Hyperparathyroidism
• PTH - Parathyroid Hormone Level.
• ng/L - The blood chemistry measurement.

CLARIFICATIONS:

Hyperplasia verses single adenoma.

• Hyperplasia affects all four glands and the glands become enlarged.
• A single adenoma usually a benign (non-cancerous) tumour of the gland.

RESOURCES

The information shared in this podcast has been provided by several sources. These include outcomes from personal consultations with medical professionals, my own experiences, published research by expert medical professionals, and the NHS website. Please click on the links below for more information.

Hyperparathyroidism

https://www.nhs.uk/conditions/hyperparathyroidism/

Normocalcemic Hyperparathyroidism

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7923978/

Hyperparathyroidism Support & Information - Patient to Patient Support Group

https://www.facebook.com/groups/406980976340533

NICE Guidelines

https://www.nice.org.uk/guidance/ng132

DISCLAIMER: Lisa Marie is not in any way medically trained, she is not providing medical advice, and the information that is shared is in no way a substitute for qualified medical advice. If you believe you may have this disease, then you must seek the most appropriate medical advice, this podcast aims to help you navigate your way to the right medical support and diagnosis.

It started a few years into my marriage. I started noticing that things were not quite right. Things just seemed a little bit off and I just couldn't put my finger on it. I went to my GP time and time again with symptoms and I was often told it was my age. Perimenopause. Or the menopause. At this point, I wasn't even 40 and I was never tested for those assumptions.

By my mid forties, I was clinically diagnosed with the menopause, and again, no tests for those assumptions. By

2007, I was back and forth to the GP regularly having experienced a host of symptoms. And being so ill, I had to take time off work. 2008, I was rushed into hospital whilst on holiday in Ireland with acute kidney stones and a warning back to my GP in the UK, which stated acute kidney injury warning.

I didn't know about this. I had no idea that the hospital in Ireland had written to my GP. I found that out when I requested my medical records at a much later date. Nothing was done about this. There was no follow up, no letter from my GP, no call from my GP and no further examinations or investigations were undertaken.

After another visit to my GP and relaying yet another regular And a particular type of symptom, quite a delicate symptom. I was suspected of having Crohn's disease. I was tested for Crohn's

disease in 2017, some 10 years on after my initial going to the GP in 2007 and 9 years after my hospital admission in Ireland. I was tested for Crohn's disease in 2017 and my calcium showed above normal range. So it wasn't Crohn's disease. I was then referred to an endocrinologist who I saw in November 2017. I was told after a neck examination that nothing was wrong but my vitamin D was low. To take a vitamin D supplement and that I would be seen again in four months.

[00:03:00]

upwards. At that point, I think they were still planning on monitoring me, but my doctor did mention the possibility of an ultrasound and a Sostambi and I asked if those could go ahead.

In fact, I actually had an MRI and an ultrasound scan, which showed two clear growths on two of my parathyroid glands. Because we suspected that there may be some familial history . I was tested for a genetic variation, MEN one and two , by the endocrine doctor, and that proved negative.

[00:04:00]

But it was postponed on the day of the surgery as I was there waiting for the surgery to go ahead as I was told that I

Two enlarged glands were removed and sent to the laboratory for testing which is the standard protocol I believe. Whilst in surgery, a thyroid nodule or nodules were seen and a decision to remove it was made, which entailed taking a small proportion of my thyroid.

[00:05:00]

growth on the third gland.

Four months later, I got a response to say that my D was low and to keep taking the tablets. In July 2019, further tests that I'd asked my GP to carry out showed normal range calcium, but that my parathyroid hormone level had increased significantly from its post op numbers. And at this point, we were only six months approximately out from my original surgery.

I asked to be referred to an endocrine doctor and I saw a doctor exactly one year from the day that I'd had my operation. That doctor only tested my calcium and

vitamin D and I had to ask that my PTH, parathyroid hormone level, be tested again. It had jumped up massively from the July numbers which was no surprise to me given the symptoms that I was experiencing.

From there I went on somewhat of a rollercoaster trying to get an agreement from professionals to carry out further scans I went on to have some astonishing appointments where professionals seemed to dismiss me and my symptoms, gaslighted me, And refused to accept that I have had high parathyroid hormone level with normal calcium.

In other words, normo calcemic hyperparathyroidism. One doctor that I saw diagnosed me with mild NorCal Cmic hyperparathyroidism, but no scan was imminent at that point, unless my calcium rose and he put me on a

watch and wait situation, which is not ideal as this disease can wreak untold havoc on your body.

And at this point it already had. Eventually, I asked for my care to be transferred to a more local hospital. And after a consultation with my ENT doctor, for tinnitus, hearing problems, and symptoms of vertigo, who happened to work with the surgeon.

I asked her if I should write to the surgeon with my history and was told it can't hurt. I did so and the surgeon dismissed me as having only marginally elevated PTH at 84 at the last test and told me all my symptoms were menopausal And to seek a specialist to either put me on HRT or to adjust the dose if I am on it.

I cannot begin to tell you how devastated I was. And with a family history of breast cancer, I was told that I could not go on HRT. And as

my practice nurse said, my menopausal symptoms should have at least eased by that point. For And that this seemed to be so much more than that. I have a complex family history which includes heart disease, diabetes, high cholesterol, metabolic disorder, thyroid and parathyroid problems within my family to name but a few.

With growing research into this field, there now appears to be some evidence of links between heart disease, parathyroid disease and vascular dementia. The latter of which is what my grandma died of.

Not to mention losing numerous loved ones to heart disease. So, this is just something to be aware of on the parathyroid journey. , none of those people that passed with heart issues, as far as we know, had parathyroid disease. But there is a link and evidence to state that there is some link between parathyroid disease and the heart.

So it's just something to keep in mind. So I really couldn't understand why I wasn't being heard. I was then left without any endocrine care and feeling helpless. I learned not from my surgeon, but from the post histology report that I have hyperplastic changes to the removed tissue, which I now know.

Hyperplasia To my understanding, the gland becomes enlarged it affects all four parathyroid glands rather than one single gland or glands having an adenoma,

I then went on to have normal range vitamin D and normal calcium. But this had not made any difference to my PTH level, my parathyroid hormone level. Which I was hoping it would. I've also got early onset and deterioration to my left knee. I've got

deterioration to my hands and neck. I have never been offered anything for the pain or any other medication to help.

I, at that point, had never been offered to be seen by any arthritis or osteoporosis specialist or rheumatologist to help manage my symptoms. My weight skyrocketed despite being on a plant based diet, a healthy diet and keeping as active as I could possibly keep despite the pain and all of the symptoms that I was experiencing on a daily basis. When I had raised concerns about my issues, and my worry about getting diabetes and heart disease with a particular surgeon that I'd asked to be referred to on recommendation, I was met with some shocking responses, such as, you just need to grow taller.

My husband was present at

that consultation and bore witness to it. He also insisted, knowing that I'd had two glands removed, two parathyroidectomies as they are called, insisted I sit through him sketching a sketch showing me where the parathyroid glands are located and insisted on telling me. What I already knew.

Sadly, this sort of dismissive and patronising attitude is not an isolated one. And many patients with this disease, or trying to get a diagnosis of this disease, face familiar situations. Whether they're here in the UK, or they're in another country around the globe. Luckily, one doctor agreed to send me for a second opinion for genetic testing for all the possible genetic markers, including some genetic markers that were not tested in the first instance. Thankfully, these all proved negative, but

the geneticists did advise me that they are discovering genetic of hyperparathyroidism Thank you.

And that it could be that I may fall into one of those at a later date. So it's always something to be aware of. I was completely bereft and did not know where to turn to for professional help. I raised these issues with the hospital in the hope that they could find me endocrine care. At that point I did not believe that I was cured post first surgery and with hyperplasia.

The outlook would be slightly different to those who have a single adenoma. Eventually, I found myself back under the care of the endocrine team at my local hospital. And just to put this into perspective, I have been throughout my journey seeing five different endocrine doctors, several GPs, general practitioners if you're outside of the UK. and four surgeons.

a doctor was assigned to my

care and overall I have to say that doctor has been supportive. The doctor has has regularly tested my vitamin D and calcium and parathyroid hormone level, usually on a three month and six monthly basis. That same doctor has referred me to rheumatology to rule out any rheumatological factors that may account for my symptoms and has kept an eye on my cholesterol, my HbA1c, which is my diabetic marker and my thyroid levels. Sadly, my hospital does not accept or acknowledge, I should say, a diagnosis of normocalcemic hyperparathyroidism. And it would seem that the NICE guidelines, to the layman's point of view, do not apply. does not make room for a diagnosis of normocalcemic HPT. So therefore, it appears that the NICE guidelines don't make it easy to support

this diagnosis.

I was able to contact a surgeon , who is not only an expert in what we call redo surgeries, but someone who is also very advanced in the different presentations, including normal calcemic HPT.

After confirmed blood tests I was sent for a pet choline scan and an ultrasound scan which confirmed that my third gland was now enlarged as well as spotting some angry looking thyroid nodules which my surgeon did not like the look of and advised he may need to remove the affected area of my thyroid which proved to be the case.

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symptoms. Not all completely gone, but this was the first time that I'd felt any relief in well over a decade.

Probably getting on for 15 years. Thankfully, my surgeon was clear from the outset and set realistic expectations in terms of what to expect and that as a patient with hyperplastic gland changes, the remaining gland could likely become enlarged or diseased. So the question really is, why surgery all?

Or why not take all four glands or three and a half glands in the first place? Well, the end goal is to provide you with as much symptomatic relief for as long as possible in between surgeries and that healthy glands are not removed before they need to be. It's a careful balancing act and one that needs an expert to manage it.

I now find myself three years on and my latest PTH, parathyroid hormone test

alongside normal vitamin D and normal calcium has shown an increase to 66 NG forward slash L which is just over my local hospital's cut off of 65 NG forward slash L. So just above the top end of the normal range.

Sadly, with normal calcium, this hospital does not appear to recognise this, as demonstrated in my last letter from my endocrinologist, which states, in quotes, Your PTH on this occasion is a little higher, but you are aware that we do not use one off levels with a calcium that is still nice and low to action any changes.

That was disappointing to say the least. And I would just like to note at this point that my parathyroid hormone level has been, I believe, for the last two results before this result of 66, in the high 50s

which is substantially higher than it was when I had my second parathyroidectomy and the 12 months or so following it.

Therefore excluding the GP. Parathyroid hormone test, which was done in serum and which, according to my surgeon's letter, is not the best way to test as it isn't accurate , for the reasons he mentions in that letter, namely that it needs to be tested within two hours of drawing and wasn't tested in plasma My PTH has been consistently increasing.

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would this then be grounds for actioning any further investigations?

I consider myself one of the very lucky ones. I have an expert surgeon who has continued to monitor my care and will see me for further testing when the need arises. But so many patients are paddling in circles or wading through red tape and outdated guidelines to get the answers they are seeking.

My fundamental goal is to help people to get the help, support, and answers they need by raising awareness and taking positive action for change.

Thank you for listening. Please join me for episode five, where we briefly discuss hair loss in hyperparathyroidism.