A lady who had her parathyroidectomy five weeks ago, shared an update about her busy weekend, and also a post which came up on her newsfeed from a year earlier which had been written by her husband Dave Joyce. Its not often we hear from husbands' telling us what their wives endure. More typically we have wives join us to support their husbands. So this blog is dedicated to Gerri and Dave Joyce. Thanks for sharing with us. Gerri: 'This just came up in my memories from last year. My husband posted it on his Instagram and Facebook so I’ll copy it below. I'm delighted to be 5 weeks post op. We wen ..read more

Long overdue, but here it is. We hope this leaflet will be shared far and wide with clinicians we feel will benefit from reading it. As usual, there is so much information to squeeze into a fairly small space, but I think we've done a good job. As included on the cover of my book, 'It's Not All About the Levels', I've added these examples below in the hope clinicians will relate them to how our calcium is regulated and impacted by parathyroid hormone, vitamin D and magnesium. I've included six pages of information briefly covering; Normocalcaemic Hyperparathyroidism, EDTA, Negative feedback l ..read more

At a recent meeting with a representative from The Royal Derby Hospital, myself and a colleague were told they 'firmly advocate the 'Watch and Wait' process for patients with Primary Hyperparathyroidism because it works well with prostate cancer'. When my colleague asked what they are watching and waiting for, the response was; 'for calcium levels to increase.' My colleague explained that her calcium had remained high normal for twelve years before it increased, yet her PTH has been elevated a good while and she has osteoporosis and kidney stones. She also has MEN1 and only one remaining parat ..read more

Just when we thought there was a chink of hope for wider recognition in the UK of Normocalcemic Primary Hyperparathyroidism upon hearing that BAETS hosted a webinar on NCPHPT, we found out that the astonishing rumour of the upper bracket of normal range PTH levels being raised are actually TRUE! We have yet to find out who has sanctioned this devious and highly unethical change. The outcome, of course, is that even fewer people will be diagnosed with normocalcemic primary hyperparathyroidism. Despite published studies dating back as far as 1969 stating the cardiac and skeletal risks of normoca ..read more

Primary Hyperparathyroidism (PHPT) is a complicated name for an extremely common, yet widely under recognised and misdiagnosed endocrine condition. Parathyroid glands regulate calcium in our blood in the same way a thermostat regulates temperature. When our blood calcium becomes too low, parathyroid glands stimulate the release of calcium from our bones, to bring our calcium levels up. When blood calcium becomes too high, the parathyroid glands stop stimulating the release of calcium from our bones. This perpetual motion occurs every day of our lives. If our boiler stops regulating temperature ..read more

One hundred letters were sent to Sir Simon Stevens the CEO of NHS England on 15th March 2021 detailing years of misinformation and misdiagnosis throughout the NHS. We also wrote to Professor Amanda Howe at RCGP. One of our members living in Northern Ireland wrote to Robin Swann, The minister for Health. His response was appreciated. As we anticipated a very poor response, I decided to publish the letters. To read them and the responses, One Hundred Letters can be bought on Kindle or paperback; Please ensure you buy the amended editions with the pink and purple covers! https://www.amazon.co.uk ..read more

I had my second parathyroidiectomy on 11 May 2021. I had an upper left, small adenoma removed in Oxford by the marvellous Mr Shad Khan, nine years after I had a large left adenoma removed in Sheffield. My levels were biochemically normal, but I'd had normohormonal PHPT recorded in 2011/12, and reported by Dr Larian in 2018, after he looked at my historic levels. #ItsNotAllAboutTheLevels Sallie ..read more

So much has changed in the last twelve months. I am hoping a positive change this year will be increased awareness of formerly denied concepts about normohormonal and normocalcemic PHPT. They are both real, they are both just as devastating to health as hypercalcaemic PHPT. Up until very recently hardly any doctors took vitamin D levels seriously. Many hospital labs refused to even test vitamin D. It took a pandemic to change those views as well as reading some research. I hope doctors and surgeons will read our recent case stories to open their minds to classifications of PHPT that we have be ..read more

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