Article : 'NHS doctors brushed off our condition as menopause – what we suffer from is far worse'

[humanbean]

Article from the Mirror about women struggling to get a diagnosis of what turned out to be hyperparathyroidism. It takes many years.

mirror.co.uk/news/health/nh...

Not the best medical/health-related article I've ever read, but isn't very long.

What I particularly disliked was the repeated use of the word "claimed" instead of "said" when reporting what was said to the reporter. It implies that there are grounds for disbelief.

Caroline's condition is known as 'hyperparathyroidism'. This occurs when four glands in your neck – each no bigger than a grain of rice – produce too much parathyroid hormone (PTH).

Over time, this can lead to easily broken bones, kidney stones, excessive urination and a range of other symptoms that may appear to have no clear cause. Dr Gareth Nye, a senior lecturer at Chester Medical School, told The Mirror: "Reportable symptoms are vague and are often assigned to other diseases.

"In women with the condition it is often more likely to be [linked to] menopause which ultimately means our understanding of the real numbers of patients with this disease is likely way off. Although primary hyperparathyroidism is [common] ... it is under-recognised in the general population and by health professionals.

"Current stats place this at 1-4 cases per 1,000 although this is likely an underrepresentation."

The article continues at :

mirror.co.uk/news/health/nh...

[helvella Administrator]

A few links:

helvella - Parathyroid Links

Some links to parathyroid information.

helvella.blogspot.com/p/hel...

[Sparklingsunshine]

There was an article in one of the papers today by a British Asian lady whose symptoms were dismissed as menopause except she clearly had red flag symptoms, overwhelming fatigue, sudden noticeable weight gain around her abdomen and needing to pee more.

Turns out when she eventually got through the medical gaslighting she had stage 3 ovarian cancer. If she'd been listened to and examined earlier, rather than being fobbed off with phone calls and E consults, her treatment would likely have been less invasive and less disabling.

Her treatment has resulted in permanent nerve damage to her legs and feet. She is saying racial as well as gender sterotyping was used against her.

You just wonder how many more stories like these we are going to hear and whilst the BMA and other medical governing authorities admit there is a problem with bias and that women's care often leaves a lot to be desired, nothing fundamentally changes.

[humanbean in reply to Sparklingsunshine]

She is saying racial as well as gender sterotyping was used against her.

The gender stereotyping I can easily believe, I'm not so convinced that racial stereotyping was a reason for delayed diagnosis, although I accept that doctors will use anything they can not to diagnose women. But a relative of mine was dismissed repeatedly with excruciating pain and other symptoms and it turned out she had late stage ovarian cancer that had metastasized to other parts of her abdomen. She was white, and was trying to get diagnosed in a reasonably prosperous part of England. Her GP was treating her with anti-depressants.

The relative died three weeks after diagnosis.

[TSH110 in reply to humanbean]

How sad. It got my cousin, but she had years of treatment.

I think I read there was a reluctance to give pain relief to non white women by NHS staff so there could well be racial discrimination here by belittling symptoms

[bantam12]

Not a great article and doesn’t tell us anything we don’t already know. The problem is Hpth is fairly uncommon and the majority of Drs will never come across a case so they don’t have the experience to join the dots and diagnose it.

A diagnosis can only ever happen on test results over time, sometimes years as calcium and pth naturally fluctuate so there may be no pattern to alert the docs.

It took 2 years for me to get a definite diagnosis although I diagnosed myself way before then ! I was never told it was menopause but my long thyroid history did get in the way and delay things.

Having run a parathyroid forum for some years I know the average time to diagnose was 2-5 years, I find it slightly unbelievable that the woman in the article had symptoms and no diagnosis for 25 years, be interesting to see what tests she had and what the results were as I can only imagine her numbers were basically within range most of those years.

[humanbean in reply to bantam12]

What tests are required for a diagnosis involving the parathyroid glands?

I'm assuming PTH, calcium, and vitamin D?

[bantam12 in reply to humanbean]

Repeated calcium, pth, phosphorus and vitd along with ultrasound and Sestamibi scans.

[humanbean in reply to bantam12]

Thank you.

Edit : I've never heard of Sestamibi scans.

[Puddleperson]

My 'menopause' went on for 17 years following hysterectomy. I tried every possible version of HRT but none made a scrap of difference. Never once throughout those 17 years was there any suggestion that the cause of all my many symptoms could be due to something else. In my case, I eventually discovered that hashis was the cause and, whilst the Drs were, and largely still are, in denial, set about treating myself.

It is disgraceful that 'doctors' leave medical school with such rigid thinking, ie. hot flushes = menopause, with no other possible causes even suggested, let alone investigated. It's even more disgraceful that some of them eventually rock up as endocrinologists with just as little knowledge.

Well done and best wishes to Caroline for bringing her story to the national news. I've learned a little about hyperparathyroidism as a result, and I hope that there are many doctors out there who will also learn from her story and become more accepting that not everything is caused by menopause.

[Sparklingsunshine in reply to Puddleperson]

If you think menopause is bad enough try having Fibromyalgia, I'm not kidding when I say that everything you can think of gets blamed on it. Its such a convenient "get out" . I find it both amusing and absolutely ridiculous and as a result I've lost a lot of respect for doctors because of it. I cant be bothered with them now.

[Puddleperson in reply to Sparklingsunshine]

I agree, I don’t trust them. I think the lesson is, learn as much as you can then question and check everything a doctor says. Sad isn’t it.

[Sparklingsunshine in reply to Puddleperson]

It really is and my concern is that I could present one day with something serious and get the brush off. It happened when I got appendicitis. I was becoming more and more unwell over several days but I'm not the sort to make a fuss and I wasnt rolling around on the floor. I'd already seen a GP who was pretty sure that's what is was.

At A&E a couldnt be less interested junior doctor examined me and concluded it wasnt appendicitis. Fortunately her consultant over ruled her, examined me himself. He was certain it was my appendix and decided to operate. As it was my appendix had turned gangrenous and was on the verge of rupturing and I needed several days of IV antibiotics.

If I'd been sent home by that junior doctor I could have died. Appendicitis isnt that hard to diagnose so God help anyone with something rare or unusual.

[Puddleperson]

That’s scary and it’s not even as if appendicitis is a rare condition! Glad there was a consultant around to step in and that you recovered. xx

[jiankang]

Doctors seem to follow national guidelines. Might the national guidelines be inadequate and one of the problems?