Nice guidelines 😡

[birkie]

Hi everyone ❤️

Although this post is not about my thyroid / parathyroid journey it's about the absolute incompetence of NICE...I'm on a great parathyroid site and our lovely lady on there who set the site up as fought constantly for us paratroopers to have the nice guidelines changed in respect to the calcium level of 2.85 [ range for calcium, 2.10..2.60] in the guidelines our calcium as to reach this 2.85 golden number before any intervention is needed in respect to seeing a specialist.

Now we as paratroopers know this is bull 💩 as its been proven that patients with overactive parathyroid glands don't need to reach this golden number in order to have primary hyperparathyroidism or normocalcemic hyperparathyroidism.

This lovely lady as wrote to nice pointing out this flaw with calcium levels, again she as been ignored , but to say these people who sit upon these boards are incompetent is not surprising, she was also recently trying to bring to there attention the amount of patients who get a diagnosis of the menopause instead of hyperparathyroidism, leaving many patients who actually have a parathyroid problem to suffer because of the miss diagnosis, she pointed out that there paper actually mistook primary hyperparathyroidism as a thyroid issue 🙄 [ my God if these people can't tell the difference between thyroid and parathyroid we're all doomed] this paper as actually been published 😡.

My thyroid issue was also labelled as menopause, as was my parathyroid , first indication of primary hyperparathyroidism was in 2004 with the watch and wait approach, 2014 in my records [ which I was never informed about] suppressed TSH, diagnosis subclinical hyperthyroidism please check this lady's thyroid bloods regularly for TSH, T3, T4 ... this never happened, eventual diagnosis in 2018 after my gp insisted my symptoms were menopausal and CFS lost my thyroid in 2019 , second diagnosis of primary hyperparathyroidism in 2020 with again the watch and wait approach......wait for what???😡

We have to remember our GPs and specialist [ endocrinologists] and I use the term specialist lightly ] use these guidelines in order to control patients, I myself have had these thrown at me like there some kind of get out clause for not treating us😡.

I have no doubt some women on this site of a certain age who presented themselves to there gp with symptoms would have been told.." it's menopausal " this is incompetence at the highest level and again if the NICE board can't tell the difference between thyroid and parathyroid then we have to ask ourselves....who the hell are these people on these boards??

And how much do they get paid to spout this nonsense 😡😡

RANT OVER...😂

[TaraJR]

The new NICE Menopause guideline isn't brilliant either. Quite a few important omissions.

[birkie in reply to TaraJR]

Yes so I believe, it's appalling how these people are allowed to hold positions of power on boards who clearly have no idea about the conditions 😡 beggers belief truly 😔😔

[BiscuitBaby in reply to birkie]

I had that very statement made to me by my gp. He told me that I "was nearly 45 so you might just have to learn to live with it". This was after I told him I was sleeping 13 hours a night and felt like my body was dying. He then told me I was depressed and offered antidepressants! A while later after complaining about on going symptoms a young female gp told me I had functional neurological disorder and referred me to neurology. I had to have an mri and the neurologist agreed that my symptoms were related to my thyroid! It was her consultation that made me seek a private endo appointment. It was evident that I wouldn't improve otherwise. You're either menopausal or just plain mental!!!

[Jazzw]

Rant away. It’s getting pretty close to criminal how little is understood by doctors these days. You’ll get the odd one who’s willing to think for themselves or “outside the box” but they’re becoming vanishingly rare.

Most of the professions seem to be being dumbed down in this way and hold the view that if it isn’t in their guidance, it can’t be true. Not sure where it started or how bad it’s yet to get—but I think it’s something most of us of a certain age have noticed happening over the last 20 years or so.

I assume it has something to do with litigation, i.e., the increasing desire of many to sue when things go wrong. Guidance is their get out of jail free card—if they’re following it, they’re in the clear, even if following it practically left you for dead.

Parathyroid conditions are woefully misunderstood. Like you, I do wonder just how many people have issues who have no idea that they even have parathyroid glands.

[Lesleynotts in reply to Jazzw]

I came to the same conclusion about how GPs in particular adhere to 'guidance', Jazzw, and your summary about it is very apt. It's something to point out to a health professional if adherence to guidance is over dominant.