Medically not yet explained symptoms in hypothyroidism, 2024, Hegedüs et al.

[SNT Gatchaman]

Medically not yet explained symptoms in hypothyroidism
Hegedüs, Laszlo; Van Der Feltz-Cornelis, Christina M.; Papini, Enrico; Nagy, Endre V.; Weetman, Anthony P.; Perros, Petros

Persistent symptoms are common in the general population and even more so in people with hypothyroidism. When symptoms are unexplained and brought to medical attention, they can be referred to as medically not yet explained symptoms (MNYES), a term preferred to other descriptors by patients, care-givers and experts. MNYES might be neglected by endocrinologists or misattributed to hypothyroidism. Awareness of MNYES could open up more effective and less harmful interventions for patients who present to endocrinologists with unexplained symptoms than costly overinvestigations and over-treatment with thyroid hormones (such as levothyroxine and liothyronine).

The role of the endocrinologist is to recognize and acknowledge that MNYES could be underlying a patient’s presentation, to communicate effectively with the patient and others involved in the patient’s care, to apply a ‘two-track approach’ in management by paying equal attention to physical and psychosocial contributors, and to collaborate with other relevant health professionals. Categorization of patients into levels of risk for symptom deterioration helps in selecting suitable therapies. Effective management of MNYES demands time, training, expertise and resources.

Link | PDF (Nature Reviews Endocrinology)

 

[SNT Gatchaman]

In this Perspective, we focus on a neglected cause of persistent physical symptoms in people treated for hypothyroidism, which we refer to as ‘medically not yet explained symptoms’ (MNYES). The term MNYES is meant to indicate that although some insights might exist, our understanding of the symptoms is still incomplete but involves biological, psychological and social factors.

MNYES are also known as medically unexplained symptoms (symptoms for which adequate examination does not reveal sufficiently explanatory structural or other specified pathology), persistent physical symptoms (somatic symptoms that have lasted for at least 6 months and have caused notable suffering to the patient), functional symptoms or somatization (the tendency to experience and communicate somatic distress in response to psychosocial stress and to seek medical help for it).

MNYES is a term that was coined, from the perspective of patients, care-givers and clinicians, in a priority setting partnership following the James Lind Alliance approach, which laid down priorities for research in this domain in 2022 (ref. 17). The prevalence of MNYES with and without a somatic comorbidity in the general population is 5.9%. In primary care, prevalence ranges from 1.5% to 11% depending on whether or not the defining criteria (described below) are restrictive.

 

[SNT Gatchaman]

MNYES can develop in the context of known medical conditions or in the absence of comorbidities. These are symptoms that can occur widely and be transient in people experiencing stress. Of note, MNYES per se are not a mental condition; however, they can be associated with depressive and anxiety disorders. In some individuals, MNYES can be associated with high levels of distress and disability, sufficient to cross the diagnostic threshold for mental disorder.

The distress related to somatic symptoms, which lies at the core of MNYES, is classified as somatic symptom disorder (SSD) in the Diagnostic and Statistical Manual of Mental Disorders Fifth Edition (DSM-5) corresponding to bodily distress disorders, and Code 6C20 in the International Classification of Diseases 11th Revision, and is defined in the DSM-5 as: “excessive thoughts, feelings, or behaviours related to the somatic symptoms or associated health concerns as manifested by at least one of the following: (1) disproportionate and persistent thoughts about the seriousness of one’s symptoms; (2) persistently high level of anxiety about health or symptoms; (3) excessive time and energy devoted to these symptoms or health concerns”.

MNYES account for up to 30% of consultations in various medical specialties. The most frequent symptoms are fatigue, pain and dizziness. Typically, patients fear that they might have an underlying undetected illness and this fear drives them to seek a diagnosis. They often feel they are not taken seriously, although care might have been taken to explain their condition in depth. People with MNYES do not ‘make up’ their symptoms, nor do they deliberately attempt to deceive health professionals. Current understanding of the aetiology of MNYES suggests that a complex interaction of physical, psychological and social factors are at play, leading to an exaggerated perception of unpleasant symptoms.

 

[SNT Gatchaman]

The majority of endocrinologists are not trained in managing patients with MNYES, and therefore the central role of the PCP should be maintained while patients are followed up. Some clinician behaviours and attitudes are unhelpful and can exacerbate the difficulties that patients with MNYES face, and should be avoided; such behaviours are commonly displayed by endocrinologists. They include not listening to patients, being dismissive, disbelieving or uninterested, lacking compassion, being unable to provide coherent explanations for symptoms and saying or implying that the patient’s symptoms are ‘all in the mind’.

 

[SNT Gatchaman]

Ref 17 as quoted in post 2 is Identifying the top research priorities in medically not yet explained symptoms MNYES: a James Lind Alliance priority setting partnership (2022, BMJ Open)

 

[Jonathan Edwards]

Or the symptoms might be due to antibodies binding to thyroxine associated proteins throughout the body, since hypothyroidism's usually an autoimmune disease.

 

[Turtle]

Or the patient has ME/CFS (fatigue, pain and dizziness) and the endocrinologist dismisses that as a posssible comorbidity.
I've experienced @SNT Gatchaman 's post # 4 too many times. Plenty of iatrogenic scars because of it.

 

[Andy]

Previous output from Van Der Feltz-Cornelis as either lead or co-author.

Prevalence, risk factors and characterisation of individuals with long COVID […] in over 1.5 million COVID cases in England, 2024, Wang+
Prevalence of mental health conditions and brain fog in people with long COVID, 2024, van der Feltz-Cornelis et al
Diagnostic accuracy of the Dutch version of the Somatic Symptom Disorder – B Criteria Scale (SSD-12) compared to... 2023 van der Feltz-Cornelis et al
Learning from long COVID: integrated care for multiple long-term conditions 2023 van der Feltz-Cornelis et al
Neurological Dysfunction in Long COVID Should Not Be Labelled as Functional Neurological Disorder 2023 Van der Feltz-Cornelis, Moriaty and Strain
The clinical management of functional neurological disorder: A scoping review of the literature 2022 Sweetman, van der Feltz-Cornelis et al
IL-6 and hsCRP in Somatic Symptom Disorders and related disorders, 2021, van der Feltz-Cornelis et al
Assessment of cytokines, microRNA and patient related outcome measures in conversion disorder/[FND], 2021, van der Feltz-Cornelis et al
Misdiagnosis of an underlying medical condition as Conversion Disorder/Functional Neurological Disorder (CD/FND), 2020, van der Feltz-Cornelis et al
A European Research Agenda for Somatic Symptom Disorders, Bodily Distress Disorders, and Functional Disorders, 2018, van der Feltz-Cornelis et al

 

[Mij]

It took 10 years for my sister to get a diagnosis of Hashimoto. She had symptoms for so many years.

 

[EndME]

Or the symptoms might be due to antibodies binding to thyroxine associated proteins throughout the body, since hypothyroidism's usually an autoimmune disease.

But from what I've seen unless you develop something like eye disease, such a phenomenon does not seem to exist in the eyes of endocrinologists. As long as you're thyroid hormone levels are stable you are considered "healthy".

 

[rvallee]

he term MNYES is meant to indicate that although some insights might exist, our understanding of the symptoms is still incomplete but involves biological, psychological and social factors.

That's one interpretation. The symptoms are not yet understood by medicine, which is a fact. It's not a name, it's a descriptive sentence. Plugging in the tropey superfluous biopsychosocial nonsense is a choice that removes all meaning and value from it. It serves absolutely no purpose other than pushing a failed ideology. They just can't unhook from the original mistake. It makes everything worse but they never think about that.

Current understanding of the aetiology of MNYES suggests that a complex interaction of physical, psychological and social factors are at play, leading to an exaggerated perception of unpleasant symptoms.

"Current understanding" does not suggest anything. In fact there is zero basis to this idea. People suggest this idea. Have been suggesting this idea for over a century. Always based on logical fallacies. Always without any evidence. Removing agency from people making conscious decisions is always a sign of failure. It means they don't stand behind their own claims, would rather flap arms around pointing at no particular thing as if it means there is support for those beliefs outside of their own mind. This is both wanting to be in total control and waving any responsibility from it. It's incompatible with being professionals.

So now having misused the term medically unexplained symptoms, they want to relabel the same nonsensical concept using a perfectly normal sentence that basically means the opposite, that those symptoms can be explained medically, they just haven't yet. A descriptive sentence that recognizes that medicine is comically far from knowing everything, despite having made explicit assertions to the contrary for over a century. It's like creating a special category of judicial sentencing that is not called guilty, nor innocent, it's called "not guilty", but results in all the same consequences as a guilty verdict, with some pretense otherwise. Lies. Misusing language like this is unethical and should not be allowed in any professional context. But in health care, it's standard. What an ugly mess.

 

[bobbler]

Or the symptoms might be due to antibodies binding to thyroxine associated proteins throughout the body, since hypothyroidism's usually an autoimmune disease.

I was thinking this is a bit sinister in its inference

because understanding the common other symptoms is likely important in moving care forward so these patterns are well understood as they might be common other symptoms (just not addressed well by current medication regimes) or side effects or clues to other things people might develop from either over time so an important part of the biomedical picture

ti try and head this off with a pre-bunk to capture this territory as ‘mind’ seems almost negligent to me

 

[bobbler]

That's one interpretation. The symptoms are not yet understood by medicine, which is a fact. It's not a name, it's a descriptive sentence. Plugging in the tropey superfluous biopsychosocial nonsense is a choice that removes all meaning and value from it. It serves absolutely no purpose other than pushing a failed ideology. They just can't unhook from the original mistake. It makes everything worse but they never think about that.

"Current understanding" does not suggest anything. In fact there is zero basis to this idea. People suggest this idea. Have been suggesting this idea for over a century. Always based on logical fallacies. Always without any evidence. Removing agency from people making conscious decisions is always a sign of failure. It means they don't stand behind their own claims, would rather flap arms around pointing at no particular thing as if it means there is support for those beliefs outside of their own mind. This is both wanting to be in total control and waving any responsibility from it. It's incompatible with being professionals.

So now having misused the term medically unexplained symptoms, they want to relabel the same nonsensical concept using a perfectly normal sentence that basically means the opposite, that those symptoms can be explained medically, they just haven't yet. A descriptive sentence that recognizes that medicine is comically far from knowing everything, despite having made explicit assertions to the contrary for over a century. It's like creating a special category of judicial sentencing that is not called guilty, nor innocent, it's called "not guilty", but results in all the same consequences as a guilty verdict, with some pretense otherwise. Lies. Misusing language like this is unethical and should not be allowed in any professional context. But in health care, it's standard. What an ugly mess.

Yes surely without even a scrap of evidence for so many decades of what appears to be freely turning on the tap for anything funding in this area just a load of claims that normally don’t even have its own results section backing it up despite methodology and design so poor it’s pure bias … well then it should be called what it is and that is pure bigotry by this point

they’ve no evidence someone who went through hell or is female or face fits is more likely than anyone else to have a ‘cause’ that means you scrap heap em before you’ve checked it’s not something worth looking into issue

yet they are pushing for it with propaganda and suggesting using the term ‘mind’ merely fir the power it provides re the mental health act even though it should not at all - they have neither proof someone has any mind issues nor that their physical issues have anything to do with anything but disease or biomedical . So it’s disgusting and an appalling stealing of a weapon unde false pretences - a very serious one at that which subverts human rights access to medical care and sometimes freedom and other rights.

this ‘freedom’ ti write this crap irresponsibly without acknowledging the seriousness of unevidenced assertions linked to such serious potential repercussions I find shocking. That it’s left as something people are allowed to do and keep their title that gives them power and someone’s ear with those who by doing this sort of thing demonstrate how lightly they take responsibility for the potential consequences of such assertions I find a major flaw in the whole system. You can’t have it both ways and take these things lightly re seriousness of your methods before you suggest things whilst helping yourself to the powers of it without the responsibility

 

[Jonathan Edwards]

But from what I've seen unless you develop something like eye disease, such a phenomenon does not seem to exist in the eyes of endocrinologists. As long as you're thyroid hormone levels are stable you are considered "healthy".

Yes, but endocrinologists don't know any immunology. Nor do they tend to remember the widespread connective tissue changes of hypothyroidism that are unlikely to be reversible just by correcting hormone levels - carpal tunnel narrowing, pretibial myxoedema, thyroid acropachy, and so on. These are predominantly associated with Graves disease but there is a strange overlap between Hashimoto and Graves - one can become the other and the autoantibodies are complex.