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Why your doctor may not be listening to you

Leopardtail

Senior Member
Messages
1,151
Location
England
Sorry, Lesions is used medically to mean:
  • the things that causing health to go wrong
So low thryoid is a lesion, high testosterone is a lesion etc. I am not sure what the technical definition, but in literature lesion is used to mean 'the thing to treat' as opposed the symptoms. @MeSci may be able to to give you the 'doctors textbook' definition.
 
Messages
15,786
Sorry, Lesions is used medically to mean:
the things that causing health to go wrong
It's tissue damage, nothing else. So that would include anatomical dysfunctions, but not physiological dysfunctions.

And at any rate, I think it's a good idea to use language which is clear to your audience, rather than terminology used in a specialized manner which contrasts with its common use.
 

Leopardtail

Senior Member
Messages
1,151
Location
England
When I was lost in the fog of lithium-induced hypothyrodism and undertreated (only given T4) I would get up at 3 p.m (yes, I GOT UP at 3 p.m.) and starting searching on the Internet for the remedy since I wasn't responding to T4 alone. I had to beg my doctor to give me T3 and sent links and information to my doctor.

Her "research" led to the conclusion that T4 was just as good as T3 and furthermore, she suggested my time would be better spent resting than trying to find a solution on the Internet. This was from a young female primary care physician. I told her that I would spend the rest of my life on the Internet if I felt that was the only choice.

I fired her and found a much better primary care doctor.
Both of the leading medical bibles on Endocrinology "The Oxford Textbook of diabetes and endocrinology" and "The Williams Textbook of Endocrinology" indicate groups of patients with issues converting T4 to T3 so her "research" did not include well established medicine. One of them even gives a list of possible causes (medicines). This problem is more common in ME patients, but far from ME specific. Obvious causes include Selenium deficiency, Iodine deficiency but there are many.
 

Leopardtail

Senior Member
Messages
1,151
Location
England
It's tissue damage, nothing else. So that would include anatomical dysfunctions, but not physiological dysfunctions.

And at any rate, I think it's a good idea to use language which is clear to your audience, rather than terminology used in a specialized manner which contrasts with its common use.
Not deliberate, been reading/writing a lot of medical correspondence recently as per all with ME my communication skill is impaired. Exitotoxity and thyroid dysfunction are also described as 'lesions' in literature so that seems to be a bit of a blurred boundary re the biochemical (right or wrong). I have never seen anything cognitive/psychological described as such.

I just looked it up..
"A lesion is any abnormality in the tissue of an organism"
That includes both form and function, my ME specialist for example described my inability to convert enough T4 to T3 as 'a thyroid lesion'.
 

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
Both of the leading medical bibles on Endocrinology "The Oxford Textbook of diabetes and endocrinology" and "The Williams Textbook of Endocrinology" indicate groups of patients with issues converting T4 to T3 so her "research" did not include well established medicine. One of them even gives a list of possible causes (medicines). This problem is more common in ME patients, but far from ME specific. Obvious causes include Selenium deficiency, Iodine deficiency but there are many.

Low cortisol, low iron...etc. My adrenals were drained after this and still are, but I'm working on that. I know more about thyroid hormone physiology than I ever wanted to know, and this is on top of having a degree in Medical Technology. This was a clear case of the doctor cherry-picking whatever research was going to let her ignore me.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Sorry, Lesions is used medically to mean:
  • the things that causing health to go wrong
So low thryoid is a lesion, high testosterone is a lesion etc. I am not sure what the technical definition, but in literature lesion is used to mean 'the thing to treat' as opposed the symptoms. @MeSci may be able to to give you the 'doctors textbook' definition.

Nope - I'm a scientist, not a doctor!
 

chipmunk1

Senior Member
Messages
765
Her "research" led to the conclusion that T4 was just as good as T3 and furthermore, she suggested my time would bebetter spent resting than trying to find a solution on the Internet. This was from a young female primary care physician. I told her that I would spend the rest of my life on the Internet if I felt that was the only choice.

that's what i meant when i said they want to control everything and then they complain that they are so overworked.

They believe patients should not know and can not know. Only doctors can research and draw conclusions.

They should encourage such behaviours the more people try to take care of their health the less work they have.

The patient's role in medicine is like the female role in society 100 years ago. They are considered to be second class citizens who can't make decisions on their own. Medicine is still so backwards!
 

RYO

Senior Member
Messages
350
Location
USA
My comments are not to invalidate your experiences. Mainstream medical community's treatment of ME/CFS patients can be atrocious. Laura Hillenbrand's essay "A Sudden Illness" (2003) eloquently describes her frustrating experiences with physicians who had very little knowledge of ME/CFS. Fortunately she was ultimately able to find a specialist at John Hopkins who made the diagnosis.

My intention is to widen the perspective on this ugly problem. Character assassinations of the entire mainstream medical community will only get you so far.

In a perfect world, we would have legitimate medical centers devoted to the care / treatment of ME / CFS patients. GPs would have access to ordering confirmatory tests and treatment protocols depending on pattern of symptoms and symptom severity.

There are many examples of medical mistreatment / neglect when a clear understanding of the disease process was lacking. ie Multiple sclerosis was referred to as "hysterical paralysis".

This brings me to square one. We need further scientific progress/research in unraveling the pathophysiology of ME/CFS. Until then we are mired in conjecture, patient frustration, and feeling like the orphaned child. I gave a copy of "A Sudden Illness" to my own PCP. He had already read the book - Unbroken but wasn't aware of her medical condition. The article helped him understand the frustrations of ME/CFS patients.

When Louis Zamperini died recently, CBS ran a nice story which included the story of Laura Hillenbrand's debilitating illness. I am hoping when the movie Unbroken comes out in December, it will continue to raise awareness for ME/CFS.
 

Leopardtail

Senior Member
Messages
1,151
Location
England
that's what i meant when i said they want to control everything and then they complain that they are so overworked.

They believe patients should not know and can not know. Only doctors can research and draw conclusions.

They should encourage such behaviours the more people try to take care of their health the less work they have.

The patient's role in medicine is like the female role in society 100 years ago. They are considered to be second class citizens who can't make decisions on their own. Medicine is still so backwards!
A former girlfriend was a Nurse for many years and is now a lecturer is Nursing. She described the manner in which Doctors are trained to 'maintain authority' and trust the tests not the symptoms. The problem in her opinion as insider was that doctors are trained to ignore the patient hence the arrogance is not inherent but instilled during training. The expert patient scenario has been investigated in the field of diabetes in the context of primary care. Yes GP's as per all other professions work under pressure, who doesn't? They must however come to terms with the fact that many patients have special expertise in their disease and learn to cultivate relationships based upon mutual respect. They also need to develop skills in ascertaining the expertise of their patients. I am not just speaking of ME here, but long term disease in general.

We live in an age where respect is earned not demanded. My better GP has lower workload per patient because she treats them with respect, hence she has less useless repeat appointments and wastes less time making silly arguments.
 
Last edited:

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
:-D smiles, was aware of that but thought you might know the technical definition, having been formally trained.

I wouldn't say I'd been trained - that is more what happens at medical school. I studied and got degrees and have done some freelance work. ME put paid to my hopes of doing more formal science work.

The best I can do is point you to good definitions found through a simple internet search, e.g. http://medical-dictionary.thefreedictionary.com/lesion
 

Dr.Patient

There is no kinship like the one we share!
Messages
505
Location
USA
A former girlfriend was a Nurse for many years and is now a lecturer is Nursing. She described the manner in which Doctors are trained to 'maintain authority' and trust the tests not the symptoms. The problem in her opinion as insider was that doctors are trained to ignore the patient hence the arrogance is not inherent but instilled during training. The expert patient scenario has been investigated in the field of diabetes in the context of primary care. Yes GP's as per all other professions work under pressure, who doesn't? They must however come to terms with the fact that many patients have special expertise in their disease and learn to cultivate relationships based upon mutual respect. They also need to develop skills in ascertaining the expertise of their patients. I am not just speaking of ME here, but long term disease in general.

We live in an age where respect is earned not demanded. My better GP has lower workload per patient because she treats them with respect, hence she has less useless repeat appointments and wastes less time making silly arguments.

Doctors are trained all the time to treat the patient, not the lab results. This is where the judgment and experience of the doctor come in.
 

Leopardtail

Senior Member
Messages
1,151
Location
England
Doctors are trained all the time to treat the patient, not the lab results. This is where the judgment and experience of the doctor come in.
That should be the case but here at least seldom seems to be so.... Nor is it what my friend described.... more common here is 'you are not hypothyroid dear patient, your results say so.....'
 

Leopardtail

Senior Member
Messages
1,151
Location
England
I wouldn't say I'd been trained - that is more what happens at medical school. I studied and got degrees and have done some freelance work. ME put paid to my hopes of doing more formal science work.

The best I can do is point you to good definitions found through a simple internet search, e.g. http://medical-dictionary.thefreedictionary.com/lesion
by 'trained' I meant your medical science degree :)
I have since found several definitions, but thanks anyway...
The most general was "damage to, or abnormal pathology or function of tissue"
 

Snowdrop

Rebel without a biscuit
Messages
2,933
That should be the case but here at least seldom seems to be so.... Nor is it what my friend described.... more common here is 'you are not hypothyroid dear patient, your results say so.....'

It certainly matches my experience. And I've lived in different countries and cities so had various Dr's. All of them were recommended to me when I got to know people (usually nurses-through my children's school) in a new place. All of the Dr's lovely people, just stuck on what the tests say about my symptoms.