Where do I start? There's just so much wrong... - Thyroid UK

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Where do I start? There's just so much wrong...

vocalEK profile image
15 Replies

medpagetoday.com/endocrinol...

"Small Lab Changes Equal Big Thyroid Prescribing Uptick

— Researchers call for collaboration between lab biochemists and clinicians"

The writers lament the fact that after the upper limit for TSH was lowered from 6 to 4, more patients were diagnosed with hypothyroidism and more patients were given increases in their medication.

Wow, costs went up! What a tragedy! (<-sarcasm Pay no attention to the patient suffering before you.)

"Symonds and Kline further explained that it's common for providers to treat only mild TSH elevations with pharmacotherapy despite lack of evidence that treatment with levothyroxine in all cases improves clinical outcomes.

Instead, they suggested that patients with mild subclinical hypothyroidism -- TSH elevations less than 10 mIU/L and normal free T4 -- can actually be safely monitored without empiric treatment, and TSH may spontaneously normalize in many of these patients.

They also suggested that there should be "broad communication and discussions between laboratory physicians and clinicians" before making major changes in reference ranges going forward."

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vocalEK profile image
vocalEK
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15 Replies
SilverAvocado profile image
SilverAvocado

This is one of my big bugbears that appears as an assumption in lots of papers - the idea that if more people are treated and diagnosed that is automatically some kind of error. As you mention, rarely is the suffering of patients ever mentioned, its only the idea there shouldn't be high numbers of treated individuals.

Ages ago I happened to hear a documentary about spectacle wearing. Apparently in the western world well over 50% of people wear some kind of corrective lenses! Far higher than the percentage of the population who get thyoid treatment. I've never come across the idea about glasses that people can't be suffering because the percentage of people in the population who have this complaint is too high!

Imagine the things doctors would say! "Have you ever thought that maybe you just don't want to see things that are far away?"

"Struggling to read must be all in your head because I don't see anything that isn't normal for people your age in your eyes".

Hillwoman profile image
Hillwoman in reply toSilverAvocado

Excellent analogy. Hoping I can remember it the next time some medic makes a similar remark in consultation. I always think of these things later, after the shock has worn off.

shaws profile image
shawsAdministrator

I believe that, in the UK, the instruction is that no-one is to be diagnosed untll the TSH reaches 10.

Before blood tests were introduced we were diagnosed upon our clinical symptoms alone and given a trial of NDT (natural dessicated thyroid hormones).

In diagnosing the patient in these modern times, it is a pity they've removed the knowledge of diagnosing by clinical symptoms and offering NDT (contains all of the thyroid hormones) whilst now prescribing levothyroxine (T4 alone).

The 'experts' who've made the above assumptions obviously have little personal knowledge of how symptomatic many people are before or after being diagnosed and are completely ignorant of clinical symptoms and take more notice of the TSH (which is from the pituitary gland).

Previously symptoms were the way we used to be diagnosed and given a trial of NDT. Natural Dessicated Thyroid Hormones is the original thyroid hormone replacement and dose increased gradually until symptoms resolved.

No need for blood tests back then until Big Pharma wanted a share of the profits, i.e. levo instead of NDT plus, of course, blood tests replacing skill of doctors.

shaws profile image
shawsAdministrator

I had to diagnose myself! The fact - by that time - my TSH had risen to 100 despite GP phoning me a few days earlier to tell me all my results were fine (he missed a TSH of 97.5). It is very fortunate for me that I had requested my own blood test or God knows what would have happened. Thanks to Thyroiduk.org

I am afraid I don't have any confidence in doctors. My Mother died through her GP telling her that she no longer needed B12 injections for her Pernicious Anaemia - result is she died of stomach cancer,

diogenes profile image
diogenesRemembering

This article demonstrates the essential error that such reports make. It is, put simply: a large patient panel may not appear to improve statistically, so we shall assume no individual within the group can improve. This is what continually happens and the medical researchers simply cannot understand. A patient is within the statistics, but that does not mean the statistics define the patient's needs.

vocalEK profile image
vocalEK in reply todiogenes

I want to thank you for being ready, willing, and able to dialog with patients. I'm sending you a big e-hug. Completely free of bacteria and viruses. Especially since I am at a distance of thousands of miles, rather than the 6 feet recommended by the CDC.

shaws profile image
shawsAdministrator in reply todiogenes

You are so correct diogenes and I also just do not understand why the main Organisation which lay down the dictacts for treating the dysfunctional thyroid gland seem not to understand why patients still are very symptomatic and complaining. They seem to be so ignorant of how the body works.

First by withdrawing T3 from being prescribed (we are aware its due to cost but could be sourced elsewhere ) without any warning at all. Then NDTs (through misinformation) and denying people the right to a healthy life if given the appropriate replacements that suit their bodies. This is despite NDT being the lifesaver it was since 1892 - so it has been proven many times over of its safety.

The patient is given extra prescriptions (not hormones) to try to resolve symptoms but which don't improve their health at all. Some remain housebound.

I am puzled that professionals who decide to follow a certain dysfunction of the human body can ignore completely that some patients will not 'fit' into a box that dictates a certain guideline alone is supposed to resolve all clinical symptons but don't .

Unfortunately the patient will be given another prescription(s) which is supposed to resolve remaining symptoms.

It would be interesting to know the cost of all of the 'extra prescriptions' to hypo patients that don't improve their thyroid health and puts an immense strain on family life too plus maybe losing their livelihoods altogether.

I am appreciative of all the work you and your colleagues do but seem not to be read by those who seem to "dance to a different tune' altogether'.

p.s. Dr Lowe suggested that it was due to 'monetary rewards' in the USA that levo eventually overtook NDT.

helvella profile image
helvellaAdministrator

They also suggested that there should be "broad communication and discussions between laboratory physicians and clinicians" before making major changes in reference ranges going forward."

Use of the term reference ranges is already getting off on a bad foot. Whilst I (and many others) have used that phrase, it was because it is marginally better than normal ranges.

However, I have now reformed and henceforth will type Reference Interval!

The normal range: it is not normal and it is not a range

Abstract

The NHS ’Choose Wisely’ campaign places greater emphasis on the clinician-patient dialogue. Patients are often in receipt of their laboratory data and want to know whether they are normal. But what is meant by normal? Comparator data, to a measured value, are colloquially known as the ’normal range’. It is often assumed that a result outside this limit signals disease and a result within health. However, this range is correctly termed the ’reference interval’. The clinical risk from a measured value is continuous, not binary. The reference interval provides a point of reference against which to interpret an individual’s results—rather than defining normality itself. This article discusses the theory of normality—and describes that it is relative and situational. The concept of normality being not an absolute state influenced the development of the reference interval. We conclude with suggestions to optimise the use and interpretation of the reference interval, thereby facilitating greater patient understanding

►Health is a relative and not an absolute state.

►The reference interval acts as a comparator for the patient’s blood result. It is not the arbiter of whether disease is present or not.

►Natural fluctuations in a blood result can occur.

►Comparison of a result against the reference interval should be informed by the clinical suspicion made beforehand.

pmj.bmj.com/content/postgra...

vocalEK profile image
vocalEK in reply tohelvella

I should think that laboratory physicians would be least likely to have any appreciation of how symptoms play into the picture. The laboratory is their world, therefore data is king. If anything, collaborating with lab folks would be more likely to solidify the false idea that lab tests tell the doctor everything s/he needs to know in order to provide effective treatment.

helvella profile image
helvellaAdministrator in reply tovocalEK

Although not a laboratory physician, our diogenes is a laboratory scientist and has much deeper understanding than most other people - doctors in particular.

Lab people might see patterns to which clinicians are blind.

Hillwoman profile image
Hillwoman

I notice the suggestion of "broad communicaton and discussions" does not include the patients themselves.

vocalEK profile image
vocalEK in reply toHillwoman

Yes. Often the patient is not considered to be a stakeholder. But if ANYONE has something crucial at stake, isn't it the patient?

Hillwoman profile image
Hillwoman in reply tovocalEK

Yes, it's almost as if the patients are merely incidental to medical and scientific careers, isn't it? ;-)

serenfach profile image
serenfach

They talk of "working in partnership" with the patient, but it is much more like a dictatorship. In other countries the top range is 4, so are they wrong?

vocalEK profile image
vocalEK in reply toserenfach

Absolutely. They are dead wrong.

If you read through several posts in this forum, you will see that people with TSH as low as 3 often have serious signs and symptoms. This post will show you that when they tested health people with no signs/symptoms of thyroid problems, the range was much smaller than the ranges being used for diagnosis. Nobody, but nobody was anywhere NEAR 10 on TSH. healthunlocked.com/thyroidu...

The ranges being used for diagnosis across the world consist of the results from people who went to their doctors complaining of signs/symptoms you will find on this list: thyroiduk.org/signs-symptom... or on this list: thyroiduk.org/signs-symptom...

By the time someone's TSH is up to 10, their symptoms are debilitating. They are suffering tremendously.

To me, it makes no sense to be applying a range that was normed on sick people. Nowhere is there any system set in place for the doctor to indicate to the lab whether the patient sent for testing is sick or well, and if sick, in which direction -- over or under. So the lab uses math to determine the "normal" range, by throwing out the top 3% and the bottom 3% of the findings and declaring the 94% in the middle to be "normal."

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