Patient Requests for Tests and Treatments Impact Physician Management of Hypothyroidism

[helvella]

See, I keep telling you, it really is ALL YOUR FAULT!

You are a barrier. Not a concerned patient. Certainly not an informed patient.

Thyroid. 2019 Aug 22. doi: 10.1089/thy.2019.0383. [Epub ahead of print]

Patient Requests for Tests and Treatments Impact Physician Management of Hypothyroidism.

Esfandiari N1, Reyes-Gastelum D2, Hawley ST3, Haymart MR4, Papaleontiou M5.

Author information

1 University of Michigan, 1259, Ann Arbor, Michigan, United States; [e-mail].

2 University of Michigan, 1259, Ann Arbor, Michigan, United States; [e-mail].

3 University of Michigan, 1259, Ann Arbor, Michigan, United States; [e-mail].

4 University of Michigan, 1259, Ann Arbor, Michigan, United States; [e-mail].

5 University of Michigan, 1259, Ann Arbor, Michigan, United States; [e-mail].

Abstract

BACKGROUND:

Levothyroxine is one of the most commonly prescribed medications in the United States. Although prior research focused on over- and undertreatment and patient dissatisfaction with thyroid hormone, little is known about physician reported barriers to managing thyroid hormone therapy. Additionally, the impact of patient requests for tests and treatments on hypothyroidism management remains unexplored.

METHODS:

We randomly surveyed physician members of the Endocrine Society, American Academy of Family Practice and American Geriatrics Society. Respondents were asked to rate barriers to management of thyroid hormone therapy. We conducted multivariable logistic regression analyses to determine correlates with physician report of the most commonly reported barriers, including patient requests.

RESULTS:

Response rate was 63% (359/566). Almost half of physicians reported that patient requests for tests and treatments were somewhat to very likely to be a barrier to appropriate management of thyroid hormone therapy (46%). Endocrinologists [odds ratio (OR), 2.29; 95% confidence interval (CI), 1.03-5.23, compared to primary care physicians] and physicians with more than 25% of patients on thyroid hormone therapy per year (OR, 1.90; 95% CI, 1.05-3.46, compared to those with <25% patients per year) were more likely to report patient requests as a barrier. Physicians with more years in practice were less likely to do so (11-20 years: OR, 0.44; 95% CI, 0.21-0.89; >20 years: OR, 0.24; 95% CI, 0.12-0.46, compared to ≤10 years). Physician reported patient requests included requests for preparations other than synthetic thyroxine (52%), adjusting thyroid hormone dose based on symptoms when biochemically euthyroid (52%), maintaining thyrotropin level (TSH) below normal range (32%) and adjusting dose according to serum T3 level (21%). Physicians who reported receiving patient requests for the former three unconventional practices were more likely to execute them (p<0.001, p=0.014, p<0.001, respectively).

CONCLUSION:

Physicians reported patient requests for tests and treatments as a common barrier to appropriate thyroid hormone management. In some scenarios, physician adherence to patient requests may be a driver for inappropriate care and lead to harm. Understanding physician reported barriers to thyroid hormone management and factors associated with physician perception that patient requests are a barrier is key to improving patient care.

PMID: 31436135

DOI: 10.1089/thy.2019.0383

ncbi.nlm.nih.gov/pubmed/314...

[JGBH]

Of course! How dare we request tests and treatments? Doctors want docile patients who let them do as they please and do not spend any of their surgeries money! What an odd world!

Doctors who don’t really want patients but get a top salary nevertheless...

[vocalEK in reply to JGBH]

Practicing medicine would be great if it weren't for patients.

[JGBH in reply to vocalEK]

Indeed! Especially those patients who do research and question as well as requesting tests, referrals, etc.

[linda96]

Have to say I love the absurdity of it.

The authors did not ask if the Drs agreed with thyroid patients views of their ongoing therapy needs. I wonder how many would have said yes?

With a plethora of ‘important’ thyroid guidelines published to great fanfare, it comes down to F2F with a dr.. who like the rest of us, just wants a quiet life.

Love it.

[Hidden]

Goodness me.

The first question they should have asked is "why do patients ask for this?" because it seems to me that patients who feel well and are satisfied with their treatment do not have any need to ask for different tests/treatments.

This sounds like it is reflective of the results of the survey last year (year before?) that showed that thyroid patients by and large are not very satisfied with their treatments. (The one that showed that 5/10 patients on levo were satisfied and 7/10 on NDT were satisfied. Or something to that effect!)

[Hidden in reply to Hidden]

This is the study ncbi.nlm.nih.gov/m/pubmed/2...

It was a rating of treatment, not proportion of patients.

[SilverAvocado in reply to Hidden]

I believe I've read similarly absurd papers in the past saying that a feature of thyroid patients is that they complain a lot about still being sick.

It seems to be a well accepted fact that we do!

Some papers discuss this in a weirdly detatched way as if it was a symptom like a puffy face that just appears with no meaning.

A few very good papers discuss it as a serious observation by patients that the treatments don't work very well.

[TSH110 in reply to SilverAvocado]

What could be more patently obvious than the complains being genuine, because the treatment is not working properly for various reasons the most obvious being to me that a normal functioning thyroid gland does not just make T4 so why on earth would giving someone with a thyroid disorder just one thyroid prohormone be likely to restore them back to full health? It is as if nature and what it devised can be improved upon by men in white coats. Mother Nature is vastly superior in every way to the ideas of these idiots who think they know it all and have superior knowledge above millions years of evolution - they are deluded fools. Pity they are making millions of people needlessly ill with their stupid ideas

[SilverAvocado in reply to TSH110]

And if they did just believe the patients they'd have quite an interesting research finding:

Research Question: What is the biggest barrier to managing thyroid hormone therapy?

Answer: The fact the damn therapy doesn't work!

[TSH110 in reply to SilverAvocado]

Exactly

[Nanny23 in reply to TSH110]

Couldn’t have said it better. Dr. says bloods are normal but I feel like crap

[Greekchick]

GIVE ME A BREAK!!!!!!!!!🤯 WHO ARE THESE PEOPLE????? It just goes to show that you can take a nonsensical research question, get ridiculous answers that make no sense, and get it published in one of the “leading” journals in the thyroid field. Shameful. Enough said.

[Batty1 in reply to Greekchick]

I wonder how much money they spent on doing this research when they could have just done the test....idiots

[Treepie]

“adjusting the dose based on symptoms” Not having that!

[helvella in reply to Treepie]

“adjusting the dose based on symptoms”

Seems that is deemed:

Physicians who reported receiving patient requests for the former three unconventional practices were more likely to execute them.

Mind, I do worry about execution. Probably safest to keep well away from endocrinologists with that frame of mind.

[Stourie in reply to helvella]

Just what I was thinking. lol Jo xx

[shaws in reply to helvella]

At least I laughed at your comment when it might well be that we actually need the 'others executed'.

[Hidden in reply to shaws]

I laughed with you shaws 😊

I think we are " doomed" ......xx

[DeeD123 in reply to Treepie]

😂😂😂😂😂😂😂😂

[MissGrace]

It makes you want to weep! No analysis of why these patient requests recur. I totally agree with SewinMin!.

‘Physician adherence to patient requests may be a driver for inappropriate care and lead to harm’ - what - like someone getting well?

This is a toxic, patient-blaming, bigoted and ignorant piece of research. It also assumes TSH is god - an ignorant and incorrect assumption. We are all doctor-bothering mental cases who don’t know what is good for us.

What a load of cr*p. It has all the scientific and objective research integrity of a 14yr old’s Biology project. I could have done this - ask some doctors - and guess what - a lot of them think patients are a pain in the neck and should submit immediately to their wisdom. No sh*t Sherlock. What this shows is the arrogance of some members of the medical profession and the issue of mass medicine losing sight of the individual.

🤸🏿‍♀️🥛

[vocalEK in reply to MissGrace]

Time for you to write a letter to the Editor of the Journal. Maybe many of us should do so.

[helvella in reply to vocalEK]

I encourage everyone to make their opinions known. Well worth putting effort into writing as well as we can.

[MissGrace in reply to vocalEK]

Gauntlet thrown down, challenge accepted. I will do exactly that! 🤸🏿‍♀️🥛

[shaws]

Why don't we give all of these doctors a 'trial without a thyroid gland' for a period of six months. It's the only way to knock some sense into them as we are not cars who are taken to the garage for a service. By the way most of the cars may be very old but running perfectly just because they've got everything in the engine at optimal - not us hypo who're on a 'hit and miss' method due to the regulations and withdrawing NDT and T3.

Let's face it, the majority on this forum know more than the majority of doctors or endocrinologists. We are dealing with the failure of the human body (not our own fault through eating/drinking the wrong stuff).

Many members - in this modern era - have had a long and painful journey to get diagnosed - used to be done by temperature and symptoms - doctor held your hand and felt the cool temp and knew symptoms and patient was given a trial of NDT (no blood tests back then).

Considering that NDT was prescribed with no blood tests, and gradually increased and patient recovered their health. If they could do that in 1892 - why in God's name cannot they use the brains they were given instead of restricting us to levothyroxine (T4) alone whilst ignoring disabling symptoms.

[m7-cola in reply to shaws]

‘Why can’t doctors use the brains they were born with...?’ My hunch is that the brains of modern doctors narrow and become inflexible after training. Learning stops. Very few seem to listen open-mindedly to their patients. The fear of being sacked is also a deterrent to their thinking as is that of being ostracised by other professionals.

[SilverAvocado in reply to m7-cola]

I'm sure I've read a study about this process, too. Showing that when the young medical students enter training their common sense and empathy are working just fine, but somewhere towards the last year most of it disappears.

Or maybe I was listening to a podcast.

[TSH110 in reply to m7-cola]

Most of them are probably from affluent backgrounds getting superior educational advantages without necessarily having much intellect, allowing them to enter a career that automatically affords a high salary, status and a veneer of professionalism. A calling for all the wrong reasons if you ask me. Perhaps it is a miracle that there are some good ones out there! Call me a cynic but it would explain why thyroid patients are seen as a problem interfering with “box ticking” and targets, not human beings who still feel unwell due to the inadequate treatment given by modern medicine, and a clear indication that new approaches (or even old ones!) are needed to restore us to better health. We can’t all be whinging hypochondriacs with mental disorders where previously the symptoms were believed to be from hypothyroidism when their precious TSH readings were over 0.5 or 1 or 2.5 or 5 or 10 or whatever is their latest flavour of the month number to determine if hypothyrodism persists or a euthyroid state has been achieved. All divorced from how the patient actually feels - it is not us but medicine that has gone mad. Only a bunch of sheep would swallow all that clap trap about difficult thyroid patients and us being barriers like we are old beaten up pallets blocking their doorways and routes to health.

You are probably right that they are brainwashed during training and anyone who steps out of line is punished and even struck off.

[SilverAvocado in reply to TSH110]

In my life I've been friendly with a few interesting, wise, switched on people who started medical training.... But eventually got pushed out before they completed because they didn't dress right, asked the wrong questions, didn't have the right family support, etc.

Dress right is the most shocking, really, altho it may just have been the final straw.

[TSH110 in reply to SilverAvocado]

Yes I knew a real maverick medical student - his grandma was one of the first women to qualify as a doctor if not the first from Sheffield so he did come from the right kind of background. He was disgusted by the big pharmaceutical companies’ bribery of doctors with obscene “gifts” and would not have anything to do with it. He was a brilliant thinker but I understand he could not climb the greasy pole because of his stance. I understand that his potential was not realised as a result of sticking to his principles. If he did stay in medicine I bet he is still brilliant at what he does. He was not easily intimidated. Endocrinology could do with someone like that.

It is such a shame your friends were chased out for daft things like having and enquiring mind, dress and background. They sound like admirable qualities to me!

[Hidden in reply to shaws]

No hand holding shaws.....blood pressure will go up ...... More pills...

.........Not a good idea.😂

[shaws in reply to Hidden]

Maybe, Marz, we'd feel better with the occasional increase in blood pressure

[TSH110 in reply to shaws]

It would put them out of a job - dosing by symptoms with NDT is so ridiculously simple it could be done without need of even seeing a doctor. The NHS could save a fortune and get rid of some of these incompetent free loaders by returning to NDT as the primary treatment for hypothyroidism with a list of instructions. I doubt they would ever see most of us again in their surgeries the majority would soon feel well again.

[Fruitandnutcase]

Heavens above - we patients are SO annoying, we keep wanting to get better.

I love the comment just before the conclusion about ‘being more likely to execute’ them, I know it means execute the requests, not the patients but it did make me smile.

[caledoniancat]

"In some scenarios, physician adherence to patient requests may be a driver for inappropriate care and lead to harm. ". They didn't investigate this, so a baseless assumption. They also make no comment about their finding, that physicians with more years of experience were less likely to see patient requests as a barrier. So I will make a broad assumption, it may be that with years of experience, the physicians have discovered their patients are often correct or the physicians have learned over time from reading and experience what is actually needed so patients are less likely to make requests.

Is anyone going to send a critique letter to the editor?

[shaws in reply to caledoniancat]

I will add in lynmynott in case it hasn't been brought to her notice.

[Astridnova]

Thanks for that! They are so insightless and unscientific. For all their statistics, they cannot draw a rational conclusion; only imagine that they have found corroboration Big Pharma's regime. How did we get to this situation where the medical fraternity are more like some kind of dogmatic cult?

[Aurealis]

What happened to the doctor patient partnership focus in management of long term conditions? I think they started with the wrong research question.

[Fruitandnutcase in reply to Aurealis]

That depends on whether or not you actually see the same doctor every visit. I saw a different endo for every appointment during my year of treatment and at my local surgery - well I can barely get an appointment let alone see the same person at the moment in spite of the receptionist phoning to tell me to make an appointment then phoning to make an appointment I still couldn’t get one.

I would have expected that as I got a message from them telling me I had to see a particular doctor I would have been able to book a definite time - not go through the ring between 8.30&9.00 rigmarole. No online diary times in for the middle of September when I’ll be back from holiday - not an appointment with my designated doctor in the last month.

This giving elderly patients a designated doctor obviously isn’t working - I can’t get to see my designated and part time doctor but I can’t be seen by any of the other doctors. Definitely a touch of Catch 22.

So doctor / patient partnership lmao😂😂😂😂😂

[Batty1]

Only barrier I see are the barriers put up by lousy Endos and GPs.

[TSH110 in reply to Batty1]

So succinctly put - bravo!

[vocalEK in reply to Batty1]

And treatment guidelines!

[diogenes Remembering]

I read this as follows:

We have been treating patients for 35 years with T4 based on normalising the TSH. It is he ideal way to proceed. No, we haven't read any literature questioning this and nor are we going to. And then, perhaps some patients have read and understood this literature but that's their problem: they shouldn't listen to people who don't follow the rules. And yes, normalising the TSH by T4 only is the only way to diagnose. The patient in front of me is an anonymous cypher and therefore the fact that they are complaining and trying to get me to do something different can be safely ignored. Otherwise I have to think, rather than turn the convenient handles And thinking puts a barrier between me and the patient, because I'm not good at it. If only they would leave me in peace!

[greygoose in reply to diogenes]

Oh, that is exactly it!

[SilverAvocado in reply to diogenes]

I think you should get that printed on a T-shirt!

[Greekchick in reply to diogenes]

Thank you, diogenes!

[shaws in reply to diogenes]

I agree with you diogenes. Especially when my doctor phoned to tell me TSH was too low, FT4 too low and FT3 'too high'. He wanted me to reduce my dose. When I disagreed he then went on to say that T3 converts to T4 and I said 'No doctor - T4 converts to T3'.I said 'I have those results because I don't take T4 and take T3 only.

[Hidden in reply to shaws]

What was the response to that?

[shaws in reply to Hidden]

The response was 'silence'.

[Hidden in reply to shaws]

Let's hope he just misspoke!

[shaws in reply to Hidden]

No, he was absolutely positive he was right and I was wrong.

[Hidden in reply to shaws]

Oops

[shaws in reply to Hidden]

He wanted me to reduce my dose and I refused. He cannot do anything about it as I buy my own.

[Hidden in reply to shaws]

Was it in range?

[shaws in reply to Hidden]

T4 showed 'low in range' as I take none. T3 was top of range (if I remember correctly). They only take notice, mainly of the TSH, and that was low too when GP seems to think 'somewhere in range' is o.k. I'm sure he believes a very low TSH means I've gone hypERthyroid and I had been taking too much hormones.

[TSH110 in reply to shaws]

I told the last doctor who suggested this, that I knew exactly what it was like to go hyperthyroid as I suffered it many times when I was not diagnosed but was very ill with hypothyroidism and I could assure her I was definitely not getting any such symptoms and in fact I felt completely normal. I look the picture of health too. She was only a young doc about to get her wings and she did listen. I explained the TSH was low because I took T3 in NDT so there was no need for the pituitary to signal more was needed as I already had the right amount of thyroid hormones in my blood - I also told her I had the DIO2 gene combination that reduced my ability to convert T4 to T3 which was why I felt much better on NDT. She was quite curious to know what NDT and grains were - and what T4 was in 2 of them, I said about 150mcg (wrong!). She said it sounded like I knew a lot more about the thyroid than she did! At least she listened and appeared to take note, perhaps new doctors like that are the hope for future improvements in thyroid care and treatment. I have heard nothing more about it. I gave her excellent feed back on the

assessment form - she genuinely impressed me.

[Fruitandnutcase in reply to shaws]

Think we should get some tee shirts printed up with

I DON’T TO BE SOMEWHERE IN THE RANGE

I WANT TO BE

OPTIMAL

Maybe then the message might get through.

[TSH110 in reply to shaws]

🤣😂🤣

[TSH110 in reply to shaws]

🙄

[TSH110 in reply to shaws]

Well I call that a result! Well done 😎

[Nanny23 in reply to shaws]

My doctor argued with me on same thing that T4 was more important. I convinced him T3 was the active hormone but it was an argument I won thanks to your help

[SilverAvocado]

Heehee, are we in a Monty Pyhthon sketch?

[shaws in reply to SilverAvocado]

Sometimes I do wonder?

[helvella in reply to SilverAvocado]

May I suggest:

Miss Ann Elk and her new Theory on Brontosauruses

youtube.com/watch?v=hKc_1gc...(Not working as expected?)

[Hidden in reply to helvella]

Love the 1+1=3 on the board.

[TSH110 in reply to helvella]

I think her theory might explain my beard hair too!

[TSH110]

So knowledge is not power! Small wonder thyroid patients get such a raw deal with dinosaur attitudes like these from medical practitioners. When will these entrenched and harmful attitudes ever be exploded? I suppose revealing them is a step in the right direction although not the intention of the authors. I am proud to be a “barrier”

[vocalEK]

"Physicians who reported receiving patient requests for the former three unconventional practices were more likely to execute them (p<0.001, p=0.014, p<0.001, respectively)." I thought murder was against the law!

[lady_eve]

The toxicity of this beggars belief.

[shaws]

Of course, helvella, it is all our own fault that levothyroxine makes us unwell or very unwell and we're told 'you're in range' so we will have 'other prescriptions' to try to fix the disabling 'symptoms' when it is due to insufficient T3 being converted from T4. In other words - the statement from the Professionals - means that they know more than we, the patient, but they've no clue how disabling symptoms are when not on a sufficient dose or a product that makes us feel worse. We are relying on the 'professionals' some of who insist in keeping the TSH 'in range' even top of range whilst they have no clue at all of symptoms which they are supposed to be relieving..

[helvella in reply to shaws]

The majority of medical professionals would probably be staggered to read the symptoms and issues which have been proved to be related to thyroid hormone levels - at least to the point of having serious, properly conducted research done.

They seem always to rely on the very short list of particularly obvious symptoms - even when some have the potential to seriously mislead. Obviously examples, gaining weight when hypothyroid, losing when hyperthyroid. Not conforming to those classics seems to be enough to dismiss the possibilities.

[shaws in reply to helvella]

Would a survey of members who are taking 'other than' thyroid hormones to try to control their clinical symptoms be a good idea? If members do get 'other prescriptions' the cost rises and patient still doesn't recover and most are thought of as having a 'fixation on hypothyroidism' but due to their TSH result being 'within range' they get additional prescription which may not alleviate symptoms at all.

[Aurealis in reply to helvella]

It makes me so cross that they ignore our views so much. I recently requested a test electronically as I thought my T3 levels were heading a bit high despite stable dose. The test was refused because ‘you had one three months ago’. That particular test was prompted by my endo following a dose increase, it’s not rocket science, it just took longer than expected for levels to rise.

So then I made an appointment (not an easy thing to achieve) about all my symptoms, and we discussed my visible symptoms culminating with GPs suggestion that I have a blood test to check my T3 Level. Overall the process from my original request was almost four weeks. T3 was a bit too high. I’m just saddened that my health is such a low priority to a GP and if high T3 is such a concern to them why don’t they act like it is.

[shaws in reply to Aurealis]

Did you leave a 12 hour gap between last dose of lio and test? If not results may have been skewed.

[Aurealis in reply to shaws]

Thanks shaws. I’m very sensitive to levels - the test confirmed what I expected and I feel better on lower dose, so a reduction in T3 was the right thing. I know I should but no, I didn’t leave a full 12 hours from previous dose, but about 10.25 hours - more than I did at time of previous test. I also did Medichecks with 11.5 gap and T3 was higher still. I’m taking T3 in 3 doses so it’s difficult to maintain schedule and leave 12 hours before test. I’m trying to gradually get round to a standard gap that gives me T3 in range too.

[shaws in reply to Aurealis]

I've always taken T3 once daily. The reasoning by Dr John Lowe - an expert on T3 was that T3 receptor cells have to be 'flooded' and once in the receptor cells, the effect lasts between one to three days.

[Aurealis in reply to shaws]

Yes I agree the cells have to be flooded. I’m just too sensitive to T3 to take my whole daily amount in one go. But I need a good size dose first thing. Paul Robinson uses the analogy of waves lashing the shore, one needing to be big enough to breach sea wall which is the same argument I think. Fascinating isn’t it.

[shaws in reply to Aurealis]

I need 25mcg daily. It has resolved all symptoms.