New thoughts second part

[diogenes]

Experiences with the healthcare team were explored in detail and included confidence and trust in the healthcare provider, appraisal of the provider knowledge of hypothyroidism, time allocated to healthcare, participation in decision making, and overall satisfaction with treatment of hypothyroidism. The survey was administered to an international population of patients with hypothyroidism using promotion through Thyroid Federal International harnessing its affiliates, partners, social media, and web pages, and also utilizing sponsorship by IBSA Institut Biochimique SA. This cross-sectional survey, aptly named E-MPATHY, resulted in 3915 responses from 68 countries and the results were subject to multilevel regression modeling (11). Although the inherent limitations of survey methodology need to be considered, the results of this analysis are intriguing as they not only confirm some prior observations, but also generate results that differ from other previous findings. The type of treatment for hypothyroidism (levothyroxine alone versus combination therapies), was not associated with patient satisfaction. This is in contradistinction to a previous survey based study in the United States (16), which showed greater satisfaction with combination Thyroid Page 4 of 6 therapies, and in particular desiccated thyroid extract, but in keeping with the results of a survey conducted in the United Kingdom (17). Such analyses of patient satisfaction with therapy are made more complex by the inherent difficulty in determining whether residual symptoms are thyroid-related or related to other aspects of life style and co-existent conditions (3). However, the investigators found that the healthcare team interaction with the patient was strongly associated with satisfaction with treatment. This finding was also confirmed in the earlier surveys conducted in the United States .former study (16) patients who changed physicians twice or more were more likely to be dissatisfied with their hypothyroidism treatment. In addition, patients taking combination therapy, whether synthetic or natural, were more likely to be satisfied with their physician. Regardless of their therapy, patients judged their lives to be profoundly affected by hypothyroidism (16). In the latter study (17), satisfaction with therapy was associated with being under the care of a thyroid specialist or a physician prescribing combination therapy. Dissatisfaction with therapy was associated with expectations of greater support from the physician and expectations of being referred to a thyroid specialist. The importance of the physician-patient relationship was also highlighted in a recent survey exploring “brain fog” in patients with hypothyroidism (18). The finding that various aspects of a patient’s interaction with their physician and healthcare team affected QOL and patient satisfaction is encouraging, as this holds the promise that enhancements in these relationships could have a positive impact on hypothyroidism therapy. Each of these studies have limitations based on their methodology. Surveys are subject to ascertainment bias with such collection tools being more likely to sample the outer bounds of the spectrum of opinions. It might also be hypothesized that those who have poor QOL or are dissatisfied with their treatment may be most desirous of sharing their views and experiences. Different results could potentially be obtained if those with positive and ambivalent experiences of their therapy were as willing to respond to a survey as those who had lower QOL or were highly dissatisfied with their therapy. These studies will hopefully motivate clinical researchers to conduct future high-quality trials that are specifically designed to study patient QOL, satisfaction and preferences in a way that does not leave thyroidologists being reliant only on data from on surveys with self-selected respondents. The American Thyroid Association’s clinical practice guidelines for treatment of hypothyroidism were published in 2014 (1), and a new taskforce charged with revising these guidelines will be convened shortly. This taskforce will incorporate patients among their panel members, a practice which has been recognized as being of critical importance (19, 20). Several areas will especially be in need of updating. Important among these is “enhancing the patient voice” and ensuring that the patient voice informs guideline recommendations. Not only will the writing group encounter the challenge of incorporating considerations of patient QOL, satisfaction, and preference into their deliberations, but any research gaps that are highlighted by their systematic literature reviews will serve to encourage future research into these critical PROs. The current article by Perros et al (11), serves as a timely and persuasive reminder of the importance of not losing sight of the patient perspective.

[Musicmonkey]

Interesting that the survey found that the majority preferred T4 monotherapy, but that does reflect that it's a minority who prefer (need) Combination

[Hidden in reply to Musicmonkey]

it’s very misleading though because T3 is never offered, it’s only given when patients probe more and fewer people are willing to self educate and/or question their doctor when that doctor tells them that they’re “normal” because their labs look “good.” Who knows how many people are out there living rubbish lives on T4 not even knowing T3 is an option. I lived like that for 9 years.

[Tantara in reply to Hidden]

My first test was 5 years ago (TSH 10.8). Only had two tests since, Aug last year TSH 2.8 and my last one being last month, TSH 5.6. Doctor refuses to test for anything else and says my range is normal. I am on 75mg Levothyroxine only. That is why I have joined here. Although I have not commented much, I am learning from you all fast. Thank you all.

[LindaC]

Most interesting. Where can I find this Perros et al article?

[diogenes Remembering in reply to LindaC]

Perros P. The impact of hypothyroidism on satisfaction with care and treatment and everyday living: results from E-Mode Patient self-Assessment of THYroid therapy (EMPATHY), a cross sectional, international online patient survey.

I'd hope Google could direct you.

[LindaC in reply to diogenes]

Oh, I'll find it - thanks! (EMPATHY), how they love their little jolly japes! Rather like TRAMP set up here 2016/17? when Armour was also outlawed.

This PPP effort seems nothing short of a cheap imitation of Gordon Skinner's 'World Thyroid Register'? I used to titter when rebutting vile endo critique of Dr Skinner by adding qualifications after his name: FRCOG, DSc, MD (Cum Laude), FRCPath, stating, "A virologist - certainly competent (if a GP is meant to be) - to dx hypothyroidism". I would also place the endo's qualifications when addressing him: BSc, MBBS, MD, FRCP. Sure, good medicine is about more than qualifications, such as integrity, compassion etc.

[diogenes Remembering in reply to LindaC]

I've now read the article in question. It baldly says that there is no difference between T4 and T4/T3 treatment in satisfaction , that T4 gives less problems than the combination, and that the main problem is patients' bad reaction to medical practitioners. So, for this group, the combination option is damned. Could be though that, relying on TSH as a treatment target, too little T3 is given to make a difference.

[LindaC in reply to diogenes]

Thank you, diogenes - most helpful. Would love to proclaim exasperation... 🔍👽🤠😅

[DippyDame in reply to diogenes]

Could be though that, relying on TSH as a treatment target, too little T3 is given to make a difference.

From personal experience I would say that that observation is spot on!

The 10mcg T3 max usually prescribed would not have touched the sides of my problem!

Until medics understand T3 and it's importance to (almost) every cell in the body I very much doubt that treatment, and consequent outcomes will change....and the madness and reliance on TSH will continue.

Not only is the combination treatment damned, also damned is any hope of T3-only treatment for the (low) cohort who do actually need it They will all continue to suffer....

Just my opinion....I'm no expert, just another curious patient travelling the long, bumpy, twisted road that is thyroid disease.

As an anecdote, if I may....I have Chronic UTI which flares up regularly. I take a daily prophylactic antibiotic but need a high dose for flares. I now think my bladder, with embedded infection, may be the consequence of many years of low cellular T3. I've had UTIs since long before I ever heard of T3!

Sorry ranting about T3 again....and thank you

[arTistapple]

Can I just say that this is in a slightly different tone from other Perros involved papers. Maybe getting with the flow?!

[loueldhen]

I was concerned about my hypo treatment/health when my treatment was T4 and I felt increasingly ill (7 years) and had ongoing visits to the GP investigating all sorts of nonsense whilst being told 'it couldn't be the T4 - it's just a replacement'.

Since it's been T3 (8 years) I have no relationship with any healthcare professional - as long as the tablets keep coming.

[LindaC in reply to loueldhen]

Yes, a storage hormone replacement. I didn't need more T4 [couldn't tolerate for less than a couple of months, yet not too bad on Armour - just enough T3 to make a difference]. I clearly needed T3 - being the active hormone - not the storage one. Good for you - be well xox

[Lottyplum]

i have to say the relationship between Dr+patient is SO important. I was with the same small GP surgery from birth to 68 and then we moved! No problem once hashimotos diagnosed+levothyroxine administered50+ years ago. Move house+to large medical centre + for last 12 months have had a year of hell+ some of that due to GPs ignorance+microscopic focus on my TSH levels!! I must be over medicated, reduce my levo+ bam, all my symptoms return with venge ance. GP talks to Endo - does he go for symptoms or numbers? Endo says numbers! What is wrong with these people? I'm 73 years old, had hashimotos for 40+ years+want my life back - but no one is listening!!!! I wish someone would ask me some questions for their research!