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Returning to a Patient-Centered Approach in the Management of Hypothyroidism

helvella profile image
helvellaAdministratorThyroid UK
25 Replies

If you watch the sea, as the tide goes out it seems to take forever. You keep thinking that it really must be low-tide. But it keeps receding. Eventually there comes a point at which it does just about stop going out, and maybe the odd stronger wave comes in a touch further than the one before. This happens a bit earlier or later depending exactly where you are. And some parts really confuse. But eventually we all agree that the tide really is rising, we scoop up our towels, and get ready to move…

Returning to a Patient-Centered Approach in the Management of Hypothyroidism

Jill Schneiderhan and Suzanna Zick

The Annals of Family Medicine September 2020, 18 (5) 388-389; DOI: doi.org/10.1370/afm.2602

Shared decision making is an important aspect of high-quality health care and incorporates understanding patients’ beliefs around how medication works, the potential side effects, and expected benefits. Gaining this understanding helps to guide the decision of which medications most closely align with patients’ beliefs and expectations. This may be especially important for improving adherence to chronic medications, and in particular, for thyroid medication where 40 to 50% of patients do not take their medication as prescribed.1

The historical context sheds light on this topic by highlighting the shift from patient-centered symptom management to one based on laboratory values, which diminishes room for the patient experience. Before the 1970s, hypothyroidism was treated with desiccated thyroid products (dehydrated porcine or bovine thyroid). Desiccated thyroid products contain a combination of thyroxine (T4) and triiodothyronine (T3) in an approximately 4:1 ratio, and historically were titrated to the cessation of symptoms, while monitoring for thyrotoxicosis.2 In the 1970s a shift occurred in both the supplementation and measuring of T3 and T4, which led to better assessment of what happened with replacement of individual synthetic hormones. It was noted that replacing T3 alone led to large swings in T3 levels shortly after taking the drug which did not mimic physiologic levels seen in euthyroid individuals. When, however, synthetic T4 (levothyroxine) was introduced it resulted in T3 levels that were normalized throughout the day instead of fluctuating. Thus, the idea that peripheral tissue conversion supplied all the T3 that was needed to normalize thyroid function took hold. This was confirmed by the development of the assay for thyroid stimulating hormone (TSH), which measured stability of thyroid function over time, and remained steady with levothyroxine-only dosing. As such, the end goal for the treatment of hypothyroidism shifted from symptom control to achieving a normal TSH.3 The focus on normal TSH, and concerns over the lack of batch-to-batch consistency in desiccated thyroid products (they are standardized for iodine content) led to the use of desiccated thyroid products being actively discouraged.4

This one-size-fits-all approach for treating hypothyroidism does not work, however, for all patients. Emerging evidence shows that for many patients, symptoms persist despite normal TSH values.5 In a qualitative study, patients who continued to feel unwell with normalized TSH reported feeling that their physicians were not willing to look further into why their symptoms were persisting.6 In addition, patients often reported that the vague nature of their symptoms along with lack of control over their symptoms, leave them feeling invalidated and without answers.7 In fact, these ongoing symptoms may have a physiologic cause. New information has emerged that conversion of T4 to T3 by exogenous tissue is more complex than previously described. For instance, patients on levothyroxine alone have higher T4, lower T3,8 lower energy expenditure,9 and ongoing abnormalities of lipid metabolism8; all pointing to a lack of appropriate thyroid metabolism. Further, in thyroidectomy patients the amount of supplementation needed to achieve normalization of T3 levels is such that it leads to suppression of TSH,10,11 which may explain why some patients lack complete resolution with normal TSH and feel resolution of symptoms with suppressed TSH levels.

One possible way of addressing these imbalances and persistence of symptoms is the addition of T3, which desiccated thyroid products naturally contain. A barrier to their use, however, is the ongoing concern that TSH will not be consistently maintained within normal ranges. Kuye et al12 has contributed to our understanding of this concern in their retrospective matched cohort study in this issue. They begin a much-needed investigation into whether patients prescribed synthetic levothyroxine compared with desiccated thyroid had differences in TSH stability over the course of 3 years. Their results in 870 hypothyroid patients matched for age, sex, and ethnicity showed no difference in longitudinal TSH stability between desiccated thyroid products and synthetic levothyroxine, and despite more variation in visit-to-visit TSH levels variability in the patients taking desiccated thyroid, all patients regardless of the thyroid medication were euthyroid 79% of the time.

Further prospective studies are needed to confirm these results and to explore differences in more diverse patient populations, such as Hashimoto’s thyroiditis as well as on quality of life and other important patient-reported outcomes such as fatigue and weight gain. This study does, however, provide helpful information that desiccated thyroid products are a reasonable choice for treating some hypothyroid patients. Keeping desiccated thyroid medications as an option in our tool kit will allow for improved shared decision making, while allowing for patient preference, and offer an option for those patients who remain symptomatic on levothyroxine monotherapy.

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helvella
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25 Replies
LindaC profile image
LindaC

Absolutely, helvella - thank you = spot on!

We now need a 'Task Force' to make this happen!

Hell Frozen Over
Tythrop profile image
Tythrop

I love your tidal metaphor. Is this a UK publication?

helvella profile image
helvellaAdministratorThyroid UK in reply to Tythrop

The authors are from University of Michigan Medical School, Ann Arbor, Michigan, USA.

And the publication:

About the Annals of Family Medicine

Last edited 07/02/2020 7:53AM CST

The Annals of Family Medicine is an open access, peer-reviewed research journal serving the needs of scientists, practitioners, policymakers, and the patients and communities they serve. It is the top-ranked North American primary care research journal in the world, and charges no fees for publication. The Annals is a collaborative effort of seven family medicine organizations and has been in publication since 2003.

Tythrop profile image
Tythrop in reply to helvella

This is impressive and hopefully difficult for NHS to argue against.

tattybogle profile image
tattybogle

well spotted helvella

.
tattybogle profile image
tattybogle in reply to tattybogle

the tide is coming

..
tattybogle profile image
tattybogle in reply to tattybogle

.... in :)

...
helvella profile image
helvellaAdministratorThyroid UK in reply to tattybogle

This went through my head!

Just a music video - sorry it probably needs you to go to YouTube.

youtu.be/Nl0eCz_WzDY

tattybogle profile image
tattybogle in reply to helvella

:) TSH .. a castle built of sand

nightingale-56 profile image
nightingale-56

This text gives hope of being treated better in the future, but the words of the song describe perfectly what we go through as patients seeing a Doctor. Thanks for posting helvella .

Jacs profile image
Jacs

Thanks for finding & sharing this, it provides a small glimmer of hope for future treatment, whilst outlining clearly the link between move from NDT /symptom treatment & TSH/T4 and patient’s declining health/satisfaction. A travesty that very few docs are willing to accept

Zazbag profile image
Zazbag

Thank you for posting this! An illuminating read.

SilverAvocado profile image
SilverAvocado

Very interesting!

Something that really jumped out at me: "thyroid medication where 40 to 50% of patients do not take their medication as prescribed"!!!

40 - 50% of patients sounds huge. No wonder even the most clueless discussions of thyroid hormone often include a mention that patients complain about it ;)

I guess many here would technically be included in the 40 - 50%!

helvella profile image
helvellaAdministratorThyroid UK in reply to SilverAvocado

I thought the wording was interestingly different to the usual “non-compliant”. With your point prominently in my mind.

SilverAvocado profile image
SilverAvocado in reply to helvella

It's interesting to see the writer compromising between the dehumanising language of medicine and the patient's point of view.

JAmanda profile image
JAmanda

Hallelujah!

knitwitty profile image
knitwitty

We live in hope !

helvella profile image
helvellaAdministratorThyroid UK in reply to knitwitty

Flintshire or Derbyshire? :-)

Mistydeb01 profile image
Mistydeb01

Most of the doctors would need further education on thyroid and ‘bedside manner’ before they could even start to fathom focusing on patients wellbeing and their symptoms

Wired123 profile image
Wired123

It’s strange that in America where there is predominantly private healthcare, the treatment of thyroid disease is just as bad as here in the UK on the NHS (or indeed in the private sector).

Yet in countries across Europe like Germany and Greece, T3 is readily available at low cost.

I’d love to understand the invisible mechanisms at play in the US and UK keeping people very sick when the solution costs literally pennies.

helvella profile image
helvellaAdministratorThyroid UK in reply to Wired123

Yet the NHS Tariff prices for levothyroxine are extremely low - far less than USA or Germany!

I suspect that some medicine prices in the UK work on a swings and roundabouts basis. A company agrees to sell one product at a very low price, but ramps up the price for another. Overall this might be reasonable in that the total medicines bill might be acceptable. But if you need one of the medicines that is expensive, you get affected.

(This is just guesswork.)

LincsLady profile image
LincsLady

Thanks for posting this - a really excellent and convincing piece of research. Since I stopped taking it 1 month ago I have lost 1 stone - doing exactly what I was doing when I was on levothyroxine but was gaining more and more weight every day/week/month until I was/am classed as morbidly obese with BMI 40. It will take me 6 months to reach goal but if someone can PM me the contact details of a functional endocrinologist in Lincolnshire (of who does Zoom/Team VC) who can prescribe T3 (Armour NDT etc.) then I could still lose weight but stop my TSH and TPO levels sky rocketing (I have Hashimotos). Please

😍

Bearo profile image
Bearo in reply to LincsLady

I expect you will have to start a new post to get your request noticed and replied to. But if you put “endo” and “Lincolnshire//Zoom” in the heading it should get seen.Good luck.

helvella profile image
helvellaAdministratorThyroid UK in reply to Bearo

That is sensible advice. This is unlikely to be seen by many - a new post stands much better chance of getting noticed.

LincsLady profile image
LincsLady in reply to helvella

Thank you x

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