Results of the 2017 Spring survey of hypothyroid patients – 12,146 individuals responded

[PR4NOW]

A year later we finally get the results of last years survey. Not very impressive for T4 mono-therapy. I find it interesting that a PhD did the write-up not an MD endocrinologist. Thyroid wants $51.00 to read the full report, maybe someone can find a copy? PR

Link

deiodinase.org/2018/04/20/r...

Hypothyroidism is a common disease that requires lifelong treatment with thyroid hormone. Current guidelines recommend daily tablets of levothyroxine. Clinical studies indicate that some levothyroxine-treated patients remain symptomatic as compared with control individuals. These patients may complain of sluggishness, lethargy, sleepiness, memory problems, depression, cold intolerance, hoarseness, dry skin, body weight gain, and constipation; patients may also change physicians multiple times in pursuit of better quality of life. To gain further insight and patients’ perspective on the treatment of hypothyroidism the American Thyroid Association organized an online survey dedicated to hypothyroid patients in the Spring of 2017.

In this survey, hypothyroid patients were asked to rank satisfaction with their treatment and their treating physician on a scale of 1 to 10, with 10 being the maximum. Responses were categorized according to their therapy, which was identified as (i) levothyroxine, (ii) levothyroxine plus liothyronine, or desiccated thyroid extract (DTE).

A total of 12,146 individuals participated in the survey, with an overall degree of satisfaction of 5.0. Many patients also reported other important clinical conditions such as depression, stressors or other medical conditions, and were subsequently eliminated. Of the remaining 3,670 individuals, those taking DTE reported a higher median treatment satisfaction of 7.0 compared to other treatments. At the same time, the levothyroxine treatment group exhibited the lowest satisfaction of 5.0. Individuals taking DTE were also less likely to complain about weight management, fatigue/low energy levels, mood, and memory, compared to those taking levothyroxine.

In conclusion, a subset of patients with hypothyroidism is not satisfied with their current therapy. Higher satisfaction was reported by those patients taking DTE. Future studies should investigate why DTE is preferred by this subset of dissatisfied patients.

Contributed by Sarah Peterson, PhD

[helvella]

Reads as if DTE shuts patients up!

Individuals taking DTE were also less likely to complain about weight management, fatigue/low energy levels, mood, and memory, compared to those taking levothyroxine.

It doesn't seem to say that they are suffering less from weight management, fatigue/low energy levels, mood, memory. Just their level of complaining is lower. OK - so I might be being picky over their language. All too often we read past something and only later realise that we were not picky enough first time.

The conclusion is a bit odd:

In conclusion, a subset of patients with hypothyroidism is not satisfied with their current therapy. Higher satisfaction was reported by those patients taking DTE. Future studies should investigate why DTE is preferred by this subset of dissatisfied patients.

There is no evidence that those on DTE were in the dissatisfied subset - they might never have been on levothyroxine monotherapy! And if they switch to DTE and become less dissatisfied they won't be part of the more dissatisfied subset... If you see what I mean. Someone should have read and re-read that before publication. (Even if the full paper makes more sense.)

Nonetheless - good to read in print that the satisfaction levels are markedly different.

[ShootingStars in reply to helvella]

Oh gee, "complaining". Poor choice of words! I wonder why some people respond positively to DTE over solitary Levo? T3, anyone?? Bueller? Goofy study and article. The #1 reason that most people respond positively to DTE over plain old T4 is that because so many people need T3 besides T4! This should be a no brainer for anyone attempting to study thyroid or thyroid medication, or for anyone who takes DTE. DTE contains both T4 and T3, and Levo is only T4.

DTE comes with many dissatisfied patients, too, likely for two main reasons: 1) they are not getting enough T3, since DTE contains a fixed amount compounded into one pill. When taking only DTE, if a patients needs more T3, in order to get more T3, they have to take more T4, often resulting in too much T4, and 2) there are plenty of people with Hashimoto's cannot take DTE due to either allergic reaction to some additive, or due to autoimmune response to pig thyroid or to something that the pig consumed.

[cwill in reply to ShootingStars]

Qualitative researches are normally very keen on language. We need to see the original data collection tool. I’d be very worried by a doctoral student that uses complain rather than report but possibly the nuance was deliberately lost between original work and this report that is not even written as an abstract.

Normally I would trust a doctoral student that is well supervised and is asking the right questions over an endo who is not well versed in research methodology.

[ShootingStars in reply to cwill]

Well, who ever conducted the study, it doesn't sound like they were much of a critical thinker, nor a logical thinker. Any person who understands thyroid function and who wanted to conduct a study would have skipped the comparison of apples (T4) to oranges (T3 and T4, i.e., DTE), and opted for a more useful study. There is no mention of qualifications, such as optimal levels of FT3 and FT4. For all we know, the people who didn't have positive report of DTE are not optimal, and the others were. Or perhaps they had diagnosed or even undiagnosed Hashimoto's? Or other autoimmune diseases complicating things?

A doctoral student is only as good as his/her supervisor. Endocrinologists were once where those doctoral students are; on their way to obtaining their doctorates.

The most useful study would be one comparing four types of patients in two groups. Group 1: Patients who report the least symptom who are on T3, T3 and T4, DTE, and T4, and recording their levels of FT3 and FT4 where they have the least symptoms. Group 2: Patients who report the most symptoms who are on T3, T3 and T4, DT3, and T4, and recording their levels of FT3 and FT4 where they have the most symptoms.

[ShootingStars in reply to cwill]

cwill , did you meant quantitative research, since this project utilized a survey to collect the numerical and measurable data, resulting in statistics, as opposed to qualitative research, which utilized interviews and focus groups, resulting in empirical data, often demographics and trends?

[cwill in reply to ShootingStars]

If this is an exploration of patient experience, in questionnaire form using open questions and allowing personal expression then the data is qualitative, ideally triangulated with other data sources. If closed questions and guided responses then more quantitative but to be used with other quantitative methods. Questionnaires are very difficult to get right. The question of patient experience should be an individual exploration. However the outcome of this appears to be the same: significant numbers are happier on DTH. So the research issue should now be to follow thousands of suspected thyroid patients in a longitudinal study gathering as much data as possible especially their symptoms, drugs, and comprehensive lab results. And to identify those that don’t respond to levo within current practice, but mindful of the role of gender bias and the disempowerment of patients in the hypo group.

conductingresearch.blogspot...

[ShootingStars in reply to cwill]

These weren't open questions. The bulk of the data was obtained through closed multiple choice questions. There is no expression possible through by ranking satisfaction, perception, need for need treatments, or the impact of hypothyroidism on their lives on a scale of 1-10. In the last sentence data is collected by categorizing treatment types. Sex and age were multiple choice. It's unclear if "additional diagnosis" also was multiple choice, ranking or freedom of expression, or how "prevalence of symptoms" was conveyed.

"Respondents were asked to rank satisfaction with their treatment for hypothyroidism and their treating physician. They also ranked their perception regarding physician knowledge about hypothyroidism treatments, need for new treatments, and life impact of hypothyroidism on a scale of 1-10. Respondents reported the therapy they were taking, categorized as LT4, LT4 and liothyronine (LT4 + LT3), or desiccated thyroid extract (DTE). They also reported sex, age, cause of hypothyroidism, duration of treatment, additional diagnoses, and prevalence of symptoms.

[SilverAvocado in reply to helvella]

This seems to be what we see in studies that mention quality of life all the time. It is one of my big bugbears!

Symptoms and quality of life are never said to have ACTUALLY improved, it's always measured and reported to suggest a bit of distance from reality.

Often it is something like: the patient's score on QoL scale was 6 rather than 4. And then no further discussion or analysis! I was really pleased that one of Diogenes recent papers included QoL measures in the actual central analysis of the paper. It was amazing to see!

[cwill]

I’m not getting anywhere finding the full article link. This needs to be read in full as if 12000 odd take the survey but you only fully analyse about 3000 data sets that in itself is worth examining in detail. Just woken but read it twice and somewhat astonishing. Normally there is a link to the full article with the summary but I have got no where so far.

[ShootingStars in reply to cwill]

Here's more info: liebertpub.com/doi/10.1089/...

[cwill in reply to ShootingStars]

Thank you. I will see if I can get the full article.

[ShootingStars in reply to cwill]

It looks like we'd have to pay $51 USD to read it. Considering the abstract, no thanks.

[cwill in reply to ShootingStars]

I have asked around for the full article. We need to understand the tool and the way they arrived at their conclusions. Seeing the questionnaire is a real eye opener usually. And this is published so someone will be quoting it.

[ShootingStars in reply to cwill]

See above response as to how they arrived at conclusion.

[humanbean in reply to cwill]

deiodinase.org/wp-content/u...

The link to the full article now appears at the bottom of the article on the link posted by PR4NOW.

[SilverAvocado in reply to cwill]

I found that very suspicious! They excluded patients who had other illnesses, and also 'stressors'.

But as we know, hypothyroid symptoms can be identified as other illnesses, particularly depression which is mentioned specifically. And being ill with htypothyroid is a substantial stressor in itself.

That makes me concerned that the 3,670 they ended up with, which is a very small subset of the original sample, are systematically different from the population as a whole. This is a huge issue in statistics at the best of times! But when excluding 70-ish% of the sample, it seems unavoidable.

[crimple]

I still keep asking if a healthy thyroid produces T4 and T3 why are we expected to be fully well on T4 only?!

[ShootingStars in reply to crimple]

It all depends on your own individual levels of FT3 and FT4, and if you are able to convert T4 to T3 or not. Many people do, but not everyone does. If you convert well, then you only need to supplement T4. If you're like me, and you don't convert well, then you supplement both T3 and T4.

What are you levels and the ranges? Are you optimal in both FT3 and FT4, and do you have no hypo symptoms? Have you had your thyroid antibodies tested to rule out that autoimmune thyroid disease is not the cause of your hypothyroidism? These are called TPOab, TGab. Many of us also test TSI (Graves) just to check to see if we have those antibodies, too. In rare instances, people have both Hashimoto's and Graves antibodies.

[crimple]

I was diagnosed hypo 11 years ago and TPO levels increased 5 years ago. All my blood tests show under range TSH, mid range T4 and less good T3 levels. Was taking 112.5mcg T4 have now been on 100mcg T4 + 12.5 mcg T3 and about to test levels again before another increase to 18.75 mcg. I have good levels of all vitamins, above range B12 and 120 Vit d

[ShootingStars in reply to crimple]

Hi crimple. What are your symptoms? You have hypothyroidism caused by autoimmune thyroid disease, Hashimoto's. Are you talking about Total or Free T3 and T4? The correct tests are called Free T3 and Free T4. The total tests are incorrect tests because they are the total of your free/unbound/available levels and your unfree/bound/unavailable levels, and they do not tell you your correct status.

What are you doing for your Hashimoto's? There are multiple reasons why your TPO has increased, not of which are all too good. You definitely don't want those antibodies to increase if you can help it, and you definitely need to do all the right things to try to bring those levels down. Climbing antibodies means a harsher attack on your thyroid. This can interfere with absorption of your meds.

Yes, your TSH should be suppressed when on medication and when one or both levels are in a good zone of the range. Under range is fine, especially when both are optimal. The goal is to get both FT3 and FT4 optimal. If your tests are your Free's, and your FT4 is over 1/2 range, then this is good. If your FT3 levels are not up where they should be, over half but closer to 3/4 range, then that means that you are not converting T4 to T3. This means that you need more T3 to help out with what your body is lacking. Do you mean increase T3 by 18.75, not T4? 18.75 is an odd increase.

120 Vitamin D sounds really high. What is the lab range? The top of my D lab range is 100. If I was 120, I'd be toxic. I hope you're not at toxic levels. This will make you feel not well. If you're toxic, you'll need to stop taking D for several weeks, then re-test and take less D from then on out.

[Marz in reply to ShootingStars]

Measurements for VitD in the UK are different from the US - yours is ng/L and the top is suggested at being 100 - in the UK the measurement is pmol/L and the range can go to 150 - so 120 is just fine

[ShootingStars in reply to Marz]

Thanks for the clarification. I hope that’s the case. Do all the labs in the UK have the same range for all the tests? I’ve noticed some thyroid ranges vary. Maybe it’s not the same of D?

[Marz in reply to ShootingStars]

I live in Crete so the ng/L measurement is used here. It is the case that the UK uses nmol/L as the measurement of D3 - certainly based on my reading of this forum for over 6 years.

Yes thyroid ranges do vary - VitD not ...

[ShootingStars in reply to Marz]

Thank you! 🙏🏼 Crete sound amazing! Have you always lived there?

[Marz in reply to ShootingStars]

No - hubby and I retired here in 2004 ....

[ShootingStars in reply to Marz]

Lucky you! Sounds divine! 😎

[cwill]

“At face value, these results indicate that although physicians believe that hypothyroidism is an emi- nently treatable condition, a portion of such patients believe their lives have been greatly affected by the disease and are unhappy with their treatment and physicians. Almost univer- sally, they believe there is a need for the development of new treatment forms. It is also remarkable that there is a clear preference for DTE in the whole group, as well as when the group was broken down into multiple subgroups. Of course, the study is limited by the potential intrinsic sample bias. However, the suggestion that something ‘‘real’’ is being captured is bolstered by the finding that the survey did not demonstrate a clear positive patient response to synthetic combination ther- apy with LT4 + LT3.”

Direct quote. Will post any other that are relevant.

[ShootingStars in reply to cwill]

No, it’s ok. You don’t have to. You mean “irrelevant”? It just keeps digging itself a bigger and bigger hole!

New treatment forms???? Like what, magic??? Treatment that is something besides the hormones those of us with thyroid disease lack? Some special sauna that steams thyroid hormones into our body through the pores of our skin? A shot we can do daily, one for each hormone, sometimes several times a day for T4? New treatment forms? 🤦🏻‍♀️ 🤣😭

This study just keep getting dumber and dumber, and more and more worthless! To have captured that many patients attention and the opportunity to collect relevant data, yet they didn’t. Wasted effort.

Again, in absence of have knowing if these patient’s levels were optimized (I’m sure most were not based on so many being so unhappy with treatment)) and knowledge of those exact levels, patients stating their synthetic T3 and T4 experience is irrelevant and meaningless. Did the patient take meds properly? Do they have autoimmune thyroid disease? If they do, is it being addressed? Were both their levels optimal? Were they on the right dose of medication? Should they have even been on T3 and T4 based on bloods in the first place? ????

[cwill]

They conclude the discussion:

“Definitive trials need to be ade- quately statistically powered to detect clinically significant changes in important patient outcomes, attempt to provide steady levels of T3, and specifically target individuals who are symptomatic. Failure to conduct well-designed studies to advance understanding in this area promotes reliance on anecdotal case reports/series, self-report survey studies (such as this one), and observational registry data. The QoL issues raised by this survey need to be considered when making medical decisions to render patients permanently hypothyroid, and these issues should be discussed with patients. More research is also needed into weighing the risks and benefits of strategies to preserve thyroid function in situations where this may be a reasonable option...”

[diogenes Remembering]

I've asked one of my colleagues for a reprint. Will send to Louse Roberts at TUK when received.

[diogenes Remembering]

I've successfully received the MS wanted, and have forwarded it to Louise Roberts at TUK for your full access.