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Topic is The Current Synthroid (T4 only)Treatment of Hypothyroid, Its Effectiveness and Its Negative Side Effects. More research is needed to improve the treatment and reduce negative side effects. If a survey were given amoung hypothyroid…

NOMINATED TOPIC | February 26, 2012
Briefly describe a specific question, or set of related questions, about a health care test or treatment that this program should consider.

Topic is The Current Synthroid (T4 only)Treatment of Hypothyroid, Its Effectiveness and Its Negative Side Effects. More research is needed to improve the treatment and reduce negative side effects. If a survey were given amoung hypothyroid sufferers, it would be clear this "standard of care" needs re-vamping.

Does your question include a comparison of different health care approaches? (If no, your topic will still be considered.)

no

If yes, explain the specific technologies, devices, drugs, or interventions you would like to see compared:

I don't mention any comparisons, however there are several drugs used to treat thyroid...none of which have been approved by FDA as I understand. Thyroid disease is prevalent enough, there should be more definative treatments, with statistics other than a normal lab test that shows effectiveness. Perhaps trying T4 with T3 medications; I am not the expert, but I realize doctors are treating the blood tests, not the patient, and shunt them out the door, never to listen to how the patient really feels under this treatment.

What patients or group(s) of patients does your question apply to? (Please include specific details such as age range, gender, coexisting diagnoses, and indications for therapy.)

Patients with hypothyroid condtions, primarily women of all ages, but ones who have been diagnosed long enough to experience the negative side effects of and ineffectiveness of Synthroid (T4 only) treatment. Coexisting diagnosises may include fatigue and body pain, depression and suicidal thoughts, alopecia, chronic acne, Raynauds phenomena, as well as numerous hormonal issues since the thyroid contributes to several bodily functions.

Are there subgroups of patients that your question might apply to? (For example, an ethnic group, stage or severity of a disease.)

Possibly thyroid patients who have been on T4 replacement for a significant period of time.

Describe the health-related benefits you are interested in. (For example, improvements in patient symptoms or problems from treatment or diagnosis.)

Imrovement in symptoms: many times synthroid puts lab tests into normal range, making the doctor happy, but does not take away the patients symptoms. Furthermore, many suffer from acne, dry skin, cold intolerance, balding and thinning hair, extreme changes in hair health and texture, depression etc etc. Diabetes patients now can live a very normal life because they kept doing research to improve. Unlike hypothyroid disease, once they found something that produced good lab results they wiped their hands clean of it. But we are like diabetics in a way, we want to live normal lives on our treatment.

Describe any health-related risks, side effects, or harms that you are concerned about.

Self esteem issues can lead to depression and suicidal thoughts. If you feel like you are dying every day, and all the doctors tell you synthroid is "IT", then you can reach a point where you don't have a lot to look forward too. I have experienced suicidal thoughts when I hurt so bad I couldn't walk, all I wanted to do was sleep, when my face was covered with acne and my hair was falling out by the handfuls, and the hair that I did have was like a scare crow. And yet, the lab tests said I was just fine! I know I am not the only one who experiences this. But that is why the research has stopped for hypothyroid, because we aren't dying from it anymore. So why bother, its a closed case. But many patients certainly aren't living either and I believe the current standard of care being Synthroid (or the generics), cannot be the be all to end all. There is something else out there, and I can only hope I am still alive when they discover it so I can look back with all the other thyroid patients and laugh about what we used to have to go through.

Appropriateness for EHC Program

Does your question include a health care drug, intervention, device, or technology available (or likely to be available) in the U.S.?

unsure

Which priority area(s) and population(s) does this topic apply to? (check all that apply)
EHC Priority Conditions (updated in 2008)
None
AHRQ Priority Populations
None
Federal Health Care Program
None

Importance

Describe why this topic is important.

According to above, its not a priority condition as of 2008. Thats why this should be important, because its been swept under the carpet. Just ask hypothyroid patients if they want to be heard, most patients have just been told there is nothing else to be done, you are imagining all those symptoms, so just deal with it. And so thyroid patients have been silenced.

What specifically motivated you to ask this question? (For example, you are developing a clinical guideline, working with a policy with large uncertainty about the appropriate approach, costly intervention, new research you have read, items in the media you may have seen, a clinical practice dilemma you know of, etc.)

I have had personal experience, I am a mecial professional and I have an understanding of the human body. I know enough about enough that I won't just accept what I am told. I have read many personal experiences via forums, magazines,newspapers etc. I have personally know several hypothyroid patients who are not living normal lives. I realize its not highly empiracal data that holds much weight, obviously, otherwise the research on treatment options would not be so stagnant.

Does your question represent uncertainty for clinicians and/or policy-makers? (For example, variations in clinical care, controversy in what constitutes appropriate clinical care, or a policy decision.)

yes

If yes, please explain:

Uncertainty for clinicians would be an issue, as they have been taught to treat hypothyroid with synthroid, re-test in 3 mths (if you are lucky) and make adjustments if its not in range. And sadly, the range is something clinicians can't agree on. The old range is 0.5-5 and some new range is 0.3-3, but some doctors follow one range and some the other. Lets face it, if you can establish a correct range to dianose a disease, how can we be sure you can effectively treat it? And one doctor would prescribe synthroid for a TSH of 4, but the other might not prescribe until a TSH of 8. Currently there seems to already be uncertainty.

Controversy in appropriate clinical care: Treat clinically to alleviate the hypothyroid symptoms beyond an elevated TSH. Treat the patient.

I am unsure about how the politics work to get research for this particular topic that is presumptiously considered a dead topic.

Potential Impact

How will an answer to your research question be used or help inform decisions for you or your group?

Solutions for hypothyroid sufferers, as well as medical treatment for the patients whose doctors do not qualify them based on a skewed TSH normal range. It may also raise awareness so those patients that have not even had as TSH test, will now be screened to identify thyroid conditions early on. The thyroid regulates many bodily procesesses, for example one is blood cholesterol; a hypothryoid can produce dyslipidemia and early detection can yield a beter prognosis for cardiac health.

Describe the timeframe in which an answer to your question is needed.

Ten years at most. I would like to feel good at some point before I expire, and, would like to be free of acne and have a little hair on my head.

Describe any health disparities, inequities, or impact on vulnerable populations your question applies to.

Vulerable populations would be patients with concomitant diseases and conditions. Thyroid disease causes enough ailments alone to at times disable a person.

Nominator Information

Other Information About You: (optional)
Please choose a description that best describes your role or perspective: (you may select more than one category if appropriate)

Solutions for hypothyroid sufferers, as well as medical treatment for the patients whose doctors do not qualify them based on a skewed TSH normal range. It may also raise awareness so those patients that have not even had as TSH test, will now be screened to identify thyroid conditions early on. The thyroid regulates many bodily procesesses, for example one is blood cholesterol; a hypothryoid can produce dyslipidemia and early detection can yield a beter prognosis for cardiac health.

Are you making a suggestion as an individual or on behalf of an organization?

Individual

Please tell us how you heard about the Effective Health Care Program

In Goodhousekeeping magazine

Page last reviewed November 2017
Page originally created February 2012

Internet Citation: Topic is The Current Synthroid (T4 only)Treatment of Hypothyroid, Its Effectiveness and Its Negative Side Effects. More research is needed to improve the treatment and reduce negative side effects. If a survey were given amoung hypothyroid…. Content last reviewed November 2017. Effective Health Care Program, Agency for Healthcare Research and Quality, Rockville, MD.
https://effectivehealthcare.ahrq.gov/get-involved/nominated-topics/topic-is-the-current-synthroid-t4-onlytreatment-of-hypothyroid-its-effectiveness-and-its-negative-side-effects-more-research-is-needed-to-improve-the-treatment-and-reduce-negative-side-effects-if-a-survey-were-given-amoung-h

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