Beware of Dogmatic Thyroid Internet Groups and Cognitive Dissonance

Someone looking for thyroid advice can go through the following stages when they land on internet forums dispensing advice:

1.  The Journey Begins – don’t feel well

2.  Seek Help – most likely from a medical doctor

3.  Disappointment/Disillusionment – not getting any better, and may have spent a fortune on doctors

4.  Seek Alternatives – find thyroid internet support/chat groups

5.  Hope – maybe their protocol will work

6.  Caution – some will be wary and questioning, but others go straight to

7.  Enchantment – buy-in, assimilation, commitment to protocol

8.  Love – they experience some improvement after starting and want to share the process with everyone and give advice, just like they were given; some become the “new” moderators

9.  Plateau/Decline – as time passes, improvement stops and some get worse as they take their dosages higher and higher, thinking more is better

10.  Crash and Burn – now worse than before any treatment

11.  Angry/Disgusted/Frustrated – what am I doing wrong?

12.  Blame The Patient – groups/moderators blame the patient for not getting better; it is not that their protocol is faulty, but that some other electrolyte or hormone is too high or too low and preventing thyroid optimization

13.  Realization – I am so messed up, and I’ve been had

14.  Hit Bottom – Now what?

15.  Questions and No Answers – some who complain or question the protocols are actually “booted” out of the group and left to fend for themselves; some migrate to other groups still in search of answers.  Sadly, many actually blame themselves for not “correctly” following the protocol.  Very few consider that the protocol itself could be flawed and might not work for everyone, or that it is so complicated, that few can make it work.

What is my point in writing all of this?  It is to caution people that there are sources of terrible thyroid misinformation out there, and I have watched in horror as more sick, innocent people continue to fall prey to these groups.  Just because someone says it’s so doesn’t make it so.  Where did this advice come from?  Did someone make it up years ago and its just been passed on like some old wives’ tale?  Is there any research to back up these protocols?  Do the people posting sound like they’re getting better or worse?

Every now and then a new member will ask where the success stories are.  The answer given is that people regain their lives, get better, and then no longer post.  Little do they know that some leave in disgust, worse than ever, or that others have been banned from the group because they questioned the protocol when it didn’t work for them.  This is where cognitive dissonance, or rationalization and denial, comes into play.  I see people floundering, who are in such a vulnerable, sick position, that they are willing to try anything to regain their health, and they completely discount and ignore all the obvious red flag warnings and their own intuition.  One red flag warning is a group that moderates every single post.  What don’t they want you to see?  People believe what they want to believe, because they need hope that some protocol somewhere will restore their health.  Mainstream medicine didn’t work, but maybe, just maybe, this will!  Especially if they have already started on the protocol, they may gloss over any negative side effects they may be experiencing, and continue on, hoping things will improve.  To acknowledge that what they are doing could be wrong, would also mean acknowledging that they did something foolish.  The brain cannot handle belief in polar opposite arguments, so rational arguments and research will be discounted and dismissed.

My advice?  Question everything!  Listen to your body and your intuition and never go against your better judgment.  Be warned that both too much and too little thyroid hormone can greatly affect your brain and ability to think and reason.  Once you embark on these protocols, you may not be able to think clearly.  Are you prepared for that?  Is there someone who can help you monitor your progress?  Who can pick you up in case you stumble?  There are some groups giving good, knowledgeable advice based on sound principles, but they are not as popular as those that are sources of terrible thyroid misinformation.  Do your homework and listen to your body, not some person on the internet with a “god” complex as a moderator.  Your health is at stake.  A moderator or group that has only one protocol, theirs and only theirs, cannot possibly give good advice.  Be wary of rigid, dogmatic, authoritarian, “because I said so” answers.  Only trust groups whose moderators are open-minded and willing to engage in discussions.  We are all so different that no one protocol, nor one medication, should be expected to fit all of us.

There is also much sincere, but misguided advice given by patients to other patients.  Be warned that some of the sickest patients give the most advice.  Here are some of the most memorable, misinformed posts (paraphrased) I can remember reading:

Is your hair falling out?  Then don’t wash it so often or brush it too much.

Your body will only absorb as much thyroid meds as it needs.

I am on 162.5 mcg T3 and my heart is racing.  What am I doing wrong?

I am on 12.5 mcg T4.  Why do I feel like crap?

Again, my point is that some patients, while well-meaning and wanting to share, may know nothing about thyroid physiology and how thyroid hormone affects the entire body.  Or worse, in their brain fog, they have all the concepts mixed up!  A little knowledge is a dangerous thing.  Doctors may know some thyroid physiology, but are often overly reliant on misleading TSH and lab ranges.  Unfortunately, you will have to educate yourself and be your own patient advocate.  That is the current state of thyroid treatment today.  I sincerely hope that everyone reading this finds the answers they seek.  We all deserve better health!

 

31 thoughts on “Beware of Dogmatic Thyroid Internet Groups and Cognitive Dissonance

  1. This is an excellent post. I went through all of the steps above, including being ostracized and ignored by mods when I began to ask questions and challenge the conventional wisdom espoused by those mods on the boards and forums that they lord over. There are indeed terrible sources of thyroid/adrenal information out there that should be avoided, even though most contain a fair amount of good information.

  2. I also went through all of these steps too. For some it happens faster than others though. Then you just have some people who will never be able to admit what they have been doing for years, is in fact making them worse. It is just too hard for their minds to accept they have been misled and are now in a worse position than when they started.

    It may take some years until they can finally go from step 8 (love) to step 13 (realization) even if they have been suffering all of this time with horrific symptoms. Usually these people who are suffering the most will be the biggest defenders of the protocol too and will be the tattletales or mods of the group. At times these forums feel like a health cult to me, worshiping a person who has laid down a specific set of dogma and anyone questioning it are banished. :) It’s way too scary to me.

  3. Jason, Dana,
    I’m right there with you both, struggling even yet. Made the mistakes, suffered for them, and still, years later, trying to get a balance……
    This is all much more complicated than those kinds of dogmatic internet lists, and the dogmatic and also ignorant doctors, would have us believe. I find it extremely interesting that both ends of the spectrum blame the patient…….
    and that like the internet groups that dump people who begin to question or simply do not get better with their advice, or get worse, doctors too dump patients who don’t get better or who get worse, or who begin to question too much or contradict……..I don’t really see the difference anymore…neither end of the spectrum serves the victim……oops, patient……..
    sol

  4. Hi,
    I just wanted to say that I was one of the unfortunate one that followed a thryoid group for almost two years. I was on cytomel for that length of time and it ruined my life. My hair got so dry and brittle it broke off. It looked like it was burned. I am now trying to fix the problem but I know it will take a long time for my hair to be back to normal. Also, when I question some the t3 protocol I was told they couldn’t help me any longe it was out of their comfort zone. So I was left alone worse than when I started. Just want to let everyone know these groups for the most part are not safe to follow.

  5. I too have been down this path and just found this blog. Thank you so much for honest information. I am a silent member of a few thyroid/hormone forums and most of them do seem to have this type of mentality that only their way is the correct way for everyone.

    When I began reporting hyperthyroid symptoms on modest doses of thyroid medications I was told that it must be due to low cortisol or iron or whatever but never that just maybe I didn’t need that much thyroid. But indeed that was what it turned out to be.

    I had reported high resting pulse of 99 or more, elevated body temperatures, shaking hands and jittery feeling, as well as heart pounding, and a swollen thyroid, but they insisted it couldn’t be too much medication. I stopped my meds for a few days and all symptoms went away. I was told everyone needs at least 2 grains of Armour or more. And that I should take high doses of iron. Iron can be toxic if you take too much. Also hear the hydrocortisone thing, the T3 only…been there, tried most of it.

    Some years later I have so-so labs but chronic hair loss that no one can pinpoint. I am now reading that my very low T4 levels are actually a problem despite forums and my doctor insisting I don’t need T4. I’ve never had decent T4 levels even before I began treatment. I suspect my thyroid doesn’t make it.

    But anyway, thanks for writing this post. I don’t think many people realize that some forums are too rigid and are not considering that individual needs are going to vary.

  6. I was so glad to find this website. I have researched the thyroid for eight years. I realized that most doctors know very little about the thyroid, just go by the range and don`t think outside the box. I belong to a thyroid group which at first, I was thrilled with, not so much anymore. I find they ignore me when I ask a question they don`t like. Also realized I`d better research everything they said. That is how I found you. You make so much sense, wish everyone would read your site, especially doctors! Thank you!

  7. The main thing that I have discovered is that one must pay close attention to what your body is telling you and that no one person, clinic, or Internet site seems to have a full understanding of what is going on with the body and thyroid hormones – including this site. Although there is some interesting information on this site there is also interesting information on other thyroid sites. You just cannot buy into any one thing – you have to be discerning and filter it through what your body is telling you and take responsibility for monitoring all of your hormone levels and other key functions such as your adrenals, iron, and liver functions. Even then – one may not be able to get everything in balance but how you feel and how you are functioning seems to me to be the main barometer. I take dessicated thyroid hormones with additional T3 supplementation that includes selenium. I rely on alternative medicine for guidance and supplements to balance my adrenals, stomach absorption and other key functions. I feel great and have for almost two years now – but not all tests are perfect and I just have to be vigilant about assessing whether or not anything is going wrong from any negative test results that I am unable to alter with supplements.

    • Hello Stacey,
      Not sure you will get this email because I have jut been reading your post written on 21 April 2013…
      However, if you get this email I would greatly appreciate hearing from you. You seemed to be doing quite well, but not overtly so – suppose with thyroid problems one can never feel really well again, but as long as life is tolerable. Are you still feeling you are managing your treatment well? If so what treatment are you following, please?
      Do hope you are well and to hear from you.
      Thanks in advance, and very best wishes.
      Jocelyne

  8. Fabulous article, Barb. Came here to read an article that was complimented upon and stayed to read for hours.

    You’ve hit the nail on the head about internet forums (fora?). I’ve discovered the same thing in migraine groups – and goat groups! Animal groups are probably the worst dictators I’ve seen.

    Your way of presenting information is a perfect fit for me. Love it all, love this article tons.

  9. I found your site very informative, esp. on D3,2,&1. Not many get how these work, for sure.
    On the Forum thing-I’m on ThyroidUK , it’s a very level headed and well moderated group. We get a few posters from USA on there too :) people get a lot of considered help on there.
    Your comments on sites in general are worth noting though, not just for Thyroid stuff.
    In your main article you mention RT3 ratios being nonsense but you equate the same value to both low and high T3 -without qualification.
    Please revevalute how you present this.
    Regards -from England

        • I believe rT3 is a symptom of a problem, not the cause of a problem, and to eliminate it from the body does’t really solve the underlying cause. There’s a much more detailed explanation with charts in my book.

  10. Great advice “Question Everything”
    Really, I can “post a comment” without “being a member?” Thank You! I am way too tired, depressed, angry and having a huge pity party…for that!

    I’ve been searching online high and low for any and every thing that can help me with my body’s adrenal (on cortef 30 mg for about 3 months?) thyroid /high RT3 hell.

    I get one recommendation online and then another online and then my Dr. who seems to follow this cytomel/ cortef only protocol for High RT3. I have lowish cortisol in the AM and AFTERNOON but it gets high at night. taking cortisol freaks me out because I do not need high cortisol all day AND night for more complications. I can’t sleep and before “Cortef” at least I had my night owl hours of feeling “okay”

    I keep reading about this “flooding” and “releasing” and how it takes all this time, time, time..but meanwhile I cannot tolerate the cytomel or the extended release cytomel unless it’s 5mcg’s or below.

    But it sure felt nice reading this site.. something to read with at least a SPARK of sanity. RT3 and just ANYONE to reiterate about the complete antithesis you will find online about ANYTHING at all!

    I’m also most open for suggestions about Rt3 and Cortisol. anyone with luck? how to get myself off this “Cortef” 5mg at a time seemed to be too much. anyone been here done this and feels better? Is there hope? Options to feeling better other than standing in traffic or many others I’ve considered..anything inspirational hopeful is most welcome.

    My poor BFF doggie needs a walk anyone have that kind of energy? I pay well. poor guy should not suffer coz I feel like hell.
    I hate long posts and here I am doing a long post. sorry.
    ALL Ears here..anyone, been there done that, do this, all better? HOPE?

  11. Sure wish I had read this before swallowing all the expert group opinions on what is probably one of the largest thyroid forums. A year and a half later and I am a wreck. I am going to try going back to T4 only hormones and add a bit of dessicated to it now. If that doesn’t work, I don’t know what I will do. Thanks for your blog. It’s been a big help.

  12. After reading all of the above and other related articles to this I am now left totally bewildered and confused. Who do we believe in the end. I was taking Levo for 18 years and felt no better, I have recently researched a lot over a year and collected so much information. I have started treating myself with T3 but confused. Not feeling better, come off the Levo and now feel totally upset by it all. Don’t know what to do anymore…….

  13. Hello, I came here looking for a thyroid group? Well, I’ll comment anyway. I’ve spent hours tonight reading every page at this Thyroid site. Printed out many pages. You are a God-send. Thankyou, thankyou, thankyou. After what I’ve been through, it’s like the best assertiveness training ever. I’m fed up, not going to take it anymore, Hell no. No more Miss Nice thinking I have to please the doctor. Once you’re hit bottom, it’s very liberating, you just don’t give a crap anymore. I’ll say and do what I think I need to. After years of going from one psychiatrist to another, for mental problems like depression and Bipolar….gaining tons of weight on psych meds, till I was 200#s, still being so depressed I gave up on life, disgusted with myself, went through a divorce, my ex was tired of me being tired. Ignored my health, had enough of doctors, so by the time my breast cancer was found, the tumor was huge and spread to my lymph nodes. Didn’t care, thought dying was the answer. refused all chemo, radiation, etc…Tried natural remedies, found a doctor who tried me on T3- only, felt better, felt like I was hypomanic. Lost weight. Doctor suddenly died. Saw that I continued to have seasonal pattern of depression, which is common with Bipolar. Found another doctor and continued the T3 only and she put me on Iodine 50mg a day. (Lugol’s, 8 drops). Like always, started having problems in Fall, but worse. Bad rapid cycling. Took myself off Paxil, trying to stop the cycling, started back on Lithium. Having terrible anxiety and crying spells. Ruined a new relationship with all my worry. I don’t think I’ll ever hear from him again. Have lost 20 pounds in last 6 months, I’m 5-6 and down to 115#. having IBS, losing my hair. Worse is the weakness, can barely move my legs. Have spent most of past week in bed. Feel like I should be put in the hospital. So tired of hiding this and trying to pass for “normal”. So tired of feeling like a lazy slob. So sad that this isn’t who I am. After years of this, I actually think I’ve developed OCD, an anxiety to “tell” and make sure people understand. An anxiety to get reassurance. All from feeling so bad about myself. I don’t know, I wouldn’t mind jumping off a bridge, would be a relief. Just a few days ago, got some labs. My TG AB was high, like 50.5, but my T3 rev was low, 6.5, below normal range. I can’t find any info on low T3 rev. , only high. So, now to try and get treatment. I guess I’ve been swinging from hyper to hypo. I can’t believe how complex and complicated this all is. Why are so many people having thyroid trouble? All the women in my family. Now my 20 year old daughter is having symptoms. We live in northern IN, (great lakes region) Although, the mega doses of iodine seem to fuel my Hashimotos like gasoline on a fire.
    Jen

    • AQ quick reply Jen, to your terrible story of neglect.
      You’ve made such progress I have to admire you.
      Two things stand out worth early comment- [I hope you don’t mind not in depth]. Iodine is always tricky in thyroid cases. It’s not a hormone but a precursor mineral so will bias many stages of reaction in your body.
      Also your take on RevT3 is amiss- it should be a good, low ratio with T3 proper not high, which would be bad, generally.
      As you’re in the US there are many differences [I’m in the UK] in approach and treatment. If you can afford T3 is easy to get over there ,I think – but it a pretty powerful hormone.#
      I hope you’re getting regular blood tests and seeking better advice. Sorry your Dr. died- we just lost Gordon Skinner last weel at 71 yrs old and plagued by GMC checks on his work, now he’s had a fatal stroke.
      Missed by many here, though I never met him.
      Perhaps you’ll find our site of interest?…. Trev
      https://healthunlocked.com/thyroiduk/posts/130344355/dr-gordon-skinner-tributes

  14. I was very ill when I found the sites, doctors, endos, no help just a CFS diagnosis and left to rot. I am in the Uk and did get lots of support off the groups and managed to get so that I could sit up again then I crashed and burned due to taking T3 with low iron, but that wasn’t really their fault either. Drs should have tested at least that. I still cannot tolerate T3, believe I need the hydrocortisone at least at this point in my life and cannot get off it anyway.
    I do a partial T4 from the doctor and natural which without I have terrible athritic type pains. So far though I cannot walk and breathe. I keep putting on weight and have to lie down with weakness much of the time.
    I often feel there are no answers for me as I can only supplement and try different mixes. I feel for my family and my husband who cares for me 24/7.
    God made something very complex and we are in now way wise enough to get it so simplistic we can treat it ideally. That’s what makes me laugh about evolution, it would mean we are more stupid than a serious of accidental leaps. That we cannot even understand developmental adaptation stages from no life to life hehe. No this is amazingly intricate and everything has its place even rt3. Will be a long long time before they get a handle on it. Indeed science kills more than it cures, no cures (as in longer survival rate than 5 yrs) have been discovered in ….how long?
    I might try LDN, after all our immune system is very intelligent and I want it working for me rather than against me.

  15. This is a good page, as are all the pages here. Well thought out, researched, the science of why, etc… I can see why so many turn to these groups. After years of misdiagnosis and wrong treatment, then breast cancer…finally found a Doctor who got me on the right track. He suddenly died and have since seen 2 more doctors. The current one is quitting the practice, so here I go again looking. Our medical system sucks. You really have to know yourself, what to do. Don’t trust the doctors, the internet groups, or anyone….always research and learn for yourself.

  16. I too have been sick with thyroid problems for 3 years. .gained over 3 stone ..lost my job ..walking difficult as pains in legs so bad ..can’t think…big fat face and body. .look nothing like me anymore .lost all friends and family as they think I should be ok with levothyroxine doctor gave me .I’m now on t3 only as recommended by an Internet site ..no big changes to report in health and scared my supplier dries up ..Please how was I reduced to all this ? Why does nhs leave me to suffer ? Why does no one see how ill I am and what a miserable existence I have? Your telling us not to go online and seek help but where do we go ? 24 hour 7 days alone for 2 years ? Where do we go to find help we need? Nhs? Doctor. ? Nobody ? We have only the groups you speak of ? Where do you suggest I go?

  17. The problem isn’t Web forums or people taking risks with their advice which can happen- it’s that the medical establishment have closed their minds to what they’ve been doing for 40 years with Levo/Synthroid et al. If this mindset [or privelgedposition] was open to change then a better result would ensue.
    Hormones are tricky to work with, even GPs shy away due to this.
    it’s easy for them to do this in the current climate where people are indeed left to suffer.
    I’ve had some really good advice from the Yahoo group on RT3 having had a high read come back on recent blood test. The NHS refused to discuss this. What?
    I saw an article that said Asthma used be cured using Thyroid meds to the tune of 90% success rate.
    Not sure if this was thyroid patients only or the general population- but still highly worthy of note.
    I now have asthmatic symptons that won’t clear and GP’s foxed so far.
    Taking Lugols did stop it for a 10day period [on skin] but I stopped as BP lifted too much. On restart, the cough remains but easing slightly.
    Who knows- the old guys may have been right and knowledge now buried till some bright spark not connected with big Pharma picks it up. {I jest,sadly]
    There’s lot of good info out there- very few tyrants at large that I’ve come across on forums- but a lot of unhappy, sick patients not being cared for enough by ‘Primary health Carers’- Yeah!

  18. I am so relieved to have found this site. I am fully at step 10 (crash and burn) after enthusiastically adopting the popular thyroid protocol being promoted on various boards (step 7). Who could blame me? These “wonder drugs” we’re going to change my life. Now here I am, a year and a half – and many blood draws – later, and I am a shell of the person I once was. I have lost half my hair, which continues to fall out by the handfuls, and I’ve never been so exhausted in my entire life. This is despite a suppressed TSH and free T4 and T3 in the very high range. I am a mess. And because Wonder Drug supposedly works for everyone, I cannot find anyone else experiencing similar symptoms anywhere on the Internet. It is like any negative discussion of this drug has been erased. I have felt so alone in my struggle, but I have finally found a supportive place where any and all treatments are allowed to be discussed!! You have said what I have been feeling about some of the protocol Zealouts, although much more diplomatically. :)

  19. This happened to me. I was diagnosed hypothyroid by an integrative physician and put on desiccated thyroid. Found internet thyroid groups and struggled for the next 18 months getting my dosage right. As soon as I went over 2.5 grains my FT3 shot over range and RT3 as well. Dr reduce dosage and I became hypo again with FT4 in low end of range. I was then put on T3 and my iron and adrenals got the blame. Was put on iron supplements, and Cortef. The Cortef and T3 made me very ill, my cholesterol crashed and all my sex hormones. Adding desiccated thyroid back in the mix I felt better but still not great. Developed bad tachycardia and heart palps and was sent to a cardiologist for investigation. He pulled me off desiccated thyroid and on to brand name Levoxyl 112mcg, with a small dose of Cytomel. He said he’d seen tachycardia issues with desiccated. Well after the switch I am getting stronger every day and the brain fog is dissipating… I now have energy to clean my neglected home. Much happier! as I was making the switch I found and read your book and it all made perfect sense as related to my case.

    As for the thyroid groups? They just kept blaming different things as to why I wasn’t well on desiccated thyroid. I now realize that it has too much T3 and not enough T4 for MY needs. My hair is growing back with the extra T4 and I have more focus! I tried telling them this and my posts would get removed by the moderators so I left the groups. I don’t need them anymore, your book answered all my questions and I’m using it as treatment guidance. Things aren’t perfect yet but I finally feel like I’m not going around in circles anymore. BTW I had a miscarriage while on desiccated thyroid :( hopefully we will now be blessed with a rainbow thanks to the right treatment.

  20. I joined one of these groups last year because I suddenly became severely ill and needed advice. I can relate to the comments about feeling shut out. I am at that stage now. A lot of my posts are ignored because there are no simple answers to my questions, and I’ve given up on getting much useful advice from them. I notice when I check the forum topics that the posts that get the most answers are the ones about people not doing well on T4. When someone posts asking for advice about that, the regulars are falling over themselves to share their wisdom. Some people on these forums are rude, judgemental and egotistical and I often wonder how many sufferers have been hurt by taking the advice they have been given, or being too scared to ask for more advice because the last time they did they were belittled, mocked and dismissed. It’s all very sad.

  21. What groups are these? I am having trouble and desperately looking for some help. Would be great to know what ones to avoid and who really cares if we name names, if they are doing a discredit to the community. Helping someone avoid pitfalls if what the internet should be all about. We are all dealing with this horrible disease and need to support each other with correct info.

  22. Fab website, really informative.

    I got booted out of a forum for questioning the group think. And that group is probably the largest on the internet and tells people they are the recommended site by the NHS.

    How dare I question them and refer them to science based evidence :)

    It’s a shame as vulnerable sick people get taken in.
    Keep up the good work.

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