An editorial response from Thyroid Patient Activist Janie Bowthorpe

I am pleased to note that Mary Shomon of about.com,  who in her blog post on Thursday, April 22, 2010, has not only softened her wording about self-treatment by hypothyroid patients, but has also written expressively concerning surrounding issues. These are also issues which I presented in two blog posts earlier this week concerning the immense problem with doctors as expressed by patients, and self-treatment.

Good for Mary!

As witnessed by Sheila Turner’s excellent editorial towards those who criticize self-treatment, as well as angst expressed by many patients toward those who criticize,  self-treatment is an important issue and can’t be diluted down as simply “self-destructive” in our current medical climate.

The following are differences in how this is viewed, though, with one common thought:

  • Is self-treatment one  of the “most controversial” issues with thyroid patients? The answer is “only to those who make it so”. Far more troubling to thyroid patients is a medical establishment which worships a medication which has left millions undertreated, and which makes a pituitary hormone lab called the TSH as if it’s from God Almighty. Equally as troubling to patients are doctors whom they report as condescending, close-minded, robotic, and/or ignorant about issues that keep thyroid patients sick–low ferritin, adrenal fatigue, and more. Self-treatment is only the symptom of a much larger, more controversial problem.
  • Does self-treatment have “obvious drawbacks” for thyroid patients who feel forced to do it? The answer is “yes”, but no different and probably far less than the “obvious drawbacks” patients face with clueless doctors.  The comments on my blog posts are bloated with patients who have been left sick, or made sicker, by one doctor, after another doctor, after one more.  It’s not a pretty picture.
  • Is there a “risk of undertreatment” for thyroid patients who self-treat? Yes, but probably far less  than the huge number of patients who report being left “undertreated” by doctors who are blind to the problems of T4, or doctors who remain clueless about the inadequacy of treating by the TSH.
  • Is the “greatest concern” about self-treatment the problem of being “over-medicated”? You betcha. But in the vast majority of these unfortunate cases with patients who choose to self-treat, the problem is undiagnosed or undertreated low cortisol and/or low ferritin, which results in thyroid hormones pooling in the blood and creating hyper-like symptoms.  This is a risk for self-treatment.
  • Have “dozens of thyroid patients” ended up in emergency rooms due to over-medication? “Dozens” is speculation.  It may be more realistic to state that “some”, yes, have stated this unfortunate outcome when they made the choice.  But research and comment all over the internet shows anyone that hundreds of thousands of all patients can end up in the emergency room due to poor doctoral decisions, or bad reactions to pharmaceutical medications which doctors love to prescribe. Ending up in an emergency room is not solely connected to self-treatment.
  • Do “patients face many major obstacles that prevent them from getting accurate and effective thyroid diagnosis and treatment?” Yes! That is where Mary is in agreement with me with her six excellent  points, including the tragic situation in the UK. And here are 10 reasons patients are frustrated, angry and sick.
  • Has one negative journal article about someone who self-treated “resulted in desiccated thyroid  getting greater scrutiny by the FDA?” The answer can easily be:  no worse than the body of patients who were made fearful that the FDA was banning desiccated thyroid, and who followed a strong campaign to contact the FDA about desiccated thyroid. I was also personally told by two pharmaceutical representatives that this action to contact the FDA made the pharms very uncomfortable and put too much attention on desiccated thyroid. Time will tell, but it’s not helpful to blame anything.
  • Does “actively promoting self-medication” with natural desiccated thyroid “work against thyroid patient interests”. The answer to this loaded question resides in who you ask. Whether “actively promoted” or simply “read about”, there seems to be a body of patients who report that finding out about desiccated thyroid, and feeling forced to self-treat because of not finding any doctor to help them, was one of the best decisions they ever made.

And to the last comment above, and since there have been “implications”, I want to underscore (and ad nauseum) that the patient-to-patient Stop the Thyroid Madness was not created as a self-treatment site, nor does it “actively promote” it.  STTM is a site with a goal to educate patients who can, in turn, take that information into their doctors offices and push for change. And it’s been working, one doctor at a time, as witnessed by patients who report those doctors on patient groups, and by emails I get from some of those doctors.

But it’s also clear that those who self-medicate may be using STTM, as well as many other websites and books out there by doctors, advocates and non-professionals alike, to help them. So at least there is education out there to help those who choose this, even if none was created for that purpose.

Summary

There are important differences in opinion, and much more to the story as I outlined above.

But the bottom line is this: for up to 60 years, hundreds of millions of thyroid patients around the world have been subjected to

  1. a medication called thyroxine which has left a heap of lingering hypothyroid symptoms,
  2. a new debilitating condition like adrenal fatigue,
  3. a lab test (TSH) which has delayed diagnosis for years or kept patients undertreated, and
  4. too many doctors who aren’t up to speed about most any of this, and have left patients frustrated, angry and still sick.

And all the above is a far worse scenario which only pushes some patients to self-treat as a side-effect. But if  you aren’t totally wiped out financially and emotionally in trying to find an informed doc, two suggestions: http://www.stopthethyroidmadness.com/how-to-find-a-good-doc as well as posting your city/state in the subject line of patient groups here: http://www.stopthethyroidmadness.com/talk-to-others

P.S. Please note that you will never see this blog, or this website, knowingly allow non-professional,  negative, nasty, false, abusive and/or profound slander about a colleague, as has been done elsewhere. 🙁


10 Responses to “An editorial response from Thyroid Patient Activist Janie Bowthorpe”

  1. Kate

    Having the inside track on how pharmaceutical companies work from a family member serving as an executive for years, I disagree that the Save the Natural Thyroid campaign and the actions of patients in contacting the FDA “scared away” pharmaceutical companies or raised the ire of the FDA. That isn’t how the companies work…it is a much more political process and about $$ and freezing out competition. There is power in numbers. The actions of the patients only helped to stave off much worse action by the FDA – which may yet happen. That debacle isn’t over.

    That said, on the other matters I do agree with Janie and believe Mary, though well intentioned, is way off base. I find it insulting to say that a doctor knows more about my body and is better able to determine treatment for me when I have lived with this my whole life. I am constantly educating even the best and brightest of doctors. For thousands of years before there was even such a thing as a medical profession, people treated themselves naturally with the medicine God gave us. The rationale could be extended to even the simplest things, like for example, should we insist a person not treat a small skin cut with a Band-Aid because a doctor knows better and it could get infected?

    Mary also does not address the issues of access and poverty. The reality is, most patients do not have access to a good doctor nor the financial means to manage the disease with doctors appointments, not getting care, going to new doctors, and the merry-go-round continues. It is almost a discriminatory statement to say there is something wrong with self treating when you have no other options. If those chastising self treatment want to spend their days finding good doctors and paying for the medical costs of those who aren’t as advantageous, then fine. Until then, they really should shut up.

    The problem isn’t the patient or self treatment, it is the lack of real care for not only thyroid and adrenal patients, but all patients in general regardless of their medical condition.

    Additionally, to chastise self treatment seems more like a CYA for legal liability, but the reality is, many patients would be dead because of negligence on the part of their doctors and the medical establishment had it not been for sites like Stop The Thyroid Madness and patient-to-patient care.

    I also agree with Janie that the only “controversy” on this issue, is the people and groups that create on out of self interest (i.e. doctors that want to control our bodies and often harming us rather than giving us good care.)

    Doctors are NOT Gods, they are not all-knowing, and they are often more harmful than helpful. Telling a patient they are better off with that than taking their lives into their own hands is ridiculous and irresponsible. Using fear tactics is disgusting.

    Compare the number of people dead or harmed by self treatment of their thyroid or adrenal disease to those harmed by lack of proper care or inadequate care by the medical establishment. Just because they have the money and the power to stave off lawsuits from those whose lives have been destroyed by lack of diagnosis and proper treatment, doesn’t mean they aren’t morally liable.

    Keep up the good work, Janie, addressing these important issues on behalf of patients. There was a time when people insisted the earth was flat and persecuted anyone who disagreed. Enlightenment often comes slowly to many.

    (From Janie: For the record, note that my comment referred to two pharm reps within two different companies who stated to me they were “uncomfortable” with the push made last year to contact the FDA, feeling it shined too much attention in a time when they are walking a fine line. This was stated to counter the implication that one journal article on the problem of self-treatment was the only influence on the FDA. Thanks for the rest of your informative comment, Kate!)

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  2. Laura

    Please explain how one goes about self treating if all thyroid meds are by prescription.
    Thanks…

    (From Janie: there are some over-the-counter products, as one example, which though weaker, patients feel forced to take when they have lost hope in finding any doctor to help them)

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  3. Enrique

    I’m an ‘expert’ on my own body and I’m self-treating.

    Thousands of people die at the hands of doctors every year. For example, newly diagnosed cancer patients live longer if they refuse to do chemotherapy or radiation which is what doctors always recommend as soon as the diagnosis is made. I know people who were diagnosed and given 6 months to live and are still alive 5 years later because they refused to do the chemo treatments which are worse than the cancer itself!

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  4. Stephanie Sullivan

    I’m a long-time thyroid patient who’s been through the mill of misdiagnosis, undertreatment and mistreatment at the hands of a long line of internists and endocrinologists since 1983. Nobody ever bothered to test me for Hashimoto’s all these years – until I read Janie’s book and asked for the test. Guess what, I have Hashimoto’s. Nobody ever suggested that there was a better drug for treating my hypothyroid problems (other than Synthroid) until I read about it and asked.

    When Armour’s formerly efficacious formula went off the market last year, I was consigned to use the new formulation or switch to Synthroid (never happen again!!). Like others, I quickly found myself with all my hypothyroid symptoms back. I even developed a new nodule.

    I see a doctor who is completely sympathetic to my need for natural dessicated thyroid – but she is also a TSH worshipper. So I have to read up on my thyroid data each visit and remind her to test me for Free T3 and Free T4, ferritin and etc. I demanded compounded thyroid, and thank goodness for our local compounding pharmacy! I’m now nearly fully optimized, but only because I still self treat. Why?

    Because as soon as my TSH approaches “1.0” she holds that dosage. I order another form of natural dessicated porcine thyroid and I take those capsules several times a week as a supplement, closely monitoring my pulse, etc. I’m pretty certain I know more than my physician about my body and about thyroid treatment at this point. We get along well and she means well, but I know that I still have the freedom to take my health into my own hands, where it belongs. I’ve taken the time to educate myself thoroughly on thyroid disease. I suggest all thyroid patients do the same. Thank God for Janie (and Mary and the rest) who tirelessly work as our advocates! Keep up the good work, ladies, we all need you!

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  5. Nikki

    I do feel the self medicating topic is sensitive and choice. We must agree, all thyroid patients are not the same. We must agree that, not all thyroid patients need to self treat. We must agree that, each decision we face in life must be made at our own descretion and expense. Also we must agree that any advice given – regardless where you read or get it from shouldn’t be acted on, just for the sake of someone’s suggestions on what could work for you.

    The whole picture in advocanting is learning. I believe both Janie, Mary and a host of other activists have done their homework entirely and could ring circles around doctors on thyroid care and treatment. In fact, I am sure some, have been told by real- “superior” professionals that they understand thyroid more than some practicing/licensed professionals. That reward or achievement is everything to someone that recieved it after there own personal nightmare. There is a feeling, a miracle took place and a personal proundness like no other, after saving your own life. Being told by a doctor, the obsessive learning was all worth it to live.

    Another part of being a “spot-light” advocate in my opinion, is not ONLY did they overcome their thyroid nightmare but now are – compelled enough to share with others. A true heart of gold or calling for human survival and wellness. I believe Janie and others are very special people and we should thank God they take the time to reach out to thousands of patients looking for help. Not only do these people “learn” thyroid but “live” thyroid. Also all the other components like: government and FDA guidelines, building user friendly directories of doctors so quality care is easily available, and supplements and quality lifestyle skills to help us remain strong when wellness returns. It takes alot of time, work and learning involved when this path has been chosen as resource for others. In a nut shell this role takes extreme intelligence, kindness, compassion, knowledge and articulate pursuasive skills to keep plugging along daily.

    For the average thyroid patient, most will not be driven to this degree of learning. They desperately log on the internet to search wildly for some information on WHY they feel so terrible. They find STTM or about.com or others, and read things their doctors aren’t telling them. Now they are ticked off(for better words)and angry their health has been sadly ignored. I think there is a fear/panic now in place for many of them, so they are now only looking to the internet for information and trust is now broken with their care. They read about increases or self medicating and “think” that is NOW what THEY need but are they really informed now about their own personal situation?

    I am famous for stating this senerio to many thyroid patients looking for good care after being “wronged” and thinking about self medicating to relieve them of their illness. Truely its a scarey thing to look at and hope others take this into consideration when they “chose” to do this treatment “alone.”

    We all know, anything can happen in our lives. “What if”.. you were not able to advocate for yourself in a medical crises? – You couldn’t speak or move. In a coma from an accident or another thing that took place. You are illegally getting thyroid medication or supplementing somehow without your doctor really knowing that helps you maintain a certain wellness all on your own. Now you are in an emergency room with a strange doctor. He could be an idiot TSH/only T4 Synthroid doctor in most cases too. He calls your “real” doctor and gets the run down of YOU. Now, you’re in HIS hands. Will you survive? Will be do HIS own treatment plan for you? My treatment is not a common practice and I feel my best now, since my own personal thyroid hell and ablation. I decided after getting well to forgive the arse’s that kept me so sick. Studied thyroid and still do and also took the time to find a doctor who’s on my team after I was self medicating for so long. Was cost a factor? Yes it was. In the beginning it was large but now even LESS than when I was doing things all alone. My nitch of saving money was learning first, then seeking someone that also learned to. I now pay pennies a month to stay optimal all year long.

    The medical world we live in is very evil and mistakes are made everyday to patients. Always cover your bases with your care and make sure you don’t leave any loop holes like self medicating. The pharmacutical companies and hospitols are bigger than any of us whether popular advocants or just patients looking for good care and are corrupt in everything. Don’t fall ignorant to them and just think you can do something to yourself and expect it will be done if you can’t advocate for yourself! It won’t happen. I guarantee it. And they will cover up anything if something occurs. Self medicating covers THEM when they do wrong and you become the ignorant dead invidual that risked your own life without covering your tracks. I know I will not live in a medical crises if that happens, or at least I will be very hypo coma in a short time due to my treatment choices now. Are you prepared to accept that as a possibility if it happens to you? I have chosen – smartly – to cover my tracks as best as I can and have a provider with me – that is “off the charts” in a matter of speaking, then what traditional thyroid treatment is. My hope is “if” something happens will she be there? but no one knows for sure if that will be either. And will THEY listen to her if she is there? Does she have rights to that hospitol? Lots of decisions for all of us to consider when we take things into our own hands.

    If you can’t find a doctor who agrees with what you read online and you take things into your own hands, do not expect to turn back and play the blame game when something goes wrong if that happens. Its a choice and road you took and probably for good reason. The only thing to really consider first before saying you “can’t” find a doctor , can’t find this or that to really help you is did you look hard enough in case something happens before making that choice? – If you can answer yes whole heartedly with all the resources out there for you then I wish you the best and hope nothing effects those choices you made down the road.

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  6. Nikki

    One thing to add. Someone said above there’s power in numbers. Lets all be there for eachother. This is a terrible disease to even have let alone sift through all the information and wrongness inflicted on each one of us. We are bigger as one not groups with secrutinized opinions.

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  7. Nikki

    I read Laura’s comment above and think how scarey her question really is.

    Reply
  8. Josie Strother

    Does anyone know anything about Pathroid? My DO wants me to try a low dose of this. She is having it compounded.
    I had the labs suggested on this website. The free T3 and T4 plus the others came back normal. TSH was 1.3.
    I only have a few of the symptoms, like weight gain that wont budge no matter what, I am 51yrs, menopausal for 2 yrs. Dry hair and brittle nails, sometimes fatigued.
    Anyway she is going to test me for food allergies along with a hormone test…She believes in watching the symptoms instead of ruthlessly following the labs! Feel fortunate to have found her.
    Josie

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  9. LM

    The doctors we see are rediculous at times. In what other field do you not need to update or keep learning?

    Before the last attempt in ditch a doctor and moving on to another – try to educate them, if you can. This will piss them off if they are already, but it leaves an impression, maybe they will re-think for the next patient. And some that want know more – well I had a new GP that knew you need to look at frees, but was still kind of cluless, she asked what Armour was, I told here, and eventually about ERFA. On the other hand I had an older GP argue that Armour was from Bovine (horse) not pigs. He was pig headed to say the least.

    They need to learn, maybe from us!

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  10. Vee

    My treatment in the U.S. was ***terrible.*** After decades of well-managed thyroid disease in other countries I suffered debilitating and unexplained onset of pain, paresthesia, fibromyalgia, anemia, asthma, memory issues, coordination and stumbling problems, as well as escalating food allergies/sensitivities after pharmacies and doctors in the U.S. bounced me between multiple forms of thyroid medication. Allergists and eye doctors dismissed symptoms (later clearly attributable to Hashimoto’s–which I was not tested for until nearly 25 years after a hypothyroid diagnosis). I was criticized by an endocrinologist for reading up on the thyroid–even at the medical school at my own university where I was a doctoral student. I now make my own decisions. I’ve done extensive research in food and best practices–and I am healthy. Appropriate nutrition and good care, as well as medication that does not cause intolerance and allergies, make living with this thing quite doable. I wish I had not lost half my thyroid gland due to California doctors’ and pharmacists’ “care” — for which contributing factors over the years ranged from problematic dyes, generics, drug recalls, excipients, and changing between medications without consent. Major fails to Levoxyl and terrible, complicit federal and state regulation. Patients should be aware there is changing legislation on generics (state and supreme court) and that companies of the scale of Goldman Sachs invest in Walgreens and have been architecting patients’ unwitting moves towards generics. That could be fine for some — on some medications and in some cases — but it’s disastrous for others. Please be advised. Doctors and pharmacists, get patients on board with their treatment. It’s called consent: it should be non-negotiable.

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