Today’s morning newspaper was repugnant. The article was titled Doctors not fans of Googling to find ailments. Oh really?? Why are we not surprised! Yes, the article began with the idea that many of us are googling our unexplained symptoms before heading to the doctor and they “aren’t thrilled.”

It then stated:

In fact, doctors used words like “nightmare,” “annoying”, “irritating” and “frustrating” when talking about the burden of dealing with patients who bring in stacks of Internet-based health information (and misinformation) according to a recent study in the Journal of Medical Internet Research.”

It continues with doctors seeing it “as an unwelcome intrusion” and they “resent the new interpretive role they have been put in.”

Does that trouble you, the thyroid patient, as it does me?? In fact, I find it pompous and nauseating. Let’s turn that article around to represent the REAL truth:

Thyroid patients have found it to be a “nightmare” when doctors overtly and unanimously proclaim us “normal” because of dubious lab results (TSH and T4) in the face of obvious and ongoing hypothyroid symptoms.

Thyroid patients find it “annoying” that doctors ignore the continuing symptoms and instead, push anti-depressants, statins, anti-anxiety or pain meds on the patient rather than become educated about the role of a low free T3.

Thyroid patients find it “irritating” that doctors, especially Endocrinologists, blindly conclude that Synthroid, Levoxyl and any other T4-only treatment is the best treatment for hypothyroid patients…when it has clearly failed us for decades.

Thyroid patients find it “frustrating” that doctors don’t recognize the common occurrence of adrenal fatigue with hypothyroid, and their failure in understanding how to treat it.

And thyroid patients “aren’t thrilled” that doctors still seem to see themselves as demi-gods of their patients health, when in fact, the relationship should be a PARTNERSHIP. You do NOT live in our bodies.

So dear doctor, instead of bemoaning our use of the internet, which in fact saved ME from your incompetence as it’s doing millions of others, rejoice that your patients have had the balls and inclination to FIND answers via the internet. Because those answers are here. And the answers are not just for us, but for those of you who are open-minded and mature enough to LEARN from the internet. Because the internet is ultimately US.


  • Want to keep track of these ‘fringe web­site’ blog posts? ;-) Curious what’s on radi­cal Janie’s mind? Use the notification on the lower left of the links, called a Newsletter, or an RSS Feed.
  • Keep informed of each live Thyroid Patient Community Call on Talkshoe by signing up as a follower.
  • The extre­mely hip and sophis­ti­ca­ted STTM t-shirts are half price! Great BUMPER STICKERS, too. Spread the word--YOU may make a difference in someone’s life.
  • Check out the patient-to-patient book with even more detail (and which doctors seem to respect more than websites).
  • Need options for thy­roid treat­ment during the current shor­ta­ges due to demand being grea­ter than supply? Go here.

33 Responses to “Doctors don’t like us using the internet?? Tough!”

  1. Mary Lou said:

    Jan 24, 07 at 6:40 am

    YOU GO GIRL!!!!!! What a clever twist on their own words!!!! Love it!!!!

  2. Ginny said:

    Jan 24, 07 at 8:47 am

    I hope you write a letter to the editor explaining our side of things.

  3. nutralady2001 said:

    Jan 25, 07 at 2:45 am

    Hahahahahaha, I’m rolling on the floor here……well the internet saved a doctor from having to do an autopsy on me…**rolls eyes**……….. how arrogant!!

  4. Dee Buckel said:

    Jan 25, 07 at 4:22 pm

    We need to present a common front in this battle. How do you get any doctor to understand our desperation? There are several doctors posting very supportive information on the internet. I was diagnosed clinicaly before the use of the TSH put on Armour and still didn`t really have all the story. Took my thyroid for years with food and vitamins. This is only one example of necessary information I received from the internet. I guess you just have to stick to your guns and look out for yourself= no one else will. Thank you Janie for fighting this battle for us.

  5. Vicky Gallas said:

    Jan 28, 07 at 2:18 pm

    Janie,

    I just found your website and realized that I have not been treated correctly for my hypothyroidism at least for 10 years. I was diagnosed back in 1987 after an employment physical – my symptoms were truly obvious back then: very swollen neck; hair brittle and falling out, excessive weight gain for no reason; puffy/swollen face and more. After a doctor experimenting with the dose for 6 to 8 months I was put on Synthroid 150 mcg, and have been on that dosage ever since. Back then I was prescribed a 1 year prescription at a time. By 2000, still on the same dose, doctors wanted tests every 3 to 6 months, but only the TSH. For the last 3 years I have complained of various symptoms but the doctor stated my TSH level was in the correct range – I believe it was around 5.? . He said that if anything I’m on too much. Because of the termination of a program for low income patients in my area, I cannot go to this doctor again. I just ran out of Synthroid three days ago, have no money for lab tests and a doctor visit so I went to the ER. I only wanted a 1 month refill as I will have the necessary money in a few weeks. The ER doctor refused to give me a refill.

    I have been a slave to the thyroid tests to get the prescription that was never correct anyway for 19 years now. I have no health insurance, so often the money was a problem. It is in my thoughts that I want to find a natural substitute – I do have some symptoms now, but have off and on for 19 years anyway. I am going to stop being a slave to the lab and doctor crap for a while and look for a natural remedy to this problem at a health food store and soon through a homeopathic doctor.

    I have wanted to do that for a long time but I read that I might have no problems, or I might go into a coma as a worst case scenario. Anyway, I’ve had it with the system in place, so I figure it’s time to find out. Your website is much appreciated – I knew I had symptoms throughout but was told I was wrong. Thank you!

    Regards,

    Vicky

  6. warren bowthorpe said:

    Jan 29, 07 at 12:00 pm

    hi janie i just thought i would stop and take a minute to check this out. it’s pretty cool and im not just saying this because im you’re grandson but i think alot of the things you say here are really inspiring even though i dont have any thyroid problems. love you,tell grandpadad i said hi and i love him. (Hi Warren. I’m approving your comment because I think it will make a lot of folks smile. And if you do get a thyroid problem when you grow up, you’ll know right where to come. :wink: Love ya. GrandmaJanie)

  7. Valerie said:

    Jan 29, 07 at 12:30 pm

    WOW and I thought it was just MY doctors that hated My knowledge! LOL What a crock of crap these guys are pushing on the public! Dare ya to do a rebuttal editorial post to them!

  8. Perry said:

    Jan 29, 07 at 1:25 pm

    You can tell the doctors are getting nervous. I think they hear us lighting the torches and sharpening the pitchforks.

    Remember, thyroid patients and anyone else that wants medical care that makes you well… you may need to bring your Attitude Adjuster to your doctor’s appointments from now on.

    My favorite brand is “Louisville Slugger”.

  9. Ginger Haskins said:

    Feb 01, 07 at 3:33 pm

    The bottom line is really this:

    If the doctors were doing their jobs right, we’d all be happy and well and wouldn’t be on the Internet looking for better answers!

  10. Kiki said:

    Feb 01, 07 at 5:01 pm

    “Journal of Medical Internet Research”

    Feh. They are so frustrated with informed patients that they have to start publishing a journal? What other articles are in here? How To Ignore Clinical Signs Of Illness? Mastering The “You Have Two Heads” Stare For Particularly Troublesome Patients? Don’t Treat – Keep ‘Em Coming Back For More? Lie To Your Patients, It’s Okay? Co-pay Then Refer Them Away?

    I could go on. And on. And on. But everyone here has already seen enough pompous ass. Speaking of which…

    I should subscribe to _this_ one. I am running out of toilet paper ;)

  11. Marge E said:

    Feb 02, 07 at 6:16 pm

    This has gotten so bad that I even had a problem with a VETERINARIAN. I said to the vet that I’d read dogs of certain breeds (including my own dog’s breed) had reports of adverse reactions to a drug they were giving him. Her reply? No, not “we will monitor him very closely”, nor “perhaps we can change him to another medication”, not even “I will look into that”. She very dismissively said “you can find anything you want on the Internet”. Yeah, Dr. Turd-Face, you CAN find anything on the internet…like the TRUTH.

  12. Paul said:

    Feb 04, 07 at 6:18 pm

    Amen, Janie. Amen.

    When I go to a restaurant, do I have to know how to cook better than the chef? NO. When I go to a concert, do I have to know how to sing better than the singer? NO. But when I go to a doctor, do I have to know more about health and healing than the doctor?

    Nine times out of ten, hell yes.

  13. floprincess said:

    Feb 05, 07 at 5:54 pm

    all i can say is without this website i would of NEVER been diagnosed with a thyroid issue. thank you janie and crew!!!!!

  14. Kathleen said:

    Feb 06, 07 at 6:06 am

    BRILLIANT DEAR JANIE!

  15. sean said:

    Feb 06, 07 at 2:39 pm

    I have been “chronically fatigued” or “atypically depressed” or “have had a fear of getting well due to my non-giggly personality” for 17 years. (Thank you, learned doctors!)

    All these diagnoses and more have described the mystery condition that has kept me only half alive during the prime of my life.(from age 20 to 37)

    Without the internet to give me leads toward someone who could tell me what was wrong with my body and how to fix it, I probably wouldn’t be here today.

    Thank God for you and others for making this information available to the public. I have a very low metabolism and was feeling even more fatigued, headachy, and weak when taking a trial of T3 (and despaired). Now I see that adrenal fatigue can be caused by hypothyroidism and that cortisol is often needed in conjunction with T3…WOW!!!

    Your site is probably saving me from severe Annoyance, Irritation, Frustration, and the Nightmare of no hope or help for a solution.
    Thank you!!!

  16. Redhen said:

    Feb 10, 07 at 3:29 am

    Great job, Janie! Another horrible thing that U.S. doctors do to thyroid patients is to insist that people with Graves’ Disease (hyperthyroidism caused by an autoimmune response) be treated with Radioactive Iodine. This usually causes patients to become extremely hypothyroid and exacerbates the autoimmune response.

    The doctors (most) will then wash their hands of the patient, claiming that the RAI had nothing to do with all the negative side effects. On top of that, they won’t treat the hypothyroidism adequately.

    There are two other choices for treating Graves’: antithyroid drugs and thyroidectomy. If you have Graves’, check out http://atomicwomen.org

    Red

  17. Dwayne said:

    Feb 11, 07 at 6:39 pm

    Most people know basic remedies when it comes to their health. We truly need doctors to get to the root of most healthcare problems such as thyroid disease. Yet, since I have become hypothyroid- I have NO respect for doctors anymore. People are better off going to a holisic MD. I am still suffering due to years of uneducated doctors who don’t really know anything. It’s evident with the millions of people who are suffering and never truly get better.

  18. Andrea said:

    Feb 15, 07 at 8:22 am

    Great blog! I went to the doctor yesterday and asked for several tests recommended at “Stop the Thyroid Madness”. My doctor was visably and undeniably angry with my Googled knowledge. Knowledge is power! He ordered the tests. Thank-you for sharing what you have learned!

    The internet has either created a new generation of hypochondriacs, or a new generation of people who have had enough, and are taking control of their own health and healthcare needs… I believe it is, more often than not, the latter.

  19. nutralady2001 said:

    Feb 20, 07 at 7:26 pm

    I know I’ve already commented but read number 49 of “Give Me A Break”…………this was my doctor’s reaction to things I find on the internet………she’s now having a fit because my TSH is 0.01 and my FT3 is 5.9, 0.5 over the upper range of 5.4

  20. David Johnson said:

    Feb 22, 07 at 4:47 pm

    I self-diagnosed my gallstones, thyroid dysfunction, mercury poisoning, and about five other conditions, and had to fight the doctor’s all the way on every one. Poor doctors. Now they have me coming in with a stack of scholarly papers my wife pulled from PubMed (she’s a Molecular Biologist) and it’s like an interrogation. “So, would be doctor, do you know what the MELISA test is and that it has proven mercury filings cause MS?”. No, well GO READ THE PAPERS. Nine times out of ten they won’t even read scholarly publications. Bottom line, most of them are lazy and got into medicine for the money, not the healing. Now it’s not even the right place to be to get rich, so they’re really hating it!

  21. rkalexander1 said:

    Mar 07, 07 at 1:59 pm

    Amen! These doctors need to pull their heads out of the box, and by box I mean ASS!

  22. X said:

    Mar 10, 07 at 7:33 am

    Oh my god, THANK YOU. I love this website, and this article is the most validating thing I have experienced in a long time.

    I have been there, been there, been there, but you gave me a nice, hearty laugh. I feel friendship and camaraderie with and for anyone who’s gone through this. I feel stronger and more hopeful about attaining my best health and wellbeing because I found your website. Thank you from the heart.

  23. april said:

    Mar 20, 07 at 9:57 pm

    If I hadnt spent the money and bought a computer nearly 3 years ago, it absolutely scares me to think where I’d be today. No dr, I repeat NO DOCTOR ever took the time to discuss any of the information I learned on this website. I am on Armour (since November ‘06). I also learned on STTM that, based on my symptoms and home tests that I did, that I had adrenal fatigue so I took hydrocortisone for an extended period with wonderful results. I am in the process of weaning off of it. I also learned that I had a low b12 (last summer) but because it was in the normal range dr’s refused to treat me with the injections (which i need because I cant absorb the tablets). I took matters in my own hands and ordered some, started last night and already I’m noticing positive results. I took T4 for a little over a year. I did feel better but for a short while and just never felt right on it. In the end I was ill to the point of missing work, and antibodies of 773! It finally took an ENT dr to diagnose me with Hashimoto’s Disease and my pcp to give me a prescription for Armour after seeing that I was still suffering. Within 2 days, my aches were gone, my brain fog cleared and I came to life again!! I have lost 30-35 lbs and the puzzle pieces of my life are slowly coming together.

    Janie, words cant express my gratitude for your hard work in creating this wonderful website and I cannot say it enough. Thank you a million times!!

  24. Jackie Bushell said:

    Mar 24, 07 at 9:30 am

    Janie

    Great response to the newspaper article – and great website! Your site has been so helpful to me in finding out more about my hypothyroidism and all the issues over tests and treatments. Thank you so much!

  25. Cathy Clark said:

    Mar 24, 07 at 5:27 pm

    Well, after firing several butt heads (idiot doctors) I finally found a GOOD one! Most doctors today are basically drug pushers dressed up and not on street corners. But that is what they are. The medical profession needs to wake up and get free of the pharmaceutical industry! I was on $ynthcrap for years and has AD’s pushed on me; all I needed was Armour, adrenal support and a little iodine – my first doctor never even tested me for hashi’s, but told me my thyroid wasn’t functioning and put me on levoxyl and gave AD’s for my depression. He was so fired. My new doc respects MY knowledge and encourages me to know MORE. For the first time in my entire life I have the hope of being healthy at some point. I am not there yet, but if I had been diagnosed properly as an infant, I could possibly even have had a normal life. I get really upset when I think of all the years I have lost to this disease when it wasn’t necessary!

  26. Jay said:

    Mar 27, 07 at 12:19 pm

    I love this site. Just wondering why its all female related information. I had my thyroid nuked almost 4 years ago and have been on a continual increase in synthroid dosage ever since. I finally know what to call my brain fog. It is accompanied by exhaustion and depression that is ruining my life. (Note from Janie: most of the site is for either sex, not just females.)

  27. Gina said:

    Apr 03, 07 at 6:45 am

    These doctors that are so annoyed by our research are obviously very afraid that we might find out that they are not as clever as their PHDs suggest. They really need to kick that God Complex and admit that they don’t know it all. They should be happy that we are endeavoring to understand our own bodies. –I would never say that just because I get depressed and suffer emotionally that it’s automatically all because of my thyroid. But having actually been diagnosed with Thyroid Disease, I do not think it is unreasonable to want to explore just how much it has to do with my other health issues. Any doctor who truly cares about his patient should want a real explanation and not just to offer us a happy little drug cocktail to make us forget so they can get all those great freebies from pharmaceutical companies. –I hope I’m not being too redundant here, I am currently suffering from the illness that’s “all in my head” and am unfortunately too tired to read every last comment, I’m sorry. –Thank you for this information, this website is very eye-opening and helpful!!

  28. kawana said:

    Apr 06, 07 at 9:45 pm

    Since finding this site I have read almost every page and link. I was diagnosed with thyroid goiter at age 11 during a sports physical. Back then there was not much information to folks about this disease. No one in my family had it, and it truly seemed a mystery. I struggled with it until I was 20. That is when I was finally put on medication. Synthroid? Who would have guessed it?! At the age of 22 I lost the ability to walk.

    I had just gotten the internet. I started to read. I met Mary Shoman before she became all that popular. I started to learn and began questioning my doctor. No one would help. I told my husband about all the information I had found and he apologized to me that for years he believed what the doctor had said about getting me mental help. My husband took my synthroid out of the cabinet, looked at me, and said, “we are either going to cure you or kill you, I can not stand knowing that you are in real pain, afterall.” He doubled my meds, I was on such a low dose that I could have taken anything with more potency. So we tripled my meds. Four days later I was walking.

    I went back to my doctor in good spirits. We had a meaningful conversation and I told him I would not take anymore synthroid. I want armour plain and simple and I will take my chances. Its my body and I deserve the right to take care of as I see fit as well. He consented. I have been on Armour Thyroid ever since. I am 32.

    Bottom line. My doctor is not perfect, He still struggles withs the senseless tsh and I have to continually debate with him over dosage. I usually get my way. My life has been the better for it.

    For those out there with doctors like mine, next time you have a visit, Thank him/her. Genuinely thank them. Tell them how much you appreciate hearing their side of this and working with you.

    PS. My father was diagnosed as having Hashimoto’s two years ago. I also was diagnosed with Hashimoto’s at the age of 22. My aunt last year under went treatment for lung cancer and had to have two of her ribs removed just after being diagnosed with graves disease. Another cousin was diagnosed last year with graves disease and my mom is currently being treated for mild hypothyroisim. I’m still working on them. Imagine that.

  29. Alise said:

    May 01, 07 at 5:01 am

    My grandmother had a huge goiter in the middle of her neck and she was ‘never’ diagnosed. She died in 1968 of a massive heart attack probably brought on by her ‘undiagnosed Hashimoto’s’. My mother had horrible symptoms and was never treated due to doctors dependent on that stupid TSH test.

    Now I am having symptoms: my skin is so dry I cannot do laundry without the dry sheet ’sticking’ to my hand as if it were velcro, I have gained FIFTY pounds while dieting and exercising. I have had a ‘false positive’ pap smear due to B-12 deficiency but the doctors have spent more time telling me to diet and lose weight than to even think of a thyroid problem. They also seem to think I am obsessive and compulsive due to the fact that I have pulled information off the web to ‘back up my case’. They very often get angry with me because I question their results. I am now working on my fifth doctor… I will not give up. My sister has been diagnosed with ‘underactive’ thyroid…

  30. Jennifer Stephens said:

    May 26, 07 at 11:29 am

    Well it’s great to know that other people are experiencing the same problems with their doctors.

    I have all the syptoms of hypothyroidism but my test results come back normal and my doctor just says ‘no I won’t treat you or try you on a low dose to see if that works’.

    My doctor even but on my records ‘there is no further reason to continue tests’.

    I think I’ll try another doctor.

  31. ibeji said:

    Sep 05, 07 at 2:26 am

    I recently got a bit of a revenge on this when I went to see my GP a couple of days ago.

    I asked him about Ord’s thyroiditis (i.e., the atrophic form) and Hashimoto’s disease (the hypertrophic form), whether they were actually two distinct illnesses or just different phases of the same syndrome, and he said he was surprised to see how much I knew about the thyroid, and that he hadn’t known about Ord at all.

    He asked me then where I had learned all this from and I dryly answered: From the Internet!

    And I added that he just needed to look up the name on Wikipedia to see it all explained.

    HA! :-)

  32. Rosie Crowe said:

    Jun 26, 08 at 8:14 am

    I wanted to thank Janie from the bottom of my heart for this awesome site that has given me my life back!

  33. Dwayne said:

    Aug 17, 09 at 9:18 am

    You do a lot of great work janine. It’s amazing that so many doctors remain so uneducated about thyroid disease. They must not cover this at all in medical school- I had a doctor I got rid of because he couldn’t even figure out the correct conversions even though switching from Synthroid to Armour charts are very wrong. He even went far below that. He said just because your TSH is 4.44 you are far from hypothyroid. LOL Got rid of him and finally seeing a holistic doctor who are much better in my opinion. If people have a chance- go to a MD that is also certified holistic- you will get much further with them in your treatment


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