Patient EXPERIENCE is the evidence. Are doctors listening? Nope.

“The majority of people with hypothyroidism taking thyroxine are satisfied that it works. This is a simple matter of fact, not my opinion or bias.”

Cough. The above comment came directly from the keyboard of a doctor. He was conversing with someone in the discussion behind an online dictionary entry on desiccated thyroid. And as you read the entire conversation, you clearly see that this doctor firmly believes that “thyroxine works well for most people with hypothyroidism.” He also adds “Whether you like it or not, it is the simple truth, supported by many types of evidence.”

And guess what the “evidence” was!! Ready?? Here goes: “Published trials, experience of doctors, and sales figures.” Wait. I need to highlight that: “Published trials, experience of doctors, and sales figures.” 😆 😆 😆

Yessiree, doctors certainly have their eyes open.

Frankly, if it wasn’t so sad, it would be hilarious. And the reply by the other person: “Since when is evidence ONLY found in trials, doctors and sales figures, and not also in the experience of patients??? ….it really does besmirch the intelligence and experiential accounts of a growing body of patients out there who are spreading the word of their experience. It reminds me of the patient who comes in saying they have a stomach ache after eating four Milky Ways, and the doctor saying there are no “trial, observations, or sales figures” to support the claim of a stomach ache, so the stomach is dismissed while the patient walks out in agony with her sample anti-depressants in hand.”

Couldn’t have said it better. Because there is profound evidence right in front of the noses of every single doctor that T4-only treatment does NOT work, and desiccated thyroid IS working. Us!

But the insult continues. In a recent article in the Baltimore Sun about natural vs. synthetic products, it was stated: ” There is no evidence, however, that the animal extracts have any advantage over the synthetic versions, according to the American Thyroid Association.”

Yikes. Does any of the above tell you why patients have lost SO much respect for doctors, the American Thyroid Association, or the American Association of Endocrinologists…to name a few?

WE ARE THE EVIDENCE. Open your eyes.

24 Responses to “Patient EXPERIENCE is the evidence. Are doctors listening? Nope.”

  1. Stanley Z. Felsenberg

    I had most of my thyroid removed about 20 years ago due to enlargement only (no Cancer found). I was placed on Armour thyroid. I did well through the years. I did develop sleep apnea and was placed on a CPAP machine. It relieved my most troublesome symtom, namely severe daytime drowsines. In the past year, my doctor took me off of Armour and placed me on levothyroxin, an equivalent dose. This was because my insurance would no longer pay for the Armour. I never gave it a thought until I read the article in the Sunpaper yesterday concerning symptoms that develop when switched to L-thyroxin. I have picked up a lot of weight (25 lbs or so). Also my daytime drowsiness from what I thought was due to the sleep apnea become worse in spite of the usage of Provigil,a new drug that is to combat daytime drowsiness. This drug worked at first and then lost its effectiveness after I was switched to l-thyroxin. Also I now have insomnia requiring the use of Ambien-CR and also have some mild depression. I intend to get my thyroid restarted and then I will see what happens. PS-I am a retired physician.

    Reply
  2. Kiki

    Welcome to the world of allopathic medicine.

    I have suffered from autoimmune insomnia for over 8 years. I was told many times over those years by many physicians it was depression causing my insomnia.

    I was labeled a “problem patient” because I wouldn’t accept a diagnosis of depression. I was told that I couldn’t “blame everything” on my thyroid, and I needed to “think outside of the box” to get well.

    I managed to gain a total of 47 lbs and lose 54 IQ points. I developed bald spots and stopped growing ancillary hair. I gained weight on Atkins induction AND during a 4 day bout with a rotavirus. I went from regular to severely constipated.

    All of these symptoms and signs were attributed to depression by these ignorant doctors.

    Now, eight years later, I have been treating with natural thyroid to the degree my symptoms warrant. I am finally healing. And more recently, I am sleeping again. No thanks to all those physicians.

    I have wondered many times over the years if these doctors were stricken with the very same illness, would they understand what was going on, and learn to help their patients restore their health?

    Congratulations. You understand. Now get the word out.

    Reply
  3. SeaLady

    Could you tell me more about “autoimmune insomnia”??? I have never slept well, went un dx’d for 50 years, first hyper and then my thyroid wore out. No I am hypo, with a goiter and 7 nodules, which my oh so wonderful GP doc missed for 14 years!!!!

    I was also labeled a problem patient or even worse. I am sure he thought I was a hypochondriac. I had all these little things going on, but mostly I just couldn’t fall asleep – kept telling him my body wasn’t making something, that I couldn’t complete the “connection or circuit” in order to fall asleep. His solution……….take 4- 6 Halcion a night!!! This stuff is legal LSD, it doesn’t make you sleep – it knocks you out!!!

    I am still very sick, my Armour is not being taken in or used by my body – so I am doing Adrenal support, have done the spit test, and am also looking into Lyme Disease.

    With NO help from my Endo.

    Reply
  4. Rachel

    I just wanted to say that as a patient living in the UK it’s interesting to see that the treatment is just as unbelievebaly inadeqaute and rigid in the US. I am a very frustrated and irritable person thanks to battling to get my continuing symptoms taken seriously ( I am on T4 only).I have times when I’m not sure whether it’s the thyroid or the constant sense of being told it’s in my head, or due to my diet etc. that is making me so depressed! Yesterday my doctor recommended a ‘high fibre diet’ ( there is nothing wrong with my diet, for the millionth time!!) and senna laxatives to help my bowel problem which as far as she is concerned has nothing to do with my thyroid condition. What a remarkable coincidence that I have hypothyroidism and am suffering symptoms which just so happen to look very like my symptoms when I’m hypo! But obviously they can’t be down to my thyroid as I’m supposedly OK due to a blood test which tells me nothing useful at all! I have asked to be referred to a specialist and hope he will see sense.I’ve felt very alone with this problem since I was diagnosed 4 years ago at 22, and appreciate your efforts to give us a voice!

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  5. Kathy Pflederer

    Wow. Just to know I’m not alone in this madness brings tears to my eyes. I probably have suffered at least 10 years with a large family demanding I stay functioning. Which I wasn’t for a long time.
    I think my MD believes me when I tell him I need my dosage changed (Cytomel/Levothyroxine). Just recently I had to up meds myself and I call office to let them know I changed it. Have learned everything the hard way. I have felt great but I am noticing the hypo symptoms come back if the dose is not right. I am upping the T3 when symptoms come back. Wouldn’t mind changing to Natural Thyroid but am having good results so far on what I’m on. I had to beg,beg, beg for the T3 from my endo but that finally cleared up the aches, itchies, tiredness, and so on. My regular MD listens more to me. Fibro symptoms disappear when I am on the right dose. I can’t believe I feel so good. It’s better than realizing I could be dead from all the trauma.

    Reply
  6. Catherine

    I have been keeping a blog about my thyroid symptoms and a reader’s email brought me to your site. I cannot begin to tell you what I have gone through over the past 4 years trying to get proper treatment for my Hashimotos. If someone has not experienced it themselves, they would have no idea what this madness is like. We just want to be able to function like a normal person. I cannot get enough of reading story after story here just like mine. It is wonderful to know you are out here and I am adding your site to my blog to refer other sufferers over. You are all in my prayers with me. I seem to be getting better with Armour and T3. T4 was a total bust for me. Sincerely, Catherine (http://journals.aol.com/rapieress/Aweekinthelife/)

    Reply
  7. Gail

    I guess that I’m not losing my mind because there are so many of you that are having the same problems that I do.

    I was diagnosed several years ago and was put straight on Synthroid. Since 2004, I’ve had severe muscle/joint pain that seems to “roam” from area to area. I’ve also had the fatique, insomnia, hair loss and a whole gamit of other problems. There were times last winter that I couldn’t even get out of bed because I hurt so much. Bed by 7:30 because I couldn’t do anything else. Normal pain relievers ie: ibuprofen, aleve, tylenol, even lortab and ultracet didn’t touch the pain. That is what made me believe that it wasn’t “normal” pain. My NP didn’t have the knowledge and put me on Celebrex.

    This summer I realized that I really needed to do something if I didn’t want the same thing to happen again this winter. I went to see an Endo. I took along my previous lab tests that showed my TSH at 2.2 and he said that was in a “good range”. I asked about T3/4 and he said they weren’t conclusive tests. After listening to my problems he decided that I was vitamin deficient in D, calcium and iron!! Needless to say that the elevated doses haven’t done anything for me. I did get him to change my Synthroid .125 mcg to .100 mcg and 10 Cytomel. He agreed because if it didn’t help it wouldn’t “hurt” me.

    I see him again this Friday and I printed off a lot of things that I found on the internet including a list of 39 hypo symptoms that I checked off 27 that I still have, most of this website and several pt comment sites that talk about supressing the levels. I priority mailed it all to him today with a note stating that my gut still tells me it’s hypo since I’m not feeling much different after taking the vitamins for the last 6 weeks and I looked forward to hearing what he had to say.

    Reply
    • Mary

      After I had radioactive iodine treatment for Graves disease (1983), I needed thyroid supplementation. Was put on Synthroid. After a while (don’t remember how long), I developed severe joint and muscle pain. Experimented on myself by taking myself off for a few days, then back on. It turned out there was a 48-hour time lag. Once the 48 hours had passed, I could again walk 2 miles in the same amount of time in which I could walk only 1/4 mile when the med was in my system. Internist pooh-poohed this and increased my dose. My heart rate went through the roof. Found an endocrinologist. His response was that he had a lot of patients who couldn’t tolerate Synthroid. I’ve been taking Armour thyroid ever since, but now I seem to be developing problems with that.

      Reply
  8. Dev

    I started on t4 when I was 25, now I’m 57. I look back on those years and realize that synthriod was the cause of many of my problems. A ruptured colon two knee replacements, bad arthritis. The constipation has been relieved by adding magnesium, that the Dr’s don’t tell you is caused by being hypo. I feel better since I have taken back my life.

    Reply
  9. sandra

    It seemed I begged for years from 1991 to 2003… all the way from being labeled with anxiety disorder.. to Fibromyalgia.. as a result of not being diagnosed.. and clearly not understanding what was happening to me.. I miscarried many times.. put on SINthyroid.. what a nightmare.. I thought I was going nuts.. called the doctor 76 times in a one week period because it was doing things to my body that would scare any human being.. he told me I was imagining everything.. ..he never listened.. I almost lost my life..then i found Armour thyroid.. my life.. my family.. my mental state.. and my body.. although still suffering from the years of not being diagnosed..is on the road to recovery. When i hear a doc telling me that Armour thyroid is not good for you .. I laugh in their face.. and turn around and leave. SINthroid HURTS!! Armour HEALS!

    Reply
  10. nutralady2001

    Yes have been following this conversation with interest. Big kudos to the thryoid patient keeping the doctor on his toes!!

    Sales are proof…….hahahahahahahaha..**cough**Gee doc wonder why the sales figures are so high?

    Guess what, have been on Armour for 5 months.This Saturday 21st October had been the day I planned to leave this planet (long story why I chose that date) after 12 years on thyroxine

    And guess what again? Today I went online to Interflora and ordered a big bunch of flowers to be delivered to me on Saturday 21st October with the message “Today is the first day of the rest of your life!”

    How’s them apples Mr Doc with your “Published trials, experience of doctors, and sales figures.” ……….thanks Janie for the wonderful work you are doing. People like you have saved my life

    Reply
  11. Catherine F. Clark

    After 25 years on the various versions of $ynthcrap I am now getting adrenal support (SP dessicated adrenals & isocort), iodoral (iodine), and Armour for my thyroid. I was diagnosed 25 years ago but never got optimal treatment. I am now on my way to wellness, no thanks to ANY doctor on the way, most of whom said Armour is junk! It is the other way around – $ynthroid is junk!

    Reply
  12. patsy earp

    I was borderline hyper for aprox ten years. Suddenly i gained 25 lbs in one month. My endo put me on synthroid. my results showed no t3 results at all. I ask him to put me on armour and he did. He told me i was blowing everthing out of proportion meaning mentioning weight gain and depression to him. I started crying and he told me i would never weigh 110 lbs again unless i was dying of cancer. I am barely five foot tall. he told me to do arebic exercise twice a day and eat no more than 600 calories to get down to 120 lbs. then he said for the rest of my life i could eat no more than 1200 calories a day to maintain. Is this true? I really am depressed and i feel i offended him when i asked for the armour.

    Reply
  13. dorothy

    I feel like death warmed over, have for years–all the symptoms of hypo. One day I mentioned the way I felt to a person, & he told me about someone who had tried Armour and felt so much better. So!! I got on my computer and started to research Armour and Cytomel….The more I read the more excited I got! I’m thinking over and over my gosh that’s me, this symptom and that symptom…one right after the other. Then started reading how every Doctor will poo poo the idea. I’m taking 125 mcg of levothyroxin, raised from 112 mcg, this was after taking one month supply of Zoloft, which I read effects the output of the T4. Anyway, I prepared some articles off the computer about Armour and Cytomel, and I wrote a very nice letter to my endocrinologist and told him I had set up an appointment to see him, AND HOPED HE WOULD WORK WITH ME TO TRY ARMOUR. I wanted to tell him how terrible I was still feeling, and about the Zoloft article. I couldn’t wait for my appointment to get started on the Armour, just the thought that maybe I could really feel better was overwhelming. !!WELL!! A few days later, I got a letter from the “HIGH AND MIGHTY “endocrinologist” that knocked the pins right out from under me. HE SAID “To save you from your frustration & disappointment in discussing the use of cytomel & Armour with me, I have recommended to our staff that your appointment be canceled”. Then he said, the use of Armour or Cytomel is a very serious matter evaluated by double blind randomized studies in the recent years (more then ten large studies now) finding no evidence whatsoever that it is a superior system. Then he was harsh enough to say “IF IT WERE BETTER OR AS GOOD TO USE EITHER AGENT I WOULD HAVE CHANGED SEVERAL YEARS AGO. “==== So !! Tell me! How rude and hurtfull and blind to your patients can you be!! He wouldn’t even let me come in and discuss it. I WILL NEVER GO BACK TO THAT MAN AGAIN. But it sounds like I’m going to run into that small mindedness over and over again. I’m now in the process of trying to find someone that will prescribe Armour or Cytomel and keep a close eye on the results. I have an appointment with my G.P. but don’t know what he’s going to say or do or if he’s even qualified to work with either! If not I’m hoping he will send me to someone that will work with me. I so dread that he will pat me on the head and agree with the high and mighty endocrinologist. HE BETTER NOT. I feel so helpless in this situation. Do you feel my utter frustration!! Thank’s for letting me spout.

    Reply
  14. Cliff Trapp

    Thank YOU! Thank you! I am blessed to have found your website! I am experiencing a medical merry go round, and let me tell you most sincerely – I WANT OFF!!!!!

    I just came back from a clinic THIS MORNING. They told me I could go to a endocrinologist if I wanted Armour Thyroid. They chose their words carefully, but the bottom line is – the endocrinologists don’t like non-specialists prescribing Armour. So – my take on it is – there is money and professional turf at stake. And these considerations are more important than the patients health.

    I have been rebuffed on other medical issues by doctor after doctor. I could write a book, and I definitely don’t plan to remain silent about this. I AM FILLED WITH OUTRAGE for the past 12 years of medical mistreatment – and I won’t be silenced by the white coated authoritarians who ignore my well being just to prop up their ineffective and potentially harmful practices.

    WE LIKE SHEEP knuckle under to their hardball game. But I’m onto them now and I refuse to play their dirtball game anymore.

    Reply
  15. Cliff Trapp

    One more thing

    During the same visit this morning, in which they refused to give me Armour – they recommended and gave me a prescription for Lipitor – my cholesterol is too high.

    HELLO OUT THERE! – It’s a good bet my cholesterol is high because my thyroid is poorly treated.

    Hello? Hello? Anyone out there in doctordreamworld wanna wake up and serve us?

    Reply
  16. Cliff Trapp

    Sorry, I described the above as one appointment, it was actually two appointments to the same clinic, and two different doctors. But the results are the same, I just got typing away and ran the two events together. But I think accuracy is important so I’d like to clear that up.

    Reply
  17. sera2101

    After looking at your list, and listening to some of the wonderful ladies at 3fatchicks.com, I’m convinced I’m hypo. I have so many of the symptoms. My doctor said it was only depression, because I “felt more of a mental exhaustion than a physical one.” And she had the gall to talk to me like I was insulting her by questioning her reasoning! I’m going back in a few days, seeing a different doctor instead of her. I’m taking him that list with my symptoms highlighted. I’m also getting a copy of my last test results. I want a few second opinions form the people here.

    If only I had insurance, then I would get all the correct tests done, not just the ones the doctors do.

    Reply
  18. JMC

    I just want to thank all of you (moderators) of this wonderful website that saved me. Hashimoto’s disease just about robbed me of the past 2-3 years of my life. I was just EXISTING. I shudder when i think what could’ve happened to me if i had stayed on SynPoison (Synthroid, which did nothing but make me ill in the long run with antibodies 773 & thyroid #’s all over the place) and not switched to Thyroid (generic Armour), divorce, the nuthouse or both! I am still dealing with female issues but i firmly believe they will be adjusted. But for the most part the puzzle pieces are slowly coming together. I am slowly losing weight (put on 20 or more this past year on Synthoid!) and have my energy back. Dr’s (and you ARE reading this) start listening to your patients NOW.

    I wish i can take all that money spent on useless endo’s & give it to all of you, you’re the ones who deserve it!

    Reply
  19. T. Laura

    I just want to say thank you to everyone posting their experiences. Last year after spending 2 years going from Doctor to Doctor, I was finally diagnosed with Hypo. I have had every crazy symptom imaginable–irregular heartbeat,numbness,chestpain,sore body/joints,0 sex drive, almost nodding off in my car while driving, and 0 short term memory. I was to the point of not being able to function properly as a parent-let alone a person. I am finally seeing a GP who specializes in Thyroid Disorders. The Endo I saw before him only believed in lab results. I told him how terrible I felt and how long the issues had gone on and he said I was mildly hypo, with a TSH of 9. Pretty far from mild. That Doctor only believed in Synthroid. My 1st GP was scared to try anything but Synthroid. The GP who specializes in Thyroid Disorders whom I have stuck with- treats my symptoms. Yes, we still look at lab results, but his goal is to treat me and my symptoms. No, he didn’t put me on Cytomel until we had tried many other supplements etc. to help with the Adrenal fatigue, but when I still had lingering symptoms, he said let’s give Cytomel a shot and I’m so glad he did. I noticed an improvement immediately. It’s been a few months and seems to have worn off a bit, but I am going back to see if can increase my dose of Cytomel some more to help with fatigue/brain fog that seems to be creeping back. I’m currently on 75mcgSynthroid 5Cytomel. I am so thrilled I’m on my way to getting back to old self!!The key is that you can’t take No for an answer. We all have to be proactive, and be an active participant with our Doctors and how they plan to treat our disease. I believe their are so many ignorant Doctors out there. Honestly, why would patients like ourselves want to waste our time going from Doctor to Doctor trying to get better medication, if it truly weren’t in our best interest??? As tired and as horrible as we feel on Synthroid alone… the last thing we feel up to doing is fighting this ridiculous battle over giving us T3 medications! Too bad more Endocrinologists aren’t actually Hypothyroid. I truly believe this would be a non-issue if there were more Docs suffering on Synthroid alone. Best of luck to all on conquering the symptoms of this disease. (from Janie: good luck at the next visit, and consider demanding a switch to Armour, which gives you T4, T3, T2, T1 and calcitonin–exactly what your own thyroid would be giving you! :wink:)

    Reply
  20. renee

    I had half of my thyroid removed due to a very small malignancy. I have been on 112mcg of this poison called synthroid. I have gained at least 30 pounds in the last 3 years. My Tsh level is 2 and doc says that is great. Well it isn’t. I feel horrible. I felt better when it was at 5 or 6. I have stopped taking synthroid all together and am pursuing other options. In the past 2 days I have felt like myself once again. My children want to know where mean mommy went. That makes me want to cry. In just a matter of 2 days off my sex drive is coming back. Don’t tell my husband that though LOL! I just want to feel human again. Thanks to all of you for sharing your stories.

    Reply
  21. Mari

    I have been on Armour and Iodoral for several months now.. Loosing weight and gaining muscle tone. No longer have to turn up the hotter level in the shower.. (not cold anymore) .. my tsh was a high of 7..
    Look forward to seeing my next blood panel.
    Mari

    Reply

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