Change is slow: the everlasting frustration of thyroid patients, and this one in particular

In the daily emails I get from folks,  some make my heart ache. And a recent email just underscored to me how we still have a long way to go in changing the inane stupidity of the medical establishment.

Her email today was titled OMG, THANK YOU!!!!!!

She explains that for twenty years, she has been sick, fired doctors, had them fire her for being “uncooperative in my treatment”, and more. And today, after finding STTM, she wants to cry, laugh and “talk out loud to all those charlatans who call themselves doctors”.

And I completely identified with her. I remember those 20 years myself where I went from doctor to doctor to doctor, enduring dismissive attitudes, vain condescending deaf ears, clinical blindness, ignorance, lab worship, and a slew of tests that were either useless or extremely painful–all in the attempt to find out WHAT WAS WRONG WITH ME.

Today, after finding STTM, she exclaims: “the relief of finally being vindicated after all those years!”

She continued:  “Most of the time they didn’t even have enough integrity to admit they didn’t know…they would just look at the paperwork and say,”well, the lab work looks fine.” Then would come the implication that it was all in my head.”

She spent hours and hours of online research (boy does that sound familiar) and her breakthrough after too many years of poor doctors came with a single old school family doctor who ordered the cortisol test.  And finding the patient-to-patient STTM was the final victory.

I wish I had had something like STTM, once upon a time. But so be it. The kind of long term suffering I endured, as well as many others, is the reason STTM was compiled and created, and patiently sits there, waiting for each and all who are STILL in the same boat to find it.

She ended her email with “Thank you! Thank you! Thank you!” And all of us who have been there, and have finally found our sweet spot thanks to PATIENT WISDOM as outlined on STTM, say “You’re welcome”.

24 Responses to “Change is slow: the everlasting frustration of thyroid patients, and this one in particular”

  1. oplap

    “…enduring dismissive attitudes, vain condescending deaf ears, clinical blindness, ignorance, lab worship, and a slew of tests that were either useless or extremely painful…”

    Very well said.

    Reply
  2. Andrea

    Janie tell her my story and how mine is compounded with being autistic ON top of having hypothyroidism. I only suffered 10 years, still am somewhat but the individuals you told me about ARE trying their DAMNEST to help me.

    Reply
  3. Ileen

    Have been there myself.. thankfully not 20yrs though..

    Reply
  4. Catherine Clark

    The above is one HUGE reason why STTM website is part of my email signature!!!

    Reply
  5. Rainbow

    I’m a success story too thanks to STTM and the associated Yahoo groups. I was semi-sick for 14 years and VERY sick for 2 (of my precious newly-married) years. After treating my adrenals and coming to the realization that my body is happiest on T3-only, I am ME again!! Not ONE doctor helped me on my journey, except for the one that diagnosed me with Hashi’s (and he barely even did that). It’s a miracle to have my life back and I will never take it for granted again! THANK YOU THANK YOU THANK YOU!!

    Reply
  6. wendy hildmann

    thank God for the internet which allows us to search and study and find the true cause of our symptoms I cannot understand the total faith that so many individuals have in the doctors. it amazes me becauses there is very little that doctors can actually “cure”. we do that ourselves with our foods, supplements, exercise,pure water etc.

    Reply
  7. Virginia Shea

    Where do I get a good doctor (I live in Glen Burnie MD)to at least give the cortisol/adrenal tests? I get so exhausted, I can barely think, remember or function. But the cold intolerance is new for me—since I had a parathyroid tumor removed 9/16/08).
    Thanks
    Vi

    From Janie: http://www.stopthethyroidmadness.com/how-to-find-a-good-doc

    Reply
  8. Carrie

    Amen.
    Need this on a shirt or bumper sticker: “No, I’m not crazy, but the doctors who left me untreated are.”

    Reply
  9. Bridgette

    Thank you, thank you, thank you Janie. I do not know where I’d be if I hadn’t found STTM. It has taken 13 doctors to find the right one. With the help of STTM and RTH, I have gone in armed with knowledge and have received the treatment I have needed for so long. Thank you, thank you, thank you.

    Reply
  10. Liv Thompson

    I was diagnosed @ 15yrs old with a goiter/thyroid -removed part of it and a nodule.Since then now 62 I have had to cry fight stomp my feet and face doctors and others who could not understand what is the fuss all about I was the psychosomatic one ! I was truly thrilled to find STTM after hearing on a COast 2 COast program…very obscure programming but it seems odd ones like me listen.Thank you and I am staying on board w/my doctors to stay in the best health I can, regardless of docs treatments.

    Reply
  11. Pam

    If you are suffering — continue to look for answers and the right team to support/treat you.

    My thyroid auto-immune number had screamed past 700 with no end in site.

    I have a great doc, and we use potent natural solutions for my fibromyalgia. We finally connected the dots and engaged our holistic/compounding pharmacy partner in finding the solution for my thyroid… Beyond Armour and T3.

    In only four months, my number has dropped 478 points!!!
    This has also included a strong commitment on my part to be completely gluten and dairy free.

    I am seeing results! Don’t give up!

    Reply
  12. Amanda

    Oh man. I’ve only been trying different thyroid meds for 2 years so far… I feel like I’ve lost so much time, but then I remember that some people suffer for decades until they get it right. Heartbreaking. You all are amazing.

    Reply
  13. RiaTheDeer

    I,too, have spent over 15 years kicking and screaming to get tested. FINALLY got my thyroid out, (no thanks to a large goitre and Hurthle cells adenoma!) yet after 3 years of that, STILL can’t find a doc here in Australia to actually here me. We only have one brand of thyroid med and those who can get natural and T3 supplement pay through the roof and even then finding a compounding pharmacy is like looking for a needle in a haystack.
    Maybe in another 20 years we might have some relief in sight, probably too late for me though, already lost half my life to this rotten continuing illness known as Hashimoto’s and Idiot Doctor Syndrome.
    Cheers for the lady who found your site and book and is now getting the deserved help she needs.

    Reply
  14. Catherine Boyle

    I have been undiagnoised for many years . It was only when I went to see a kinegiologist who said my adrenals were worn out that alarm bells rang as my late sister had had Addisons Disease. I found Thyroid Uk who gave me some good advice and I discovered that my Mum and most of my Auntys have hypothyroidism. I asked the Dr to refer me to an endocronologist , one Dr was beside himself with rage
    that I had the audacity to be referred to an endocrinologist and slammed his fist on the table saying I did’nt need to see one . I ignored him and was passed from one endocrinologist to another and I was eventually discharged. I asked for a referral to Dr Skinner who confirmed that I had had hypothyoidism for most of my life and he started me off on thyroxine. I still felt pretty lousy and I found the STTM website and read about the wonders of Armour I asked Dr Skinner to let me try that, and the results have been life changing. Thank you Janie ,after years of being virtually unemployable , and having a miserable existence I am now running a successful business. I am now 45 and and so angry at all the years I have wasted. I really hope the Medical profession wake up as life is so short.

    Reply
  15. Jane Eyerly

    Janie
    Do you know of anyone who has ordered thyroid from Universal Drugstore and they didn’t have a supply in Dec? They sent me New Zealand ERFA and I’ve been having trouble adjusting — lightheaded at night and early mornings. Just this week, found a new doctor who said my TSH was 6.23 (it was 3.5 Dec 1st — just 2 1/2 months ago and I haven’t changed anything). Today I upped original ERFA Canada from 60 to 90mg and I feel better. Universal said New Zealand was the same as Canada. Help! Thanks so much. Jane

    Reply
  16. David Fields

    I CAN’T get help because I’m on Medicaid. No integrative-type physician in the Chicago area I can see. I’m Ill. Feel hopeless. All I can get is mediocre conventional blood work that speaks nothing. Somebody help…? Please respond with a comment here.

    (From Janie: join patient groups and put that you are looking for a doc in Chicago: http://www.stopthethyroidmadness.com/talk-to-others )

    Reply
  17. Tamrakat

    I was fortunate that I found STTM after 3 years of being diagnosed with “”fibromyalgia”” and “”chronic fatigue syndrome””. During those 3 miserable years several endos had told me my thyroid was working “just fine”. After reading STTN I was able to find an open minded doctor who diagnosed me with hypothyroidism and gave me the right thyroid medication. Two weeks later my fibro and CFS were gone. Coincidence? I don’t think so…..!

    Reply
  18. Sandra

    1 year ago last month I was blessed to find Janie and STTM and then my yahoo group thyroidless after going down hill 5 years earlier. I am a thyroid cancer survivor from 1994 and a previous bodybuilder and health nut. It got so bad that I was really ready to throw the towel in at work. I was saved in time. I found a good doc to treat my adrenals and give me natural thyroid hormone. It is taking time to correct all that has gone wrong from synthetic thyroid hormone and I now realize that it will take some more but I am getting my life back.
    Of course I get angry on some days when I think of what I’ve missed out on (children) and try not to envy those who have the energy to chase their dreams full tilt but I will do everything I can to make my health better and all because of Janie and the other wonderful ladies and gents who have shared their knowledge with us al I am armed with all the knowledge I can read to do that!

    Sandra

    Reply
  19. Kate

    Thank YOU!!
    I was on Armour then the reformulation and lack of dessicated hit…I was placed back on Levothyroxine… IT DOES NOT WORK! Then swtiched to Synthroid IT DOES NOT WORK. added cytomel IT DOESN’T WORK! More than two sickening years on synthetic meds! Along with Hashi’s I also have PCOS… I just went to a GYN and he said well since you can’t tolerate birth control pills your only option is a complete hysterectomy… I just saw on your site how heavy bleeding hellcious pms are symptoms of poorly managed thyroid…hello! I asked him what about my thyroid and pcos is this not the cause? He looked shocked and said well you’ve been doing your labs haven’t you? My God!
    I had an endo tell me I can take all of my synthroid in one dose at the end of the week (I was envisioning hospital visit) and the quack also said “You feel bad because you are ODE” (old) I am 43…come on seriously? lmfsao, though not funny! TODAY I went to a “doc in the box” for fluid on my ears and dizziness (hello! another symptom) and She asked me who takes care of your thyroid and pcos? I said NO ONE TO MY SATISFACTION! she said how about we do some labs and I will get you back on ARMOUR…I almost cried and hugged her! I am not back on it yet but OMG I see hope now! I don’t believe I will need a hysterectomy once I get my thyroid corrected with dessicated thyroid!! Janie, thank you for your work!!

    Reply
  20. Diane

    I had low thyroid diagnosed 7 years ago after years of symptoms. Started on Synthroid with some immediate results, but was getting a pain directly below my skull on the back of my neck. A friend recommended Armour Thyroid, but there was difficulty getting the right dosage and after a year something caused sudden short-term loss of memory. I also was under a lot of stress at work and home. The doctor immediately did an MRI & bone density scan. The bone scan showed signs that I was headed for serious trouble. Within 3 days I had back pain (never had previously), which went away after 2 months of taking 600mg calcium daily. Web research shows that Armour Thyroid usage depletes calcium. I stopped meds(the doctor wanted to add a hormone-replacement med, and both of us forgot to get the thyroid prescription renewal). My old symptoms have returned, but some of my memory has returned.

    From Janie: Diane, you aren’t quoting complete information about desiccated thyroid and calcium. The calcitonin in desiccated thyroid…which is the same as in your own thyroid…lowers calcium levels in SERUM as a way to prevent TOO MUCH calcium from building in your blood. i.e. calcitonin is an important “regulator”, which is good! In turn, it means more calcium will stay in your bones, which is why desiccated thyroid IMPROVES bone density. When anyone goes the opposite direction when on desiccated thyroid, it means the person either wasn’t on enough desiccated thyroid (which leaves you hypo, and thus bone problems) or had either low cortisol from adrenal fatigue or low ferritin/low iron (which leaves you hypo). i.e. your bone scan was reflecting one or both of the above, NOT the fact that you were on desiccated thyroid. http://www.stopthethyroidmadness.com/things-we-have-learned

    Reply
  21. Barbara

    (From Janie: I’m going to do a new blog post about the removal of thyroids. Except for cancer, MANY thyroids are removed simply from Hashi’s and doc’s not knowing how to treat correctly You should repost this there. Watch for it in the next 24 hours.
    ***********************

    I have multi-nod goiter since 2005.Nothing done by docs. Now? They all want to remove thyroid. But I am in range.

    I am more concerned with daughter. lost left lobe at 19 because of a nodule- docs said “could be cancer” Put on Synthroid ONLY. After a year or so, pcp then put her on levo and anti-depressants, meds for acne, bc pills for period issues, etc. Daughter went thru some serious issues. Her husband left her. She went to ER for awful sore throat that lingered for weeks. Given high dose anti-biotics. Later a test given said she was pos for EBV. nice. could she have had mono when at the ER? Her weight went up to 210 quickly and blood pressure became high, too.

    She divorced, finished school, moved back home.I found a doc who tested her for gluten *she is sensitive, pcos, yes this too. So, she is Hashimotos, hypo, pcos and gluten sensitive. She is then put on cytomel and synthroid. I found dietician that put her on small amount of iodoral 12.5 mg for almost a year now.

    And this is where we are at. No changes for a year. She is gaining again. The acne is bad. She is having issues with the hair all over her face. She is off bc pills. No anti-biotics too.
    She is gluten free, organic and trying to be stress free. She has NO MEDICAL INSURANCE. Her supposedly Armour friendly doc refuses to put her on Armour! I am not sure what to do anymore. Where to go. How to help.

    How can I help her get all of these issues under control? She is now complaining of joint pains. OMG.
    She is only 25 and living in auto-immune disorder hell. I wish I could help her somehow. Is there anyone with all of these disorders that is on a medicine that is helping somewhat? I hate to push the Iodine on her – but I am not sure why. I take alot of it and so far so good. But I tend to be hyper. Removal and T4 wasn’t the answer for her but all of her doctors have NO idea how to help. All that time and money – wasted.

    Reply
  22. notapatientgirl

    This is exactly what I felt when I found out I was hypothyroid. My healthy habits made my labs stellar but the weight was still there. This blog is the only thing out there for people like me. I am frustrated that I’ve been suffering this alone and other people just do not understand that anger and frustration.

    Reply
  23. karen

    for barbara..try thyrogold. ive been taking thta for 8 months or so. also have adrenal fatigue and is getting better after seeing a naturpath who reccomended supplements that are helping.im so glad organic. especially try organic fresh local foods also if you can ,organic raw milk from local small raw milk pasture raised cows farm.

    Reply
  24. Theodora

    I totally relate. I found this blog tonight and it’s lifted my heart to know I’m not alone in this struggle. Years of frustration and more to come, but it’s good to have company! Still trying to find the right doctor, etc., but at least I have found a resource from an understanding point of view.

    Reply

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