…and for the same reason, it may be hell being YOU if you are an INFORMED thyroid patient.
Continue reading….(and if you are getting this as an email notification, do NOT reply to the email. Go to the actual blog post.)
For anyone reading this who has no idea who I am or what I’m referring to…
My name is Janie A. Bowthorpe, M.Ed. I am a hypothyroid patient of many years. I also recently acquired Hashimoto’s as of this year, the autoimmune version of a thyroid problem. Long story about the latter.
And there was a past period of nearly 20 years in which I suffered. I suffered at the hands of numerous poorly trained, blind, and zombie-like medical professionals, no matter how “nice” they were as people. You can read my story at the end of this article.
And after those 20 years of misery, I had to get well by the seat of my own pants and my own direction. And it turns out that my experience was FAR from alone. It’s become obvious that easily millions worldwide over the past several decades, with hypothyroidism or Hashimoto’s, have paid a price.
Ultimately, I was angry at the horror of what I went through for nearly two decades, all while being told I was normal. I was also horrified as I began to see that I was NOT alone.
So I started a patient-to-patient movement in 2002 which ended up being called, by me, Stop the Thyroid Madness (STTM). It has had key groups, the website, the facebook page, and the books.
And what constituted the movement that I started? It was and still is a complete patient-to-patient movement about getting well. It was about OUR experiences, OUR observations, OUR wisdom…NOT about what doctors were being taught, and clearly what they were NOT being taught, which has served to keep millions sick and tired for decades (including my own mother who suffered from a poor treatment).
And neither the Stop the Thyroid Madness LLC (STTM) books or the website are about “opinions” which exist like flies around a horse. Anything associated with STTM is about our solid and consistent experiences, observations, and wisdom …worldwide. I had no choice but to make the focus on all the latter. Why? Because too many medical professionals act like their (abysmal) thyroid training is from God Almighty, and have been harming us–the latter as experienced and expressed repeatedly by patients worldwide.
So why am I saying it is hell being me, the person who has been compiling all this patient-to-patient information, and whose head is full of the info?
REAL SITUATION ONE with my use of hydrocortisone: Once after moving to a new town, I began the hunt for a new doctor in my new location. And I thought I found a good one. At our first visit, I happened to be on a physiologic and safe dose of hydrocortisone (HC) due to high chronic stress which had tanked my cortisol levels. It had been prescribed by my previous very open-minded doctor. And based on nearly two decades of safe patient experience with HC that I had been collecting and compiling on STTM (see chapters 5 and 6 in the updated revision STTM book), I knew what I was doing in its use, as have a large body of patients over the years. Yet he proclaimed “You are simply going to permanently stress your adrenals.” All I could do is give a huge silent “sighhhh”. I tried to gingerly explain there’s a difference between my physiologic dose vs a pharmacologic dose, and that I would eventually be weaning off since the chronic high stress was abating. He stared at me like I was a lunatic (and I was able to wean off within the next month, by the way)
REAL SITUATION TWO with my labs being “normal”: I once went to urgent care. I was having very strange pins and needles situation in my feet, my left pinkie, to the left of my cheek. Thought I was having a stroke! Labs were done, and the physician proclaimed “All is fine and normal (meaning in range)” and sent me home with the diagnosis of neuropathy. But having observed lab results for nearly two decades and compiled what we were observing, I knew what the problem was when I got home and previewed my labs: my potassium was two points from the bottom of the range! We aren’t meant to be that LOW–healthy levels are usually a few points above midrange for nearly everyone we have observed. I proved it by immediately drinking coconut water several times a day for more than a week and onward (it’s high in potassium). And it all went away. When I got an email that asked me to evaluate my experience, I stated that a potassium result THAT low is NOT “normal” except with sick people who made up the “range”, and how patients with the right amount of potassium are usually a few points above mid-range! I got SILENCE from that survey instead of the typical reply these surveys get at the local urgent care. https://stopthethyroidmadness.com/lab-values.
REAL SITUATION THREE with my husband’s aldosterone, which JUST happened the other day as I’m writing this: I had been suspicious for months that my husband’s aldosterone was low. He pees a lot at night; his sodium is towards the bottom area of the range; he craves salt—-all symptoms of low aldosterone which I have written about as well. An aldosterone test was done: 3.28—the range is around 2-24 for that facility And what does the doctor say? “He’s normal.”. OMG. I tried to gingerly explain that years of observations show that when someone does NOT have an aldosterone problem, they are nearly all in the upper quadrant of the range, NOT towards the bottom. His low result CLEARLY shows low aldosterone. And of course, I am dismissed, the topic changed, and his low aldosterone is not being approached to find a safe treatment. https://stopthethyroidmadness.com/aldosterone and more in Chapter 6 in the updated revision STTM book.
But this hell is not just for me as creator of STTM!
Today, there are a huge body of “STTM informed” thyroid patients who walk in their doctors offices and get the same or similar displays of condescending disdain or dismissal. Patients are treated by far too many medical professionals as if we couldn’t POSSIBLY know what is right and what is wrong.
Or the practitioners narrow-minded, medical-trained beliefs are shut SO TIGHT that they can’t see past their own noses and then make the following nutty statements:
- “The Synthroid/Tirosint/Eltroxin/levothyroxine does a fine job treating your hypothyroidism”. You clearly aren’t paying attention to what just a storage hormone is doing to us. Hey, did you know that your medical school training is greatly financed by the makers of Synthroid, doc??
- “Your TSH is too low and will permanently shut down your pituitary.” It never has!
- “Your suppressed TSH will cause bone loss and heart problems.” To the contrary, the optimal free T3 and free T4 we achieve has proven to result in stronger bone density and better heart health!
- “We need to lower your T3-containing meds to raise that TSH”. Thus we get more hypothyroid–aren’t you proud?
- “Your lab results are “normal”, so there’s nothing else to do.” Lab results have NOTHING to do with falling anywhere in those ridiculous normal ranges!
- “There’s no need for the RT3 (reverse T3) test.” To the contrary, a rising RT3 reveals either low iron, inflammation, or high cortisol. A rising RT3 makes us more hypo. And with rising RT3, we need to greatly lower T4 and add in T3.
- “There is no research/evidence to back what you are saying.” And THAT is where you are wrong if you took the time to really search for and look at research. Besides, nearly TWO DECADES of consistent and reported patient experiences, as collected and displayed on Stop the Thyroid Madness, proves what we now know. WE are the evidence.
- “T3 in one’s treatment is dangerous.” No, when T3 causes issues, it’s about what the T3 is revealing.
So if you are an INFORMED thyroid patient thanks to patient-to-patient Stop the Thyroid Madness information, make a comment below and explain HOW you, your lab results, your meds, or your problems were dismissed. Because if a practitioner dismissed YOUR knowledge, he or she is dismissing nearly two decades of strong patient experiences and wisdom!
More reading:
Janie’s story here.
What patients have learned here.
Research which backs up what we have learned by our experiences.
The STTM books–very worthy to have on hand.
Order your OWN saliva cortisol test here.
Important note: STTM is an information-only site based on what many patients worldwide have reported in their treatment and wisdom over the years. This is not to be taken as personal medical advice, nor to replace a relationship with your doctor. By reading this information-only website, you take full responsibility for what you choose to do with this website's information or outcomes. See the Disclaimer and Terms of Use.
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52 Responses to “It is Hell being me…”
AJM
I came to the sttm blog today because I needed the validation after going to a primary care doc today to get established as a new patient. I’ve been on ndt for years and my previous docs dosed based on symptom relief and the frees so of course my TSH is suppressed. First thing this lady says is that I’m on a “huuuuge dose of thyroid” and she can’t believe how much I’m taking. I’m on 2.5 grains a day, not even that high! She hadn’t even seen my numbers yet. I showed her my recent labs and explained that while my TSH is very low, you can see my frees are in a good range and I’m sitting in front of you with perfect blood pressure, pulse, healthy weight, etc. She still wasn’t having it and wanted to send me to an endocrinologist because I’m on such a high dose so that could mean I’m not “absorbing” my meds and my TSH could cause heart damage. I’m glad I had to wear a mask so she couldn’t see the disgusted look on my face. Sigh….uninformed doctors make me so tired! So thankful for this site although as the title of this post suggests, sometimes it’s hell knowing the truth!
Janie Bowthorpe
Love your post. Yes, it continues to be amazing how backwards doctors can still be. I personally need 3 1/2 grains to be fully optimal.
Stephanie Sanchez
I have been on 60 mg of Armour for years. Doc’s raised it since my TSH was 11.9 so I was on 90 mg for a few weeks.
But then ( I had a very bad fall in August) I was put on blood pressure meds, which very well could have caused my potassium to fall dangerously low. 2.7 . Also my sodium was 132 instead of 135 which is the cut off.
I had a heart rate of 129 last week. I had been changed to 75 mg of Levothyroxine for only 3 days. I am not saying that it caused the fast pulse but I have not had it happen again since I went back to Armour at 75 mg. The other numbers are normal cortisol, reverse T3.
I now have a heart doc who took me off of all blood pressure medicines. My question is that I know get vey anxious and I feel it all over. In my muscles, my fingers my lips. My sodium as of two weeks ago was still a little low 132. I drink coconut water a lot now since they want me to limit my water so I do not flush my minerals ..
Any suggestions for the anxiety?. They want me on an anti depressant/anxiety medicine called Lexapro but I drink Calm tea instead.
It has some passionflower and lemon balm. Still the anxiety comes and goes and it is very real and very scary pulse goes up to 106 and stays there. Any recommendations?.
Janie Bowthorpe
Stephanie, if we stay on a dose that low (which we aren’t meant to at all), it can cause adrenal stress–i.e. both a cortisol problem (too high or too low) and an aldosterone problem. The latter can cause the low sodium and potassium issues.
Read these pages:
https://stopthethyroidmadness.com/adrenal-info
and
https://stopthethyroidmadness.com/aldosterone
Michelle Busch
I was diagnosed with hypothyroidism Hoshimoto’s disease in 2017. I’ve been literally screaming inside my own body. I CANNOT get ANY doctor to listen to me. LEVOTHYROXINE doesn’t work for me but for some reason, after 4 endo specialists and 3 different primary doctors AND NO change in my body, doctors insisted only on taking Levo SO, every visit and blood test was only increase or decrease in dosage. I finally took myself off of it and had a doctor allow me to try 5mcg of Liothyronine which is citromel. I’m not 100% but BETTER. my doctors are unwilling to work with me and check other things out so I’m at a loss where/what to do next.
Janie Bowthorpe
Yes, a squat dose of 5mcg will make anyone feel better, but it will eventually backfire. It’s hugely underdosing anyone. Doctors are apparently communicating to ONLY prescribe 5mcg, which is pitiful and should be raised from every week to achieve what is seen here: https://stopthethyroidmadness.com/optimal. Call around to pharmacies and ask for names of doctors they remember who are prescribing T3. Call a lot of pharmacies. It can take that. ALWAYS say it like this “I am looking for the name of a doctor that you are noticing prescribes T3 so I can make an appointment with him/her”. The latter may make them feel more at ease giving out a name. Pharmacy techs get messed up and think giving out a name is “private’. No, it’s patient information which is private.
Mary M
Hi Janie,
I hope your husband is doing better and am writing because I experienced two painful episodes of severe dehydration due to low aldosterone/ damaged adrenals and want to share a solution that works for me. Literally, a solution.
Merck Manual has a recipe for a rehydrating solution:
1 liter water (reverse osmosis)*
1/2 teaspoon salt (Himalayan Pink)
1 Tablespoon sugar (maple syrup)
*my own modifications
This is my substitute for water. It seems like a lot of sugar, but that’s necessary when you have adrenal insufficiency. The sugar makes the salt go directly into the cells, not the interstitial spaces. I’ve tried to get around this in many ways, such as substituting eating something with sugar and then drinking only salt water. It doesn’t work. I don’t know the chemistry, but the solution works great for me.
Drinking plain water with this low aldosterone condition creates the following symptoms for me:
-Bruising, especially in body regions that are not exposed and prone to bruising
-Leg and back cramps
-Dry feces
-Dehydration
-Hyperurination
-Neuropathy/numbness, hands, in my case
What keeps me hydrated and healthy is drinking daily 2 to 2 and 1/2 liters (quarts) of this solution.
Thank you, Janie, for all your effort in helping so many. Much appreciation to all who help at STTM web pages and forums!
Blessings and Health,
Mary
jrbor
I left my story on your other blog but my life has been miserable for the past four years. Hopefully now that I’m informed I will interview different health professionals and hire one to manage my thyroid or at least write the prescriptions I need.
Been There Gal
I am reading this blog and nodding in agreement that most general doctors and endocrinologists don’t have a clue about diagnosing and treating hypothyroid. More than 10 years ago, I had debilitating fatigue, heart palpitations, panic attacks and anxiety, hair loss and weakness. No less than 8 trips to the emergency room, two by ambulance, gave me a number of different diagnoses, all of them true, in part, but missing the big picture: hypertension, cardiovascular disease, panic disorder, musculoskeletal disease, neurological disorder, etc. Then a clueless young psychiatric resident said I was bipolar! He smirked when he delivered his pronouncement (“diagnosis”) even though I showed him the 2003 article in myxedema psychosis. Medical hubris at its worst. I finally sought out an integrative doctor, paying out of pocket, and was immediately given NDT. I felt better in a matter of days! Using the TSH as the Gold Standard and levothyroxine is a disgrace. Thank goodness I educated myself and found a doctor who is up on the latest research. I am saddened, though, to see family and friends with hypothyroid on levo who have hypertension, fatigue, acid reflux, mental illness, high cholesterol and any number of symptoms that can be pinned down to an undertreated hypothyroid. They say, “My doctor says I’m fine.” Really?
Charlie
What does NDT mean
Eva Williams89
I read your story, and I felt scared, hurt, and creepy. Why is this happening to us?
I took painkillers as recommended by a doctor after thyroid surgery… And I became addicted ….. my life has become hell and now I am looking for treatment for addiction as well. Why are licenses so easy to issue? Why mutilate other people’s lives, which are already complicated?
Lillian Rivera
Hi! I am trying to get the right labs ordered with your book and card to be able to ask for a paid consultation with you to see if I finally get optimal. Right now I ordered also the cortisol test to have results for your consultation.
I would like to get the European NDT, and my daughter is there so maybe she could help me with these. I am thinking of the German or Thailand one. I have googled and studying this continuously but cannot find doses equivalent and which one is better.
Suggestions please on those until I get my labs done? Right now I’m am on 1.75 grain and pooling Thanks
Janie Bowthorpe
Most of the Thai brands stopped being made. Tru Thyroid is now out from Thailand.
If you are pooling, you need to treat the cause: https://saliva-cortisol.squarespace.com/
Judy
Janie, I emailed Sriprasit Pharma Co. in Thailand and received an email from them that said the production of Thyroid S was temporarily halted due to restrictions place on them due to Covid 19 and that production would resume in the near future. Of course no date was given. I sure hope this is true.
Jane Perkins
I finally received a batch of Thyroid-s. My only concern is that it tastes different. I’ve only been taking is about two weeks now. I don’t feel anything different so far but YUCK, it’s a terrible taste as I have always taken my Thyroid-s sublingually. I might have to start taking it with a glass of water. I thought I’d get used to it but I’m not.
Has me a little worried about it being a different formula or a scam, but so far so good
Lorie
Janie:
I just ran across this interesting little nugget.
https://www.endocrinologynetwork.com/view/new-analysis-says-no-need-treat-subclinical-hypothyroidism
” Currently, thyroid hormones are recommended for adults with thyroid stimulating hormone (TSH) levels that are greater than 10 mIU/L and for younger patients with low TSH values who are symptomatic or have other indications.
The recommendation was issued as “strong” and applies specifically to adults with subclinical hypothyroidism that is defined as having elevated TSH levels, but normal free T4 (thyroxine) levels.”
*sigh* I thought we had won this battle.
Janie Bowthorpe
Unfortunately, the idiocy is rampant even in 2019.
Terry Howell
I know this is off topic, but I am trying to order Thiroid or Thyroid-S from Thailand. I cannot seem to get any response. Anyone know anything about this? My doctor will give me a script for Armour, but not sure about that. Thanks.
Janie Bowthorpe
The supplies are practically all gone now. They aren’t being made. Armour works. So does T4 and T3. You need to get optimal with the frees on either.
https://stopthethyroidmadness.com/2019/09/23/the-sad-saga-of-where-we-are-today-as-hypothyroid-patients/
https://stopthethyroidmadness.com/optimal
Janie Bowthorpe
They stopped being made. Armour is fine as long as you get those frees optimal. https://stopthethyroidmadness.com/optimal
Teresa
During a routine appointment with a Women’s Health professional I simply asked if they would write my prescription for Nature Throid along with my NHRT prescription. The doctor said she wanted to run labs first and said she thought my dose was too high. I was currently taking 130 mg twice daily. The labs came back that TSH was suppressed so she cut my dose in half. She didn’t reduce gradually just said to only take it once daily. I immediately felt cold in the afternoon and very sluggish. She reran labs 8 weeks later and my TSH had not changed but she did nothing else with my dose. Seems to me she was wanting to raise the TSH by lowering my medication but it did not work. The problem I had with this was why didn’t she let me resume my previous dose. She just left it like it was with me being miserable. She said that I would likely suffer bone loss at too high a dose. When I read articles about bone loss I found the information she was giving me false. I don’t go there anymore.
Janie Bowthorpe
Naturethroid doesn’t work well anymore. https://stopthethyroidmadness.com/2019/09/23/the-sad-saga-of-where-we-are-today-as-hypothyroid-patients/
Kristie Mulreed Blank
I hear you Teresa and am sorry you are going through this. I have hypo and Hashi’s and am on Synthroid and Cytomel and still have severe hypo symptoms. I have had a suppressed TSH for years and my FM doc sent me to Endo to see if I have pituitary and or adrenal issues. Endo immediately told me I am over medicated even though I have no symptoms of it. Quite the opposite! She said I was being harmed and my bones and heart were being damaged (the usual Endo speech) and that I should get off the T3 immediately! No way was I going to do that! I spoke to my FM and said I will have testing for pituitary and adrenals etc. but will NOT change my dose of meds. He supported me (thank God!) and wants to talk about trying Armour. These Endos and other uneducated, uninformed doctors are SO dangerous for us! I am SO grateful for Janie and all her dedication that has helped us to stand up for our health! Praying that you will be able to get on right dose for you and that you will be able to get optimal and feel well. Sending big hugs to you and big hugs to Janie too! 🤗💕
Janie Bowthorpe
Kristie, are your frees optimal?? Read this carefully: https://stopthethyroidmadness.com/optimal
Katy
My endocrinologist basically told me that prescribing HC for my adrenal insufficiency could cost her her job because it’s not approved by the “western medicine” she practices and was taught in college. You would think I was asking for narcotics! Even the non-western-medicine doctor she referred me to wouldn’t prescribe over 10mg HC and thought that the 30mg I was taking was WILDLY dangerous. GIVE ME A BREAK! Good thing I listen to my body and not those who value abiding by the status quo above their patients’ actual health. Huge thanks to STTM for teaching me about HC cream and how to properly dose with it!
Mary
Thank you Jamie from the bottom of my heart. You are a life saver for me and many more. You showed me how to get my life back.
Janie Bowthorpe
I’m so glad, Mary!! 🙂
Sandra Howie
Hi Janie,
I am 57 and thanks to you about 10 years ago I got off synthroid and was VERY hypo for 5 years before getting switched over to erfa’s thyroid and then soon after cortef due to my adrenal saliva test showing me in the very bottom of the range throughout the day and then elevated a bit early evening. I would love to know what dose you were on and for how long. I have been able to wean down on cortef but not get off it yet and want to. I been able to wean down from 40-45 mg a day to now 25 mg but now have osteopenia, dental infections (thanks to Covid am not getting taken care of right away but working it) and am experiencing palpatations that I have recently did a heart halter test, awaiting results on that. I was with a bioidentical MD for most of the time who put me on dessicated and then cortef and he retired and a nurse practitioner took over and along with my family doctor felt I should see an endocrinologist and as suggested also by the Canadian Addison’s Society. I had only phone consult with her due to Covid and she would not take me on until she saw my thyroid cancer records from 1994 and then she did reluctantly saying that she knows it is very very hard to get off Cortef once you are on it but she will work with me to see if she can help me. She mentioned my TSH was suppressed and I said yes, I understand that is what it should be especially if I had thyroid cancer.
Last week I had a very long time infected molar removed and surgeon said there was A LOT of infection and so I am healing from it and have a started root canal that was not finished also due to covid but my endo has said I cannot return to work in retail right now due to covid and says she is erring on side of caution that my immune system maybe suppressed and doesn’t want to risk it but without work, I cannot afford to move ahead with my dental work so am in catch 22.
I am not sure what to think, work wants me to return and our province says I can’t loose my job if I am instructed to stay home due to Covid. The endo said to not lower my cortef yet after the tooth extraction until I feel much better.
I also spoke to a lady at my pharmacy who said that she was on prednisone for many years and gained 120 lbs as well as a pile of symptoms from my same doctor who started me on cortef and she said an endo helped her get off it but she said it was pure hell and was worse than getting off cocaine!!! (not that she knew what that was like).
My endo is aware of the risk of crashing if weaning too fast and says take it very very slow like 1.25 mg for a month at a time.
I would love to know what your thoughts are and also I know you can’t say much without my labs but my last blood work showed I was high on my frees but when I tried to lower I would have my am armpit temperature drop to 96 and even 95.6 once and I felt truly hypo and so I put it back up but of course I fear the palps are from that?
Sorry for long winded info here!!!
Thanks for all you do and thank goodness you knew how to help your husband and yourself. Take care!!!
Janie Bowthorpe
You are very welcome. 🙂 And yes, I’m still working on ways to help my husband. 🙂
Kelly
Im so sorry you’ve been through so much but i want to thank you for sharing all of your invaluable experiences, you have helped so many people. I have learned so much from stop the thyroid madness. Im NOT crazy, it’s NOT in my head and within range is NOT good enough. Well wishes to you Janie. Keep fighting the good fight!
Cindy
I just want to thank you. Big thanks and I hope your husband finds the support he needs to improve his health. He is so fortunate to have you! As am I. I appreciate your efforts on our behalf.
Patricia Wagner
Janie, thank you for sharing your experience and for creating the STTM group and books. I am also amongst those who likely wouldn’t have survived the debilitation of mis-treated hypothyroidism were it not for your efforts and dedication. In spite of endless acts of self-advocacy and trickery in order to get the meds I needed for this, it was only a few months ago that I met an endocrinologist (was she the 70th one I’ve seen or the 69th?) who told me, “you have been misdiagnosed for the past 23 years and have Central Hypothyroidism not Primary Hypothyroidism.” All the doctors that were insisting I reduce my meds in order to bring the TSH up were rendering me brain dead and unable to move due to fatigue. Central Hypo means that I also have Central Hypopituitarism which was caused by a brain stem stroke in 1997. Duh. I’ve told every doctor my history and not one thought to even crack open a book to figure out what impact that stroke might have had on my pituitary, until this latest one found after 23 years of denigration and deprivation with docs. You know that battle we all face to get the active hormone T3, not just the storage hormone T4? In my case, not to receive T3 is a death sentence. Incredible how doctors treat us as if WE’RE the dummies.
Donna Cason
i believe/know that my hashimotos happened due to mold in our cellar.
And partial thyroidectomy….sigh.
Susan Siens
I’m so sorry for all you, I, and so many others have been through, Janie. In January my husband blacked out at work and I correctly diagnosed that he had suffered a hypoglycemic episode. However, he had unfortunately told his employer what had happened and then he got put through the medical mill where NO ONE had a clue, not his PCP, not the PCP’s overseeing doctor, not the cardiologist, not the neurologist, etc, etc, etc. He blacked out again in May, went to the hospital in an ambulance, was sent home in the middle of the night (I kid you not), and because of the stress blacked out again the next day and would have died if I hadn’t saved his life. Still no comprehension by the so-called professionals of what was happening to him though I kept saying hypoglycemia. His sister, who is a Type 1 diabetic, told me there are people who are NOT diabetic who have severe hypoglycemia and must wear 24-hour glucose monitors which will let them know when their blood sugar is getting low. NOT ONE MEDICAL IDIOT he has seen knows anything about this. Fortunately, we found a new PCP through breastcancerchoices.org and he seems more helpful and certainly open to our self-education. He has no problem with prescribing my NP Thyroid and is working with me on improving my iron panel results. And many thanks to you for all the information in your book about low body temperature and iron!!!!!
Lori Miller
I use Keto1000 electrolyte powder to keep my potassium level up. If you’re doing low carb or keto, your electrolytes can drop.
Grace
I cant believe that we are still being treated as if hypothyroidism is a minor problem. I read the articles and information on here regularly and I want to thank you and everyone else for keeping us informed and validating our concerns, as lord knows we have all been dismissed by at least one doctor. Again, a big thank you from me x
Lynne Shrubb
Janie, I love your books and sorry to hear you have developed Hashi’s but at least you are in a learned position to alter this state of health. I have Hashi’s too and I read recently that Leaky Gut can be the precursor to Hashimoto’s Disease (and other autoimmune diseases) and this doesnt surprise me as I have a host of food and chemical intolerances inline with leaky gut and the H word.
Good luck and stay positive – when I’m down I just remind myself that there are worse things to have wrong with me….
Love Lynne
M.P.
Janie, thank you so much for your honesty and hard work. I have said this before and I’ll say it again: I would be dead without STTM. There is no excuse for doctors to not know this information. None. If you figured it out, if other patients figured it out, then there is no excuse for doctors, who get paid a lot of money to do what they do (which is ultimately nothing). Full stop. My experiences mirror yours: begging doctors for years to please help me, and being dismissed and lied to at every turn. I was so sick and almost died. It is only thanks to the information on your site and in your books that I am alive and thriving today.
I fully believe that the poor treatment is in large part due to sexism and racism. Thyroid illnesses disproportionately affect women and minorities. By refusing to help us, doctors are able to keep us out of public spaces. They’re able to ensure that we can’t earn a living or have a career. They force us to stay at home and indoors. There is no way this is a coincidence. Doctors don’t want us to be well. It’s that simple. (Note: I am speaking to this problem overall and fully acknowledge that individual situations are different, and that there are a lot of men with thyroid issues who are also mistreated.)
The other part is money. The medical community makes a lot of money from keeping us sick. They make enormous amounts of money from Synthroid/T4 meds. They know exactly what they’re doing. If doctors and pharmaceutical companies help us, they lose their income.
There are doctors who have morals and ethics, but they are very much in the minority. Most doctors have chosen their profession to make money and for access to vulnerable people. There is a lot of evidence to show that abusive people enter health care because they know they will be believed over the victims. After everything I’ve been through and heard from other patients, I fully believe that most doctors are there to abuse vulnerable people. I’ll never change my mind on this. And in order to find the one doctor who actually sees you as a human being who deserves to live, you have to deal with so many doctors who think you don’t. Many patients just give up asking for medical help. We’re not going to get it, we’re only making rich doctors richer.
I believe in science. I trust science. But doctors don’t. So why should I trust doctors?
Again, thank you for sharing your story and for all your incredible work. You will never know just how many people you’ve helped, all over the world.
Finally, I want to make clear that my experiences above are due to thyroid treatment, not other medical treatment where people are more likely to get help. If it’s something like tetanus shots, vaccinations, setting broken bones or other serious injuries, yes, I will ask for medical help because, as I said, I believe in science. But anything related to the thyroid, women’s health or invisible symptoms, I don’t bother. It’s a waste of time. Doctors won’t believe me, won’t help me, and they’ll just make money from my appointment.
Robert Hutchins
Doctors don’t trust science? What do they trust? That is a very broad, somewhat ignorant comment. I think in spite of what you say, you are the one who does not trust science. Doctors are over worked and we must be our own advocates, but be intelligent about it. My doctor is very open to input about how I should be treated, and will give me any test I ask for regarding my condition. Maybe you use a more open minded doctor.
M.P.
They trust their own prejudices and they trust in making money. If they trusted science and the scientific method, we wouldn’t have the problems we do.
As for being overworked, a large part of that is their own fault for being so resistant to change and making the medical field accessible to only a few. Not to mention that many of the patients they refuse to help are also in health care! I personally know three people who had to stop working in health care because doctors refused to help them. Some doctors are overworked due to their field, but that’s not the case for all of them.
Who said I wasn’t my own advocate? How on earth did you interpret my comment as meaning I didn’t want an open-minded doctor? I wasted a lot of money trying to find someone to help me, and I never got it. I only found help through this site. The majority of doctors only care about money. That’s been my experience in the past 20 years. I’m glad you found an open-minded doctor but so many people haven’t.
Hmm, ignoring what I said, dismissing the facts, making your own assumptions…yep, sounds like a doctor to me!
Susan Siens
I want to say, M.P., that I agree with you. (But as far as tetanus shots go, they are now dangerous as they are given with diphtheria and pertussis vaccines as well, and it caused a huge problem for me as I have a doctor-caused chronic infection.) Doctors can be okay for trauma such as broken bones, etc, but they seemingly have no or little knowledge of chronic conditions, and no overall understanding of physiologic health. I have heard two male nurses state that they believe doctors want as many people as possible to have diabetes as it’s such a money-maker for doctors, and when you begin to comprehend how easy it is to not get diabetes you begin to think maybe the nurses are right.
M.P.
Hi Susan,
Oh, that’s interesting regarding tetanus shots. I haven’t had a problem with them but will look into this. I’m so sorry you’re dealing with a chronic infection, and caused *by* a doctor, no less! That’s awful. I hope you have good people around you to help you when you need it.
And you are so right, it is absolutely frightening how little doctors know. I don’t expect every doctor to know everything about every discipline. But they don’t even have the most basic knowledge, such as if you leave an illness untreated, it will get worse. They always say ‘keep an eye on it and come back if it gets worse’. But the patient is in front of you now and it’s already pretty bad, so do your job!
I really hate believing this because I want to live in a world where I can trust health care professionals. But I can’t. Sadly, I agree with you and think those two nurses are right. Most doctors are in it for the money and power trip. It’s such a waste. If patients and doctors worked together, we could bring about real change. There’s so much wrong in health care right now and it doesn’t have to be that way. We could work together to make it better for everyone, including doctors. But doctors only want us to shut up and keeping making them money.
Wishing you the best for your health journey, I hope you can find a solution soon.
Lucy Dale
Janie if it wasn’t for you & the work you put into STTM, website & books; I would most certainly be either dead or in an asylum still undiagnosed & incorrectly treated.
I have Hashimoto’s (now in remission) but I was left undiagnosed & then incorrectly treated FOR YEARS. I clawed my way out of certain death/asylum, guided by STTM & doing ALL my own advocacy. It’s seriously INSANE & NEGLIGENT the way thyroid patients are mistreated the world over.
Although my Hashi’s is now in remission, I’m left now trying to fix the absolute mess of complications & damage that being left untreated did to me.
Thank you so much for YOU, Janie. Janie you are literally saving lives through STTM & I thank you from the bottom of my heart.
Light, love, hope, strength & good health to you & your family.
Xoxo Lucy.
M.P.
Lucy, congratulations on your success and being in remission! That’s so great to hear. You might have a way to go, but you will get there. I would also be dead without Janie and STTM. What doctors do to us is incredibly cruel, but money matters more to them than human lives. Patients have to work together and take care of each other, because the medical community definitely won’t.
Sending you so much healing energy and strength for your journey! You’ve got this!
Joshua Spitz
Janie, thank you for the years of hard work you have put it in to learn what you have about the thyroid and share it with the world. I was looking for a way to help my fiancé and I read your book and it helped her tremendously. But it sent me down a rabbit hole reading more books and watching documentaries and listening to you tube doctors and learning more about autoimmune disorders and nutrition and optimizing your health. I think what you have taught in your books is absolutely the correct way to treat the Thyroid and not what these uninformed doctors have done for decades. But I couldn’t help wondering as I learned more if there wasn’t a root cause of the thyroid disorder in the first place, and maybe correcting this could help get thyroid patients off medication partly or entirely.
It’s possible that damage to your thyroid is not 100% reversible. We just don’t know yet. But I do believe that wheat is a major contributing factor for most people. Chlorine and Fluoride in our drinking water as well as bromide contains chemicals in certain foods is definitely another factor. And insulin resistance is another. Bottom line, if you are careful about what you eat, you can eliminate these problems and perhaps reverse some of your thyroid damage.
(You don’t have to include this next paragraph in the post). I can’t help but think when I read you have developed Hashimoto’s that it could be your diet. I’m extremely curious about what you eat. Like you, I’m not a doctor, but I have learned enough to be smarter than the average doctor. If you are interested, email me and we can discuss your diet and whether there may be a root cause of your Hashimoto’s that could be corrected. My fiancé had Hashimotis and unfortunately had her thyroid removed years before I ever read your book. I wish I could go back in time and change her diet to see if we could save her thyroid because living without a thyroid can be difficult.
All the best to you,
Joshua Spitz
Donna Whitwell
I’m one of the persons whom fell through the cracks and went down the psychiatric road to hell and have to say I owe my
Life to God by my advocating for myself as I now take NP thyroid and no other psychiatric meds and I’m slowly coming out of the Dark and have gone back to college to start a new career as well I’m blown away at how much time I lost due to being put on different psychiatric meds and only being on T4 as we know what that does not do for Us 🙁 Anyway where to go from here as I will advocate and tell my story and hopefully save life’s 🦋
Susan Siens
Thank you for sharing your story, Donna. My nephew was diagnosed as paranoid schizophrenic and killed himself successfully upon his third try. I wish someone had had the knowledge to check his physiological health as talk therapy seemed to do him absolutely no good and he came from a family with serious hypothyroidism. In the 1960s one psychiatrist cured 75 to 85 percent of his schizophrenic patients with excellent diet and supplementation, in particular niacin which some people seem to need in a larger-than-average dosage.
Michelle Camden
Can you tell me his name? Thanks!
Steve
She may have been referring to Dr. Abram Hoffer
karen boudriault
After 22 yrs on synthroid, and then 7 yrs on levo, I finally tried eco thyro. I dont think I was taking enough and went to new endo with sever hypothyroidism. Endo put me on cytomel, but with my low iron, I had super rapid heart rate. Finally put me on Armour, but started me out on a very low dose. It took about 6-8 months to get me settled on 2 grains. Every 6 weeks she did labs and increased it ever so slowly. I also started taking iron pills and or liquid iron last year. FEB 2nd 2020 I had a triple bypass. I know I was low on T3 for years, but couldnt get anyone to test it or treat it. A nurse said that she didnt think I caused the heart issue with my iron supplementing. I am a retired combat disabled vet. I get 80% VA disability. Following the triple bypass I filed for SSDI and was denied. ppppfffftttt. Some people get SSDI due to alcoholism. I rarely drink. I might have some wine at Thanksgiving. Due to COVID there is no cardiac rehab available for me. Im back to work. Just need to vent. Yes, hashimotos right thyroidectomy in 1989.
Jay
Can I ask how old you are and do you have any other risk factors such as family history of heart disease or high cholesterol or high triglycerides or high blood sugar or high blood pressure in regards to your bypass?
Linda Larson
Thank you a million times over for sharing what you’ve learned. I’m so disappointed that in 2020 we have Dr’s treating us with ancient history medical approaches. The disrespect we are often shown, Hypochondriacs, See a psychiatrist, eat less, to sadly begin a very long and hurtful list.
There ought to be a standard , a exact study to teach these dimwits how to treat thyroid patients.
There couldn’t possibly be a medically sound overall correct universally agreed treatment sound and proven treatment for us.
Help
And you have helped a lot , but we need more!!!
Number 1) get rid of Synthroid !
We are living breathing people and this substance is a lawn chair!
Thank you!