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Mismanagement, Misogyny, and Misdirection
I just signed into Dear Thyroid as “Phoenix.” I chose this name because I feel like a phoenix rising from the ashes of thyroid disease after over a decade of ups and downs. I am so happy that you give people with thyroid disease a voice, and not only a voice, but a place to rant because within those rants is a lot of information which might help us all. After all, thyroid is not a civil disease. Why treat it so?
I wrote the letter “Dear Doctor” posted on Mary Shomon’s site long ago about the head of endocrinology at a university, who told me I had to leave his office if I chose to continue to take Armour Thyroid.
I had a nodule. If I had had cancer then he would not have treated me if I continued to take Armour Thyroid, which I find disgraceful. It was my first clue to the mismanagement, monetization, and to some degree the misogyny of this disease.
What drew my attention to your site is a nurse’s story about the removal of her thyroid in error at Duke. I don’t have thyroid cancer but the threat is always there so her sharing that experience meant a lot to me. I might be in her position one day, and believe me her comments made me think.
She has street cred with me because she is a nurse who knows the system, and she wasn’t taking this error sitting down but despite her savvy, she seemed stymied by her efforts to break through society’s acceptance of the “white wall” of denial, monetization, mismanagement, and again possibly to some degree misogyny, and a possible lack of caring about a patient’s quality of life in the event surgery goes wrong, which adds up to gross mismanagement of thyroid illness, which is the real “Gold Standard.”
I applaud her.
The nurse also mentioned a concept which I was unaware of despite how much I read and research: thyroid transplants in Japan.
Why not? My sister has had a kidney transplant for twenty years.
Transplantation has come a long way. And, with medical tourism to a reputable foreign hospital, this might be an option for some people who are very sick who seem untreatable, to get on with a good life, and do an end run around the doctors who are frustrated, can’t help, or those who send women to therapists because they don’t have answers, or from misogyny in action in too many cases. After all, myexedema, the extreme form of this disease kills. Borderline stuff destroys marriages and blights/shortens lives.
Another thing progressive doctors are not talking about much but are often finding is the connection between the thyroid and the adrenal glands with either low or high cortisol. They are afraid to talk about it.
I was told that I would have to take thyroid replacement for the rest of my life. I was told that my thyroid was mostly destroyed. I was told lots of things which were not true. I found an integrative medicine physician when I finally hit bottom who told me that nearly 50% of thyroid patients really had an adrenal problem, and the thyroid problem is secondary.
In my case that was correct.
My adrenal/cortisol level was so low that a fingernail scratch across my stomach made white streaks instead of red welts, there were bronze patches on my calves, minimal stress would cause my hands to shake, and I’d shake inside. I could not get out of bed before noon, and regardless of the dose of thyroid replacement I got sicker.
The Armour dose that had worked beautifully for so many years was like the enemy. I would curl up in fetal position, a vegetable when I reduced the medication. When I raised the dose I could get out of bed but my heart pounded and my blood pressure soared to a dangerous level, and I overheated.
Now, I’m much saner, happier, and healthier taking 11/2 grains instead of 31/2 grains desiccated hormone. Quite a drop. The adrenal drain happened over five years of intense stress, and the healing happened over a year’s time, and is ongoing.
One of the most effective hormones that I took was 75 milligrams of micronized pregnenolone morning and noon, and add to that all the sleep I could manage. It was not easy because as my adrenals healed my need for thyroid hormone dropped, and when the need dropped, I got sick until I could reduce the thyroid hormone, so I could reach yet another lower rung on my thyroid dosage, and I would feel better until I healed some more and my thyroid dropped once again. But lower the dose did go, and higher the cortisol levels did rise toward normal, and the better I felt. It is called “stairstepping.”
Yet another point, that bothers me is when I read posts on thyroid sites, I see the expectation that the “right” endocrinologist will save them. It is a rare endo who sees through this disease. Some do. From the women I’ve known and read about, it is the osteopath or integrated medicine physician or forward thinking physician who isn’t locked into a last century paradigm who get to the bottom of these things best.
Although, I’ve found a doctor who does saliva testing, who’s going in the same direction, and on the same journey I’m going, I’ve also found a personal resource I can’t do without now, it’s the Canary Club, a buyer’s club for saliva tests for cortisol taken four times a day, or a blood spot for a thyroid panel, or stand alone tests with or without the other hormones, or a combo test to see how all the hormones work together, because in the end the best resource I’ve found is me.
With Canary Club, I don’t need a doctor’s office call or a prescription, and I collect the test stats and the digital report online, and get a written report, too. If I want I can follow up with a physician who specializes in thyroid disease for an affordable fee.
Or if I don’t want I don’t. The Canary Club was organized by people who were like canaries in a coal mine, the first to be affected. They wanted economical prices for tests that make sense for them. They wanted to help other canaries get well.
One thing I’d like to mention. There is a male/female/age bias with thyroid disease. Only middle-aged women get it. Right? Men get thyroid disease. Young women, increasingly get thyroid disease. My brother has it, my son-in-law has it, my thirty-two-year old daughter has it, my grandmother died with it, and on and on.
I understand that women have hormonal issues that lead doctors to believe that fewer men than women might have it, but with all the toxins in the work place I believe that far too many men have this disease, and aren’t tested for it or sadly, not treated for it, because of the assumption that it’s a middle-aged woman’s disease by physicians. And, don’t forget about heredity and sometimes birth control pills, which was a whole other story for my daughter.
I’m no longer taking Armour tablets. I’m taking desiccated thyroid hormone that has been compounded into capsules; it seems to hold my temperature better and work faster. I still think Armour Thyroid tablets are amazing, and a far better choice than synthetic thyroid for many people. Will I ever live without some thyroid hormone supplementation? Maybe maybe not. I did not think that I would ever lower my thyroid below three grains but it is real. We will see.
I started writing this email just to thank you but all this came out onto the page. Again, thank you so very much. And, bravo to the nurse whose name I did not get, and to the article I could not locate again.
And double bravo to you who founded this site who were brave enough to let it all hang out, even to a venter like me.
Shirley Grose
Diagnosed with Thyroid disease 1997
BIO: Shirley Grose, publishing consultant, from WV, living in Sebastian, Fla. Diagnosed with thyroid disease in 1987. Wrote a dear thyroid letter titled “Dear Doctor” that is published on Mary Shomon’s thyroid site, and in Sanford Siegal, D.O., M.D book Is “Your Thyroid Making You Fat.” Email: shirley.publish@gmail.com. Username Phoenix.
Tags: Dear Thyroid Community, Dear Thyroid Letters, letters written by thyroid patients, medical neglect, Mismanagement Misogyny and Misdirection, questions about thyroid treatment, thyroid nodules, thyroid patient mistreatment
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18 Responses to “Mismanagement, Misogyny, and Misdirection”
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Thank you Shirley. I’m so glad this came on the page and I tend to agree with everything you said. Since I have chosen to wear my disease on my sleeve I have learned that men and young people suffer from this disease. I also know that an endo is not going to take them time to fix all of me, it’s just not happening. I have an internist know that thinks like we do. It took me years to face head on that I had to be in charge of my health and do the work to get to where I needed to be. Dear thyroid taught me that if I knew it then I needed to do something about it. I am forever grateful to each and everyone of you. Good luck lovely lady. Thank you for your informative and inspirational letter.
Donna xo
Donna,
I’ve thought about wearing “thyroid” on my sleeve, let’s say of a T-shirt. Something catchy to raise awareness. It would be a good contest to see who designs the best T-shirt decoration. Good you found someone to help you. Yes, you are one of the lucky ones who decided to take charge of your life. Thank you for your comment on my story “Mismangement….” Shirley
Thank you! Thank you! Thank you! I needed this letter today more than you will ever know. I was feeling very hopeless and now I feel that there is hope. I have a very long story about birth control pills that I will not go into now, but to hear someone else that has had them mess with their thyroid gives me more confidence to bring that up with my doctor too. I really think I have an adrenal problem but am to scared to bring it up to my doctor, because I don’t know enough about the tests involved and the cost associated with it. I am always worried about cost even with insurance it is hard to make it when you are single and have to provide everything for myself. Back to my point…Shirley, you have given me a push in the right direction and I am amazed at your strength.
Linda
Linda,
You are the person I was writing for, that person who needed to know it isn’t a walk-in-the-park but they can do it, and there is a way out of this, back to health. It may not be the traditional way but it’s a healthy way. And you are in the driver’s seat.
Write your story about birth control; it is very, very important. It helps people like me, who had a daughter who was very sick, with no help from the medical world. I went researching for my 31 year old daughter when she became very ill. She was having chest pain, severe pain behind her eye, she was having symptoms that some doctor should have stopped and said what is going on here but none did.
At that time young women 17-18 years old were dying from Yaz birth control, and there was a lawsuit against the company. When I read some of the things women said about the birth control I had a pretty good guess about what was making her extremely sick. It was ONLY from young women and mothers that I found helpful comments and information, not from doctors.
The last doctor she talked with said to her in not so nice terms to see a counselor. She did. Her emotions were messed up. She was ready to collapse.
We did some saliva tests at Canary Club online. The tests showed she had high estrogen, her progesterone was suppressed by the Yaz, her cortisol was off, and after talking to Dr. Shames during a consultation, she got a doctor here to double her thyroid medication.
She stopped taking the Yaz birth control pills. She took 10 days off work, slept most of the 24 hour period during those days. It took a month for her to get back on her feet. She had a blood shot eye toward the end of her time on Yaz. Was she heading for a heart attack or was she heading for stroke at 31? I think so. And, I love my daughter more than life. She’s intelligent, and fun loving. A stroke or heart attack at 31 because of corporate malfeasance is not what I wanted for her life.
It says in the Yaz information that anyone with adrenal or thyroid disease should not use the product. My daughter took this product to help with her periods, which were okay for a couple months, then they became harsher and worse.
She’s off any birth control, now. I know that’s not possible for everyone but you do have choices about what birth control you use. She’s much better now. Her periods are much better now. She changed a lot of things in her life like the foods she ate, the amount of rest she got, and lots of things, but she’s stronger and feels better than she has in years. So, for goodness sake if you have something to say about birth control let it fly. It will most likely help someone like yourself whom you will never meet, but will be as great full as I was when my daughter was really sick.
Shirley
thyroid transpalnts? who’d gave thought it possible? I believe I read your letter on M. Shomon’s site yrs ago . You write succinctly and have included many talking points for us to ponder. Thanks for you , Ms. Shirley
Bee,
Thank you for the compliment on my writing. It came at a good time. The transplant idea I think is good for thinking outside the box but like Katie, I think that cell renewal might offer a cure for some of us. For others, like the nurse who had her thyroid taken out by mistake or people who have had their thyroid removed because of cancer or accident, this might one day offer them a near normal life.
Best of luck to you.
Shirley
whoops!the word gave in my 1st line should be have and transpalnts is transplants- i was typing with my toes again
This is such an excellent post. Thank you for sharing your thoughts and some of your experiences. Just the other day, I told my mother to dump her endo; for years, Mom was getting tested due to what sounded to me like increasing thyroid problems, yet she was always told “You’re fine, the numbers are good” only to find (thanks to another doctor) that she had malignant thyroid cancer. And do you know what the endo said upon hearing this news? “Well, your numbers say there’s nothing wrong with your thyroid.” God help us.
You also make excellent points about the changing face of thyroid disease. I was only a few years away from graduating from college when diagnosed myself, hardly ‘middle aged’. It’s unfortunate, to say the VERY least, that doctors either don’t have the time or in some cases cannot be bothered to at least read the latest thyroid-related headlines, to say nothing of filing away the studies & articles for later reading or reference. Some do their best, but many of them…Mismanagement & misdirection are a great way to put it.
Should I even get into the annoying “Low T” spots advertising a prescription for middle-aged men? When women, even young ones, are told “you’re getting older, get used to it” when the symptoms all point to thyroid or other autoimmune problems? Sigh.
Thank you so much for sharing your successes and disappointments!!!!
I never ever heard anyone talk about white lines from a fingernail on the skin…..I had that so many, many years ago I thought I dreamed it! I was so weird. I do have the craziest dreams they could be movies of horror or bazzar.
I too have had the strangest Doctor visits. Did you ever go to one that had you strip down and study your whole body. I never went back, University Madison Wis. I had a Dr. once tell me if my Endo measured my blood levels on a trip to a specialist say he would not continue to prescribe my thyroid medicine! I had another Dr.say she didn’t treat thyroid, a blank look on her face, I thought I will she know what is and isn’t related to thyroid. ????? I found information about feet, rarely happening but at that time my feet would not flex when I walked. They felt “locked” and I would shuffle along. So many complaints! I have never found any MD who was willing to look at a list of all my issues. I even had a Dr. say, I can’t have you tell me these all together, you will have to make seperate appointments. When I type I often see I have misplaced the letters in a word, or leave them out altogether.???
I have been told I have Graves. I had a goiter and had raditation. Some eye issues but not the worst kind. Panic attacks, heart, weightloss and gain. Rollercoaster ride. I have worked hard to minimize the “look” of sick. I do pretty well….not too many can tell anymore. But then family won’t believe me that I am sick forever and still have bad days. My daughter had twin girls 4 1/2 years ago, when they were small I was afraid to hold them becauses my arms were so weak and my legs so wobbly. My daughter was mad. She didn’t believe I couldn’t help more , but I couldn’t.
Anyway these sharing stories might zero in on common issues that we can help one another…So very happy you wrote Thank you, xxxxxxxxLinny
Great insights, thanks for sharing.
Thank you so much for posting this. I knew next to nothing about thyroids 3 months ago. Being a naturally inquisitive “big picture” thinker, I started a crash-course on them when my nurse practitioner referred me to an endo because my tsh had been suppressed for 2 years, in addition to a host of other nagging problems: insomnia, major depression, irritability, panic attacks, swollen lymph nodes,hair loss, etc. Had an ultrasound, then a radioactive iodine scan (which showed 2 large nodules of equal size, 1 hot and 1 cold) and am now waiting for next Wednesday’s biopsy. Even after seeing all of these techs and docs and logging about a gazillion hours of research, I don’t feel like anyone understands what is going on with my big picture except the people on this site. It seems to me that the thyroidectomy is the new lobotomy. Physicians seem to think that it can be easily replaced with a synthetic pill, and voila, problem solved. It wasn’t all that many years ago that scooping out the frontal lobe was an acceptable treatment for mental illness. When are our Western docs gonna realize that systems are more than the sum of their parts?
Shirley:
Thyroid disease? So, that’s what it is, huh?
Thanks for you thoughts, opinions and ideas. While reading I remembered that I saw a story recently about the possibility of using stem cells to “restart” the thyroid. Has anyone else heard anything about this?
Hey Hannah;
I have been doing some research on this. There is a lot of evidence out there regarding stem cell research and a cure for autoimmune diseases. But nothing conclusive, though I am quite fascinated, intrigued and eager to learn as much about it as possible.
Katie
Hi Shirley;
Thanks so much for writing this and sharing it with us.
Lots of food for thought.
Katie
Awesome letter! I have high cortisol and am starting to wonder if the two are connected…..I am seriously considering seeing a naturopathic doctor, but it’s a ways away and I hate the idea of a far drive. But might be worth the trouble.
Thank you all for your kind comments about my letter “Mismanagement, Misogyny, and Misdirection.” High and low cortisol are often culprits that aren’t addressed that may cause thyroid hormone resistance. Katie mentioned stem cell treatment for autoimmune thyroid disease, and I agree I think there will be a breakthrough with cell renewal using our own cells. And the comment about the “thyroidectomy is the new lobotomy” might be on target. Every time I read this site I find something interesting and new. Shirley
Shirley:
Thanks much for attempting to explain your problems. I saw someone on Judge Judy with similar symptoms and your insights made me wonder (while Judge Judy was calling her a lazy, conniving parasite) if in fact she was suffering from thyroid disease, too.