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.
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: firstname.lastname@example.org. 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