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Endocriminologist, Yes! Will I Thyvive? YES!
Dear Thyroid;
It’s been a little while since I have felt the urgent need to write. I sat in the bottom of that well for so long, I could barely move. My body was all cramped up from sitting in near fetal positions, hugging my knees all that time. Did anyone know that I was ‘missing’? The ghost of me went through the motions every day, so no one really knew that the soul of me was hiding in that dark place, dehydrated and dying, really. I tried and tried to climb out of that well, but I kept falling back, until I almost gave up.
In dire need to help myself, I begged for an appointment to see an endocrinologist. I felt a little better, thinking that I had spoken up, even with my voice weak and hoarse. I was doing something to advocate for myself. The waiting took a month, and while waiting for this splendid appointment that would begin to explore all the hormonal issues that I have had since childhood, I began to look at my history and I put together a timeline of my health that spoke to every symptom that I have been enduring for all these years: weight gain, depression, insomnia, too much hair in places and lack of hair in others, infertility, plantar faciitis, serotonin syndrome, dermographia. The list is endless!
I even showed it to a few persons who have my utmost trust. They agreed that this piece of paper was me in a tight tidy list. How easy it would be for the physician to see exactly where I have been and maybe where I’m headed. Feeling a little positive, I prepared for the endo visit. I didn’t know what to expect, so every nook and cranny of me was clean, shaven, spit shined and polished, with new underwear, just in case…
I have no sense of direction and become lost in just a minute, so it was almost overwhelming trying to get into the huge medical center to find the endo’s office, but I made it. I spoke up and asked for help, and was escorted very pleasantly right to the doctor’s waiting area. How nice these folks are I thought. That certainly makes my nervous stomach feel a little easier.
After a brief intro from a very nice nurse, I waited for my visit with the endocrinologist. My timeline clutched in my hand, I just knew that this would be the day when I finally got some help, some relief from my physical and emotional pain. Wrong. Wrong. Wrong. Well, maybe not.
Enter the endo. She did wash her hands. I was pleased to see that. Opening my chart, she asked, “Why are you here?” I replied by telling her that since I was diagnosed with hypothyroidism a little over a year ago, and been placed on Levothyroxine, I have not felt better. My brain is still confused a lot of the time. I cannot think. There’s no other way to explain that. I have gained so much weight and the scales will not budge. I have been sleeping two hours or less a night and the insomnia is draining and contributing to this depression, for which I cannot tolerate taking any kind of medication. I have adverse reactions to most medications that I take. I told her that I was hoping that we could explore the symptoms and find out why.
It was then that I presented her with the timeline, the piece of paper that would tell her in few words, everything about me. As I went to hand it to her, she told me that she did not want to see it. She stated that she didn’t care what it said. She had the facts in front of her and the facts stated that my TSH was fine and that was all she cared to know.
I swallowed hard and became very quiet. She did approach me and felt my neck. She even performed an ultrasound. “Your thyroid is smaller, and even smaller on one side, but it has some function left. You’re fine. You are definitely hypothyroid, but you’re fine. You’re just fat and you need to sleep”.
The quiet and the look on my face must have said a mouthful, because she went on to say “What?! You apparently don’t like what I’m saying. What more do you want me to say?!”
I knew that tears were not far behind, but I was determined not to let this person see me cry, so I squeaked out, “I begged to see you because your credentials say that you specialize in metabolism, thyroid and endocrine disorders, which I have had all my life. Why do I not tolerate medications, especially SSRI’s for depression? Why do I have adverse reactions to most medications, especially since last year? Why can I not lose weight? I seem to have minimal to no metabolism”
She just shrugged her shoulders and said, “I don’t know. Some people can’t take meds. Like I said, you’re just fat and you need to sleep. Lose some weight and take some sleeping pills and you’ll feel better”.
(At that moment, if I had had some sleeping pills, well, I shudder now, thinking about what I thought.)
Then, she told me, “Don’t go out by the front desk when you leave, use the back door”.
What the hell?!
Did she think that I was going to cry and did not want people to see me?! Oh, I would cry, many tears, but not in front of her, not in that office. I did leave by the back door, and found the nice persons who had helped me, and nodded a good bye thank you to them, knowing that I would never, ever, ever return. I was pissed. Overwhelmed, and very, very pissed.
I may have said this phrase to you before, oh thyroid, and I will probably say it again, but it has remained with me for years. “When reality gives you a kick in the ass, move it before it kicks you again”.
It was then that I realized that I was going to have to help myself. What could I do to have some control over my emotional pain, sleeplessness and physical ailments?
I had been doing some research on vitamins and supplements for depression, since I cannot take the prescription medications. I decided to try on my own, a course of vitamin D3 and some calcium, magnesium and zinc. I decided to try melatonin to see if it would help me sleep. Those two, along with some omega 3 oils, would be my 30 days free trial to see if I could help myself to feel better.
A few days into it, I noticed that while I fell asleep, and awoke a couple of hours later, it was easier to go back to sleep and I began sleeping four to six hours a night. WOW! That was amazing, not to mention I began having dreams that I could recall. Chalk one up for the melatonin. The fact that I was beginning to sleep more helps my depression as well, I am sure.
But, I also noticed that after a couple of weeks on the vitamin ‘therapy’, I began to feel a little lighter. I even laughed one day. It was a hearty laugh. Only a person with depression would know a laugh so noticeable to self, because laughter does not come easily anymore.
I have just finished a course of physical therapy for the plantar faciitis, and even taught an in-service at work that I entitled, “Happy Feet”, to help my compadres and their tired aching feet feel better.
Life is not perfect by any means. I have not entirely climbed out of the well, but I’ve climbed closer to the top, finding sure footing and safe holds for my hands. I have been here, sharing my words and thoughts, and when I am hiding in the well, I hear people calling my name. Trying to find me. Ready to pull me to safety, should I start to fall back.
My weight? It’s still there. I don’t like what I see in the mirror, but I am more accepting of me as I am right now. And, that’s a step up in the right direction, out of that well.
(Bio) Kathy Taylor, I’m 54, overweight, yes, but taking my vitamins and beginning to smile now. Smiling at others and having conversations and wearing colors. Imagine that!
Tags: affects of thyroid disorders, hypothyroidism issues, hypothyroidism support, thyroid literary support, thyroid symptoms
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16 Responses to “Endocriminologist, Yes! Will I Thyvive? YES!”
Leave a Reply to amy
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Wow.
Some “doctor”. Why are they so STUCK on the stupid numbers? And how can they be so unrelentingly cruel?
What you dealt with must have been so frustrating, but it’s great to hear you are doing better, day by day. Hang in there!
Cheers of joy for you on not buckling under when the doctor kicked you in the knees. Congratulations on trying a positive step, and finding that it’s helping. I hope that you can continue to find other resources to move you forward as you begin to feel better.
I despise the medical response of “the number is good, so there is no problem”. It’s worse than just treating symptoms with no curiosity as to where they’re coming from, and about as bad as “you’re not sick, you’re just not well”.
I’ve been dealing with similar medical professional responses, have gotten sick of it, and have started shopping around for new doctors. Finally hit on an endocrinologist who admitted that there was no way to figure out my proper thyroid levels until my vitamin D was somewhere near normal; who recommended that I see an immunologist – and gave me the name of the best one she could think of. May possibly have hit on a gynocologist who is more about treating people than symptoms, and who has referred me to a naturopath who can work alongside my acupuncturist.
They are out there, but they seem to be few and far between. I think the hardest thing for me to accept is that I have to be the one to take charge of my care – no one else is going to do it. No doctor is going to call and check on me to see if I’m better. And, if I’m not getting reasonable answers from a particular professional, that it’s OK to say goodbye to one, try another, and keep trying until you hit against someone who actually listens, tests, and admits that there are not simple answers to any question of metabolism, hormones, and quality of life.
Kathy,
Way to educate yourself girl! I am proud of you! Keep on truckin’. I had the same types of experiences that you had visiting dumb doctors. I found myself a good holistic doc. Know What? He prescribed to me the exact vitamins you are taking! I feel a ton better – but realized I can’t take my Vitamin D at night. It makes me wake up way to early!
Great letter Kathy. I’m glad you are feeling better. I’m not a doctor but I am concerned about your taking Vit. D. Please be careful. Vitamin D can be toxic in high amounts. Just alert yourself to Vit D toxicity symptoms. I wouldn’t want you to get worse with trying to make yourself better.
Kathy, I know how you feel. Find a natural dr-mine made me feel so much better. Keep looking for a good endo. I went to one that told me that my thyroid had nothing to do with my weight gain and I just needed to go on a diet or have weight loss surgery. I never went back. I finally found one that diagnosed me with PCOS and Hashimoto’s. PCOS explained a lot for me.
Don’t give up. If you can find a good endo, it will make up for the bad one. I couldn’t believe a person could be so rude and uncaring to another person until it happened to me.
I’m so glad you are starting to feel better. Keep being positive-it will get better and you have all of our support!
Joyce
Thank you so much for your support! I just re-read my letter and burst into tears. I am doing a lot of that these days, but it really is OK. I’m just so glad to be able to feel something, anything. Each day it is getting easier to breathe, smile, sleep.. and I like that..I like it a lot. You are all awesome here. Never forget that. xo
As to the vitamin D toxicity thing, I want to point out two things.
The first, and most important, is this: http://www.vitamindcouncil.org/vitaminDToxicity.shtml
The second is that my endocrinologist, when I asked what a good dose to take was, said that the maximum (presciption) dose available was something like 50,000 IU per capsule. She said that 4,000 IU was a good daily dose for me to recover stores. She said that lower doses work just fine too, it just takes longer to refill the stores that your body needs to use.
The big problem with high doses of Cholecalciferol (as stated in the link I’ve posted – under “Hypersensitivity, not toxicity”) is that it can lead to problems with calcium regulation.
oH, Kathy—for I minute I thought I’d written that letter and then panicked when I couldn’t remember ever writing it–and that’s bcuz I didn’t write it— but i know all this crap way too well…so sorry you ,and me, and everyone else has gone thru this crap-i’m beginning to think that a lot of endos became endos bcuz they didn’t qualify for any other specialty. The predominant requirement for specializing in endocrinology seems to be
a shitty personality with a strong propensity to be rude and unfeeling to your patients-unless you’re diabetic and then they love you.
Kathy, so sorry for your crappy experience! I am glad that you are taking good vits and feeling better! I have personally never been to an endo. I am blessed with a natural dr who specializes in thyroid(and a few other things). But before her I did see a kinda crappy n dr. Good job researching! Sometimes we have to take matters into our own hand which sucks because the dr’s are supposed to be there for us! Keep looking and you will find a good dr. And hopefully soon! Amy
whoa.
and i thought my endo who saw me once in two years sucked.
i used melatonin for years, finally getting to the point where it didn’t work anymore…so, i have gone to otc sleep aids, and that is good enough for me.
be strong, and, i don’t agree with bee…there are some who do care. my new endo is a complete doll, and is doing workups and scans and cares… i can’t say enough good things about her.
Kathy, so sorry you had to endure such ignorance. We are paying for them to provide a service. What makes them think they can treat us like we are not even human. It’s a disgrace.
I am so proud of you Kathy. I know how disparing it can be. I cannot tolerate any of those meds either. I don’t know why they don’t recognize it’s related to the thyroid. I’m sure they hear this all the time. I even went to an allergist/immunololgist about all my intolerances/allergies, and what a waste of time of that was.
I hope you are still improving.
Lori
XOX
Kathy,
How “medical professionals” maintain that label when they act anything BUT professional is beyond me.
I wish we could somehow “vote with our feet”–if these awful people had no patients then they would get better–just like any other service industry.
I’m very sorry!
Dear Kathy,
I am so sorry you had to go through all that with the endo. unfortunately so many of us go through the same thing with these so called specialists.
In the end I ditched my endo entirely and now my gp deals with me…. I told him what I learned and he checked it out then we agreed to try natural thyroid.
Recently with the problems getting Armour I had a change to Nature-Throid, it just did not work for me. My pharmacist did loads of searching about and found Erfa thyroid available from Canada. Being in the UK we have real problems getting any natural thyroid hormones, but along with my gp, she managed to get me the Erfa. I am having to adjust my dose again but I am not nearly as bad as I used to be before the natural replacement.
I also take a lot of supplements because my adrenal supply was virtually non existant. Hold in there girl and all the best. x
So she said “You are hypothyroid but you are fine” I don’t quite understand that. You can be one or the other, not both…….did she tell you what your numbers actually were? The right number for one person may not be the right number for someone else.
I complained about all this to my endo also and she suggested vitamin D, also did a blood test for my vitamin D and said it was a bit low. I take it October thru May, not in the summer. She also suggested I experiment with my synthroid in small doses, which I’ve done.
I have had many of the same symptoms you have had although currently they are mostly okay. Weight loss was a bitch but I somehow did it.
Glad to hear something is working. Who knows, maybe the endo was right, your thryoid is okay, and there is something else wrong. At least that’s what the success of the supplements might indicate.
Zari
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Kathy, we can all agree — what you’ve written here and what you experienced is absolutely sickening and infuriating. People like that deserve to lose their license. What the fuck was she thinking? You know what was on her mind — money money money. I have a knot in my stomach FOR you. Simply cannot imagine the rage, anger, and sadness coursing through your body at that moment.
Thanks everyone for supporting Kathy! She deserves it so much!