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It’s a Lot Like Panning for Gold
(Written by Theresa, Graves’ disease patient, Hyperthyroidism, Thyroidectomy, Dear Thyroid Letter)
Dear Thyroid;
The best decision I am making is to fire my endo and go to a ND/MD this week. I know she treats with natural thyroids instead of synthetic and I am hoping she believes in treating the whole body to fix thyroid levels….
I started taking vitamins and supplements and I am determined to stick to it so I can get my cortisol, Vitamin D, Vitamin B’s and iron healthy. Last week I went through my refrigerator and pantry and threw out all processed and high sugar foods, you only see lots of high protein low sugar options and fresh fruits, vegetables and meats.
You see I’ve had a five-year Graves’ Disease battle and total thyroid removal in 2009, and I have lots of regrets. I know now that I probably had a thyroid problem since my 20’s if not sooner. I do know I had my thyroid checked three or four times in 25 years because I was always tired, jittery, light headed. I had several episodes of what was considered to be panic attacks over the years (which I now know was caused by a hyperthyroid). Each time was so scary, I’d break out in a sweat, my stomach would get nauseous and my pulse and heart would start racing. I was sure I was going to die of a heart attack, and after each one I would be wiped out for days.
It wasn’t until a yearly female examination by my GP that I mentioned I just wasn’t feeling well and my hands were shaky. He didn’t really seem concerned about that, but when I told him my hair was falling out he suggested we do some thyroid testing. and it came back with what he suspected was Graves’. I did the iodine uptake and it was off the charts, and so began my five-year descent to removal.
I suppressed my thyroid with methimazole and it was impossible to stabilize, every four to eight weeks there was a med adjustment. Four years in, we thought I was in remission, then it raised its ugly head three months later. I noticed my nodules were getting bigger and mentioned it to my endo, and she decided after four years to do an ultrasound to check the sizes on them. Lo and behold, they had grown instead of shrunk with her four years of suppression. I was then given the choice of iodine or remove, and I decided to remove them. In May 2009, I had surgery and was immediately put on .125 mg Levothyroxine, then a few weeks later my dosage was upped to .150 mg and she told me not to come back or test levels for six months.
And then my spiral to hell began.
My thyroid was removed in May and the first three months I was all right, I felt better than before my thyroid was removed. I was tired but I thought that was because I was recovering from surgery. But I was getting more and more tired, and my hair was falling out by the handful.
I had always had very heavy periods but after surgery my periods got much worse, I had several days of hemorrhaging and I went to the emergency room and after a ultrasound the doc said my uterus was enlarged and to see my regular doc the following week. I did see my gyno and I had to have a DNC the week after and several large, non-cancerous fibrocystic cysts were found. In November, several non-cancerous fibrocystic cysts were found in my breasts.
During my emergency room treatment the doctor ran my thyroid levels because it had been so recently removed. He told me that my TSH levels had significantly changed from my previous lab test and I should notify my endo, because of the thyroid cancer my TSH should be adjusted lower. I called my endo and told her about the thyroid level changes and she refused to make med adjustments.
I continued to feel worse and worse, I couldn’t hardly pick my head off the pillow in the morning and drag myself to my full time job in customer service. I had bouts of extreme rage and depression. I’d cry all the time and have feelings of worthlessness.
I had an open order for labs so for the next two months I went in and had my blood tested each month because I was feeling awful and I was just sure my endo would see that when she got the tests back. Each time I’d call and ask her if my levels had changed, and could I have a med adjustment, but each time she said no, and told me to wait my six months and then come in at that time and we’d discuss them. I knew that something was off; I was feeling awful and she wouldn’t let me come in. She didn’t ask for any other tests to be run until after that six month timeframe.
If only I had educated myself about thyroids, adrenals and sex hormones sooner, I may have won the Graves’ battle. Instead, now I’ll be considered sick all my life. Not what my endo told me when she convinced me to take it out. One pill a day and you will be great, so much easier to treat than Graves’ she said. Yes, easier for her, as she never checked anything but T-4 the entire time, of course I was fine in her eyes,. Liar, Liar, Liar!
Mind over matter has got to work, because I just can’t stay on the same road any longer. Thank goodness I’m a little vain because it seems I could have felt like crap for life, but the hair is getting so thin. It was like, my goodness, I can do something about this and stop putting my head in the sand and accepting it.
Gone is the T-4 only doctor, and in with knowledge and healing…
============================================================
The above was something I wrote up a week before I went to my new doc.
Last week I went to my new doctor prepared with the following introduction letter. She kindly read it and everything I brought to point, she agreed with it all. She also told me that the DNC that I had in September has now thrown me into full-blown menopause, as my body thinks I had a hysterectomy.
I told her I could hug her, and left with natural hormones, biogenetic estrogen/progesterone and adrenal gland support meds as well as Vitamin D-3, evening primrose, multivitamins, fish oil, DHEA and iron. I have read when you take DHEA you should also take Vitamin E and melatonin so I am going to start those as well.
I hit the mother lode with her and I appreciate her. I have never been a vitamin taker, but after five years of prescriptions for my thyroid, I have learned it is okay to take the pills you need. Educate, learn and never stop searching for answers and never, never, let a doctor make you think you do not know what you feel. No one else knows you better than you.
Below is the letter I wrote and took to my new doctor. It really worked to explain the path I came from and the path I want to take in the future. I got the suggestion from another thyroid blog or web site, I think one of Mary Shomons. Feel free to copy it and tweak it for your next visit to your doctor. If they do not know the tests you are requesting, that is your sign to jump ship and run to find someone that does.
“Be good to yourself and demand good treatment is what I say to all.
Best wishes to you all.
Theresa Budke
**************************************************************
Dear Dr.________ ,
I am 52-year old female; I have four children, the first birth when I was 15. I was diagnosed with Graves’ Disease approximately six years ago. I had my thyroid removed May 7, 2009, because of the inability to manage it on suppression drugs and I had several nodules that were continuing to grow. My endocrinologist Dr Carroll suggested RIA or removal. Upon removal of my thyroid a small nodule measuring 0.6 centimeter of papillary cancer was found. It was determined because it was small, and surgery had successfully removed the gland, that RIA would not be necessary, it was felt that the cancer could be managed with TSH suppression and Thyroglobulin testing for monitoring. I am currently on .15MG of Levothyroxine daily.
Since I have been on Levothyroxine I continue to have the following hypothyroid symptoms: Depression,(I am sad all the time and I cry very easy), Low Stamina, Rising Cholesterol, Hard Stoles and Constipation, Dry, Brittle Hair and Nails, Hair loss with no regrowth, Forgetfulness, Foggy and Lack of Concentration. No Sex Drive, Weight Gain, Exhaustion, Complete Lack of Motivation. I am extremely crabby and irritable. I have Joint pain and Carpal Tunnel symptoms. I had several large fibrous cysts removed from my Uterus in September and have Fibrocystic Breasts. (Until my periods stopped five months ago, I had extremely heavy and painful periods).
I would like to try Natural Thyroid Hormones such as Armour, Westhyroid or Naturethyroid to see if I respond to the medication better than T-4 only, in hopes to alleviate many of my symptoms listed above. I also have concerns that I may have Adrenal Fatigue as many symptoms of Hypo Thyroid and Adrenal Fatigue are much alike. I’d like to test my adrenals with a 24-hour adrenal saliva test, which tests my cortisol at four different times a day. This will help rule out any issues I might have due to low cortisol.
I have brought with me lab results for Estrogen, Testosterone and Progesterone, Ferritin and others for you to analyze. I would like to integrate vitamins and supplements into my lifestyle such as Vitamin D-3, Iodine, B-12, Fish Oils and their importance to healthy Adrenal and Thyroid levels.
As I do not have a thyroid, I am sure you could recommend my conversion starting dosage equivalent to my current dosage of Levothyroxine. It is my understanding that after 1-2 weeks on a starting dose, the dosage is raised every few weeks according to the elimination of symptoms, and NOT by the TSH range, since the TSH is simply a pituitary hormone, and thus doesn’t accurately measure thyroid levels with the addition of oral thyroid hormones. Once a person gets up to approx. 2-3 grains, they hold each dose about 4-5 weeks to allow the T4 to build in their system, and get more accurate symptom & lab results. As far as labs, most prefer to keep track of their free T3 and free T4. Patients on Armour are stating that when they completely rid themselves of symptoms, they have a free T3 towards the top of the range, a mid-range free T4, and a suppressed TSH, with no hyper symptoms whatsoever.
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19 Responses to “It’s a Lot Like Panning for Gold”
Leave a Reply to Christine
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Your new Dr sounds wonderful. I hope to someday find a Dr that will listen and treat me as a whole person and not just some lab values. I feel that so many of my current problems are related but none of my Dr’s are willing to step beyond their own scope of specialty to try and connect the dots. Way to go on being so proactive and taking control of your life for you.
*hug*
Thank you for sharing your story and I hope you find relief with your new doctor.
Theresa, thank you so much for sharing your story. You show us that it’s OK to question doctors and it’s OK to fire and hire new doctors. Thank you for your good example!
xo,
Joanna
Sounds like you’ve got a great new doctor!
I love this idea of writing a letter to your doctor. I know that when I’m in my Endo’s office it feels like everything happens so fast and there’s a lot of information being passed back and forth. I forget things I want to tell her or miss things she’s telling me. A letter would help me organize my thoughts and provide something to be added to my file so she won’t have questions when she reviews it later. Genius.
Thanks for sharing your story!
natasha
(a fellow Graves sufferer)
Thank you so much for sharing. That letter is fabulous. I too have struggled, but for me it’s just getting an acknowledgment of some kind that my thyroid (hypo here)is not working. I finally switched from my MD (who is a great family doctor) to a ND/MD and what a difference. She embraces the “whole” not the “parts” and that gives me hope. I’m currently in the diagnostic stage, but I believe there is finally light (and help) at the end of my tunnel.
Bravo to you – it looks like there is light at the end of your tunnel as well.
What a great collection of letters. I’m glad that you kept them and shared them with us. I hope that your new doctor steers you down the path of recovery–good luck!
Erica – Completely agreed. Finding the right doctor willing to listen to us, talk to us and treat us as a whole person versus the numbers, makes a huge difference.
You will find that doctor. One thing you might want to consider, is check out our patient rec’ doctor list here: http://bit.ly/4JqRMx
If you don’t see your doctor listed, add your name/location and email address.
You will find a doc, thysistah!
Joyce – Ann, great show of support. I hope Theresa does, too. In fact, I hope WE ALL DO 🙂
Joanna;
You’re so right. The reminder that we as patients are in charge and we can advocate for ourselves as patients, is paramount to our healing.
xo
Natasha – Our Gravesgirl;
I love the letter approach, too. I think it’s genius.
One thing that I do, that helps a lot, is making a list. Say I have a doctors appointment in a month, I’ll keep a post it on my fridge and add questions, what I think are symptoms, etc. and bring it with me to my apt. PS: The post-it usually turns into a 3 page doc. Shame. Shame. Shame.
Great show of support.
xo
Sherree – So glad to hear that you have a great doctor and that you are so close to a diagnosis. Please, please, please keep us posted; this is great news.
xo
Love what you wrote, Robyn! You’re right.
xo
This might not be the best place for this but I liked what Theresa said and how she’s workig on being in control. I’ve been reading these notes for maybe two months now. I’m 52, I’ve been hypo for at least 10 acknowledged years and because of no insurance, or had insurance but only spent money on the deductible for my child, my hypo-ism was kept silent becuase I didnt’ put myself first. When I was a teenager, the Dr. told my mom that I was just the upside of normal. No comment. Now I have a new doctor who is working with me, I’ve been at range twice “then fell off” and we are adjusting meds again. I know that what I eat has a big part in how I feel each day. Fiber/Protein seems to be the key for me, but I can only eat so much each day! What I would like to know from others is: I have been unemployed for over a year now. I’m very good at what I do, but how do I tell employers what I’ve done with my time off, when I’ve been healing a very damaged achilles tendon all the while not feeling happy, because I’m fatigued, emotional, crying at everything? (I went through menopause fast and early) Tell them it’s okay, I feel better when I’m doing something constuctive and if I take my vitamins too?
Theresa
“Educate, learn and never stop searching for answers and never, never, let a doctor make you think you do not know what you feel. No one else knows you better than you”
BRAVA!! WHOOOHOOOOO *whistles* BRILLIANT ABSOLUTELY FREAKIN BRILLIANT! Well stated, very well stated!!
I am thrilled to see you taking control, asserting yourself to be the best you can be!! Funny, how we were talking about how others (significant others) have a way of damaging our self esteem, the inner record that plays in our heads….. doctors have that very power also – don’t they!?! When they dismiss us, ignore us, refuse to talk with us, HEAR us – that hurts too – and the record we begin to play in our head “I am crazy, this is something else – why? cause the dr said so!” NOT GOOD!
You know YOU better than anyone else, make some noise, bang on some doors, change doctors.. hell raise the roof, do what you can, you’ve got to – to take good care of you! And remember, here, you are never alone! 🙂
Cathy:
You don’t have to explain anything in detail about what you’ve been doing for the past year. You can say you were dealing with some family issues and took some time to care for that.
You can indicate you decided to take a little time off to consider where you wanted to go or do.
They DO NOT need to know the specifics
“healing a very damaged achilles tendon all the while not feeling happy, because I’m fatigued, emotional, crying at everything? (I went through menopause fast and early) Tell them it’s okay, I feel better when I’m doing something constuctive and if I take my vitamins too?”
Only if you feel that it has a significant impact on your ability to do the job you have set out to do.
If you are healed, feeling better, doing all the things YOU feel you need to do in order to be able to work again – then – you are the only one who needs to know what the “hellish health past” was.
Your new employer needs only to know that you are capable in body, spirit and mind to do the job you are applying for.
I wish you every good thing, that the job you seek, will one day be yours! 🙂
Theresa,
What a great letter and what a criminal your previous endocriminologist was… does she not know that keeping your TSH suppressed after finding papillary cancer is a must and as for testing every 6 months good for you going every month. I still do now after 3 years having a total thyroidectomy. As long as I am not feeling well then I will continue to have my bloods taken as and when I need too and no doctor or nurse will tell me otherwise I just book it and call my GP for results.
I am so pleased you wrote down your symptoms and that letter to your new doc she sounds like a keeper. I hope she gets you to a better place than you have been.
Thanks for sharing your story with us, I wanted to shout at your sacked endo for you.
I wish you all the best to better health your DT letter is very reminiscent of my own which still continues today.
Lolly
Thank you everyone for your kind words. It is sights like this that have helped me to find the courage to look for answers to my questions. When you find people that are just like you, and you share stories and experiences you gain knowledge.
After my first blood test on my new natural thyroid Doc raised me by a 1/4 grain and I am now on 1 1/2 grains of porcine thyroid, I also take natural estrogen/progetron, DHEA, and adrinal support among several other supplements I have stumbled across in my journey.
I took a 24 hour saliva test last week and am waiting to hear from my doc the results.
Next month we are going to retest my Feritin and Vitamin D-3 which were both low. Very common in Hypo people I have been told.
I am feeling better but also feel not quite there and Dr Coulter says we will get there.
Thank you again all, your fellow graves/hypo patient,
Theresa
Hi Theresa,
I am so inspired by you!! I am in the same boat and just looking on line for a Natural Thyroid Dr. near me. Please keep posting, as I really want to follow up on how you are doing.
I am on Synthroid, 125, and was put on Cytomel a month ago, also presc. Vit. D. I thought the T3 would help more, it did the first week.
Good luck and I hope you are feeling great soon!!!!
Donna
Hello all, it has been a while since my last post; I thought I was doing well. But, Thyroid is a tricky thing I have found, I got to lax daisy about it all and it got me.
I had a blood test last week to have my levels checked before my Natural Thyroid refill. I was getting this at a compounding pharmacy because it had been difficult to get Amour. On Friday evening my doctor personally called me to ask what the heck I had been doing; did I stop my Thyroid meds? I faithfully take it daily and told her so. She said my TSH was .24 which is very low and my T-4 and T-3 were way low as well We are not sure what happened, other than maybe the compounder mixed incorrect?
Thyroid Cancer was found when my Thyroid was removed so it is very important for me to be less than .2. She said Armour is now available at the Pharmacies and she called in a new prescription for me that I started taking on Sunday.
I knew something was up, my hair was falling out, I have lots of bruising, emotionally I was very up and down, my sleeping patterns were awful, but I attributed this to stress. My husband and I have a lot going on right now, things I will not get into, but I figured all of this was due to stress, not my Thyroid levels.
Thyroid, it rules your life, as I am still learning after all this time, you can’t just forget about it is my lesson I guess.
Always learning, always adjusting, the life in the ups and downs of Thyroid treatment,
How many of you heard, oh just have it out, it is just a pill a day, you will feel great???