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What Awareness Means To Me Cyndi Woodruff
Dr. Oz,
I have watched you since you were a regular guest on Oprah. I, listened to your XM Radio show. Now, I watch your TV show.
I happened to see you on Good Morning America with Robin Roberts. You were discussing hypothyroidism and what the symptoms and treatments may be.
I want to thank you for talking so candidly about natural thyroid hormone replacement. (Armour Thyroid), Many physicians, including intelligent and competent Endocrinologists STILL don’t understand the benefits of a natural medication. I have to take two medications (Levoxyl and Cytomel) to accomplish what NTH could do. The Cytomel, I have to take twice a day. I have one of those endo docs who feel that the Armour Thyroid solution is not ‘consistent’ or ‘stable’.
I was one of those patients who had a ‘normal’ TSH. Ironically, I used to work at the Endocrinology office that I am now a patient at!, So, I was a bit familiar with the symptoms. I was never a nap taker, and suddenly, I would have to actually leave work to go home to sleep…..taking, at times, FOUR hour naps!, While still going to bed at 9 or 10pm. I was working a full-time job and then a few hours a week at one of our local “Curves” gyms….I was very active and loved to work out. However—-I started rapidly gaining weight…with NO change in my diet or exercise routine. My skin was very dry, my periods irregular, my hair was falling out, and my left upper row of eyelashes fell out. (I know…I’m strange!, It’s usually eyebrows!, Not me….every time my thyroid decides to mess with me a bit, not only do I gain a few pounds, I lose those same eyelashes!!)
I kept going to my family physician and in a period of 9 months, I had gained SIXTY pounds. I was so depressed and exhausted. I quit both of my jobs. My “physician” told me that it was just my ‘age’ and stress. At this time, I went to my Nurse Practitioner (Gyn) for my annual Pap and exam. I hadn’t seen her in a year…..so when she walked in to the exam room, she sat down and said, “Cyndi, what is going on???” She’s known me for 15 yrs…she knew that this was not ‘typical’ for me. She asked if any thyroid tests had been conducted. I said, “Yes, in fact, about 7 of them. My TSH is in the normal range.”, So, she (correctly) ran a full thyroid panel. My Free T3 was ‘off’–slightly.
At this point, I took control. I called the office manager of the endo practice and faxed her my lab results. She took them to one of the physicians and he said, “Yes….she has a thyroid problem and with her symptoms, get her in here.”
I cried.
I THOUGHT, as you suggested this morning, that **abbracadabbra**!!, All my problems were now solved and fixed.
NOT SO FAST, Dr. Oz. While I applaud you for even speaking about natural thyroid replacement hormones, I am going to tell you that this is NOT an easy disease to treat. It may be for the physician….”Here’s your prescription….see ya.”, It is anything but easy for the patient. I have been treated now for about 3 or 4 years. I am all the way up to 175 mcg of Levoxyl and 10 mcg of Cytomel/twice a day. This is an ongoing battle with autoimmune disease. (My physician says I likely have Hashimoto’s—nope, never been tested!!)
Most importantly, I cannot take off the weight. I don’t do carbs. You don’t agree with that, but I have found that the pounds creep on if I include ANY. So, I eat lean meats and some fish with LOTS of veggies. I do NO sugar, not even any whole grains. NONE. I take supplements that are ‘supposed’ to help….zinc, selenium, Omega 3’s, Vitamin D, and even Rhodiola.
I have found some awesome support and education through a couple of online forums. A most helpful person is Mary Shomon…a hypothyroid patient, herself; she is a marvelous patient advocate. Another source of help is www.dearthyroid.org. Liz and Katie have formed a very welcoming atmosphere for patients to retreat to. We understand each other, listen, offer support, advice, etc….
I workout 6 mornings per week. Right now, I am using the P90X DVD’s. No weight loss. So, yes, I fight to stay ‘happy’….my 30 year marriage is suffering…..I’m not ‘attractive’, I guess. Life will never be the same as before I was hit with this disease. After so many years of believing that I could ‘conquer’ it, I find that I cannot.
So, thank you for bringing awareness to this very common and very serious autoimmune disorder. There are millions of us actually suffering…..
Cyndi Woodruff
Tags: autoimmune disease community, autoimmune disease support, autoimmune diseases awareness month March, autoimmune literary community, awareness for autoimmune diseases, Cyndi Woodruff, Hashimoto's autoimmune disease, Hashimoto's patient, thyroid cancer patients writing about awareness
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29 Responses to “What Awareness Means To Me Cyndi Woodruff”
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Dear Cyndi: I totally sympathize with you…you are doing “everything right” and getting nowhere. You must have a wholistic approach if you hope to get better. I suspect you have an adrenal and/or hormonal imbalance…add in (likely) too few calories and excessive exercise…
Dr. Poppy;
Thanks for stopping by and sharing your thoughts.
I’m curious to know why you think Cyndi must take a wholistic approach, and what this approach might look like. Would you mind elaborating?
Thanks,
DT
Yes, Dr. Poppy….I believe I have major adrenal problems, along with being perimenopausal.
I asked my Endo about the adrenal connection, to no avail. I tried going to a natural/holistic physician…what did they do? Lowered my Levoxyl and I gained 20 lbs.
I am open to your suggestions……
Thank you!
Cyndi
Cyndi, have you considered trying NT? I know people who are on synthetics and have not lost one pound. My dr upped my NT recently and I’ve gone down two sizes.
It’s sad isn’t it how life changes. I went from someone with mane down to my butt and garnering looks from men wherever I went to losing 90% of my hair and gaining 40 lbs. I am determined to get back to where, and who, I was.
Cyndi – if you haven’t already – to to this website….stopthethyroidmadness.com
A wealth of information there including adrenal problems and solutions. You need to find an Integrative MD, who tests the adrenals (Mary Shomon has a list of thyroid Dr’s available – probably not all Integrative though) Good luck to you!
Cindy, my story is very similar to yours and I am on Nature-Throid. I also take an adrenal supplement, which is helping. It’s made by Dr. Tietlbaum. “Adrenal Stress-End”. My diet is the same as yours. I just recently stopped all sugar (carrots, apples, etc.) because I now have reactive hypoglycemia (treated as narcolepsy for several years) but I continue to gain weight, so I am hoping this latest approach to diet will help. I am also perimenopausal. I have one ovary that’s working very hard to function so it’s not going to last much longer. Luckily I do not have hot flashes or any menopausal symptoms.
I am going to ask for a script for Erfa Thyroid from Canada because from what I understand it’s the same ingredients as the old Armour. I was on the old Armour for three weeks when it suddenly became unavailable but for those three weeks, I felt wonderful. The difference was truly amazing so hopefully my new hormone doc will give that to me, who happens to have Hashimoto’s herself.
Thank you for writing this letter on all our behalves. Keep fighting Cyndi.
Love ya,
Lori
i feel your pain and frustration. and, i learned something new.. i had no idea the reason my eyebrows thinned out so was my thyroid issues!! (at least they arch beautifully.. if only it were the hairs on my chin that fell out!)
best to you, i’m glad you know you are not alone… we all live, gain and shed hair together!
I feel your pain too Cyndi but you really should be losing weight if you exercise and eat sensibly. I think you have adrenal fatigue and all the thyroid meds in the world will not do any good until you fix the adrenals. Get them checked, you can do it yourself without a doctor and it’s not super expensive. It might be the best money you ever spent. I agree that you need to go to Stop The thyroid Madness, Janie has the best information for thyroid/adrenal issues. And get your antibodies tested too so you know for sure what is causing your problems. Hashi’s is the most common but there are other reasons for thyroid problems. I’ve been there so I know what it’s like but after many ups and downs, I’m back up again. The whole Armour reformulation and natural thyroid shortage really did a number on me but now i’m taking ERFA and loving it. My doctor had no problem giving me the Rx and it was easy to order. Not all naturopathic drs are the same, you need to find one that believes in adrenal fatigue and is willing to treat with hydrocortisone. Ask for help finding a good doctor because that is the key to recovery. I went to 3 different doctors and finally the 4th one got it. There are good doctors out there believe it or not.
Best of luck to you Cyndi and don’t give up!
Joann
Cyndi, {{hugs}}
I can feel you on the weight loss and the marriage suffering. Please hang in there. Sometimes our thyroid’s speak for us and they are angry little butterflies. I don’t know your complete situation there and I am not an expert – but I was the one that was causing strain in our marriage. Not me personally – but my gland was making me very angry and judgmental.
I agree with the others and think it might be something more than Hashimoto’s.
Weight loss for Hypo’s is never easy but it can be done. I have found that when I monitor everything I put in and do to my body, in terms of exercise, needs to be accounted for before I lose any weight. I work out twice a day AM and PM I burn roughly 500 calories during those times. I add that 500 calories to my daily calorie max, which is 1100 and it gives me 1500 calories I can eat in a day. This seems to be the magic # for me. But I am not always diligent in doing that and I fall off the wagon several times. I have decided not to beat myself up about it because then it causes me stress and stress in not good for weight loss. I also, like I said, monitor my workouts by using a heart rate monitor. Funny thing is, I can tell from that when my levels are off. My heart rate spikes really good when my levels aren’t right.
I also agree with everyone else that a new doctor is in order for you. When you do see a new doctor – ask for a complete blood workup including the necessities – but also as if they were doing a yearly exam. Make sure you are getting all of the vitamins your body needs and the only way to do that is complete blood workup.
I know it sounds silly – but add some more carbs into your diet. Maybe some complex ones?
I better stop before I ramble anymore. But I wanted to let you know we all stand by you and wish you the best of health.
Oh gawd – now I can’t do math – total calories for the day is roughly 1600. Depending on how much exercise. 🙂
Cyndi, you are brave for speaking out! We admire you for that! Thanks for writing Dr. Oz and trying to bring about awareness. There are so many people who are undiagnosed, suffering, and have no clue they have a disease!! Crazy to think about!
And what’s also crazy is that they haven’t tested you for antibodies. WTF is that about? Do you think you want to get tested for Hashi’s?
<3
I think there must be something else going on with your body besides being hypo. I recently saw a little news video on the web about a woman who gained a lot of weight for no reason, and it turned out that she had Cushing’s Disease. This can be caused by a pituitary or adrenal problem. Sorry, I forgot to bookmark the video, so I don’t have the link. As I recall, she had to deal with disbelieving doctors who thought she was lying about her food intake, so it took her a long time to get a diagnosis. She ended up losing her job because she was a newscaster and no longer looked good on camera. After getting diagnosed, she had surgery and was expected to have a complete recovery, but it is sad that it took her so long to get diagnosed. Just keep trying to find answers!
Cindi Great letter i would ask for your antibodies to be tested. You are so right too about this is not an easy disease to treat, after all it controls our metoblism,so if the thyroid is off so too are we, getting that fine balance isn’t easy.
It’s like fine tuning an car so that that it performs better haven’t found me a good fucking mechanic yet so I’m doing a DIY job on mine.
Lolly
I didn’t even know I had a thyroid problem, because I stopped going to conventional doctors for anything when they couldn’t diagnose or offer any treatment for my long list of health problems. But I did.
What turned my health around was a Nourishing Traditions diet (Weston A Price) with lots of fermented cod liver oil and coconut oil (GreenPasture.org), essential for thyroid health (and by the way, fermented cod liver oil is fantastic for any kind of autoimmune disease), and iodine supplementation (Breast Cancer Choices). Both the WAPF and BCC websites have great information on thyroid health if you do a search, and they have links to support group forums, also. I wish you all the best, and hope that your recovery will be as good as mine has been!
I agree with the Weston Price/Sally Fallon Morel approach but you can take it further with Dr. Datis Kharrazian.
Hi Cindi,
I am a seven year survivor of breast and thyroid cancer. I had my thyroid gland completely removed in February 2003 and have struggled with keeping my thyroid hormones in balance ever since.
I would love to try Armour Thyroid, but no endo I know of will prescribe it for me. I can’t even get Cytomel. Conventional endos only prescribe Synthroid, which really does NOT help at all. Oh and yes, my eyebrows too have faded, but until I just read your blog, I never realized it was from being hypothyroid. I also gained a lot of weight from my breast cancer treatment. I took steroids with the chemo, plus the chemo threw me into menopause, and in the midst of all that, I had my thyroid removed. I’ve been struggling with weight ever since. Before all this happened, I was able to drop weight whenever I needed to, but now, it’s a major hassle. I dropped all carbs and sugars because I’m Pre diabetic (probably due to my hypothyroidism), and I do work out about and hour each day, but my weight just keeps going up and down. I lose a pound one day and gain back 2 pounds the next. It is frustrating as hell. I wish you the best of luck. Maybe together, we can find a solution.
Cyndi,
What a thought-provoking post, and I’m so glad that you’ve found some of my info helpful. I also know how hard it is to struggle to lose weight.
I strongly recommend you read the article about leptin and Reverse T3 — it’s really important info for many thyroid patients who are struggling to lose weight.
http://thyroid.about.com/od/loseweightsuccessfully/a/weight-loss-diet.htm
Hang in there — you’ll find the answers!!
Mary
Hello Everyone!!
Oh my gosh…..I hadn’t been back to read what everyone had to say about my letter. I’ve been in an AutoCAD class and it managed to do a complete ‘brain-drain’ on me!
Alas…..I have now finished that and the new class is “The History of Furniture from 1830-Present”….yawn…wake up, y’all!! LOL! Surprisingly, it’s another time consuming class!
I do have to figure this out…I do believe that I have adrenal exhaustion. We all have so much stress. I hate to sound like a whiny-baby…my return to school has just added so much more.
I will re-read these posts, take some notes and do more investigating. I am in Asheville, NC—I know we have an awesome lab here that does a lot of the testing recommended. And, I need to find the right doctor.
What I truly hope is that Dr. Oz read my letter. Awareness is the only way we are going to be treated (literally) in the way that we individually need.
I thank you all so much for your love and support. You are an amazing group of friends. In that way, my thyroid has truly blessed me!!
Cyndi
Dear Cyndi..Thanks for speaking out,we really appreciate your honesty and willingness to tackle the problems of mistreatment,no treatment or misdiagnosis..here at TANZI(Thyroid Association of New Zealand inc)We are pro choice(we realise some people can not tolerate NTH well) but generally we say that T4 keeps you alive but Whole thyroid gives you your life back..even with Hashimotos.
I do hope Dr Oz and all the other Doctors who have left us untreated and untested for so long will listen to our stories…this thyroid scandal..I was hypo for 15 years with no antibody tests..and hashimotos now diagnosed,I have lost weight and gained energy on NTH..best wishes for your health and thanks once again for challenging the status quo..
I have a theory regarding the huge increase in people suffering thyroid disease. We’ve been force fed fluoride for the past 40 -50 years, without anyone actually knowing if it caused any problems. If you watch ordinary television, or just walk down the street, check out women’s necks. You are unlikely to see skinny necks. Then find an old black and white movie, or even a European movie and look at the necks in it to see what a non thyroid neck looks like. A mass medical experiment with no one noticing the results. Problem is when the fluoride replaces iodine in your body, it is very difficult to remove it. You are wasting your time with any treatment unless you remove fluoride sources from your diet. (fluoridated water, obviously, but also tea, grapes, any food washed or prepared with fluoridated water). Check out http://www.fluoridealert.org for starters.
I had thyroid cancer, thyroidectomy and 8 years of synthroid. No weight gain, but fatigue that caused me to nap daily, despite a good night’s sleep (and many nights weren’t great either). Meanwhile, I’ve found my way back by adding T3 and by balancing neurotransmitters through http://www.neurogistics.com.
Maybe this could help you too. I recommend it.
I would also suggest that you test your D levels. It is a 25(OH)D test that you want (NOT a 1,25(OH)2D test) and you want your levels nice and high. If the test is from ZRT – affordable blood spot test available via http://www.vitamindcouncil.org – you might want to seek a level of 60-70 ng/mL. You’ll find the range of “normal” to be 32-100 ng/mL, but the D experts seem to mostly agree that anything below 50 is substrate starvation, so that is why I say to go for 60-70…nice and solidly high, but certainly not toxic.
I have found that my hypothyroidism has largely been resolved w/these higher levels of D AND by consuming plenty of vitamin K2 daily along with trace minerals via ionic mineral solutions. K2 is also hormonal, much like vitamin D, and it does not build up in our bodies as much as D does, yet it is also a fat soluble nutrient/hormone. I actually make my own natto, the food with the highest levels of K2, but you can also get K2 in fermented foods like hard cheese (eat EU cheese because they don’t do weird stuff to their cows/sheep w/rBST), sauerkraut, pickles, kefir and in animal organ meat. If you want to use a supplement, it is available as MK-7 which is superior to MK-4, the synthetic form of K2. Use a search engine and enter “vitamin K2” or menaquinone and learn – it binds the SXR (a nuclear receptor like the vitamin D receptor) and K2 will eventually get as much press as vitamin D does these days.
Interestingly, there is another thing you might pursue, go to http://www.calciumlie.net and check out type 2 hypothyroidism. I believe he is on the right track about calcium dysregulation and I supplement minerals (along w/my D and eating lots of K2) w/an ionic mineral liquid from the Dead Sea. Both D and these ionic minerals are very affordable and easy.
And even more interestingly, calories are not as important as you’ve been told. Calories are dogma, but the science does not support them as the basis for weight: that is, calories in minus calories out does NOT equal weight gained or lost! I know, heresy. See Gary Taubes’ Good Calories, Bad Calories for some insights. And then go for eating lots more fats, continue to shun grains and sugars and make sure you get enough D, K2, Mg and trace minerals. I think you will find, as I did, that weight tends to go away as you become truly nourished. It helps heal so many things, including thyroid woes.
Good luck,
Micki
Cyndi, recently I picked up a great book, Why Do I Still Have Thyroid Symptoms? When My Lab Tests are Normal: A Revolutionary Breakthrough in Understanding Hashimoto’s Disease and Hypothyroidism. I have struggled since 1998 with hashimoto’s, adrenal fatigue and finally menopause. I have been through the maze that I see repeated on so many of these blogs about thyroid. My condition has been anything but stable – that’s one of the most difficult things about it – it’s always fluctuating which I think is why it’s so difficult to manage! I agree that the weight gain can be so difficult to deal with. It really messes with your self image and your life!
The book offers no immediate miracles but a different philosophy about why it’s happening and a different approach for working with it and most importantly, testimonials that gave me “hope”. The premise is that it’s your immune system that’s off balance. This imbalance causes a chain reaction of problems in the body. Since most of your immune system is located in your gut, the idea is to work on healing your digestion to begin healing your immune system. I have been working with a consultant since January. I have not lost weight but I know the inflammation is calming down which has the affect of making me feel “lighter”.
I would strongly suggest checking out this book. The author offers educational seminars to practioners across the country. His name is Dr. Datis Kharrazian. You may be able to get a referral to a practioner in your area who is trained on his methods.
Good Luck!
Dear Cyndi
I am crying as I type this – this letter is my life.
It’s so frustrating to work so hard and still be overweight. People treat you terribly and think you must be fat and lazy when the truth is I work out more than them and I eat so very little. I am on a gluten free diet along with no sugar. It’s not a fun way to live and there are days I think why bother I’m fat anyways. My trainer doesn’t believe that my intake is what I show him becuase he figures I should be a size 2 at that rate. It’s so frustrating.
I believe if this were a male dominated issue we would have better solutions.
Best of Luck to you Cyndi.
I’m heading to my 7th doctor. I continue to have hope.
Peggy
Cyndi- I can so relate to you! I too am trying a whole foods diet sans gluten and only natural sugar in the fruit. I think the break through for me is Magnesium supplements. They are called the natural relaxant. Through this I was able to drop 5 lbs. the world to me and a whole size. I’m not where I want to be but I deffinately am not going back.
I’ve been reading Dr Hyman Ultra Metabolism he explains the gut/brain connection, stress, diets…it makes so much sense and has been really helpful.
To All,
I have Hashimoto’s, hypothyroidism, low adrenal function, and post menopausal. I am finally starting to feel better and shrink.
GLUTEN is the main problem. It sets up an autoimmune reaction that takes 8 months to calm down. Dr. Datis Kharrazian wrote a wonderful book on the subject titled “Why Do I Still Have Thyroid Symptoms? I have been gluten free since Jan 1 and am feeling the difference. It is a life style change not a diet to try short term. And natural thyroid treatment, for me Armour.
I forgot to mention that adrenalfatigue.org has a great adrenal rebuilder supplement that I take 3 times a day. It is formulated by Dr. James Wilson and I swear by it.
Also take, Vitamin D, E Zinc, probiotics.
It is a balancing act and the thyroid, adrenals, stomach and intestines all need to be taken care of.
Hi Cyndi
I’m over in Manchester, UK. I’m only 2 years into my thyroid extravigansa. Suffered for years then diagnosed with overactive thyroid in 2008. Had RAI and now underactive. I’ve been struggling with dis-believing doctors and family too. Kept being told my TSH is okay now sod off. Since january i’ve cycled to work (hills included)nearly every day clocking up nealy 80 miles a week. I jog 4 miles to my mums on sundays and yes, i haven’t lost even 1 lb! But got a new consultant at hospital and he seems on the ball with how I feel so fingers crossed. Peggy you made me cry with your message. I think that I have to try the gluten free thing too now. Love to all of you and never give in 🙂
I have thyroid disease and so does my sister. When I was diagnosed I was losing weight and very nervous. My sister went the other direction. Thyroid disease is very difficult to regulate and just like diets, what works for one individual does not work for another. When I was diagnosed I weighed 98 pounds, after 2 children. I have been able to put the weight on and now can’t get under 150 pounds. I feel overweight now. I don’t diet, but watch what I eat and exercise a couple times per week. When I was exercising 3 times per week, every week, I kept gaining weight. My sister’s weight just got worse throughout and she has began the no carb diet and within less than a year she has lost the pounds. We still struggle but we only use synthroid. Again, this affects everyone differently.