I’m always intrigued when I find thyroid experts who have thyroid disease themselves. How can you truly understand what a thyroid patient goes through if you haven’t walked in their shoes? Add to that this expert is a man, and yes men get thyroid disease too.
Written by Steven Geanopulos, DC
My personal journey began nearly a decade before discovering I had Hashimoto’s autoimmune reaction. As a young doctor in NYC just getting started in practice and life the year 2000 was pivotal in my life. I had graduated from school in 1996 and was completing my graduate work in neurology over the next couple of years. I then purchased my own practice with a partner in upper Manhattan, got engaged, bought out my partner, got married, bought a house, and had a baby all in 18 months. It was a whirlwind of activity and excitement and stress.
At this time I was 32 years old and I started to notice my health dramatically changing. Up to 31 years of age, I practiced the healthy lifestyle that I preached in my practice. I was fit, active and enjoyed outdoor sports like rock climbing, mountain climbing, basketball, soccer and a vigorous regimen of going to the gym regularly. So what happened?
I experienced unexplained weight gain, I began to injure my joints with minimal activity, I experienced insomnia, fatigue, brain fog, irritable bowel symptoms. I had 3 knee operations, dislocated my left shoulder, suffered impingement syndrome in the right shoulder that lasted 8 months, 6 months of lateral epicondylitis (tennis elbow), left Achilles tendonopathy that lasted 3 years. The brain fog was so severe that I felt if you were a patient of mine after 3PM you got a doctor with an IQ that dropped a few points. Yet I was living the exemplary lifestyle. I thought if I just kept on pushing and did more of what was “good for me” I would beat this. I would go to the gym on Saturday morning, come home and sleep for what seemed like the rest of the weekend. I had 2 small children who must have been wondering what was wrong with their dad. Why doesn’t he play with us?
Without going through the details, after discovering I was suffering from Hashimoto’s, I aggressively pursued an education in functional medicine combined it with my knowledge and experience as a doctor who practiced the principles of functional neurology, I was able to restore my health over a 12 month time period. Now at the age of 44, I am doing things physically with the same ability and energy I did when I was in my mid twenties. Brain fog is a distant memory and I am sharpest in the evening when I do my presentations in my community after a long day at the office.
As you read through my list of symptoms you will notice that these are the symptoms of hypothyroidism. However I did not have hypothyroidism. I had the autoimmune response that eventually results in hypothyroidism but my thyroid tests were normal. This may seem confusing so allow me to explain.
9 of 10 cases of hypothyroid symptoms are caused by autoimmunity (with or without hypothyroidism confirmed by blood tests). Autoimmunity refers to what happens when the immune system, which is supposed to go after foreign proteins in our blood, instead turns against our own proteins. In short we are attacking ourselves the same way the immune system would attack a virus or foreign bacteria.
If the immune system decides to attack the tissue of the nervous system we are given a diagnosis of multiple sclerosis and we are sent to see a neurologist (who manages the symptoms associated with the tissue being attacked) . If the immune system decides to attack the tissue in the intestines we are given a diagnosis of celiac or crohns disease and we are sent to a gastroenterologist who treats and manages the symptoms associated with the tissue being attacked. If the immune system attacks the tissue in our joints, we are given a diagnosis of rheumatoid arthritis and we are sent to a rheumatologist, who treats the symptoms associated with the tissue being attacked. If the immune system attacks the proteins associated with thyroid tissue, we are given a diagnosis of Hashimoto’s and we see an endocrinologist who treats the symptoms associated with the tissue being attacked. The problem is, none of these doctors are immunologists and do not address what is driving the autoimmune response.
There are over 80 known autoimmune diseases and there are at least that many unknown autoimmune diseases. Autoimmune diseases, if looked at as one single group, far outnumbers the cases of cancer, heart disease, diabetes, stroke put together. The numbers have increased 400% over the past decade.
The points to take home here are:
- If you have autoimmune driven hypothyroidism, you still have to address the autoimmune component or your immune system will continue to attack your thyroid unabated resulting in unnecessary destruction of tissue. You have to learn what in your environment may be driving the autoimmunity and what can you do to protect your blood stream from the inappropriate passage of offending proteins.
- It is very rare for people to have one autoimmune condition. I happen to have 3 known autoimmune conditions. The longer you wait the greater the likelihood you will develop more autoimmune conditions.
- The symptoms of unabated autoimmune reactions can cause all of the symptoms associated with hypothyroidism, without hypothyroidism. Meaning your blood work is normal.
- If your blood tests are made normal by medication like Synthroid or thyroxine you may continue to have hypothyroid symptoms because underlying metabolic processes are not being addressed.
- Men have thyroid conditions and symptoms too.
What has made the greatest difference to me in dealing with Hashimoto’s disease
I believe the turning point for me was when I realized that this was not a thyroid problem (only) and that it was autoimmune.
The next step for me was determining what was driving the autoimmunity. Autoimmunity is first initiated. Once initiated it is not reversible, however it does not have to be a destructive force or result in symptoms unless a catalyst drives it forward. Autoimmunity can stay in remission for many years if not a lifetime if you can discover and eliminate its driving force.
For me that catalyst (or driving force) came from one place, my gut or gastrointestinal system. Laboratory testing revealed I had 3 different causes of destruction to the lining of my intestines that resulted in a constant flow of large undigested proteins from food into my blood stream resulting in an ongoing, chronic, immune response causing high levels of tissue destruction.
I had to eliminate those sources and do the best I could to repair my gut and do so on a regular basis. My lifestyle changes were related to food, I tested for 24 of the most common IgG (immune) food sensitivities and discovered a ½ dozen or so that were causing a significant immune response. Many people trying to learn more about their autoimmunity are simply removing gluten and hoping for results. Sometimes we get results with just that, sometimes the results are temporary and sometimes there is no change. I believe in a more thorough exploration into the food proteins that are a problem for each individual.
For me one of the most significant problems was egg protein. I also was not able to get my hormonal health under control until I addressed abnormal blood sugar regulation (not diabetes) and an anemic pattern (not anemia). It’s important to note that we may have a blood sugar regulation and anemic pattern building that is visible on a blood panel, and not have diagnosed anemia and diabetes. Our doctors need to recognize patterns before they are a diagnosed disease. Diseases are much more difficult and time consuming to deal with. Identifying a trend yields a much better outcome.
This may sound crazy but I feel fortunate to have personal experience with Hashimoto’s. I consider the time spent sick and not knowing what was wrong with me as tuition paid for my unique education. I am grateful for the opportunity to have 1st hand experience with a condition that so many of my patients have.
I tell all of my patients and clients. You must be educated in the process of restoring health and immune integrity. I do not expect you to become a doctor but I DO expect you to become an expert in YOU and what YOU need to express health.
About Steven Geanopulos, DC
Dr. Steven Geanopulos is a Chiropractic Neurologist with a private practice in Manhattan. He attended Parker University in Dallas, Texas where he received both his undergraduate degree in Human Anatomy and Doctor of Chiropractic degree. With a post graduate education in Neurology, Dr. Geanopulos was awarded Diplomate status from the prestigious American Chiropractic Neurology Board, a rare distinction shared by fewer than 600 doctors worldwide. Immediately following his education in functional neurology, Dr. Geanopulos pursued an extensive education in functional medicine that is an ongoing passion.
READ NEXT: 12 shocking symptoms of gluten sensitivity
Please tell me more about getting lab tested for these food triggers. Thank you!
This article is the first time I have really understood what is actually happening to me. I had hashimotos and thyroid cancer, had my thyroid removed and still have all the hashimotos symptoms but they fact that I probably have not addressed the underlying reason for the autoimmune would explain why I am still getting the symptoms. I also have lots of issues with irritable bowel and have diverticulitis so think I will seriously need to look at my nutrition but feel a bit overawed by it and where do I start? Thanks so much for sharing this.
I don’t have a thyroid anymore. I take unithyroid 150mcg and I still feel crappy and I’m getting really tired of this feeling
I have to combine Synthroid and Cytomel to not have the crappy hypothyroid symptoms. You may just need a medication adjustment.
I agree. A combination of T4 and T3 such as a combination of Synthroid and Cytomel, or a combination of another levothyroxine plus cytomel, or a natural desiccated thyroid medication that naturally contains both T4 and T3 is the answer for many of us. Here is information about these options for people reading the comments and wondering about these alternatives: https://hypothyroidmom.com/which-is-the-best-thyroid-drug-for-hypothyroidism/
Hi, im 50 years old and was completely healthy, active and very thin. . I had my first child when I was 32 years old and was diagnosed with hypothyroidism A few months later. Then the following year I was diagnosed with Hashimoto’s. Since then I have gained over 100 pounds I am struggling to even do basic house chores .I had to quit working I’m taking 200 MCG’s of Synthroid , my blood work bounces all over the place I still have hair loss , fatigue , brain fog palpitations , extremely achy joints , bones hurting insomnia and every day between 3 and 4 PM my body hurts so bad I can’t even move. I developed hypoglycemia after my daughter was born and it has now turned into unawareness hypoglycemia/diabetes my sugars are either too low or too high. I read your whole story I think it’s amazing I do eat eggs for breakfast , irritable bowel and every morning and try to watch my carbs. I’ve told my endocrinologist for years how I feel and they just keep changing my dose of my Synthroid. I Literally can’t lose a pound no matter what I do.
Hi Tracy, Synthroid is a brand of synthetic T4 thyroid hormone replacement medication. It is a commonly prescribed medication for hypothyroidism and works for many people. However, there are people like me that don’t do well on T4 only thyroid medications no matter the brand because our bodies can’t properly convert the inactive T4 in those meds to the active T3 thyroid hormone the cells of the body require. Here is more information about this. Good to have you at Hypothyroid Mom: https://hypothyroidmom.com/which-is-the-best-thyroid-drug-for-hypothyroidism/
Excellent information! I’m at a loss for what’s left to eat to keep everything in balance! Resources you recommend?
I did research on this very matter of synthyroid after taking it for several years and nothing was changing. When I had my frontal thyroid removed and left my parathyroid I needed something with both. For me I have been on Natural Desiccated Thyroid for 2 years and find even though I have Fibromyalgia as well I still have a more balance with my nutrients and micronutrients they help with my energy levels.
I’m 79 years old woman who also suffers from Hypothyroidism/Hashimoto for more than 40 years, and for the first time in my life I’ve been able to shed some weight. I went down from 189 to 165. I simply bought a plate that shows the portions for the carbs, veggies, legumes, etc. I have lost 24 pounds in less than two months. I totally eliminate sugars, pre cooked foods because of the high content of sodium. I’ve concentrated in having higher potions of protein like chicken, salon, and less of red meat. Try to eat fruit salads which I prepare at home. I try combinations of 🥬 cauliflower with small grilled steak, spinach salads with hard boiled eggs, no sodas, no juices, cakes, cookies, stick to plain light black coffee or tea. For the first time it’s working for me. I don’t forget the water.
Hello and thank you for your incredible insights.My question is about food sensitivity tests . Are they accurate? I have a few namely eggs, wheat, rye, soy and cocoa.I have been on Synthroid since the birth of my daughter 35 years ago. Normal labs . Lots of gut symptoms , divericulitis ending in a sigmoid resection. Still not feeling great.Help!!
Hi Patty, There is debate over whether food sensitivity testing is accurate. I have personally found it helpful to help me pinpoint foods that could be causing me problems. Elimination of potential offending foods for say 30 days is a great non-lab way to see if your body reacts or not and then reintroducing that food a bit at a time to see how your body reacts. Some doctors will recommend a full elimination for 30 days, say, of the most common food sensitivities such as gluten, grains, dairy, soy, caffeine, alcohol, sugar, nuts, legumes, eggs, corn, nightshades or you can do it one by one if eliminating them all at once is too challenging. Then reintroducing them one at a time slowly to see your reaction. Good to have you at Hypothyroid Mom.
Hi. I am a 70 year old retired RN who was diagnosed with hypothyroidism at age 30. I have been taking levothyroxine for years in various strengths but it has not improved my symptoms. Last October, when I was 69 years old, I finally had a diagnosis of Hashimoto’s Disease. I have almost no thyroid gland left and have developed other issues which may or may not be related to Hashimoto’s. I am reasonably intelligent and feel that if I had a proper diagnosis earlier in my life, I may have been able to take steps to treat my Hashimoto’s and live a more comfortably. I am writing this to stress how important it is to get a correct diagnosis early in the disease. Thanks for all of the interesting and informative articles you have presented.
Hi Lisa, Thank you for sharing your experience with thyroid disease. It would definitely make things easier if every person would receive the correct diagnosis early in the disease. Good to have you at Hypothyroid Mom.
May I ask who you finally found to give you correct diagnosis? What kind of dr did you find?
I had my thyroid removed due to cancer, the doctor said he believes I had hashimotos as well. Since they removed my thyroid is it possible to still have hashimotos? I have all of these symptoms and my tests always come back “fine” for my levels.
I’m so tired, literally and figuratively. I’m only 36!
Hi Sara, You ask a very interesting question and one that can’t be answered so simply. Back ten years ago when I first started Hypothyroid Mom, I assumed that if you had no thyroid gland then there is no thyroid gland for the immune system to attack so it would make sense that the person’s body would no longer produce thyroid antibodies. It’s logical and I imagine it is the answer in many cases. However in my ten years you would be surprised how many people have told me stories of having undergone complete thyroidectomies who later showed positive for thyroid antibodies just the same. You would also be surprised how many people have told me stories of how they had a complete thyroidectomy and for whatever reason had neck ultrasounds done that showed some thyroid tissue remained or it regrew in some cases. Even small amounts of thyroid tissue can trigger an immune response. Ask your doctor to test thyroid antibodies, TPOAb and TgAb, just in case. Regards, Dana Trentini (aka Hypothyroid Mom)
Hello,I have Hashimotos for many many years,I take 100 mg thyroxine every day ,hopping one day I might feel well.all my muscles hurt and joints I don’t sleep well,and sometimes all this makes me depressed.
Also there is the weight problem I find it very hard to lose any weight whatsoever.I have heard selenium helps can I take this with the thyroxine,would love to know what else I can do to I return my quality of live ,I am 72 .
Please any suggestions.
Thanks
Hi Chris,
Here is an article on my Hypothyroid Mom website about how to take your thyroid medication properly including taking it 3 to 6 hours apart from other medications as well as from supplements like selenium to ensure they do not interfere with the absorption of your medication.
https://hypothyroidmom.com/are-you-taking-your-thyroid-medication-properly-are-you-sure/
Thyroxine contains T4 thyroid hormone only. Some patients do great on these forms of medications but others do not and one of the big problems is that our bodies must convert that T4 hormone in the medication to the active T3 hormone that the cells of the body require and not all of our bodies do that efficiently including mine which is why many of us do better on a combination of T4 and T3 thyroid medication. Here is more about this: https://bit.ly/thyroiddoctors
Great to have you at Hypothyroid Mom.
Regards,
Dana Trentini
I turned70 in March! I was diagnosed with celiac disease at age 18 months! A long, sick life until I could take control of my own health. I was diagnosed with hashimotos 8 years ago. It’s been downhill ever since. I have an allergy to egg yolk and dairy. I am gluten-free but I never feel good. Every day is a new ache or pain, it’s like an alien moving around my body, knee one day, then my ankle, then my shoulder, hip etc! So aggravating!
Thank youDr so much for sharing your story, I plan to try again as I had given up, especially since the Covid took over our lives. Bless you 🙏🏻
Maybe try Whole Food, Plant Based Lifestyle. See Nutritionfacts.org for the latest in thyroid issues. Since transitioning to WFPB I have no more inflammation, no more migraines, no more leg pain, no more sciatica, no more puffiness, no more brain fog, no more low energy, increased eyesight, increased hearing, etc. Give it a try for 2 or 3 weeks. And I thought I would miss my old foods, but I do not in the least.
This was a very good article. Being a retired RN and having had thyroid cancer it actually makes me wonder if I may have some autoimmune issues due to some issues I have. Also for 7 years my TSH number started dropping. I did have a free t3 and t4 done but they remained normal. When my hair started coming out in significant amounts and I started gaining weight for no apparent reason I asked to see an endocrinologist. No hint it could be cancer. AND with my TSH number leaning toward hyperthyroidism you would have thought i would have lost weight. Thanks for the info.
I have been looking into hypothyroidism a lot. I have a lot of the symptoms but my family practitioner says my blood tests are normal. If my issue is (are) autoimmune disorder(s) would I still see an endocrinologist. I want to get to the bottom of my symptoms, it is effecting every aspect of my life
Hi I was was diagnosed with overactive thyroid. Reason for me to consult was my heart rate and was always feeling hot and and lots of energy.keep loosing wait and my hair was breaking and thinning.Dr took blood sample which confirmsed. She suggested a scan which also confirmed that I have overactive thyroid. Dr suggested to give me radioactive iodine small dose. I recently went for another blood test. I was told now I have under active thyroid I should use chronic medication. Now I’m suffering from anxiety and I have gained a lot of weight. Still on that chronic medication since December last year. I sometimes have runny tummy and not happy at all.
Mine happened the opposite. I went from hypo to hyper. The
Meds that doctor switched me too was too high of a dose. I thought I was dying. I knew my body and knew something was right. He stopped my meds completely and it took 6-8 weeks for meds to get out of my system. Went to doctor yesterday and rest test to see where my levels where. Got call today that it went back down and now they putting me back on synthyroid .01mg. My anxiety isn’t as bad and my imsomina stopped a little. But I feel your pain.
Can exposure to chemicals in new mobile homes of th 70’s through 80’s? I purchased my mobile home in 1976. By 1986 I was diagnosed with hypothyroidism
Frank, That is an interesting observation. It wouldn’t surprise me in the least. Good to have you at Hypothyroid Mom.
Is there a doctor or type of doctor in Houston, TX you would recommend? I have have hashimotos and have an endocrinologist who thinks I’m fine because my labs are normal.
Thank you!
Kristie,check out Dr.Carrie Blades, I’ve been seen at her office for a while. Her team has changed me in so many ways.Call them to get office visit prices and you may need GX Science testing as well,besides other special tests,and insurance is NOT accepted unfortunately, only LabCorp and Quest labs may cover some tests under insurance but it’s best to call them to find out if they are right for what you need answers and treatment on.It may take months to get in, but so worth it.Average PCPs don’t check for underlying female and male hormones, testosterone levels and they treat many patients with Hash/Graves. Best of luck and yes,this article was Amazing 🔥 K.A.S.
I have had both glands removed but still struggle even though I am on meds help me
Try this for HYPOthyroidism. Not for Hashimoto or hyperthyroidsim. I was on Levothyroxine, then Armour. Kept telling Dr., “Yeah I feel better but not great.” Brain fog, fatigue, headed towards depression. Dr. wanted to put me on depression/anxiety meds. At the same time a family friend sent me Nascent Iodine to take along with Selenium. A light bulb went off and I feel great. Brain fog disappeared. Energy and mood increased. Cancelled depression medication. Just wish to help others to feel better. Please do your own research. I found it to be a miracle in a bottle for me. Hope it works for you. Try for a month….
Hi…..
where u able to reduce your thyroid meds after using these supplement?
Thank u
Did you take in addition to your Armour
august 5th 2019.
I was on a levothyroxin for almost 15 years.
during hat time i acquired twelve of the thirteen symptoms of hypothyroidism.
Then I was coughing and gagging. Si I ask my doctor to give me Synthroid. I had it for 6 months and all the hypothyroidism were removed except brain fog.
I missed the pill few days and i felt better. so i stopped taking it.
My doctor son calling me crying saying that i will die if I do not take it.
I was dying for a year then i decide to reduce the strength to half 150Ug to 75Ug.
taking 75ug for six moths then again I forgot to take it for few days.
My blood test showed high TSH 12 reading.
I gave up and now going with how i feel.
I play sand volley and walk 5 miles a day.
I have not seen doctor for 1.5 year even though i am covered and 77 yrs of age.
i am not active anymore because my whole day is taking care of my mom at age 104 and 105 in coming October.
I have been taking care of my mom for two year and 9 months.
I prepare healthy food and give her the synthoroid the only medication she is taking.
Now I have a problem. My mom was in the hospital at age 102 and was giving Haldol pills. her hair is turning black indication that her mobility brain was damaged.
I am trying to find any solution for that problem.
Pharmacist and nurses said she should have never taking that medication.
now she cannot stand up.
I would like to know if hypothyroidism can cause you to loose your sex drive. I have absolutely no intrest in it at all. I also find it uncomfortable even painful at times.
Me too so glad you asked that I thought it was just me. I was diagnosed with hypothyroidism at 9 I really never took my meds right when I was younger, it was only after having my younger two girls at 27/29, that I just do NOT function without it. Thanks again maybe someone will address this.
I am a 61 yr old Female. At age 20 I had walking pneumonia as I was getting better I started having symptoms of pregnancy. Sure enough, 9 months later a bouncing baby girl. When she was almost 2 was diagnosed with a chemical imbalance (mood swings) 6 weeks on an antidepressant and back to normal self. When she was 3 I was diagnosed with Pelvic inflammatory. Then told it was a cyst on my ovary that came & went when I ovulated. Very painful but after some antibiotics it went away. Then came the anemia & hypoglycemic. And then with tyroididis 2 weeks of taking aspirin and it was gone. All of this before I was 24 yrs old. Then I had another baby. Everything went well, until she was about 6 months old. After gardening (with gloves) my hands broken out in these small blister looking things- turned out to be strep. By now I am 27. Short time later started getting migraines, several times a week of debilitating headaches. Then what seemed like suddenly I can’t pick up s gallon of milk and pour it without spilling it. Then overwhelmingly tired all the time and my back hurt all the time. Doctor told me it’s all in your head. Found a new doctor. Tons of tests, to be told I had Fibromyalgia. Went to physical therapy recommended by my step sister. That man saved my life. After initial testing they found I had less than 50% strength in my hands, arms, had lost small amount in my legs. My back was in bad shape. Spasms, knots etc… years later I was coaching my daughter’s softball team with very few visits to PT. Now in mid 30’s. When I hit 42 things started going haywire again. I got very sick with a virus. Went to the doctor. My thyroid was high. Went to 2 endo’s. One wanted to take out my thyroid, the other said I had nodules on my thyroid. Wait until it is worse, will do radiation treatment I’m told. Went through menepause at 43. Nothing has been right since. Now I have diabetes, thyroid issues, neuropathy. Feel like crap all the time. My doctor is no help- once again said “no single pill will help”. At my wits end. I was told at the beginning that these autoimmune issues that I had had also been diagnosed in many patients but no one explores why. No “cure” for any of them I’m told. Now having sleep issues. Barely maintaining. How do you find a doctor that actually will do something to help!?
my mother is a nurse. my father was a cardiologist (deceased 15 years and no one seems to remember where i come from) . i am a biologist. when my daughter was 3 i was diagnosed with papillary thyroid cancer. i have lived a mostly healthy lifestyle. i felt like i wasn’t sick but the immediate suggestion was complete removal of my thyroid. this blog saved my life. that and ten years of fighting with doctors that told me i was just getting old (at 35) and to just deal with it. i have been threatened with loosing my children and being locked up for medical non compliance for trying to manage my symptoms. doctors need to remind other doctors that listening to their patients is an actual thing .. keep up the good fight. thank you
It is never too late to feel better. Ask pharmacy who prescribes the good thyroid meds, call doctors and ask if they prescribe them. Ask around. Find a enviornmentalist, naturalist, someone who cares.
I had a total thyroidectomy at the age of 17. I am now 67 and have never had any testing beyond T3, T4, and Tsh . I have had so many serious health problems, have seen many Endocrinologists, and it was never suggested to me to have any further types of testing. Thank you for your info.
I would like to know what he did specifically to get his health under control
Arrrrghh! I can’t win! Have got hypothyroidism and am on immuno-suppressants for a transplanted kidney. I’m f*cked.
Can you have Haiti’s and not have a thyroid? Mine was removed due to tumors but my health has deteriorated. I test positive for anti bodies and my thyroid levels bounce all over the place. Thanks!
I thing I have hachimoto problem I am on 100 levothyrox can you advice me what to do please I stopped sport cycling I use to cycle 90 km
I have Hashimoto’s and have taken 100 mg Levoxyl, then Cytomel when I had muscle and joint pain from the Levoxyl. Then the doctor decided I’d be better off with both levolyl and cytomel, again pain, and heart palpations. I’m now on amour thyroid ( from a pig) and have fibromyalgia pain pretty bad. I tried the pure form (gel caps) of synthetic thyroid and had a seizure. He put me back on T3, but I’m having heart palpations and chest pain on 2 cytomel daily . I’m afraid to stop taking thyroid supplements altogether, as my TSH is 68.68 way high or (way too low)
Hello Mary..was your dose taken up slowly? Read about dosing on stop the thyroid madness it might help