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Posted by @kateinhawaii in Autoimmune Diseases, Nov 3, 2011

This is a growing malady world-wide. It is not easy to treat and reason for discussion on this board with anyone who has it.

Personally, I've probably had a thyroid/adrenal issue for a long time, but standard labs never uncovered. After a very stressful period in my life, I developed either anxiety disorder or adrenal fatigue, eventually leading to recent diagnosis of Hashimoto's (auto-immune disorder: antibodies attacking thyroid). My symptoms are fatigue, anxiety that leads to depression, hoarse voice, sore thyroid, high anitbody reading.

I'd like to know where folks have found any kind of relief or any educational material they want to share. I've gotten a recent publication, "Hope for Hashimoto's" by Haskell, that I suggest anyone with Hashi's read.

Hope this will spark a dialogue.

Aloha from Hawaii

Tags: hashimotos, thryoid disease, hypothyroidism

CathyF and JeanneM like this

Posted by Anonymous-95274fcf, Nov 13, 2011

i never heard of hashimoto disorder. does it only affect muscles, meaning it has no effect on brain matter. i am online to find more about leukodystrophy and i'm discovering all kinds of immune diseases. i saw a mayo video about a woman who got her thymus removed for myasthenia gravis. i wish this was the answer for leukodystrophy. there are no answers for leukodystrophy. thx for recommending this book, i'll get it.


Posted by @kateinhawaii, Nov 13, 2011

I've not heard of leukodystrophy either. There are so many immune disorders, it is kinda' frightening! Thyroid is the master switch of many body functions: temperature, digestion, brain function, emotions, on and on.

From the Academy of Neurology "Treatment for most of the leukodystrophies is symptomatic and supportive, and may include medications, physical, occupational, and speech therapies; and nutritional, educational, and recreational programs. Bone marrow transplantation is showing promise for a few of the leukodystrophies."

Posted by Anonymous-95274fcf, Nov 13, 2011

thx for the feedback. how are you doing.

i stayed awake all night reading about enzymes. i did come across one reputable article that said pancreatic enzymes can inhibit cytochenes. this is the reason the myelin sheath in the brain breaks down as the cytochene has been inhibited by psychosine. psychosine, it is believed is not actively doing anything, it's rather neutral but it's paired with the cytokine (whichever way you spell it) on its way back to the brain after digestion (i'm assuming it doesn't happen at the encephalitic first and perhaps i'm wrong because if the sheath is damaged and it's sending wrong messages, misfiring and not firing as neurons die then i suppose it could be sending a mutation of sorts). the path of digestion is 3-way - encephalitic (brain), gastric (stomach), and pancreatic (pancreas). it is recorded as genetic but i'm thinking that perhaps that mutation could have also been activated by something else, a flu, an infection. she was brought to the doctor in the 7th month with an ear irritation that kept her awake around the clock. the doctor said she was fine and her mom didn't question it as, in the doc's office she made a complete turnaround and her baby was laughing and carrying on happily as a well baby does. this baby is just so beautiful and although losing muscle control, she is still very alert and very much herself so it's time-sensitive and we are all just hoping against hope that someone can put the right finger on it and that someone else knows how to treat her. with cell stem implants being so advanced today, we are probably lucky it's happened in these times as in the past, i believe before the late 70's it was referred to as failure to thrive. she passed all the milestones up til the 6th month but there was no real rapid onset so not really noticable till around the 8th when she couldn't lift her own head or sit up anymore, she is now 9months and has been diagnosed with leukodystrophy for 2 wks but has not been told which one yet. perhaps the amount of myelin with an initial mri and then a later one is necessary to see if it is demyelinating and how rapidly or slowly and perhaps that's all part of the diagnosis. the slower the neurons will fire, the more demyelination is occurring and thus they can assess if there's any arrest of destruction of the sheath or gradual or rapid loss. the first would be a little miracle. tay sach's is simila. great stem cell research has been and is being done with respect to tay sach's and they are prolonging the lives of the children till 8. now the earlier the onset, the shorter the life. so it's just the opposite of what we are used to hearing. unless no symptoms have surfaced and cells have been implanted beforehand, then the outcome is a longer life but there is still neural, retinal, etc...damage.

i took biology and chemistry in high school but i was never interested in it as it was not applied to anything.never did i think for a second that mental functioning, paralysis, and death could be caused by a single enzyme. what implications does that have for eating the right diet for your dna. now i only wish i could be in a lab making every hypothesis a reality or not. it's only through trial and error and people making educated guesses about these diseases that more breakthroughs can be made. i somehow feel this is in the diet, but that's a guess. pku is in the diet and look at those thousands that are saved, who once would have been lost, by screening newborns for it.

thx for listening, it helps me to clarify and realize there are so many out there with a family member experiencing the same thing.

you take care and pls let me know about your journey.


Posted by @kateinhawaii, Nov 14, 2011

You're staying awake learning; I'm doing the same thing by listening to Donna Gates BODY ECOLOGY Mp3s about gut health. Fascinating! This gal is great when telling you about how to manage your gut health (also important when you read Dr. Campbell McBride's books on gut health). Learn about fermented foods for gut ecology.


Posted by @deliasanderson, Nov 14, 2011

i just saw obama and our prime minister harper in hawaii. they were enjoying the weather more than their discussion on the economy. goodnight


Posted by @wdl, Jan 1, 2012

What kind of treatment are you doing? My Dr.put me on syntharoid but I am still having the same symptoms.


Posted by @kateinhawaii, Jan 2, 2012

There are very few allopathic who know how to diagnose and treat thyroid issues. Please read "Stop The Thyroid Madness" or Mark Starr's book (which I can't find). You need to get the right lab tests first and foremost. Then you have to find a good doctor, which often times will be and N.D. an O.D. or Chiropractor. Dr. David Borenstein also has a good website. You'll learn that many cannot convert T4 (Synthroid) to T3 and do better with Cytomel. I'm still dosing myself trying to find what's right for me. It's a minefield, but there are many in the same boat. Also go to Datis Karhazzian, N.D.'s forum to talk with people who have your same symptoms.


Posted by @frank1, Apr 22, 2012

I am diagnosed with Hashimoto's and we are still trying to get the dosage of levothyroxine correct. As a consequence I have developed dry eye which is driving me crazy! Unfortunately I don't have anything useful to share, YET, but I wanted to get in on this discussion. Thanks.


Posted by @chancery, May 12, 2012

KateInHawaii--I hope you get some relief soon. I have had Hashimoto's for several years, and I've given up on endocrinologists to treat this problem. Not that there may not be a good one out there, I just haven't found one. I am seeing an internist who, after many years on Synthroid, and the last few on Synthroid and Cytomel, I am finally on Nature-Throid, which is what I wanted all along. Some people may tell you to use Armour Thyroid, which is nearly identical, but I have heard some people have had to switch to Nature-Throid due to the lack of availability of Amour. Both of these products are considered natural and use thyroid extract from pigs. Synthroid and Cytomel are manufactured in labs. You may well do well on either, but I'd recommend having your doctor check both your free t4 and free t3, and make sure you are getting enough T3. This is important--many doctors will not prescribe T3 because Synthroid (T4) is supposed to convert to the needed amount of T3. Problem is that doesn't happen for lot of people. So find a good doctor (google Top Doc for this condition), pay attention to your symptoms and get all the tests. Your symptoms should dissipate with a proper dosage of T3 and T4. And, yes, adrenal glands can become fatigued or stressed and this should be treated as well, despite the fact that Mayo doesn't recognize Adrenal Fatigue (they're dead wrong and I've got test results to prove it). Find a good integrative doctor who will test you for both conditions.


Posted by @jeannem, May 12, 2012

Hello all, I've been so sick this year thinking I was dying. I have seen so many doctors and had so many tests done. An ENT has finally referred me to an Endocrinologist, I go on the 23rd. I guess my thyroid is making me feel this way. I have been on levothyroxine for years now but on a small dose. My ENT raise it from 50 to 75 but nothing good is coming from it. I need to know from you all if I'm just going crazy or do you feel as horrible as I do? Depression, cold feet, sore throat, tired and more! What can I expect from the Cardiologist? How long will it take for me to feel better? I've thought so many times of suicide in the past year or so because I feel sooo bad. Help, any suggestions or advice?


Posted by @bulldog01, Jun 24, 2012

jeanne, I feel like you not getting the relief I need! I also have hashimotos and poly cystic ovary disease and dealing with so many symptoms and it is driving my family mad, them not knowing how I feel, trying to function as a normal person, it sucks! But I have seen some improvement in my treatment but frustrated I'm not where i should be...normal! I don't know how many more medicines I can take before I go broke! but talking to people with the same symptoms helps to try something new..Good luck in finding your answers but don't give up!!!!!


Posted by @kateinhawaii, Jun 24, 2012

JeanneM - One of the threads of help has been looking at diet. I've researched and made changes based on Body Ecology by Donna Gates, and GAPS Diet by Dr. Natasha Campbell-McBride. I'm making my own cultured and fermented foods based on the research that Hashimoto's—as the epidemic it is—and other autoimmune diseases can be helped with looking at what we put in our mouth. It has helped with the mental issues and sleep patterns.. This is awful stuff, agreed, and we hate feeling junk and affecting our family and friends. The spirit is definitely impacted. Not getting help from the allopathic community is not spirit-building, and I know that the present testing is NOT enough to get to the bottom of this epidemic.


Posted by @cathyf, Jun 21, 2013

Kate, what all do you eat? Have you found a good way for weight loss?


Posted by @becca11, May 18, 2012

Diagnosed with Hashimotos autoimmune disease. The doctor office called to tell me i had hashimotos, they called in a 60 day supply of amour and said come back in 2 mos. I didn't even get a consultation explaining what Hashimotos is and what to expect or anything. Very disappointed. I researched Hashimotos online and have been trying to figure out what to eat and what not to eat. Does anyone have any advise? And why isn't there any doctors who know anything about this. I went to an Endocrinologist, she said "oh my thy.roid hasn't worked for most of my life and I'm fine" and " have you considered seeing a gastrointestinal doc" I brought my lab work to show my thyroid results and that I tested positive for autoimmune antibodies and she was asking me what that meant!!!!!!! So I just walked out. And online her website said she deals with hashimotos ! Any advise?


Posted by @m4torres, May 28, 2012

I have been dealing with Hashimoto's for over 1 year. I still am in need of trying to understand it. Most importatn thing is educate yourself and review your labs and question your doctors. No one knows your body better than you. One plus is that your on Armour. I have been on sythroid and having continous problems even though the thyroid labs read "normal". Two places which I started getting a lot of info is and believe or not a facebook locations called thyroid sexy related to actress Gina Le Nolin who is suffering from the same disease and is opening up about it with leading doctors to try and help others.
Also, from what I have been readying is typically people have other autoimmune disease associated with Hashi's. I was diagnosed with Fibromayalia but my symptoms are so bad and a pain specialist told me to see a leading edge doc in rheumatology and encridroconlogy because he suspects there is more going on then just the thyroid and fibromyalgia-my wife totally agrees. I am still looking to feel normal again and afriad when that might happen. Good luck and hopefully it won't get as bad as mine.


Posted by @kelbesmess, Oct 30, 2012

I too have been dealing with Hashimoto's for a year now. I was prescibed those lowest dose of synthroid. My HTC levels are normal as always, but my antibodies level continues to rise in the high 300's. I was told I would feel better, but that has not happened yet. Everything I read, no one says anything about your antibody level.
I wish I knew what to do.


Posted by @lakemichigan1, Aug 20, 2012

Many publications say to give up gluten. I did 1 1/2 years ago and I am less headachy and have less congestion.
Giving up dairy is good so your body operates better.

Posted by Anonymous-889badea, Nov 2, 2012

I am 49 years old and have had Hashimotos Thyroiditis for approx. 15 years now. I am assuming that this is the same as Hashimotos autoimmune disease as Hashimotos as it is an autoimmune disease. I have not ever been the same since this diagnosis as the result leaving me hypothyroid. I have been searching for answers as my health progressively gets worse throughout the years. I am still left in confusion as my family doctor says that it doesn't matter that I have been diagnosed with Hashimotos Thyroiditis and that I am hypothyroid and it is treated the same way with thyroid meds. However, when coming down with this illness I was very sick. I was diagnosed Hashimotos Throiditis, anemia, monolucleosis, Raynauds Phenomenon, arthritis, Fibromyalgia , I.B.S, etc. My list goes on! Very strange things happened to my body the first couple of years. One day my feet swelled double in size (went to ER and of course no explanation. My arms upon doing light work would swell very quick and get rather large and hurt but dissapeared as quick as it started. Laid on floor in severe pain for a half a day (my insides hurt and pain like never before in my lower stomach) came down with bouts of tendinitis in my wrist and arms often. My family Doctor said that it would go away in a few years, but I do not believe that to be true after researching Hashimotos but have found it is treated with thyroid meds. But I can not understand why my health continues to decline. I have been extremely sick since April of this year with Colengeneous Collitis which is due to my colon . Also acid reflux for may years but stomach burned so intense the pain has been unbearable. My recent diagnosis is now narcalepsy with insominia. Oh and now I have allergies! I am very confused because before April my health just tolerated everything and my weight was 120 - 125# but now am down to 104#. There is so much more but my Doctor says I am healthy even as my spine is degenerating and has narrowed due to old age shown on exray (Ha Ha) I don't find that old enough for this to have progressed to the stage it has at my age now, just turning 49. And the doc is showing no signs of two broken bones in my spine from the past year or so that was found by my pain management doc. in exrays. This is just the tip of the ice burg........go figure.... and I pray that you do not continually get progressively worse thru the years. My point is if you have an autoimmune disease I believe there is a reason for this and could more to it then just Hashimotos (Of Course this is just my opinion). As I wonder about my own diagnosis which do not count for much these days but strongly believe there is a culpurt that is causing this which revealed itself with Hashimotos. My best advice to anyone is; that in the begining of my hashimotos I did see a doc in endrocronoligy and she was concerned about finding out why I was anemic but I didn't understand why I needed endroconology and went back to my family PA. Here I am years later I now have an assigned nurse case manager provided thru my insurance from being disabled all these years strongly reccomending internal medicine as well as endroconolgy to get to the bottom of this and believes it to be autimmune. and I will say that I have read that once you have one auto immune such as Hashimottos that there can be another main autoimmune dysfunction. Hope this is helpful and my advice is to follow your own gut instincts and research; and don't settle until you are satisfied with what the docs say because you know your body best and it will not misguide you if you suspect more. I have had to result to desperate measures in having to have a nurse now go to the Doctors and be my spokes person for me. I will keep you posted of any helpful piece of information that together my nurse may help me discover of just how deep Hashimotos really may go. God Bless and Good Luck! I pray the best to all of you suffering......... And Also I have never heard any special diet for Hashimottos unless this different then Hashimottos thyroiditis


Posted by @mswanda, Mar 8, 2016

Hi, new to the group. I am 64 and have had autoimmune diagnosis. The first was, at the time, 1973, was rare diagnosis,. It was diagnosed by skin biopsy of lesions. After testing by university of Alabama the lesions were in lungs, and liver also. By the way I was 22 and had my first child, a baby boy that was six months old. All I heard was, "You may have 6 months to live if you do not go into remission." 2 years of hospital stays, some on the time in the physiciatery section" my test become normal. 1978 I gave birth to a baby girl. 6 months later same words! So sorry Scaroidosis is back, we will pray for remission".
So, with many diagnosis some that have no test I call them the " garbage can diesesis" my latest and current is Hosimoto's. Thank you if you took time to read all of this. I am going to also post a question in the next post.
Thank you so much I look for ward to reading all the post


Posted by @alysebrunella, Mar 8, 2016

Hi @mswanda, and welcome to Connect. Thanks for reaching out and sharing your journey. I'm glad you're here. I moved to your message to this thread, because as you can see, it includes other Connect members who have shared their experience with Hosimoto's.

Alyse Brunella | Community Moderator


Posted by @rosesareredmylove2016, Mar 15, 2016

Hi Kate: My name is Rose., I was diagnosed in 2000 with Graves Disease. I have the Hyperactive thryoid condition. My blood is constantly changing and my T4 and T3 get checked every 6 months by my primary care doctor.
When I was diagnosed it was scary, and I had no idea how to adjust too this diagnosis. It took lots of reading and speaking with doctors to figure out what exactly my body was doing.Every day is different for me and even more so now. In 2014 I was diagnosed with a 3.5 centimeter tumor in my left inner ear and pushing on my brain stem. i had Brain surgery March 10, 2014. I now have imbalance issues and needed to adjust my exercise routines or I end up on the floor, or just falling over. I have recently started running , but that took 6 months before I could run 10 feet without feeling like the world was tilting.I have been using a product called THRIVE and its been a blessing for me. Its brought back some of my balance and I stay focused more and I have energy where before using this product I felt drained because of my Graves disease. I sleep better and I am starting to do a little more every day. My blood levels with THRIVE are steady, and I've been able to keep a steady weight instead of bouncing all over the charts.I feel more positive than I did a year ago, and I just met my 2 year anniversary having had Brain surgery.My last labs at my doctors were good and she is very positive I'm doing better since the THRIVE.


Posted by @kateinhawaii, Mar 15, 2016

You go girl!! Eat lots root veges. Make sure morning before rising temp is normal. Sugar n carbs way down or nil in prepared foods.

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