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KateInHawaii
@kateinhawaii

Posts: 6
Joined: Nov 03, 2011

Hashimoto's

Posted by @kateinhawaii, 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

Liked by CathyF, JeanneM

REPLY

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.

@deliasanderson

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.

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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.”

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.

@deliasanderson

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.

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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.

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

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

@wdl

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

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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.

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.

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.

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?

@jeannem

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?

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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!!!!!

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.

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

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?

@becca11

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?

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Hi,
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 healthboards.com 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.

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