Are you being adequately treated/medicated to relieve hypo symptoms? Please post your thyroid test results and reference ranges shown on the lab report.
I am seeing an endocrinologist and taking Levoxyl 125 and was told by the surgeon who did the partial thyroidectomy and my endo that i have Hashimoto's, that is what caused the nodule that destroyed 1/4 of my thyroid.
Welcome, "hashi53", your new here!- (Member since Jan 2011).
Lesson #1 about thyroid, don't just believe all doctors thyroid opinions without researching your issue.
Many times they say labs are normal when they are not, and no all patients learn about desiphering their lab results.
There is plenty of proof that thyroid lab ranges are to broad for the specific individual. Its an average of the population and no one knows where your body's optimal levels were before thyroid issues arose. Posting your lab results here can help you understand, were doctors fail to communicate this with you due to their biased opinions or lack of
knowledge - scary but true.
So you must have had elevated thyroid antibodies along with hypothyroid symptoms that led to the Dxing of Hashie.
With Hashimoto disease, Thyroid antibodies slowly destroy the thyroid gland , that is what they do to all of us with this condition. So most slowly increase meds over the years to offset the slowly progressing lack of thyroid hormones. And most Hashis patients develop nodules. It is the antibodies that deterierate the thyroid, not the nodules. Some people without antibodies can actually have thyroid nodules!
Its not very common, (very uncommon actually) to have part of your thyroid removed due to Hashimoto. Well, unless your nodules were huge and could not be removed without part of the gland itself.
The 'Free T3' test, which most docs dont do unless asked, will reveal T3 levels. T3 levels effect digestion. Just getting TSH and T4 tested is not enough. T4 is converted to T3 in effiecient bodies. With part of your thyroid missing , your not as effiecient as your conversion process once was.
Your question, yes many people feel better without gluten, with or without Hashimoto. But first you need to understand if your thyroid is being treated optimally. Digestion and thyroid is about T3.
Many on T4 meds only have IBS, acid reflux, constipation, bloating - that go away after T3 is elevated above T4. But it seems endos would rather send us to a gastroenteritis to further drain our pocket books instead of looking at T3. Been there, done that. Fixed it by researching myself. The 'abuse' of 'practicing' Modern Medicine has become a joke.
My TSH was high, if memory serves 6 something...and that is why my endo upped my Levoxyl from 112 to 125 and she discussed that it was too bad the surgeon didn't removed the whole thyroid instead of 1/4. she ordered another sonogram in a couple months to take a look again at how it is doing.
Those of us that end up with a succesful thyroid treatment plan have learned about our condition, this means asking for and keeping copies of all lab work (your right and the law). This is essential.
You need to ask them why. Removing the thyroid is only generally practiced for Graves hyper thyroid not Hashimoto. This is a fact, not an opinion of mine. Dont just take their word for it.
Sorry for being so straight forward, I'm not so sure you totally understand my last reply. Upping thyroid med with Hashimoto is normal. We all 'up' the med dose till the thyroid dies off from antibodies over a course of 10-30 years, then med is stabilized as we are totally dependent on it. Did they not tell you this? Many Docs do not communicate well.
I had my first appt with an endo about 18 months ago...she slowly upped meds every time I saw her...then last summer she left and her PA thought it would be a good idea to do a sonogram, they found a nodule and i had surgery the end of September. The surgeon said he took 1/4 of my thyroid due to Hashimoto's. He said those words. I didn't make it up.
Five years ago a Doctor said he thought I might have hashimoto's but nothing was done until like I said another doctor reffered me to an endo.
I have a friend in my area who felt dreadful for years and then she finally ended up at an endo. and she had all but two buds removed to cover her parathyroid and what was the diagnosis? Hashimoto's.
I am thrilled to learn all I can about thyroiod disease and Hashimoto's but i don't think it is necessary to be condescending to each other we have enough to deal with day to day.
I am not being condescending at all, we all learn here. I'm trying to help you understand. I knew very minimal about thyroid care when I was Dx'ed, still learning today. At one point a doc gave up on me saying I had Fibromyalgia, with there is no lab test to confirm. People here helped me, by telling me what I didn't know. I learned that my Hashimotos condition was under treated since Dxing 10 years prior.
It is very unfortunate that we need to learn about this disease before we hand our health over to doctors. Many people are not aware that is our right to get copies of labs. This is help full for you to have copies of labs.
Many, including myself, found the details of thyroid disease confusing at first. It can be info overload compared to what the doctors tell us. I am surprised at your doctors explanation on the decision. The nodule must have been substantial in size.
Hoshimotos itself, if treated properly (not many docs know how to treat all Hashi patients) is a livable condition with thyroid intact, not usually a justifiable reason for removal.
There are many details that help with feeling better. One is for your doctor and yourself to track your Free T3 levels. For many that is the answer to feeling better as many doctors do not even test this, as they might be un-informed them selves. Many doctors over look many solutions to treating thyroid disease.
I do know someone with gluten intolerance, and gluten effected her thyroid hormone out-put. She does not have Hashimoto, had non-autoimmune hypothyroid from gluten. With her, no gluten, no hypo.
I have tried the gluten-free food plan a couple of times (short term) and I did feel better although I'm not sure (and don't think) the "feel better" was related to my auto-immune condition (hashis) Gluten is a protein founf in many grains that give dough & other products their elasticity. The thought that gluten free may be better for hashis people,is that the molecular structure of the proteins in gluten are similar to that of the thyroid tissue. The antibodies that attack the thyroid are increased because 60% of the immune system is located in the digestive tract according to Datis Kharrazian also known as Dr. K and explained in hos book "Why Do I Still Have Thyroid Symptoms When My Lab Tests are Normal?" I bought the book but am undecided about his medical opinions. It seems to be quite controversial on this forum - the gluten issue.
But you know, this is a journey to wellness and I like to read what others have to and consider it myself.
On another note - I thought rice was gluten-free. I used rice or quinoa spaghetti during my gluten-free test periods.
Something else I do to help alleviate the constipation that often afflicts me regardless of my good labs is using scented epsom salts in my bath (in addition to taking adequate magnesium with my calcium)
I believe that one of the causes of weight gain with hypothyroid is our sluggish digestive systems in addition to the metabolis slow-down of every cell in our body.
Also...scented epsom salts is a nice way to pamper ourselves - heaven knows we need those relaxing moments!
Now to get back to your question - I do believe going gluten-free or even reducing it, as well as eliminating (or reducing) refined sugar & processed foods do have a positive impact on anyone - hashimotos patient or not. Although I do eat gluten containing foods from time to time, I remain cautious, and try to not eat it on a daily basis to give my digestive system a break.
Not everyone will agree, but thats what I do : )
I have been gluten free for years, even before I even knew I had a thyroid problem so it is not a sacrifice...I used to have red itchy blisters on my face and headaches and migraines and could not sit still and stomach problems and without gluten those things (except stomach issues) have disappeared from my life and I will never ingest gluten again.
I don't do alcohol, but hadn't for years so that again was no sacrifice and eliminating caffeine was no bigggee...sugar was hard but I have not had candy for six months and I was a candyaholic so that was hard...and so it goes...no soy, no eggs...and now no grains...and the distended stomach situation is better...so for me it works.
Getting late...good night everyone. HUGS
I have went gluten free due to hashimotos, and I was having an allergy to everything. If I accidentally get glutened now I get really sick. I have been going through a hashimotos health crisis in the last 6 months. I would say that I don't think gluten free has helped the hashimotos, but it must have helped it a little because I barely take any of my meds now. I read the book saying it was helpful, but again, I'm not sure it really helped me. The people here are really helpful and can get you on the right track to taking meds and getting you feeling where you need to be. Take care.
thanks Danie...every time we share we start to understand and learn. So again, thanks.
I went gluten free many years before I was diagnosed with Hashimoto's. At the time, it helped me feel better but only marginally. It was the underlying Hashi's not being diagnosed which caused MORE problems than having gluten in my diet. That is not to say, the gluten intolerance was fun!. The symptoms of eating any gluten were terrible! But the Hashi's was worse. In fact it was a year after stopping gluten that I really started to question, was it something else and not just gluten intolerance.
Gluten free will not stop/cure/help the Hashimoto's. Hashimoto anti-bodies attack thyroid tissue and that is all. Gluten antibodies attack the intestine and that is all. You feel lousy on both counts as the antibodies are rampant and make you feel rotten (Think flu, your body sends out antibodies to kill off the bad germ, and your body feels like a war zone)
MANY people who have Hashi's also are gluten intolerant, but they are not the same thing. It seems the body when suffering one auto-immune disease sets itself up to not recognise the natural processes in our bodies. The immune system is very complex.
I hate to say it, but my Hashimoto's (I had cancer and multi-nodules and large goitre) caused me to lose my thyroid. The damage was great and it was like a rock and too damaged to save. So even without the cancer in it, it was going bye bye anyway.
I still have high antibodies 3 years after my thyroid was removed.
That is NOT to say that is the case for all Hashi patients. No way, no how! Some live the rest of their lives with their thryoids intact and do well on meds. It is highly individual, and no one should EVER read into one person's experience as the norm for everyone else.
Eat well, live well, recognise the good and bad days and live around them, that's the life of a Hashimoto patient.
AMEN sister...I get that we are stuck with having Hashimoto's for life and you are a perfect example of a person who has it, does not have your thyroid, and yet still has it...I am attempting to minimize the flare ups, if i might offer that as a way to describe the attacks...and improve my quality of life and for me it is by eliminating substances that don't agree with my insides and that has given me a better quality of life as a Hashimoto person. PEACE AND LOVE
One week grain-free and my stomache has been less distended...of course i did coincidentally have a colonoscopy last week so I might want to wait a few weeks and report back then...but I think it is helping me. How are you all?
Reporting in after a couple weeks of this grain-free with the exception of ingesting rice now and then...and it is really making a difference for me...I make buckwheat pancakes, hot cereal, bread, and even made homemade noodles today...it is making a difference and for me this has been amazing. I enjoy working with buckwheat and eating it too.
I have even lost a few pounds...so win win...I am taking my Levoxyl before bed still and that has helped me to not eat during the evening.
I do some exercises in the morning and in the afternoon try to take a walk.
I know it isn't easy to have hypothyroidism as a result of Hashimoto's disease but I am giving it my all...staying away from substances that cause inflammation and for me I am noticing a better quality of life...how are you all doing? And what are you doing to not exactly beat this disease but not let it beat you?
Good for you! I noticed a ton of weight fall off when I gave up gluten.
For me today is not so good. I went on a big hike and I knew it would affect me today, but I am getting tired of not being out there so did it anyway. I decided this year was the Year of No Ecxuses. So, am doing stuff I normally say, 'Oh but I will be exhausted if I do that' I get exhausted anyway so why not do something fun in the getting!
GOOD FOR YOU! YOU GO, GIRL! YUP! I am with you...we must overcome in ways that empower us to feel better about ourselves...YES WE CAN! HUGS!
I FEEL SO MUCH BETTER. Yes, I eat cream of buckwheat for breakfast, make baked goods with buckwheat flour and am feeling ter-ri-fic!
I avoid nuts too...I know it seems so limited...but it is worth it...avoiding substances that might potentially inflame my insides or be confused with thryoid tissue and cause a hashimoto attack...no thanks.
no tomatoes, limited potatoes, no grains, no soy, no eggs, no sugar, no gluten, no dairy, no casein, no raw cabbage or broccoli or cauliflower, no nuts, caffeine, no alcohol, no tea (herbal is ok)...I think that's it...wow...it's a lot BUT I feel good so it is well worth it.
somefoodsarenotmyfriends.blogspot.com is where i blog about my food issues/thyroid/hashimoto stuff.
I have Hash's also with Chronic Lymes.
Can you please send me your recipe for buckwheat pancakes?
I eat brown rice and am gluten free. I don't eat tomatoes, potatoes (which are pro-inflammatory), soy, sugar, dairy products, nuts(I'm allergic), red meat and no alchol etc.
Look into potatoes. I subsituted it for Sweet Potatoes and Yams which are really not potatoes.
I see all the foods that we cant eat on a gluten free diet, how about the foods we can eat? You listed all sorts of things you cant eat, and when I think of eating those are all the foods I can think of, so whats left? can you give some examples of days of your menu?
I am not on just a gluten free diet...that is what i started on but the other eliminations help me with the inflammation and I felt bad after ingesting them... I imagine it is trial and error for everyone.
but what good question, Jennifer...lol...I am still overweight so I must be eating something.
Lately for breakfast I have been having cream of buckwheat with coconut milk and cinnamon, ginger, and nutmeg and vanilla. I have water to drink and decaf coffee with a little coconut milk.
Yesterday for lunch I had chicken chow mein (I did have some rice with it) when we dined out, water and decaf coffee.
I had 2 buckwheat cinnamon buns for a snack.
For dinner I made beef stew (thickened with tapioca flour) and a tossed salad. I had water and then decaf coffee.
I had spice tea in the evening.
The day before that I had the cream of buckwheat in the morning and taco salad (no tomatoes, cheese or salsa or corn chips), and for dinner we had boiled vegetables and ring bologna.
And the day before that I had the buckwheat hot cereal, plate of sliced beef and a tossed salad for lunch and homemade buckwheat ham and Daiya (fake) cheese pizza for dinner with a side of 3 bean salad.
I started writing everything down on March 1st so that is how I know what I had.
Today I am making up some buckwheat pancakes that i can have as pancakes or use like flatbread. And later on i will make some homemade buckwheat noodles in my pasta machine...why? because it is fun for me.
I blog at somefoodsarenotmyfriends.blogspot.com if that is of further interest to you.
I am sure this might not be for everyone, but it seems to be working well for me. I ate whatever i wanted to for the first 50 years of my life and felt lousy most/all of the time so for me these eliminations are not a big deal anymore...I just want to feel better...good...and improve my quality of life...Hashimoto's? I got you covered...you're not going to beat me down anymore.
More to come...thanks for asking, Jennifer. Good luck!
PS BTW I have not had a cold or flu or fever or respiratory or stomach upset in a long long time...this is huge for me...yes, I have an autoimmune disease which caused me to be hypothyroid but these common ailments seem to no longer be a part of my life and I suspect I have the eliminations to give the credit to.
I forgot to add that I do eat an apple a day and sometimes have unsweetened applesauce.
Good for you! I find it hard to do this because I am poor to put it bluntly. That stuff is expensive, isnt it, even fresh fruit and veggies in the quantities that this would require is expensive. And I tried Gluten free for a week and it seemed to have absolutely no effect and had a test done to see if I had gluten intolerance, and No I didnt, but I want to try something that will help me, and I dont really know where to start, but I suspect food could be the culprit, so I am open to any ideas, that are not so expensive, and something more than a gluten free diet/and or something different than a gluten free diet. I suspect I have some inflamation going on in my body since it hurts all the time, so I am trying to figure out , what I should try eliminating and what I can keep. I also have 2 kids so, I have to also cater to them. any suggestions?