For my fellow Hashimoto's Thyroiditis folks...

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  • lcfairbairn74
    lcfairbairn74 Posts: 412 Member
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    This really struck a chord with me. I have hypothyroidism and fibromyalgia so all those symptoms are so familiar! I am now being tested for a pituitary tumor as all my pituitary hormones have gone haywire too. It's sometimes nice to know you aren't alone!
  • kcahill1006
    kcahill1006 Posts: 6 Member
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    I just found out I have Hashimoto's this last week, though I've had long-running thyroid issues for the past few years. I've been wondering why I've never been able to balance out my thyroid and stay on a dosage for very long before having to change it up again but now it makes sense. I'm beginning to eliminate gluten from my diet and I hope that helps.
    Last year I went to a 'holistic nutritionist' of sorts to see if my underlyilng stomach issues that no doctor has been able to pin down could be solved by diet changes. She did the muscular resistance test and determined that I had wheat, gluten, spelt even though my celiac test from my GI came back normal, as well as peanut, and dairy sensitivities. I tried a diet without all of those and didn't make a difference on my stomach issues so I went back to normal. Now I am wishing I had stayed on it!

    My celiac blood test came back as "normal" too...but the false negative rates on those test are very high. I had positive antibodies in my intestines - which it makes more sense to look for antibodies there since that's where the trouble lies. It took about 3 weeks to start to feel better after cutting out gluten for me. It was like I woke up one day and felt amazing. Stick it out...you will start to feel better :)

    I'm definitely looking forward to feeling better, that's for sure. I was just recently switched from a compounded 2 grain to straight armour. I'm hoping to see results with the medication changes but my levels always go haywire so we'll just have to wait and see!
  • annakow
    annakow Posts: 385 Member
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    I am living with underactive thyroid, it's so tireing, I am so sorry you feel bad...I know exactly how you feel :(
  • Pixi_Rex
    Pixi_Rex Posts: 1,676 Member
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    Its a roller coaster ride I would like to get off now please and thanks.

    After 10 years of battling thyroid issues I ALMOST have my doctor convinced that he wants take care of it once and for all.. in the last year my thyroid, dipped, leveled out, dipped, spiked, dipped and recently dipped again all while taking medication for it. I even had a Thyroid Cancer scare in the fall so its not fun, and I really wish more people understood that I am not making this stuff up.

    I am now currently cutting out bread and pata type carbs to see if it helps because god only knows that everything else I have tried hasn't.

    OP thanks for posting!
  • RoseTears143
    RoseTears143 Posts: 1,121 Member
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    I just found out I have Hashimoto's this last week, though I've had long-running thyroid issues for the past few years. I've been wondering why I've never been able to balance out my thyroid and stay on a dosage for very long before having to change it up again but now it makes sense. I'm beginning to eliminate gluten from my diet and I hope that helps.
    Last year I went to a 'holistic nutritionist' of sorts to see if my underlyilng stomach issues that no doctor has been able to pin down could be solved by diet changes. She did the muscular resistance test and determined that I had wheat, gluten, spelt even though my celiac test from my GI came back normal, as well as peanut, and dairy sensitivities. I tried a diet without all of those and didn't make a difference on my stomach issues so I went back to normal. Now I am wishing I had stayed on it!

    My celiac blood test came back as "normal" too...but the false negative rates on those test are very high. I had positive antibodies in my intestines - which it makes more sense to look for antibodies there since that's where the trouble lies. It took about 3 weeks to start to feel better after cutting out gluten for me. It was like I woke up one day and felt amazing. Stick it out...you will start to feel better :)

    I'm definitely looking forward to feeling better, that's for sure. I was just recently switched from a compounded 2 grain to straight armour. I'm hoping to see results with the medication changes but my levels always go haywire so we'll just have to wait and see!

    I'm glad you got ion NDT actually. I didn't start feeling better until 8 months after being on Armour...I really think I had Reverse T3 issues that took awhile to clear up that my endo didn't look for. But now I'm on Westhroid-P as it only has 3 ingredients. But I feel so much better on NDT that I ever dreamed of feeling on levo or synth-crap!!
  • RoseTears143
    RoseTears143 Posts: 1,121 Member
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    This really struck a chord with me. I have hypothyroidism and fibromyalgia so all those symptoms are so familiar! I am now being tested for a pituitary tumor as all my pituitary hormones have gone haywire too. It's sometimes nice to know you aren't alone!

    awww what a combo. Yes, you are definitely NOT alone!! :flowerforyou:
  • RoseTears143
    RoseTears143 Posts: 1,121 Member
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    I am living with underactive thyroid, it's so tireing, I am so sorry you feel bad...I know exactly how you feel :(
    It is exhausting. But take comfort that you aren't alone either :)
    Its a roller coaster ride I would like to get off now please and thanks.

    After 10 years of battling thyroid issues I ALMOST have my doctor convinced that he wants take care of it once and for all.. in the last year my thyroid, dipped, leveled out, dipped, spiked, dipped and recently dipped again all while taking medication for it. I even had a Thyroid Cancer scare in the fall so its not fun, and I really wish more people understood that I am not making this stuff up.

    I am now currently cutting out bread and pata type carbs to see if it helps because god only knows that everything else I have tried hasn't.

    OP thanks for posting!
    Well, I'm glad your Dr is actually looking at you more seriously now...but that sucks it's taken all of the cycling for you to get him to listen to you. smh. I hate that!!! And yes, with Hashi's gluten can rev the fire on your attacks so cutting that out can really help. I'm proof of that. Since cutting gluten out I haven't had a single hypo swing in about 2 1/2 months now. I mean...I have some days where i'm a little sluggish, but NOWHERE near as bad as my swings used to get.

    And you are welcome <3
  • kcahill1006
    kcahill1006 Posts: 6 Member
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    I just found out I have Hashimoto's this last week, though I've had long-running thyroid issues for the past few years. I've been wondering why I've never been able to balance out my thyroid and stay on a dosage for very long before having to change it up again but now it makes sense. I'm beginning to eliminate gluten from my diet and I hope that helps.
    Last year I went to a 'holistic nutritionist' of sorts to see if my underlyilng stomach issues that no doctor has been able to pin down could be solved by diet changes. She did the muscular resistance test and determined that I had wheat, gluten, spelt even though my celiac test from my GI came back normal, as well as peanut, and dairy sensitivities. I tried a diet without all of those and didn't make a difference on my stomach issues so I went back to normal. Now I am wishing I had stayed on it!

    I found a new GI doc who gave me a range of tests, and has diagnosed me with gastroparesis...hallelujah! He also referred me to an endocrinologist who thought my TSH levels were way too low and my dosage of Armour was too high--I was on 150 gr of Armour. He took me off thyroid meds for a week and has since put me on Synthroid. Honestly, I'm a little nervous about how Synthroid will make me feel because I've heard that a lot of people have never felt better than when they were on Armour...but my heart rate was so high that I agree with him that I was on too high a dosage...my resting heart rate was between 102 & 135!
  • RoseTears143
    RoseTears143 Posts: 1,121 Member
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    I just found out I have Hashimoto's this last week, though I've had long-running thyroid issues for the past few years. I've been wondering why I've never been able to balance out my thyroid and stay on a dosage for very long before having to change it up again but now it makes sense. I'm beginning to eliminate gluten from my diet and I hope that helps.
    Last year I went to a 'holistic nutritionist' of sorts to see if my underlyilng stomach issues that no doctor has been able to pin down could be solved by diet changes. She did the muscular resistance test and determined that I had wheat, gluten, spelt even though my celiac test from my GI came back normal, as well as peanut, and dairy sensitivities. I tried a diet without all of those and didn't make a difference on my stomach issues so I went back to normal. Now I am wishing I had stayed on it!

    I'm glad you found a doc to listen! I personally think taking you off of Armour and putting you on Synthroid was a bit drastic, he could have just lowered your dose. But maybe you will be OK on Synthroid. Personally, it didn't do anything for me other than make my labs look normal. I didn't feel any different because my body wasn't actually using the hormone.

    My fingers are crossed for you!!
    I found a new GI doc who gave me a range of tests, and has diagnosed me with gastroparesis...hallelujah! He also referred me to an endocrinologist who thought my TSH levels were way too low and my dosage of Armour was too high--I was on 150 gr of Armour. He took me off thyroid meds for a week and has since put me on Synthroid. Honestly, I'm a little nervous about how Synthroid will make me feel because I've heard that a lot of people have never felt better than when they were on Armour...but my heart rate was so high that I agree with him that I was on too high a dosage...my resting heart rate was between 102 & 135!
    [/quote]
  • mjslazak
    mjslazak Posts: 179 Member
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    Thanks for this!

    I was just diagnosed YESTERDAY with hypothyroid and will have more blood tests tomorrow, but the endocrinologist is CERTAIN I have Hashis as well. And every description of the disease (and its "friends") sound familiar to me/sound like me. I'm both relieved and annoyed to have a diagnosis. Relieved, because I know I'm not crazy, but annoyed to think I may need to work harder to keep symptoms at bay. I feel grateful that my issues have not been completely debilitating so far, but am happy to know more NOW as opposed to later when it might be more of a puzzle.

    And also grateful to find a community to belong to in this part of the journey.

    Thank you again!
  • merton
    merton Posts: 4 Member
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    I have Hashimoto's too- it's such a pain isn't it!? I was diagnosed about three years ago and was so happy to finally know what was the matter with me; for so long I just thought I was crazy, depressed or just plain lazy. I've been taking quite a bit of supplements and thryroid meds, getting levels tested regularly, seeing an amazing dr. and while I definitely feel better it seems harder than ever to loose any weight. I'm sure that has something to do with getting older but it seems a bit extreme. I'm getting really frustrated.
  • Airadet
    Airadet Posts: 31 Member
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    I was diagnosed with Hashimoto's at 18. :/ Since then, I have been gaining five pounds here or there, and it is driving me insane. I am eating at a calorie deficit and exercising, no change. As if having the multi-nodular goiter in my neck wasn't enough.

    My neck used to be my favorite part of my body. If I could do whatever I wanted, I would have my thyroid removed and be placed on full replacement..

    I freeze all the time, have regular migraines, and have TMJ as well. I just feel so alienated from other "normal" people my age. I used to feel invincible! Not anymore.

    I also don't have any insurance, and can't afford to go the doctor. I was rejected for my state's health care. So, I'm not receiving any treatment and I have no idea if the condition has progressed or what since I lost my insurance.
  • She_Hulk
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    I just found out I have Hashimoto's this last week, though I've had long-running thyroid issues for the past few years. I've been wondering why I've never been able to balance out my thyroid and stay on a dosage for very long before having to change it up again but now it makes sense. I'm beginning to eliminate gluten from my diet and I hope that helps.
    Last year I went to a 'holistic nutritionist' of sorts to see if my underlyilng stomach issues that no doctor has been able to pin down could be solved by diet changes. She did the muscular resistance test and determined that I had wheat, gluten, spelt even though my celiac test from my GI came back normal, as well as peanut, and dairy sensitivities. I tried a diet without all of those and didn't make a difference on my stomach issues so I went back to normal. Now I am wishing I had stayed on it!

    I'm glad you found a doc to listen! I personally think taking you off of Armour and putting you on Synthroid was a bit drastic, he could have just lowered your dose. But maybe you will be OK on Synthroid. Personally, it didn't do anything for me other than make my labs look normal. I didn't feel any different because my body wasn't actually using the hormone.

    My fingers are crossed for you!!
    I found a new GI doc who gave me a range of tests, and has diagnosed me with gastroparesis...hallelujah! He also referred me to an endocrinologist who thought my TSH levels were way too low and my dosage of Armour was too high--I was on 150 gr of Armour. He took me off thyroid meds for a week and has since put me on Synthroid. Honestly, I'm a little nervous about how Synthroid will make me feel because I've heard that a lot of people have never felt better than when they were on Armour...but my heart rate was so high that I agree with him that I was on too high a dosage...my resting heart rate was between 102 & 135!
    [/quote]

    I was taking Synthroid and now I'm on Armour 60mg plus 15 mg (since they don't have an actual 75mg dosage). I feel better on the Armour, but everyone is different. Best wishes with your switch. Many people do better with Synthroid.

    By the way, thank you so much for posting this. Yes, it is such a roller coaster ride. It took years to get me on the right medication and dosage. Those were very tough years that I would never want to go through again. Ever. I still get depressed just remembering. I'm so grateful to have a wonderful doctor now that's on top of things and he checks my levels every 6 months.

    Thanks again for the post and best wishes to all!
  • sinoodle
    sinoodle Posts: 8 Member
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    I've had it for about 8 years now, last ultrasound showed I have no thyroid left, all gone...I've been on Synthroid the whole time with the dosage going up and down. To be totally honest, I had no idea I had it, until a routine blood test showed my levels were wayyyyy off. I really think lots of people have this problem, but have no idea what's going on.

    The real pain for those trying to drop the pounds, is that your dosage is most likely weight based ( synthroid is ) . So as you lose weight, you should get your levels checked more frequently. After losing 12 lbs, and my dosage moved from 175 to 150. If my dosage is wrong ( too high ) I tend to stare into empty space for long periods of time.
  • nannymarty04
    nannymarty04 Posts: 33 Member
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    thank you for this information, it has been very helpful,
  • walk_fit
    walk_fit Posts: 83 Member
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    My husband April 2013 found his TSH was 12.5 and TPO was 1200 range.Immeditely he went on gluten free diet, brazil nut, resveretrol vit D supplements along with synthroid 50. His vit D was low. 3 months TSH was 3.5, TPO 80. The only thing I notice After 6 months is he was thin but now thinner 183lbs, slighly low moods. Definetely being gluten free is no joke hard on the long run but he continues it also noted his pulse is always Round 57-60. He is not an athelete. So there is always hope.
  • annakow
    annakow Posts: 385 Member
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    Its all excuses..there is no disease to make you fat, there are few who can trigger some weight gain while you eat wrong food. I am underactive too. Just eat less and exercise
  • hOw2lozeAgiN10dAze
    hOw2lozeAgiN10dAze Posts: 1,841 Member
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    :drinker: Cheers! I've been hypo since age 13. I get labs done today, keep your fingers crossed for an upped med dosage for meeeeeeee!
  • RoseTears143
    RoseTears143 Posts: 1,121 Member
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    Its all excuses..there is no disease to make you fat, there are few who can trigger some weight gain while you eat wrong food. I am underactive too. Just eat less and exercise

    This just shows how ignorant you are to the disease. Maybe do some research before spouting off information you know nothing about. Just ask the thousands of people with Hashimoto's if it did (or did not) make them gain weight.

    Yes it has some to do with not having energy to exercise, and with what you eat - but more than you obviously know this condition DOES mess up your body and your hormones which make the person gain weight a lot of the time. It affects everyone differently.

    ET - being hypo is NOT the same thing as having Hashi's either
  • RoseTears143
    RoseTears143 Posts: 1,121 Member
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    I'm so glad I've found more butterfly chasers! <3:) I hope you all find support and comfort here, I am actually contemplating creating a group now...yup...gonna do it. stay tuned for the link :D