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Hashimotos- "normal" Levels But Major Symptoms?
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Does anybody here have hashimotos with "normal" levels(other than positive antibodies) and still have major symptoms. I was diagnosed with hashimotos and went gluten free last may. I thought it had to be celiac disease because my thyroid levels were "normal" and I was having crazy symptoms. I have been gluten free for 8 months and have definately gotten better but Im still not close to 100%. Its mostly mental issues(brain fog/etc.) that doesnt seem to go away. My question is could this be because I need thyroid medication? I have heard that with hashimotos you want your levels to be in the top 75% and my FT3/4 were a bit low. Also my TSH was like 2.2 last I checked and I heard you want it to be around 1. Could this be causing these symptoms? I dont feel normal at all and it seems crazy that low normal levels could be causing this!! Anybody have any insight or suggestions?

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If you read the book Stop The Thyroid Madness you will have a better understanding of what you need to do. They also have an excellent website and facebook group. You can also read the books by Dr. Shames or Dr. Langer.

If you have antibodies, you have Hashimoto's. Your TSH needs to be around 1.0 to better supress the antibodies.

Are you on Synthroid or only a T4 medication? If so, that may be part of your problem. Look into natural desicated thyroid (NP-Thyorid or Naturthroid). It may be better for you. Or, take additional T3 (but make sure your doctor understands how to administer it properly....time release T3 is usually not a good choice and many doctors like it, but it drives patients crazy).

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You just described me to a T. Problem is, My Dr. had my TSH totally suppressed with T3/T4 and it didn't help. An endo just put me on Armour but I'm not very hopeful.

I think my issue might be subclinical adrenal autoimmunity and slightly low cortisol. I keep reading lists of so-called adrenal fatigue symptoms and they fit me. It turns out that adrenal autoimmunity is more likely with Hashimoto's but subclinical adrenal problems are sort of "off the radar" for mainstream doctors. They are aware of Addison's, but you only get Addison's disease when your adrenals are 90% destroyed. What happens before that??? Do we get dizzy and generally feel like crap???

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Does anybody here have hashimotos with "normal" levels(other than positive antibodies) and still have major symptoms. I was diagnosed with hashimotos and went gluten free last may. I thought it had to be celiac disease because my thyroid levels were "normal" and I was having crazy symptoms. I have been gluten free for 8 months and have definately gotten better but Im still not close to 100%. Its mostly mental issues(brain fog/etc.) that doesnt seem to go away. My question is could this be because I need thyroid medication? I have heard that with hashimotos you want your levels to be in the top 75% and my FT3/4 were a bit low. Also my TSH was like 2.2 last I checked and I heard you want it to be around 1. Could this be causing these symptoms? I dont feel normal at all and it seems crazy that low normal levels could be causing this!! Anybody have any insight or suggestions?

I was just going to post about the exact same issues. I am fatigued and big time brain fog. I can't even remember what I am trying to say mid-sentence. I am completely off gluten and my stomach pains did go away (neg blood test for celiacs). I am seeing my endo this Friday, and was looking for advice on what to say. My TSH levels are about the same as yours (2.3). I do not feel normal either. My thyroid is enlarged with a goiter. I am gaining weight despite exercising 5 times a week (running and weights). I am hoping my endo goes by how I feel and not just bloodwork.

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You just described me to a T. Problem is, My Dr. had my TSH totally suppressed with T3/T4 and it didn't help. An endo just put me on Armour but I'm not very hopeful.

I think my issue might be subclinical adrenal autoimmunity and slightly low cortisol. I keep reading lists of so-called adrenal fatigue symptoms and they fit me. It turns out that adrenal autoimmunity is more likely with Hashimoto's but subclinical adrenal problems are sort of "off the radar" for mainstream doctors. They are aware of Addison's, but you only get Addison's disease when your adrenals are 90% destroyed. What happens before that??? Do we get dizzy and generally feel like crap???

I have never heard of Addison's, will look it up. I am hoping my endo will put me on armour as well. What are some ways to go about discussing this with my endo (without sounding like I have no idea what I am talking about)?

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I have never heard of Addison's, will look it up. I am hoping my endo will put me on armour as well. What are some ways to go about discussing this with my endo (without sounding like I have no idea what I am talking about)?

I don't know that you can. :( Mine is testing 8am serum cortisol, which is a near-useless measurement, just to rule out that something isn't horribly wrong with my adrenals. I will be genuinely surprised if my cortisol is anything other than low-normal because I don't have enough adrenal symptoms, only the dizziness.

I just got the Stop the Thyroid Madness book and it has a section on adrenals that you might find helpful. You know about http://www.stopthethyroidmadness.com/ right?

My endo would really like me to see someone who knows autoimmunity, but he says all the rheumatologists at the clinic where he works are only interested in people with joint pain. (Not sure why he's clueless about autoimmunity since Addison's, Hashimoto's, Graves', and Type 1 diabetes are all endocrine diseases.) We talked about the possibility of a neurologist but neither of us think a neurologist would see a deficit in cognitive function without any sort of baseline because I generally test high on that sort of thing.

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I don't know that you can. :( Mine is testing 8am serum cortisol, which is a near-useless measurement, just to rule out that something isn't horribly wrong with my adrenals. I will be genuinely surprised if my cortisol is anything other than low-normal because I don't have enough adrenal symptoms, only the dizziness.

I just got the Stop the Thyroid Madness book and it has a section on adrenals that you might find helpful. You know about http://www.stopthethyroidmadness.com/ right?

My endo would really like me to see someone who knows autoimmunity, but he says all the rheumatologists at the clinic where he works are only interested in people with joint pain. (Not sure why he's clueless about autoimmunity since Addison's, Hashimoto's, Graves', and Type 1 diabetes are all endocrine diseases.) We talked about the possibility of a neurologist but neither of us think a neurologist would see a deficit in cognitive function without any sort of baseline because I generally test high on that sort of thing.

I found an endocrinologist with really good reviews, who prescribes armour thyroid based on symptoms and labs (not just labs). I am in the process of obtaining all my medical records to bring to that appt. on Monday. I am hoping that helps! Thanks for the link to stop the madness-It has been very helpful!!!

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    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
    • Mnoosh, I had swollen lymph nodes prior to celiac dx and for a while after going gluten free. My neck as well as groin. The groin ones were the worst. Guess what? All gone! It's hard to recall a time line & consider that everyone is different but I think mine completely resolved within a year.  You've been given great information. Just breathe and then again, breathe. You're going to be fine. 
    • It is the only thing you have eaten, so it can't be anything else?  I eat it with no issues so I am not sure how you can be certain that is the problem.  All I am saying is that its sort of "your word against mine and the company's word".  
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