Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Hashimotos- "normal" Levels But Major Symptoms?
0

7 posts in this topic

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?

0

Share this post


Link to post
Share on other sites


Ads by Google:

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).

0

Share this post


Link to post
Share on other sites

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???

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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)?

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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!!!

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,385
    • Total Posts
      920,613
  • Topics

  • Posts

    • Squirmingitch, I forgot to mention best of luck to you during the storm! I hope you are safe and that your home isn't impacted too badly! I'm on the coast in SC so we will see some storms from it but nothing near as bad as what you will have. Take care and good luck.
    • SquirmingItch, I really appreciate you gathering info for me! To answer your questions, yes, I'm on Dapsone now and have been on it for about 4.5 weeks. I have been gluten free for the same amount of time. I started on 50 mg of Dapsone which didn't seem to help much. I spoke to my doctor about it and after about a week she raised it to 100 mg. Since then I did notice a huge improvement in both my rash and itch. I no longer have any active rashes and my itching isn't completely gone but it's very minimal. I have been getting weekly blood tests done and will soon be moving to monthly.  My DH skin biopsy was done before the gluten free diet and Dapsone. My results for the skin biopsy came back as inconclusive, but even with those results, my doctor was convinced I had DH. I specifically asked her about the fact that she took the biopsy directly from the lesion rather than next to it and if that affects the result. Her explanation was that if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present. But she said that an inconclusive result isn't surprising because the IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive.  That's when she decided to run the celiac blood panel on me. And even though those results came back positive for the deamidated gliadin and negative for tTg, she still is very convinced that I have DH. I am happy that my doctor seems to be certain, but I would just feel better if the results were more definitive. The one other thing I am waiting on is I have been asked to attend grand rounds at the local academic hospital in 2 weeks. I guess grand rounds is where all of the academic dermatologists and dermatopathologists get together to review certain complicated cases. They will meet with me, review all of my pictures, biopsies and blood tests. My situation has been so complicated so they asked me to come. I am hoping maybe then I will get some more answers. 
    • It sure is, it really is. 
    • shellyb, I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI. Im in FL & have had a long day watching Tropical Storm Hermine & making preparations for it's track which is over where I live. I'm tired! I will have links for you to reputable medical info. on the rash but it make take me till tomorrow or even longer if we lose power.  I'll be back as soon as I can. Question: You're on Dapsone now? How long have you been on it? How is it working for you? Are you getting the proper testing at regular intervals to make sure it isn't doing bad things to you? Were you gluten free before the skin biopsy?
    • Thank you so much for your quick response, GFinDC. While I wouldn't be completely opposed to another skin biopsy, I already had 4 done (3 were done prior to my dermatologist suspecting DH) so I don't love the idea of  yet another hole and scar on my body. Plus, fortunately I don't have any fresh lesions now, which I believe is needed for the biopsy. I wish I would have known to see a GI before going gluten free but I was so desperate to get any relief that I started that and Dapsone as soon as my doctor mentioned it to me.  My rash is definitely symmetrical and I have it in all of the "classic" DH spots although it basically spread over my entire body. As much as I'd like a more formal diagnosis, I really don't think I can go through all of that again. It was so bad that not only was I getting no sleep but I had to change my sheets every morning because there was blood all over them. Sorry, TMI. The worst part is that this all developed during my ninth month of pregnancy and got much worse after I delivered my baby. So not only was I dealing with this insanely itchy rash but I had a newborn and a toddler to take care of.  My daughters' pediatrician did mention doing DNA testing on me first and then my daughters to see if there's any concern that they may be susceptible. I may just go that route for now. I was just curious if others have had similar test results to mine and how did their doctors treat it? Thanks again!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,455
    • Most Online
      1,763

    Newest Member
    JLeigh
    Joined