Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Just Got My Hashimoto's Diagnosis


HopefulMama23

Recommended Posts

HopefulMama23 Explorer

After a LONG ten months since my last baby was born of cycling between hyper and hypo thyroid symptoms, I was diagnosed this morning with Hashimoto's.

My symptoms are:

(hyper): hair loss (scalp and body), weight loss, loss of appetite, insomnia, anxiety, heart palpitations, diaarhea

(hypo): weight gain, swelling, fatigue, depression

I seem to do worse when I'm in a hyper state- I just went through one that lasted about 2 months and it took a huge emotional toll.

I went gluten-free six months ago hoping that would help with some of the digestive issues I was having, and it did. I also have celiacs in my family, although my (celiacs) antibody test was negative.

Does anyone have any experience in dealing with Hashimotos? Any advice? My bloodwork is all still within normal range, although my thyroid is enlarged to three times normal size, so my endo is just going to monitor me for now. Are there any dietary changes or nutritional supplements or lifestyle changes I can make to help control this? The idea of continuing to cycle between hyper and hypo for the rest of my life is so freaking scary to me.

ANY advice or personal stories are greatly appreciated.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



burdee Enthusiast

After a LONG ten months since my last baby was born of cycling between hyper and hypo thyroid symptoms, I was diagnosed this morning with Hashimoto's.

I went gluten-free six months ago hoping that would help with some of the digestive issues I was having, and it did. I also have celiacs in my family, although my (celiacs) antibody test was negative.

Does anyone have any experience in dealing with Hashimotos? Any advice? My bloodwork is all still within normal range, although my thyroid is enlarged to three times normal size, so my endo is just going to monitor me for now. Are there any dietary changes or nutritional supplements or lifestyle changes I can make to help control this? The idea of continuing to cycle between hyper and hypo for the rest of my life is so freaking scary to me.

ANY advice or personal stories are greatly appreciated.

Yes, I was diagnosed with Hashimoto's 10 months ago after years of hypothyroid symptoms. I had been gluten free since my celiac disease diagnosis in 1994. However, I still had symptoms of low energy, low body temp and chronic constipation despite following all the usual regularity rules (magnesium, fiber, fluids, probiotics), abstaining from my other allergens and treating 8 different intestinal infections over a 4 year period. My doc suspected hypothyroidism, because I had low immunity (continual respiratory infections even after I stopped having gut infections). My TSH wasn't terribly high, but it was over the normal (0.3 to 3.0) range (revised in 2003 by American Endocrinologists). However my T3 level was very low, because I don't easily convert T4 to T3. Also my Hashimoto's antibody levels were within normal range, probably because I had abstained from gluten (which prevents more thyroid damage) for 6 years before my TPOab (thyroid peroxidase antibody) test.

Your TSH, T4 and T3 can be normal, but you can still have higher than normal TPOab results. Did your doc give you any thyroid antibody tests? Those confirm Hashimoto's even when other thyroid tests are normal.

Salax Contributor

I have Hashimoto's as well. I had a goiter, thyroid was enlarged as well. Levels were not normal. I am on a life time treatment of synthroid (spelling?). Which personally I think I need an alternative choice in thyroid meds, something natural. Any ways....

It sucks, but it's not that bad. I still have alot of the same symptoms I had before the diagnosis, but the goiter did receed. So that was a plus. But with Hashi's and Celiac, my body has still not fully recovered I think. I am still tired all the time, the stomach issues are gone and the neuro stuff is also gone since going gluten free. But I do get cold/hot easier than most (which is linked to thyroid), I still get colds/flus easier. Which is something I talked to a immunologist about, he told me that people with auto-immune diseases do get sicker more frequent than people with out auto-immune diseases. And Hashi's is an auto-immune disease. It means that the body is making anti-bodies to fight and attack the thyroid. My understanding is that even with meds it will over time still kill the thyroid at some point, but we can live without one with replacement thyroid meds (like synthroid).

It's going to be ok, it's just something that you need to accept and deal with. It's a pain in the arse, but it could be worse. Don't let it get you down. The name of the disease is freaky, the disease is weird in itself..but you are going to be ok. This is not a serious thing. B)

burdee Enthusiast

I have Hashimoto's as well. I had a goiter, thyroid was enlarged as well. Levels were not normal. I am on a life time treatment of synthroid (spelling?). Which personally I think I need an alternative choice in thyroid meds, something natural.

And Hashi's is an auto-immune disease. It means that the body is making anti-bodies to fight and attack the thyroid. My understanding is that even with meds it will over time still kill the thyroid at some point, but we can live without one with replacement thyroid meds (like synthroid).

When my doc suggested thyroid (T4) supplements, I chose Levoxyl over Synthroid, because Synthroid contains a lactose ingredient. I have casein (dairy) allergy and react to lactose, as do many other celiacs.

Docs (and thyroid 'experts') who don't understand the connection between gluten intolerance and Hashimoto's often tell their patients that they will need more and more thyroid supplement as the Hashi antibodies continue to attack their thyroid. However, most people find that abstaining from gluten (which can cause those autoimmune antibodies) stops the thyroid damage. My TPOab (thyroid peroxidase antibody) test showed that my antibodies have actually DECREASED during the past year, rather than increase. I'm controlling my hypothyroid symptoms with a small amount of T4 and T3 thyroid supplements.

cahill Collaborator

In addition to being gluten free,going soy free may be helpful.

Has your doc checked your vitamin levels (especially D and B12)??

Did your doc check you for Graves disease???

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,947
    • Most Online (within 30 mins)
      7,748

    Sinch23
    Newest Member
    Sinch23
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jacki Espo
      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
    • DebJ14
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.