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EndocrineWeb Community Advice

Chronic Hives

From: sickofhives - 49 weeks 6 days ago

I was dx with Hashimotos Thyroiditis and Autoimmune Urticaria 14 months ago. I have had hives off and on for the past few years and have had 3 biopsies, tried numerous ointments, creams, lotions, steroids and the only thing that helps is high does of antihistamines. Im seeing a Dermatologist , Allergist and Endocrinologist. I tested negative for gluten allergy. I take 50mg levothroxine, 2 Allegra, 1 Claritin, 1 40mg Famotodine DAILY. TSH levels is great right now 1.285 and still dealing with hives. Anyone else have antihistamines running their life? Has anyone dealt with this and it goes away? 50 and frustrated!! :/

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I had this problem from 12/2000 until 2/2002. So many tests and doctors. Different drugs. Nothing helped. They just stopped. Fast forward to November 2019 and they started appearing again. Nothing major. A couple in my lip from time to time, some on my outer thighs. Starting last weekend they came back with a vengeance. Went to my new doctor (I moved from SE Texas to SW Pennsylvania in 2016. Got the obligatory Rx of atarax and prednisone. I have an appointment in two weeks for my regular thyroid check. They know the hives are getting worse. I’m making a list of labs I want him to run. Here’s what I’m currently taking for them: zyrtec, Claritin, 5000iu vitamin D, Pepcid, prednisone (as needed), atarax (as needed). I’m also trying out CBD capsules because I’m desperate. I’ve been down this road before and don’t wanna go down it again... at least not for as long as I did before. The only positive note is that I am retired now so I don’t have to get up and face people all day long. Lol

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I was breaking out in hives and angiodema (where my face swelled to the point that I sent my own father a picture and he didn't recognize me) for 2 years before being diagnosed with Hashimoto's.

After being diagnosed with just Hashimoto's (I'm not hypothyroid), which I basically diagnosed myself with and just made my doctor confirm after she had been completely useless, I did a lot of research about how Hashimoto's and hives are related. I'm sure you've learned that when you try to learn about Hashimoto's online, most articles will automatically jump to talking about hypothyroidism, which is SO frustrating when you only have the autoimmune disease and are experiencing negative symptoms. There really hasn't been much research into pre-hypo Hashimoto's which drives me nuts considering it's the #1 cause of hypothyroidism.

I've always preferred actual medical doctors over holistic approaches, but I wasn't having much luck in finding a medical solution and I saw a lot of hype over the AIP diet helping people with Hashimoto's or other autoimmune diseases who experience chronic hives. The reasoning behind it actually made a lot of sense. It pointed out that the majority of our immune system is in our digestive tract, so if our gut is unhealthy then that is going to aggravate someone who already has a messed up immune system. At that point I was like f*** it nothing else has helped so I might as well try.

It actually worked. It sucks, because I love diary and bread and sugar, but I love not constantly breaking out in hives more. I highly recommend you try it. It's an elimination diet similar to Whole30, but the focus is on cutting out inflammatory foods, and then slowly reintroducing them one at a time to see what triggers your hives and what is safe to eat. Can't hurt to try at this point, right?

As for antihistamines, I have found that Allegra works best with Zyrtec coming in a close second. I'll also use Benadryl, but mainly because it knocks me out and helps me sleep when the hives are really itchy.
**Your body can build up a tolerance to antihistamines!** I didn't know this until my dermatologist told me, and so when I was still breaking out constantly I started rotating which antihistamines I was using every week and it totally helped. Also, it's safe to take up to 800mg of Allegra at once. I would take 2 in the morning and then 2 at night of the 24 hour Allegras/Zyrtec.

I swear though try the AIP diet for 2 weeks and I can almost promise that your hives breakouts will calm down. Once your hives clear up, try to stop taking antihistamines while continuing the diet and see if your outbreaks start again - if they don't, great news, it's probably something you're eating!! This is the point where you start reintroducing foods one at a time to see which trigger a reaction.

If your TSH level is 1.285 you're most likely not hypothyroid, I think you should ask to be taken off Levothroxine. My endocrinologist also wanted to prescribe this to me to help with the hives, but my TSH is similar to yours and taking levothroxine can actually put us at risk of being HYPERthyroid because of the low levels, and there's no point in taking a medication you don't need. I told my doctor I wanted to try AIP first before resorting to medication besides antihistamines, and I'm really happy I did because it really did work.

I hope this helps!! I know how much chronic hives suck!! Boost Thyroid and Thyroid Pharmacist are two websites that I've found really helpful in navigating this mess.
*please note I'm not a doctor, this is just my personal experience!

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