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EndocrineWeb Community Advice

Hashimoto's and HIVES!!!

From: summerm01 - 8 years 25 weeks ago

Help! I am a 35 year old female who in high school had hives and was told that I had food and medicine allergies with no allergy testing involved!! Now, beginning last November 2012 I started getting hives in areas around my bra and underwear line, which I attributed to an allergy to elastic. I changed my underwear to a looser size and spent hundreds of dollars doing so, only to fail in my pursuit that it was pressure urticaria only. Well, was I ever wrong! In 2013 late January, I went to my dermatologist because I kept getting this itchy, red rash on my knees. I thought it was eczema, and it was. He did a bloodtest to check TSH and it came back in the 16's. I then saw an Endo and found out I had nodules that needed to be Biopsied. That test came back benign:) I was diagnosed with Hashimoto's Hypothyroidism, and am being treated by an Immunologist with Levothyroxine 100 mcg which began 3/7/13. I still have these terrible hives all over that seem to get worse at night and early morning!! I also have Adema in my facial area (eyes, nose, lips swell). Sulfa drugs increase the hives and swelling too. I just recently started taking REAL brand name Synthroid 100 mcg on 4/23/13. Other symptoms include: panic attacks, hairloss, fatigue, loss of intimacy, and depression. Any thoughts out there? If so, I welcome them with open arms!!! I am miserable:(

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So sorry, k. Do you have any arthritis-type pain? Fever at all?

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So sorry, k. Do you have any arthritis-type pain? Fever at all?

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I have OA also. But diffuse swelling in hands and feet in the morning not related to OA. Unfortunately I rarely get a fever, which has caused big problems. I ended up in the hospital for a month with a Staph infection. Treatment was delayed by almost a week as I did not have a fever.
I saw someone was suggesting gluten free. I'd suggest before trying that to get the blood test first as it will be negative if you have been off gluten. If the test is negative, try gluten free as perhaps are you are gluten sensitive? I'm fine with gluten.

Has anyone having pain had their neural tension checked by a qualified PT?

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My thought was Still’s disease, but that would be RA and I think maybe your rash is worse than a Still’s rash. But it wouldn’t hurt to remember as it’s uncommon and a dr may not think of it.

You should talk to someone about autoimmune disease (probably why someone suggested gluten free). You could also ask a nutritionist about food sensitivity testing as that could certainly cause a rash. Just be sure you see someone reputable for that.

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THIS POST THOUGH! Oh my gown I have had terrible hives and itchy skin for almost a year. It was SOOOOO random when it happened and I attributed it to cold water. I haven’t had the chance to read through all of the comments but I am going to do so ASAP!

My hives (aka ECZEMA - ps, I have just had an allergy test and I am NOT allergic....aka just “hives out of no where” - it happens) are on my upper arms and thighs. I’ve been taking Allegra for the itch but I have been thinking that it is only masking a deeper issue. I have been saying for months that I need to see an endocrinologist but no one will allow an appointment without referral.....so off to the primary care I go AGAIN hoping to get some sort of golden ticket to see the Endo....

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I have been looking into a more natural approach to this and have had multiple poeple tell me about the body scan that is done by a functional doc. Is this what you are referencing? I would love to know what you have discovered since posting this!

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I went back to the allergist. He said the most common associated illness with hives is hypothyroidism. The allergy mes dodn’t Help, but I can get a shot that has to be approved by Genentech, but even with insurance it would cost $800 a month. On a side note, nature throid made me very ill. I became heat sensitive and I looked like I had MS.

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I have Celiac, it took 7 years of testing, and when 1 Dr finally agreed to do the genetic test, he discovered I DO carry the Celiac gene-hence I have Celiac disease. My other symptoms never went away after going gluten free-but I felt much better. Hypothyroid, but on 150mg bc I dont absorb meds easily due to Celiac. Was on Levothyroxine, started getting burning scalp after 1.5 years on meds. Figured I was allergic to the blue dye in the pill, switched to 3 tablets of 50mg, bc they are white. 5 weeks later I have hives on my Thyroid/neck ONLY! Very weird, I think I am allergic to the "fillers" in the meds, which Levothyroxine has a ton of fillers. Hoping today to switch to Tirosint which has literally water, glycerin and synthroid in the pill-nothing else!! I bet I now have Hashimotos-but hoping it is just an allergy to the fillers. Just thought I would add this info bc no one discussed being allergic to the medication or fillers!!!! Or dyes- search Youtube-Jenifer Jenkins hair fell out due to the dye after being on the blue pill for 7 years.

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This sounds like ME! I have been broke out for months. I take singular daily. I started vit D. I am so broke out I have to take the steroids once a month just to have a break. I have noticed a few things. Tight clothes make me break out. Hives are worst at night. Hives in my hair my anxiety is high. I must have a cold room to sleep in. I don’t know how to make it stop. My last blood test my TSH was low so she cut my meds. My hair is falling out my neck is sore and I am exhausted. My diet I have gone low carb and quit drinking. I woke up one day and it has not stopped. My BFF is Benadryl. I am glad I found y’all. But I wish it would just go away. I welcome any advice.

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I am so glad I found this site! Six weeks ago today, I started with hives. They weren't all over just a few sprinkled on the trunk of my body. Fast forward to today, I have seen the doctor 3 times, I have been referred to an allergist and rheumatology. I have hives covering my body and my newest accessory is a cold pack to keep my skin cool. They believe the culprit is my TSH levels which came back a whopping 29!! I am way off the charts, which would explain the fatigue and depression. I have a dx Hoshimotos and had a thyroidectomy. They gave me prednisone which helped the first day (completely wiped my hives out) but then came back with a vengeance when they tapered the medication. They are hoping the increase in my synthroid medication will help make the hives disappear. I, on the other hand, am not that optimistic. I am currently taking 30mg Zyrtec, 300mg Zantac and 20 mg Singular. None of which have helped the hives or the itching. At one point, I thought I was allergic to peanuts because an hour later after eating that my face swelled up....I was at the hair dresser and NOT about to leave! So, I'm here on this site, very happy I'm not alone in this struggle or crusade, but wish we didn't have to go through this :)

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Hi @firewife404
Others on this site know much more than I do, but maybe you should consider getting allergy testing from a reputable allergist, if you noticed the extreme reaction after peanuts. I have hashimoto's and it seems that my general sensitivity to things has increased. Have you had antibody tests since the thyroidectomy? I believe you can still have antibody activity even after your thyroid is gone. People often develop multiple autoimmune diseases.

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I just had an ANA with Reflex that was high. So now, I'm going to a rheumatologist. I also had an IeG done that did not show any allergies. When i saw the allergist, they couldn't do the prick test because I was covered in hives.

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You need to take both a Level 1 antihistamine (Zyrtec) and a Level 2 antihistamine (Zantac)...on a daily basis.
This will stop the hives. But if you miss more than around 2 days, the hives will return.

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I am glad I found this. I had hives for 11 weeks. I had been on 2 rounds of steroids, been to an dermatologist, had a biopsy done, and lab work done. Everyone kept saying it was an allergic reaction. I went to an allergist. She put me on 2 Allegra, 2 Pepcid, 1 Xyzal and 1 Singulair a day and more labs were done. All of my labs have come back. 2 of my thyroid antibodies are high even though my TSH and T4 is normal. I follow up with the allergist this week. I have done research and it shows Hashimoto's. I have been told the treatment of it is Levothyroxine or removal of thyroid. I am already on Levothyroxine. I do feel like something is always stuck in my throat or I am swallowing around something. Sometimes I have to swallow hard. At what point do is the thyroid removal considered? I need all the help I can get with this. Thanks

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Thank goodness for this forum! I thought I was going crazy because that’s what many doctors have made me feel. I’m a 34 year old woman that was diagnosed with hachimotos about 3 years ago. I feel like I mainly break out in give after taking any medications now. I feel like I’m allergic to everything now!

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Everyone please read thishttps://thyroidpharmacist.com/articles/the-common-root-cause-of-hashimotos-hives-and-ibs/ feel better x

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Read this and get tested it will save you I'm surehttps://thyroidpharmacist.com/articles/the-common-root-cause-of-hashimotos-hives-and-ibs/

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I swear I’m showing this post to my doctor! He made it sound like I was a some druggy & why I have hives!

I got referred to an endocrinologist. Get your rT3 (reverse T3) tested. If your body is storing too much of that and not converting it to the active T3..then your body will fight your thyroid antibodies and you won’t have enough of them to fight back. Hence the hives.

Also, your ATP N+K+ pump doesn’t work properly when your free T4/T3 & rT3 aren’t doing what they’re doing, even tho your TSH is in range.. (ATP pump sits outside each cell wall. It pumps potassium into cell as it pushes sodium outside the cell. Especially at night, your sodium I guess gets lost or isn’t pushed out of the cell and your potassium also gets lost & not enough gets into the cell. So, your body then reacts with hives by forcing them out with sweat during the night. Something like that. Look up ATP Pump & Thyroid. )

Yes I still have them.. but at least I know why! I JUST started taking Selenium. It helps T4 to T3 conversation. I’ll let you know how it works and I’ll post.

I’ll keep checking to see if anyone posts any updates. Oh and look up “Mast Cell Activation Syndrome”. It happens to the best of us with this disease.

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I have dealt with this for 2 years and guess what I found out? It isn't the thyroid disorder!!! The hives and rash are due to an allergic reaction to the medicine. I stopped the meds and have been hive and rash free for months. We are trying out different meds now to see what I can take.
Try this with your doctors help. I'm frustrated but I'm not covered in itchy hives and swollen face. Good luck!

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Hi Summerm01, I'm sorry to hear about your hives. I had this a few years back (doctors found nothing, suggested it was an allergic reaction and like yourself, no testing involved. But summer 2016 was horrible for me. Started with an itch on my back and flared up especially morning and night...I'd wake up and it would hit me like an electrical jolt! I pushed my way around my managed care, got some testing done. But alas, absolutely nothing. Finally went to dermatology and they thought it was a fungal infection, gave me some cream that I applied after showering. It went away over about a months time...slowly, after each application of cream I felt slight relief. It was "an itch with no rash" as the doctor said, but she said it may be thyroid (again, just her experience and a suggestion), but further testing didn't reveal anything except that I do have the thyroid antibodies. I had a rash around both ankles but they said it was most likely because I itched there more than other places. And my whole body (earlobes, eyelids...everywhere) itched! I was told not to scratch (nearly impossible) and I took Benadryl which helped very slightly. I too have some hairless now and don't know when it will stop...I'm a 56 year old woman but don't want to lose all my hair. My itch started around the back where my bra is and along the front underwear line. I'm not allergic to elastic or anything that I know of. I am very sensitive to fragrances and alcohol so I don't wear perfume or clean with anything with a fragrance. I feel a reaction when cleaning my house with even vinegar, but I don't go near alcohol or even bleach. I live in fear that the itch will return. I hope that yours goes away. This is probably no help but I'm happy to be in this discussion to learn and to share anything "real" that comes my way. I'm hoping further testing identifies or a least truly ties my situation to my thyroid antibodies. Take care of you!

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I feel for you, but want to thank you for sharing your experience. I'm facing testing and treatment and many I've spoken with told me about the hives and swollen face after taking some medicines. It's things like this that make me want to not seek treatment as it's the fear of something worse than I currently have. I had the itch two years ago but wasn't on medication and they couldn't really tie it to anything, finally said it could be fungal. I'm glad it's over but it has occurred other times in the past 10 years or so, and without knowing what it's from, I fear it will return. Good luck to you!

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**Solution that I found -I had hives at night for few months. It was very bad where my entire body would be covered. Also, after taking synthroid I would get huge hives. Also food allergy was bad. Anyways basically same thing everyone is saying on this board.

Doctor told me that humans immune system changes about every 10 yrs but currently medicine does not have a complete explanation. With help of this board and reading about how to improve immune system I began to look into gut health where majority of our immune system reside. I’ve been following the leaky gut diet for a month now and 99% of my issues are gone. I no longer drink alcohol, no sugar, no gluten, minimal starchy vegetables. I began eating healthy fats (Alvacados, coconut oil, etc), collagen peptides supplement, bone soup (mostly beef in instant pot), veggies, meat, etc.. if you do some research on leaky gut diet you will find it.

I hope this will help some on this board that are having the same issues. With autoimmune disease I now know that gut health = strong immune system. I am so thankful for people that actually posted solutions on this board. I also take vitamin D since someone suggested it and it seems to help as well.

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Like many of you here, I suffered with hives and no one could help. I had Hashimotos for over a decade and managed it well with compounded T3/T4... until I got pregnant. I then developed what I thought was an allergy to elastic, then horrible hives. I was already gluten, daily, egg and sugar free... but the inflammation persisted. I then got angiodema - swelling on eyes and lips, and more and more food sensitivities. I went to all sorts of doctors that had no idea what was going on or what to do to help. The specialist in Chronic Urticaria just wanted to put me on steroids, Synthroid, Zyrtec, Zantec, etc. While trying to figure it out, I had two miscarriages. I finally found a doctor (ND) that figured out it was related to my thyroid and somehow to my iodine levels. She put me on an Iodine and Tyrosine supplement (500mcg three times a day at first, then down to 500mcg twice a day which I have continued for 5 years now). My hives disappeared! I got pregnant and had a healthy pregnancy! No hives! If I do run out I now will get 1-2 pinpoint spots that itch like a hive, but all is better once I get the iodine supplement. (I do also work to heal my gut, eat a thoughtful diet, take various supplements, which all help.)
I know everyone's case is different, but don't give up! Push your doctors. Find someone that is curious and wants to find the root cause and wants to help you. Say no to those doctors that just want to put you on meds. Find a naturopath that knows about auto-immune disease and treats each patient like an individual. This problems is horrible and debilitating - and it is awful that it is so hard to find knowledge and knowledgable doctors to help with it.

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No idea if this is related or not but it has me wondering. I was hospitalized for 2 weeks for severe urticaria or unknown origin in 2011. It was worst case anyone has seen. They did epi-pen, prednisone, 3600mg of Gabapentin, I had to be submerged in a bathtub for 12+ hours a day as only relief was being completely submerged in water. Fast forward after 4 months it stopped and then in 2016 it came back again I was literally scratching my entire first layer of skin off. Anyway they still to this day have no idea what was the cause of the 2011 and 2016 severe hives and itching that required hospitalization. I was put on 80mg of Blexten daily (which is off label higher that normally Rx dose) and I apparently have to take it forever despite nobody knowing the really reason of these extreme severe spikes in itching and hives. Fast forward I am now being investigated in 2019 for thyroid issues (cancer, or something else) have 3 cm left suspicious nodule. Anyway this post now got me thinking if the severe and I mean severe itching and hives that required 2 weeks of hospitalization for itching if it was caused by my thyroid. I still get it from time to time even with the Blexten but it is only at night and wakes me up from my sleep if I forget to take my pills. Not only doctor or specialist and I saw 26 different specialists (dermatologist, immunology, neurology) not only said it was a result of my thyroid as my T3 and T4 were normal despite by TSH being off the charts abnormally low.

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All,
Just want to share few pointers from my experience so far...
I posted a question I guess in 2015 as to how to get rid of chronic urticaria. I have Hashimoto’s thyd, when hives broke on my skin they were very intense. Either I need to take cold water bath or apply ice pack.
Anyways after suffering for 3years, now my hives are 99% gone.
What changed-
Took thyroid medicine per doc prescription.Monitored thyroid levels.
Reduced alcohol intake(For Adults)
Increased workout
Took homeopathic medicine for few months.( this medicine effect will start slow but will have great long term effect)

I never used to step out without Zyrtec handy but now I don’t have to carry it at all....
Hopeful that this helps...

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I have read most of the posts on this topic. Starting a out 10 years ago I started having itching that seemed to come out of nowhere and didn't seem to have a real pattern o er the years. Primarily my itching was from my elbows to my hands on both sides usually. My arms will look perfectly normal when they start itching. I tried a lot of the same things everyone has listed but nothing made it go away for an extended period of time. As you know hashimoto is an autoimmune disorder which when you have it you may have other autoimmune disorders. I have 2 types of lupus and sjogrens. Over the last year, I've been getting Benlysta infusions which suppress the immune system because it I attacking your body instead of helping it. Since being on Benlysta, my itching has improved greatly. I can go months without itching. Once in a while I do have it but not at the intensity I used to. I don't take any antihistamines any more on a daily basis. I occasionally take benedryl after the itching starts but ice packs are the best as they numb the area and you are not as likely to scratch. My point is that you might want to be checked for other autoimmune disorders. One thing I learned when diagnosed with lupus was that the 4 miscarriages I had earlier in life were a sign of lupus. Exposure to the sun can often antagonize the skin so I try to avoid being in the sun or try to do things like gardening in the evening and I also where long sleeves if I'm going to be out in the sun as well as sunscreen.

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I had these symptoms 15 years. RELIEF AT LAST! It’s been 4 years. Full nights sleep and NO HIVES! I saw a doctor who put me on an elimination diet. My migraines were reduced and most itching stopped. But I did not get total relief until... blood testing. Get a BLOOD food sensitivity test. No doctor would give me one. I had to see a naturopath. I told them I only wanted the test. It came back full of things. IM FREE FINALY! No hives, no migraines. Turns out high fructose was causing my constant migraines. Garlic, chocolate,tomato and 20 other foods my worst hives.
The elimination diet included foods I was reacting to so the blood test was way way better.
Bc Hashimoto’s is immune system and the immune system is in the gut. You are prone to leaky gut and food allergies.
I dealt with my leaky gut at the same time. Food sensitivities will wreck your gut! I tried everything to heal my gut but nothing worked until I stayed away from my sensitivities. The thing that worked was BULK BOVINE COLOSTRUM. A tablespoon 3X a day in any kind of milk for 3 weeks.
I use it now periodically if I’ve had things I’m sensitive to. Babies are born with immature stomachs. What completes them? Yep. Colostrum. It’s what you need.
MY LIFE IS BACK! I was suicidal bc I was getting no sleep and migraines with hives for years. I hope and pray this info helps someone.

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Also before you do a food sensitivity test: for the week before the blood draw eat a wide variety of food. Yes you WILL break out. But you want the antibodies to turn up in your blood test so you know what you are reacting to. I ate everything known to man. I ate 9 grain bread to test each grain. All types of fish and dishes lol. I had to take Benadryl every night but at least my test covered a lot. And you only a bite or to of things not entire meals to show up.
After seeing and feeling the results of staying away from my reactive foods. I am a true believer. They also tested for medicines, herbs and molds. Turmeric and something else I was using for inflammation was actually causing problems too.
Since these things run in families I tested my entire family. My son who’s always eaten everything and told me I was wasting my money on a test for him, had issues. After staying away from soy, among many others on his results, his life long depression has gotten way way better. He is more pleasant, has more hope, and we enjoy him more. Your mood can be affected by the chemical reactions in the gut.
My daughter and son would get pimples on the upper backs. We always said it was just genetic. Yes, but it was food related. Once they stayed away from their no-no foods the back bumps were gone.
My morning hack-up of phlegm is over unless I’m sick.
Does this make cooking difficult? You bet. We loved garlic and tomatoes. And each person has a different requirement. But our health is worth it :)

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I’m so glad I found this thread. I am a 22 F that started getting random hives in 8th grade. My mom never took me to the doctor and blamed it on stress from boy drama LOL. Anyways, I started taking a Zyrtec a day and they never really came back. Occasionally I would have a breakout if I forgot to take my Zyrtec. Fast forward to this year, my hair started falling out. I made and appt with my primary and got bloodwork. My TSH came back at 5.4. She decided to do a full panel and two days later my TSH had already gone up to 7.8!!!! The day in between my two bloodworks I broke out in hives. BADLY. They have not stopped since. My dr put me on 50 mcg Synthroid which I started about a month ago. No Improvment in hives. I go to sleep at night (taking 3 Zyrtec) and still wake up covered from head to toe. The weird part is that the minute I take my sythroid in the morning they start to immediately disappear. I’ve started 4000 IUs of vitamin D3 but that hasn’t seen to help yet. I am desperate because I’m a senior in college and can’t even attend my morning classes due to waking up with severe hives every single morning

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Go back to your doctor ASAP and tell them to do a full thyroid panel AND most importantly test your TPO and thyroglobulin antibody levels! The same thing happened to me when I was about a sophomore in college (20 years old) and it was only last month, almost 4 years after my first hives breakout, that I was diagnosed with Hashimoto’s disease, which is an autoimmune disease that attacks your thyroid. I was told literally the same thing: antihistamines, zantac, and vitamin D, and it got to the point where the hives would make my face swell up so badly that I looked like the fat dude from mulan.
My GP sent me to an allergist whose only advice was to take a lot of antihistamines, which worked for a while, until it didnt, and also didn’t actually address WHY I was getting the hives. December 2019 I had hives for almost the whole month, I did a lot of googling for hives plus my other issues (depression, anxiety, brain fog, to name a few) and tried to ask my GP if it could be a thyroid issue, and she totally dismissed me. I told her that I’ve been struggling with this for 4 years and she’s done nothing to help me and insisted she order the test and refer me to a dermatologist since hives happen on your skin. He, being a good doctor, actually listened to me and ordered the CBC/thyroid/ANA panel that caught what my GP’s simple TSH test wouldn’t have: that while my thyroid results were normal, I have very elevated anti TPO antibodies and thyroglobulin antibodies. He referred me to an endocrinologist who I’m seeing next week, but I’ve done a lot of research in the meantime and have been doing the AIP diet (no gluten, no dairy, no processed sugar, and a few other restrictions) and within days I wasn’t breaking out in hives anymore, didn’t even need to take my antihistamines. Flash forward to a moment of weakness this weekend when I had pasta when red sauce and cheese..hives several hours later.
Hashimoto’s has affected me so much that while I’m still slowly chipping away at classes, I’m currently in my 6th year of undergrad at 24 years old. Don’t settle for lazy, band aid solutions from doctors, like antihistamines, that don’t actually give you an answer as to WHY you’re getting hives in the first place. I’m not saying don’t stop taking the antihistamines and vitamin D, because vitamin D deficiency is common and antihistamines do help with the hives, but don’t be afraid to advocate for yourself and keep leaning on your doctors and doing your own research until they can tell you what’s causing the hives to begin with.
One last little nugget of advice: your body can actually develop a resistance to antihistamines. I was taking Allegra 3 of the 180mg ones) which was working great, and suddenly it wasn’t. My dermatologist suggested I try Zyrtec or Claritin while I was waiting for my blood results to come in, because they are different drugs from each other and from Allegra, and it worked!! It took a couple more weeks for the hives to stop coming back, but I started rotating the antihistamines I was using every couple of days which seemed to help keep them from getting to face-swelling levels. When the breakout is really bad I also take Benadryl before bed because it knocks me out, but also because it helps with the itching.

I hope this helps!!!

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