I thought I’d share my story. In 2014, I was in 8th grade, and suddenly every day, I started getting hives all over my body. It continued around the same day everyday for about a month or so. I was so embarrassed, it would start in the middle of my last class of the day and one day I came home and my lips, eyes, face, and fingers started swelling. I went in to the ER, and immediately they rushed me in to a room (my throat had started closing up) and injected 2-3 epipens. And put an IV in, along with all sorts of antihistamines. They prescribed hydroxyzine and my doctor referred me to allergy, where they couldn’t find me allergic to anything. Then the allergist referred me to endocrinology. The endocrinologist didn’t take it seriously, and just diagnosed me with hypothyroidism but didn’t continue to look in to it. It had gone away for awhile until November of 2018.
Hives popped up, and I went in to the ER, and was given antihistamines. Then it didn’t come back until August 31st this year, and has been continuing since then. I went in to my primary doctor (which isn’t the same one as in 2014), and she just shut me down, I asked to see an endocrinologist again because I thought it was hashimotos, and she said, “no it’s not that, your thyroid has nothing to do with these hives.” So she referred me to allergy, and her immediate response to this was, “did you ever think it was hashimotos?” So she did some testing. All that came back to me was my testing in metabolic panel, CBC and differential, and my sedimentation rate. (Which was high). She also said she would test for antibodies found in autoimmune diseases and environmental allergies. I called once to check in on results and was told they haven’t come in yet (the ANA/antibodies, and environmental) so I called back AFTER 3 weeks of waiting when I was told it would be two weeks and then I’d get a call. But never got a call. The receptionist told me that all I need to do is go in to see my primary and go over results I have, but I’m supposed to be seeing more results than that. So I’m absolutely frustrated.
This is the most miserable thing I’ve ever experienced. It’s been 7 weeks today. My hives get so aggressive and itchy. I came to a realization that ibuprofen makes it worse- I went to bed with my lips swelling one night, and swollen like balloons the next morning until afternoon. Which was after taking ibuprofen. I’ve experienced it without taking ibuprofen too, but who knows. I have no answers, along with some of you guys too. And I can’t make an assumptions. I’ve realized that ranitidine has helped the most but I can only take it twice a day. Ranitidine is a H2 blocker, and it’s helped more than cetirizine and Benadryl. I’ve also been taking Vitamin D & iron (because in testing we saw I’m low on iron) which, I’m not exactly sure if it’s helped? I also started using hemp lotion which helps a ton with itching but I’ve gone through it all. The hives just seem the same lately. They pick and choose when they want to be bad. I also take some hydroxyzine because I found it in an old purse of mine the other day. It’s basically just made me sleepy, I usually only take it before I fall asleep. I wake up with them everywhere, on my face, as well.
My hands have been swollen like crazy. We need answers! This absolutely sucks! What’re your guys’ stories and what helps you?
Kota Street The allergist also gave me montelukast and it helps every once in awhile
Nelly Hall Your story sounds a lot like mine. The only thing that has helped has been the Xolair injections. I have hashimoto’s though and although my allergist feels it’s not related to the swelling and hives, I think it might be. Ibuprofen would also make it worse for me before the injections. I’m doing much better though. I’ll post a pic of what my flare ups look like.
Kota Street Nelly Hall that’s great!! My allergist told me to wait after 6 weeks to get Xolair because then more likely that insurance will cover it. I’m most likely sure mine is hashimotos or lupus.
JenJen Otero I have the Same story as yours! “Hypothyroidism” autoimmune hives, 🤦🏻♀️ nobody helps, my tsh was in 34.712 and now in 9. Something so almost back to the range! But this hives it driving me insane! Now not even prednisone is working for me, I been so long using them ,that I think my body got used to them
Kota Street JenJen Otero yeah! My thyroid is at normal levels because I’m on medication, I’m on levothyroxine. And my doctor told me through message on MyChart that there’s no way it’s hashimotos because my thyroid levels are normal. My levels are normal because I’m on meds! Prednisone helped me for a little but I was also only given a 5 day supply after ER visit. I feel the same!! I think my body is just getting used to all the meds I’m putting in my body. And omg, with how much medication I’m taking, I always feel so tired.
JenJen Otero Kota Street I’m on the same medication as you 112mg per day. I’m so confused, I had never suffer from anything in my life. For the past year and months I Been going thru all this. I can deal w the thyroid issues but the hives is something else, this is another level of suffering! To get xolair I have to be out of steroids and medication like wtf… how I’m going to do it for 2 months? I he r hives all over my body and face! Impossible… I’m always sleepy and tired! I feel your pain
Kota Street JenJen Otero yeah the thyroid problems are fine but the hives are just crazy! They’re miserable. You have to give up meds 2 months before Xolair? Ugh I’m so sorry girl! It’s so not fun!
Ghrail Mc Tan dont be stressed,don’t mind it.bcoz stress is one who trigger the itchiness,just be happy and always pray to God..
i also xperience that, dr.said that theres no cure for allergy but theres a remedy,i just take antihistamine ceterizne for 6months , last sept its gone .thanks to God.
Kota Street Ghrail Mc Tan yeah I’m trying to stay calm and not stress out over it, because when I do it just makes it worse . That’s good. My body is just getting used to the drugs
Linda Guzman Vigesaa Advil, cold medicines cause lip swelling for me. If I take it I only take 1 and not for multiple days. I had the bad lip swelling often at first – got better with time. Hope you find something that works for you – seems a little different for all of us
Kota Street Linda Guzman Vigesaa yeah I hadn’t taken ibuprofen in awhile until one day last week , and it just started swelling like crazy. Thank you!
Elizabeth Mullins Good luck!
Auto Immune Group and Healthy Living I get Chronic hives, maybe due to my Hashimoto. I did get similar type of swelling all over my face many years ago and found out I was allergic to NSAIDS , like aspirin,Ibprofin , etc.. most pain type meds. I can only take Tylenol .
Perhaps you have similar allergies? Good luck . I wish you the best.