Have you had your thyroid checked?
Hi I’m very new to the group but not new to having chronic hives. ☹️
Anyone else feel they have hives because someone else in the family did? My mom at 28 just had my middle sister and two months later her mom died. Immediately and then for the next 5 years my mom suffered from chronic hives that would randomly appear on and off with different things. I know from my experience that sometimes it was citric acids in the foods she ate, wines, or caffeine that triggered hers…but not always.
Fast forward to when I’m 27, three months away from turning 28 and I start breaking out in hives after eating fish from Captain D’s. We assume it’s a fish allergy but 6 weeks later going strong we were wrong. I had to be on a constant high doses of prednisone and 4 Zyrtec a day plus a class 2 antihistamine in the form of a stomach acid pill and I’m still breaking out so bad that at least once a week I had to get an emergency dose of steroids in an IV. My eyes would swell shut and I always looked like a professional boxer took practice swings at me.
I opened the oven door once forgetting I was to avoid heat and the heat wave hit my face and my throat and my lungs and I could feel the hives take over inside and out and then had to drive to the hospital slowly losing vision because my eyelids were swelling up so much I couldn’t open them.
It hasn’t been 5 years for me like my mother’s was but we are now in year 3. I’m hoping mine disappears like my mother’s did (and she has had 0 hives since her weird outbreak phase) but I have/had it way worse than she did.
I currently am on a asthma shot called Xolair that also helps chronic urticaria sufferers, (please don’t tell me anything bad or side effects of it because I’m NOT kidding it has saved my entire life, social, family, my relationship between me and my spouse!)
I was so depressed and couldn’t live life and was always covered in hives and just three days after that first shot I didn’t have one spot! It is a miracle drug and I sometimes forget how bad I used to have it until it gets close to getting another shot and I start getting hives on my legs again, but they are considered “pin prick” hives and aren’t near as bad as the giant welt like hives that used to engulf my body.
I swear my hives were hormonal because when that time of the month came around I would break out more. Doctors swore it can’t be related to hormones and I want to smack them for saying that when they have no clue what causes it. I had ovary/cysts problems for two years leading up to when my hives started and recently had to have an ovary and Fallopian tube removed due to pain/complications. I want to say they were linked in some way because that surgery happened in November 2018 and since then I have reduced my meds on my own! I get the Xolair monthly and only have to take 2 Zyrtec a day and no more class 2 antihistamines. Before my surgery I had to take 4 Zyrtec a day plus two class two antihistamines (cimetidine) or I’d be itching and horrible if I missed one dose plus sometimes I had to take an anti itch pill! That’s a lot of meds! And now I’m taking less than half of what I was before!
My only trigger now is wine. Reds especially but I can’t take a tiny sip of any variety without turning red in the face and itching all over like bugs are crawling under my skin. I mean I can live without but it sucks that I have to permanently give something up because of this crap.
Sorry this is so long. I’ve always felt so alone and that no one could ever relate (My mom could some but even the intensity of my condition scared her). I know my allergist said there were thousands of people suffering from this but you never see them and you never hear about their stories so you feel like it’s just something they say to make you feel better. This chronic urticaria sucks so bad and I really wish the answer to “is there a cure?” Wasn’t “there is no scientific explanation of what causes it. We can run tests to see if it’s another disease related type of hive, otherwise all we can say is you have it and we don’t know why.”
So glad this group is here and can’t wait to read more about others’ journeys with this condition!
Have you had your thyroid checked?
Noorjaha yep. About every 6 months they check my blood for anything and everything. My allergist even tested for thyroid levels they don’t normally test for. All tests came back negative.
Carrie Swiger ask for your numbers for tsh, t3,t4, free t3 and free t4.then do your own research. My doc kept saying my thyroid was fine for 21 years with hives and I found out it wasn’t. I’m on thyroid a meds a year now and my hives are minimal
Noorjaha she did. My friend has thyroid issues and she had to fight for them to find it. She told me what to have them look for and my allergist did. I have a really good allergist, unfortunately she just doesn’t have many options when tests come back negative.
Noorjaha Patel is there a special doctor I should see for thyroid issues though? Maybe seek a more informative opinion on that organ?
Carrie Swiger no, just ask for your last thyroid blood results and do your own research before approaching another doctor
Serena Staley Price
My doc said that there is a correlation to an underlying issue and hives. He had a patient with hives who was taking all of those meds and Plaquenil but still getting infrequent episodes of hives. Once her tonsils were taken out because of “unrelated” strep infections, her hives turned off.
And from what I’ve read, the age you and your mom developed hives is a prime onset. You might be in the process of them turning off!!
Excited for you. 👍🏼
Serena I had my tonsils removed 6 years after getting mono and my tonsils never stopped being infected. It took 6 years to talk my doctor into seeing an ent specialist and as soon as he saw me he scheduled me to have them removed.
Serena Staley Price my onset was 28 too! Worst face outbreak ever. Triggered by mango then none for years and some on and off TTC and big outbreaks after weaned each of two kids. That is a major hormonal shift so there is a big role even if unexplained by medicine.
Amanda doctors told me that 1 out of 10 chronic urticaria patients are men so it can’t just be hormonal because men don’t produce the same hormone levels…and that’s all and dandy but my chronic urticaria is probably hormonal. The 1% of men that get it might have something else wrong with them, but mine always flared up bad during ovulation and my cycle.
Carrie Swiger there are multiple factors for sure which have different significance across the gen population. Stress, hormone shift and onset of virus. Those are my three big ones.
My Immunologist isnt convinced but my CSU, I’ve found comes from stress (anxiety sits in this bucket), incorrect levels sleep (too little or too much), and hormones. These (bless their cotton socks) also send my reflux and heartburn through the roof.
Liz I’m right on board with you there! Those three things had to trigger mine! My husband had started a new business (a store) with his twin on top of his first business and he wasn’t home 16-18 hours of the day getting the building ready and I was taking care of our kids by myself for almost a year. About 10 months into that year is when this started. His business with his brother failed several months after it opened-when they say don’t do business with family there is a solid reason why- and then for a whole year after that I had no stressors and my life was back to normal but my hives were not. I never sleep well period, and I was in reoccurring pain until this past November from my ovary producing cysts that would rupture at first monthly and then at the end weekly! It was awful!
My Mother had severe asthma. The doctors feel my Uticaria was inherited from her. Just different autoimmune. Im on Xolair and doing great on it.
Debbie Silva my allergist said there could be something related between my mom having asthma as a kid, growing out of it, and then having hives for a short period of her life. It’s just a hypothesis at the moment since there are no tests or way to prove it.
Just wanted to say that Xolair has been a lifesaver for me too!❤️ so glad it has helped you. If anyone bothers you about any potential side effects, they must not understand the torture and all around poor quality of life that this condition comes with.
Also, welcome to the group! I had an allergic/hive reaction to ibuprofen when I was 15 that lasted a couple of months. Fast forward to 33, 10 months postpartum and thyroid went nuts, swelling and breakouts so bad I was in and out of the ER and like you, felt hopeless as I could not leave my house many times. All of the oral meds would zombie me out, meanwhile I had a baby to take care of in the night still. Luckily, I have a supportive husband to help. It took a few months for xolair to really kick in for me, but I’m now 100% clear but afraid to go off of it.
Jenny Campise Oh I am disabled bcs of my CIU. Major gasto issues, cancer like pain with red sore rashes….. Fighting in court to get Xolair coverage.
Charu I had no idea it was so hard to get coverage. I thought I had to wait so long to get on it because it’s a medical thing but come to find out my doctor fought for a year to get me on it. I don’t understand the hassle to get people on this!!
Carrie Swiger I feel so lucky that my doctor was able to get me on it within weeks. He actually gave me a compassion trial shot due to the severity of it.
Who did my phone tag?!
Jenny Campise Which doctor do you hv Carrie? I need to change my dermato as he hangs his head in front of PharmaCare denial. Also are you both in BC or the States?
Carrie Swiger Cd you recommend a good dermatologist? I get 3 min anaphylactic attacks per day at times. So scary….but my dermato is so slow and scared of PharmaCare
Charu I live in the states. I’m in Ohio. My allergist is Dr. Moncrief in Dayton.
I live in the states and have since moved across the country from that doctor since we are military.
Do you have any history of being bitten by a tick or seed ticks/ chiggers? If so, suggest getting tested for alpha gal Allergy. If wine is not vegan it is filter through animal by product. People who have this allergy often experience the type of reaction you describe. Even some seafood served in some restaurants used farmed raised product that are fed mammalian by products and import shrimp are injected with bovine gelatin which contains. The blood test is called Alpha gal Allergy IgE panel. Please keep in mind this allergy is a little more complex than just avoiding mammalian meats, it can include dairy especially in cheeses, butter, yogurts and ice creams. Additional can be found in personal grooming products, soaps toothpastes etc., and medicines.
Tim I haven’t been bitten by a tick that I can ever recall but I’ve heard about the allergy some can cause. I gave up dairy since my husband who was raised on a dairy farm started having issues swallowing food come to find out he has EE (eosinophilic esophagitis) and dairy is his trigger which makes his body think it’s allergic to anything he swallows. So we no longer eat dairy.
I am very big on proteins but I know it isn’t what is causing them. For about 2-3 months I could only eat plain rice and water because the citric acid preservatives in foods were triggering my body to have hive outbreaks and before I knew the list of foods and environmental triggers to avoid I found that if I ate rice and water only I didn’t have really bad days on my face. I couldn’t help getting hot or hormonal changes which always caused flare ups but to be honest before I was on Xolair literally everything had me flaring up and like I said in my huge story up there I was at the hospital weekly for emergency doses of steroids.