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Hives or whelps!! Please help!!

So about 10 years ago I was 21 and out of no where broke out in hives and whelps all over my body. After lots of antihistamines, lots and lots of steroids and lots of doctors, ER visits and dermatologists there was no answer. I dont know how long I suffered with the hives but it was at least a few months. My lips would swell my nose would swell my eyes would swell. It was miserable. And then just like that one day I never broke out again til April 1st 2018. I tried not to get upset but anyone who has experienced this knows how miserable and horrible this is. So I went to the doctor and it was back on the steroids, zantac twice a day and benedryl, which do help but they do not prevent them. I cannot live on steroids. I have hypothyroidism and have only been on my medication for it for a little over a year. Levothyroxine 25 mcg. I felt better from all the thyroid symptoms until January of this year I started crashing again and being super emotional…I had a checkup and got blood worm on 3/23. My thyroid came back that is was "IN RANGE" which I hate that term by the way…but luckily my doctor has listened to me so far and prescribed on  how I feel so she upped my dosage to 50mcg. Since I had to take steroids I cant start my 50 mcg until I can come off the steroids…I cant come off the steroids because I will break out. I really deep down in my heart feel like I am having the hives and whelps bc of my thyroid, but I dont have a lot of evidence to back it up and can only find small amounts of other people's same situations. I just wish I could find something out…anything….if anyone knows anything please please please tell me!!!!!!!

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  • K8sMom2002

    Oh, my goodness, what an extremely frustrating experience you're having! I can't speak to whether the thyroid may be part of your problem, but I CAN tell you that hormones are powerful stuff and your thyroid can affect you in many different ways.

    Could you talk to your doctor about trying a slow taper down on the steroids?

    IIRC @Shea and @GigiGibson have both talked about having to go on a super slow taper … much slower than usual. That may give your body a chance to adjust. 

    What other things have you tried to control the hives? Has a symptom diary helped you figure out any patterns? 

    This time of year is really, really high for environmental allergens. Do you have any environmental allergies?

  • Justdontunderstand

    Thank you for your reply! This round of steroids I have tried to just take 2 -10 mg a day and then weekends not take any…but I would have to take them again come Monday.

    I did go to the allergy doctor years ago and they couldn't find anything I was allergic to. I have taken a 10 mg claritin or zyrtec for about 3 years now switching from time to time just to keep them working better.

    I was curious when I went to my doctor this time about my hormones. I am 30 yrs old, 5'7 and I weigh 214. I have lost 80 lbs over the past 5 years and kept it off but it seems like through diet and exercise I cant get any lower than this other than not eating  lol I have also been diagnosed with PCOS and have been on metformin for about 2 years for that which it really does help with the cysts and horrible periods.

    I asked my doctor about estrogen deficiency and progesterone dominance. She took blood work and said that they were "in range" so she didn't think that there was anything further to do.

    My sister suffers with HYPERthyrodism and she said to also keep a journal. I think that is a great idea! I am definitely going to do that.

    When I broke out like this years ago it eventually led to me having a continuous cough that would last for about 30 minutes usually early in the morning or late at night. I had to use an OTC inhaler..which I could only use once a day. I pray that doesn't happen this time. So I understand how you feel about asthma. Living with that continuously must be so upsetting. I am so sorry…do they have it under control for you?

  • K8sMom2002

    Way to go on losing the weight — it can be even more challenging to do that when you have PCOS, thyroid issues AND you're on steroids!

    It would be worth it, I think, to check back in with an allergist since it's been a while since you've seen one. Allergists are also trained in immunology — the body's immune response. So they have extra training in that area.

    Another reason you may want to reach out to an allergist: OTC inhalers are not available anymore, and if you were having to use a rescue inhaler every day, an allergist might have a better long-term plan for you. 

    An allergist can also advise you if changing up or increasing your daily antihistamine could help. My DD's plan for environmental allergies is to increase her dose to twice a day during the early spring if she's having really tough symptoms. But you would need to speak to your doctor AND your pharmacist before changing your meds.

    Fingers crossed that your breathing/coughing issues don't re-surface!

    My asthma is pretty much under control these days — thanks for asking! Weird things trigger it, like weather and temperature changes. A symptom diary is how I figured out why some days my asthma was worse than others. 

  • Brenda Silvia-Torma

    @Justdontunderstand, I'm so sorry this is happening again! It sounds like you’ve seen lots of doctors. Are you being followed by an endocrinologist? They may have more insight as to a possible connection between chronic hives and thyroid conditions.  I'll be thinking good thoughts for you! Sending hugs,

    Brenda

  • Brenda Silvia-Torma

    Hi again, you may be interested in learning more about a couple of resources that we have on the topic of chronic idiopathic urticaria. See below for links to our blog post and symptom tracker:

    • Blog article:
    • Symptom Tracker:
    • Program website:

    Thanks!

    Brenda

  • Justdontunderstand

    Thank you for your kind words. It really does help to know that I'm not crazy and others understand. Thanks for the articles too, so far everything I've found has been super beneficial even if it's just emotional help. 

  • GigiGibson

    My endocrinologist has me to 0.5mg per week only when stable. Took me 11 months to get to 3.5 and found that is too low for me. Will probably be at 5 daily. 

  • Shea

    I would love to get below 10mg on prednisone for my disease Churg-Strauss Syndrome– a chronic allergic disease involving small blood vessels, lungs, heart and other organ systems. My goal is to get under 10mg which is tbe level my doctors told me my body will be able to start producing cortisol on its own again, and symptoms of prednisone go way down.

    I dont have thyroid problems but I have had to be on prednisone (20mg now) for over 6 years now and I cope pretty well on that dose, but every time I lower, my asthma symptoms and fatigue come back full force–so I am staying on my stabilizing dose for now and looking into other things to help, both medical and lifestyle, and then the plan is slow taper (by 1 mg as tolerated).

    I am lucky to know my allergic triggers. I am highly allergic to cat and dog dander, and also allergic to environmentals like molds and pollens, and I also have a few food allergies–some of tgem vert anaphlactic and some with  hives and vomitting (nuts, apples, grapes, peaches, pears, plums) and have a big sulfite sensitivity… So knowing triggers abd practicing strict avoidance is huge for me.

    So… It takes time and attention to know what is triggering symptoms. You can track them in a diary, and it takes patience, and doctors to help do tests (allergy tests is a definite recommendation–preferably skin tests over blood tests as they are more accurate (I have had blood tests miss allergies that skin tests strongly identified, and I have heard some allergies that are delayed are best identified with patch tests– so checking in with an allergist again is a definite recommendation). 

    We are here for you too– just to remind you that you are not alone–this group has helped me a lot. And you're not crazy–I remember I used to think that same thing about myself especially when I had no real supports– and someone once told me: "what you are going through is real and meaningful." And I needed to hear that–and I have learned so much that has helped me come a long ways in reducing symptoms and lowering on medications and feeling more in control of my disease, and less anxious and happier as a result. I hope you will find the same (or better) and find some answers!

  • Justdontunderstand

    Thank you so much for your advice and story! Bless your heart for all your allergies!! People just dont realize how dibillitating this  kind of stuff can be. I'm glad you can get it moderated though at least. I am definitely going to start a journal. Maybe with that and another allergy appointment or dermatologist will be able to help!

     

  • Justdontunderstand

    I am doing okay. I ended my last z pack of prednisone last Friday. I have been journaling my day's. I went 6 days and didn't have a breakout but have broke out the last 3 days but it's been very little. Still itchy though. I am still taking my zyrtec in the am and ranitidine 2 times a day but my doctor gave me vistaril to help with the itching. I dislocated my shoulder and have had to sleep on the couch since April27th but since then my breakouts have not been as severe. I burned up in bed with my husband so heat definitely intensifies them. My doctor wants me to come back if I'm still breaking out but unless I start the bad breaking out or swelling in my lips and stuff again I'm gonna try to tough it out. I take the vistaril at night along with an anxiety medication. I'm beginning to wonder if it's not my nerves that are the issue.  I'm a worry wart. Thanks for checking on me. How are you?

    .

  • Brenda Silvia-Torma
    Justdontunderstand posted:

    I am doing okay. I ended my last z pack of prednisone last Friday. I have been journaling my day's. I went 6 days and didn't have a breakout but have broke out the last 3 days but it's been very little. Still itchy though. I am still taking my zyrtec in the am and ranitidine 2 times a day but my doctor gave me vistaril to help with the itching. I dislocated my shoulder and have had to sleep on the couch since April27th but since then my breakouts have not been as severe. I burned up in bed with my husband so heat definitely intensifies them. My doctor wants me to come back if I'm still breaking out but unless I start the bad breaking out or swelling in my lips and stuff again I'm gonna try to tough it out. I take the vistaril at night along with an anxiety medication. I'm beginning to wonder if it's not my nerves that are the issue.  I'm a worry wart. Thanks for checking on me. How are you?

    .

    So glad you had a stretch of time without a breakout! And it's great that you figured out that heat intensifies the hives…that makes a lot of sense! 

    I'm sorry about your dislocated shoulder–how long will that take to heal? Anxiety can definitely take a toll on the body…have you talked with your allergist about that yet?

    Feel better!!

    – Brenda

  • Justdontunderstand

    I am going to hopefully have surgery on my shoulder as it has dislocated 7 times in the past 15 years. And that will take about 6 weeks to heal with physical therapy. I go tomorrow to discuss surgery options. My anxiety is through the roof. I take medicine but sometimes it doesnt seem to help. I haven't made an appointment with an allergist yet. 

  • Melissa G

    I hope your appt with the surgeon went well today! That dislocated shoulder sounds very painful. 

    It is encouraging that you had some time without a breakout.  I hope it does not continue to get worse. 

  • Brenda Silvia-Torma

    @Justdontunderstand, how was your doctor's appointment on the 8th?  Have you figured out what type of surgery you will have for your shoulder?

    Thinking good thoughts for you!! 

    – Brenda

  • Justdontunderstand

    Thank you Brenda!! Unfortunately my doctors appointment was a huge waste of time as they messed up which doctor I was supposed to see and basically told me the same thing I already knew. So I have to go back June 12th to supposedly speak to the surgeon. I am praying for an opening for real soon in the schedule. I will be out most of the summer into fall recovering but that's okay…I'm sure it will be worth it.

    On another note my hives are still appearing but not as bad or as many as they once were. I pray those are going away too. I am still having an episode here and there of my eyes and lips swelling. My doctor wanted to get me in with an ear nose and throat doctor but with me missing work because of my arm I had to postpone that until I get more time accumulated at work.

    Thank you all for checking on me. I hope everything is going well for you.

  • Melissa G

    Yikes, that is not good they messed up with the appt! I hope when you have the appt that then can post you for surgery quickly. 

  • Brenda Silvia-Torma
    Justdontunderstand posted:

    Thank you Brenda!! Unfortunately my doctors appointment was a huge waste of time as they messed up which doctor I was supposed to see and basically told me the same thing I already knew. So I have to go back June 12th to supposedly speak to the surgeon. I am praying for an opening for real soon in the schedule. I will be out most of the summer into fall recovering but that's okay…I'm sure it will be worth it.

    On another note my hives are still appearing but not as bad or as many as they once were. I pray those are going away too. I am still having an episode here and there of my eyes and lips swelling. My doctor wanted to get me in with an ear nose and throat doctor but with me missing work because of my arm I had to postpone that until I get more time accumulated at work.

    Thank you all for checking on me. I hope everything is going well for you.

    Ugh, that's frustrating that it was a waste of time!  When that I happens, I wish that we could charge the doctor with a copay!  Our time is valuable too 

    That's great the hives are lessening…did you call to see when you could get into see the ENT? If they can't see you for a couple of weeks, maybe you'll be able to accumulate time before the appointment? 

    – Brenda

  • Justdontunderstand

    It went well. Surgery schedule for June 29th. I hope it goes well. I am ready for my arm to be back to normal, I've suffered so many years not being able to use it like I needed too. My hives are still coming more so than they were but not as bad as the beginning. Wish they would take a hike! Still swelling in my eyes and lips too. 😶🙄

  • Melissa G

    Glad to hear the surgery is scheduled and soon! Sorry about the hives and swelling, that has to be uncomfortable!