My thought was anaphylactic shock from hives allergies

For 10 years I’ve been suffering with what my gp thought was anaphylactic shocks from allergies. Finally saw a specialist last week, who knew straight away that it was Chronic urticaria and angiedema with severe anaphylaxis. Lots of ambulance rides over the years.
My questions are please:

  • does anyone else have under active thyroid?
    One minute mine is doing nothing and the next blood test seems to be okay, but then drops dramatically again?
  • the specialist told me that the condition only lasts for five years, I’m on ten and counting.
    Anyone else going on for as long?
  • what medication will I be given?
    I’m waiting for the specialist to put his report together, but he mentioned injections?
  • anyone else have really bad back/shoulder and arm pain? I’m not sure if it’s connected.
    Finally – apart from antihistamines, what can I do to stop the constant itch? Pic is from the last four months after anaphylactic shock (aftermath) now back to normal with hives and itching – awaiting the next.
    Sorry for all the questions, I was sure I was just allergic to everything. Was nice to speak to a specialist who understood what the issue was. Thank you and happy new year x

Discussion


Simone Goode I have an underactive thyroid. I’m going to a specialist next week. I can keep you updated on what they tell me.

Charmaine Cotter Simone Goode yes please, that would be great. I’m thinking it’s all linked.

Shaina Monks-Deem If you are talking about TSH it changes all day everyday, can’t go by that. It’s not even a thyroid measurement. You need a full thyroid panel done and compare results to optimal. (FT4, FT3, RT3, antibodies)

Charmaine Cotter Shaina Monks-Deem I’m just reiterating what my gp has said in the past. It’s given up the ghost so up the levothyroxine then have it stopped because my thyroid is normal, then it’s low again? Hopefully the consultant I saw will do those tests from the bloods I had there. Thanks

Shaina Monks-Deem Charmaine Cotter your dr isn’t thyroid literate. He’s chasing TSH.

Charmaine Cotter Shaina Monks-Deem sounds about right, why it took so long for him to send me to a specialist. Hopefully the consultant will do those tests. Thank you

Shaina Monks-Deem Charmaine Cotter hopefully it’s not an endo, you will just be in the same boat. Functional medicine doctor is your best bet.

Frances Henry I’m so glad you found us and are on the right track! I was dealing with this crap for months without knowing what it was, I can’t imagine the mental trauma of not knowing for years! That must have been really hard. Well you are in the right place now!!
As for itch I’m sure you’ve tried it all but- I like cool oatmeal baths, ice packs, and the Lush “Dream cream” to soothe my skin after a clawing and sobbing session.
Best of luck to you, and hope you have a very happy New Year!

Anna Stone I have Hashimoto’s thyroiditis which is another autoimmune disorder that attacks the thyroid. I take levothyroxine daily. I’ve had it for 10 years and developed CIU in July. I started xolair shots 4 months ago and they did nothing for me for 3 months and I felt like crap for several days after them. But after this last set of injections, the hives are gone and it didn’t bother me at all afterwards. And I’ve FINALLY been able to wean down on my prednisone! Fingers crossed I can come off of it entirely before too long.

Ashley Cvetkovich 15 years here, no answers, a few different docs, said to have no thyroid issue (aside from all the way back to gg on moms side including mom) and no remissions really, just slowed a bit during pregnancy . I take Zyrtec mainly twice a day and currently tired all the time, no energy what so ever, hair thinned quite a bit, dryer skin and scalp, mood swings, possible pcos as well

Dave Dev 10yrs… you’ve probably tried everything…. almost everything… have you researched Dr Ty Vincent and LDA/LDI Immunotherapy for both your thyroid and hives? Best of luck to you.

Jessica Nutt Sorry to hear you’ve had for so long. I was dx with autoimmune about 10 years ago. Thyroid tests always come back negative though.

Margaret Crider I had thyroid cancer, had surgery to remove it in 2005. I’m now hypothyroid. It is believed there is a connection between autoimmune disease and urticaria. You should seek out an immunologist ASAP. They are well versed in treating chronic urticaria. You can ask to test if yours is idiopathic or autoimmune.
As for lasting 5 years, that just depends. You can google it but there’s a percentage of people who’s urticaria will go away in 1 year, 3 years, and 5 years but for all of them the likelihood of reoccurrence is high-sorry. There are people in this group that have been suffering all their lives.
As for meds, most doctors will prescribe first and second generation antihistamines. First gen are sedating, second gen aren’t. But they may also prescribe antacids such as Pepcid, ranitidine, or immune suppressants. Xolair is a popular drug but tends to work better for people with idiopathic urticaria vs autoimmune.
As for the back/shoulder pain, inflammation is a big part of urticaria and it’s common to have aching bones and muscles so that sounds normal.
And for the itch, I’m pretty sure hydroxyzine (a first generation antihistamine) is recommended for the itch but other meds might help. You might also experiment with hot/cold compresses, aloe Vera gel, etc.

Ancora Imparo I wonder why these are not listed as symptoms. I feel like the name makes it seem like it’s less than what it is.

Elise Rappoport Hey Charmaine. Happy new year. A lot of us on here have 1 or more additional autoimmune diseases. Weirdly my mum and gran both have/had under active thyroid. We’re a very autoimmuney family clustered around thyroid, chronic urticaria, coeliac and Crohn’s disease. I’ve had urticaria for 13 yrs with remissions.

Mary Del Prete Thomas Multiple autoimmune issues…hashimoto’s included….had CIU for 42+ years

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