Hives (Chronic Urticaria) Going out of my mind now trying to work out what is wrong!!

Posted , 12 users are following.

Hi, I am a 23 year old female, from Ireland but moved to Glasgow for a job last year. Was completely normal, healthy and happy no previous medical issues until 01/10/15 when I got the flu vaccine through work.

I immediately suffered a local reaction and was told it was nothing to worry about and I will be ok. Since then I have been experiencing hives daily and angioedema on occasions. There is no pattern or logic to my hives and swellings. It has been 5 months now and not improving. I am getting more and more low with this horrid condition. This is a call from help!!

I have had allergy tests for egg & dairy - negative.

Bloods all "normal" except elevated white blood cells.

Been tested for liver & kidney function- normal as well as thyroid function which is normal.

Had test for coeliac which is also normal this was the immunologists last appointment.

They say it is stress, but I am not stressed, I no stress and this isn't stress or how my body has coped or reacted before.

I know the flu vaccine has caused an upset in my immune system, but I don't know what it is or what else to do at this stage.

I am going back to GP in 5 days, I am asking him to test vitamin D levels, test for stomach ulcers/h.pyloric and to test for lupus and common allergies (mould & dust mites) clutching at straws.

Any help is much appreciated!!!!

Kelly

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  • Posted

    I have just turned 23 so doubt it is menopause. But it is linked to my hormones, i just don't really know how to explain this to my GP cause he really doesn't care!!
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    • Posted

      You need a different GP! Change surgeries it's your right, you can register with any without needing to explain really. But you need to see a sympathetic specialist who won't disregard your worries.  If you are not getting the service from your GP there is an organisation called Patient Advisory Liaison Service. Look on line for your area they will help you.
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  • Posted

    Hi Lorraine, heat is a killer for me too. V worried about going abroad as I love sitting in the sun. Also worried that after 6 weeks on my meds with no hives/itching/swelling that I am getting just 1 or 2 red hot hives each night for last 5 days. When people find the meds work is it just for a while or long term? Also what happens during summer - does the heat make it worse or does it ease off? I had no idea this horrific thing existed and how so many people suffer with it until I had it. My consultant told me last week that he wouldn't need to see me again as the tablets were controlling it but I'm not sure if they are starting to stop working. Kelly definitely try another doctor as I settled with one and suffered for far too long, you need to get some quality of life back. The doctors all blamed stress on the cause of my getting this thing but though I had been stressed I think that was due to coming off the progesterone only pill. Had v aching joints and all sorts of weird symptoms most of which have gone since the HRT kicked in but the urticaria stayed and got intensely worse and now I rattle I'm on so many tablets to sort out the urticaria!
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  • Posted

    Also just wonder whether either of you had the weird thing with your throat and chest where it feels like you have swallowed a stone and it sort of comes and goes like you can't swallow? Often with a pain in chest and cough/wheeze? Thankfully that stopped when I started the meds 6 weeks ago.
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    • Posted

      Nadia what you describe is anxiety I used to have that as well even before I had urticaria. The medication I was on then is not suitable for anyone with urticaria. I was placed on Doxepin during my urticaria which helped anxiety and stress really well but it doesn't suit everyone but it might help both you and Kelly as it has some antihistamine in the drug.  I don't think we ever truly get rid of urticaria it goes to sleep and we have to be careful not to wake it up. My message is don't get complacent.
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  • Posted

    I started by going to the ER for swollen lips and eyes along with welts / hives all over my body. I'm not big on doctors or for that matter ER rooms. Two days later after my ER visit I visited my PCP and I was referred to a specialist. The allergist diagnosed me with chronic spontaneous urticaria or angioedema. I was given nothing but a epinephrine pen and told that there is no cure nor anything I could do to help myself. I requested testing for everything in the world via blood tests, std tests, infectious disease test, and everything came back negative. I was kind of hoping for something to come back positive so that I would know what was wrong although that wasn't the case.

    I'm not the type of person to tell everyone my business although hives aren't anything you can hide! While at work a woman friend looked at me and could see by my face that something was wrong. She questioned me and I told her. She stated that she had the same thing occur approximately 4 years ago and that she knew what I could take to stop the hives. I felt very exited. She also stated that after four years it still exists.

    This is what I started taking that ended my hives / welts:

    1) Famotidine 20mg, 2 tabs twice daily (40mg twice per day) (OTC). 2am and on 2 pm.

    2) Zyrtec (cetirizine) 10mg, 2 tablets daily (OTC) 1 am and 1 pm.

    I purchased both of these pills from Costco although I'm quite sure you could buy them anywhere.

    For what it's worth I'm not a medical professional or in the medical field at all. I searched the Internet when the doctor gave it a name and could find nothing, I was very sad. I hope this works for you although I accept no responsibility for the outcome in your personal outcome.

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  • Posted

    First thing you have to accept is there probably is nothing the medical world can pin point as wrong.

    I have had every test you mention and pages and pages more... three rounds at GPs and a round at a provate hopsital which cost me 1200 quid. 

    Every single one came back saying nothong was wrong and that I was positivly healthy. 

    Only one which was very low was Vitamin D... but as the consultant said, we live in a Northern European country I bet most people's is low.

    Stop trying to look for a reason, it will only drive you mad. I have been there and done. 

    If it doesn't go you learn ways to cope. I am in my ninth month now, but there are people who never get rid of it. 

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  • Posted

    When you said your thyroid levels are normal, what actual values were they, the NHS tolearance for normal is very wide. Did you get tested for Thyroid antibodies? Also, ask to get tested for Blastocystis Hominis and D. Fragilis as well as H.Pylori, or get that done privately (it takes multiple stool samples). Find out your Eosonphil count, high count will usually show if there's a parasitic infection.

    You moved from Ireland to Glasgow, which is much much colder, have you done an ice cube test on your skin to see if that causes hives? I have what I thought were allergic hives but eventually discovered through bathing in cold water on holidays that it was a cold urticaria. Hands are one of the places I will first break out on. Sometimes it looks like sunburn rather than hives but will go away leaving a burning itching sensation when I warm up.

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    • Posted

      Oh, and get a referral to an immunologist who specialises in Urticaria, there are autoimmune urticarias you should be tested for antibodies for. There's a few good doctors in the UK but I don't know of any in Scotland, though there probably is.

      Have you tried an elimination diet to rule out food or drink allergies and looked at all your medication.Aspirin/Ibuprofen/Cocodomal/Paracetemol are common problems and could show problems with Salycalic acid.

      How do you feel after wine or seafood or parmesan (all very high histamine)?

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