every urticaria going ......

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8 years of this, under 3 diff hospitals, tried every remedy...it's so unfair there's nothing to help!

I had a thyroidectomy back in 2007 at 22 years old having developed graves disease (thyroid eye disease). Since then I have had non stop itching and burning to my upper thighs and upper arms (daily) other areas itch from time to time. Some days I can't even dress... it's effecting my whole life. So distressing especially now I'm a new mum even more so. Previously I was suicidal over my skin but now I have somehing to live and fight for... my son and my hubby. I'm determined to not let this beat me but can understand why people say 'a life like this isn't worth living' because I've felt like this too many times...

I wasn't going to have a baby for the fear of the skin worsening,then told because of my health it'd be unlikely to conceive anyhow... last ear after getting married I got pregnant. The first 1-3 months were a nightmare unable to take antihistamines the times I did I threw up immediately like my body was rejecting them. The Dr gave me an alternative Puriton which is safe to use during pregnancy but not strong enough to use previously. .. this helped and months 3-6 (second trimester) of my preg my skin was amazing. So my questions to the Dr is what happens to your hody during these months as theres obviously a hormone or vitamin which helps as I was able to sleep,wear tight clothes leggings and jeans and just be happy! 6-9 months (third trimester) well... horrendous. Living on 3 hours sleep if that most nights my skin drove my insane to the point I was throwing up crying all the time from the pain of the itching and burning. It was so bad the end of my preg I had to start my mat leave earlier and also I came downstairs 2am one morn as I was worried my it Hong would wake hubby due to start an early work shift and where I'd got into a state I felt tingly and dizzy and fell down the stairs at 37 weeks preg on the tue... hosp declared me fine to go home after a day in hosp undergoing heck then the fri (3days later) I came over dizzy from the pressure of the itch and burning and went into labour most likely triggered by the fall down the stairs.

After birth wow skin was best it's been for 12 weeks so again what happens at the point of birth to make your skin amazing with no pain or itching!?

I've read every post on here and separately google every diet mentioned cream etc and am going to try everyhing. I'm currently under a dietician and we are cutting put various gongs each week to see if certain triggers make a difference.

I can't understand it... everyone says I have lovely skin but it's not always something you can see. I mean my arms have red bumps under the skin which get darker and angry when having an itch attach and thr bumps then rise but the thighs mostly there's nothing to see they look normal most days even when having an itch attack.

I can't bath or shower for long water triggers mine, as does my sweat, friction I. E. Changing clothes... recent tests undergone show I'm allergic to cinnamon and cinnamon in most body products however even after cutting these out there isn't a huge improvement. It effects every aspect it breaks my heart when I'm to sore to hold my 4 month old baby so have to sit him on the bed to feed him and hold him with one hand feed woth the other because sitting on my leg will cause me so much agony and pain for hours on end. I don't remember the last time I had a full nights sleep more than 4-5 hours because of the rash, I can't remember waking up and feeling non itchy othet than when I was preg!

Being on holiday in a hot country Bizarly I'm norm good after 2 days but once home it starts again it's so bizarre yet if I get too hot here in the UK I get an itch attack. My colleagues moan when I open the window but sometimes I need to cool down to calm my itch.

I'm currently taking 2 x citorizone twice a day morn and night and portion every 4 hrs.

I don't expect a cure but somehow or anything to just be able to have a few good days and even 1 or 2 decent nights sleep a week to recharge and be able to deal with things better as being a constant zombie doesn't help, I don't know why my husband puts up with me it makes me so moody and snappy when I have an attack and effects our sex life at times when it's really bad.

It started slightly prior to my thyroidectomy when diagnosed with overactive thyroid I was on carbimazole medication It seems a coincide ce to start at this point. Perhaps as some mention stress plays a part which is why some days are better or worse than others.

If I won the lottery 1st thigh I'd do is get a doctor to spean a few months with me seeing how my daily life is effected to see if they can see I'm doing somehing that brings it on or not... it's just so bizarre. I'm a good kind hearted person but this brig me down so much.... really am at the end of my tether....

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5 Replies

  • Posted

    Oh and aquallergenic to so allergic to water wheb I wash... can it get much worse!?
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  • Posted

    Hi

    It seems we all suffer much the same, and told you just have to wait as no real solution by the Gp's, i think as i've said in some of these messages, the body's hormones are not right or thyroid, also read with the thyroid the basic check may not be thorough enough, you have to have t3 t4 what ever that is, as these effect the immune system which fights back with Histimine, all of us i would say at first think it is food, soap, etc, then realise it is something else that is causing urticaria hives, i feel sorry for the people who have it on their eye balls,, bad enough just on the body, i'm suprise there is not more research done as they say 20% of population have at some time urticaria, some for a few weeks just like a allergy, others long term,

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  • Posted

    You need to use intramuscular autologous plasma.

    Don't eat sugar, gluten, milk.

    Additional antioxidant fex. Oxybiane.

    Good to do biological bilans.

    Greetings smile.

    Peter

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  • Posted

    I am so sorry to hear that you are going through so much and it must be difficult being a new mum.. you don't say if you have been diagnosed. Assuming it is urticaria. ..why have you not been seen by a specialist. Urticaria has many forms and if you say that clothes can irritate you, maybe you have dpu delayed pressure urticaria which I suffer from. Ive had it for 7/8 yrs and its not easy. However I do notice certain events can trigger it off. One example is that about 4years ago I had a back operation and my urticaria came back worse. It is trauma to the body such as childbirth.

    I have had a vast amount of different medications and now been given injection form called omlazibub. This has been 90% effective. And as you can gather than is very good odds. I do think that maybe thyroid problems have some connection. My son was born with hypothyroidism (underactive thyroid glands). Has been on thyroxine since 2wks result from guthrie test. On these meds for life.. I don't have a thyroid problem but my twin sister did have... who has urticaria like me. Any big things happening in your life like moving house, bereavement, childbirth, operation or some kind of big stress can exasibate the condition. Hope you find some relief very soon.

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  • Posted

    Well our stories are alike and it seems modern medicine can't find out wtf is going on. Last week i have been to an allergist, an endocrin doc and i keep getting UVB treatment together with antihistamines and stereoids, but nothing.

    i too am a graves patient. i too had thyriodectomy. my itches too began prior to thyriodectomy when i was trying methymazole. i am afraid to get pregnant at all. 

    now xolair is recommended, any ideas? 

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