After suffering with hives and angioedema since November 2018 and seeing a couple GPs and a dermatologist and having multiple blood tests and taking what feels like so many tablets a day (to no avail sometimes) I finally feel like I'm onto something. As I've been getting no satisfaction or answers I asked to have my thyroid checked as the condition is in my family whether it be under or over active, and I read online last year that 12% of people with chronic urticaria can be suffering with an autoimmune disease, so I pushed to get it checked. I got my results back a couple days ago and I seem to have something wrong with my thyroid so have been urgently referred to a thyroid disorder clinic to try and get some answers and see what is actually going on. I have my suspicions of hashimoto's disease or something due to my antibody numbers being very high, my TSH level being a little higher than the normal range, my symptoms and what I've read online and just putting it all together in my head, but we shall see. I feel relieved that I'm getting somewhere finally (slowly but surely) and I really hope things can get rectified and I can go back to being "normal" (and by normal I mainly mean not having hives every single day because I'm tired of it!!). No one I know with thyroid issues has suffered with chronic urticaria and it makes you feel like you're a lost cause half the time because no one knows what to say or do! It seems to be a big mystery and nothing really genuinely fixes the issue. I'm taking 4 antihistamines a day and I still suffer whether it be a mild cluster of hives on a certain part of my body or a more widespread flare up. I'm really hoping if there is something wrong with my thyroid that it can be treated and my urticaria will sort of go away as I've never really been a rashy person up until now and whilst it is what it is there are days and weeks where I still find it hard to come to terms with.
If you got this far, thank you for reading and I appreciate your time I just wanted to come here and offload and maybe see if there are also people out there like me! I hope we all find satisfaction somewhere along the line.
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Milkytea
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I do not have chronic hives but I did experience severe hives after my TT in February. There are some folks on the forum who do have chronic hives and if you put hives in the search box you will find their posts. I myself posted an article on hives and autoimmune disease - just click on my name and you will find it. I’d like to write more but not feeling well enough right now to go into more detail.
I am so sorry you are having such a hard time and I hope you manage to get this sorted out. Wishing you all the best and sending good wishes your way.
Thank you so much for reading and responding, I shall check out your article and also search up hives on here to see what others are saying thank you again, please look after yourself and I am sending you good vibes and well wishes
Gluten can be a cause. I suffered chronic hives for years. But, when I had to stop eating gluten because of Celiac's, the hives stopped completely. But, as Marz said, just a sensitivity to gluten could be enough to trigger them.
They are an unbearable misery that no one deserves, to be certain. I hope you can find some relief very soon.😊
Yeah I've been seeing a few people saying gluten can be a culprit and to try cutting it out, which is interesting. I was tested for coeliacs disease a few years ago when I was anaemic and the tests came back saying I wasn't but I guess maybe I could have a bit of an intolerance. Gluten isn't great for anybody I don't think so it's definitely worth having a think about cutting down or cutting out! Thank you for your response, it was lovely and insightful I hope you're well, look after yourself x
As someone who loved all things gluten, I know how difficult it is to let it go. But, unfortunately there is no "just cutting down" where gluten sensitivity is concerned. It's a complete life long avoidance scenario. I also have Dermatitis Herpetiformis (DH), which is the outward (painful rash) manifestation of Celiac Disease. So, for any person prone to skin issues aggravated by gluten, one would certainly want to avoid it due to the possibility of Celiac and DH developing down the line. This is especially true if you have Hashimoto's, which is autoimmune, as Celiac and Dermatitis Herpetiformis are. Celiac Disease is bad enough, but DH is something I wouldn't wish on my worst enemy.
I would suggest elimination of all gluten to see if you notice an improvement in the hives (it can take several weeks to really begin to see an improvement. [But, bear in mind that each exposure to gluten excites the immune system for 3 months. (pubmed)]
I speak from experience. Hives (though miserable) are a walk in the park compared to DH. And taking steps now to cut any further skin issues off at the pass (autoimmune or not) would be well worth tossing gluten to the curb (at least until you're certain it isn't causing/aggravating your skin issues.)
Ah thank you so much! It's hard to change your diet when you don't do the family food shop and your parents don't want to make such a change but I shall try to do my own shop! Thank you again
If you have Hashimotos confirmed then it is possible you have gluten sensitivity which in itself can cause hives - sorry the correct name has disappeared 😊 Being gluten free could help ..
Thank you for your response yeah I'm seeing a few things about gluten and how an intolerance could be part of the issue! Always interesting to hear these sort of things, cutting down on or cutting out gluten is definitely something to take into consideration if it may potentially diminish the chronic urticaria. Thanks again take care
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For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
If you have symptoms and raised antibodies Levothyroxine should be prescribed. Standard starter dose is 50mcgs (25mcg if over 50 years old)
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards (testing bloods 6-8 weeks after each increase) until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
Hello Milkytea. I am hypothyroid and have been for years. I had some lazer treatment about ten years ago that kicked off hives and I’ve been suffering with what the medical profession call chronic idiopathic urticaria (hives) ever since. I have seen immunologists and skin specialists and all they can say is “they will burn out!” My GP laughingly said “they’ll burn out by the time you’re ninety”. I’m glad he finds it funny because, as you will know, it really is not! They don’t just itch, they hurt and some times it’s agony to sit down, because I get them on my bottom, groin, legs even my ears, if they don’t like the earings I wear. Unfortunately anti histamine makes them ten times worse, so the only relief I have is aqueous cream with 1% menthol. No one understands, they think it’s just a bit of an itch! I wish you well and hope that you can find a solution to your problem.
Hi Ellyblue - have you looked into histamine intolerance? I suffered with on-off hives and a whole lot of other stuff for years but it was only when I changed my diet to stop adding to the histamine load that I got it under control. There is a link between thyroid issues and histamine intolerance I think. Perhaps worth investigating
Yeah my dermatologist has diagnosed me with chronic idiopathic hives and you are right it literally is a pain in the arse and it feels as though nothing really helps which sucks! Obviously I have my good days like today I only have a few like I've got a big one on my foot right now that's burning because I've scratched it too much, oops. I get them anywhere and everywhere on my body so I feel you! People always notice when my ears have hives on them coz they go bright red haha, I'm like "yeah they're burning, someone must be having a good old talk about me!" - if we don't laugh we will cry! I wish you well also, I hope they burn out well before we hit 90!!
You may want to see an immunologist who can check you for mast cell activation syndrome. It often goes along with autoimmune conditions. There are many mast cell stabilizing drugs. Also important to identify triggers.
Oh that's interesting, thank you for the insight! Yeah my dermatologist asks about patterns and stuff and I never can put my finger on any triggers or patterns, they're kinda just constant no matter what I do or where I go or what I eat blah blah blah. Very frustrating, I hope they disappear as quickly as they made an appearance but I'm growing impatient already haha
Yeah I tried that, I went vegan for a while but still had the same problems! Stopped wearing perfumes and everything but still the same symptoms. I gave up and just carried on with life in the end :') I've not tried cutting out gluten completely so maybe that will be more enlightening.
Hi Milkytea, sorry you are so poorly, but you are not alone, I too am struggling with daily unbearable itching where my skin bleeds. It is awful I have had to cut all my nails short as I scratch so much my skin bleeds, especially in my scalp. I have Hashimotos, bowel disease which is connected to the Thyroid disease. I am struggling with this dreadful illness in so many ways and it has made me so very ill, that I have thought about ending my life. I have so many symptoms literally from head to toe, from bleeding teeth gums, loose tooth, red painful eyes, the list goes on and on.
I am on a combination drugs of T3 and T4 as I became so ill just on T4 and my body was so low onT3 I became intolerant to T4. I have days when all I do is sleep and cannot even go out. Constant colds and chest infections, loss of hair on my eyebrows and scalp. Terrible dry skin with rashes. Memory is terrible, where some days I can not remember where I have put things especially where I have parked the car. This disease is a constant struggle as my blood ranges are constantly changing and will not stay within the normal range
I'm so sorry to hear about your struggles but please know you are not alone and people do care and are willing to offer help and advice if they can. If you keep bugging the GP maybe they will help get you feeling a little better than you currently are feeling but I know it's very difficult as things aren't black and white and everyone is different. There must be something out there that can alter things even if its ever so slightly though! I'd also suggest doing your own research but I'm pretty sure you've probably already done so much of that like we all have :') keep going and trying new things and mentioning things to your GP or specialist and I really do wish you well and hope you find some relief and satisfaction. I'm sending you positive vibes and well wishes look after yourself x
I had the exact same thing 15 years ago when my hashimotos started. Broke out in hives snd angioedema every night for 3 months. If i could turn back time. This is what I would do first. Reduce stress and read Dr Amy Myers books AutoImmune Protocol, and her thyroid books. Immediately go on the AIP diet and go from there. Once you start meds theres no going back and this can be put in remission with these methods. Do yourself a favor and read the books, change your diet and relax. I wish i had known sooner.
I'm seeing a lot of people mentioning diet in some way or another and how it helps a lot so it's definitely something to consider! Thank you for your response, I hope you're well. Take care
If you have a hard time changing your diet, first cut out all gluten, its the number one trigger, then dairy and go from there. Pills get you feeling ok but short term. I spent 15 yrs chasing lab numbers and increasing dosage every year. It can be reversed or put into remission if you change diet now. I really wish i had the chance to start over where you are now. If you can find a functional medicine doctor that would help. But even they get carried away wanting to sell supplements and programs. The info is in the books and you can do this yourself! All the best to you!
I'm sorry you are also dealing with the dreaded hives! Thank you for the little ointment suggestion though, I shall look out for it! E45 eases the itch of mine sometimes but I hate having to rub cream all over my body and it doesn't make me feel very confident in my self. I get a bit self conscious not only of the hives but the fact I'm smothered in cream that doesn't exactly have the best smell :') I stupid thing to say really if it gives you some relief but again it's not a cure or anything only a very temporary thing so the frustration continues! But thank you again, I hope you are doing okay. Take care of yourself
Milky tea I dont have much to offer that has not already been said other than to hope you have a helpful appointment with the thyroid specialist and to encourage you to come back to us with blood results if it doesn't go well.
Luckily I don't suffer with hives but I do have hay fever. I also seem to react to insect bites, last summer was extremely hot and a bee stung me on my mouth. I felt a tingling feeling and my lip swelled up to twice its size, my husband found it funny and said I looked like Mick Jagger. I had some antihistamine cream which I keep in just in case I get stung by a mosquito or a midget but it had no affect this time. I ended up going to the local walk in clinic to get some relief and the nurse I saw thought I had a reaction to a lip filler lol. I was given some stronger antihistamine tablets on prescription and my lip did eventually go down.
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I just wanted to come here and offload and maybe see if there are also people out there like me! I hope we all find satisfaction somewhere along the line.
this fuels my pessimism! I hope you find something that works for you eventually, gotta start charging these hives rent!
Potential Hypothyroidism? 
Another update on potential meds intolerance 
Advice on under active thyroid to potentially over medicated..
Do high levels of T3 have to potential to shut down T3 receptors?
