Hypothyriod and urticaria

[Alice70]

Hi ,I suffer with chronic urticaria (hives) I have been treated with levothyroxine for 36 years,I have constant urticaria foe 10 years ,my dermatologist has told me that the urticaria is related to my hypothyriod, I have had private testing for my thyriod which TSH is in the right place ,but my thyriod antibodies are extremely high ,wondering if anyone else has urticaria related to thyriod

[Star13]

The urticaria is a form of mast cell response and is common with people with thyroid conditions, however it needs to be treated in its own right rather than thinking that treating the thyroid will take care of the urticaria.You need a certain class of antihistamine and will likely have to stay on them for life. Sometimes it can go into remission on its own but will more likely come back at some point.

Do you take anything for it at the moment?

[Alice70 in reply to Star13]

Thank you star ,yes I am on meds for urticaria ,antihistamines, famotidine, I have been off xolair for two months now ,I have been given montucast to try instead ,nothing seems to be working for me ,I'm going to ask dermatologist can I go back on xolair injection as I am alittle better with it than without it,as my consultant told me it is thyriod related in some people ,I was trying to figure it out that way,thank you once again

[SlowDragon Administrator]

Just testing TSH is completely inadequate

Do you have any other results

How much levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

What vitamin supplements are you currently taking

For full Thyroid evaluation you need TSH, FT4 and FT3 tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum, especially with Hashimoto’s (high thyroid antibodies)

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests early morning, ideally before 9am and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

[Alice70 in reply to SlowDragon]

Thank you slowdragon for all this info my gp did test me for Coeliac came back normal, I think I will get vitimins bloods done

[SlowDragon Administrator]

Urticaria and Hashimoto’s

Gluten free diet may help

Get coeliac blood test done via GP BEFORE considering cutting gluten out

Root causes

thyroidpharmacist.com/artic...

[Star13 in reply to SlowDragon]

You may find this an interesting read:thesibodoctor.com/2020/04/2...

[Alice70 in reply to Star13]

Thank you Stsr I have found this interesting, and going to look into further ,funny thing I've always suspected my urticaria was more related to stomache problemproblems

[Alice70 in reply to SlowDragon]

Thank you slowdragen ,I found this link very interesting

[Alice70]

I was hoping to find someone else on the forum that suffered with urticaria related to thyriod as I would of been interested to see what meds they used ,on the other hand I wouldn't wish chronic urticaria on anyone

[Zetp]

Hi there @Alice70, I was just about to post something about my urticaria, when I saw your post, I am sorry to hear you haven't found treatment for so long. Has it been very active all this time? I've had mine for over 20 years now, but it's been showing up and then going away, the longest episode previously lasting about a year, but my last episode is 3 years long so far, very active, daily rashes, with angioedema as well, face swelling, hands and feet swellings, I look like an alien every so often or like I've had a bad Botox job done, :), and terrible rashes, with no sign of stopping yet. Every now and again it would ease a bit for a few days and then increase again.

I have found I have underactive thyroid because of my urticaria, as I read they can be linked, I decided to check it when I was abroad, it turned out I was right, and had to start treatment abroad, as my GP didn't think I was, as my levels were 'within the norm' without looking at how high my antibodies were and that I was at the high border of my TSH (the so called 'normal levels' here are so wrong!) After a while, I was lucky to be seen by a doctor in training at my GP's clinic , who couldn't believe I wasn't treated there when he saw my results, so finally I managed to start getting treatment via the NHS and see an endocrinologist, the one and only time in the UK... this was about 9-10 years ago.

I have tried all sorts of antihistamines for my urticaria, currently on 4x Levocetrizine. Tried montelucast, no help, just side effects. Tried omalizumab injections, same story. So currently waiting for an another appointment at the Allergy Clinic, probably another 2-4 months wait. But I am not holding my hopes up high because I don't think they can do anything.

I have done all sorts of test abroad and here, and nothing has been conclusive, no food allergies, I even checked for different parasites, they came back negative. Some of the food allergies which showed up a little before, all came back negative now. I do have trouble eating all sorts of thing and I am struggling, keep changing what I eat a lot to try different eliminations, but it is so difficult when you have been in this for so long, mentally and physically draining. Limiting in so many activities, it's a constant nightmare and battle.

I do have IBS like symptoms, and I do think it's all to do with the stomach ,I have seen an article link here for connection with parasites again, which just sounds so like me, (this is the linked @SlowDragon kindly posted : thyroidpharmacist.com/artic... ) and I think, even though my tests were negative, (I need to check which parasites they tested again) I am planning to try some natural antiparasitic treatment just to see if it has any effect..

By the way I have tried homeopathic, Chinese herbs, acupuncture, some aurvedic herbs, don't remember what they contained but decided to stop when I was having my omalizumab treatment so they don't interfere may be. Tried some other alternative things and nothing has helped so far. Problem is also it's all so expensive...

I am at a loss...feel like crying sometimes in the supermarkets when food shopping as I don't know what to buy that will not affect me...it is so stressful to have it for such a prolonged period...

I am constantly on the low vitamin D border, I can hardly manage to convince my GPs to get me a vitamin D test..so I now just take it as often as I remember. I am on 100 levothyroxine as well...

I have now limited gluten from my diet, it was better at first , now bad again. Started eating meat, better for a bit, then bad again, stopped meat, started trying dairy products, which I avoided for a long time, better for a bit, then bad again, cannot eat chocolate, nuts, seeds, some fruits and vegetables as well, can not drink alcohol, eggs are a struggle, I avoid fish and sea products , and many other things... The only dietician I managed to see throughout this time was of no use, saying it's inconclusive, they are probably right actually as it's not clear.

I do dye my hair, tried different brands, also natural, henna, different washing liquids, etc nothing helps. I might try all natural cosmetics and shampoos sometime soon as well just to see if it helps...I am afraid I am not much help to you but if it gives you some idea at least of what I tried, or a shared struggle...

I am starting to have more and more health problems and I am getting increasingly worried. And I don't know if they've increased because of the urticaria or the chemicals I am being treated with, forgot to mention steroids and steroid injections...rubbish, they help while you take them, afterwards it's just as bad, if not worse.. I am avoiding them now, not that I wanted to take them in the first place, but just because I was trying different treatments...

If I ever do find something that helps I will post it here....and if someone has found something that helped them it would be great to hear!

My thyroid levels are supposed to be ok, but recently did a blood test for hormones, and waiting for the results, so we'll see what they show.. Thankfully , I moved to a new practice, which has the apps you go online in and they show you your test results!!!! Finally! My old practice was a nightmare for results ,impossible to get any. This is great just to be able to be properly informed about your own health....everyone should have access to their results and health records!!!

Most importantly.. don't give up hope, that's what I keep saying to myself.

I have highs and lows, get fed up with all the doctors, systems, ineffective treatments, and have a break from thinking about it all, and then when I gather strength I am on fighting it again and looking for answers and ways... it is very difficult especially at these times, and just seeing the GP takes weeks, seeing specialists ,months, private doctors are an option if one can afford it I guess.. I apologise for how long this has become, I'll stop here now

[Alice70 in reply to Zetp]

Thank you zetp for answering my post ,I don't only sympathise with you I can also empathise with you ,I've been hypothyriod for thirty years had urticaria for ten years ,my consultant is dermatologist, as he diagnosed autoimmune urticaria ,I have never seen allergies as dermatologist told me not allergy so for that reason unlike yourself I've never tried any diets ,I was on omalizumab, now I take 4 fenefexadine, montilucast ,famatidine, none of them work, when I was on omalizumab I had to travel a long way once a month to have it as it wasn't helping I gave it up myself ,but I think I will ask to have it back because although it didn't get shut of urticaria I think I was a bit better with it than without it ,I have chronic delayed preasure urticaria, this means I can't stand to have any clothson that are snug to my skin ,so everything I wear has to be slack ,the worse thing for me is I am unable to wear bra which I find very embarrassing (hopefully I am speaking to a lady here 😀) ,I get big wheels and rash, burning and itching, thank goodness I don't get the swelling ,I am very interested in the link about blastocyst bacteria as I also think in some way my urticaria is link to stomache ,I occasionally get IBS but mostly a bad stomache after eating I've lived on omoprazole, where did you get you test for parasites done ,not sure if blasto is bacteria or parasites, of course if I find any treatment that works I will let you know

[Zetp]

Nice to hear back from you @Alice70 , although I'm sorry to hear you have all these symptoms...Urticaria is such an inconvenient and annoying thing to have.. What is good is that it hasn't progressed from there. I must add Montelucast is no longer used in some countries as it has some weird side effects, they can add to depression and things like that. I was glad to stop those.

My diagnose is Chronic Spontaneous Urticaria, but it does also present as delayed pressure one too sometimes, so I can understand the discomfort you are feeling, although the bra seems to be a problem, and yes I am a lady, it seems that there are definitely more women affected by this. I did some tests for parasites abroad, but also managed to convince my GP for a test here too, just once. All negative.

I used to be on Fexofenadine at first but found it doesn't help me much, and I am a bit better on levocetirizine. I just feel like they are not treating the actual cause, but what that is, is still a mystery to me.. and them.. but I'll keep searching

I could suggest you may be see if you can notice any relation to what you consume and your hives, and if you spot something, you could try to limit it for a brief period, and see if it improves your symptoms a bit,...although as I wrote earlier that's not entirely successful.

I hope we do find some solution to this as having it is so uncomfortable and frustrating.

[Zetp]

Hi Alice, hope you are OK. This is just an update, I finally managed to see an immunologist again, after I think it was 8 months wait. So, what I found out was that I am of the 20% of people that don't respond to Omalizumab, so if you are of the other 80% that do respond to it, it's probably something that could help you. For me there are not many options left. Keep going as I am, or take immunosuppressant drugs, which I definitely wouldn't like to go to, not yet anyway. Apparently it's interlinked with Hashimoto, so according to the immunologist I'll have it for the rest of my life. Obviously if it calms down would be great... Also stated that I shouldn't be limiting any foods, as it's not an actual allergy.....I don't know. It's such a frustrating thing to have... Hoping it will go away somehow, not involving suppressing my immune system. That's all. Hope you have a better outcome with yours!

[Alice70 in reply to Zetp]

HI Zept ,just seen this last post you wrote ,I have looked on line to see if any new treatment for urticaria ,I saw something about a new injection they are that has been trailed name of ligelizumab, I can't make head or tail of when it will be passed if it does get passed for urticaria ,have you heard or read about it ,omalizumab doesn't work for

[Bmco]

Hi! I know I am several months late to this but you honestly couldn’t have written something more like my symptoms. I was wondering several months on if you have found anything to help?

I was put on levothyroxin 2 months ago roughly as my TSH was 10.3. Within 3 weeks I was intensely itching in different areas of my body all day long. I ended up seeing a private dermatologist a couple of weeks ago and am on fexofenadine twice a day - she thinks the change in thyroid levels combined with a tummy bug triggered the histamine response and that I need to be on the fexo for six months.

Unfortunately I’m the last couple of days even fexofenadine is only taking the edge off. It’s so bloody awful.

I’ve had awful IBS symptoms too. Samples came back fine and extensive blood work only really shows the thyroid as being an issue (I have Gilbert’s too so that usually shows up). Taking bio kult for a week has eased some of the IBS stuff but it’s still not great.

I’m due my next set of bloods soon to see what’s happening with the TSH. Keep hoping I will wake up one day and not itch!

Thanks in advance, x

[Alice70 in reply to Bmco]

Hi Bmco ,I wish I could tell you that I had found something that helps ,but I haven't, some people do well on the injection omalizumab, I think it only can be prescribed by a consultant ,I am one of the 20%that it doesn't work for ,I have taken levothyroxine for over thirty years ,my tsh and t4 are in the right place but I have extremely high thyriod antibodies (hashimo)spelling I think this is the corse of my urticaria (hives)wich I have had 10 years,hope you get more help with this condition, best