The out come to desperate for answer of itchie ... - Thyroid UK

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The out come to desperate for answer of itchie skin rash

Alice70 profile image
42 Replies

I post last week looking for a answer to years of rash and extremely ichie skin ,i wrote and said i was going to see a private dermatolagist, at the cost of 190 pounds ,i though that if my car had broken down ,and it cost this much to mend it i would pay it ,well ive seen private dermatologist this afternoon ,best 190 ive ever spent got my diagnosis after years ,ihave urticaria relating to hypothyriod ,i honestly feel as if ive won a prize just to have the diagnosis which is treatable hip hip hooray lol ,thank you to all who tried to help when i posted in desperate

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Alice70 profile image
Alice70
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42 Replies
SlowDragon profile image
SlowDragonAdministrator

Urticaria often linked to autoimmune thyroid disease (Hashimoto's)

thyroidpharmacist.com/artic...

Alice70 profile image
Alice70 in reply to SlowDragon

Thanks for this article ,yes my consultant told me i have thyriod related urticaria

madge1979 profile image
madge1979

Haha.. glad a diagnosis has made you so happy 😀.

And you’re sharing has helped others too..

apart from any meds you may have been given, Aloe Vera is a great help .

I’ve heard that some deficiencies can be to blame .. iron For example .. also a yeast infection can cause dreadful all over skin itching ..

Enjoy feeling better

Luv Mx🌹

Alice70 profile image
Alice70 in reply to madge1979

Thank you madge

McPammy profile image
McPammy

Well done for going private. Sometimes one has to financially prioritise to have a healthier life.

Glad you got a diagnosis and now you can focus on putting your skin complaint right.

Great news for you 👍

Alice70 profile image
Alice70 in reply to McPammy

Thank you pammy

Mionaonthehill profile image
Mionaonthehill

My husband has suffered for years with itchy skin due to a blood disorder. The only thing that works for him is to use petroleum jelly.

Alice70 profile image
Alice70 in reply to Mionaonthehill

As he tried antihistamin

Mionaonthehill profile image
Mionaonthehill in reply to Alice70

Thank you Alice70 yes he did and over 20 years petroleum jelly has been the only thing to help him but different people get relief in different ways. I’m glad you’ve found what is right for you.

Blethering19 profile image
Blethering19

I have urticaria, hives, with either hyperthyroidism or the Carbimazole. Taking allergy tablets helps as does E45 cream.

Alice70 profile image
Alice70 in reply to Blethering19

I have been given antihistamine, thank you bleth

barneton profile image
barneton

Pleased for you. I have had the same problem - itching for years. I suppose you can't tell me who you saw? I have also had bad treatment from a dermatologist I saw in my local hospital which has ended in my having permanent scarring on my face from a steroid cream which was prescribed.

If you can't give me the name of dermatologist here, can you tell me how you researched finding one?

Alice70 profile image
Alice70 in reply to barneton

Barneton i was refered to a dermatologist five years ago by my gp ,iwas told it was dry skin ,i new that that wasnt the cause of this itching ,but we try to except what they say, i live in north wales so i saw private dermatolagist in N wales ,if you live near ,i will give you his name , he gave me fexofenadine ( telfast ) to be taken in the morning ,atarax to be taken at night as they have a seditive effect, both are a antihistamine ,centreban cream ,and another cream called menthoderm,this is to stop the burnig sensation i get along along with the itching,none of the pharmacists were i live stock menthoderm not even the big boots ,it has to be ordered so i wont get that now untill earliest monday ,all i did to find dermatologist was i googled private dermatologist in north wales ,the clinic was called spire ,i dont no if there are anymore spire clinics in different parts of the country ,hope you get sorted

Alice70 profile image
Alice70 in reply to barneton

Barneton i also got my husband to take photos on his phone while my skin was at its worse ,i showed them to dermatolagist

Sylvia22 profile image
Sylvia22

So pleased for you. What treatment did he suggest.

Alice70 profile image
Alice70 in reply to Sylvia22

Hi sylvia ,ive wrote it all down in my reply to barneton,do please read it

I've got the same condition. Can you share who the dermatologist was?

Thank you in advance

helvella profile image
helvellaAdministratorThyroid UK in reply to

By Private Message, please.

Alice70 profile image
Alice70 in reply to

Hi myriam ,administrator ask me to reply to you in private message,i dont no how to reply private message,read my reply to barneton

in reply to Alice70

Thank you SO much .

lucylocks profile image
lucylocks

Hi

glad you have found the answer. Do you mind me asking what he prescribed for you.

I also get urticaria, mainly from the cold but also this summer from the sun.

I saw an immunologist and he gave me Fexofenadine anti histamine. He said some people who are hypo. get the hives but anyone else can get them.

Best wishes.

Alice70 profile image
Alice70 in reply to lucylocks

Yes lucy ,if i go to cold from worm or wormto cold i start itching ,also ich wear my under cloths are snug to my skin ,over the years i have changed washing powder wore cotton under wear ,cotton bedding never dreaming it was urticaria,iwas told yesterday it is thyriod related ,i have taken levothyroxine for thirty years,read my answer to barneton

lucylocks profile image
lucylocks in reply to Alice70

I have read our body thermastats are wonky in hypothyroidism, then this could be the cause of the urticaria in either cold or warmth.

My Immunologist did say some people do also get pressure hives which it sounds that you get from your snug clothes.

It is strange but when I started with the urticaria, I also started with eczema and I was given cetreban ointment for that. The eczema has improved now thankfully.

Just a thought, are you gluten free, as I have read some people can get hives because of gluten intolerance.

I keep meaning to try giving up gluten to see if it helps.

Alice70 profile image
Alice70 in reply to lucylocks

Do you no lucy ive always though i have a funny thermostat ,sometimes when i first get up in mornong i get little shivers ,dermatolagist is going to writ to my gp asking him to give me celiac glutton blood test

lucylocks profile image
lucylocks in reply to Alice70

Even if you do not have celiac disease you can be gluten intolerant. Do not though give gluten up before your test as you need to be eating it for weeks before having he test done.

I have had the test done three times and it has come back negative every time, an endo. I once saw said it is a pretty unreliable test really, so even if it comes back negative it maybe worth trying a gluten gee diet to see if it helps the urticara. It should be done for at least three months to see if there are any improvements.

Do you have Hashi's?

Alice70 profile image
Alice70 in reply to lucylocks

Hi lucy sorry i didnt answer your question about hashi,i think i have it as my thyriod went under for no reason only autoimmune, also hereditary, i was waiting to see gp ,wich i saw yesterday ,i am more confused now about this dreadful ichie urticaria ,after seeing dermatolagist last week inwitch her diagnosed urticaria related to thyriod and b12 ,my gp yesterday said it wasnt as my thyriod level is were it should be ,i have taken levothyroxine for the years,like you i take 1.25 per day in my younger days i was taking 1.50 ,i thing that amount was because i was also taking hrt ,my thyriod gave me early menopause, anyway im wondering now did dermatologist mean my urticaria was auto like the thyriod and b12 not directly related, ive been put on fenofenadine one twice aday hasnt had much effect yet ,but only been on them ten days gp said if not effective after one month he will raise them to four aday,my gp told me he tested for celiac last year results were ok,what do you take for your urticaria

SlowDragon profile image
SlowDragonAdministrator in reply to Alice70

Presumably dermatologist confirmed you have autoimmune thyroid disease also called Hashimoto's

Testing TPO and TG antibodies would be good idea, if not been done .....if either are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY 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)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

Alice70 profile image
Alice70 in reply to SlowDragon

Hi slowdragon you have posted a very interesting read , i dont no if i have hishimotos ,i have taken levothyroxine for thirty years 125 mg ,it started to fail on its own ,it must be hereditary as my mother daughter ,and two of my sisters are also hypothyriod ,i also have injection for b12 ,so does my hypo daughter ,does this mean i had hishimotos ,i found it interesting you mention how these things affect the stomach ,like bloating ,some acid ect ,stomache problems in general ,the other thing ive always thought this iching which has now been diagnosed as urticaria goes togeather with my stomache problems ,i havent had chance to read up on the sites you have posted jet but i will do . Thank you so much for being so helpful

SlowDragon profile image
SlowDragonAdministrator in reply to Alice70

About 80-90% of primary hypothyroidism is due to autoimmune thyroid disease also called Hashimoto's

Medics don't have any medical treatment specific to Hashimoto's, so they often consider it unnecessary to test. But patients need to know

There's much we can do to reduce symptoms

As you have many close relatives have hypothyroidism too, it's pretty likely that you have Hashimoto's

Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

research on Non Coeliac Gluten sensitivity and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

todaysdietitian.com/newarch...

Many clinicians report that eating a gluten-free diet may help improve thyroid function in nonceliac gluten intolerance. “Getting gluten out is primary for patients with Hashimoto’s, even without celiac disease,”

Alice70 profile image
Alice70 in reply to SlowDragon

Thank you slowdragon for this information, the dermatolagist isaw told me ,he was writing to my gp about a coeliac blood test ,iv been taking antihistamine five days now i was wondering if they would interfere with coeliac test ,should i stop them before the test ,i am disappointed that the anihistamin havent worked jet ,i dont no weather or not i should ask to been seen by a endocrinologist, especially if theses hive dont go , as the ich is driving me mad ,one day i will write on here my journey with hypothyriodism, i have plenty of years of it 30 on thyroxine ,and ten years before diagnosis, it hasnt all been bad ive had plenty of good years ,it was the years before diagnosis, i remember it well it was so awful , and ofcourse now with theses hives ,your replies to me have fascinated me as i have never before put two and two togeather ,thank you once agian ps my mother sisters were diagnosed years after me ,mother 68 eldest sister 80 younger sister 58 , if there diagnosis would have been begore me i would have had a inkling of what it was ,i spotted it in my daughter ,interesting you mention dairy ,i dont no if you have heard of the york test, i had it done some years back ,results were i had a intolerance to milk ,iwas diagnosed age 39 ,so now you can guess my age lol

SlowDragon profile image
SlowDragonAdministrator in reply to Alice70

Keep eating high levels gluten until get coeliac blood test

Then try strictly gluten free diet

Reread this link....if just gluten free doesn't help

thyroidpharmacist.com/artic...

Alice70 profile image
Alice70 in reply to SlowDragon

High slow dragon ,thanks for all the information you posted me ,i will have to reread as couldnt take it all in ,remember i said dermatologist diagnosed hives related to thyriod and b12 ,im wonderring now if he ment another auto along side those conditions ,i visited my gp friday he said my hives had nothing to do with thyriod and b12 ,because they are both been treated ,and are in the right place ,if i remember afew months ago my tsh was oo.44 on 125 mg ,my gp does not test t4 ,i feel well except for a few night sweats,and hives of course ,im confused now on weather my thyriod is causing me to have hives or not ,i believe hives are comming from the inside ,over the years i have tried changing washing powder ,wearing cotton ect ,i even did without my b12 injection for six months ,im begining to wonder if it is the levothyroxine its self that is causing hives ,as ive said i have taken thyroxine 30 years ,and i no that the ingredients have been changed over the year ,for the first 15 or so years i was on eltroxin,ifelt great ,but i believe they have changed the ingredients of that now ,gp told me he test me for celiac last year it was normal ,ibelieve he did as i remember now i had blood test when i saw him for itchies last year ,sorry for long post ,what i really wont to no is can your thyriod still caurse hives even though you are been treated with levothyroxine

SlowDragon profile image
SlowDragonAdministrator in reply to Alice70

So you need to get FULL Thyroid and vitamin testing....vast majority forced to test privately to make progress

Assuming you have autoimmune thyroid disease, (Hashimoto's) - diagnosed by high thyroid antibodies.....then vast numbers of Hashimoto's patients benefit from strictly gluten free diet

Just testing TSH is completely inadequate. Many people, especially with Hashimoto's, need suppressed TSH and/or addition of small dose of T3 alongside Levothyroxine

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)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

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 BOTH TPO and TG thyroid antibodies tested at least once .

Night sweats sweats can be low B12

Come back with new post once you get results and ranges

Alice70 profile image
Alice70 in reply to SlowDragon

Thank you so much ,i will certainly be looking into private testing

It’s well worth keeping some aloe Vera to hand. I’ve found Holland and Barrett”s is good.

Glad you’ve got a diagnosis, though a GP could have ( should have !) referred you, but I know mine wouldn’t.

purple64 profile image
purple64 in reply to

Is that a cream?

in reply to purple64

A gel.

Alice70 profile image
Alice70 in reply to

I think my gp would of refered me ,but i would had to wait months for appointment, couldn't wait any longer as it was getting worse driving me mad ,i will get some aloe vera to have on hand thank you

in reply to Alice70

I’d forgotten about the waiting times. You’re right, you could have waited months. I heard of one person ( can’t remember which specialist he was waiting for ) who was told he’d have to wait 18 months.

Hope your skin calms down soon.

Chippysue profile image
Chippysue in reply to

Why not have an aloe Vera plant? You just snap off the end of a leaf and apply the gooey stuff to skin

in reply to Chippysue

Trouble is you can’t take the plant out with you :) I have both, plant in the house and a tube of the gel in travel bag. The Aloe Vera plant is also said to be one of the best at cleaning the air in the house, so a bonus point for that, too.

Chippysue profile image
Chippysue

I don’t want to dampen your happiness to have a diagnosis but if I had seen your first posts I would have said that skin problems are within, I would have said to look at prescription drugs as they are often the cause, I would have suggested getting rid of gluten and dairy as it’s advisable to steer clear of them when you have an autoimmune disease anyway.

Doctors are trained to come up with a pharmaceutical drug or lotion to everything but what about treating the cause?

I personally don’t take anything else beside thyroid meds, and I don’t want to take those. our bodies are clever, they let us know when we are consuming, inhaling something we shouldn’t and we need to listen to our bodies.

When I look for answers I google the problem and dr Josh Axe and most of the time there are the natural remedies

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