Hashimoto and Chronic Urticaria (hives)

[kdcdcd2]

In 1994 I was diagnosed with Hashimotos Thyroidits...then I was told that the Hashimotos turned into Hypothyroid...now for the last 9 months I have been diagnosed with Chronic Urticaria or hives. I will wake up with hives head to toe and am miserable but then by midafternoon the hives go away and come back around 8pm. I have seen a Dermatologist who says I need to accept the fact that I will not know what is causing the hives and to treat the hives (allegra and zantac) I have seen the Allergist who wants to check for an autoimmune disease which I don't understand because Hashimotos is an autoimmune disease or problem I thought. My thyroid doctor says there is no link between the thyroid and the hives and has taken a leave of abscence from his practice. I am now very frustrated and feel like I have to settle with no answers. Does anyone else have these issues?? or does anyone have any thoughts about this??

[mlr3475080]

I do! Your doctor like mine, is an idiot. There is definately a link! Your autoimmune disease means your body is attacking itself. Something else has happened. Listen to your body. Get an ultrasound of your thyroid!

[Cynnieb4]

I definately agree, was doing research on that yesterday. Before being placed on thyrod medication I noticed as I was becoming normal, or somewhat that I have severe allergies now. My dad claims its the cats. Well, it might be. But it also states that when your out of balance it will cause these problems. . MY sister on the other hand refuses to go get checked, even tho she has a goiter and chronic hives. Claims she doesn't have any symptoms although she to has put on a tremendous amount of weight in the last few years. Hashimotos unfortunately runs in my family, and once you have that you are unfortanately at risk for many others. suggestions, have you been checked for celiacs? By the way she is on zyrtec for hers. She gets them from head to toe if she doesn't take them

[Rainydeb]

Hmmm...I broke out in hives recently. Doc said "you're allergic to something." Geez, think so??? I have Hashimotos. Thyroid looks like "swiss cheese" sayeth the Endo. Any way, I don't know if the hives are related, I just hope it never comes back. It was extremely miserable, and the steroids did nothing that I could tell. Itching was severe, and different than just an itch, hard to explain but the itch felt like it was under my skin where I couldn't get to it, and skin burned. Also, I started losing my voice. The only thing that helped was an oatmeal bath, believe it or not, which I finally tried out of desperation. It was almost instant relief. Try it. Can't hurt.

Yeah, most doctors seem to be idiots in my experience. If you listen to them, they will make you feel like you are an attention seeking nutcase.

[mlr3475080]

I used to take Zyrtec..put me to sleep, but the itching under the skin thing, most likey sweeling. I blow up like a balloon, gets in my lungs,,, ya its awesome lol, welcome

[Hashimama]

Do NOT let them tell you that there is no connection between Hashi and hives....print some of the hundreds of comments from all of us out there with severe chronic hives!!!  I had severe hives, angiodemia, anaphalaxis, and tons of hair loss in 2002.  When they finally found out that is wasn't an allergy, but low TSH, I was put on Synthroid.  The hives went about 75% away.  Then I went to an immunologist who put me on Singulair and Zyrtec.  Then they went away.  Now here I am in 2009 and they are back.  Currently I am on Singulair, Zyrtec, Levothyroxine (of course), Hydroxyzine, Prednisone, and about 6-8 Benadryls a day.  Still they come back......   I am seeing an endo at UCLA in a few weeks and I am praying he can help me.  My poor kids are tired of me being TIRED!  Hang in there, you are not alone!

[Harriet55]

I'm a 54 year old woman who has been diagnosed with hypothyroidism and has had chronic urticaria for almost 3 years now.  I've been to several general practioners, an allergy doctor, skin specialist, immunologist, and gyno...and no one seems to know what's going on or care to do testing to find out.  I've been on Levothryoxine, benodryl, zyrtec, xysal, prednisone, Zantac, Atarax, etc...and I still have the hives just about every day from head (angiodemia) to toe.  I have a hard time sleeping because I wake up in the middle of the night itching.  I'm afraid to go to sleep for fear I will wake up with them. After reading this site...I'm going to try Synthroid instead of Levothryoxine and see if that helps at all.  

Just a little history that might help: About 24 years ago when my youngest child (of 2) was 4...5 years old I developed hives for about a year...but they weren't as severe as they are now.  Whenever I had a sinus infection or other bacterial infection and was on antibiotics...the hives would disappear.  I went to many allergy specialists at that time but none of the doctors wanted to give hormone tests, as I wasn't diagnosed with hypo until about 5 years ago.  The hives just disappeared and didn't reappear for 24 years.

It's a little comforting to know that there are other people like me...I haven't encountered anyone with this disease in my life.

Does anyone have sleeping problems and what do you do for it?

Are there any itching remedies?

Thank you for listening.

[jcorky]

Hmm I'm 61 year ood female, who was diagnosed with hashimoto thyroiditis. i was placed on synthroid 25mcg for 3 months the50mcg  then 100 mcg  and now 150mcg,with i n 3 months after being on synthroid  150 mcg , i developed a bad case if hives.like everyone else they come and go  some thimes they're so big it will take up my whole arm.been on attaract,dolopin tagament an xytal , predisone,  and a medrol dose pack,nothing work, my dr,gave me a topical cream there is four creams mix together. thy cream works fast, but unfortunately they came  back, the cream is clobetasol cr/ 60 gm eucerin 60 gm  menthol  1.5 gm / prudoxin  cm  30 gm..stoped the itch  and it dont make you tired..i hope this help some,

[sweetnsassie74]

Hello. I posted on the websire in July. I have done alot of research and went to my doctor. I have been diagnosed with Hashimoto's and have had hives pretty bad since Febuary. One of the this I had found while researching the relation between hives and Hashimoto's was a trial study. I tried and and have not had any hives. What a difference in my life with out them. I was miserable.
Medications like benadryl or atarax are labled a H1 histamine blockers. Meds like zantac, pepcid or tagament are H2 histamin blockers. I take 25 mg of atarax in the am along with a pepcid. In the pm, I take another pepcid. Coincidence or not since I have been doing this combination my hives have gone away. Just thought I would share this.

[jgleas]

I have had hives off and on for 5 years.  Some lab work was JUST done and it shows that I have some high anti thyroid antibodies.  So now I am being diagnosed with Hashimotos.  I am amazed at the other people who are going thru the same thing I would love to chat and exchange storys with any one of you that is willing.  Thanks!

[Vanilabnicecream]

It's so great to read everyone's comments and know that I am not alone. I was diagnosed with hypothyroidism in May of 2009, just a few months ago, and put on a low dose of synthroid to treat it. Then in late June, I started developing hives around my sides and mid-section. Then over the past three weeks, they have covered my entire body head to toe. They are all over my face and everything. They are itchy and annoying, and I'm now experiencing some swelling on my legs as well. My thyroid doctor hasn't suggested anything for them.
I saw an allergist a week ago and she put me on allegra in the day time and zyrtec at night, and I'm also on a nose spray called Veramyst. The hives have never gone away completely save for the three days I was on a steroid. Today they are as worse as ever. I just want them to go away forever. And I don't know how to make that happen....

[jgleas]

I know.  It is SO hard.  I have them head to toe as well.  everyday 24 hours a day the allegra never gets mine to go away either,  I am on steroids again right now but like you said it only works temporary and my doctor wants me to take them daily but everyone knows that isnt healthy but at the same time its the only thing that works,  I am going to see a rheumatologist in october which i have to drive almost 4 hours to see.  Maybe that will proove to be healthful I have no idea,  DO you have your lab work info?

[kaytor]

I have had hives almost every day of my life for 11 years.  The first time for 3 1/2 years then a 7 year respite, and continuing now for 8 years.  The only way I have survived without ramming my car into a pole (too afraid I would survive and not be able to scratch my hives), has been with Zyrtec.  I also have Hashi.  The only thyroid I can take is Naturethroid.  I have a scale of 1 - 10.  I am usually at about a 2 every morn when I wake up and they clear by about 9 a.m.. There have been some 10's!  When I tried Synthroid they immediately went to a 5 or 6.  The first bout with the hives I went on the Candida diet and they eventually went away.  Didn't know if that is what it was because every expert seems to think that they mysteriously just go away.  I have recently discovered that I cannot tolerate gluten, and since I have stopped my stomach feels better and my hives continue at about a 1 - 2.  My next approach will be to try to heal my adrenals.  It is a slow process but I am hoping something will help.  

[itchinginLA]

hi, I too, suffer from daily hives(8years) and was diagnosed with hashimotos disease 3 years ago. I had a partial thyroidectomy but since my surgery my bloodtest show my thyroid levels within normal range, therefore my physicians will not prescribe synthroid. I am extremely tired and can fall asleep at most anytime during the day. I am very involved in my community and  chair numerous special events. I work in marketing/pr which requires a great deal of energy,  but the daily hives and extreme tiredness are beginning to wear me out. IF anyone has any suggestions, I will  greatly appreciative. I take daily H1  and H2 antihistamines. Its good to know that I am not crazy. I just wish we could all find the answers to our health conditions. Best of luck to everyone

[stargazer1]

Hives are truly horrible. I have them to various degrees. Somedays I feel normal, other days eyes and lips are swollen, feet feel like Im walking on knots. Im so tired, even I get tired of being tired. I take antihistimines and they make me so dry (eyes and mouth) and yet the hives are still there. I was wondering about those of you with Hashimotos are you getting the hives form the disease itself or from the meds to treat the disease?
Well, my allergist just put me on METHOTREXATE and folic acid. Im scared to take because its used for chemo patients, and has a lot of potential side effects. But, on the other hand living daily with hives has its side effects too. Let me know if anyone out there has had any success with this.

[tiredofbeingtired67]

Speaking of Tired of being Tired.... I was diagnosed with Hashimoto about '87, took Synthroid for years, tired all the time, depressed, hair loss, eyesight got worse - all the regular symptoms. At some point a dr. changed me to Levothyroid, seemed about the same but more tired, no periods, no libido, no fun :(. Then was switched to Levothyroxine... now this is when I think the Eczema as it's called for me started. I itched like crazy mostly on the shins however, it would move around, disappear and reappear. Over the last 7 years the Eczema is worse, and other symptoms seem to be getting worse. After reading each post on here I realized my Thyroid is probably out of wack and I need a good Endo. I live in Colorado - let me know if you have a recommendation.
For the Eczema:
Tried clobestral (spelling?) and Eucerin - Wasted a year on that!!!
Tried Fluocinonide .05% ointment & wet socks & Steriod shots in the shins every 3 months-worked some-wasted another year on that!!!
Currently am using Desoximetasone .25% cream & Steroid shots in the shins every 3 months-Eczema is calmed so far (but I just had my Steriod shots in my shins before Christmas so I'm sure this won't last)
Steroid shots work wonders but steroids are not a cure all.
I also take a med (like benadryl) at nite, which helps me sleep and I'm suppose to take the Zyrtec each day.
With the current treatment - so far so good.  
Thanks for all your info and look forward to any feedback or further help.
God Bless~

[Brenda458]

I was kind of hoping to find a study on how to treat HIVES related to either levothyroxine, in all it's forms, and/or related to Hasimoto's.  It seems most of us have Hashimoto's, and hives, simultaneously.  Most of us are told we just have to live with it.  We are told there is nothing that can be done about it.  Why is that?  Is all the research completed then?  Are all the studies conclusive?  Because I cannot find anything related to the different brands of thyroid medicine, in comparison.  And I have been told that levothyroxine drugs do NOT cause hives...yet I get the exact same reaction on every single one they try me on, whether it has additives, and my hives lessen considerably after one day off of the meds.  I would like to see comparisons between no drugs, levothyroxine brands, and natural thyroid brands.  Then maybe I wouldn't feel like I'm going nuts, here!  Are all the medical students/fellows researching something else?  This is a serious, sometimes debilitating disorder we have.  Any doctor who has actually experienced long bouts of urticaria should certainly understand.  I guess most of them have not.  I, for one, am really ticked off at being brushed aside, like a child who is complaining too much about a tummy ache. When my lips swell, and I am coated in red bumps, I am unable to live my life.  OF COURSE we feel depressed and angry over this.  Isn't there someone out there doing real research on how to stop this horrible reaction?  Every time I start a new levothyroxine, on the third day, my hives reoccur.  Fourth...swelling in my lip starts.  Fifth, I have a fat lip and I feel miserable.  I have asked to try Armour or Naturethroid, but my doc doesn't support that change.  It makes you want to give up.  It takes over your life.  Who knows if natural thyroid would be better or not, anyway, I guess.  No wonder they say folks with Thyroid disorder are often depressed or emotionally unstable.  I'd like to see them deal with Hives every day, sometimes, twice a day.  I feel sorry for everyone who has this...especially those who have it worse than me.  I hate worrying about swelling up and not being able to breathe, one day.  We deserve better than to be told we just have to live with it.  By now, there should have been more definitive studies done on urticaria, whatever it is or is not related to.  I don't know what we can do to make the Endo community realize that this is as destructive to the total person as the autoimmunity is to the rest of our bodies.  ARGH.

[Smilerdeb]

PREDNISOLONE.

A course of that ...weaned off slowly will stop the Hives.
I found my FT3 had plummetted and once the T4 med was increased, the hives went but I am still slowly weaning off the Predisolone.
I have had no antihistamines for over 2 weeks now.
Take a look at my pics.

[JKenton]

I've had hives once in my life more than 20 years ago, and I don't think it was auto-immune. Now eczema, I've had repeatedly and I do think it's auto-immune. On rare occasionI do get this rash where I'm like bleeding under the skin on the underside of my chin and bottom of the lobes of my ears. No idea what that's from.

Some people get hives due to temperature changes, or something in the air.

[Smilerdeb]

Mine was determined after many tests and allergy testing and found to be Hypo (my FT3 had plummetted) and after raising the T4 by 12.5mcg weekly, they havent returned.
BUT Australia is absolutely FREEZING this winter.......the coldest winter I have known in years so could be a combination of both.
I'm keeping my fingers crossed lol

[wendy96]

Wow so many people with Thyroid problems/ Hives! I have been on Levothyroxine for about 10 years now. About 5 years ago, i would randomly have my eye swell up. Sometimes one eye sometimes both. It only happend every few months up until about 5 months ago. Now i get hives everywhere and every day. They seem to be really bad at night for some reason. My whole entire face swelled up 3 days ago for the first time. I've gone to the doctors and they want me to take about 8 different blood tests. However, if it comes out to be Hashimotos as so many of you guys have, it's not curable. I currently take a generic clariton in the morning and at night. Some days are good and some days the hives hit with a vengience.

[kellyj1986]

Im in the same boat. Ive been told everything from "it'll go away when you start having kids" to "you have cancer" to "you're allergic to prescription drugs" to "its stress, its all in your head".  Ive done everything from seeing numerous doctors in emerge, allergists, dermatologists, you name it... no one seems to know why, nor how to figure out how to fix it.  Ive been dealing with this for 8 years and it seems to come in spurts. I wish there was a "Dr. House" around here who could solve our cases.  My hives get so bad that my welts get welts.  Because of this i also have a reaction they call angioedema, where my eyes and lips swell up in minutes.  It takes days for this to go away.  They've put me on prednisone (IV), which is a steroid to apparently help them go away... doesnt work, just takes your mind off the pain....  I dont know what advice to give you.  Polysporn itch lotion really helps numb the skin.  Other then that, benedryl, etc....  
You mentioned that you thought it was related to thyroid issues, which I find fascinating because I have thyroid (hyper and hypo) disorders in my family genes so the doctors monitor my blood every 6 months, but of course havent found anything........
good luck with everything i hope everyone here who suffers from this finds a cure!!

[lifeasana]

Ok, I have some theories:

I also have had an incredibly itchy rash that has come and gone and I have Hashimotos.  I go to school for Chinese medicine and am surrounded by naturopaths on a regular basis.  It seems that most people have experienced a rash after going on meds.  I don't however think the meds are what causes the rash directly.  If TPO antibody (thyroid peroxidase) or any other thyroid antibody causes a histimine reaction then whenever the TPOa is stimulated a rash will occur.

This is stimulated for different reasons with different people.  For example most Hashi's people cannot tolerate gluten and it will stimulate an antibody response.  I have heard of milk (casein) also doing this.  Post partum hormones can stimulate thyroid antibody. AND, thyroid hormones will also do this.  I theorize that if you do not have enough thyroid hormone in your system then the antibody response will occur.  This explains why so many people get hives when starting their thyroid hormones- if you take enough it is possible to override the thyroid and provide most to all of your thyroid hormones outside of your body, and not trigger your thyroid to produce more and hence trigger more antibody.

I take armour thyroid which apparently just changed formulations.  I was covered in this horrible rash and going crazy not finding much help from the MD or ND sides when I read on Stop the thyroid madness:

http://www.stopthethyroidmadness.com/2010/04/25/how-to-make-reformulated-armour-and-naturethroid-work/

that many people are chewing their Armour up and feeling better.  I started this a couple weeks ago and since day one my skin has cleared and I am just itchy sometimes but no horrible poison ivy like bumps.

Please don't chew up synthroid/levo as these are different, but Armour/ naturethroid can make a huge difference!!!

[kimmie8770]

I went on Methotrexate about 2 yrs ago for chronic hives while weaning off Prednisone 30mg daily (which was causing horrible side effects) and the hives did go away for about a year. Stopped the Methotrexate after about 10 months or so (didn't notice any bad side effects) and a few months later the hives were back. Eventually had to go back on Prednisone 10mg as needed for the hives. My lips also swell pretty bad. It comes out of nowhere! I have been dealing with chronic hives off and on for about 22 years. I have also been diagnosed with Hashimtos. I take Levothyroxine, Zyrtec, Zantac, Prednisone as needed, and Xanax to help me cope.  Hang in there! I know all too well how hard it is to live with this problem. I would probably say that I am depressed due to having the hives for so long and not ever knowing from one day to the next how I will feel or look, not to mention the side effects from the Prednisone, but I think about other people that deal with much more horrible illnesses like cancer and AIDS, and if they can deal with those kind of diseases I can get through this, GOD willing! Hope this helps :)

[Rhondan]

I just opened a group on face book. Hasimoto and cronic urticaria( hives). If you would like to join please send a request. The more we all know, the better off we'll be.