Auto Immune Disease - Hashimoto's & Chronic Hives

[hives]

In October of 2005, i started with Angiodema of the face as well as chronic hives.  (I have Hashimoto's as well.) This lasted until June of 2006.  I doctored all that time, being put on steroids, allergy meds, and cyclosporine.

Now, the hives are back.  They started again the week before Christmas.  I take my allergy meds every day and they help minimally--I have an appt. to see my immunologist/allergist this month.  My endocrinologist says there is nothing she can do for me.  I know that the immunologist will want to put me on steroids for a brief period, but my experience with that is once the meds wear off, the hives come back even worse than what they were to start with.

Isn't there any other form of treatment that can be tried??  Or should I see some other specialist??

[ItchyfromOhio63]

I have had hives for 6 months today. Mmmm boy Happy Anniversary. Not one to celebrate. Mine is hives and I seem to be losing more hair than usual. They have poked and proded. Not checked hormones. Will look back at thyroid and meds I am on. The color and shape changed a while ago. I am also reaching menapause and have read about that. My doctors are great and I love them but... even checked with a bone marrow test for cancer. Oh what fun, not. I don't know if any of you still post, but would love to talk with you. I am going to look, search and figure this out.

[mmr38]

I had hives for around a year, mostly nocturnal but then getting worse, mostly on my body trunk and thighs, but also around jawline (docs always say that indicates hormones).  My doctor finally hit on Allegra 180.  I had to completely suppress the hives, taking it every day for almost a year, Zyrtec, Ranitidine, etc. didn't help. Benadryl did, but only after symptoms were already present and took long time to work. Also caused drowsiness.  With Allegra, after a couple of days, the hives did not START-- were suppressed and stayed that way.  I tested going off it after 6 months, got lighter hives case, went back on for another six months.  Tested again and it was over.

[lizzy5ny]

I had severe hives for over a year (Feb 2009-Feb 2010) and am now completely hive-free.

I tested negative for allergies to anything and had extremely high levels of anti-thyroid antibodies, but normal thyroid output. Tested negative for celiac's disease, and am an otherwise extremely healthy 23 yo female.

I tried every anti-histamine on the market, prednisone, and zyflo. The hives kept getting worse and the immunologist, gp, endocrinologist and gastroenterologist all told me they could do nothing for me.

I found several medical journal articles through google searches and message boards that referenced two small studies that gave patients like me (severe hives, no medication had any effect, anti-thyroid antibodies) 100 mcg of Synthroid, and for those that didn't respond to this, 200 mcg of Synthoid.

For me, 100 mcg of Synthroid mildly affected the hives. I begged my gp to let me try to increase the dose to 200, just to see if it helped. We started by increasing the dose to 150mcg, and within two days my hives were completely gone.

None of the doctors and specialists I have been to (I live in Manhattan) have been able to explain this, but I've been hive-free for almost three months and I feel as if I have my life back. I weaned off the prednisone a few weeks ago and I feel infinitely better.

As a side note, I have become slightly hyperthyroid as as result of the over-replacement of thyroid hormone, but have not had any side effects. Obviously, this is better than suffering from hives, and in the long term my doctors hope to decrease the Synthroid dose slightly.

I hope this helps someone. I know how terrible and life-changing (for the worse) hives can be, especially how frustrating it is to be told that no one can help you. This is corny, but advocate for yourself- the doctors won't do it for you.

[hive_surviver]

It sounds like you may have Hashimotos disease, a form of hypothroidism that is an autoimmune disease, where your body attacks your own thyroid. Did your endo doc diagnose you with this? You didn't say. Hair loss is one of the symptoms of hypothroidism, but it should stop after about 6-8 weeks of being on the right dose of synthroid. By the way, synthroid only replaces the T4 thyroid hormone- it's possible you may need the T3 hormone added to get your symptoms under control. ( T3 and T4 is what's in Armour thyroid that someone else mentioned, and there are other drugs that contain T3). As for the hives- I've had the same problem since my thyroid condition started at age 12 (I'm 45 now). Many medical and pharmacology books out there will tell you that in people with allergies or autoimmune thyroid disease, hives can be the first symptom of the thyroid disease. I have learned over the years that every time I get hives, I need to get my thyroid levels checked, because invariably I need my medication increased. Sometimes my lab values are slow to show the change, too- they'll be normal, and I'll have hives, but in the next month or two, my lab values will show my levels are low, and I'll need my medicine increased. A good endocrinologist will treat based on your symptoms in hashimotos, any way, rather than lab values, because lab values are known to be not always accurate in hashimotos. Hashimotos causes thyroid levels to fluctuate a lot over time, too- if this is what you have, you will eventually need total thyroid hormone replacement with a higher dose of synthroid or other medicine, because the thyroid evntually stops producing hormone all together with this disease.  Levels can fluctuate a lot with this type of thyroid disease- it varies person to person, but I need my bloodwork checked every 4 weeks to 3 months., and my medicine adjusted accordingly. This is not the same as some other forms of thyroid disease, where you can go just once a year for bloodwork. Since your antibodies were high, this may very well be the type of thyroid disease you have, as high antibodies are one of the ways they diagnose this. By the way- Singular is another drug that has been known to work wonders for controlling the symptoms of hives til you get the thyroid under control. I speak from experience here- Singular can be used in combination with Zyrtec and ranitidine and it sure beats being on prednisone or other steroids if it works for you. Personally, Claritin works better on the hive control for me than zyrtec, but everyone's body is different. Are you also taking Benadryl at night? Sometimes one dose at night of 75 mg Benadryl can knock the hives out for me and I don't need any of the other drugs- Benadryl has become my personal drug of choice for first line defense against hives- just don't take it when you have to drive anywhere! 5o mg doesn't work for most people for hives- most people need 75 mg, but check with your allergy/immunology doc, and if you don't have one of these docs, get one so they can coordinate with your endocrinologist. Coordination of allergy/immunology and endocrine docs can save you a lot of grief down the road. Good luck to you! I hope some of this helps.

[ChristyR]

I too have had chronic hives for almost 6 years. I have been to Dermatologists, Allergists, Endocrinologists.  Only one of the Allergist would even consider my hives being caused by my hashimotos.  I also have anti-IgG to my Ig E (which the allergist ordered-she is wonderful-Midwest Allergy-Columbus OH).  The only partial break from my daily hives was when  I was pregnant 4 years ago.  I could actually go about 36 hours without my Zyrtec.  I have been prescribed about every H1 and H2 blocker out there.  Zyrtec helps best so that is what I stick with.  I have to add Singular some days.  My intial TPO was over  700 (tested by Mayo Med Lab-I am a lab tech myself)  My latest result was 220.  I am in the process of seeing a new endocrinologist and ENT (Referral from my PA I am currently going to. He has been much more helpful and concerned than the other family doctors I have been to.)  He wants me to seriously consider a thyroidectomy due to my thyroid symptoms that I can not keep under control.  I flip back and forth from hyper to hypo thyroid symptoms frequently while on synthroid. I start and stop my synthroid according to my symptoms.  (I know this cannot be good).  I have 2 new thyroid nodules that the endo can feel, so I am hoping to get rid of my thyroid and see if this helps my hives and all my other symptoms.

[Sassy9192]

My husband has the same thing and has had some relief with Levothyroxine.  He was hive free for over 18 months and then his body became used to the dosage and the are coming back.  WE are hoping that the new increase in Levo will knock them out again.  It takes several weeks (3-5) to see the results of the meds.  Wishing you all the luck.  This is a horrible ailment.

[Mary from Reno]

I had absolutely huge hives all over my body.  My lst try was with a dermatologist--he knew zip!  I was out of his league. Next, I went to an allergist, and he determined that I had Hashimoto's, prescribed steroids and weekly shots.  At this juncture, I believed that I needed another opinion, so I called my internist, and she didn't even make an appointment with me but referred me an endocrinologist.  I was already on syntroid, which contains T4 only.  The endocrinologist changed my thyroid meds to Armour thyroid, which contains T4 and T3.  Armour Thyroid is from pigs (a mammal), is a product of the Armour Meat Company, and includes all the components of the human thyroid gland.  In less than a week, all the horrible hives (which were the size of $.50 pieces) were gone!  Armour thyroid is very inexpensive, and it worked like a modern-day miracle for me.  I don't know what I would have done if those hives had continued.  They were everywhere on my body:  face, lips, eye lids, trunk, legs.  I don't know why doctors don't prescribe Armour thyroid.  In addition to my hives, I no longer ache all over. It works so much better than Synthroid, which for me, didn't work at all.

[laura1977]

hey itchy mess, can you explain what your hives look like as I am trying to find someone who has the same thing as I.

[Itchy mess]

I, too, started with the angioedema on my face, then the chronic hives started. This has been going on for four months.  Blood test showed normal thyroid function, but very high antibodies.  (Also have had dermatographism for 9 years - treated with Zyrtec.)  Now I'm on a combo of Zyrtec 10 mg. twice daily along with Ranitidine 300 mg. at night.  Controls angioedema, but hives are daily.  Endo. put me on 50 mcg. to see if it does anything for the hives down the road.  I'm hoping for some relief.  Could the high thyroid antibodies really be causing my hives?  I'm also suffering from hair loss the past two weeks -- even before going on the Synthroid.

[BRODY79]

Are you taking synthroid?  If so how long, has it corresponed with your hives?  Sometimes the dye in synthroid can cause an allergic reaction in some people.

[PlateletGal]

I would consider scheduling an appointment with a Naturopath who has experience with homeopathic remedies. Some of the results I've seen from homeopathic remedies are amazing.

If the hives itch, you may want to try baking powder and seeing if that helps with the itching.

Good luck !