I will just start at the beginning. About 4 months ago, I woke up covered in hives and have not had one hive free day since then. I have also had several episodes of angioedema that are not controlled by anything. After several doctors, prednisone, antihistamines,etc., I was about to give up. Through the internet I learned that my hives could be autoimmune related and began to realize that I had many symptoms of an autoimmune disorder. I went to my GP and literally had to beg him to draw blood to see if I had an autoimmune problem. He told me that he had never heard of hives being related to an autoimmune disease. He begrudgingly took my blood and found out that my thyroid antibodies were very elevated and that the ANA test was positive. So, he sent me to a rheumy who basically said, "Well, you don't have lupus." Okay, I thought, so what's with the hives? Long story short, FINALLY found a doctor who said I had Hashimoto's disease. I have been taking 100 mcg (?) of levothroid for 2 weeks now with no improvement in my hives. I guess my problem at this point is that antihistamines really aren't doing a good job (I have tried Allegra, Zyrtec, Benadryl, Singulair, Zantac, Claritin and many different combos of them all.....all to no avail). I am getting so depressed and I was hoping that someone out there understands my pain and frustration and may be able to help me cope until we get this figured out. My family (both immediate and extended) have been fantastic, but I really don't know how to deal with this anymore. Being itchy, swollen, and miserable 24 hours a day for 4 months is really taking an emotional toll on me. I sincerely hope there is someone out there who can relate. I really hate to be a baby about this, but I really want my life back. Any help you can give me would be greatly appreciated.
I had a friend go through something similar. I don't believe she ever got any answers, but eventually the hives did go away. I remember talking to her about it extensively and trying to figure it out. In her case, it seemed the hives corresponded with a switch in her birth control pills. However, he doctors felt that absolutely was not the cause. She, too, took all the pills you listed, however she refused the prednisone based on a previous bad experience. (FYI - prednisone is contradicted in people with hypothyroidism).
I remember her telling me she would take a bath with gentle soap, then put powder all over her body, then lay under her fan in her bedroom just praying the hives would go away. I dug out some steroid creams I had for my psoriasis and she said they did help a bit. She also convinced a doctor to prescribe her xanax, which gave her relief from the itchiness so she could sleep at night. At the time, she was also under an EXTREME amount of stress. She ultimately changed her diet, her job and began a rigorous exercise routine. Plus, she went off birth control entirely. Somewhere in there the hives disappeared and have not returned.
I know I'm not offering any answers, but I thought I'd share the experience of my friend. Hopefully you can glean a new bit of information from her story. Feel free to PM me if you have anymore specific questions I could ask her or anything.
Your TPO antibodies are causing the hives. Supplementing with thyroid hormones should eventually put them to bay, but it could take a long time. You should try to reduce the titer of antibodies by taking a selenium supplement every day, up to 200 mcgs. Larger vitamin stores/departments carry it. If you take a multi-vitamin, check it for content and take it into account in the 200 mcgs/day total. Selenium has been shown to decrease TPO titers up to 40%.
It always amazes me what doctors don't know. An allergist might have more knowledge about the TPO/hives connection, but there isn't much more to be done about it even if he/she does know. Trying the selenium and waiting for the antibodies to leave is your best bet.
Thank you so much for your input! I have been taking Selenium for about 3 weeks, but it encourages me to know that it is just going to take time. I also did not know that prednisone contraindicates hypo. That is something no one else has told me. I really appreciate both of your input.
Hi Emory,
Just wanted to tell you something that worked for me when I had hives very badly years ago, my allergist had me take Tagamet and Clariten together said they helped each other synergistic I think. Also Atarax helped a lot but it makes you very drowsy but I have little tolerance for meds so my allergist prescribed liquid which I could titrate to the dose that was good for me. As a side note, several years ago I had angioedema and found out my TPO antibodies were like 1,000 and then I was eventually diagnosed with Hashi's, more with the help of all the good people on this board then my internist, I finally got help from my rheumy. My TSH had shot up from 2 to 69 in three months. But now I am on a maintenance dose of synthroid and doing well. I also have RA and it was all part of the autoimmune picture. Good luck!
Donna70
Hi Emory,
I have been reading this board forever, but actually joined today because of your post. I suffer from urticaria (chronic hives), am hypo, plus a million other things it seems. But, I was just recently diagnosed with chronic hives by my allergist. She also did allergy testing on my back and found out I am allergic to everything! The hives can be brought on by stress, environmental allergens, food allergens, or numerous other factors. Before my testing was completed, I had to be off all meds for 48 hours. The day of my appt., the Doctor was shocked at my appearance and my behavior. There was not one spot on my body that was not swollen and I was scratching like a mad man! She put me on steroids for a week and they did help tremendously. We also discovered that I am allergic to milk - a milk allergy causes major skin issues and stomach issues as well (for me, anyway). I read that you had tried several allergy med combos, but I thought I would share my latest cocktail with you just in case. I am now taking 180 mg of Allegra in the morning and Zyrtec before bed w/ a Benadryl. I did find that generic Zyrtec did not work for me, so I have to take the brand name. Maybe this is an issue for you as well?? Also, I am not to bathe with any type of soap product and must avoid hot bathes. I use Johnson's 100% Soap Free Baby Wash and have also switched to a perfume/dye free detergent. I am a million times better now! I hope this works for you - I understand your frustration. By the way, my endo says hives are linked to my hypo and are often seen in people with autoimmune disorders. Also, you can test negative for lupus for years and still have it. My mom has lupus and it took ten years to get a diagnosis! Thankfully, she has a Doctor that believed her symptoms and never gave up. This is the same Doctor that diagnosed me as hypothyroid at 17 years old. All other Doctors said I was just a lazy moody teen. They didn't care about my symptoms, because I presented as a 110 pound 5'6 healthy female. It is amazing what a Doctor who cares can do for someone. Good luck!
Hi Emory
There is absolutely a proven correlation between hypothyroidism and uticaria. There is a great article from NIH on office based management of uticaria that talks about this.
About 4 summers ago like you, I woke up with some wheels that multiplied. Within 3 days, I was covered in hives, had a fever and was miserable. My internist didn't pay much attention to it, so after suffering for a week or two with no relief, I went to an allergist who immediately asked me if I was hypothyroid. The treatment plan from his perspective was to calm the hives down - leaving steriods as a last resort, as all they do is suppress the hives. He had me on a combo of Claritin, Zantac, which is an H2 blocker, same function as an antihisthamine, along with atarax for the itching and lastly he added in Doxepin, only taken at night; this is an old trycyclic antidepressant with an extremely high antihisthamine-like property. Well, after all the suffering, the hives immediately got better. Granted because they were thyroid-related, it took over 2 mos for everything to go back to normal. I do recommend an allergist with an open mind. Good luck to you and feel better soon.
Hi Emory, I had hives for a whole EIGHT months last year. Even though my thyroid levels where in the normal range some of the time, my body needed them lower. Ended up having my medication increased. The doctor told me it would take one month to take effect & it did!! One month later (on new years eve) my hives disappeared & seven months later I am still hive free!! So hang in there & I am sure they will disappear soon!
I understand exactly how you feel. Hives are so frustrating, painful, itchy & do take an emotional toll. The best thing is finding out what is causing them & I think you have now got it sussed.. so just think.. only two weeks to go!! Yippee!
I have read many of these kinds of boards trying to figure why I have hives that just won't go away and are not an allergic reaction to anything. I am an over 40 adult and never had any related issues. I visited many docs and then got recommended to see one that had just left John Hopkins and was a researcher in this field. It is a total misbelieve that all hive are related allergies. Some like me / we have an autoimmune anomaly. This particular doc got me off Prednisone and we tried ZyFlow. Apparently ZyFlow works for many but it didn't for me so he moved me the Cyclosporine. Cyclosporine is normally used on patients with transplants to chill down the auto immune system. This drug, in very very light doses, can help people with long term Hives. I was totally impressed that it worked and with zero side effects! I am now living a very normal life even though once and a while I can feel that it's still there lingering. Apparently these hives not relating to allergies can come and stay with you for 1 or 2 years or more. Like 95% cases last less then two years with rare instances it can go longer.
I am no doctor so don’t just jump on this but like everyone else here I am stunned that I had to go to 4 docs before one of them new of this specialist and recommended me. This may not work for you but ask your doc if he is up to speed on the new thinking and research. Ask your doc to look into it and these alternate drugs. Again not a cure but dam I had no life fighting blistering hives every day.
I hope this helps and pass the word. BTW, in the 40's the common thinking was people who got hives for no reason had psychological problems LOL. This myth was broken and now so is the myth that "All" hives are due to allergies!
I too had hives only mine were for two years. After several months of trying everything including Prednisone I was able to keep them at bay with taking one Zyrtec at night. During that time I was all over the internet and thought it might be Candida related so basically went on a sugar free diet. That seemed to help because whenever I would consume sugar items ie candy bars, pastries, etc. I would break out in hives the next day. I knew I had hives even when they didn't show as I had that non mistakenly prickly pins and needles feeling 24 x 7. I had antibodies against my thyroid when they tested me early on but the thyroid Dr. told me everyone had them and to go home. Well, two years into the hives I was having blood work done and they found my TSH to be 26 by the time I was retested it was 52. I was put on 100 of Levoxyl immediately and told I had hashimotos an autoimmune disorder. My hives disappeared after several weeks of being on the Levoxyl. Well, 10 years later I started with the hives again (now I'm on 88 of the Levoxyl) I've had them for almost two weeks now and boy do I remember the two years I carried them. I'm going to go back to the Thyroid Dr. soon as I think they'll find I need to be back on the 100 again. I'm currently taking Moducare which is an immune system balancer from the health food store since mine is overactive. I'm also taking quercetin (have been for years) and Candestroy again as I've been consuming lots of sweets in the past few months. I also have been using a zyrtec in the am and at night a zyrtec and zantac this combo seems to be working better then anything I've tried I add Benadryl as needed....still feel those maddening prickly sensations and still had the swolen lip this morning but better every day.
Hang in there I've been there. Immune systems are funny things there is a lot of research out there for ways of keeping it in check. Just like with any immune system problem it comes and goes and you hope its not overactive more than balanced. I read about the moducare supplement and it made sense to me. Am I better now then I was over a week ago, absolutely, but not sure which of the supplements is calming it down.
Thank you so much for replying. But I don't have any thyroid left as far as I know. As soon as it was discovered, I was given radioactive iodine to destroy the entire thing. Was lucky enough to get an appointment at Barnes Jewish Hospital in St. Louis for June 15th. It's a three hour drive but worth it to get some answers. The hives and swelling make me feel so sick all the time and I get hard lumps on the bottom of my feet which make it difficult to walk at times. We're active people, so this is very upsetting so say the least. My right knee is swollen today and my left foot so I'm alternating when I'm standing. Our children and grandchildren from Chicago are arriving tomorrow for nine days and I'm praying I can get through the visit. Then we have two trips planned for summer and one for Fall. I hope someone can fix me! Thanks again and I hope you get some relief from your situation as well.
Thank you so much for your information. I am so frustrated when I keep seeing how puffy my face is, the whole body as one.. I feel like the pills berry dough person that feels tired and hurts all over. Having hives all day long is just the insult to injury that pushes the symptoms to continue on. My husband listen to me read your message of support and he said I should have surgery and have it all taken out. I couldn't agree more. I will take all the knowledge of someone who has been there and done that. Thank you again, hopeful always
Hang in there. Will let you know what the Immunologist at Barnes has to say. I imagine it will require more than one visit. If it turns out to be unrelated to anything else, I guess I will have to live with the hives. I just hope he can give me some kind of medication to relieve them. It kind of goes in cycles. I had them last Jan-April then didn't get them again until this Jan & Feb. They went away for two months and hit me hard May and now. I'm all scratched and bloody from the itching and bruised from scratching at them. Sure can't put a swimsuit on this summer! Oh well. It's probably better for everyone if I don't! LOL
The thing that angers me the most is that 25 years ago when I was so sick and continued to tell the doctors that something was wrong, they just wanted to give me anti-depressants. That is until our daughter got sick while in college. A doctor of Osteopathy in the little town where we lived at the time finally tested her after I pestered him forever about it. He ended up diagnosing both of us and sending us on to a specialist. Doctors seem to think women are all a bunch of mental cases.
If you can take Advil or ibuprophen, I have found that it helps with the swelling because it is an anti-inflammatory. Ask your doctor if you can take it. If you just need to vent, e-mail me. We will be in and out this summer but have access to e-mail wherever we go. I know it helps to talk to someone who understands. I'm here for ya! Will let you know how the doctor appointment goes.
PS: I read a lot! It helps me take my mind to other places out of the "misery zone".
Just a thought- radioactive iodine only gets rid of some of the thyroid. The doctors will tell you that it destroys it all but that is not true and in some people, if a significant portion is left, it can grow larger. Even surgery cannot eliminate it all, but surgery is better than radioactive iodine because it can be mostly removed. The key component to everything is getting it all out, as much as possible, and then proceeding with synthroid therapy- suppressing the TSH to a low normal or slightly below normal. Basically you have to have surgery to get it all out and then suppress the thyroid with a slightly below normal TSH. Because radioactive iodine does not do the job effectively, you can have problems for years after it. Suppression is a must or you will always have problems.
Thanks so much for the information. I just assumed the radioactive iodine got rid of the entire thyroid. Right now I feel that my doctors are totally inept. I guess when they said the iodine killed my thyroid, it just means that it stopped functioning but is still there. My sister also has this problem and they only removed part of her thyroid years ago. Now she has thyroid cancer and they had to go in and remove the rest of it. She and I are "hypo" and my daughter is "hyper" and she hasn't experienced any of the problems my sister and I have been having and I hope she never does.
I have an appointment with an Immunologist Tuesday and hopefully he will give me some answers. Thanks again for responding.
Maybe have your daughter's antibodies tested as well? I ran hyper for years until it just gave out and then went to hypo. Hyper and hypo are just the effects of the main problem of the thyroiditis. At least she can keep an eye on it, I had my daughter checked and she is very young, without symptoms as well. Most immunologists will suggest cyclosporine. After much research, I discovered that that can give you cancer, and you really shouldn't be on it unless you are about to die. That is why I went the surgery route. What the immunologists don't see is the DIRECT connection between the chronic urticaria antibody and the TPO antibodies. Thus the thyroid disease actually causes the hives, if they are the autoimmune structure- I don't remember if it is IgG or IgE receptors, but one is autoimmune and one is allergic. The autoimmune receptor (you can google it) means your body is responding to dead thyroid tissue. In your case, synthroid suppression may take care of it or you might have to go in and remove the rest of it and then do suppression. If you have a normal TSH you will have problems. Most immunologists do not recognize this connection and you should know that before you see them. I saw 4 that could not (or rather, were not willing) to help my situation, i.e. actually correcting the source of the problem, and not just putting band-aids on it. You have to fix the problem at the source, not just get rid of swelling and hives. Good luck and believe in gut feelings, what others (not doctors) are telling you. Ultimately, they want to make money and can only do so if you stay sick.
My doc says that thyroid problems can be hereditary. Interestingly, it looks like my Dad's side of the family probably had it- you can see the big dark circles under all their eyes, which I always thought was just a hereditary physical trait that I inherited. Except when I began my thyroid treatment, the big puffy dark circles under my eyes went away. Once I got to thinking about it, I wonder how many people in my family suffered from thyroid problems without ever even knowing what was wrong?
I am sorry about your sister's cancer. I worry too but doing a lot of praying. I don't know if you pray but it sure is a big comfort to me. I always keep in mind that God is always with me and He never for sakes me. I don't want you to think of great here is a Bible thumper but God may not be able to keep stuff from happening to us but He is there for us more so through our most difficult times. I have to go in for blood work today and appointment to marrow because for some reason I have limp nodes popping up and some are hard and lots of swelling a long with head aches too. I ask my doctor if it is related to my thyroid and he said no. I am confused and don't know what to think. I hope you don't mind but I would like to pray for you and your family and hope you get the best care you can get.
Sincerely,
hopeful always
Good Morning,
Hope you are having a better day. I just wanted to let you know about what happened to me Tuesday when I visited the Immunologist in St. Louis at Barnes West Jewish Hospital. After having seen four different doctors here in Springfield, all of them telling me that my hives and angioedema were NOT thyroid related, the wonderful doctor at Barnes confirmed my self-diagnosis. This is all related to my Graves (thyroid) Disease. He spoke to me for over 30 minutes then told me what he will do so that I will NEVER have hives again. He said it could take up to six months of treatment, but then I would never be troubled again with this. He sent me to the lab for extensive blood work so he can charge the progress of the medications.
Basically, I am on six different medications and am required to see him once a month and to get blood work everytime I visit so he can check my progress and make sure the medications are not affecting anything else negatively. After only two days of taking the medications, I woke up hive free this morning. It's like a miracle.
The only advice I can give anyone with thyroid disease is this. If you have hives and allergies and everything else has been ruled out as to their cause, it could quite possibility be caused by your thyroid problem. You have to be persistent with your doctors. The four doctors I saw here in town could have, at any point, said, "I don't know what's causing this, so I'm going to refer you to an Immunologist." They were so arrogant, they couldn't admit to not knowing the cause, told me it was emotional and sent me home. I felt totally validated and vindicated and victorious when my suspicions were confirmed by the Immunologist. I asked him to please send a letter to each of the doctors here in our town telling them of his findings. Yesterday, I called my Primary Care Doctor's office, spoke to his nurse and told her how angry I was because of the way I was treated by him and the other doctors. They caused me a money, time, and 18 months of misery and stress.
So, Hopeful, please never take NO for an answer. Keep searching for a cure for your problem. Do some research online about your symptoms, ask to see a specialist. Your prayers are certainly thoughtful and appreciated. But I look at things differently. I think the Almighty gave us brains and intelligence to figure out some problems on our own, and gave doctors the knowledge and skills to help us solve them. I'm concerned about the things that are happening to you and want you to NEVER give up, NOT EVER! There are so many thyroid variables, everyone is different, so no individual experiencing these problems can give you the answer. You are a unique individual and just need to find the right doctor, who will give you the right answers and the correct treatment.
Please keep me up to date on how you are doing. I would like to know how you are progressing in your search for a cure. And sometimes, it just helps to chat with someone else about what's going on. You are in my heart and in my thoughts that you will find the answer you need to make you healthy and well.
An allergist might have more knowledge about the TPO/hives connection, but there isn't much more to be done about it even if he/she does know. Trying the selenium and waiting for the antibodies to leave is your best bet.
