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Chronic hives and angioedema after thryoid surgery for over 6 months now
I have a RT lobe thyroidectomy 8/28/06 and was admitted back into the hospital 10 days later for 4 days, with a severe allergic reaction. I take Levothyroxin 125mcg daily and my last thyroid test showed my T4 were not converting to T3, so I also now take Cytomel 25mcg 2x a day to give the levels my doctor said is normal range. I still have chronic hives and angioedema severely 24/7. This has caused severe bronical spasms, causing asthma now. My doctor sent me to a Dermatologist and they couldn't figure it out, so now my GP is sending me to an Asthma & Allergy Center. I have never had anything like this in my life and I still believe the thyroidectomy caused my on going chronic hives and angioedema. I am so frustrated living like this 24/7; I have taken prednisone and other prescribed drugs to help me survive each day. I get this reaction so bad, that I have to go to ER and from swelling and unable to breath. I now have to carry an Epipen it is so bad. I have never in my life had anything like this and all I can think of is that this is associated to my thyroid surgery. I am open to any ideas that can help.
i have had heat and cold induced urticaria for about two years now and was recently diagnosed with a small thyroid carcinoma and had a thyroidectomy. From previous blood tests, my ANA levels were elevated, but my thyroid levels have always been fine. Physicians need to realize that thyroid care is very individual and lobectomy or total thyroidectomy may not be the best answer for all patients.
I really empathize with your situation. Let me tell you what is going on with me, which could have nothing to do with your situation and I certainly wouldn't get really scared reading this or related things on the net until you talk to your doc. Let me start by saying that if you are being sent to a credibly Allergy and Asthma place, you are probably on the right path. I have suffered from severe angioedema most of my life- at least since I was a preteen and I am in my mid thirties now. Not Hives, I have never gotten hives unless you want to call the red bump that pops up and within 2 hours is an angioedema covering over a sq foot of my body a hive.
For the longest time, my parents simply kept me home from school because of the pain from the area that was swollen and the fact that they were often on my face giving me an appearance that resembled Quasimodo. I was sent to GPs, Dermatologist and Allergy guys who all did the typical tests, diet changes, with no success. Then, in my mid teens, they became more deadly. After one began on my lip, spread to my tongue and began moving down my throat- we went to the hospital. Finally, I was referred to Johns Hopkins' Allergy and Ashthma center...which after 3 weeks of being poked with everything allergen under the sun we found out that I wasn't allergic to anything they poked me with. That was when I was sent to see their head guy.
This was 1991, so their knowledge was not anywhere what it is today... but he put me on the antihistamine (Zyrtec) and a H-2 blocker (Zantac). (If Zyrtec makes you tired, all I can say is that after a few weeks the tiredness will wear off) This was like a miracle cure!!!! I used to get them at least once a week and then it would be 10-15 of them, all over my body lasting for several days. All of a sudden, days, weeks and sometimes months would go by before I would get them- and there was rarely more than one and that would last merely hours and never run their full course. The doctor had me track everything about me in a notebook for over a year. He determined that I fell into a group that has these triggered by stress, both physical and mental. They are now researching it as a C1 inhibitor deficiency... I am not a doctor, I don't know what it means- it is an autoimmune reaction- but I think it may be a genetic thing, no cure only RX management- your doctor can tell you more.... but he was right. If there was trauma to an area, such as a scratch- I would get one, even if a brief one. Especially if the scratch gets infected. This was especially so if I was really under a lot of stress. However, the absolutely sure-fire way for me to get them is to have an elevated white blood cell count. I notoriously get a sinus infection 2-3 times a year, the week before the infection really crests- I am popped out all over with angioedema. I have moved a lot, so sometimes I get a GP that thinks I am crazy when I say try to be proactive and get on antibiotics ahead of time when the first one pops up. However, I have been with one for a couple of years who has researched it herself as well as tracked me and, suprise, suprise, about 1 week after I pop out I need antibiotics for something or another.
That is my story, up until the last month. Along with some other various health problems, I have papillary thyroid cancer. It was determined that I had chronic thyroditis and what looked like a benign goiter, so we were supposed to have a preventative right lobectomy in Jan, but the pathology report resulted in the whole thing being removed. Now I am in the iodine/Synthroid/Cytomel purge to prepare for my ablation dose of the 131 Iodine. All of this to increase my TSH so that I will benefit from the dose. For the first time in over 10 years I look like Quasimodo again. So much so that my husband of 5 years was shocked because he had never actually seen them like this. We have been carefully watching any coughing or throat itching to make sure I don't land in the hospital again. I have been worried that I have some kind of infection that will delay my dose, but my white blood cell count is "what is to be expected"- whatever that means. So the only thing different is my TSH is getting higher and higher.
I have been doing a little research, from what I read there is a med school in the UK researching a link between TSH/hypothyroid/thyroditis and female patients presenting with autoimmune angioedemas. I am really interested in this research, because as soon as I started feeling the fatigue, cold and achiness of going off me meds, my angioedemas started popping out. I am not a doctor, a nurse or a medical professional...but I suspect that they will find that people with this C1 inhibitor problems can't tolerate TSH levels that are off, but I may be completely off base....or they may discover that is true in 10 years. I don't think it has anything really to do with my thyroid cancer, except for the fact that my blood levels aren't regular enough at this moment to fight off this autoimmune disorder- so don't get scared and think you have thyroid cancer. Anyway, you might want to talk to your Endocrinologist and your Allergy guy- and make them tell you specifically why they do not think it is a C! inhibitor or TSH condition before they dismiss it.
I am sure that by tomorrow 20 people will have logged on to comment that I don't know what i am talking about. I just wanted to share with you what I knew caused my angioedemas in the past and what I suspect is causing them now.
For the longest time, my parents simply kept me home from school because of the pain from the area that was swollen and the fact that they were often on my face giving me an appearance that resembled Quasimodo. I was sent to GPs, Dermatologist and Allergy guys who all did the typical tests, diet changes, with no success. Then, in my mid teens, they became more deadly. After one began on my lip, spread to my tongue and began moving down my throat- we went to the hospital. Finally, I was referred to Johns Hopkins' Allergy and Ashthma center...which after 3 weeks of being poked with everything allergen under the sun we found out that I wasn't allergic to anything they poked me with. That was when I was sent to see their head guy.
This was 1991, so their knowledge was not anywhere what it is today... but he put me on the antihistamine (Zyrtec) and a H-2 blocker (Zantac). (If Zyrtec makes you tired, all I can say is that after a few weeks the tiredness will wear off) This was like a miracle cure!!!! I used to get them at least once a week and then it would be 10-15 of them, all over my body lasting for several days. All of a sudden, days, weeks and sometimes months would go by before I would get them- and there was rarely more than one and that would last merely hours and never run their full course. The doctor had me track everything about me in a notebook for over a year. He determined that I fell into a group that has these triggered by stress, both physical and mental. They are now researching it as a C1 inhibitor deficiency... I am not a doctor, I don't know what it means- it is an autoimmune reaction- but I think it may be a genetic thing, no cure only RX management- your doctor can tell you more.... but he was right. If there was trauma to an area, such as a scratch- I would get one, even if a brief one. Especially if the scratch gets infected. This was especially so if I was really under a lot of stress. However, the absolutely sure-fire way for me to get them is to have an elevated white blood cell count. I notoriously get a sinus infection 2-3 times a year, the week before the infection really crests- I am popped out all over with angioedema. I have moved a lot, so sometimes I get a GP that thinks I am crazy when I say try to be proactive and get on antibiotics ahead of time when the first one pops up. However, I have been with one for a couple of years who has researched it herself as well as tracked me and, suprise, suprise, about 1 week after I pop out I need antibiotics for something or another.
That is my story, up until the last month. Along with some other various health problems, I have papillary thyroid cancer. It was determined that I had chronic thyroditis and what looked like a benign goiter, so we were supposed to have a preventative right lobectomy in Jan, but the pathology report resulted in the whole thing being removed. Now I am in the iodine/Synthroid/Cytomel purge to prepare for my ablation dose of the 131 Iodine. All of this to increase my TSH so that I will benefit from the dose. For the first time in over 10 years I look like Quasimodo again. So much so that my husband of 5 years was shocked because he had never actually seen them like this. We have been carefully watching any coughing or throat itching to make sure I don't land in the hospital again. I have been worried that I have some kind of infection that will delay my dose, but my white blood cell count is "what is to be expected"- whatever that means. So the only thing different is my TSH is getting higher and higher.
I have been doing a little research, from what I read there is a med school in the UK researching a link between TSH/hypothyroid/thyroditis and female patients presenting with autoimmune angioedemas. I am really interested in this research, because as soon as I started feeling the fatigue, cold and achiness of going off me meds, my angioedemas started popping out. I am not a doctor, a nurse or a medical professional...but I suspect that they will find that people with this C1 inhibitor problems can't tolerate TSH levels that are off, but I may be completely off base....or they may discover that is true in 10 years. I don't think it has anything really to do with my thyroid cancer, except for the fact that my blood levels aren't regular enough at this moment to fight off this autoimmune disorder- so don't get scared and think you have thyroid cancer. Anyway, you might want to talk to your Endocrinologist and your Allergy guy- and make them tell you specifically why they do not think it is a C! inhibitor or TSH condition before they dismiss it.
I am sure that by tomorrow 20 people will have logged on to comment that I don't know what i am talking about. I just wanted to share with you what I knew caused my angioedemas in the past and what I suspect is causing them now.
2 Comments
Many years have passed since you posted this. I am curious to know what the research found as I am currently dealing with this issue. Had before a total thyroid removal due to hyperthyroid and still have it almost 2 months later.
I am almost 2 months post TT and about 2 weeks after surgery I started getting hives and my lips and eyes will swell. One day my hand started itching and i thought i was getting a hive but my entire hand swelled. Also my feet itch top and bottom. Im on 125mcg of levothyroxine and was diagnosed with papillary thyroid cancer with follicular variant. If anyone can help me with info i would appreciate it. I was taking Benedryl but cannot function and go to work so im trying Zyrtec. My endocrinologist switched me to a white pill thinking maybe its a color allergy but I've never experienced anything like this before. I do want to add that my younger sister had episodes of hives when she was in elementary school. She eventually needed an Epi pen and also was diagnosed for awhile as having hyperthyroidism
Latex comes to mind bcz after hospital stay and readmit there is exposure to latex all over the place in a hospital. One can become anaphylactic to latex after repeated exposure and some foods are latex cross-reactive.
My 16yr old is anaphylactic to PLUMS of all things and they blood tested for latex and she is Class II (out of 6) positive to latex and also plums so we know it wasn't the preservative that had this awful reaction. She carries an Epi Pen all the time and is also severely allergic to nuts now, too with reactions.
If they do bloodwork ask them to pls. include Latex. Cannot hurt to rule it out as latex is everywhere and can cause topical reactions as well as systemic.
So sorry you are enduring this ..................btw, my daughter is asthmatic, too ... so I can really feel for you with all you are going thru. She is severe environmental allergies and pollen and all summer long is bad for her with grass, etc., HAVE THEY TRIED SINGULAIR FOR YOU ??? AND / OR ZANTAC ???
Both the those meds help block allergy triggers and are not commonly used (Zantac is not commonly used) but both can actually help perhaps and Singulair will help the asthma as well as allergies as it is now FDA approved for allergies in the US.
Cheryl (one daughter latex, plum nut allergic and other one is bee sting allergic and both carry Epi Pens)
My 16yr old is anaphylactic to PLUMS of all things and they blood tested for latex and she is Class II (out of 6) positive to latex and also plums so we know it wasn't the preservative that had this awful reaction. She carries an Epi Pen all the time and is also severely allergic to nuts now, too with reactions.
If they do bloodwork ask them to pls. include Latex. Cannot hurt to rule it out as latex is everywhere and can cause topical reactions as well as systemic.
So sorry you are enduring this ..................btw, my daughter is asthmatic, too ... so I can really feel for you with all you are going thru. She is severe environmental allergies and pollen and all summer long is bad for her with grass, etc., HAVE THEY TRIED SINGULAIR FOR YOU ??? AND / OR ZANTAC ???
Both the those meds help block allergy triggers and are not commonly used (Zantac is not commonly used) but both can actually help perhaps and Singulair will help the asthma as well as allergies as it is now FDA approved for allergies in the US.
Cheryl (one daughter latex, plum nut allergic and other one is bee sting allergic and both carry Epi Pens)
Hives can come from so many things. I had chronic hives for about two months and I do feel for you. I had two or three visits to the ER also. Most people think whats the big deal about hives but it can become serious once you start swelling with them. The doctors seemed to think it was my Blood Pressure medicine causing the hives. I still don't really know what caused it. I went to an allergist and really didn't get to far. The hives ended up clearing up with a few outbreaks here and there for about two more months. The allergy doctor will screen you on some of the obvious causes. As for an opinion yes I think the thyroid removal or medicines or stress from it all could attribute to your hives.
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