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Hello, I’m here out of desperation for my husband, David.
Almost 8 months ago he started breaking out in horrible, full body hives for no apparent reason. Nothing new had been introduced to our life; he just woke up one day covered from head to toe. We started taking antihistamines, with no relief, and after a massive attack to the point that hives on his eyelids caused his eyelids to swell, we went to the ER. They then directed us to an allergist, who did a skin test and found nothing.
We were then referred to an endocrinologist, who did her own tests and discovered that his body was being flooded with a type of antibody that usually attacks the thyroid. She diagnosed him with the auto immune disease Hashimoto’s (which his mother does have), and put him on a low synthroid dose, although she said his thyroid was functioning fine. She also disagnosed him with prediabetes and put him on metformin. Neither of these helped the hives, which by this time had become a constant thing to his every moment.
After this we went to his GP, who put him on steroids. For about a week he cleared up, but then the hives came back, even with the steroids. His doctor didn’t want to give him more steroids, so she put him on a stronger dose of antihistamines that he had to take four times a day. These did nothing.
The hives got worse. One time he got so covered and his body swole so much that his lips split open and I rushed him to the ER in fear that he would die. The ER didn’t do anything but gave him more steroids.
We were then referred to a dermatologist who was willing to go the extra mile to help us. She did many bloods tests and skin tests, and found his body was being flooded with a type of antibody called neutrophils. She also mentioned that his hives were some of the worst she’s ever seen. She first tried a combo of steroids and antihistamines, but this didn’t help. She then put him on a type of medicine called methotrexate, which helped for a while, but ultimately began to not work just like the other methods of treatment. He was told by his dermatologist that methotrexate isn’t a solution and can be dangerous, so he can’t be on it longer than six months.
We were then referred to a rheumatologist due to a large C-reactive protein in his body. My husband tested negative for rheumatoid arthritis, so the rheumatologist is now testing him for the whole amount of auto immune diseases. We will get the results next week. But we are basically hitting a brick wall with this, and my husband and I are both disheartened to find that nothing seems to be working to help him.
At this point. we are desperate, looking for answers anywhere we can. This isn’t livable for my husband, not knowing whether or not he will be able to walk because hives have swollen his feet to the point that he can’t. We really need some guidance about where to look for answers from anyone who can provide them.
Replies to "Hello, I’m here out of desperation for my husband, David. Almost 8 months ago he started..."
I checked with my female friend, age 65, who has had Hashimoto's since age 12. She has had hives just a few times in her life, yet 2 years ago, out of the blue, she had a radical hive attack unlike her other milder attacks. The spots looked liked targets and covered her entire body. Her doctor termed it "erythema multiforma". He prescribed anti viral meds and told her if the hives entered her eyes or privates to go immediately to the ER, which they did not do. Like you she has found no direct connection of H. to hives, but hives are an autoimmune disease and as mentioned those of us with autoimmune disease often have multiple types.
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Your husband has Hashimoto's skin disease which is a complicated auto-immune disease. I have a girlfriend who like your husband has H. and at times has had severe skin hives, so it does seem to be tied into this disease. My previous other experience with hives is based on my sister-in-law who after eating strawberries will break out in hives within a few hours, so in her case it is a food allergy.
You are searching for answers and often those of us with autoimmune diseases have multiple diseases and this could be happening to your husband.
I have no medical experience, but been forced to educate myself about skin disease because of my own issues and so I am offering a few ideas because I do understand the misery your husband is experiencing as I have had eczema inflammation which was driving me to the point of suicide because the pain and itching didn't allow me to sleep. I was loosing my mind. I spent hours a day searching for answers and because of my diligence giving my doctors ideas when stymied I am leading a controlled but happy and productive life again.
#1- Have you checked into the 5 Day Extended Patch Test? It is given by a specially licensed dermatologist or allergist and yes this test takes 5 full days. They may not be able to administer the test if his back is broken out, as he needs a clear area of skin to test and for most it is the entire upper back. I didn't become allergic to contacts until middle age, yes it can happen overnight because our body finally gets weary of trying to protect us from toxins and yes even natural ingredients we come in contact with every day. The answers I got from this test gave me my life back.
#2- Another option is a detox diet to get his inflammation down. True my contact allergies caused my Allergic Contact Dermatitis, ACD, which is chronic but under control because of my test results which allowed me to purge the allergens from my environment, but after that I developed 2 other forms of eczema. Auto immune diseases seem to pile on. Yes all doctors want to prescribe steroids, quick results for some, yet I am allergic to 3 of the 5 classes of steroids and for one of my new forms of eczema the steroids actually fed this eczema. Also my other form did not respond to even my non-allergic steroids at all. As a last result I began a detox to lower inflammation. Candida is often the cause even though I had no common symptoms like discharge from the vagina, that's because yeast can live inside our tissues raising our histamines in our bodies. 4 months later I am amazed at the results. Food allergies or foods that breed yeast raise our bodies inflammation caused by high histamines (your husband is taking strong antihistamines trying to lower his histamine levels). This diet is simple- it is a zero carb and zero sugar diet (yes even natural as in fruit) for 2 months. This starves out the residual yeast in the body killing it. Yeast requires carbs and sugars to live and yes when it is dying out you will go though withdrawal, as the starving yeast is sending messages to the brain to be fed sugar. After 2 months of this elimination dies, I am allowed a few minimal serving of fruit a week and a few servings of carbs, but no gluten. No processed sugar for life. Surprisingly after 6 weeks I noticed a difference at the same time my sugar craving lessons. My mouth no longer watered looking at a cookie or piece of candy which others in the household were eating. I read a book which got me motivated to try this detox, yet your husband is so severe he should consider seeing an MD who specializes in food allergies or food related health issues. This diet will not harm his body and as he is desperate this is a safe consideration and it may help him. Of course check with his specialist about Hashimoto's before he tries this diet as that disease has food restrictions I believe.
Hope is keeping him going right now and it seems you have good medical care and are learning what he has and what he doesn't have and let us know his progress. Also keep searching on blogs like this as I learned a tremendous amount for fellow sufferers.