Our daughter was the first to go into anaphylaxis. It happened one day at school in May, just a few months after she had been diagnosed, and six months after our son had. The only things she did was walk down a hall and briefly pass under an air conditioning vent that was blowing. This made me watch our poor daughter like a hawk. I was petrified this would happen again, and to be completely honest, so was she. She still remembers the feeling of her throat starting to close and having a hard time breathing, she remembers how scared she was and I seriously doubt those memories will ever lighten for her. A few months later, due to symptoms our daughter had for a very long time that other doctors had dismissed, I took her to see the doctor who handles my hypothyroidism. I was not surprised to find out that our daughter was also hypothyroid.
During the years, our daughter has never had another anaphylactic reaction, but our son became worse. He skips over anaphylaxis and goes straight into shock; hopefully you aren't as surprised as I was to learn that can happen. This has happened over the past 3 years about 15 times. I figured this must just be how it was, and thanked my lucky stars that our daughter had gotten better and waited for the time our son would follow in his sister's severity footsteps. But one night at the end of this school year, I couldn't sleep and rather than have a google binge, I had a lab binge on my son. I felt there was something that I had missed, and poured over lab results trying to find something, knowing I probably wouldn't. But on lab work from 2010 I was shocked to see that they had only ran one test on a very important panel, omitting others that should have been run as well . While they "tested" our son for a thyroid problem, which is know to cause Cold Urticaria, they only ran his TSH. This really upset me, because TSH is a pituitary hormone, and does not tell you a damn thing that is happening in the thyroid itself. To get the full picture, you need to have a TSH, Free T4, Free T3 and antibodies. I REALLY want to you remember that, because with the info I found out today, it is extremely important.
Did I start seeing signs? No. I started seeing things that could easily be explained. 95 degrees outside and he is in sweats and a house coat, well maybe the air conditioning was on a little to long. Falling asleep in chairs at 12 in the afternoon, maybe he's hitting a growth spurt. Sleeping in until 10 a.m, well it's summer and he can. Freaking out over school starting in a couple of weeks, most kids do. Not wanting to leave my side to go to a friends house, some kids prefer to have their friends over at their home. But I picked up the phone and made an appointment anyway.
The doctor listened to my concerns, and my totally unfounded and non medical opinion that it was possibly due to our daughter being hypo that caused the severity and with his severity level increased so much and family history I just wanted to make sure he was o.k. She agreed, and so labs were ordered. She didn't just run a thyroid tests (again TSH, Free t4, Free t3, and antibodies. I will say this as many times as I need to so it will hopefully be ingrained in your brain!) she also ran an anemia panel, which threw me for a loop. The next few days I totally changed focus from thyroid to what did she see that would throw in anemia as a possibility and did that have something to do with his severity level? Then I got a phone call from the office. "Your labs, and your daughters labs are perfect, but we need to see your son again." They only do this when labs are off, so I ran to the computer, pulled up his results and right there in black and white, TSH is flagged as high, free t4 normal but almost to low, free t3 normal but almost to high, positive for antibodies but within normal limits. Everything else, in my non medically educated opinion looked fine. We will be getting the official ruling this Wednesday.
So this lead to a google binge. I just wanted to know if ANY doctors world wide had ever treated Cold Urticaria with a thyroid medication. It would be the missing piece of the puzzle with something I have been wondering for 3 months and l was shocked. First I found a question and answer from a doctor on about.com. This doctor stated how he successfully treated "half a dozen" patients with Giant Urticaria and angioedema with levothyroxine, even though their thyroid labs came back normal. He also stated "It is interesting that you were given prednisone and antihistamines which I also found do not work. Prednisone is far more dangerous and has far more side effects than thyroid medication. So it does not make sense not to try thyroid in adequate does for such an awful problem. It is not well know that thyroid is safer than aspirin by far. Both aspirin and desiccated thyroid were discovered in the 1800s. So during the first 70 years of their use in medicine hundreds of children died every year from overdoses of aspirin. This was only finally stopped when pharmacies started putting child-proof caps on the bottles. During that same time children also overdosed with thyroid. There are no reported deaths from any of the acute overdoses of thyroid hormone. Only 4% of the thyroid overdoses are even admitted to hospital."
So this gave me a little info from one doctor, but I wanted to find it in a study or something that would be better accepted or hold a little more weight. That's when I found these little gems. First, a screen shot that I took from my cell. Sorry I didn't copy the link, but with the info at the bottom you should be able to look it up. It looks like it is from the American Academy Of Dermatology.
Then I found this! This is from the Washington Manual of Outpatient Internal Medicine. It starts discussing Chronic Urticaria, and how thyroid problems are most often associated with it, and then gives pretty much the same info as above stating that
"Patients may be hypo-, hyper-, or even clinically euthyroid but usually have antithyroid peroxidase autoantibodies. In these patients (including the clinically euthyroid), treatment with physiologic doses of thyroid hormone often leads to resolution of the urticaria."
So while this is extremely exciting to me, it kind of pisses me off. If this information is readily available that I can find it with a quick google binge, why are patients not being offered the opportunity to try this? It really won't make a difference to our children, within the next couple of days I expect our son to be put on thyroid meds due to his labs so I will see first hand if my hunch is correct or not, but what about the other patients, especially the kids out there? The doctors put them on massive doses of antihistamines, which can cause massive tooth destruction or leave them so tired they are unable to do hardly anything, or causes mood swings or uncontrollable hunger. Then they get locked up in the house, get behind on education, get left behind by friends, get put on steroids which has some nasty side affects, (our allergist will do everything he can to avoid prednisone, and only uses it for a very short period of time when he absolutely has too), some patients try Xolair injections, which has some nasty side affects of it's own, and who knows what else, when there are studies and writings about trying a thyroid medication and it's safe! Personal note, I was on levothyroxine when I was first diagnosed, but the lady I see now has me on Armour (natural thyroid hormone, not synthetic made from dissected pig thyroid) and our daughter has always been on Armour. A lot of doctors won't prescribe it, but it has T4 just like levo and has t3 which I like. I wonder if Armour would work for this therapy as well?
Another thing I really want you to remember, besides which tests should be ordered, it is important when the tests are drawn. Your doctor or nurse may tell you that it does not matter when thyroid labs are drawn, but recent studies are showing differently. It is best to have thyroid labs drawn in the morning, preferably before 8 a.m or as close as you can while fasting. For example, coffee and smoking are just 2 things that are known to suppress TSH, which will affect your labs and can put you in the "normal" category if you are over slightly. So make up a song, read over and over, take notes, what ever you need to do to remember, TSH, Free t4, Free t3, and antibodies all before 8 a.m and fasting!
What do you think? If you were given the opportunity to try this treatment plan for you or your kids would you take it?