Day 22 on thyroid medication. Over the long thanksgiving weekend, I only got a few "half hives" - the best way I can describe them. As described before, they are reddish blotches, very small in size, but never fully form as wheals. I am very happy about the progress so far. I am still having underlying, low-level anxiety because based on history, I keep dreading that the hives will fully re-appear and it's only a matter of time. But I keep trying to turn my mind back to being/staying hopeful. Next week I have to get my thyroid function tests to make sure that I'm not going "hyper-thyroid", but I am not having any of those symptoms thus far.
Also in the past week, actually it's been 10 days now, I have had none of the red "flushing" / blotching rash after showering.
I hope all of this continues, and I'll keep the updates coming!
My story in understanding and living with my chronic idiopathic urticaria (CIU), otherwise known as random hives of an unknown underlying cause. I am a woman in her early 40s, also diagnosed with Hashimoto's (an autoimmune disease that affects thyroid), Endometriosis, Hay Fever (seasonal allergies), and Anxiety. My chronic hives began on June 2, 2012 following a highly stressful 9 month period in my life. This blog follows my quest for answers and relief.
Tuesday, November 27, 2012
Tuesday, November 20, 2012
Thyroid medication continues, no hives...
So I am day 15 now on the thyroid hormone. In the past week, I've had a couple more occasions where reddish circles form, maybe one or two small ones per day, but never truly become wheals. But for the past 5 days, I have been completely hive free -- not even those reddish circles. I do still get the rashing/flushing now and then. I am getting heartburn and gas pains really bad too, every other day. I went back to eating my regular diet, except for gluten, the same time that I started the thyroid medication. I contacted my dr. about the heartburn, and she said it is not a reported side effect of this drug -- but that the best way to find out is to go off of the drug for a week, and if the issue resolves, it's the drug and if not, it's something else i.e. diet. I am going to wait until after the Thanksgiving holiday weekend to try going off of the thyroid medication. If I remain hive-free through this stressful weekend, then I know they thyroid medication is helping and the question becomes what to do about this new issue of heartburn and gas. :( argh!! Here I am with that whack-a-mole game again.
I got my hair colored over the past weekend, and not a hive to be found this time. I also asked the hairdresser to use lukewarm vs. hot water on me, thinking maybe that will help, since heat seems to often be a trigger for the rashing and sometimes the hives too. But not even a rash this time either, so that was very nice!
I did find this very useful write-up on Wikipedia about Cholinergic Urticaria -- which creates that rashing/flushing and hives with increased body temperature, the part that jumped out at me is that this often co-exists with people who have CIU:
http://en.wikipedia.org/wiki/Cholinergic_urticaria
We have a long car ride for the Thanksgiving trip. Some other sufferers of chronic urticaria say that long car rides, bike rides, etc. due to the vibrations can cause a hives outbreak. Gosh, I hope that won't happen.
Next time I post, the trip will be over and we'll see how things are going with the hives, heartburn, and medication!
Happy Thanksgiving...
I got my hair colored over the past weekend, and not a hive to be found this time. I also asked the hairdresser to use lukewarm vs. hot water on me, thinking maybe that will help, since heat seems to often be a trigger for the rashing and sometimes the hives too. But not even a rash this time either, so that was very nice!
I did find this very useful write-up on Wikipedia about Cholinergic Urticaria -- which creates that rashing/flushing and hives with increased body temperature, the part that jumped out at me is that this often co-exists with people who have CIU:
http://en.wikipedia.org/wiki/Cholinergic_urticaria
We have a long car ride for the Thanksgiving trip. Some other sufferers of chronic urticaria say that long car rides, bike rides, etc. due to the vibrations can cause a hives outbreak. Gosh, I hope that won't happen.
Next time I post, the trip will be over and we'll see how things are going with the hives, heartburn, and medication!
Happy Thanksgiving...
Monday, November 12, 2012
Still a few hives, but too early to tell I think
This weekend, I did get a few small hives both on Saturday and Sunday. They never became "full blown" well defined wheals with the white ring around them, but they were the beginnings of them. They all faded after only a couple of hours too. Interestingly in Friday evening, I did some exercise and worked up a sweat, but did not have any hives as a result. (On Saturday, the hives didn't set in until evening -- after spending most of the day at the park. Sunday, I did some yard/garden clean-up to remove dead plants and our veggie plants that are done from the season. So both of those days, certainly some inhaled and contact pollen exposures, though I imagine very low due to time of year.)
Today I woke up very nauseated and generally not feeling well, so I am working from home today. Not sure if it is due to the new medication, or just a little bug that I am fighting. I have a red circle/spot on my right wrist that just started less than an hour ago. It doesn't look exactly like a hive though, but has the white-ish circle around it, so who knows.
From the studies that I read where patients found resolution from hives through Thyroid medication, a few things were consistent:
I also need to get my hair colored again this coming weekend. Last time I did that, I ended up with a big hives outbreak. Then later next week, we travel for the Thanksgiving holiday. So lots of triggers coming up. It will be interesting to see what happens!!
Today I woke up very nauseated and generally not feeling well, so I am working from home today. Not sure if it is due to the new medication, or just a little bug that I am fighting. I have a red circle/spot on my right wrist that just started less than an hour ago. It doesn't look exactly like a hive though, but has the white-ish circle around it, so who knows.
From the studies that I read where patients found resolution from hives through Thyroid medication, a few things were consistent:
- They started off with small doses
- Some had to increase dose to get resolution
- Most found near-complete resolution in less than 4 weeks once they got to the right dose
I also need to get my hair colored again this coming weekend. Last time I did that, I ended up with a big hives outbreak. Then later next week, we travel for the Thanksgiving holiday. So lots of triggers coming up. It will be interesting to see what happens!!
Wednesday, November 7, 2012
Thyroid hormone treatment for hives - Experiment has begun!
Yesterday morning, I started the daily prescription of a low-dose thyroid medication, for a trial period to see how it goes. No side effects noticed, thankfully. The endocrinologist wants me to get all my thyroid panel re-tested in a month and see me in two months, to review how I am doing and feeling and to make sure first and foremost that the med doesn't make me go hyperthyroid. My PCP "signed off" on the decision too (I contacted her first to get her opinion).
I have decided to also stop the antihistamine, so that I can truly monitor the impact on the hives without having that as a variable.
No hives since this past Saturday, and no more of that heat rashing I had a few times on Sunday. But it is early days -- these meds usually take a few weeks before any effect can be registered. And I have gone sometimes a whole week without a single hive. Rare, but it's happened a few times.
I continue to be back to eating my normal diet except as stated prior, I will remain gluten-free for the foreseeable future. I think it's good practice since I have been diagnosed with the autoimmune disease Hashimoto's.
Fingers crossed!!
I have decided to also stop the antihistamine, so that I can truly monitor the impact on the hives without having that as a variable.
No hives since this past Saturday, and no more of that heat rashing I had a few times on Sunday. But it is early days -- these meds usually take a few weeks before any effect can be registered. And I have gone sometimes a whole week without a single hive. Rare, but it's happened a few times.
I continue to be back to eating my normal diet except as stated prior, I will remain gluten-free for the foreseeable future. I think it's good practice since I have been diagnosed with the autoimmune disease Hashimoto's.
Fingers crossed!!
Monday, November 5, 2012
Maybe I should add dentist visit to list of chronic hives exploration
I was reading this morning about a number of people who had chronic hives clear up after a visit to the dentist cleared up tooth abcesses or other dental issues. I guess the explanation is that there is an infection in the tooth area, root, whatever. I haven't been to see a dentist in 3 years! (shame on me) I don't have any tooth issues that I am aware of. No tooth pain, no headaches, etc. And none of my bloodwork suggests an infection. But perhaps if some of these other options don't work out, I can explore that one.
I think I have decided to go the route of trying the thyroid hormone therapy. Last night, I ended up with another rash on my chest that got very itchy -- not hives, but very much like a heat rash. All I was doing was reading in bed, and not sweating or too hot at all!
I will continue to provide updates on how things go. Going to call the endocrinologist office here soon.
I think I have decided to go the route of trying the thyroid hormone therapy. Last night, I ended up with another rash on my chest that got very itchy -- not hives, but very much like a heat rash. All I was doing was reading in bed, and not sweating or too hot at all!
I will continue to provide updates on how things go. Going to call the endocrinologist office here soon.
Sunday, November 4, 2012
A great resource of medical articles about chronic hives
Last night when doing some more research online, I searched for "chronic urticaria pathology" and came across the Journal of Allergy and Clinical Immunology's website. They have a bunch of medical papers in an online database, and if you search for "chronic urticaria", there are hundreds of things available. I sorted by most recent data, and found a few that were very compelling:
Obviously, anybody reading my blog and any of these articles that I link to should discuss things with their doctor and make decisions based on their doctor's recommendations, not mine. But I do want to share resources that I stumble across and find to be valuable.
I also read the side of my allegra bottle this morning, just out of boredom, and noticed that they say not to take allegra with fruit juice because it can decrease effectiveness by up to 33-39%!!! Yikes!! My allergist and the dermatologists, neither of them told me that! And since I take it in the morning, I often take it with juice. DUH!! So maybe knowing that, it will become more effective for me.
So I think my game plan now is going to be the following:
One thing that I can't seem to find though are any medical articles about the duration of treatment before the hives go into remission -- other than that first article that I linked to above, sounds like for those thyroid patients, remission is directly tied to maintaining their dosages at a certain level (i.e. no cure in their case).
- One on a small test of patients with autoimmune thyroid indicators and urticaria, and treatment results with thyroid hormone: http://www.jacionline.org/article/S0091-6749(12)00855-X/fulltext
- Another from a doctor writing "what the first 10,000 patients with chronic urticaria have taught me" where he goes over different "myths" about causes and treatments. He dispels myths that chronic hives are caused by stress or by food additives, and with skepticism that H. Pylori causes hives. He also goes on to say at the very end that he feels there is not enough sound data yet about treating hives with thyroid hormone for those with thyroid antibodies, but this article was published a few years before many recent ones on that topic. But he does give some nice guidelines for treatment with antihistamines: http://www.jacionline.org/article/S0091-6749(08)01927-1/fulltext
Obviously, anybody reading my blog and any of these articles that I link to should discuss things with their doctor and make decisions based on their doctor's recommendations, not mine. But I do want to share resources that I stumble across and find to be valuable.
I also read the side of my allegra bottle this morning, just out of boredom, and noticed that they say not to take allegra with fruit juice because it can decrease effectiveness by up to 33-39%!!! Yikes!! My allergist and the dermatologists, neither of them told me that! And since I take it in the morning, I often take it with juice. DUH!! So maybe knowing that, it will become more effective for me.
So I think my game plan now is going to be the following:
- Go back to the allegra daily, and on days where needed, I'll do 2x/day.
- If that doesn't help after a few weeks, I will switch to try zyrtec, because some are saying it may be more effective (though it may cause drowsiness, so I may need to switch to taking it at night).
- If that still doesn't help, then I think it's on to try the thyroid hormone therapy as a trial.
One thing that I can't seem to find though are any medical articles about the duration of treatment before the hives go into remission -- other than that first article that I linked to above, sounds like for those thyroid patients, remission is directly tied to maintaining their dosages at a certain level (i.e. no cure in their case).
Saturday, November 3, 2012
Diet Shmiet, the Hives Return Anyway
As they did before after two weeks off the antihistamine, the chronic hives remission is over: they came back in more numbers this morning, which was day 13 of no allegra. I had the pressure hives all along my panty line again, where the elastic presses in. Yesterday, I had a hive on my neck in the morning, and later two on my right hand.
So it seems that the diet changes of eliminating those foods listed for me by the naturopath's person was not helping. After popping my antihistamine this morning, I have since enjoyed some rice, potatoes, spicy pulled chicken, and a gluten-free scone. If I'm going to have hives anyway, may as well enjoy my food. I will continue to stay gluten-free for awhile longer though.
At this point, I am nearly out of options to pursue. I still have a few things in my back pocket if I want to push for them or want to try them, but they come with their own risks:
Working on acceptance is going to be hard for me. I am amazed that medical science doesn't not understand the pathology behind chronic idiopathic urticaria; without knowing that, there is really no great way to know how to treat it.
If anyone else out there has any other ideas or pursuits to try, I would love to hear them!
So it seems that the diet changes of eliminating those foods listed for me by the naturopath's person was not helping. After popping my antihistamine this morning, I have since enjoyed some rice, potatoes, spicy pulled chicken, and a gluten-free scone. If I'm going to have hives anyway, may as well enjoy my food. I will continue to stay gluten-free for awhile longer though.
At this point, I am nearly out of options to pursue. I still have a few things in my back pocket if I want to push for them or want to try them, but they come with their own risks:
- Try the thyroid synthetic hormone, though with that, comes a host of other possible other issues that might emerge if I don't really need the hormones at this stage, since my Hashimoto's has been sub-clinical.
- Ask the rheumatologist that I saw what this other medication was that he was going to suggest. (He had wanted me to try gluten-free for a few months first.)
- See about getting a gallbladder scan, since I did read about a few cases where poorly functioning gallbladders have been to blame due to release of more toxins into the body. But I don't seem to have any other symptoms that would suggest a gallbladder issue.
Working on acceptance is going to be hard for me. I am amazed that medical science doesn't not understand the pathology behind chronic idiopathic urticaria; without knowing that, there is really no great way to know how to treat it.
If anyone else out there has any other ideas or pursuits to try, I would love to hear them!
Thursday, November 1, 2012
Only Two Tiny Hives in 2.5 Week, Antihistamine Free for 12 Days
I'm not counting my chickens yet, but I like how this has been going. The only problem is that Insomnia has kicked in, I think because of the diet change or the stress/anxiety about the diet change. I am slowly going to work my way back to my normal diet (but I think I will probably stay gluten free for a long time), and continue to monitor how it goes. If the hives return, then I know it is somehow connected to diet and not connected to seasonal allergies.
Why do I bring up seasonal allergies again?
Looking on weather.com, I see that weed pollen count is now "low" for my region, with tree and grass pollens each at "none." Interestingly, in September and through mid October, weed pollen was "high" and then tapered to "moderate" (now to low). That is when my round 2 of hives outbreak cropped back up again. Coincidence?
However, inhaling pollen doesn't seem to cause hives and that is what my allergists told me too. Only coming in to contact with it. But my perspective is, something is going haywire in my body that is causing hives -- my body is reading something as needing an allergic response. So in the absence of any other viable explanation, I figure anything might be possible!
Regardless -- I am thrilled that the hives have diminished to one tiny only every couple of days. A far cry from where it was in the middle of summer. Now, if only I could sleep!!
Why do I bring up seasonal allergies again?
Looking on weather.com, I see that weed pollen count is now "low" for my region, with tree and grass pollens each at "none." Interestingly, in September and through mid October, weed pollen was "high" and then tapered to "moderate" (now to low). That is when my round 2 of hives outbreak cropped back up again. Coincidence?
However, inhaling pollen doesn't seem to cause hives and that is what my allergists told me too. Only coming in to contact with it. But my perspective is, something is going haywire in my body that is causing hives -- my body is reading something as needing an allergic response. So in the absence of any other viable explanation, I figure anything might be possible!
Regardless -- I am thrilled that the hives have diminished to one tiny only every couple of days. A far cry from where it was in the middle of summer. Now, if only I could sleep!!
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