I can't believe it has been 2 months since I last authored a blog post here. I remain, most thankfully, hives free. I am increasingly convinced it was a medication issue.
Just a few weeks ago, I had to change to a different generic of the antidepressant that I am on. Needless to say, I was VERY nervous. Wondering if some new inactive ingredients would trigger hives again. I am pleased to report that it did not.
I did just have some of the chest flushing a few evenings last week, while I was on my "one week off" break from 3 months of continuous birth control pills. I have come to know and accept that as just a hormonal thing that is highly transient.
I hope that my blog gives some hope to those of you out there suffering currently. It may be even longer before I write again (hopefully), since there has been very little more to say.
Keep the faith!!
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.
Monday, November 4, 2013
Friday, September 6, 2013
A summary of tests I've had for hives
So thought it might be helpful to share with all of you the various tests and experiments that I went through during my bout with chronic hives last year... maybe you have had the same or get additional ideas:
Bloodwork ordered by my Primary Care Doctor and/or Endocrinologist:
Maybe this list will give you some ideas to explore with your doctor. You can see how my results really didn't point to anything, which is why I now believe that mine MAY have been medication induced. Good luck!!
Bloodwork ordered by my Primary Care Doctor and/or Endocrinologist:
- Thyroid hormone panel - detailed (TSH, free T3, free T4/calculated, T4, T3 uptake, Total T3) -- mine were all normal.
- Thyroid antibodies test (Thyroid Peroxidase & Thyroglobulin) -- I already knew I had these antibodies from a test years prior, they re-tested to confirm.
- Autoimmune panel (tested for things like double-stranded DNA, C3 & C4 complement, Sjorgen's, RA Factor, ANA screen, SED rate, and more) -- all of these were normal except ANA was positive but in a very low titer.
- Celiac - negative.
- Metabolic Panel - normal.
- Vitamin D - mine was very low, but is now in normal range thanks to supplements.
- Vitamin B12 - low-normal.
- H Pylori (bacterial test) - normal.
- IGE Serum (screen for allergies) - slightly above normal range.
- IGE Antibody - positive but in a very low titer.
- Tree & Grass Pollens - positive across the board, very high for grass.
- Tree Nuts - all bloodwork was negative, but skin scratch tests were positive for a few.
- Gluten free for 4 months (useless; did nothing other than frustrate my life)
- Paleo for 4 weeks (no change other than created sleep disturbances and fatigue)
- Eliminated added sugars for 2 months (no change)
- Eliminated tree nuts after getting positive allergy skin test results -- this will be a lifetime thing now, and I was told I need to carry an EpiPen.
Maybe this list will give you some ideas to explore with your doctor. You can see how my results really didn't point to anything, which is why I now believe that mine MAY have been medication induced. Good luck!!
9 months hives free...
I am thrilled to report that I am still indeed hives free. My heat flushing/skin botching did crop up again when I was on a break between 3 months of continuous birth control pills (I am on 3 months continuous with no placebos, then 1 week break, then start again with next 3 months). But it was only a day or two and not even the full day that the skin flushing happened. So that has definitely proven to be a hormonal thing.
Am I certain that my birth control pill last year is what was giving me hives? No. I can't be sure. Honestly, I can't. It's just my current theory, based on eliminating many other potential causes and by applying 20/20 hindsight logic. But, I'm not about to switch back to that one again either to find out!
I still have a small worry every day that the hives will return. I still glance 1-2 times a day at the "hot spots" where they clustered (wrists, neck, under arms, waistline).
From many who have commented to various posts on my blog, there seem to be common themes among us:
My belief is that all 5 of those things should be looked at thoroughly as potential causes for chronic hives, but in particular, hormones and medications.
My readers will appreciate this: I recently had a follow-up with my dermatologist about my keratosis pilaris, and I told him about how the birth control pill change solved my skin flushing, and that I had a theory that the same pill caused my hives last year.
His response?
"Could be. Medications can do all kinds of crazy things. So is that all for today then?"
Are you KIDDING ME??!! I wanted to shake him and say: "Then whey didn't you have us look at that when I was spinning with distress last year and seeing a different doctor or specialist every week seeking answers and doing tons of diet change experiments!"
We are our own advocate. All the best to those of you reading who are in an active state of chronic hives, and all the best to those of us in remission that it stays that way!
Am I certain that my birth control pill last year is what was giving me hives? No. I can't be sure. Honestly, I can't. It's just my current theory, based on eliminating many other potential causes and by applying 20/20 hindsight logic. But, I'm not about to switch back to that one again either to find out!
I still have a small worry every day that the hives will return. I still glance 1-2 times a day at the "hot spots" where they clustered (wrists, neck, under arms, waistline).
From many who have commented to various posts on my blog, there seem to be common themes among us:
- Reproductive hormone abnormalities (showing up in other symptoms such as endometriosis, infertility, etc.)
- Thyroid auto-immune conditions
- Seasonal allergies
- Taking a slew of medications -- includig those meant to try to suppress the hives
- Stress/anxiety even before the hives started
My belief is that all 5 of those things should be looked at thoroughly as potential causes for chronic hives, but in particular, hormones and medications.
My readers will appreciate this: I recently had a follow-up with my dermatologist about my keratosis pilaris, and I told him about how the birth control pill change solved my skin flushing, and that I had a theory that the same pill caused my hives last year.
His response?
"Could be. Medications can do all kinds of crazy things. So is that all for today then?"
Are you KIDDING ME??!! I wanted to shake him and say: "Then whey didn't you have us look at that when I was spinning with distress last year and seeing a different doctor or specialist every week seeking answers and doing tons of diet change experiments!"
We are our own advocate. All the best to those of you reading who are in an active state of chronic hives, and all the best to those of us in remission that it stays that way!
Monday, July 29, 2013
Update - Remission Continues, My Theories on "Why?"
I am happy to say (and knocking on wood each time I say so) that I continue to be in hives remission. I have been asked recently by a few readers about "what I did" to end them. I don't think I did anything to end them. They just seemed to fade away. As I noticed them lessening, I stopped taking antihistamines. And just continued to observe fewer and fewer until they were just gone.
Looking back now, I have 3 current theories on why I had chronic hives:
If you are currently experiencing active chronic hives, you are not alone in your angst and frustration. But just know that remission will happen at some point, that this will be transient ("this too shall pass"), and that life is constantly changing
My best advice is look at ANYTHING that may have changed in the month or two leading up to your hives. Soap? Meds? Detergents? Fabric Softener? Lotions? Vitamins? I initially was looking on what I ate or used THAT DAY that the hives appeared, not taking a step back and looking at the bigger picture.
As for me, it is nice to now go sometimes even days without scanning my body for those dreaded wheals. I can't help but wonder if it will stay like this though.
Looking back now, I have 3 current theories on why I had chronic hives:
- They were due to a birth control pill? I started a b.c pill two months before the hives set in. Now, one might think that I would have reacted right away from that, not two months later. But I look at it more as having a "toxicity buildup" effect, meaning if there was something in that drug that my body didn't like, and more of it was built up over time, that's when my body hit a certain threshold and reacted. I also had flushing/rashing/blotching while on it too. I was on that pill until March, but my hives were gone by early December, so how does that make sense? Maybe my body just finally realized it did not need to have an allergic response, much as our allergy responses change all the time. But the flushing/rashing/blotching continued even after the hives had ended, and when I changed to a new bc pill in March, that went away too. I believe that part of it was hormonal.
- They were due to an antidepressant? I started a new antidepressant for anxiety around the same time that I started the bc pill. As one usually does, I started with a lower dose, and increased it over the next 6 weeks. Maybe it was at the higher dose that my body reacted to something in the drug -- and again, it just took many, many months before my body desensitized to the allergen and stopped hiving. I dropped the dose back down in January, which was after the hives had already stopped, and am still on the lower dose today.
- They were from an unknown cause and not from the drugs, for a reason maybe never to be known? Could be that my medication theories are all wrong, and they were just a random occurrence. I have read others' blogs on this topic, and the good news is that most everyone seems to go into remission and stops blogging about it.
If you are currently experiencing active chronic hives, you are not alone in your angst and frustration. But just know that remission will happen at some point, that this will be transient ("this too shall pass"), and that life is constantly changing
My best advice is look at ANYTHING that may have changed in the month or two leading up to your hives. Soap? Meds? Detergents? Fabric Softener? Lotions? Vitamins? I initially was looking on what I ate or used THAT DAY that the hives appeared, not taking a step back and looking at the bigger picture.
As for me, it is nice to now go sometimes even days without scanning my body for those dreaded wheals. I can't help but wonder if it will stay like this though.
Friday, June 21, 2013
I guess the hives weren't seasonal
Not a hive to be found anywhere, thank goodness. So my other theory that they could have somehow been related to my seasonal allergies/hay fever is clearly unfounded. I only took Allegra for 4-5 days this month in total, my seasonal allergies actually haven't even been that bad this year.
I still get flushed easily from the heat, but not more of the prickly rash that I was getting. The new hormone (oral contraceptive) that I am on now seems to be agreeing with me much better.
So in general... not much to report! Maybe my bout with chronic hives will stay in remission for awhile. I sure do hope so.
I still get flushed easily from the heat, but not more of the prickly rash that I was getting. The new hormone (oral contraceptive) that I am on now seems to be agreeing with me much better.
So in general... not much to report! Maybe my bout with chronic hives will stay in remission for awhile. I sure do hope so.
Tuesday, June 4, 2013
Seasonal allergies have started.
This past weekend, my seasonal allergies kicked in, pretty much right on schedule. They were very bad all day and night Sunday, I think they merged with a head cold to create a perfect storm of misery.
Reluctantly, I started the Allegra back up, roughly taking 1 every 18 hours. I used the term "reluctantly," because based on one of my blog commenter's own experience, I was worried that Allegra was potentially to blame for my hives last year, and that perhaps I had never made the connection. I am pleased to say that in my case, Allegra doesn't appear to be the culprit. No hives. I don't know if Allegra has a compounding effect in the body (i.e. the longer you take it, the more that it builds up thereby creating a point in which the body reacts with an allergic response), but I did read that it's half life is approx only 14.5 hours.
I will continue to monitor and see what happens as allergy season continues.
Reluctantly, I started the Allegra back up, roughly taking 1 every 18 hours. I used the term "reluctantly," because based on one of my blog commenter's own experience, I was worried that Allegra was potentially to blame for my hives last year, and that perhaps I had never made the connection. I am pleased to say that in my case, Allegra doesn't appear to be the culprit. No hives. I don't know if Allegra has a compounding effect in the body (i.e. the longer you take it, the more that it builds up thereby creating a point in which the body reacts with an allergic response), but I did read that it's half life is approx only 14.5 hours.
I will continue to monitor and see what happens as allergy season continues.
Wednesday, May 22, 2013
6 Months Hives Free - Flushing Reduced w/Hormone Pill Change
Finally, I am close to saying thatI have been "hives free" almost as long as I had them last year. But they started in early June 2012, so I keep hoping they were just a weird health blip and they are not somehow seasonal and tied to my intense grass pollen allergy (which starts to peak in late May where I live).
The red "flushing" has been greatly reduced thanks to a change in my birth control pill. I can't believe that whole time, not one of my doctors ever thought it could be hormonal -- I had to rule out many other things (including one dermatologist telling me it was rosacea, and another telling me it was related to my allergies and hives) before it occurred to ME that the hormone pill could be the source of the issue. But if you are reading this blog, frustration with the medical community is likely to be a familiar feeling and your head is nodding.
So the flushing/blotching was definitely due to the way the hormone was released from the pill, and here's how I know this:
This illustrates beautifully how differently a person can react to even the slightest changes in medications. I don't know if I am particularly "med sensitive" or not, but it certainly reminds me that I am my own best advocate and detective!
As we enter into early June, I just keeping hoping I remain hives free.
The red "flushing" has been greatly reduced thanks to a change in my birth control pill. I can't believe that whole time, not one of my doctors ever thought it could be hormonal -- I had to rule out many other things (including one dermatologist telling me it was rosacea, and another telling me it was related to my allergies and hives) before it occurred to ME that the hormone pill could be the source of the issue. But if you are reading this blog, frustration with the medical community is likely to be a familiar feeling and your head is nodding.
So the flushing/blotching was definitely due to the way the hormone was released from the pill, and here's how I know this:
- I was on a low-dose birth control pill for 10 months and had the flushing the whole time, pretty much daily to varying degrees, except on days during my "breaks" from the pill, the placebo days.
- When I changed to a new B.C. pill after seeing my gyne about this, the first month on the new pill was significantly reduced in the flushing/blotching.
- The second month, the pharmacy substituted a different generic -- same exact hormones, but must have a different way of releasing or being absorbed by the body, because starting week 2 on this pill, my rashing and flushing was worse than EVER before!
- By week 3 of that second month, I went to the pharmacy and they put me back on the other pill I had the previous month and explained to me that it could be an issue with the absorption.
- No more rashing/flushing/blotching since then.
This illustrates beautifully how differently a person can react to even the slightest changes in medications. I don't know if I am particularly "med sensitive" or not, but it certainly reminds me that I am my own best advocate and detective!
As we enter into early June, I just keeping hoping I remain hives free.
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