Bad Reaction to Hydroxychloroquine and Pilocarpine

At my first appointment with rheumatology in early January, I was prescribed two medications for Sjögren's syndrome.  I was prescribed hydroxychloroquine to help with inflammation.  I was also prescribed pilocarpine to help with dry mouth. 

I tried the pilocarpine first, so that I would know if any side effects were caused by it.  I wasn't expecting anything awful to happen.  

1/10/2025: I took three pilocarpine at intervals throughout the day as directed.  They didn't help at all.

1/11/2025:  I again took three pilocarpine with no improvement in moisture level.  Rashes developed and quickly worsened on my upper left arm, stomach, chest, upper back and neck, one leg, right arm, and lower scalp.  The rash consisted of small pinpoint red bumps that itched terribly.

I quit taking the pilocarpine as soon as the rash began.

1/12/2025: I took one dose apiece of four name-brand antihistamines, scattered throughout the day.  The rash worsened.  

1/12/2025: I decided to go ahead and try the hydroxychloroquine since I figured it might calm my body down.  Hydroxychloroquine is an immune suppressant.  I took one capsule, which was half of the prescribed dose.

1/13/2025:  The itching was not as bad.  I took four doses of antihistamines and one capsule of hydroxychloroquine.

1/14/2025:  The itching improved some more.  I took five doses of antihistamines.  I took the third dose of hydroxychloroquine.

1/15/2025:  I took the fourth dose of hydroxychloroquine first thing in the morning and more antihistamines.  My rash and itching continued to improve until afternoon and then exploded again.  Between 4 PM and 5 PM that afternoon, large rashes popped up all over my stomach, chest, entire back, upper hips, upper thighs, neck, and scalp.  The edges of my face began itching, and I had intense itching over most of my body.

This rash was different from the pilopcarpine rash.  The pilocarpine rash consisted of small individual bumps scattered all over my body. The hydroxychloroquine rash consisted of large solid areas of rash that itched even worse than the pilocarpine rash.  It was awful.

I quit taking the hydroxychloroquine immediately.

I cannot overstate how horrific the hydroxychloroquine rash was.  On two different days, I came very close to going to urgent care or to the emergency room.  The itching was unbearable.  I even scratched so hard a couple times that I made myself bleed a little.  After around a week, the rash very slowly began to subside.

To be clear, I had no swelling of the throat.  It was not life-threatening, just unbearable itching.  

All told, the rash lasted for approximately one month as it gradually improved.  I had some temporary scarring that lasted a bit longer.  

As a result of this debacle, I am taking no medication for Sjӧgren's syndrome.  I don't want to be on any of the DMARDs (Disease-Modifying Antirheumatic Drugs), since they all sound dreadful.  

My main problems are dryness of the mouth and eyes.  I do not yet have any organ involvement or neuropathy. 

I have been upping my omega-3 intake to try to improve my dryness.

My First Sjӧgren's Appointment

I like to document my autoimmune journey, mainly for myself, but also because my posts could show up in search results for those seeking information.  Also and perhaps most importantly, we need to educate more people about autoimmune disease so that sufferers aren't gaslighted about their symptoms.  

This is from my November 17 post:

My struggle with dryness continues.  In my post from August 25, I wrote in regard to my summer autoimmune flare:

I feared that I had Sjögren's syndrome, which causes excessive dryness.  I have suspected Sjögren's syndrome for years, but I tested negative in the past.  Most people with Sjögren's syndrome do test negative, so that doesn't rule it out.  I plan to be tested again later this year, just in case the test shows something.

I was tested two weeks ago.  I tested positive for Anti-SSA/Ro antibodies, which are autoantibodies present in around eight different autoimmune diseases, most notably including Sjögren's syndrome.  I am being referred to rheumatology, but I know it is Sjögren's syndrome.  I have the hallmark symptoms.

My new patient appointment with the rheumatologist was on January 6.  I was very nervous about this appointment, for three reasons.  

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First, I didn't know the doctor, and I had no way of knowing whether my experience would be good or bad.  People who have autoimmune diseases quite frequently are gaslighted by their doctors and told to see a psychiatrist.  I'm not kidding.  I have read so many horror stories about treatment for both Hashimoto's (thyroid) and Sjögren's.

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Second, I did not want a lip biopsy done.  Many rheumatologists believe that having a positive blood marker just isn't enough to know if someone has Sjögren's.  This makes no sense, but it's tied to sexism (80% of sufferers are female) and lack of research into autoimmunity (also tied to sexism).  Furthermore, many doctors see complaints of dryness as being unimportant and easily solved by over-the-counter ointments and lotions.  They'd feel differently if they had horrific dryness everywhere inside and outside their body and while being allergic to most all of those products!

So, I had way of knowing if I'd be forced into a lip biopsy.  No way would I ever want one.  It involves cutting into the back of the lower lip and extracting a salivary gland for testing.  I have mouth sensitivity that flares terribly with any sort of mouth trauma.  I had a terrible time after my double-tooth extraction in 2021, and I hate to think about what a lip biopsy would do to me.  Indeed, here are some comments I pulled out of some discussion threads about lip biopsies.  Each paragraph is from a different person.

My lip has been numb, etc for almost a year. Lately it feels a bit better but will never be normal.

It took mine over two months to get feeling again. I still have some numbness.

Mine is still a little numb nearly 14 years later. Sorry.

Over a year. Sensitive to hot and cold. It's like it never healed. Doc says it takes time. Would have never had it if I had known …

My doc won't even do the lip biopsy because they can easily get the wrong spot with a false negative.

Took a good amount of time, was painful, and left my lower lip permanently damaged with numbness.

I had a lip biopsy done 2 1/2 years ago and I have nerve damage. My lip is numb a lot which can make it hard to pronounce words sometimes and I’m always spilling drinks down the front of my shirt. Lately it’s been numb constantly and it’s driving me crazy.

My Dr specifically doesn't order that test because of problems healing and permanent numbing that can happen.

Took a good amount of time, was painful, and left my lower lip permanently damaged with numbness.

My rheumatologist team said it was outdated and barbaric process

I have enough problems without having my lip cut open. 

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Third and what I felt was the most likely outcome, I fully expected to be told that my Sjögren's is too mild to treat and that we needed to wait until I get even worse.  And truly, I believe my condition is mild moving towards moderate, and I am nowhere near as dry or ill as these people in the Sjögren's online discussions are.

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At my appointment, the doctor walked in, introduced himself, sat down in a rolling chair right in front of me, and asked me for my symptoms.  I had memorized a short list of the key things that I knew that I must mention.  I had to get it right.  My mental list was dry eyes and mouth, coughing, dry lips, problems with taste.

This is an approximation of what I told the doctor:

I have dry eyes and dry mouth.  This morning I had trouble opening my eyes when I woke because of how dry they were.  I just put a cough drop in my mouth, because otherwise, I would cough all through this appointment.  My lips are dry and burn all the time, and the only thing I can tolerate putting on them is Vaseline.  My sense of taste is off.  Most of the time I can't taste processed foods properly.  I think it's that I can't taste the flavor chemicals used in processed food.  Sometimes I will have a short stretch where a food tastes fine, then it tastes awful again.

I no doubt don't have the exact order of what I said, nor do I have the exact words.  I do know that I mentioned my sense of taste last, ending with the remark about the chemicals.  The doctor listened to me as I reported my symptoms, and at about the time I began talking about my sense of taste, he wheeled his chair over to the computer and checked a box, which was no doubt the diagnosis. 

He wheeled his chair back over and said, "Dr. ________ referred you to me because you tested positive for Sjögren's syndrome."  He then asked me a few questions.  He wanted to know if I was in any pain from my joints.  My pain has been on the increase during the last six to eight months, ever since the dryness really started ramping up.  I've had a lot of pain in my upper legs, which has been partially improved by adding a salmon oil supplement.  I told him about that. 

He asked another question about my joints and swelling, and I mentioned that I do have some puffiness around some of my finger joints.  I didn't mention arthritis, and I have long believed that I was beginning to develop it.  He looked at my fingers, but made no comment about whether my joint situation is Sjögren's or arthritis.  I don't suppose it matters, since a rheumatologist treats both conditions.

He then proceeded to tell me about Sjögren's and gave me lots of suggestions about things I can do to help with the dryness, 100% of which I already knew and had already long been doing.  I listened politely, relieved that it didn't sound like I would be told to get a lip biopsy.  Whew!

As the doctor talked, he mentioned pilocarpine, which is a drug taken orally that can help with dryness in the mouth and eyes.  I had already learned about it online.  The doctor asked if I wanted to get a prescription for it.  I said that I wanted it.

The doctor then spoke about hydroxychloroquine, which I knew was the main treatment for Sjögren's (and I'm sure most of you have heard of hydroxychloroquine because of events from 2020).  He said that it slows the progression of the disease but doesn't cure it.  Hydroxychloroquine will reduce brain fog and the pain associated with Sjögren's.  He asked if I wanted a prescription for hydroxychloroquine, and I said that I did.

I was leery, because my thyroid medication journey was very difficult, having to go from one bad medication reaction to the next.  Nevertheless, I have to start the journey for Sjögren's and will deal with whatever happens.  

It's supposed to take at least six weeks for pilocarpine to help with dryness.  The hydroxychloroquine will more than likely take at least six months to help, and that's assuming that I don't have a bad reaction to the generic drug.  

I am relieved that my appointment went well and that I ended up with two prescriptions.  My next appointment is in April.  

Surviving Covid the Second Time

This post was published in my main blog, and I have copied it over to this blog and backdated it to December 25, 2024.

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Hello, world!  How are you?  I just recovered from covid, and it was awful!  Yesterday was the first day that I entirely felt like myself again in both mind and body.

Let's recap.  I posted about my blog plans on December 8.  On December 9, I had an unpleasant run-in with a custodian.  I noticed a very large, sticky spill in my classroom.  I am someone who has always cleaned up minor spills and only calls for help if it's blood or a very bad mess.  This was the latter.  It was thick, sticky and gooey, and covered over a six-square-foot area.  I think something spilled the previous week and dried over the weekend.  

The custodian came in and appeared to clean it.  I nearly fell when I walked over to check it after he left the room.  He had spread water all over the dried spill and made no attempt to clean it up. 

To be clear, approximately 25 students were in the classroom with me, and the custodian had left this large area covered with water and no warning sign.

After being moistened, the spill became a thick sludge that was as slick as ice.  I nearly fell and called for the custodian to come back and finish.  They blamed me and called me "rude" for being upset.  

I became tired on December 11, which I thought was a flare from what happened with the custodian.  It might have been, and there's no way of knowing.  On December 13, I felt out of sorts and depressed, which in hindsight I always notice is an early warning sign of me coming down with something.  On the 14th, my nose started running.

The week of December 15 was semester finals week, the very worst timing to get sick.  On the morning of Monday, December 15, I woke up, obviously with a virus but not enough to concern me, at least not for the first 10 minutes I was awake.  The fever then hit me, 101.3 degrees.  I was dismayed and worried.  I didn't want to take a covid test.  I wrestled with the thought for several minutes, even though I knew all along that I had to take the test.  It was positive.

I was disgusted and a bit angry.  I flung down the covid test and glared at it.  I walked around fretfully for about 10 minutes before I entered an absence for the day.  I could not miss semester tests on Wednesday and Thursday, and yet it was quite likely that I would have to be out.

I went to the school, wearing a KN95 mask, and got my classroom ready.  I came home, feeling awful.  I visited the CDC's site and read all the current information on covid.  I concluded that I could return to school once my fever went down without the aid of medication, so long as my symptoms were improving and I wore a mask.  I think that's a bit too lenient, but it was in line with what the CDC says.  My fever came down on Tuesday morning, and I did feel a little better.  I returned on Wednesday, masked and feeling awful.  

Students can download an app called Photomath where they can photograph any math problem and get all of the steps and the answer.  If I hadn't been present, many of my students would have used their phones to cheat on the test.  No, sir.  I wasn't going to allow that.  I fight it constantly.  Students are very sneaky.

By Thursday afternoon, wearing the mask was absolute torture, and I felt terrible.  I got the last grades entered, left a big mess all over my desk and floor, and walked out the door immediately after the bell rang to dismiss.  I flung things all over as I worked on grades the last two hours on Thursday due to my distress, so I will have quite a mess to pick up on January 6.  Lots of tests were dropped to the floor as I finished with them.

In brief summary of the virus, I had a horrific cough to the point that I lost control of multiple bodily functions as I coughed.  I'll let you figure out what that might mean.  I had terrible acid reflux, and a nose that ran like a faucet, meaning out of nowhere a complete liquid stream would run out of my nose and onto my clothing.  I was very tired and slept a lot.  Those were my symptoms.

I was definitely sicker this time than the first time I had covid.  I was getting better by December 22.  On December 24, I felt pretty normal mentally and physically.  My sense of taste is still off.  I am not coughing at all.  It's odd that I coughed for less than a week with this bout of covid, but in October, I had a mild virus that caused terrible coughing that lasted for six weeks.  Huh.  Who would have thought?

Today is the first day I can type well.  I started working on my blog posts again on Sunday, but my typing was bad.  I guess I was hitting the wrong keys.  I ended up with typos every few words.  I've done much better today.

I got my post on the musty books finished yesterday.  The one on musty books is lengthy and involved, and I spent around three hours creating it.  I'm soon going to work on my Hidden Clues posts.  It looks like what I planned for one post needs to be two posts.  I also will be listing books on eBay and Etsy. 

I have already listed some books on eBay, and I have another small stack pulled.  I'm going to read some more of the teen book that I found earlier today.  It's another apocalyse novel.  I haven't read one of those in a while.

The book listings and the blog posts are my focus during the next few days.  I go back and forth on what I work on.  I work a little here and a little there, and eventually, I'll get it all done.  Hopefully by next week, I'll post one of the blog posts.  I like to let them sit for a few days and read over them a few times.  Typos are a huge problem for me right now, even though I'm much improved.  I try to get all of them corrected if I possibly can.

If there are still any typos in this post, then you know why.

Positive Test Result for Sjogren's Syndrome

The last few months have been rough with multiple events causing increases in inflammation.  School started, we have new textbooks, I got my Covid vaccine, and I caught three or four viruses in September and October.  The viruses ran together, so I'm not sure how many I had.  The one from late October caused a terrible cough which I still have.

My struggle with dryness continues.  In my post from August 25, I wrote in regard to my summer autoimmune flare:

I feared that I had Sjögren's syndrome, which causes excessive dryness.  I have suspected Sjögren's syndrome for years, but I tested negative in the past.  Most people with Sjögren's syndrome do test negative, so that doesn't rule it out.  I plan to be tested again later this year, just in case the test shows something.

I was tested two weeks ago.  I tested positive for Anti-SSA/Ro antibodies, which are autoantibodies present in around eight different autoimmune diseases, most notably including Sjögren's syndrome.  I am being referred to rheumatology, but I know it is Sjögren's syndrome.  I have the hallmark symptoms.

Back to School Update

In a recent post, I wrote about my six-week autoimmune flare, caused by a chipped tooth.  I improved immediately after the tooth was repaired.  It's been a roller coaster ride since then.  I had temporary deep fatigue from August 8 to 10.  On the afternoon of August 9 during a meeting, I became so tired that I nearly fell out of my chair. 

This fatigue was caused by the dental x-ray of August 5.  The assistant, who I previously stated had an odd attitude, zapped me without covering my thyroid.  My chart is flagged that my thyroid must be covered when I am x-rayed.  She ignored it.  Right as she hit the button, I realized that my neck was uncovered.  Ugh.  I paid for that, but at least it was only for a few days.

I improved again, but the school year didn't start well.  We have new textbooks, so the entire year will be highly stressful.  A few days after I returned to work, I realized that the summer update to my work computer messed up the Smart Board.  I use the Smart Board for all instruction, so this was a big problem.

I put in a work order.  It was fixed but still screwed up and even harder to use.  This was a disaster, since by this point, the school year had started.  I put in another work order.  They figured it out on the second attempt.  Finally, I was functional on the fourth day of school.  

This made the first full week of school very stressful.

Last week was the second full week of school.  The system for distributing IEPs for special education students has not been working in Oklahoma, and this is a state-level problem, not local.  My school finally managed to get us the information last Monday.  Since I was giving a test on Wednesday, I had to speak to every special education student that I have in class about their accommodations.  

On Tuesday and Wednesday of last week, all of this happened:

• Fire Drill
• spoke to 30 students about accommodations and their needs
  
• Open House (late night Tuesday)
• Lockdown Drill
• Picture Day
• gave a test
  

And to top it off, a neighbor's cat was killed by dogs on Tuesday morning.  I also found out about the death of a very friendly neighborhood cat on Tuesday, likely from poisoning.

Everything I just mentioned caused a hard flare.  I felt awful all week.  I had a three-day weekend for the Labor Day holiday.  It took me from Friday evening until late Sunday evening to get back to feeling okay, so I lost most of my weekend.

I've had a crummy start to the year.

At least my eBay and Etsy sales are greatly diminished as I planned, and I'm doing okay with keeping both stores open in a limited capacity so that I don't lose my search rankings.  I currently have 67 items on eBay.  My active Etsy listings continue to drop as more items deactivate, reaching the end of their four-month run.  I'm down to 154 listings on Etsy.  Around 20 more will deactivate in a few days.

In case you haven't read my posts from the last few years, I usually shut down both stores for the first two months of school due to the autoimmune flare that occurs during the early part of the school year.  I am definitely in an ongoing flare that underlies the hard flares that I'm also experiencing.  Overall, I'm not doing that bad.  I mean... it could be a lot worse.

By the way, the real reason I decided to leave both stores open is because I have some free listings on Etsy due to a glitch.  21 of my Etsy listings have been expired for months and yet are still active listings.  By keeping the listings active, they continue to stay active indefinitely.  

I reasoned that if I was keeping Etsy open, then I would keep eBay open as well, only I deactivated most of my eBay listings.

My reading has been very sporadic.  I'll read a few books, then I get too stressed or have a flare.  When that happens, I go days or weeks without reading.  I've managed to read a few books in the last few weeks, which is surprising considering everything that has happened.  I will publish a few reviews soon.

I always bottom out with my thyroid sometime during September.  That should happen in the next two to three weeks, and then I will steadily improve.  How I feel at any given time is directly tied to what happened two weeks before, due to the pituitary-thyroid feedback loop.  Since last week was particularly awful, I expect that I will bottom out sometime next week. 

A Six-Week Autoimmune Flare of Mysterious Origin

The moral of this story is that a noticeable decline in physical well-being can be caused by something so ostensibly minor that you'd never suspect it of significantly impacting your health.

My summer break was not that great.  I had a lot of stress up until the end of June.  On June 23-25, I had to do a project outside in the summer heat.  The project was hard work, and I am very heat and sun sensitive.  I got up before daybreak each day and worked on this project from slightly before 6 AM up to 10 AM or so.  It was brutal.

Right before I did this project, I had thyroid labs done, and they were perfect.

Around July 1, I noticed that I was in an autoimmune flare.  Currently, my primary flare symptom is that my lips become unbearably dry.  My lips are dry all the time, but any flare increases the dryness to an unbearable level, resulting in my lips stinging for several days.  After a few days, the stinging subsides, and my lips return to my normal dryness, which is annoying but bearable.

Beginning around July 1, my lips began stinging.  I decided that my project of June 23-25 was the cause and figured that the stinging would subside within a few days.  It didn't.  

By July 8, I was really freaking out mentally.  My lips were stinging 24 hours a day.  They felt like they had been rubbed with commercial-grade paper towels.  It was very upsetting, and I spent hours online trying to figure out what was happening.  I was miserable.  

You need to understand that when my lips become inflamed that nothing helps.  All brands of lip balm irritate my lips.  Even brands for sensitive lips irritate my lips.  Aquaphor was my savior for a couple years until it badly burned my lips one night.  I looked like a clown the next morning.

I can only use Vaseline or petroleum-based hydrocortisone on my lips.  Everything else irritates them.  The Vaseline sometimes irritates my lips.  

During the last 4 1/2 years since my lips became unusually dry, I've tried drinking more fluid, drinking sports drinks, changing my toothpaste, and everything else you can possibly imagine.  So don't give me any advice.  I've read every piece of advice imaginable and acted on most of it, to no avail.  I just have to put up with it.

My bouts with stinging lips never last more than around three days.  This is why I was so upset by July 8.  I was past the one-week mark.

Around July 8, I realized that I had been bitten by something.  I worried that it could have been a tick.  I figured that I had been bitten when I did my outside project on June 23-25.

I was then really freaked out.  I am fearful of ticks and Lyme disease.  A former student of mine was bitten by a tick around 16 years ago and got Lyme disease.  It wasn't caught quickly, and she still has continuing very serious health problems.  

So... I worried about Lyme disease.  However, I talked myself down, reasoning that I probably didn't have Lyme disease.

I was distinctly more tired than was normal, which was odd for summer break.  I had an increase in muscle aches.  My thyroid was more swollen than normal for me.

I tested myself for Covid.  Nope.

I feared that I had Sjögren's syndrome, which causes excessive dryness.  I have suspected Sjögren's syndrome for years, but I tested negative in the past.  Most people with Sjögren's syndrome do test negative, so that doesn't rule it out.  I plan to be tested again later this year, just in case the test shows something.

But autoimmune thyroid disease causes dryness as well.  The problem was that I was on summer break, and nothing was going on.  Why were my lips stinging?  They continued stinging all of July and into August.

I was set to go back to work on August 8.

On August 7 as the day progressed, I noticed that the infernal stinging was easing.  By evening, it was gone.  Oh, the relief!  My lips had stung for approximately six weeks, and suddenly they weren't.  They were still dry, but the stinging had eased.

I was perplexed.  Something must have changed, but what? 

I thought back to recent events.  I purchased my new car on July 29, and it was a very tiring experience.  However, that would make me worse, not better.  I was feeling stressed about going back to work, but that would also make me worse, not better.  None of this made sense.  Why was I better?

I then realized.  I went to the dentist on August 5 to fix a broken filling. 

Bingo.

Let's back up to late June.

I went to the dentist on June 27 for my six-month cleaning.  That doesn't have anything to do with it, but I noticed either slightly before or after the cleaning (between June 24 and June 30) that the outside front corner of tooth #18 had become sharp.  It had chipped just a little.  It seemed fine, so I decided not to worry about it.  I don't think it could have been repaired at that time unless I wanted to be extreme and get a crown to fix a mild chip in a tooth.  That would have been illogical.  I figured the tooth was okay.  It didn't hurt.  I just had a sharp corner that had not been like that before.

On the late afternoon of August 2, after the dentist was closed for the weekend, the front wall and part of the filling on tooth #18 broke off, causing a hole.  It didn't hurt.  I did clean the hole by aiming a water pick into it.  That was a mistake, but even then, it was just a dull ache.  I tested the tooth by biting down on it and found that it was mildly pressure sensitive.  But at least I wasn't in pain aside from some cold and pressure sensitivity.

On the morning of August 5, I called the dentist, and they worked me in that afternoon.  The filling was repaired.

I have to comment about the dental assistant.  She didn't seem to understand my concern, simply because I was not in pain.  I'm sorry, but a hole in a tooth needs to be repaired ASAP.  It will break further, and I will do anything to avoid extreme tooth pain like what I experienced in 2021.  

Fortunately, the dentist was not dismissive like she was.  The assistant's attitude was odd.

It's now apparent to me that the minor chip in tooth #18 must have also caused a crack in the filling, just not enough for me to know.  The filling must have become leaky, causing bacteria to get inside and then enter my blood stream. 

I had a leaky filling for six weeks.  That's why my thyroid became more swollen and why I was so tired.  My lips burned all of July and into early August because of what appeared to be a mildly damaged tooth.  Who would think that such a minor chip would cause that much discomfort for six weeks?

In 2022 in my post "What Happened with My Teeth and Some Advice," I mentioned how my health improved after two bad teeth were removed.  Having good teeth is extremely important.  If you have any kind of problem with your teeth, get it fixed if at all possible.  I guarantee that any bad teeth are impacting your health in some fashion, even if you don't notice anything.

How Radiation Affects Me

When school started, I had a minor thyroid flare.  I thought it was going to be a fairly significant flare, but it wasn't.  I believe because I am now taking only Tirosint, which is hypoallergenic, that my flares will be less significant than they used to be.  That's very good news.

I recovered from the start-of-school flare pretty quickly and was feeling good about everything at the beginning of this month.  I had a routine health screening on September 5 that involved radiation.  As always, I asked for a thyroid shield.  The technician stopped dead in her tracks and seemed like she had a problem with the request.  She then asked if I knew who Dr. Oz was and mentioned how he had convinced people to use a thyroid shield when it isn't necessary.

I told her that I have thyroid disease and that when I didn't use a thyroid shield in 2016 that it shut my thyroid down for two months and that I was deathly ill.  (Deathly ill is not an exaggeration.  I was sicker than I've ever been in those two months.  It was absolutely awful.)  She put the thyroid shield on me and remarked that everyone is different.

I realize that the thyroid shield is annoying to these technicians, but some of us need one.  For me, it's not a frivolous request.  I shouldn't have to explain why.  I am very nervous when I am exposed to radiation even with the thyroid shield on.  I was that sick in the fall of 2016. 

I believe that some of the radiation still gets into my thyroid even with the thyroid shield.  After I typed my previous sentence, I checked via an online search.  The shield does not block all of the radiation.  It does reduce the exposure by up to 50% and reduces the dose by 2.5 times.  This means that my thyroid did get exposed to radiation on September 5, just at a lower dose than it would have without the shield. 

This is why I felt a noticeable thyroid flare from September 6 through September 23.  On September 24 (Sunday), I suddenly felt like I was getting back to normal (normal for me).  I was also able to resume working through my books on LibraryThing since my motivation suddenly returned.

Back in early June, I started thinking about the Covid vaccine and what to do.  I got Covid on July 14, 2022, and received the bivalent booster on September 23, 2022.  At that time, the recommendation was to wait around two months after having Covid to get the vaccine.  I now believe that I got the booster too soon, which is why I ended up with nearly unbearable hives beginning just a few days after getting the booster.  The hives lasted for several months.  My medication has been changed five times in the last year because of Covid and the bivalent vaccine.

The recommendation now is to wait to vaccinate until three months after having had Covid.  To my knowledge, I haven't had Covid since July 2022.  My concern, rather, was how the vaccine would affect me since I have been negatively impacted to some degree by every dose of Moderna.  Each time, my thyroid has taken a hit, and I have had at least a minor thyroid flare.  What happened last year with the vaccine was my second-worst thyroid flare ever, second only to the radiation-induced flare of 2016.

In early June, I felt very nervous about getting another shot and wasn't sure what to do.  As the summer progressed, I decided that my desire not to get Covid again far outweighed my desire to avoid another vaccine-induced thyroid flare.  I got the updated Moderna shot on Friday, September 22. 

I found that I didn't feel that great Friday evening through Sunday.  I'm better this week.  I have some mild hives, but some of that may be lingering symptoms from the radiation-induced flare.

My Thyroid Rollercoaster

I'm a bit mentally detached.  This is due to my roller coaster thyroid levels of the last year.  Here is a rundown of my year, indicating by month whether I was undermedicated or overmedicated based on how I felt.

August 2022 - under
September 2022 - over
October 2022 - over
November 2022 - under
December 2022 - under
January 2023 - under (even worse)
February 2023 - under
March 2023 - slightly under, felt normal for around 10 days at the end of the month
April 2023 - over
May 2023 - over (even worse)
June 2023 - under
July 2023 - under

My levels were just right for around 10 days out of the last year.  That is why I'm mentally detached and don't care one way or the other.  My books will sell, or they won't.  At least they are listed.  I have other concerns.

I go back to work on Thursday, August 10.  School starts one week later on Thursday, August 17. 

As of now, I plan to keep my stores open.  I have misgivings, which are increasing.  

In the middle of July, my medication was adjusted again for the fifth time since I had Covid in July 2022.  This is a slight dose increase.  I had trouble getting the prescription and had to go to mail order.  While I was waiting on my 81.5 mcg dose, I alternated between 75 mcg and 88 mcg, which averaged to 81.5 mcg.  It is okay to do that, although my body is so sensitive that it isn't ideal.

I started the new 81.5 mcg dose yesterday.  It's the same medication I have been taking (Tirosint) with the same four hypoallergenic ingredients.  My body shouldn't be able to detect a difference, yet it does.  My body knows that I've never taken the 37.5 mcg and 44 mcg (paired together to add to 81.5 mcg) capsules before, and I am already having a reaction even though I really shouldn't be having one.  My body is that extremely sensitive.  

Thyroid Update - Continuing to Seek the Correct Post-Covid Dose

I write these posts hoping that people seeking answers will stumble across them via their online searches.  The online thyroid groups and websites are full of misinformation.  Some of the information is helpful, but everyone is different.  I was extremely overmedicated in 2016 and 2017 and didn't realize the extent of it due to the widespread online content that indicated that everyone should have their T4 levels at the top of the range.  If I had known better, I would not have agreed to some of my medication changes during those years.  

I also now realize why I became so much sicker in 2014 when I started thyroid medication.  I had an increase in fatigue, aches, and pains plus a host of other symptoms that I never had in the first place.

It wasn't that I needed to take a bunch of supplements each day or that I needed to go on an extremely restrictive diet.  I didn't need to check my adrenals, detox my liver, or follow the dozens of bizarre suggestions that are recommended online.  

All I needed was to be on a clean thyroid medication. 

Tirosint, a name-brand version of levothyroxine, is a liquid gel cap with only four ingredients: levothyroxine, gelatin, glycerin, and water.  It is hypoallergenic.  Many thyroid patients, including me, are sensitive or allergic to the fillers used in all other thyroid medications.  We are forced to take medications that increase inflammation, thereby exacerbating our autoimmunity.  We then feel worse after starting treatment.

Generic levothyroxine (the first order of treatment) gave me terrible pain in my gums to where I had to go on a bland diet and could hardly bear to brush my teeth.  Even brushing softly with the most gentle toothbrush I could find caused intense pain.  I had awful aches and pains all over my body that I never had before treatment. The fatigue was far worse than before treatment.

Synthroid was the next order of treatment.  I was okay on the 50 mcg dose that was white with no dye added, but I soon needed a higher dose.  The 75 mcg dose had a dye in it that made me feel as if I had the flu for up to four hours each day.  During those four hours, I had a fever of above 100 degrees and felt very ill.  

I was placed on natural dessicated thyroid (WP Thyroid and later NP Thyroid) for a number of years.  These medications are considered the "be all to end all" by the online folks.  Not for me.  I was very allergic to them.  I had terrible itchy rashes that were nearly unbearable at times.  The rashes were so awful that I had to take four to six antihistamine pills each day to make the itching bearable.  Quitting the natural medication ended the rashes.

Now I am on Tirosint only.  My insurance dislikes Tirosint due to its high cost and will only approve it for one year at a time.  Each year, my provider has to give documentation that the other medications have failed.  One time the rejection letter was sent to me, and I found it a bit rude to be honest.  Insurance companies do their best to keep people ill.  It's infuriating.

Now to my update.

My thyroid situation continues to be problematic.  On July 14, I passed the one-year anniversary of getting Covid.  My thyroid levels have been screwed up ever since July 2022.  As I've said in past posts, that's exactly why I didn't want to get Covid...

Check out my TSH.  TSH is thyroid stimulating hormone.  For someone with thyroid disease, it should be at the bottom of the normal range, at 1 or less.  A rising TSH indicates that the pituitary gland senses that the body does not have enough circulating thyroid hormone.

Basically, my TSH has gone bonkers ever since I had Covid.  My immune system is in turmoil, and it can take one to two years for it to settle down.  I was in a similar situation back in 2016, and that took two years to resolve.

T3 is the active hormone, and I'm getting back to a good level.  The body converts T4 to T3.

T4 is the hormone that is produced by the thyroid gland.  My thyroid doesn't produce enough, so the Tirosint I take gives me the T4 that I need.

The T4 situation in my body is complicated, and I'm not going to attempt to explain fully.  I will say that I cannot have my T4 anywhere near the top of the range.  I believe around 1 is what I need, and that amount is too low for many other thyroid patients.  It angers me to see the misinformation in the online thyroid groups where everyone insists that everyone should make sure their T4 is near the top of the range.  If I did that, I would be miserable from being overmedicated.  

Most thyroid medications absorb at a rate of 60% to 80%.  Tirosint absorbs at about 100%, so patients can be overdosed if providers don't understand how cautious they need to be with it.  Many providers think that Tirosint absorbs the same as other medications, but patients need to be on a lower dose of Tirosint than they would with other brands of levothyroxine.

Thyroid patients are rather vocal about what they need regarding their condition.  This is because our condition makes us feel truly awful when the levels are off.  Being overmedicated and undermedicated are equally bad but in different ways. 

Levothyroxine is a Goldilocks drug.  This means that it must be dosed at the precise amount that the patient needs in order for the patient to feel okay.  This is hard to do, as you can see from my bouncing TSH level.  My medication has been adjusted five times during the past year as we continue to seek the precise amount that I now need post-Covid.

The vocal nature of thyroid patients causes general practitioners to think that their thyroid patients are difficult and have mental problems.  Their patients have results in the normal range, and they don't understand why the patients continue to complain about symptoms.  They don't understand that we tend to be allergic to most brands.  They also don't understand that each of us has a specific level within the very wide normal range which is the only place where we feel okay.  That specific level is different for every thyroid patient.

At each appointment, I am direct about how I feel and what I think I need.  I am fortunate that my provider also has Hashimoto's thyroid disease and works with me.  She has told me of the gaslighting that she suffered when she was diagnosed, and her bad experience led her into specializing in thyroid disease.  Sometimes I defer to her opinion, and other times, she goes with what I feel is right.  

In January, I was not on enough medication and had very low energy levels.  The fatigue was intense.  I was taking Tirsosint 75 mcg.  My provider prescribed Tirosint 100 mcg since I was doing so badly.  Oh, no!  If I were on one of the less absorbable versions of levothyroxine, that dose increase would have been fine. 

I said that I wanted to go with 88 mcg and that 100 mcg would be too much.  I instinctively knew it would be too much.  I know how well my body absorbs Tirosint.  She reduced the prescription to 88 mcg.  

I was correct.  In late March, I felt perfect.  88 mcg was the way to go.  Unfortunately, the additional thyroiditis caused by Covid then cleared up, and I became overmedicated.  I cringe when I think about how bad that would have been if I had agreed to the 100 mcg dosage.

I titrated down by skipping one dose of 88 mcg each week.  In early June, my prescription was reduced to 75 mcg, although I suspected that would be too low.  However, we needed to see, so I agreed to go down to 75 mcg.

I could tell very quickly that it wasn't quite enough.  By late June, I was definitely undermedicated.  I was getting tired more easily, and my gums began hurting.  My recent labs show the decrease in T4.  I requested that my dose be changed to 81.5 mcg (via Tirosint 37.5 mcg paired with Tirosint 44 mcg), halfway between my two previous doses.  My provider agreed and said that it's worth a try.

It could be that my thyroid is tanking again and that I do now need 88 mcg.  However, the high absorption of Tirosint makes me cautious, so I want to try the middle dose first.  Tirosint is the best thyroid medication for me as it has none of the horrific side effects I've had from every other medication, but I must be very cautious with these dose increases.  

I had a problem getting the new prescriptions filled.  This has happened before, so I've changed pharmacies several times over the years.  I end up at whichever pharmacy can get my specialized thyroid medication.  Here I go again.

The problem this time is that Tirosint 37.5 mcg and 44 mcg are new doses that have only existed since early April.  Suppliers aren't stocking them.  I knew that it take me awhile to call pharmacies in central Oklahoma trying to find one that could get those doses.  I didn't care to waste an hour or two with no guarantee of success, so I went with the Tirosint Direct program.  Highland Specialty Pharmacy in Hattiesburg, Mississippi, is a supplier of Tirosint through the Tirosint Direct program and is said to be the best source for Tirosint.

As I awaited the new capsules, I alternated the 75 mcg and 88 mcg capsules to simulate the 81.5 mcg dose.  I always have a variety of Tirosint capsules from past prescriptions and can use the leftover capsules when needed.

While I could have gone with a prescription for 75 mcg and 88 mcg and alternated, it's better for me to be on the same dose each day.  I can feel the difference when I take alternating doses.  On the days I take the 88 mcg, I feel hot for a short time.  That's a sign of too much hormone circulating.  I feel a bit cold on the days when I take the 75 mcg capsules, which indicates too low of a dose.  This variance tells me that I'm probably correct that I need 81.5 mcg. 

Before I conclude, I want to state that I don't feel bad at present.  I have some symptoms but am okay.  

June Thyroid Update

In past posts, I detailed what happened after I got Covid last July followed by the bivalent Moderna vaccine on September 23.  I have perpetual thyroiditis caused by autoimmunity, which means that my thyroid is always slightly swollen and never works at a normal level.

The combination of Covid and the bivalent vaccine caused a significant flare in my thyroiditis.  Last fall, I found an article on the CDC's website about how some people experience a six-month flare of thyroiditis after getting a Covid vaccine.  For that reason, I knew that the flare would likely settle down at some point.  That didn't help me in the short term. 

We had to increase my medication twice, in early December and again in late January.  I could barely function.  In early March, I still didn't feel that well, but my provider said that we needed to wait until early June to give enough time for my T3 level to recover before making further adjustments.  I'm glad that we didn't increase in early March, considering what then happened.

In late March, I began to feel better.  Around April 1, I felt optimal.  That was when I realized that I had just passed the six-month threshold after having received the bivalent vaccine.  That then meant that the thyroiditis caused by the vaccine was resolving.  And so it did...

As April progressed, I began to feel more and more overmedicated.  By April 28, I couldn't stand it anymore.  I was losing weight and had excess energy, tremors, heart palpitations, and insomnia.  I don't like wasting medication, so I decided to titrate down myself with what I had instead of getting tested and asking for a new prescription.  

I decided to skip one dose each week, which would gradually lower my dose to the next level down from where I was.  Thyroid medication has a half-life of one week, so it's okay to skip a dose once per week to titrate down.  How I feel at any given time is based on the previous six weeks' average medication level, since it takes around six weeks for each dose to completely clear the body.

Being undermedicated is truly awful with very low energy levels, but being overmedicated is also just as bad but in a different way.  It's terrible having too much thyroid hormone circulating.  I feel this weird pressure behind my eyes that is extremely unpleasant when I'm taking too much medication.  I also feel jittery and feverish.

In April and early May, I only slept around three hours each night.  One night I was so wired that I didn't sleep at all and ended up being awake for close to 40 hours before I was able to sleep, and even then not for long. 

I've been so hyperactive and distracted that I have had just as poor of motivation (maybe even worse) than when I'm undermedicated.  It really messes with the mind to be so wired that it's like I've taken speed.  Right now I'm sleeping around four hours each night.  That is somewhat of an improvement.

Despite skipping one dose per week, I still felt overmedicated until about when school let out on May 19.  I have felt off in a nonspecific fashion since then, probably because of starting summer break which likely improved my thyroid function even more since I now have no stress.  I have just started a new prescription at the next dosage down, which is what I was on prior to the second dose increase from late January.  I feel like I've been on a roller coaster since early April.  It's crazy.

I seem to be alternating between feeling overmedicated and undermedicated, and the instability will likely continue for another week or so.  Perhaps then I'll have an idea of whether I'm on the right dose.