Warning about Online Thyroid Forums and Website Misinformation

I have spent countless hours in the last seven years searching online about my autoimmune disease.  First, I do not take advice from people online; I do not believe what I read online unless I have very good reason to believe it; and I certainly don't mess with my medication like so many thyroid patients do.  I take it as directed.

I was very difficult to stabilize on thyroid medication.  It took six years for my endocrinologist to get me on the correct amount of thyroid hormone.  She was often perplexed at my levels.  One time, she reduced my dosage, and my levels went up.  Another time, she raised my dosage, and my levels dropped.  During this time period, she pointedly asked me exactly how I take my medication.  She thought I wasn't following directions. 

I take my medication each day on an empty stomach when I first awaken.  It is my first act of the day.  I wait one hour or more to ingest anything other than water.  I wait four hours for supplements.  I learned through online searches how important that procedure is for thyroid patients, since just about everything reduces absorption.  I was first put on thyroid medication by my primary care physician, who didn't tell me any of those things.  So there is some good information online, but it's so hard to wade through the garbage.  

In the years when I was not dosed correctly, I spent countless hours reading other people's stories.  I was trying to figure out what was wrong with me and why my levels wouldn't stabilize.  I never did figure anything out during those years, but I did learn that thyroid patients need to be careful about believing much of anything that is on Facebook or on the popular thyroid websites.  

Before I continue, what happened with me was that my primary care physician had me on the wrong dose, causing more inflammation.  When I switched to the endocrinologist, she immediately changed my medication, which was wise, but I reacted quite badly to the medication she chose.  It caused a massive amount of inflammation.  I was then switched again several times, at least three times because of recalls and shortages.  I finally went through a relatively stable period on the medication that I am currently taking, and gradually, the inflammation reduced enough that my levels stabilized.  

Getting back to the thyroid websites, I finally figured out a couple years ago how wrong much of what they say is.  I knew all along that their commentary did not fit my situation.  What I mentioned in the above paragraph is not described anywhere.  Changing thyroid medications causes an autoimmune flare, which makes it hard for my levels to stabilize.  In the Facebook groups, so many people who don't do well on a medication claim that when they switched to another, they were immediately well.  Well, lucky them.  My body fights all thyroid medications really hard.  

When I am tested and find that my levels are slightly off, I prefer to stay on the same dose as my body gets offended at any change in thyroid medication, even a dose change for the same brand I am taking.  I prefer to be off some than deal with that mess for months.  And that just isn't accurately described by most people online.  They all act like changing to another medication is an instant cure.  That might be true for them, but it's very bad information for people like me.

These days I stay away from those websites as well as the thyroid groups on Facebook.  I occasionally visit the groups just to see what is going on.  I avoid the websites completely.  The websites are blatantly mercenary.  They also act like everyone is the same. 

According to those sites:

My thyroid hormone dosage is apparently never enough to treat anyone.  Oh, really?  Well guess what?  My thyroid actually more than halfway works.  That's why I don't need the high dosage that many other people do.  I would have a heart attack if I were to take the dosage recommended by the websites.  Much of the thyroid advice online is dangerous.  

Everyone's T4 level should be in the middle of the range and their T3 should be at the top of the range.  This is not true for everyone!  My levels were like that at one point.  I was so sweaty and wired.  I took a bath every few hours and could never get rid of the stickiness on my skin.  I could not sleep.  It was awful.  Both my T3 and T4 levels should be right in the middle of the range or slightly below the middle of the range.  I feel such scorn each time I see that stupid optimal T3/T4 chart that everyone shares.  I don't fit what it says at all.   

If one of those people should ever stumble upon this post, they'll comment and tell me that I'm wrong.  They'll say that the optimal T3/T4 chart is right and that they actually know better than me how I feel and what is right for me.  That's how bad it is.
 
I also felt scorn when I saw how the webmaster of one prominent site acted after a drug recall.  This person kept linking to a video of a song on YouTube as their response to each person who commented on the post.  I don't recall the song, but the title or content was such that it was supposed to be a way of trashing the company.  It was an odd response, especially to do it on every comment.  I lost respect for that person that day.  I think that person may have removed all of those video comments from that post as they don't seem to be there now.  It was a lapse in judgment for sure.

In the Facebook groups, everyone seems to assume that everyone is just like them or should be just like them.  It's so annoying.  Of course, that seems to be true of most everyone on social media, not just the thyroid patients.  

Let's talk about supplements.  Some of the supplement groups on Facebook are basically cults.  Be very careful about the supplement groups.  For that matter, be very careful about all Facebook groups that fall under the umbrella of heath.  There is one supplement group that I in particular think is very much like a cult.  I remain a member only because I sometimes check on them around once every couple of years just to see if they are still acting the same.

For another supplement, I am a member of several groups.  I think many people in those groups are obsessive about their supplement in a way that isn't healthy, although those groups are not as odd as the one I first mentioned.  I'm not going to say which supplements, since I don't wish to hurt anyone's feelings.

I will say that the people in these groups claim that the supplement has to be taken in a certain way, like with certain food or drink, in a certain amount, with a certain brand, and with certain other supplements.  It is quite restrictive.  Members in these groups often get upset, because they are overwhelmed with all the rules.  

Here's the truth.  Just take the supplement you want by itself.  Take it with food if it upsets your stomach.  Don't take it with a certain super-special food just because someone said so.  Don't take it with a bunch of other supplements just because someone said so.  

I have seen people's pictures of their supplements.  Some of these people take 20 to 30 supplements per day.  !!!

People who join the supplement groups tend to have autoimmune diseases, which means they have brain fog.  Blindly taking the advice of people with brain fog is a bad idea.

One last observation:  Searches on the Internet for various complications after a tooth extraction reveal results that are inaccurate.  The results are from dentists, so you think they would be accurate.  No!  The Internet is full of garbage.  If I am to believe what I have read, apparently how the extraction went for me was highly unusual and very few people have the kinds of problems that I have had.  Of course, I mentioned one complication to a colleague, and she nodded, "Oh, right!"  She had an extraction a couple years ago.  She had the same problem.

What I noticed is that every dentist has the same explanation, all copied from some source that is not accurate.  Ugh.

Oral Surgery Scheduled

My oral surgery for the removal of two teeth is scheduled for August 3 (read the above linked posts for the backstory).  I go back to work on August 6.  At the beginning of any school year, I have a moderate autoimmune flare.  There is nothing I can do to avoid it.  The change in schedule and stress of getting back to work causes my thyroid to shut down temporarily, and this results in me not feeling that great for up to two months.  I repeat this process every year.  

The biggest problem is actually the brain fog and not anything else.  I can say and do some dumb things at times.  I hate it when I say something really stupid due to confusion, and then a couple minutes later I am chagrined after I realize what I said.  This is why I am quite open about my condition, since it causes me to look like a fool at times.

With the oral surgery just three days before I go back, I am certain that I will have a strong autoimmune flare this year.  That will result in a lot of brain fog and my two-month recovery time being a very difficult and dysfunctional experience.  

Moderna Update and Beginning of Toothache

I received my first Moderna Covid-19 shot on February 24, which caused an autoimmune flare.  I had pretty much recovered (or so I thought) from that by March 30, when I received the second shot.  I then had another flare, which I didn't perceive to be too awful.  It was bad, but I dealt with it.

It was not until around May 10 that I realized how messed up I had been for 2 1/2 months.  I felt the depression lift.  I didn't know that I was depressed.  I knew that I didn't feel normal and that I was stressed, but I didn't perceive that it was a big deal.  When the fog lifted, it was like I had taken a happy pill.  Wow.  I hadn't been well physically or mentally for 2 1/2 months.

Graduation was three weeks ago.  The ceremony was held outdoors due to pandemic precautions.  Of course it rained on us.  It was rather... unpleasant.  We all laughed about it.  What else could we do?  I dealt with it okay, or so I thought.  However, my autoimmune disease does like to betray me.  The very next day I began dealing with horrific tooth and jaw pain that was quite intense.  It has really settled down in the last week, so I think I'm going to be okay without having to get major dental work. 

My dentist wants to pull a tooth and put a crown on another in an attempt to solve the problem, but that's like throwing the baby out with the bathwater.  They don't think that an autoimmune flare could be causing the pain, but I know my body.  In fact, I believe that the Moderna vaccine is still affecting my immune system, and that I'm not back to normal.  Oh, and my thyroid medication was recalled again in early May.  So there are several reasons why I would be having autoimmune problems at this time.   

Covid Vaccine Update

I have not been well this past week.  I had to work late on Tuesday, which is no doubt part of the reason why I felt quite ill (deep fatigue) in the afternoon and evening on Wednesday, Thursday, and Friday.  If that should happen this coming Friday, then I will wait until Saturday, March 13 to open the stores back up.

I have concluded that the first dose of the Moderna vaccine that I received on February 22 caused a significant disruption to my endocrine system.  I stated previously that I thought that the vaccine had caused a mild to moderate autoimmune flare.  The flare was at least moderate and perhaps a strong flare.  The deep fatigue that I have begun to feel is a delayed reaction to that flare.  How I feel at any given time is a reflection of what my thyroid hormone levels were 10 to 14 days ago.  This actually means that the symptoms from the flare may not have bottomed out yet.  I was vaccinated 12 days ago.

My endocrine system might have already recovered, but I might not feel that recovery for another week.  I will get the second Moderna dose in around 2 1/2 weeks, the exact date to be determined.  That will cause another disruption to my endocrine system.  The next six to eight weeks won't be easy.

Even with the reaction, the vaccine is well worth it.  I am happy that my body should be now approaching 50% immunity to the virus. 

Reaction to Modern Covid Vaccine

I have not been well this past week.  I had to work late on Tuesday, which is no doubt part of the reason why I felt quite ill (deep fatigue) in the afternoon and evening on Wednesday, Thursday, and Friday.  If that should happen this coming Friday, then I will wait until Saturday, March 13 to open the stores back up.

I have concluded that the first dose of the Moderna vaccine that I received on February 22 caused a significant disruption to my endocrine system.  I stated previously that I thought that the vaccine had caused a mild to moderate autoimmune flare.  The flare was at least moderate and perhaps a strong flare.  The deep fatigue that I have begun to feel is a delayed reaction to that flare.  How I feel at any given time is a reflection of what my thyroid hormone levels were 10 to 14 days ago.  This actually means that the symptoms from the flare may not have bottomed out yet.  I was vaccinated 12 days ago.

My endocrine system might have already recovered, but I might not feel that recovery for another week.  I will get the second Moderna dose in around 2 1/2 weeks, the exact date to be determined.  That will cause another disruption to my endocrine system.  The next six to eight weeks won't be easy.

Even with the reaction, the vaccine is well worth it.  I am happy that my body should be now approaching 50% immunity to the virus. 

Covid Update

 I have guided my behavior through all of this with a personal risk assessment for any possible scenario.

The Risks - Know Them - Avoid Them

Early in the pandemic when school was closed, I stayed in my house for two months and had groceries delivered to me.  That now sounds silly, but it really wasn't.  In March through May of 2020, around 10% to 33% of locals wore masks in stores.  I did not wish to be around the many people who weren't masking.  Staying at home was the right decision at that time.

In the summer, I began going to the store once per week at 7 AM.  I found that at least 80% of customers wore masks.  As the summer progressed into fall, the percent increased to 95%.  At the current time, mask usage in Walmart early in the morning is consistently at least 95%.  I feel comfortable going in there.  I tend to avoid a certain local grocery store, because the mask usage is a good bit lower.  I also avoid most stores, just to keep possible exposure to a minimum.

I have been particularly worried about the virus because of my autoimmune thyroid disease.  Autoimmune diseases are a curse because the people who don't have them think that the people who do are exaggerating or imagining their symptoms. 

Even knowing that, I was still a bit surprised last year when I saw that no autoimmune diseases are considered risk factors for Covid-19.  I know that autoimmunity is a significant risk factor, even if they don't. 

I find it just a small consolation that this month, the American College of Rheumatology acknowledged the risk to those with autoimmunity:

"Although there is limited data from large population-based studies, it appears that patients with autoimmune and inflammatory conditions are at a higher risk for developing hospitalized COVID-19 compared to the general population and have worse outcomes associated with infection," said Dr. Jeffrey Curtis, chair of the ACR COVID-19 Vaccine Clinical Guidance Task Force. "Based on this concern, the benefit of COVID-19 vaccination outweighs any small, possible risks for new autoimmune reactions or disease flare after vaccination."

Of course I've been right to be worried about the virus.

It's been a race against time to get vaccinated.  I have grown increasingly concerned as the weeks have passed, and more people have become lax about masks.  For the vast majority of our citizens, the wait is far from over.  

I did get the first shot of the Moderna vaccine on Monday.  I'm confident that I'm having an autoimmune flare caused by the vaccine.  I won't know for a few more days whether the flare will worsen.  Right now I consider it between mild and moderate, but I wouldn't be surprised if it ends up being a moderate flare.  It's worth it, however.  I would rather have an autoimmune flare than have Covid-19.  Besides, I have autoimmune flares at least four to six times per year, I'm quite used to them.  They are annoying, but I can handle them.

According to the New York Times, the Moderna vaccine is about 50% effective after two weeks.  That would be on March 8 for me.  I weigh the risk as I consider whether to start selling again on March 13, which is the first day of spring break.  

I will be more than 50% immune by March 13, and I can go to the post office when it first opens each day during spring break.  With my usual precautions, my risk will be low during spring break.  

On  March 22, I will be around 70% immune.  That is when I might have to begin going into the post office in the late afternoon when it is extremely busy, probably with people not wearing masks.  I am weighing the risks.  I'm really hesitant about resuming going into any public place in the late afternoon.  I have avoided doing that since spring break of 2020.  I'm not sure I want to break that rule just yet.

Covid-19 Vaccine

The current hot topic is whether to get the Covid-19 vaccination.  For me, there is no question.  I will get the vaccine.  Those who are against the vaccine feel that it might not be safe, that the development was too rushed.  

Many people may be unaware that scientists had previously worked on vaccines for two other severe coronaviruses, SARS and MERS.  In fact, Dr. Anthony Fauci has stated that the United States developed a vaccine for SARS.  It was never used, but that research helped with the Covid-19 vaccine.

It is a personal decision on whether to get the vaccine, and I won't pass judgment on anyone.  Gardasil has caused autoimmune disease in recipients, so those who have had that problem don't want the Covid-19 vaccine.  And other people have other valid reasons.

In my case, my life was forever changed by the Epstein-Barr virus, which causes mononucleosis.  It is now widely known that Epstein-Barr goes dormant and can resurface multiple times later in life.  Additionally, Epstein-Barr causes autoimmune disease.  That's what it did to me.

I had mono when I was 19.  I partially lost my sense of taste, and I was very weak and ill for six months.  I never came back completely.  I would say that six months after I acquired mono, I came back to 90% of what I had been before.  I never came back to 100%.  By the time I was 25 years old, I was 70% to 80% of what I was before I had mono.  As the years passed, I continued to decline.  Finally, I was diagnosed with autoimmune thyroid disease.  At the time of my diagnosis, I was at 40% to 50% of what I once was.  

On medicated at optimal levels, I am back to around 80%.  I am never better than that.  I often have days at 60% to 70%, and I still have some scattered days where I am at 20% to 50%.  I will never be cured, but I have good coping skills.

I partially lose my sense of taste every single time I have a stressful event.  During the last very stressful year, I have had problems with my sense of taste at least once per month.  Each occurrence lasts from a few days to a week or two.  This means that I have had a partial loss of my sense of taste for a significant portion of the last year.

I have read about the symptoms of Covid-19 in fascination and with great alarm.  Many of the symptoms are exactly like those of autoimmune disease:  loss of taste, dry skin patches, rashes, blurred vision, uncontrolled coughing, dehydration.

Since many people won't take the vaccine, I have to take it.  I want this to be over.

Acella NP Thyroid Problems

I went through a difficult couple of months because Acella changed its NP Thyroid pills.  So much for the company's claim that the medication did not change at all... I now have proof that it did aside from the obvious change in appearance.

I had an appointment on Monday.  The NP Thyroid pill contains two thyroid hormones, T3 and T4.  My T3 level dropped somewhat, and my T4 level dropped significantly.  My levels are back to where they were back in the spring before my medication increase of earlier this year.  Whatever Acella did to the pill reduced the pill's efficacy by 50%.  I can now see why I've struggled for two months.  My levels were dropping precipitously during that time.

I also take a second thyroid medication, Tirosint, that gives me extra T4.  My Tirosint has been doubled to make up for the reduction in efficacy of the NP Thyroid.  This means that I have now begun yet another difficult medication adjustment period which will last for 2 to 2 1/2 months.  This is the third medication adjustment I have had this year.

I am four days in and feel better than I did on Monday; however, I can tell that how I feel has just started to deteriorate.  I always feel better for most of the first week, then the drop begins.  I can feel the very beginning of the drop coming on.

This happens because the hypothalamus detects the sudden increase in thyroid hormone in the body due to the medication increase.  The hypothalamus then secretes a hormone that tells the pituitary gland to shut down the thyroid, which then makes the patient feel sick for two to five weeks or possibly even longer.  The lengthy adjustment period is caused by the long half-life of T4.  It takes weeks for the hormone to stabilize, which is why many thyroid patients feel bad for a lengthy period of time after any medication change.

I will bottom out at around four to five weeks after the medication increase, which will fortunately be during my winter break.  The third week is also usually a bit difficult, so semester tests will be a chore, but I will manage.  I always do.

The New Changed NP Thyroid

In September, the NP Thyroid pills changed in color, size, and shape.  The 60 mg pill changed from solid tan to gray with speckles.  The size and shape also changed slightly.  According to Acella, the company changed suppliers for the raw ingredient used in the medication.  The company states that the medication has the same formulation.

I respectfully disagree.  While the company may consider the "formulation" to be the same, the ingredients cannot be identical when the color and size of the pills have changed.  Many patients reported adverse effects as they began taking the new pills in August and September.

It was in late August that I became aware that the pills had changed.  I sorted my pills by old and new.  I took all of the old pills until I ran out of those.  I switched over to the new pills in late September.  By the middle of October, I was sick with hyperthyroid symptoms.  I suspect that the new pills temporarily resulted in a spike in thyroid hormone.  Having too much thyroid hormone in the blood is far worse than not having enough, in my experience.  I am very sensitive to the thyroid hormones. 

I also believe that my body is not absorbing the new pills as well as it did the old pills.  This matches other patients' reports.  The coating on the new pill is apparently harder than the coating on the old pill.  This would be the cause of the poor absorption.

While my thyroid hormone levels temporarily spiked in October, ultimately they decreased.  By early November, I felt okay again for around two weeks.  I believe that my levels were steadily dropping during that time, and for a brief period in early November, my levels were about right.  By November 15, I felt like my thyroid hormone levels were a little low.

Beginning Thursday, November 21, I felt a significant decrease in wellness each successful day up to Monday, November 25.  In addition to unpleasant hypothyroid symptoms, my blood pressure spiked by around 20 points.  I felt worse day by day, with the reappearance of more symptoms each day.  Fortunately, my three-month checkup was on November 25.

My thyroid hormone levels, both T3 and T4, had dropped due to the change in the NP Thyroid pill.  The T4 level had dropped a lot.

I do take another thyroid medication, Tirosint, in addition to NP Thyroid.  Tirosint is T4 only while NP Thyroid is a combination of T4 and T3.  My Tirosint dosage was doubled to make up for the T4 deficit caused by the change in the NP Thyroid pills.

Just a few hours after I took the new Tirosint dosage, my blood pressure dropped by 20 points and stayed down.  I felt warmer, although other symptoms will take longer to diminish.

Unfortunately, this means that I am at the beginning of yet another difficult medication adjustment period.  I probably will continue to feel better for around the next week.  After that, I will begin to feel sick.  This happens because the pituitary gland senses the sudden increase in T4 in the body due to the medication increase.  The pituitary gland then temporarily shuts down the thyroid, which then makes the patient feel sick for two to five weeks, or possibly even longer.

The lengthy adjustment period is caused by the long half-life of T4.  It takes weeks for the hormone to build up in the body.

I always go through a 2 to 2 1/2 month adjustment period before the levels completely sort out.

So if you take NP Thyroid and are no longer well, you are not imagining it.

Excerpt from Blog Post of November 15, 2019

I have autoimmune thyroid disease, known as Hashimoto’s thyroiditis.  The autoimmune aspect causes the trouble.  My body even launches attacks on the medication sometimes.  When that happens, I feel like I have the flu.  By the way, if you search online for information about the condition, the websites say how easy it is to treat. Clearly, the writers don’t have the condition, or they’d know better.

In early August, I finally was near optimal for the first time in five years.  It was great. Unfortunately, Acella Pharmaceuticals changed to a different supplier for one medication I take, NP Thyroid.  While Acella claims that the pills did not change, they actually did.  The pills are a different size and color.  Just know that any change in thyroid medication is the kiss of death for me.  My body goes through a hard adjustment that takes 2 to 2 1/2 months.  This doesn't mean that I feel awful all of the time, but I do have a lot of bad side effects and can feel sick for parts of each day.

Understand that my life is not horrible.  I am actually doing okay and often fine, in spite of what I just mentioned.  However, I often feel bad for part of each day.  I can actually feel fine one moment, awful a minute later which can last for just a few minutes or for 30 minutes up to a few hours, then instantly feel fine again.  On some days, I feel fine all day.  Unfortunately, I usually pay for it by feeling awful the entire next day.

I am nearing the end of my body's current hard adjustment to the change in medication.  I bottomed out right about on Wednesday, October 16, which coincided with the events described in this post.  It’s really unfortunate to be in a position where I must limit stress, and then I have people going off on me because they aren’t getting what they want.  I don’t think much of people who throw fits online in an attempt to bully others.

I also want to point out that my medication dosage has to be changed fairly frequently and that I typically go through at least one hard adjustment per year, sometimes two of them.  If I ever seem off, then you know why.  I cannot always cover the symptoms, even though I try hard to do so.