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.

March Thyroid Update

February 19:

I caught a virus around February 4, and it caused a significant autoimmune flare.  I got a little better, but then the extra website work of last week has caused another flare.  I thought my memory was bad last month; now it's even worse.  I am making a lot of mistakes.  I have cringed about a few online gaffes from the last week.  Oh, well.  I've gotten pretty used to embarrassing myself during flares and even sometimes when not in a flare.  

My next thyroid appointment is on March 7.  I feel certain that I am once again at a deficit and think it likely that my medication will be increased again.

March 16:

It didn't help that I caught two viruses in February.  The first virus from February 3 had mild symptoms but definitely impacted my thyroid levels.  I felt the hit.

The second virus from February 18 had moderate symptoms.  I had a lot of congestion, which lingered for around two weeks.  I didn't notice an impact to my thyroid.  I suspect that I was probably already so messed up from the first virus that any further impact from the second virus was negligible.

My thyroid levels were tested on March 6.

My TSH has come down.  Ideally, it should be no more than 1.  It is slightly higher than 1, but it's close to where we want it.  TSH is Thyroid Stimulating Hormone.  It increases when the body doesn't have enough T4, and it decreases as the T4 level improves.

My T4 level has improved, which is why the TSH decreased.

The problem is my T3, which has dropped.

I believe that the low T3 level is the sole cause of my mental stress.  I don't have enough thyroid hormone circulating in my brain, so my mental state is not that great.

I quit taking NP Thyroid in early December, which is a natural thyroid medication containing both T3 and T4.  I am now on T4 only.  The removal of the T3 in my medication has caused my level to drop.  My body should gradually adjust as more time passes.  The body converts T4 to T3, which is the active hormone that makes us feel good.  My body hasn't started doing that again like it should.

The viruses didn't help the situation, either.  Viruses impact conversion of T4 to T3.

I may need to add a synthetic T3 medication, but my provider wants us to give my body a little more time to recover from the two viruses.  Once more time has passed, we'll test again to see how I'm doing.  I have started taking a few supplements that are supposed to help with conversion of T4 to T3 in hopes of speeding up the process.  

That's where I'm at right now.

In summary, I feel like I can handle having my eBay store open.  I can fulfill any orders that I receive.  I hope that I do receive a number of orders, since my eBay shelves are packed.  In time, I will reopen my Etsy shop.  I will eventually begin listing new items for sale, but that's probably going to be awhile.

I look out for myself first, of necessity.  I didn't use to do that.  Now I know better.  Always be kind to yourself, and remember that you can always say "no" if a task is more than you can easily bear.  

The Irony of Covid Doing Me a Favor

With recent developments, I want to revisit what I thought happened and give my current perspective.  I continue writing about this in case the information is helpful to anyone who should run across it in the future.

This is from my November 12 post:

My immune system has gone bonkers since I got the bivalent Moderna booster on September 23.  I have heard of people having strong vaccine reactions after having had Covid, and unfortunately, I seem to have joined the crowd.  I had Covid in July, and I believe my immune system has gone into overdrive in an attempt to destroy the vaccine...

I've been dealing with hives and the most intense itching ever.  I have memory problems and a poor mental attitude, the likes of which I typically see in a strong autoimmune flare.  The problem is that I'm not exactly flaring, at least not in a normal fashion.  I feel certain that this is from the vaccine.

When I came down with Covid on July 14, it wasn't bad.  My thyroid took a hit for a couple weeks, and I seemed to get better.  I now think that my thyroid didn't recover. 

I do recall that I had intense hunger during most of September, to a degree that I hadn't experienced in many years.  I used to be intensely hungry all the time before I was put on thyroid medication nearly 10 years ago.  What I experienced in September was odd considering that I was supposedly stable on my medication.  The intense hunger started a few weeks before I got the bivalent Moderna vaccine.  The hunger wasn't caused by the vaccine, so my levels must have already become unseated.

I worsened noticeably after I got the bivalent vaccine, so it was also a factor.  However, Covid itself started the flare that worsened with the vaccine and then significantly worsened during the last two weeks.

I was stable on Tirosint 50 mcg combined with NP Thyroid 45 mg for three years, the longest I have ever been on the same medication.  I had intermittent hives for the entire time I was on NP Thyroid and suspected that the NP Thyroid was the cause.  I put up with the hives because I didn't want to have to go through the difficulty of switching medication and then months of trying to stabilize.

In early December, my provider agreed with my request to drop NP Thyroid and change to Tirosint only.  My Tirosint dose was increased to 75 mcg, and I quit taking NP Thyroid.

The hives continued until right around Christmas when they began decreasing.  Since then, the hives have continued to steadily decrease and then disappeared a few days ago.  I have no doubt that the hives were tied to the NP Thyroid.  

My T3 and T4 levels have improved slightly since switching my medication.  However, my TSH, which indicates whether my body is getting enough hormone, has increased significantly.  That is, significantly for me.  My numbers are never very high.  Apparently some people can have a TSH in the hundreds, while mine is always in the single digits.  More about that later.

Since my TSH went up, that means that I'm not getting enough hormone.  I am now taking Tirosint 88 mcg.  We will reassess in early March, and I may have to go up again.  Changing thyroid medication is a hassle since it can take months to get the dosage right. 

I want to share my test results since the average doctor would think that I am just fine and need no medication.  My levels are normal, yet I am quite ill.  The thyroid lab ranges are too wide, which is why many thyroid patients remain ill and untreated. 

Most doctors don't test the T3 free level.  T3 is what gives us energy.  Mine has been decreasing during the last three years, but I've been overall okay.  My body thought it had enough hormone.  When you look at where I am now, it seems okay.  I am not okay.

Always click on images to see them clearly.

Most doctors do test the T4 free level.  T4 is the inactive hormone that gets converted to the the active hormone, T3.  My T4 is down at the low end of normal.  Most doctors would think that this is fine.  It's not fine.

My TSH indicates that my body does not think that it has enough thyroid hormone circulating.  This is where you can see that I have a problem.

Even so, I am barely above the top end of normal.  I am quite ill if my TSH is anywhere above a 1.  Most doctors think that a 1 is borderline too low.  Most thyroid patients need to be at the very bottom edge of the normal range in order to feel okay.  That is where I was for the last three years, even though my T3 and T4 levels were kind of low.  My body was happy with the hormone levels.  It's not happy now.

Unfortunately, many doctors believe that thyroid patients should not be treated unless or until their TSH is above 10.  Mine is never above 10!  Doctors doom their patients to being ill their entire lives.  When the patients complain that they feel horrible, the doctors tell them that their labs are normal and that they need to see a psychiatrist.  The patients then become very upset, just wanting to be believed.

In closing, I take all of this in stride.  I stuck with the NP Thyroid for way too long because I didn't want to unseat my levels and have to go through months of readjustment.  Getting Covid and then the bivalent booster blew everything up, so I took the opportunity to drop NP Thyroid. 

I'm glad that I did drop NP Thyroid, and I can ruefully thank Covid for placing me in a position to where I felt able to face the fallout from making that change.  I will continue to have some hives as a side effect of my condition, but they should be at a much lower level from now on.