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. I'm not working right now. It's going to be far different starting August 10. I have some misgivings about keeping my eBay and Etsy stores open, but I'm going to wing it. If I can't handle it, then I'll close whenever I reach that point. If I can, then I'll keep the stores open.
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