How to feel better while waiting on tests?

Oh my goodness, @dracokat I see you posted on the 8th. How are you doing now? What’s happening? What’s next?

I can relate to your issues! My thyroid was working fine before surgery; just one massive nodule crowding everything! After surgery(July 2022) I was diagnosed with Hurthle Cell Carcinoma and they kept talking about how I had thyroid problems all along and that I had Hashimotos Thyroiditis. …news to me!
I don’t know how it all works, but the issues after surgery are tricky (muscle/bone pain, headaches, loss of focus, depression, insomnia, burning mouth, extreme fatigue, itching…etc.) I have always had a lot of issues with side effects from medications, so when I had to start taking medication it was a tricky situation. I have had several “over zealous Endocrinologists” who insisted on prescribing high levels of Levothyroxine and telling me I had to wait 6 weeks to determine if the medication was appropriate. The philosophy of keeping the TSH as low as possible to prevent cancer regrowth resulted in extreme side effects for me. When I was experiencing extreme side effects, the mantra of waiting 6 weeks to “SEE” if the medication was right, was not an option! My thyroid numbers remained in the normal range most of the times, however my side effects were extreme. I changed several doctors due this philosophy of waiting 6 weeks…..the constant leg cramps were SOOOOOO bad! I had suggested trying to get my thyroid numbers around the level of what they were before I had surgery, however my Endocrinologists (all from the cancer hospital) said that was not how things worked…..I never understood this comment.

Anyway, I changed doctors and my current Endocrinologist (still from the cancer hospital) listened to me and said that we could try it. He looked back at my history of blood work and tried a few different medications to see if my numbers were close to what I had before surgery. He was also willing to have my medication adjusted when the side effects were very bad….not wait the 6 weeks when the issues were extreme. I ended up on Levoxyl 50 mcg since it is a white pill and the dyes in the medications CAN be an added issue for some people. I was still having side effects on the 7 days a week so we were working on tweaking the dosage slowly to get the best results with minimal side effects. Although my dosage has been changed to try and find the lowest dose needed, the side effects are still better than any other medication that I tried (Synthroid and Tirosint- both tablet and liquid). I read that certain foods can throw off the thyroid, as well as stress, so some issues that started suddenly I waited to see before doing anything.

In the meantime, I have been trying to find an endocrinologist outside the cancer hospital to manage the changing issues of Hashimotos Thyroiditis; and a background with Hurthle Cell Carcinoma. The doctor I found is very good so far and really seems to listen to issues; and addresses ways to tweak medication to see if things improve. One of the recommendations was to see a Rheumatologist to see if there are any other issues influencing the situation. Apparently, there are other issues that often coexist with some types of thyroid disease. I am in the process of getting a work up to rule out other causes for some of my side effects….we’ll see.

Some of the issues that you describes are the same ones I am experiencing since I had my dose age of Levoxyl increased! I had been taking 50 mcg 5 days per week however after a recent death in my family was experiencing a lot of issues that appeared to be related to my thyroid due to stress, so the medication was increased to taking Levoxyl 6 days per week. At first, the new dose resulted in the issues I had been to decrease, however now the negative side effects have been increasing. The itching, burning mouth, heartburn, insomnia, fatigue, aches and pains, etc are increasing so it does not seem like I will be waiting 6 weeks to have new blood work before having my medication reduced….I will be calling doctor on Monday.

Definitely look at your medication and call your doctor to ask to have the dosage change immediately! One of the medications I was taking (Tirosint) gave me extreme negative side effects (I thought I was having a stroke!) so I had to stop all medication for a week or two and then start a new medication. A soon as I stopped the Tirosint, things improved dramatically. The philosophy of waiting 6 weeks for bloodwork is fine unless you experience extreme side effects. I have half of my thyroid so I was not at risk of not having any thyroid hormones, however having the doctor listen to the issues and have me stop taking medication was key to feeling better quickly.

In my opinion, a “quick fix” to get through the work day would be to call your doctor and insist on having the medication adjusted; look at what you are eating to see if the foods can influence the thyroid (Soy, walnuts, etc); and look at the history of blood tests numbers from when you felt well and see if your current thyroid numbers are close to that level. One of my Endocrinologists wanted my TSH to be as low as possible and prescribed higher doses of medication to achieve this, however that caused me to have extreme side effects. Tracking your numbers, your medication and your symptoms is very helpful for finding the right dose with minimal side effects, however you need to be proactive for changing issues due to medication. Good Luck!

When I was having a lot

By the way….a pharmacist told me that the pharmaceutical companies do not have to inform the pharmacy or the public if they change their formula for medication. They mentioned trends with people having issues with a medication for years and suddenly having an issue. I have a nephew with Asperger Syndrome who takes medication for ADHD and had negative side effects and ticks from his medication after the prescription had been refilled. His doctors researched the situation and it was determined that the medication had come from a different manufacturing plant which used a different “filler.” Same medication he always took, but from a different plant. H now has an alert at the pharmacy that he cannot have his medication from that particular plant. Maybe this is another area you can look into. Your pharmacy lists where the medication comes from and you can see if they changed plant locations.
Good Luck!