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Hypothyroidism symptoms worsening since starting rifampin
MAC & Bronchiectasis | Last Active: May 21 10:00am | Replies (6)Comment receiving replies
I can REALLY relate - when I had to take the meds daily (before Arikayce was available) it felt like "the life was draining out of me" - much like what you describe.
The only thing that puzzles me about your regimen is why you have been prescribed meds daily - this is usually reserved for more severe cases, as in where cavities are present or you are highly symptomatic.
Maybe the conversation you need to have with your doctors is whether you can reduce the frequency of dosage to 3X per week? Or perhaps add one of the newer drugs like Arikayce to your regimen to try to knock out the NTM?
Replies to "I can REALLY relate - when I had to take the meds daily (before Arikayce was..."
I do believe according to my CT results when FIRST diagnosed and before they knew it was MAC, I should have been not doing as well as I was. The pulmonologist seemed shocked I was “asymptomatic” as I had cavitations. Looking back, the back and physical pains I had were probably not from the physical work I was doing but maybe from injuries recurring ???
Hindsight….
Family doctor upped my thyroxin. Off to pick it up. He also suggested stepping back from work immediately(I can’t stand up 8.5 hours and til 10:30 at night without serious pain and worsening sleep situation).
If all these symptoms weren’t the same it sure would be easier to understand hat is coming from where.
I will ask my ID dr about amikaycin. I understand it’s generally added when things don’t work? As my cultures were susceptible to the Big 3 and amikacin, I assumed that protocol was big 3 alone until after the first CT at six month mark and then add if needed was the norm.
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My thyroid numbers have been off since starting the big 3. I retest in July to see if possibly the meds are impacting the numbers. With fatigue being a factor for both hypothyroidism and MAC/MAC treatment hard to know what’s what. I am wondering about the daily vs 3 day a week regime. I’ve been on the daily dosage since October but cleared as of February 2025. Is it possible to go down to 3x for the remaining time (I will bring this up with my Dr but next appointment won’t be until August). Thank you.