1. < MAC & Bronchiectasis

Hypothyroidism symptoms worsening since starting rifampin

Posted by traceyk @traceyk, May 19 10:32am

I am trying to figure out if my worsening fatigue and insane muscle weakness (only started MAC treatment in mid January) is caused mostly by Rifampin affecting my thyroid medication.
I appeared to be mostly asymptomatic of MAC disease. It was found during a CT for lung cancer following my bout with breast cancer. I had pneumonia last year February and again last year August which delayed beginning my treatment. I honestly thought if I could withstand the side effects of the Big 3, I would manage to be one of the lucky ones in our group.
Now, I just gave notice to quit my job. I sleep whenever I have a day off all day and night. I no longer walk my dog, enjoy my yard, rarely cook and do as little housekeeping as possible to get by. I have gained fat and more fat. (I can see it visibly through my skin.)
Before beginning treatment, I was an avid gardener, outdoorsy sort and very social. I was in what appeared to be good shape especially for someone having had cancer twice. (Melanoma and breast cancer/bilateral mastectomy). I wanted to start dragon boating this spring too. That seems like such a bizarre thought now considering I’ve not enough energy to get in my car and drive to get groceries.
My Doctor increased my thyroid meds once (but it is still not enough?) I worry it is never going to get better. Has anyone had their synthroid increased over and over while on the Big 3? Did things improve? I’m worried I am gonna begin to not only atrophy here but actually start to break. My left shoulder barely moves anymore and squatting is a thing I avoid at all costs. Thank god I was flexible in my former life or I’d not be getting any shoes on!

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Mentor
Sue, Volunteer Mentor | @sueinmn | May 19 1:30pm

@traceyk Hmm, I wonder if you are one of those people for whom Rifampin cannot be part of your treatment?
Are you seeing either a pulmonologist or an infectious disease doc who specializes in treating MAC? If not, perhaps with your complicated history you need to seek someone out.

REPLY
1 reply
irenea8 | @irenea8 | May 19 2:48pm

What is the actual value of the treatment in light of your side effects?? Especially if you were asymtomatic with your MAC.

REPLY
traceyk | @traceyk | May 20 9:45am
In reply to @sueinmn "@traceyk Hmm, I wonder if you are one of those people for whom Rifampin cannot be..." + (show)
@sueinmn

@traceyk Hmm, I wonder if you are one of those people for whom Rifampin cannot be part of your treatment?
Are you seeing either a pulmonologist or an infectious disease doc who specializes in treating MAC? If not, perhaps with your complicated history you need to seek someone out.

Jump to this post

I’ll meet with my family doctor today to discuss upping my thyroid medicine. I have to be very clear though that these symptoms of hypothyroidism have become as bad as they are. Anyone else have a problem looking and sounding all chipper the day you meet with the dr?
I will have an appointment either this Thursday or next with my infectious disease doctor. He is the top doc around my province and works in conjunction with my pulmonologist who did my bronchoscopy (also an A+ dr.) and discovered the MAC. He treated me for the lung infection that landed me in the hospital and on IV antibiotics from August to October last year.
Sorry… When I say I was asymptomatic I should be saying I have no bronchiectasis. I did have aches, pains and fatigue but generally I had way more energy than I do now. (I could at least walk daily with my puppy. Now my hundred pound year old must be wondering what is going on… )
My CT scan showed my MAC had begun to worsen the same time my infection was clearing up, and my results showing that my cultures we’re susceptible to the Big 3 were back, so it was decided I had to start on daily doses of all three. My six month mark for CT is in July.
Praying this downward trend is all caused by the interaction of Rifampin with my Thyroxin. The alternate scenario is these drugs aren’t working. My latest blood tests shows thyroid still isn’t functioning normally and I have the numbness on face etc that I had 29 years ago when I first was diagnosed with hypothyroidism so i am pretty confident it’s the issue….
I also looked back through my posts here and on NTM site and realized that I did have these similar symptoms for MAC too. I guess it means I started to improve in between beginning of treatment and these thyroid problems after all —Enough that I forgot how things were right before I started treatment. I do remember now wondering why I still was waiting for treatment cause I had started feeling more MAC symptoms.
It’s all coming around now.

I don’t like this being like a broken record circling around and around. Seems as though one illness and treatment after another. I imagined a much more jovial forties and fifties than I have had haha.

REPLY
1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | May 20 12:33pm
In reply to @traceyk "I’ll meet with my family doctor today to discuss upping my thyroid medicine. I have to..." + (show)
@traceyk

I’ll meet with my family doctor today to discuss upping my thyroid medicine. I have to be very clear though that these symptoms of hypothyroidism have become as bad as they are. Anyone else have a problem looking and sounding all chipper the day you meet with the dr?
I will have an appointment either this Thursday or next with my infectious disease doctor. He is the top doc around my province and works in conjunction with my pulmonologist who did my bronchoscopy (also an A+ dr.) and discovered the MAC. He treated me for the lung infection that landed me in the hospital and on IV antibiotics from August to October last year.
Sorry… When I say I was asymptomatic I should be saying I have no bronchiectasis. I did have aches, pains and fatigue but generally I had way more energy than I do now. (I could at least walk daily with my puppy. Now my hundred pound year old must be wondering what is going on… )
My CT scan showed my MAC had begun to worsen the same time my infection was clearing up, and my results showing that my cultures we’re susceptible to the Big 3 were back, so it was decided I had to start on daily doses of all three. My six month mark for CT is in July.
Praying this downward trend is all caused by the interaction of Rifampin with my Thyroxin. The alternate scenario is these drugs aren’t working. My latest blood tests shows thyroid still isn’t functioning normally and I have the numbness on face etc that I had 29 years ago when I first was diagnosed with hypothyroidism so i am pretty confident it’s the issue….
I also looked back through my posts here and on NTM site and realized that I did have these similar symptoms for MAC too. I guess it means I started to improve in between beginning of treatment and these thyroid problems after all —Enough that I forgot how things were right before I started treatment. I do remember now wondering why I still was waiting for treatment cause I had started feeling more MAC symptoms.
It’s all coming around now.

I don’t like this being like a broken record circling around and around. Seems as though one illness and treatment after another. I imagined a much more jovial forties and fifties than I have had haha.

Jump to this post

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?

REPLY
2 replies
rmoore901 | @rmoore901 | May 21 9:10am
In reply to @sueinmn "I can REALLY relate - when I had to take the meds daily (before Arikayce was..." + (show)
@sueinmn

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?

Jump to this post

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.

REPLY
traceyk | @traceyk | May 21 10:00am
In reply to @sueinmn "I can REALLY relate - when I had to take the meds daily (before Arikayce was..." + (show)
@sueinmn

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?

Jump to this post

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.

REPLY
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