(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

@jkiemen Jo Ann, I have been reading over some of your past posts and came across this one. You stated that your dr said if he/she could not control your mac that he would refer you to NJH. I would also recommend Mayo Clinic. Do you think that time has come?

@windwalker Hi Terri, has anyone taking a Statin for high cholesterol found it no longer works well while taking the Big 3?
I have now had 4 lipid panel tests showing the Statin no longer works well -- it seems to be the Rifampin does it. Also my thyroid meds (Synthroid) don't work well anymore. Anyone else? What did you do?

Hi! When I took the big 3... I would wake up around 5:am and take my Synthroid and it worked well. It was 3 hours away from the big 3. But I am not sure the time you’re taking yours.

@anniepie For some resin the Big 3 interferes with thyroid medication. Perhaps your doctor will increase the amount you are on. As for cholesterol meds, since those increase liver enzymes, they pose a problem when taken with the Big 3. I was taken off the cholesterol meds (or at least given the choice) since I needed the Big 3 more. (irene5)

Another thought is that MAC itself interferes with your thyroid. I remembered that before I was diagnosed, my doctor commented on how I had stopped taking my thyroid medication. I told her I hadn’t missed a day since I was 18! That same year I was diagnosed with MAC, and my thyroid has had to be monitored carefully ever since.

Hi, I have been diagnosed with Mac and some of his friends 🙂 6 years ago and I am on the same dose of synthroid and never had a problem. Some of us can’t use the generic and need the real thing! Also it’s very important to talk to your doctor because if your thyroid is not functioning! You are not going to function also!! All the best 🙂

@irene5 @america Thanks for your replies and your, so much. My doctors have increased the thyroid meds a lot but T3 and T4 ihave slipped down again and TSH gone way up. The same has happened with my cholesterol levels, even while on Statins, and even with Ezitimibe instead. Rifampin uses the same pathways in the body and can reduce all thyroid hormones and increase cholesterol for people who are susceptible because their livers don't clear drugs well.
Thanks for that info about MAC/MAI effects on thyroid Irene -- I didn't know that!
Has anyone had Rifabutin instead of Rifampin? Or changed from Rifampin to Rifabutin? I heard it had more side effects -- is that true? (Rifabutin interacts less with thyroid hormone).

@irene5@america I was changed from rifampin to rifabutin-I did not tolerate it-got achy and feverish. Went off it for awhile and tried again-same issue.

Thanks @rmason @irene5 @america for your help. I saw the pulmonologist at the Mycobacterium Clinic in the hospital today. They won't change me to Rifabutin because my damaged liver cannot take it.

They said I will have to just accept what the Rifampin is doing to my thyroid and cholesterol. That's hard because I'm so hypothyroid now I need to sleep almost all day and all night, every day, every month. Like Rip Van Winkle! But I'm not sure how I can accept that for another year or two years. Next week I will see a psychologist for some help with that.

(@america I take my Levothyroxine 8 to 10 hours apart from the Rifampin -- in the morning. I always take the TB meds/Big3 at night, as advised by my pulmonologist. Rifampin doesn't have any big problems for some people with thyroid disease but for others it does. Unfortunately it does with me).

Have you considered trying supplements for the cholesterol and thyroid to see if that will help at all?