Weight loss; bronchiectasis, but MAC NEG.

Posted by pacathy @pacathy, Sep 5, 2023

I’ve gradually lost 13-14lbs since Christmas. Background-I was thought by the docs to have MAC based on CT’s, but cultures from bronch at Mayo in March were negative. I have mild bronchiectasis, mild asthma, chronic sinus inflammation and severe pollen allergies, all diagnosed this year.

I told PMD in May that I’d lost 8-10 and she said it wasn’t too much. It seems odd to me because I’m 72 and weight had been creeping up. Now it’s dropping despite similar/higher calorie diet. I’ve switched up to 2%milk, eat more nuts, raisins, milkshakes, etc. I’m writing today because I just returned from vacation and had indulged in Ben and Jerry’s, fried shrimp and fish, cinnamon rolls, and other good stuff. 😀 I expected a gain, but I’m down another pound. I’m still in normal BMI range, but at bottom now rather than top. I haven’t been at this weight since I quit marathoning several years ago. I have an appetite, but early satiety. I’ve had occasional reflux, but not in couple weeks.
Does this loss make sense since I don’t have an active infection?

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

liz440 | @liz440 | Sep 5, 2023

Do you frequently check your heart rate? When heart rate is up you burn more calories. Infections and other sicknesses can elevate your heart rate. I wear a fitbit tracker and can see my heart rate rise over time when I am getting sick. When I am better the heart rate goes back down.

pacathy | @pacathy | Sep 5, 2023

In reply to @liz440 "Do you frequently check your heart rate? When heart rate is up you burn more calories...." + (show)

Thanks. Good thought. I have an Apple watch and my resting rate is upper 50’s or low 60’s, normal for me.

Sue, Volunteer Mentor | @sueinmn | Sep 5, 2023

@pacathy If you haven't had you sputum tested since March, it might be time for a follow-up CT, another culture, and a check to see whether you have pseudomonas, aspergillus or another infection - especially if your sinuses are involved.
That probably means a consult with either Mayo or a local pulmonologist, not your PCP.
Have you let Mayo know about your continued weight loss? Do you have any other symptoms?
Sue

pacathy | @pacathy | Sep 6, 2023

Thank you, Sue. I was pretty shocked yesterday after all the high fat food. 😀 I had gotten my weight stabilized for a couple months with dietary changes. I don’t bring up sputum despite airway clearance.
I saw Mayo for a diagnosis since pulmonary doc I’d seen initially was on emergency leave. I have a new doc in Penn’s bronchiectasis clinic and will point it out to him at next visit. If he blows me off ( unlikely I think), I’ll contact Mayo again.

Sue, Volunteer Mentor | @sueinmn | Sep 6, 2023

In reply to @pacathy "Thank you, Sue. I was pretty shocked yesterday after all the high fat food. 😀 I..." + (show)

Cathy, Sometimes it is a good idea to call before the visit and initiate sputum collection and perhaps a CT in advance of your visit, so he knows what you are dealing with when you arrive. Remember sputum culture results take 6-8 weeks to get back.
Sue

Rick | @rstel7272 | Sep 6, 2023

Oh yes it makes sense. If you visit NJH they will have you meet with a nutritionist as part of the therapy and they will recommend the style of eating you described and then some. I am 6' and weighed 147 for 50 years. In the last 5 years I have went 147-128-170-147-165. My first round of weight loss was MAC, the second aspergillus. I eat a lot pasta, pot roast and desserts.

pacathy | @pacathy | Sep 6, 2023

In reply to @sueinmn "Cathy, Sometimes it is a good idea to call before the visit and initiate sputum collection..." + (show)

Good thoughts, Sue. He gave me a prn order and specimen cup for sputum culture and I’ll message before appointment or try to get in earlier if weight continues to drop.

I really appreciate the validation that it’s a concern. I was surprised by PMD’s response.

In the meantime, I’ll try to enjoy the milkshakes, chocolate covered almonds, etc. that I’d avoided for years. 😀

suzyqueue | @suzyqueue | Sep 7, 2023

Have you had your thyroid checked? I have Graves hyperthyroidism on top of MAC. My first symptom of my thyroid acting up is weight loss. Its worth having it checked if you haven't. Just an idea....

debbie1971 | @debbie1971 | Sep 8, 2023

Have you discussed the symptom of early satiety with your physician? That, along with your unexplained weight loss, could be concerning. Might not be related to your respiratory issues at all. I wish you the best.

Please sign in or register to post a reply.