Please help me not be sick all the time
January 16, 2017 5:22 AM   Subscribe

I have a clusterfuck of ENT/asthma-type issues and I'm wondering if getting my tonsils removed would help. Please help.

So I've been diagnosed with LPR and I have chronic swelling in my throat. My tonsils and adenoids are huge. My adenoids look like boulders. I also have a chronic cough, which I feel is triggered in part by the constant flow of secretions from my sinuses and in another part by some kind of airway issue that has never been diagnosed. I take flovent to control the cough (a steroid inhaler) and it helps a lot, though no one can explain why.

Here's the thing. I've seen a slew of specialists, and none have been particularly helpful. I'm a young healthy looking female, for what it's worth. Allergist tested for allergies, and those were negative, so she told me my problem was behavioral. GI told me straight up that nothing was wrong, in spite of all the tests showing reflux. I went to the ENT Friday, who looked at my throat, remarked on how swollen it was, and told me to drink more water. He said the cough is pulmonary even though he's the one who diagnosed me with LPR. I take reflux medication (omeprazole) and try to control my diet (admittedly could be better about this) and, still, I've seen minimal improvement.

Here's my new problem. I'm literally always sick. I have never been sick this much in my life. I either get terrible sore throats with high-ish fevers, or sinus infections from hell. I have been sick five times since September. Most recently, I got a sinus infection and got an antibiotic after waiting ten goddamn days to get better. Took it, felt great, then two days after stopping it I'm sick again. Fever, runny nose. Nothing awful. But my god am I tired of this. It's getting to the point where I'm sick more than I'm healthy, and I'm only 23.

I'm going to a new ENT. I'm going to go to my primary again in the meantime because I'm concerned that the antibiotic I got wasn't strong enough. But, frankly, I'm sick and tired of my tonsils and adenoids. I wonder if they are so inflamed that they are just trapping anything that comes through and making me sick. So tell me about getting them out. Did it help? I'm not getting the classic recurrent strep infections but I'm damn sick and miserable regardless and I'm willing to try anything. I'm going to go to graduate school next year and I cannot possibly get sick this much while in school. I won't be able to pass my classes. I'm getting sick one a month.

Also, any tips on getting doctors to listen would be greatly appreciated, because the specialists I've seen have been entirely useless. I'm polite, I'm compliant, I'm as specific as I can be about how this is affecting my life. Still, they're useless, and this is a supposedly world class medical center. I'm going to leave this medical center and go to an independent practice because fuck this place. But what else can I do? Is there a better way to approach this?
posted by anonymous to Health & Fitness (15 answers total) 2 users marked this as a favorite
I'm not a doctor. But my son had his adenoids out last year when they did his ear tubes, and I could have easily had them take his tonsils too. As in, the ENT told me that it was my choice. I'm really surprised that these ENTs aren't throwing this at you as an elective surgery.

(If I were you I'd have them out ASAP. )
posted by checkitnice at 5:25 AM on January 16, 2017 [1 favorite]

For the reflux and LPR, have you checked out the Fast Tract Diet? Many, many people have had success with it. Maybe once the reflux is under control the swelling and irritation will reduce enough that you can get some relief.
posted by PorcineWithMe at 5:38 AM on January 16, 2017

As someone with constant tonsillitis and huge tonsils, I also asked about this. I was told that it was no longer recommended unless the tonsils were actually getting abscessed, since they were actually defending the throat and bronchial tubes from infection. They offered me the choice if I wanted it, and I declined.

By the way, I don't know how old you are, but I went through a similar round of getting sick all the time in my twenties. This was around the same time as the tonsil conversation. It turned out, in the end, that I had severe but symptomless endometriosis, which was obviously taxing my immune system. When they addressed that, the problem stopped. Now, I'm not saying you have endo, I'm just saying that the body is a complicated machine. Rule out other causes before you do something surgical.
posted by frumiousb at 5:55 AM on January 16, 2017

I bang on about this but my life changed when I sorted out my vitamin D levels. I used to get every cold going, always have a cough or a sore throat or something, and sneeze every. single. day. I went to a brilliant ENT consultant (unfortunately they vary a lot) who said my immune system wasn't fighting the inflamation in my sinuses cause I was super vit D deficient.

Nowadays I get maybe one cold per winter? two if I'm unlucky? Plus I get less depressed. Vitamin D is awesome.
posted by greenish at 6:06 AM on January 16, 2017 [3 favorites]

IANAD, although I am someone who has asthma, terrible sinuses and had GERD.

Two things you might (have your doctors) investigate are:

The connection between GERD and asthma, start here and here.

The other is something called Samter's triad, which is a link between asthma, sinus polyps/issues and aspirin (and other NSAID) sensitivity. Even if you do not have polyps (and unless your ENT specifically looked for them, you won't know, since they can grow deep in your sinuses), and even if you take aspirin without feeling like you're having a reaction, it's worth investigating.

If you are in Seattle, I can recommend both ENT and asthma specialists who will listen to you.
posted by Gorgik at 6:20 AM on January 16, 2017

also NAD, also someone who has seen one million doctors for asthma & sinus issues

1. I got a tonsillectomy many years ago when it was more common. It made a huge huge difference for me (it turned out that I...hadn't smelled anything before?!), but I still get sick a fair amount because

2. I have severe allergies and asthma, and I take Pulmicort to control my asthma - like Flovent, it's a corticosteroid, and also like Flovent it's an immunosuppressant - when my environmental triggers were better controlled, I got to take a lower dose of the Pulmicort, and I started getting sick less frequently, but still more often than most folks, until

3. seconding greenish,I got my Vitamin D levels tested and then took supplements accordingly, which has made a HUGE difference. I used to get 4-5 colds every winter (which turned into sinus infections, bronchitis, or pneumonia at least half the time). Last year I got one. I haven't gotten one this winter yet (fingers crossed).

- friend who had tonsils out as an adult has seen a lot of improvement in breathing/illness symptoms, some anecdata but there you go
- my allergist/asthma doctor in Chicago is amazing (and I never like doctors) so if you're here give me a holler
posted by goodbyewaffles at 7:16 AM on January 16, 2017 [1 favorite]

Most recently, I got a sinus infection and got an antibiotic after waiting ten goddamn days to get better. Took it, felt great, then two days after stopping it I'm sick again. Fever, runny nose. Nothing awful.

I'm not clear if you called them back about this or not. Definitely get back in touch with your physician when you relapse so soon after ceasing meds. If they make you feel like a bother about it, that's definitely a sign that you need a new doctor. I had the mother of all sinus infections (for me) and it took two courses of different antibiotics + steroids to knock out. If your doctor has a tendency to brush you off, I'm wondering if you are just not getting the initial infection fully cleared up.

I had my tonsils out as a kid due to recurrent strep throat/tonsillitis. I went from missing over 30 days of school each year to near perfect attendance. I don't know if it'd be helpful for your situation, or if it's much harder for an adult to bounce back from the surgery.

And Vitamin D has been awesome, just in case your doctor hasn't checked it out. I was originally put on a script beccausr mine were so low, but since my insurance at the time didn't cover it my PA had me take the largest OTC dose I could find. It also seemed to help with some menstral problems, in case you're dealing with that too.
posted by ghost phoneme at 7:26 AM on January 16, 2017 [1 favorite]

Is Symbicort available in the States? I've had far better luck with it than any other steroid.

Do you take your reflux medication properly? I was shocked to find I wasn't. Pharmacist had said that anytime was fine, but I was just at a gastroenterologist who said the optimum time is 1/2 hour before dinner. And when I made that change, it made a huge difference in the reflux symptoms.

Probiotics really help too. Align or Bio-k.

Anyways I'm banging on about reflux as when mine is bad, my asthma flares up and I get a short dry cough
posted by Ftsqg at 7:27 AM on January 16, 2017

Hi. If you are overweight, that may be a factor in your doctors not taking you seriously. This a NYT article with suggestions about how obese people can talk with doctors.
posted by SyraCarol at 7:39 AM on January 16, 2017

As a child, I had my tonsils and adenoids out to help with constant sore throat/tonsil issues. They do not recommend this much anymore as frumiousb recommended, especially for adults, but this was about 20 years ago. I do think it helped for a while, but then...

I went to a doctor recently for a wellness checkup and my doctor told me offhandedly that my tonsils and adenoids had grown back. Apparently this is a risk; if your doctor doesn't get all of them, they will grow back. So I feel like that was a wasted surgery and I wouldn't recommend it, especially as an adult. It was helpful to me, but in a salt-the-earth kind of way imo, giving my body time to recover from the constant coughing attacks and heal. I'd recommend instead following up with your doctors (getting new ones as needed) until they can give you a real diagnosis and/or a solution that stops you from being sick for several months.
posted by possibilityleft at 8:18 AM on January 16, 2017

I had my tonsils and adenoids out as a 24 year old woman, and while recovery was brutal, it was totally worth it. I had been getting strep a lot and it had escalated to requiring antibiotic shots; I also had a lot of sinus infections. In the ten years since then I think I've had strep once and no sinus infections. I should note that I also started taking vitamins (including D and cycling chelated zinc) and using a neti pot pretty religiously a few years after the surgery, so those could have helped too. Memail if you want more details about the procedure or the recovery; if I recall it was just my PCP who made the call and then we found someone who would do it.
posted by stellaluna at 9:19 AM on January 16, 2017

Removal of tonsils/adenoids was recommended for me as a kid to deal with recurrent ear infections/eustachian tube blockages. My tubes still get blocked and often (I'm in my 50s). On the other hand, my oldest daughter had her tonsils swell up so much she couldn't swallow her own saliva (mid 20s). We lost a Thanksgiving to being in the ED waiting for steroids to shrink them down so she could swallow. For her, removal was really the only choice.

That said, I wouldn't go for a tonsillectomy for any other reason than to deal with actual tonsil/adenoid issues, which you obviously have. Removing them to deal with possible secondary issues doesn't seem like it's worth it.
posted by tommasz at 12:32 PM on January 16, 2017

I don't know about tonsillectomies, but do you live somewhere with bad air pollution? (i.e. pretty much all cities.)

You could live somewhere that's overall good but downwind of a bad source. You can poke around on the EPA's enviromapper, if you're in the USA, but it's down this evening. Will your grad school be in a cleaner area?

Your doctor might or might not be allowed to speak freely to you about location and health. It's my experience that they won't. I don't know why.

As for tips on dealing with doctors - I dress up, full makeup, nicest jewelry and hair, that sort of thing. I try to go for "respectable matron," it's harder at 23. If it's a new doctor, I carefully write a page or two with relevant medical information, then go over it for layout and design to make it easy to read, show up with extra copies in a nice portfolio, and start handing them to anyone that seems to be gathering information. I read a lot of medical journals before going in, and summarize what I think is going on, or, why I think it is not something, in the report. When discussing who I am, I take care to tell them what relevant science background I have. While having a conversation, I ask them a question about something that was in the medical literature recently - within the past month, if possible - or compare American medical treatments to treatments in another country, when there's debate. (Good doctors are exited to talk about their field, bad doctors get pissy.) I am deeply conscious that they're scheduled for only ten minutes, they're behind schedule, and they're exhausted.

The doctors who don't like this? I find new ones.

I don't like having to "test" doctors like this, but I have really, really good ones now who have managed to solve some tricky problems. It took a long time.

I hear you on awful doctors. There's evidence that doctors absolutely do stereotype patients. I could tell you stories to make your hair curl but you probably have your own by now. All I can tell you is that there are good ones out there and they're worth finding.

Finally, surgery - surgery is a real bear and not something to jump into unless there are no other alternatives and you've got good confidence it will help. I'd check the air quality and the other good options in this thread first.
posted by arabelladragon at 7:05 PM on January 16, 2017

I had my tonsils out at 19 after two years of recurrent throat infections, constantly swollen tonsils, and general low-level cruddiness. I had a similar cycle going where I'd take an antibiotic, bounce back for a couple of weeks tops, maybe, and then get whacked again. I went ahead with the surgery because not only was I tired of feeling bad all the time, but I hated how often I was flash-bombing my whole system with antibiotics.

It was a horrible recovery - there's no sense in sugarcoating it - but it was without complications and it was ultimately well worth it. I've had strep once and a sinus infection once in the 11 years since. I still get mild seasonal allergies and colds sometimes, but it all feels well within the constraints of normal, which I'd never say about my condition pre-surgery. I'd go through the recovery 100 more times if I had to for the same result.

I am not a doctor, yes surgery is serious, but if you go to a new ENT who you like and he/she suggests the surgery in your particular case, definitely consider it.
posted by superfluousm at 11:56 AM on January 17, 2017

Doctors are reluctant to remove pharyngeal tonsils in adults because the procedure is much riskier due to the proximity of the tonsils to the brain's blood supply.

I had my tonsils removed after a peritonsillar abscess, one of the few indications for tonsillectomy in adults. I certainly wouldn't take the decision lightly. I had significant post-surgical bleeding and had to be rolled into the OR a second time to cauterize the wounds. The recovery was hell -- long and incredibly painful, despite heavy pain medication.

Though I had fewer sore throats after that, I can't say I was less often sick. That change didn't come until I dumped milk and most other dairy products and fixed my chronic vitamin D deficiency. What you're describing sounds like weak immunity and is typical of people with severe vitamin D deficiency. (Who knows if I would have had the peritonsillar abscess if I'd been vitamin-D replete?)

If you are interested in learning more, check out this talk by Michael Holick. He's not everybody's style (lots of dad jokes and ugly graphics in his powerpoint presentation) but he covers a lot of ground and it's pretty accessible. If you'd just rather cut to the part relevant to your complaint, here's a bookmark to the portion of the talk on immunity.

There are other excellent talks in the playlist I linked to. If you are curious, serious about fixing this and want to learn about dosing and safety, check out Reinhold Veith's talk as well.

Of course, it doesn't hurt to have a doctor with a clue about vitamin D. Most know little to nothing about it.

Good luck!
posted by rhombus at 12:52 PM on January 17, 2017

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