It started probably about a year ago. I was coughing up whitish yellow chunks and couldn't figure out what it was. After this happened numerous times, and several months later, I discovered that they were in fact, tonsil stones. This is when I first investigated my tonsils and discovered that my right tonsil was very enlarged, but there was no pain.
I asked the doctor about the enlarged tonsil and was advised that it was probably just allergies and not to worry about it.
A little while later, the right half of my uvula (I have a bifid uvula) began to really swell as well (still no pain). I inquired with a doctor again and again was advised that it was allergies.
After some time, my left tonsil and left half of my uvula became enlarged and swollen, at which point, I returned to the doctor again. I was asked if it was causing me pain, and I told them it wasn't. They said if it didn't cause pain, it wasn't something to worry about.
A few weeks later, I started feeling like I was choking on my tonsils/uvula and had this irritating feeling like I was trying to swallow something that couldn't be swallowed (presumably my very swollen glands). I went back to the doctor AGAIN, and was finally prescribed erythromycin. I took that for a week, and it didn't do anything but reduce the swelling just slightly. I returned to the doctor and was told again, that if it wasn't causing pain, there was nothing they could do.
So I went without seeing a doctor for an extended period of time after this. At the end of August, I travelled across the country where my tonsils and uvula blew up to the point where I couldn't breathe when I was laying down. I also had white junk all over my tonsils and was now experiencing pain (but not strep throat type pain). I went to the hospital and the doctor advised that I needed to have my tonsils removed. I told him that I couldn't do that because I was on vacation and there for a wedding. Blood work was done, and I was put on teva-clandimycine (sp?) as well as some steroids to reduce the swelling.
The drugs didn't work for the first 5 days, at which point, the swelling slightly reduced and the white stuff disappeared. However, I became violently ill with vomiting.
After a week of the drugs, and a week being back home, I could tell my throat still didn't feel right. I went back to the clinic and was told that since the swelling had gone down and I wasn't in a lot of pain (although some pain, especially when I yawned, and a feeling like something was stuck in my throat), there was nothing they could do.
A couple of weeks after this visit, the swelling returned and white stuff returned. I was urgently referred by the doctor to an ENT and was seen a week later. The ENT looked at my throat, told me that there was definitely something wrong, but he didn't know what, and asked me to come back in a couple of months. I persisted that something should be done, as this had been going on for an already extended period of time (8-10 months depending on when you consider it "started). He then begrudgingly gave me a prescription of penicillin and strongly recommended I get a physical done. He advised that he wanted to put me under "observation".
So I called around and found a doctor to get a physical done. Full blood work was completed, an x-ray (nothing) and an ultrasound (2 enlarged lymph nodes on the right side where I have the most swelling/pain), and a CT scan is currently forthcoming.
Blood work - T3 and T4 normal, but thyroid stimulation hormone low (0.17), and anaemic iron levels, everything else pretty normal. Negative on mumps, measles, HIV, syphilis, meningitis, mononucleosis, and some various others. Numerous throat swabs come back negative for strep and tonsillitis.
When I look at the back of my throat, my tonsils look ragged, swollen and red. I have lesions that are whitish in colour, particularly around my uvula and there is a lot of pain (which has developed since my hospital visit). If I were to describe the pain, I would say it feels like I have an open lesion in my throat (and it is particularly painful when I eat/drink anything acidic or too dry) and it feels very bruised. It does NOT feel like a regular sore throat - I can very specifically tell that the pain is coming from the tonsil/soft tissue around the tonsil itself, and it feels like an open wound. I have severe post-nasal drip to the point that I sometimes feel like I am drowning in it and it tastes/smells very foul. My sinuses otherwise seem clear (not stuffy or anything). I have had some ear pain, but that might be related to orthodontic work. When I wake up, my voice is very raspy and strange (lower pitch... sounds like I've smoked my entire life), but after showering and drinking water, it returns to normal. My sense of taste has completely changed (although, my doctor says this is a result of being on so many antibiotics), and my tongue has become "geographic".
My neck feels strange (the tonsils are firm and swollen to the touch), and I feel like there are little lumps... but it's hard for me to tell any more because I can't tell where my tonsil begins and ends. The right side of my neck is pretty tender.
I am a 26 yo female, never smoked and stopped drinking in 2009 (although I drank pretty heavily for almost every weekend from 2004-2008... hey, I was a University student!) My grandfather died of oesophageal cancer, and I have been previously diagnosed with hypothyroidism (was diagnosed back in 2001 and have been on Synthroid ever since, which is why the low TSH is strange since I have been on my current prescription for a long time). My doctor has reduced my thyroid prescription from .075 to .05 due to the recently discovered thyroid hormone change. My weight has been yo-yo'ing because I haven't been able to eat much due to throat pain, but when I have a day or so of pain relief (the pain waxes and wanes), I binge eat because I'm otherwise under-eating (yes, I realize this isn't good, but I am SO HUNGRY!). Anyway, I believe that's the only relevant information I have.
So... what the hell is wrong with me!? Do I have an infection from hell!? How do I get this fixed? I am waking up all night long from choking on my tonsils/post-nasal drip, I am not eating properly, I am exhausted and moody, my neck hurts, my throat hurts... I just feel miserable and it has been MONTHS! I have the CT scan booked for the 18th of this month, but I am worried they wont find anything. Then what? Drugs don't seem to fix it (fyi, I didn't take the penicillin because he didn't give it to me in good faith and I didn't want to interfere with test results). Do I just demand a biopsy? Do I demand a tonsillectomy?! ARGH! I am so frustrated!
You have had quite a time with these tonsils. When tonsils get huge, full of "crypts" like craters, produce white chunks of dried pus, and block your sinuses from draining, it is time to get them OUT. The CT scan should rule out any peritonsillar abcess under the tonsil pushing it out. Most likely, you have chronic tonsillitis with pus filled tonsils that never clear up. This is quite common and keeps your immune system working overtime. Until you get them out, you will probably suffer with these frequent bouts of sore throat, swelling, and not being able to eat. I would find a good ENT surgeon in your insurance network and get on the schedule.
Not to be a hypochondriac, but is there a possibility that I have carcinoma? I know my odds of lymphoma are really low (my lymphocytes are normal), but I of course can't help but wonder about the worst possible scenario.
I've been told that it isn't tonsillitis, but to be honest, I have zero faith in doctors now, so who knows. They all just dismiss my concerns, and shove me to the side (seriously... the ENT telling me to come back in 2 months... ***!? What difference is 2 months going to make? That we can say that I've been suffering needlessly for a full year instead of just 10 months? And all he does is a throat swab, and gives me a penicillin prescription because I was bawling my eyes out and begging him to help me. No scope, no scans, nothing. What an idiot!)
Unfortunately tonsils do sometimes develop carcinoma and less commonly lymphoma. I think the CT scan will help sort this out but the bottom line is that you need these out and the tissue examined for any evidence of malignancy. I would call the place where CT scan is scheduled and see if they can fit you in sooner, perhaps a cancellation spot. You can call every day if you want to check for an opening. I would ask for a tonsillectomy and try to get it done ASAP, since you are so miserable. You might want to consult with a head and neck surgeon since you didn't like this ENT. Good luck, and I hope everything turns out ok.
Last edited by ladybud; 10-12-2012 at 06:34 PM.
Reason: correct word
On Wednesday night (like... a day ago), I had this strange feeling in my throat, and so I went and spit into the sink and saw blood. I continued to spit up blood for a little bit, and then hoarked to get the rest out, and suddenly I felt this relief of pressure and my throat filled up with gunk. I started spitting out a lot of yellowish green, blood tinged mucus.
My guess = an abscess burst.
Unfortunately, this was literally less than 12 hours before my CT scan.
So I went and got the CT scan done this morning and felt pretty miserable all day. My throat doesn't hurt like it was hurting before and I can breathe better. However, now it feels raw and hyper-sensitive. ANYTHING I swallow (water, food, whatever) feels like it's acid being poured on an open wound. Advil is doing absolutely nothing for it and as a result, I haven't eaten anything all day.
My husband came home and said that enough was enough and dragged me to the hospital (JUST got back). What a mistake.
The doctor came in having already made a decision that there was nothing wrong with me. He had seen my CT scan (funny how the results were ready 12 hours later, but doctors can't follow-up on it for 2 weeks), and it showed numerous swollen lymph nodes, but that was it. One of my nodes was even nearing 3 cm!! (I think it was 2.8 or something).
Anyway, when he would let me get a word in edgewise and after he *jokingly* suggested that I should shoot myself in the head (***?!), I explained to him that I thought I had an abscess burst. He told me to go home and have a glass of wine in celebration. I explained that I couldn't swallow because I was in too much pain and that advil wasn't working, and he told me to keep taking advil. *sigh*
Out of pure frustration (after all these months, all this suffering, and all this waiting, a doctor trivializing my situation was making me want to completely freak out), I started bawling my eyes out. He then started asking me if anything else was going on - "is something else stressing you out? School? Work? Do you have a big exam coming up or something?" Seriously?!? I have a 3 cm lymph node (along with like... 6 other enlarged nodes), white **** all over my throat, an enormous uvula and tonsil, and it's all in my head?
Anyway, he just told me to gargle salt water, take advil and go home. He insisted that I don't go "doctor hopping" (I think he got the impression that this is what I've been doing because I've seen so many doctors due to not having a family doctor and going into walk-ins) and not to take any more antibiotics for risk of C. Difficile.
I ended up leaving the hospital sobbing, and my poor husband seething with anger, and apologetic for forcing me to go. Obviously that really didn't get me anywhere.
So hopefully someone here can answer my questions. Can an abscess cause all the issues I've been having? Wouldn't it be caused by an infection? If so, aren't antibiotics necessary, or will it just resolve on its own? Is it normal for the place the abscess existed to be extremely tender/sore after popping? How long does it take for that pain to go away?
Unfortunately, I live in Canada and doctor's here seem to have an incentive not to do anything unless you're dying. So getting a tonsillectomy is nearly impossible - I've had at least 4 doctors tell me no (one even admitted they don't do them because the doctors don't make enough money off of doing it), and I can't get it done unless a doctor approves it.
Like I said, the pain has changed and I feel like something has cleared from my throat (I can definitely breathe better). But I still have pain and a lot of white exudate on my tonsils (and some really raw spots that are very tender). What should I do? Just wait to see if it gets better, or should I push for SOMEONE to help me?
Oh, you have had some real doozies for Drs that haven't been sympathetic, helpful, or even listened to how much you were hurting. I would get a copy of your CT scan results and see how you do over the next week. An abcess is caused by infection, and peritonsillar abcesses make people really sick, as you have been, and no one has appreciated that! I think you did have an abcess burst from your description. I think you should be on antibiotics, but the abcess opening and draining is a good thing. I would gargle 3 times a day with warm salt water to rinse out the pus, and keep an eye on this in case it reforms. The nodes should resolve in 1-2 months. I can't believe this ER Dr, just dismissed a 3 cm node and made such crude jokes, as if this were a laughing matter. If you can see the ENT again, I would and take the CT scan report with you, and let him know you had an abcess behind that tonsil that burst, with blood and pus spewing out, and you need to know if he NOW will consider a tonsillectomy. I hope you get more serious help now that the problem seems to be clearer. Sometimes, the infection will clear up just by having the abcess drain, so I hope that happens for you!
Last edited by ladybud; 10-18-2012 at 10:59 PM.
I appreciate your quick response Lady! You're awesome.
My throat is still hurting like crazy, and I've noticed that my neck is visibly thicker (swollen). I have been gargling with salt water, but that doesn't seem to make things any better. In fact, all it does is make me cough a lot which REALLY hurts.
Still popping advil like it's candy.
I am at my wits end. No doctor seems to want to take me seriously. Pain killers aren't working any more, and they wont give me antibiotics out of fear for C. Difficile.
With that said, I had pushed the ENT to give me a prescription that I never filled for penicillin. I am debating getting it filled and taking it anyway. My last round of antibiotics was at the end of August... isn't that long enough?
I am getting desperate. All this pain and suffering and not having anyone care or listen to my concerns is exhausting and horrible. No joke, I am getting to the point where I want to 'accidentally' stab my own tonsil so that it becomes an emergency they have to deal with. I dunno... I sneezed with a fork in my mouth or something. I am literally losing my mind over this!
Do you think it's safe for me to take the penicillin? I can't seem to find a good waiting period between antibiotics listed online.
There really isn't any special waiting time between antibiotics. Penicillin is not one of the antibiotics that typically causes C Difficile. I understand your frustration with this whole thing. What you do with your prescription is entirely up to you, but I would just say if you decide to take it be sure to take it all (10 days usually) because if you quit halfway through because you feel better, the infection will likely just flare right back up. If you can at least talk to the ENT or see him again to make a plan for what to do now (?remove tonsils) that would be good. I don't where you are in Canada, but if Drs there won't remove tonsils, you might consider coming to the US if that is a possibility for you.
I went into a walk-in clinic to see a doctor that I've seen before who has been very vigilant and actually listens to me.
He had seen my blood results and my IGE is somewhere nearing 600 (normal is apparently between 3-90), so I am off the charts. This was his theory:
I am eating something that's causing an allergic reaction. This is causing swelling, which is therefore causing my tonsils to trap bacteria. This causes infection, and long-term infection causes abscesses.
So, he put me on Cefprozil 500mg 3x daily for 10 days. He said he wants to knock out anything that might be floating around in my system, ESPECIALLY since I am having surgery on my wrist on Wednesday. Then he wants me to go on a strict chicken/fish and rice diet for a couple of weeks. Basically he wants me to detox, see if that stops the swelling, and then slowly introduce new foods to see if something in particular is triggering it. He strongly believes I have an allergy to wheat (although I came out negative on the celiac test).
I am feeling a lot more hopeful today. Last night and this morning, I just bawled my eyes out because I was feeling so sorry for myself (combined with feeling like ****). I feel miserable, and to have doctors repeatedly ignore you is just awful. But this doctor gave me a little bit of hope that MAYBE something will change/improve.
With that said, I still want to get my tonsils out. The problem is, I am supposed to be moving to the other side of the country at the end of November. So the chances of me getting someone to agree to it, get an appointment and be recovered before then is really slim. I might try when I get to the new place and see if I can convince someone to do it.
I'm so glad you got some help! The new antibiotic is better than Penicillin, so that's good, and I have never heard of an IGE that high. His theory may be right! You can definitely have gluten allergy without celiac disease, and have negative tests. You might want to research allergenic foods, to get a list of the most common ones that give people trouble, and keep a food diary when you reintroduce foods back into your diet. An allergist may be helpful, as well as a functional medicine Dr who will test specific foods using IGG, similar to IGE, but picks up the allergies that cause the slow smoldering kinds of reactions. IGE is more for acute, severe, anaphylactic reactions. While you are on the chicken, fish, rice diet, I would stay away from any shellfish, as those are allergenic for some people.
I agree that there isn't enough time to do a tonsillectomy and recover prior to your move, but I do hope you find some good Drs in your new location, and that the antibiotics and avoiding allergens right now help you feel better! I am moving right now and it is exhausting. Hope you love your new place. PS Milk and dairy products are highly allergenic and seem to contribute to mucus production, so you might want to avoid that until your tonsillar swelling comes down. The soy, almond and rice milk are good once you get used to them. I'd start with rice milk as some people are allergic to soy and almonds as well.
Last edited by ladybud; 10-22-2012 at 11:56 AM.
Reason: added PS
So I had my surgery on Wednesday, and that was super rough on me... but thankfully, the antibiotics seem to be working. The white patches on the right tonsil have gone away and I'm not in any pain (from my throat). There is still a ton of mucus and some white spots though.
Interestingly, the anaesthesiologist had me under special surveillance because my tonsils were so swollen during the surgery. I had to have someone with me at all times during my recovery because they were worried that my airway was going to be blocked off. I asked if he could put his concerns in writing so I could convince a doctor to remove them, and when he asked which ENT I had seen, he knowingly rolled his eyes (like he knew that he was a sucky doctor). Unfortunately, he wouldn't write it down, but said he would talk to the ENT I was seen by (which I don't really want because I don't trust him).
Anyway... this has been a week from hell, but I am feeling pretty positive about the condition of my throat.
I went on a diet of no milk or wheat, and that didn't make a difference... the tonsils are back to being swollen and hurting.
My right tonsil is oozing mucus, and has white patches on it like before (it looks like raw skin, not exudate), and now I am noticing that said white patches are bleeding. It definitely hasn't gotten as bad as it was last time, but I can tell we're heading in that direction again.
Here's my theory:
I am almost 100% positive I have chronic cryptic tonsillitis. They are filling up with all kinds of material, getting infected and then causing me to be miserable. The heavy duty antibiotics are taking care of the infections, but it isn't fixing the root of the problem (my backed-up tonsils) so they just get infected again. Rinse... repeat.
I am scheduled to see a different ENT in January (I decided not to go back to my old one because I really didn't feel comfortable with him as a doctor), but January is too long to wait. I am 1. not ok with suffering as much as I did last time, and 2. am SUPPOSED to go overseas to work at the end of February. If I don't even see an ENT until January, my tonsillectomy (assuming I can convince the ENT to do it), wont be for probably another 4-6 months after that.
So I know this is bad, blah blah blah... but how do I make my throat get REALLY bad ASAP? I need to convince a doctor to do a tonsillectomy like... yesterday. They don't seem to want to do it unless you're on the brink of death. I want to make my throat super scary looking, and then I wont eat/drink for a couple of days and come in looking as haggard as possible.
It's a sad day when you have to strategize to get the help you need...
Also, I don't know if this is something to stress over (and I am trying not to because I have enough on my plate), I have recently developed a lump on the roof of my mouth. It's a small red lump (about the size of a dime), doesn't seem like there is pus or anything in it, pretty firm and doesn't really hurt (a little sensitive, but that's about it). I know I should have it looked at, but it's beginning to make me wonder about throat/mouth cancer. But if I had something like that, it would have shown up in blood results, or the antibiotics wouldn't alleviate my throat symptoms... right?
Oh Theresa, the saga continues. I would get in to see an ENT ASAP, so you can get this tonsillectomy done! He/she can check the palate bump and biopsy if felt needed at same time as tonillectomy. Cysts (benign) are common on the palate. Your tonsils sound awful now, don't think you need to make them worse, just need an understanding reasonable Dr. to do the right thing. Jan is too long to wait! You need to see someone now. Do you have urgent care centers in Canada? Maybe they would get you in to an ENT sooner than what you can do on your own. Good luck! It shouldn't be this hard to get what you need.
I called around today and convinced an ENT to see me on the 4th of Dec. I've realized that the sores on the tonsils are ulcers... which the 1 GP I see insists is being caused by allergies, but I am pretty convinced it's Cryptic Tonsillitis. It doesn't make sense that, if it was allergies, I partially respond to the antibiotics, and there doesn't seem to be anything triggering the 'allergic reaction'.
Regardless... I want them out no matter what the cause. They can't hurt if I don't have them.
I am in so much pain that I haven't been able to sleep in about 2 days. My right tonsil is bleeding and super raw. I am now getting pain radiating into my ear and head. Drinking water is like drinking acid. In fact, I would say the pain is similar to the burning/sharp/horrible pain you get after pouring rubbing alcohol on an open wound. It's awful
I've been eating popsicles, ice cream and soup, and once again, popping advils like they are candy. Unfortunately, the advils don't seem to do much.
I went back to the clinic... again, yesterday. I begged the doctor to give me something for the pain, and he relented and gave me a prescription for codeine. I took 2 30mg pills and felt absolutely no relief whatsoever. But exhaustion seemed to finally catch up with me and I slept last night. Not well... but some sleep is better than none.
So I've finally figured out how to get good photos of my throat...
Note that I have a bifid uvula and that only one side seems to be ridiculously swollen.
Believe it or not, despite my throat looking like this, when I went to the clinic yesterday, the doctor looked at my throat and said "it looks pretty normal". Umm... what?! I am not crazy right?? This looks totally ****** up... right!?
I saw another ENT today. He said that I look really inflamed and swollen, but that he was much more concerned about my lymph nodes. He is sending me to have a needle aspiration done ASAP. He said he wants to ensure that it's not the nodes causing the throat issues before he does anything.
Needle aspiration is booked for tomorrow, but I've seen yet another ENT and he booked me for a tonsillectomy in March. I have postponed all my plans because this has become too much of a problem that I simply can't ignore. My right tonsil bleeds all the time, and still hurts like acid being poured down my throat. The doctor told me that an adult tonsillectomy has been considered more painful than childbirth, but at this point, I just don't care. I have been so sick and miserable for way too long.