So, I'm not one to talk about my personal life on twitter, but there was next to nothing on the internet about my experiences, conditions, or symptoms. So maybe this will help someone else with graves taking methimazole and suddly have sore gums throat bad taste neutropenia

I think I got all the searchable key words in there... anyways. I was recently diagnosed with Graves disease and hyperthyroidism. It sucks big time. Something I'm finding out is that if ANYTHING is wrong with you, it's possibly because of your graves.

For my graves I was prescribed methimazole to help regulate my hyperthyroid. First I was prescribed 3x the normal amount. 2 weeks later some more blood labs were done and I was dropped to 2x because it was throwing my liver out of wack.

It's been 2 weeks on this new dose and everything seems fine. Last Sunday something weird was happening. Water tasted.... BAD. I figured we needed to change our filter, but that wasn't the case, and no one else had an issue with the water.

Later that night, the gums on my right side were a bit sore. I have a long history of sensitive gums, so this wasn't too alarming. The next day it was much worse though. Another weird thing was that my soup tasted off.

Tuesday was the first day that I busted out my giant ice pack. I just put it on my pillow and laid my head on it. That's how much my face was starting to hurt. I wasn't eating solid food anymore because of it either. I hardly slept any tuesday night because of the pain.

Wednesday I woke up at 2am with my mouth hurting worse than ever, my jaw/throat/neck sore, and slight pressure in my ears. I checked my temp. I have a fever. Great. I'm fucking sick.

I figured it was a sinuses or strep. I set up an appt with a local urgent care for 6pm the next day (their next available appt) I wouldn't make it. At about 11pm my mouth throat and ears had gotten so bad I'd ended up in the ER.

Being in the ER during a pandemic is not something I would do if I had any other choice. It had a 4 hour wait. I saw two dr's who bounced ideas off eachother. Strep, Sinus Infection, Cold, Gingivitis, Abcessed Tooth. These were their options. They prescribed me antibiotics.

They said it was most likely strep or a sinus infection. If it was, these antibiotics would get rid of it. If my gums were still bothering me after the antibiotics were done (7 days) see my dentist. They gave me a covid test on the way out that came back negative.

Also gave me some prescription strength mouth wash WHICH I ACCIDENTALLY SPLASHED INTO MY EYE THE NEXT DAY LIKE MY WEEK WASN'T ALREADY BAD ENOUGH. On the advice of poison control I took a shower at 11pm for 1 minutes where I just forced myself to rapidly blink my eyes under water.

BUT THAT DOESN'T HAVE TO DO WITH MY ACTUAL STORY HERE, I just really can't believe I splashed that into my eyes and potentially almost lost my sight because I'm a peak femmebo ANYWAYS. Back to the story. LEFT ER. GOT ANITBIOTICS. TOOK THEM. CONTINUE

Thursday felt worse than the day I went to the ER. Friday too. Saturday my ears and throat finally started to feel better. Sunday they were still better. Gums were still horrible though. I couldn't eat because the pain and taste. Also my fever had not gone down. Only up. 101.5

I went to the local urgent care. By the time I was there my fever was better. They ALSO didn't know what the fuck was wrong with me, or how to begin helping me. They didn't think it was any of the stuff the ER dr's did though. Before I left they drew some blood to do some labs.

I left feeling pretty crummy. I (still) have not eaten solid food in days. I don't know what's wrong with me. No one seems to. ALL I WANT. Is to eat. But anything I put in my mouth tastes rancid and triggers me to gag it right back up. Water tastes bad too. Staying hydrated sucks

this morning I got a call about my lresults. The person I was speaking to said that my neutrophils, a type of white blood cell, was almost existent. He said I needed to see a dr. ASAP. This was honestly the best bad news I've ever gotten. I was scared he'd say it was all normal

A low number of neutrophils can lead to Neutropenia. What are the symptoms of Neutropenia? EVERYTHING I'VE BEEN EXPERIENCING.

What can cause Neutropenia? A lot of issues that didn't seem to pertain to me... and medications.... what medications? 10 medications. one of them being......... METHIMAZOLE. The medication I've been taking for my graves.

Ah... yeah... that sounds exactly like the bullshit I've been suffering for a week. I told four doctors that I had graves and I was taking methimazole. None of them thought of it. One specifically told me that my symptoms shouldn't have anything to do with my graves.

I took this information THAT I FOUND MYSELF to my doctor today. Do I know if he would have thought of it with out me bringing it up? No idea. I *AM* confident that if we hadn't done bloodwork for my WBC it never would have crossed anyones mind though.

So now we're pretty confident in knowing what I have. Everything still tastes bad. I still can't eat. I've lost 9lbs in 3 days but it's progress. My doctor, my endo and the hematologist I all spoke to today said they have NEVER seen this before in person. Only read about in books

Apparently now that I can't take methimazole my options for graves treatment are pretty limited. Sounds like iodine radiation treatment, or having surgery to have my thyroid removed completely. I'm not looking forward to it!!!

my advice is to not be pushed over by doctors. It takes a lot of time and energy to get infront of them. Don't let them blow you off. Don't scare yourself while googling, but DO look up what can be causing your symptoms. Bring them up to the doc.

If they say "it's definently not that" ask them why. Ask them if there is a blood or swab test you can do to rule it out. If they deny, ask them to put it in your chart. ALSO GET BLOOD TESTS DONE. Test your horemones, test your blood cells, test your vitamin levels.

They might hesitate for whatever reasons they have, and they are swamped, but the answers you're both looking for are in these tests. Ask for a swab. Ask for a covid test. Ask for a second or thrid opinion. I can't stress that I talked to 4 doctors and none of them found this.

my doctor today said if he had seen me yesterday, knowing what he knows now, he would have immediately sent me to the hospital. I now have to check my temp every hour and if it goes over 100 I have to go to the emergency room.

and sorry for all the typos in these tweets. You really can't imagine how tired and hungry I am, lol.

Oh also I'm just going to add that another thing I have is called agranulocytosis so if anyone on twitter searches that maybe this thread will show up