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Fat Thigh-Roid Woes: Russian Roulette of Medication

Post Published: 02 July 2010
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Category: Column, Fat Thigh Roid Woes, Graves Disease Symptoms Column
This post currently has 34 responses. Leave a comment

Methimazole – Generic of Tapazole, used to treat hyperthyroidism.  Listed side effects are – skin rash, itching, abnormal hair loss, upset stomach, vomiting, loss of taste, abnormal sensations (tingling, prickling, burning, tightness, and pulling), swelling, joint and muscle pain, drowsiness, dizziness, decreased white blood cells, decreased platelets AND what else can we list?

According to numerous sites, it’s well tolerated and side effects mess up about 3 out of every 100 patients.  Cool.

Propylthiouracil – aka PTU – The major side effect they warn you about is a decrease in white blood cells in the blood, and if you get a sore throat and fever – go straight to the hospital. Also, the FDA issued a warning about liver failure as well.  Rash, itching, all that good stuff that goes along with Methimazole can also be a side effect from the PTU.

I’m not a doc, nor do I sit for hours researching these drugs beyond the controversy and side effects – but what I do know is that I’ve taken both of them.

When I was first diagnosed with Graves, my doctor decided to put me on a heavy dose of Methimazole.  I can’t remember the exact dosage, but it was enough for her to try and blast my body so my heart can calm down.  She didn’t prescribe beta blockers to go along with it.  I know that a lot of you are helped by these medications, and if you are – then fantastic.  Glad it’s working for you.  However, for myself, Methimazole should be called “Uncontrollable Fire Twat”.

I started the drug a few weeks before I took a trip up to Portland to visit friends, and things seemed to be going swimmingly well for a bit – my heart had calmed down, I wasn’t as shaky, and I thought I saw the light through the trees.  Nah….two days before I was due to come home, I started to get a horrible rash on my naughty bits, stomach, and all the way up my arms.

Why can’t I just go on vacation and enjoy a vacation all the way through, without some sort of bullshit looming?  If it’s not an allergic reaction, it’s my fuckin’ rag on Day 1 of a beach trip.  If it’s not my period, it’s ‘roid city in Vegas.  If it’s not ‘roid city, it’s appendicitis two days before much anticipated summer school starts.  WHY IS IT ALWAYS SOMETHING??

I didn’t put two and two together until I got home and saw that my feet had not only decided to join in on the rash, but swelled to resemble flat and doughy pancakes complete with five plump sausage toes squeezing out from the top of each.  So yeah, I guess I had to come off this shit.  A beautiful sight to behold….me walking like I’m having a seizure, trying to scrape my legs so my nether regions will find some relief; my arms ablaze, and my feet don’t BEND at the ankles.

I called the asshole doctor, and she goes “come off the PTU”.  That whore didn’t even remember which drug she put me on.  I decided to come off, cleanse, and just not touch any of this crap for as long as possible.  I read if you’re allergic to one, you’re most likely allergic to the other.  I’ve also read that the rash is actually not an allergy, but your body processing the thyroid hormone being dumped into your blood.  Also, I heard that Elvis is still fuckin’ alive somewhere, so really, any theory is UP FOR GRABS.

By the time I started PTU, it was a year later and I was desperately trying to avoid RAI.  PTU is the less favored drug over Methimazole – it’s older, and the side effects can be more dangerous from what I’m reading.  Okay, well, since I already had “Fire Poon, Ass, and Feet” from Methimazole – unless it makes me jump out of a plane without a chute, how dangerous can it be??

I started taking PTU in August/September of last year, along with some beta blockers.  Again, I was taunted with the illusion of getting better for a few months, and my new endo was a lot more careful about monitoring me.  He ran a liver test every time I went in for a blood test.  The first go around seemed ok, but towards the holidays I was given the news that my liver was shriveling faster than Drunk Uncle Bob’s.  The medication hadn’t even made my thyroid levels normal yet, because according to my endo – I was still very hyper, just slightly less than before.  Great, so I can still stuff cake and excess calories into my face, but lay off the liquor?  F THAT.

Some of my other symptoms you ask?  I started to get a rash on my hands.  A small rash that I couldn’t do anything about – except avoid shaking hands, OR I’d try to shake hands with those I loathe.  I knew that it wasn’t contagious, but shit, they didn’t.

I also got insanely painful muscle cramps every stinking day, and not from doing anything extraordinary.  “How dare you try to grab a cup from the cupboard?!!” My back would scream, tense up, and cramp for minutes at a time.  The most painful muscle cramps I have ever experienced, and they took me down hard.  Most of the day, you could find me holding my arm, pale and sweaty anytime I had to grab something in the passenger seat of my car.

So, I had to end my torrid affair with PTU as well.  What’s next?  Oh, you want me to swallow a radioactive pill?  Sure.  Let’s do this!

Why isn’t there something better out there for us?  Why does the anti-thyroid pill treatment seem like a game of Russian Roulette?  I don’t know if I’m being biased, but I feel like most people I talk to about these drugs have more negative experiences than positive.

Is there anyone out there that wants to rave about Tapazole or PTU?  Or, anyone out there that wouldn’t wish them on their worst enemy?

I’m very curious to know if my case is rare, or more common than one would like to imagine.

Nicole Wells

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34 Responses to “Fat Thigh-Roid Woes: Russian Roulette of Medication

  1. What a fuckfest of horrific side effects! So sorry you had to go through this, Nicole and thank you very much for your informative post. I hope you get lots of feedback as I’d be interested to hear what other people have to say. What’s your current state of thyroid care, considering you don’t tolerate most of the meds? Hope you find some relief really soon, including the other topic you discussed (did you get my forwarded email?).

    Have a great weekend!

    Love,

    Sarah (who is off out for some soju, her new favourite alcoholic drink!)

  2. Nicole Wells says:

    Hi Sarah! I had to get the radioactive iodine done because I couldn’t tolerate any of the meds. That was fun stuff too!

    Yes, thank you for the email, sorry I haven’t responded. I’ve been swamped with school stuff! Hope you have a great weekend too!

  3. Amanda says:

    Thank you for writing this. I am currently newly “hyper” and my regular doc said “the endo will just give you methimazole and you will be fine”. When she said this I felt relieved. Of course I couldn’t leave it at that, and have been reading everything I can get my hands on, and nothing points to her statement. Maybe she believes that, and good for her for making it easy on herself. I will try not to call methimazole what you did during my appointment, but who knows… my brains are mush. 🙂

  4. Krist Moll says:

    So far I have switched back and forth between both and fortunately the only side effects I have had is the itchiness. Which if I can keep myself from scratching it wouldn’t be as bad, but when I get an itch and then scratch, my skin turns into a welped up mess! I am going tonight to get bloodwork with my first hepatic panel done though, so hopefully my liver is doing ok. I was just wondering how you feel since the RAI, Nicole? I am hoping my hyper state will come back down to normal levels, I have a 6mo old and a 2yr old, so my hormones are all screwed up. But anyway, I am hoping within the next 6 months they will normalize and that won’t have to be an option. Fortunately I found a great endo who doesn’t just push stuff on me, so he said we can see how things go if thats what I want. So I was just wondering, how you feel after the RAI? I havn’t read too far back so if you’ve previously written about it my apologies.

  5. Hey Nicole,

    I read about the RAI in this column, but I guess I was just wondering what meds you are on now. From what I understand, the radioactive iodine destroys your thyroid’s function so that you then have to take the drugs you would need to take for hypothyroidism, although I’m not sure that is the care with you, or is it?

    Love,

    Sarah

  6. Nicole Wells says:

    Hi Amanda,

    I forgot to mention that you’re not supposed to be on either drug for more than 18 months. About 20 – 30% of people go into remission using Tapazole or PTU, so…yeah, I don’t consider it very successful in the long run, it’s almost like delaying the inevitable. I met a girl who used Methimazole for 18 months, came off, was fine for a bit then the hyper symptoms started all over again.

    Do you have Graves or are you simply hyperthyroid? I don’t know the success rate for people who are hyper, without Graves. It’s worth looking into though.

    I think it also depends on how severe your disease is. Mine was really awful, and the endos I visited described me having “severe Graves”. However, I’ve never heard of “not so severe Graves” so who the hell knows?

    Good luck at your doc appointment, and I hope you take a long list of questions that demand answers! : )

  7. Nicole Wells says:

    Hi Krist M,

    Well, to really get into detail about how I feel about RAI, I’d probably be typing for days and days.

    I didn’t want to do it. I didn’t care how much the doctors told me how safe it was, and how they’ve been using it as treatment for decades, blah blah blah. However, I had no other choice because I wasn’t a good candidate for surgery cause my levels were not normal, and my heart was too fast for a surgeon to dare touch me. IF I could have done the surgery, I would’ve opted for that – but again, you have to make sure you do your research on the surgeon and make sure they can nearly do it in their sleep.

    I am going to write a column about my RAI experience, but to sum up – I’ve gained weight (which granted, a lot of that weight gain is muscle I lost while super hyper) and I think my immune system has taken a hit. I was tired for awhile months after, and I’m now hypo – due to go in for another blood test in a few weeks to see where I’m at. I’m on 60mg of Armour, and that seems to be working okay…but I think my body needs to take a lot of time to bounce back from the mess it was in. Also, my endo wanted to start me out on a slow dose to make sure I don’t go hyper again.

    So far, the RAI was a good choice, but really – I had no other choice. It’s like, the doctors were basically asking me which gun I wanted to be shot with. Everyone has to weigh the lesser of two evils really.

    If you’re itching with your meds and getting welts – I had the same experience, and I suggest checking into that soon with your docs. I was getting streaks of welts from the Methimazole, and when I came off the rash took 1 MONTH TO CLEAR UP.

    Good luck, and I wish you the best with whatever decision you make!

  8. Nicole Wells says:

    Hey Sarah,

    Yes, I went hypo about 3 months after the RAI and I’m on 60mg of Armour thyroid now. I’m due to go in for a blood test in a few weeks to see where I’m at now. I’m still a fuckin’ fat ass, but I don’t know if this is my new destiny or what. It blows, but it’s better than where I was with being hyper, so for that I’m grateful.

  9. Nicole, that’s what I figured because it seems to be the case for almost all hyperthyroid patients that after treatment they turn hyper. I once read that RAI is far more common and popular in the US than Europe, which I thought was quite interesting. My cleaning lady’s colleague was recently diagnosed with Hashi’s, but she’s hyper right now so is on one of the drugs you mentioned. Luckily for her, she is doing well on it, but I mentioned to her that there is a chance she will at some point go hypo – I also read that many people tend to be hyper at the beginning of Hashi’s – not sure how true that is though. I think you may be too hard on yourself about your weight. I know how it feels to put on all that weight though, but I want you to know that I think you look pretty stunning on some of your photos. For me, being skinny is no longer the be all and end all, but I understand anyone’s frustration with weight fluctuations as I have been through that too. The point you make about muscle and weight gain is also important as it’s better to judge your body on how you are feeling rather than a number on the scales. I think I weigh so much more than what most people would guess because of my body structure and I know I’m not the only one.

    Love,

    Sarah

  10. Nicole Wells says:

    Thanks Sarah! Unfortunately, I have no recent photos of myself..hahaha. I move out of the frame when someone tries to snap a shot.

    Yes, the preferred method of treatment is RAI in the US, which is why it’s harder to find a good surgeon here. It’s more cost effective to take the pill, and less invasive – but still, I hate that it needs to be an option. My thyroid isn’t the problem, my immune system is – therefore, we need to find a decent cure for autoimmune disease.

  11. Nicole, thanks so much for sharing more of your story. While I’ve not had to deal with these issues, I truly appreciate having the opportunity learning about what other thyroid patients are dealing with.

    You rock, thysistah!

  12. Krist Moll says:

    Yes Nicole, definitely need to find a cure for the automimmune disease. It blows to the max. I guess I am extremely thyrotoxic? Super high T3. Did you ever try any herbal remedies or just the meds? I’ve read about several different herbs, etc. I went to a “natural dr”, I use the term loosely because her solution was to put me on estrogen only birth control. Don’t know how something that could potentially give me cancer could possibly work, so walked away from that idea. Anyway, love your articles. So far they are making me laugh my ass off.

  13. Val says:

    My 9 year old son was put on Methimazole by an endo who had the skills to use the meds. Because he knew to monitor the T4 and t3 instead of TSH, my son wound up with excellent treatment.

    He was on the drugs for 3 years (never taking more than 10mg), which is how long it took before his immune system stopped making the graves antibodies. He never had a single side effect from the med. His TED went away and his eye is now completely back to normal. His liver values remained perfect.

    He took his last Methimazole dose on June 24, 2006. He has been med free and in remission ever since.

    I was diagnosed with Graves in Nov 2006, and despite my serious sensitivity to meds, I didn’t hesitate to start on Methimazole therapy. I have been on MMI since then, and hoping to see remission soon, just like my son.

    Like my son and most people I meet who are on Methimazole, I’ve had not a single side effect. My dose has never been more than 5mg per day — which I think is where most people make the wrong turn and take doses that are way too high unecessarily especially if the endo thinks he needs to normalize TSH (big mistake). My endo says I can stay on MMI as long as I wish, or until my disease remits. I’m okay with that. 🙂

    Just thought I’d add some positves about the drug therapy. Our endo says 80% of his patients reach remission – & part of that is due to his skills at dosing them properly.

    Val

  14. Nicole Wells says:

    Thanks Joanna! : )

    Even though we may not share the same issues with our thyroids, it’s great we’re able to connect with similar experiences. Have a great weekend!

  15. Nicole Wells says:

    Hey Krist – I’m glad you enjoy the columns! I definitely want to convey the message that even when my poon is on fire from an allergy, I can still find a laugh outta the experience.

    I did try natural remedies, but they weren’t working for me. However, one thing I wished I tried was acupuncture. It didn’t dawn on me until recently that maybe that would have helped. Have you looked into doing that? I found a great acupuncturist that is also a gyno. I wanted to find someone who was well versed in female hormonal issues, as well as autoimmune disease (and she happened to be both). Sadly, I can’t afford to see her right now, but when I can I’m going to regularly visit so I can try to keep my body healthy going forward.

    As far as your natural doc prescribing birth control, I’ve never heard of a naturopathic doc doing something like that – sooo yeah, that seems a bit odd…

  16. Nicole Wells says:

    Hey Val,

    I’m interested in hearing more about your experience! It’s great that Methimazole is working for you and that it worked for your son, and it makes sense for an endo not to bombard a dosage to his or her patients. I’m curious to know why more endos don’t have that knowledge, since 80% remission seems very successful if it’s a simple matter of dosing one properly.

    Did he happen to mention the time frame of that remission? Was it patients over the course of 3,5, 10 years or more? I think it would be helpful and empowering to the DT community to hear more about this doctor’s methods, and your positive experience with methimazole. My email is nicole@dearthyroid.org, and I would LOVE to hear more from you, and if possible, speak to the doctor.

    Thank you so much for the positive information!

  17. Nicole: Agreed! We do need to find a cure for autoimmune disease. Sadly, it has so many causes, so I fear that may be no mean feat, but maybe one day … Here’s hoping!

    Val: It’s very inspiring and encouraging to hear about your positive experiences with this doctor. I was wondering whether you would like to add her details to the list of doctors we have on Dear Thyroid. If so, feel free to mail either me: sarah@dearthyroid.org or Nicole: nicole@dearthyroid.org. It sounds like you and Nicole are going to have further contact anyway, so maybe you can let Nicole know the details and she could then forward them to Katie to post on the site. Your name would not be mentioned – just the doctors details so other patients can benefit from this.

  18. Bee says:

    well, Lady, I am sitting on my couch at 0600 a.m. from yet another restless hypo night and I just finished your column. I AM PEEING IN MY PANTS AS WE SPEAK FROM LAUGHING!!!!! thanks for this. Even tho it’s early It’s a wonderful day in my neighborhood when i get to start it off with a good belly laugh-and it just confirms the fact that I don’t need anyone to amuse me but a good piece of writing and my unusual sense of humor.,,uncontrollabe fire twat…hahahaha..i’m experiencing a similar complication from what is apparently called vulvadynia (sp?)ome damn male gyno has been unsuccessfully treating it since december ’09 and after my last visit where i mentioned something about shoving hot pokers up his dick, I’m going to have to fire him. A result of a “probable” hormone imbalance-oh yes, another one, ain’t I the lucky one?!So while our hores are a moanin’, I wish you success with your new treatment and I’d also like to confirm that i am so glad I ONLY have hypoT-maybe the hashi kind-but-we’re-not-100%-on that because you Graves ppl scare me and the poisons you have to use seem to cause everything from growing a 3rd eye to a tail. Good Luck. I mean that!!!

  19. Nicole Wells says:

    Hey Bee, I’m glad I started your day out with some laughter! I am a sad clown…

    Yeah, I kinda wish I only grew a tail from Graves, cause at least that would be more interesting than “smooth, velvety skin” which for some reason, is the only good symptom of Graves. A tail would be more of a convo starter at least. Butt piss/seatbelt dia is probably one of the worst symptoms -I had to plan out every trip away from home, so I wouldn’t shit my pants on accident. Absolute nightmare.

  20. Bee says:

    Is that also a hyper shmptom? give me good old hypo constipation, rabbit pellet poop any day

  21. Lolly says:

    Nicole,

    Love your humour,I had good experience with anti thyroid drugs I was on carbimazole the UK equivalent to your shit.
    I had a base line done for Liver before even starting it which showed abnormal levels of urea, gamma GT,potassium, alkaline phosphatase.(Live enzymes). so with graves your liver and other labs can already be out of range.

    I don’t actually agree that you have to be on ATD’s for only 18 months it can be used in Graves disease as a maintenance dose.
    The problem with these drugs are the doctors and Endofuckingcrimniogists who actually prescribe it, they panic they give you a big dose without any beta blockers, don’t reduce as soon as your levels fall into the normal range and because these tablets come in doses on 5mg 10 mg and 20mg there are no 1 mg tablets you are left on either too high a dose or not enough.

    I am not saying that is the case with you, there are some people who can’t tolerate it but the majority can.
    We even as much as get to be a dab hand at actually cutting a 5mg tablet into even smaller dose to be able to get the right maintenance dose. I took as little as 1.25 mg to keep my thyroid levels stable, if it was left to my endo I would still be taking 5mg every other day and getting hypo.

    You may have had a bad experience with it but the majority of graves patients don’t and some have gone into remission and are now dose free, so what works for one may not for another but don’t knock it because it has been bad for you it has done wonders for others and still continues to do so.
    BTW my Liver function tests went down once I was stable.

    You chose RAI over surgery what I wanted to know was did you have any eye disease what made you choose RAI as it has been known to cause the eye disease to get worse and in that instance surgery is the better option out of the 2 how are your eyes have they gotten worse?

    Sorry that antithyroid drugs weren’t for you but they do help so many with little or no side effects. Too many people scare monger about Liver problems when in some cases the liver is already messed up due to Graves disease. but then like you it can happen due to the medication. If we were to read every side effect of every medication on the market we wouldn’t takeing fucking anything.

    Thank you for your article.

    Val good to see you posting glad you came in and told about your sons experience with ATD’s.

    Lollyxoxox

  22. Nicole Wells says:

    Hi Lolly,

    I’m happy if the drugs work for some people, but let me explain further…

    My frustration comes from lack of options due to a lack of research going into autoimmune disease causes. If you don’t know a cause, then how can you effectively find a cure? I knock the drugs in the sense that I don’t feel that adding more chemicals to our bodies is the end-all cure, and I hate that these are the options we’re fed. Also, it seems that endos don’t really know how to prescribe them properly. I’ve seen 5 for this disease, that borders on ridiculous.

    I don’t pop pain relievers when I have a headache, unless the headache has me on the floor. The last time that happened, I found a full bottle of expired Advil in my cabinet…oh well. Before I try and stop the pain with a chemical, I want to know WHY my body developed the headache. Am I dehydrated? Have I not had enough protein? Therefore, I go about finding the source of my headache and curing it without pain medication. 9 times out of 10 – this works and my headache will go away within an hour or so naturally.

    I was in the hospital two weeks ago because of appendicitis, and the doctor asked me if I wanted morphine. When I said “nah, I’m good” she looked at me like I had escaped the asylum. “You sure???”

    I had to EXPLAIN that I wanted to be aware of what was going on in my body, and know the level of pain I was in. Pain is our body’s way of telling us “hey dude, fix this.” Why should our first choice to be treating a symptom and not the cause?

    My thyroid disease is obviously on a much larger scale than a headache, however, WHY did I get sick? How do I go about fixing it so it doesn’t happen again?

    A major concern for me was after I destroy my thyroid, what happens to my antibodies? I asked one of my many endos, and he said “for the most part, they go down, very rarely I see patients develop Lupus”. I’m not worried about getting Lupus really, I’m worried about the thing in my body that is STILL not cured and will possibly trigger some kind of immune response one day in the future – my goal is to try and fix that so I can be healthy going forward.

    When people talk about remission, my question is – how long did that remission last? 5 years? 10? 30? Longer? What steps can we take to educate ourselves, so “remission” really turns into “lifelong cure”?

    The reason I had to do RAI was because no surgeon would operate on me. My reaction to the drugs was so severe, and my thyroid levels NEVER reached the normal range even on the heavy doses I was given – they thought it was too risky to perform the operation with my heart bouncing out of my chest. Also, it’s harder to come by a skilled surgeon in the US because RAI is the go-to in this country. If I lived in Europe, maybe things would have turned out differently.

    I also asked about my eyes, since they were sooo awful at the time. I know that RAI does have a tendency to bug them out even more, but miraculously they went down a lot. Actually no, not miraculously – I don’t smoke, and I also cut out gluten and as many chemicals as possible from my diet. When I indulge in gluten, my allergies get worse, therefore, my immune system is haywire. My eyes get worse when I eat like shit. They’re still not great, but not nearly as bad as they were before. I would love it if they would go back to what they were, cause my eyes used to speak…”I will seduce you”. Now they’re more like “WHAT?” Before RAI they were “SHIT NO WAY ARE YOU SERIOUS!!!!!!”

    Last week, I had a bad GED episode, and I honestly think it’s from eating too much bread and restaurant food. I usually cook fresh food at home, but since the doc told me I couldn’t lift more than 10lbs – grocery shopping hasn’t really been on the “to do” list for the past two weeks.

    Whatever we put into our bodies, we get out. Unfortunately, it’s nearly impossible to escape all the chemicals lacing our food – so all you can do is your best. Btw, I am writing a GED column for next week because of my experience last week and subsequent meltdown.

    Thank you for your comment Lolly, have a great week!

  23. Lolly says:

    Nicole,

    Thank you for taking the time to explain your side of things. I am similar in many respect |I hate taking medication full stop. but after suffering really bad heart palps and Hypertension I was left with no real choice but to start on ATD’s and As RAI was not an option for me either my goal was to get euthyroid and possible remission I never got to remission because of the nodule and ended yup having surgery which I fucking regret to this day because now what has replaced the ATD’s but a poor substitute for the thyroid.

    I too refused opiates after my surgeries and in recovery one of the theatre nurses was pumping me full of it till I told her to stop i didn’t want the thing I ended up being sick straight after a thyroidectomy.I had already told the Anaesthetist I didn’t want any narcotics or anti inflammatory’s.

    With Graves diease depenmding on the severity the intial course of treatment is to start anti thyroid drugs with maybe beta blocvkers until you can get those ellves back into a safe place I was T3 toxicosis with nio TSH at all.

    Sorry that the drugs didntl work for you but they do for many and are still doing to day. there are many Graves disease peeps who live in hiope that one day they will find a cure or cause of graves disease, until then they are haninging onto there thyroids.

    You are so right Docs/Endo’s fear Hyerthyroidism nore than hyper they would rahtwer render you hypo so they can control it better but thjat isnlt the way to treat Graves or hypers you start with a dose and reduce as soon as the levles go into range and then keeop reducing until your on a maintenance dose. Insted they see a TSh that is still supressed probably duie to antibodies and then want to increase your dose they still havebnlt all gklto it right that’s why educating is a must.

    I agree with living a healthy life style watching what you eat and yes food can upset the balance especially the eyes. reducing stress levels toxins hell these days you have to live in a bubble.

    I wasnt; having a go I was just staging for the record because that has ben success with ATD’s I know of at least 5 poeple who are now of meds and still euthyroid, and some have been for years.

    Look forward to you next cloumn somethuing that i can certainly relate too.

    You have a great week too

    Lollyxoxo

  24. Graves Situation says:

    I didn’t have any fun with the ATDs, even though my endo started me on a small dose. My favorite part of the methimazole, besides the insane itching, was the crop of little red blood-blister looking things on my skin, especially my chest. A year after getting off the stuff they are still there. The highlight of PTU was the joint pain and swelling. It only took about three months after stopping the meds to get my knees, shoulder, elbow, and hip back to normal, but it finally took cortisone injections to get one finger joint workable again (a year later). No thanks. For now, keep the propranolol coming, and I’ll deal with it.

  25. Cindie says:

    I too had a bad reaction to Tapazole. I first tried the stuff six years ago when I first dignosed with Graves. I had a reaction back then and stopped taking it. When my endo freaked out that I had quit taking it and screamed and yelled, I stopped him too.

    I didn’t return to the endo for two years. (it took almost that long to be diagnosed to begin with). The next time I went back the thyroids were pretty bad. This time he put me on PTU. Guess what? I reacted to that too. I did take the stuff for a couple months though until my levels got back to normal.

    Fast forward two more years….I’m having stomach issues and was told by my GI doctor that I had to have my gall bladder removed. They checked my thyroid levels and refused to touch me….so it was back to the endo I went. This time he put me back on Tapazole and told me to stay on it for at least a month. We were hoping that it would get my levels down enough to have the RAI and then gall bladder removal.

    No such luck. After a couple weeks on it I started itching and getting irritable. My hair started falling out in clumps. By the end of the third week my hands, face and butt we beet red and swollen. My temp was elevated and my pulse sky rocketed. When I went to the ER they were afraid I was going into thyroid storm and put me on heart monitors, heavy beta blockers, and steriods. But after a couple hours they sent me home.

    By the next day I was throwing up non-stop. I kept begging my husband to take me back to the ER because I was too weak to drive myself. I finally got to the point were I knew that I had to do something soon or end up dead, so I climbed out of bed and dragged my butt into the living room and told my husband to call an ambulance. I then proceeded to pass out at his feet. tehe, I think I scared the hell out of him.

    This time the hospital actually kept me. I was there for five days while the doctors shook their heads wondering what the heck they were going to do. My levels finally went down and I was sent directly to my endo to schedule the RAI.

    It didn’t work by the way. My levels are now even higher than they were before I went into the hospital. And now what they thought were gall stones look more like cancer cells.

    I’m allergic to both medicnes, the RAI didn’t work and it’s too soon to have another one, I can’t have the thyroids taken out because my levels are too high and I can’t even have any procedures done to see if this really is cancer or not because anything I do might send me into thyroid storm. Guess I’m just screwed. 🙁

  26. Nicole Wells says:

    Hi Graves Situation – I’m sorry you had a bad reaction to the meds – I also used the beta blockers until I moved forward with if and when I was going to get the RAI – I felt backed into a corner at that point. Are you waiting because you’re not sure on RAI or surgery?

  27. Nicole Wells says:

    Hi Cindie,

    I’m near tears reading your story – don’t say you’re screwed, we’re all here to help each other when doctors fail us.

    When did you have the RAI done? What was the dose? The RAI can have a tendency to spike your levels because of all the excess thyroid hormone being dumped into your system – I believe this can continue for about a month or so after it’s done.

    If it’s been longer than a month or two, I’m curious to know what explanation the doctors gave you when the RAI didn’t “take”. Since it’s iodine, and our overactive thyroids absorb a shit ton of iodine…it should uptake some of the iodine and dump out the rest. If you eat an extremely high iodine diet, and didn’t cut some of it out before RAI – that might be a reason it wouldn’t have gotten fully absorbed….that’s all I can think of without the full story.

    I’ve spent so much time being my own doctor because every other one has failed me…

  28. Graves Situation says:

    Nicole-
    My doctor is starting to make more and more noise about RAI, but I really don’t see what’s in it for me. My levels have stayed in range (well,almost) and the beta blocker takes care of the most annoying symptoms, like shaking hands and a racing heart, without side effects. I’ve had mild eye problems. For some reason, he doesn’t think surgery is a good option- I can’t get an answer why. Maybe because it’s more expensive. How long ago did you do RAI, and how have you done with it? You tend to hear the horror stories, but I wonder if that isn’t because the people who are fine don’t hang out on screwed-up thyroid websites.

  29. Graves Situation says:

    Needed one more hyphen there- the THYROIDS are screwed up, not websites like this one!

  30. Nicole Wells says:

    Hey Graves Situation – I had RAI done 6 months ago, and it seems to have worked out fine for now. Besides getting fat everywhere but my tits, and feeling tired here and there – it’s better than dying daily. I think my body is just going to take awhile to adjust, so I have to deal with the shit in the meantime. Good luck with whatever you decide to do, and you should definitely ask your doctor why the surgery isn’t a good option. For me, it was because I was allergic to the meds and my levels weren’t in range – they wouldn’t dare operate in that circumstance.

  31. natasha goodman says:

    Dear nicole,
    I’m up at 5am reading ur posts and feel heartbroken and so zesty for u at the same time. What a spirit u are! Taking this horrible manaical twisted and acerbic disease and bashing it in the marrow of its mind. You go get em girl. Don’t ever give up. Never. You were always a scrapper from the day I met you.
    Natasha Goodman

  32. Rock says:

    “uncontrolable fire twat” LMAO. even with all that shit you endured, you are still saying the funniest things ever.

  33. Gina says:

    I started having problems with my thyroid about 7 months ago after having my son. The first endo I went to basically told me I was dying! He wanted me to stop nursing my son and to start taking high doses of ATD. Scared to death I went to see my primary doc and he said I was not dying and from there we went to work to see if we could figure out what was causing my hyperthyroid problems. It’s basically an auto immune disorder so we did a bunch of allergy testing through ALCAT, it can test for food, environmental and medication allergies. We found that I’m allergic to more foods than I’m not so I have cut out all those foods I’m allergic to and now rotate all my other foods. I am also juicing in my vitamix(a high power blender that pulverizes all the fruit and veggie so you keep the fiber too) goitrogenic foods twice a day(broccoli, cauliflower, cabbage, strawberries, peaches…. you can google it for a complete list) and drinking 3 glasses of soy milk a day (soy and raw goitrogens depress thyroid function so hypo’s should stay away from these foods) So far my levels have come down signifigantly with my T4 free levels now inside the normal range but my t3 is still double the norm and TSH non exsistent. The only medication I have taken is a beta blocker and very reluctantly because I’m still nursing my son but it did control my symptoms and give my nutritional changes time to work. I have also been taking a few supplements such as copper, calcium and magnesium. There is a theory that hyper is caused by a copper deficiency so you might want to get tested to see how yours is. I think because I was still nursing and not wanting to give that up I was very cautious with what treatments I was willing to try. Just reading the potential side effects of the ATD’s was enough of a reason to try all other natural options first. Once I stop nursing if I am still hyper my doctor has said we can try bugleweed its a natural ATD. I will try all the natural options before resorting to ATD’s, RAI, or surgery! That has meant a grain free, sugar free, alcohol free diet the last 7 months which has not been easy. Wheat/gluten and sugar can wreck havoc on the immune system! That’s why I am now on a primal/paleo diet (www.marksdailyapple.com)and plan to stay that way the rest of my life. It basically consists of meat, eggs, vegetables, fruit, nuts and seeds. After reading all these posts about the trouble with ATD’s I’m so glad I have not taken them. I hope my post will help some of you and give you some alternative treatment options to try even if you are already on ATD it cant hurt!

  34. Jane says:

    Your tale of graves and taking methimazole could be word for word my experience in Jan 2010…the only difference is the not-so-helpful reaction of the emergency department when they said ‘wow we have never seen an allergic reaction that bad – can we take photos of it?’!!

    I moved on to PTU – it’s got me down (too far into hypo as seems to be common) – but it has been a very bumpy ride and every day continues to be a rollercoaster of unpleasant often changing side effects.

    For me to cope day to day on PTU, the (best chance of a good day) rules are:

    – slightly smaller dose than the doctor says (sssh don’t tell)
    – same size dose every 8 hours even if you miss one (don’t take a larger dose or unremitting nausea)
    – no fizzy drinks or alcohol within 1-2 hours of dose (and especially not fizzy alcoholic drinks like beer, cider or champagne or risk projectile vomiting – in fact 1 drink is all I can have but apparently I am ‘weird like that’ according to my doctor)
    – always eat carb-heavy meals just before and if you forget your dose wait until your next meal (or unremitting nausea) – I am not gluten intolerant so this works for me but might not for others
    – take night dose only if you will get 6 or more hours sleep allowing body to process dose
    – don’t take fish oil or multivitamin supplements (or get bloating and cramps)
    – accept that if you don’t follow the rules you will get (a) homer simpson / 6 months pregnant-look bloat, (b) constant nausea plus cramps or if you really forget and just have a good time (c) projectile vomiting and sweats!!

    If this helps one person avoid some of the days I have had since diagnosed with Graves, I will consider this 5 minute email as invaluable.

    Thankyou Nicole for airing your experience even though I hate that you had to go through anything like it. I hope everything stabilizes/is good again now 🙂

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