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in reply to: Joint/Muscle Pain – How common? #1175015

Catstuart,

I’m not angry that he dropped me from 20 mg to 10 mg, in fact I appreciate the fact that he started me on 20 mg as opposed to 30 and was being conservative from the get go. I was fine when he dropped me to 10 mg, in fact because I responded fairly quickly to the 20 mg, and had hoped the same would happen with 10 mg.

Where the problem came in was I didn’t respond well and he basically abandoned me and pushed me off to my PC, who had no idea what to do. Considering that I anticipate that RAI is in my future and unlike the methimazol, which can be adjusted, once RAI is done, I’m stuck and if it things go badly and if history is any indication of future actions, I could be in trouble. What’s he going to do then? Send me to my Vet?

Beach,

Thank you for sharing your story with me. You have had quite a time for several years. I hope the levels you are attempting will allow you to stabalize. It also gives me some hope that you did survive RAI despite the challenges it presented. I’m not sure I’m ever going to not be afraid of it. Doesn’t mean I won’t do it, just that fear will be have a constant presence.

I can’t even imagine what you must have felt with a TSH of 60. That’s insane! But getting off the Meth roller coaster, I do understand. I too have heard that NSAID’s are not a good idea with Grave’s but I also understand that depending on how severe the situation, it might have to be an option.

I think my Endo is a bright guy, I’m not sure how knowledgable he is regarding Graves. Either he doesn’t know much or he knows a lot and I simply make his life inconvenient. Either way, I’m going to roll the dice and see what else is out there.

Thank you again for sharing so much of yourself with me. It gives me an idea of what the future holds for me and while we are all different, reminds me that I just have to take it day by day, educate myself as best I can and fight for myself. Thank you

Noah,

I wish you ease in your journey and hope you find the help that you need. Sending thoughts of comfort and relief

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in reply to: Joint/Muscle Pain – How common? #1175011

Beach after reading through all that in more detail, please tell me for good or for bad, knowing everyone is different, 1. What was the benefit to you of RAI over ATD’s. 2. How has RAI been for you (yes I’m scared to know, but would like the truth from your perspective, obviously depending on your comfort level) the good, bad and ugly. 3. If you knew then what you know now, what would you have done differently, if anything. And anything else that happens to pop into your head

Thanks so much for all of your posts. I was in quite a rage these last few days and simply being heard, while it doesn’t take the pain away, it does help me temper the rage. So thank you and to all of you who have posted.

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in reply to: Joint/Muscle Pain – How common? #1175010

Beach,

I will take heed of your warning regarding self dosing. I think those are wise words. But that still leaves me, especially knowing that any adjustment can be significant, with great frustration the little consideration this doctor made in adjusting my dose.

What I have learned is that a very little can have a very large impact and that the reprecussions can be significant.

I’ve been so self involved about all this that I need to go back and re-read what you went through with Meth and RAI more thoroughly. I will probably have MORE questions lol.

Considering what you have been through you are clearly a very strong individual. None of this is for the faint hearted.

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in reply to: Joint/Muscle Pain – How common? #1175007

Beach,

You have certainly had your share. I’m so sorry. I guess I shouldn’t be complaining as if I’m the only one with problems lol. I really wish things were different for you and I appreciate the reminder.

On my first go round with the gut stuff, I was told to go to a naturalpath doctor who specialized in digestive problems. Sadly the end result was a lot of money out and no help except for a lot of gibberish that ended up with him saying, “yes i can help you (with suppliments that would have exaserbated my situtation) but just know that you will probably feel worse for a while, before you feel better” all the while collecting money from me. So I passed.

The hardest part of all of this is that until you’ve been down the road long enough, you don’t know what is and isn’t acceptable to self treat. For example, looking back to the drop from 20 mg Methimazol to 10 mg, and the subsequent problems, it might not have been unreasonable for my doctor to say, that since the dose drop was too significant and the result was severe, it may not be a bad idea to bring you back up to 20 mg for a week or perhaps for the next couple weeks take 20 mg every other day.

The odds are I would have not have had to wait several weeks for some relief. But instead, it took him more than a week just to call me back, or rather for his assistant to call me back and tell me, yes you need to be on 15 mg, not 10 (and STILL he won’t admit he put me to the 10 mg in the first place). When the pain still hadn’t resolved he sent me to the primary care and now I’m on narcotics.

If I were further along, I might have taken it into my own hands and played with the dose, but this is a new drug for me and this doctor seems fairly adamant that I follow his instructions. Besides I AM NOT A DOCTOR!

The pain is still there but I can see that as time passes it eases some, so the meds may be kicking in, but this has gone on for several weeks. Is that really necessary?!? I’m counting on him to help me through this and he’s not. He probably could have saved me a bunch of unnecessary pain if he’d just taken the very small amount of time that was required. I guess that’s too much to ask. On to Endo #2…

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in reply to: Joint/Muscle Pain – How common? #1175004

Beach,

I’m new to Grave’s being diagnosed in August (although it had been going on for some time). My frustration is that, I started getting sick in 2008, with my first autoimmune disease. I had horrible gut pain that wouldn’t go away and was initially misdiagnosed and lost my gallbladder. When it was finally determined what it was, it took 2 years before it got under control and the issues I’m running into now with doctors mirrors that experience. All the while being told I was a “rare” case and as a result getting virtually no help from doctors. We tried all the steroids, etc but it turns out, there really is no effective treatment for all, and so I simply suffered for two years until it went into remission

Just prior to 2010, when I went into remission, I became aware I was also having other digestive problems, that had been trumped by the other condition, but whenit went into remission, they surfaced. And although my Gastroenterologist said it wasn’t possible, after doing my own research and begging her to test me, it turns out I was spot on, I was diagnosed with Celiacs.

In 2010, I started to withdraw from a drug that I was unaware would be a problem to get off of and have spent the last two years getting off that drug, all the while being told it was me, I was a rare one, and ultimately I’ve had to figure this one out on my own once again. so for another 2 years I have been very very slowly titrating off this medication with all the pain nd distress it involved. Again, with virtually no support from the medical profession, who got me into this mess in the first place.

In July 2012, I had a ruptured appendix. And here I am again, in August 2012 diagnosed with yet another new disease, and based on my experience so far, I’m in the same boat as the previous situations. I have lost my patience, I have lost my tolerance for doctors who either don’t know and won’t admit they don’t know or that they don’t want to be inconvenienced.

Sadly I believe this is all as a result of taking a medication that I should never taken. Tegretol, an anticonvulsant, has been implicated in triggering Lymphocitic Colitis, my first autoimmune disease. Once one has an autoimmune disease, their chances of subsequent autoimmune diseases increases significantly. And in my case that would now include Celiacs disease, and now grave’s disease. All because in my ignorance and youth i went to see a doctor about a problem that she misdiagnosed.

I’ve simply had it. Prior to 2008 I was healthy as a horse. Now I just get sicker and sicker. The idea of having to again go through this same BS I’ve been dealing with for the last several years, with doctors who try to cover their ass, do the most minimal required, out and out lie because they don’t know what they are doing but refuse to admit it, where their egos override the care they are providing. I”VE HAD IT. I can’t do this again. I can’t deal with “just have patience, things will get better in time, this too shall pass, it is what it is”. I honest to god, have no idea how to get through this yet another time. If one more doctor does stupid ****, I’m not sure I can be responsible for how I respond. I’m SO over this, I can’t stand it.

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in reply to: Joint/Muscle Pain – How common? #1175000

Beach – I too hope it’s just time we need and good levels to get things settled. My mom went into menapause @ 51 and I’m 49, so if genetics and history dictate anything, I’m on my way shortly. I’m trying to get this as much under control as possible prior to that starting, but figure, I can only control so much…sadly.

I understand the premature aging. When I was full on Graves, ironically, I looked more youthful, and in these very very short months, things have changed dramatically. My face is swelling, my eyes…I could go on. But more importantly is how my body is changing and not for the good. I hope you get things stable.

Alyianna – I could not have stated that better. I share your great frustration. When you said ” I think the frustrating thing for me is that my life altering symptoms are being discounted. ” you spoke my mind. The fact that as a direct result of my doctor altering my Methamozol and dropping it drastically, but to then leave me hanging without explanation. This leads me to believe that either he does not know that this is possible or didn’t want to be inconvenienced. Either way it’s simply not acceptable.

You also said ” don’t want to research stuff… I didn’t go to med school out of choice. But I do want those who did go to med school out of choice to do a little research. It is frustrating to dump the kind of money they charge just to get some nodding heads and prescription for a narcotic before they move on to the next assembly line patient. ” and I have to say YES it is.

Your rant served a purpose. It save me having to do the very same thing. So thank you!

Catstuart – Thank you for your support and I couldn’t agree more when you say “I feel the same fury and frustration – I should not have to go to medical school or spend endless hours on the internet educating myself to make sure I get adequate care.”

Naisley – When you say ” have to say that I have been following this thread and sort of surprised that the obvious reasons for muscle aches and pains have not been mentioned. I will touch base on a few thoughts, and please keep in mind I’m not a doctor.” That makes me crazy.

First, if the reasons for joint/muscle pain associated to Graves were “obvious” why would I and others be posting asking about it?!?! Why wouldnn’t the doctors acknowledge it and ly when googling I see LOTS of questions about it but mostly in response I see denial. So I don’t know where you get your “obvious” answers, but I’d love to know the source because they are NOT obvious.

I’m not hypo and I’ve been on atenolol for months and no I don’t do CoQ10. I was in pain before I was diagnosed, the pain diminished when I started 20 mg of Methimazol and came back with a vengance when i was dropped to 10 mg. My Endo said nothing except to push me off to my primary care who had even less. The only clue i had was when, doing my own research, found there is something called Thyrotoxic or Graves Myopathy which was not something I was told about, may or may not have, but fits my symptoms very closely. What in ANY of this is obvious?!!?!?!

I’m sorry if I seem agitated, but to make statements to people who are blindly trying to navigate their way through something where limited information is provided, who are in pain and are scared, and where there is no difinitive answer out there to why we are in pain, how long it will last and if it will ever stop and state that it’s not a big deal and the answers are obvious appears arrogant and feels very dismissive.

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in reply to: Joint/Muscle Pain – How common? #1174993

Alyianna,

It’s confusing to me why the diagnostic process, based on these articles, is so extensive and cumbersome with multiple doctors involved to actually determine if this is the problem. Since going based simply by symptomology, it fits like a glove no?

Saw my primary care, who like me was entirely befuddled as to why I was seeing her and not THE GRAVES EXPERT ENDOCHRINOLOGIST for my GRAVE’S related problem. I have gone ahead and set an appointment with a new Endo.

In the meantime, my primary care decided, from the kindness of her heart to give me some relief, so I now have a shiney new bottle of Vicoden (her idea). And as much as I appreciate that, and I do, what I really want is to get my levels normalized since that apppears to be the ultimate resolution to the pain from what the articles state. It can take a few months to up to a year, once on a good level, for this to reverse itself. And until the levels are optimized, this will get progressively worse.

And after a night with the vicoden when the pain was minimal, it became abundantly apparent that, like you,how much the pain has impacted my ability to “fully live”. Just the fact that I was able to bend, had full mobility of my arms and my hips weren’t hurting, I could actually play with my oh so neglected cats. I’m also hoping that over the weekend, I can actually go out with friends and stand without their assistance. I’m only 49 for **** sake.

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in reply to: Joint/Muscle Pain – How common? #1174991

OK hopefully one of these will pass muster :

http://www.ninds.nih.gov/disorders/thyrotoxic_myopathy/thyrotoxic_myopathy.htm

http://emedicine.medscape.com/article/1170469-overview

http://www.medlink.com/medlinkcontent.asp

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in reply to: Joint/Muscle Pain – How common? #1174989

Beach I really appreciate your response. My greatest concern is that there may not be a “perfect” level and that I may be in pain ongoing. It also worries me greatly that you and I will share the same prediciment. Pain hyper or pain hypo.

I did try the Tonic water and sadly there was no impact. I also added calcuim/magnesium and no go. The pain is better than when I was dropped to 10 mg but not significantly. I keep waiting for the 15 mg to kick in, but so far I seem to be at a standstill. i can no longer put on my bra (yup TMI lol). When I bend or try to stand up from a seated position it hurts. I hurt when I wake up and it wakes me up when I’m sleeping.

I see my primary care tonight (“to get the ball rolling” at the prompting of my Endo) and have no idea what purpose that serves. The more reading I do online, the more I’m convinced I have what’s called “Thyrotoxic Myopathy” since it’s my shoulder, lower back and hip joints that seem most impacted.

The only resolution really is getting the levels right and giving it time. It can take as little as a couple months and up to a year to get things back to “normal”ish. I think his dropping me to 10 mg got everything messed up. And now even at 15 mg, I hurt. So I don’t know if further damage is being done or my body is trying to repair itself.

I’ve set an appointment with another endo for the end of the month. I have lost confidence in this doctor, but the more I hear, he’s no worse than most and that scares me. Argh. Bad day (week, month). At the moment I’m feeling a bit hopeless.

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in reply to: Joint/Muscle Pain – How common? #1174987

Beach,

Thank you for your response. I have magnesium/calcium at home and will pass that by my doctor. I’m picking up some tonic water today and am hoping for the best.

I’m sorry things are so rough right now for you. This levels thing is awfully complicated.

My doctor isn’t a proponent of Armour, yet another reason to seek out another doctor. I’m not sure Armour is for me, but to exclude it as an option, to me does not seem wise. Funny you mention T3. After my dose was lowered and I retested my t4 was still in the normal range but my t3 was 4 times normal and my joints/muscles went bad. 1. I had been under the impression that when one goes (T3 or T4) the other inevitably goes with it. But apparently that’s not the case always. 2. How T3 relates specifically to joint/muscle pain.

I hope things do level out for you quickly and you get some relief.

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in reply to: Joint/Muscle Pain – How common? #1174985

Kim, yes, symptoms are minimizing thankfully! Also, I realize that it’s an ehow article but it was quoting Mary Shomon who I believe has been a patient advocate regarding thyroid issues for many years. But I apologize if that link was inappropriate.

That’s really interesting about tonic water. Apparently it contains quinine but does not have the side effects of actually taking the drug. I will definitely check that out. And yes getting things leveled out appears more challenging then I had anticipated

I had the pain prior to the meds and it was getting increasingly bad. However once on the initial dose, things seemed to calm down substantially and it was only after the drop was from 20 mg to 10 that they resurfaced. Part of my confusion about what is what is that a month before I was diagnosed, I suffered a ruptured appendix and between the gut pain, the pain medication etc, I think I wasn’t as clear as it was in the last few weeks, just how much of this revolved around the graves for me.

I spoke to my sister and my mom who are both hypo and as it turns out (although I know it’s a whole lot more common in hypo then hyper) the symptom that brought them to the doctor in the first place was joint/muscle pain. So perhaps there is a hereditary connection.

I’m still frustrated with my doctor and am pursuing a new one. Just the fact that the passed me off to my primary care tells me if the going gets any rougher, he’s not going to be responsive. I will see him at least once again to try and understand his perspective and for the fact that it will take at least 3 months to get into any other endo. I just get the feeling that 1. perhaps his primary service is to those with diabetes and graves is not his expertise (which I’m guessing he won’t admit) or 2. He just wants to be a diagnostitian and not have to deal with anything unless it’s easy. I’ve run into that with a gastroenterologist, so this would not be news.

Anyway, thank you all for your feedback, it was helpful and very much appreciated.

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in reply to: Joint/Muscle Pain – How common? #1174978

Brrakes

How long between the RAI and when you felt good again? Do you have any wise words? Also, may I ask what thyroid meds you are on now? I’ve broached the subject of Armour with my doctor, for when that time comes, if it does and he’s not a proponent. I’m wondering what worked for you. And thanks for your kind words

Kim,

I’ve now been back to 15 mg for a little over a week. The joint pain is diminishing so it appears to be hyper related (and I hope to all that is holy lol, not hypo for me cause this sucks rocks) At the end of this month I’ll get tests and see the doc again. If my body starts to head in the wrong direction, either way, before then I’ll definitely be getting tests. Especially since it takes SO long for the meds to work to their full capacity.

I just found this here. (link edited).
To be candid, this tells me my doctor could be a problem going forward. He’s pushing RAI and I’ve told him no at this point. But I now am in fear that if I do RAI and things go badly as they well might, if he’s brushing me off now, what about when I’m in real trouble. Aaargh

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in reply to: Joint/Muscle Pain – How common? #1174975

Allyianna,

That’s exactly what I’m experiencing. That also was one of my main complaints and why I sought help. You are also correct that the doctors apparently don’t take it seriously. I left a message for my Endo only to get a message back stating the “the doctor said if you are having joint/muscle pain you need to contact your primary care doctor, inform them and let them address this. And in a month when you come back, we’ll see what your primary care doctor says”

This appears to be graves related. Additionally, my Endo shares his office with his wife, a rheumatologist. One would think that between the two, that would be the place to start. But instead he’s passing me off to my primary care doctor. WTF?

I hope too, for you and me, that the pain dimishes as time progresses.

Brrakes – That’s one of my greatest fears. That if it’s bad now, considering it’s a well known condition in relation to Hypo, if I go the way or RAI and become hypo, I’m screwed.

Thanks both of you for your feedback. Guess I’ll be living on tylenol and advil from here on out. Sigh…

[WWWI2]

in reply to: Chances of developping TED? #1174615

So just for grins I went to see an Ophthalmologist whom I was told had some expertise with Graves opthomopathy/TED.

Whether he’s right or not I don’t know, but he told me that if when looking in the mirror straight on, I can see any of the whites of my eyes appearing above my iris, then it’s time to have it looked at for TED.

Put this in the “for what it’s worth” category

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in reply to: gluten-free diet for weight gain #1174418

I’ve only been on the meds for going on four weeks. I’m on Methimazole. My doctor started me on 20 mg, which to my understanding is a conservative dose. I don’t know what will happen long term, but thus far there has been minimal weight gain.

I asked my doctor how much I would gain back once on the meds and he said I would probably gain back what I’ve lost. I had assumed, based on the fact that over the last 6 months I’ve lost over 30 lbs from Graves (and a ruptured appendix), that I would gain at least the 30 back. I had anticipated that it would be fairly immediate and went out and bought elastic clothing for just that reason.

But again, I’m almost a month in and while exceedingly careful of what I eat, I haven’t “blossomed” at all as I expected. Each of us are different, I realize, but it’s very possible that the weight gain, in addition to what has been lost prior, may be related to the dose of medication prescribed. Perhaps talk with your doctor and if your symptoms are not horribly severe, ask him/her whether they’d consider a conservative approach to the medication.

Also, I have Celiac and would not suggest it as a means of losing weight only for the fact as was mentioned above, you will severely limit your choices and there are many food now out there for people who can’t tolerate gluten that are not weight conscious, like the pizza suggested above.

I think people confuse gluten free with carbohydrate free and that is not the case. Potatoes and rice are two food that are allowed so if you are considering a weight program, perhaps consider a low carbohydrate one, Palaeolithic diet for example.
At another support site, for a third autoimmune disease I have that’s one they promote, mostly for people with food sensitivities, but it’s also lower in carbs. Might be worth a look.

Sorry to be so long winded, but you’ve touched on so many areas that I’m currently addressing, just thought I’d put in my 2 cents.

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