[WWWI2]

#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.

[beach45]

#1174988

Hi WWW12,

Your welcome; I know of others where the calcium/magnesium helped.
Good luck with that and your doctor.

Thanks; I figure in time if I get my levels where they are best for me maybe I’ll feel more normal. I really do not know what normal is now 2-1/2 years. I admit things are better in some ways post RAI and in others not. Yet I know for some it takes longer than others and I too am open to Armour possibly as my internist is willing to try; I am not very big on Synthetic drugs or any drugs for that matter for myself yet many do well on Synthroid alone.

That is interesting what you say about your T3 levels and the joint/muscle pain; I know for me when I went hyper my joints hurt terribly and that was when my T3 was high. When my T3 was low with hypothyroid, my muscles ached more. I may be going a little toward the hyperthyroid side with my generic Synthroid because my last blood work showed my FT4 slightly high and yet my TSH was a little bit under 1. I kept track of all my blood work with levels for the 2-1/2 years on an excel spreadsheet and have blood work results also of my TSH and FT4 from past years pre Graves so I kind of know where my levels need to be; problem is that getting my thyroid hormone just right as what I’m at may be a little too much and if my endocrinologist decreased me it may put me more toward hypothyroid. I kind of know just by my muscles and joints what levels I am at just like with my hair falling out or not. The only thing that puzzles me is that the weight is not budging!

I wish you much luck with this moving forward and that you get your levels best stablized for you moving forward without much trouble. I really wish for myself I had gone into remission on antithyroid drugs yet it just did not work out for me!

[WWWI2]

#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.

[Kimberly]

#1174990

Hi all – Just a quick note that for those who would like to post links with medical information, following are some examples of sites that the GDATF considers credible sources:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://gdatf.org/about/about-graves-disease/links/

In particular, The Mayo Clinic and The Cleveland Clinic have great searchable databases on various medical conditions.

Our Board is very sticky about links from other sources being posted, due to concerns that the information might not be correct — and that it could be viewed by other posters.

Hope this helps!

[WWWI2]

#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

[Alyianna]

#1174992

Well… whether the removed link was credible or not, it really does match my symptoms VERY well. Definitely something for me to research and ask my doctor about… maybe even ask for a referral to a neurologist and see what they have to say. Thank you for posting this! It gives me hope that in due time, my levels will be evened out and I may return to some kind of normal.

The pain, for me, is the only symptom I have that I am struggling to deal with. I can handle the rest because they make my life unpleasant but they do not stop me from living. The pain… stops me from fully living.

[WWWI2]

#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.

[Kimberly]

#1174994

Just a quick note to keep in mind that symptoms for various conditions can overlap, so it’s really important to find a doctor who will work with you to get a correct diagnosis — and get you started on the proper treatment.

For example, one of the presenters at our San Diego conference put up a list of symptoms for conditions such as Generalized Anxiety Disorder, Social Anxiety Disorder, Bipolar, Panic Disorder, and Major Depressive Episodes. Turns out there is a huge overlap between symptoms for these disorders and Graves’ disease…which is why so many GD patients are misdiagnosed and started on a treatment path that completely misses the root cause!

When you are having symptoms that affect your quality of life, it’s important to keep fighting until someone will help you put all the puzzle pieces together…but it’s also important to keep an open mind along that journey and to leave no stone unturned in exploring *all* of the potential causes.

If you find research from a credible source that seems to fit the symptoms you are having, definitely bring this to your own doctors’ attention. If your doc feels that this is *not* what is going on, then he/she should be able to give you specific reasons why, rather than just dismissing your concerns — and then continue on in helping you find out what *is* going on.

[beach45]

#1174995

WWW12,

I certainly hope it is not a forever thing this pain; I’m in my early 50s and I feel sometimes like I’m much older since this RAI and being on Generic Synthroid; yet on Methimazole I had issues too; for me it all depends on my levels and then again as I mentioned before the weight gain that I have had from ATDs and post RAI has not helped. For me the calcium/magnesium took a while to work as I find supplements are like that. Yet in my opinion getting to the right levels and working with the right doctor is the key; because it is not a one size fits all with this thyroid business as I am finding out for myself. I’m still searching for the right doctor and I will not settle or get other medications offered to me to bandaid situations.

I hope you find the right doctor to work this through with you. I had very bad issues with muscles prior to getting treated when my Graves was in full swing. Now I have different problems post RAI. I had a time once on Methimazole where I went very hypothyroid and my entire body ached for a long time like I had the flu. When readjusted things got better yet I also have been doing a lot of acupuncture for almost a year too. Plus going into the change of life has probably not helped either with estrogen levels dropping. I hope to get a very good blood workup by an Integrative type MD I have gone to in the past.

It will get better once you get with the right physician who will figure out what is really going on and get you to balance. This journey is not easy at least I find for me and I hate to say with ATDs and then RAI I seem to have aged about 10 years. Yet I have hope with searching and getting to the right medical practitioner that things will get better with pain. Good luck and please keep us posted!

[Alyianna]

#1174996

I certainly have an open mind and want to explore all potential causes and such. I think the frustrating thing for me is that my life altering symptoms are being discounted. No one wants to deal with those. The endo think the rheumatologist should be handling that and sends me there… the rheumatologist spent 5 minutes with me and said it is all thyroid related and that my endo should be handling it. Meanwhile, being blown off just puts me in the position that I am just medicating symptoms and hoping it’ll just go away.

While I wouldn’t wish this pain on anyone… I am glad to hear there are others with similar issue.

And… I hope some doctor in my area will take it seriously… because Vicodin is not the answer… and that seems to be what they are going to as the default answer without even taking any responsibility to actually seek the cause.

I 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.

I live in Dubuque, Iowa… that is likely a huge part of my problem. The closest place we go for good quality care is Mayo, which is ~4-5 hours away. As often as I am going for labwork and such, it’s not feasible for me to go that far away… I don’t even have enough time off work to cover that.

So… if there is some kind of hope to be found on a website posted to a forum… I am grateful… because it sure is a hell of a lot more hope than I am receiving in the doctor offices.

Sorry for the rant, I am way beyond frustrated and so tired of popping pain pills just to be able to join society.

[catstuart7]

#1174997

For me joint pain was a symptom of the hyper state building. My very first Graves symptoms were eye symptoms – kind of inflamed irritated conjunctiva made my eyes look red all the time almost a year before diagnosis. After six months of that I had a couple of weeks of terrible pain in my joints – it felt like I’d imagine glass inside them would feel, in my finger joints and cerebral vertebrae, pain so bad it made my gasp and freeze. One time I was putting a barrette in my hair and the pain sudden hit a joint in my hand manipulating the barette – I literally yelled it was so sudden and sharp. I went to the doctor with this and my unusually fast pulse (was 100) and my doc said oh it’s probably nothing. I said what about my pulse though? And she said oh some people are just faster than others. The joint pain did thank God get better. But the pulse kept getting faster and other weird things began to happen and six months later I had the shakes, diarrhea, heart racing and well you guys know the rest.

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. It sucks. I hope those of you suffering pain find much relief soon!

[Naisly]

#1174998

WWW12

I 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.

Ok, so depending on your treatment, and where your at with this disease, something might not suite you so remember its always best to talk with your doctor.

WWWI2 wrote:

I kept reading online that joint pain is very uncommon in Graves

This is not true. I had very bad pains when I was hyper – my levels were pretty bad:
TSH 0.06 (0.38-5.5)
T4 Free 58.2 (10.5-20.0)
T3 Free 21.7 (3.5-6.5)
I later found out this pain can be quite normal, also, high FT3 can cause this. I also learned that Propranolol (beta-blocker) can help lower FT3 as well as BP, anxiety, even headaches etc. It is known that they give this out for just that – migraines and anxiety.

It is also known that muscle aches are a symptom of being hypo. So I suggest you get your levels checked, even if you have to every 3weeks, which was suggested for me, actually now every 2weeks for me since my levels are changing so fast.

You must realize that it does take a while for your body to heal from all of this. It’s like having a broken leg (lets say) it doesn’t heal in a week, but can take 6months for one leg, imagine your whole body needs to heal.

One last thing, CoQ10 is really great for the Fibromyalgia type pains. Have a look at this web site Just explains what it is.

Remember to always talk to your doctor, and educate yourself.

~Naisly

[Kimberly]

#1174999

Mayo is a great source, and I think it’s important to pay attention to their cautionary note on CoQ10:

“CoQ10 has been used, recommended, or studied for numerous conditions, but remains controversial as a treatment in many areas.”

This is definitely an area where a further consult with your doc would be advised before pursuing this as an option.

[WWWI2]

#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.

WWWI2

[MaryI]

#1175001

Have not posted in quite a while but here is a short comment. My choice of treatment is Tapazole. I have tracked how I feel now since June 2010, and note that when I am swinging to hyper again my legs ache first, then my arms, and I get short of breath. When I swing to the hypo my joints , even my feet, get sore and my energy level is lessened & exercise is harder and not enjoyable. The symptoms are definately different. It is amazing that the body responds to an adjustment in dosage in 7-10 days and one can feel great again. I now have a new Endo & now get labs done every 2 months instead of 3-6 months as ordered by my old Endo. It really is hard to keep on top of your symptoms and be able to tell your doctor what they need to know without tracking where you feel the best and at what dosage you were at that time. I am so glad that this forum is here!

[Author]

Posts