[WWWI2]

#1059483

I was diagnosed with GD in August and put on 20 mg Methimazole. Within 4 weeks I had responded well and my numbers were within normal range (except my tsh, which I’m told lags) so my doctor, in his infinite wisdom, decided to drop me to 10 mg, with a week’s transition at 15 mg.

As a result, all my levels spiked the wrong way. Also, I started to have horrific joint pain in my shoulders, lower back, place my thighs meet my hip (still not sure what that’s called).

I kept reading online that joint pain is very uncommon in Graves but is a known side effect of methamozole for a small percentage. However, when I go up on the meds, the joint pain diminishes, so I don’t think it’s the methamazol.

I was put on 15 mg a little over a week ago and yesterday/today, the pain is finally diminishing.

Am I the only one anyone has heard of with this? I can’t find much about this.

Thanks!

[Alyianna]

#1174973

I have had severe pain. It is hard to tell where it comes from most of the time. Sometimes it feels like my joints, sometimes I think it is muscular, sometimes it feels like my bones are inflamed! I have even had inflammation testing which does reveal I have inflammation… whatever that means!

This was debilitating and what took me to the doctor to begin with. I was put on Vicodin which I would take as soon as I could possibly take the next dose and was also taking a regular dose of ibuprofen just to get through the day.

It’s been over 2 months now and I have went from 30mg Methimazole to 15mg and now, these past couple weeks 5mg. I still have aches and pains just as described but nothing NEAR as severe. I am not taking the Vicodin anymore but still do take the ibuprofen… only as needed though, not constantly.

The doctors I see do not seem to be concerned with the pain at all. They just seem to think once my levels are stabilized it will just go away. I am really hopeful this is the case. My body feels like I am 95 years old when I am only 44!

Lets hope someone here has a success story to share that will give us some hope.

Aly

[brrakes]

#1174974

I had RAI done at the end of May and started Levothyroxine after only 6 weeks. When I started becoming hypO, I felt exactly like you are describing. Every time I moved the “wrong” way, I would have horrible pain, almost like I was pulling a muscle. I guess it was cramping. I also had severe joint pain, especially in my knees. Anyway, my levels are finally starting to even out and I’m much better. I haven’t felt that way in about a month.

[WWWI2]

#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…

[brrakes]

#1174976

I completely understand your fears. Being hypER was certainly no fun, and it was hard for me to imagine feeling worse. Well, after RAI I felt worse. Much worse. That being said, I feel great now. Better than I have in years. You will get through this!

Brrakes

[Kimberly]

#1174977

Hello – Joint pain can potentially be a side effect of ATDs, but it can also be a potential symptom of hypO. So definitely be persistent in getting your doc to take this issue seriously…and if it’s been a few weeks since your last set of labs, it’s worth doing another check to see where your levels are.

[WWWI2]

#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

[gatorgirly]

#1174980

FYI: the website you referenced (ehow.com) is just like Wikipedia and other unreliable internet sources. Anyone can write an “article” and have it “published.” Please never take anything on those sites for gospel. The Mayo Clinic information is probably valid, but go to the Mayo Clinic website to get it.

[brrakes]

#1174981

I’m currently taking 100 MCG of Levothyroxine. I went from 75 to 88, and now 100. I believe that we might have found the right dose and it took 5 months to find it, which felt like an eternity. I’ve only been feeling better since this last upped dose, so for about a month. I wish I had wise words! I think everyone can agree that we just have to try and be patient, no matter how difficult that may be. At least we know what’s wrong with us and that ultimately we will feel better. And try to be as honest as you can with your doctor about your symptoms. I can’t say I’m familiar with Armour.

[Kimberly]

#1174979

Hi all – I removed the link that was provided, as it did not list a credible reference. (The author was listed as “e-how contributor”). The forum’s policy allows for links to be posted here, but only if they come from a credible medical organization or from a recognized medical journal. For more info, you can check out the “New User? Read this First!” thread in the announcements section of the forum.

@WWWI2 – That’s good news that you are starting to see some relief. Hopefully, this latest adjustment will get you closer to your “sweet spot”! Yes, definitely make sure that your questions are answered before pursuing any of the treatment options. They all have risks and benefits…so you definitely want to be an educated consumer!

[Robboford]

#1174982

Hi www12,
Have you tried Tonic Water for relief? If you have read any of my posts you will know that I have been on my Graves’ journey for over 14 months. I will update my latest issues in a new posting, but in the meantime a brief outline: I am currently being medicated on a block and replace regime, just cannot get my levels right. Tsh finally detected 3 months ago, but has since dropped again. I felt I had been swinging from hyper to hypo (my Endo sort of agreed based on my comments and the fact I keep a daily diary of my issues and symptoms etc.), but at my last visit (10 days ago) I am still Hyper. For the whole of my journey I have had muscle cramps from stomach to arms and legs. 2 months ago I thought I had torn my Achilles Tendon and could hardly walk until 2 days later, I had the same in my right leg so had both legs that I could only “shuffle” on and the pain was terrible. I gained a tip from here about Tonic Water (Thank you gatorgirly (I think), Shirley and others) and although to me the taste was disgusting, I persisted and have 1/2 a glass a day (now I mix it with Low Cal Raspberry Cordial which makes it a bit more bearable) and it helped substantially. I don’t know if it was a coincidence or not but I am still having 1/2 a glass daily and the cramps and aches are not as severe. I still experience the aches and still have the tingling and my arms and legs (“falling asleep or going numb”), but it is a lot more bearable. Good luck on your journey and stay well.
Cheers
Debbie

[Alyianna]

#1174983

For me, the pain is not caused by the ATDs because I had the pain before I was diagnosed and medicated. I have went from Hyper to Hypo and the pain levels are up and down without any sort of reasoning… but even the best of the good days are not pain free.

There was a time when I went from being in such high pain I was requiring narcotic pain relief to a lower pain and getting by using ibuprofen and tylenol only… that occurred just a few days after I quit taking the 100mg of Atenolol. My doctor didn’t wean me from it, just told me to quit taking it. The following two days were nearly unbearable pain-wise… but then there has been some improvement.

Now, I consider myself as feeling MUCH better… and I do feel much better… but the joints/muscles/bones still hurt, it’s just more tolerable… but still at a level I should not have to tolerate I also have swelling.

I was sent to a rheumatologist. He quickly looked me over, said there wasn’t anything he could do for me, and added he thought it was all Graves related. The Endo says he cannot do anything for me because it is not Graves related… and the only person who will even listen to my symptoms is the Infectious Disease doctor I was set up with when I first went to the GP before diagnosis! Oh it can all be so frustrating and maddening!

I’m going to try the Tonic Water. I have nothing to lose

Thanks for reading my vent if you made it this far

[Robboford]

#1174984

Hi Alyianna,
Thanks for reading my post. I would be interested to hear how the Tonic Water goes for you, hopefully it will offer some relief.
Cheers
Debbie

[WWWI2]

#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.

[beach45]

#1174986

Hello,

I had joint/muscle pain on antithyroid Methimazole off and on when I took it 20 months. Joint pain really intensified if my levels were going too much toward hyperthyroid; muscle pain intensified more when my levels were going too much toward hypothyroid. My husband takes quinine for years for muscle aches due to knee surgeries causing cramping/muscle aches and then when they took the drug off the market, he now drinks the tonic water like you all are talking about. I found too that calcium/magnesium helps yet I do that with the approval of my doctor as magnesium is supposed to help with that and it’s helped my husband too.

Then I also read medical literature yet I forget where as I in 2+ years I’ve read a lot of medical information and discussed with many endos and regular doctors and naturopathic type doctors about Graves and thryoid and that post RAI also some people can have more joint pain. Funny because I’m having a pretty rough time with that myself; so I can certainly relate to joint/muscle pain and for myself I am hoping in time when these doctors of mine get my levels perfect for me, that this too shall subside; plus I plan on getting my blood work done on certain vitamins and minerals as sometimes electrolytes can be off. Plus I put on so much weight on Methimazole and then post RAI and even with a very good diet and exercise program I cannot lose (not gain, yet not lose either) so I know for my height I’m still too heavy and that probably is not helping either with my joints and muscles.

I also heard of some trying out Armour Thryoid to help yet there is that caution with the T3. I never had any of these problems prior to Graves as I was also athletic for years even up to 51. Seems not everyone has the same symptoms yet I have heard of others who had the joint/muscle problem with their thyroid disorder. Good luck with this! ….beach

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