Thyroid and Body Pain

Posted by coloradogirl @coloradogirl, Dec 13, 2017

Hi everyone – Wondering if anyone has any experience with chronic body pain and thyroid issues. The list of possible symptoms from being hypothyroid is overwhelming and to be honest, I’m often not sure if what I’m seeing online is a real list based on science or made up by someone trying to sell supplements.

We’ve finally got my medication to the point where I’m no longer hypothyroid, but I still have body aches all the time. It’s better some days and worse others. The last couple of days it’s been quite bad and even my skin hurts.

My doc just finished testing for a whole slew of other auto-immune issues including rheumatoid arthritis and celiac. Everything came back fine, so that doesn’t explain it. I’m wondering if this is really worth pursuing (given that we have a very high deductible and it’s about to roll over) or if it’s just one of the fun parts of being a thyroid patient and I need to just deal. Thanks in advance for any advice / experiences that can help.

Hi y’all. Been struggling with pain and depression and things became worse when the new PCP person changed my dosage for the Nature-Throid. Even ended up at the cardiologist since this newbie thought my symptoms were my heart-Duh. Certainly did not want to get off on the wrong foot with the newbie so played along and ended up wishing I had been brave enough to speak up for myself. Nature-Throid is different to work with than the synthetic (allergic to name brand and generic). Heart is fine and now there is a cardiologist wondering why I was sent there in the 1st place. I don’t think the newbie won any points with him. I tried to tell the newbie (the PCP I was currently seeing relocated due to family illness) the change in thyroid med dosage was not a good idea-oh well. What does an old, tired, useless person know about such things? Takes a while to get things back on track. She is currently in Haiti helping the needy there. Sure hope she helps them more than she did me. I think her mind was more on her good-will trip than her patients here.
When it comes to the thyroid a lot of quirky things can happen when it is off kilter. My depression and pain are bad enough w/o having the thyroid med mucked with. My theory is, if it is not broke why fix it?? The only med I take and since I was new to her she had to change something-Currently hoping she stays in Haiti!!! Now trying to get my pain and depression back under control in hopes of enjoying Christmas w/ my grandkids.
My apologies as my mood is anything but festive right now.
Be sure the doc you see has their numbers right as being hypothyroid can wreak havoc with your life.
Thanks for a chance to vent.

REPLY
@parus

Hi y’all. Been struggling with pain and depression and things became worse when the new PCP person changed my dosage for the Nature-Throid. Even ended up at the cardiologist since this newbie thought my symptoms were my heart-Duh. Certainly did not want to get off on the wrong foot with the newbie so played along and ended up wishing I had been brave enough to speak up for myself. Nature-Throid is different to work with than the synthetic (allergic to name brand and generic). Heart is fine and now there is a cardiologist wondering why I was sent there in the 1st place. I don’t think the newbie won any points with him. I tried to tell the newbie (the PCP I was currently seeing relocated due to family illness) the change in thyroid med dosage was not a good idea-oh well. What does an old, tired, useless person know about such things? Takes a while to get things back on track. She is currently in Haiti helping the needy there. Sure hope she helps them more than she did me. I think her mind was more on her good-will trip than her patients here.
When it comes to the thyroid a lot of quirky things can happen when it is off kilter. My depression and pain are bad enough w/o having the thyroid med mucked with. My theory is, if it is not broke why fix it?? The only med I take and since I was new to her she had to change something-Currently hoping she stays in Haiti!!! Now trying to get my pain and depression back under control in hopes of enjoying Christmas w/ my grandkids.
My apologies as my mood is anything but festive right now.
Be sure the doc you see has their numbers right as being hypothyroid can wreak havoc with your life.
Thanks for a chance to vent.

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Hi @parus, I totally get it. I’ve had Hashimoto’s Thyroiditis for over two decades now, so my doc / PA and I review the numbers together and decide when we will change my meds and when we won’t. It took me a long time to find a practice where they would listen and treat me as a partner in my own healthcare, but it was worth the effort.

One other thing I want to mention is that there is a supply issue with NatureThroid in the U.S. right now and only the 65 mg seems to be available. I don’t know if that was factor in changing your meds, but it was an issue with mine.

Perhaps you should try a new practice for your primary care and see if you can find someone who will be better to work with? It never hurts to get a second opinion. One thing I did was to read online reviews from patients to help find someone who would listen and treat me with respect rather than talking to me like a child (which can be a problem with some docs).

Best wishes – thyroid disease and all its many symptoms sure can make you crazy sometimes.

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@coloradogirl No problems getting this dosage here. I can only take 3/4 of a 65 mg. Yes, it can make one crazy at times. I will likely ask to see another doctor in this health care system or get a referral back to the endo doc. My thyroid does not produce any hormone.

REPLY
@parus

Hi y’all. Been struggling with pain and depression and things became worse when the new PCP person changed my dosage for the Nature-Throid. Even ended up at the cardiologist since this newbie thought my symptoms were my heart-Duh. Certainly did not want to get off on the wrong foot with the newbie so played along and ended up wishing I had been brave enough to speak up for myself. Nature-Throid is different to work with than the synthetic (allergic to name brand and generic). Heart is fine and now there is a cardiologist wondering why I was sent there in the 1st place. I don’t think the newbie won any points with him. I tried to tell the newbie (the PCP I was currently seeing relocated due to family illness) the change in thyroid med dosage was not a good idea-oh well. What does an old, tired, useless person know about such things? Takes a while to get things back on track. She is currently in Haiti helping the needy there. Sure hope she helps them more than she did me. I think her mind was more on her good-will trip than her patients here.
When it comes to the thyroid a lot of quirky things can happen when it is off kilter. My depression and pain are bad enough w/o having the thyroid med mucked with. My theory is, if it is not broke why fix it?? The only med I take and since I was new to her she had to change something-Currently hoping she stays in Haiti!!! Now trying to get my pain and depression back under control in hopes of enjoying Christmas w/ my grandkids.
My apologies as my mood is anything but festive right now.
Be sure the doc you see has their numbers right as being hypothyroid can wreak havoc with your life.
Thanks for a chance to vent.

Jump to this post

@coloradogirl

Thanks for your reminder about second opinions – always a good idea!

Teresa

REPLY
@lisalucier

Hi, @coloradogirl — you pose an interesting question. Let’s see if any of our fellow members who are knowledgeable about thyroid conditions may have some insights for you on thyroid issues and chronic body pain, like @vdouglas, @sunshine49, @sandytoes14, @parus, @whiterose67, @gailb and @lillyanne.

Also, just wanted to clarify that the thyroid issue you’re referring to is hypothyroidism?

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You are correct that most medical treatment are anti depressants. Savella and Cymbalta are specific to Fibro. Some doctors prescribe Effexor also. SSNRI ‘s are most effective for many. Lyrica is also used, which may help with neuropathy. The complementary medicines you are using, i.e. Accupuncture and chiropractic have worked for me at different times. I was diagnosed six years ago and have found that treatments, including medicines that once worked, may not now. The same is true in reverse.
There are many folks who swear by CBD oil and cannibus. If you go to the search box and enter CBD oil, a good deal of results will come up. My apologies for not providing the link. I’m on my phone typing this reply.
Coloradogirl, from reading your posts, I can tell you are a good self advocate. I’m glad you found Connect. Please keep sharing with us!

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As to anti depressants being prescribed for fibro-I ended up with serotonin syndrome with shrinks that did know what they were doing and did not believe my pain was real. Escaped all of thus and will not be caught up in this type of thing again just because of doctors that cannot tell good cow-pies from apple butter.
Stuff happens and I have learned to stay a way from shrinks as my physical pain is real and an anti depressant is not the answer for me as the side effects were dreadful.
What works for one may not work for another.
CBT has helped me far more than medications. I know anti depressants help many and I would like to be one that is helped. Far too oft the doc’s prescribe and do not follow up.
A word of caution-don not go off of these type of meds cold turkey. I went off a boatload and the only reason I did not have a grand mal seizure is because of a VNS which was removed in 2010. I knew this when I went off so many meds that same year. There is no way to describe how awful the whole experience was or the long term damage caused by those that were prescribing. It happens. I do still struggle with resentment over the physical damage done by inept doctors. Nothing I can do but continue to try and do better for myself.

REPLY

@parus That’s a great lesson to learn for all of us, Parus. Especially the second sentence. Sometimes we have to work with a doc a few times before we can get a true picture of their abilities. We also learn soon to beware of lazy medicos who are always too tired to make a 60 second phone call to Mayo or Alnylam or even their practice partner. And finally, if the medico will not talk to the patient about what they find in the patient, We must just assume they ignored everything.

REPLY
@parus

Hi y’all. Been struggling with pain and depression and things became worse when the new PCP person changed my dosage for the Nature-Throid. Even ended up at the cardiologist since this newbie thought my symptoms were my heart-Duh. Certainly did not want to get off on the wrong foot with the newbie so played along and ended up wishing I had been brave enough to speak up for myself. Nature-Throid is different to work with than the synthetic (allergic to name brand and generic). Heart is fine and now there is a cardiologist wondering why I was sent there in the 1st place. I don’t think the newbie won any points with him. I tried to tell the newbie (the PCP I was currently seeing relocated due to family illness) the change in thyroid med dosage was not a good idea-oh well. What does an old, tired, useless person know about such things? Takes a while to get things back on track. She is currently in Haiti helping the needy there. Sure hope she helps them more than she did me. I think her mind was more on her good-will trip than her patients here.
When it comes to the thyroid a lot of quirky things can happen when it is off kilter. My depression and pain are bad enough w/o having the thyroid med mucked with. My theory is, if it is not broke why fix it?? The only med I take and since I was new to her she had to change something-Currently hoping she stays in Haiti!!! Now trying to get my pain and depression back under control in hopes of enjoying Christmas w/ my grandkids.
My apologies as my mood is anything but festive right now.
Be sure the doc you see has their numbers right as being hypothyroid can wreak havoc with your life.
Thanks for a chance to vent.

Jump to this post

@parus I find it so frustrating to have to change doctors, especially when I have had one that I was “in-sync” with for my treatment. As for Christmas, My son is coming to visit my husband and I and I am very excited. I figure I’ll have pain no matter what, right?! I hope you get to feeling better to enjoy your family. Merry Christmas!

REPLY
@lisalucier

Hi, @coloradogirl — you pose an interesting question. Let’s see if any of our fellow members who are knowledgeable about thyroid conditions may have some insights for you on thyroid issues and chronic body pain, like @vdouglas, @sunshine49, @sandytoes14, @parus, @whiterose67, @gailb and @lillyanne.

Also, just wanted to clarify that the thyroid issue you’re referring to is hypothyroidism?

Jump to this post

I saw my PA on Friday and she did the test for fibro. I basically don’t have any of the trigger points, so it appears that’s not it. (She said we can leave it “on the table” but probably not the cause). She started me on Cymbalta and an anti-inflammatory medication that I can use when it’s particularly bad, so at least I have some treatment options for now. Next step is an EMG test for nerve function, focused on my legs to see if there is a lower back problem or something.

She also tested to see if I have any numb spots on my feet due to neuropathy and luckily, I do not, and my balance isn’t effected.

The process of starting on Cymbalta has been a bit interesting – not my first go-round with anti-depressants, so it’s familiar but not much fun. At least we have a plan for now and hopefully the Cymbalta will help. So far, it’s not doing much for the pain but it’s only been a few days and I understand it can take 4-6 weeks to really show an effect.

REPLY
@lisalucier

Hi, @coloradogirl — you pose an interesting question. Let’s see if any of our fellow members who are knowledgeable about thyroid conditions may have some insights for you on thyroid issues and chronic body pain, like @vdouglas, @sunshine49, @sandytoes14, @parus, @whiterose67, @gailb and @lillyanne.

Also, just wanted to clarify that the thyroid issue you’re referring to is hypothyroidism?

Jump to this post

@coloradogirl I’m glad you have some treatment options. Two years prior to being diagnosed with Fibro, I was tested but, like you, had no trigger points. It wasn’t until I had trigger points that my Dr put me on Savella. It worked for a while but now I take Cymbalta 60 mg once daily. I surely hope Cymbalta helps you with minimal side effects.

You may find this post helpful.
What distracts you from pain https://connect.mayoclinic.org/discussion/what-distracts-you-from-the-pain/

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@lisalucier

Hi, @coloradogirl — very interesting deduction work on your part! If neuropathy is a possibility, have you met the Mayo Clinic Connect moderator who works with our Neuropathy group, @johnbishop? This is the group I’m speaking of: https://connect.mayoclinic.org/group/neuropathy/.

Are you noticing any burning sensation anywhere else, or is it confined to your feet?

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Hi @coloradogirl. I have some similar situations. Also hypothyroid, not diabetic A1C is 5.4. But while becoming hypo 20 years ago, my legs, calves, bi lateral became very very weak. I have the same electrical feelings running down my legs, more in my left leg. Sometimes it feels like I have batteries in my body. I have to take pain killers for my legs. This is going on for so long. I also notice when I don’t sleep well, which is often, the pain is much worse. I have been to over 100 dr’s in the 20 years and they get tired when hearing my symptoms. Medical marijuana is very hard to get here on Long Island but I have heard a lot of positive feedback. Doctors really don’t care, that is what I have found. Been told I have fibromyalgia but due to the opioid crisis I can’t find a pain management doctor. It really has been a horror.

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Hi, @coloradogirl — wanted to touch base with you and see how it’s going with the chronic body pain?

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