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.

@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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@coloradogirl

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

Teresa

@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!

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.

@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.

@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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@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!

@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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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.

@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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@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/

@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.

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

@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 and @coloradogirl I am on Acella Natural thyroid, also have hashi’s. I take 2.5 pills a day of the 60mg – What I have found is these pills are very heavy on T3 and light on T4. The endo that I was using made me get off of natural thyroid and go onto synthroid because my T4 was around .7 not even in the normal range and my free T3 was over 5 which made me over the normal range. Well after 3 weeks on synthriod I felt horrible, even worse that the hypo hyper combo of the natural thyroid. No T4 was being converted and I had diarrhea but gained 10 lbs , was so tired most days I could not even get outside. I live alone and have a business so I could not continue this way. So my wonderful endo has not returned my phone calls and I went back onto the defective Natural thyroid. I mean why become a doctor if you can’t even be there when a patient needs you the most. This was the 4th time in 20 years that I tried to go onto synthroid and it never worked before and she knew all of this. Just wondering if either of you have found the natural thyroid is not well balanced? Prior to the last few months the T4 and T3 were always in sync the way they are supposed to be.

Liked by Parus

@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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@doxyjune I take Nature-Throid which is the generic of Amour. I cannot take the synthetic medication. What I take is more difficult to regulate than the synthetic. It is not uncommon for someone who has taken the synthetic (Synthroid or its generic) to have problems with it. I am allergic to to the Synthroid as well. Also not uncommon with one taking thus for many years. I am sorry you are having these difficulties. I am now so fearful of my current PCP I will not go back at the time. I need to have my thyroid levels checked. I am going to request to be once again referred to a specialist as the Nature-Throid is more difficult to regulate. I have gained 20 lbs and not a happy camper. I was dubious when the doc changed the dose, but did as I was told. My own fault for not being assertive enough. Trying to get the weight back off is difficult due to chronic (sometimes severe) pain. It can be very discouraging. Keep us posted as you can. My pain is worse due to an incorrect dosage and once again being hypothyroid. Very discouraging is it not?

@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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@parus When my endocrinologist moved away my PCP took over my thyroid and diabetes care. I think I will find another endocrinologist or go my old one again, he’s about an hour away. If you are on Medicare you should easily be able to just switch to going to a specialist. I too really do not trust my PCP, I have discovered he doesn’t know as much as he thinks he does. I think your situation, being a bit more difficult than typical, definitely warrants going to a specialist. If you are not on Medicare a referral from your PCP should be given. If not I would change PCPs.
We all at times are not as assertive as we should be.
JK

@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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@contentandwell (would that I were). I do have medicare. Fearful of the new PCP and hesitant to ask to be referred back to the endo doctor. The new PCP sent me to the cardio doctor. He asked me “why” I was there. I told him because I was referred there. He shook his head and said your heart appears fine. I felt humiliated because I told the new PCP it was a thyroid problem. By the time I saw a specialist my breathing was fine. I ended up telling him, “but them books and all they do is eat the covers”. The most appropriate way I could say I did not need to see him. My heart is fine-medically.

@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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@parus “I felt humiliated because I told the new PCP it was a thyroid problem. By the time I saw a specialist my breathing was fine. I ended up telling him, “but them books and all they do is eat the covers”. The most appropriate way I could say I did not need to see him. My heart is fine medically.” WOW! I wish I could take credit for saying that! I saw a doc yesterday whom I expected to be my local whiz on my stuff. She said she had talked to one of my other doctors about my issues, and that fellow said I really did not have proof I had the problem. He(the other doctor) is a nincompoop who I dismissed after a 10 minute conversation based on 50 year old research which he said was the “latest in the field”. I really don’t want to look for another doctor. I hear the closest is about 800 miles away, very difficult for local communication.

@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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@parus if you have Medicare you don’t need a referral from your PCP, you can just go. My PCP does always want to have a report sent to him and if you are seeing an endo that is probably appropriate.
I think I have toenail fungus and I asked my PCP who he would recommend. One of his nurses left me a voicemail telling me his recommendation and that I should see him for follow up 30 days later! I can’t figure out the necessity of that. I doubt that I will bother.
JK

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