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coloradogirl
@coloradogirl

Posts: 29
Joined: Nov 02, 2016

Thyroid and Body Pain

Posted by @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.

REPLY

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?

@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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Hi @lisalucier

Yes, although with the many medication changes, I suspect I may be hyperthyroid on the latest dose. There is a supply problem with NatureThroid so instead of getting the dosage I needed, we had to go to a higher dose of Armour. I have to wait six weeks for the next testing to be sure, but I’m feeling a bit hyperthyroid. At least my hair isn’t falling out yet….and the body aches continue.

Well, so I may just have answered my own question. The body pain was bad enough today that I took some OTC pain relievers. Once I get the pain settled down, I’m noticing a burning sensation in my feet. I’m pretty sure that means neuropathy, so I guess I’d better go see my doc again. Thanks @lisalucier for your help.

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?

@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 While I don’t have problems with my thyroid, I empathize with you in the chronic body ache. I have Fibromyalgia and when my symptoms first started, I felt similar to the feeling of heaviness and soreness that are associated with the flu. Then I started tuning in to my body and tracking where the pains were the worst. Lo and behold, I was diagnosed with Fibro. Coloradogirl, have you had any exam that may indicate fibro? What are you doing to get some relief?
Jen

Hi @coloradogirl, It’s great that you are doing your own research and learning as much as you can about your health. I agree with Lisa (@lisalucier) that it might be helpful to look around in the Neuropathy Group to see if you there are some discussions you might find helpful. Mayo Clinic has some information on Burning Feet Syndrome here: https://www.mayoclinic.org/symptoms/burning-feet/basics/definition/sym-20050809#013. I do think it’s a good idea to discuss the symptoms with your doctor.

There is also a Burning Feet Syndrome discussion in the Brain & Nervous System Group that might be good to read through here:
https://connect.mayoclinic.org/discussion/burning-feet-syndrome/bookmark/?ajax_hook=action&_wpnonce=1fdf087f7c

My neuropathy is just numbness and tingling in both feet from the toes to a little above the ankles. I’m lucky to not have the pain associated with my small fiber peripheral neuropathy. I would recommend that you look around in the Neuropathy Group to see if you find any discussions that are helpful and then ask any questions you may have. You can also start a new discussion in the group if you can’t get an answer to your questions.

John

@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 @lisalucier and @johnbishop. Thanks for your help and concern. I’ve had non-specific leg pain at night for several years now. My doc is great but honestly hasn’t been all the interested in figuring it out because there are so many possible causes that we already know about.

I am hypothyroid and have type II diabetes (although very tightly controlled with diet and my A1C is typically under 5.5). I had obstructive sleep apnea until I started running a couple of years ago. I eventually had to give up the running because the chronic pain + the orthopedic pain from being a heavy 50+ year old runner was just too much. I was hoping that the running would help me lose weight (which the doc thinks would resolve most of these issues) but it didn’t. In fact, at first I actually gained a few pounds due to increased muscle mass.

The burning sensation in my feet is recent and pretty mild but was kind of a tip-off that this could be neuropathy, which could explain the rest of the pain as well. The burning sensation is limited to my toes / ball of the foot right now but I have little “electric shock” feelings in my hands from time to time as well as random stabbing pain or itching from time to time. A few days ago, it was in my ribs and last night, it was in my shin.

I’m honestly trying to decide whether it makes sense to go back to the doc again about this. At a certain point, they get tired of talking about issues that they can’t resolve. They went along recently with a bunch of testing for other auto-immune issues (such as celiac and rheumatoid) but when that all came back negative, I’m wondering if they will just think I’m a hypochondriac.

@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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Hi @sandytoes14 and thanks for the response. I have thought about fibro but it doesn’t seem like there are a lot of treatments for it, so I wasn’t sure if it was worth pushing my doc for yet another diagnosis. (I already have several…see response to Lisa and John below).

The main treatments for fibro that I’ve seen involve anti-depressants and I am trying to avoid those if possible because Zoloft made me manic. (It was fun….until the credit card bill came).

As for what I do for relief, that is an excellent question and I will admit that I really don’t have a good answer. I have a foam roller and inversion table. I take a lot of Epsom salt baths. I also see a chiropractor and acupuncturist regularly to address orthopedic pain and headaches, which helps at least keep the overall pain “burden” lower. For chronic pain, I just try to ignore it to the extent that I can because I don’t want to overuse OTC meds like Tylenol or Ibuprofen. (Especially the latter, we have a high incidence of heart attack and stroke in my family so I don’t want to raise my risk factors if I don’t have to). If it gets really bad, like it was earlier this week, I do take the OTC pain relievers.

A friend who has fibro actually suggested that I try medical marijuana for my pain (it’s Colorado so it’s legal here) but I’m not really comfortable with that either.

Any suggestions you have would be welcome. I’ve been living with this for years now and I have to admit that better coping strategies would really help improve my quality of life.

@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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Hi @coloradorgirl, another possibility to help with the pain are some form of compounded medications that can be applied directly to the area where you have the pain. A compounding pharmacy or pharmacist can do this. We had a speaker at one of our Minnesota Neuropathy Association’s meetings earlier this year – Nick Rich, PharmD (doctor of pharmacy), a compounding pharmacist, owner of Lake Elmo Pharmacy, spoke to us about: alternative treatments to conventional medicine for the treatment of neuropathic pain. He explained what a compounding pharmacist does, and how it may be different from what your pharmacist does. He has over 13 years of experience as a compounding pharmacist, and is one of two accredited compounding pharmacies in Minnesota. The other compounding pharmacy being the Mayo Clinic in Rochester. In Minnesota you have to be on the state’s list for chronic pain before you can get the stuff but one of our neuropathy association members actually used it with positive results for relieving the pain. Here is a link to the pharmacy’s website for more information:

http://www.lakeelmopharmacy.com/pain-management-2.html

Since you live in Colorado it may be easier for you to get a topical cream that will help with the pain/burning feet. I would check to see if there are any compounding pharmacies or a PharmD available close to you.

Happy Friday!
John

@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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Hi John! I actually used to underwrite Pharmacists’ Professional Liability insurance so I know all about compounding pharmacies and PharmD’s. They are great and can be really very helpful especially for unique situations like this.

We did have a compounding pharmacy here in town but they were shut down by the FDA for some illegal practices. (Not sure exactly what happened, but I read that they were making things they should not have been). I think there is another compounding pharmacy that opened nearby, so I could probably use them. The challenge will be getting a prescription from a doc that seems to think it’s yet another symptom from my various other issues and not to be taking all that seriously.

Thanks again for your help.

@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 is it possible to talk with the pharmacy and see if they have any local pain doctors that have sent them prescriptions? Just thinking if a doctor is already prescribing compounded medications they may be more informed on their use and benefits (yucky side effects and brain fog from the standard NP prescriptions).

Just a thought…
John

@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

Good point @johnbishop and definitely something to think about. I’m going to try again with my regular doc this afternoon and see what they say. The challenge with a topical treatment is there are times when the pain is over pretty much my entire body – it’s almost flu-like symptoms the way my whole the body aches.

If it was just the burning in my feet and tingling in my hands, that’s mild enough that for now I can ignore it most of the time. (It’s a nuisance but not terrible). The worst is when I get up in the morning. I’m so stiff I can hardly move and everything hurts for a good hour or more, unless I take OTC pain meds, which I’m trying not to do too often.

My chiropractor recommends CBD oil, which I’m also thinking about, but not sure if that’s the route I want to go at this point either.

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.

@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.

@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.

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