Muscle and joint pain: Nine months ago I started... - Thyroid UK

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Muscle and joint pain

Rudy1
Rudy1

Nine months ago I started to experience sever muscle and joint pain primarily in my knees, right arm, and stiffness in my fingers. It feels like arthritis. I started seeing an endocrinologist and have been on several different thyroid medications including Armour thyroid medication. No improvements on any medications. Endo sent me to a rheumatologist to rule out other issues. All tests were negative. Does anyone have suggestions for treating inflammation due to thyroid medication? At this point I think that's my only option. Endo is at a loss and claims to have not seen this problem before. Thank you!

55 Replies
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Hidden
Hidden

I've had very similar problems for 20 years, starting around the same time I was diagnosed with severe autoimmune hypothyroidism. I've been taking thyroxine since then but the permanent symptoms you describe have been increasing as the years go by. It got worse after I had a flu virus one year. Sometimes it's like you've been hit by a bus Endo and rheumatologist have said the same to me as to you. No pain killer helps nor any other medication. Sorry I can't offer a solution but it's good to find someone with the same chronic symptoms! I never give up and I find exercise and stretching helps both physically and mentally. I went on an NHS chronic pain management course & that was very good.

Rudy1
Rudy1 in reply to Hidden

Thank you! Good luck to you. I still try to work out but it is difficult.

Hidden
Hidden

Also Rudy1 I find it incredible your endo says they've never seen these symptoms before!! The endo I saw also didn't suggest any connection. Since joining this forum I've realised they're classic symptoms of thyroid conditions and very common - the posts here prove that!

Baobabs
Baobabs in reply to Hidden

Yes I also experience pain, stiffness and bone aching but all my 6 Endo's say it is nothing to do with Hashi's. Funny how these symptoms are much worse when I'm under medicated!

I too suffer with various aches and pains - I have Hashi's and Crohns. How is your gut health ? - as it seems if your gut is inflamed then it can affect other body parts. How is your VitD ?

Rudy1
Rudy1 in reply to Marz

My vitamin d levels are good. I eat very healthy but will research about inflamed gut. Thanks so much.

Marz
Marz in reply to Rudy1

How good is good for your VitD ? Is it around 100 ? Are you taking a maintenance dose ? Sometimes we are not what we eat - but what we absorb. Especially true as we age :-(

Rudy1
Rudy1 in reply to Marz

Marz I just checked my results. I'm at 32, so at the low range for my vitamin D. I'll start taking a maintenance dose to see if that helps. Thanks so much.

Marz
Marz in reply to Rudy1

Is that nmol/L or ng/L ? If it is the first then around !00 would be good. If it is the second then around 60 would be good ! How much are you considering as a maintenance dose ? Around 3000 iu's daily and then re-test at the end of winter. Co-factors - magnesium and VitK2-MK7 would be good too.

vitamindcouncil.org

What was your B12 tesult ??

Rudy1
Rudy1 in reply to Marz

It is ng/L for my vitamin D. I have purchased 2000 iu vitamin D and 250mg Magnesium

Thank you Marz

Rudy1
Rudy1 in reply to Marz

Also I do not see that they tested my B 12.

Will have that added when I go this month.

Marz
Marz in reply to Rudy1

... and the Folate. B12 & Folate work together in the body in an importxnt way so B12 is good over 500 to prevent cognitive decline and lots more. Folate good mid-range 😊

Baobabs
Baobabs in reply to Marz

For this very reason I think everyone, regardless of health issues should take advantage of a yearly general blood test. Mind you many doctors would plead 'in range' and if you were not astute you would accept this. Some of the vit/mineral ranges look as broad as the Gulf of Mexico!

Marz
Marz in reply to Baobabs

Hereby lies the problem - too many are told they are 'normal '- which of course leaves them happy but ...

Baobabs
Baobabs in reply to Marz

So much wading through treacle in so many health services when mental resistance is low.

Dramlouie
Dramlouie in reply to Marz

I went to the doctor for stiffness and joint pains, I am on NDT and have Hashimotos although my doctor said we all have antibodies! I had lots of blood tests and was told by the receptionist that I was normal. I asked for a print out and at least 3 were out of range pointing to liver. I find its very useful to get print outs as previous test results can be compared. The test results were seen by a different doctor to who I saw and this is the problem, fobbed off by another doctor. This is the third surgery I go to and have now seen all the practice doctors. I get more information on here than from the doctors.

Rudy1
Rudy1 in reply to Marz

Hi Marz- I just came across this old post. Just an FYI. It turns out that my whole body was inflamed. I'm on a bunch of supplements so I'm all good now! Thank you for your advice!

Marz
Marz in reply to Rudy1

Good news ! ⛑

Hi,

We might be able to help you more with more specific info such as:

which thyroid meds including dosage levels @ combinations. & the reference levels. Have you had T3 texted at all?

So re thyroid meds, Levo T4 only/T4 & Lio T3 combination/T3 only?

If you haven’t tried/trialled T3 only its possible you don’t tolerate T4 or your body is failing to convert T4 - T3

Also, have you had your vitamins & minerals checked? Have a look at the Medichecks thyroid check Ultravit for must of the key ones .

Hi Rudy1 can I ask how old you are?

Rudy1
Rudy1 in reply to traet02

Yes I am 61. I was very active and worked out 5 days a week. This came on pretty quickly. When I stop taking thyroid meds the pain goes away.

Thank you

traet02
traet02 in reply to Rudy1

Hi Rudy I have a friend at work who is the same age as you we became friends when I saw her struggling to get out of her chair at work, I asked if she was ok, that's when I found out we were both hypothyroid. She is well today her pain has gone, she had made the link to her problems herself too and paid private to see the expert in thyroid problems Dr Toft who gave her what she needed to go to her doctor to ask for T3 treatment. He told her that everything else had failed for her and that he thought her body was not converting T4 to T3. She had a struggle with getting the T3 from the doctor but when she did it was a matter of days before she was feeling better. That's over a year ago since she was given the T3 and i now see her whizzing around the office which is a transformation. She says she no longer suffers from the pain but she does still kind of goes up and down in lab results but on the whole i think she may have cracked it. I was speaking to her today at work and I'm now seriously thinking of booking in with Mr Toft too. So there is another link T3.

Rudy1
Rudy1 in reply to traet02

Thank you so much. I will ask my dr about t3 medication. Thank you for replying.

traet02
traet02 in reply to Rudy1

Good luck

Rudy1
Rudy1 in reply to traet02

Thank you!

DippyDame
DippyDame in reply to Rudy1

Sounds as if you do not tolerate Levothyroxine/T4 .

It may also be that you are not adequately converting the storage hormone T4 to the active hormone T3 resulting in a build up of excess T4 which can cause problems.

However, it takes more than a few days for T4 - which has a half life of approx 7 days - to leave the body. How long after you stopped taking levo did the pain ease?

Have you tried changing the brand of Levo, you may be reacting to a 'filler' in the brand you use.

Suggest you post any test results, with ranges, they should include -

FT4, FT3, Vit D, Vit B12, folate and ferritin.

Well informed people here will advise.

Only once the above vits and mins are optimal and able to fully support conversion - but with no great benefit- should you consider adding T3.

Good luck

DD

I went through all you have with doctors and endocrolygsts Rudy to find my own diagnosis as low oestrogen due to being peri-menopause. I reluctantly asked for HRT after doing my own reasearch for the past couple of years after gettting nowhere with doctors, they ended up giving me the diagnosis of Fibromyalgia. I refuse to accept this diagnosis as I feel they can now check me off as they have given me a label and I won't be bothering them with my pain anymore. Well they got me wrong, I didn't stop at that diagnosis. I have been in immense pain feeling disabled at times which has stopped me from leading a normal life, I have taken time off work due to pain and also stress from having to deal with medical team and not being believed. I had the mirena coil fitted earlier this year and discussed my problems with the gynaecologist who was a woman of about 60 yrs old and she was miffed as I told her all about my journey with medical experts, she fully agreed with me saying that doctors still have a lot to learn on a womans journey through the change stating that she has seen it many times and it trying to get doctors to see the link too. She told me to go to my doctors and ask for the HRT as I said I wanted to go on it for the pain. I asked for HRT and the pain has dropped significantly to background pain. I tried to tell doctors and endocrolygists that I believed the link was between hypothryroidism and the drop in oestrogen as I'm now 51 but none of them would have it. I have spoken with at 5 doctors and 3 endocrologysts and had bone scans for arthritis and the experts there said they couldn't find anything either and advised me the only thing I could do was to manage it with physio and pain killers. I can now walk properly again with HRT. I was really worried I may have something else before I made the link with hormones. I'm still not out of the woods as I also want rid of the background pain but doctors are reluctant to up the HRT dose. Sooo my next stop will be CBD oil, preferably prescribed from the doctor since they can't give me any thing else. I would be disabled today if I had listened to the experts that's how much pain I have been in. I hope this may help someone who may be in the same boat as me.

Rudy1
Rudy1 in reply to traet02

Thank you for replying. I am no where as severe as you. So happy you're better. I am 61 so through menopause. I will look into HRT. Thank you again.

Rudy1
Rudy1 in reply to traet02

Traet02- Just checking back on older comments. I've been put on cbd oil and it's made a huge difference. I have just started on Bioidentical hormones which are plant based so no risk of breast cancer. How have you been feeling?

Kim327
Kim327 in reply to traet02

Hi had to reply because I Just went on estrogen patch just over 2 weeks ago. Turing 49 this year. Reason was severe drop in Estrogen and the pain I have every single day in my arms shoulders, hips and legs. I felt the brain fog lifted shortly after the patch but pain remains, it’s only been just over 2 weeks. I’m praying for relief. Like you been to 12 specialists and next is Rheumatologist. My Gynecologist recommended and ENDO agreed on the patch too. I don’t want to stay on forever but I am desperate for relief....Terrible year for me!!

Graves diagnosed Feb 2019 and after 10 months thyroid levels are normal but not feeling so normal yet! Getting passed along to so many specialists and countless blood tests, MRIs CT scans and xrays has been clearly frustrating and depressing! I don’t know why this is happening!

Wish you well!!

Rudy1
Rudy1 in reply to Kim327

Kim, subsequent to this post I was put on bioidentical hormones which are plant based. Maybe ask your gynecologist about that. They are supposed to be safer.

I went to a functional medicine dr and he put me on magnesium, cbd oil, omega 3's, vitamin D, I'm not sure which is helping but I feel great.

I start to get achy if I don't take everything. I can even workout again.

I have severe inflammation and I believe I don't tolerate Levothyroxine well without these supplements. Good Luck. I know how frustrated you have to be.

Kim327
Kim327 in reply to Rudy1

Hi Rudy!

Thank you for your reply and information! I hate that I can’t workout at all anymore! I envy everyone who can ride a bike or get on the treadmill. I have no energy and the pain! Ugh!!!

Heard CBD oil may help but there are so many out there and don’t want to be scammed. I have magnesium spray I’ll try agin and I am on D. How much Omega 3 do you take?

So happy to hear someone found relief! Sometimes I just feel like they just haven’t found the root of my problem and I have had absolutely everything (I believe) checked by over a dozen different specialists this year. MRIs, CT Scans, XRay and blood work. Now I lay here at night and feel inflammation pain on the left side of my body_ next is Rheumatologist in March after my deviated septum surgery. Also having epidural injections because my neck and left arm are the worst.

Any info of what brand you use would be greatly appreciated!!!!

Thank you again!

Rudy1
Rudy1 in reply to Kim327

Oh please try this. It was mainly my left side too. I take 4 magnesium capsules a day 300 milligrams a day. You have to get high quality. I buy through my drs website but I'm in the US.

I take 2 omega 3 a day. 500 EPA/250 DHA

I buy all my supplements from his site. (Except for vitamin d)

I'm not sure what helps but I felt better immediately.

I did have to see a chiropractor to fix my arm. She did cupping.

I was on the verge of frozen shoulder.

I really hope you get better. 🙏

Kim327
Kim327 in reply to Rudy1

Thanks Rudy so so much!!!!! Definitely will try this!

I’m in the U.S. too!!! What’s the website?

Rudy1
Rudy1 in reply to Kim327

I don't think I can suggest a company on this site so I'll figure out how to message you.

Did your issues start when you went on thyroid medicine?

Rudy1
Rudy1 in reply to Kim327

I just sent you a private message.

Kim327
Kim327 in reply to Rudy1

I’ll also ask my OBGYN about plant based hormones too!!!! Thank you !

Could be nutritional deficiencies - which most hypos have. Have you had your vit D, vit B12, folate and ferritin tested?

Rudy1
Rudy1 in reply to greygoose

Know that I've had my vitamin D and B12 tested. Will check on the others.

When I stopped taking my thyroid meds for a few months, my pain went away but my hair started falling out. Thank you for replying.

greygoose
greygoose in reply to Rudy1

That often happens. But, it doesn't last. :(

So, what were the results of your vit D and B12?

Try taking some zinc, and see if that helps.

Rudy1
Rudy1 in reply to greygoose

My vitamin D and B 12 are fine. Will try the zinc. Thank you!

Marz
Marz in reply to Rudy1

How fine is fine ? 😊

Rudy1
Rudy1 in reply to Marz

Hi Marz. I now know that my vitamin D levels are too low although within range. 32 ng/ml. Range is >29 ng/ml

My b12 is 525. 211 - 946 is required range.

I'm going to try hormone replacement reluctantly

Thank you.

Marz
Marz in reply to Rudy1

VitD would be better around 60. So keep up wih your supplements. A good B Complex should keep all the B vits in balance.

I have not ever taken HRT so cannot help you there. What is your FT3 level ?

Rudy1
Rudy1 in reply to Marz

My FT3 is 2.83pg/ml. Range is 2-4.40 pg/ml

Thx

Marz
Marz in reply to Rudy1

T3 needs to be higher and could be the cause of your pain. When B12 - Folate - Ferritin - VitD are OPTIMAL you may have a better level of T3 due to improved conversion from T4 ..

Rudy1
Rudy1 in reply to Marz

Hey Marz- my Folate is 16ng/ml. 4:50-16.00 and Ferritin Is 151 13-150 so I think I'm good there

My thyroid levels are way off because my pain got so bad this summer I stopped taking it altogether. I resumed taking it when my hair started to fall out. I still can't take it every day.

I'm going to request my vitamin d levels checked again and looking into hormone replacement. Thx so much for your advice.

I have to agree with you on the meds too as i did six weeks of not taking my medication and the pain also went then but because I was suffering so bad with now having a dangerously low thyroid due to six weeks off them I had to go back on the meds so my last resort was HRT and it definetly helps.

This sounds like under medication to me. I have no thyroid and no other health issues either so starting from Zero. I take NDT twice every day. The first dose at 6am by the time 12 noon arrives I have a pain in my ankle that I broke over 30 years ago. As soon as I take my afternoon dose it disappears, weird but lack of T3 comes to mind.

Other pain sometimes happen in my hands too. I never had a single pain in my body until my thyroid was removed in 2015.

Bunnyjean this us what my endo says but when I go off of my synthroid, my pain goes away. The closer my numbers get back to normal range, the more pain I have. Very confusing. Thank you for replying.

Marymary7
Marymary7 in reply to Rudy1

You should get all your results and put them on here and you will be surprised at what is actually NOT 'fine'. They fob us of or just do not understand that bottom of the range is not fine enough.

Good luck.

danym
danym in reply to Rudy1

did you find something that worked for you?

Danym- I am seeing a holistic doctor now. He put me on 10,000 IU of vitamin d3, and 500 EPA of Ultra Omega 3. I think what is helping me the most is CBD oil. I feel better but not perfect. I still can't workout

The latest thing he's done is to put me on bioidentical hormones, but that was just last week. So try cbd oil if you haven't already. I feel a difference when I skip a dose. I've seen 5 doctors and not one thinks my pain is due to my thyroid medicine. I am still not convinced of that. Best of luck to you!

Hi I too suffer terrible pain in my joints. I walk around looking like a 90 yr old - Im just 62. Some days by the time I get home from work all I want to do is cry. I have hip and thigh pain and a limp. I had RAI 2 years ago. Today I found out that it is a rare side effect of levothyroxine!!!!

Rudy1
Rudy1 in reply to Noisette13

Noisette- please try some of the supplements that I mention in my post above

I have very little pain now. It feels like a miracle to me. Thx

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