Muscle/Joint Pain: I have been researching... - Thyroid UK

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Muscle/Joint Pain

SCarr998 profile image
26 Replies

I have been researching Hypothyroidism (diagnosed in November 2015) and I can not find a credible explanation for the cause of muscle and joint pains. Does anyone have any idea why it occurs and can you point me in the direction of any literature on the internet so I can do a little research.

I have asked my doctor and was met with a blank stare, the endocrinologist was a complete joke and was not worth the £225 I spent on seeing him.

I started experiencing muscle and joint pains and that caused me to go see my GP at which point I was diagnosed with Hypothyroidism. The pains have become much worse since starting T4 (but it could equally be due to the condition taking a turn for the worse). I have introduced T3 into the mix and I am now staring to see relief of the pain so I am currently experimenting with the correct T4/T3 combination. I may also try T3 only at some point and see if that makes a difference.

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SCarr998 profile image
SCarr998
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26 Replies
Jose651 profile image
Jose651

Hi SCarr998,

Have you had Vitamin B12 levels checked?

J

SCarr998 profile image
SCarr998 in reply toJose651

No, I was taking multi vitamins and vitamin D but they made no difference to the way I was feeling. I am going to ask my doctor to do a range of tests at the end of April as he only did T4 and TSH and now only does TSH.

Jose651 profile image
Jose651 in reply toSCarr998

Ask for B12, Folate, Ferritin and Vit D.

Get a copy of results and post them here and on the PAS forum within Health Unlocked.

Read all you can about B12 deficiency. As I found out, everything can't be put down to Thyroid.

J

NatChap profile image
NatChap

I would get vit d, B12 and ferritin checked. If you are deficient in any of those you do generally need very high doses to get your levels back up. Also with Vit D you need to take Vit K2.

SCarr998 profile image
SCarr998 in reply toNatChap

Yes I will do, thank you. Unfortunately my GP does not know much about Thyroid problems so he has told me he is out of his level of understanding.

The endocrinologist was a complete joke. He told me to reduce the amount of T4 (currently 150mcg, he wanted me on 100/125mcg) I was taking and wait 3 to 6 months and I should see some sign of improvement.

NatChap profile image
NatChap

If it is beyond his level of understanding then he should refer you to somebody else! Is there no other GP you can see?

SCarr998 profile image
SCarr998 in reply toNatChap

Already tried 2 at my surgery, the second one wanted to put me on antidepressants.

I also paid to see an Endocrinologist, that was a complete waste of £225. I have been referred to a specialist by my GP which will take 90 days. And it could turn out to be the same Endo that I have already seen.

NatChap profile image
NatChap

That's rubbish :-( I would ask for more tests but if they refuse then you can order them yourself. You need to be careful about supplementing in high doses if you haven't been tested though. Joint pain can definitely be caused by vit D deficiency. Maybe you could print off a bit of literature from Thyroid UK to take to show your GP?

SCarr998 profile image
SCarr998 in reply toNatChap

I think my current GP will be OK with the additional tests. I am going to tell him I am taking charge of my own care. I have already started taking T3 last Friday and that has improved my muscle and joint pains considerably. I am going to up the T3 dose on Sunday and see what the effect is.

NatChap profile image
NatChap

Good luck x

SCarr998 profile image
SCarr998

Thank you:-)

marsaday profile image
marsaday

Thyroid hormone works closely with cortisol.  So i think the joint pain is related to this area.  Joint pain can be described as arthritis and there are different types of this condition.  Cortisol is a key factor in arthritis.

So there is something going on with cortisol and thyroid.  I have found i don't get much joint pain with my hypothyroidism, but i have had it and i know it is related to the thyroid being unbalanced.  

Have you tried taking the T4 at bedtime.  I find it works much better this way and i think the reason is to do with cortisol production as well as thyroid production.  We make thyroid when we go to sleep.  TSH is at its peak before sleep so the body gets making the stuff straight away.  Later on in the night the body looks at what thyroid amount has been made and then makes the cortisol for the next day.  The two want to match each other for a good balance.

Low thyroid patients usually have low cortisol levels.  The two go together.  We also make hormones in the day as we react to energy output, but getting that solid base formed for the start of the day is very important.

Paul robinsons early morning T3 protocol aims to boost cortisol production, but i reckon taking T4 at bedtime also does the same.

SCarr998 profile image
SCarr998

Yes I am open to trying different things. I will keep things the same for the moment as I am going to increase the dose of T3 on Sunday and see how that works before I try changing when I take the T4.

Marz profile image
Marz in reply toSCarr998

If your levels of Ferritin - Folate - B12 - VitD are not OPTIMAL then thyroid hormones do not work well.  Be prepared that the Multi-vit will skew your B12 results which need to be around 1000 ....

SCarr998 profile image
SCarr998 in reply toMarz

I stopped taking the vitamins about a month ago as they were not making a noticeable difference. I started to feel like a rattle can with all the pills I was taking :-)  I will get tested and then take the relevant ones if I am low.

shaws profile image
shawsAdministrator

Yes, I can relate with your experience - much more joint/muscle pain when on levo. I don't anymore due to being on T3 only. I improved when T3 was added to T4 but T3 only has relieved my pains.

These might be helpful for you.

web.archive.org/web/2010103...

SCarr998 profile image
SCarr998 in reply toshaws

Thank you for the links, I will read through them. I suspect it will be the same for me and that T3 only might be the way forward. I will be reducing the T4 and increasing the T3 gradually in the coming months to see what works best for me.

greygoose profile image
greygoose

I've never had much in the way of joint pain, but my muscle pain was terrible. I was taking vit D3, B12, B complex and magnesium, but the breakthrough for me was when Iadded in some zinc. Vit D3. Magnesium and zinc all work together.

SCarr998 profile image
SCarr998 in reply togreygoose

OK, I will give that a try. Thank you.

greygoose profile image
greygoose in reply toSCarr998

You're welcome. :)

lambrusco21 profile image
lambrusco21 in reply togreygoose

will try the zinc.I am already taking magnesium and D3. I have secondary hyperparathyroidism as well.

aur2512 profile image
aur2512

I've had bad muscle pain at various times, especially back pain, and after my osteopath told me my muscles had 'disappeared' I researched thyroid myopathy.  It can be caused by too much as well as too little T3 so it's difficult to get the dose exactly right.  I also think cortisol levels are important but that's pretty difficult to gauge as well.  

greygoose profile image
greygoose

I took 5000 iu vit D3 daily; 5000 mcg B12; 400 mg magnesium and 15 mg zinc. For the B complex, it's difficult to say, they Don't give a total weight, just how much of each is in it. That varies from brand to brand, and I can't remember which brand I was taking. Just one pill, that's all I can say.

Selenium helps the thyroid... Rather a vague sentence. Selenium helps with conversion. And if you have antibodies, it helps reduce them. But, I would imagine your gland is either beyond help, or doesn't really need it. Good thing to take, anyway.     

BUT that was just me. You might not need the same doses. You should get your vit D and vit B12 (plus folate and ferritin) tested before you start supplementing, and dose according to the results.

 Then, add in the magnesium and zinc afterwards. Never start taking a bunch of suppléments at the same time, because if one should happen to disagree with you, you won't know which one it is. Always leave two weeks in between starting each one. :) 

lambrusco21 profile image
lambrusco21 in reply togreygoose

Thanks for this. 

Selenium. Is is safe to take it if one has Long qt syndrome I wonder?

This may seem like a silly question but how does one know if one's thyroid is defunct or not?

Thanks in advance.

greygoose profile image
greygoose in reply tolambrusco21

I think you need to ask that of someone more qualified - your doctor or the specialist that deals with your Long qt syndrome. Or, research it for yourself. I read somewhere that selenium can cause AF, but it didn't say at what dose. And I have no idea how that would reflect on your disease. Best not to take any risks! 

Hobnobbing profile image
Hobnobbing

I had really awful muscle pain, joint pain, fatigue and low mood when my vitamin D was too low.  I got a prescription for a high dose course of Vitamin D and it made a huge difference.  Have you been checked for other health issues?  Have you had your ESR or CRP checked?  I also happen to have Lupus and Scleroderma.  They are both relatively rare but you can have more than one illness (which makes it interesting when you are trying to decide which symptom is caused by which illness!)  Good luck.

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