Hashimoto's and pain in muscles and joints - Thyroid UK

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Hashimoto's and pain in muscles and joints

Hashiskip18 profile image
14 Replies

Hi I am new to the group.I am reaching out as I have a couple of questions.I have Hashimotos disease and on an alternating dose of 125mg to 150mg each other day of levothyroxin. I have experienced muscle aches and pains over the last 7 or so years not really sure why but I believe it's my Hashimoto's.My Endocrinologist tells me he has never herd of people suffering pain related to thyroid disease. Now I have developed pain in my joints. Has anyone else experienced this? Can anyone tell me what could be going on?I have been tested for rheumatoid arthritis. I have been told I am with in the normal range.

I was tested awhile back for AS twice both came back negative.

Any help would be appreciated!

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Hashiskip18
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14 Replies
Buddy195 profile image
Buddy195Administrator

Welcome to the forum Hashiskip18

So we can offer better advice, can you tell us more about your thyroid condition, any ongoing symptoms in addition to aches, plus blood test results (with ranges in brackets) for:

TSH

FT3

FT4

Plus any antibody and key vitamin tests (ferritin, folate, vitamins D and B12)

If your GP is unable to complete all the above (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health:

thyroiduk.org/help-and-supp...

Are you supplementing any vitamins at all?

I had awful aches when both my key vitamins & thyroid levels were not optimal. One thing I’ve learned from this forum is that when medics say normal/ within range, this may not be the same as optimal. Do ask for copies of blood results & share with us. We are here to help & support 🦋

Hashiskip18 profile image
Hashiskip18 in reply toBuddy195

Hi Buddy195Thank you for getting back to me.

It will take me possibly a week or so to sort out the information.

If I can't get the information who do you recommend do the tests privately?

J972 profile image
J972 in reply toHashiskip18

Your endo is myopic. It’s definitely a thing, I have horrible joint pains and I read about others ‘experiences all the time on this forum. And it’s been documented:

rheumatologyadvisor.com/ddi...

Hashiskip18 profile image
Hashiskip18 in reply toJ972

Thank for this

Buddy195 profile image
Buddy195Administrator in reply toHashiskip18

I posted a link above. Many members use Medichecks , Blue Horizon etc. we recommend an early morning blood draw (before 9am)

Hashiskip18 profile image
Hashiskip18 in reply toBuddy195

Thank you I ill look into sorting this out as soon as possible

CherryPie2 profile image
CherryPie2

I definitely have pains..mainly in my arms and shoulders for last 5 years. Been scanned for everything MRI, full body PET scan, seen rhumertologist. Definitely issues point to thyroid and scan recently showed thyroiditis/Hashimotos. I'm not being correctly managed and yet to see an endo (who will prob be useless like yours!).

From experience, definitely a link with pain.

HealthStarDust profile image
HealthStarDust

Joint pain is common. I’ve had mine for years that was barely explained by other causes until diagnosis.

FallingInReverse profile image
FallingInReverse

100% a hashi symptom for me! Joints in ankles, back, fingers. Lower back muscle stiffness.

All was worse when not replaced, gets better as thyroid levels do.

greygoose profile image
greygoose

Hi Hashiskip18, welcome to the forum. :)

My Endocrinologist tells me he has never herd of people suffering pain related to thyroid disease.

Of course he's never heard of it! Because he doesn't listen to his patients. Whatever you list as a possible symptom, this is the reply they usually give: I've never heard of... blah blah blah. It's just one of their little ploys to demoralise and disempower the patient. Take no notice. You know your body and you know what you feel, and nobody can deny that.

That said, it is possible that it might not be the Hashi's that is directly causing it, but indirectly. Being hypo - low FT3 - usually means you have low stomach acid, which means you will have difficulty digesting food and absorbing nutrients. And low nutrients can cause terrible symptoms! Joint pain is often due to low vit D. Muscle pain is often due to low zinc. And low B12 can cause a thousand symptoms! So, have you had your nutrients tested: vit D, vit B12, folate, zinc, copper and ferritin? If not, your next step should be to get those tested. Your GP should be able to get them done, should he be of a mind to, if not, there are private companies where you can get them done. :)

Hashiskip18 profile image
Hashiskip18 in reply togreygoose

Interesting you have mentioned the stomach. I have been suffering with some reflux for the past year. I take vitamin D , C with zinc, calcium with Zinc . I have just started taking selenium this week.I did a blood test the other week for B12 , Foliate and Ferritin . I have herd nothing back which normally means that they in the normal range.

I have suspected I have a leaky gut as I am gluten intolerant and eat a gluten free diet.

greygoose profile image
greygoose in reply toHashiskip18

If you are taking vit D, are you also taking its cofactors: magnesium and vit K2-MK7? Vit D and magnesium work together so vit D on its own won't do much for you. And taking vit D increases absorption of calcium from food, so vit K2 makes sure it goes into the bones and teeth, and doesn't build up in the arteries and soft tissues.

So, if you're taking those three things, you probably won't need to take calcium supplements, which are not a good thing to take because they are very badly absorbed, and the calcium can build up in the arteries and kidneys causing problems.

Not a good idea to supplement zinc without getting zinc and copper tested first. Because the two need to be balanced. But when you're hypo, you can have one high and therefore the other one low. It's usually the zinc that is low but best to test first to check.

I did a blood test the other week for B12 , Foliate and Ferritin . I have herd nothing back which normally means that they in the normal range.

Yes, but just being in the 'normal' range is not the same thing as optimal. The rangs are far too wide. You need the exact numbers to know where you are. So, if I were you, I'd contact the surgery and ask the receptionist for a print-out of your results - don't just wait for them to contact you because they have no idea about nutrients. And you are legally entitled to print-outs of all your blood test results, so you should always ask for one after every blood test. Being proactive is the only way to get well.

Batty1 profile image
Batty1

🤦‍♀️

jamesal0 profile image
jamesal0

100% you get joint and muscle pain if your thyroid medication isn't quit right. When I go a little low the first side effect is my spine aches. Then when I go a little high the insides on my knees hurt so when I sleep on my side I have to put a pillow between my knees. Also soles of my feet and tips of my fingers become tender.

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