Gluteal tendonopathy : Anyone else experienced... - Thyroid UK

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Gluteal tendonopathy

crmavb profile image

Anyone else experienced long term hip/glute/ low back pain been diagnosed with this. I’m suspecting the thyroid is a factor. Really want to stop experiencing chronic pain. I have Hashimotos and am on levothyroxine and T3

45 Replies

Hi crmavb. I get lower back and tips of some of the long bones, like top of my hip but not the hip joint it's self. End of my ribs at the sternum, wrist end of ulna. Tendons where they attach to the bone .

For me it's todo with how much NDT (Natural Dedicated Thyroid) I take. The more I take the more random pains I get. I think the active T3 is what causes it - the body is just complaining it has had slightly too much for a few hours before it dumps it into RT3 (reverse T3). But I don't really know , it's just a guess. But altering dosage certainly alters pain levels .

James

Hi there James - you are quite right it is to do with the medication i.e. your adrenals are unhappy as they need to take up the slack to supply the energy needed. It is a delicate balance - believe me I know...........

humanbean profile image
humanbean in reply to jamesal0

I think the active T3 is what causes it - the body is just complaining it has has slightly too much for a few hours before it dumps it into RT3 (reverse T3).

It isn't T3 that gets dumped into reverse T3. It's excess T4.

Hey, well I haven’t been officially gluteal tendonopathy but I do have hip, groin,& lower back pain! I have Hashimotos & on Levo too!I never thought to correlate it!

I'm so sorry crmavb your going through these pains. Personally I experienced the hip pains to the point that I had a hard time climbing the stairs. I was on T3 and wsitch to NDT and still had the pains. I'm off all T3 and I'm on T4 sole and the pains thankfully are gone. Wishing you fast resolutions.

crmavb profile image
crmavb in reply to jgelliss

Wow! Did you get guidance to come off T3 ? If it was just that simple I would love to try that option.

jgelliss profile image
jgelliss in reply to crmavb

I simply was not well on T3 nor NDT . I tried it for a few years . There is no point dosing with T3 in this case when I was having symptoms e.g. muscle/joint pain. T3 is a short acting thyroid hormone. Best wishes .

Yes ! Me ! I don’t have HASHIS though , I have HYPERthyroid Graves’ disease .

For many years now , I’ve had severe pains, sporadically, in what I thought were my joints , and also my Glutes , but , after Scans and XRays have been told it’s Tendonosis.

I started to take Regular L Carnitine and it helped me enormously.

Google it by typing

L Carnitine for Tendons

And see how it helps .

M🌹

Zephyrbear profile image
Zephyrbear in reply to madge1979

A warning however from:

webmd.com/vitamins/ai/ingre...

Underactive thyroid (hypothyroidism): Taking L-carnitine might make symptoms of hypothyroidism worse.

madge1979 profile image
madge1979 in reply to Zephyrbear

Well , not for all HYPOS then , but it certainly helped me very much indeed and the effect was almost immediate . I guess Carnitine was one of the many things my body was lacking in because of my very HYPER State , which left my stores of many things depleted . M🌹

madge1979 profile image
madge1979 in reply to Zephyrbear

I’ve read this article many times . As you can see there are loads of benefits of taking L Carnitine , L Carnitine or Acetyl L Carnitine .

While it continues to work for me I’m happy to continue to take it , as it has had a huge impact on my life, pain wise .

I think Many people with Thyroid Diseases suffer greatly with Muscle, ligament and Tendon pain and are convinced that it is Arthritis.

Taking This and the benefit of in-depth Scans proved my problems were NOT Arthritis , but Tendon trouble .

In fact , my 12 year long Hip Bursitis disappeared within days after taking it .

.... and taking it proved it to me .

M🌹

Hi there - adrenals grab vitamin C out of the body - tendons need Vitamin C which might be depleted hence the tendons create.

I take High dose Vitamin C daily as well as many other vitamins, minerals and Nutrients in an attempt to “build up “ my depleted Immune System , caused because of the ravages on my body because of Graves Disease .M🌹

Reason some people will not do well with L-Carnitine is that it affects the kidneys - so depends how strong your kidney function and clearance is.

My regular blood tests mean I can keep an eye on my liver and kidney function , it’s always great to know that they’re so far doing well , despite Thyroid disease.M🌹

Zephyrbear profile image
Zephyrbear in reply to madge1979

That's absolutely fine if you suffer from HYPER thyroidism, but it is definitely not recommended for those of us suffering from HYPOthyroidism as it could actually make it worse.

madge1979 profile image
madge1979 in reply to Zephyrbear

That’s why I recommended Googling it researching it first , and not just taking it !

🌹

I’ve had long term hip/lower back pain but I don’t believe it’s related to my thyroid. Mine is a slightly odd presentation of arthritis and I didn’t go to the doctor for years because the pain would change and I didn’t know how to describe it. It seems to run in my family and the others don’t have thyroid problems.

I’d not heard of gluteal tendonopathy before - just had to google it. Could it be caused by bio mechanical issues? Insoles make a huge difference for me.

After many years I am now awaiting a hip replacement.

I had global pain for years and years! It’s because of the Hashimotos - our auto immune system attacks tissues - esp tendons where they attach to joints - causing inflammation, stiffness and pain.

I was given Celebrex and my life has changed beyond recognition. Don’t let them give you pregabalin or gabipentin - those drugs are vile. They are cheap so sometimes GPs offer them first - if that happens just tell them you’ve tried them but they make you sick! Then they should try you with Celebrex.

Finally, i find sports message really helpful too.

Hi there - I tend to disagree - it's not the Hashi's that attacks the joints etc. but the adrenal glands that can't cope and then that causes inflammation. In my opinion - I believe all thyroid patients should be on either steroids or DHEA for a short period to help them.

SlowDragon profile image
SlowDragonAdministrator

Post from 2 years ago showed really dire ferritin levels

healthunlocked.com/thyroidu...

When were vitamin D, folate, ferritin and B12 last tested

Are you on absolutely strictly gluten free diet

gabkad profile image
gabkad in reply to SlowDragon

And high C reactive protein.

crmavb profile image
crmavb in reply to SlowDragon

Thank you, my ferritin levels have always sat on the low end. I've just ordered a bottle of floradix. And I will get another blood test ordered soon. As I don't think I have had a recent one done.

Yes! Had crazy sore pains under bum and in about sixteen different points around my hips including sides and top of hip bone. All totally gone now I’ve got my T3 over 6. Blinking specialists and physios all told me it was caused by something different (trapped nerves etc) and told me to do exercises which I couldn’t do. Completely maddening to be told to just stretch out your hip when you’re saying ‘if I could, I would!!’ Really, T3 was the cure for me.

Pain at the top of my thighs at the back, spreading into glutes when walking was what took me to the GP. Also stiff gait and slow walking. Eventually diagnosed Hashis. Titrated Levo up to 100. All bloods looked optimal. Pain remained. Went to private Endo. He said not thyroid related. I requested a trial of T3 in addition to Levo, and have been on it for 4 weeks. Pain and stiffness gone. Fingers crossed this lasts. Definitely thyroid related!!

Having had lower back issues for around 60 years I have spent a fortune on chiropractors, osteopaths and massages. I had spinal surgery in 2007 for stenosis which they thought would last 10 years ...

I started teaching yoga twice a week whilst living in Crete for 15 years from 2004 and swam loads - a kilometer a day for six months of the year.

Since returning to the UK I have not been able to find an appropriate yoga class. Have found a great osteopath and Bowen therapist - both have helped.

Last on my list was Pilates ! Have found an ex Army PTI who has her own back issues and has been teaching Pilates for 25 years. Am having one2one - learning and re-learning so much. Yikes it is demanding of my poor old body. Stronger movement within narrower margins compared to yoga.

From my reading I have known that we have more muscles than bones and now I am having to make them work more efficiently. Being flexible made most yoga poses seem possible - putting stresses elsewhere - Pilates is more challenging for me but after 3 lessons plus homework I can feel a difference. Am also swimming twice a week.

Back issues :- spondylolithesis - stenosis - trochanter bursitis - numb lower legs and feet - inability to stand or walk for more than 15 minutes. My aim is to be able to walk more this coming winter and enjoy the countryside here in Devon. At almost 75 my expectations are not massive !!

I agree with others that thyroid hormones play their part when it comes to muscle aches and pains. Muscles that support the skeleton seem weaker. So strengthening the scaffolding makes sense !

Apologies for the long post and hope you find answers soon. Optimal B12 and VitD can be helpful with inflammation and pain .... 🌻

catrich profile image
catrich in reply to Marz

I was thinking of yoga and pilates as I read this thread. Then I read your post Marz. I very much agree. I use Do Yoga With Me - Canadian site. It's fabulous and I recommend it to everyone who can't find or who doesn't have a suitable class nearby. When my T3 levels are too low I have dreadful joint pain. But when I don't do yoga - at least 4 times a week ( at the moment daily) - I hurt all over. Particularly my hips, lower back and knees. It isn't all down to our thyroid or hashimotos.

Marz profile image
Marz in reply to catrich

Will take a look at the site - thank you ! Glad you have found something that helps you 🧘‍♀️🙏🧘‍♀️

Hi there,

Yes I have - it is an adrenal issue.

Here is a document that I absolutely guard with my life as it is no longer on the internet - but is so accurate and was written by an osteopath/chiropractor - these two skills were so important in my health challenges and diagnosed me well before any other medical people.

You can see the muscles that are connected to the adrenals and how 'happy' they are can help you judge what is going on.

I actually used to use these pains signals/muscle weakness as a guide to how I was doing as I am on steroids for adrenal insufficiency and I would know whether I needed more or not.

Unfortunately this document is no longer on the internet - I daresay the person concerned has retired etc. - but I have a copy 36 pages long and guard it with my life. I cannot send a link but can only send it via a e mail so I will send you an e mail with it as an attachment.

Bear in mind that using thyroid hormone puts pressure on the adrenal glands as you are asking them to rev up to support the extra metabolism and sometimes they can't do it.

Hope this helps - look out for the document - sending now.

A

ZoBo profile image
ZoBo in reply to posthinking01

Hi, this sounds interest I g, could you please send to me?

posthinking01 profile image
posthinking01 in reply to ZoBo

Hi there - it is a word document and only way I can send it is if you send me your full e mail address. I am unable to do it any other way according to my IT hubby.

Annib1 profile image
Annib1 in reply to posthinking01

Me too please. How do we give you our email address?

posthinking01 profile image
posthinking01 in reply to Annib1

Hi no problem - sorry I can't put on the site - its 36 pages long too big to cut and paste in here. I think you press on my name and it provides my e mail address.

posthinking01 profile image
posthinking01 in reply to Annib1

Hi Annib1 - I haven't received your e mail address yet.

helvella profile image
helvellaAdministrator in reply to posthinking01

You could post it to any of the various file sharing sites around!

For example, iCloud or Google (if you have an account).

Or sign up with archive.org/ and put it there. Which would make it available - potentially forever.

(Assuming no copyright issues.)

Please please send me a copy. I've been struggling with severe back, glutes and hip pain for months. I'm on T3 only and steroids for adrenals. I really don't know where to look for answers , whether to reduce or raise steroids or the same with T3. Thank you

So sorry to hear that - please click on my name and send me e mail showing your e mail address and I will send to you.

Wishing you well

Thank you. I have hopefully sent you my email. Thank you so much.

On its way !

crmavb profile image
crmavb in reply to posthinking01

Thank you , I'm going to have to try reading it tomorrow, as I'm not finding it an easy read. But knowing you have found it so helpful, I want to try harder.

posthinking01 profile image
posthinking01 in reply to crmavb

Hi there ask anything you like - I have been reading documents like that for over 55 years so it's easier for me - but a bit of a minefield as it would be for me if I hadn't.

I would like a copy of this document as well since I have been experiencing similar pains for over 2 years. I will email you my email address. Thank you so much for sharing this!

Thank you so much everyone. Lots of things to try from all your posts. Excellent help from you all.

I've added vitamin D and I've gone without my 10mcg of T3. Will obviously review this decision frequently. I never did split dose, as I would likely forget the second half. I've sometimes only taken 5 mcg. But I've never gone without in 3 years. Won't hurt to test this theory. I've got a relaxed day ahead of me. Only teaching one gentle yoga class. The pilates and yoga comments were interesting too. I remembered a pelvic balancing routine that is very good for pelvic pain. And I would benefit from doing pilates more often. Thank you for the pain relief recommendation. If I require medication to get through the day or to sleep, I prefer CBD oil as first choice. But wouldn't want to rely on it too often as it is pricy.

I’ve found something that is making a difference…. The plant paradox diet which is eating foods that are free of lectins.

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