"Musculoskeletal manifestations in patients wit... - Thyroid UK

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"Musculoskeletal manifestations in patients with thyroid disease". Carpal tunnel/Frozen Shoulder/ joint pain/Trigger finger/Dupretrens

38 Replies

I have had 4 out of 5 (adhesive capsulitis aka Frozen shoulder- before op when a bit Hyper, others when Hypo)

Pubmed article speaks for itself....

ncbi.nlm.nih.gov/m/pubmed/1...

If only medics took note and treated us properly - please respond if you have/had these problems, Jane :D

Thanks for the find TSH110 :D - shoulder image from Wiki Gray's anatomy

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38 Replies
Clutter profile image
Clutter

Carpal tunnel, fibro, neck/back pain & weakness, shoulders, elbow, thumb & hip joint pain. All magically disappeared when I stopped thyroid meds. Gradually returning since resuming T4 but not as severe, possibly because of the addition of T3.

in reply to Clutter

Interesting - so you didn't have these before treatment - so is Levo is the problem?

I had these symptoms before op and without meds (nil treatment) presumably from being hyper or hypo with various symptoms (I assume it must be Hashimotos or similar autoimmune malarky as TPO antibodies tested 'raised' - of course no mention or explanation of this by docs).

I would be quite happy to be an official guinea pig; I have been a voluntary guinea pig for quite some time now and am very well qualified with varying degrees of relevant experience, willing to work long hours, with good customer service skills, keen to learn and a team player. CV and references upon request. lol! J :D

Clutter profile image
Clutter in reply to

I had experienced neck problems many years prior to diagnosis & resolved with cranial osteopathy. Stress was definitely a factor.

Carpal tunnel was also a pre-diagnosis along with thumb pain which led me to request RA test which was negative.

Severity of symptoms increased on Levo and resolved when I discontinued it.

None of the other symptoms were present pre-diagnosis of Hashi & ThyCa and prescription of T4.

in reply to Clutter

Ok - I haven't needed to visit my lovely osteopath since Vit D replete. :) (£37 a session cheaper)

So neck problems pre-Levo then (very familiar) - injury/whiplash? there's a member previously posting regarding head injuries too - makes one wonder which is the trigger (apart from virus) and who invented the neck anyway? such bad vulnerable design.

I had ThyCa defcon 4 - no question, no meds, timebomb - just better out than in.

Previously 2 lots of nerve conduction tests ruled out actual carpal tunnel ('stumped' was the word-perhaps further up - er neck? not tested) still I had criteria symptoms so they were keen to operate anyway.....but I wasn't too keen, surgery is the last resort in my book.

I also tried Nutri T - seemed my symptoms got worse - stopped & back to basics - vits/minerals.... meanwhile I realised I wasn't in pain anymore so anything else becomes a bonus! J :D

Clutter profile image
Clutter in reply to

10 months prior to lump presenting & diagnosis I mashed my car sustaining minor head injury, concussion, bruised ribs & whiplash :-D

Also suffered 2 bereavements in the following 4 weeks.

Stressed out like a very stressed thing :|

I'd quit smoking 7 years earlier & have heard tell that smoking masks thyroid problems & rewards quitters with...thyroid problems (anecdotal on e-cig fora, no links to post).

in reply to Clutter

Ouch! Oh Sweetie ((hugs)) - I had a feeling there was more...<<- but don't blame you if you choose to ignore that comment as it does sound pretty darn pompous but I'm not, just an unlucky guess.... Again - the neck (but to be fair still better than 'it's all in your head'!)

And loss is no minor thing... ever.. It's so frustrating when all this stuff is so important yet ignored! (not by us fellow sufferers - I should add). I am digging my heels in a bit at the 'adrenal stuff'....on the back burner for now.....

Smoking - I started again 10 years ago due to a twat of a hubby having a mid life moment!, hence my survival choice - tranquillizers /ADs & can't remember what else pills - vs my control - I chose me.

Actually I just gave up this boxing day (my birthday) - I convinced myself I'd quit already so no probs for Super-me! & 10 years was a nice round number... I told everyone so I would feel even more stupid if I gave in! (idiot thinking). cold turkey 'tho - £25 for spray? - that's really not encouraging, but only 3 packets when it comes down to it.... I agree the reward is so harsh.... (a few posts notice the connection here too) weight gain, high cholesterol, cold, miserable, scattered unfocused thoughts..... deprived of only pleasure in life that no-one pinches?....change....

my thing is B3 (nicotinic acid).. must be connected/name?...

At the moment my body chemistry is really weird... but there's hope & I'll get there - of course if I can then others could!

and I'll say it again...'til the cows come home.... knowledge is power, this life isn't a rehearsal, start living! J :D

Clutter profile image
Clutter in reply to

Thanks for the hug, Jane.xx

I tick most of the potential causes for thyroid disease: childhood & adult head injuries, adolescent stress, bipolar drug lithium carbonate, three incidents of whiplash ( only 1 my fault), heavy smoker, family history (Graves, not Hashi & ThyCa though) yada yada. Not helpful in identifying indicators IMO.

I missed the hand, mouth, draw, inhale and exhale of smoking so much that I took up e-cigs 5 years after I quit smoking. I'm vaping butterscotch flavour but its my dirty secret & you must keep it to yourself.

I don't know what my adrenals were like but since my Nov T4 detox Ive been supplementing VitD3, folic acid, vitC, B12, B1, B2, B6, Magnesium & Zinc and I'm beginning to feel on the way to being human. I'm not nearly as exhausted & cold as I was and my feet are warm most of the time. TSH is back down & FT4 in top percentile so GP agreed to reduce T4 to 75mcg. BP vg 120/77.

I shan't be fit for Socchi but am thinking about chitting seed spuds (when I've bought some) for spring. There's always extreme housework too. That's a challenge which will have to wait a while longer.

in reply to Clutter

So many possible 'triggers'... mine could even be Chernobyl fallout! who knows, yet we are still curious as to the cause. However here we are....

and sorting vits/mins helped pain, I can function now.

I had to look up chitting! - I just leave a few old spuds in a dark place for awhile, seems the little ones do better! Stuff the housework - I still have one daughter at home who makes all the mess and doesn't pay rent! Take care J :D

Fruitandnutcase profile image
Fruitandnutcase

Yes, I had really weird unpleasant neck pains before being diagnosed with Graves and loads of joint pain ( I used to feel like I had been hit by a bus) plus my Dupytren's has worsened over the past year or so, so those findings don't surprise me at all.

in reply to Fruitandnutcase

Those darn buses... (I think mine were stealth Elephants, as I didn't see them).... sorry you have Dupretrens too - heard it's iodine related - but us roidies are wary of iodine....investigating anyway 'tho.....

Hi, yes to trigger finger, frozen shoulder. Still having problems, it's impinged now. Shoulder problems started 24 years ago.

Bankieanne profile image
Bankieanne

Have frozen shoulder and sometimes thumbs and index fingers go into spasms and freeze into a fixed position.

Currently being investigated for secondary hypothyroidism.

suki65 profile image
suki65 in reply to Bankieanne

hi i was told i had frozen shoulder,what rubbish i went on 1,000ug b12s one every day 2 months in and not much problem with my shoulder now a great book could it be b12 ?

Banjogirl profile image
Banjogirl

Oh yes. :). Trigger finger operated on, frozen shoulder lasted 2 years. Severe lower back pain since I was 30 yrs (now in 60's) and carpal tunnel in left wrist. Muscle/ligament aches. Started Levo when I was 50 and probably sub clinical for years !! The muscles etc and back much better since stopping synthetic t4 and on 3 1/2 grains NDT.

londonish profile image
londonish

I am subclinical hyper and have had tennis elbow in both arms, shoulder problem and neck problem

in reply to londonish

I avoided bilateral cubital (& carpal) tunnel surgery - I thought it a bit odd as both arms were affected, I really don't use my left arm that much so not strained or anything - and with leg pain too in my mind it had to be something else (in my case simply low vit D) J

Lilian15 profile image
Lilian15

For two years I was in and out of the doctors/hospitals for tests and treatments on practically every part of my body. I am not sure whether it was the frozen shoulders or the plantar fasciitis that was the first sign, which of course neither I nor the doctor thought about it being a thyroid problem. Anyway the doctor thought I was being treated adequately with thyroxin as my TSH was within range. Unfortunately I am also diabetic and if these things were connected to anything the doctor always said it was the diabetes causing it. Funny how none of my symptoms got better, despite the treatments yet they did once I had started on T3 (from private doctor). I wonder if they blame the diabetes because they can then put the blame on the patient for the problems they don't fix whereas they cannot blame the patient if it were a thyroid problem they were not addressing.

marmaris profile image
marmaris in reply to Lilian15

I have just had a root freeze where a needle is put into the nerve in my neck. Created pain for two years down my left arm etc. Has helped but I have noticed that T4 can cause aches. Came off T4 lately but back on 100mcgs again as tsh soared to 29 when stopped and on T3 only. Still adding T3 working up from 12.5 to 25mcgs. Wish I had an answer after 18 years of suffering.

suki65 profile image
suki65 in reply to marmaris

b12s has anyone tried ?a great book could it be b12 ?

jabot profile image
jabot in reply to Lilian15

Hi Lillian, I'm interested to see your aches and pains improved on T3. I've been on T4 only since Hypo diagnosis 3 years ago, with frozen shoulder ,tennis elbow and tendinitis in both ankles.

I have finaly managed to get an appointment to see an Endo who may recommend T3 T4 combo after she has checked my bloods... this is because I've nagged and nagged after researching why I would still feel so bad in-spite of the doctor telling me that my TSH is in range so I must be fine!

Do you know what they are are looking for before the will prescribe T3 T4 combo . I've just spoken to my GP who says my T4 is low ,T3 ok and tsh high and she will send these results to the Endo for her to decide.

Getting quite desperate to sort it out.

Lilian15 profile image
Lilian15 in reply to jabot

I have just come back from holiday. My problem was very low T4 and below range T3 but a TSH of 1.6. NHS refused to do T3. All 12 years never was T3 tested by endos or doctor despite them nagging me to stop taking it. 12 years later an endo said that he would do the test to show me I do NOT need it. Surprise surprise it showed I DID need it.

jabot profile image
jabot in reply to Lilian15

I hope they were apologetic.............AS IF !

It's all SO frustrating Is't it.. Do you take just T3 ?

Lilian15 profile image
Lilian15 in reply to jabot

Apologise - lol. After a year on T3/T4 combination from private doctor and feeling so much better, I decided to go it alone with NDT but endo and GP thought I was still on the synthetic T4/T3 combination. I was sick of arguing about that let alone NDT and of course NDT is also a T4/T3 combination anyway, plus. The endo finally prescribed T3 (too little too late in my opinion). Would only prescribe 20 mcg even though I was taking the equivalent of 40mcg. So I have now been on NDT for about 15 years and am now what I consider "normal" whatever my numbers say.

jabot profile image
jabot in reply to Lilian15

Brilliant, glad to hear that you're well. I've read an article about the benefits of T3 especially for people with Hashimotos he stated that the minimum starting dose should be 25mcg and that many Endos don't recognise that, so I'm not holding a lot of hope for my visit. No doubt I'll be back to ask how you got hold of it.

squashed_tomatoes profile image
squashed_tomatoes in reply to Lilian15

who was your private doctor? :)

Lilian15 profile image
Lilian15 in reply to squashed_tomatoes

I am not sure I am allowed to say on the forum. However he is on Thyroid UK list. At the time I found him I think Thyroid UK was being born, and there was no list then. However I had a private blood test done through TUK. The test showed my T3 was below range, so all those things I had wrong such as carpel tunnel, frozen shoulders, plantar fasciitis, ibs, and so many more, I realised was lack of T3. How to find a doctor who would prescribe it. I searched on web and found Dr. Wilson's page in the US. Now here starts what I can only think is something more than mere co-incidence.

On his page he had a list of doctors who following his protocol (T3) in other countries. The UK had one doctor listed. So I started looking up where I could find this doctor. Eventually I found him - not only did he work from a surgery in the same area where I live, it was the same surgery my husband worked at.

He was subsequently removed from Dr.Wilson's site so had I not have looked then I would never have found him. I was prepared to go anywhere I was so desperate but there he was on my doorstep.

As time went on TUK got bigger and better and had a list of private doctors and he was one of them.

After seeing him and getting myself sorted, he moved up north. It was as if he was here just for me and when I could manage myself, he was no longer here.

I then heard about the late Dr.Skinner and Dr. Peatfield but by then I was already on my way to losing all those symptoms and getting well again.

I am away next week so will not be on computer but he is on TUK list and his initial is Dr.D

squashed_tomatoes profile image
squashed_tomatoes in reply to Lilian15

THANK YOU! yes I used to be under Dr Skinner so have been looking at the TUK list to see who would take his place since he died. Much appreciated for the reply and I am glad your are getting better if just a little :)

frascina profile image
frascina

Hi I have all of these symptoms carpal tunnel, shoulder discomfort, numb arms in bed at night, and inflammed tendons. I wear a hand splint at night and that gives me some relief.

Why is it a problem?

I was diagnosed with Parkinsons in 2010, because of a hand tremor and frozen shoulder. I have now been told I am hyperthyroid. I am in more pain with shoulder, arm, wrist and thumb joint. I am now feeling utterly confused as to what is causing what.

I shall be happier next week when I have my first appointment with the endocrinologist, maybe he will be able to give me some answers.

Confused

MaryMary profile image
MaryMary

Hi yes!

Lower back pain/pelvis comes out of alignment, tear ligaments easily in back and knees, plantar fascitis, carpal tunnel. All stoppd on t3 only (except for pelvis issues) vit B12 and Vit D. Not sure which has helped most. Recently sent to a muscular-skeletal big wig for back and he suggested that the medical profession are now finding clusters of conditions which appear together, but he was a bit vague. This is positive though and let's hope the research continues...

Mary

Thanks for the replies - it wasn't just me then.

I don't know why these conditions occur- I was just low VitD.

Carpal tunnel is common and linked to myxoedema swelling in HypoT sufferers. (Dr Lowe explains this too).

However Frozen shoulder more common with HypErs.

My view is that if it IS a deficiency - may as well sort it as anything to reduce pain is well worth it. Jane :D

Lilian15 profile image
Lilian15 in reply to

I was definitely hypo (bottom of range T4 and below range T3) no antibodies so not hashi and had both shoulders frozen. I was weeks at physio without any improvement and in the end had to have them both manipulated under anesthetic. Still not good afterwards and needed more physio, although there was some improvement. When I started on T3 it began to improve until my shoulders were completely normal again.

escalade profile image
escalade

express.co.uk/life-style/he...

ncbi.nlm.nih.gov/pubmed/128...

in reply to escalade

Thank you escalade, I did research the injection a while back when it was only available in France I believe, but my Dupuytren's hasn't got any worse lately, and I'm in good company - Bill Nighy! :D

AL14 profile image
AL14

I was diagnosed with Graves in January 2014 and at the same time suffered with a painful right shoulder and upper arm going dead especially at night. Sleeping was almost impossible. My GP referred me to a physio and did not think there was any link to my Thyroid condition. I am now getting the pain and numbness in both arms and desperate for a solution as I cannot sleep on either side - pain and numbness during day is more bearable !

Chrystalheart profile image
Chrystalheart

Yeah. Oh yeah. Lots. First swelling and pain in knees, diagnosed with fibro. Then pain kept spreading. I developed exercise intolerance. My right thigh muscles sometimes just stops working entirely when overtaxed. Weakness and pain in my upper arms and shoulders, down the right side of my face and neck. Scalp muscle spasms. Toes that disjoint when tired. Knees and ankles that sometiems give out. Tremors (whole body and location specific). Lots of pain and swelling in the muscles around my eyes which are also causing diplopia (double vision). Then started having trouble breathing when over extended. The muscles at the bottom of my right lung and just to the right of my sternum would hurt for days after an episode.

Really, it has kind of sucked to be me for almost 30 years. :-|

Now that I have been diagnosed with hashimotos I've been doing my own research. I'm thinking I've had cellular level hypothyroidism in tissues for a long time. There are genetic reasons why you can be hypothyroid at the cell level even if your thyroid panel comes back borderline or in the normal range. I think that's why it took them so long to figure this out. It was finally a thyroid ultrasound that proved hashimotos.

I have a very strong maternal family history of thyroid disease. Poor genes in that area make sense. I'm looking further into it. Knowledge is power.

by the way, I did have b12 shots. It didn't help. But i think it's because the cause is genetic, not b12 deficiency.

Jen

linlow profile image
linlow

bilateral carpal tunnel, unilateral cubital tunnel, trigger finger, trigger thumb and joint pain (from my ankles to my neck, tell me a joint that doesn't hurt! - though it isn't as bad as when I was riddled with arthritis) plus a diagnosis of cfs.

With my next visit to the endo coming up on Wednesday, I am so glad I just spotted this post (thank you for putting it up) - perhaps it gives more ammunition to fight my 'within range' results.  To be fair both the doctor I see and the specialist he sent me to are listening and, so far, have agreed to treatment but for the last 6+ months I have been on a minimum dose of T3 and feel like I am back to square 1.  Still, there's always hope and, maybe, a little more of it now :)

helvella profile image
helvellaAdministratorThyroid UK

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