Neck crunches and cracks: Has anyone experienced... - Thyroid UK

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Neck crunches and cracks

ElsaElsa55
ElsaElsa55
83 Replies

Has anyone experienced neck crunches and cracks when moving neck up/down and when looking left or right. It is very unpleasant and is getting worse, it doesn't actually hurt when moving neck but some days I do get a dull ache at the base of my skull. Just wondered if anyone has had this and if there is anything I can do to alleviate the symptoms. Thanks

83 Replies
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Annoynomice

Try getting your vitamins tested. Vitamin D deficiency can cause aches and pains. It could also be your pillow or a physio might help diagnose

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Mouldyoledoll

Yes but I’m not sure it’s thyroid related

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TSH110

I’d beg to differ!

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Baobabs

If you are menopausal of post try to have a Dexa Scan for Osteoporosis. I frequently read that OP has no symptoms until you break a bone but this simply is not true. The more I read, the more I realise that weakness, bone pain and cracking sounds in my back and rib area were signs of the disease.

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Deniseelk

Yes, I do but not all the time. I have Rheumatoid Arthritis and spoke to my Rheumatologist about it. He basically said if it doesn’t hurt and doesn’t make your arms / legs go “ dead” then quite normal and not to worry.

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Fruitandnutcase

In my physiotherapist run Pilates group most - well all of us have creaking and grinding and in my case a sort of grizzly noise when I turn my head to either side. We’ve been told It’s nothing to worry about- bear in mind our teacher knows us and our bodies very well though. So unless it hurts to move your head / neck I’d agree Deniseelk’s rheumatologist.

Headache at base of skull could be occipital headaches. I had that years ago and thought the locum Doctor I saw was nuts when he prescribed some sort of cream to rub in - a bit like a prescription only version of ibuprofen gel. Big surprise for me was that it worked!

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Mouldyoledoll

My arms do go numb, I also get the grinding in the bottom of my spine in my Sacroiliac joints

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thyr01d

Yes, had it for years, I think it is normal and don't worry about it, hope that's comforting.

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TSH110
TSH110
in reply to thyr01d

I’m not so sure about that!

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Baobabs
Baobabs
in reply to TSH110

I agree! If I had investigated my creaking bones earlier I may not have developed severe OP.

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TSH110
TSH110
in reply to Baobabs

I try and think of my skeleton as being living and able to regenerate and change according to stimuli and hope it will manage to function ok. It has been grim sometimes tho the pain can be awful. I started getting spontaneous breaks of my ribs which was soul destroying. The only thing I had ever broken previously was my ribs in a cycling accident and I went down with one hell of a wallop! I think I had been left untreated for so long that this caused the bones to become weak and demineralised (and maybe there was some inherent weakness with the earlier bike accident). It got worse on Levothyroxine. I think three went on different occasions. I eventually found thyroid UK learned a bit and swapped to NDT. I felt so much better on it and when I was sent for a dexa scan later on they said my bone density was in the top 1% of the population. I can only think that the bone thinning process reversed. I have had no breaks since but have had costochondritis - not recommended! I also get strange bouts of back ache which could be the AS starting up again it happens in the night and reaches its zenith on waking but soon goes away once I get going. I consider myself very lucky in that mine seems to come and go and is pretty low grade. Are you able to improve your situation with the OP? It can be very debilitating.

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Baobabs
Baobabs
in reply to TSH110

Where you diagnosed with OP? I was diagnosed 2 years ago after my Hashi's diagnosis. I was determined not to have OP meds, did all I could to find the best way forward to treat myself. I refused to lower thyroid meds as I have a suppressed TSH because I knew I wouldn't have the necessary energy for exercise. Armed with a nutrient dense diet free of refined sugar/gluten, regular weight bearing exercise and a cocktail of supplements, off I went. I'm due another Dexa Scan but the last one I had a few months back showed the disease was beginning to reverse. It has been a long and strict protocol to achieve the current result and I still have a long way to go. A recent read, 'Rebuild Your Bones' by Mira and Jayson Calton has supported my action and I'm hoping to completely reverse my OP eventually. The authors of this book claim OP is caused by micro nutrient deficiency over a lengthy period of time. They don't even mention the menopause.

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TSH110
TSH110
in reply to Baobabs

I think I only have osteoarthritis rather than osteoporosis but I had better check what the difference is or if they overlap. I think those are sensible steps you are taking. I am gluten free. I gave up sugar in coffee but still crave sweet things like chocolate which I ought to cut out. They say fruit and nut causes less sugar spikes in the blood but it is probably just the lesser of many evils! I think I may have problems with magnesium. I get bouts of terrible cramp. I am eating lots of almonds which are a good source if it. and cavallo Nero, which I prefer to other kales, again rich in mg. The cramps seem to have stopped 😊. I get the impression from discussions on here that magnesium deficiency can cause calcium to be pulled out of the bones and then it goes where you don’t want it like in the blood vessels - I may have got that wrong but if it’s correct then getting good levels of magnesium is important for bone strength. I found vit D3 exacerbated the cramps some say it needs Vit K2 as well to work properly. I just stopped taking it - it was a relief! I hope the next Dexa scan shows further improvements . It is well worth trying to do what you can to combat it,

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LyraBelasqua
LyraBelasqua
in reply to TSH110

Hi TSH110 - as I understand it, taking D3 probably exacerbated the cramps because you were using up more magnesium. D3 and magnesium need each other to work properly.

I think K2 doesn't increase the effectiveness of D3 per se, but it is supposed to direct calcium to the right places - hard tissue (bones and teeth) rather than soft (arteries or kidneys). This is important because vitamin D increases the amount of calcium you can absorb from food.

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TSH110
TSH110
in reply to LyraBelasqua

Thanks for that helpful info I must try to take note better about vitamins and minerals! Each clarification is slowly reaching the grey matter!

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Mamapea1
Mamapea1
in reply to TSH110

Chocolate has good levels of magnesium😊 I have long tried to avoid all refined sugars as much as possible, and use honey and fruit to quell my cravings, but chocolate is so good!😋 the last time I tried to cut out all sugars I passed out, (adrenals?) so I go easier on myself regarding this, and aim for a happy medium.

As I understand the Vit D/Mg/K2, the Mg helps the Vit D to work, and the K2 directs the extra calcium the Vit D has created/enabled you to absorb, into bones and teeth where it's needed, and away from soft tissues. I personally found that once I had sorted the Mg levels and had begun taking K2, I was able to raise my Vit D with no problems. It doesn't seem to help thyroid sufferers to try and increase Vit D without the cofactors...it didn't work for me anyway.

I still take the D in the form of a Better You mouth spray, as I had problems with absorption, and it worked really well. I don't think it's possible now for me to get enough Mg from food alone, and I can really notice the difference when I haven't taken it.

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TSH110
TSH110
in reply to Mamapea1

I keep meaning to buy some magnesium I tried the malate form as I didn’t want bad guts and that one is a natural form found in fruit but it is hard to find I need to visit a proper health food shop to get some. I think some recommend biglycate form. I had bad vit D deficiency on Levothyroxine I was never tested to see if the d3 tablets had helped. I did feel better for them but also swapped to NDT around then, when real improvements occurred very rapidly. I presume the vit D deficiency resolved but I don’t actually know for sure. I have a wretched Thriva blood test but can’t get any out with those spigots not a single drop following every instruction to the letter I am surprised my fingers are alive with virtually no blood supply to tap into 😂🤣😂 I must arrange a venous draw but they take the money before you can book and I want to know what slot I can have before coughing up £50 just in case they charge even more for weekends or early morning slots. You’d think I’d know a nurse who could pull it out for a few quid but I have drawn a blank. Some say try the surgery but I hardly ever go there! I had better try and sort it out as I wanted to know if everything is ok. Otherwise it is all guess work especially with the NHS reluctant or refusing to do comprehensive tests including free t 3, iron and vit d. My last tests missed all those out of course the thyroid panel (TSH and T4 🙄if you could call it a panel a 1/10 of a thyroid panel! !) are useless for me on NDT. Doc did her nut at theTSH but I did explain she was young and admitted I seemed to know more about it than she did. She thought I was hyperthyroid but I told her I had suffered bouts of it before treatment and I definitely did not feel like that in fact I felt quite normal! I explained why the TSH was suppressed because I was fully replaced with thyroid hormones so there was no need to send signals to a defunct thyroid to make more hormones. I hope it inspired her to find out more. She was extremely thorough and I was impressed she didn’t miss a thing where the blood tests were concerned although the report actually said it was all ok and no action was needed. She was on that TSH like a rottwieller!

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Mamapea1
Mamapea1
in reply to TSH110

Yes the glycinate and malate are good...I had lifelong constipation so the Mg citrate was a blessing to me😊 although it's not essential for that since I started on T3, as I now have peristalsis🎉

That's very annoying not being able to draw sufficient blood, but it would be good to have those results, especially as you're not supplementing D at present ~ it would give you a baseline. It's ridiculous what the NHS won't test for...all the really important things that are so crucial to our good health...and could be fixed...makes you wonder. I'm glad you managed to persuade the Dr about the TSH ~ they really are obsessed with it aren't they?

I definitely think you should start on the Mg...I had no idea how deficient I was until I started on it. I bought the book The Magnesium Miracle by Dr Carolyn Dean, available very cheaply second hand, and found it very interesting.

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TSH110
TSH110
in reply to Mamapea1

Thanks that is very helpful 😉

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endomad

Mine was deff thyroid related as it went once on T3. I remember in bed I moved my head and the crack was so loud I thought I had somehow broken my neck!! My neck always felt stiff. My ankles/achillies were also rock hard. These are 2 symptoms that flag I need extra T3 for few days.

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TSH110
TSH110
in reply to endomad

Yes mine went with NDT and I had terrible Achilles tendinitis which got so bad I had to have an op on one of them. It helped but I bet if I’d have got thyroid replacement therapy much earlier on it would have sorted it out like it did the cracking neck and shins. People at work said they knew if was me, from behind their screen dividers, because they could hear all the cracking noises as I walked along the pathway! I kid you not. I just thought it was normal for me and never thought much more about it let alone mentioned it to a doctor.

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MULLIONAIRE

I find yoga neck exercises help. Plus more recently been using massage balls.

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TSH110
TSH110
in reply to MULLIONAIRE

I must look those up.

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BB001

I do. have you got forward head syndrome? Aka text neck?

You might find that doing physio and pilates exercises (such as Cobra, Swan etc) to improve your posture will help. The aim is strengthen the back and shoulder muscles to compensate for the fact that most of our activity nowadays is looking down or bending over. Bending over a desk, a mobile phone, a computer, the cooker etc.

Research 'neck forward syndrome'. Google images gives good pictures. Youtube has videos of exercises to help.

Look up basic pilates exercises, but avoid any that involve lying on your back and lifting your head.

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TSH110
TSH110
in reply to BB001

I’m an inveterate stooper - just like my dad. I think it’s known as spondy gait

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Baobabs
Baobabs
in reply to TSH110

Please could you speak in English?

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BB001
BB001
in reply to Baobabs

Could you clarify please, as all the posts are in English when I read them

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TSH110
TSH110
in reply to Baobabs

That is English!

Inveterate = English for deeply ingrained habit/habitual offender

Stooper- English for some one who stoops ie has a bent back with head well forward and looking down

Spondy gait = English vernacular expression for a stoop or walking in a stooped manner - I presume spondy is derived from ankylosing spondylitis a medical condition that is a cause of stooping due to the resulting increasing inflexibility of the spine as the vertebrae fuse together and gait which means step or the way you walk

See: ncbi.nlm.nih.gov/m/pubmed/2...

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TSH110
TSH110
in reply to BB001

Will do I think it is my abdominals that need waking up! I think my back and legs must be very bossy always trying to control everything instead of sticking to their area of expertise 😊

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posthinking01

Hi there - yes I get this a lot - and in my case it meant my neck was out of alignment - there were times when I could see it askew when looking in the mirror - but then I am hypermobile - my joints are loose due to thyroid/connective tissue issue.

I find an osteopath helps who would gently massage the neck and get the muscles that are pulling it out of alignment more relaxed - please do not let anyone 'crunch' your neck as it is dangerous. Physio would not be applicable in my opinion.

The other thing is to get the muscles more relaxed - are you short of magnesium - this will release the muscles and stop them being so tense. Your pillow might need lowering - and when mine starts doing that again - I do an exercise - very very gently and slowly - look to the left - look to the right and then gently downwards to stretch the muscles that are taut - do not look upwards. These are tips I have gleaned from experts with my joint issues. Try to do this exercise each time you have had your neck in a downward position or upward even - to release the muscle tension.

If you do take D please be careful as this can cause more calcium to be dragged into the joints - and could make it worse - if I told you that I took some D a few weeks back for my carpel tunnel problem - which is thyroid and low B6 - the B6 was fine but the D made my wrist worse so that I couldn't even hold a cup of tea - I was totally disabled until I realised what it was - then I worked out the D was making me further short of magnesium that I was obviously low on again - I didn't realise until a few years back and should have known that D depletes Magnesium. So be careful as it could make your neck worse. Hope I haven't confused you just ask if any questions.

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TSH110

Totally agree!

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Mamapea1

That's interesting...I also have hyper mobility, and I do take a fair bit of magnesium, but I guess I could always try a bit more, as I definitely had a quite severe deficiency a few years ago before I found this forum...in everything! Thank you.

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posthinking01

Hi there its awful isn't it - how much mag do you take at the moment - also Vitamin C is really important as it helps with collagen but also with the adrenal glands and they are also responsible for some of the skeletal muscles - I have a weakness in the pelvis and knee area and when they start to 'collapse' I know my adrenals are low and grabbing the C to keep the cortisol up.

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Mamapea1

Sorry ~ meant to add that I take 750mg of Mg citrate in the daytime and 200mg of Mg glycinate before bed most days. I was taking more, but seem ok on this atm. I have been on a high dose of T3 only for quite a while and am now very much improved.

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posthinking01

That's good to hear - brilliant

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posthinking01

I have a document on adrenals and this is an excerpt from it .............these are the problems I experienced very seriously when I first got ill and from time to time comes back when my adrenals are running low - as I am on lifelong steroids - if I do too much or have stress or become ill - a cold or whatever - then I need to take more steroid - sometimes I get this wrong and my body tells me by these symptoms below my cortisol levels are running low.

Adrenal Gland–Related Muscles

There are five specific skeletal muscles which are related to adrenal gland function.

These are 1) sartorius, 2) gracilis, 3) posterior tibialis, 4) gastrocnemius, and 5) soleus.

There will be weakness in one or more of these muscles when the adrenal glands are malfunctioning. Because of the attachments of the sartorius and gracilis on the pelvis, (sartorius—anterior superior iliac spine; gracilis—pubic ramus), their weakness in persons with adrenal stress problems may allow the sacroiliac joint to subluxate posteriorly.

The sartorius and gracilis stabilize the innominate (one side of the pelvis), holding it in an anterior direction. Many persons with hypoadrenia seek chiropractic help for the care of sacroiliac pain and/or low back pain which is due to the lack of pelvic stabilization normally provided by these muscles.

The sartorius and gracilis have a common insertion (along with the semitendinosis) on the medial side of the knee and rotate the tibia medially on the femur. When weakness of these muscles occurs, there is a loss of stability on the medial side of the knee. The sartorius and gracilis (along with the semitendinosis) act as dynamic ligaments, protecting and supporting the medial knee joint during various ranges of motion. Their function is particularly important in situations where the knee ligaments alone offer inadequate support.

It is very important to check for hypoadrenia in any person with knee problems. One can see how one hypoadrenic person will present with knee problems and another with back problems, and some persons will have both.

Due to the relationship of the posterior tibialis, gastrocnemius, and soleus to the stability of the foot and ankle, many hypoadrenic persons will complain of symptoms of tired feet, weak ankles, or aching calves.

The posterior tibialis holds up the medial longitudinal arch of the foot, especially during gait. In some persons exhibiting hypoadrenia-related weakness of the posterior tibialis, the medial arch will drop, causing a pronation problem and strain to the foot and ankle. The one common factor in persons with the above-mentioned musculoskeletal complaints will be the weakness of one or more of the five adrenal gland related muscles accompanied by improvement of their symptoms following treatment of the adrenal glands.

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Mamapea1

Thank you for your reply. This all resonates with me too! I had very low cortisol following a prolonged period of both physical and emotional stress. I haven't tested the levels recently, but feel very much improved...of course it's all a continuous balancing act😕 I usually take 3000/4000mg of Vit C most days in the form of Nutri ultra potent Vit C and Biocare mixed Ascorbates...plus assorted other 'remedys' if I get a cold, etc. and I believe it helps on a number of fronts. There are so many things to rectify and rebalance after years of misdiagnosis and inappropriate meds, but I do feel I'm getting there👍

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TSH110

Very interesting

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BB001
BB001
in reply to posthinking01

Please can you give the source and name of this document as it sounds very interesting. Thank you

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posthinking01
posthinking01
in reply to BB001

Here is one of them - medicalnewstoday.com/articl...

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BB001
BB001
in reply to posthinking01

Thank you

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BB001
BB001
in reply to posthinking01

Vitamin D needs to be taken with magnesium and K2

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posthinking01
posthinking01
in reply to BB001

agreed

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posthinking01
posthinking01
in reply to BB001

Hi there whilst I agree - it must be remembered that the K vitamins are a clotting vitamin and therefore as someone who has had Hughes Syndrome - sticky blood - there is no way I would take anything containing it and people on warfarin should check with their medical team first.

Vitamin K activates proteins that play a role in blood clotting, calcium metabolism and heart health. One of its most important functions is to regulate calcium deposition. In other words, it promotes the calcification of bones and prevents the calcification of blood vessels and kidneys ( 3 , 4 ).

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TSH110

Would any of this explain why I cannot get a spigot blood test out of my fingers? What blood appears coagulates immediately and would not even cover the bottom of the sample tube let alone fill it.

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posthinking01

I don't know - do you take K2 in some form or another - many years ago when I first got ill - about 1993 - I cut my finger and the blood coming out when I touched it was acting like chewing gum - I was absolutely horrified - so be careful as sticky blood can make you feel really rotten - if blood isn't flowing properly it can cause many issues. Might be an idea to see your GP and ask him for a coagulation blood test - BUT - the blood can show the symptoms you are experiencing with the prick test as being a sign of de-hydration. I would get a test done and certainly stop taking any calcium/K vitamin products just to be on the safe side.

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TSH110

Not taking any vits or minerals emmenthal cheese is my go to supply of K2 but I don’t eat mountains if it (oh my an emmenthal cheese mountain that would be fun to conquer!). Don’t think it was deyhyration as I drank lots of water the night before and on the day. My shins got very itchy and I scratched so hard one started to bleed so I though - hell nows’s my chance! I did fill up the phial but even that was coagulating fast. I did the rest of the instructions and sent it off but got a message saying that there was a problem with the sample and it could not be processed. They did send me a new test gratis which was good of them. I can’t see it would matter where on the body the blood came from. I think a venous sample is my only hope! I have developed systolic blood pressure after always having very low values. Presume I have the start of CVD of a hereditary type not sure if that interferes with blood thickness and clotting factors. You gotta die of sommat I suppose. I’m on bonus time anyway. 😉

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posthinking01

Sorry forgot to add as I have had this problem for many years - alleviated as I have said by treatment when necessary - if the neck is out of alignment it can affect the jaw (the bite) and sinuses etc. - the neck alignment is very very important.

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TSH110

I had this really badly. I was diagnosed with ankylosing spondilitis and had a lot of boney spurs in my cervical and thoracic vertebrae which also caused trapped nerves in my arms and legs (one limb at a time but still not very nice). That was in my 20’s my doctor advised as much excercise as possible and to see an osteopath. The osteopathy was very helpful (the course was costly though but well worth it) and I had complete relief from symptoms for many years. Later on in my late 30’s 40’s a lot of my tendons used to make cracking noises on movement and I had all sorts of strange crunching noises in the neck. I had been given a set of exercises by a physiotherapist that I kept up with despite the alarming noises it seemed to help. Eventually in my 50’s I got a diagnosis of overt hypothyroidism. All the cracking noises disappeared once I was on an optimal dose of thyroid hormones i did read why the tendons make a noise But have forgotten what it was but it happens with hypothyroidism. May be you need a medication tweak. If you can afford it see an osteopath (they have a specific set of letters after their name to indicate they are qualified so just make sure they have those) they do a long training about 5 years just on backs, skeleton, function etc my doc said they only got one day so osteopaths have far superior knowledge. Deffo get all your vits etc tested but if you have a healthy diet I’d suspect the meds are not right so you’re not able to absorb all the vitamins and minerals you need. Also T3 must be important here - it always is! So make sure your levels are good. The NHS don’t usually test Free T3 ☹️ Which means you may need to get a private blood test. Hope that helps & I hasten to add, despite all my suffering with the two problems I am still physically active and get along fine now. I take NDT. The AS often goes into remission which I think must have happened in my case.

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posthinking01

Hi there - crunching of the joints and tendons is actually a low vitamin C issue - the tendons rely on C .

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thyr01d

Ah, this is interesting too, I do have other symptoms of low vitamin C, thanks

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TSH110

I think you will find T3 is highly relevant in tendonopathies according to recent research:

ncbi.nlm.nih.gov/pmc/articl...

Musclo-skeketal disorders are known to be more common in those with hypothyroidism. I think it may be far more complicated than just being down to low levels of vitamin c. Thyroid hormones scream out at me as the underlying causal factor especially as mine greatly improved with with NDT but taking hefty doses of vitamin c did nothing. I’d postulate that the vitamin c deficiency and the cracking noises in the tendons etc are being caused by the same underlying problem rather than them being directly related and one causing the other. Do you have a link to research linking cracking noises in the neck to vit c deficiency you can let me have as I would like to know more about the mechanisms by which the vitamin c causes it. When I was looking into I have no recollection of vitamin c coming up in the info I managed to find.

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posthinking01

The info I was offering is assuming that the people concerned are 'thyroid' people who more often than not are having their thyroid needs met - as indeed happened to me - this would probably result in them having to stay where they are in relation to their thyroid issues - so I totally agree with you it is thyroid related but.........in the interim feed the adrenals that are trying to cope with the imbalance - hence we should feed the adrenals with C to enable them to take the pressure - it has to be remembered that the higher the thyroid hormone being taken the adrenals need to be adjusted up as well - as the system revs up - then the adrenals need to help cope with that uptake of energy and C would help that and also B complex of course and other supplements for the thyroid generally. I will try to find my research stuff on tendonitis etc. and C.

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TSH110

There is some scholarly info about vit c and B12 alleviating osteoarthritis symptoms but I haven’t found anything discussing a direct causative link between crepitus of the neck and vit c deficiency. Ankylosing spondylitis is a known cause of crepitus and it is far more common in those with Hashimotos than the general population, mind it is not the only thing, but it certainly fits my History plus the Achilles tendinitis I had. I also had a frozen shoulder, costocondritis, bakers cysts in my knees and problems with my TMJ. Looks like I might be developing Dupchrens contracture now ☹️. Quite a few of my close relatives have Dupchrens, TMJ trouble, and frozen shoulder as well as thyroid disorder. Nevertheless, I am not too bad - I just ignore any aches and pains they are nowhere near as numerous or as bad as when I was untreated for hypo 😊

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thyr01d
thyr01d
in reply to TSH110

Very interesting reply.

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Mamapea1

Yes, I've also had the very loud neck cracks and crunches for over 25 years...I have always felt it was somehow related to thyroid issues, as it appeared when I was very hypo. It has become somewhat better since I've been on T3, but it hasn't gone altogether, and often takes me by surprise as it's so loud...I also occasionally get the dull ache at the base of the skull. I have never had an explanation of what it actually is from Drs or oestoepaths, etc. so I can't help there but it would be great to know.

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TSH110
TSH110
in reply to Mamapea1

It’s called crepitus after a supposed Roman god of farting!

This gives quite a good explanation of what actually happens to make the noises:

popsci.com/joints-pop-crack...

The noises were recorded by early investigators who believed each different noise was indicative of a particular disorder. I have to admit I rather like that idea! I think arthroscopes do something similar it’s mentioned here in this rather fun article about crepitus too:

running-physio.com/crepitus/

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Mamapea1
Mamapea1
in reply to TSH110

Haha! Thank you for the links. I've had it for ages but it's definitely improved a lot on T3, and it doesn't seem to have caused any lasting damage (fingers crossed) but other people sometimes get alarmed when it's really loud 😂 I also feel better when my necks 'cracked', although it's not painful, it just feels 'wrong' until it cracks back. I have had a lot of aching in the neck (and everywhere else😳) when hypo though, and I was never able to look upwards at one time as my neck was so stiff. Thank goodness for T3!

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TSH110
TSH110
in reply to Mamapea1

It’s looking to the sides that gives me gipp like my head’s glued on my neck into forward mode only!

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Mamapea1
Mamapea1
in reply to TSH110

Ah yes, that was me too! I would have to turn my whole body around if someone approached/spoke to me from the side. Crossing a busy road was exhausting!😳 I used to try and do the neck exercises (as advised by GP and physio) but it was hopeless...they even gave me a neck collar to wear at one point.

I put my recovery in that area down to replenishing my depleted magnesium, but as we all know, the body works as a whole, and I was utterly depleted in everything so it's hard to tell. I received a course of Vit D injections (which didn't work) as my level when eventually tested was 4 so I expect they worsened my already low magnesium levels...I certainly felt worse afterwards, and I definitely can't manage without supplementing magnesium.

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TSH110
TSH110
in reply to Mamapea1

Oh gosh that’s me too I have to turn my whole body from the waist on my bicycle to look back for a right turn even then I can often only manage a quick glimpse and do it several times to be sure it’s safe to signal then all over again before committing to moving out - it all used to be so seamless, I never even thought about it and I take extra care crossing the road I could do with head mounted wing mirrors - bet I’d get the blind spot! A ready of 4 fir vitD sounds terrible mine was 29 and I was a mess!

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Mamapea1
Mamapea1
in reply to TSH110

Oh it was terrible. I had gone down to the GP so many times, but of course after decades of being on Levo and it not working, I had a mountain of symptoms and they treat you like a demented hypochondriac (I will admit to being demented at that point, but not the latter) and I had been diagnosed with more diseases than was possible for one person to have ~ basically everything except hypothyroidism, as on 250/300mcg of Levo, TSH was 'fine'😳

I was seeing so many 'specialists' (who had diagnosed the various diseases) and so when I kept going back with complaints, they made me feel like an ungrateful time waster. Then when I said the myriad of drugs from said specialists were making me worse and refused to take them, my GP just wrote disparaging remarks in my med notes.

There was no way any of them would check for T3 or Vit deficiencies, and I became too ill and disabled to argue with them anymore. I was in a terrible state, unable to walk unaided, drinking from a baby's beaker because of tremors, (B12 def) and I had developed bone deformities. I had a large dent in the top of my head...I could 'vanish' my whole forefinger in it lengthways, and the GP said "hasn't it always been there?"😳

I won't repeat what one of the daughters said (a feisty one😂) but she marched down to the GP and demanded they do tests ~ she thought I had SIBO due to being hypo and she was right. GP said she'd never heard of it and it must be 'a made up thing on the internet' and told her not to look online (in a very condescending manner) and I 'definitely didn't have a Vit D deficiency' because I had a tan.

So when the results came back and they were below range and D was 4, they all panicked and I had to go straight to hospital for the Vit D injections, which made me feel worse and didn't raise my levels much at all. I decided to sort myself out after that, as, like many on here, I figured following their protocol re thyroid disease was a very dangerous business.

I haven't really been there for years now, I went once to see the nurse for an annual breathing check, where she marvelled at my improvement, and once to collect a prescription for antibiotics. They've all signed me off now, despite all my 'conditions' as I'm so improved...or perhaps there's no money to be made from me now. All those years of suffering and investigating other conditions for nothing. Pfft.

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TSH110
TSH110
in reply to Mamapea1

Sounds a lot like what I went through before I got diagnosed with hypothyroidism and I kept asking if that might be the problem given the family predisposition but was poo pooed . I had had a thyroid function test a while back at the behest of my mother’s consultant because her condition was highly inheritable but was told everything was fine. I was surprised because I already had many symptoms but just believed them thinking the blood test must be totally reliable. I had so many problems and cos of that test I ended up believing I was a hypochondriac. I gave up on doctors and became progressively unwell but my mind was so disordered I did not realise how dangerous it had become. I finally mustered all my energy to have one last go at seeing someone and after an initial ‘how about some antidepressants?’ 😡🤯🤬 I managed to get this one to see sense and help me. Good job - that man saved my life just in the nick of time. He was fantastic. That is a huge dose of Levo if I went over 125 mcg I just went crazy but I did not feel well on any dose of it. NDT much better for me. Luckily bar the pre treatment decades I only suffered on Levo for about 2 years but that was more than long enough!

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Mamapea1
Mamapea1
in reply to TSH110

Dreadful😔 we all start off with so much faith in the medical profession, but when it comes to things like this, they're seriously lacking. They really do the hard sell on the antidepressants don't they? I could've wallpapered my whole house with antidepressant prescriptions, and all the other useless meds. It's enough to make you actually need the damned things! Thank goodness you found someone to listen, and just in time😳

I was very ill on the Levo, but they would give me endless amounts. On days when I forgot to take them, or because was too ill to even get up, I felt better! And yet my own thyroid had no output at all. They were poisonous to me, and it worsened over time. In the very beginning, I collapsed on the beach at Lyme Regis, on the hottest day of the year. I think I was taking 250mcg then. I suddenly went a weird kind of cold, and felt ill in a way I didn't recognise. I just had time to say ooh! I feel ill, and the next thing I know I'm wrapped in foil and a paramedic is standing over me, asking if I've had my thyroid removed, because he can't see a scar. I said no, but it has no output and I confirmed the dose of Levo that I took. He says he's given me an injection, and I'll be ok for now, but when I get home, I have to tell my GP to change my thyroid meds, as the T4 isn't working.

I had no idea at that time what any of it meant, but I was worried, and knew I wasn't well at all. GP said she didn't know what he was talking about, and that there was nothing else. She said paramedics only know about life/death situations, and nothing at all about real medicine!😡 The worst part of all this is that I actually believed her, despite feeling that the guy had played a huge part in my recovery that day, and the fact that the GP had no explanation as to what had happened to me! I can't help thinking that if I'd seen someone who actually understood thyroid disorders back then, I would have been given different meds, and would not have been ill for decades. They always make out it's a simple disease with a simple solution, but for many, it's not.

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TSH110
TSH110
in reply to Mamapea1

I had episodes of syncope the worst one on my bike cycling on a club run the guy I was chatting to riding two up suddenly started to dissolve a bit like a jigsaw puzzle falling to bits Apparently I just keeled over not putting my hands up to protect my head so was already out cold before I hit the deck. Unfortunately the person behind me was unable to stop and rode over me causing my worst injuries. I could not understand why I had ended up in such a mess until someone spilt the beans. It wasn’t his fault I just wish he had been honest about it. I had a massive haemotoma on my thigh - could not walk it was so huge. I have a dish now where it was. I went to the drop in centre because it was so nasty they asked if all the staff could come and see it out of interest because it was so huge and they were unlikely to see anything similar - I didn’t mind being a medical curiosity, so they all trooped in and gasped! My own GP was useless He said I could go to work - I could hardly walk I had to be carried up the stairs to bed! My leg was black from top to bottom and twice the size of the other one - what a pratt. The drop in centre said I should see someone else as I should not be working so I saw a doc as a temp resident because I had to be looked after by a friend he was horrified and said no way should I be at work till it improved. I think you can get sudden drops in blood pressure with untreated hypothyroidism which could explain it. My mother passed out many times before diagnosis. It is very dangerous but is not always recognised as a serious matter. The temp doc expressed shock that I was not being tested further to find out why it happened. Sounds like that paramedic was on the ball. As if medical knowledge can only be garnered by doctors - it is clearly an absurd assertion. Do you think yours was blood pressure related?

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Mamapea1
Mamapea1
in reply to TSH110

That sounds awful! It must've been agony. I guess it depends where you are and what you're doing ~ it can obviously be very dangerous indeed😳 I have had low BP, but not so I'd pass out...a bit of dizziness if I got up too quick, etc. I don't know what it was that day, but I didn't feel faint, or light headed, just very cold and ill. I was never able to find out what was in the injection I had either. I have wondered since if it was T3, but I don't even know if that's possible. After the lengthy fiasco at the Drs, I eventually requested a copy of my medical notes. Unfortunately, all the ones from that time were 'missing'. All the notes from when I was first diagnosed, with the 'highest antibody count they have ever seen' (I wanted to know what that was, too) and from when I was paralysed in hospital, all 'missing'. I don't know what to make of it. It's annoyed me, and I keep meaning to take it further ~ I have asked them many times to try and track them down or explain where they went...I imagine they were lost when they all got sent away to be uploaded, but it seems odd as it's only certain random, but pertinent notes. I had a stillborn baby, and those details are also gone. The ones I did get caused me enormous stress anyway...the things they write about you😱 I did discover that during my last pregnancy my TSH never went below 15, but they never mentioned it! Fortunately, she's a lovely young woman and is absolutely fine😊

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TSH110
TSH110
in reply to Mamapea1

Phew you were so lucky with your daughter! Mine were lost when I went for a load of unnecessary tests and investigations at the local hospital as soon as they get moved they can be easily misplaced. I worked in medical records for a short while I was really good at locating them and guessing how they were most likely to have been misfiled. I did better that most according to the boss but was still shocked at how many could still not be located. I suppose they could have been deliberately tampered with but poor paper filing could easily account for bits being missing especially if it was to do with a hospital. Sorry they were so upsetting. I don’t know I’d want to read mine I am clear in my head that I suffered medical negligence in the thyroid department but not deliberate just due to ignorance if they put rubbish in my notes about me that was down to their incompetence and is their problem - but I would like to see my first thyroid function test and if it really was ‘normal’

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Lora7again

I have this and had a neck x-ray about 3 years ago which I think made me have a relapse with my thyroid disease. I was told it was just wear and tear as I am getting older at 60. I did see a physio but that made it worse so I stopped.

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TSH110
TSH110
in reply to Lora7again

That’s a bad do. Wear and tear covers an awful lot of possibilities I think it’s used as a cop out to avoid proper investigation. If they want us to work till we’re 68 they should strive to keep us fully functioning to allow us do that work! They’re taking NI payments off us but writing us off as clapped out and no longer worth trying to fix! If we’ve got wear and tear and told no medical help is available we should be able to demand a pension that to allows us to retire!

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Mamapea1
Mamapea1
in reply to TSH110

Hear hear! My thoughts exactly.

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Clarrisa

I just recently heard grinding like noise while turning my head from side to side (I had resumed exercising). I then went to the expense of going to a Alexander Technique teacher & after the first appointment I turned my head from side to side & did not experience noise.

FYI: The teacher says she has taught for 20 years. She received her early Alexander training in Israel & says it is a little different than what she has experienced in the U.S. I went to her for lower back issues not neck, but much of the focus seems on how you carry your head on your spine.

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AnneEvo

I did have this a few months ago - I cricked my neck every time I turned my head to the left. I had it for a few weeks at least. It just stopped. Can't offer any advice, sorry.

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Lora7again

I have read that the reason we are getting this neck pain is because we use mobile phones all the time.

spine-health.com/conditions...

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TSH110
TSH110
in reply to Lora7again

Mine started long before the era of mobile phones and I was very a very slow adopter! They do have a point.

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jimh111

I used to get sharp pains when playing badminton, really severe shocks that were frightening. I started doing exercises before playing. Holding my arms behind my back and turning my head from left to right stretching it, looking down, horizontal and up. Solved the problem. Just invented this exercise on a hunch. Maybe if the neck muscles are stiff the neck traps nerves.

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TSH110
TSH110
in reply to jimh111

I adore badminton but was gutted to discover since hypo hit, I have lost my lethal smash 😢 it was good enough to scare internationals! I think my timing is no longer precise enough. I was never a great tactician. A physiotherapist suggested something very similar to those exercises you invented, to me but keeping the hands behind the back together with fingers turned upwards taking them toward the back and then pointing up. If that makes sense like contorted back praying 😂Then do the neck moves. I think she said it helped to released trapped nerves. It was certainly helpful. Must blow the dust off my badders bat - I love annoying people by calling it that as they tut and say ‘racquet’. The NDT had not restored the smash last time I was playing regularly, but I like to remain optimistic!

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jimh111
jimh111
in reply to TSH110

My exercise is very similar, I hold my hands together behind my back to keep my shoulders straight. I should do it more often because it keeps my neck flexible and makes it easier to turn my head when driving, when looking over my shoulder.

The most specific sign of hypothyroidism is slow reflexes, usually tested in the ankle. I used simeticone to get rid of PBDEs (endocrine disrupting chemicals) which were causing my resistance to thyroid hormone (RTH). After a couple of months I suffered supraventricular tachycardia as the RTH resolved and I was on too much hormone. I was able to halve my L-T3 dose. When I next played badminton I found I was able to hit the shuttle from one end of the court to the other, I could never do that. I put it down to my slow reflexes being restored. I'm still hopeless at badminton but it's good exercise.

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TSH110
TSH110
in reply to jimh111

That is very interesting is simetcone easy to get hold of? If so anything one should be careful of if taking it? It sounds like a highly plausible reason for the lack of timing. I found the Danish swipe a useful way of hitting backhands to the base line, you literally swipe at the shuttle with a flat stroke and it goes like a rocket quite low so tricky to return. The Danish team’s women used it because they found a backhand clear difficult as they got pushed back towards the base line - it was remarkably effective - too high and you’ve had it! Yes it is great exercise my favourite ever game! I was told to flip over the shoulder with a towel to get the action of an over the shoulder backhand clear - it did not work! I found even a forehand clear very difficult after I was diagnosed yet I could belt them perfectly, really high up to hit the line. Feather shuttles help. Much more responsive. Yes a wonderful game indeed.

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jimh111
jimh111
in reply to TSH110

I'm not skilled enough to know the particular shots. Perhaps the Danish women practiced the Danish swipe on their husbands?

Simeticone is over the counter, sold as a remedy for trapped wind (e.g. 'WindEze'). I don't believe it is any use for trapped wind, this was based on the fact that simeticone is used in endoscopy as an antifoaming agent to give a clear image. It is not absorbed and so safe but I've just found out that some people can have a reaction to it, probably to the fillers. I believe it is a cheap and effective way of eliminating endocrine disrupting chemicals, at least the lipophillic ones which include the ones that affect thyroid hormone action.

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TSH110
TSH110
in reply to jimh111

Well that’s a surprise and amusingly appropriate to this post about crepitus - who is supposed to be the Roman god of farting!! I have nothing to loose by trying it, bar some wind...possibly! Thanks for the tip.

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jimh111
jimh111
in reply to TSH110

It took two months to have an effect in my case. PBDEs (the EDC I'm concerned about) have very long elimination half lives. Consequently tiny amounts build up over time. Simeticone eliminates a small amount of toxin but over time this chips away at the body burden.

You can take simple steps to reduce exposure to PBDEs. Remove old furniture or foam backed carpets (made in 1970s to 2005), damp dust or HEPA vacuum the house and car and open windowsoccasionally for a few minutes when there is a gentle breeze. Also avoid fats, especially hidden fat since endocrine toxins are lipophillic.

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TSH110
TSH110
in reply to jimh111

Thanks for those tips. I hate carpets - such unhygienic things, the bed & sofa are later than that and the vacuum has a hepa (I ought to use it more often tho!) so all good on that front. Not so keen to hear my beloved Cheshire cheese could be poisoning me ☹️

How much did you take - just what the packet recommends? I react super fast to drugs (genes according to 23&me and it is my experience that is the case) would I get a turbo boost with this do you think?

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jimh111
jimh111
in reply to TSH110

I take the recommended amout, or a little less because if it contains sorbitol it can cause loose stools. Sorbitol is inert in the sense that you do not absorb it so you shouldn't react any quicker, the fillers could cause a reaction. The 'active' component is inactive!

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