Neck and shoulder pain, with stiffness - Thyroid UK

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Neck and shoulder pain, with stiffness

Ihave3kids profile image
14 Replies

Hello everyone,

I have a diagnosis of M.E. My GP refuses to treat me for hypothyroidism but I see a Dr M in Wales who prescribed NDT. Pain has not been a part of my M.E. since I became ill in 2007.

Recently I have been experiencing stiffness across the tops of my feet and now have stiffness in my neck and shoulders, accompanied by tremendous soreness.

Here are my recent blood test results.

My last ESR was 6. Can’t find the result to supply the ranges for that. I thought I might have polymyalgia rheumatica but the inflammatory markets are supposed to be hugely raised in that case and mine don’t seem to be.

Anyone else experience this type of pain.

I’m on 12.5mcg T3 at 3.30am

1 grain NDT at 8.30am

Just added in 1/4 grain NDT at 1.30pm.

Very sensitive adrenals, so trying to up NDT slowly on advice of my private doctor.

Any thoughts appreciated? Are my aches and pains possibly due to hypothyroidism or not? I don’t want to be labelled as having fibro. My pain does not correlate with the tender points of fibro.

Thank you to anyone who takes time to reply.

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14 Replies

I am very Hypothyroid and have Hashimoto’s. I get a lot of pain but I have done since being diagnosed with relapsing and remitting central nervous system disease ? NMOSD in 2012. I was only diagnosed with Hashimoto’s last year and became severely hypothyroid following a diagnostic lobectomy for a symptomatic nodule which was benign. My pain has intensified especially in my legs and feet but my neurologist has explained that anything that upsets the metabolic processes will irritate the inflammation in my brain and therefore make the pain worse. It’s complicated so I can’t hand on heart say that the pain increase is due to my Hypothyroidism as it’s more likely the disruption caused by that aggravating the CNS disease

Ihave3kids profile image
Ihave3kids in reply to

Thank you. This feels like a systemic inflammation to me. It flared up a while ago and back down again. I have never heard of your condition. I’m sorry you are suffering in this way. I will google it to see if I can draw and useful comparisons from it.

Clutter profile image
Clutter

Ihave3kids,

You are undermedicated to have TSH 3.29 and that could be why you are experiencing aches and pains.

Antibodies are negative for Hashimoto's.

It may be worth having vitD tested as vitD deficiency can cause bone pain. City Assays via thyroiduk.org.uk/tuk/testin... costs £28 for a home test.

Are you supplementing B12?

Folate is optimal halfway through range. Eating more leafy green veg will raise ferritin.

Ferritin is optimal halfway through range. You can raise ferritin by eating more iron rich food. Liver eaten once a week is a good source of iron.

CRP is also an inflammation marker and <2.0 is good.

Ihave3kids profile image
Ihave3kids in reply toClutter

Thank you. I inject B12. I was supplementing Vit D but stopped a while ago. I might try and ask the GP to test it but if not, I will use your link. Does hypothyroid pain manifest as soreness? My neck and shoulder muscles are just ridiculously sore; almost unbearable.

Clutter profile image
Clutter in reply toIhave3kids

Ihave3kids,

I had muscle soreness and pain and couldn't life my arms up to brush my hair. Surgeon and endo suggested it was fibro but I developed it after thyroidectomy and it resolved after my FT3 level was good.

Ihave3kids profile image
Ihave3kids in reply toClutter

Yes, I fear that the NHS will try to dump another diagnosis on me, rather than address the thyroid issue. I struggle to distinguish my M.E. from hypothyroidism and believe they may be one and the same thing (although I’m not totally sure) and after reading Dr John Lowe’s work and views on fibro and thyroid hormone, I am very reluctant to accept that fibromyalgia has suddenly popped up after 10 years. More likely my thyroid condition has been left untreated for too long and is now affecting my muscles.

I think I still need to rule out PMR though, as my M.E. doctor said she has encountered a fair few patients with M.E. and PMR and needs to investigate the connection.

Although my CRP looks ok, it was half of that result, when it was last checked, 12 months before that. I wonder if anyone with any experience of PMR could comment.

Clutter profile image
Clutter in reply toIhave3kids

Ihave3kids,

If the muscle soreness and pain is due to hypothyroidism it will resolve once you are optimally dosed.

Type "PMR" into the Search Thyroid UK box to see if there are posts on PMR.

Ihave3kids profile image
Ihave3kids in reply toClutter

Thank you. I will do.

shaws profile image
shawsAdministrator in reply toIhave3kids

I have read that ME, CFS, and Fibro were diagnosed about ten years after the introduction of blood tests and levothyroxine. So I assume that when people were diagnosed upon clinical symptoms alone they were given NDT. If the felt better they continued.

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Ihave3kids profile image
Ihave3kids in reply toshaws

Yes, I agree. There’s definitely an overlap of these illnesses or they are variations of a similar theme, which involves thyroid and adrenal probs.

Hellonwheels profile image
Hellonwheels

Until I was properly dosed on NDT, my body hurt like hell---knees, feet, shoulders, upper arms especially. Once dosed properly all of these stopped within a few months, and I am now, for the most part, back to my old self

Ihave3kids profile image
Ihave3kids in reply toHellonwheels

That is good to hear. My left foot is the worst. I’ve now been to the GP who is doing blood tests, as my symptoms got worse after I posted this and she is questioning rheumatoid arthritis. I really do hope it’s my hypothyroidism and not RA. Glad you resolved your aches and pains!

JennaKravitz profile image
JennaKravitz

I was terrified that I might have the same problem as you. That is, the symptoms were very similar to M. E. But this tightness of the muscles, pain in the limbs, compression of the pelvis resulted from post-traumatic syndrome, which changed my whole life for the worse and affected my health. I already thought that no one would help me except a psychiatrist, who would only treat my mind. Still, I began to take a course of rehabilitation, Pilates, and physical therapy zakerchiropractic.com/chiro... , and all the symptoms began to go away. But I believed that I had a thyroid disease. Guys, I feel very sorry for you, and I understand your pain because I lived and believed that I was one of you for about six months. I wish everyone not to feel this penetrating pain, cure their diagnosis, and not remember it. Or at least I want to be able to live an ordinary life as if nothing ever happened.

5219 profile image
5219

Hi I have had pain in my right shoulder for a year or more and looking at the symptoms I think it’s frozen shoulder which can be as a result of Hypothyroidism. I am now suffering with very tight shoulder muscles both sides and is now radiating into my neck. I’m having difficulty getting comfortable in bed and trouble sleeping. Have been to physio and an osteopath and nothing has helped. Just taking painkillers and anti inflammatory medication. I’m going to see my endocrinologist in December hopefully she will do a full range of bloods to see if anything has changed. It’s very painful isn’t it? Gp dismisses it as being connected to thyroid but so many things are. Gp’s just don’t seem to want to know. So fed up with them saying your TSH is in range so you are ok. Not the case as I have found out in the past. Hope you get to the bottom what is causing you pain.

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