Neck and muscle pain and feel spaced out despite increase in Levothyroxine

[Peanut31]

Hi

I’m at my wits end with this thyroid journey, I’m currently away on holiday (Whitby) and I’m desperate to feel normal and enjoy myself.

Some of my thyroid symptoms have disappeared, but, I’m still suffering major neck and muscle stiffness, hair loss and feeling spaced out.

I saw my GP last week and based on my recent results (below) he was going to keep me on my current dosage of Levothyroxine 100mcg.

However, from advice on here and also informing him I still had symptoms and felt awful I asked for an increase.

Blood results on 100mcg Levothyroxine

TSH 0.24(0.27-4.5)

T3 4.71 (3.1-6.8)

T4 17.7 (11.0-23.0)

He agreed to up it to 125 mcg, having done further research I’m convinced I have fibromyalgia, as despite going to physio, chiropractor, regular massages my neck stiffness doesn’t disappear.

I have Hashimoto’s and gluten free, my neck stiffness was one of my main symptoms before I was diagnosed.

I decided to add T3, this has helped me considerably with me not feeling so tired in the morning, but my neck stiffness is terrible.

I was taking 1/4 tablet T3 for 2 weeks, then I’ve just recently increased it to 1/2 tablet.

I’m due another blood test in 5 weeks with my GP and I don’t want to jeopardise my results taking T3 as the GP doesn’t know.

Should I keep increasing my T3?

I’ve recently brought a Fitbit, months ago and as my right side of my shoulders and neck is stiffer than my left, I’ve stopped wearing it as again doing research some people have stated it caused them pain.

Any advice greatly appreciated.

Best wishes

Peanut31

[Mary-intussuception]

Have you ever had any blood tests to check levels of following nutrients -

Vitamin D, Calcium

B12, Folate

and Ferritin?

If not, ask GP to do these when you get home? Any deficiencies should be addressed with prescribed supplements. You can put test results and dose of any supplements given on here for people to comment.

Not sure what to say about your neck - you've probably tried everything - heat, hot shower, rest, Ibuprofen and Paracetamol (or Cocodamol).

Ask for investigations when you get home ? Ever had neck xray? Referal to Orthopaedics?

Hope you get some relief from the pain and stiffness and have a lovely holiday.

🍦

[shaws Administrator]

If you think you have Fibromyalgia you might have to trial T3 only. This link may be helpful:

web.archive.org/web/2010103...

Go to date January 1, 2004 on the following link:

web.archive.org/web/2010103...

[Peanut31 in reply to shaws]

Thanks Shaws

I think it was you that sent me a link before, that’s when I read it and ordered T3 and added it recently.

I’ll have a read through this one you have added.

Best wishes

Peanut31

[Peanut31]

Hi

Yes all vitamins are correct as I did them privately and posted them on here.

I’ve had a scan and nothing showed up so it muscular.

Best wishes

Peanut31

[Marz]

Maybe check your neck posture with someone who practices The Alexander Technique. Many of us carry our upper body in the wrong place ...

Hope you soon feel more comfy 😊

[Toria_Star]

Hi Peanut, as a trained sports and remedial massage therapist (who suffers from upper back and neck muscle stiffness also) I suggest you look for recommendations for a good local sports and remedial massage.

If you find a good one then they should complete a full medical history consultation with you as well as looking at the physiology of your back and neck (if not your whole body). They should then do some checks so make sure there is no serious damage before agreeing a treatment plan with you.

The treatment will involve some deep tissue massage but may also use a variety of techniques to help the muscles re-set to their usual state. The treatment may be a little uncomfortable but any good therapist will continually check in with you about the pressure and will keep you informed about what they are doing.

I know it can seem expensive (average £40/£45 an hour where I live) but you should feel the difference after the first treatment (bit of muscle soreness is normal in the first 24/48 hours and then you should feel an improvment). If you are really struggling then it's worth going for a few treatments if you can afford it. Generally one per week would give enough recovery time in between and is ideal for working on a specific problem.

You could try a physio and they would give some exercise's as well as potentially doing some soft tissue work but from personal experience the NHS ones weren't very hands on so you might have to go private anyway. Hope that helps a bit. I feel your pain!

[Hidden]

I have a training in remedial massage but if it is a hormone which needs attention, deep muscle massage may not work. You could try an over the counter magnesium and calcium carbonate tablet. eg Reniiies. Head and neck pain might be a sign of hypertension - high BP. If you are a female this can be linked to fluid retention due to menopause or hormone imbalances. Other vitamins which may be recommended by contributors to this website are vitamin D and vitamin D3 which you can buy at certain online chemists. Vitamin D is found in butter and dark green leaf vegetables broccoli kale. Calcium is recommended for

muscle spasm and pain. Other remedies which might help could be drinking some tonic water which contains quinine, or eating a banana which has potassium.

I would go back to the GP and have your BP taken, and ask about side effects from thyroid medication. Though your vits seem ok look out for lower than average results as optimum levels are recommended. Tests are not done on vitamin K or vitamin C so you might take a top up of c and other bvits b9 -b6.

[Zeph43]

Hi Peanut

I would agree with Marz about seeking some help and assessment of your posture which may well be the root cause of the neck muscle pain. I teach something called Somatic Education which is all about releasing muscle tension and restoring the body's own equilibrium and posture.

Many of us due to our jobs, hobbies, sports etc gradually lose the ability to release muscle tension so those muscles become permanently contracted and no amount of stretching or massage provides long term relief. I suggest you look for a somatics practitioner who will be able to advise you and hopefully help. My website will give you more info on somatics, purelysomatics.com if you are interested.

[Peanut31 in reply to Zeph43]

Thanks for the advice

I don’t know if this is a coincidence, but I have stopped wearing my Fitbit since I arrived on holiday, and as the days have gone by the pain and stiffness is getting less.

Doing further research it appears some people have reported neck/ shoulder stiffness since wearing it.

My neck stiffness seem to be only on my right hand side, which is where I have my Fitbit on.

It has something to do with the sciatica nerves.

I have also had issues with my neck but never this intense and down one side.

I did have physio and went to see a chiropractor, I also have regular massages, but as you say I perhaps need a more specialist person that can address my posture.

Best wishes

Peanut31

[Zeph43 in reply to Peanut31]

Hi Peanuts

Of course being on holiday should reduce stress, either emotional or physical, which is often the cause of muscle pain. If you have stopped sitting in front of a computer all day, for example, then that relieves the habituation of neck and shoulder muscle contraction.

Interesting that you say it is to do with the sciatic nerve as they run from the lower back, buttocks and down the legs to your feet, they are not directly involved in neck pain, although tight lower back muscles which can cause sciatica, do affect the neck and shoulders.

I agree you need some specialist help to sort this out.

[Framboise in reply to Zeph43]

Zeph43 thanks for your website details, I am learning Hanna somatics and it was a difficult job to find anyone who taught it in Sussex or Kent. For anyone reading this, somatics is a wonderfully gentle form of exercise to retrain muscles and brain.

[SilverAvocado]

Hi Peanut31,only just seen this. I'm surprised that no one has mentioned your freeT3 is in the middle of the range. Most people to feel well will need it to be near the top of the range. It's possible that your pain will improve on an optimal dose.

There's definitely good evidence for adding more T3. Generally I would try to change a dose once, then wait 6 weeks. Ideally have a blood test, but if that's not possible take stock of general symptoms, and then consider another adjustment. This is late advice, but if you adjust Levothyroxine give it a good time to settle down before adding T3. Both T4 (Levothyroxine), and T3 are thyroid hormone replacement, so they are both added together to be your total dose once they get into your blood.

[Peanut31 in reply to SilverAvocado]

Thanks for your reply,

I’ve ditched T4 altogether.

As soon as I stopped taking it and took T3 only, my neck pain disappeared.

Best wishes

Peanut31

[SilverAvocado in reply to Peanut31]

Wow, brilliant news!

[Toto88 in reply to Peanut31]

Hi there peanut - I wonder plz if you would so kind enough to help me. I’ve been suffering with terrible head, jaw & neck pain since July this year. I’ve just recently saw some of my thyroid panels & to me I look like I’m still hypothyroid & people on here have suggested that I add T3 ! I’ve found a private endocrinologist who I’m hopefully going to see soon but I just wondered plz - when u kept upping your Levo did you find no release from your neck pain at all ? I’ve upped mine for two months & nothing has helped ! Is it ok to take T3 on just its own ? Thanks for your time x I’ve had brain & neck MRI but all are normal - I do have a thoracic disc herniated but I’m not sure if that would cause all this ? I’ve never had T3 tested ! I’m very ill at the mo & just trying to get through each day - NHS have been awful with me & im at my witts end x

[Peanut31 in reply to Toto88]

Hi

I stopped my levo as no matter how much I was on, got to 125mcg my neck pain was awful.

I tried T3 on its own and it was horrendous, I had pounding headache, thumping in my ears and Terrible neck pain.

I’m now self medicating on NDT with a small amount of Levothyroxine.

If I take too much NDT it send my T3 results over and I feel awful, but my T4 results are too low hence adding T4.

I ditched my private endo as he said no medication would help and left me in a mess.

I’ve learnt from my own experience it’s a case of having to sort yourself out and experiment.

Take notes, keep a diary and have plenty of patience.

Best wishes

Peanut31

[Toto88]

So do you mean natural dessicated ? Is it armour by any chance ?