Hi all, hope everyone is well and staying sane...crazy days! Does anyone have any experience of muscle pain with Hashi's?

[Topes009]

Hashi's muscle pain, shoulder issue.

[Yeswithasmile]

Hi Topes009

Most definitely. For a long time. I may have a slight mechanical issue as in I’m hyper mobile but I can say treating with levothyroxine has helped. Are you on any medication?

Shoulder pain is slightly better these days although I went about 7-8 years with bad frozen shoulders. I used to think if I could strap the top half of my arms to my body it would be fine. Raising the whole arm was the issue!! Had scans etc but nothing ever showed up. Obviously that doesn’t help you to be taken seriously. Although I would say I was referred to the pain clinic and they were fantastic. Sometimes it helps just for someone to treat you like you’re not mad!!

How long has it been painful? Obviously you should get it checked just to make sure you haven’t damaged it in any way.

[Yeswithasmile]

Just read your other posts and made a mental note to do that before responding in future!

You have certainly been through it and I’m so very sorry to read about your loss. What a strong person you have had to be x.

I can see you are medicated and wonder if retesting is an option? I’m sure others on here will have so good advice though. x.

[Topes009 in reply to Yeswithasmile]

Thank you, yes, it's been a painful life at times but I did eventually have my daughter, she is a miracle I think. ❤️I recently had a whole heap of tests done, although not FT4 as GP doesn't do that, I have felt for a long time that just T4 cannot replace the hormones my thyroid would have produced.

These pains started last Feb after a holiday where I walked a lot, my upper arms started hurting and then I realised I had lost some mobility in both shoulders, of course lockdown hit so I haven't seen a GP but am having physio for the rotator cuff and inflamed tendons. I have had bad cramp in my feet for years and my hips are now starting to hurt after walking. I feel it's linked to Hashi's, I had a private appt with a professor who I had hoped would help, he was however far too bothered about my suppressed TSH for me to have faith in him, wanted to introduce NDT but with a reduced dose of levo which would have resulted in roughly just under 100mcg T4 equivalent. I do have the NDT and would love to take them just am unsure about doing it without guidance and starting only to find I cannot get anymore when they run out.

I read more and more about gluten free, I think I will have to try this. I have also ordered some Curcumin c3 to hopefully reduce the inflammation and pain.

Phew, bit of a long post...

[Yeswithasmile in reply to Topes009]

Although painful in many ways but wonderful too. A proper little miracle! Congratulations.

If it were me I’d get some private bloods done. Although I have been hashi for 5-6 years I didn’t really think I needed to be my own expert until last year so I am on the start of my journey really. Unable to give you advice as I realise there are so many far more educated and knowledgeable people than me on here to advise you.

So you realise I sympathise with your thoughts on wanting an experts doctors opinion to guide you along but I have to say I think they are few and far between.

I now realise that the only person that is going to help you feel better is you. With some help from this forum you can decide what your body needs and how to accomplish a better quality of life. I am convinced.

The aches and pains and rotor cuff blah blah i am afraid are sounding all too familiar. One rheumatologist said that I shouldn’t have surgery on them (wasn’t my intention anyway) and never have a hysterectomy as things will only get worse 🙄.

If you get your bloods done at least you can see exactly what is what. Medichecks do thyroid Thursday still I think or thyroiduk have a discount code. (You may well be aware of this anyway 😊) You will then see if it’s your t4 or both and possibly someone here can guide you on how to deal with it first. Although from what read gluten free seems a good way to start.

It’s so frustrating about the supply of everything at the moment. We can only pray that things start to improve now. 🤞🏻🤞🏻🤞🏻 X.

You thought yours was a long post 🤣

[Smilykaf]

Hello, that is very interesting as I have been saying my joints have hurt for a few months and at my next check may ask if they can test for Lupus (mother had this undiagnosed for years) or anything else whilst they can. I often say my whole body hurts and I think I am mad .

[Yeswithasmile in reply to Smilykaf]

You are not mad Smilykaf. I used to shout at my kids ‘don’t touch me’. I sincerely hope that it isn’t Lupus. Your poor mum. I was checked for most things like that. All negative. Consoled myself with the fact that they can take years to diagnose but I now am sure the thyroid has a lot to answer for (as we all know) but especially muscle/joint pain. Maybe you need to check you levels?? Worth a though? x.

[Smilykaf in reply to Yeswithasmile]

I have been checked today for all apparently but not ferritin(not sure why)but I’llAsk the doctor when he calls me back.

It’s just a nice feeling the family have when checked for lupus when we can. Just reassured us ❤️

[Ziggy17]

I had terrible frozen shoulder and shin splints until I stated taking magnesium citrate - miraculous! Pain free after only a week or so. I’d had Hashimotos for about 15 years at that point. Good luck!

[HashiFedUp]

Yes! Years and Years of pain. I’m now on Celebrex - a Cox-2 inhibitor- which has given me my life back! With autoimmune thyroid disease / hashimoto’s, the immune system attacks tendons in particular, causes pain and inflammation around joints and in muscles. As well as trigger points. Sports massage (outside lockdown obviously!) is a very effective treatment. Also pilates. And Celebrex - but don’t accept Pregab or Gabipentin from your GP - they are disguising, addictive etc.

[Gilbo72 in reply to HashiFedUp]

I have really bad problems with tendons. They are all hurt in hips, elbows, and ankles. Never heal. Some burn, the muscles where they join are often tight and tender. Tested for every autoimmune thing going, only hashis is positive. Inflammation is not showing up in bloods or visually. GP is suggesting menopause, (gut says absolutely no, nothing to suggest that) I was thinking it’s low T3, I never go over 13% in range. What and how did you get Celebrex?!?

[Yeswithasmile in reply to Gilbo72]

Hi Gilbo72

Ouch!! 😞

It’s so debilitating isn’t it?! I had a referral to the pain clinic at local hospital (admittedly this was years ago) and gave me lidnocaine (spelling sorry) patches. Tens machine. Neither worked. Celebrex - sorry to say as this obviously is of great benefit to Hashifed up but this was no more effective for me that ibuprofen and that wasn’t much. Doctor gave me pregablin. This made me feel drunk. I literally found nothing helped.

I decided it was nerve pain. I also decided that I got into a spiral of being tense and guarding my joints by not moving as properly I as should and felt I was exacerbating the whole situation. I took cocodomol for a few months which brought my mood down and made less able to cope as well.

On the positive I found a chiropractor that helped when I really couldn’t move one day and would go every month for a maintenance appt. This helped with the extremes. Along with him knowing just by touch where I hurt. Big mental bonus when someone can physical tell where is painful and you’re not mad.

The t4 has been massive for me as it enables me to function now and I think that I can’t be alone in needing to get levels and vits spot on to get rid of this symptom completely. I am forever hopeful but am convinced it is thyroid 100%.

I am currently running at 33% for t3 and 52% t4 after a recent increase (t4 only) I have requested t3 and I think yours is very low. From what I read most people feel better way higher in the ranges. So maybe that is something you could look at?

I hope some of the above is relatable for you and that you can get some direction and feel better soon. I do feel your pain x.

[MY04zzz]

Only when undermedicated.I need T3 to be at least 60% through range and then pretty well of the niggly symptoms disappear including tendinitis in ankles, hips and shoulders.

[Yeswithasmile in reply to MY04zzz]

Can I ask... are you t4 or t3 or both? x.

[MY04zzz in reply to Yeswithasmile]

Hi - I was on 100mcg of T4 for over 5 years, and felt good - never had T3 though ever (nor was FT3 ever tested)

Then GP lowered dose to 75mcg as too low TSH - (should have argued against that reduction at time - but we learn!) and I started getting tendinitis as well as some of the other old symptoms.

Went onto this forum and ordered self testing from Medichecks which showed FT4 and FT3 below mid range like yours - so dose increase back to 100mcg recommended by this forum. GP agreed to this and FT4 went up to 20.1(12-22) and FT3 went up to 5.1(3.1-6.8). However I was also still getting slight plantar fascillitus (other tendon issues gone)

I have gone gluten free since November and it seems to have done the trick! - and I have no symptoms of hypo at all now.

I will be doing another Medichecks thyroid panel test in a few months so it may be that going gluten free just helped absorption to get that FT3 up a bit more.

I would say you definitely need to get your FT3 up - I would say start by upping T4 dose to get your FT4 up to top quarter of range, and then only consider adding T3 if FT3 has not risen to at least over half way through range if not higher. It’s just that I preferred to go down the route of trying to get FT3 up by going gluten free before taking the step of taking T3 .

[Yeswithasmile in reply to MY04zzz]

That is so interesting MY04zzz!! I’m so made up to read that and that you don’t have any hypo symptoms at all!! Such a positive post. 👏🏻👏🏻👏🏻 Thank you 😊

I am with you, I had wanted to go down the increasing vits etc to get t3 up. Getting t3 seems a nightmare whether fighting to get it on any sort of prescription or self medicating and I don’t hold out much hope from my request of it from my endo. However I raised my t4 by 25mg and now my tsh is only just in range and my t3 has only increase by 0.02. I knew I’d have to be awkward 🙄. I accept that I maybe able to help it but getting everything else improved but I just can’t imagine that doing that will make enough difference. So I thought I’d save time by asking for some t3. They can only say no.

So pleased to read your post and 👏🏻 for everything you’ve done. Hope for GF is ok and not to tricky for you x

[MY04zzz in reply to Yeswithasmile]

The Medichecks test was amazingly helpful - to make sure Vitamin levels were all optimal as well! I will continue to do this test once of twice a year!!I think as your T4 is only mid range I would try to get that upped by 25mcg again - my TSH is around or below bottom of range but if you have Hashis it doesn’t matter - it’s the FT4 and FT3 which matter.

It’s just convincing your GP that!!

One of the administrators on here may be able to help with info on that

Have you tried GF at all?

It might be something to consider after getting everything else optimal.

I find GF easy now - just a bit tricky at some restaurants

[Yeswithasmile in reply to MY04zzz]

Yes. The dreaded surpressed tsh. That what I’m going to be up against. I’ve had that a few years ago and it was all a drama. Obviously I didn’t know then what I know now and went along with the urgent phone call and subsequent reduction 🙄.

Here here on the private blood test front. It really does allow you to help yourself doesn’t it?

I may well go gluten free. There are so many advocates on this forum so definitely something to try I think. I can’t keep putting it off.

Thanks for you input. Just what I needed today x.

[MY04zzz in reply to Yeswithasmile]

Also - I can’t take TEVA - that gives me tendinitis too! I have to split an accord tablet

[Yeswithasmile in reply to MY04zzz]

I found taking teva was like not taking anything at all. I did think there may be something a miss with 100 mcg accord tablet recently too and posted on it but have now decided it’s my thyroid’s t3 and the lack of improvement I was anticipating was the actual cause. 🙄.

[Alanna012]

Yes with advanced undertreated Hashimotos you can feel muscle pain

You can have parathesia's: crawling, burning, itching, sudden sensation of cold water on skin, stabbing.

You can have hyperalgesia: Normal activity is painful: walking, picking things up, moving

allodynia: slight touch or a hug gives you pain I have this in my scalp, just touching it was sheer agony

Sometimes stress results in worse symptoms. Cortisol plays a part in the mediation of pain and inflammation and when undertreated cortisol is often too low or high.

[eghjm100]

I suffer a lot of pain has any one had experience with CBD oil it is supposed to be good for pain but I have not tried it yet.

[Because12]

Hi TopesI had a lot of muscle pain in my arms, hands, fingers and legs. This didn’t clear for me until I started Amour thyroid, private endo, after my GP wouldn’t increase my levo or try T3. Different for everyone though.

All the best,