I'm wondering whether back pain is a symptom of UAT/Hashimotos? I have had it for well over 10 years now (like my hashis), but it seems to be getting worse. I tried to book an appointment with a doctor but when I turned up today I found it was with a physio who just told me I had to live with the pain and he could send me to a pain clinic. I am 46 and get pain every single day. Walking or standing for any length of time makes it worse. The periods where it's more acute seem to be getting more frequent, and the last couple of times have left me having to crawl to my feet using furniture. I try to up my exercise levels (slowly) but every time I think I'm getting somewhere - usually about 3-4 weeks in, it triggers and I'm left recovering for 2-3 weeks before I start again. Really fed up and don't want to accept that this is it now for the rest of my life.
The pain is lower back, although I sporadically get sciatica type pains which go right down into my feet, and I have regular sore knees as well. I have had an active life, and have had a couple of nasty falls from horses, but nothing which has seemed to injure my back specifically.
Is it related to Hashis or UAT, or just something else to contend with?
Cheers,
Ellie
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EllsBells591
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What is your current dose & do you always get the same brand?
If your level of replacement is not sufficient this cause cause lots of hypothyroid symptoms & knock on issues with associated poor nutrients.
What does your doctor test, many look at TSH only.
For full thyroid function you need TSH, FT4 & FT3.
Levo only works well if folate, ferritin, B12 & vitamin D are optimal. Have these been tested?
If GP won’t test everything there are private options.
List of companies offering different options, some packages include thyroid function, key nutrients and thyroid Antibodies. Others basic function only. some also have discount codes available.
You order test online the kits arrives via post sample taken by finger prick (extra fee for private venous draw). Post back and results available online quite quickly.
Funnily enough I've just done one today with Thriva, but was in a bit of a muddle so did it after I took my levo 🤦♀️
I'm on 112.5mcg of Levo. Always the same brand.
I sporadically take the following supplements : B12, D, Mg, K, Zn, Se, Fe and C (when I remember), Betaine HCl, Omegas, Folate and Amino Acids (the last very rarely when I remember).
I was very low on Vit D and Ferratin before I started supplementing (27nmol/L and 17 ug/L respectively). My Anti-Thyroglobulin Abs were high until I went gluten free.
My last set of tests (Blue Horizon) were back in September when I was on 125mcg Levo and were as follows :
I am vegan. And gluten free. I supplement, but it's a bit hit and miss. I'll go through cycles of being really good with it and then getting fed up of taking so many pills and forgetting for a month or so.
Full labs and what I supplement with (on and off) are in my reply to purple nails.
Did you send off sample? If not you may be able to request another kit & you should need to arrange & pay for another test.
Lots fail to get sufficient blood & need to do this.
Your FT4 & FT3 look fairly good in range & stable. Is it just your TSH which dropped? Might show a drop in next test.
If like me you have a terrible memory and taking medication / supplements / hormone replacement is tricky…. There is a solution.
It’s often important to take things at the right time to ensure they are spaced out and consistently taken with sufficient spacing between eg replacement & supplements.
I now use a pill organiser for my medication & supplements & you can also set alarms eg on your phone or use a pill reminder app.
I choose an app which alarmed when pill were due & you had to tick off once taken. You got fun or interesting photo at end of day. I don’t use the app anymore, as memory better & in the habit of remembering.
Thank you. I do use a pill manager and the breakfast ones I do most days. I'm also much better with bedtime ones currently as they are there looking at me when I go to turn off my light. It's the lunch and dinner ones I struggle with. I'll look at a different reminder app - thank you.
I had back pain on and off for nearly 40 years....various treatments including from several chiropractors and at one stagefrom a cranial sacro therapist ( almost weekly for about 10 years!) helped only slightly
The pain eventually eased (but can still occasionally recur) when I was replaced with a therepeutic dose of T3.
I found (low thyroid pain) could be cyclical.
What I'm really getting at is, have you recently had a full thyroid test as PurpleNails described? It should point the way forward.
Suggest you test and post labs then we can advise....
Gosh, 40 years. That sounds awful I've been wanting to try T3 for a long time but doctors aren't interested in prescribing it. Labs are in my reply to purple nails.
I'll try again with the 125mcg if I can persuade the GP, and getting my supplementing back on track. I'm quite good with my breakfast ones, but generally forget lunch and dinner ones. 🤦♀️
I find hypothyroidism does cause / increase back pain. You could try a higher dose for a couple of weeks to see if it makes a substantial difference, if so take a couple of days' dose for the first two days so that you adjust quicker, and when you resume your normal dose skip a days' dose.
I have lower back pain / sciatica. I was given exercises by a physio which really help. I also found that how I sleep makes a massive difference, took me over a decade to find out! If I sleep on my LHS I get back pain which stays for days, on the RHS I'm fine. If I want to lay on my LHS I put my elbow out so that I don't rotate my upper body. I have some minor spinal damage (age?) and it seems the wrong position puts pressure on the nerve causing pain leading to inflammation leading to pain leading to ...
So, try experimenting with how you sleep, see if some positions are better than others, it could save a fortune in pain killers.
Thank you jimh111, I sleep on my stomach with one knee out. I can't sleep on my side as it hurts my hips too much. If I sleep on my back I get night terrors. 🤦♀️🙄 The back pain isn't worse in the morning. I decreased my dose as the results said my TSH was too low on 125mcg at 0.1
I too have had worsening lower back pain radiating down my right leg and I was given an MRI scan in December ‘21, which found bulging discs at L3-4, L4-5 and at L5-S1, as well as degenerative osteoarthritis on all of those vertebrae. At that time I was told there was no nerve involvement, but it has degenerated further now and there is now! It is the most miserable pain I have ever known in my life and I gave birth to 4 kids! I was prescribed Amitriptyline yesterday for it’s neurological effects, so I’m hoping that will work for me.
My thyroid meds are controlled by me, under the supervision of an endo, and they are optimal for me at just 25mcg T4 and 50mcg T3 (split into 2 doses) per day.
I would strongly suggest you ask for an MRI scan to rule out any degenerative or other damage to your back before embarking on unnecessary adjustments in your thyroid meds if you feel well on them.
Thank you, and I'm sorry to hear you have been suffering so much, fingers crossed the Amitriptyline works for you. I am looking into MRIs after all your comments, thank you.
My theory, with help from an excellent sports physio working on strengthening and sorting out pain and disability caused by muscle fibres ‘gluing’ themselves together (mucin?) of e.g. frozen shoulders, hip pain, back in spasm/unable to walk, sit, lie down etc is that my muscles are a strong feature of my particular ‘brand’ of hypothyroidism. My physio keeps me pretty good or at least looking fairly normal and mostly I do not need to crawl around any more. I go privately because the NHS just cannot provide the correct level of support for me. Long waiting times in agony waiting for appointments and then I get only two. It’s been a huge investment but it’s the only way I can get suitable help. Weak (and often spasming) muscles just can’t do the job they are designed for. Proximal muscles (any muscles holding the body upright basically) are often where the exhausted muscles are first felt. The sacroiliac region becomes weak (noticed first when pregnant) and is particularly the place where pains can radiate just about anywhere. Just lying in bed can set it off. It’s my theory that this is the connection to some arthritis forming on bones. The muscles just can’t hold the body in the way that is intended/designed and in the end can lead to osteoarthritis. The joints start rubbing together because the muscles and tendons cannot keep them apart as they are designed to and are not doing their jobs. It’s a form of wear and tear often accompanied by inflammation. Both types of arthritis can be related to hypothyroidism. One through this problem and one through the autoimmune route. From what I read, most of this is entirely preventable when thyroid hormones are correct and stable as long as the damage is addressed before it can become permanent. I know when I briefly took T3 this was temporarily improved. I am hoping my ignorance of dosage can be overcome on another attempt and my muscle pains will be gone. It seems to be yet another area of hypothyroidism that doctors are unaware of and attempt to put it down to something else.
Curiously as others have mentioned your hormones look ok. DippyDame is a fount of knowledge on thyroid hormone resistance and has good references.
Thank you for your comment - there is a lot to think about in there! I've had two frozen shoulders, one of which I had to have operated on and where I had some nerve issues after in my arm. My levels in September were certainly the best they've been, and my antibodies are heading the right way too which is great. It may all be unrelated - I'd just like to get to the bottom of it and be more comfortable
I think physios come in for a lot of stick. I found a good rather elderly NHS one but was never able to see her again. At least privately I get to see the same one I trust. A friend of mine had her frozen shoulder ‘fixed’ by surgery and had nerve damage. Thankfully it has improved over time for her but not back to 100% yet. Nerve issues come and go for me “spaghetti arms” I get when damaged (temporary thankfully) and when my levo is too high (also temporary too).
Re. the back pain EllsBells , don't give up hope , you may be able to sort it out .
i had long term issues with very nasty pain in various bits of my lower back inc. nerve pains down legs, mid back tension with horrible pain under shoulder blades that no one could fix . neck/ shoulder tension limiting neck movement and making reversing vehicles v. difficult , this went on intermittently from age 26 - 50.... about once a year it would go wrong if i used it even slightly incorrectly ,and would then stay wrong for months at a time ...
needed to see osteopath privately about once every 18mths for 5/6 visits each time , also used acupuncture sometimes ... lots of NHS physio over the yrs inc. traction to neck a few times ...lots of painkillers ... diazepam was needed to loosen things up on a few occasions .
I thought 'that was me' for life ........ now age 56 and i haven't had any issues for the last 4/5 yrs because a young NHS physio managed to isolate the one sided muscle weakness that was causing/ worsening to the issue , and taught me an exercise to strengthen /maintain / balance the specific core muscles supporting my sacro-iliac area , and this exercise now fixes it within minutes whenever the issue pops back up ... Amazing ... just a shame nobody found it when i was 30 not 50 ..... ostoepaths etc are good at fixing stuff, but not so keen on teaching people how to fix themselves.
like you i had no 'specific' back injury , but had clobbered it very heavily a couple of times in my youth ... knee to back of car during motorbike crash (not paying attention !) .. and jumping 75 foot into water which smacked my bum v. hard (showing off! ) with hindsight .. both of these clobbered my sacroiliac very heavily ,, and the first one was a one sided clobber.
So definitely keep searching for knowledgeable people who will look in detail at your function / movement/ small core muscle strength ... perhaps younger ones, (recently trained in colleges for treating sport injuries in expensive footballers etc ) may be a good place to look.
After yrs of having to sleep in exactly the same position as you , i can now sleep in any old position with any old pillow, which would have been unthinkable previously ....and i haven't needed a painkiller for yrs.
Personally i don't think my hypothyroidism (or dose of thyroid hormone) had any relevance to this.. my back was an ongoing problem from age 26 ... i became hypo age 32 .... and 'dodgy backs' do seem to run in my family even though no one else is hypo.(my mum and both my kids have had debilitating back pain issues without any significant 'injury' to blame it on).
Somewhere on here i wrote a reply which explains in detail the specific exercise i use .. if i can find it again i will add a link . but obviously it is unlikely you have exactly the same issue ... however i would say that the sacroiliac region (and importantly, strengthening the core muscles that support it) is a very good place for anyone with vague/ undiagnosable back issues to start looking for their own personal fix .
Wow, that's really interesting! I've steered clear of physios in the past as they've never seemed to make any difference, but maybe I need try again. So many things to think about when you don't know what the actual problem is isn't there? The program that the osteo gave me is all about strengthening these areas so I'm definitely going to continue with that. Thank you so much for your reply.
I'm sorry to hear about your ongoing back pain, EllsBells591. You've gotten some helpful comments here. I would never dissuade anyone from optimising thyroid hormones or from having scans and assessments to dignose and treat pain. To the contrary. If you have pain that is sending you to your knees I hope you're able to have it medically investigated promptly. But every time I hear about people who have had persistent pain for years, decades (!), I want to suggest another factor to consider, especially when the aforementioned methods don't help.
There's been so much learned about chronic pain from neuroscience research. Even when pain has a specific physical cause, if it persists for months or more, the nervous system can become sensitised and actually intensify the experience of pain. I think a lot of people have begun to learn about this and more clinicians are introducing patients to the concept of central sensitisation. But for anyone interested, a very good, very basic and entertaining introduction to the topic is Lorimer Moseley's video, why things hurt. (YouTube) He's a great resource on pain but there are loads of others.
Thank you wellness1. I watched the video and found it really interesting, but I do agree with one of the commenters that it appears to be aimed towards acute pain as opposed to chronic pain. I can't remember if it was in the video or in the comments but someone said that you need to keep pushing through the pain to show the body that it doesn't need to hurt for that. Mine should have gone away ages ago if that was the case. I'd be interested in reading more about it though.
I haven't watched that one in a while, but I think of it as a good general intro to the complexity of how we experience pain. But definitely he's an expert (many others, too) in the big and complicated topic of chronic pain. There are other videos he's done that elaborate as well as his book, Explain Pain. There's also a very good book by an NHS pain consultant, Dr. Deepak Ranvindran, The Pain-Free Mindset. Loads of things out there, including Apps. But mainly I just wanted to suggest that the neuroscience shows the longer we're in pain, the better the brain becomes at experiencing pain. As I said, I'm all for pain being medically investigated and appropriate, conventional treatments tried. And forum members have attested to the influence of thyroid hormone levels on pain. All very important. But how we experience pain can go well beyond 'issues in the tissues'. Think of phantom limb pain, as one example.
I think for people experiencing chronic pain, trying to incorporate movement, with all its benefits, in an appropriate way is more the emphasis, rather than 'push through the pain'. But it's a complex topic and has to be specific to the individual, for sure. I wish you the best.
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I've been wanting to try T3 for a long time but doctors aren't interested in prescribing it. Labs are in my reply to purple nails.
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