My legs feel like they won't work, is this 'normal' for a hypothyroid sufferer??

Hi everyone

Hope you are all doing ok. I was diagnosed hypothyroid in May this year and have had nearly every symptom going for a few years leading up to this! I'm now classed as normal by my GP after many blood tests and several increases of levothyroxin. Normal may be their diagnosis but not sure it's mine! Anyway, with all the useful information on this sit and with the help of you wonderful people I am working on how to make sure I feel at my best.

The reason for this post is I am now experiencing painful feet both soles and heels and heavy achey legs. I work full time and stand all day but by the end of the day, I feel crippled and struggle to walk. When i rest my legs literally throb. Last night I had a long bath when I got home to try and ease my legs but even after this my legs felt like they didn't want to work for me anymore :-( I hate this condition but I am not going to let it get the better of me.

Does anyone else suffer like this and if so, what do you do to help yourself? xx

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  • Sorry you've had no replies, I am posting to push this back onto Latest Activity...

    L

    x

  • Thanks Louise, bless you xx

  • Hi,

    I too have the same problem....it started with weak legs 8 years ago before I was diagnosed as being hypo.

    Since then its got gradually worse. I remember (and still do) waking up from bed and having this aching pain from top to bottom on my legs. I couldn't play sports to my best because of this.

    Recently, they have got worse. I can hardly walk at times.

    It has to be hypo related after all my other tests are ok. But my suggestion is also something to do with stress because the days where for some reason I'm v v v happy I don't feel it or it could be I just forget it hurts.

    My GP help differentiate that it's not pain but it's aches.

    Wearing tight thermal long johns under you trousers may help some days (i know weird) and muscle heat rubs give relief but for curing the problem it must be the hypo stuff. Get yourself a bone profile...vitamin D just to be sure.

    I'd love to know your blood results because your sounds just like mine...

  • This is my worst troublesome symptom. Achey legs, throbbing when I sit still, painful calves, heavy feet, like dead weights. I am on T 3 only and would be fine if it were not for this. Oh, I forgot the very sparse hair. Strangely I am sometimes fine, so do not know what to blame. I also always take B12, Folate, iron, B complex, Vit C, zinc and then one or two other things when I remember. Any one any other ideas for the three of us? Thanks!

  • Hi there

    Thanks for replying both of you, it's good to know I'm not alone. I'm afraid I don't know my blood results in terms of vit D, ferritin etc as I've only just realised how important it is to have this info to hand. I do know i have a low iron count and on my last visit to the GP she suggested I take a multi vitamin plus iron which I have been doing when I remember (this sounds terrible but I know I should leave 4 hours from taking my thyroid meds and not take on an empty stomach therefore sometimes it's not convenient when I remember and then I forget!) On my next visit to the GP I will make sure my bloods are tested for iron etc just to see if this may be the cause.

    One thing I so know is that my period was this week and I wonder if this has any impact. I know I was having palpitations in the lead up to my period plus night sweats whereas now my period has finished these symptoms have gone away. Today, I stood on my feet all day and although my feet are painful, my legs aren't as painful/ache. Also, today was a fairly stress free day, could this make a difference? And, I've not eaten wheat for a week??? Who knows! Does any of this ring true with either of you? x

  • Did he say low iron? Anyway iron is in the mix, so check out folate, feritin and B12 which may help - and I definitely found Vit D helped me (well apart from it seeming to help have periods again - not sure if that's a good thing 'tho - I'd much prefer not to have them!) I just got myself a B12 test which was low and hoping supplements will sort out my lead (done a marathon at night) legs. J x

  • Yes, low iron, does this make sense? What do I have to ask for to be tested for everything you mention? Do I have to specify I wish to be tested for each thing? Many thanks x

  • are you having supplements for the low iron? I hope so, anaemia is not something to be ignored, and you can tell your GP that! Us roidies are prone to being low in minerals and vitamins - sadly GPs prefer not to treat them in favour of other drugs - but sometimes we have to go back to basics and sorting these helps Thyroid meds work. Perhaps the main TUK site can give you some insight (have a read) - just ask your GP J x

    thyroiduk.org.uk/tuk/treatm...

  • Thank you for this link - it's an eye opener! Shall I just buy the supplements and start taking them to see if I start to feel any better or do you think I should go back to the doc and ask for tests? I am taking an over the counter multivitamin plus iron tablet currently x

  • Get tested, definitely get tested. Don't be fobbed off with just the Full Blood Count, make sure they do a full iron panel which may include - Serum Iron, Transferrin, Total Iron Binding Capacity (TIBC), Unsaturated Iron Binding Capacity (UIBC), and Serum Ferritin:

    labtestsonline.org.uk/under...

    Other tests to ask for are Serum B12, Folate and Vitamin D, as mentioned by the other responders.

    Make sure you get copies of all the results with lab ranges, and post them up on here for further advice if you're not sure what they mean.

    Did the GP prescribe the iron tablets, or recommend which ones to take?

    Hampster

  • She told me take any multi vitamin that includes iron, that was it. No prescription for these. Thanks or your advice on what to get tested for. I am supposed to go back in Feb for my thyroid test but I think I will have to go back soon as I could barely walk on my left heel this morning

  • The words "useless" and "GP" spring to mind, in the same sentence. I wouldn't have thought that a multi-vit would have even remotely enough iron in it to correct a deficiency.

    Once you know your levels post a separate question about iron and you'll get loads of recommendations about what to take, assuming the GP doesn't prescribe you anything. I've read that Feramax is very good at getting levels up if deficient, you can buy it on ebay as not generally available in the UK. Some info here:

    feramax.com/feramax150docto...

    For "low normal" levels a lot of people just use Spatone (available Boots, Tesco etc).

    Best discuss with your doctor, pin them down a bit more about what and how much you need to take. Too much iron is obviously as bad as too little.

    Heel pain could be plantar fasciitis, common in both hypothyroidism and B12 deficiency.

  • The first symptom that originally took me to the GP (and initially resulted in a diagnosis of fibromyalgia) was extremely painful feet. I was eventually diagnosed with Hashimito's Thyroiditis and often my legs feel so heavy and achey it's a struggle to get them moving. Giving up gluten is definitely a good idea so is getting tested for vits D and B12 levels. Stay strong and determined!

  • Hi confused, thanks for replying. Come to think of it, I've had a painful left foot for years now, I just thought I was getting old or I had damaged a tendon! I think I need to get my vitamin and b12 levels tested x

  • I have found that taking a good selenium supplement really helps with the feet and leg problems. It's very odd that on some days we're fine, on others can barely walk. I take Pharma Nord Bio-Selenium+Zinc, always free pp on everything. pharmanord.co.uk

  • My legs have been very painful too. They feel so very heavy and are sore to the touch. It has been one of my worst symptoms. They actually feel like they dont belong to me when I start to walk. My GP now thinks it is fibromyalgia but I wonder if it is thyroid related.

  • This is a link re fibro:-

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

  • Thanks shaws for the link. I have been reading quite a bit already about the connection between fibro and thyroid. I have been on Erfa and hoped that the T3 element in Erfa might help me. However my private doc frightened me into lowering my dose of NDT (got up to 2 grains) and he said my TSH was suppressed and he thought I was over medicated. My TSH was 0.04 my t4 and t3 were both in range so dont know what he was talking about.The fibro did not improve when i was on 2 grains. I have since been to my GP to see if T3 only would help my thyroid and fibro. He asked me to do another blood test and will talk to the endo at the local hospital .If they refuse I will try it for myself (hate self medicating, makes me feel vunerable but feel I have no choice). If that fails will try Armour and build back up to 2 grains.

  • If you also go to the date January 25, 2002 on this link you will see how your metabolism can be mucked up by adjusting

    unnecessarily. My TSH was 0.01 and no-one suggested reducing meds.

    For me, Naturethroid was better than Erfa but it is an individual thing to find out what's better.

  • After being on levo for around 8 weeks every muscle and joint ached, could only shuffle around, couldn't raise arms or step on pavement.

    With a change to another levothyroxine, it all disappeared. There are now fewer makes on the market but it could have been a sensitivity to fillers/binders.

  • Hi D. Muscle weakness with aches (deadness) are charcteristic of hypothyroidism - but i can't say precisely why.

    I had many years of sore muscles and joint aches, but not the painful soles of the feet. Even just raising my arms in the shower to wash my hair caused aches across my shoulders, while my legs as you say felt dead - achey and no spring in my step.

    Working on the computer, or sleeping wrongly frequently triggered neck muscle pain and headaches.

    Hedge trimming (which i had no choice but to do) was an enormous problem. My arms would get immediately sore and seize up after maybe 20min - and need several days to recover. So anything like that had to be done with gritted teeth and in small increments.

    My breathing was poor too, walking more than fairly short distances at a moderate pace would cause breathlessness, and then sweats as well as sore legs.

    It's actually quite hard to eliminate i found, but it did eventually happen. Despite some years of quite decent replacement, trying all sorts of fixes and feeling otherwise not so bad it didn't clear until recently - with a further increase in the proportion of T3 (which didn't do it alone), and after getting my (high) cortisol levels under better control.

    Reducing the large number of blood pressure pills i had to take as the blood pressure (hopefully - it's early days) came back under control (still some way to go) has been the most recent (and not insigificant) step - walking and working have started to feel pretty normal. (for a relatively unfit 58 years)

    Vitamin D could possibly have been part of it too, but seems less likely - i was low (again) and started a course of D pearls around the same time as adjusting the T3.

    ian

  • Thanks Vajra, what you have written rings true in many areas. I get a dreadful headache if I sit/use a computer in the wrong position, I guess any normal person would say so do they but this doesn't feel normal. My back aches if I don't sit in the right position. I did some topiary on one of my trees 2 weeks ago, I still haven't recovered. My thumb is numb, my tendon in my arm hurts as does my elbow. Carpal tunnel?? Who knows!

  • Thank you for doing this post. I also have big problems with my legs, very painful, especially the lower legs/feet. It helps a little if I raise them when sitting, but they often keep me awake at night as they are so 'achy'. If I walk more than a short distance they turn to jelly, then I suffer later in a big way with the severe aching.

    I can so relate to the post vajra made about cutting the hedge! That literally kills me to the extent that my hedges have not been cut in two years, and before then once in a blue moon.

    I did not suspect this was a Hypothyroid symptom, so maybe another piece of the puzzle has fallen into place.

    Many thanks, and best wishes to all.

  • I wasnt sure it could by a thyroid issue either. It's been interesting to hear everyone's experiences. I have bad circulation and thought it could be that but I also wonder whether the bad circulation has anything to do with thyroid? Who knows eh??!

  • Thank you everyone for your replies. It's so comforting to come on here and realise I am not alone.

    I am feeling down today and fed up with having to do my own research into why I am not feeling as I should. I'm an interior designer/shop owner, if I had of wanted to be a doctor, I would have studied medicine. Annoyed that I have to spend my valuable spare time having to research thyroid issues because the stupid doctors treat you as a "number" and not as a human being.

    In my past (I am 44) I could count on one hand the amount of times I saw a doctor, it was rare. Over the last year, I've been there more times than I've visited close relations!, surely stupid doctors should realise I'm not right or do they just think I'm a hypochondriac?

    I know I'm not alone on here and I feel bad moaning as some people are clearly worse than me but I've been silently crying today. I have a wonderful husband who so desperately wants me to feel better again but I'm fed up with talking about hypothyroidism. I'm fed up with carrying it around every day. I'm fed up with not knowing if today is going to be a good day when I wake up. I'm fed up of making sure people I haven't seen for a few years know I have an under active thyroid because I want them to understand why I am now fat whereas normally I am a very private person who never talks about my problems. I'm fed up of thinking about what I said to whoever and whether I offended them (anxiety). The list goes on so I shut the bathroom door and have a cry, silently feeling sorry for myself :-(

    Can I pay privately to see someone? I don't care what it costs, I will take out a loan if I have to, I just want to see someone who specialises in this, someone who knows what tests to do and just gets on with it so I can get on with my life. I am with BUPA anyway, can I just make an appointment with someone or do I have to be referred? I don't want to be referred, I just want to take this on by myself, pay whatever it costs to feel normal again.

  • I know how frustrating it is, for a private consultation TUK have a list of helpful doctors,

    email louise.warvill@thyroiduk.org for the list. J x

  • This isn't to say that there are not some very capable (and not necessarily medical - often naturopathic and the like) practitioners out there, but it's possible to throw a lot of money at very fancy sounding doctors and get nowhere. (or a lot worse)

    The problem to my mind is so often hyper bureaucracy - the way the T4/TSH dogma and other ideology driven views on treatment, bureaucratically imposed cost targets and other restrictions and targets, profit, insistence on one size fits all approaches, and fear of legal or professional consequences have almost eliminated the practical ability to treat patients based on symptoms, and reduced most doctors (other than a few brave ones) to paralysis/learned helplessness. True competence/healing and care for the patient come in at the end of a very long list.

    It's hard not to conclude that those of us in this space have been handed the task of taking responsibility for our own life path in extra difficult circumstances - for as i've often said walking between the raindrops. That's extracting from this and that doctor or source of services what we need, but never ever if we can manage it handing over all responsibility for ourselves.

    That can mean setting aside what can be incredibly intense family and social conditioning, doing a lot of work when we're actually not fit, and walking a very narrow line between emotional and other forms of foolishness, and a reactionary failure to trust anybody (because we always come to a point where we're required to place trust in something or other) - and (carefully and methodically) trusting in ourselves and our own intuitive and rational knowing.

    The starting point for me anyway was acceptance of the reality of my situation and the restrictions it brought (most especially of the need if a quick fix proves impossible to restructure life to get the stress off, and the realisation that i had to show compassion for myself), acceptance of the chronically poor management of thyroid and metabolic illness by professionals that is the norm, and acceptance that nobody but myself was going to dig me out of the hole.

    There's a rythm that can develop. Study for a while, target something, spend time and money getting to try it, observe and absorb the result. Fail, or partially succeed. Fall into despondency, or realise that no - there's more to come. Then have inspiration struggle back into life, and go again. With associated illnesses cropping up at intervals too - which cause suffering and trouble, but which tend to point to what's going on too.

    It proved a very close run thing (i developed thyroid cancer and all sorts of nastiness, and lost my career - and who knows what the future holds), but between a nature that was that way oriented and support from my own family (my birth family pretty much marginalised me over my failure to keep on achieving, never conceded the reality and by continuous bad mouthing and criticism caused enormous hassle until age left them unable to do so)

    I seem more than 20 years later to have got most of the way there - but despite years of pleading with doctors and providing briefing material I was never ever diagnosed as hypothyroid - despite an enormously enlarged thyroid, every hypo symptom imaginable, and advanced auto immune thyroid disease.

    Which is in one sense an awful prospect, and in another wonderful. Your experience makes you what you are.

    That's not to say that it has to take 20 years - there's much more information about now and with research, the right mindset, the absolute determination to keep moving to new practitioners/forging relationships with those of the right mindset/trying the angles that make sense the prospects of a fix are pretty good. It gets slower/harder if the secondary issues are permitted to progress too far - so its important to nip it in the bud.

    It's terrible to have to say it, but it seems likely that if the above bureaucratic constraints were not in place and doctors and patients were free to act in a common sense manner (treat based on symptoms and lab tests, emphasise nipping problems in the bud before they become chronic, trial stuff where appropriate, put the time in, change tack where needed, work co-operatively with the patient etc) then it seems likely that most cases could be sorted pretty quickly.

    That's not to say that some proportion of cases don't involve underlying disease and/or inherited or other chronic problems that are much less treatable.

    One pity in the current mess seems to me to be that most doctor patient relationships are from the start quite adversarial, authoritarian and fearful in nature - or else hopelessly idealistic...

    ian

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