18 months ago after an operation I was given anti bios as wound looked like might be infected. These I took for two weeks. Felt very well better than had years. Then I had severe pain head and severe depressed mood shuffling along trying walk . Holding on furniture and walls unable get across the room . Bought a stick and mobility scooter as was virtually housebound very upsetting esp as Drs don't seem know why . Bit arthritis in knee was one suggestion I couldn't lift my feet to do large steps. And very off balance. . Needed help with everything . I am just feeling solid on my legs whereas before I was wobbly and felt legs were like jelly. .. It's hard to believe this could be thyroid related but my gp said oh your walking may come back. So he hadn't investigated it any further. . I have been told by chest clinic specialist that yes thyroid can affect your hip and back and mobility. Yet Drs laugh at that suggestion .or grunt. . Am I the only one feeling like this. X
Have many hypothyroid patients had walking abi... - Thyroid UK
Have many hypothyroid patients had walking ability affected
not hypo but when Carbimazole sent me nearer hypo I was struggling with balance, and pains when walking, like weird shin pains that I’d not really had before and feet (bones in my feet) aches so bad … I imagine if I were hypo actually hypo I’d really struggle to walk 😞
Definitely had issues with walking, balance etc. This is mostly better now but returns when changing dosage etc of thyroid medication. I am now aware and plan for that when changing dosage of meds.
Before diagnosis I was down to one pair of shoes I seemed to be able to wear. Three years later I can wear lots of different shoes. Sounds a bit mad doesn’t it? My feet seem to have got smaller again; I was not aware of them being puffy or anything, although suffered that ‘thing’ to do with the arches in my feet for years also. That seems to have gone.
Still got hip pain ………..
All filed under weird hypo symptoms.
Absolutely, apparently you can get thyroid neuropathy, my legs have been really sore and painful and getting thinner and thinner. It's been so bad I thought I might even loose the ability to walk. I have 2 little dogs who I have to walk every day but I'm so exhausted by it it's often the only thing I can manage. It often feels that my legs are like lead and that I'm trying to walk up a mountain. Also foot pain, pins and needles and balance problems.
I've just upped my medication and things may be easing up a bit but I'm not sure yet. Doctors as always are useless so I'm trying to figure it out by myself.
I'm just the same, legs like lead, (unfortunately, not getting thinner) two big dogs which absolutely exhaust me, foot pain, nerves in toes, right on the ends, worse at night when in bed, doctor said yesterday it is Peripheral Neuropathy. I watched Dr Eric Berg on youtube, he described this exactly and suggests B1 benfotiamine, which I am going to source.
It's madness isn't it? I think I have Plantar Fasciitis as well as the Neuropathy thing going on as well. Wretched thyroid at the bottom of it all I'm absolutely certain, when will they do some proper research into it?
Thanks for replying. I also have plantar fasciitis I believe heel hurts sore. And that started just as I was trying walk in the post office . November 2023. .not changed since . Any mention of it at Drs surgery has never been investigated. Just a prod to check there's feeling . I know that is also thyroid related . That's another reason I felt maybe I did need take thyroxine again tho I really didn't want to . Hard to see the benefits of going through all this but this time I did feel unwell before I started back on thyroxine. .Just don't understand why have to go through years of misery to get back to where I was before . Thanks your story helps. X
Honestly, it's unbelievable isn't it? after all these years and lots of thyroid support groups nothing has changed for the better and I believe it's all got worse. The plantar fasciitis on top of neuropathy is the final straw for me. My symptoms are systematic (that's another word for saying doctors just write you off in my experience)
I'm really kicking myself for not realising my thyroid is at the bottom of all this, but in my defence doctors telling you it isn't makes you doubt yourself and the symptoms creep upon you so insidiously . Where is all the help for NDT? where are the next generation of doctors like the late Dr Skinner?
I've just ordered Janie Bowthorpe’s books and hope to find some in depth information to start the journey yet again and I need to get my immune system under control. Never again will I expect the No Help Service or allow them to interfere with my thyroid. I feel stupid because I've had thyroid problems since I was a child, I should have known better than to let it get to this point, I really do need to source some Armour though.
Really hope you are feeling better back on meds but it does take a long time to get the balance right, have you thought about seeing a physio? this plantar fasciitis is a nasty pain and just what we don't need, from the little I know it's supposed to go away but it's not showing any signs of that yet!
What's your B12 levels like? I became hypothyroid after radioiodine treatment for overactive thyroid and at some time became deficient in B12. B12 deficiency symptoms similar to what you post.
Yes you have to be your own advocate. You know Best what you feel. No one else. And I hate to break the tragic news but neither do the Dr's know how and what you feel. Most Dr's are not good listeners. I learned with my Thyroid journey to trust what I feel and to be Pro Active and Advocate for myself. We are Not One Size Fits All.
So true, I certainly won't be trusting a doctor again.
Not all Dr's practice the same. But many Dr's I found that understand very little about Thyroids.
Agreed but I've got 60 years of experience with various doctors, endocrinologists have been the worst. I did have a good GP but he wouldn't prescribe NDT but would do proper tests. Sadly he has retired and I'm a bit adrift.
I'm so very sorry that you suffered for such a long time. It's awful.I hope you get sorted out and feel your very Best.
Just a thought anaesthetic can reduce b12 levels, may be worth checking
Thanks. I felt myself that I wanted to keep feeling well as I did after operation. And was thinking I hope this lasts. Then the anti bios I was given seemed to be the problem. Day before the head pain I was fine no pain no thyroid related things then next day I couldn't walk without holding onto things . Very scary a trip to a and e and Dr there just said you don't fit the criteria to check things as you managed to walk in .if in wheelchair lost control bowels and rest then you would be scanned. . Go back to your gp. And ask for spine scan as they couldn't do it. . Being left with no explanation why has been the worst. I had to move Drs as that spine scan never happened. They wouldn't do it. And a phone call to explain why took 12 weeks to happen. By then I decided to change Drs. I had been there 42 years. Not lot better at new Drs tb h but think thyroid illness must be such complicated subject . It's hard finding someone who knows. X
When I was hypo I had balance issues and leg muscles that would randomly give out. I was told it had nothing to do with thyroid and, yes, I was also ridiculed by several doctors (including specialists) when mentioning the possible connection. I broke my wrist and my arm, cut my forehead open and basically could not trust my legs at all to not suddenly fold away beneath me. I was falling all over the place and am lucky that nothing worse happened. Another thing that happened was that when I changed direction, like going around a corner, my body would have a hard time following. It felt like it wanted to continue going straight. This often took me off balance and I would either bang into the wall or had to hold on to something. It was quite disorienting. Since my thyroid hormones are well taken care of, I have not fallen once and it has been 4 years now, whereas before falling was a weekly event.
Trust Your Gut Feelings. They never serve you wrong. I went through years not feeling well and Dr's kept telling me there is nothing wrong. They were so Wrong. I ended having to have TT for papilary cancer. Who do You Trust ? Yourself or The Dr's? It was a Great lesson for me.
Sorry you are having problems, but somehow glad to read others are having the same issues as me and now hoping they might start getting better when my dose increases. The feet/leg pain is one of the things most getting me down about being hypo, because it is so basic and so debilitating. I feel functionally disabled by it. I used to run and be really active, now just walking to the tube for work will lead to days of hobbling about. I’m limited to a single pair of Hoka shoes I can tolerate, and have to hold on the wall and bannisters to get down stairs on the morning. On left foot, the plantar plate tore 3 years ago and hasn’t mended well yet, now the other foot is going, so I can feel the bone uncomfortably on the ground and that uncomfortable “pebble in shoe” feeling. And the sore bones everywhere. It’s making me feel 95 and I’m only mid-50’s :(((
When my T3 runs low sometimes I have even been shuffling around not lifting my legs.
Pains also turn up in odd places where I had injuries, some forty years ago without pains for forty years.
Right knee from 1975. Gallbaldder but I have none. Left ankle which I broke in 1979 and had no pain for forty odd years, until I had my Thyroid removed in 2015.
It was only then that when running low on NDT i.e. T3 I started with these odd (long forgotten pains)
Balance yes, yes, yes when taking a new batch of NDT after only 40 days I started falling down
when I tested my FT3 was down from 6.06 to just 2.76s this was back in 2022.
I don't know if it has to do with hypo, but I also experience a lot of hip and pelvis pain. Very bad shin pain, sometimes not able to put my foot flat on the ground. Sometimes like electric shocks in my ankle/shin and then my leg not holding me, it just turns to jelly. Everything has been examined. Beside some age deterioration and arthrosis there seems to be "nothing wrong". I'm now experimenting with custom orthopedic soles but I'm already on my 2nd pair because the 1st pair caused pelvic issues (250 euros per pair!).
And I also have almost no shoes I can wear anymore. Besides having terribly narrow feet it seems that they never fit.
Lead legs: yes. Dizzyness: yes. Having to hold myself when going down stairs: yes.
Sounds so much like how I have been. Thank you so much for helping x.
no your not the only one I’m afraid,my walking has got very bad since dr wrote and told me she was cutting my thyroxine by 25 , I have had bad hips for a while and back but they seem to have got worse just lately trying to do anything is terrible as have to keep sitting down I’m up and down like a yo-yo , hope you get sorted out soon as it’s very upsetting really.
Thank you all for sharing your experiences. I did actually buy a mobility scooter after this happened after my operation. I had been struggling walking before that just needed hold on hubby arm of walking around any distance I had been see Drs about why and was sent to a physio and podiatrist nhs. A long wait but they just put it down to retirement and course in their view everyone sits around all day which I didn't I hadn't mentioned my thyroid being underactive as didn't think it was relevant. I hadn't treated it for over 10 years as I spent 7 years of misery on thyroxine before so I had to come off it. A few years later foot pain started and struggled walking. When I was at work one day my right leg just wouldn't move had spend day saying sorry I can't walk. . It got better. But pain in my foot and felt like couldn't put foot flat to floor right side .so hobbled . The podiatrist checked my foot swelling ball foot and said it was general inflammation . I think in hindsight now I am taking thyroxine again that if thyroid controls inflammation it may have started like that. After the operation on gall bladder ileus. I felt best I have for years well and getting on plans I felt I had my life back I wasn't taking any thyroid medication did I want to. Drs were saying they couldn't operate on me unless my thyroid was sorted which also became very upsetting as I never had operation before or been unwell with anything serious . It was after this head pain came on ten weeks after the operation June 2022 and pain hand that I saw gp and he said you need to go back on thyroxine.I was worried about that but as felt unwell now and couldn't walk had no choice. I said oh but you're not doing anything about my walking problem. He said yes but it might come back again once your thyroid treated .so I was left to find out it's been a year since I started on them. January this year my legs started feeling stable again and can walk across room not holding on walls and furniture. We used to go hiking up the lake district 10-12 Mile walks now hubby has to go walking from home alone which is upsetting . I love walking and my dream is that I can get walking ability back I never used the mobility scooter and sold it again. As I think if don't use muscles it won't get better but just a trip to shop was exhausting as others said takes a lot of effort to just walk with a trolley. I use a stick but my balance has improved just can't do more than twenty yards without it. . I did have the gp a diff one laugh at the suggestion thyroid can do that. But I have read about it online and chest specialist told me that they were taught that at med school seems like the younger Drs remember things the older ones can't so they laugh at it .or say doesn't happen. It affects your spine and hips was what I was told. Am sorry to hear so many have had the same. I really think Drs need to be retrained as not helping us and it is very upsetting when mobility affected and nothing shows up on scans to account for it. .nothing bad enough anyway. Hoping the increase may just help me get mobile again it's hard as there's little support without thyroid UK I dread think what would be like . I try to stick with it in hope Drs I don't trust this opinion at all. Sadly. Hope you all improve. Xxx
thanks for getting back to me,I hope you start to improve more , my
Daughter in law has said to me about getting a mobility scooter but I think once I’ve done that that’s the end . Good luck x
Yes I did get a nice little virtually new one cheap locally but resold it tried it couple times of on walk family but felt completely out of things .even more depressed .I thought same too muscles have to be used or won't be walking at all . If I had spine injury or severe arthritis maybe I would have to and adjust to it but unless someone can find a reason struggling walking I am trying to walk best I can . X
Thank you. I am glad to hear you have similar things going on. Hips and back are supposed to be thyroid related and walking affected. . I was so bad standing and had to sit to iron Or bake anything it was so upsetting . Then I worry about lack of exercise and try to see the benefits of taking thyroxine to help your heart health when now can't walk and exercise 🤔 surely I am in worse state now . But I did try to carry on attempting walk precarious on my.legs and exhausting I used a walking stick. Never ever needed one. Physio said he couldn't see any reason why I couldn't walk leg strength was fine . Just felt that I was a mystery to medical science And left like it. Maybe had I been referred to specialist they might have known. But have seen two diff ones many years ago and they didn't know anything. I had to ask them to check my adrenal gland as they didn't suggest it. . It's bad really. It keeps so many of us unwell they really should be aware of things. X
What happened when you had adrenal gland tested , can that make a difference
That was 20 years back after the so called specialist sat scratching his head I suggested maybe my adrenal gland needed checking and he said oh no that's not enough is it . OK we will do that they check your blood while I lay In hosp bed then inject you with something . In leg and the recheck blood to see working or not but mine was fine . So that was ruled out .I just like to get my life back asthis definitely isn't healthy .as I thought before and everyone said stick with it .. how much more do you have to have in interest of a thyroid reading fitting the perfect level I don't know . .so tired and chilled still . . Thanks for reading all my moans sure there are plenty worse x
I know that low levels of some nutrients affect balance. One in particular is Vitamin B12. For the body to be able to make use of B12 you need adequate levels of folate. It would be worth asking your doctor to test both B12 and folate, and ask for a copy of the test results and reference ranges. Then post them in a new thread asking for feedback.
Anaesthetics can cause problems with B12 :
Thanks. Dr did check all vitamins. But particularly.said wanted see d3 results. I don't know what readings were at moment I need to get my system online account reopened . As put wrong code in it took ten weeks after operation to end up not walking would that be likely . I walked across ward unaided hours after operation . No problems .. I was so glad I didn't need aids like lot patients in there .. Will try find out the readings as know normal.range may be not high enough thanks for advice x
Where on your body was the surgery performed?
"Surgery can often lead to the development of myofascial trigger points, which are tight knots within muscles that can cause referred pain, particularly in the area around the surgical incision where muscles have been manipulated or stressed during the procedure; this is commonly seen as post-surgical pain and can significantly impact recovery and function after surgery. "
Myofascial trigger points are likely a primary mechanism of muscle pain in hypothyroidism, especially in those with persistent symptoms despite standard treatment.
As thyroid patients, we face the possibility of developing trigger points (not to be confused with tender points or pressure points) with the slightest amount of provocation. For those severely affected (like me), successful therapy may require T3 monotherapy, which is where I'm now headed.
Hi I had a gall Stone removed from my bowel wall that's all incision through navel about 4 inch scar .. interesting that happens after op.. my t3 was tested by myself privately In January and was in the upper normal range and gp.tested it too and t4 .so not sure there's anything wrong with my readings .I am not in pain only hips back as attempted walk yday. Abdomen felt swollen after recovery and heavy I now find this was prob due to the low thyroid fluid retention . Since changing dosage thyroxine it does seem worse . Annoying as so much going on the more thyroxine I take the worse I seem to feel ..thank you for helping
Not sure where to start!I have an autoimmune neurological condition gluten ataxia, self diagnosed because this condition is little known about and doctors etc either don't believe in it or it takes many years to get a diagnosis. All the time the cerebellum is getting smaller and damaged by the gluten
There is a link between all autoimmune conditions.
Ataxia causes balance, walking and dizziness problems. Most of us furniture surf.
Not for one minute am I saying that anyone with hypothyroidism has ataxia but there can be a connection in family history. The one thing here that is important is GLUTEN. Just how many conditions are caused by this? How many doctors even know about it? Are the big food companies so powerful that they control doctors? I have done lots of research and seen various neurologists and it is only at Sheffield hospital that this is taken seriously.
My diet is now GF, DF, grain free as lots of grains can mimic gluten, and avoid all processed food. The labels do not have to declare all ingredients.
There is a lot of anger and mistrust out there, when you have a life changing condition and doctors are useless, specialists don't know, you have to fall back on Dr Google and do what is right for you.
I do wish it wasn't so!
Best wishes to all.
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