Hello I have not posted here before but was advised to by Marz who has been most helpful to me when posting on Pernicious anemia/B12 site. A little background, B12 deficiency, 3 years of weekly injections. I have axonal loss in legs and small fibre neuropathy. An MRI a month ago showed I have damage throughout my spine and lumberL 5-S1 touching the nerve. I also have a frozen shoulder and torn tendon. My thyroid has been tested at least three times over last few years and so far gp refused treatment. My latest results are
TSH 4.28 mU/L range (0.3 - 4.2)
FT4 17.0 pmol/L range ( 10.6 - 23.2)
FT3 4,1pmol/L range (3.1 - 6.8)
My symptoms which have been constant are the usual pins and needles, burning, ice cold feet and legs. I have the sensations of feet in concrete and as though someone was crushing the bones on top of my feet and ankles in a vice. I believe this is due to the nerve damage. I cannot regulate my body temperature and even with heating and fire lit I am old and feet like ice blocks.. I also have spasms and cramps and spasticity in toes. The spasms and cramps which are nightly now and have been so for some months. They are excruciating and I may have two or three or more each night which means I have very little sleep. I am so tired. Since my frozen shoulder some months ago I am not able to support myself when a spasm starts and cannot get up quick enough, I have had a few bad falls recently. Marz has pointed out to me there is a connection between thyroid issues and frozen shoulder. I am desperate to get some help. I have been through the nhs protocol for nerve pain without success. I use lidocaine patches on feet and ankles which are the only ease I get and have been referred to chronic pain clinic. I am becoming more convinced my thyroid could be contributing to my symptoms and need something to convince the locum who I will see on Wednesday. I think she will listen if I can make a case for it. My GP refuses outright. I would appreciate any advice or suggestions.
Kind regards Potter5
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Your symptoms could well be due to hypothyroidism and your elevated TSH is consistent. The sensible approach is a trial of levothyroxine which is cheap and safe. It's stupid trying all these dangerous pain killers when a cheaper safer option is available.
From a practical point of view I had frozen shoulder which was in part due to hypothyrodism. I found an electric blanket was of great help, the sort that goes under the lower sheet and can stay on all night. A mattress has a lot of mass (try lifting one!) and so retains a lot of heat, or cold. When you get into bed the mattress can suck heat out of you for hours making a frozen shoulder worse. I found the electric blanket eventually got rid of my frozen shoulder but it took a long time, a year or so. You don't have to have it too warm just enough to take the cold out of the mattress.
Hello jimh111, thank you for your reply. I will try and get locum to agree to a trial of levothyroxine. I also have heated under blanket and have to keep it on all night. Trying to get sleep propped up with my shoulder is really difficult but when my toes turn up, yes my toes turn up and ankles lock and calf muscles go into spasm and I cannot get out of bed quick enough and I cannot support myself as I have no movement in right arm, I am afraid I have recently had a few falls. I am really hoping that the thyroid could be contributing, I am running out of answers, no one seems to know. Thank you so much again jimh111 and i hope you are well recovered. Kind regards Potter
Hello Treepie, yes you are right we do need lots of water, and I do take plenty. I have also discovered if I eat carbs in the evening my spasms are worse, I think it is due to conversion of sugars, although I am not diabetic. , I know it seems strange when you tell people your toes turn up, my big toe goes as stiff as a piece of wood and when my ankles lock it takes my partner all his strength to push it to the ground to get the calf muscle to relax. It is excruciating and can happen several times each night. GP looks at me as if I am mad and has no conception of what I am talking about. So it is only when you hear from other people who have similar symptoms that you have any chance of getting some answers. I hope you continue to keep well and thank you again. Kind regards Potter.
I remember that feeling of the bones on the top of my feet being crushed - especially when I woke up in the morning. And, the soles of my feet felt burnt. And felt as if they'd been folded in half, longways, and crushed. And standing on them was agony. I'm pretty sure that's a hypo symptom. In lists of hypo symptoms, it just says something like 'foot pain', but does not specify quite how terrible that pain is.
However, it's very difficult to find a doctor who knows anything about symptoms. They might know the odd one, but the foot pain is not usually one of them. I suppose your doctor tells you that your thyroid is 'fine', and the TSH needs to be over ten before he 'can' diagnose you?
Thank you for replying to me Greygoose . in three years you are the first person who has mentioned they understand about their bones in the top of their feet being crushed. I also feel my ankles are in a vice and I am screaming in pain on the inside every day. I use lidocaine patches
on top of feet and round ankles during the day I have lots of nerve damage due to B12 deficiency and put these symptoms down to neuropathy even though no one seemed to have these symptoms. If I spasm during the night my ankles lock and in the morning they lock and I have to walk holding on to furniture until they ease. I also have the feeling of my feet and toes being stuffed with cotton wool. As you say my GP has over the past few years maintained my thyroid is fine and refused to budge on thyroid treatment. I have had an antibody test and it was negative but I think there is another part I haven't had done. I hope you are no longer in that awful pain and thank you again for your reply. I will post next week after my appointment. Kind regards Potter.
Hello Greygoose, I am really sorry about this. All I can suggest is that you get plenty of b12. With neurological symptoms you need b12 injections and much more than the regular 3 monthly. Lots of people end up self injecting.Also foliate and potassium very important. Potassium from food is best. I also feel that the gp's or even neurologists do not put connections together and we are often left with permanent nerve damage, but hopefully you have been diagnosed early. Thank you again greygoose and I wish you well. Kind regards Potter
hello bunnyjean, thank you for replying. i think i would be concerned that a new practice may not be any better. the locum is very open and refreshingly was happy that i was to researching. very rare i think. she has been so kind and helpful i think i am hanging on to see if she is going to remain at the practice. Thank you again bunnyjean and i wish you well. Kind regards Potter
I too used to have really terrible pain & trouble with my feet, legs, shoulder, muscles and other joints. I'm not pain free but I'm a lot better than I used to be.
For months now I taken Magnesium Glycinate & I can catergorically say that has been my salvation dealing with painful muscles & joints.
The one problem that still
lingers is not being able to stand for any length of time, I move from foot to foot if in a queue. If on a night out (which is rare) I have to make sure I get a seat. I sit when peeling & cutting veg. I have plantar fasciitis (I wear bespoke insoles and can't do without them) & this I believe is linked to thyroid just like all the other joint & muscle pain.
I had similar foot trouble to you and when massaging the top of my feet it was terribly painful.
Magnesium Glycinate is best taken at night as it's calming & really helps with sleep, it supports the heart, brain, muscles & joints and helps with constipation.
I was on holiday recently and I forgot it. 1st week was hell, awful sleep, painful muscles & joints. Ordered some & my 2nd week was wonderful. I know I can't do without it now and highly recommend it.
Hello Paula 101, thank you for the welcome. I am really sorry you are in such pain in feet, muscles and joints. I also use magnesium both in capsules and keep magnesium spray by my bed for during the night when I go into spasm. When on holiday I take it with me. I am glad to be able to put all these and others' symptoms together and hopefully build a case for getting treatment. Thank you again and best wishes. Potter
Have you had vitamin D, folate and ferritin tested
These are often too low when thyroid is low
All thyroid tests should ideally be done as early as possible in morning. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
Hello Slow Dragon, thank you for replying. Yes my test was done at 9.00am and I always fast. My vitamin D is 80 and I supplement 2000iu (i think) daily. Foliate is 20, I take foliate supplements daily and this has gone up over the last few years. Started around 6 I think. I had asked for ferritin, it was missed this time but is never high. Although I use lemon every day and squeeze over vegetables to extract as much iron as possible. My symptoms haven't improved really over the last 3 years even with b12 injections weekly,eating no gluten and staying away from sugar as although I am not diabetic , sugar or high GI foods put me into spasm very quickly. Thank you so much again and I will post up after doctor appointment. Hopefully I shall get some treatment. Kind regards Potter
Hello Slow Dragon, thank you for replying. Yes my test was done at 9.00am and I always fast. My vitamin D is 80 and I supplement 2000iu (i think) daily. Foliate is 20, I take foliate supplements daily and this has gone up over the last few years. Started around 6 I think. I had asked for ferritin, it was missed this time but is never high. Although I use lemon every day and squeeze over vegetables to extract as much iron as possible. My symptoms haven't improved really over the last 3 years even with b12 injections weekly,eating no gluten and staying away from sugar as although I am not diabetic , sugar or high GI foods put me into spasm very quickly. Thank you so much again and I will post up after doctor appointment. Hopefully I shall get some treatment. Kind regards Potter
The magnesium will help - is it possible to change your doctor ? You need someone willing to work with you not to make things worse. My feet and other leg problems are much better since changing to Natural thyroid from Levothyroxine but you should be given a trial of Levo first. Tell the locum that the TSH threshold has been lowered in most (civilized) countries to 2.5 at one point in USA. Good luck
Hello lidoplace and thank you for replying. I do take magnesium maleate every day and also magnesium spray which I keep by my bed for when I spasm which is nightly right now. ihave been with the same gp practice for over 40 years. Gp not great but the nurses are extremely good. we recently have had a locum not sure how long she will stay but she is the only one who has tried to help me since my b12 diagnoses 3 years ago. always having to battle with gp as she thinks nerve damage means antidepressants. if connections had been put together a few years earlier i think i would be in a better place today. to be honest i don't think many of them are great and hoping locum may stay for a little longer. i am trying to get enough information to build a case for thyroid treatment trial. thank you i will point out the tsh levels as you suggest. Marz has pointed out about the frozen shoulder and a link to research paper, jimh111 has also mentioned this. it is just convincing locum that the levels deserve a trial. thank you again lidoplace and i hope you continue to improve.
I am sympathetic to all your aches/pains/spasms with nearly 40 years of spinal problems plus diabetes, hypothyroidism, and fibromyalgia diagnoses ( see my profile)...I know from personal experience doctors tend to rather pigeon-hole ailments, and do not recognise links of for eg pain to the likes of hypothyroidism( especially when your TSH levels are 'normal)'. Last winter I was confined to a sofa 24/7 hardly able to walk both from pain from hip to feet, and seized up hips ( supposedly due to fibromyalgia), but I did a lot of research and came across Dr Lowe's archived papers and Q&As on the Thyroid Uk website...he thought fibromyalgia, which is really a diagnosis of exclusion, was due to un- or under- treated hypothyroidism. Your coldness, frozen shoulder, painful feet all sound to me like they could be caused by hypothyroidism ; your TSH is high( tho you will have found on the forum many doctors think it should be 10+ to be treated). Persuade the locum to at least give you a trial of levothyroxin for 8 weeks, ideally 50 mcg(25 mcg for elderly [ open to interpretation perhaps!], those known to have weak hearts or infants)...it is only a hormone replacement not a drug, and as already suggested cheap and better for you than lots of pain killers. Back to my 'disability' by adding T3 to my levothyroxin, stiff hips started to improve instantly, still have occasional spine disalignment, but much pain gone and better sleeping, and in last few weeks not had to resort to extra winter layers when all around complaining of heat! Good luck ...I hope levothyroxin proves to be the panacea for at least some of your problems.
Hello judithdalston, thank you for replying. I am so sorry for your many years of painful conditions. Yes, you do get pigeon holed, and gp's I think refer to their protocol without actually considering the many symptoms the patient has and fail to get a proper and timely diagnoses. and I think that is why so many people suffer many years without the correct treatment. Interesting about dosage, I am 66 and about 8st 6lb and quite fragile at the moment with the amount of pain so would 50mcg be offered do you think. wouldn't want to be under prescribed if I was offered less and no improvement. Sorry I don't know much about thyroid treatment, would T3 be offered, and you say it has made a big difference to your stiffness which is wonderful. . I find the symptoms of stiffness interesting and have been looking for a cause because I am not convinced it is caused by the nerve damage, and wonder if thyroid treatment would help ease my tight vice like ankles and feet. Awful when you don't sleep. I have'nt had a night's sleep for months so difficult to know if tiredness is due to little sleep or low thyroid. Vicious circle I am afraid. I hope you continue to improve and and life gets easier. Thank you again. Kind regards Potter.
Hello potter 5. Good God almighty it appears to me that you have the kindness in your heart of only one who has suffered so much. I really think others here will be able to help you much more than I can but I do believe that T3, liothyronine, should be mentioned, as it is the active form of T4, the (Levo)Thyroxine that you have been prescribed, which is, also, the typical drug that all GP's & the majority of endo's will prescribe for you, although seeing your bloods, no endo in America would "do anything at all," except dismiss you and maybe prescribe you an anxiety pill."
Don't take my advise over any doctor's however or anyone else here; I just believe T3, which, is also good for the heart, may (possibly) be of a help for you. I take T3-only and have for the past 5-weeks; before that I took T4& T3 for a month and before that Levo, T4 only, for 26-years. T4 finally, for me, personally, stopped working and appeared to go in reverse, referred to as Reverse T-3, or RT3, which I haven't even had checked yet; all I know is it's effect on me (only) and go (only) by how I (alone) feel. There is, also, a more natural cure for Hypothyroid, Natural desiccated thyroid, or NDT, which comes also, through different manufacturer's brands, in a pill form, which I have yet to take.
Anyway, I am very sorry to hear of your painful journey, speaking as one who has only experienced a bare modicum of what you obviously have, but I hope everything you read here can be of some, small bit of comfort, or empowerment, to help you along in this god-forsaken world, where, every little now & then, there comes the possibility that the spirit can be visualized, but (almost) never verbalized, although we must still try our best to do both.
Hello GKeith, thank you for your reply and kind words. I think when people have been struggling for a long time and in pain they have true empathy and that is what I have found on this site and B12/pernicious anemia site. People are kind and helpful and generous and we no longer feel we are in the wilderness. My condition and symptions has been just over three years, every day, but some people have been in pain many years, almost unthinkable. We take life day at a time and keep learning and hoping for improvement. Is T3 widely prescribed, as I don't know the treatment I suspect I will be offered whatever is standard at best. I am sure I will learn lots and will do further research. I am glad your treatment is working and that you have been able to make the right adjustments to improve. Thank you again. Kind regards Potter
I think you should ask greygoose about T3; I am an amateur compared to her but I will tell you what I know and that is I judge (now) not by what any doctor tells me but what results tell me, and, by that I simply mean "how I feel" and T3 did (does) it for me. There are many books and articles praising, as well as demeaning, T3 and you, a complex individual, human being are unique, as are we all and only God knows why he made us this way or why terrible things happen to us so praying is always good thing, but so also is knowledge and any doctor who says to you to "stay off the Internet, T4 is the only cure," or something similar, and he will not prescribe it (T3), aka liothyronine, for you should be dumped immediately, if not sooner.
Peace be upon you and on us all, who suffer these things, things that many highly educated individual human beings could "solve" for us but only if they spoke, and believed, the truth, which they, apparently, cannot bring themselves to do. Doctors, especially endo's are fast becoming the bane of my very existence.
Hello GKeith and thank you again. I will ask Greygoose about T3. My first hurdle is getting locum to agree to treatment and it will only be a trial I think so will have to accept whatever is prescribed. Few doctors I think like you being Dr Google, it really gets their back's up. Really annoys my gp, locum different attitude, really very good. Thank you again. Kind regards. Potter
Anytime I can find the time I will try to help, as when we help others, we, also, help ourselves. I hope you (and we all) eventually, find our correct dose of medication and the right mind(s) to accept it in.
Welcome to this site. I personally have found it very informative. I have restless leg syndrome where I have pins and needles or another way to explain it is that it feels like creepy crawllies under my skin which in turn makes me move my legs uncontrollably. I found by taking magnesium and either upping the dose or lowering it that it has helped with the restless legs. Hope you get some answers soon.
Hello Arlenka and than you for welcome and reply. Yes, I also take magnesium and magnesium spray when I am in spasm to help release the muscles. I also get restless legs from time to time but it is the muscle lock at ankles and calves and toes turning up are the main problem and of course feet really tight and vice like sensations and bone crushing on top of feet permanently. Really debilitating. I am hoping the doctor I am seeing tomorrow will consider thyroid treatment. I'm a bit concerned as I am really thin and very fragile at the moment that the treatment could make me loose weight further. Arms are like sticks, especially my right arm which has frozen shoulder and no movement. I am pleased the magnesium is helping with your restless legs and I hope you keep well. Thank you again Arlenka. Kind regards Potter.
I am shocked any GP could dismiss the possibility of you being hypothyroid like that! But if you read more posts here you will realise many of us have had the same problem!
The trouble is that thyroxine used to be misused (and prescribed) as a slimming aid and many doctors still assume that people asking for it are simply too lazy to try diet and exercise instead, even when the symptoms point to genuine hypothyroidism. You could discuss this with the locum and see if you can persuade him/her to let you try it.
I am sorry to hear of the pain you are suffering and hope that you may find some easement of it.
Hello Petronella, thank you so much. My TSH has been just outside the range when tested for the last few years . I am 5' 1" and 8st 6lb and have become quite thin and fragile over the last year as I have become intolerant to gluten, and sugar, although I am not diabetic, and if I have carbs at night I have multiple spasms and leg cramps, at least I think it is a contributor. My symptoms could be due to the b12 deficiency nerve damage, or maybe the mri scan showing disc touching nerve at S1 in spine but it may be connected to my thyroid. I had no idea until Marz mentioned about frozen shoulder connection and muscle weakness and several people here have mentioned painful bone and muscle pain and stiffness. I really think it is worth a trial of thyroid treatment and will be putting it to her tomorrow. I really appreciate the kindness of all the people who have responded to me. I have been in major pain now for 3 years and feel worn down. My sense of humour is waining and that's not good. Thank you again Petronella. I will post up after my appointment tomorrow. Kind regards Potter
Hello Petronella, thank you so much. My TSH has been just outside the range when tested for the last few years . I am 5' 1" and 8st 6lb and have become quite thin and fragile over the last year as I have become intolerant to gluten, and sugar, although I am not diabetic, and if I have carbs at night I have multiple spasms and leg cramps, at least I think it is a contributor. My symptoms could be due to the b12 deficiency nerve damage, or maybe the mri scan showing disc touching nerve at S1 in spine but it may be connected to my thyroid. I had no idea until Marz mentioned about frozen shoulder connection and muscle weakness and several people here have mentioned painful bone and muscle pain and stiffness. I really think it is worth a trial of thyroid treatment and will be putting it to her tomorrow. I really appreciate the kindness of all the people who have responded to me. I have been in major pain now for 3 years and feel worn down. My sense of humour is waining and that's not good. Thank you again Petronella. I will post up after my appointment tomorrow. Kind regards Potter
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