I've had excruciating PN from my feet to my mid thighs for eight years (occasionally onto my tummy if very bad), started five years after underactive thyroid diagnosis (I take 100mcg levothyroxine daily), and has progressed from feet only upwards. Occasional pain on hands, wrists. I take 20mg amitriptyline to make it bearable. Ordered comprehensive tests package from Blue Horizon after brilliant advice on here a few days ago, but wondering if PN would resolve with proper thyroid treatment (if I need it) or whether nerves now damaged. Neuro advised I start IM B12 six years ago and again a few months ago, but GP refused to do that (presumably as B12 looked fine - I'm awaiting print out of most recent bloods done in December). I know I was low in iron and ferritin when neuro initially advised in 2015. I took a short course of supplements, prescribed by GP, and it resolved. My GP won't do anything private neuro advises and NHS neuros don't give any thought to thyroid issue.
Peripheral neuropathy : I've had excruciating PN... - Thyroid UK
Peripheral neuropathy
I have this issue too. It's really getting me down now. It started in November 2019, I remember it specifically because I know where and what I was doing when I noticed a problem with my toes for the first time.
Now my feet and legs burn and sting at night, are highly sensitive and jumpy if touched and everything feels like sandpaper, fluffy slippers, carpet, duvet cover... But at the same time my feet also feel numb and I'm not sure where they are (if that makes sense). I too was hoping against hope that it might be inadequate thyroid meds. But I'm starting to think not. I'm using a very strong B12 oil preparation now and my levels are good so I don't think it's that. I have some issues with being prediabetic but I'm on a medication for that. I am finding the pain in my feet too bad to stand now. It also affects my back if I stand. I am trapped. Feel like I can't do anything. Walking is off the cards. I'm feeling very low about it today.
I have not been to the GP about it. I have tried to find the issue and fix it. I don't trust the GPs anymore, they haven't helped with so many things. But I think I'm going to have to go. Although it looks like there's not much they can do for it anyway.
Oh I'm so so sorry to hear how badly you're suffering. I absolutely do know what you're describing. I toggle between feeling I've got severe sunburn, carpet burns, sandpaper grazes, freezing cold, plus stiffness and losing sense of where my feet are. I've been given exercises to keep circulation optimal - going up onto my toes, rocking back on my heels, standing from sitting, and I'm going to try walking barefoot outside/using a basin of water with pebbles at the bottom to stimulate the nerves. My confidence in medical professionals has badly damaged since I became sick. Nobody agrees with anyone else and everyone has an opinion ☹️ I have a decent GP overall, but they're not specialists and rely on standard NHS tests. I find amitriptyline lets me sleep, and I keep it as low as possible (20-30mg at bedtime) and I tolerate it well. One thing I've found that helps is putting the soles of my feet on a hot water bottle, which seems to confuse the foot nerves and gives twenty mins, half an hour relief to the tops of my feet. I tried capsaicin cream, which works on the same principle - it's chilli pepper ointment you rub in to affected areas (wearing gloves!) and that does the same thing. It didn't help me because my PN is quite widespread and it would take a tube every day to do my feet, legs and thighs 🙄 Sometimes I use frozen peas wrapped in a towel or a heat pad applied which also helps briefly. A blanket cradle holds bedclothes off legs in bed, which can help (but it is a bit chilly, especially in winter). But I hope you do speak to your GP, especially as you're prediabetic. There are meds that do relieve nerve pain - I've not had anything that took it away entirely - but amitriptyline, nortriptyline, carbamazepine (use mostly for trigeminal neuralgia), gabapentin, and pregablin can help nerve pain generally so might relieve your PN. I'm about to go and change out of leggings, which my legs and feet are not liking at at all today. It takes constant management.
I think I've finally found someone who understand what I'm saying! Thank you. No one else seems to take any notice. My HRT doctor ignores me when I try to mention it. My private endo glosses over it. I most certainly don't need to stimulate my nerves, they are highly over sensitised already. Walking on any uneven surface, even only mildly uneven, feels like the hardest gravel in bare feet. I find it hard to know where to put my feet and have very few shoes I can now wear. I can't bare my feet to be squeezed at all so shoes have to be loose. I know it's spreading to my calves sometimes.
I don't think it's associated with the prediabetes. It started a year or so before that and I am treated for it. I am worried about yet more medications because as well as needing HRT and thyroid meds (which include mostly self-medicated T3 at the moment as levo does nothing for me) I have a permanent heart arrhythmia to cope with too.
Oh blimey, you don't have your troubles to seek. Yes, of course, any nerve stimulation won't work for you, sorry. I have the same problem with docs underplaying or ignoring it. I had a UTI that definitely pushed the sensations up my legs, but neuros just shrug. I take multiple meds too, including for a post-chemo heart problem and the docs have fumbled a few times with bad combinations but I just can't manage without some relief. Could you ask for a referral to a specialist physio? Your mobility issues sound quite severe. Do you use any aids? I use a power wheelchair when out and about.
No aids and I don't want to start. I run my own business and have to be on my feet and moving around for that. But it's not too bad. It's worse if I have to keep walking, like going for a walk or standing still on uneven ground. We are having building work done outside at present and what was our drive is now a builders yard and the gravel drive has been compacted and is uneven. I have to really concentrate to walk over it. Not helped by my recent prescription upgrade in my glasses which has left me with a blurred floor when I look down at my feet! It never rains but it pours.
A natural alternative which is prescribed on the continent for PN is Alpha Lipoic Acid, or ALS. Try and get one with the R form or one with S and R form as its more effective. I found it helped and of course it has fewer side effects than drugs.
But could I take it with my other issues? That's the problem now, it's a minefield.
Hi
I recently had nerve conduction studies done as I've had bad pins and needles in hands and feet for over 15 years. And since last autumn I got them in my head and torso. I've always just put up with them, as well as being hypo I have B12 injections, and fibromyalgia and my pins and needles could be any or all of the above.
My nerve studies were negative. So it's not PN but could be small fibre neuropathy which is common with hypothyroid and fibromyalgia. There are drugs which can help, like anti epileptics like gabapebtin or pregablin. And antidepressants like duloxetine and amytriptyline.
Ask for a neurology referral.
Thank you. I think I had better make an appointment and go and do just that.
Thank you, and I (literally) feel your pain 😢 I use a blanket frame to hold the bedclothes off my legs on the worst nights. Amitriptyline is the only thing that's provided relief though I also take duloxetine for a bladder issue which might be helping. Physical activity helps but is constrained by fatigue and muscle spasms. Diabetes screen has been consistently negative. I'm interested to see the results from the Blue Horizon tests, though routine thyroid screens show TSH within normal ranges. I hope you have a gentle day, and a better sleep tonight. It's such a horrible symptom to manage.
Oh lawks, that's awful! I get muscle spasms but only in specific muscles (diaphragm and back of ankles/calves). Idiopathic has been suggested to me too. I had breast cancer a few years ago, chemo, no radio, but I already had the PN and the drugs I had aren't associated with PN. Idiopathic is such a hard diagnosis. I suppose I'm hoping the thyroiditis might explain everything and I'll find significant relief with proper treatment. Thanks so much for commenting. I feel much less isolated.
Radiotherapy is such a bugger. I was lucky, I didn't have lymph node involvement or radio, just chemo. I had hormone neg so no tanoxifen needed, but herceptin positive. Herceptin treatment affected my heart, so I take BP meds to keep things pumping efficiently. Cancer treatment complicates everything.
I feel quite lucky as the treatment didn't seem to make my existing state worse. Nerve damage at mastectomy scar sometimes causes pain and discomfort, but it's occasional and I'd been well prepared for that by the surgical team. The steroids during chemo gave me a couple of really good, fatigue-free days a week too (I had thirteen weekly doses instead of three rounds of Paclitaxel because of the chronic stuff - the oncologist was fantastic). There's no way of unravelling the cause of some stuff, I know, but my aim is to make sure I'm doing as much as I can on as many bases as possible to be as well as I can get.
Yes absolutely. I'm three years on, but it's a changed world this side of treatment.
It's difficult to tell how much of the PN damage can be repaired, as there are so many factors involved, but it's best to always remain hopeful. Also a bit of a chicken and egg situation as to what caused what first. In my case, I still have tinnitus, and some spine pain that prevents me from standing or walking for long periods without sitting for a rest, but these things I can live with 😊
Without high dose B12 and regular methyl B complex, severe functional B12 symptoms recur. I also take a large daily dose of T3 only. There are many autoimmune and thyroid conditions in my family, so there's a genetic component there, which is poorly understood, despite their 'breakthroughs' in other areas🙄 I never felt well on Levo, and I got worse, but I was told thyroid levels were 'fine' and my worsening health issues were put down to a myriad of other things.
In fact, despite the blood levels, I was suffering from hypothyroidism at a cellular level, and this massively worsened after a period of prolonged stress, closely followed by the menopause. My PN symptoms became more pronounced and dramatic some time later, so I believe (although can't be sure) that being essentially hypo for so long had caused serious long term vitamin and mineral deficiencies and led to the B12 deficiency symptoms. My folate level had been below the range for 20 years, and Vit D was virtually non existent. All others were low, and not reflective of my diet.
It will be part of your health journey to find what has gone wrong and when, so I would suggest you get hold of your complete medical records, and study all the test results from the start, not just recent ones. If I had only looked at a recent test, I may have thought my folate, etc. had only just gone low, and not made the connection. You are entitled to this information, and do not need to give a reason. I believe it's free now, although if you get paper copies there may be a reasonable charge. I had to pay £50 for mine before they abolished costs, but it was worth every penny.
Hopefully you will be able to piece it all together, find solutions, and gradually come off some of the 'sticking plaster' medications you've been put on. Some of them can both hinder and damage your recovery, especially where the gut is concerned, and a healthy gut is vital, so a good place to start. We are all different, and things affect us in different ways, but all the answers will be on here somewhere, and you will definitely be able to make huge improvements to your health.
I must say I'm incredulous to see that you were recommended B12 injections all that time ago, and didn't get them! Unbelievable! I wonder if you should copy and paste this post on the Pernicious Anemia site? They're very good on there about all things B12, although some of them are also on here, thank goodness! 😊 x
Well said!
Here is the link to the PA forum on HU, you do not need to have PA to join: healthunlocked.com/pasoc
Thank you...I'm already there, but useful for OP and others👍🏼For some reason, I'm unable to plant links on the forum atm ~ something changed, and I'm not sure what 😳 My technology skills are seriously lacking! 🙄
No worries, I added it so OP and others could find their way there 
Some others have recently had issues with pasting links, but not sure what's causing it.
Thank you, and thanks for pointing out you don't need to have PA to join. I found old notes from a consultation in 2017 and my iron and ferritin were low but I don't have the levels and I took supplements that were stopped when my levels returned to normal. I'm collecting my last routine blood results from the GP this afternoon, ahead of sending off a sample to a private lab on Monday. I'll join the PA group meantime.
Thanks so much for this, Mamapea1. I feel as if I've been lost for years, with little medical help beyond symptom control (and not a little hindrance at times). What triggered me joining this forum was a neurology appt last week where I was told that he didn't know about thyroid problems, there is nobody who can help with autoimmune illnesses, that my neuropathic pain pain (including PN) was probably idiopathic - but he could tell me I wouldn't get better. I saw another neuro twice in the last six years who was the one who recommended the B12 injections (both times) but my GP won't accept it from a private neuro - even though he's an NHS consultant in Essex (I live in Scotland). Head, meet wall. But thank you for responding, that's very helpful indeed. I've been managing my symptoms pretty well (I think), pacing, resting, pain relief, etc but it's not much of a life. If I can find even partial relief, I might be able to do some part time work again. That's really my dream.
Well I'm glad you found your way here, and are no longer lost 😊 It seems to me that your return to good health has been massively hindered, like mine. Idiopathic...hmmm. I think there's always a cause, and very often a solution, depending on individual circumstances. Don't allow them to write you off, or get involved in their differing medical opinions...learn and make your own decisions.
I had it for years...the endo said this, the rhuemo said that, and all the others would join in, all with their differing opinions, and assorted pharmacological solutions. I traipsed around from one hospital to the next, getting nowhere. At one point it became popular to give you a little information booklet about your condition...I still have loads of them, they turn up from time to time in drawers and cupboards, and I don't actually have any of those conditions.
So they don't know why, but they know you won't get better? What a thing to be told 😳 There's lots of info about self injecting with B12 on here if they still refuse treatment, and it proves necessary. It may not come to that, but you may be one of the many on here who ends up taking control of their own health regarding thyroid and all it's complications, like me, and it's really not as scary as it may initially sound 😊 x
Oh that is so encouraging, thank you! It's so hard when every doctor has a different opinion. Definitely been treated like I'm exaggerating stuff, told it's not possible that I have X symptom, or tests are all normal. I've been told to take anti depressants with no symptoms of depression - I've had periods of depression before, I can tell the difference between depressed and distressed 🙄 To push back, or disagree, or even ask for more information has resulted in unpleasant reactions that make me feel stupid, or problematic. So it's amazing to find so much knowledge and experience, and to feel so much less alone in all this. I feel like I stepped off the roller coaster last weekend when I decided to stop seeing the consultants who add nothing of value to my life.
Yes I had the same...and I wish I hadn't spent so long listening to it all, and trying to work it out on my own, and reading all the wrong books, based on what they said I had. I now have a much more valid book collection. I could've wallpapered my whole house with prescriptions, and that would've made better use of them, but not my style lol! Yes, the tests they do, and with their ranges, all say you're 'fine' and any other 'idiopathic' conditions are either all in your mind, or you're given some dustbin diagnosis, which you then go off and research when you don't get better.
Women often appear to be treated in this way more often, and so I was happy to sign up with a female GP, who was also my 'friend' (!) when my original GP retired. Big mistake! The things she wrote in my med notes were shocking, and very hurtful.
I'm always amazed at the risks they take with plying patients with so many potentially damaging medications, (antidepressants are always a big favourite in the mix) and yet they view T3, the active thyroid hormone that the body needs, as some kind of dangerous voodoo! Essential for many, and especially those with no thyroid/genetic issues, yet trying to obtain a prescription for it is often completely out of the question. A bizarre situation, that has no scientific basis at all.
I'm glad you're free of the merry go round...now the only way is up 😊 Yes I agree that it's a great comfort to connect with others that can understand what you're going through. It really does help, and I clearly remember the relief I felt when I first read through all the posts. I've never looked back, and I expect you won't either x
Yes! I would solemnly go off and do my research after what I thought were discussions, and when I asked questions at the next consultation, I was told I was anxious. As if trying to find out what was wrong and do as much as I could to put it right was a psychological flaw. The first neuro I saw (who diagnosed me with Typical Middle Aged Woman Syndrome and tried to give me antidepressants) told me to look at a website and tell her what I thought. I told her it was a big list of neurological symptoms which could represent literally hundreds of different possibilities, while labelling mostly female patients with a psychological disorder ("once the patient is reassured nothing is seriously wrong with them, most spontaneously recover" - or more likely, never go back to see the crappy neuro spouting rubbish about 'trauma') and offered absolutely no evidence to support it. I didn't see her again.
I've read so much stuff in the medical literature about the shocking way women are treated, the amount of pain we're expected to live with, the misdiagnoses because doctors see what they expect to see rather than listen to women's actual descriptions, and the number parked away out of sight with drugs and reassurance instead of proper support and treatment. It boils my blood.
I ended up on amitriptyline, duloxetine and tramadol, all at max capacity, because they just kept trying new meds for pain. I weaned myself of tramadol entirely, and cut the other two in half, over about 18 months, while continuing to live with the pain. No doctor ever asked me to, and I'm in no more pain for cutting out the opioid and minimising the other two. Nobody seemed bothered about it. Meanwhile, an instruction last week that I should stop my heart medication - prescribed by a cardiologist after three ECTs confirmed herceptin had affected my heart function - to see if it's acid reflux that's causing throat pain was what broke me, I think. A neurologist has no place fiddling with heart med.
Can you recommend some good books as a starting point? Though at the moment my confidence is so low, I'm convinced my bloods will come back next week showing nothing wrong with me at all 😢 I feel doctors have done a right job on me. x
Agreed re the whole attitude towards women...I always felt I was 'talked down to' by male specialists, the only exception being a very pleasant cardiologist that I saw, although I left him scratching his head about my heart problem, as he didn't join the dots either! *sigh* My heart has recovered now I'm no longer hypo. The 'dangerous and deadly' T3 has fixed my heart!🙄
There are so many books to choose from, and I believe there's a suggested book list on here somewhere, but I think The Thyroid Patients Manual by Paul Robinson (our very own, he's a member on here) would be a good start, or there's Why Do I Still Have Thyroid Symptoms When My Lab Tests Are Normal by Datis Kharrazian which (if it's the one I'm thinking of) has good info on the many things that can affect thyroid function.
Another popular one for members to start with is Your Thyroid and How to Keep it Healthy by Barry Durrant-Peatfield, which may be available in used form very cheaply online, so may as well? I also think you should definitely order Could it be B12 Deficiency ~ An Epidemic of Misdiagnosis by Sally Pachelock. A bit of an eye opener, and it was also very useful in encouraging my vegan daughters to supplement their B's regularly! You could always put a new post up for more suggestions, as I may have missed something important from the list. I'm drowning in books here! 😂 x
Edit ~ also The Magnesium Miracle by Carolyn Dean MD 👍🏼
So sorry to hear you are suffering. I have had PN for many years. Luckily for me Pregabalin taken morning and night with Imipramine added at night does help me sleep rather more. I also take co-codamol 30/500 for musculoskeletal pain as required. Possibly helps with sleep but plays havoc with constipation problems.
I have in the last year or so checked vitamins etc and now supplement the Bs which has helped.
My GP has so far been unable to make any alternative suggestions. I have never asked for a referral as being both hypothyroid and diabetic it’s not surprising I have PN. Hypothyroidism diagnosed about sixty years ago and diabetes fourteen years ago.
I would suggest you ask the neurologist to send you for an endoscopy rather than stop meds if he wants to check for gastro issues causing the throat pain. I have a slight heart issue and when I developed upper chest painI was immediately given an endoscopy to check cause, turned out I have hiatus hernia and Barrett’s oesophagus. They were what caused my pain. Hold firm and hopefully you’ll get this done.
Good luck
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