Good morning. I posted this in the pernicious anemia forum as well but I thought I would post it here. You guys help me so much the last couple of days So I was doing some research from what you told me about my condition and I ran across this article from Mayo clinic. It doesn't have a lot of information but I found it helpful. And now I feel like I have a different avenue to go down to find treatment for my painful neuropathy in my feet and my hands. It also answers some questions I have about my extreme muscle fatigue. I hope others find this helpful. Thank you for all your help the last few days.
For 11 months now, I've been coming on this forum for help, and I've learned so much from all you great people.
I noticed as I learn more, that so many people with B12 deficiency / PA also suffer from thyroid issues. I would go over my blood work and say at least I don't have that thank goodness. But it turns out that I do have hypothyroidism, so I've been doing some research as to how to help myself and what to do. As I was searching, I found that hypothyroidism can cause extreme pain in your feet and hands.
Suddenly, I realized this was my issue! All this time I can't figure out why my feet and hands won't get better. So I tried more B12, less B12, D3, B6, etc. I've tried everything. It turns out that hypothyroidism can cause peripheral neuropathy.
I thought it would be interesting for some of you who are suffering like I am from unresolved peripheral neuropathy, that possibly it's not just our B12 deficiency that is causing this neuropathy in our feet and hands, but that it can also be hypothyroidism.
It only seems to be an issue with hypothyroidism as far as I've read so far and not hyper. But I thought this information might help some of you. My hypothyroidism has been being ignored because it's only a couple of points away from being flagged as an issue on my blood tests. So I submitted my test results to the thyroid thread here on health unlocked, and everybody on there said that I have hypothyroidism. That my numbers reveal that I've probably been suffering from it for a long time. Because they're not looking at my numbers correctly. So I thought this could be happening to somebody else too.
I found this article about hypothyroidism and peripheral neuropathy. It doesn't have a whole lot of information but I found it interesting. And now I know I have another avenue to go down to try to find help so that I can walk without excruciating pain.
I will read the article after I comment. Thank you. I too have this same issue in my feet and legs. Terrible pain if I try to walk and I can't really feel connection to the floor anymore which makes me off balance. I have both pain and numbness in my feet. I can't find anything to wear on my feet that don't hurt me apart from lined Crocs. I live in those. Even fluffy slippers feel like coarse grit sandpaper sanding my feet with every move.
Peripheral neuropathy is a symptom of hypothyroidism on the Thyroid UK symptom check list. Not many of us seem to suffer with it though. At the same time I have pain my my thighs all the time and very weak legs. I can no longer get up from the floor easily. It really scares me because I have tried everything to improve my thyroid health. I'm on Armour Thyroid NDT now and still not feeling better.
Hi fancy pants 54, thank you for commenting because before yesterday I had no idea neuropathy could be related to thyroid issues. I'm very sorry that you suffer with it It is excruciating and life-changing. It has really destroyed my life. I know that you are very aware of what I mean. Getting up from the ground is very very difficult. And that is really scary. A lot of people with B12 deficiency and pernicious anemia have thyroid issues I wonder if it's vice versa. If you've had immune thyroid issues most of your life you might want to check and make sure that your B12 is okay. Because I read somewhere, and this is all new to me, that thyroid medicine can block you from absorbing B12. So I don't know how true that is. But it is worth a try to see if you should take some B12 to help with your neuropathy.
I take daily injections of B12 and it was helping with my feet I was crawling on my hands and knees for about 3 months because I wasn't strong enough to use crutches my legs and my arms and my hands are so sore and so weak that I couldn't use my crutches or my canes So I bought some knee pads and I crawled everywhere. My feet hurt so bad now especially my left one that I bought what's called an eyewalk crutch. It's like a peg leg for a pirate. And I kneel on it and strapped my leg in and I can walk without crutches without putting my foot on the floor. But it's very tiring and with the weakness that I have it's kind of hard but I'm really glad that I have that crutch because when I can't walk at all and I need to stand up It has come in very handy. Other than that I crawl if I'm in too much pain it's just easier once you're down there to just stay down there. I really hope you find some relief and that this article might shine a little bit of hope on it. Good luck to you.
I am very aware of the B12 possible issues so I am on top of that. I am taking B12 regularly and have managed to get my levels up higher and now I'm using B12 drops which are supposed to be even better so I shall see. None of the B12 improvements have made any difference to my feet. Your situation sounds terrible, I'm so sorry. I can walk. It just hurts a lot very quickly. I don't need a stick or anything. But I sit down too much because it's less painful.
It's a very unpleasant thing to have on top of no energy from thyroid problems.
It is all so confusing. I'm so sorry that you're suffering. I can walk most of the time too but it's extremely painful. And I have to take small shuffling steps. And I trip a lot because I seem to not lift my feet high enough. And I have no balance anymore. I'm glad you're looking into the B12 thing.
Have you had B12 testing done? Like an intrinsic factor test to see if you can absorb B12.
Your thyroid treatment doesn't seem to be helping your feet, and my B12 treatment doesn't seem to be helping my feet. Maybe I need thyroid medicine and you need B12. Maybe together they'll help us. I just don't know and neither do my doctors so where does that really leave us? We got to keep plugging along and trying to figure this out. Good luck to you.
My B12 results last time were good. I was happy with them for the first time in a long time. But I've not been tested for intrinsic factor. I will put that on the list.
My feet are on the ends of my legs, but I cant feel them much. I wear wellies most of the time, and they are not too bad as they dont cling anywhere. I have been diagnosed with peripheral neuropathy, which came on during the looooonnnngggg time it took them to diagnose Hashi's. It has got worse, but my B12 is OK. GP ignores it, has never offered any help.
I find drinking proper tonic water helps, especially if I add gin... 😀
Lololol gin!! Gosh but really this is no laughing matter. You can't feel your feet at the end of your legs because of hashimoto's disease? So your neuropathy is completely caused by thyroid? They said your B12 is okay? Just okay? I wonder what your actual numbers are. Do you know? Some doctors think 300 is okay when It's not.You say you can't feel your feet which is one of my fears, because of fear of amputation. Is that a legitimate fear or am I scaring myself? I'm only 61 I'm afraid of losing my independence.
No, ~I dont think they will drop off, it just feels like walking on lego covered in bubble wrap. Its a wonder I dont get trench foot as I am always managing to get water(and other substances from the back end of sheep and cows) inside the wellies!
I am sure I would feel if I got an infection and stubbing a toe still hurts, so I dont think there is any risk of amputation, so you can dismiss that fear.
Well that's good to know. Lolol. I love that you get Sheep and cow poop in your wellies. I love it. I know what you mean about things still hurting even though you don't have feeling. My big toe is numb and blotches of areas on my legs. They have deep feeling just not specifically feeling.
That's a bit like me. I can't feel my feet properly, or more accurately I can't feel the ground below my feet properly, but I can sure feel pain, heightened pain from the smallest pebble or uneven floorboard! The Lego analogy is a good one. Even my furry slippers feel like coarse grit sandpaper rubbing my feet raw and by the end of the evening I can't bear my feet on the floor even sitting. Yet my feet are highly sensitive and if I so much as just touch the sole of one with the toe of another I will shoot through the roof. Trying to cut my nails means I have to grip my feet in a death grip.
I am having horrendous trouble with walking due to having random numbness, in my feet, vibrations in my shins and restless legs that keep me awake at night. I also get random pins and needles in my face, hands, abdomen too. Had to reduce my thyroid meds as slightly over treated my T3 but will be testing next week to see where I am again. The over whelming tiredness I feel every day is just not improving. I'm using Better You B12 oral spray every day though as my B12 was only 281 range 180-900 so the doctors said it was fine. If this doesn't get my levels up I'll revert to self injecting as I've finally managed to get some hydroxocobalamin. I've got an appointment with a neurologist soon too as I need some answers as to what the heck is going on with me. I hope you get your thyroid treatment sorted soon and also manage to improve your mobility.
Hi cat lover3, I'm very sorry to hear how much pain you're going through. You say you had your B12 tested and it was low. You're sliding scale of B12 range goes quite low it's very hard to get that low. People in the 250 range are already showing symptoms. 281 is really not that great. Are you a vegetarian? If you're not you might have an absorption problem. A lot of people with one autoimmune issue often have others. And I know that thyroid and B12 often go together. How often are you injecting your B12?
I inject I would say just about every other day sometimes every day depending on if I'm in a flare-up, and sometimes I can go two or three days without injecting. It just depends on how I'm feeling. A lot of the symptoms from thyroid or hypothyroid mimic B12 deficiency symptoms. So it's very hard to tell between the two.
It Turns out that I don't have that bad of a thyroid problem according to my new blood tests, and I probably won't even get on medication according to what somebody said here. My numbers have improved since my first set of numbers in December. But I'm still feeling terrible.
However my red blood cell count has gone even lower now so possibly my anemia is rearing its ugly head. But with B12 injections every other day I don't understand why I'm still anemic. And why those numbers aren't getting better. It's all a very confusing mess.
If you're not injecting every day or every other day or even at least once a week perhaps you need more B12. I too have the same neuropathy you do and I know what you mean about your legs and vibration. Vibration in itself is very irritating for me. I have an electric toothbrush that I can't use because the vibration makes my head feel very strange.
The neuropathy and the leg problem that you're describing is very similar to mine. Today my feet are actually a little better than they've been all week. I must have been having some kind of flare up because my face has been puffy. My feet and my hands are puffy and sore and I just seem to be in more of a flare-up than normal. That's why I started looking at all my blood work numbers again.
Sorry I don't have any answers for you, except for that possibly you need more B12? Maybe even D3. I know that D deficiency can really make your body ache.
Also, you should check your folate. A folate deficiency can mask a B12 deficiency. So you should never treat a folate deficiency without first treating a B12 deficiency.
I wish I could help you more. I know about pernicious anemia and B12 deficiency but I don't know anything about thyroid. I hope you find some relief. Neuropathy is life altering. The quality of life is greatly diminished because of it. I'm very sorry that you're suffering from it.
Yes I've been playing around with different types of b1 and dosages. Thiamine HCL gave me amazing energy and improved my gut transit time but causes me to have reflux. Recently ordered Allithiamine and God willingly it will help with fatigue, digestion and other symptoms.
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