Peripheral neuropathy B12 and hypothy... - Pernicious Anaemi...

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Peripheral neuropathy B12 and hypothyroidism

EllaNore profile image
6 Replies

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 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 pain in the feet.

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.

So 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 hope others find this helpful too.

mayoclinic.org/diseases-con....

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EllaNore
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6 Replies
Sunshine1932 profile image
Sunshine1932

Thank you 😊

EllaNore profile image
EllaNore in reply to Sunshine1932

You're welcome. 😊

Jillymo profile image
Jillymo

Hi EllaNore,

I am in the same category as yourself, 🦶 😫 it's agony. I have a Dr coming out on Weds to check blood flow. I suffer with APs (sticky blood )

I am also on the thyroid forum i'm hypo and also have hypoparathyroidism. Thank you for highlighting the ling with regard the foot pain. I too have uped the B12 also tried to cut it down but as soon as I do the pain increases. My idiotic dr curt my thyroid meds down by 100mg ! There was no gradual reduction which left me feeling very unwell to say the least.

I will be stuffing your link under my endocrinologists no it all nose. 👃

This maybe of interest..... ncbi.nlm.nih.gov/pmc/articl...

pubmed.ncbi.nlm.nih.gov/186...

EllaNore profile image
EllaNore in reply to Jillymo

Gosh Jillymo, I'm sorry they cut your meds. After all you've been through with doctors the last year, Im saddened they would do that to you. I'm glad somebody's coming out to check on your blood flow. I feel like my muscles and my tissues are not getting what they need. Not only do they get fatigued but there comes a point where It actually feels like my tissues need lubricating. Everything I do is very labored but I still do it. It's just 10 times harder. And I huff and puff the whole time. It almost makes me feel like there's not enough oxygen in my tissues. But I don't know, I'm not a doctor.

I had some labs done yesterday and I'm still waiting for some of them to come in. I had thyroid and cbc testing done so we shall see.

Ft3, ft4, TSH and two antibody thyroid tests🤞

Good luck with your appointment 🤞

Thank you for the link. Seems this patient had a confusing situation too. my calcium has been low on occasion. And I take D3 once a week plus every day I take a calcium plus D3. I consistently seem to have enlarged red blood cells and fewer than normal. I wish I could post my labs and have somebody tell me exactly what's wrong with me. Wishful thinking. My blood work is confusing. I have some slightly low and slightly high things but not low enough and not high enough but yet they all point to the common denominator of macrocytic anemia, b12d. Or a blood disorder. I guess it's not a matter of taking a few pills and injections and getting on with life.

When I first got diagnosed with B12D, my doctor did use the term idiopathic neuropathy. Of course idiopathic meaning they have no idea why. I feel like I'm just one big idiopathic person Lolol

Anyway, good luck Jillymo!! 🤞

Hi EllaNore

What an interesting article you have submitted. I was diagnosed with Pernicious Anaemia about five years ago and some few years before that with Hypothyroidism. I have been taking Levithyroxine ever since I was diagnosed with my Hypothyroidism but my periphial neuropathy did not start until shortly before I was diagnosed with PA so natuarally have always associated it with with PA and just like you have experimented Self Injecting with B12 over a variety of different periods from EOD up to every month but nothing seemed to alter my symtoms so perhaps it is the hypothyroidism that has been the cause of my problems all along. I suffer with numbness in my feet and very tight calves along with a weird feelings, similar to a numbness in my lower legs. I have regular 3 monthly injections from my surgery and have never told them I self inject for fear they would stop the injections altogether. I was even sent to a neurologist early on which was a total waste of time. I guess because I have had problems for so long anything I try and do now is not going to alter anything but very interesting all the same, so thank-you for your input.

EllaNore profile image
EllaNore in reply to Swinging-Chandelier

You're very welcome swinging chandelier, I'm glad you found it helpful. When you mention your stiff calves, that is how mine feel. That's a good description.I feel like they don't want to bend and flow smoothly like they're dry or unlubricated and weak and painful. I have patches of no feeling up and down my legs and feet, and under my skin seems to hurt. Feels bruised. Like me fascia is aching. And my feet feel like I'm walking on razor blades, hot coals and nails all the time. But I dread putting my feet on the ground and standing up.

Putting my feet on ice seems to offer some relief. I have a large ice pack and I just set my feet on there and wrap my feet in it. And I also put it up on my lower calves it's very soothing. And sometimes I'll rotate heat and ice.

They're definitely is a link between hypothyroidism and B12 deficiency because so many of us have both. There are some people in the thyroid forum that are talking about B12 as well but I don't know if any of them have been over here to this forum to ask any questions.

I also read somewhere, that thyroid medicine makes it hard to absorb B12. But I have no idea if that's true. I did find this website that lists interactions between thyroid medicine and B12. There doesn't seem to be an interaction between thyroid medicine and B12 but it does list other things that do have reactions to them. Kind of interesting. And it's interesting that they put B12 under the drug/vitamin category.

They're calling B12 a vitamin drug. That's where one of our problems coming in, it's categorized as a drug. And that's why we can't get it over the counter.

drugs.com/drug-interactions...

Good luck to you. I hope we both find some relief from our feet and legs.

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