I have recently been suffering symptoms of numb feet, legs hands and weirdly, pelvis. I can’t feel a thing except a very heavy weight deep in my pelvic floor (similar to just prior to childbirth!) I can still go to the loo ok but no feeling there at all. I’ve had an MRI scan and there’s no compression.
Is this a symptom of hypothyroidism? I have had my dose increased but I am wondering if I should be concerned it’s something else as my GP said she’d never come across it before. Suspect I’m also B12 deficient. Thanks for any insight!
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Cazza0104
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No - the numbness crept up my legs early on and kept going! I have a neurologist appointment in January but I am scared that I will lbe numb permanently. I am trying to get private Vitamin B injections to see if this helps.
I did read your last post, and all the replies there reflect those with b12 issues sharing their similar experiences. B12 deficiency can indeed be pretty extreme.
I’ve never had b12 issues but as Fancy says below, it’s not common to hear about numbness in the pelvis.
I am also not in the UK, but have read this board long enough to think that maybe you should try to short circuit the long wait for neurology with a visit to A&E if you’re really worried.
Others may come along and give totally different advice.
But from the outside, the idea that your entire pelvis is numb… that’s not something I’ve read about here/heard about. A month is a long time to wait if this situation is not getting better or is getting worse.
Hi - I did go to A&E a week ago and had a lumbar MRI but it came back normal. B12 also tested. I’m low according to the rest of the world but normal in the UK - hence looking for private injections, I am now wondering if it’s MS but wouldn’t this also have shown on the MRI?
Before I was diagnosed Hypo, I would Google endlessly all my symptoms and came up with all these ideas about what I was sick with.
At some point I was convinced I had MS. At others times I thought I had a brain tumor because of the headaches, Reynauds because my hands would turn blue and numb, and there were more I just can’t remember now.
As it turns out I am garden-variety Hashimotos hypothyroid. And underactive thyroid can make you feel like you’re dying.
As for you, your thyroid numbers are horrible and your b12 is too low. You’ll need to address both of those methodically. They are absolutely causing some symptoms.
However… progressive numbness - whatever the cause - is urgent. I am out of my depth here, but after a little googling, i would ask if the MRI was done with contrast? It’s needed to pick up more subtle markers. Maybe a brain and cervical mri is in order as well if it puts your mind at ease.
It could be something or it could be nothing - but you wrote the words “ scared you will be numb permanently.”
You are the only one living in your body… but objectively those words reflect that deep down inside you know something is not right.
You are doing well advocating for yourself. You just need to keep it up. No one but you will fight for you like you need except you. Whether b12, thyroid or something else, keep pushing and don’t wait.
Ps. I only know what you’ve written here, and don’t know your whole story, so take it all in that context!
Thanks so much for your response. The earliest treatment I will get is via the private neurologist in Mid-Jan who will hopefully do her own investigations if I am still numb. I have to wait now as I’ve done A&E (twice!) and the NHS neurologist is a 5 month wait!
No there’s no limit but they’ll see I’ve already been assessed for any necessary emergency treatment and refer me to the NHS neurologist instead (5 month wait..).
Lot's of aesthetic beauticians do them, but shop around, it can be pricey. It's a good way to get started, but most of self inject. Much cheaper.You might find it helpful to join some of us over on the PAS section and post your B12 results and symptoms. As here you'll get lots of advice, information and support.
Thanks - I will. I’ve found a great nurse who will do them. They are pricey - £195 for four but she’s coming to my home every alternate evening so very worth it if I feel better and I’ll check out self injecting for the maintenance doses.
Goodness, I never paid more than £15. SI costs around £2 a jab.Be aware that symptoms can feel worse before they get better.
You do eod for 2 weeks or until no further improvement is felt, then every 2 or more usually 3 months.
It can take a while to feel any difference when you start, so don't be too quick to go to NHS recommended maintenance. I'm 12 months in and still daily or eod, which could well be my maintenance regime.
Agree Cazza with Big Blue keep an eye on spinal issues - this could point to some displacement that would need to be looked at - I would say that is the first point of call then follow on with others. Be careful until you know no lifting or anything that might exacerbate symptoms wherever they are coming from.
Numb legs, feet and hands could well be B12 deficiency. Never seen pelvis mentioned. They really should be trying to help you find out what's going on with this. It might also be a thyroid hormone deficiency. Do you have recent blood test results to share with us?
“You are the only one living in your body… but objectively those words reflect that deep down inside you know something is not right.“You are the only one living in your body… but objectively those words reflect that deep down inside you know something is not right.”
So right! You have lots of good advice on here so try not to get disheartened and keep going because it’s your body and you know if something doesn’t feel right no matter what you are told. Oh and don’t let anyone try to give you antidepressants because you’re ‘depressed’.
No pain whatsoever in feet, legs or pelvis- just numb. I had carpal tunnel and numbness in both hands which has almost completely gone after just 2 days of increased Levothyroxine but no difference to feet, legs and pelvis yet. It all started 3 weeks ago.
Hi not sure if this helps but I had awful tingling up arms legs across face and then chest. Terrified. Feet became numb. Told my B12 in range but advised to take supplement to boost if I thought it could help. Fought to get levo raised (successfully) but took sublingual b12 drops (under tongue) and ate home made liver pate for folate - after being told on here that you need both. Symptoms greatly reduced after a week and I'm now fine. But needed both levo raised to good level and the supplements to address.
was just reading this article on inadequately treated b12 deficiency ~ the lady in question developed bladder and bowel incontinence in later stages : msn.com/en-gb/health/other/...
Hi there sorry you are suffering so - awful for you - pelvis could be an adrenal gland response as you are 'not right' and adrenals trying to help - can you try to take a good quality Vitamin C supplement it might help. The other symptoms could be severe B12 problems and if thyroid not 'right' then B12 and many other supplements including zinc and magnesium are dragged from the body to prop up the thyroid to keep you alive - I know it happened to me and I was so low on these vitamins and minerals I got a call from the lab to go out and buy the supplements asap. Hope this helps.
This makes perfect sense! I am starting a loading dose of B12 injections from tomorrow for a week followed by maintenance injections fortnightly. Doing everything I can!
That's good - keep on at them all who are saying all OK - you know you aren't - I did the same took me 15 years unfortunately and a load of damage done cos I was not given the thyroid hormone it needed and I am still suffering because of it - spent thousands of pounds even private medical but didn't help all relied on a blood test that is now shown to be inadequate - but keep an eye on your spine too - just in case it is a nerve problem - glad you are going to see a neurologist ! Keep in touch let us know how you get on because we will all learn from your situation although that isn't any comfort to you at the moment I daresay - best of luck - keep strong !
Cazza - when I was very poorly and seeing private medical people I would phone the consultant's secretary and tell them my symptoms and ask if the appointment could be brought forward - I am sure she would do all she could to 'diary push' to get you in as your symptoms could be considered 'very urgent' !
No but apparently my chest and face being affected was rare - they were going to start other investigations but wasn't needed after advice from on here. I hadn't realised that I wasn't absorbing through the stomach due to low stomach acid as levo low and I'm poor converter. Hence I used chicken liver pate for folate as it is such a good dose - I could only afford one sublingual supplement. I felt so much better so quickly it was amazing. I actually have a hypertonic pelvic floor (over tightened and all the wonderful things that does to you) so being numb there would have actually been a relief! To help with the pate I view it as a medicine and found that you can freeze it too, although it tastes better fresh.
Hope you get a solution - being worried (perhaps anxious - I was horribly) can really exacerbate things too so I found relaxing, having a good plan of addressing things, being honest to those around me about how I was feeling (having group on here really helps) all helped with that. Best of luck!
Have you had an M I of your spine, you may have improvement if the Cauda Equina. If you lose control of your bowels or bladder it's a medical emergency and needs surgery within 48 hours or it's permanent.
I have not read all your replies to others so apologies if asking what’s been already addressed.
I assume blood tests are all ok and was done beforehand re mri?
Was this a full Mri scan reason I ask is I did have a disc bulge on my Thoracic spine but I had full spine scan which also showed degenerative disc in cervical and lower back also (pelvis not done) . This Thoracic disc hit my spinal cord gave me paraplegic shock, I only turned over in bed so woke like this …I dragged my legs for next week or two and realised couldn’t go to toilet and weirdly is how I found I had hypothyroidism and coeliac disease through lots of tests as to why happened … this situation did also give me numbness afterwards and various burning tingling sensation, which only resolved after B12 my levels were in great place mine were extremely low just double figures in 2012 and I need to be well above 500 mark or I get slight symptoms and restless legs.
I expect they’ve mentioned Cauda equina syndrome so won’t explain that. Most medical professionals usually ask and give examinations re this condition when describing back pain and problem.
Did they do a pelvic ultrasound that can pinpoint various problems and mri your pelvis they can do one with an extra guided imaging girdle type of thing and they slow your bowels down for imaging intravenously with buscopan to see if any gynaecological problems eg large gynaecological cysts or fibroid pressing elsewhere causing this sensation may show up on ultrasound too.
Lower back doesn’t always cover pelvis believe it or not 🙄 well in my experience it has taught me that it doesn’t always… if you were in mri around 20 mins I suspect it wasn’t done it takes about that per area. I have had numerous orthopaedic mri scans and only once due to being written down was pelvis done. I was in 40 alone for pelvic scan re checking gynaecological issues more recently.
If nothing that orthopaedic consultant can suggest or do or hasn’t revealed anything I’d look to gynaecology area … if B12 iron levels which assume is ok.
Most orthopaedic have basic knowledge of neurological issues but still good to see neurologist if nothing else is apparent.
Another area is bowels etc it’s actually quite amazing how squished they are in women if any gynaecological problems… this still can happen at pre and post menopause. I’m experiencing various gynaecological problems and it triggers my bowels at times pressure on nerves as many in the pelvis … ironically as have coeliac disease and was asymptomatic re digestive issue before perimenopause and or the adenomyosis and endometriosis has caused few hiccups with IBS like symptoms now 🤦🏻♀️
If a trapped nerve they can cause all manner of problems and even sensations in other areas not related….so best it’s all checked out but could clear up as quick as you’ve got it … I had seen GP had dozens of blood tests whilst waiting for results and signed myself in to see physiotherapy and my condition triggered alarm bells for them they wouldn’t touch me without MRI and that started my whole autoimmune journey afterwards…I’ve had various muscular skeletal symptoms and most likely are nerve related that are triggered… I have only seen an orthopaedic who has neurology as his specialty re the orthopaedic area, not a neurologist.
It can be very worrying but do keep on at them to find why.
Thank you! I have an appointment with a neurologist on Jan 17th so I’m hoping all these checks will take place. My B12 is 250 so having injections in the meantime!
Glad to hear make sure they do loading dose then continue it - took a good year for me to get better re symptoms regardless of levels saying they were ok.
Lower back doesn’t always cover pelvis believe it or not 🙄 well in my experience it has taught me that it doesn’t always… if you were in mri around 20 mins I suspect it wasn’t done it takes about that per area
That’s absolutely right. Have written about this elsewhere on here today. Lumbar MRI shows some of S1 if you’re lucky. 20 minutes.
I just had a EMG test on my right arm because I developed a numb arm out of no where. The test revealed carpal tunnel and a pinched nerve from my neck. Prior to test I had 2 MRI’s one on my neck and one on my shoulder/arm and the MRI didn’t pick anything up except for 2 tears in my rotor cuff. I would ask Neuro for EMG test
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