I have hypothyroidism diagnosed in 2019 from a blood test with no symptoms that were recognised as such. I now believe, confirmed by advice in this forum, that my levo dose was too low, and have recently succeeded in getting it increased.
At around the same time I developed aching, weakness and numbness in my calf muscles which became a real problem. The muscles were severely wasted. I did not get much interest in finding the cause for some years. However last year an MRI scan identified spinal stenosis. But a follow up nerve conductance studies and EMG confirmed peripheral neuropathy.
In most searches the link between neuropathy and hypothyroidism is described as not well understood and mostly linked to carpal tunnel disease, but the following two links show high occurrence of the kind of neuropathy I have in the early stages of hypothyroidism.
This seems rather important information. I wish I had been aware of it in 2019.
I am hoping that getting my dosage right and my T4 and T3 levels up towards the top of the range along with Methyl B Complex and Vitamin D supplementation may alleviate the neuropathy. The spinal stenosis of course will remain.
Nothing else in the suggested triggers for peripheral neuropathy fits for me.
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Jasper79
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'the link between neuropathy and hypothyroidism is described as not well understood'
It's not well understood because no-one ever bothers to properly investigate the connection. The symptoms and permanent damage caused by insufficient thyroid hormone over the long term has been, at best largely ignored and brushed aside, and at times positively denied.
Yes, there seems to be very little understanding in the medical profession generally of thyroid issues.
By the same token, it has taken me a great deal of time and research with the help of Dr Google to finally interpret my MRI scan results as spinal stenosis.
An earlier nerve conductance test was a complete waste of time with a 2 line letter as the results. The subsequent one at a different hospital was detailed and thorough although 10 weeks wait for results. Better late than never.
Just as doctors think taking a little white pill each day is the panacea to all our problems 😒. I'd love to know if some of my ongoing health issues are due to being low in thyroid hormones for years.
Yes I was surprised by that statement. There is a link with peripheral neuropathy, but I have not found any evidence of a link to spinal stenosis, caused by age related deterioration in the spine.
Symptoms are very similar but origins different.
I have both now confirmed from MRI scans and nerve conductance studies.
I have had big problems with constipation but not been successful in finding a cause I did have concerns about bread but have not found convincing evidence of gluten intolerance.
I have spinal stenosis with slight canal indent and nerve compression also huge amount of hypothyroid symptoms (goes it fits and severe bounds, not constant) but bloods ok.
I started getting a heavy ache in my calf muscles while walking back in 2019. I also had numbness and pins and needles type feelings in feet and calves, feet feeling cold even when not, and also actually being cold. It was some years before I managed to trigger any interest from GP when I suggested it might be peripheral vascular disease after my wife read about it in a magazine.
I was tested for this and there was no issue there, so I was referred for a nerve conductance test. This showed issues, but the response from the neurologist was dismally inadequate (to the horror of a neurosurgeon seen later). After further discussions with my GP, I had an MRI scan which showed spinal stenosis – degeneration changes with nerve impingement at L3-4, L4-5, and L5-S1.
My NHS neurosurgeon ordered a new MRI (could not access the existing one- different hospital etc!) and new nerve conductance studies and EMG. I got the results of the latter this month – they state – “findings are highly likely to support chronic sensor motor axonal large fibre peripheral neuropathy of unknown aetiology”.
These were reviewed in a follow up appointment with a private neurosurgeon (NHS appointment had just been postponed from late November to February). He interpreted these, as I understand it, as being caused by peripheral neuropathy from other causes than spinal stenosis and made a referral for me to a NHS neurologist (not at hospital of original one thank goodness). I have had a text message about this in the last few minutes saying they have my referral but warning me that they have long waiting lists – surprise…….
I have an underactive thyroid which I now believe to have been under-medicated since diagnosis in 2019. There is a strong link with peripheral neuropathy right from the early stages of hypothyroidism as shown in links in my earlier post. As noted there, I now have an increased dose and, ever optimistic, believe it may ease the neuropathy.
There is a research article illustrating a case where a diagnosis of spinal stenosis turned out to be neuropathy caused by an underactive thyroid and was resolved on treatment of the hypothyroidism.
Thank you! The other problem with hypothyroidism is when it varies hugely on suffering and symptoms and bloods don’t get taken till it’s calmed. Symptoms should be considered but NHS only go on bloods and hormone health is still widely not looked after properly.
Where are you at now with nhs? I had an another spine mri which showed worsening spinal stenosis and two lumbar areas of lumbar and sacral nerve impingement. Lumbar and sacral impingement causes leg and muscle pain, also hip area, with feeling of weakness. Often feel like I am vibrating inside..wierd.
As for cervical stenosis…just a flipping nightmare from my point of view.
Very interesting been said that thyroid issues can create spinal stenosis…that’s likely because hormone issues effect bones, energy, hear rate and metabolism, especially when ageing.
I am finally being trialled on hrt, based on symptoms rather bloods, to see if it helps me. However, if turns out to help it won’t take away the damage done over at least 15 years plus where nobody has done anything to at least try and help.
I’m nervous re hrt but worth a try..got an amazing hrt nurse specialist so 🤞🏻.
As noted earlier, my view now is that the major part of my problem with lower leg pain and numbness etc. is due to peripheral neuropathy separate from the spinal stenosis. It is now about 5 weeks since my levothyroxine was increased from 75 to 100mcg pushing my T4 up to 21.7 (although measured 3 hours after taking levo). There has been a noticeable improvement in my neuropathy over that time, so I am fairly sure that the under-medicated hypothyroidism was the biggest part of the problem.
This week I had a follow up from NHS re being on a waiting list for neurosurgeon appointment which was postponed for another 3 months. It was the slowest piece of software I have ever experienced. I took myself of the list as I will not pursue spinal surgery. I can live with my situation and do not see the stenosis as the man issue.
My Osteopath is certain I have nerve damage (mri said nerve compression /impingement on both lumbar / sacral and cervical). Thats what happens when these things are left apparently. NHS are useless with this, they play down all and my area is minimum 45 weeks now even for initial appointment 😯
Neurosurgery appointments on the NHS seem to have some of the worst waiting lists. I did see a neurosurgeon privately a couple of times to get a better understanding of the MRI scan and NCS and EMG results - expensive but helpful. He referred me to an NHS neurologist, but so far I have only had an acknowledgment of the referral and a warning that it will be a long wait.
It’s really bad on waiting times now for sure. Thing is with private in my area is most Consultants are same NHS Consultants..the only difference is they give a little more time .
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