Loss of sensation in feet and toes, weak arms, ... - Thyroid UK

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Loss of sensation in feet and toes, weak arms, and muscles in legs feel really tight.

NealF profile image
17 Replies

Morning all,

I was diagnosed with a benign multi-nodular goitre in spring. Had a couple of iodine scans and all came back looking ok. The main nodule was about 2cms. Was feeling ok, so was told to come back in New Year.

However the last couple of months have been awful. Pretty much on returning from a perfect holiday to Cornwall, I firstly suffered with headache and tight neck and back muscles. However this did subside somewhat but was replaced with loss of sensation which started in my toes, and is gradually working its way up my legs. All the muscles in my legs feel tight and tweechy, and in the morning my hands can feel very weak. Walking is getting harder, but I am yet to fall, etc.

I've been checked by a neuro, and everything seems ok there. And scans on my back all seem ok.

I've just booked to see endo at beginning of Dec, but I was wondering if anyone has suffered with these symptoms before being diagnosed with anything thyroid related? I've asked my GP today for a test on Lyme, as I'm also worried about this also.

In some ways I hope it is my thyroid - I just want to know what the problem is now.

Any thoughts would be much appreciated?

Thanks in advance.

Neal

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NealF
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17 Replies
greygoose profile image
greygoose

Have you had your B12 tested? Those symptoms sound a lot like low B12. It needs to be high in range - or even over-range. So, if you haven't had that, ask for a B12 test at the same time.

NealF profile image
NealF in reply togreygoose

So my B12 results were 320ish when I looked this morning, which I would have done whilst supplementing, so today I have started the 1000ug tablets from H+B, to see if this helps! Fingers crossed.

greygoose profile image
greygoose in reply toNealF

That is low.

These tablets from H&B, are they sublingual methylcobalamin?

NealF profile image
NealF in reply togreygoose

Its the blue tub of Time Release Vitamin B12 tablets. On the back it says B12 (as Cyanocobalamin). Is it worthwhile?

NealF profile image
NealF in reply toNealF

I also have the mouth spray, which does say Methylcobalamin.......

NealF profile image
NealF in reply toNealF

Think I have just read that the spray is better to use? Does anyone know how long it will take to show results in my legs? Not expecting immediate, just if anyone knows?

Clutter profile image
Clutter in reply toNealF

NealF,

My B12 level doubled from low 300s after 8 weeks supplementing 1,200mcg spray.

greygoose profile image
greygoose in reply toNealF

Certainly isn't. Total waste of money.

Whether or not the spray is better, depends on the individual, but there's no point at all in taking Cyanocobalamin.

NealF profile image
NealF

Yes had B12 and Folate tested which apparently was fine, although I have heard it should be nice and high, so I might check the results later, as have them at home.

The Neuro checked these, and had MRI's to check for MS, but fortunately at the moment it doesn't appear to be that.

Miki80 profile image
Miki80 in reply toNealF

Hi NealF, I'm going through the same thing also had normal CT and MRI scans. Convinced it's MS and too early to be detected as I can't believe adrenal/thyroid issues can make me feel this ill- could be wrong though- hopefully

Good luck hope you get answers soon

NealF profile image
NealF in reply toMiki80

Yes I also worry about that. You get the feeling they just don't want to diagnose until they are 100% sure. The last two months I would not wish on anyone!

Miki80 profile image
Miki80 in reply toNealF

I've had this 3 years on/off weak shaky legs days I can barely stand, blurring vision, headaches, tinnitus, crippling anxiety, constant aches and pains, spaced out drunk feeling

Polaris profile image
Polaris in reply toMiki80

Have you had your vitamin B12 tested Miki80?Very often linked with Hashimoto's:

b12deficiency.info/sign...

You'll see that it is important not to supplement before testing, as this will skew results and make it harder to get diagnosis and treatment,

Miki80 profile image
Miki80 in reply toPolaris

Yes it's high given I have jabs but then so is ferritin which I don't supplement

Polaris profile image
Polaris in reply toMiki80

Did you feel any better after injections? BCSH guidelines and latest BMJ research document state that GPs should be treating symptoms until no further improvement and retesting is not relevant once parental treatment has begun:

cmim.org/pdf2014/funcion.ph...

(Bottom of page 4, under 'How is response to treatment assessed

"Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment,24 and retesting is not usually required."

.............

I'd also recommend Dr Datis Kharrizian's book, 'Why do I Still have Thyroid Symptoms when my Lab Tests are Normal?. He recommends g/f diet as a strategy for healing 'leaky gut', which many researchers now believe is the source of autoimmune disease.

Miki80 profile image
Miki80 in reply toPolaris

I perk up but it's very short lived. I have so many issues/problems I don't think I'll ever be well again

NealF profile image
NealF

Thanks for the replies.

I wouldn't say any of my numbness is with pins and needles. I can feel everything with them, there is just a loss of sensation. Its in my both my legs, particularly near my big toes, and the two small fingers in my right hand.

With it always there, its so hard to ignore, and try to get on with life.

Tremor in my hands has also worsened over the last couple of weeks, but that could be stress/anxiety over it all....

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