Neurological problems

[JoshRH]

Hi everyone, just wondered if anyone suffered with neurological problems before being diagnosed with hypothyroidism, if so what kind of symptoms was it? Thanks

[shaws Administrator]

There is a list below and you will see that there are several problems which can occur with hypothyroidism. I know quite a few people have been diagnosed with a mental health issue when it has been undiagnosed hypothyroidism.

Those who've had a diagnosis will respond when they read your question.

thyroiduk.org.uk/tuk/about_...

I'd have your FT3 checked alond with FT4 if you are having problems at present.

[JoshRH in reply to shaws]

Yeah I've seen this list, I just wondered if anyone before they were diagnosed had neurological problems, such as twitching muscles, very cold feet, jerking muscles etc thanks

[shaws Administrator in reply to JoshRH]

We've had members in the past who've been incarcerated but it has been due to a thyroid problem. This is a link:

hypothyroidmom.com/when-thy...

[JoshRH in reply to shaws]

I don't understand how this has relevance to neurological symptoms, because I'm aware that underactive thyroid Un treated can cause Peripheral neuropathy symptoms

[pandv in reply to JoshRH]

I was diagnosed Hypo last year by chance due to peripheral neuropathy, linked to ulnar nerve. I gradually lost control of little finger and outer ring finger, pins and needles, coldness then numbness on outside of hand. Went through 10 weeks of physio, it got worse, was booked in for Cubital tunnel op (thankfully for once there was a long delay) in the interim i was blood tested and diagnosed Hypo. Hand sorted itself out quickly with Levo treatment. Op cancelled - phew, probably would have had totally unnecessary operation and whatever long term issues that would have cause. Hand 100% normal now. Also has painful, cold feet, hurt when I walked, like muscle cramp, hand twitches which I'd never had before, these massively improved following treatment and dietary changes (gluten dairy avoidance).

[shaws Administrator in reply to JoshRH]

I've had a thought - have you had B12 and Vitamin D tested?

mdjunction.com/forums/refle...

You are looking to have B12 at the top of the range. we canot overdose on B12. Vitamin D should also be towards the top of the range.

ncbi.nlm.nih.gov/pmc/articl...

[JoshRH in reply to shaws]

Thankyou for reply, yeah I will be going to the doctors tomorrow to check this, thankyou

[shaws Administrator in reply to JoshRH]

Post your results for comments.

[Polaris in reply to shaws]

I have Hashimoto's but recently started to have neurological symptoms of B12 deficiency after two virus infections this year - tingling in tongue, toes and tips of fingers, as well as dizziness, extreme fatigue and blurry eyesight.

Many GPs do not read latest research on B12 deficiency/PA or understand its connection with thyroid disease (BCSH guidelines) and that these symptoms need to be treated urgently as per BNF with injections every other day until no further improvement to avoid permanent damage:

b12deficiency.info/signs-an...

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

[JoshRH in reply to Polaris]

I went to the doctors today, and they said they haven't even checked my B12 because I'm not anaemic? Is this right?

[shaws Administrator in reply to JoshRH]

No it isn't right. anaemia is not the same as a B12 deficiency which could also be due to Pernicious Anaemia. I don't think your have perniciious anaemia but you might be deficient in B12. He should check B12, Vit D, iron, ferritin and folate. Both B12 and Vit D are prohormones and have very important jobs to do in our body. If deficient we can get more problems.

nhs.uk/Conditions/Anaemia-v...

We have to look after ourselves unfortunately. Many doctors take a B12 but if it is low in range they don't bother, when in fact we have to have it towards the top of the range as we can develop other more serious problems.

[JoshRH in reply to shaws]

So I went to the doctors today, my B12 hasn't even been checked because apparently I'm not anaemic, so doesn't matter, what's your thoughts on this? Also apparently in my doctors they don't do tests for my vitamin D levels, thoughts on this?

[Polaris in reply to JoshRH]

I'm not surprised - it's a common misconception by GPs, who have not fully understood the NICE! BCSH guidelines or latest research. Neurological symptoms precede anaemia, which is the last stage of PA/B12 def, or may never appear.

Page 4 of the BMJ research document above:

"It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases treatment should still be given without delay."

I personally gave up on battling for better thyroid or B12 treatment - became too stressful - and now self inject with B12 from Germany.

There is good information on what to do next or writing to your doctor in the B12def. link already given, as well as the PAS forum.

Good luck JoshRH

[Polaris in reply to JoshRH]

Re. Vitamin D3, I take vitamin D3, 5000 iu, with K2, to ensure the D3 goes to the bones and not arteries.

[Nicki24110 in reply to shaws]

I've printed this off to take to my GP today. My antibodies are positive but TSH normal, I'm going for a second opinion

[shaws Administrator in reply to Nicki24110]

I don't know if you've seen this link:-

thyroiduk.org.uk/tuk/testin...

[Pinklady23]

I have hashimoto's and before diagnosis I've had tremor in my hands,cold feet, pins and needles in one hand which was out down to trapped ulna nerve but now confirmed as carple tunnel. Digestive problems, severe migraines....just some of it!

[JoshRH in reply to Pinklady23]

Thankyou for your reply

[beh1]

I still have pins and needles, some feeling of burning in muscles, particularly in morning when wake up, some trigeminal neuralgia and tinnitus ( caused by nerve problems). I did have twitching of muscles in arms, legs and face, especially one eye, but this has resolved as dose of levo raised. I'm hoping all will resolve now I'm on what appears to be a much better dose (t4 and t3 towards top of range). Good luck.

[JoshRH in reply to beh1]

Thankyou for your help, and also thankyou for the reply, really appreciate it

[dang]

I still have muscle twitching that comes and goes. 2 things have helped stress relief and magnesium, when I'm stressed it still comes back.

I did have numbness in certain fingers, would wake up almost every morning with my left hand number, sometimes my big toes would go numb, this hasn't happened anymore since on medication.

Are you having certain neurological symptoms? Some could very well be due to vitamin and mineral deficiencies (or also over-supplementation in some cases). B12 deficiency can cause a lot of neurological problems, have you had your B12 tested?

[dang in reply to dang]

Forgot to mention I had cold feet too, that didn't go away until I started taking T3, levo alone didn't get rid of it (I'm not sure if cold feet is neurological, I'm just adding it because I saw you refer to it in a reply)

[JoshRH in reply to dang]

Thankyou for replying, I'm not entirely sure, I know I've had my calcium levels checked and there fine according to the doctor, I'm off to the doctors on Wednesday so will ask for that, thankyou, also the certain symptoms I'm having is, muscle twitching, jerking sometimes, really cold feet, with prickly sensation, tingling, numbness in arms, also real bad vertigo

[dang in reply to JoshRH]

Yea I have had the exact same symptoms, not bad vertigo but it would come out of nowhere sometimes and I would start tipping over like I was on a boat. Definitely check the B12. The cold feet are probably related to the hypothyroidism, unless you feel numbness there I don't think it's neurological. Do you have thyroid blood results? It's possible you're not optimally medicated. The muscle twitching I have been told by a GP is a common symptom that people have which is not neurological (his words not mine) and he recommended magnesium to help it, it does help. I know a few people who have rid themselves of muscle twitching just with magnesium.

Tingling and numbness is probably neurological. Mine went away with thyroid meds, I don't have any medical explanation for it, just that it happened to me so hopefully it's something just related to thyroid? Low B12 is common with hypo patients so that could be related. Even if you're not deficient in B12 you may still want to supplement to bring your levels up to an optimal range, you might just be low (but not deficient) and your GP would likely ignore it (so keep your results just in case).

[JoshRH in reply to dang]

Yeah I'm going to the doctors tomorrow morning, so will defiantly check my B12 and vitamin d bloods results out, another thing is I haven't actually been diagnosed with hypothyroidism yet, but my TSH was over range back in December, but they tried to tell me it won't effect you, but I have a lot of symptoms, and TSH is possibly even higher now, also I've been told by my friend who is an A&E doctor, that the tests show I have subclinical hypothyroidism and that I should be on thyroxine, so that is what I'm going to try an achieve tomorrow, what frustrates me is that the doctor will go by bloods and there for "your fine" NHS problems

[dang in reply to JoshRH]

Good luck with your appointment, hopefully you have a better experience this time. From what I've read on this forum TSH is at its highest early in the morning, so try to get the first spot for the blood test. If your doctor isn't willing to help you or consider your symptoms it could be wise to try another doctor.

[JoshRH in reply to dang]

Thankyou, yeah I think that's what I will do if she doesn't help, the other sad thing is the doctor who I'm friends with has actually told me that, some doctors are just to lazy and simple don't do things sometimes because they don't want the extra work , which is believable in the way I've been treated

[dang in reply to JoshRH]

Yea that is unfortunately incredibly true, I've had that experience with doctors many times. I'm ridiculously picky about my doctors ever since some truly horrible past experiences, and I find that only 1 in 15 (at best) really does their job meticulously.

[JoshRH in reply to dang]

Couldn't agree more

[JoshRH in reply to dang]

So I went to the doctors, and the haven't even checked my B12 because I'm not anaemic? Is this right, also they say they don't test for vitamin D, thoughts on this

[dang in reply to JoshRH]

Unfortunately I'm not from the UK. I don't know how it works there, but it sounds kinda off... they wouldn't be able to know if you're B12 anemic unless they test it... you might want to make a new post about this and ask members who live in the U.K. for advice. I know that at worst case you can get private blood tests done and many members on this forum order them (I think it's a finger prick test that comes in the mail, I haven't done it so I don't know).

About the vitamin D it could be that it's not covered by NHS? When I lived in Canada the provincial health care didn't cover vitamin D test but there was an option to pay for it. If you got it done you just had to pay $25 before leaving the clinic.

[JoshRH in reply to dang]

Thankyou

[humanbean]

Yeah I've seen this list, I just wondered if anyone before they were diagnosed had neurological problems, such as twitching muscles, very cold feet, jerking muscles etc thanks

What helped me :

1) Getting iron/ferritin/haemoglobin/red blood cell count levels up to optimal.

2) Magnesium supplementation. Personally, I take 300mg - 400mg magnesium per day in the form of magnesium citrate. There are lots of different magnesium supplements and people can choose which one appeals to them most :

naturalnews.com/046401_magn...

metabolics.com/blog/the-def...

globalhealingcenter.com/nat...

3) Potassium. I take high dose B12 every day. In metabolising Vitamin B12 potassium can get depleted. I only take small doses of potassium though - a maximum of 4 x 99mg potassium per day. Potassium is one of those things that is best got from potassium-rich foods in the diet, but I admit I don't do this. This is one of those supplements that should be researched very carefully and taken very cautiously (if at all) because it could have bad effects on the heart. Also, healthy kidneys are required to eliminate any excess potassium.

I haven't been able to eliminate cold feet, but the other things you mention only occur rarely for me now.

[JoshRH in reply to humanbean]

Thankyou for your help I will look into this

[claudiasmum]

Numbness and pins and needles in my feet were the first symptom I had and what led to my diagnosis of hypothyroidism. It is now the main symptom I get when my T3 goes too low and a signal that I need to up my dose.

[JoshRH in reply to claudiasmum]

Thankyou for your help

[Essjay16]

Hi JoshHR.

I have had pins and needles. Severe peripheral neuropathy, tinnitus, muscle /joint pain, disorientation, Jerky muscles, eye twitch for 3 months cold/heat intolerance, heart races. Have NOT been diagnosed yet, my appointment for results is TOMORROW! Can't wait to find out for sure how to get better. Let us know how you get on. Good luck.

[JoshRH in reply to Essjay16]

Thankyou for the reply, sounds like your having very similar symptoms to me, how do you know you have peripheral neuropathy, have the doctors said? Or can you just tell off the symptoms your getting, thanks

[Essjay16 in reply to JoshRH]

The pain became unbearable. This was 3 years ago. I went to the doc and then private for nerve function tests which were normal. So I was given an antidepressant which helps with nerve pain. My pain was so bad, it came and went at any time and I never knew how long it would last. I couldn't style my hair, even cold air blowing across my hand could be agony. The pills gradually calmed it down but made my head feel foggy. I eventually stopped taking them. After lots of research I started taking sub lingual b complex with b12 burst and only now and again get mild symptoms. At its worst the only way I could describe the pain is either a big electric shock in my hand or being suddenly hit from the inside by a hammer. It became horrendous. I actually didn't want to wake up and face life any more. Put me off food and going out as if you had sudden pain and screamed out people could not see what is happening and thought you had gone potty. When my new doc (2 weeks ago) asked for some history of what happened I surprisingly started crying as the painful memories came back! I wouldn't wish it on anyone. I asked the new doc if it was called peripheral neuropathy and he said yes it was!