Feeling so down......

[Twitchen]

I am waiting to see a neurologist (have been for nearly three months now!!) for tingling in arms, hands, legs, feet and face.

Last couple of days I have been feeling so dizzy and off balance, which makes me feel really sick. Also feels like there is pressure in my neck/back of head.

I have tried B12 supplements and ionic magnesium in the hope that it would cure my tingling, but it is still just as bad.

I am currently on 50mcg levothyroxine and 20mcg liothyronine. The T3, which I have been trying in varying combinations with T4 for the past ten months or so, hasn't really made me feel any better.

Does anyone else have these symptoms? It is all so scary.

[Hennerton]

Has your B12 actually been tested? I think you should ask your GP to do this, together with folate, serum iron, ferritin, and VitD. Low levels of any of these can cause strange symptoms. They all need to be high in range. Unfortunately your B12 will not be accurate if you have been supplementing but it is still worth seeing want it is currently.

Low iron can definitely cause dizziness and feeling faint. When you have the results, post here with reference ranges for comments.

[Twitchen in reply to Hennerton]

GP did blood tests when I first went a few months ago and I was told everything was fine, all normal within range.

I did actually ask about some of the numbers and B12 was 268, folate 10.8, potassium 5.1. That was all I managed to get as printer wasn't working and she had to write them down.

Following reading a lot of information about B12 on here, I started taking Solgar sublingual methylcobalamin. Have had two bottles so far of the 1,000 mcg nuggets and take one per day.

Also started taking magnesium in water (Mega-Mag) - one syringe per day, which I think is about 10ml.

Am a bit nervous about overdosing on supplements

Also have started getting hot flushes again quite frequently, despite using oestrogen gel.

So just feel everything is going wrong at the moment.

[Marz in reply to Twitchen]

Only about 20% of your B12 blood result would be available at a cellular level - where it is needed.

b12deficiency.info/signs-an...

Looking at the above link at the conditions connected with Low B12 - you will see so many of yours. You cannot overdose on B12 as you will pee out any excess. You may still have absorption issues with the sublingual - is it is not all absorbed beneath the tongue. You may need injections. You do not mention your Iron or Ferritin result. With a B12 result that low other things should have been checked. Read other posts on here about B12 ....in Japan the lowest level is 500 up to 1300 and anything under 500 will cause neurological symptoms. docs just not aware. Sally Pachlok - who wrote the book - Could it be B12 - says that the result should be over a 1000 to prevent cognitive decline in the elderly....

I think you need to discuss this further with your GP once you have read and gatheres information from the above site - and of course there are others. How was your VitD ?

Never accept - fine - from your results - always ask for copies and post here. Often being normal or in range is not enough for someone with Hypothyroidism. Do you have Hashimotos ?

Hope you soon feel better - it is possible - but the road can be bumpy

[rosetrees in reply to Twitchen]

Just to add to what Marz said. Get into the habit of always asking for print-outs of results, with ranges. I can tell you from personal experience that it's quite amazing how a doctor's idea of what's "fine" or "normal" changes once s/he knows you will see the results.

Take a look at this nlm.nih.gov/medlineplus/enc... (a site your doctor can't ignore) where it says that "Older adults with vitamin B12 levels between 200 and 500 pg/mL may also have symptoms."

[sazzyb in reply to Twitchen]

Hi Twitchen, 268 is low and should be around 900. (The bottom of the range in Japan is 500.) I recently spoke to a woman who was bed-bound with a 'normal' B12 reading of< 500, also another woman with neurological symptoms with a B12 of <485. My B12 result was about the same as yours, I have lots of similar symptoms. When I told my GP that I wake in the mornings with numb toes and feel as though I'm wearing ankle socks he told me to keep an eye on them. What I should have done was said no, you keep an eye on them starting from now I need some help, but as I have other stuff going on as well I just left it for now. I'm using the B12 5000mg patches and they are definitely helping (you cannot overdose on B12.) The patches last for 24 hrs and they recommend 1 a week but I use 3 a week though I'd use them daily if I could afford it.

[Hidden]

Hi twitchen, could this be restless leg syndrome? Not as daft as it sounds as it does not only affect legs nut any part of the body.i have it in legs, arms and shoulders, handscand feet.Do you feel the urge to move to help lessen symptoms? X

[Twitchen in reply to Hidden]

The symptoms are far less when I am walking and standing, they are worse when I am relaxed - especially in bed - which seems crazy to me, surely lying down should ease all tingling symptoms.

[sazzyb in reply to Twitchen]

No, I too feel my symptoms when I relax, they are much worse when in bed. Maybe because we have nothing else to focus on, I honestly don't know.

[Hidden in reply to Twitchen]

This is typical of restless leg syndrome, suggest you look up the criteria Twitchen x

[Twitchen in reply to Hidden]

Thanks I will definitely do that.

[Hidden]

I had similar symptoms. Turned out to be pernicious anaemia. I now self inject and am doing fine. Supplements dont get absorbed if u have it, you need injections

[Hidden]

Btw, nhs tested b12 and fobbed me off with fine. I went private to get p anaemia diagnosis. Nhs wad useless, but what's new

[Twitchen]

Thank you all for the very helpful replies.

I shouldn't think that my GP will let me have any more blood tests at the moment with them having been done so recently and of course, to their mind, the results all being within normal range.

It is so frustrating about getting the actual numbers. I like to know my thyroid test results, but the only way I can find out is to actually make an appointment and see the doctor, which seems a complete waste of an appointment.

Perhaps I should try upping the amount of B12 to 2000mcg? Does anyone else take magnesium? Just wondered if they had seen any improvement through taking it.

[sazzyb in reply to Twitchen]

5000mcg would be better. I believe that up to 80% of the B12 in our body is inactive so levels need to be optimal. I take 400mg of chelated magnesium every night at bedtime.

[Twitchen in reply to sazzyb]

Do you feel a lot better through taking 5000mcg of B12 and the 400mg magnesium? I haven't hear of chelated magnesium, is that better than the liquid form?

Just wondered what symptoms you take these for - is it tingling?

[Neijam]

I also get these symptoms so it cant be just a female prob ,the things that showed up on .my private thyroid test from genova was rt3 problem along with high antibodies ,i got a tt 18 yrs ago for graves, i was def in zinc and magnesium ,been suplementing for a while now and still have twitches ,shakeyness, head and neck pressure ,tingling , my adrenals are also low in morning ,report attached stated ,consistent with thyroid imbalance,i have decided to switch to ndt using the sttm protocol.Aftet that ,i dont know what else to try other than t3 only .Its a never ending trudge.

[Hidden]

I have extreme tingling too with neuralgic pains in my feet and legs and pins and needles and burning in soles and palms. I do have a diagnosis of Rheumatoid Arthritis and hypothyroidism (mild Hashi's) but I'm off all RA drugs now because of intollerances and no sign of RA.

I take AdCal D3 plus 4000 IU D3 capsules, B12 sublingual, magnesium and B complex (only started this a week ago. Apart from the AdCal D3 none of it appears to have made any difference and the small fibre neuropathy/ Raynauds/ massive tingle with nerve pain is only worsening slowly. The things that help me more just now are Meloxicam 15mg (anti-inflammatory) daily and Anitriptyline x3 per night but I have had to increase the dose recently and if I stop the pain in my feet and shins is really awful.

Like you I'm waiting to see a neurologist but have been warned it could be 3-6 months. I have mild dizziness, Arrhythmia and take 100mcg Levothyroxine. I'm trying all the vitamin and mineral supplements recommended by people on here and my Vit D has gone from 28 to 59 over the winter. I did challenge my GP on this and get the AdCal D3 on prescription.

Serum B12 was 380 last time it was checked which is well within normal range but I thought I would suppliment regardless. I agree about NHS normal ranges probably being wrong but if you are like me and don't want to keep on challenging your GPs and alienating them then it is probably best to read up and get private tests for anything your doctor refuses to take.

I've been advised by my GP to take Pregabalin or Gaberpebtin for the nerve pain but am not keen just now and hoping I can wait until I've seen the neurologist. Twitchy

[Twitchen in reply to Hidden]

Thanks Twitchytoes, it certainly is a minefield. GP offered me Gabapentin, but my OH was on them for a few months and they made him feel awful, so I declined. I have a fear of drugs unless absolutely 100% necessary (i.e. the thyroxine). I don't want to alienate my GP as he has been pretty good with OH and all of his problems.

Does anyone know if T3 could possibly cause tingling sensations? Just a thought. I might cut T3 out and just take the T4 for a couple of months and see if that helps.

[monkey65]

Just a thought- the symptoms you describe also sound like calcium deficiency. Perhaps you should check this too.