Placebo or true effect: Dear all I posted about... - Thyroid UK

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Placebo or true effect

ritecharm profile image
36 Replies

Dear all

I posted about my problem with neurological symptoms of tingling in hands and feet few days back. As many helpful people advised here I started taking b12 though I am waiting for my blood test results that my neurologist took. My question is I started yesterday on sublingual vitamin b12 that says on its pack as fast acting. It's 1000 micro gram and I have taken about 500 microgram but already I find my symptoms better especially in hands. Does b12 acts so fast or am I just experiencing some pleasant placebo effect :-)

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ritecharm profile image
ritecharm
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36 Replies
Marz profile image
Marz

For some people the effect can be speedy - especially as you were very low before I believe. Also take a good B complex as B12 works in the body with B9 or Folic Acid. Keeps all the much needed B's in balance.

Are they lozenges you keep under the tongue ?

ritecharm profile image
ritecharm in reply to Marz

Hi Marz. Yes I am keeping them under tongue. I am taking a b complex too. My blood results probably will show again within "range" but I will go on taking them

Marz profile image
Marz in reply to ritecharm

Once on B12 supplements tests will be a waste of time and the results skewed :-( Save the dear old NHS some dosh and skip it :-)

GosportNancy profile image
GosportNancy in reply to Marz

Good thinking. Batman....I see what works and then stick with it :)

SmallBlueThing profile image
SmallBlueThing

I started taking multi vitamin/mineral "horse pills" containing 1000 mcg methylcobalamin in July last year when I had burning soles to my feet. My serum B12 was 360 ng/L (220 - 700ng/L) and the problem quickly resolved (couple of days?), to the seeming disbelief of my GP, who had arranged tests but nothing else.

I ceased taking the pills early this year, as unsure of the wisdom of supplementing D3. Pins & needles in feet started in July, I left it for a month and re-started the vit/min pills in August. This time it's been slower and there's still a bit going on a month later.

I've had a feeling of glass splinters in my fingers, due to low calcium.

bluebug profile image
bluebug in reply to SmallBlueThing

If your vitamin B12 was low you need to continue supplementing B12 for life unless you can find out why it was originally low and fix that issue. This is because in a year or so you will become low again.

When you are on a maintenance dose you don't need to take so much of the vitamin however it is a good idea to take a good B complex so all your B vitamins are balanced.

SmallBlueThing profile image
SmallBlueThing in reply to bluebug

Thanks. I was working under the assumption that my dietary sources were much improved.

bluebug profile image
bluebug in reply to SmallBlueThing

I wouldn't make that assumption unless you are vegetarian/vegan and suddenly realised you were not taking enough B12.

BTW myself and quite a few other people I know ended up with pins and needles in hands, feet and other random places due to vitamin D deficiency. Your body has to keep your calcium levels sufficient otherwise you would end up with more serious issues.

SmallBlueThing profile image
SmallBlueThing in reply to bluebug

I was a vegetarian, with 270 ~ 360 ng/L (220 - 700ng/L), from dairy and Marmite. Now also eating liver, fish, shellfish.

My serum calcium fell while supplementing D3. Calcium was back in range, in June. Despite sunshine, from the feeling in my fingers, I think it's dropped on a few occasions since then.

I thought Conn's syndrome might be the explanation, but I haven't got that. High cortisol may be the reason, but I "failed" a test. However, I may have a cyclic problem with cortisol.

SlowDragon profile image
SlowDragonAdministrator in reply to SmallBlueThing

SmallBlueThing

Are you gluten free? If you have undiagnosed gluten intolerance, this can be cause of hidden stress.

Adrenals can be affected by low B vitamins too

SlowDragon profile image
SlowDragonAdministrator in reply to SmallBlueThing

With Hashi (or most autoimmune disease) we are more likely to have leaky gut and poor gut flora and bacteria. And possibly low stomach acid too

So it doesn't matter how good and varied your diet is, your not getting all the nutrients from it

abby3216 profile image
abby3216 in reply to SmallBlueThing

Hi small...

thank you for posting about your feet and methylcobalamin. May I ask if they were ever cold or icy but then hot too? Went to the doc today for this issue. I am already on methyl b12 500 mcg but she increased that to 5000 mcgs today.

SmallBlueThing profile image
SmallBlueThing in reply to abby3216

Years ago I used to enjoy having my feet warm up after my evening meal and a day of them feeling clammy and cold. I still regularly have a low daytime body temperature, but manage to hit 37C at night.

Currently, I'm taking Nifedipine for hypertension. It's also used for Raynaud's, and I can see the better circulation and my hands and feet are always comfortably warm now.

abby3216 profile image
abby3216 in reply to SmallBlueThing

ok thank you. Just don't want to take more prescriptive medications if possible. Thank you for answering about the feet. Glad its working for you.

SlowDragon profile image
SlowDragonAdministrator in reply to abby3216

abby3216 - are you also taking a good quality vitamin B complex?

Usual advice on here is to take one as well if supplementing B12

"All the B's need to work together"

I came at this from the other way around. Started on the Vit B complex - due to "burning" feet. A week later started the B12 - due to pins & needles

abby3216 profile image
abby3216 in reply to SlowDragon

My doctor has me on just the two methylated B vitamins. folate and B12. Can you suggest a brand of a complex? I really appreciate your kind advice.

SlowDragon profile image
SlowDragonAdministrator in reply to abby3216

most on here seem to take either Thorne B complex or Jarrows optimised B complex (They both contain folate, rather than folic acid.)

I have Thorne - not tried Jarrows, but might do at next re-order, especially as I happen to have some Jarrows B12.

I don't know if you would then need to stop taking the folate - as that is also in the B complex. Might then be taking too much..I think you would have to check with your doctor

abby3216 profile image
abby3216 in reply to SlowDragon

Thank you so much!

in reply to SmallBlueThing

Burning feet is also a symptom of B 5 deficiency, so if you take the B complex with the B12 that might play in.

SmallBlueThing profile image
SmallBlueThing in reply to

Burning feet get a mention in this article: en.wikipedia.org/wiki/Panto...

My supplement has 25 mg, which the label says is 400% of RDA.

My burning soles last year came along after I'd been supplementing D3 alone, which looks the same as SlowDragon 's experience.

SlowDragon profile image
SlowDragonAdministrator in reply to SmallBlueThing

SmallBlueThing

Multi-vitamins usually not recommended on here. They often contain iodine - NOT any good for Hashi

Plus often cheap versions of ingredients

Have you had levels of Vit D, folate, ferritin and B12 checked before you started supplementing

If taking vitamin D we need to check levels before start and at least twice year whilst taking. We can not get rid of excess, so need to keep an eye on it

SmallBlueThing profile image
SmallBlueThing in reply to SlowDragon

I can't handle looking for them in a shop like H&B, so chose at great length from an eBay seller. No iodine -- already had problems from an Inadine dressing,; eating samphire etc.

Spent £40 which was cheaper than well-known alternatives, but not too cheap e.g. contain methylcobalmin. Horse pills though, not a spray.

From fourteen months ago, when only taking D3:

Serum vitamin D: 65 nmol/L

Serum folate: 11 ug/L (2.6 - 17.3ug/L)

Serum ferritin: 85 ug/L (23 - 540ug/L)

Serum vitamin B12: 360 ng/L(220 - 700ng/L)

SlowDragon profile image
SlowDragonAdministrator in reply to SmallBlueThing

SmallBlueThing

Your ferritin was mega low.

B12 & D both needed improving. Folate borderline, but if you were taking B complex should have improved

Been tested more recently?

SlowDragon profile image
SlowDragonAdministrator

According to this link, the "burning" sensation on soles of feet is actually caused by low B5 - often revealed/starts after beginning supplementing for low vitamin D

drgominak.com/vitamin-d-hor...

I have had this burning feet and very sore heels too. (Plantar fasciitis) This all began about a month after starting vitamin D supplements (quite high dose - 6000iu daily) This high dose is only very slowly increasing the vit D result.

I added good quality Vitamin B complex last week (Thorne's) - within 48 hours the burning had started to fade.

More interesting, after a week on B complex, pins & needles all over started, assuming this is low B12, (revealed by supplementing B complex?) Just added b12 oral mouth spray by Better You.

All my recent BH blood tests during last 18months showed very high (often above range) B12 and right at top of range, folate UNTIL I started to correct my low vitamin D. Fallen slightly in last test.

My vitamin D never appeared very low (lowest was 33) BUT I have just finally been diagnosed with significant gluten intolerance/ possible coeliac. I think, with gluten intolerance, the vitamin D level can, in reality, be significantly below the test figure (due to low nutrients across the board)

in reply to SlowDragon

Snap on the pf, Slowdragon, thanks to your earlier post I am on B5 and I think it may be helping more than the feet. Also have v severe gluten intolerance. One site suggested B5 helped with low stomach acid. I think that could be true.

Oh how I hate limping and burping my way through life!

SlowDragon profile image
SlowDragonAdministrator in reply to

So are you just taking B5?

Or a good quality B complex?

Advice on here from the "B experts" and from that weblink, is to take a B complex, as all the B's "need to work together"

I am taking Thorne. Other one often recommended is Jarrow.

in reply to SlowDragon

I've got lots of separate expensive Bs at the moment so I am taking a handful of different ones to use them up, but I will get a good B complex when I'm through them.

Just off to look at your previous posts to see if we have anything else in common.

ritecharm profile image
ritecharm in reply to

Hi my symptoms are neurological. Tingling, vibrations in hands and feet. Some crawling sensation on the scalp. Neuro exams including nerve conduction studies normal. Have hashimotos for three years and recently tsh had gone high at 12.6. GP increased dose and tsh around 5 and maintaining the dose. Neuro thinks it's all stress anxiety related yet has taken blood tests to check ft3/ft4 and b12. That's my issues just now but I had also suffered in past with digestive issues like burping and have a diagnosis of GERD

SlowDragon profile image
SlowDragonAdministrator in reply to

See my profile page ....usual long and sorry tale of complete mismanagement.

In 23 years not one GP or endo tested my Vit D, b12, folate or ferritin.

Didn't start to get sorted till joined here & got BH blood tests

My GP even told me, just yesterday, "oh I always check a patients B12 & vitamin D" ........ I didn't bother to point out that in 8 years I'd been his patient he'd never once checked mine!

in reply to SlowDragon

A lot of posts abt plantar f say they have just discovered they are D deficient and it went away with D. So I guess your D deficiency might be the cause of yr pf, maybe along with b5 deficiency. Burning feet as a result of B5 def can't be a coincidence.nIf D deficiency causes weak muscles, that in itself could trigger pf, the weak core stability, the dropping arches putting undue strain on the underfoot ligament.

Hmmm. Continuing to take D with the Bs is clearly the way forward, whatever.

Like u I have a child who is gluten intolerant. Am now trying to reduce all carbs to help the reflux, but it is v difficult to have such a restricted diet.

Good luck, let us know what works, thanks again for the ref.

foxglove profile image
foxglove

Would you be kind enough to tell me what brand of sublingual B12 you are taking? Thanks

ritecharm profile image
ritecharm in reply to foxglove

Hi. I live in Germany. I bought taxofit (fast action). It's 100 microgram and recommended dose one per day and I am taking almos five. Tomorrow I will have my blood test results but don't hope much as they may still be in range.

SlowDragon profile image
SlowDragonAdministrator in reply to foxglove

After a week on Vit B complex, I have just started B12, as since improving the other B's low B12 now been revealed (non-stop pins & needles)

Using "Better You" Vitamin B12 oral mouth spay. Seems brill.

Four sprays a day = daily dose. Plus side with this - very quick - just one quick squirt under tongue and can spread the four doses through the day 😃

Widely available - inc H&B who have offer on at moment

Yesterday I made mistake of taking all 4 sprays at once - cured the pins & needles super fast, but must have also altered/lowered stomach acid. Stomach ache & burping away all afternoon 😟

Spreading through the day as four seperate doses seems to be very good and no tummy issues

Slept like a baby, and pins & needles not returned 😃

I already use the "Better You" oral vitamin D mouth spray - for me this is so very much better than any that have to be absorbed via gut (I obviously don't absorb much in my gut due to gluten/leaky gut/low gut flora etc etc )

foxglove profile image
foxglove

Thanks for reply I have used the B12 spray but all four squirts at once, perhaps too fierce as I too had aches and burps. Will try again being gentle on me ! Going to H&B this afternoon as I usually stock up when offers on esp. of the dearer items. not a fan of their own brands however

, but each to her own

SlowDragon profile image
SlowDragonAdministrator in reply to foxglove

foxglove

Ummm....looks like the spray, even in single dose is causing me a slight tummy ache. Not as bad as yesterday.

I have some Jarrows B12 here, sublingual lozenges. So going to try them tomorrow

foxglove profile image
foxglove

Oh dear then...back to the drawing board got to be an answer somewhere! Good luck with the lozenges.

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