Well, I've had my Active Vitamin B12 . . . .

[flatfeet1]

I was very impressed by how quickly the turn around time was, went in on the Tuesday am and the result was back on the Friday pm, (I have heard the usual time is 7 to 9 days).

I had it done at the Nuffield who sent it up to Warwickshire for testing. (Not cheap £72)

The result is ACTIVE B12; 139.6 ( Range 25.1 - 165.0 )

Well if its not B12 or hypothyroid, what is it ?

Symptoms are, (among many others) ; Numb burning feet, sometimes hands and sometimes tingling numb lips and tip of tongue.

January 2013; B12 serum 343 (range 175-900)

May 2013; TSH 3.1 (range 0.35-4.500)

[tegz]

Have you ever suffered from migraines?

I used to and numbness + tingling were all part of the precursor -and followed quickly by vision disturbances. All down to brain chemicals and arterial pressures there!

Followed by the mother af headaches , of course.

[flatfeet1 in reply to tegz]

Hi Tegz, no migraines but I do have a very frightening icy cold sensation running over my scalp/head every so often.

[tegz in reply to flatfeet1]

I would pursue this with GP again. Can be very disturbing.

I've had similar after a head injury and it took ages to get a scan [obviously clear by then!] but started current probs, I reckon.

Don't worry yourself to death over it- but the Docs are good at waving us 'well worrieds' away- HaHa ... :~/ [wry smile]

Can you identify a time [like Friday eve] or dietary intake that might trigger it?

[flatfeet1 in reply to tegz]

Thanks Tegz,

I have stopped my cocktail of vitamin supps, on which I was feeling almost back to old self, but as doc had said she didn't think I needed vit C and the fact that i had to stop the vit b12 for the test I stopped everything. The ice cold feelings in head that had stopped when on the supps, have now returned, so I do think its to do with a vitamin deficiency but which one ? I am thinking of starting them again but one at a time noting the effect they have.

[tegz in reply to flatfeet1]

Well, your B12 reading in Jan wasn't brilliant so maybe you were feeding the system that bit extra.

It's the one mostly identified with neuro symptoms when low, though you weren't low enough on the face of it, for that. Someone posts on active B12 here quite a lot so maybe they can add something.

All you can do is add them back one by one till you find the one that does the trick.

Remember, a good diet is better than supplements and Vit C in large doses can have a rebound when stopped- so add cautiously and stopping in stages is best.

A good daily multivit should take care of most things.

GPs don't do much on nutrition , I know.

[flatfeet1 in reply to tegz]

Hi, I have a really good diet plenty of fresh fish fruit veg and meat cooked fresh by hubby, spoilt really.

Interesting, I never knew that about Vit C, Will add back vits one at a time, would love to know why all of a sudden I need vits (or a particular one) as I haven't changed diet or anything.

Do you know of a good multi vitamin ?

[tegz in reply to flatfeet1]

I take 1/2 a H+B ABC+ Seniors multi. No iron ,but can be done separately. Also at this dose- less than RDA iodine ,which is better if on T4.

Good buys are Mag Cit and Zinc+Copper together [best that way].

[Mia1057]

I never feel well unless my TSH is at the very bottom or below the range. Do you know what your T4 and T3 are.

[flatfeet1 in reply to Mia1057]

Hi Mia,I don't know what my t4&3 were back in April, (if we could look that far back on this site I would look it up) and no, I don't feel myself, thanks.

[PinkNinja in reply to flatfeet1]

I have looked under your profile at your older questions and found this that you posted. It has your thyroid results on. To me, you look hypothyroid but you are within range.

healthunlocked.com/thyroidu...

I hope that helps

[tegz in reply to PinkNinja]

Flatfeet- did you ever try the Levo earlier on - and if so what was the result?

No doctor would prescribe a hormone that wasn't [on balance] considered needed.

[flatfeet1 in reply to tegz]

had a trial low dose, felt amazing back to my old self but it didn't last, in fact after 5 weeks I felt much much worse, so stopped. (with docs approval)

[tegz in reply to flatfeet1]

Have you got results- we know GPs are prone to like poor figures just in range and TSH high limit is a joke.

[flatfeet1 in reply to tegz]

Hi Tegz,

Sorry for late response.

Here are my results:

DOCTORS

January 2013

TSH: 1.9 (0.35-4.5)

February 2013

TSH = 4.2 (0.35-4.5)

TPAnti = Acceptable

May 2013

TSH= 3.1

PRIVATE

Thyroid Profile 2

Total Thryoxine (T4) 98 nmol/L 59 - 154

Thyroid Stimulating Hormone 3.57 mIU/L 0.27 - 4.2

Free Thyroxine 16.5 pmol/l 12.0 - 22.0

Free T3 4.9 pmol/L 3.1 - 6.8

Immunology

Thyroid Antibodies

Thyroglobulin Antibody 15.8 IU/mL 0-115(Negative)

Thyroid Peroxidase Antibodies <5.0 IU/mL <34 (Negative)

Method used for Anti-TPO: Roche Modular

Method used for Anti-Tg: Roche Modular

Any thoughts gratefully received, Many Thanks, FF

[tegz in reply to flatfeet1]

You don't date the private tests- but if that's the latest you really ought to keep an eye on it, as drifting over limit soon, even though T3 is not too bad,

Take account of energy levels etc.

If you optimise your diet/vits you may do better next time round, if needed.

If Folate low- could be affecting things with B12 despite the good active test.

[flatfeet1 in reply to tegz]

Sorry, Private Test was back in February, so at last count tsh was on the way down = 3.1. Folate 11.5 (but don't know range)

thanks tegz

[flatfeet1 in reply to PinkNinja]

How did you do that ? I mean go back to the old posts, this is really helpful. Yes I think so too but tsh has gone down and I don't feel as bad as back then. but tingling lips is a new one Thanks

[PinkNinja in reply to flatfeet1]

If you click on your name on the green bar you get a drop down menu. Click 'Profile'. In the top right hand corner under the green bar is a yellow button that says 'View my public profile'. Click on it and it will take you to your recent activity. The activity only shows one page of recent activity but there are three buttons above it. If you want to find an old question, click on 'questions' and then you will see all the questions you have asked. There are arrow buttons at the bottom of the page so you can go back further if you need to

[flatfeet1 in reply to PinkNinja]

Thanks Carolyn, found them

[PinkNinja]

It could be other B vitamins. B6 is important for nerves, as is B1 (thiamine). Here is a link about thiamine deficiency that I read the other day. If you are not already doing so, you might want to take a good B complex with your B12.

stewartnutrition.co.uk/nutr...

I hope you find the solutions soon!

Carolyn x

[flatfeet1 in reply to PinkNinja]

I was thinking taking a good vit B would be a good idea, but worry that some supplements will skew any future tsh tests

[PinkNinja in reply to flatfeet1]

You could always stop them a few days before any tests. Definitely stop them before folate or B12 tests too as they will definitely skew those.

[Hidden]

Hi Flatfeet! Question - when you were on the supplements did they help you? I looked back in your posts and there is one about when you first took a B12 supplement and had some side effects. What you described sounded very much like start up symptoms to me. Usually when we react to a B12 supplement, it actually means we need it.

With this in mind you could try adding your supplements back in one by one, starting with the B12, then a B complex, as Carolyn suggests. If you find it does help you, then you could have a transport defect or methylation cycle defect, meaning you have enough B12 but you can't get it to where it needs to go. I have recently changed to this B-complex as it has active forms of both B12 and folate, but no nasty additives in the capsule:

breakspearstore.co.uk/produ...

The other option is the MMA test, but it is expensive - £96 through St Thomas' with a referral letter. The Homocysteine test is £40 through the same place (can be elevated in folate, B12, B6 or B2 deficiency, so not as specific).

H x

[PinkNinja in reply to Hidden]

That's interesting about start-up symptoms. I'll have to remember that.

[Hidden in reply to PinkNinja]

The same thing happened to me Carolyn, headache was so bad I had to keep stopping to get some relief from it. I am told this will go away when levels come up but I am one of those people whose serum B12 is not that bad at 465 but as we all know if cannot be trusted. Not had active B12 done or MMA, hoping that the sublinguals will do the trick.

[flatfeet1 in reply to Hidden]

Thanks H,

so you too can get back to old posts, HOW do you do this would be so useful. Yes supplements helped a lot the B12 didn't give me any more problems but the mistake I made in a effort to feel human was too take a cocktail of supplements all together so don't know which helped but some work synergisticly so its a hard task to know which combo would be best.

Adding supplements one by one as You and Carolyn suggest I think will be a good idea but as I replied to Carolyn I do worry that some vitamins will skew any tsh test.

Would not having had the ACTIVE B12 test shown up any transport defect or methylation cycle defect, ?

[Hidden in reply to flatfeet1]

I don't think so, you'd be looking more at complex genetic testing for that. Have a look at this link and see how crazy it gets:

heartfixer.com/AMRI-Nutrige...

Also I'm wondering whether you still had supplements in your system, it's not an exact science as to how long they stay in your system, I'm pretty sure everyone is different.

[flatfeet1 in reply to Hidden]

Errrr . . . I think I'll leave that to the experts or wait till I get my brain back I did stop vits for 2 months before the test thinking this was long enough.

Thanks

[Hidden in reply to flatfeet1]

Lol, I know what you mean! Could just be you're B12 is fine, problem lies elsewhere. x

[Hidden in reply to Hidden]

Also this link:

b12d.org/2-energy-cycle-and...

Read the section "From blood to cell to mitochondria"

[flatfeet1 in reply to Hidden]

Nope, still not got sufficient brain cells Will try something else, maybe multi vit B as suggested. Thanks

[Everdean in reply to Hidden]

Hello hampster1. Please would you tell me what methylation cycle defect means. I think I may be deficient in B12, but my blood test results look fine. 800 ref range (211.0 - 911.0) Thanks for any comments

[Hidden in reply to Everdean]

Hi Everdean, I've sent you a PM as it won't let me post here for some reason.

[Everdean in reply to Hidden]

Thank you hampster1. I will read those sites. Regards

[ThyroidThora]

Has your blood glucose been checked? These are similar symptoms of diabetes and the tingling lips and tongue are a sign of a diabetic hypo.

[flatfeet1 in reply to ThyroidThora]

Yes thanks ThyroidThora, was done back in March I think, and it was fine.

[ThyroidThora in reply to flatfeet1]

That's good. I'm not sure what else it could be other than thyroid related. Sorry I cannot be of more help.

[flatfeet1 in reply to ThyroidThora]

Thats ok ThyroidThora, I believe it is too. thanks

[ThyroidThora in reply to ThyroidThora]

Hi Flatfeet, and your post got me thinking. What glucose blood test did they do? Was the HbA1c test or a fasting blood glucose test? If it was the HbA1c test then this could be misleading because it is a blood test that works out the average blood sugar over a 3 month period. There could high blood sugar readings and low blood sugar readings that when averaged out will show you in the normal range. You might want to clarify this fact with your GP if you don't which test you had done. Alternatively, you could go to a chemist and ask them to do a blood glucose test for you, they don't charge and if you do one in the morning after fasting overnight and going without breakfast it might be a better indicator of your blood sugars. It's just a thought should you decide to pursue it more.

[flatfeet1 in reply to ThyroidThora]

Hi TT, sorry for the late response. When I had my cholesterol tested at a supermarket promotion, I asked about glucose/diabetes test which she obliged and said it was fine. Glucose = 4.7, it was a fasting one.

I am thinking that maybe I have an adrenal problem which makes potassium high which in turn can make you tingle.

But also I have learnt that low calcium can also do this too. Having supplemented with vit D this could have affected calcium levels, but don't know for sure.

It's all a puzzle

Thanks for all your advice and help

FF x

[ThyroidThora in reply to flatfeet1]

Hiya FF

It's such a complicated thing, the endocrine system. I think I've now got an adrenal problem because a certain blood test that they've done at the hospital and also as part of my diabetes annual check up could indicate adrenal fatigue or cancer. I showed the result to my endocrinologist and he said it can be a sign of an infection or asthma or hay fever. I didn't have any of these conditions when both blood tests were done so I think it's adrenal. I'm going to monitor stuff and see what happens. I hope you get to the bottom of your health worries.

Good luck,

TT.

[flatfeet1 in reply to ThyroidThora]

Good luck with yours too, and let me know how you get on.

ff

[Hidden in reply to ThyroidThora]

I just read that itchy, tingling lips, especially on the sides can relate to B12 deficiency. Its a mine field!

[Muffy]

I think in the book 'Could it be B12', they recommend treatment if below 500.

[flatfeet1 in reply to Muffy]

thanks Muffy, I will be supplementing again.

[shaws]

I would suggest that your TSH may still be too high for you to feel well with relief of clinical symptoms. This is an extract from the ex President of the British Thyroid Association's article in Pulse Online and his recommendation for the TSH:-

6 What is the correct dose of thyroxine and is there any rationale for adding in tri-iodothyronine?

The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range – 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

If you need a copy of the whole article for your GP, email [e-mail]

[flatfeet1 in reply to shaws]

Thanks Shaws, I do believe I still need levo but better managed, I will email Louise.

[moatie]

also may be wise to check vitamin D - sounds a bit like my symptoms I have to take supplements everyday as my body doesn't absorb enough.

[flatfeet1 in reply to moatie]

Thanks Moatie, I will be supplementing vit D again, but one thing added at a time, this time around.