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Is B12 level of 256 low enough to need treated?

(28 Posts)
RubySparks Tue 21-Oct-14 20:01:23

I have been having what could be symptoms of b12 deficiency for nearly a year - pins and needles/tingling sensations in feet and legs but also hands and face, sore tongue for last month and lots of trouble remembering and concentrating.

I had b12 blood test last week and result was 256 with range of 180 - 2000.

I also have coeliac disease and hashimoto's hypothyroidism so have never been quite sure if problems were due to those or something else....

Anyone been treated at these levels or have any suggestions?

sanfairyanne Tue 21-Oct-14 20:07:56

should be over 500 but whether nhs will treat is a different story
how is your celiacs and hypothyroidism?

RockinD Tue 21-Oct-14 20:50:49

Beat me to it!

Yes, a minimum of 500, but you need to get it a lot higher if you have coeliac and Hashis.

If your GP won't treat, or won't treat adequately, you can do so yourself with sublingual lozenges.

RubySparks Tue 21-Oct-14 21:55:29

Thanks and both in agreement! When I called to get results I was just told doctor had written 'normal' results so I specifically asked for b12 levels, that doesn't seem likely they will think it needs treated!

Where does 500 as level to start treating come from and where do I get sublingual lozenges?

Coeliac antibodies are now very low as I am pretty careful about sticking to gluten free, thyroid I think I need more levothyroxine as winter comes around so just recently increased to 100mg again.

spilttheteaagain Tue 21-Oct-14 22:00:31

IME, no it won't trigger NHS treatment.

I also have Hashimoto's. 2 years ago I went to the GP complaining about being permanently worn down and exhausted and they tested B12 and folate in addition to TSH and FBC. Both were below range.

B12 was 161 (ref 180-1000), folate was 3 (ref 4+)

They ordered repeat tests straightaway to check the results and mentioned the possibility of B12 injections, but at the repeat test 2 weeks later the B12 measured 208.

I was put on 3 months high dose folic acid (5mg daily) which sorted the folate and brought it up to 11.4.

No treatment offered for the B12 as it was just into range, just a retest in 6 months. I researched and decided to self treat. I take Solgar 1000ug sublingual B12 nuggets most days.
6 months later B12 was 617 so the pills clearly helped.

I am now on the system to get an annual B12 and folate check. This year's was 409 so it has dropped again, but I have been less reliably taking the pills so I think they are important.

The Pernicious Anaemia society has an active forum which may be helpful?
I was tested for PA due to the low B12 and that test was negative. You could ask for that on the basis of both your low B12 and your existing autoimmune diseases - PA is autoimmune as well. The test needed is the one where they check for "Intrinsic Factor". However, like coeliacs, it's fairly common to have PA but not get a positive test result, so it still doesn't completely rule it out. If you had PA you would need B12 injections regularly for life and would get those offered.

If you don't have PA, then personally if I was you I would look to supplement myself. B12 is best absorbed direct into the bloodstream, either by the injections the GP's prescribe or through sublingual nuggets that you dissolve under the tongue. If your levels are low, and esp given you have coeliac disease, it's likely that you are not adequately absorbing dietary B12 so this should really help.

Have you also had your folate and your iron levels checked? Because deficiencies in either of these can cause and/or worsen B12 deficiencies, the three minerals work together. I am hazy on the details now, it;s a couple of years since I read up on it, but I do remember that it's important to consider all three results together not one in isolation.

Good luck.

ipswichwitch Tue 21-Oct-14 22:01:11

I just got a letter from my consultant saying mine was 26! And I get 10 weekly b12 injections. He's asking advice from a endocrinologist. Does anyone have any idea what they'll do next? I'm getting loads of symptoms - pins and needles, some depression, tongue swelling, fatigue.

Sorry for the hijack op!

spilttheteaagain Tue 21-Oct-14 22:03:35

I used to get my B12 pills from the local healthfood shop but ours closed so I now get them from Amazon.

I get these and they seem to work for me.

Nature's Best is another supplement manufacturer that I and family have used and I trust. Very good quality products all made in the UK, and you can order online.

Or just try Holland &Barratt or similar if you have one.

spilttheteaagain Tue 21-Oct-14 22:07:21

wow that is low ipswich. I am no expert but I would expect they would do tests to check your other mineral status's like folate, iron, magnesium, calcium, maybe Vit D too.
And then that they would test for Intrinsic Factor, i.e. screen for Pernicious Anaemia.
You'll probably get a loading dose of B12 and then regular shots for maintenance and regular testing until they have you at decent stable levels.

And if you need B12 injections /have PA I think it awards you free prescriptions, so I suppose there's a bright side!

Go on the PA forum, there's loads of positive stories of how much better people feel so quickly after having their injections. Hope they make a big difference to you.

ipswichwitch Tue 21-Oct-14 22:20:58

Thanks spilt
I do have RA and other autoimmune conditions (always seems to be more than one autoimmune thing going on doesn't there?!) so PA fits.
All I know right now is when they investigated me for Crohn's a number of ears ago, they discovered the low b12 and put me on injections. Nothing else was done about it. The most recent bloods were done 12 days after an injection so should have been fine. The letter didn't mention any other issues with my bloods either, so I guess I have to wait and see what the consultants come up with.

spilttheteaagain Tue 21-Oct-14 22:23:15

That is weird isn't it. If you weren't having loads of symptoms too you'd wonder if the result was an error! Fingers crossed the endo can help.

RubySparks Tue 21-Oct-14 22:26:37

Thanks all, I will go back to doc as I think folate and iron were checked too and see if I can get more information. no probs ipswich! Have you ever been tested for coeliac....?

ipswichwitch Wed 22-Oct-14 09:04:51

Never been tested for coeliac Ruby. They thought I had Crohn's for a bit but now believe it's IBS. They did suggest I try cutting out wheat and lactose, and although I'm not 100% compliant with the wheat, I've notice the difference with cutting it right back. Let's hope we both get somewhere with all this soon.

RubySparks Wed 22-Oct-14 14:05:36

Yes, good luck! You should definitely be tested for coeliac though - unfortunately it would mean eating gluten again for a few weeks before the test. Current guidance is not to diagnose IBS until coeliac testing been done.

RubySparks Fri 24-Oct-14 14:34:19

If anyone still reading, I just spoke with doctor and found previously tests for b12 with levels of 290 a year ago and 385 eighteen months ago so definite downward trend. Very reluctantly she has agreed to treat and see if symptoms improve. So 3 injections in next two weeks and then 3 monthly after.

RubySparks Sat 25-Oct-14 18:26:59

Has anyone had the injections? Just wondering how soon I might see a difference if symptoms are due to low B12. Thanks.

spilttheteaagain Sat 25-Oct-14 19:22:29

I don't know as I haven't had the injections, but just wanted to say hurrah for you getting treatment! I hope it makes the world of difference.

Off the back of this thread I've made a GP appt too to get my TSH etc rechecked. I think it's up the spout again as I feel like crap, and this thread has for some reason given me the shove I've needed to go and get it sorted out. It's awful isn't it, that utter lack of energy or spark.

RubySparks Sat 25-Oct-14 22:12:18

Thank you spilt and best of luck, I think I know what you mean about it being such an effort to try to DO something about the problems. It seems to take up so much time and effort to get the appointments, push for tests, get to the tests, get results, (normal of course!) and then make the effort to push for something else. It seems 'easier' to just live half a life... I got a bit excited thinking this might be the thing to make a difference!

I used to work in software support and we always made the effort to solve the customer's problem. I never ever feel the doctor has any interest in figuring out the problem, it's just endless 'nope it's not that'.

RubySparks Tue 28-Oct-14 22:43:14

So I had the first injection today, so far so good, next one on Thursday.

Lonecatwithkitten Wed 29-Oct-14 13:50:08

Sadly PA does not get you free prescriptions as it is a failure to absorb rather than the bodies failure to make it.
If you are brave enough it can be worth doing the B12 injections yourself as you get much more control over when you top up, I am allowed up to 10 vials per year so as often as every 5 weeks if necessary.

RubySparks Thu 30-Oct-14 18:51:35

Second injection today which for some reason hurt a bit more than the first one! Head seems clearer but all other symptoms are the same.

As it happens on the prescriptions, I think the hypothyroidism meant I was eligible for them but as I'm in Scotland they are free. Though I understand B12 is pretty I expensive treatment anyway.

I will wait and see how I feel after first six injections and then have to wait
I think 3 months for 'maintenance' dose, if I start feeling rubbish again I might be brave enough to do injections myself!

spilttheteaagain Thu 30-Oct-14 21:06:22

Yes the hypothyroidism means you get all your prescriptions free. Good to hear that your mental fug is starting to lift. I gave half an arm of blood yesterday in the name of diagnosing the cause of run down tiredness. Passed out in the doctors office. Badge of shame! Tried to get up too fast, insisting I was fine and worrying about holding up the next appointments, only to pass out again. Got given biscuits though. DD (3yo) was very pleased to get a choccy biscuit because mummy was a "bit wobbly" grin Just got to wait for results now and then like as not, argue the toss over what needs treating.

RubySparks Thu 30-Oct-14 21:36:09

Oh no spilt! Hope they find something after taking all that blood and keep taking the tablets (B12)! I have been researching more and finding things like elevated bilirubin can be a symptom of low B12 - something that showed up in a test nearly two years ago. Leg pain can be a symptom, also been experiencing for more than two years. I had been blaming some of this on the thyroid problem.

I am fairly convinced I have a problem with B12 now. Will see how I feel after next 4 injections and go back to GP to ask about PA testing and get the other test results as I'm sure they checked iron and folate too though results were supposedly 'normal'. I also have annual coeliac check in December so will bring this all up then.

RubySparks Tue 04-Nov-14 11:13:44

Had third injection yesterday and head still feeling clearer but pins and needles seem as bad as ever so hoping after next lot of injections that will improve. Got a printout of other test results if anyone can shed any light on them?

Folate 6.2 (range 2.8-20)
Ferritin 106 (5-200)

These seem fine?

Also iron is 33 (range 10-28)

Thanks

RockinD Tue 04-Nov-14 12:52:51

You’d need to try and get some proper advice on this, but my understanding is that all that B12 may throw the rest of your B vitamins out and you may need to tale a good B complex with folate in it to balance everything out. That folate level is looking a bit low.

RubySparks Fri 07-Nov-14 22:59:31

Thanks- I think the thing is not to supplement folic acid until B12 is a good level otherwise problems can be masked somehow. I can try the coeliac consultant I see in about 6 weeks for more information. Had 5th injection today and do feel more positive, more energy but still got the tingling.

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