Pernicious Anaemia Society
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Vitamin B12 deficient

Hi my names Natalie. I’m new to this site. I’ve not been feeling very well for about 2 years. I’ve been feeling shaky, fingers numb, back pain. I went to the doctor and they said I was B12 deficient. My level was 25. They said I was also vitimin D deficient. They gave me a vitamin B12 injection. I felt great and all my symptoms disappeared, but after 4 weeks they came back but worse. I went to the doctors because I was frightened because of the symptoms and they said t was all in my mind and they were horrible to me, so I changed doctors. The new doctor checked my blood and said I didn’t need injections but to take supplements, so I take 2000mcg of vitimin B12. After 4 weeks, she tested my level and it was 150 and said it wasn’t low anymore. I am now getting really bad shaking, my back hurts. I’ve had an X-rays, all fine, just a curved spine and scoliosis. I had an ultra scan and they found I had hashimoto antibodies. The doctor said I wasn’t high or low yet. I’m not sure what that means, but she wouldn’t treat me because I wasn’t high or low yet, so she’s sending me to a specialist. I’ve heard folic acid should be taken with vitamin B1, I’m not taking any of that. Could that be why my symptoms are really bad and are not getting any better? Is B12 level 150 good to be at? Any advice appreciated.

Thanks,

Natalie.

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Hi Tayella

Do you know what the ranges <from - to> were when you were told your B12 levels were 25 and 150?

Are you supplementing with Vitamin D?

Yes! It is important to have a healthy level of Folate when supplementing with Vitamin B12. Do you know whether this was tested at the same time as the others? Have you checked the "ingredients" of your B12 supplements as some may include folic acid.

I'm not a medically trained person but there are others on here who will be able to give you good advice.

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Hi clivealive

My b12 was tested and it came back 25. Had one b12 injection. 4 weeks after that I got my symptoms back worse than before .

They gave me another injection then tested after 4 weeks of that injection and they said my level had gone up too 150 so no need for an injection. My doctor said my body could absorb from a vitamin supliment. I’m still shaky and feel like I may pass out. Today has been the worse ever

Natalie

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Hi again,

I'm sorry to read you are not feeling too good.

I'm a bit confused by the numbers you are quoting without knowing what the ranges are. Here is a typical set of ranges and you can see there is a difference between the pmol/L and pg/ml

Below 150pmol/L (200pg/ml). This level is most commonly used to signify vitamin B12 deficiency.

Between 151 and 300pmol/L. This covers a range that might be described as the Total B12 “grey-zone” where the true status of the patient is uncertain.

Above 301 pmol/L. At this level it would not be expected to find (much) true vitamin B12 deficiency.

If your current 150 is pmol/L you are borderline deficient but if it is pg/ml you are still very deficient

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Natalie,

Are you in the US? I ask because i am and here they give cyno b12 injections and those are usually every 4 weeks.

If yes, go get ALL your lab results (i imagine you had been to doctor multiple times before they thought to test your b12) and please post them with units of measure along with any results from a cbc (complete blood count) and cmp (complete metabolic panel). These results will help us, help you.

This forum has wonderful resources for you. It has helped me immensely.

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Hw u feel now? Ur symptoms gone? U inject weekly?

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Hi sorry for not replying

I went to hospital as I felt very strange my legs went tingly and numb felt very confused like I might have a fit or a stroke when at hospital when asked questions I just didn’t feel my self I waited at hospital after 1 hour I started to feel better the dizziness comes in waves i never saw no one and came home my hands are tingly

I can’t have injections I have to manage my b12 on vitamin

I will phone doctor and ask for blood result I will put up for maybe anyone on here can tell me what they mean I only no I’m low on b12 very low but after 2 injections they said it had gone up to 150 so I was not low anymore I’m low on vitamin d and I have antibiodes in my blood my body is attacking its self

Doctor says

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Hidden clivealive , Tayella.

There are two different tests that are done for B12 - serum B12 and active B12/holoT.

The limits for active B12 are about 1/5 of the levels of serum B12 as it just measures B12 that is bound to the protein that allows it to pass from blood to cells - which tends to be about 1/5 of the total B12 in your blood. 25 is about the bottom of the range for active B12 so it is possible that that was the test that was done.

Tayella, as explained by clivealive, there are also two separate ways of measuring the amount of B12 in your blood - they have different units and will have different ranges - so in order to really understand what is going on you need to know exactly which test was done and what the ranges and units for the result and the normal range were.

To be honest - results 4 weeks after a B12 injection the normal range doesn't really apply anymore so can't really be used to assess your B12 status but most medics aren't aware of this.

Tayella, it would also help to know which country you are in as the treatment regimes in different countries can be very different.

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I live in Australia I’m not sure on results they just took blood and said my b12 was all good now 150 that’s all the doctor said sorry I can’t tell you more I’m going to phone doctor and ask to see result they never showed me

After going back a few times my doctor has sent me to a neurologist I’m on a waiting list doctor said I could have ms

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MS can be a is diagnosis of B12 deficiency but is also worth looking in to as some MS patients to genuinely find that B12 helps them.

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Thank you I will look at the ms patients

When I had the 2 injection I felt much better didn’t realise how bad I was just a shame I’m not aloud to have regular b12 injections don’t feel like I get the same affect on my daily vitamin b12 Supplement I don’t see my doctor now for 6 months

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Also, if you are in Australia you can actually get B12 at a pharmacy without a prescription ... though you may have to get the pharmacist to double check to confirm that you don't need a prescription as not all appear to be aware of the regs.

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Thank you for explaining to me one thing I notice when I had injection the colour in my face changed I didn’t realise my completion had been a yellow grey colour when I had in jection my complexion was healthier now I notice and my husband notice my face complexion looks yellow again is that linked to b12 or ms

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honest answer is that I don't know much about MS. Responses to both B12deficiency and treatment for B12 deficiency are so individual that it could be related to the B12 and the fact that it improved would suggest that was the case.

suggest you make a list of symptoms and monitor them in relation to B12

pernicious-anaemia-society....

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Tayella you give a very clear account of what seems almost certain to be B12 deficiency. Don't wait 6 months to see your GP. Ask to see him/her again because of all the symptoms you have described to us and the effects of being treated initially and the deterioration since that stopped.

Ask to see the neurology specialist as early as humanly possible explaining that the treatment of neurological B12 deficiency is most effective at an early stage and that delay may make the damage irreversible. Ask him to record all of your concerns about this very clearly in your medical notes. In fact insist on this!

It should not be necessary to spell out in words of one syllable that you and your husband will hold him medically negligent if he fails to act swiftly and according to best practice to treat you properly.

Don't be fobbed off. I am a retired doctor and have had to be very assertive to ensure I was listened to. Almost every patient on this forum has had similar experiences.

Don't let them grind you down and try to take your husband with you to all the appointments to ensure that they listen properly to your concerns and act promptly. Sadly many doctors seek to dismiss females as neurotic but are much more reluctant to do so in the presence of a husband or other male. Apologies for sexist generalisation, but it does seem to apply to many doctors!

Be strong!

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It’s definitely true that taking your husband makes a difference in the response from doctors. I try to take my husband to my appointment as much as possible.

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I wouldn’t know how to do injections I brought some patches see if that works with the vitamins I brought some folic acid as read on here you need that also with b12 to work

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I live in Australia and became B12 deficient in 2005. I buy hydroxocobalamin over the counter and have it injected at a local bulk-billing (no payment required) GP practice. I just explained my history to the first available GP and she obliged without argument. Hydroxocobalamin is available at Chemist Warehouse for AU$8 for 3 ampules.

Don't delay any longer!

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If your initial total B12 was really that low you should be getting one 1000 microgram injection every second day until your symptoms don't improve any further.

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Thank you for everyone’s reply

Martín 12 i will go to a doctor on Monday and tell them my history and get the injections so hope they will do the injections I will let you know how it goes

Dewbuc I will push for the neurologist appointment sooner

I feel much better after the good advice on here some of the medical people have not been to kind to me and it is putting me off going back I will bring my husband with me I just want to feel better I have been living in Australia 10 years and not once went to a doctor only for my asthma pumps so not sure why doctors not helpful

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G'day Tayella

It is also important that your Folate level is monitored as this is essential to process the B12.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body and your B12 levels are "bumping along the bottom of the range.

It is not uncommon for some symptoms to appear to get worse before they get better as the B12 starts repairing the damage done to your nervous system and your brain starts getting multiple messages from part of the body it had "forgotten about" or lost contact with.

I sometimes liken it to a badly tuned radio on which you have turned the volume up high trying to catch the programme you want when all of a sudden the signal comes in loud and clear and the blast nearly deafens you.

A lot will depend on the severity and longevity of your B12 deficiency as to how long before there is no further improvement or recovery.

Some symptoms will "disappear" quite quickly whereas others may take months or even years. There is no set timescale as we are all different.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 46 years and I'm still "clivealive" and over 75.

I wish you well

for the future.

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G’day clivealive

Hope it doesn’t get too worse but good to know if it does get worse not to get to worried about it.

I never knew about folate until I read on this site. I have brought a multivitamin with folate in it.

I’m glad I found this site, it makes me feel im not going mad lol.

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Hi Tayella,

I’ve been recently received my blood results and turns out I am deficient in folate, vitamine D, and borderline B12. Also have high Hashi antibodies although my thyroid hormones are not low enough to be treated with hormones. Also have back pain which I think it’s caused by my lordosis (back curvature)and neck shoulders pain. It seems we have similar problems. I been given the supplements for all 3 deficiencies and I will have the INTRINSIC FACTOR test done soon as that could be the underlying cause of malabsorption of B12. Read up about it . Good luck,

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Please let me know how you get on with the intrinsic factor test. I have never heard of that. My doctor has never said anything about folic, just my b12 and vitamin d. I will read up on that

Thank you

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If you can afford it you could have a private test done if your doc refuses to do it. There are online trustworthy laboratories that offer all kind of tests. You just send back your blood in a kit they provide. It’s cheaper and faster than private clinics.

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I was a walking Zombie back in the late 1960s when I had the first "schillings" P.A. test (which was inconclusive) and in 1972 when I had the results of a second test my doctor said I had two years to live unless ate raw liver three times a day or had B12 injections every month for the rest of my life.

At the time I was 30 years of age had a sick wife with heart problems and two daughters under the age of six.

I love liver - but not raw - and so opted for the injections.

I do appreciate how worrying it is to feel so poorly but stressing only uses up the B12 more quickly.

I hope you begin to see an improvement soon.

Take care now.

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Clivealive that must of been very scary for you. I’m so glad you got tested a second time around. I did eat liver when I was a little girl. My mum cooked it and I hated it. I will try not to stress. thank you

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treatment was actually with raw liver.

thank goodness they developed an alternative :)

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Most of them know very little about b12 deficiency and don't like to appear ignorant! That's why it's very important to be well informed and assertive.

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Hi Natalie

Your B12 is very low considering you had injection and supplements. It might be worth showing your GP the summary of the latest BMJ research document below and pointing out (bottom of page 4 ' under, 'How is Response to treatment assessed' ) that, once b12 treatment is started, testing is not usually required as blood levels are not reflective of how effective the treatment is - it is the clinical condition of the patient that matters.

"Cobalamin and holotranscobalamin levels are not helpful because they increase with vitamin B12 influx regardless of the effectiveness of treatment, and retesting is not usually required."

It also contains information regarding frequency of injections for the neurological symptom you have that need treatment with injections without more delay :

"every other day until no further improvement (British National Formulary)."

This is a link to the BMJ summary only but GP would probably be able to access the full document:

bmj.com/content/349/bmj.g5226

Also from the book, 'Could it be B12?', by Sally Pacholok and Dr. J. Stuart, that confirms, as Dewbuc has stressed , not to be afraid to recruit extra support from the PAS or a close relative/friend when battling for continued injections:

"Unfortunately, when it comes to B12 deficiency,....in our own practices we've seen dozens of people who were diagnosed as B12 deficient at some point in their lives but later allowed doctors to discontinue their treatment. Several paid a high price for this lack of assertiveness because they now have permanent neurological damage or dementia. Conversely, we know of patients with B12 deficiency who are alive and well today only because they, or an assertive family member insisted - sometimes in the face of significant resistance - on proper diagnosis and treatment."

Very best wishes for better treatment !

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PS. Re. low vitamin D result, these are the 5000 iu tablets I take:

oxfordvitality.co.uk/vitami...

The K2 is important as it ensures vitamin D3 goes to the bones and not the arteries:

"When you take more of one fat soluble vitamins you create a greater need for the others, If those others are lacking, toxicity symptoms result."

"Although vitamin D in its own will increase osteocalcin production, together vitamins A and D have what scientists describe as "remarkable synergistic effect" to boost osteocalcin output 19."

"vitamin D stimulates the production of vitamin K2 dependent gla proteins, thereby increasing the body's demand for vitamin K2 and the potential to benefit from K2. That makes vitamin D a superstar because the more vitamin K2-dependent proteins you make, the more calcium you can direct to the bones and away from the arteries".

From "Vitamin K2 and the Calcium Paradox: How a Little-Known Vitamin Could Save Your Life"

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Polaris

Thank you I will show doctor the document I have been better today but now I’m in bed my tongue is sore I have a ringing sound in my ears and the tingly feeling in my hand and feet have come back my eyes hurt to look left or right I feel terrible again

I take ostelin vitamin d3 1000iu I take 3 of them as the chemist said they don’t go up to 3000iu

I will look at the link you sent me

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I'm so sorry you're feeling so poorly again Natalie.....

You WILL recover from this with early and adequate treatment and there is always the option of self injection, which has enabled many of us on the forum to recover :

This is the conclusion of the Dutch research :

"vitamin B12 deficiency can cause many different symptoms, among which are serious neurological problems. The treatment with high dose B12 injections is not only completely safe but fortunately also very effective. With the right treatment patients can recover completely. Starting straight away with treatment is essential, as is the continuing treatment in order to give the body enough B12 to fully recover. Therefore it is essential that patients are no longer exposed to the real danger of irreversible symptoms because of the imaginary fear of overdosing."

Take care

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