Just had my levels of B12 given to me.

[19davo66]

When for my 2nd injection today of B12 & asked the nurse if I needed to make an appointment to see my General Practitioner, who didn't seem to know.

I am seeing a neurologist on Monday so maybe he/she will have the information I need to be told.

I have low follate, cannot find the numbers, but just been told by receptionist that my blood tests showed a level of B12 at 74.

Does that make sense to anyone?

I don't know if that is low, medium, on the cusp, nothing to worry about etc.... rather than spend the time Googling, I thought I would check with you guys first.

Many thanks to all.

David.

[nostoneunturned]

If the receptionist's 74 was correct then this extremely low, way below any reference range.

Your ferritin definitely, and maybe other irons, should be tested. See:

stopthethyroidmadness.com/f...

for extensive iron info. Thyroid site, no matter, info is good and relates to your case.

Your previous posts record neurological damage. In that case you should be treated in accordance with the British National Formulary as follows. I give the two types of treatment, the second should apply to you:

Hydroxocobalamin

Dose

By intramuscular injection, pernicious anaemia and other macrocytic anaemias WITHOUT neurological invovement, initially 1mg 3 times a weekfor 2 weeks then 1mg every 3 months.

Pernicious anaemia and other macrocytic anaemias WITH NEUROLOGICAL INVOLVEMENT, initially 1mg on alternate days until no further improvement then 1mg every 2 months.

The capitals are mine, just to make people aware of the difference as I have found that low levels B12 do not improve perceptions of differences.

You can find this on bnf.org. Registering costs nothing, head for: 9 Nutrition and blood, 9.1.2 Drugs used in megaloblastic anaemias.

Also set out in full in b12d.org but link is not to hand, sorry, but v valuable site..

It is to be hoped that your low folate is being dealt with by doctor as low folate means body has difficulty holding on to the injected B12. This is because hydroxocobalamin has to be methylated by the body using folate to do so but if you have low folate much of the injected B12 is excreted.

If you are not already a member, join the PA society at:

pernicious-anaemia-society.org

and avail yourself of the masses of info and expertise there. Joining also gives you access to the helpline to speak to a medically qualified person, afternoon only when I needed help but might be all day now.

Books to read/learn from:

"Could it be B12?" by Sally Pacholok and Jeffrey Stuart. Sally has PA.

"Pernicious Anaemia: the forgotten disease" by Martyn Hooper. Started the PA society and has PA. Amazon has both books.

I trust all goes well for you, please keep in touch with results and remember you are entitled to ask your GP for a printed out copy of your blood test results. Please when posting quote your result, the units lab uses, reference range. Lab ref ranges differ so without them it is difficult to comment.

[19davo66 in reply to nostoneunturned]

I cannot thank you enough for this.

Seriously, almost tearful - I have lots of information to absorb & questions to raise for Neuro specialist on Monday.

I am joining society, need to speak to them tomorrow.

Many, many thanks.

David.

[nostoneunturned in reply to 19davo66]

Links not correct, should have in front, so:

stopthethyroidmadness.com/f...

pernicious-anaemia-society (joining online is easy and advantageous

b12d.org

and also this very important one:

bnf.org

Go to last link, in search box type: megaloblastic anaemia Hit search

Takes you to a list with at top:

9.1.2 drugs used in megaloblastic anaemias: British National Formulary

Click on this, this takes you to sign in page, do so, next you are taken again to page for

9.1.2 Drugs used in megaloblastic anaemias

Having read that (or not) at the bottom of the page there will be a list, at top is

Hydroxocobalamin

Click on Hydroxocobalamin and you will get to the info, part of which I quoted to you.

I advise that you read also about Folic Acid.

You can print out pages for your reference - or to use to argue for correct treatment which is NOT 6 injections followed by one every three months, it should be the treatment for "with neurological involvement"

I am so sorry to have slipped up so badly, put it down to tiredness.

[19davo66 in reply to nostoneunturned]

You do not have to apologise - I really do appreciate this.

Going to connect my printer & get my evidence together for doctor.

Thank you - David.

[nostoneunturned in reply to 19davo66]

david, my computer took leave of its senses, no link would work, probably needs a spring clean.

mashby has given good advice/link below.

If you choose to supplement B12 in addition to the injections from doctor be advised you might well skew the blood test results GP will go by and he will get wrong idea of how you are doing. Most people wait until they are on the maintenance dose for their injection regime then when they find symptoms creeping back, if the time interval between injections is too long for them, they will supplement. I had to treat myself with sublingual tablets heavily for months as i was left byGP with 28 neuro symptoms but he was angry and contemptuous when I pleaded for treatment, very devastating to me and next GP also would not treat me (lawyer said would have highlighted his colleague's medical neglect - it's a tough world, believe me) but PA society knowledge came to my rescue.

When you have the time you can read how I did this by typing in

Active B12 Test in search box, I have several posts there for various people, but you have enough to do right now.

Do not cook/heat up meals in microwave, it destroys B12 and enzymes. Eat chicken livers, sardines in tomato sauce, herrings, non-farmed sea trout, lamb's livers, Ovaltine made with milk, give up alcohol for the time being as destroys B vits wholesale, and buy Betaine Hydrochloride with Pepsin, either Solgar or whatever H & B have, take strictly according to instructions to maximise B12 being cleaved (cloven?) from animal protein.

Sounds like "advice from teacher" but truly, start a file of blood test results and a diary of symptoms. Andrea Mcarthur, a moderator on PA forums has designed a spreadsheet for symptom recording.

Keep in touch please. The only way is up!

[nostoneunturned in reply to nostoneunturned]

Typing in search box: Active B12 Test without referral

works, when you have the time. I have umpteen posts there.

Please post how you got on with the neurologist, we long to know.

[My2kid in reply to nostoneunturned]

May I ask what your B12 Neuro symptoms were? My B12 is borderline low with high folic acid level even though I don't eat folic enriched foods. I also found out I have MTHFR gene mutation that has to do with methylation process of vitamins. I'm experiencing intermittent muscle cramps, some twitch like feelings in calves and arms, weight loss, abdominal pain but not signs of MS or progressive type of diseases - no gait issues, falling, dropping things etc. I'm otherwise appearing healthy for my age, non smoker, whole food diet, etc. Also getting my thyroid checked via ultrasound.

[Hidden]

Hi David:

The range for B12 starts at more than >133. Compare this starting point to the figure the nurse told you.

The link attached contains sources for foods enriched with folate:

chriskresser.com/folate-vs-...

(bananas, avocadoes, brocoli and many more), As mentioned above if your folate levels are also low it will prevent B12 from being absorbed.

With your low levels of B12 you need to get B12 intra-muscular asap, per the protocol provided above. I took my first shot one week ago and now supplement with liquid sublingual daily.

Take good.

mashby

[19davo66 in reply to Hidden]

I thank you most sincerely

Appreciate your help with this.

DAVID