Hi :)

[Foxxii]

I am new here, I was classed as having low B12 (below 500 by haematologist) in February 2017 and I was started on B12 injections in June 2017. I had my second one in January 2018, they are every 7 months, and I have started to notice that the dizziness and lightheadedness I get upon standing from sitting has resolved. However, I have been getting these other symptoms and I don't know why? I also have underactive thyroid.

Constipation

Low concentration, making mistakes

Pins and needles in feet

Joint aches in elbows, hips and knees

Neck swelling

Tiredness

Heavy/painful periods - I have untreated iron deficiency

Tinnitus

Cold feeling to skin

Nails splitting and flaking

and I was wondering if anyone could give me any ideas please?

I am really struggling at work at the moment, it is becoming more and more difficult to keep myself 100% well enough to stay in my job.

Thankyou

Serum B12 before supplementing (February 2017) 45 (190 - 900) monitored every 3 months

Serum folate 2.3 (2.5 - 19.5 in December 2017) GP says only slightly under range, no cause for concern, monitored every 3 months

Serum ferritin 21 (30 - 400 in February 2018) GP says only slightly under range, no cause for concern, monitored every 3 months

Vitamin D total 60.2 (50 - 75 suboptimal in December 2017) monitored by GP every 6 months, taking 6000iu from the prescription 800iu originally given.

[fbirder]

A B12 level of 445 isn't low. Over 80% of normal people have levels lower than this.

[Foxxii in reply to fbirder]

Thankyou but my haematologist says I would benefit from B12 injections and especially since I was positive for intrinsic factor antibodies

[clivealive Forum Support in reply to Foxxii]

Hi Foxxii

If you have Intrinsic Factor Antibodies (IFA) then you therefore don’t absorb B12 from your diet and you have Autoimmune Pernicious Anaemia. If you have P.A. with neurological symptoms then your "maintenance" B12 injections should be every eight weeks at the very least - not every seven months (see link to the N.I.C.E Guidelines below).

With "Serum folate 2.3 (2.5 - 19.5) you are deficient and need supplementation of one form or another.

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 level is also greatly deficient.

If you are in the UK make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well.

[Foxxii in reply to fbirder]

Mistyped sorry my B12 is 45

[Marymary7 in reply to Foxxii]

Foxxii , You can edit your post....go to the little v sign next to 'more' at the bottom. 😀

[Foxxii]

Would like to know why my folate is low too? Thankyou

[applesandoranges21]

In the US 445 would be considered low.

[Foxxii in reply to applesandoranges21]

Thankyou my B12 is 45 I mistyped

[Gambit62 Administrator in reply to applesandoranges21]

in some places perhaps but far from being common. It is possible to be deficient at this level but most people won't be. Symptoms need to be evaluated - you can't just go by serum B12 levels.

[applesandoranges21 in reply to Gambit62]

My point entirely. Some drs do unfortunately as u know. Thanks

[greenbexy]

When I first read your post a few hours ago, I thought 'wow your doctor is on the ball!' Then on looking again I see it was a typo!

Anyway, a small nugget of information that I found out through my own 'journey towards health' is that low iron can actually cause heavy periods, so it becomes a vicious circle!

I'm pretty sure your injection regime isn't helping, are you in the UK or the US? Either way, you aren't getting enough. Also vitamin D should be around 100 according to the vitamin D council. Is your Thyroid being treated correctly? Are you taking folic acid? All these could add to your symptoms.

[Ellen-C]

if your B12 is 45 you're in the pernicious anemia range which is very serious, and you need injections regularly like weekly as loading doses to bring you up to the normal range, then monthly after that. Why he would be giving you injections every 6 months tells me he knows absolutely nothing about B12 deficiency. Of course you feel horrible! Your ferritin is also very low. My ferritin is 209 so it's over the max and I get the same story (nothing to worry about...) but I will keep an eye on it every few months to see what it's doing. I'm doing loading doses of B12 but i'm doing it with liquid B12 supplement sublingual at about 8000 mcg a day currently. I am feeling so much better, the numbness on my left side is almost gone, I can walk better, I sleep way better, and on and on but my doctor wouldn't do anything either only my level was not nearly as low as yours. YOU NEED loading doses asap if your level is still very low. Mine was 306 when I started so "above normal" but I had so many horrible symptoms and I know that under 500 is when neurologic symptoms begin, so there was no way I was staying at 306. Oddly enough, I asked my hubby to go get checked as he had many similar symptoms as me and he was only 278... so he's on oral loading doses too. you could start oral doses... I buy my stuff preservative free 3000 mcg from Amazon, it's not expensive but really works. I take that twice a day and then a 2500 sublingual tablet once a day. I do it in 2 doses. But YOU need to get shots, if you're as low as 45 or were that low, and there is no way one shot every 6 months is going to do anythin gfor you. At least get loading doses shots until your levels come up enough and you may need shots monthly the rest of your life, but you can also take oral in between those shots to help keep things topped up. Think of your swimming pool as empty, and your doc is trying to fill it 1 teaspoon at a time. You should buy the book Could it Be B12? and read it, then give it to your doc. youtu.be/BvEizypoyO0(Not working as expected?) and youtu.be/OvMxJ6GRBNQ(Not working as expected?) watch those to learn... learn as much as you can about B12 deficiency then talk to your doc again. If he doesn't budge, fire him and get someone else or go to a naturopath who will do the shots.

[spacey1 in reply to Ellen-C]

PA isn't diagnosed by the blood levels of B12; it's just a common reason for B12 deficiency.

Treatment should be about the symptoms, not the diagnosis