Pernicious Anaemia Society
15,909 members11,141 posts

first post on healthunlocked - some low thyroid symptoms as well?

hi how often does b12 need to be injected if suffering symptoms of b12 deficiency. I tested positive for intrinsic factor antibodies and my haematologist has said b12 injections once every 3 months is enough. my first one was done june 2017 and gp surgery has had difficulty fitting me in for every 3 months so I have gone without for quite a while. a list of my symptoms are below.

swelling in neck and in lymph glands

difficult swallowing

dry skin

feeling sick

dizziness

sluggish digestion

hair loss

tiredness

weight gain

pins and needles

dry and gritty eyes

ears ringing

feeling cold

burning in hands and feet

splitting nails

low energy

heavy periods

thanks for reading

FEB 2017

VITAMIN B12 195 PG/L (190 - 900)

FERRITIN 14 UG/L (15 - 150)

FOLATE 2.3 UG/L (2.5 - 19.5)

8 Replies
oldestnewest

Hi tomorrow you will get proper advice from others, but as I understand it with neurological symptoms you should be getting injections every 8 weeks. Tomorrow I am sure you will get ammunition (links to NHS guidelines) to give (throw at) your GP and haematologist.

Reply

Hi LVO51

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...

As beginner1 has said, if you have P.A. with neurological symptoms B12 injections should be every eight weeks - and for some of us even that is too long a gap between.

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.

It is also important that your Folate level is "kept healthy" as this is essential to process the B12 you are having injected.

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.

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

Reply

B12 isn't a one size fits all condition.

You have neurological symptoms so you should actually be on maintenance doses ever 2 months per the BCSH guidelines which your GP can find on the BNF - this is regardless of whether you actually have any anaemia.

Have your iron levels been properly tested - heavy periods can be an indicator of iron deficiency - which is a possible complication of PA as it reduces stomach acidity and affects the absorption of other vitamins and minerals.

Are you being treated for thyroid problems - if so and you have results you may want to post these on the TUK forum

healthunlocked.com/thyroiduk

unravelling B12 symtpoms and thyroid symptoms is very difficult because of the overlap.

Even treatment every 2 months is not necessarily going to be enough. You may find it useful to keep a diary of your symptoms and monitor how they change with time after shots as this will give you a guide as to what frequency you really need. Some people also find that very high dose oral/sublingual supplements, nasal sprays and even skin patches can help them to keep their levels where they need to be between shots.

Reply

yes I am being treated for thyroid, I am taking 25 mcg levo. serum iron low and transferrin low, mcv below range and mchc above range. thanks

Reply

are you being treated for the iron deficiency at all? Low MCV is a classic sign of iron deficient anaemia (and MCHC is high probably because it is a ratio dividing MCH by MCV

suggest you get hold of test results and post on TUK and on this forum.

You need more frequent B12, treatment for iron and its possible that you may be being undertreated for thyroid as you are on a very low dose but obviously have absorption problems.

Reply

hi not treated for the iron deficiency

DEC 2017

Serum TSH 6.8 (0.2 - 4.2)

Serum FT4 12.9 (12 - 22)

Serum FT3 3.4 (3.1 -6.8)

tpo antibodies 778 (<34)

tg antibodies 375.3 (<115)

Reply

are these the results after you started treatment?

suggest you post these on the TUK forum and would be good to say if they are pre- or post- treatment.

healthunlocked.com/thyroiduk

I think you will need to go back to your GP and ask for treatment for iron deficiency.

This is an article on Thyrogastric syndrome - combination of auto-immune thyroidosis and auto-immune gastritis that you might want to share with your GP

ncbi.nlm.nih.gov/pmc/articl...

and also ask for a review of your current treatment for PA in light of the the fact that you have neurological symptoms (eg pins and needles, tinnitus)

Reply

If you have not been tested for h pylori please consider being tested for it.

H pylori causes absorbtion issues with b12 and iron by reducing/loss of stomach acid and intrensic factor.

Your thyroid needs b12 and iron to function properly.

Reply

You may also like...