Looking for answers

[JoXanAn]

New here, and need advice. Rec'd a call last wk from GP for B12 deficiency blood tests. Hadn't herd of Pernicious Anaemia - looked on NHS website, and thought "Wow! this sounds like me - this maybe it!"... Call from GP today - Blood tests "normal" Is this "normal"? Read somewhere that inactive B12 can still show up, i.e. masking the problem? Booked another appointment with GP to press further as sick of feeling well, sick, tired, low, dizzy, etc.etc... Any advice gladly received. THx

[Lisahelen]

Hi, welcome. Do you have your blood test results, if not can you get them. It might help us to help you if you can give us the actual numbers and reference ranges.

[JoXanAn in reply to Lisahelen]

I will get them from the Drs and post. Thanks.

[LtAngua52]

Doctors don't know what normal is! As lisahelen says, post your results for people to help you. You could also look at the pernicious anemia society website and b12d.org and b12awarenesd.org for information on symptoms, tests and treatment.

That last one should read b12awareness.org

[Gambit62 Administrator]

As Lisahelen says you need to ask for the exact blood test. Normal range certainly doesn't mean that there isn't a problem.

Unfortunately many GPS are hopelessly confused about how a B12 deficiency works to the point that some don't think it is possible to be B12 deficient unless you have macrocytosis. Many are also unaware that the serum test is not adequate on its own and they need to look at symptoms as well

This is UKNEQAS alert on interpreting B12 serum tests - clinical presentation is important

ukneqas-haematinics.org.uk/...

This is a link to the BCSH guidelines for treatment of cobalamin (B12) deficiencies

bcshguidelines.com/document...

you may need to draw your GPs attention to the summary on page 2 if you have neurological symptoms and the treatment regime on p8.

[JoXanAn]

Thank you for your replies and the links. I got my B12 and Folate results print out. B12 was 271ng/L, folate 4.1 ug/L. I have a further app booked with GP Thursday morning, so will press for further answers. Thank you already! Jo

Sorry meant to add, the cut off for deficiency in the lab seems to be >260ng/L I am no Dr, but this seems very close to call given that I am 11ng above the limit???

[goldlion in reply to JoXanAn]

Mine was 237 and despite seeing 4 gps and a consultant several times at the hospital none will consider giving me the injections! They'd rather send me for expensive scans and keep seeing me whilst looking baffled. Got another app at hospital next Friday. My consultant is very 'alpha male', you know, one of those types that's exudes power and self confidence, and not easy to talk to. He sneers when I mention b12. Good luck! You CAN sort this out especially now you've found this resource with so many people here to help. There are options available to you. I take sublingual supplements now but that means I've messed up any chance of getting retested and getting an accurate reading. But I really didn't care I was feeling so awful. They have helped but it is sloooooo

Have a peaceful weekend!

[Janee635 in reply to JoXanAn]

Hi there and welcome!

I've found this site so useful and helps to not feel alone with this problem. Just to let you know my B12 was 134 and also Vit D was only 18, doc has given me 14 every other day injections and we've just dropped them down to weekly,it took that many to get the symptoms sorted! Only last week did I suddenly feel better for the first time in goodness knows how long! I've started taking sublingual B Complex supplements daily too and I think they are helping,or at least I feel it can't hurt to keep levels balanced rather than wait for a possible dip? Hope your doc is on the ball and with neuro symptoms they really do need to keep going until you decide they are working!

Good luck,

[Twench]

Both your folate and B12 are at the low end of the range. Bear in mind that the reference ranges are indicative of the normal distribution of readings you would obtain if you tested a large enough but randomly selected segment of the population. They are not, in themselves, indicative of a person's state of health. Neurological damage from B12 deficiency can start at 500-550.

[clivealive Forum Support]

Hi @JoXanAN

On page 23 in the book “Could it be B12? – an epidemic of misdiagnoses” by Sally M. Pacholok R.N., B.S.N. & Jeffrey J. Stuart, D.O. there is a list showing:-

Who’s at greatest risk for B12 Deficiency?

Anyone at any age, can become B12 deficient. Thus you need to be tested immediately if you develop the symptoms described in this chapter. However, certain people are at an elevated risk. They include the following:

Vegetarians, vegans and people eating macrobiotic diets.

People aged sixty and over

People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).

People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications that can interfere with B12 absorption.

People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.

People with a history of eating disorders (anorexia or bulimia).

People with a history of alcoholism.

People with a family history of pernicious anaemia.

People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).

People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.

People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.

Women with a history of infertility or multiple miscarriages.

Infants born to and/or breast fed by women who are symptomatic or are at risk for B12 deficiency.

Can you "see" yourself in any of the above?

[Sleepybunny]

Hi,

another link that GP might be interested in

bmj.com/content/349/bmj.g5226

UK b12 websites

pernicious-anaemia-society....

01656 769 717

b12deficiency.info/

b12d.org

martynhooper.com/

B12 books

"Could It Be B12" by sally pacholok and JJ, stuart

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. this book is up to datew ith current UK B12 guidelines.

fbirder has a useful summary of mainly UK B12 documents. if you search his posts you should find a link.

"Call from GP today - Blood tests "normal"....

I learnt from experience that what I was told was "normal" face to face or over the phone was not always normal when I got copies of blood tests. i now always get copies of blood tests. In relation to B12, I concentrate on B12, folate, ferritin and FBC (full blood count)

[MariLiz]

Have they tested your thyroid function too? Many symptoms are similar for both conditions, and they often occur together, as in my case.

[JoXanAn]

Thanks MariLiz,

Yes thyroid function has been tested twice, one of the first things checked. Not seen exact results, and had the "everything normal" response from the tests, but appointment booked for Thursday to discuss further so we will see...

[Marz in reply to JoXanAn]

If only the TSH was tested - then you really do need a FULL thyroid profile done - TSH - FT4 - FT3 and Thyroid anti-bodies - Anti-TPO and Anti-Tg. The Thyroid Stimulating Hormone comes from the Pituitary and tells the Thyroid to produce T4 which is a storage hormone. The important things is that T4 converts into T3 - which is the most ACTIVE thyroid hormone and needed in all of the trillions of cells in the body.

The range is often 0.5 - 5.0 for the TSH and if in that range you are declared normal. Healthy people have a TSH of around 2 .... You are legally entitled to have copies of your blood test results so you can monitor your own progress.

Private Testing is available through Thyroid UK - kits sent to your home.

thyroiduk.org.uk/tuk/testin...

Wishing you luck as Docs seem so unable to understand B12D and the Thyroid. Both very inexpensive to treat .....

I am not a medic - just a Hashimotos sufferer with a B12 issue.

[JoXanAn in reply to Marz]

Thank you for all the info. Feeling well armed for my appointment on Thursday. Thanks again. Jo x

[Marz in reply to JoXanAn]

Will be interested to hear how it goes