Advice please

[pet-lamb]

Please advise I'm in the UK ,my latest blood results showed among other things a serum b12 of 152 range is 150.00-1000.00

Ferritin serum 31 range is 12-250.00

Folate serum 7.8 range is 2.00-18.80

I have an appointment on the 15 June for more bloods (FBC )

My question is this should I request the doctors to include more b12 Ferritin and folate tests .at the moment there denying there's a problem so no treatment and it doesn't look like these are included in the FBC bloods. Also up until about 2 weeks before I had my last bloods done I had been supplementing Centrum over 50 vitamins and cod liver oil high strength 1000mg capsules .by time I have the next blood tests I will not have taken supplements for 5 weeks in the hope of not getting false readings.

[clivealive Forum Support]

Hi pet-lamb Do you have any neurological symptoms such as those listed below?

The neurological symptoms of vitamin B12 deficiency may include:

 Numbness and tingling of the arms and more commonly the legs

 Difficulty walking

 Loss of balance

 Hands feel gloved with loss of sensitivity

 Loss of vibration sense, having to look down to see where you are walking

 Unable to close your eyes and stand on one foot

 Night vision

 Memory loss

 Disorientation

 Dementia

 Extreme mood changes

 Short term memory loss

If you do have any of the above then your doctor should stop looking at the word "Normal" on his computer screen and look at you, his patient and treat your symptoms in order to avoid the following.

False normal B12 results and the risk of neurological damage

(U.K. N.E.Q.A.S Haematics.org.uk)

“In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord. We recommend storing serum for further analysis including MMA, or holotranscobalamin and intrinsic factor antibody analysis, and treating the patient immediately with parenteral B12 treatment.”

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

[pet-lamb in reply to clivealive]

Thank you clivealive I have hashimotos so think my symptoms overlap I get breathless very easy my heart often feels heavy in the centre of my chest and palpitations are strong I experience hot heavy tingling legs from the knees down not every day.my tongue burns and tingles Poor memory inability to concentrate for long without feeling ill hearing and eyesight have deteriorated I'm waiting for a neurological appointment because I get pain above my eye right. And shooting pains over my head. I also get stabbing pains over the body intermittently the pains are sharp and some radiate a little they don't last long. my right heal is painful when I stand to the point it's difficult to walk on again occasionally .I stiffen up if sitting for a little while and end up walking as if I'm crippled for a short time. I often feel confused and my husband has complained of my now bad temper and irritability I used to be very calm I'm very noise intolerant and have problems with light sensitivity can't think of anything else at the moment but these are a sample.

[clivealive Forum Support]

I'm somewhat surprised that your doctor has not "cottoned onto the fact" that "people with autoimmune disorders especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease" are at an elevated risk of developing a B12 deficiency

Your doctor should be following the British National Formulary (B.N.F.) and the National Institute for Health and Care Excellence (N.I.C.E.) guidelines on Treatment of cobalamin deficiency and the relevant paragraphs for you as highlighted below:

"Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF,

The BNF advises that for Pernicious anaemia and other macrocytic anaemias patients presenting with neurological symptoms should receive 1000 μg i.m. on alternative days until there is no further improvement, then 1 mg every 2 months.

However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment"

The N.I.C.E guidelines actually telling your doctor "what to do" read:

"For people with neurological involvement:

Seek urgent specialist advice from a haematologist.

Ideally, management should be guided by a specialist, but if specialist advice is not immediately available, consider the following:

Initially administer hydroxocobalamin 1 mg intramuscularly on alternate days until there is no further improvement, then administer hydroxocobalamin 1 mg intramuscularly every 2 months.​"

It is also important that your Folate level is monitored as this and B12 help your iron to make red blood cells.

Make a list of your symptoms and present this to your doctor together with the guidance notes and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement".

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've had Pernicious Anaemia (a form of B12 deficiency) for 45 years and I'm still "clivealive" at 75.

Goodnight and I wish you well

[pet-lamb in reply to clivealive]

Thank you clivealive I'm grateful for your help ,sleep well

[Johnathan]

Pet Lamb

The range is suspect. Many people believe that it is too low. My wife suffered badly with low B12 and kept being told that her serum levels were "normal". When eventually they started to treat her, she only got one shot every 3 months. The doctor refused outright to give her more - even though she was symptomatic. We now obtain our own injectable B12 and syringes. She has a shot every 2 weeks and she is MUCH better. Her hair has started to re-grow. I cannot tell you what you should do, but suggest that you exhaust the NHS possibilities first. If they come up with an empty pot - remember that you always have the option of taking your health into your own hands. There is much advice on this site as to how to do it.

[clivealive Forum Support]

It was at the end of a very long day and after an old friend's funeral up in the Midlands, I guess I was feeling a little "threadbare" Hidden .

I must have got my woofs mixed up with my wefts and was a bit "woolly minded" - either that or I was trying to be polite to pet-lamb 's doctor and now I'm feeling a "little sheepish"

Thanks for your subtle "shuttle diplomacy" in keeping me on my toes....

[Gambit62 Administrator]

Test that can help clarify if B12 is in the grey zone are MMA and homocysteine (which will be raised if your cells don't have enough B12

serum B12 should not be used as a single measure to decide B12 status - it is a measure of amount in your blood but not of what is going on at the cell level (which is what MMA and homocysteine do).

The normal range misses 25% of people who are deficient ... and 5% of those who aren't deficient will actually have levels below the bottom of the range. Symptoms are important. This may or may not include evidence of macrocytosis (larger rounder red blood cells) - however 25-30% of people with B12 deficiency don't show signs of macrocytosis when they first present so it can't be used to rule out B12 deficiency either without risking missing a lot of people.

[pet-lamb]

Thanks everyone clivealive I remain grateful for your input especially as your day had been less than easy, Gambit 62 I don't have results for either MMA or Homocystine do) do you think they will be part of the FBC I'm due to have or as with the original question will I ask my doctors to add these and or the b12 extra list.Thank you in advance I really appreciate everyone's help