Homocysteine levels

[Joanna54]

What should homocysteine levels be very confused as each time I research I get a different answer 🤔

[fbirder]

Above 15 μmol/L is considered high. Below 10 is desirable. 10 to 15 is a grey area.

[Joanna54 in reply to fbirder]

Thank you for your answer get really confused when Dr tells me my Homocysteine level is ok at 18.5, I don't have pernicious anaemia but I did have 11foot of my terminal ileum removed 5 years ago so cannot absorb any B12 and have injections every 8 weeks and now they tell me I have ME and that the symptoms of B12 was masking by condition. So confused and fed up of feeling so ill fainting , falling over weakness tingling hands and feet etc and the worst symptom memory and speech 😤😢😧

[fbirder in reply to Joanna54]

Ask to be referred to a neurologist. It may be that your symptoms aren't all B12 related. Or they may suggest an increase in the frequency of your injections.

[Polaris in reply to Joanna54]

It may take some time to see a neurologist Joanna. In the meantime, I personally would write to GP with the latest BMJ research document summary (GP should be able to access full document (behind a paywall):

bmj.com/content/349/bmj.g5226

Page 1 under Who gets B12 Deficiency:

"Intrinsic factor is a protein, produced by the parietal cells of the cardiac and fundic mucosa of the stomach. It binds vitamin B12 to allow its absorption through the gastrointestinal tract, by way of a receptor on the intrinsic factor that is specific to cells at the terminal ileum. If there is resection or disease of the gastric mucosa or terminal ileum this leads to vitamin B12 deficiency as a result of malabsorption. "

Page 3 "Neurological features

Neurological impairment includes motor disturbances, sensory loss, abnormal balance and reflexes, cognitive impairment, and memory loss. Extreme cases may present with stupor or psychosis. An estimated 20% of patients with neurological signs do not manifest anaemia.13 Clinical features of anaemia may be minimal and the blood indices may not reflect important anaemia. Neurological symptoms can occur in isolation so it is important to consider a diagnosis of vitamin B12 deficiency in the presence of neurological symptoms of unknown cause, as neurological features may progress and become irreversible."

..........

High homocysteine is another indicator of B12 deficiency and, with your neurological symptoms as well as ileum surgery, it is highly likely that extreme fatigue means you need more injections. All the guidelines advise treatment, "every other day until no further improvement" (British National Formulary) for the neurological symptoms you've described, as failure to treat without delay and adequately risks permanent damage.

Very best wishes for better treatment Joanna.

PS It is often a good idea to take someone close with you to your next appointment to ensure this is taken seriously.

[Joanna54 in reply to Polaris]

Thanks for the information it's very informative and I will be showing it to my Dr 😁 this forum is brilliant and makes me feel that I am not fighting on my own any more thank you 💐