Although your folate is within range it is not very far up the range.
Have you asked GP if you would benefit from taking a folate supplement?
In a nutshell, if you have the symptoms of B12 deficiency, in UK you should be treated for B12 deficiency even if your serum B12 result is within normal range.
Try to track down the local guidelines on treatment/diagnosis of B12 deficiency for your CCG/Health board and compare them with BNF/BSH and NICE CKS links below.
Search forum posts using terms " local guidelines ", try an internet search with "name of CCG B12 deficiency guidelines" or submit a FOI request to your CCG asking for a link to or copy of the guidelines on treating B12 deficiency that your CCG uses.
Hi thank you very much. I did read your info you sent me before which was very helpful. I saw my gp as I have tinnitus, head pain, heart palps, tired, fatty liver, dizzy head, chest pain and he said my b12 was fine. I feel awful though. He told me to get my own vitamin d3 so Im going to carry on taking them. He will not treat me as vitamin b12 deficient. He has put me on beta blockers for the heart palps.
Some forum members in UK have been helped by person who runs B12 Deficiency Info website.
I had over 40 typical symptoms of B12 deficiency and a previous below range serum B12 result but NHS at that time refused to treat me. I resorted to self treatment as I had by then developed dementia type symptoms and spinal symptoms.
Many thanks for all that info....i mentioned that I have a few neuro symptoms that are getting worse, and ive been cleared of everything else, even had head mri, fatigue, poor nails, nausea, weight loss, inflamed liver and cleared of everything else, dizziness, bad headaches and blurred vision
Did your GP do all the tests? It's unusual for a GP to have access to the Active B12 test.
Active Vitamin B12 67 pmol/L (Range 25-108)
Vitamin B12 349.9 (197-771 pg/ml)
The Serum B12 is not considered to be very accurate and the Active B12 is recommended - both are in the "normal" range.
Homocysteine 14.0 (range 3.7-13.9 umol/L)
This is high but I guess the GP is considering the other results as well.
As people say, it's the symptoms that matter but the trouble is that the symptom of fatigue for example can be associated with other conditions. For example, thyroid disorders can lead to chronic fatigue. Have you had the thyroid tests? Perhaps ask your GP to repeat the Homocysteine test as it is high.
Hi I had a private test done, and my thyroid was also tested and came back clear. My gp has said that the raised Homocysteine level can be due to vitamin b being deficient. My folate was alittle low too according to him
"My gp has said that the raised Homocysteine level can be due to vitamin b being deficient. "
"He will not treat me as vitamin b12 deficient"
"My folate was alittle low too according to him"
So your GP has agreed that the raised Homocysteine could be caused by B12 deficiency but won't treat you.
Think about writing a letter to GP surgery and maybe copied to practice manager, pointing out you have raised homocysteine and worsening neuro symptoms and think about asking for a trial of B12 injections.
Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.
When a letter is sent to GP, worth including a request that GP practice sends written confirmation to letter writer that they have received letter. Proof a letter was received can be useful if there is a need for a formal complaint in future.
I included a request in letters that a copy of letter was filed with medical notes.
My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are therefore a record that an issue has been raised.
Useful to have a paper trail in case there is a need for a formal complaint over treatment in future.
Letters could contain symptoms list, relevant test results, date of diagnosis, brief family and personal medical history, extracts from UK B12 documents, requests for referrals to relevant specialists eg neurologists, haematologists, gastro enterologists.
The shorter the better as GP more likely to read it all , in my opinion.
Keep copies of any letters sent or received.
Mention any below range or borderline results for serum B12 you've had in the past and perhaps you could include this quote from the summary of the BSH Cobalamin and Folate guidelines, a UK document.
"In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment"
BSH Cobalamin and Folate Guidelines (link to whole document)
If the homocysteine test was done privately, you could request that your GP orders a homocysteine test or that you are referred to someone who can order one. NHS GPs often won't accept private results.
If you start to take b12 supplements that is likely to affect results of the homocysteine test, it will probably lower the homocysteine level.
Have you asked the GP what you should do about the folate as he thinks it's a bit low?
He'll probably suggest that you take a folate supplement with the RDA (recommended daily amount) of folate in it.
You could ask your local pharmacist for advice about whether to take a folate supplement. Make sure you tell them that you think you might have PA/B12 deficiency.
In a person with both folate and B12 deficiency, it is vital that both deficiencies are treated at the same time. Treating a folate deficiency without treating a co-existing B12 deficiency can lead to neurological problems. B12 treatment would usually be started first in someone with both deficiencies.
People can show symptoms of both folate deficiency and B12 deficiency even if serum results are within normal range.
Challenging GP however politely is likely to put some strain on GP/patient relationship.
Have a back up plan eg another GP surgery to go to.
Seeing a specialist is no guarantee of better treatment as there are some specialists whose knowledge about b12 deficiency is lacking.
I suggest you seek support from PAS. If you join as a member you could ring their members helpline.
As a last resort , some on the forum resort to self injection.
I did when I had exhausted myself over several years fighting to get treatment for obvious b12 deficiency symptoms because NHS refused to treat me at that time.
I know from my own experience when my vitamin D levels were very low I was having headaches daily and felt very unwell. I was also having muscle pain and weakness in both arms.
With your vit D level being below range that could possibly be causing your headaches, it certainly won't be helping. I'm not medically trained but just sharing my experience.
Also I know others have suggested writing to your surgery. I've found that really helpful and have actually got a blood test referral from doing so when the surgery had basically told me to go away. Always send a copy to the practice manager too.
It's difficult to have the energy to write a letter when you're not feeling well but if you can do so you may be surprised at the outcome.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.