Confused about supplements???

[Clara5672]

I was diagnosed with low b12 back in july 2020. My folate and ferritin was in range.Iv been following a Facebook page but I'm worried about the high doses of vitamins they advise. Iv spent a small fortune on buying the recommended vitamins and 5mg folic acid supplements. I did a private blood test and my vit d is low.My doctor is useless and recommended 3 monthly injections with no help or support as I see the nurse for this.I self inject every other day and feel I need it but I'm so confused about what suppliments and how much I need to be taking to work well with my b12 jabs. I'm going this alone so any advice greatly appreciated.

[Nackapan]

As was said earlier. 5mg of folic acid should only be taken under a doctors instruction .you are in range so are fine

Then retested in 3-4 months.

200-400mcg daily is safe. I dont even need this !

I go by my blood results to work out maintenance.

Grassroots website is a good source of information on vit D

A modest multivit perhaps.

B12 works on it's own.

If you have an absorbtion problem you might need some supplements.

Also look at your diet :

Chard is in season. -folate

Vit c with meat

Get sun on your skin when we have it .

Bananas coconut water -pottasium

Nuts ,seeds ,fruit ect

I've been looking at my diet again as I've got to reduce my cholesterol...as was eating more meat for iron and possible b12 .

It's a balancing act .

[Clara5672 in reply to Nackapan]

Thank you for your reply. I'm new to this group so was unsure how to post a question without repeating myself. Many thanks

[Cherylclaire Forum Support]

Are you in the UK ?

The usual regime given by NHS is an initial loading set of injections (for example, I had 6 injections within a month) to bring your low B12 level up quickly, then a maintenance level (an injection every 2-3 months) to ensure that it stays there. The GP, after discovering the B12 deficiency, generally plays little/no part in the treatment thereafter, which is administered by nurses.

So this alone would not make your GP "useless".

In fact, many have recently stopped all B12 injections without consultation and have advised patients by letter to buy B12 tablets instead. No monitoring of results. Nothing. Others will not reinstate B12 injections until the patient has deteriorated to such an extent that the next B12 test again shows below range, however long and successful the previous treatment and whether or not the patient has proven Pernicious Anaemia (notoriously difficult to determine anyway). This is totally unacceptable.

Having/ finding a GP that you trust might be important. Your folate, ferritin and vitamin d levels may also be low or low within range, and need treating - and monitoring too. You might find you are more prone to infections and slow to heal. You may have PA - perhaps along with other autoimmune conditions such as thyroid (Hashimoto's, Grave's), psoriasis or vitiligo. A family history might reveal issues. You may need to be referred to specialists: gastroenterology, neurology etc. (although difficult currently obviously)

Crucially, other frequencies of B12 injection can be advised:

If you have presented with neurological symptoms, the recommended treatment regime is an injection every other day until no more improvement can be gained (NOT the same as "until you deteriorate again"), and then injections every 2 months. Nerve damage can take a long time to repair and, if left, can be irreparable.

If you have an inherited metabolic condition preventing B12 from being effective at cell level, the recommended treatment would be two injections a week. But this is rare.

If I were you, I would list all of your symptoms. Keep a daily symptoms diary or chart, using just the symptoms most easily seen or photographed/ most easily recorded/ most frequent/most serious/most concerning to you. You can just record occurrences (or also severity) quite easily, as well as when B12 injections given. This will hopefully give you an emerging pattern of effectivity. You can keep this to help you in appointments or consultations, especially if you are confused, have poor memory, have cognitive issues to deal with. For the same reasons, it can be useful to take someone with you. You can choose whether or not to show these records to a GP/ consultant.

The eventual aim of treatment, surely, is to pre-empt the return of symptoms, not to wait for evident deterioration before the next injection. Before that, you need symptoms to improve as much as is possible. If that is not happening for you, go back to your GP, with support, with records.... if you can get an appointment right now. At least start the process by letting them know that the treatment frequency is ineffective.

I later had a methylmalonic acid (MMA) test, which came back as a raised result. This can be an indicator of B12 deficiency, once renal problems and small intestine bacterial overgrowth (SIBO) ruled out. This took 3 years (and a lot of B12) to bring down to within range.

For comprehensive lists of symptoms, look at reliable sites such as the Pernicious Anaemia Society website. For medical guidelines that GPs are supposed to follow, read latest NICE guidelines. Other useful information can be found in the right-hand column on this page under the heading Pinned Posts. Get yourself better informed- bit at a time. It will help you.

It is not necessary to take supplements unless you need them- especially in large amounts.

These will need monitoring by a medical professional. It can be a slow process.

My own B12 level in 2016 was not particularly low: 196 ng/L (range 197 -771 ng/L) but folate and ferritin were low within range and vitamin D prescribed because osteoporosis of the spine was found. It took a few years to get folate and ferritin to remain at a good level and stable, osteoporosis has been checked by Dexascan in early December 2020, awaiting results.

We are all very different in needs and responses although little acknowledgement is given to this. The Pernicious Anaemia Society is currently involved in research that will hopefully find the reason why some can thrive on one injection every 3 months and why some clearly need more help to get there. Now more important than ever that this question is answered.

Wishing you well.