My folate deficiency merry-go-round.

[Blue_feather]

Hi all,I have joined here in hope of learning more about why l keep getting folate decifiency. It is currently 2.1.

I become deficient usually every 7/8 months and it has been this way for about 3 years.

Each time it happens, l complain to my GP that l feel exhausted, he runs blood tests and it is always low folate causing the issue. In between, it is low vitamin D. 😒

This time l also have elevated AST (liver enzymes) and wonder if the two are connected. I haven't drunk alcohol for about 2 years, and l eat a lot of folate rich food, so l don't understand what is happening. It is most annoying because it means l feel really tired and breathless for most of the year. I am a full time teacher, too.🥱

I have a couple of autoimmune disorders (autoimmune thyroiditis and mild systemic sclerosis for which l take Levo and Hydroxychloroquine).

I had wondered about pernicious anemia but my b12 is always in the 570/680 sort of range.

A couple of questions then:

* is pernicious anemia possible, and will my GP test for it if l ask?

*ls the liver enzyme issue (which is new) linked to the folate issue?

*ls this now (low folate) to be considered a chronic issue given that it keeps on going down once l come off the prescription folic acid? And should the reason be investigated?

Thanks in advance for reading and hope that someone can offer some ideas.

[wedgewood]

It is possible to have a normal B12 reading but be B12 deficient. It’s called functional B12 deficiency.

Also a blood serum test for B12 can contain up to 80% of inactive B12 .

Do try to take folic acid in its methylated form . Called L-Methylfolate . That might work much better .

Your GP should know all this .

Symptoms are the most important clue to diagnosis .

[Blue_feather in reply to wedgewood]

Many thanks for your reply, Marchwood; my Gp has prescribed 5mg of folic acid (Flamingo) on this occasion although l think L-Methylfolate has been a previous prescription l have had. I have an appointment to see him in a couple of weeks. Should l mention the prescription choice then?

[wedgewood in reply to Blue_feather]

I would certainly . I’m afraid that the Methylfolate is more expensive than the usual one . Do also mention that you have heard about Function B12 deficiency. Try to get an Active B 12 test . 👍

[Nackapan in reply to Blue_feather]

After the loading doses of5mg are you taking a folic acid supplement daily and vitamin D daily ? Is your ferritin level okay?

And full iron panel.

[Blue_feather in reply to Nackapan]

No, l wasn't advised to do so. My GP did tell me to buy my own vitamin D supplements as soon as l finished the last prescription for it, which l did and vitamin D is now in the 60s for the first time in a few years.As for the folate, l remember when l was first prescribed it, l went on holiday and left the tablets at home, so l popped into Boots and asked the lady behind the counter for the same as l had. She said they couldn't provide it as l would have to take 100s of pills to get anywhere near the same dose.

Because of this, l have not susequently bought my own.

My ferritin is upper mid range and is iron so no issues there.

A red herring perhaps, but my T3 is a bit on the low side (hovers between 3.5 and 4), but my GP won't discuss that one.

[Nackapan in reply to Blue_feather]

Oh I didnt mean continue 5mg.That is a loadng dose only.

200-400mcg daily folic acid is an NHS recommended maintenence dose for child bearing age women.

Its ususlly in s multivit

Sounds like you need s maintenence dose to stop the see saw levels.

My daughter needs daily folic acid otherwise level up snd down .

I need daily vit D . I seem to stay about 72 on supplements of 2000i.u daily

was 21

Range above 75 i think

I also take s low maintenence dose of iron to stay 'in range.' Will have bloods soon to monitor

[Blue_feather in reply to Nackapan]

Thanks for this. Will give this a go so thanks for the dosage needed, too.

[Cherylclaire Forum Support]

It could be useful to find out what your MMA is doing:

If your methylmalonic acid is having problems with forming a link to the B12 in your bloodstream, it can build up and appear in a serum test as above normal range: raised or high. B12 could also, in this case, be raised or high. Unless the link is made, sufficient B12 cannot get transported to where it is required by cells and tissues. B12 deficiency symptoms cannot get resolved.

Functional B12 deficiency could be diagnosed once renal problems are ruled out as a possible cause for raised MMA levels by blood test. The only other condition to eliminate that I'm aware of is SIBO (small intestine bacterial overgrowth) which can be done by a fasting series of breath tests over 3-4 hrs. SIBO will rob you of vitamins including B12, and is often difficult to get rid of - antibiotics usually, some of which can also deplete B12 and some of which the bacteria can become immune to. Probiotics also required after treatment.

With B12 deficiency, the following can be affected and require regular monitoring: folate, ferritin, vitamin D and thyroid. Both folate and ferritin for me can be problematic, vitamin D I now get on prescription as I had osteoporosis of the spine. Ferritin and folate can still be erratic for me.

[Blue_feather]

Thanks for the suggestions, CherylClaire. I will definitely follow this up.😉