Low folate and fatigue help

[Missfolic63]

Taking folic acid 7 weeks feeling worse more fatigue like air hunger b12 was 258 doctors say is OK why do I still feel so bad

[Gambit62 Administrator]

Whilst 258 is in the normal range for serum B12 it may not be normal for you. Serum folate has a very large range because different people are okay at different points on the scale, but tend to have a fixed level because of the way the body regulates B12 levels in blood (release stores from liver into bile for reabsorption). If you have an absorption problem this mechanism will no longer work properly and levels will fall - which is a better way of using the serum B12 test. However, it also isn't that sensitive and if you test the same sample many times the results will vary by 20% so, only drops over 20% would be significant, if you have had a previous test.

If you have a folate absorption problem - eg you have good levels of folate in your diet so the deficiency wasn't caused by diet - then that increases the probability that you also have a B12 absorption problem because they are both absorbed in the terminal ileum.

The limits of serum B12 and the importance of considering B12 absorption problems in the presence of folate absorption problems is covered in this (now rather old) guidance produced by the BCSH

onlinelibrary.wiley.com/doi...

[Missfolic63 in reply to Gambit62]

I had my gallbladder out 20 years ago my gut was never the same again after .I'm a vegetarian have been all my life .I've explained several times to my doctors b12 deficiency seems to run in my family both siblings have it as did my mother. Her answer was well you didn't have a b12 deficiency she said 258 is a good level..I honestly don't think it is for me since taking folic acid for 7 weeks I'd say I feel the same if not worse .I've rang the doctors several times impossible to get an appointment. I have had telephone calls but none of them seem interested that I'm so fatigued I can't work ..I might get an hour where I think oh I feel ok and start to do something and then I hit the floor with fatigue lightheaded and need to lay down I'm getting so fed up and low

[Gambit62 Administrator in reply to Missfolic63]

Unfortunately it sounds like your GP is just going by results on paper rather than understanding exactly what the test means.

I would suggest that you look at the linked documents, draw out the following a) treatment for B12 deficiency needs to be based on symptoms as people can be deficiency with serum B12 levels well into the normal range. b) the presumption should be that a folate deficiency is likely to co-exist with a B12 deficiency where the folate deficiency isn't dietary.

[Oneash in reply to Missfolic63]

258 is a low level, but 'in range', GP knows sweet FA. You want your B12 above 500 to be healthy. If you're vegetarian are you eating lots of milk products and eggs, daily? 4+ eggs and 2 pints of milk, or cheese or yoghurt equivalent daily? If not, you aren't getting enough B12.

Your folate won't be working well without B12.

Do you think you absorb B12 supplements, or do you need injections?

Igennus do a Super B12-Complex and a Super B-Complex, I'd recommend. I'd also recommend you take their fish oil supplements for DHA Omega 3 fatty acids, but that might be against your principles.

Remember B12 is a water soluble vitamin, so if you take more than your body needs, you just pee it out. So don't worry about taking too much.

Getting high folate supplements without enough B12 can cause nerve myelin damage. See if your 🤬GP knows that!

B12 is needed for healthy:

Blood cells for carrying oxygen

Accurate DNA replication

Brain and nerve myelin sheath

Immune system T cells

Energy release in mitochondria

Protein recycling in the liver, breaking down toxic homocysteine.

Plus many other functions.

Big hugs. 🍀

[Missfolic63 in reply to Oneash]

Thanks for replying. I don't eat cheese that's only because I have no gallbladder high fats upset my gut.the doctors have agreed to do more blood test again next Tuesday I really think I need the injection for b12 but no chance with my doctors! So once the bloods are back I'll follow your b12 complex any recommendations for good ones ?

[Oneash in reply to Missfolic63]

As I said, Igennus Super B12-Complex as it has 3 different cobalamin types in it. igennus.com/pages/search-re...

I think it's remarkably easy to be low on B12 if you don't eat meat. So hopefully the supplement will work well.

[Missfolic63 in reply to Oneash]

Thank you for all your help and advice.

[Myoldcat]

And I think it's true that if you start taking folic acid supplements, your body will then use B12 more rapidly. In your case, your already low levels would fall even further which could explain why you feel worse. Another blood test would show that.

[Missfolic63 in reply to Myoldcat]

The doctors said another blood test in a month I can't honestly go on like this for thst long 😩

[Myoldcat in reply to Missfolic63]

If you have the strength, write a (polite) letter to the surgery's practice manager explaining what you think is happening re B12/folic acid, and state that you feel your health is being irreversibly damaged by a lack of treatment. Letters may work better as you can take time to put your case more clearly and bypass the stubborn refusal of your gp to act in a timely fashion.

[Missfolic63 in reply to Myoldcat]

That sounds a very good option thank you

[Sleepybunny in reply to Myoldcat]

Link about writing letters to GP about B12 deficiency. It has letter templates.

b12info.com/writing-to-your...

[Country_Bumpkin87]

I’m 37 & had urgent cancer colonoscopy/gastroscopy due to weight loss other digestive & bowel symptoms worsening…kidney & bladder was scanned back in August 24 cleared of issues yet physio privately said pelvic floor dysfunction

I have had ibs since around the time thyroid flagged as underactive & we thought both were triggered by medics cocktail of drugs however actually a lot seems genetic. Both overall manageable too not needing consultants…. NOW is different as ibs wasn’t even flagged from the endoscopies & therefore what else did they not consider?

I was put on folic acid for 3 months to increase folate levels supposedly b12 fine yet they’re retesting at 3 months if not before to also check other liver function results I also want thyroid further checked but that’s a private blood test given they aren’t willing to say levels could mean I’m now overactive instead which more dangerous.

The folic hasn’t helped my symptoms whatsoever except I would say have managed to eat abit more therefore some weights actually stayed on this week overall.

They’re saying I’m not anemic but that also doesn’t stack & think dizzy spells are worse for this folic acid.

Please keep me updated, will follow you if that’s ok

C Xx

[Missfolic63 in reply to Country_Bumpkin87]

Yes absolutely OK.. yes I'm signed off work 6 weeks now literally bed bound as as soon as I do something I'm lightheaded.. also have breathlessness on stairs or doing almost anything .had a clear chest xray .I literally feel animic and just been left to get in with it with a folic acid pill that is proving useless ...falling out with friends as they don't understand one said yesterday when she rang your not in bed on this sunny day go for a walk! I said I feel faint why would I go outside walking ..her reply probably because all you do is lay down lately Being friends for many years i would think she would know I've never in my life been lazy .15 years ago I had breast cancer and carried on going out walking etc after chemotherapy. This is 10 times worse than the treatment I had .I've never been signed off work yet I am now .

[Country_Bumpkin87 in reply to Missfolic63]

Messaged you- hopefully received as haven’t used much before x

[Sleepybunny]

Hi,

I just wrote a really long reply to you and accidentally deleted it.

I left a lot of detailed info in threads below which might be useful.

Might be best to read a little bit every day over a couple of weeks so it's not so overwhelming.

Some links may have details that could be upsetting to read so you may want to read through it with a supportive friend or family member.

"b12 was 258"

Was this test a serum (total) B12 test?

Do you have a reference range and units for it?

A typical range for serum B12 in UK would be (200 - 900 ng/L) but can vary.

Or an Active B12 (holotranscobalamin) test?

Typical range would be (25 - 70pmol/L) but can vary.

You mention you are getting treatment for folate deficiency and that you suspect B12 deficiency as well.

Maybe you could nudge GP to look in their BNF book at the entry on folic acid. If they look in the Management section it says that treating folate deficiency without treating a co-existing B12 deficiency can lead to neurological problems.

BNF stands for British National Formulary.

This info can be found online by searching for "BNF folic acid".

I'm not medically trained but my simple explanation is .....

Both B12 deficiency and folate deficiency can lead to red blood cells that are larger than normal. This is called macrocytosis.

If a person with both deficiencies is given just folic acid then normal sized red blood cells will be produced but the neurological effects from B12 deficiency will continue.

UK B12 websites

Pernicious Anaemia Society ( a UK charity)

PAS membershp is separate to membership of this forum.

pernicious-anaemia-society....

Has useful leaflets, support groups, members helpline, page for health professionals, webinars etc.

B12info.com

b12info.com/

Run by UK campaigner on B12 deficiency issues.

Lots of useful info and interesting blogs.

b12info.com/blog/

B12d.org

Has online talks about B12 deficiency and monthly coffee mornings near Durham.

b12d.org/event/

The B12 Society

theb12society.com/

Has useful lists of symptoms and causes.

Coeliac disease

With folate deficiency and below mid range serum B12, I'd expect GP to have tested you for coeliac disease.

Coeliac UK has useful info on diagnosis.

coeliac.org.uk/information-...

If you've been tested in past and had a negative or normal range blood test result, I still think it's worth reading Coeliac UK info and searching for this document "NICE guideline Coeliac disease".

People with coeliac disease can get a negative result if they have IgA deficiency or weren't eating enough gluten.

Thread about tests for PA and B12 deficiency

healthunlocked.com/pasoc/po...

I left detailed replies in these threads.

Help Needed! Have I got Pernicious Anaemia?

(One of my replies includes a list of info to help GP)

healthunlocked.com/pasoc/po...

These next threads have links to help those struggling to get treatment/diagnosis in UK.

Patient Safety

healthunlocked.com/pasoc/po...

Is this the tip of the iceberg?

healthunlocked.com/pasoc/po....

I'm not a health professional just someone who suffered for years from unrecognised and untreated b12 deficiency.

[Missfolic63 in reply to Sleepybunny]

Thank you for all the information I will look through it later one thing stood out for me i do have the large red blood cells always feel breathless even talking .had chest xray ECG both clear ..the doctor has said next will be looking lower gut etc. B12 deficiency runs in my family I thing 258 is not higher enough for me or thsts it's actually lower being masked by low folate. Its all very long to get diagnosed as these doctors just won't have people get these symptoms from b12 or folate deficiency.

[Sleepybunny in reply to Missfolic63]

"as these doctors just won't have people get these symptoms from b12 or folate deficiency"

Do your GPs have a list of all your symptoms especially all your neuro symptoms.

I gave GPs a copy of one of the PAS (Pernicious Anaemia Society) lists below and added extra symptoms at bottom of page.

PAS symptoms list - aimed at public

pernicious-anaemia-society....

PAS symptoms list - aimed at health professional

pernicious-anaemia-society....

Other B12 deficiency symptoms lists

b12info.com/signs-and-sympt...

theb12society.com/signs-and...

"B12 deficiency runs in my family"

PA and Coeliac disease are autoimmune conditions that can run in families.

Risk Factors/Causes of PA and B12 deficiency

pernicious-anaemia-society....

theb12society.com/causes-an...

b12info.com/whos-at-risk/

b12info.com/causes/

"the doctor has said next will be looking lower gut etc"

Both PA and Coeliac disease can lead to autoimmune gastritis (AIG). Gastritis is inflammation of stomach lining.

Some people on this forum are given acid suppressing PPI drugs such as omeprazole because their doctors think they have high levels of stomach acid and they then find out that they actually have low levels of stomach acid.

Hypochlorydia is the medical term for low stomach acid.

Achlorydia is the medical term for no stomach acid.

Hypochlorydia and achlorydia are common in people with pernicious anaemia.

The symptoms of high and low levels of stomach acid are very similar.

NHS link mentions high levels of stomach acid.

nhs.uk/conditions/heartburn...

This link mentions low levels of stomach acid.

drmyhill.co.uk/wiki/Hypochl...

This link mentions a bicarbonate burp test that some people do at home. It can give clues as to whether low stomach acid is likely.

avogel.co.uk/health/digesti...

There might be some useful info on GUTS UK website.

gutscharity.org.uk/

"one thing stood out for me i do have the large red blood cells"

Patient Info website have good articles on macrocytosis.

This one is aimed at patients.

patient.info/allergies-bloo...

This one is aimed at doctors.

patient.info/doctor/macrocy...

"Its all very long to get diagnosed "

PAS did a survey some years ago and it showed that some of their members waited ten years or more to get a diagnosis of PA.

Have you considered joining PAS?

You don't need to have a PA diagnosis to join them.

PAS article about diagnosis

pernicious-anaemia-society....

Other useful info in threads at bottom of my first reply.

[BirdlessBox]

There is about 40% or more of the population that had difficulty processing folic acid into folate. Try a Methyl folate supplement and see if that works better for you.

I agree your B12 test result is on the low side; hopefully it won't be allowed to drop further.