Folate deficiency : Morning all I hope everyone... - Thyroid UK

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Folate deficiency

Shazy-B
Shazy-B

Morning all I hope everyone is well! So what a palava I’m having at the moment to cut a long story short my migraines have been getting progressively worse since October to the point I had to attend A&E on Thursday, I was awoken at 6.30am with the most horrendous pain in the left side of my head and could hardly stand because I was so nauseous and dizzy. I have had this previously on the right side also waking me at 3 am but without the nausea/dizziness and it was suggested it could be occipital neuralgia. This pain is different to my classical migraine with aura symptoms which I’ve been having once/twice per week additionally.

On my last 3 visits to my GP and also the A&E attendance my blood pressure has been extremely high which is very unusual for me as it’s usually on the low side of anything. I’m wondering if anyone knows much about folate deficiency and whether this could be causing my problems?

A&E

Right 167/101

Left 103/101

I was tested privately in October and it came back as deficient but my GP insisted it was normal. I was tested again (NHS) 2 weeks ago and low and behold it has come back as deficient 2.8 so I am now on 5mg of folic acid again, the same thing happened last year and I had to supplement for 4 months then too.

My TSH has gradually gone back down to 1 after being put back on 100mcg from 75mcg, I was thought to be over medicated as my TSH was suppressed at 0.25 so my GP in her wisdom thought it necessary to reduce my dose...to my detriment I feel!

Any advice is much appreciated and very welcome, I’m really fed up of feeling so ill at the moment this has gone on for so long.

23 Replies
Hidden
Hidden

Folate deficiency causes many problems, including neurological issues which would cause occipital neuralgia. You need to supplement Folate but you mustn’t do so until you’ve had your B12 checked.

If B12 is also low, which I suspect it will be, you must increase those levels first. If you don’t the increasing levels of folate could mask low B12 which is a significant cause of neurological deficit.

helvella
helvellaAdministrator in reply to Hidden

The discussion has gone beyond masking B12 deficiency - which it can do. It is also suspected of precipitating subacute combined degeneration of the spinal cord.

B12 checking is, I agree, vital.

Hidden
Hidden in reply to helvella

Glad to get that information. Thank you. 😊

Shazy-B
Shazy-B in reply to helvella

Thanks Helvella. Is it the active B12 that shows the correct levels or something else?

Shazy-B
Shazy-B in reply to Hidden

Thank you for your reply according to my GP my B12 is normal at 500, I also had it tested privately in October I will attach the image.

Hidden
Hidden in reply to Shazy-B

What was the top of range Shazy? It may be ‘normal’ but not optimal. As you can see it’s fairly low in range. I supplemented when mine was as low as that

Shazy-B
Shazy-B in reply to Hidden

So do you think it would be beneficial for me to take a sublingual B12 alongside my folic acid or should I get tested first?

Hidden
Hidden in reply to Shazy-B

Get it tested first. I’m not a betting woman but I would say it’s not in range. Even the pictorial result indicates that.

If you were taking 5 mg of folate with B12 levels like that it’s not good news.

helvella
helvellaAdministrator in reply to Hidden

That B12 result looks very much in range!

Bear in mind, B12 ranges tend to go quite a lot higher than "absolutely fine". Largely because there is no issue with B12 being high until it reaches the "very high" area when it could indicate various issues.

Hidden
Hidden in reply to helvella

You are right. The diagram threw me🥴Apologies Shazy-B for misinformation 🙁

SeasideSusie
SeasideSusieAdministrator in reply to Hidden

Hidden

The Active B12 range is 37.5 - 188 (Thriva and Medichecks, maybe others as well).

Hidden
Hidden in reply to SeasideSusie

Thank you Susie. I’ve confused myself because I’ve never had an Active B12. Don’t think GPs do them do they?

SeasideSusie
SeasideSusieAdministrator in reply to Hidden

No, GP test is Total 12, not sure if Active B12 can be done in secondary care.

Hidden
Hidden in reply to SeasideSusie

Mine was Total when in hospital (Neurology) which I though was particularly stupid as it’s so relevant.

helvella
helvellaAdministrator

Could you clarify please?

Are you saying that you were on 5 milligrams of folic acid/folate last year for four months. Then stopped?

If so, I cannot understand why you were not advised to continue with the "safe" dose of 400 micrograms a day indefinitely.

High doses of folic acid/folate can cause many problems and should only be prescribed when absolutely needed. But most of us can take 400 micrograms a day without any problems. Doing so helps to maintain a reasonable level and can be continued pretty much forever.

Shazy-B
Shazy-B in reply to helvella

I was taking 5mg of folic acid from January to April last year and wasn’t tested again until July when I was told it was normal again (10) then gradually I have become more unwell since the beginning of October. I was never advised to take a maintenance dose.

Hidden
Hidden in reply to Shazy-B

Oh dear. As helvella will confirm, you have to maintain at lower dose or it will plummet.

By the way, did you have any problems / side effects with the 5 mg dose?

Shazy-B
Shazy-B in reply to Hidden

I don’t recall any side effects when taking the folic acid last time, I’ve only been back in them for about a week at the moment and I’m not sure now whether they’re causing the issues or if it’s my raised blood pressure. I’ve had a headache (tight band around my head) since the incident on Thursday. I would honestly be lost if not dead without this forum! I have no faith or trust in GP’s with my health anymore 😔

Hidden
Hidden in reply to Shazy-B

I had lots of issues - as many of us do. Agitation, insomnia, raised BP, headache, raised HR

My folate was below range but I’m managing to increase it quite quickly on the 400 mcg dose

helvella
helvellaAdministrator in reply to Shazy-B

I found this detail of possible side effects:

4.8 Undesirable effects

Folic acid is generally well tolerated although the following side effects have been reported:

Blood and lymphatic system disorders:

Folic acid may worsen the symptoms of co-existing vitamin B12 deficiency and should never be used to treat anaemia without a full investigation of the cause.

Immune system disorders:

Rare: Allergic reactions, comprising erythema, rash, pruritus, urticarial, dyspnoea, and anaphylactic reactions (including shock).

Gastrointestinal disorder:

Abdominal distension, flatulence, anorexia and nausea.

medicines.org.uk/emc/produc...

However, such lists are never going to be complete!

helvella
helvellaAdministrator in reply to Shazy-B

Roller coaster medicine - again.

High dose - with the possibility of side effects. Then nothing. Then high dose again.

I'm trying not to make assumptions, but it is at least feasible that a maintenance dose (typically 400 micrograms a day) would have kept your folate level up. It would not usually be prescribed at that level but is available as one of the least expensive supplements in supermarkets. For example, Morrisons:

Valupak Folic Acid 400ug Tablets 90 per pack £1

After all, it is likely you were not getting enough from your diet when you started the high dose (for whatever reasons - not pointing my finger at you) otherwise you would not have needed that prescription. So it stands to reason your level will drop when you stop.

Hidden
Hidden in reply to helvella

My 5 mg dose was prescribed by neurologist. Think my GP was surprised. He put me on 400 mcg which I now buy myself.

5 mg doses are more often used in serious neurological disorders or folate depleting cancers.

‘More’ is not always better - especially with B vits

SlowDragon
SlowDragonAdministrator

When adequately treated on levothyroxine TSH is frequently below range. Never agree to dose reduction based just on TSH. If Ft3 wasn’t over range you weren’t over medicated

Have you tried folate rather than folic acid

Difference between folate and folic acid

chriskresser.com/folate-vs-...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.

This can help keep all B vitamins in balance and will help improve B12 levels too

B vitamins best taken after breakfast

Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)

Or Thorne Basic B is another option that contain folate, but is large capsule

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Looking at recent full tests, vitamin D was too low as well. Presumably you are supplementing to improve

Are you on strictly gluten free diet?

Or dairy free diet?

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