continuing low folate levels: Hi I have had... - Thyroid UK

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continuing low folate levels

Dann1211 profile image
10 Replies

Hi

I have had under active thyroid for about 10 years. In July last year I was treated for low folate and ferretin levels. My hb was fine. Anyway, I took the folic acid for 3 months and the ferrous sulphate for 6 months. I finished the folic acid about 3 months ago. I have had a call from the dr tonight to tell me there is another course of folic acid to collect as my folate was low. Apparently the rest of the tests haven't come back yet.

I'm so worried as to why the 3 months I've already had of folic has not helped. My anxiety levels are so high

Could it be something serious that is keeping the levels low?

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Dann1211
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10 Replies
SeasideSusie profile image
SeasideSusieRemembering

Dan1211

It's often the case when we have nutrient deficiencies that once levels are brought back into range then we need a maintenance dose to keep them there. Doctors tend to prescribe just to bring levels back into range then it's up to us to buy our own supplement as ongoing maintenance.

If we have deficiency in one nutrient we often have low levels of others.

B12 and Folate work together. Has B12 been tested?

And Vit D?

What's happenened about your Ferritin?

Do you have autoimmune thyroid disease aka Hashimoto's?

Dann1211 profile image
Dann1211 in reply toSeasideSusie

Hi. Thanks for your reply. I had low ferretin 6 months ago and took iron tablets which I only finished last week. On that blood test the b12 was in range at the higher level. The receptionist said she has not had the ferretin or vitamin d levels back yet only the folate which was low.

It does make sense really to take a maintance dose so hopefully that may be the reason it has dropped again

I don't know if it's the thyroid or folate that causes such extreme health anxiety but I feel so worried at the moment.

All I've ever been told About my thyroid is that I'm under active and since taking thyroxine 125 mg I've always been in range

SeasideSusie profile image
SeasideSusieRemembering in reply toDann1211

Anxiety is a symptom of hypothyroidism.

What are your latest results?

Always get a print out of your results from the receptionist a few days after doing your test.

Post results, including the reference ranges, for members to comment . "In range" doesn't necessarily mean optimal.

Tara05 profile image
Tara05 in reply toDann1211

I'm not on thyroid meds, but I was prescribed folic acid as that was low, B12 is probably low again now as I'm due a blood test. I took Folate, well, tried to but I wanted to tell you that it put my anxiety levels through the roof! I reduced it, but had to stop it. There is evidence of this reaction in some people. I am a trained nutritionist and I know that B12 is often required before Folate supplementation. So many people have low B12, the ranges in this country are ridiculous. I always get a copy of test results, some time ago my Ferritin was very, very low and Doctor never even told me😠. For me, it's getting blood tested in the first place that's a struggle if I could afford it I would always use Medicheck, preferably finger prick test as they have so much trouble getting blood😔.

SlowDragon profile image
SlowDragonAdministrator

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Do you have high thyroid antibodies?

Ask GP to test thyroid antibodies if not been tested yet

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

How much levothyroxine are you currently taking?

Do you always get same brand of levothyroxine?

Please add your recent thyroid results if you have them

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

sarosent profile image
sarosent

Are you taking folate, or folic Acid? Many can't convert the synthetic folic acid to the active version due to a defect, MTHFR. If they are testing folate, but you're taking folic acid, that could be the problem ?

Can't type much on phone but look into that, or maybe someone else can reply with more info.

What is 'hb' ?

Some people cannot metabolise folic acid and need methylfolate which the NHS won't provide. For some, taking folic acid actually make things worse

Dann1211 profile image
Dann1211

Hi thanks for all your replies.

I have had a nightmare with my g.p. Today

I've had 4 different calls from g.p.reception today. One told me my iron was low and that they had a script for folic acid tabs??? Then another called to say my folate was low but ferretin was ok. Then I had another call to say my vitamin d level was low and there was a script for Hux d3. In the end I went there and they refused to give me a copy of my blood results until I'd seen a gp. They have no appts for GP so i have to call them nearer the end of the week even though they say I have no need to see him.

I registered online and see my blood results

Ferretin was 38. It was 19 6 months ago

Folate is 3.8 it was 3 6 months ago

And vit d is 17

As for my thyroid they never tested as they say it was not due to be done as it was fine 6 months ago

So now I have folic acid 5mg for 3 months and Hux d3 10 of them which I'm to take once a week

I'm quite happy to take them but all I wanted to know was if this is normal to have 2 courses of folic acid. Should not the 1 course have been enough?

helvella profile image
helvellaAdministrator in reply toDann1211

I am no expert on folate/folic acid, but...

The underlying story is what we see time and again. Someone is given a supplement because they are low. Then they stop taking it (whether they are tested and now seem OK, or just run out).

A few months later, they are low in that same thing again. What a surprise! Usually, nothing whatsoever has been done to change or rectify the reason for being low.

Same thing happens with numerous things - not just folate but also iron.

It might have made much more sense for you to have been prescribed (or even advised to take) something like 400 micrograms of folic acid on a long-term basis. Or, if your diet is low in folate, consider why and make appropriate changes.

yesendi profile image
yesendi

Have you tried going the natural route? Eating lentils brings some critical nutrients up such as folate, iron, magnesiun and some B vitamins. One single cup of cooked lentils provides you with 100% of you daily intake of folate I believe.

I just had my B12, Ferritin tested and all came back good. I eat lentils almost everyday.

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