Folate levels : Hi I’ve just had my thyroid... - Thyroid UK

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Folate levels

Lo06
Lo06

Hi I’ve just had my thyroid tested again & it came back ok my folate levels are 2.4 I have been on folic acid before for a few months then they took me off them & now I’m bk on them I also have hypothyroidism I feel achy & washed out any advice?

20 Replies
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SeasideSusie
SeasideSusieAdministrator

Lo06

Can you please post the results and reference ranges for all the tests you've had so that we can try to identify any problems. If you don't have them then please ask the receptionist (not the doctor) at your surgery for a print out (not verbal or hand written results as mistakes can happen).

In your first post on the forum here

healthunlocked.com/thyroidu...

you were given lots of advice about your dose of Levo, when retesting should be done, what tests are needed for a full picture - thyroid and vitamins - and links to tests offered by different labs.

* Have all the tests been done?

* Have you had an increase in Levo dose?

* Did you retest Vit D as advised?

Lo06
Lo06 in reply to SeasideSusie

No none I have told them my symptoms but I feel like I’m hitting a brick wall I asked for vit D levels to be checked but I think they assumed because I’m already on 1000iu I’m ok & my thyroid has come bk ok no increase for over a year

SeasideSusie
SeasideSusieAdministrator in reply to Lo06

Lo06

You were given details of private testing if you couldn't get everything done at your GPs. Hundreds of us here have to do this due to inadequate testing and treatment from our GP. Unfortunately you wont get very far if you leave it all to your GP, we have to take things into our own hands sometimes.

Lo06
Lo06 in reply to SeasideSusie

I just rang my surgery & the receptionist was very rude when I asked for my recent blood test results she asked what I wanted them for ?? Also I can’t afford to pay private for these tests

Lora7again
Lora7again in reply to Lo06

This makes my blood boil when someone who is not medically trained asks questions why you have requested to see your blood results. It is the law and you are entitled to view all your records and results. We have Patient Access at my surgery so I can just log in and read them so I don't have to even talk to the receptionist who is just a "pen pusher" . Check if your surgery has this and you won't have to talk to the rude receptionist about them.

nhs.uk/using-the-nhs/about-...

Lo06
Lo06 in reply to Lora7again

It’s disgusting the way they speak to people they have online access but I think you’ve got to take ID into the surgery

Lora7again
Lora7again in reply to Lo06

Yes, I think I filled a form in and showed them my passport. I was then sent a login code by letter. I recently read my records and I had a run in with one of the receptionists and she had commented on my records about me being difficult. I only asked for a print out of my blood results and she wouldn't give them to me so I then told her it was the law. Very annoying that she was allowed to put something on my records which did not tell the whole story. She has now left the surgery .... good riddance! lol

Lo06
Lo06 in reply to Lora7again

So have I done the wrong thing by ringing them and asking them to print out my recent blood test 😂🤔

Lora7again
Lora7again in reply to Lo06

No but if you have Patients Access you can print them off yourself if you need to.

C70rol
C70rol in reply to Lora7again

Could you please tell me the brand name of your folic acid please? I needed to increase my folate for my raised B12 level and it really upset me!!

So I would really appreciate knowing which folic acid you used?

Thank you.

Lo06
Lo06 in reply to C70rol

No probs Accord the brand name is

C70rol
C70rol in reply to Lo06

Sorry to come back to you but did you get it on prescription or over the counter. I really need to get hold of some .

Thanks.

Lo06
Lo06 in reply to C70rol

Prescribed

humanbean
humanbean in reply to Lo06

So have I done the wrong thing by ringing them and asking them to print out my recent blood test

No. None of us can manage our condition(s) without information. I suspect lots of us have insults and unjustified labels on our records. I know I have, and they've been there for decades.

SeasideSusie
SeasideSusieAdministrator in reply to Lo06

Lo06

the receptionist was very rude when I asked for my recent blood test results she asked what I wanted them for ??

In the UK we are legally entitled to them under the General Data Regulations and the receptionist has no right to question why you want them. If you feel obliged to say anything then you just say "For my own records" and remind her that she is acting illegally if she is refusing to give your the results.

Unfortunately, you wont get any further without results for a full thyroid panel and, preferably, testing vitamins as mentioned by both myself and SlowDragon

SlowDragon
SlowDragonAdministrator

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.

Link re access

healthunlocked.com/thyroidu...

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.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

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

Have you had thyroid antibodies tested

Ask GP to test vitamin D, B12 and ferritin levels

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)

Standard STARTER DOSE OF LEVOTHYROXINE is 50mcg

Looking at previous posts you are only on 25mcg/50mcg alternate days?

Or has dose been increased yet?

Levothyroxine doesn’t “top up” failing thyroid it replaces it

So it’s ESSENTIAL To be taking high enough dose

Aim of levothyroxine is to increase the dose slowly upwards in 25mcg steps until on approx full replacement dose. Unless extremely petite this is likely to be at least around 100mcg levothyroxine per day

guidelines on dose levothyroxine by weight

Even if we don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.

RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

SlowDragon
SlowDragonAdministrator

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/signs-symptom...

Politely insist that vitamin D and thyroid antibodies are tested alongside retesting thyroid levels

Just testing TSH is completely inadequate

ncbi.nlm.nih.gov/pubmed/286...

Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.

endocrine-abstracts.org/ea/...

Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.

SlowDragon
SlowDragonAdministrator

Also this document

sps.nhs.uk/wp-content/uploa...

See page 13

Suggest you print out and highlight point 1 in box marked indicators

1. Where symptoms of hypothyroidism persist despite optimal dosage with levothyroxine. (TSH 0.4-1.5mU/L)

Your TSH is too high because on too small a dose levothyroxine

SlowDragon
SlowDragonAdministrator

Also this last document

1. Where symptoms of hypothyroidism persist despite optimal dosage with levothyroxine. (TSH 0.4-1.5mU/L)

Clearly indicates you need dose increase in levothyroxine

Low folate means that your body cannot use the b12 that you have, they work together, have a look at b12 deficiency symptoms.

Folate should be ideally in the top quarter of the reference range. Always get supervision/testing, but folate is water soluble and safe.

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