Old test results just received from doctors....... - Thyroid UK

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Old test results just received from doctors....any help much appreciated

diagnosed2013 profile image
5 Replies

Hi...I've just asked my gp surgery for test results going back a bit further (had previously only asked for this year) & my folate back in Nov '22 was 5.6 ug/L ref range (3.90-26.80 ug/L obviously says normal no action, but it's low. Looking at the result of 5.6 folate should I have been taking a folate supplement? I've just been to have another blood test done with full anemia panel, kidney function etc the nurse said & vitamin D, B12 etc...so should I have maybe been taking folate since 2022? My symptoms have been worse since 2021/2022.

So my thyroid back in Oct 2012 when first diagnosed tsh was 7.7 (0.25-5) & free T4 was 12.6 (12-25)

Jan 2013 just T4 tested & that was 14.5...no tsh done that time?

Then in May 2013 after taking levo 50mg tsh was 4.18 & no other tests done & no tsh tests with that one.

So in 2016 I thought I was well & stopped taking thyroxine & havent had had anythingfor my thyroid since... in 2018 i had a total abdominalhysterectomy to remove a large fibroid....but thinking now that lots of my health issues are probably thyroid related. Will update with new test results when I get them.

I still feel so rubbish & think there's a few things going on like thyroid & low folate etc...hopefully these tests will find something.

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SlowDragon profile image
SlowDragonAdministrator

So in 2016 I thought I was well & stopped taking thyroxine & havent had had anythingfor my thyroid since.

Have you tested thyroid and vitamin levels since stopping levothyroxine

Then in May 2013 after taking levo 50mg tsh was 4.18 & no other tests done

50mcg was only standard starter dose levothyroxine

On levothyroxine the aim is to increase dose slowly upwards in 25mcg steps until symptoms improve/disappear

When adequately treated TSH will usually be around or below 1 and Ft4 at least 60-70% through range, hopefully Ft3 at similar level

ESSENTIAL to test and maintain GOOD vitamin D, folate, B12 and ferritin levels

When hypo low vitamin levels extremely common

cks.nice.org.uk/topics/hypo...

bnf.nice.org.uk/drugs/levot...

nhs.uk/medicines/levothyrox...

Adults usually start with a dose between 50 micrograms and 100 micrograms taken once a day. This may be increased gradually over a few weeks to between 100 micrograms and 200 micrograms taken once a day.

Some people need a bit less than guidelines, some a bit more

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

onlinelibrary.wiley.com/doi...

If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).

sciencedirect.com/science/a...

The optimal daily dose in overt hypothyroidism is 1·5–1·8 μg per kg of bodyweight, rounded to the nearest 25 μg

diagnosed2013 profile image
diagnosed2013 in reply toSlowDragon

Thank you for all your help & great info 👍

humanbean profile image
humanbean

The body does not store folate and so we need to eat it every day in our diets. If absorption of folate is poor or diet is low in folate, levels can end up being low and daily supplementation might be necessary.

Personally, I aim for a folate level of about 20 micrograms/L irrespective of the reference range.

Doctors in the UK usually prescribe massive doses of folic acid to raise folate. But it is not a good form of folate at all. It isn't in a form the body can easily make use of. It has to be converted to a usable form within the body, and about 50% of the global population can't do that conversion efficiently. A much better form of folate is methylfolate, which is already in a form the body can make use of.

Did you know that folic acid was first developed in 1943? Humans haven't evolved over millennia to make use of it. They do much better with the natural/usable form.

The people who can't convert folic acid to methylfolate usually have a problem with their MTHFR genes, and end up with too few "methyl donors". This can have several unwanted effects, and can have knock-on effects on absorption of vitamin B12. It also has unwanted effects on iron absorption, although I'm not sure how that happens.

Some people on the forum have discovered that the ratio of their serum iron to their ferritin is not good i.e. too much iron is in their bloodstream, and too little ferritin. Increasing the number of "methyl donors" improves this.

Please note that a lot of articles and research papers refer to folic acid when they mean folate, and refer to folate when they mean folic acid. It's very annoying. Folate and folic acid are NOT the same thing.

Some links discussing these issues :

drfuhrman.com/blog/16/why-y...

In the following link, make sure to read the section entitled "Let's get technical".

web.archive.org/web/2024022...

chriskresser.com/folate-vs-...

MTHFR issues can affect absorption of B vitamins generally, and everyone should be supplementing active B vitamins if they need them, rather than the cheaper inactive B vitamins :

jigsawhealth.com/blogs/news...

Some people with MTHFR problems feel better if they start with a low dose of methylfolate and work upwards, if they've never taken methylfolate before :

mthfr.net/methylfolate-side...

People who don't have MTHFR problems can dive right in to taking methylfolate - but rather than testing to find out about their MTHFR status they can just start slowly and build up, and they'll be fine.

Websites that sell supplements will almost certainly sell methylfolate.

Personally I take 1000 mcg per day if or when I think I need them. Higher doses are available but I don't want to try them. If I test and my levels are low I'll take 1000 mcg daily for a while. If my levels are middling I'll take 1000mcg for, say, 4 days a week. If my levels are where I want them I'll take 1000 mcg for, say, 2 days a week to maintain it. But what works for me might not match what works for you, so you'll have to experiment.

Some more useful links :

b12deficiency.info/folate-b...

methyl-life.com/blogs/mthfr...

pnas.org/doi/full/10.1073/p...

link.springer.com/article/1...

sciencedirect.com/science/a...

advances.nutrition.org/arti...

diagnosed2013 profile image
diagnosed2013 in reply tohumanbean

Thank you for all the very useful information 👍

Tina_Maria profile image
Tina_Maria

Why did you stop taking levothyroxine completely? Did your doctor advise you to do this and what was the reason for it? When you are on levothyroxine replacement therapy, you are on it for life (with very few exceptions, e.g., if levels normalise after pregnancy). Have you had a blood test that would have indicated that you should stop your therapy?

If you have thyroxine hormone requirements and suddenly stop medication, this could have severe consequences, as thyroid hormones play an important role in our body and are involved in many pathways essential for our health. If you felt ill when you were on medication, you were probably on too low a dose (50mcg is a starter dose) and you would have needed an increase in medication, not stopping it?

Have you got a recent thyroid function test TSH, T4 and T3 you could perhaps share?

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