Could anyone shed light on what could be going on - Thyroid UK

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Could anyone shed light on what could be going on

Struggle123 profile image
23 Replies

been showing signs for years of thyroid problems , never out of range (nhs) always on lowest marker

Just had these back last week nothing off doctor

Is it ok my tsh out but rest are in range ? Confused to how it works

Tsh 0.25

T4 15.3

T3 4.1

Thankyou

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Struggle123
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23 Replies
FallingInReverse profile image
FallingInReverse

Hi! Can you provide the specific ranges for each of those?

Also, if you have your previous test results on hand, it would be great to see those and understand the trends. I’m curious, if your Free Ts have always been at the bottom of the range as you note… what has your TSH been?

Struggle123 profile image
Struggle123 in reply toFallingInReverse

hi there I have never had my t3 or t4 done before as I have never been out of range for tsh so docs won’t do them

The range for tsh is 0.27-4.2

Picture is of all past tsh over years

Tsh results
greygoose profile image
greygoose

Hi Struggle 123, welcome to the forum. :)

Difficult to interpret blood test results without the ranges, because they vary from lab to lab.

Although we don't need a range to see that that TSH is low. TSH varies thoughout the day with its highest point around midnight and lowest point around midday. So the time of day you have the blood draw is important. We always recommend just before 9 am and fasting. TSH can also be lowered by cafeine and certain foods. And, unfortunately, doctors only tend to look at the TSH. They have no idea what the other results mean. So, looking at yours, a doctor would be more inclined to diagnose you with subclinical hyper than hypo, even though your thyroid hormone levels are low - TSH is a pituitary hormone.

So, two more things we need to know before anyone can comment:

- The ranges for the FT4 and FT3

- the time of the blood draw

Oh! And have you ever had any antibodies tested? TPOab and TgAB. :)

Struggle123 profile image
Struggle123 in reply togreygoose

The ranges are ft4 12.0-22.0

Ft3 3.1-6.8

Test was at 8.40 and hadn’t eaten

The tsh ranges are 0.27-4.2

greygoose profile image
greygoose in reply toStruggle123

Doesn't matter what the TSH range is, a TSH is always a TSH and should be around 1.

So, the TSH isn't reponding to the Free levels:

ft4 15.3 (12.0-22.0) 33.0%

Ft3 4.1 (3.1-6.8) 27.03%

which should both be around 50% through the range. So, that looks like a pituitary/hypothalamus problem - or what we call Central Hypo. And, by the look of your results going back to 2013, you've had it for some time.

The problem is, very few doctors have even heard of Central Hypo, let alone be capable of recognising it when they see it. They believe the TSH 'tells them all they need to know', which is patently not true. They don't understand the thyroid hormone levels themselves.

So, what you need is an endo that is well up on pituitary problems, but doubtful you'd get one on the NHS because your doctor is unlikely to refer you with those numbers. It's a bit like painting by numbers, the apple is n° 5, n° is red, so apples are red. What they don't understand is that sometimes apples are green, or russet colour. But as the intructions say red, red it is. They cannot, or will not, think outside the box.

Struggle123 profile image
Struggle123 in reply togreygoose

Thankyou so much !

Least I am now armed with something I will find a endo and try to get this sorted. I will speak to my doctor as she has requested to see me because if these results so hopefully she will recognise there is a problem

greygoose profile image
greygoose in reply toStruggle123

You're welcome. :) Let us know how you get on.

Struggle123 profile image
Struggle123 in reply togreygoose

Well went to the doctors … apparently all my levels are fine and I do not need to see a endo.

Even tho I have been going in for over 10 years with symptoms. She even drew me a diagram about the signalling. I said about the percentages t3&4 and that it’s not responding to these so perhaps a signalling issue.

Said she will email and ask if I could be seen but very doubtful . Also she will ask od there is any bloods that they can do now which may help.

So I have just ordered a blood test through blue horizon. I will now wait and hope the endo says they will see me.

greygoose profile image
greygoose in reply toStruggle123

Well, that doesn't surprise me. They're like robots, incapable of thinking outside the box. They've been taught that TSH 'tells them all they need to know' and they cannot - are not capable of - thinking otherwise.

I don't know what other blood tests there could be. Taken altogether, those results tell you all you need to know. Although, testing other pituitary hormones might open her eyes a little, but I don't know if she can do that. She could do an 8 am cortisol, though, but that doesn't prove anything except that further investigation into the adrenals might be useful.

Struggle123 profile image
Struggle123 in reply togreygoose

I had a 8am cortisol done years ago and that was 354 doc at time said was ok . I will wait for the lab tests I ordered for my antibodies etc then go back armed lol

greygoose profile image
greygoose in reply toStruggle123

Well, what was done years ago is hardly relevant today. And although 354 was more than likely within the range, it sounds low to me. But, as long as a result is somewhere within a range, doctors think it has to be ok. They don't really know what they're doing.

Struggle123 profile image
Struggle123

hi there Thankyou for your response

T4 ranges are 12-22

T3 3.1-6.8

It was 8.40am and hadn’t eaten

I had a accp antibodies test that result was

1.3

Ranges 0.0 -7. 0

SlowDragon profile image
SlowDragonAdministrator

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once

Very important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

Low vitamin levels, especially low ferritin can cause fatigue

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Struggle123 profile image
Struggle123

thankyou I have low iron and they have issue folate

I will look at further testing see if doctors will do or I need to organise myself as I feel so crappy

SlowDragon profile image
SlowDragonAdministrator in reply toStruggle123

You need to click on reply otherwise other poster doesn’t get notified

How old are you?

Pre or post menopause

what were most recent iron and ferritin results

Are you on iron supplements via GP

cks.nice.org.uk/topics/anae...

Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.

It’s possible to have low ferritin but high iron

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

Stop iron supplements 5-7 days before testing

Medichecks iron panel test

medichecks.com/products/iro...

Look at increasing iron rich foods in diet

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin

oatext.com/iron-deficiency-...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

healthunlocked.com/thyroidu...

Posts discussing Three Arrows as very effective supplement

Great replies from @FallingInReverse

re ferritin and Three arrows

healthunlocked.com/thyroidu......

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Great reply by @fallinginreverse

healthunlocked.com/thyroidu...

Iron patches

healthunlocked.com/thyroidu...

Thyroid disease is as much about optimising vitamins as thyroid hormones

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin

healthunlocked.com/thyroidu...

Iron and thyroid link

healthunlocked.com/thyroidu...

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

Good iron but low ferritin

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Shellfish and Mussels are excellent source of iron

healthline.com/nutrition/he...

Iron deficiency without anaemia

healthunlocked.com/thyroidu...

Ferritin over 100 to alleviate symptoms

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Great research article discussing similar…..ferritin over 100 often necessary

ncbi.nlm.nih.gov/pmc/articl...

Low Iron implicated in hypothyroidism

healthunlocked.com/thyroidu...

Really interesting talk on YouTube, link in reply by Humanbean discussing both iron deficiency and towards end how inflammation can also be an issue

healthunlocked.com/thyroidu...

Inflammation affecting ferritin

healthunlocked.com/thyroidu...

Updated reference ranges for top of ferritin range depending upon age

healthunlocked.com/thyroidu...

Thank you for your incredible patience while you have been awaiting the outcome of our ferritin reference range review. We conducted this with Inuvi lab, which has now changed the reference ranges to the following:

Females 18 ≤ age < 40. 30 to 180

Females 40 ≤ age < 50. 30 to 207

Females 50 ≤ age < 60. 30 to 264l

Females Age ≥ 60. 30 to 332

Males 18 ≤ age < 40 30 to 442

Males Age ≥ 40 30 to 518

The lower limits of 30 are by the NICE threshold of <30 for iron deficiency. Our review of Medichecks data has determined the upper limits. This retrospective study used a large dataset of blood test results from 25,425 healthy participants aged 18 to 97 over seven years. This is the most extensive study on ferritin reference ranges, and we hope to achieve journal publication so that these ranges can be applied more widely.

SlowDragon profile image
SlowDragonAdministrator in reply toStruggle123

what were last B12 and folate results

Struggle123 profile image
Struggle123 in reply toSlowDragon

I’m 48 pre

Folate 2.6 docs given me tablets

B12 461

Ferritin 18

Yes I did get that in the end

Thankyou

SlowDragon profile image
SlowDragonAdministrator in reply toStruggle123

So ferritin and folate deficient

Going to take months to improve low ferritin

What has GP prescribed

Are you vegetarian or vegan?

B12 too low

No vitamin D test result?

test via NHS private testing service

vitamindtest.org.uk

Aiming for vitamin D at least over 80nmol

Retest thyroid levels again 8 weeks time after starting folate

Recommend testing BOTH TPO and TG thyroid antibodies next test - would need to test privately

Struggle123 profile image
Struggle123 in reply toSlowDragon

Gp prescribed folic acid 5mg for 3-4 months one a day

Didn’t do my vit d only ever had that done once in 2022 and was 64 and I do use supplement have done for years.

Ah ok I will look at the list of private labs you gave me then

Thankyou

SlowDragon profile image
SlowDragonAdministrator in reply toStruggle123

vit d only ever had that done once in 2022 and was 64 and I do use supplement have done for years.

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But, improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly when supplementing

Can test via NHS private testing service

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7.

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

Vitamin D and thyroid disease

grassrootshealth.net/blog/t...

Vitamin D may prevent Autoimmune disease

newscientist.com/article/23...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Recipe ideas

bbc.co.uk/food/articles/mag...

Interesting article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

SlowDragon profile image
SlowDragonAdministrator in reply toStruggle123

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement

After you finish prescription folic acid suggest you look at adding a separate vitamin B Complex 

Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.

If Vegetarian or vegan likely to need ongoing separate B12 few times a week

Highly effective B12 drops

natureprovides.com/products...

Or

B12 sublingual lozenges

uk.iherb.com/pr/jarrow-form...

cytoplan.co.uk/shop-by-prod...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

Low folate

on going as maintenance dose

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

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

Difference between folate and folic acid

healthline.com/nutrition/fo...

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

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose

Post discussing different B complex

healthunlocked.com/thyroidu...

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay

IMPORTANT......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...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

helvella.blogspot.com/p/hel...

humanbean profile image
humanbean

Your results are poor and I agree with others who have mentioned Central Hypothyroidism as a possible explanation for your results.

You might find these links helpful :

healthunlocked.com/thyroidu...

endocrinologyadvisor.com/dd...

Struggle123 profile image
Struggle123 in reply tohumanbean

Thankyou

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