Thyroid levels haywire : Hi me again, just had my... - Thyroid UK

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Thyroid levels haywire

vickilou profile image
26 Replies

Hi me again, just had my blood results back, Serum T4 level 23.8pmol/L 9.0-23.0 Serum TSH 2.65miu/L 0.25-5.00 these were done on 6th May2020. any help appreciated. My last blood test results were done on 27th feb 2020 and they were Serum T4 level 21.1pmol/L 12.0-22.0 Serum TSH level 4.56miu/L 0.27-4.20 they increased my levothyroxine medication at this point. Now its totally gone the other way. Any help appreciated please.

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vickilou
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greygoose profile image
greygoose

I wouldn't say your levels have gone the other way. Your TSH is still too high, and your FT4 is still quite high, so your FT3 is probably low. Do you know how well you convert? You cannot get the full picture without an FT3 result.

Lalatoot profile image
Lalatoot

It hasn't gone the other way. Your FT4 went up because you were taking more T4 hormones. In response your TSH went down as it should do when there are more thyroid hormones in the blood. This is how the system should work.

However your TSH is still high for someone on levothyroxine. I would begin to question how well you are converting the T4 into T3. I would advise blood tests with TSH, FT4 and FT3 done at the same time. That way you can compare the FT4 and FT3 levels to look for a conversion problem.

vickilou profile image
vickilou in reply toLalatoot

Thank you, trying to get the doctors to do a ft3 test is like getting blood out of a stone. However i am having to have a blood transfusion on Thursday because my HB level is very low at 73 maybe i can persuade my hematologist to run the tests as a suffer from heamolitic anemia as a result of my long term thyroid problem. So ive been told. Ive also just had a hysterectomy and removed my tubes and overies so wondering if all this is connected to lacking hormones.

SlowDragon profile image
SlowDragonAdministrator

Looking through previous posts couldn’t see if you have Hashimoto’s or not

How much Levothyroxine are you now on?

Do you always get same brand of levothyroxine

What vitamin supplements are you currently taking

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

Ask GP to test vitamin levels

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)

Is this how you do your tests?

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

List of private testing options

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin

medichecks.com/products/thy...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

vickilou profile image
vickilou in reply toSlowDragon

Thank you for replying, i will properly reply tomorrow.

vickilou profile image
vickilou in reply tovickilou

Hi slow dragon, no i don't have hashimoto's, just underactive thyroid, i have used medichecks a couple of times and gave the results to my gp, who has no idea about thyroid problems and could not even read the test results the right way round. I have asked to be referred to an endocrinologist, but the response i got was in letter from. Sorry but we will not be testing you for T3 because someone of your age who has been taking levothyroxine for so many years the results would tampered by this and would not give a true result, and we feel that it is unnecessary to see you at this point. I was fuming, but as you can see they have no intention of wasting their money on me at the ripe age of 57years young. My heamatologist is my best option on Thursday when I have my transfusion, he has been more helpful than most ive seen lately. After my hysterectomy i had a atrial tachycardia problem, ie my pulse shot up and I ended up on the cardiac unit, however after various scans they couldn't find anything wrong with my heart and my rhythm went back to normal as quickly as it had shot up. My body is causing me so many worries lately, but at least im just about standing. I think its all connected to me having the under active thyroid problem and now ive got another immune disorder on top. Sorry for the long post. But thanks for your help.

pennyannie profile image
pennyannie in reply tovickilou

Hey there Vickilou :

Just wanted to send you a hug as I'm upset and angry to read this letter which is absolute bull - you can finish the sentiments for yourself :

vickilou profile image
vickilou in reply topennyannie

Thank you pennyanne, same back we all need a hug even though its a virtual one x

SlowDragon profile image
SlowDragonAdministrator in reply tovickilou

Looking at previous posts I would strongly suspect your hypothyroidism is autoimmune

You are diagnosed with other autoimmune disease and endometriosis

Vast majority of members on here are forced to get FULL Testing privately to make progress

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

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)

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

List of private testing options

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin

medichecks.com/products/thy...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

Just testing TSH and Ft4 is completely inadequate

Come back with new post once you get results

vickilou profile image
vickilou in reply toSlowDragon

Thank you i will attempt to get heamatologist to run these for me, if not i will pay for them myself and report back.

vickilou profile image
vickilou in reply toSlowDragon

Hello Slow dragon i had these tests done by Thriva, Vit D 46nmol/L. TPOAb 21kIU/L Thyroxine T4 124nmol Free tyhroxine (FT4) 21 pmol/L FT3 4.9 pmol/L optimal TSH 4.04mlu/L ( TgAB) 22.1 kU/L Folate could not be done apprantley my blood cells burst Ferratin 811ug/L Active B12 71pmol/L The TSH is higher than last time but they are saying its normal. And they are saying all normal apart from Vitamin D, could you shed some light please. Thank you in advance,

SlowDragon profile image
SlowDragonAdministrator in reply tovickilou

Sorry

Can you add the ranges after each result ....or if this is medichecks test I know the ranges

vickilou profile image
vickilou in reply toSlowDragon

Sorry will have another look wish i could work out how to send you pictures, but they were done by Thriva labs. But will check again.

SlowDragon profile image
SlowDragonAdministrator in reply tovickilou

You can't add photo in a reply

You could start a new post ....add photo in there

More people would see it then as well

SlowDragon profile image
SlowDragonAdministrator in reply tovickilou

Vitamin D is far too low at 46nmol

Are you on any vitamin D supplement?

Ferritin - Did you mean 81

SlowDragon profile image
SlowDragonAdministrator in reply tovickilou

Sorry missed that test was done by Thriva - can you add ranges then

Was this test done early morning before eating or drinking any thing apart from water and last dose levothyroxine 24 hours before?

How much levothyroxine are you currently taking since increased in Feb ?

Do you always get same brand of levothyroxine

SlowDragon profile image
SlowDragonAdministrator in reply tovickilou

So antibodies are negative

But 20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Low vitamin D obviously needs improving and GP should prescribe 1600iu everyday for 6 months....but probably best to self supplement

GP will often only prescribe to bring levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol

leedsformulary.nhs.uk/docs/...

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

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

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

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

ncbi.nlm.nih.gov/pubmed/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 via 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

It’s trial and error what dose we need

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

SlowDragon profile image
SlowDragonAdministrator in reply tovickilou

Was this test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test?

TSH 4.04

Free T3 4.9 (3.1 - 6.8)

Free T4. 21 (12 - 22)

Ft4 90% through range

Ft3 only 49% through range

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

Getting all four vitamins optimal helps improve conversion of Ft4 to ft3

Selenium supplements can help improve conversion too

Strictly gluten free diet and/or dairy free diet may help

vickilou profile image
vickilou in reply toSlowDragon

Hi Slowdragon, yes was taken first thing in morning before anything to eat or drink and hadn't taken my levothyroxine. I take 100mcg one day and 125mcg the next and this is since my last blood results.

SlowDragon profile image
SlowDragonAdministrator in reply tovickilou

What vitamin supplements were you taking?

vickilou profile image
vickilou in reply toSlowDragon

I havnt taken any because my doctor has not checked for vitamin deficiency and wont. My ferritin level was 881 which is extremely high, i am just trying to get as much information to show to my doctor, as she really has no clue how to read thyroid results. My heamatologist says he is not trained in thyroid problems either. So its like banging my head against the wall.

SlowDragon profile image
SlowDragonAdministrator in reply tovickilou

So you need full testing for Hemochromatosis

Excess iron can be cause of hypothyroidism

stopthethyroidmadness.com/h...

academic.oup.com/endo/artic...

redriverhealthandwellness.c...

pubmed.ncbi.nlm.nih.gov/182...

functionalhealthnews.com/20...

stopthethyroidmadness.com/h...

SlowDragon profile image
SlowDragonAdministrator in reply tovickilou

So did Thriva not flag up very high ferritin?

vickilou profile image
vickilou in reply toSlowDragon

Yes they did, im having my bloods done next week for my heamatologist, so i will ask him to check me for the tests also you suggested. I was reading about this the other day.I don't know if its of any consequence, but i only have to be out in the sun for 5mins and I go really brown, people are always commenting on the fact but if i have a really low vitamin d level obviously my body is not absorbing the vitamin d i get. I really appreciate being able to talk to you and ask these questions. Thank you, very much.

SlowDragon profile image
SlowDragonAdministrator in reply tovickilou

Many of us with thyroid issues have genetic issues with vitamin D....called polymorphisms

pubmed.ncbi.nlm.nih.gov/167...

Means we either struggle to make vitamin D at all, or we use more than average person

chriskresser.com/the-role-o...

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.

I recently had my DNA evaluation done

.....there are roughly 12 genetic snips associated with vitamin D ...

I have genetic issues with 9 of them

SlowDragon profile image
SlowDragonAdministrator in reply tovickilou

Hemochromatosis is associated with Celtic ancestry

irishtimes.com/news/health/...

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