Blood test results, TSH up and down: New here and... - Thyroid UK

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Blood test results, TSH up and down

Aloha79 profile image
11 Replies

New here and getting lots of great advice after almost a year of not feeling right, and some early miscarriages.

In September 2019 my TSH levels were 4.09 & T4 15.6. At this point fertility consultant prescribed Eltroxin (Levo) and I am on the starting dose.

I just received copies of old blood test results from my previous GP and they are:

January 2019 TSH 4.48 & T4 16.9. Yet no one pointed this out to me back then, and I was simply told to take iron supplements!

May 2019 my TSH was 1.9 and T4 was 15.22. This is when I conceived (but lost this at 5 weeks). The first of three early losses since then.

Ferritin is always between 19-24. Cholesterol is 5.09 (range is 2.5-5) despite a healthy lifestyle (BMI 19). Mild haemolysis stated in both Jan & May results. Vitamin D was 79 nmol/L in Jan.

I don't understand why the TSH levels fluctuate?

TIA!

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Aloha79 profile image
Aloha79
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SlowDragon profile image
SlowDragonAdministrator

Fluctuations in Thyroid levels is usually due to autoimmune thyroid disease also called Hashimoto's

Bloods need retesting 6-8 weeks after each dose change (or brand change) in Levothyroxine

50mcg Levothyroxine is only a starter dose

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

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

Also EXTREMELY important to regularly retest vitamin D, folate, ferritin and B12

Ferritin needs improving to at least half way in range. Has GP done full iron panel test? Are you on iron supplements?

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal 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 . This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

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

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

Very important to get B12 and folate tested and optimal before considering TTC

TTC and thyroid disease

verywellhealth.com/infertil...

Pregnancy guidelines

thyroiduk.org.uk/tuk/about_...

gp-update.co.uk/files/docs/...

See pages 7&8 - note that dose of Levothyroxine needs increasing as soon as pregnancy is confirmed

btf-thyroid.org/images/docu...

Aloha79 profile image
Aloha79 in reply toSlowDragon

Thank you, once again, SlowDragon

I have so much info now, I am armed for when I see my GP tomorrow.

I was just confused about the fluctuating levels, but it does seem to point to Hashimoto's as the underlying cause.

SlowDragon profile image
SlowDragonAdministrator in reply toAloha79

Medics have no specific treatment for the autoimmune aspect so frequently ignore/dismiss it as irrelevant and often won't even test antibodies

But as the patient you need to know and can do much to self help

Starting with regularly monitoring vitamins

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

Aloha79 profile image
Aloha79

My latest results are in, after 2 weeks on Levo.

TSH 1.54

T4 18

T3 4.9

Vit D 117 nmol/L

TPO antibodies <15

These seem ok? Could the reduction in TSH be due to the levo (am on 50)? Or natural fluctuations due to something like Hashimoto's? I have now had 4 readings since January (have been treated since third reading in Sept). From 4.48, to 1.9, to 4.02 and now to 1.54. Are fluctuations due to stress? I wonder if I am now ok to TTC.

silverfox7 profile image
silverfox7 in reply toAloha79

Each new dose of Levo takes a full 6 weeks to build up in your body which is why retesting is usually recommending after 6 weeks so testing after two isn’t giving you helpful information unless you have been on that dose for the full six weeks.

Aloha79 profile image
Aloha79 in reply tosilverfox7

Thank you. They were taking 21 day tests so took a full blood count too. I’m already booked in for the 6 week check.

However, I’m confused, why has my TSH level gone down? Why has it fluctuated all year? And my TPO levels seem normal, so does that rule out Hashimoto’s?

silverfox7 profile image
silverfox7 in reply toAloha79

Could it be down to the time of day the tests were taken? FTS is highest in the early hours of the morning which is why we are advised to take the test as early as possible. If the TSH is taken later in the day then the value will be lower and the last thing we want is the doctor getting upset at such a low reading and so wanting to lower our medication! Do the levels get lower during the day so that could explain why your TSH readings vary so much

Aloha79 profile image
Aloha79 in reply tosilverfox7

Thanks - Jan and May were taken in the afternoon (3/4pm). Two most recent were taken at 9am (the latter after fasting etc.).

SlowDragon profile image
SlowDragonAdministrator in reply toAloha79

First to test for Hashimoto's you need BOTH TPO and TG thyroid antibodies tested

But NHS refuses to test TG antibodies if TPO or not high

So you would need to test privately via Medichecks or Blue Horizon

Test 6-8 weeks after each dose increase in Levothyroxine

Important to test folate, ferritin and B12 as well as vitamin D

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Aloha79 profile image
Aloha79 in reply toSlowDragon

Thank you! I have had all of this done, and will do so again when 6 weeks post first Levo dose. I am not in the UK so have better access to these tests.

However, my TPO was <15 so not raised. How can I otherwise prove Hashimoto's?

SlowDragon profile image
SlowDragonAdministrator in reply toAloha79

Ask for TG antibodies test and ultrasound scan of thyroid

ncbi.nlm.nih.gov/pubmed/303...

healthline.com/health/antit...

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