TSH levels are even higher now after being on T... - Thyroid UK

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TSH levels are even higher now after being on Thyroxine!

SomersetBird profile image
11 Replies

After being on Thyroxine for 3 or 4 months due to elevated TSH levels (based on fertility guidelines), I'm very surprised to see that it's even higher than before! Also oddly my Serum free T4 levels are higher than they were before, which i interpret as a better result.

TSH - 4.79 (in July it was 4.33)

Serum free T4 level - 18pmol/L (in July it was 13.9pmol/L)

Does anybody know why my TSH levels would have increased, despite being on Thyroxine? Is my Thyroid just working it all out and it will settle down soon?

Any advice would be so appreciated. Have a meeting with the Dr this week but naturally my thoughts are going into overdrive.

Thanks so much in advance.

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SomersetBird
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greygoose profile image
greygoose

First question - before even attempting to answer your question: were both blood draws at the same time of day? TSH is highest early morning and drops throughout the morning until it reaches its lowest point around midday.

That said, the difference is so slight as to be negligable. But, of course, it should have gone down! Especially as your FT4 has risen so much. But, it could be that your body is having trouble converting the exogenous hormone, so your FT3 is low. But, you'd have to have your FT4 and FT3 tested at the same time to know that.

And, if you are having trouble converting, it could be due to nutritional deficiencies. So, always best to get vit D, vit B12, folate and ferritin tested.

Or, another possibility is that you have Hashi's, which can cause fluctuations in levels. Have you had your antibodies tested?

:)

SomersetBird profile image
SomersetBird in reply to greygoose

Thanks so much for such a speedy response!

Both bloods were drawn at the same time of day, first thing, at 8:40am.

The converting issue is interesting - it doesn't seem like the NHS offer the FT3 test as routine. I paid for private tests through medichecks in July and my F3 wasn't flagged as being an issue then.

I also paid for a full blood test, which covered vitamins. Vitamin D was at the very bottom of the chart (i take 1000 IU a day, not sure what more I can do there, maybe 4000?! and put my face in the sunshine), vitamin b12 was nice and healthy and at the top end of the scale. Ferritin was middle and folate wasn't included sadly, but I take a decent folate supplement.

In the private thyroid tests I did in July it included antibody testing, but they were very low and didn't flag signs of hashimoto's - i've attached a screen grab, see what you think.

results image
greygoose profile image
greygoose in reply to SomersetBird

No, the NHS doesn't like testing the FT3.

So, when that private test was done, you weren't taking any levo? In that case, it doesn't tell us much. But, you didn't include the nutrient test results.

The thing about the comments on these private tests is that they are made by ordinary GPs, who know as little about thyroid as any other GP. They are not thyroid specialists. So, they wouldn't have a clue about conversion or T3 or anything else much. Really not worth getting. You're best of posting your results on here and getting the opinions of our seasoned warriers! :) But, as I said before, you can't really tell about conversion until your TSH is down to about 1. In that July test, you were still relying on your thyroid for your hormone, which is an entirely different kettle of fish. Because not only was the thyroid gland making T3 itself, but it was also carrying out some of the conversion. Once you're on thyroid hormone replacement, you're entirely dependant on conversion in the liver and peripheral tissues. Which isn't at all the same.

I think you do need to increase your vit D. You also need to take magnesium with it, and vit K2-MK7. Vit D won't do much without magnesium.

How long have you been taking the folate supplement?

Your antibodies are negative, but that doesn't really mean very much, because antibodies fluctuate all the time. And 20% of Hashi's people never even have over-range antibodies.

Jazzw profile image
Jazzw

How much levothyroxine are you taking?

SomersetBird profile image
SomersetBird in reply to Jazzw

25mcg thyroxine. I spoke to my Dr today after recent results and she's increased to 50mcg as she says 25mcg is teeny tiny and probably why it hasn't changed much!

Jazzw profile image
Jazzw in reply to SomersetBird

Absolutely! Here’s hoping things improve soon.

SlowDragon profile image
SlowDragonAdministrator

How much levothyroxine are you currently taking

50mcg levothyroxine is only standard STARTER dose

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

What vitamin supplements are you currently taking

When were vitamin D, folate, ferritin and B12 last tested

Have you had thyroid antibodies tested

SomersetBird profile image
SomersetBird in reply to SlowDragon

Thanks for your reply and advice! I was on 25mcg and my Dr has since increased my dosage to 50mcg following results yesterday. I tested early in the morning but unfortunately had had some breakfast so will remember this next time, thank you! Have had vit d, ferritin and b12 tested. All ok apart from vitamin d, which i'm going to increase. I'm on every vitamin possible. Folate wasn't included in that particular set of tests but will look into getting tested. Think i'm going to increase my dosage of vitamin D and re-test. I paid privately in July to have a full Thyroid test through medichecks - i've attached my results. Antibodies didn't seem to flag anything so not sure if there's anything to investigate there.

results photo
SlowDragon profile image
SlowDragonAdministrator in reply to SomersetBird

Likely to need further increase in levothyroxine after next test

Aiming for TSH always under 2, and most people when adequately treated will have TSH around or under one

SlowDragon profile image
SlowDragonAdministrator

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

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

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

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.

In U.K. medics never call it Hashimoto’s, just autoimmune thyroid disease (and they usually ignore the autoimmune aspect)

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 and last dose levothyroxine 24 hours before 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

List of private testing options

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

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

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). Ord’s is autoimmune without goitre.

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 too. Request coeliac blood test BEFORE considering trial on strictly gluten free diet

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

Before considering TTC levels need to be stable

verywellhealth.com/infertil...

.

Pregnancy guidelines

thyroiduk.org/having-a-baby-2/

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

Important See pages 7&8 re dose levothyroxine as soon as conception confirmed

btf-thyroid.org/Handlers/Do...

thyroidpharmacist.com/artic...

HowNowWhatNow profile image
HowNowWhatNow

Are you pregnant?

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